123 results for: "autismo"
Is autism a learning disability?
See two grade-schoolers explain what autism and dyslexia feel like in this video from Not Your Mum.
Understood Explica el IEPEl IEP: ¿Mi hijo necesita un IEP?
Obtenga recomendaciones de una maestra de educación especial sobre cómo saber si su hijo necesita un programa de educación individualizado (IEP) o si podría esperar. Si su hijo está teniendo dificultades en la escuela, es posible que usted se pregunte si podría necesitar educación especial. Y una vez que comience a averiguar sobre la educación especial, escuchará el término IEP, que son las siglas de “Individualized Education Program” (Programa de Educación Individualizado).Pero ¿qué es exactamente un IEP? En este episodio de Understood Explica, la presentadora Juliana Urtubey explicará los aspectos básicos del IEP y cómo averiguar si su hijo necesita este tipo de apoyo. Marcas de tiempo:[01:24] ¿Cuál es el propósito de un IEP?[04:53] ¿Qué es un IEP? [07:57] ¿Necesita mi hijo un IEP? [10:42] ¿Debería esperar para obtener un IEP para mi hijo? [13:54] ¿Y si mi hijo está aprendiendo inglés?[16:04] Puntos clavesRecursos relacionadosEntender el IEP¿Qué es una evaluación de educación especial?¿Son las dificultades de mi hijo lo suficientemente severas como para una evaluación?Estudiantes de inglés con dificultades en la escuela: Lo que necesita saberPreguntas comunes de los padres que no conocen el sistema educativoTranscripción del episodioJuliana: ¿Así que su hijo está teniendo ciertas dificultades en la escuela y usted se está preguntando si necesita un IEP? Pero ¿qué significa esto? En este episodio de “Understood Explica", brindaremos información básica sobre el IEP y cómo saber si su hijo necesita este tipo de apoyo. Desde la red de pódcast de Understood, esto es "Understood Explica el IEP”. Hoy vamos a responder la primera pregunta relacionada con el proceso del IEP. ¿Mi hijo necesita un IEP? Mi nombre es Juliana Urtubey y soy maestra certificada a nivel nacional y experta en educación especial para estudiantes multilingües. En 2021 fui seleccionada Maestra Nacional del año y estoy muy emocionada de ser la presentadora de la tercera temporada de "Understood Explica". Les cuento brevemente cómo estamos estructurando esta temporada. La mayoría de los episodios se centran en información sobre el IEP que es importante que conozcan todos los padres y cuidadores. Pero también algunos episodios están dirigidos a diferentes grupos de familias. Familias con niños pequeños, con niños mayores y con estudiantes multilingües. Y todos los episodios están disponibles en inglés y en español. Bueno, entonces comencemos. [01:24] ¿Cuál es el propósito de un IEP?Entonces, ¿cuál es el propósito de un IEP? Antes de responder esta pregunta, me gustaría explicar rápidamente qué es un IEP. IEP es la sigla en inglés de Programa de Educación Individualizado. Se trata de un plan formal que describe los apoyos y los servicios que necesita un estudiante con una discapacidad para progresar en la escuela. Una de las partes más importantes de un IEP es la instrucción especializada. El IEP está cubierto por una ley federal llamada Ley de Educación para Individuos con Discapacidades o IDEA, por sus siglas en inglés. Esta ley aplica a todas las escuelas públicas de los Estados Unidos, incluyendo a las escuelas charter. Si su hijo califica para un IEP, usted colaborará con la escuela para desarrollar metas anuales y dar seguimiento al progreso de su hijo a lo largo del año. Por lo tanto, el propósito de un IEP es básicamente ser un mapa que muestra cómo la escuela ayudará a su hijo a ponerse al día con sus compañeros. Y tal vez le sorprenda saber que tener un IEP es muy común. Casi uno de cada seis estudiantes de las escuelas públicas tienen un IEP, es decir, que millones y millones de niños tienen programas de educación individualizados. Cada uno de esos IEP está hecho a la medida de las necesidades individuales de cada estudiante. Así que si su hijo tiene dislexia, el IEP podría incluir una hora de enseñanza especial de lectura varias veces por semana. O supongamos que su hijo tiene TDAH y autismo. Usted y la escuela podrían decidir que su hijo esté en un salón con menos alumnos para recibir enseñanza más individualizada. Estos son los tipos de detalles que se incluyen en un IEP. También es importante saber que la mayoría de los niños que tienen un IEP pasan la mayor parte de su día en aulas de educación general. Por ley, los niños con IEP deben estar en la misma aula que el resto de sus compañeros tanto como sea posible. Hay otra cosa muy importante que todos los padres deberían saber. Tener un IEP no es señal de falta de inteligencia. He enseñado a muchos, muchos niños, y todos mis estudiantes tenían fortalezas y necesidades únicas. Pero a veces las fortalezas de las personas pueden estar ocultas si tienen una diferencia de aprendizaje. Por ejemplo, durante mi primer año como maestra tuve un estudiante que se llamaba Abelardo, a quien realmente le costaba leer y escribir. Lo más que yo le había visto escribir era "sí", "no" y su nombre. Pero un día descubrimos que Abelardo vendía dulces y útiles escolares que traía en su mochila y le iba muy bien en sus ventas. Hacía unas tablas para llevar un registro de su inventario y veía lo que era más popular. Incluso lo tenía codificado por color. Y eso me hizo ver que Abelardo tenía habilidades increíbles de razonamiento matemático y para los negocios, pero necesitaba apoyos formales que le ayudaran con la lectura y la escritura. Así que recuerde, a los niños les puede ir muy bien en ciertas áreas e incluso así, necesitar un IEP que los ayude a progresar en la escuela. [04:53] ¿Qué es un IEP?¿Qué es un IEP? Veamos un poco más los detalles y hablemos de lo que incluye un IEP. Hay muchas partes importantes, pero quiero ofrecerles una descripción general de cuatro cosas fundamentales en un IEP. Lo primero que van a encontrar es una sección que describe el nivel actual de desempeño académico de su hijo. Esto es el término técnico para describir cómo es el desempeño o el funcionamiento de su hijo en la escuela. Es posible que la escuela utilice las siglas PLOP ó PLP o PLAAFP, para referirse al nivel actual de logros académicos y desempeño funcional. Esta parte del IEP destaca las fortalezas y los desafíos del estudiante y cómo se comparan sus calificaciones con las de sus compañeros. También en esta sección puede que se mencionen algunos comportamientos o intereses de su hijo. Por ejemplo, qué materias le gustan y cómo se lleva con otros niños. Después sigue la sección de las metas anuales. Aquí se describe el progreso que el equipo del IEP espera del estudiante. Se enumera cada meta y cada una se divide en metas a corto plazo que se deben ir cumpliendo a lo largo del proceso. El equipo del IEP trabajará con su hijo para lograr estas metas. Más adelante en esta temporada, tendremos un episodio completo para ayudarles a colaborar con la escuela en la creación de estas metas. La tercera parte importante de un IEP es la sección de servicios. En esta parte se detalla cómo el IEP ayudará a su hijo a alcanzar las metas anuales. Esta sección enumera los servicios que recibirá su hijo y por cuánto tiempo. Como por ejemplo: 30 minutos de terapia del habla dos veces por semana. Hay muchos servicios diferentes que se pueden incluir en un IEP, desde servicios de apoyo emocional y terapia física, hasta capacitación en habilidades sociales o manejo del tiempo. Recuerde que la primera letra en IEP significa "individualizado". Así que el IEP puede incluir cualquier servicio especial que su hijo necesita para progresar en la escuela. Y por último, pero no menos importante, esta la sección que describe las adaptaciones o cambios en la forma en que su hijo hace las cosas en la escuela. Esta sección del IEP se conoce muchas veces como apoyos y servicios complementarios. Puede incluir cosas como más tiempo para realizar los exámenes y sentarse al frente del aula para facilitar que su hijo preste atención. También podría incluir tecnología de asistencia, como software de texto a voz o audiolibros. Otra cosa importante que deben saber es que un IEP es un documento legal. En un próximo episodio de esta temporada hablaremos de sus derechos durante el proceso de educación especial. [07:57] ¿Necesita mi hijo un IEP? Muy bien, aquí vamos. Esta es una de las preguntas principales: ¿Necesita mi hijo un IEP? A veces la respuesta a esta pregunta es muy clara: "Mi hijo es ciego y necesita que le enseñen a leer Braille". Pero a veces la pregunta es más difícil de responder. Mi hijo tiene TDAH y necesita mucho apoyo para organizarse y seguir instrucciones. ¿Serán suficientes las adaptaciones en el aula para ayudar a mi hijo a progresar en la escuela? ¿O será que mi hijo necesita de educación especializada? Las escuelas analizan muchos tipos de datos diferentes para determinar qué niños califican para un IEP. En otro episodio de esta temporada, explicaremos el proceso que las escuelas emplean para decidir si un niño necesita educación especial. Pero por ahora voy a compartir un enlace en las notas del programa a un artículo muy útil en Understood que puede ayudarlo a aprender todo sobre las evaluaciones para educación especial. Pero las escuelas no pueden evaluar a su hijo para educación especial a menos que usted lo autorice primero. Así que usted tiene un papel muy importante aquí. Si su hijo está teniendo dificultades en la escuela, puede que se pregunte si son lo suficientemente serias como para necesitar un IEP. Para ayudarlo a decidir, quisiera que se haga unas preguntas. ¿Por qué un IEP ahora? ¿Qué lo hizo pensar en esto? ¿Fue algo que dijo un maestro o que su hijo mencionó? ¿Sus preocupaciones son recientes o las ha tenido durante un tiempo? Pensar en lo que generó sus inquietudes puede ayudarlo a hablar de ellas con la escuela o con el proveedor de atención médica de su hijo. ¿Cómo las dificultades de su hijo afectan su desempeño en la escuela? ¿Su hijo está teniendo problemas con una asignatura en particular, como lectura o matemáticas? ¿Tiene dificultad para socializar o concentrarse en la clase? Intente escribir algunos ejemplos aunque no sepa cuál es la causa. ¿Qué está observando en la casa? ¿Se tarda horas en hacer la tarea y casi siempre termina llorando? ¿Cuán frecuentemente se preocupa su hijo por la escuela? ¿Qué tan intensas son sus preocupaciones? ¿Su hijo se quiere quedar en la casa porque la escuela le resulta muy difícil? Este es el tipo de preguntas que lo pueden ayudar a pensar en qué tantas dificultades está teniendo su hijo y si usted está listo para hablar con la escuela sobre cómo brindarle más apoyo. [10:42] ¿Debería esperar para obtener un IEP para mi hijo? Bien, entonces usted ha notado que su hijo está teniendo dificultades y piensa que tal vez necesita más apoyo en la escuela. Hay una pregunta muy común que los padres se hacen al llegar a este punto. ¿Es ahora el momento adecuado? O ¿mejor debería esperar para que mi hijo obtenga un IEP? He trabajado con muchos padres que querían esperar, porque tenían la esperanza de que su hijo superaría sus desafíos. Pero he descubierto que es mejor atender cuanto antes las necesidades de los niños. Ser proactivo puede tener un impacto positivo en los niños de muchas formas diferentes: académica, social y emocionalmente. Así que si usted tiene dudas sobre si su hijo necesita un IEP ahora o si podría esperar, quiero que haga tres cosas importantes. Primero, pregunte a la escuela qué tipo de intervenciones han probado con su hijo y por cuánto tiempo. Generalmente se llevan a cabo durante varias semanas, y durante este tiempo, la escuela realiza un seguimiento del progreso que está teniendo su hijo. Si usted considera que las habilidades de su hijo están mejorando con la intervención, usted podría decidir que es mejor esperar para solicitar una evaluación de educación especial. Pero usted no tiene que esperar. Puede solicitar una evaluación en cualquier momento. Lo segundo que quiero que haga es encontrar un aliado en la escuela, ya sea un maestro, un asistente u otro miembro del personal.A veces las escuelas cuentan con personas que orientan y ayudan a las familias. Usted puede pedir en la oficina que lo pongan en contacto con uno. Tener una relación con alguien en la escuela en quien usted confíe es importante. Lo ayudará a entender mejor el proceso, hacer preguntas y obtener ayuda para su hijo. La tercera cosa que quiero que considere es el momento del año. Recuerde, usted tiene el derecho a solicitar una evaluación en cualquier momento, pero en la práctica es mejor no hacerlo durante las primeras semanas del año escolar. A menos que tenga inquietudes del año anterior. Igualmente, es mejor evitar solicitar un IEP al final del año, cuando las clases están a punto de terminar. Estas son algunas cosas que lo ayudarán a decidir si es el momento adecuado para hablar sobre un IEP o si es mejor esperar. Solamente como comentario general: sé que muchas familias se niegan a expresar sus preocupaciones por temor a ser vistas como molestias. Y es posible que algunas familias hispanas piensen que no les corresponde decirle a la escuela cómo educar o apoyar a sus hijos. Pero quiero ser muy clara en esto. Las escuelas en los Estados Unidos quieren que las familias informen a los maestros si les preocupa el progreso de sus hijos, y los maestros quieren colaborar con las familias. Así que los animo a hablar con el maestro de su hijo y compartir sus inquietudes. Ya sea que esté solicitando un IEP o no. [13:54] ¿Y si mi hijo está aprendiendo inglés?La última parte de este episodio trata sobre un tema muy cercano a mi corazón, ¿y si mi hijo está aprendiendo inglés? Antes de responder esta pregunta sobre el IEP, quiero mencionar que las escuelas utilizan diferentes términos para describir a los estudiantes que hablan otro idioma en casa. Muchos educadores usan el término "estudiantes del idioma inglés". Yo prefiero el término "multilingüe", y mejor aún, "dotado lingüísticamente". Quiero señalar aquí que todos los niños aprenden los idiomas a ritmos diferentes, y está bien. Y que puede ser difícil dominar el inglés al mismo tiempo que se aprende a leer, escribir y matemáticas en ese nuevo idioma. Esto también puede dificultar saber si los problemas que está teniendo un niño se deben a una barrera del idioma o a otra cosa, como una diferencia de aprendizaje como la dislexia. Hablaremos más sobre esto en un próximo episodio de esta temporada. Por ahora, voy a incluir en las notas del programa un enlace a un artículo de Understood.org que le gustará leer si su estudiante multilingüe está teniendo dificultades en la escuela. Incluye muchas buenas preguntas para ayudarle a pensar si su hijo podría necesitar un IEP. También quiero destacar algo importante: aprender más de un idioma no puede causar una diferencia o discapacidad del aprendizaje. Todos los niños, incluso los que piensan y aprenden de manera diferente, pueden ser multilingües. Las familias me preguntan frecuentemente si deberían de dejar de hablar su idioma nativo con sus hijos porque les preocupa que pudiera ser perjudicial. Esto es falso. De hecho, los expertos en educación recomiendan que las familias sigan enseñando a los niños en los idiomas que utilizan en la casa. Hablar varios idiomas es beneficioso para el aprendizaje y el desarrollo del cerebro del niño. [16:04] Puntos clavesBueno, cubrimos mucha información en este episodio, por lo que me gustaría concluir con algunos puntos claves para ayudarlo a pensar si su hijo necesita un IEP. Piensa en cuánto o con qué frecuencia está teniendo dificultades su hijo. Ser proactivo puede ayudar a su hijo a largo plazo, no solo académicamente, sino también social y emocionalmente. Los niños se pueden desempeñar muy bien en algunas áreas e incluso así necesitar un IEP para progresar en la escuela. Bueno, eso es todo por este episodio de "Understood Explica". Conéctese al próximo episodio para conocer la diferencia entre el IEP y otro tipo de apoyo común en la escuela, llamado el plan 504. Usted escuchó "Understood Explica el IEP". Esta temporada fue desarrollada en colaboración con UnidosUS, la organización hispana de defensa y derechos civiles más grande del país. ¡Gracias Unidos! Si desea más información sobre los temas que cubrimos hoy, consulte las notas del programa de este episodio. Ahí incluimos más recursos, así como enlaces a todo lo que se mencionó en este episodio. Understood es una organización sin fines de lucro dedicada a ayudar a las personas que piensan y aprenden de manera diferente, a descubrir su potencial y progresar. Obtenga más información en understood.org/mission.Créditos:Understood Explica el IEP fue producido por Julie Rawe y Cody Nelson, con el apoyo en la edición de Daniella Tello-Garzón Daniella y Elena Andrés estuvieron a cargo de la producción en español.El video fue producido por Calvin Knie y Christoph Manuel, con el apoyo de Denver Milord.La música y mezcla musical estuvieron a cargo de Justin D. Wright.Nuestra directora de producción fue Ilana Millner. Margie DeSantis proporcionó apoyo editorial. Whitney Reynolds estuvo a cargo de la producción en línea. Laura Key es la directora editorial de la red de Podcast de Understood, el director creativo es Scott Cocchiere y el productor ejecutivo es Seth Melnick.Agradecemos especialmente la ayuda del equipo de expertos, cuyos consejos dieron forma a esta temporada de podcast: Shivohn García, Claudia Rinaldi y Julian Saavedra.
What is autism?
Autism is a neurodevelopmental disorder that affects how people communicate and interact with others and the world around them. It’s lifelong — you don’t grow out of it.Autism often co-occurs with other conditions, like ADHD and learning disabilities. They share common challenges with social skills and communication, including:Trouble reading nonverbal cues or picking up “unwritten” social rulesDifficulty participating in conversation Not always being able to modulate (control how loud you speak, or in what tone)Taking language literally and not always understanding puns, riddles, or figures of speech Another common sign is what’s known as stereotyped behavior. This may look like having a “special interest” around a certain topic or object. Or it can refer to repetitive behaviors and movements like: Arm flapping or rocking (sometimes called stimming)Repeating certain sounds or phrases (sometimes called echolalia)There’s a lot of variation in how autism presents from person to person. Some people communicate by speaking. Others use nonverbal communication. There’s also a wide range in intellectual and self-care abilities. An autism diagnosis reflects this by using Support Levels of 1, 2, or 3. These levels show how much support a person needs, with 3 as the highest level. People talk about autism in different ways. Doctors and schools often use the term autism spectrum disorder (or ASD) and person-first language (“a person with autism”). Some people with the diagnosis prefer identity-first language and may call themselves autistic.Rather than calling autism a disorder, some in the autism community embrace neurodiversity. This concept says conditions like autism are neurological variations that are simply part of human difference.
Understood Explica el IEPEl IEP: Las 13 categorías de discapacidad
Es necesario que su hijo tenga discapacidad que corresponda a alguna de las categorías de discapacidad para poder calificar para un IEP. En este episodio, explicaremos de qué se trata. Existen 13 categorías de discapacidad enumeradas en una ley federal llamada Ley de Educación para Individuos con Discapacidades, comúnmente conocida como IDEA por sus siglas en inglés.Para obtener un Programa de Educación Individualizado o IEP, su hijo tiene que cumplir con el criterio de tener una discapacidad que se ajuste a alguna de esas 13 categorías.Los nombres de esas categorías pueden ser difíciles de entender, como “discapacidades específicas del aprendizaje” u “otros impedimentos de salud”.En este episodio de Understood Explica, su presentadora Juliana Urtubey hablará de lo que significan esas categorías y cómo se relacionan con el IEP. También explicará qué hacer si su hijo no califica en ninguna categoría de discapacidad o si califica en más de una.Marcas de tiempo:[00:48] ¿Por qué el IEP tiene categorías de discapacidad?[3:25] ¿Cuáles son las 13 categorías de discapacidad en IDEA?[9:46] ¿Las categorías de discapacidad son las mismas en todos los estados?[12:51] ¿El IEP de mi hijo puede incluir más de una discapacidad?[14:19] ¿Qué pasa si mi hijo no califica para ninguna categoría de discapacidad?[16:00] Puntos clavesRecursos relacionadosLas 13 categorías de discapacidad en IDEA (articulo con infográfico)Centros de capacitación para padres: Un recurso gratuito en su estadoDescargar: Modelos de cartas para solicitar evaluaciones y reportesOpciones para resolver una disputa del IEPTranscripción del episodioJuliana: Para obtener un IEP, los niños tienen que cumplir con el criterio de tener al menos una categoría de discapacidad. Pero, ¿y si la capacidad de su hijo corresponde a más de una categoría? ¿Y si no corresponde a ninguna? Desde la red podcast de Understood, esto es "Understood Explica el IEP". En este episodio, revisaremos las categorías de discapacidad que utilizan las escuelas al decidir si un niño califica para recibir educación especial. Mi nombre es Juliana Urtubey, y soy la Maestra Nacional del año 2021. También soy experta en educación especial para estudiantes multilingües y soy la presentadora de esta temporada de "Understood Explica", que está disponible en español y en inglés. Bueno, comencemos.[00:48] ¿Por qué el IEP tiene categorías de discapacidad?¿Por qué el IEP tiene categorías de discapacidad?. Antes de revisar cada una de las categorías, quiero explicar por qué las escuelas las utilizan. La palabra clave es "elegibilidad". Su hijo no puede obtener un IEP, es decir, un Programa de Educación Individualizado, sino cumple con el criterio de al menos una categoría de discapacidad. Este requisito proviene de la ley de Educación para Individuos con Discapacidades o IDEA, por sus siglas en inglés. Esta ley tiene 13 categorías de discapacidad. Los padres escucharán hablar de esas categorías cuando asistan a la reunión de determinación de elegibilidad de su hijo. El equipo revisará las categorías y dirá si su hijo califica para alguna de ellas. Es posible que escuche el término "clasificación de discapacidad". Para muchas familias, ese es un momento muy emotivo de la reunión. Puede ser difícil escuchar que su hijo tiene una discapacidad, pero siempre pueden pedir hacer una pausa para calmarse y ordenar sus ideas. En un minuto revisaremos cada categoría, pero antes de eso hay algunas cosas generales que quiero que sepan sobre ellas. Primero, IDEA tiene trece categorías de discapacidad, pero eso no significa que solo cubra trece discapacidades. Estas categorías son tan amplias que incluso la condición más inusual podría encajar en alguna parte. Segundo, a veces las dificultades que tienen los niños no son causadas por una discapacidad. Por ejemplo, faltar mucho a la escuela o tener dificultad para aprender inglés como idioma adicional. En esos casos existen otras maneras de ayudar a esos estudiantes, pero para obtener un IEP los niños deben tener una discapacidad. Lo siguiente que quiero mencionar, es que algunas categorías de discapacidad puede que reciban más financiación que otras categorías, pero la categoría de discapacidad de su hijo no puede usarse para limitar los servicios de su hijo. Las categorías de discapacidad son puertas a la educación especial y su hijo solo necesita pasar por una de estas puertas para calificar, así tendrá acceso a cualquier tipo de instrucción especialmente diseñada o servicios que necesite. [3:25] ¿Cuáles son las 13 categorías de discapacidad en IDEA? Entonces, ¿cuáles son las 13 categorías de discapacidad en IDEA? Voy a empezar con las cuatro categorías más comunes, y para ayudarlos a comprender lo comunes que son, quiero que se imaginen un gráfico circular. Esto representa a los millones de niños que tienen un IEP. La porción más grande de este gráfico son los niños que tienen discapacidades específicas del aprendizaje o SLD, por sus siglas en inglés. Aproximadamente, un tercio de los niños con IEP, califican para educación especial porque tienen una discapacidad del aprendizaje. Algunos ejemplos comunes incluyen la dislexia, que algunas escuelas llaman un trastorno de la lectura o una capacidad específica del aprendizaje de la lectura. La discalculia es una discapacidad matemática o un trastorno matemático. También existe la disgrafia y el trastorno de la expresión escrita, donde los niños pueden tener mucha dificultad para expresar sus ideas en un papel. Bien, entonces, los niños con discapacidades del aprendizaje representan aproximadamente un tercio del gráfico circular de la educación especial. La segunda porción más grande es para los impedimentos del habla o del lenguaje. Casi una quinta parte de los niños con IEP están en esta categoría. Este grupo incluye a muchos niños que necesitan terapia del habla, también incluye a los trastornos del lenguaje que pueden dificultar de aprender nuevas palabras o reglas gramaticales o comprender lo que dice la gente. Los trastornos del lenguaje también pueden entrar en la categoría de discapacidades del aprendizaje. Por lo tanto, si su hijo tiene un trastorno del lenguaje, puede que sea un poco complicado elegir la categoría. Bueno, entonces ya está lleno la mitad del circulo de educación especial que estamos dividiendo, y solamente con los niños que pertenecen a dos de las trece categorías, discapacidades específicas del aprendizaje e impedimentos del habla o del lenguaje. Ahora, la tercera porción más grande se llama Otros Impedimentos de Salud, OHI por sus siglas en inglés. Incluye alrededor de 1 de cada 6 niños con IEP. Esta es una categoría muy importante para las familias, porque incluye a muchos niños con TDAH, la ley IDEA enumera una serie de ejemplos que encajan en la categoría de "otros impedimentos de salud", incluyendo TDA y TDAH. También incluye asma, diabetes, epilepsia, intoxicación por plomo y anemia falciforme. Estos solo son algunos ejemplos que se mencionan en la ley, esta categoría es muy amplia. Bien, continuemos con la cuarta porción más grande del círculo, que es el autismo. El autismo incluye aproximadamente al 12% de los niños que tienen un IEP. Esto significa que alrededor de 1 de cada 8 o 9 niños con IEP califican para educación especial porque tienen autismo. Ahora, quiero hacer una pausa y señalar que estas cuatro categorías de discapacidad — las discapacidades del aprendizaje, los impedimentos del habla o del lenguaje, otros impedimentos de salud y el autismo — representan alrededor del 80% del círculo. Entonces, ¿qué pasa con el resto de las categorías? Bueno, están las discapacidades intelectuales que ocupan una porción bastante pequeña, el 6% del círculo, es decir 1 de cada 16 niños con IEP. Algunos ejemplos que podrían estar en esta categoría son el síndrome de Down y el síndrome de alcoholismo fetal. Luego está el trastorno emocional, que representa una porción un poco más pequeña, el 5% del círculo — es decir 1 de cada 20 niños con IEP — y cubre cosas como la ansiedad y la depresión. Y luego hay otras 7 categorías que representan porciones muy pequeñas del círculo. El impedimento ortopédico. El impedimento visual, que incluye la ceguera. El impedimento auditivo, que incluye la sordera. La sordoceguera, que tiene su propia categoría y la lesión cerebral traumática. También hay discapacidades múltiples, esta categoría no se usa si el estudiante tiene TDAH y dislexia. Es más probable que discapacidades múltiples se utilicen para algo como discapacidad intelectual y la ceguera o cualquier otra combinación que probablemente requiere un enfoque altamente especializado. Y por último, están los retrasos en el desarrollo, que es la única categoría de discapacidad en IDEA que incluye un límite de edad. Hablaré más sobre eso en un minuto. Pero por ahora les quiero recordar que no todas las personas con una discapacidad califican para un IEP. La discapacidad debe afectar su educación lo suficiente como para necesitar una enseñanza especialmente diseñada. Este es un ejemplo. Supongamos que su hijo tiene TDAH. ¿Necesita enseñanza especialmente diseñada para poder organizarse y enfocarse en lo que está haciendo? O solo necesita algunas adaptaciones en el aula, como sentarse cerca del maestro y alejado de ventanas o pasillos que lo distraigan. Si no necesita enseñanza especializada, la escuela dirá que no califica para un IEP. Pero puede obtener un plan 504. Si desea obtener más información acerca de cómo los niños califican para un IEP, escuche el episodio cuatro. Y si quiere aprender más sobre las diferencias entre el IEP y el plan 504, escuche el episodio dos. [9:46] ¿Las categorías de discapacidad son las mismas en todos los estados?¿Las categorías de discapacidad son las mismas en todos los estados? La respuesta corta es no. La clasificación de la discapacidad puede ser un poco diferente dependiendo del estado. Algunas de estas diferencias son bastante pequeñas. Por ejemplo, algunos estados usan la frase "categoría de discapacidad" y otros usan el término "excepcionalidad". Y algunos estados tienen más de 13 categorías, porque hacen cosas como dividir el impedimento del habla o del lenguaje en dos categorías. Otra diferencia es como los estados utilizan la categoría de retrasos en el desarrollo. A los estados no se les permite utilizar esta categoría después de los nueve años, pero en algunos estados la edad límite es menor. Por ejemplo, yo vivía en Nevada, y ahí se podía clasificar a los niños con retraso en el desarrollo hasta los cinco años. Y cuando cumplían seis años, mi equipo tenía que determinar si otra categoría de discapacidad se ajustaba a sus necesidades. En la mayoría de los casos, esos estudiantes cambiaban a discapacidades específicas del aprendizaje. Pero en Arizona, que es donde vivo ahora, los niños pueden seguir recibiendo servicios bajo la categoría de retrasos en el desarrollo hasta que cumplan 10 años de edad. Hay otra gran diferencia que quiero mencionar, y tiene que ver con la forma en que los estados clasifican a los niños con discapacidades específicas del aprendizaje. Algunos estados todavía evalúan a los niños para las discapacidades del aprendizaje, utilizando lo que se conoce como modelo de discrepancia. Esto consiste en comparar el coeficiente intelectual o la capacidad intelectual de un niño con su rendimiento académico. Un ejemplo de discrepancia, sería un estudiante de quinto grado con un coeficiente intelectual promedio, pero que lea en segundo grado. Pero algunos estados no permiten que las escuelas utilicen un modelo de discrepancia. Esto se debe a que puede haber sesgos culturales y otros problemas con las pruebas del coeficiente intelectual, incluidas las pruebas que se realizan a los niños que hablan un idioma distinto del inglés en la casa. Así que estas son algunas de las formas en que los criterios de elegibilidad pueden diferir de un estado a otro. Si desea saber cuales son los requisitos de elegibilidad de su estado, pregúntele a la persona encargada en la escuela de conectar a los padres con el personal escolar o comuníquese con un centro de información y capacitación para padres. Estos centros, conocidos como PTI, por sus siglas en inglés, son recursos gratuitos para las familias. Cada estado tiene al menos uno. Voy a poner un enlace en las notas del programa, para ayudarlo a encontrar el centro más cercano. [12:51] ¿El IEP de mi hijo puede incluir más de una discapacidad?¿El IEP de mi hijo puede incluir más de una discapacidad? Sí. Si su hijo tiene más de una discapacidad es recomendable mencionarlas en el IEP. Esto puede facilitar que el IEP incluya todos los servicios y adaptaciones que su hijo necesita. Es posible que el equipo del IEP necesite clasificar las discapacidades según cual afecta más la educación de su hijo. Pero no se pueden usar etiquetas como "principal" y "secundaria" para limitar los servicios que recibe su hijo. Es principalmente una herramienta de recopilación de datos para que los estados puedan tener una idea más amplia de quién recibe servicios y para qué. Y si usted no está seguro de cuál categoría de discapacidad debería incluirse como principal, piense que es lo más importante que los maestros deben tener en cuenta para apoyar a su hijo. Otra cosa que quiero mencionar, es que la categoría principal de discapacidad de su hijo puede cambiar a medida que crece. Un ejemplo es que los niños pequeños que tienen un impedimento del lenguaje podría cambiar a discapacidad específica del aprendizaje a medida que sus dificultades con la lectura o la ortografía se definan mejor con el tiempo. [14:19] ¿Qué pasa si mi hijo no califica para ninguna categoría de discapacidad?¿Qué pasa si mi hijo no califica para ninguna categoría de discapacidad? El equipo puede decidir esto después de la evaluación inicial de su hijo. O, si su hijo ya tiene un IEP, es necesario realizar una reevaluación, al menos cada tres años. Y parte del motivo es para ver si su hijo ya no necesita enseñanza especializada. Si la escuela dice que su hijo no cumple con los criterios para ninguna de las categorías de discapacidad, hay algunas cosas que puede hacer. Lo primero es que revise el informe de la evaluación. ¿La escuela examinó las áreas problemáticas correctas? Quizás el equipo necesite realizar más pruebas en otras áreas. También puede solicitar una evaluación educativa independiente, conocida como en inglés por sus siglas IEE. Esta evaluación la realiza alguien que no trabaja para la escuela, lo más probable es que la tenga que pagar, pero en algunos casos la escuela debe cubrir el costo. Understood tiene un buen modelo para ayudarlo a redactar este tipo de solicitudes. Voy a incluir un enlace en las notas del programa. Estos modelos de carta están disponibles en español y en inglés. Otra cosa que puede hacer es conocer las opciones de resolución de disputas. Más adelante en esta temporada tendremos un episodio completo sobre esto, pero voy a incluir el enlace a un artículo para ayudarlo a comenzar. [16:00] Puntos clavesHemos cubierto muchos aspectos en este episodio. Por ello, antes de concluir, voy a hacer un resumen de lo que hemos aprendido. IDEA tiene trece categorías de discapacidad, pero eso no significa que solo cubra trece discapacidades. La categoría de discapacidad de su hijo es una puerta a la educación especial, no limita el tipo de servicios que puede recibir su hijo. El IEP de su hijo puede incluir más de una discapacidad y la categoría principal puede cambiar con el tiempo. Bien, esto es todo por este episodio de "Understood Explica". La próxima vez, vamos a hablar sobre términos importantes y derechos legales que todos los padres deben conocer si sus hijos califican para un IEP. Acaba de escuchar un episodio de "Understood Explica el IEP". Esta temporada fue desarrollada en colaboración con UnidosUS, que es la organización de defensa de derechos civiles hispanos más grande de todos los Estados Unidos. ¡Gracias, Unidos! Si desea más información sobre los temas que cubrimos hoy, consulte las notas del programa de este episodio. Ahí encontrará más recursos, así como enlaces a los temas mencionados hoy. Understood es una organización sin fines de lucro dedicada a ayudar a las personas que piensan y aprenden de manera diferente, a descubrir su potencial y progresar. Conozca más en understood.org/mission.CréditosUnderstood Explica el IEP fue producido por Julie Rawe y Cody Nelson, con el apoyo en la edición de Daniella Tello-Garzón. Daniella y Elena Andrés estuvieron a cargo de la producción en español.El video fue producido por Calvin Knie y Christoph Manuel, con el apoyo de Denver Milord.La música y mezcla musical estuvieron a cargo de Justin D. Wright.Nuestra directora de producción fue Ilana Millner. Margie DeSantis proporcionó apoyo editorial. Whitney Reynolds estuvo a cargo de la producción en línea.La directora editorial de la red de Podcast de Understood es Laura Key, el director creativo es Scott Cocchiere y el productor ejecutivo es Seth Melnick.Agradecemos especialmente la ayuda del equipo de expertos, cuyos consejos dieron forma a esta temporada de podcast: Shivohn García, Claudia Rinaldi y Julián Saavedra.
I’ve heard that autism and ADHD are related. Is that true?
See a chart that compares ADHD and autism.
ADHD Aha!ADHD, working memory, and feeling like a “burden” (Pablo’s story)
Pablo’s wife noticed his ADHD-related struggles. And he shares a unique bond with his daughter, who has autism. Pablo Chavez forgetful easily distracted, trouble managing emotions. He’s also playful, fun dad. unique bond daughter, autism. Pablo’s wife Britney noticed trouble working memory, encouraged get evaluated ADHD. Pablo reflects ADHD-related challenges sometimes make feel like “burden” home. also positive attitude brings joy people around him.We learned Pablo’s story wrote us! love hearing listeners. email us ADHDAha@understood.org.Related resourcesWhat working memory?ADHD emotionsThe difference ADHD autismPodcast transcriptPablo: So, biggest "aha" moment wife pushing get diagnosis, know, several years big roller coaster really high highs really low lows, depression, anxiety dealing issues. like, no, that's it. know, something change.Laura: Understood Podcast Network, "ADHD Aha!" — podcast people share moment finally clicked someone know ADHD. name Laura Key. I'm editorial director Understood. someone who's ADHD "aha" moment, I'll host.I'm today Pablo Chavez. Pablo electrician, husband, father two lives California. Pablo got touch us via email. wrote us talk us show share story. compelled wanted invite on. thanks coming on, Pablo, thanks emailing us.Pablo: course. Thank you, Laura, me.Laura: anyone listening interested sharing story, email address ADHDAha@understood.org. read emails come in. don't always time respond right away, I'm thrilled hearing amazing people like you, listening show want share story.Pablo: It's honestly really great podcast. I've heard couple stories twice already.Laura: Thank you. means lot me. about, would love know, get diagnosed ADHD? Pablo: September/October 2021 officially got diagnosed. Laura: led seeking evaluation getting diagnosed ADHD?Pablo: That's kind like two-part series struggled change positions work, lot memorization, computer skills, scheduling, planning I'm strong in. boss would often get onto me. Like could forget? It's schedule? It's plan. Laura: again? Pablo: I'm union electrician, subcategorized low-voltage electrician. deal lot systems access control, data networks, CCTV, fire, alarm, DAS systems, fiber optics. I'm communications. I'm actually Airbnb, headquarters San Francisco. company contracted Airbnb manage access control systems globally. manage 16 sites, Beijing, Singapore, Sydney, Paris, Dublin, Portland, Montreal. Yeah, place. Laura: Wow. lot responsibility. sounds like lot manage.Pablo: Yeah, is. is. got yearly review, that's told me, like, performance isn't par. It's well. need step up. telling pushed start seeking help. That's wife told me, think aboutADHD? know, maybe symptoms coincide ADHD is. Laura: noticing? Pablo: Memory biggest part, honest. even going store, she'd send two three things. I'd forget least one, I'd call multiple times. again? again?One thing mention often usually parties, would often ditch her. purposely, right? go, oh, I'm going say hi guys really quick. I'd get caught jump another group go another group. end night, she'd fairly upset. know, barely hung me, know. And — understand someone would feel way. people would like upset significant didn't hang uncomfortable setting her. 'Cause she's introvert.I'm much extrovert. it's purposefully ignoring her, accidentally getting caught things. Laura: Give example. You're bouncing around, you're party you're talking someone. happens? move something else. Tell that. Pablo: Yeah. get — wife likes call giddy. get really giddy, really childlike playful energy. bounce around, conversate. Get excited. People seem eager talk usually seem interested giddiness. like learn. like hear stories. guess like interaction. It's soothing. It's fun.Laura: imagine one things really drew you. giddiness, playfulness. Pablo: Yeah, that's mentioned. soon started taking medicine, little concerned. thought wouldn't anymore, stories she's heard.Laura: case you, maintain giddiness? Pablo: Oh yeah, much. Laura: I'd like go back conversation wife first suggested, could maybe ADHD? remember said you? Pablo: brought lot symptoms. Like would extreme mood swings. I'd either really happy really mad upset. way express anger shutting down, shut down. don't talk. eye contact. I'm barely even there. Laura: maybe trouble managing emotions. accurate? Pablo: Yes, much so. much so.Laura: That's really common actually, Pablo. People ADHD, know, might tend feel anger frustration disappointment intensely others. That's related trouble executive functioning. Pablo: Yes. Oh, one. Executive function. would get stuck nowhere, knowing lot things do, able start. I'd hyperfocused things, one thing, maybe day complete clearness. Laura: describing earlier conversation, sounded like trouble working memory, absolutely sign ADHD. It's like sticky note brain you're storing short-term information. Pablo: Exactly. heard perfect analogy that, helped, kind help explain wife lot people ADHD is. imagine list tasks. sticky notes little cards. put desk shuffle them. That's memory. That's order go in. know, one — don't remember. kind look through, sort, every time. Laura: Pablo, used server restaurant — karaoke restaurant places. remember keep track people's orders. Like would furiously write down. — tell everybody, actually really great server. hyperaware struggled working memory just, never missed beat, right? always, wrote everything point would stayat table little bit long, never forgot anything. wrote down. Pablo: We're adaptive like that. think that's kind drives us little bit knowing fault. perfectionist. wife calls perfectionist, much so. "go big don't it" type attitude. giddiness always "go big." Don't shy away. it. Laura: last spoke, mentioned felt like burden. Pablo: Yes, much so. think rejection sensitivity, believe it's called. think affects quite bit. remember growing up, afraid lot things. lot things. illegal immigrant child. think pushed back further, kind heightened rejection sensitivity. Always felt like burden. felt quiet. Like would rely people say things me. growing up, pretty much same, except lot confident. learned mask lot symptoms, would portrayed quiet scary.Laura: felt like people perceived quiet scary? Pablo: Oh no, know. told me. Laura: told you. Pablo: Yeah. really fit high school. starting quarterback high school pitcher outfielder baseball. went all-league baseball. didn't good football, though, coming quarterback, right, freshman. told really scary, really scary, know, quiet, scary, serious. soon started practicing got know me, like, dude, funny. You're hilarious. You're cool. can't believe afraid you. Laura: That's big difference described terms giddy fun parents. hiding lot.Pablo: much masking lot symptoms high school. Laura: feeling like burden, Pablo, change got diagnosed? Pablo: No. No. don't think it'll ever change don't really control symptoms. feel like always rely people should. it's just, it's something don't want do. I'm learning accept it. I'm learning that, know, like wife wants help me. She's forgiving. She's tend
My kids have both autism and learning and thinking differences, and it’s complicated
I have three children. Two of my kids have autism, two have learning and thinking differences, and one has neither. That sounds like the beginning of a brain teaser or a logic puzzle, but it’s not. It’s just my reality.Recently, my younger son was diagnosed with an autism spectrum disorder in addition to his ADHD and sensory processing issues. I’m still in shock from his autism diagnosis. And my shock surprises me. That’s because he’s not my first child to receive an autism diagnosis.My older son was diagnosed the other way around — Asperger’s syndrome first, and then we learned later he has executive functioning issues, too. I didn’t struggle with his autism diagnosis. In fact, I was relieved when he was finally diagnosed.Before he was diagnosed, we didn’t have a way to frame his struggles. It was a years-long process of evaluation and of him struggling in school before we had some answers. So I was relieved that he could finally get the supports and services he needed.I was also relieved because none of us had to feel so alone anymore. There was an entire community of parents like us and kids like him.Why was I relieved with our older son’s diagnosis, but now reeling with our younger son’s?Our younger son’s autism diagnosis came two years after he was diagnosed with ADHD. I felt like we’d already found our place with him in the learning and thinking differences community. But then autism was added to the mix. Now I’m not sure which community I relate to.There’s definitely some overlap of symptoms between his autism and learning and thinking differences. For instance, we’re not sure if our younger son’s sensory issues are related to his ADHD, to his autism, or both. His issues with impulsivity and social skills could be a sign of either, too. But some things, like his intense interests in everything about cars and trains, are clearly traits of autism.I don’t know if I’d feel this way if he had, say, ADHD and asthma, like Understood blogger Kerri MacKay. She has both and is an advocate in both communities. But that seems much more clear-cut and easier to sort. Asthma-related symptoms are caused by asthma. ADHD symptoms are caused by ADHD.People send me links to all the cool stories and research studies about autism because they think it might interest me “as a parent.”They also send me links about learning and thinking differences because they think it might interest me “because of what you do for work.” (I’m a former teacher and early intervention specialist, and a parent advocate.)But it’s not that simple. My sons are uniquely themselves. They have challenges that create challenges for me as a parent — challenges that other parents have faced and might be able to help me through.If I’m looking for help, it doesn’t matter if the resources and support I find helpful are autism-specific or ADHD-specific. If it works, it works. If people understand me, they understand me.I don’t want my kids to have to leave pieces of themselves behind. I want them to find support wherever people understand them.I don’t want to have to choose one community over another. And even though my experience is unique, I know there are other families like mine. I don’t want any other parents to feel like they have to choose, either.I think making that happen starts with greater understanding that kids can have both autism and learning and thinking differences. They can have two very separate conditions that need different interventions. But they can’t separate out the different pieces of themselves and put them in neat categories.It would be so much less frustrating if we could sort our kids’ symptoms into an “autism box” and a “learning and thinking differences box.” But we can’t because they blend together.I have three children. Two of my kids have autism, two have learning and thinking differences, and one has neither. Three of them have the ability to make me laugh, make me proud, make me cry, and make me crazy. And they all deserve to belong to any group of kids like them, even if they don’t fit neatly into any one group.
In ItADHD and sleep problems
Many kids with ADHD have trouble with sleep. How can families help kids with ADHD get a good night’s sleep? Many kids ADHD trouble sleep. kids can’t fall asleep stay asleep, many families struggle everybody getting good night’s sleep. In episode, hosts Amanda Morin Gretchen Vierstra talk guests “in it” comes sleep challenges. First, hear Belinda, whose son ADHD, autism, trouble sleeping. Find deals sleep challenges, parent someone struggles sleep herself. Then, hosts get expert advice clinical psychologist, Dr. Roberto Olivardia. Learn connection ADHD sleep. get ideas better sleep toolbox strategies.Related resourcesHow ADHD affects sleep — helpDownload: Bedtime checklists kids Follow Belinda Instagram Twitter see advocacy neurodivergent people. Episode transcriptAmanda: Hi, I'm Amanda Morin. I'm director thought leadership Understood.org, I'm parent kids learn differently.Gretchen: I'm Gretchen Vierstra, former classroom teacher editor Understood, "In It."Amanda: "In It" podcast Understood Podcast Network. show, talk parents, teachers, experts, sometimes even kids. We're offer perspectives, stories, advice people challenges reading, math, focus, types learning differences.Gretchen: Today, we're looking real connection ADHD sleep problems. we'll providing excellent advice help kids can't seem get good night's sleep.Amanda: Later, we'll hear Dr. Roberto Olivardia, clinical psychologist teaches Harvard Medical School, psychotherapy practice Lexington, Massachusetts. specializes working kids learning differences families. He's also Understood expert.Gretchen: First though, we're talking Belinda, mom Florida definitely comes ADHD sleep challenges. Belinda 12-year-old son, she's calling Mr. B protect privacy, kind funny. refer 12-year-old I'm talking publicly makes neurodiverse, call Mr. 12, really good laugh that.Gretchen: Mr. B ADHD autistic, he's gone periods sleep major challenge. Belinda diagnoses, struggles.Amanda: grateful sharing experiences us. We're talking today ADHD affect sleep, something know issue family. get it, I'd really love know little bit son. like do?Belinda: Well, Mr. B, he's son. lets know right away tend get lot extra presents Christmas. he's bright kid. Let's see. plays soccer. loves Roblox, he's playing actually right now. likes Legos. loves read. He's got good sense humor young child. He's little bit precocious. diagnosed ADHD fairly recently, 2018. also diagnosed anxiety time. 2020, went back even though medication, like, "Something's still little off." diagnosed autism. Personally, also recently diagnosed spectrum well, ADHD anxiety. drove get diagnosis felt lot experiences, lot ways reacting, almost like looking mirror. brought back lot past, lot childhood. He's like mini me. It's interesting.Amanda: sounds like lot fun. tell Mr. 12 also ADHD uses phrase "autistic." Mr. 12 ADHD autistic, probably playing something like Roblox room right too.Gretchen: want move sleep, Amanda?Amanda: Yeah, think should. Well, would love move sleep. don't sleep well, would love move sleep. know ADHD make going sleep difficult, I'd really like know looked like son. I'm really wondering it's something also struggled with.Belinda: baby, Spanish, say "ojo duro," means hard eye, difficult fall asleep. 4 a.m. witching hour. he'd put bed, like clockwork 4 a.m. husband would go tend baby. said eyes would like darkness, like kind looking around. infant. mean, 6 months old. Naps were, mean, difficult get nap. would literally drive around fell asleep. also made bit difficult well hearing mom friends, "Oh, mine sleeps night. angel." you're like, "Ugh."Gretchen: Oh, geez.Belinda: yeah, way. Sleep still struggle day me. husband's opposite. lie down, go sleep. problem.Amanda: That's house too. There's something makes want like, "I'm happy also wake up, we're awake right too."Belinda: Yeah.Gretchen: wondered could tell us little bit son baby. know said drove around. things worked? know struggle lots families.Belinda: Yes. things typically used babies, rocking chairs, swaddling. made sure temperature right sleep. slept, wearing. Music soothing. tried also white noise. lot laying chest, lot feel like snuggled, lot rocking, lot late nights.Amanda: goodness. Mr. 12 much way. actually writing book baby, would swaddle him. typing. say today I'm still brushing crumbs top head eating him.Belinda: Yes.Amanda: What's sleep like now?Belinda: Well, started sixth grade. COVID hit state, lockdown. homeschooling. really affected anxiety levels. beforehand sleeping night, post quarantine lockdown now, cannot fall asleep alone. It's real struggle. fall asleep unless someone him. wake middle night, come bedroom, unable sleep. go sleep psychologist. tried medication.Now, say baby, lived beach lived forests, kind cool situation have. beach would tire out. We'd go he'd play waves sand make sand castles. would fall asleep way home. you're talking crumbs, would sand pillow. that's one thing could suggest, younger, definitely tucker out. think nature really great way tire kids get nice fresh air lungs. then, mean, pandemic really made difference. Spotify playlist, weighted blankets, night-light. tried teas. mean, think name it, probably tried it.Amanda: worry going sleep?Belinda: Well, honestly, happens sometimes comes alive night he'll want conversations. thing say conversations important. tells something bothering him, what's heart. He'll start questions, like deep philosophical conversations bedtime. that's OK, I'm like, "It's 11. got go bed. got 6 school." try curb answering quick saying, "Hey, let's talk morning."Gretchen: daughter is... mean, unpacks everything right before.Belinda: old she?Gretchen: 13. everything gets unpacked right then. like said, it's struggle, important conversations want have, 10:00 night. wonder what's Spotify playlist. kinds things helping?Belinda: We've actually looked ADHD sleep. we'll put keywords in, lists come up. There's one that's classical guitar classical piano, need make sure play least eight hours. That's key. stop, could great music, stops hour three hours, he'll up.Amanda: Interesting.Belinda: best tip would be, make sure it's long play loop.Gretchen: question around though.Belinda: Yes.Gretchen: know lots times families worry putting phones bed kids. son ever get distracted anything else he...?Belinda: Well, it's old phone.Gretchen: OK.Belinda: Wi-Fi, calling out. put parentals controls put timer. it's fixed thing access overnight would Spotify go flashlight. might it.Gretchen: No, that's helpful.Amanda: That's good tip.Gretchen: That's good tip. That's good tip.Belinda: Yeah. Now, need someone him. tips. night-lights, music, still needs comfort someone there. weighted blanket. mean, feel like I've tried done pretty much everything. way look is, I'm '80s kid. diagnoses, things, plus South American
The difference between ADHD and autism
Trouble paying attention to people. Being constantly on the move. Invading personal space, not reading social cues well, and having meltdowns. These can all be signs of both ADHD and autism. And the two conditions can occur together.So what’s the difference between ADHD and autism, also known as autism spectrum disorder (ASD)? This table breaks down some of the key differences between them.Learn more about how ADHD is diagnosed. Read one mom’s story of having kids who have both ADHD and autism. And get strategies to help kids manage sensory processing challenges.
In ItBringing sensory differences into kids’ books with Lindsey Rowe Parker
The hosts interview kids’ book author Lindsey Rowe Parker. She talks about her new picture book about sensory differences in kids.From the colors of the classroom to the noises of the playground, school can be overwhelming for kids with sensory processing challenges. One author has turned these experiences into a new picture book. The book aims to help kids who have trouble processing sensory information. In this episode of In It, hosts Gretchen Vierstra and Rachel Bozek talk with Lindsey Rowe Parker, author of Wiggles, Stomps and Squeezes: Calming My Jitters at School. It’s the second in a series of picture books about sensory differences for kids.Lindsey was a child with sensory differences. And now she’s a parent to a daughter with autism and a son who is neurodivergent. Lindsey begins by reading a section of the book. Then she talks about the importance of representation in children’s books. She also shares some of the sensory challenges she faced as a kid, and other real-life stories she included in the book. Related resourcesWiggles, Stomps and Squeezes: Calming My Jitters at SchoolSensory processing challenges fact sheet Surviving the holidays with sensory processing challengesSummer survival guide: Hacks to help your family thrive Episode TranscriptGretchen: From the Understood Podcast Network, this is "In It," a podcast about the ins and outs... Rachel: ...the ups and downs...Gretchen: ...of supporting kids who learn and think differently. I'm Gretchen Vierstra, a former classroom teacher and an editor here at Understood. Rachel: And I'm Rachel Bozek, a writer and editor with a family that's definitely in it. Today, we're calming the jitters with children's book author Lindsey Rowe Parker.Gretchen: Lindsey has a new book coming out, all about a girl with sensory differences. It's called "Wiggles, Stomps and Squeezes: Calming My jitters at School." And it's the second in a series. Rachel: Lindsey herself was a child with sensory differences and is now a mom to a daughter with autism and a son who's neurodivergent. Gretchen: We wanted to talk to her about the importance of representation in children's books for kids like she was, and for her own kids. So, welcome to the podcast, Lindsey. Lindsey: Thank you for having me. Gretchen: We're so excited to talk to you. And we wanted to start by congratulating you on your new book. So exciting. We really, really love it. And so, we were wondering if you could actually read us, maybe the first few pages from it so we can give our listeners a sense of it? Lindsey: Absolutely. "I need to wiggle. I need to spin. I can't explain why. 'Today is a school day, school day!' Mom sings. She takes my hand and we spin, spin, spin around. She makes me giggle with her goofy songs. 'What would you like to wear today?' She asks. I want my favorite shirt. The one with the dinosaur. I point to it. It's in the stinky pile. 'Hmhm. Can we try another shirt with the planets today? \That one is clean and we'll get the dino shirt washed for tomorrow.' I feel my jitters start to bubble inside. Little bubbles. Like the kind in orange soda. She shows me the shirt with the planets. They have sparkles and they match my shoes. I nod. I do like planets, especially Jupiter. That's my favorite. She takes my hand and we spin, spin, spin around. And that's what calms my jitters down." Rachel: Thank you so much for that. And since the listeners can't see the illustrations, I just want to say that the illustrations by Rebecca Burgess really give the reader a feeling of the narrator's sensory experience. Like the spinning and the sounds of the bus, and like, the loudness of the letters on the page that are coming off, you know, from the teacher. I just, I really loved that part of it as well. Lindsey: Thank you. Well, and when I was looking for an illustrator — because we started this process back in, oh goodness, 2019 maybe — and I knew I wanted an illustrator that had the lived experience of sensory experiences. Because it's kind of a, if you don't know what you're looking for, not quite sure how to share that information. So, I reached out to Rebecca on Twitter and I was like, "Hey, I have a crazy idea. Would you read this manuscript? And I would be so honored if you would consider doing a project with me." And they jumped at the opportunity. They themselves are an autistic creator. And since our original partnership, they've gone on to illustrate a bunch of other books. And I'm so excited for that journey for them. I'm so, so lucky to have them on this project with me. Gretchen: That's awesome. So, I'd like to know what inspired you to write a book about a girl with sensory differences. Lindsey: So, I actually didn't start out to write a book about sensory differences. I was just writing little snippets, from, you know, my day with my children. I do have a little girl and a little boy. Both are neurodivergent. One is autistic, and the other, has not been diagnosed yet, but very, very clearly it runs in our family. So, I kind of just was writing these little vignettes or these little snippets of the day. And after going through a lot of occupational therapy with my daughter, I kind of started to see the differences in sensory experiences, and I was able to identify a lot more of the things that I grew up not knowing were sensory differences, I just thought I was weird. And so, kind of through that process, this evolved from just a little snippets of our day to identifying like, "Oh, what I'm actually writing is about sensory challenges." And I like "Oh!" and light bulb went on and I was like, "OK, this makes so much more sense." And we also didn't start out to do this as a series. It was just going to be one book. You know, I'm an unknown author, and it was my first book. And, you know, I thought that was going to be a one and done. And, because of the response from the first book and the need in that space in children's literature for — not only books about sensory differences, but books that celebrate neurodivergence in general — you know, we decided to keep going with it because the response was wonderful. And so, that just kind of I was like, "OK, we're going to keep going, because it's needed." Gretchen: You said when you were working with your own children that — occupational therapy for example — you looked back at your own childhood and sensed, "Huh, maybe some of this was me, too." Would you mind sharing some of the things you realized, maybe you thought you would label as just like, "Quirky," but actually were sensory differences? Lindsey: Oh, yeah. Absolutely. I had so much internal narrative of myself that I've collected over my 40-plus years of — you know, I have ADHD and sensory differences — I was labeled a dreamer. I was labeled as not applying myself. Spacey, obnoxious, like all those things. And it just kind of becomes your internal dialogue after years and years. And going through that process of learning about sensory differences, specifically during my daughter's, you know, therapies, I was like, "Oh, wait a minute." So, I also then got, unfortunately got into a car accident and had to go do some neuropsychological testing. And that's when I actually got diagnosed, was after that. So, while that was a, you know, a hard time of my life, something really beautiful came out of that, which was a diagnosis that I didn't even know that I needed. And it just made so many things make sense. And then I was able to kind of retrain myself in my own narrative and be like, "No, you're not lazy. You're not spacey. You're not, you know — well, maybe I am obnoxious. I'm not sure — and all these things that I thought that I was. I'm like "No, that is not what it is." I think I have ADHD and I have sensory differences and these things I can manage, I can find supports, and I can give myself a little bit of grace, too. And I'm so grateful for that to have happened, even though I'm an adult, it has taught me so much of how I can try and help my kids not create those internal narratives for themselves. Gretchen: Are any of the sensory experiences in the book, ones that either you've experienced in your childhood or that your own children experience now?Lindsey: Oh, absolutely. The food ones, the clothing. I mean, one of the ones that was actually me, in this new book, is when the child is putting their face on the table and the table is really cool. And they're feeling the scratches or the divots in the table. And like, that exactly happened to me as a kid. I would just sit there when I was overwhelmed with whatever was happening in the classroom. I would then just, you know, feel senses around me. So, I put my warm face on a cool table. And it looks like, who knows what it looks like to the teacher that you're doing, or to the other kids. But what you're doing is you're just trying to regulate yourself. And it varies so much from person to person, as far as like, what things are difficult for them. Gretchen: That example you just gave of the head on the cool table and like feeling the little cracks on the desk like, yeah, you're right. To someone from the outside — like, I'm a former classroom teacher — I don't know, I might have looked at the kid and wondered what they were doing. So it's really informative, this book, to teach people that, actually this might be a way that they're calming themselves down amidst all of the commotion that's going around them. Lindsey: Yeah. I mean, it's fun and almost kind of, healing to like, kind of put it on the page and have the outcome be something that maybe didn't actually happen the way that I would have liked it to happen. Some of these responses that we show in the book are not necessarily how those moments actually played out. This is more of how I wish they could have played out. Rachel: Yeah. And I also really liked how understanding, like you said, that the outcome wasn't always how it really went for you or for either of your kids. Because there were moments while I was reading where I'm like, "Oh no, how is this going to go?" And it went OK. So, thanks for that. And so, another thing that struck me in the book is the repeated phrase, "I can't explain why." Like, when the narrator is saying, like, "I need to wiggle, I need to spin. I can't explain why." And it seems like there's something really important that you wanted to get across there. Can you talk a little bit about why you left it there, that you didn't add an explanation or anything specific about a labeling or a diagnosis? Lindsey: That's a great question. I think while I was crafting this, I had a lot of different authors — I was in a group, a critique group — we would get together and read each other's manuscripts. And part of that was saying, like, "How are you going to wrap this up? Like, how is this going to go down?" And, you know, I was like, "I don't know if we need to explain why. I don't know if a child explains themselves like, you just feel it. It is just your reality." And one of my critique partners, he was just like, "That's it. That is your repetition. That is your 'I can't explain why.'" And I was like, "Huh!" And he was so right. And you don't necessarily need to explain why all the time. You just need to be accepted, and supported. And so, even if the child or the adults or whomever it is can't tell you why they're doing the things that they're doing or why they're feeling the things that they're feeling, it doesn't matter. We still need to support and, you know, accept people and meet them where they're at. Gretchen: Lindsey, we mentioned this earlier that, we just appreciate how the story doesn't have, you know, a teacher coming in and saying, "What are you doing? Why are you doing that?" That the teacher is really supportive. And I feel like other authors might have gone the other way, because they might have thought it was more interesting, right? To have like, it's sort of like a children's movie. Some of those movies have these, like really harsh points because they think that that's what kids need. So, why did you choose to not add that? Why did you choose to have such a supportive teacher, supportive friends, etc? Lindsey: This was a definite choice. It took me actually a while to get this book published because, as I was shopping it around to different editors and you know, publishing houses, they were like, "Oh, we like it, but it's too quiet. Your story's too quiet." You know, "There's not enough drama in it. If you could make it a little more..." And I was like, it didn't sit right. And I understand that, you know, their job is to sell things. I get it. But for this specific, you know, I didn't want to do that. I didn't want to make it more than it needed to be. The arc in both of these stories is dramatic enough for the person experiencing it. More things don't need to be added to make that experience valid when other people see it. And so, that's partly why there is no like, huge explosion outside of just internally in that person's experience. And then having these supportive adult figures was so important to me and my illustrator for this particular series, because we want to model the way that it should go for kids. We want kids to see the way it should go for them. And, I was in another interview once with the first book and they said, "So, is this how you respond? And I was like, "Well, sometimes I can, sometimes I mess it up." You know? So, this is not like me doing all the things perfectly in this book. This is me showing what I would love to have happened. And I don't always get it right either. But modeling that type of support from adult figures in a kid's book, I thought was very important, and I was not willing to change that just to get it solved. Gretchen: Yeah, I agree. I mean, when my kids were little and we would watch, you know, the typical kids' movies that had those dramatic moments in them, they hated it because they felt unsafe. They felt like, "Well, what's going to happen? I'm scared." And so, I feel like this book is so great for kids, because they're reading it and they don't have to feel worried for the main character for the most part. And it does feel safe and warm, right? So, I like that about the book a lot. Rachel:Yeah I think it's nice to have a quiet story that is relatable for, especially for kids who maybe don't have a lot of quiet, because they're always getting the like, "What are you doing? Why are you doing that?" And now they're like, "Oh, it's OK here." So, yeah. I love that. So, Lindsey, you haven't just written these two books for your series — and I shouldn't say just two — but you've also recruited other children's book authors and creators to put out stories about sensory needs and challenges. Can you tell us a little bit about how that came about and what's come out of that campaign? Lindsey: Sure. So, I started seeing — as I got deeper down into the children's literature, like industry or environment or community, I guess you could say — I started seeing that there were actually a lot of books coming out specifically for, you know, neurodivergence, sensory differences by autistic authors and illustrators and creators. And I did not necessarily encourage them to write these books. They were already doing it. What I encouraged them to do was come together and not see each other as competition. And more see each other as like collaborators or community. And so, there's probably about 20 or so of us now that are either creators, illustrators, authors and even just advocates and other organizations. And then, during Sensory Differences Month in October, you know, I just really promote all of the different stories that are available and out there that have this, that's not the same story, but it is a similar feeling in the fact that, like, "You're not broken. There's nothing wrong with you, but this is an actual thing that people experience, and sometimes it's hard." And here are a lot of different resources for you to understand yourself, to know that you're not alone. And just to, to kind of like make a community of people who have the same goal. Gretchen: I'm wondering if you've heard from kids or parents and caregivers about your books, like, have you gotten any memorable feedback that's really stayed with you from those families? Lindsey: Yes. I have so many beautiful reviews that it just like each time I read one I tear up a little bit. But I think the one that got me the most, it was in person and I was at a children's hospital reading to the kids. And there were some parents there, and one of them came up to me after, and she was crying. She's like, "Thank you for seeing my child. No one sees my child." She's like, "You see them in this book and they can see themselves." And I was like, "Oooh." And I've heard that, you know, I don't wanna say many different times, but really is a very common thing for them to say. But having a mom in front of my face tell me, with tears in her eyes, that just got me pretty good in the heartstrings.Rachel:Yeah. So, looking ahead, do you have ideas for a next book in your "Wiggles, Stomps and Squeezes" series? Lindsey: Yes I do. Absolutely. So, we have the two — this next one I should actually be getting just like in three days. I can't wait to unbox it — I also have an activity book that goes along with it. But then, aside from those three pieces, I'm hoping to do, I mean, the dentist right now is a big one in our home. So, that's a rough one. So, I'm thinking that might be one of the next ones. Holidays are usually like, sensory nightmares. They can also be really exciting for sensory, because I mean, I'm a seeker for the most part, a sensory seeker. And I love lights and loud noises and all this kind of stuff. But at some point it gets overwhelming. So, I might explore that a little bit. And then travel, you know, going on airplanes or going to new places with your family. That one can also be really fun and exciting, but hard. So, those are kind of the three that I'm toying with manuscripts right now. Gretchen: Those are all so good. I must say, I could really benefit from the dentist. Rachel: Yes, and we did episodes about the overload of the holidays and of traveling. Gretchen: We have, yes. So, we'll have those in the show notes. Rachel: Yeah. But like, yeah, those are big ones. Gretchen: Those are big ones. Lindsey: Yeah. And I try and pull from things that we experience personally, because I feel like most of the time it's so much more authentic to write from something that you understand and know. So, I'm sure there's a million other scenarios that I could write about, but because those are right now pretty, pretty intense for our family, I think that's why I'm gravitating towards those. Gretchen: Yeah. Do you have anything else you want to share before we wrap up? Lindsey: I just... I want kids to know that they are not weird or broken, ever. They're not. And it's — whether that's through books like mine or through other, you know, ways to find that out — I think it seems like there's a shift in the way that we talk about disability. And it seems like it's getting better and more inclusive and more accepting. And I'm very happy to be part of that. And I want to keep pushing that message like, "Hey, you're not broken." Rachel: We wholeheartedly agree. Thank you so much. This was really a great conversation. It was so nice to get to know you. Gretchen: Yes. Thank you for talking with us. Lindsey: Thank you for having me! I was so excited. I love Understood, I think it's such a great organization.Rachel: Lindsey Rowe Parker's new book is called "Wiggles, Stomps and Squeezes: Calming My Jitters at School." Gretchen: You've been listening to "In It" from the Understood Podcast Network.Rachel: This show is for you. So we want to make sure you're getting what you need. Email us at init@understood.org to share your thoughts. We love hearing from you.Gretchen: If you want to learn more about the topics we've covered today, check out our show notes. We include more resources as well as links to anything we mentioned in the episode. Rachel: Understood.org is a resource dedicated to helping people who learn and think differently discover their potential and thrive. Learn more at understood.org/mission. Gretchen: "In It" is produced by Julie Subrin. Ilana Millner is our production director. Justin D. Wright mixes the show. Mike Ericco wrote our theme music. Rachel: For the Understood Podcast Network, Laura Key is our editorial director, Scott Cocchiere is our creative director, and Seth Melnick is our executive producer. Thanks for listening.Gretchen: And thanks for always being "in it" with us.
Hannah Gadsby’s “Douglas” and a later-in-life autism diagnosis
We know that 2020 has been a stressful year for employers, employees, and job seekers. So here’s a snapshot of something we’ve found useful or motivating. Whether it’s a tip for how to stay on top of work, or something to take your mind off the news, we hope it’ll be a positive and helpful way to round off your week.Australian comedian Hannah Gadsby is probably best known for her comedy special, Nanette, which won her an Emmy in 2019.She’s followed it up with another comedy special, Douglas, which toured the U.S. last year and is now available on Netflix. In both shows, Gadsby talks about her later-in-life autism diagnosis, and how getting diagnosed helped her come to a better understanding of herself. Many people with autism are diagnosed later in life, or not at all — especially girls and women. And many people with disabilities or learning and thinking differences choose not to self-disclose at work. Gadsby’s description of her experience can help people who don’t have autism better understand their colleagues, employers, and employees who do.Here’s an interview in which Gadsby talks about her autism diagnosis and her approach to discussing it in her show.Douglas is available for streaming on Netflix.
In ItThis is how we make it through
In an article for the New York Times, Andrew Solomon wrote, “The fact that you wouldn’t have chosen something doesn’t mean you can’t find joyful meaning in it.” In an article for the New York Times, Andrew Solomon wrote, “The fact that you wouldn’t have chosen something doesn't mean you can't find joyful meaning in it.”In this episode, hosts Amanda Morin and Bob Cunningham hear from families about the (sometimes unexpected) ways joy creeps into everyday life — even on the most challenging days.From learning to ride a bike (as an adult!) to making fart noises at the dinner table, this is how families with kids who learn and think differently make it through.Listen in. Then subscribe to In It on iTunes, Spotify, Stitcher, or wherever you listen to podcasts.Episode transcriptAmanda: Hi. I'm Amanda Morin, a writer and in-house expert for Understood.org and a parent to kids who learn differently. Bob: And I'm Bob Cunningham. I'm a career educator and a parent. And I'm the executive director for learning development at Understood. Amanda: And we are "In It." Bob: This is a podcast from Understood. On this show, we hear from parents and caregivers and sometimes kids. And we'll offer support and advice for families whose kids are struggling with reading, math, focus, and other learning and thinking differences. Amanda: Today, we're talking about finding joy and beauty in everyday life — while also managing the challenges that come with raising kids who learn differently. The idea for this episode started with an article I read in the New York Times, by Andrew Solomon. His name may be familiar. He writes a lot about families that are different in some way. This article was about the work we as a society need to do to overcome these sort of pervasive negative and kind of uninformed views of disability. Amanda: And there was one line in it that I especially love as a parent of kids with autism and ADHD. Solomon wrote, "The fact that you wouldn't have chosen something doesn't mean you can't find joyful meaning in it." And boy, did that resonate with me.Amanda: It's nice to start talking about the great things about having kids, regardless of whether they learn anything differently. Because a lot of the time we're talking about what we find difficult, and to be able to talk about what's really just joyous in having kids, I think, is something every parent probably should be looking at, at some point or another. But first, Bob, tell me what "joy" means to you. Bob: So for me, "joy" is that little bit of overwhelming feeling you get, right? So it goes beyond just being happy or being excited. It's that kind of sense of being overwhelmed by what is happening that makes you feel so happy. Amanda: I, you know, I think your definition of "joy" is very similar to mine. I don't think of it as sort of that everyday contentment that, you know, things are going well. It's that moment that makes you like laugh out loud. So once we started talking about this, I was reminded of a family my kids and I got to hang out with over the summer, Lindsay and Kevin. And we're just going to use their first names today. They're raising two kids who learn and think differently. And when I found they and their family were going to be passing through my town in Maine, I suggested we meet up. And we all went out to lunch, and our time together was — it just made a really powerful impression on me. First of all, our two boys are very close in age, never had met, and they were just joyous together. And then there was this one moment after lunch when Kevin and his son Sam just started skipping down the street like they didn't have a care in the world. Kevin, do you remember skipping down the street like that? Kevin: I do. Yeah. And we'd just had a good lunch and we were — he was feeling silly. And I think what's important to say about that is that he used to not be able to skip. You know, he wears braces on his feet. And that was a challenge for him to get to the point where even could skip. So when he wants to skip now, I'm there. I want to skip with him. I know how hard he worked to get there and how much fun it is for him. So I take those chances whenever I get them. Amanda: Sam is 8 years old. His sister Maggie is 12. When asked to describe Maggie, Lindsay says right off that she is ferociously brave. Lindsay: She is the person who will do parasailing 400 feet in the air with my mom.Amanda: Maggie loves art, theater, soccer, and science. Lindsay says she has what's called a language-based learning disability. Lindsay: So for her, her working memory and her short-term memory are smaller than other kids. And so for her what that means is it's sometimes hard for her to comprehend or to take multi-step directions. And sometimes it's really hard for her to express herself. Amanda: Maggie's brother Sam has a different personality. Lindsay says he's super silly, very emotionally expressive, and all heart. Lindsay: People at school call him the mayor, because he goes around and says hi to everybody. Amanda: Sam has some difficulty with reading like his sister. But most of his challenges are physical. He struggles more with motor skills. Kevin and Lindsay talk about their kids with so much warmth and humor and pride, but they say it took them some work to get there. Both Kevin and Lindsay loved school when they were little. And success came easily to them, so they figured their kids would be the same. When Maggie's kindergarten teacher first told them she thought there was some sort of problem, they were floored. Kevin: We were blindsided with that news in kindergarten and it really — really took us back. You know, there'd never been any signs in preschool. The teachers always said, "Oh, she's such a delight. She's got a great attitude. She's doing just great." They didn't catch any of this stuff because she put on such a brave face. And so it really — it surprised us. And also, we didn't know how to deal with it, because it was not something that we ourselves had been through, right?Amanda: What was it to you when it looked like school wasn't going to be as easy for her as it had been for you? Kevin: It was definitely disappointing. I mean, I mean, because, you know, we had a certain — you know when you have kids, you have a certain vision of how things are going to go. And it's always rosy and optimistic, right? But parenthood is a series of steps where you realize that your kids are like everyone else. So they're not perfect. And we had steps like this before. Both Maggie and Sam have vision problems. So they had to get glasses when they were really young. And that was our first moment of, oh, wait, our kids aren't perfect, you know? And it seems like such a stupid thing now. But at the time, just Maggie getting glasses was heartbreaking for us. Now it's a tiny thing. We don't even think about it, you know. The news in kindergarten was an even bigger blow to that idea that this wasn't the path that we'd imagined for our kids. First Maggie, then — and then Sam later on. And yet, you know, that's the path they're on. And you can get upset that it's not the perfect way it's gonna be. Or you can realize this is who your kid is and you've got to meet them where they are. Amanda: It sounds like they've redefined your expectations of what parenting would be. Does that sound accurate? Lindsay: A hundred percent, I think in two ways. I was thinking about this idea of joy. And I think, you know, we live in a university town that sends tons of kids to Ivy League colleges. And, you know, the conversations at the school board meeting and around town are just about how stressed our kids are. And there's this great author that calls it the checklisted childhood. Like we're doing everything we can to sort of build our kids' resumes so they get into the perfect college and get the perfect job. So I would say one of the most beautiful ways, and one of the most freeing things that having the kids we have did was — it kind of threw all of that out the window. Like I feel very free that our kids do not have to compete with other kids. And that is not saying we're lowering our expectations at all for our kids. It's saying, what we're gonna do is really figure out the kids we have and what's going to make them thrive. And so it doesn't matter if so-and-so is going to college and so-and-so is going on to do this. In some way, that was like so relieving to not even have to be a part of that conversation or to feel influenced by it. Because I think we learn early on like we have to know the kids we have, and the way that they're going to be the most successful is really figuring out what's right for them. Amanda: But parenting their kids hasn't just been a matter of adjusting expectations. It's also allowed for some incredible growth. Like when Lindsay saw Maggie struggling to learn how to ride a bike.Lindsay: I never learned how to ride a bike. Lindsay: And the reason I never learned how to ride a bike was not for lack of trying. Or my parents trying. So we did the traditional thing where my father held on to the back seat of my bike. And, you know, what's supposed to happen is you're supposed to be riding and all of a sudden your dad lets go in you're supposed to have this great moment where you realize you're doing it. And what actually happened was I just kept falling and falling and falling. And I did not like to fail as a kid. So I decided I was not going to ride a bike because my father was clearly sabotaging me, which doesn't make sense now. But anyway, fast-forward to Maggie learning how to ride a bike. I'm 38 years old. She's trying so hard. And, you know, I feel like such a hypocrite because I'm telling — and this is so true of so many things in her life where I'm pushing her to be brave and bold and do all these things when I'm not really doing them myself. So she and I basically made a deal that if she learned how to ride a bike without me holding on to it, that I would go out, I would buy a bike, and I would learn to ride. Lindsay: And so that's exactly what we did. It was not pretty. Her elementary school had a big hill that goes down sort of, a street that goes down a big hill to her school. And so I used to make her — she really wanted to ride bikes to school — so I would make her go to school a half an hour early because I didn't want any of the adults to see me flying down the hill on a bike, screaming and terrified and potentially falling. So we would go early until I built up the confidence to just be able to ride normally. And now we now we ride all the time.Lindsay: And so I'm really grateful for her that, you know, I can't tell her to be brave and tell her to keep trying when it's hard if I don't do it myself. Bob: We heard from some of you about how you found joy raising kids with differences. Here's Beth.Beth: Patrick was born with Down syndrome, but he was also born with a heart defect and he had to be — have open heart surgery at 9 weeks old. And I had two other older children, Jack and Mary Kate. But I wasn't sure if Patrick was my last child or not. And so every part of his babyhood felt so special. And I savored it. And I felt gifted with that slow unfolding. It felt like those slow-motion videos that you see of a flower unfolding. Beth: In fact, I remember so clearly one time watching him spend an entire day figuring out how to open a kitchen cupboard. And as he was doing that, I thought, you know, Jack and Mary Kate just figured this out so quickly. I never even noticed when they figured it out. They — I mean, it was like I opened my eyes and now they know how to open the cupboard. Here, I'm watching you figure it out all day long. And by the end of the day, he figured it out. And it was such a special moment to get to see him really figuring these things out. Beth: I wasn't upset with him that it took him longer. I just thought it was cool that I could notice it. Bob: So I can remember a mom talking to me at length about her son. And her son had a lot of difficulty with a lot of things, especially around school, and that transferred into a lot of difficulty with a lot of things at home. Bob: And so one of the things that he started to do when he was kind of a young teenager is he really jumped into cooking. Fortunately for him, his mom and dad realized like, oh, this is really turning him on. He's really excited about this, right? So they encouraged it. They started to take him places to learn more about cooking. And the mom was, you know, talking to me about this over a period of months and then over a period of a year and stuff. And I can vividly remember kind of the last conversation I had with her about it. And it had entirely shifted from how into cooking her son became, to how into cooking she became. And this was somebody who never really liked to cook and was a very busy executive. And I remember her saying in the end, if it hadn't been for how excited he got, I never would have figured out that I actually love cooking. Amanda: Oh, that's so cool. So like she found joy through him finding his passion.Bob: Yeah. Amanda: And you know, and I think that's so important because we need to find those moments of joy, like whether it's from our kids, whether it's in our kids, or those kinds of things. And we definitely heard that from Lindsay and Kevin. But I don't want to give the impression that Lindsay and Kevin are superhuman and always patient and loving and understanding parents, because that's setting the bar pretty high. And they are the first to tell you that it's not moments of beauty and grace all day, every day. Kevin: I remember, we had a — we were having dinner one time, and it was one of those nights where both kids were acting up for whatever reason. And I'm not even sure it had anything to do with their differences. But it's just, you know, it's like a stressful night. We'd all had kind of a crappy day and we were all in a snippy mood. It was a very serious, tense moment. And Lindsay just stopped. She was about to lose it. And she put her mouth to her upper forearm and made a fart noise. And it was hysterical. It just cut through the tension of the table. And we all just started howling. It was just stupid and silly. And it just brought us all back to: What are we upset about? What are we doing here? They're kids! Have fun with them. Amanda: Such good advice, right? They're kids. Bob: Very good advice. And you know, we heard from another parent, Michelle, whose 17-year-old son Avi has autism. Michelle tells us she's gotten a lot of joy out of raising Avi, and she actually credits him with making his three siblings kinder people and with bringing lots of music and dancing into the house. But that doesn't mean she never struggles.Michelle: You know, it's an interesting balancing act, because I want to allow myself the permission to be human and to say sometimes this is really hard because sometimes it is really hard. And I feel like not allowing myself to understand that — and experiencing that — is not fair to myself, you know? And I don't want it to get pent up and turn into resentment. So usually, like in those moments when I feel that way, my husband or I — we're very good at bouncing off of each other. So neither one of us are allowed to be in one of those slumps at the same time. Michelle: If I'm in a slump first, he's not allowed to be and vice versa. That's number one. Number two is that we'll often remind ourselves of something that Avi has said or done that will just turn us into laughing within minutes. So somehow we try to bring in some of what who Avi is and remembering that great sense of humor and remembering that great, fun-loving, musical, happy kid. And that kind of helps bring us up. And I always try to remind myself that I think Avi's biggest problem with autism is us — meaning we are working on trying to fit him into a world that he doesn't naturally fit into. Michelle: But if he's not being pushed to fit into that world that he doesn't actually fit into and he is being allowed to play, dance, and sing and do what he wants, and it doesn't matter if he does that in a grocery store, because we're not worried about appropriateness, he's fine and happy. Michelle: You know, sometimes trying to remind myself about that happy kid, and that focus and whatever that issue is that's bothering me at the moment, can often usually just pull me out. Bob: She's so right about the grocery store. And, you know, when you have kids with stuff going on, other people think that's difficult for you or you need pity. Kevin, he really bristles at that notion. Kevin: When Maggie gets down about herself and the challenges she faces, we've actually pulled over the car one time and be like, look, all your friends have something to deal with, too. That one is emotionally fragile and cries on the soccer field anytime the ball gets taken from her. That one, you know, can't focus on this and that. Every kid is imperfect, right? And we just happen to know the way in which ours are imperfect. That doesn't mean they're broken or bad or wrong. Kevin: It's just that they're different, right? Every kid is different. And so there are these parents who I think, look at you like, oh, well, you must be dealing with it. But you're dealing with something else. I know that your kids have some issues, too. And if you don't know it yet, it's coming at some point, right?Amanda: Right. Kevin: Don't look at me. Look at your kids. Bob: So that's Kevin's message to folks who aren't raising kids who learn and think differently. Amanda: And here's Lindsay's message for those who are: That joy you're cultivating isn't just important for you. Lindsay: I think if we send them the message that there isn't room for joy or that this is so hard or such a life sentence, like whether we realize it or not, our kids are picking up on that. And, you know, I think they're working harder than most adults we know, because they're grappling with so much. And so, you know, I think it's key to their survival — having that belief and being able to create those moments. You know, I think one of the ways that I've tried to keep my perspective on this is like dealing with my own stuff, getting help. Talking to other parents, finding a community of parents and kids who learn and think differently so that I'm not processing that stuff with them. That's not fair to them. I think, you know, our job — I think my parents were the ones who sort of said your job from now on is to be a detective and to watch them and to figure out what they're good at and figure out what brings them alive and to lean in to that. Lindsay: And so I guess my only closing thought is just how important our job is as parents to make those moments of joy and to make things right and to sort of be detectives and figure out what gives them joy and to do more of that. Amanda: Lindsay makes such a good point about the need to deal with your own stuff, right?Bob: For sure. And it's not only our own stuff. It's also kind of just the way we expect things to go, right? And we expect things to go a certain way because that's how it went for us, right? That's how it went for us when we were kids. That's how it went for our other child. That's how it went for the kids we watched our friends raise — that sort of stuff. So you get your ideas about the way it should go. It's not going to go the way you expected it to go, necessarily. I think we have as parents a lot of influence on it. But if you go into it thinking you're gonna control it, you're way off the mark. Amanda: And I think we have less influence than we actually think we do sometimes. I find myself having those moments where I'm like, wait a minute, why did I say no? Why am I not letting you do this thing that it doesn't matter if you do or not? It's these things as parents, we have sort of let go off and then just like finding the humor in it. Bob: The other thing is, look, you know, I have to remember, my wife has to remember, all of our listeners have to remember: Parenting is a long game, right? It's what happens over time. And each moment is far less important than you think it might be. So if something doesn't go well or you don't react the way you think you should or you have, you know, spent the last couple years really focusing on what's wrong and what's a problem and how can we help and what can we do better, it's never too late to sort of say, hey, let's start. You know, every week we're going to talk about one thing that was an experience of joy for all of us. Amanda: You've been listening to "In It," a podcast from Understood. Our website is Understood.org, where you can find all sorts of free resources for people raising kids who learn and think differently. Bob: We also really want to hear what you think of our show. Go to u.org/podcast to share your thoughts and also to find resources. That's the letter "U" as in Understood, dot O R G slash podcast. Amanda: You can also rate and review us on Apple Podcast, iTunes, Spotify — wherever you download your podcasts from. It's a great way to let other people know about "In It." And if you like what you heard today, please tell somebody about it. Send it to somebody who needs to find a little joy in raising their child. Or just send a link to your child's teacher. Bob: You can also subscribe to "In It" on Apple Podcasts. Follow us on Spotify or keep up with us however you take your podcasts. Between episodes, you can find Understood on Facebook, Instagram, Pinterest, or YouTube. And you can visit our website, U — that's the letter "U" — dot o r g.Bob: Our show is produced by Julie Subrin and Sara Ivry. Mike Errico wrote our theme music, and Laura Kusnyer is our executive director of editorial content. Amanda: Thanks for being in it with us. Bob: "In It" is a production of Understood.
In ItWhen your kid is hard to like
Parents rarely admit it, but sometimes our kids are hard to like. If you’ve thought this before, know you’re not alone. Parents rarely admit it, but sometimes our kids are hard to like. If you’ve thought this before, know you’re not alone.As much as we love our children, they don’t always act in ways that match our expectations. In this episode, hosts Amanda Morin and Bob Cunningham talk about how having trouble connecting with your child is a perfectly normal part of parenting.Listen in. Then hear from an expert on what to do when you and your child don’t “get” each other.Subscribe to In It on iTunes, Spotify, Stitcher, or wherever you listen to podcasts.Episode transcriptAmanda: Hi. I'm Amanda Morin, a writer, an in-house expert for Understood.org, and a parent to kids who learn differently. Bob: And I'm Bob Cunningham. I'm a career educator and a parent. And I'm the executive director for learning development at Understood. Amanda: And we are "In It." Bob: "In It" is a podcast from Understood. On this show, we talk to parents, caregivers, and sometimes kids. We offer support and advice for families whose kids are struggling with reading, math, focus, and other learning and thinking differences. Amanda: Today, we're talking about connecting with our kids, which is not as easy as it sounds. Bob: And about how sometimes being the parent our kid needs us to be means letting go of everything we thought we knew about being a good parent. Amanda: I'm wondering if you can tell us a little bit about your daughter and what she's like. Laura: Well, she's 11 years old. She is very, very creative, very opinionated. And she's a wonderful person in many, many ways. And she's also incredibly difficult to parent in many, many ways. Amanda: That's Laura. She lives in the Pacific Northwest and she's mom to two kids: a 13-year-old son, who she says she's always kind of instinctively understood, and also an 11-year-old daughter, who she's really had to struggle to understand and connect with. Bob: Laura's daughter has ADHD and autism. And something about Laura's own wiring — her personality and ideas about parenting — have often made her feel like a failure when it came to raising her daughter. She's also felt angry and frustrated and guilty. Amanda: And these feelings are so common, but they're hard to talk about. That's what we want to explore today. And we're so grateful that Laura was willing to speak so candidly and really so thoughtfully about her experiences. Bob: So let's start from the beginning. Laura says her relationship with her daughter hasn't always been challenging. It got off to a pretty smooth start. Laura: She was mostly a very — I would even say an easy baby. She was very well attached. She liked to be held more than anything. She was a little hard to leave with other people. And the other, the only other difficulty we really had was that she didn't want to sleep. Amanda: Oh, my gosh. Laura: But then as she became a toddler, she was a very, very active toddler. And she was fearless as a toddler. And so things sort of started to spiral pretty quickly. Amanda: What did that spiral look like? Laura: Just feeling like things were out of control. I mean, literally, I remember in a parking lot once when she was about 2, I was getting her older brother out of his car seat and she just ran off into traffic and a car almost hit her. And I sort of just barely grabbed her in time. Amanda: Laura says she read every book she could find on behavior and discipline to find out how to manage what looked to her like "naughty" behavior. She tried time-outs. She tried positive reinforcement. She also admits she did a fair amount of yelling back then out of frustration and exhaustion, because none of the advice out there seemed to be working for her kid. Laura: Well, my daughter responds with a lot of anger and always has. That makes it harder to respond in a positive manner. You know, if a child is crying, it's easy to hug a child. But if a child is furious at you or even attacking you, then it's quite difficult to maintain that sympathy and empathy for where they are. Bob: Laura worried about the impact this volatile relationship was having on her whole family. But she also worried about how other people might see it. Laura: Especially given that she was so young and I was a pretty new parent, I think I've felt the most stigma from other parents at that point. And even not necessarily what other parents actually said to me. It was just my perception of what other people must be thinking when they saw me in public with my kids. I just felt like I didn't know what I was doing and it was going to be totally obvious to everybody else that I didn't know what I was doing. Amanda: Laura knew her parenting approach wasn't working, so she started looking to new sources for advice and support. For one thing, her whole family started therapy. Bob: And that led to some really big changes, starting with how she and her husband interpret their daughter's behavior. Laura: You know, especially when we were first starting out parenting her, you couldn't help but sort of devolve to the most negative outlook possible. You know, some words that might have come up would have been "headstrong" or "stubborn" or even "oppositional." And in time and with greater education, we came to realize that a lot of what we were perceiving as being oppositional behavior was really us not understanding what she needed and where she was right then. Amanda: Before you got to this place, were there messages in society that really made it hard for you to get to this place? Laura: Oh, very much so. Yeah. The whole idea of parental authority. What's the limit of it being a beneficial thing? I've had children that really, really pushed my traditional beliefs on that whole concept.Amanda: So you had to relinquish some of that parental authority to make this work. What have you done to let go of some of that parental authority? What does it look like in your house? Laura: Well, one thing it looks like is allowing my daughter to have a lot more individual control over things like when she's going to take a shower or bathe, and how often — even when she's going to wear her glasses, which, that was a big point of conflict for years because she's supposed to wear glasses. But she, her perception is that she doesn't necessarily need them all the time. And about a year ago, I just sort of threw in the towel and said, you know what? You are old enough to understand why you're supposed to be wearing your glasses and what's at stake if you don't wear your glasses. And it's not my problem anymore. And so she went for months without wearing them at all, and then started to realize that she needed glasses if she was going to be, you know, if she wasn't gonna be right up next to what the teacher was doing, she kind of needed to be able to see better. And so she would start to wear them at school. And she is actually pretty consistent about doing it. I'm not sure how clean she's keeping them. But like I said, at this point, I don't consider that my problem. Amanda: I think people underestimate, you know — when you're raising kids who are not neurotypical — I think people underestimate how much work goes into like having just a daily relationship with them.Laura: Yes. Yes. The mental and emotional energy that goes into it, you know, it can be exhausting. And you end up so physically tired and, you're like, but what have I been doing? I've just been trying to make things work. Amanda: Bob, that part of my conversation with Laura was so refreshing because I think it's just so common for parents to feel like, I am just holding on. I'm just trying to make it through today. Bob: Yeah, I agree. I think that's part of parenting. Doesn't matter who you are, who your kids are. I feel like that happens to all of us. And if, especially if this is your first child, I think you might not know that. But it's important. It's really important for us to remind ourselves and each other of that. Amanda: I will remind you if you remind me. Bob: Yes. Amanda: Laura and I talked about something else she struggled with — something so taboo, but that we know is not unique to her. Amanda: Have you ever had that moment where you actually think, I really am not sure I like this child? Laura: I have had that feeling. And I, at this point, I think of it as a feeling I've had in the past more than that I actively feel recently. But I certainly have gone through difficult periods as a parent when, you know, you just keep on going because you don't have much choice in the matter. I really think that it's kind of, it's a cliché to say, well, you don't pick your family. But really, you don't. And I think when we become parents, we have an idea that whatever issues we had with our own birth families that, you know, we're going to do it better. We're going to — it's not going to be like that for us. We're starting over fresh. But then the reality is that you get the family you get, and you can do your very best and still have big problems. Laura: I'm personally not a religious person, but I feel like I'm a moral person. And it's like that being a parent has really highlighted the morality of family life to me, and how to me it's a moral question of trying to do your best and making the best out of the situation that you have. And I guess by "best" I mean trying to be as connected and do the right thing with each other as much as you can. That is how I show my love for the people in my life. It doesn't really come down to like or dislike in the end. Amanda: Laura has really put some thought into this and knows what it looks like to not connect with her child. But struggling to connect with your kid can take so many different forms. Aaron Gouveia has written about this kind of struggle in a new book called "Raising Boys to Be Good Men." Aaron is a diehard sports fan and he thought his sons would be, too. We talked about how his sons have changed his idea of what it means to connect with his kids. Aaron: You know, before I had kids, I thought all the time about how I'd, you know, not only pass down that fandom, but also, you know, instill a love of sports in them, because I played three sports a year. I played basketball, baseball, soccer, you name it. You know, I wanted to play it. So, you know, I have three boys now. And, you know, I obviously push for them to be involved in sports, with my oldest, who's almost 12 now. And it quite frankly, just it never, never materialized like I thought it would. And I had a really hard time with that at first. You know, one of the times where I really knew that I had to adjust my thinking was when he was offered through school, some, you know, a variety of activities to choose from. And, you know, among those activities were the traditional sports, like football and things like that. But also Rainbow Loom. Back when that was a thing, you know, the kids making the multicolored bracelets. And, you know, he came to me and said, "Dad, you know, I'm going to play football." And I said, "You're going to play football? In what universe do you play football?" I said, "Look at all this other stuff." And he said, "Well, you know, I just want you to be happy. I know football is important to you." And, you know, I really felt bad at that point. I did. And I said, "Buddy, you know, I'm sorry if I put pressure on you to do that." I said, "You know, you love Rainbow Loom. You love making these bracelets. You should do that if you're happy." And he ended up doing that. And it's just it was a reminder that, you know, you get the kids you get and you need to celebrate them and be happy with them, even if they don't share what you like. And my kids have certainly taught me that. Amanda: So in terms of connection, in terms of your relationship with your daughter, what would a breakthrough in connection look like? Laura: Hmm. So I'm not sure some big moment is the way that our relationship has worked. It's more like it was investment, investment, investment, and then suddenly just recently we've been able to have better talks than we ever did before — and talks about how she sees the world, how she sees herself, how she sees other people. And it's just, it's just little things. It's not like we've had one big talk or anything. But I do feel like we're getting to a place where we could have that mother/daughter heart-to-heart that for a long time I never thought that we would get to be close to that. So that, it feels really good to be at least glimpsing that. Bob: Looking back, Laura has some regrets about how she parented in those early years.Laura: Even though I really needed to emphasize connection with her, I think I made a lot of mistakes. You know, if I had it to do over again, knowing what I know now, I would have parented very differently at that time. But I just didn't have the experience to know what I needed to be doing. Amanda: You know, I totally hear the regret there, but I also hear some self-compassion and self-reflection. And that's so important because the truth is, as parents, we can't know what we don't know. And all we can do is try our best even when we think our best isn't good enough. And that's such a good reminder that parenting is a long game. Bob: Yeah, kids don't actually remember what we think they're going to do as adults. As parents, like, we hang on to the time when it didn't go well or when I did this and I should have done that or oh, my gosh, did I just emotionally scar my child for life and that sort of stuff. And years later, like, we still remember that. The good news is that kids really don't. They might remember this or that, but it's never those things that we were so concerned that was actually gonna have a bad impact on them. Amanda: So what they really end up hating you for is when you told them they had to get their hair cut the day before class pictures — instead of when you screamed at them in front of their friends. Bob: Yeah. My daughter, she's not the most organized person in the world. And I can distinctly remember getting to a hotel and freaking out on her because the thing that she needed, she just didn't remember to bring. And when I look back on that trip, like that's what I remember the most, the feeling of, gosh, I never should have exploded that way. And when she remembers that trip, she remembers me making her leave the pool 10 minutes before she was ready. Amanda: That's a relief to know. Hopefully my children will follow your children's example. Amanda: You've been listening to "In It," a podcast from Understood. Our website is Understood.org, where you can find all sorts of free resources for people raising kids who learn and think differently. Bob: We'd like to hear what you think of our show. "In It" is for you. And we want to make sure that you're getting what you need. Go to U.org/podcast to share your thoughts and also to find resources. That's the letter "U" as in Understood dot O R G slash podcast. Amanda: You can subscribe to "In It" on Apple Podcasts, follow us on Spotify, or keep up with us however you listen to podcasts. And while you're there, please take a moment to rate and review us. It's a great way to let other people know about "In It." And if you like what you heard today, share it with your moms' group, share it at the PTA meeting, or share it with anyone else you think should hear it. Bob: Between episodes you can find Understood on Facebook, Instagram, Pinterest, and YouTube. Or you can visit our website: U, that's the letter "U," dot O R G. Our show is produced by Julie Subrin and Sara Ivry. Mike Errico wrote our theme music and Laura Kusnyer is our executive director of editorial content. Amanda: Thanks for listening, everyone, and thanks for always being in it with us. Bob: "In It" is a production of Understood.
How to ask for COVID-19 accommodations at work
Diabetes. Anxiety. HIV infection. Autism. These are only a few examples of the conditions that may count as a disability under the Americans with Disabilities Act (ADA). If you have a disability, you may be protected by the ADA. Qualified workers can use this law to ask for coronavirus accommodations at work. Many people have disabilities that could make COVID-19 more dangerous if they get it. And lots of workplaces are changing their rules and systems, which can create new problems for employees with disabilities. For example, a worker with hearing loss who relies on lip-reading may have trouble understanding people wearing masks. An employer might make an accommodation so the employee can continue to perform their job. An accommodation is a change at work that removes a barrier for an employee. In the example of the worker with hearing loss, an employer might make an accommodation by switching around shifts so the worker doesn’t need to work with customers. Many employees may not realize they’re protected by the ADA. And they may not know how this law protects people with disabilities from discrimination, including at work. Here are some facts about employee rights under the ADA, and some tips for asking about COVID-19 at work. Looking for a shareable printout? Download our fact sheet about workplace accommodations here.Who does the ADA protect?The ADA protects people with disabilities who are “qualified” workers. This means they meet the general requirements of the job and can perform its essential functions, with or without reasonable accommodations. The ADA applies to employers with 15 or more employees. What disabilities are covered by the ADA?The ADA considers a disability to be any “physical or mental impairment that substantially limits one or more major life activities.” There’s no comprehensive list of disabilities covered under the ADA, but many conditions qualify. Disabilities can be: Visible or invisible Physical, mental, or both Lifelong or temporary The ADA also protects workers from discrimination because of a past disability, or because an employer thinks the worker has a disability. How can the ADA help protect workers during the pandemic? Under the ADA, employers must provide reasonable workplace accommodations to workers with disabilities. Here are some examples of accommodations that employers have made due to the coronavirus: Changing job duties at a store so the employee has less interaction with the public Allowing a desk-based employee to work from home Offering changed or flexible schedules so fewer employees are in the same area at once Providing personal protective equipment such as gloves and masks It’s important to know that there’s no “one size fits all” when it comes to workplace accommodations. An accommodation that works in one case may not work in another, even if two workers have the same type of disability. How can I ask for accommodations related to the coronavirus at work?Start by talking to your manager and/or HR department. You can do this either in person or in writing. There’s no special form that you need to fill out to ask for reasonable accommodations under the ADA. But your workplace may offer a request form to make the process easier. Make sure to say that you’re requesting an accommodation because of a disability or medical condition. That will help your employer to understand that your request relates to the ADA. It’s also important to connect your request for an accommodation with your ability to do the essential functions of the job. Make clear that this is about need, not preference. Can I suggest a specific accommodation?You can suggest an accommodation that you think would work for you. Many employers will appreciate the guidance. But it’s possible that your employer will make another suggestion. A reasonable accommodation doesn’t have to be the specific accommodation that you request, as long as there’s another accommodation that would work just as well. Employers aren’t required to do things that fundamentally change their business. For example, an employee might ask to work remotely because of the coronavirus. But sometimes the essential functions of the job may be difficult to perform remotely. An example might be a restaurant server who needs to be in the restaurant in order to do the work. Your employer may engage in what’s called an interactive process. That means working with you to see if there’s a reasonable accommodation that works for everyone. Can my employer ask for more information about my disability?Your employer may ask for more specific information about the nature of your disability and how it relates to your ability to perform the essential functions of the job. The ADA permits employers to request documentation, such as a note from a doctor. But the law requires employers to keep that information confidential. Where can I find more information about COVID-19 accommodations in the workplace?Here are some ways to get more information about workplace accommodations and the ADA, including information related to COVID-19. Job Accommodation Network (JAN)The ADA and managing reasonable accommodation requests from employees with disabilities in response to COVID-19 Coronavirus (COVID-19), stress, and mental health conditions Engaging in the interactive process during the COVID-19 pandemicEqual Employment Opportunity Commission (EEOC)What you should know about COVID-19 and the ADA, the Rehabilitation Act, and other EEO lawsPandemic preparedness in the workplace and the Americans with Disabilities ActUnderstoodADA accommodations at work: What you need to knowUnderstanding invisible disabilities in the workplace30 examples of workplace accommodations you can put into practice
In ItHow to talk to your child’s pediatrician about ADHD and learning differences
Overwhelmed by talking with your child’s pediatrician about ADHD or learning differences? These tips can help.If your child is struggling at school or at home, and you think it may be related to ADHD or a learning difference, communication is key. Talking with your child’s pediatrician can be a first step to getting support. But sometimes it’s hard to know what to say to your child’s doctor. In this episode of In It, hosts Gretchen Vierstra and Rachel Bozek welcome behavioral pediatrician Dr. Nerissa Bauer. Dr. Bauer offers tips and strategies for talking with your child’s pediatrician about ADHD, anxiety, and more. Tune in to get her advice on questions to ask, materials to bring, and how to make the most of your appointment.Related resources5 steps to work with your pediatrician when your child is strugglingHow to organize your child’s IEP binder Learning disabilities and ADHD: Resources for patient educationTake N.O.T.E.: Are you wondering why your child is struggling?Check out Dr. Nerissa’s website, Let’s Talk Kids Health Episode transcriptGretchen: From the Understood Podcast Network, this is "In It," a podcast about the ins and outs... Rachel: ...the ups and downs,Gretchen: ...of supporting kids who learn and think differently. I'm Gretchen Vierstra, a former classroom teacher and an editor here at Understood. Rachel: And I'm Rachel Bozek, a writer and editor with a family that's definitely in it. Today, we're talking about how to work with pediatricians, so they understand and support you in raising your child who learns and thinks differently. Gretchen: In fact, Understood and the American Academy of Pediatrics have developed a resource hub, to help pediatricians start those important conversations with families. Rachel: Our guest today is a member of that academy. Dr. Nerissa Bauer is a behavioral pediatrician with a practice in Indianapolis. She also has a company and website called "Let's Talk Kids Health," where she offers interactive virtual courses for families raising kids with ADHD. Gretchen: We were delighted that she was able to join us. Well, Dr. Bauer, welcome to "In it." Nerissa: Thank you for having me. Gretchen: The first thing, let's do is, talk about yourself a little bit. So, where do you sit in that Venn diagram that has pediatricians on one side, and kids with learning and thinking differences on the other? Nerissa: Oh! I am somewhat in the middle, I would say. So, as a behavioral pediatrician, I tend to help families with kids who have ADHD, learning disabilities, autism, anxiety. And, I also myself have ADHD. I was just diagnosed a couple of years ago, late diagnosis. And then, I have my own kids with ADHD and anxiety as well. Rachel: So, you are really in the middle.Nerissa: I am in it. Yeah. Rachel: You're in the right place. Nerissa: Yes. Rachel: So, speaking to you with your pediatrician hat on now. If a parent is just starting to notice that their child is struggling in school, what should they do? Is this something they should share with their pediatrician? Nerissa: I will always urge families that, first of all, you have to trust your gut. You know your child the best. When you start thinking, "Gosh, something is amiss here," I really encourage parents to first go to their pediatrician. The pediatrician really is the person who's known your child, hopefully, you know, since birth — or at least have that long-standing relationship with you — so they've seen your child grow through those developmental stages. And together, they can help listen to your concerns, observe your child, talk with them directly, but then also help orchestrate like what's next? What other data do we need to fully understand how your child is functioning, both at home and school, to really delineate, is this something like ADHD? Is it a learning disability? Is it anxiety or is it a combination of these things, right? Or is it just that we need additional support at this time and continue to monitor? But the pediatrician really should always be a family's, you know, first step in helping to partner-decode some of these issues. Rachel: That makes a lot of sense. And, this is just a follow-up question related specifically to ADHD, do pediatricians prescribe medication for ADHD? Nerissa: They do, they do. Actually, there is a growing trend in the fact that over 50% of general pediatricians are now able to identify and co-manage ADHD in their practices. I will say, though, over the years, the complexity of ADHD has really risen. So, no longer are we only just seeing ADHD, especially after the pandemic. We're seeing kids with coexisting anxiety, depression. That complicates the picture. Or we're seeing kids much younger, also having attentional issues that many general pediatricians will then at that point say, "Oh. I'm not sure, so let's go on and refer." But I think that a lot more pediatricians do feel comfortable at least starting the initial workup, having that conversation with families, before deciding whether or not they need to enlist the help of someone like myself or a psychiatrist. Rachel: So, if a family kind of goes another route, right? and the child is diagnosed with ADHD before the conversation happens with the pediatrician, what is the process or what's the best way to go about sharing this with the pediatrician? It sounds like it should definitely be shared with the pediatrician, but how does that conversation work or what does it look like? Nerissa: Yes, that's a great question. I will often tell parents that I think it's, first of all, important to keep a binder of the most important documents that you are accruing as you're on this journey with your child. I mean, it is not uncommon for parents to, you know, go through testing and then have tutors and therapists and different people on their team. And what's most important is making sure everybody's on the same page. And oftentimes when you're talking with either the pediatrician and bringing them up to speed, or a specialist new to the team, it's so helpful to have those documents in a binder along with contact information. So that when people ask you, "Who has done this? When was the date of this? Did you try this?" You know, you have that information at your fingertips. And, you know, I can't tell you how much time that helps to save so that we can just, you know, kind of keep moving forward. Rachel: We have a resource actually on Understood, called the IEP binder. It sounds like that could be tailored to just like your general binder, right? Nerissa: Yes, absolutely. Rachel: Yeah. We recommend contacts, all that kind of documentation. And so, is there ever too much information though, right? So, it sounds like you definitely want to tell your doctor about any diagnosis your child may have. But, if a patient shows up with a binder that's filled with everything from, like, you know, the progress reports to, you know, any discipline challenges. Does that information help pediatricians or is there ever a point where it's just too much? Nerissa: Well, I would say it's always better to have more information than less. Because the thing is, with any mental health condition, ADHD or otherwise, I tell parents that there is not a singular blood test or an imaging study that helps make the diagnosis, right? For us, context is everything. And the conundrum with ADHD is that children and symptoms can appear different depending on the environment. And so, I don't want to make it a burden for the parents to have to figure out like, "Well, does this doctor want to have this or this?" Like, I would rather them just give me everything and then I can kind of sort through really quickly what I think I need. Because again, context is everything and just being able to see how symptoms have evolved — depending on who's reporting, who's seeing that child — can make such a difference in helping us understand the full picture of how this child is really doing in these different environments. Rachel: So, once a family is working with a specialist, to what extent should parents keep the pediatrician in the loop on things like, if there's a change in medication or even if it starts or stops somewhere along the way, or a new therapist? Or anything else that's kind of in the ADHD zone for the child. Like, it's another kind of "How does this conversation work," but, how does that work? Nerissa: That is such a great question. And it can be confusing, especially depending on how many people are on the team. So, what I will often tell parents is, when I first meet with them as the behavioral pediatrician, sometimes they come to me because the general pediatrician does not feel comfortable either identifying or managing the ADHD. So, when I know that, I will tell parents to think of me as the pediatrician managing ADHD specifically, whereas I will keep the pediatrician in the loop about what's happening, because they need to know it's part of general health, right? Because brain health is just as important as physical health, OK? We don't want to make that distinction. It's the whole child, right? We're treating the whole child. But, knowing who you need to call when certain things arise is so important. And so, that's why it's really important when you're working with a specialist, to really establish that role on the team. OK, so if you're prescribing the medicine, who do I call if I have a concern about a side effect or if I need a refill, right? That conversation needs to happen. And so, typically, the person prescribing the medicine will need to be the person you call, because they're going to be overseeing that. Now, if it's not your general pediatrician, absolutely, they'll want to know what's going on in general. Because if your child gets sick and you need to see your doctor for, you know, flu or regular medical care, they're going to want to know everything your child is taking. So, that's why we want to keep everybody in the loop to some degree. Rachel: So, we've been talking a lot about ADHD. Do pediatricians diagnose or give parents information about other learning differences, like dyslexia, maybe. Or is it primarily things just like ADHD and anxiety?Nerissa: I mean, I think to a degree that pediatricians, they know of all these things. A certain pediatrician's comfort level with identifying it may differ, but they are certainly well aware of, you know, differential diagnosis is what we call it. You know, what are some of the possible explanations for why this child is struggling in school and not making the grades or not having the output? So, sometimes it may be detected a little bit later if their comfort level or their awareness of a certain possibility is not quite up there. But, you know, I think that's why parents need to feel empowered to continue to talk with their pediatrician about their concerns. And if they're not feeling like they're feeling heard, right? it's OK to seek a second opinion. Rachel: So, on that note of perhaps not feeling like they're being heard. I think some families do have some anxiety, you know, about having this kind of conversation with the pediatrician — whether it's about ADHD or anxiety or dyslexia — and maybe they're concerned that the doctor will be dismissive or simply not understand the complexities of what's going on. I've definitely heard mixed things from parents trying to have that conversation or concerned about having that conversation. So, do you have any advice for people who find themselves in that boat on just how to have the best interaction possible and make it a productive conversation? Nerissa: Yeah. So, you know, I think obviously always preparing for that appointment in advance if you can. Just because the general pediatrician typically will have a briefer visit time with you. And it's not that they don't want to listen. It's just they're really busy, right? And so, we want to make sure that, you know, we make the most use of that time. And what I really love about the resources that you guys have on your website is "Take Note." That is a great resource that I refer a lot of families to. So, you know, you want to gather information. You want to talk about it with your child's teacher, "What are you seeing?" Talk to your partner about it. Gather that information, right? And then, you want to also talk with your child. How are they feeling? And then, when you present that information to the pediatrician, with data — you know, you've got the report cards, you've got like examples of school work or whatnot, emails with the teacher — and then you can always use those statements of, "I've been noticing. I have been hearing my child tell me these things. We are up until 11:00 doing homework and this is a stress for our family." So, you know, trying to come with concrete examples, to really bring that story to life helps your pediatrician really understand the gravity of what's happening. Now, sometimes parents will say, you know, "We've talked to our doctor many, many times and, you know, we still feel like we're not heard. We've tried maybe a couple of things or we've been told to wait. Let's wait it out." You know, and I wasn't there, so I can't comment on that, but we really want to help our families know that sometimes you just have to trust your instincts. And if you try to keep going and you're not getting heard, it's OK to seek another opinion. Rachel: Sometimes — I mean, I've had this experience with all different kinds of things, not even necessarily this particular conversation where — you're in the office with the pediatrician and you feel like the conversation is going fine and then you leave and you realize you totally did not get what you needed. And it's not their fault either because you're like, "OK, thank you!" And it is kind of like, "Now what? Now what do I do? Because that really didn't satisfy the need of, you know, what I was trying to figure out."Gretchen: Yeah. I wonder — I have a nuts and bolts question related to this — you know, sometimes I feel like me personally, with my own kids, I used to just have a little Post-it note, right? And I'd be jotting things down and saving it for that one yearly appointment. If you are suspecting that maybe your kid has a challenge like ADHD, does it make better sense to say, "No, I want to make an appointment about just this," versus like, "It's part of my yearly checkup?" Nerissa: Gretchen, yes. Please, please, please. Your pediatrician, even though you see them annually for your well-child visit if there is any concern that comes up — just like a cold or, you know, if your child skins their knee or, you know, falls on the playground — you need to bring them in. This is just the same. And that's why I wanted to bring it back to, you know, brain health versus physical health. Pediatricians treat all of that, the whole child. And I think that's one of the things that parents need to remember is that, you know, if you have this nagging concern about how your child is thinking or learning or behaving, it warrants at least a phone call to the pediatrician office to start that conversation. And I know that the pediatrician would really love it to have dedicated time to focus just on that concern. So, absolutely call your pediatrician office and ask specifically for a separate appointment to discuss this, because we have to have time to peel back all the layers. Rachel: OK. So, as we get towards the end of our conversation, I wonder if we can bring it back to the beginning for a moment. Is there anything that you think your family or pediatrician could have done when you were a kid so that you could have gotten an ADHD diagnosis earlier?Nerissa: Yeah. I mean, I think it's multifold. I mean, I think just being asked, you know, "How is school going?" and not just kind of at the surface level, right? I mean, I would just imagine that my parents would have said, "Oh, she's doing fine. Her grades are A's and B's, you know. She's not failing anything, right?" And so, then it just is "OK, check, check, check," right? So, I think when parents have a specific concern about attention and learning to not just say, you know, "I wonder if this is ADHD." I really want us to think about what are you seeing, what examples can you provide? And let's go from there. Because I think even when I'm interviewing my own patients, I will ask the child themselves first. I'll have that conversation with the child too, not just the parent. But ask them like, you know, "How is school going? What is an example of a class that's going really well for you and why? And then let's talk about the fact that not everybody can be good at everything. And so, what are some of the more challenging subjects or classes that you have and why is that?" You know, and I'll try to probe and push kids to say, well, you know, sometimes they'll say, "I don't like writing." Well, what is it about it? Is it that your hand gets tired? Is it that when you're asked to write something, you get overwhelmed, you don't know where to start? Or when you're starting to write, you don't like the editing part? You know, like, what is it about that? You know, so if we can really dig a little bit deeper and not say at the superficial level, I think that gives us a little bit more insight into how that child is thinking and feeling when they're struggling in school, right? I think giving voice and really inviting them to think a little bit deeper about what it is about that, that they're struggling. First of all, validates that experience for them, but then also helps them be able to give voice to that. Rachel: I love that very specific questioning. It's good. Nerissa: Yeah. Because we know ADHD is a challenge of motivation and interest. And so, that's part of the thing that I like to teach parents in general, it's not a deficit of attention, even though that's part of the name, right? But it's that we have a hard time regulating that attention and focus, that interest, that motivation. It waxes and wanes. And that's part of the problem, like, it's so stressful for kids and families to understand, you know? "You're just being lazy." I hear that a lot.Rachel: So, is there anything else that you'd like to add that we haven't covered already in this conversation? Nerissa: Well, with that invitation, I will just say that I honestly, again, just want to impress that ADHD is not necessarily good or bad. And I try to teach that to families, you know, all the time. I want them to recognize and not be afraid of ADHD. I think so much of what I've seen is that kids come to me when they finally come to see me, they've had a hard time. You know, they've struggled. They've gotten messages that, you know, "Why can't you do this? Why are you always forgetting this?" They're internalizing a lot of that and they're feeling like they're just not good enough. And I'm here to tell you that, regardless of the diagnosis, we need to invite kids and educate them alongside their parents. We have to talk with them, not just to the parent, because they're in the room. They're hearing things, are observing things. And I always wish, you know, that when we're talking with kids that we fully turn our attention to them, show them that we care, and then really help them sort of learn to love who they are, their whole self. You know, I tell kids all the time, "We can't give you a brain transplant. You know, ADHD affects our brains, but the brain is what makes us who we are. And we just have to learn that, how your brain is working so that way we can work with it, right? We can work with it and we can thrive." So, we want to give them that message that having ADHD can be an incredible opportunity and a gift. But it's so important in those early stages of how we talk about it to really set a positive tone. Rachel: That's a great way to end this conversation. Thank you. Nerissa: Thank you so much for having me on. Rachel: You can find links to our pediatricians hub, which includes a conversation starter toolkit in our show notes for this episode. Rachel: You've been listening to "In It" from the Understood Podcast Network. Rachel: This show is for you. So, we want to make sure you're getting what you need. Email us at init@understood.org to share your thoughts. We love hearing from you. Rachel: If you want to learn more about the topics we covered today, check out our show notes. We include more resources as well as links to anything we mentioned in the episode. Rachel: Understood.org is a resource dedicated to helping people who learn and think differently, discover their potential and thrive. Learn more at understood.org/mission. Rachel: "In It" is produced by Julie Subrin. Ilana Millner is our production director. Justin D. Wright mixes the show. Mike Ericco wrote our theme music. Rachel: For the Understood Podcast Network, Laura Key is our editorial director, Scott Cocchiere is our creative director, and Seth Melnick is our executive producer. Thanks for listening. Rachel: And thanks for always being "in it" with us.
In ItWhen gifted kids need accommodations, too
Meeting the needs of kids with learning and thinking differences can be a lot. Add giftedness into the equation, and parenting takes on a whole additional dimension.Meeting needs kids learning thinking differences lot. Add giftedness equation, parenting takes whole additional dimension.That’s Lexi Walters Wright hears co-host Amanda Morin episode raising twice-exceptional (or “2E”) kids. Amanda swaps shared experiences guests Penny Williams, parenting trainer coach, Debbie Reber, author creator TiLT Parenting — raising 2E sons.They talk finding right school program students gifted struggling. also rethink intelligence really means hope future looks like 2E young adults.Related resourcesGifted children’s challenges learning thinking differences12 questions ask school 2E studentsA unique IEP solution twice-exceptional sonDebbie Reber’s TiLT Parenting PodcastPenny Williams’ Parenting ADHD PodcastEpisode transcriptAmanda Morin: Hi. I'm Amanda Morin, parent kids learning differences — writer Understood.org.Lexi Walters Wright: I'm Lexi Walters Wright, community manager Understood.org.Amanda: "In It." Lexi: "In It" podcast Understood Parents. show, offer support practical advice families whose kids struggling reading, math, focus learning thinking differences. Amanda: today we're talking supporting kids learning differences gifted. Penny Williams: That's something we've heard teachers long time. know, he's told, "I don't understand can't this. You're smart."Lexi: Penny Williams writer best known book, Boy Without Instructions. Amanda: boy she's referring son, Luke, teenager.Penny: Luke 16. No, he's driving yet. ready yet. Amanda: Luke intellectually gifted. also learning thinking differences. parents figure deal gifts home, school world. Lexi: Amanda, we're going get Luke Penny's story minute. first want ask you: There's term people often use kids gifted disability. It's "twice exceptional," "2E" short. I'm guessing listeners hearing term first time thinking. "Well, what's big deal? Isn't like, kid learning disability that's tricky — hey, bonus, it's bad gifted?"Amanda: Wouldn't nice easy, right? twice exceptional 2E, think key exceptionality. We're talking exceptionalities rare ways. kid learning disability, means they're struggling type processing learning difference kind thing. kid who's, like, sort off-the-charts really smart way separates rest kids class also. concern twice exceptionality makes really tough oftentimes one "E" mask other. kid who's really strong one area — gifted — learning disability learning difference gets way makes look average. sometimes you'll see giftedness really good job masking disability.Lexi: topic know lot about, Amanda. So, parent advocate also parent. Amanda: Oh yeah, definitely. two twice-exceptional kids home. don't know math is. Exponentially? It's challenge. Lexi: give us example know 2E kids? Amanda: house? give example house. looks different everybody's house. So, example, yesterday — live Maine. snow day 9-year-old, one twice-exceptional children, said him, "Hey, it's snow day!" says me, "Great, I'll sitting reading interview CEO Mitsubishi 'Motor Trends Magazine.'" Whereas expected be, like, "Cool, I'm going put pajamas hang playing LEGOs." Lexi: son also learning thinking differences. Amanda: Yeah, also ADHD autism, he's sort wrapped that. teenager also twice exceptional, thinks amazing ways. deep conversations. yet can't seem grasp idea left hat room last place saw hat, hat literally room somewhere — didn't walk off. sounds like lot teenagers, literally it's idea still hard keep mind. Caller 1: three 2E kids one stories aware kid struggling son 3 years old. reading, pretty much, words since 2. noticed also really hard time keeping together nursery school. said "he's either gifted bored ADHD" actually turned both. true. Caller 2: third grade started getting calls son saying, "I think I've tried hard enough today, Mom. It's time come home." People always focusing deficits challenges misinterpreting actions. Reading class actually way calm nervous system pay attention. brain's way doodling. Caller 3: hardest thing get people understand 2E kid lazy unmotivated. actually story: ninth grade, finally able get advanced class, math class. teacher upset able get class went principal told son unorganized immature class. principal pulled son's file showed teacher son's math scores. that, told son highest math scores entire K 12 school. deserve class also let know teach son. Lexi: today's episode, we're going draw experience, Amanda, we're also going hear two moms whose paths taken many twists turns try make sense learning strengths challenges children have.Amanda: First we're going go back Penny, mom Luke. Lexi: Luke little, Penny husband didn't know "gifted," "learning disabled," "2E," labels. knew sweet, smart, curious kid. Amanda: started school. Penny: Kindergarten disaster. one worst years we've had. October birthday kid. still 4, could see super, super intelligent. So, know, knowing anything, went ahead started. end second day, parent-teacher conference. morning second day already called me: "You need stay pick up, talk." Like, oh, great. thought, well, he's prepared. know, didn't go preschool. stayed grandma working thought, know, really need give time. Lexi: calls notices kept coming. "He's sitting still, he's wiggling much carpet time. He's flailing scissors, endangering kids." Penny: know onus put us, hadn't prepared work fit classroom. know, one ever said "hey might something else going on." know, "This could learning disability. could developmental disability. know, might want go pediatrician." Lexi: Penny husband figured school problem. next year, switched. new school seemed like much better fit. Penny: amazing teacher first grade differentiated instruction. kind sweet understanding flexible kids' needs. sort notes coming home: Luke can't stay task, Luke behind reading, Luke doesn't control body. know, notes kinder, still issues. that's ultimately led us pediatrician, developmental pediatrician ADHD diagnosis. Lexi: team evaluation recommended Luke try medication ADHD. Penny hated idea. could see needed something Luke. Penny: really, really suffering. sad time. crying time. mean really severely affected fact couldn't meet expectations people didn't understand him. Lexi: So, Amanda. relate story?Amanda: relate story really hits home me. time child feels like they're meeting expectations really hard. can't meet people don't believe true, it's much worse. don't know you, Lexi, I've never met kid wants stand crowd negative way, happen giftedness learning differences. know Penny I, quirky, amazing kids think differently many ways, it's hard makes stand apart want fit in. Lexi: Well, Luke began taking medication ADHD, help some. Penny could see things going Luke, years later
Emotional sunburn: What rejection sensitive dysphoria feels like to me
“He doesn’t seem that bothered when other kids tease him.” I was literally speechless when the school social worker said this of my 8-year-old son, who has ADHD and autism. Everything bothers him. And on top of that, he has a “tell.”When my son is upset or hurt about something that he thinks others will say is “no big deal,” he purses his lips together so they don’t tremble and blinks his eyes very, very quickly.I guess if you don’t know him well, it’s subtle enough that you might not see it. At first, even people who do know him well — like my husband — didn’t see it.But I’ve never missed it. I never missed my son’s tell because I have a similar one. And, more importantly, I know the feeling that’s behind it.It’s knowing you may be overreacting to something small, but also feeling it with such emotional intensity that it hurts. I’ve heard people call it an “emotional sunburn.” The idea is that when you have a sunburn, even a light pat on the shoulder is jarringly painful.An emotional sunburn completely disrupts your ability to self-regulate. It short-circuits your ability to produce a typical emotional response. That’s why my son’s tell is subtle. He’s frozen.In technical terms, some researchers refer to this as rejection sensitive dysphoria (RSD). It’s very common in people with ADHD and sensory processing issues — both of which my son has. I have sensory processing issues, too.People who experience RSD get very upset when there’s conflict or when they think they’ve been rejected. Just like sensory processing issues and ADHD can cause sensory overload, they can cause emotional overload, too.It’s why I panic when someone says to me, “Can I talk to you later?” or schedules a meeting without telling me what it’s about. I always worry they have something bad to tell me or are unhappy with me.When I write something online, I obsess or worry over what someone on the Internet might think of me, even though intellectually I know they don’t know me or the specific circumstances of my life. (So, please be kind in the comments to this post — I’m running low on emotional sunblock.)I don’t like it when people say to me, “Your kids are so lucky to have you as a mom. You know just how to help them.” It’s right up there with “What doesn’t kill you makes you stronger” in my list of top 10 phrases that may be true, but that don’t make me feel any better.As a parent with learning and thinking differences, I see things in my kids that I know I’ve passed down to them and wish fervently that I hadn’t. RSD is one those things. It’s hard for me to watch my son feel things as intensely as I do.That’s what’s so frustrating about that phrase. I feel guilty. I feel responsible. I guess that’s the whole point — I feel. I feel it all, and there’s no quick remedy for an emotional sunburn.Still, it’s true. I do know how to help him.Knowing how little things can sting has often helped me figure out why my son reacts to things that nobody else thinks is a big deal. Things other people don’t even notice.I’m often able to see what’s at the core of why my son is upset, even when my husband doesn’t.I’m never going to be able to stop the emotional sun from beating down on my son. But I can teach him to find and create shady spaces inside himself where he doesn’t let the sun burn him. I can apply my best dose of empathy to help relieve the sting.And I can show the school social worker what his tell looks like and watch her face change as she recognizes it and says, “Oh, I’ve seen him do that! I had no idea that’s what it meant.”Read what a mom wishes others knew about parenting a child with ADHD. Download a one-page sensory processing issues fact sheet. And learn about different types of emotional help for your child.
In ItUnpacking the teen mental health crisis: How we got here and what to do about it
The teen mental health crisis. How is it showing up in kids with learning and thinking differences? And what can we do about it? We’ve been hearing a lot about a mental health crisis that’s affecting kids — especially teens — really hard. What’s behind this crisis? How is it playing out for kids with learning and thinking differences? And what can we do about it?To help answer these questions, hosts Rachel Bozek and Gretchen Vierstra turn to Dr. Matthew Cruger. He’s the clinical director and a senior neuropsychologist at the Child Mind Institute. Learn how the crisis is showing up in his practice, especially with kids who learn and think differently. Hear Matt’s thoughts on when the crisis started — and why. Plus, get Matt’s advice on how families can help support their kids’ mental health. Related resources Treatment for mental health issues How to talk with your child about social and emotional issuesListen to this episode of The Opportunity Gap for more tips on supporting kids’ mental health Episode transcriptGretchen: From the Understood Podcast Network, this is "In It," a podcast about the ins and outs...Rachel: ...the ups and downs...Gretchen: ...of supporting kids who learn and think differently. I'm Gretchen Vierstra, a former classroom teacher and an editor here at Understood.Rachel: And I'm Rachel Bozek, a writer and editor raising two kids with ADHD. Today, we're talking about our children's mental health.Gretchen: We've been hearing a lot in recent months about a mental health crisis that's hitting kids, especially teens, really hard. It was there before the pandemic, but we know the isolation and anxiety brought on by COVID-19 didn't help.Rachel: And honestly, even if we weren't hearing about this crisis in the news, I think it would still be on our radar. Because speaking for myself, at least, I see evidence of it all around me.Gretchen: I do, too. I mean, I see it in my own home. And I've been hearing from lots of parents in the community that kids just seem to be saying a lot of "What's the point? Why should I do it?" And they're just lacking some of that motivation that I think kids used to have.Rachel: Yeah. Yeah. So I guess the question I have is: What's behind this crisis? How is it playing out in particular for kids with learning and thinking differences? And what can we do about it?Gretchen: So to answer those questions, we're speaking today with Dr. Matthew Cruger.Rachel: Dr. Cruger is the clinical director and a senior neuropsychologist in the Learning and Development Center at the Child Mind Institute.Gretchen: In that role, he does clinical work, neuropsych exams, cognitive assessments, and other evaluations for gifted children, as well as kids with learning difficulties, autism spectrum disorders, and ADHD.Rachel: We are delighted to have him here with us on the podcast. Matt, welcome to "In It."Dr. Cruger: Thank you.Rachel: We've been hearing for some time now about a mental health crisis for teens and even pre-teens. And we want to get into how this is showing up for our kids who have learning and thinking differences in particular. But first, we thought it might be useful to look at the problem more broadly. Even before the pandemic, we were seeing a marked increase in depression, anxiety, and suicide among teens. Is that right?Dr. Cruger: Yeah, I think that prior to the pandemic, we certainly recognized there's a couple of things that I think are factors. One is that we don't have enough clinicians to provide treatment for all the patients that need treatment. So families adjust to many of the struggles that their kids have, hoping that they'll get better, when some clinical intervention could be helpful in turning things around.Gretchen: What about what we've heard about the impact of technology and social media? Has that had a negative impact on kids?Dr. Cruger: I think so. Certainly, I think kids are spending a lot more time on technological devices. The impact of that is that they're not necessarily out interacting with other kids. Certainly, we want parents to monitor the kind of content that they're accessing as well, because there can be communications in that context that are problematic for kids and present a way of living in the world that's not as helpful. So the amount of engagement and the access to certain types of content on the on the internet I think is problematic and exacerbates things.Rachel: Yeah, I definitely saw this with both of my kids that when the pandemic hit, the device usage just like went through the roof for so many reasons that we all know and understand. But can you talk a little bit about how that contributed to this crisis?Dr. Cruger: Yes, I think that it was obvious because most of us were home and everything switched to remote platforms. Kids had to be on the computers every day for much of their schooling. And obviously many families couldn't also stop the work that they were doing. And so I think by necessity, some of the technology became — it served as a babysitter, right? For some of the time when kids had downtime. And it is less of an interactive experience, I think, even under the best circumstances.So I think with those increased time screen usage going up, we have pretty good evidence that that can have negative effects on their mental health experience. And I think it's persisted. So even with the return to school, the situation has sort of led kids to have a decrease in their experience, right?Gretchen: I think about engagement with the kids during this time period, right? Whether that was school or family. But like, really school, like I saw at home, at least for me, like engagement go down.Dr. Cruger: Yes, I do feel like — and I'm reflecting on my own kids in particular, who were in third grade and kindergarten at the time. So there are special, unique challenges at those developmental time frames. Right? Kindergartners need to learn to read. That is such a great process to do in person with a teacher who is helping you sound out words, who has books and content right there for you.And third grade when you're really starting to like apply yourself for deeper thinking. That's something where a mentor, a sort of coach, someone who's there as your champion to support you like a teacher could and give you direct feedback. That kind of engagement is really essential to the learning process that we are all used to. So there's no doubt that that was much harder to do. So I think that that clearly had an effect.Gretchen: Yeah, I mean, in my house I had a fifth grader going into sixth grade. So in middle school. That's such a social time for kids. And to be isolated from your peers during all of that, it was really hard.Dr. Cruger: Yeah. I think that during that time frame, the group of kids I was most worried about were kids that were in middle school heading to high school or in the early phases of high school. It's a time of really serious reflection on the material that you're working with in school. And really it's where a lot of those social advancements happen. Really learning where you stand in relationship to others and more complex social encounters and interactions were so important to develop in that time frame. And a lot of those kids I do think suffered. They were sad.Gretchen: So what does all of this look like and sound like in your practice? What have you been hearing from the kids who come into your office these days?Dr. Cruger: Yeah, I think maybe the first piece of things is like a low-level sort of sadness or anxiety about some experience that's sort of persisted. I do feel like kids benefit from the sense that they are going through some of these experiences for a purpose. And I think it's been very hard for us to know how to explain to them why things are organized the way they are. What's the higher purpose, what are they striving to achieve?So that reflects a little bit of the engagement piece, like to be fully engaged in the content of material. But also to feel like school happens in a certain way and we're headed for a certain destination. That seems to me to have been lost.Gretchen: Yeah, like I would say, like in my house, I've heard a lot of "What's the point?"Dr. Cruger: I think that's true. I think there's an apathetic sort of response. It's sort of like it doesn't really matter so much what I do. And I've heard it for a long time, you know, where in focusing on academic work with kids, you know, kids might have for a long time have said to me, like learning math doesn't really matter because I won't use it in my future.But it's maybe like a broader response to the time, like, I guess a feeling of like, I don't really know what the point is or what the goal is of what I'm being asked to do. That's a little bit of a helplessness towards the task and activity.Gretchen: Rachel, I want to step back for a second here and just pick up on something that Matt just said. He's talking about how kids responded to the time. What's that time? All the time Is the pandemic, right? When things really shifted. And I think it's worth unpacking a little bit about what that time was and what it did.Rachel: Yeah, right. Definitely. It's easy to forget from a little distance how just upside down our world was when the pandemic first hit. All of a sudden, a lot of kids discovered that their parents, their teachers, and maybe other people that they always would look to for answers really didn't have much to offer or know what to do.Gretchen: Yeah, I mean, it must have been — I know it was hard for kids to see rules changing all the time, adults complying, not complying. To see, you know, your parents who used to like get up and go out the door to work are now sitting at home in their pajamas on the screen all day. And what's happening there?Rachel: And and the rules about screen time kind of went out the window and, you know, some other rules, too, just because we were all just trying to get through the day. That's a lot.Gretchen: Yup. So it seems like all of a sudden kids are like: All these structures that you have in place are arbitrary and made up. And I'm not going to go along with this anymore.Rachel: Yeah, we got called out. So let's get back to our conversation with Matt.Rachel: We know that you work with a lot of children who have learning and thinking differences. Can you talk about how all of the stressors that we're talking about here may be affecting them in different ways?Dr. Cruger: Yeah. I mean, I think that if you — I guess I reflect on the learning differences that I see. The kids who are struggling with academics, in particular, the inputting of new ideas, new processes for solving problem. They need real guidance on how to manage that material. And that can sometimes come from family involvement, but often comes from direct instruction. They really need teachers who are able to guide them in that process of learning.Kids are struggling to find a source of motivation that they can direct their efforts to. And sometimes they feel like it's hard to know: Will their efforts pay off? And that can sometimes lead to sort of decreased motivation.Rachel: You know, we've been talking a lot about the impact of the pandemic on mental health. But I know there are a lot of other sources of anxiety and depression for kids these days. Things like school shootings and climate change. Do you hear about those kinds of things from the kids that you see?Dr. Cruger: Well, I think you bring up, Rachel, like a set of things that are on my mind. There's a bunch of global issues that kids confront. So it's very common for me to hear kids talk about sort of what we think of as like climate anxiety. You know, that worry that the world is on a crash course towards not being able to exist in the way that we know it. And that is a like a low-level worry and source of preoccupation for kids, even though they're highly motivated many times to do something about that.I think violence and safety is another thing that kids spend their time thinking about. And I certainly also think a lot of teenagers are focused on their own identity development. That's a developmental goal for that age range. And there's so much information about choosing your identity. What are acceptable identities? What are identities that others will not accept? That makes that process, I think, even more complicated for them. So those preoccupations, I think, sort of derail them from knowing how to invest time in the things that they need to do.Gretchen: Right they're figuring out all those questions around sexuality and gender identity. Not to mention, for older kids, they're thinking about what they want to do with their life. Is that something kids come to you for guidance on?Dr. Cruger: Yeah, I mean, I think that a lot of teenagers think there might be only like four or five jobs that a person can have in life, or that college is the only choice.Rachel: Yeah, totally. Although they all seem to have gotten the memo that professional video game player is a thing.Dr. Cruger: There is no doubt.Gretchen: Or YouTuber.Dr. Cruger: Yes. YouTuber Influencer Professional Video Player. Yeah. Yes. I think I did say to my son at one point, not that many people get paid to play video games.Gretchen: Right.Dr. Cruger: He did not believe me. So.Gretchen: You know, not to bring us back to doom and gloom, but for one more moment, I do want to ask about something else has been in the news. Is this whole idea of loneliness — that we have a loneliness problem in the U.S. Are you seeing that come up in your work with kids?Dr. Cruger: I do think that it's worth sort of questioning what are the ways that kids have contact with others outside of school? When do they get to play with each other? I sound like, you know, I have a lot of gray hairs in my beard, which I do. But like, I remember being outside on the street playing football. And we just don't see kids out and engage with each other in unstructured play activities quite as much.And, you know, I do also think like going to your friend's house to play video games when I was younger was sort of boring. You could only play Atari 2600 for so long. But now they're much more engaging and activating processes that the kids immerse themselves in. And so I think it leads to some challenges in how to have contact.Rachel: So how can we best help our young people, you know, as parents, as caregivers, as teachers, whoever's listening. What makes a difference for them? You know, in all of these things, loneliness and the other things we've been talking about.Dr. Cruger: Yeah. I mean, I think most parents decided that they were going to have kids sort of set their kids up for the best future and the best life. So I think just reminding ourselves again of the importance of the parental involvement with kids, I think is the first piece of things. Right?It's been hard to, I think, over this past period of time, to keep our values front and center in our mind because we've had to adjust to what's required in the moment. And so to return again to the idea of, like, what are the most important things for me and my family? I do think there's value in families sort of trying to think of is there a motto that they could have for their family that sort of captures that moment, like "We Crugers stick together" or something like that? It sort of captures the family spirit, but also like a positive element of we're all in this together and we have values that we're trying to achieve.I do think spending more time together is a clearly like an antidote. As annoying as it was for my kids to learn to play pinochle, that was the thing that we focused on learning. Because it gave us time to get away from the screens, to sit down together, to challenge each other. And I think those kind of activities where you're really engaged with each other and having a good time are very important.There's no doubt family meals are also something that we should invest in. It's not always possible and it's not always easy when you're catching things on the fly. But that time where you're sitting down together as a family I think is really worthwhile.I won't say family meetings because everybody calls family meetings and the only people that show up are the parents. But I mean, but that idea that there's time to work together to align your interests. And then I think helping support your kids to find, you know, the one or two or three good friends, and making traditions and routines that they can sort of establish with their peers that are reliable. Like if they, you know, the friends all come over on Friday for pizza or something like that, that might be something that's like low investment but really worthwhile.Rachel: Yeah. I feel like our family meetings always, there's an expectation that there's some, like, amazing surprise. It's like, hey, we're going to have a meeting and it's like, oh, we're going to Disneyworld. Like, No, we actually need to talk about something that's going on in school.Dr. Cruger: That's right.Rachel: They backfired.Dr. Cruger: Taking out the garbage. Yeah.Gretchen: Right. The chore list.Dr. Cruger: Yeah, exactly.Gretchen: So if you think your own child may be anxious or depressed, but they aren't talking with you about it, what can you do as a parent? How do you figure out if they're at risk in some way or if they're just going through a fairly typical high and low of life as a teenager, for example?Dr. Cruger: Yeah, I mean, I think parents need to trust their instincts. I do think that when we have concerns about our children, it's not often just because we're worrying needlessly. It means that we're noticing something that our intuition is sort of telling us we better check in with them about.I think that a safe space for talking for kids is one that sort of models what we know good friendships are about. Right? It's sort of a model of a place where you can share information without someone making designs on how you should improve. Right?Some of the things that might make it easier if you're, you know, the teenagers turning away from you, if there's two parents involved, maybe it's time for the other parent to try to take over. And getting away from the house, going out to eat for breakfast, carefully bringing up a topic that you have concerns about. I think all of those things. You know, a nice soft start works well for all of us. Don't start with a heavy hand when we're raising a concern with someone that we love. And I do think that kids who are going through some struggles do desire solace for those struggles. So if they know that you're available for that, that's helpful.Anxiety is maybe a tricky one because anxious people try to get out of the situations that provoke anxiety. So even talking about the thing that makes you anxious, you really sort of are mobilized to seek to avoid it. The problem is, is that if you avoid it, it just sort of gets worse. And so I think that's one thing that parents should sort of keep in mind, that when your child is feeling anxious, it might make them sort of naturally more reticent to share with you the details of that.And, you know, some mind reading is very problematic. Like, if you say, I know you're thinking something negatively about it, the person you say that to is bound to get irritated with you. But if you say, I've been noticing that you look sort of sad and I want to help with that, you know, can you tell me more about what's going on for you? That kind of mind reading might convey interest and sincere desire to understand. That kind of mind reading is affectionate and maybe positive and might yield a good result.Gretchen: You know, getting back to making a safe space to talk to kids about what's going on. I've really been trying to do that. And I know I've mentioned before that I do a lot of this in the car, which doesn't work for everybody. But the other thing I've been trying hard to do, which is very difficult for me, is not be the advice giver, is to kind of just sit and listen and let them vent. And then when I don't give advice, every once in a while, my daughter will give me this look like, Well, where's your advice? I'm looking for it now. And then I give it.Rachel: Right. But you have to wait for that cue for sure.Gretchen: Yeah.Rachel: Yeah, I think that's great. And I try to do that, too. I definitely have some work to do there because I often jump in with like, well, it sounds like.... And I just offer my read on what happened, which isn't necessarily why the conversations happening.Gretchen: Yeah.Rachel: I do like that approach. and I think they do get to that point where they still want to know what we think.Dr. Cruger: Yeah.Rachel: So what do you wish people better understood about this crisis and how we get out of it?Dr. Cruger: I think my biggest wish would be really thinking about how they can, you know, parents can develop or teachers can develop like a deeper, more personalized understanding of the people that they're interacting with. So time is always tight, but a way to really show sincere interest and engagement, I think is important. Otherwise, it's sort of like almost like commuting culture. We're just sort of passing each other by, sort of missing those moments and opportunities to make deeper contact. So that's why I think what I would wish for it, you know, time and opportunity to take a moment to find out what's going on, I think that would be a real boon for people.Gretchen: That sounds like a good plan.Rachel: Thank you so much for this. It was such a great conversation.Gretchen: Yeah. Thank you so much.Dr. Cruger: Well, thank you. I appreciate being able to talk to you both. I enjoyed the conversation and I appreciate what you're doing.Gretchen: You've been listening to "In It" from the Understood Podcast Network.Rachel: This show is for you. So we want to make sure you're getting what you need. Email us at init@understood.org to share your thoughts. We love hearing from you.Gretchen: If you want to learn more about the topics we covered today, check out the show notes for this episode. We include more resources as well as links to anything we mentioned in the episode.Rachel: Understood.org is a resource dedicated to helping people who learn and think differently discover their potential and thrive. Learn more at Understood.org/mission.Gretchen: "In It" is produced by Julie Subrin. Briana Berry is our production director. Justin D. Wright mixes the show. Mike Errico wrote our theme music.Rachel: For the Understood Podcast Network, Laura Key is our editorial director, Scott Cocchiere is our creative director, and Seth Melnick is our executive producer. Thanks for listening.Gretchen: And thanks for always being in it with us.
Why the school with the highest test scores wasn’t the right fit for my child with ADHD
I’m the mother of a twice-exceptional son who just started sixth grade. Tay is gifted. He also has ADHD, anxiety, high-functioning autism, and epilepsy. Despite these challenges, he finished elementary school above grade level in math, and almost above grade level in English language arts.I was so proud as I sat through Tay’s fifth-grade graduation ceremony. But I wasn’t prepared for what would come afterward. Graduation was filled with cheers, tears, and, much to my surprise, a message to me from his teacher: “Tay holds a special place in my heart...I know he walked toward a bright, exciting future.”There were high-fives and chest bumps celebrating the end of homework and dioramas for the summer all around me. But I just strolled the schoolyard in a haze, taking in what Tay’s teacher had said.Other mothers approached me and volunteered to take Tay on summer outings with their kids. I watched Tay collect phone numbers from fellow classmates to keep in touch. I stared in amazement while he seamlessly allowed school staff to hug him (despite his intense aversion to physical touch).That whole morning felt surreal, because life wasn’t always that harmonious for Tay.Before he entered elementary school, I did extensive research to find the areas in our district with the highest test scores. I began my search with GreatSchools, which provides key information on schools to help parents assess the best fit for their children.I also referred to the Academic Performance Index scores (this is the formal measurement of academic performance and progress of individual schools in California). We sold our home and found a rental within our budget near a high-performing school — the motherlode.But within weeks at this academic oasis, Tay was having daily meltdowns and seemed to be declining academically. I decided to hire a tutor and do classroom observations. Though Tay had a 504 plan, it appeared that it wasn’t being followed. The teacher wasn’t seating him in the front of the class, breaking down tasks into small chunks, and giving him regular breaks.My frustrations with this situation led to more research, and that research led me to what I hoped was the answer: an IEP.While learning about what an IEP could do for Tay, I enrolled him in social skills classes, placed him in therapy, and signed up for support groups and parenting workshops. At the same time, I applied for charter schools and then to magnet schools in our district.Instead of relying on test scores, I toured campuses, spoke to parents, and sat with school staff. I even spoke to students. I relied on my gut. But before I moved my gifted child, I asked that he be evaluated by the school so that he could qualify for an IEP. I was denied. And that crushed me.My husband and I decided to enlist help. We found our own superhero in the form of a special education attorney. Just weeks after we sent off a request from her, Tay was granted an IEP and got accepted into a magnet school that played to his strengths.Tay spent five years of his elementary school career receiving the services he needed to get on track and stay there. He surpassed everyone’s expectations both academically and socially. And while there are still challenging times, most days actually leave us in total agreement with his fifth-grade teacher: He’s heading toward an “exciting future.”If you’re thinking about switching schools, learn what the options are for different types of schools. And find out what happens to your child’s IEP if you switch schools.
Understood Explains Season 3IEPs: Does my child need an IEP?
Get tips from a special education teacher on how to tell if your child needs an Individualized Education Program (IEP) — or if you may want to wait.If your child has been struggling in school, you might be wondering if they need special education. And once you start exploring special education, you’re going to run into the term IEP, which stands for Individualized Education Program.But what exactly is an IEP, anyway? On this episode of Understood Explains, host Juliana Urtubey will cover IEP basics and how to figure out if your child needs this kind of support. Timestamps[00:57] What is the purpose of an IEP?[03:27] What’s in an IEP?[05:42] Does my child need an IEP?[07:42] Should I wait to get my child an IEP?[10:05] What if my child is learning English? [11:36] Key takeawaysRelated resourcesUnderstanding IEPsAre my child’s struggles serious enough for an evaluation?How to help if English language learners are struggling in schoolSeason 1 of Understood Explains: Evaluations for Special EducationEpisode transcriptJuliana: So, your child is having some struggles in school and you're wondering if they might need an IEP. But what does this mean? On this episode of "Understood Explains," we'll cover IEP basics and how to figure out if your child needs this kind of support. From the Understood Podcast Network, this is "Understood Explains IEPs." My name is Juliana Urtubey and I'm the 2021 National Teacher of the Year. I'm also an expert in special education for multilingual learners, and I'm so excited to be your host for this season of "Understood Explains."Quick note about how we're going to structure the season: Most of the episodes focus on information that's important for all parents or guardians to know. But we also have a few episodes that are tailored for different groups of families: families with younger kids, older kids, and multilingual learners. And all the episodes are available in English y en español. OK, let's get started. [00:57] What is the purpose of an IEP?So, what's the purpose of an IEP? Before we answer that question, I want to quickly explain what an IEP is. IEP stands for Individualized Education Program. It's a formal plan that details the special education instruction, supports, and services that are designed to help a student with a disability make progress in school. IEPs are covered by a federal law called the Individuals with Disabilities Education Act, or IDEA. This law applies to all public schools in the U.S., including charter schools. If your child qualifies for an IEP, you'll work with the school to develop annual goals and monitor your child's progress throughout the year. So the purpose of an IEP is basically to be a road map, showing how the school will help your child catch up with their peers. It might surprise you to know that IEPs are very common. Nearly 1 in 6 public school students has an IEP. That means millions and millions of kids have Individualized Education Programs. And each IEP is customized to a student's needs. So if your child has dyslexia, the IEP might specify an hour of special reading instruction a few times a week. Or let's say your child has ADHD and autism. Maybe you and the school think your child needs to be in a smaller classroom to get more individualized instruction throughout the day. These are the kinds of details that get spelled out in an IEP. And it's important to know that most kids who have IEPs spend most of their day in general education classrooms. By law, IEPs need to keep kids with their peers as much as possible. There's one other really important thing that all parents need to know. Having an IEP is not a sign of low intelligence. I've taught many, many kids, and all of my students have unique strengths and needs. But sometimes, people's strengths can be overlooked if they have a learning difference. For example, during my first year of teaching, I had a student named Abelardo, who really struggled with reading and writing. The most I had ever seen him write was "Yes," "No," and his name. But one day, we discovered that Abelardo was selling candy and fun school supplies out of his backpack. And he was so good at it. He even had charts to keep track of his inventory and charts to show what was the most popular. And his charts were even color-coded. It was clear to me that Abelardo had incredible math, reasoning, and entrepreneurial skills. But he needed formal supports to help him with reading and writing. So remember, kids can do really well in some areas and still need an IEP to help them thrive in school. [03:27] What's in an IEP?Let's get into a bit more detail and talk about what's in an IEP. There are lots of important parts, but I want to give you an overview of four key things in an IEP. First, there will be a section detailing your child's present level of educational performance. This is the jargony term for how your child is doing in school. You might hear the school use acronyms for this, like "PLOP," or "PLP," or "PLAAFP," which is short for "Present Level of Academic Achievement and Functional Performance." This part of the IEP outlines the student's strengths, challenges, and how their classroom scores compare to their peers. This section may also mention some of your child's behaviors or interests, like the subjects they enjoy and how they get along with other kids. Next, there will be an "Annual Goals" section. This describes what progress the IEP team is hoping to accomplish. It will list each goal and break down shorter-term objectives to reach along the way. And later this season, we'll have a whole episode on how you can help the school come up with these goals. The third main part of an IEP is the "Services" section. This part details how the IEP will help your child meet the annual goals. This section lists any services your child will get and for how long, such as 30 minutes of speech therapy twice a week. There are also a gazillion different kinds of services that can go into an IEP. Anything from mental health counseling to physical therapy to training in things like social skills or time management. Remember that “I” in IEP is short for "Individualized," which means the IEP can include whatever special services your child needs to make progress in school. And last but not least, is the section that details the accommodations, which are changes in how your child does things at school. This section of the IEP is often called "Supplementary Aids and Services." It could include things like more time on tests and a seat at the front of the classroom to help your child pay attention. It could also include assistive technology like text-to-speech software or audiobooks. The other important thing to note is that an IEP is a legal document. And later this season, we'll have an episode about your rights during the special education process. [05:42] Does my child need an IEP?All right, here we go. One of the biggest questions: Does my child need an IEP? Sometimes the answer to this question is very clear: "My child is blind and needs to be taught how to read Braille." But sometimes the question is harder to answer. Here's an example: "My child has ADHD and needs a lot of support to get organized and follow directions. Will classroom accommodations be enough to help my child make progress in school? Or does my child need specialized instruction?" Schools look at a bunch of different kinds of data to figure out which kids qualify for an IEP. And to help you understand this process, I recommend you listen to the first season of "Understood Explains," which is all about evaluations for special education. We'll include a link in the show notes. But the school cannot evaluate your child for special education unless you give permission first. So you play a very important role here. If your child is struggling in school and you're wondering if these struggles are serious enough to need an IEP, I want you to ask yourself a few questions:Why an IEP now? What got you thinking about this? Was it something a teacher said or that your child brought up? Are your concerns new or have you been worried for a while? Thinking about what prompted your concerns can help you talk about them with your child's school or health care provider. How are your child's struggles getting in the way at school? Is your child having trouble with a certain subject like reading or math? Is your child struggling socially or with things like concentrating in class? Try to write down a few examples, even if you don't know the root cause. What are you observing at home? Does homework take hours and hours and often end in tears? How often is your child worried about school? How intense are these worries? Is your child wanting to stay home from school because it's too hard? These are the kinds of questions that can help you get ready to talk to the school about giving your child more support. [07:42] Should I wait to get my child an IEP?Should I wait to get my child an IEP? OK, so you've noticed your child is struggling and you think school supports might help. There's a very common question that parents ask themselves next: Is now the right time, or should I wait? I've worked with a lot of parents who wanted to wait because they were hoping their child would grow out of their challenges. But I found that the sooner we meet children's needs, the better. Being proactive can help kids in many different ways: academically, socially, emotionally. So if you're wondering if your child needs an IEP now or if you can wait, I want you to do three key things:First, ask the school what kind of interventions they've tried with your child and for how long. Interventions are much more formal than simply giving a student some extra help. They typically take place over several weeks, and during that time the school keeps track of your child's progress. If you think your child's skills are improving with the intervention, you may decide to wait to ask for a special education evaluation. But you don't have to wait. You can ask for an evaluation at any time. The second thing I want you to do is find an ally at your child's school, whether it's a teacher or an aide or another staff member. Sometimes schools have family liaisons. You can ask the front office to guide you to one. Having a relationship with someone you trust at the school will help you understand the process, ask questions, and get help for your child. And the last thing I want you to think about is time of year. Remember, you have the right to request an evaluation at any time, but practically speaking, it's better to avoid asking during the first few weeks of the school year unless you had concerns from the previous year. And likewise, it's better to avoid asking for an IEP at the very end of the school year, when school's winding down for the summer. So, those are a few concrete things you can do to help you think about whether now is the right time to talk about an IEP, or if you want to wait. As a general note, I know many families may be reluctant to speak up or be seen as the squeaky wheel at school. And in particular, I know some Latino families may not feel like it's their place to tell the school how to educate their child. But I want to be really clear here. Schools in the U.S. want families to tell teachers when they're worried about their child's progress. And teachers want to partner with families. So I encourage you to talk with your child's teacher and share your concerns — whether you're asking for an IEP or not. [10:05] What if my child is learning English? So, this next question is near and dear to my heart: What if my child is learning English? Before we dig into this, I want to note that schools use different terms to describe students who speak languages at home, in addition to, or other than English. Many educators use the term "English language learners." I prefer the term "multilingual," and better yet, "linguistically gifted."The important thing to keep in mind is that all children learn languages at different rates, and that's OK. It can be hard to become fluent in English while also learning to read, write, and do math in that new language. But there are ways to tell if a child's struggles are due to a language barrier or something else, like a learning difference, such as dyslexia. We're going to talk more about this later this season, but for now, I'm going to put a link in the show notes to an Understood article to read if your multilingual learner is struggling in school. It includes lots of good questions to help think about whether your child might need an IEP. And there's one more thing I want to mention while we're on this topic. Learning more than one language cannot cause a learning difference or disability. All children, even children with learning and thinking differences, can be multilingual. Families often ask me if they should stop speaking to their child in their native language because they worry it's causing harm. That's just not true. In fact, educational experts recommend that families keep using their home languages. Speaking multiple languages is good for a child's learning and brain development. [11:36] Key takeaways OK, we've covered a lot of information in this episode, so I want to wrap up with a few key takeaways to help you think about whether your child needs an IEP:Think about how much or how often your child is struggling. Being proactive can help your child in the long run, not just academically, but also socially and emotionally. Kids can do really well in some areas and still need an IEP to thrive in school. All right. That's it for this episode of "Understood Explains." Tune in for the next episode to learn the difference between IEPs and 504 plans, which is another common type of school support. You've been listening to "Understood Explains IEPs." This season was developed in partnership with UnidosUS, which is the nation's largest Hispanic civil rights and advocacy organization. Gracias, Unidos! If you want to learn more about the topics we covered today, check out the show notes for this episode. We include more resources as well as links to anything we've mentioned in the episode. Understood is a nonprofit organization dedicated to helping people who learn and think differently discover their potential and thrive. Learn more at understood.org/mission. Credits Understood Explains IEPs was produced by Julie Rawe and Cody Nelson, with editing support by Daniella Tello-Garzon.Video was produced by Calvin Knie and Christoph Manuel with support from Denver Milord.Mixing and music by Justin D. Wright.Ilana Millner was our production director. Margie DeSantis provided editorial support, and Whitney Reynolds was our web producer. For the Understood Podcast Network, Laura Key is our editorial director, Scott Cocchiere is our creative director, and Seth Melnick is our executive producer.Special thanks to the team of expert advisors who helped shape this season: Shivohn García, Claudia Rinaldi, and Julian Saavedra.
Understood Explains Season 1Private vs. school-based evaluations for special education
Why do some families pay for private evaluations when the ones at school are free? Find out in this episode of the Understood Explains podcast. families pay private evaluations ones school free? neuropsychologist? person things school psychologist can’t? Listen episode Understood Explains learn answer, involves making diagnoses.Host Dr. Andy Kahn psychologist spent nearly 20 years evaluating kids public private schools. first guest episode Dr. Ellen Braaten. teaches psychology Harvard Medical School. also runs Learning Emotional Assessment Program Massachusetts General Hospital. Andy Ellen explain:How private evaluations compare school-based evaluationsWhy families may want seek one other — bothWhat look private evaluator Ways help cover cost, like asking school pay independent educational evaluationAndy’s second guest parenting expert Amanda Morin. They’ll share tips tricky topic: say child getting private testing evaluated school.Related resourcesPrivate evaluations: need knowPros cons private vs. school evaluationsNeuropsychological evaluations: need knowIndependent educational evaluations (IEEs): need knowWhy different evaluations may different resultsHow-to resources13 questions ask hiring private evaluatorHow get free low-cost private evaluation childDownload: Sample letters including request IEEEpisode transcriptJennifer: Hi, name Jennifer Atlanta. child take standardized assessments, tests, can't retake five months later. happens go school first you've school theirs, use good test, go get private evaluation, person you're paying lot money evaluation can't test themselves. hindsight, wished would done full neuro psych evaluation right beginning paid money up-front privately gotten big picture happening, taken school asked eligibility meeting. could performed whatever wanted do. feel like got backwards.Andy: Understood Podcast Network, "Understood Explains." You're listening Season 1, explain evaluations special education. 10 episodes, cover ins outs process school districts use evaluate children special education services. name Andy Kahn, I'm licensed psychologist, in-house expert Understood.org. I've spent nearly 20 years evaluating kids public private schools. I'll host. Today's episode private versus public school evaluations. We're going cover key things: private evaluations similar different evaluations done public school districts, families may want seek one both, look private evaluator, ways help pay private evaluation. We're also going give ideas say child different types evaluations, say. First, let's hear another parent. Michele: name Michele live Bronx, New York. paid private evaluation. 9:00 morning 5:00. last year pandemic. sort excited day felt going thorough evaluation, going helpful. evaluation report received generic, incomplete. totally really discuss son's strengths, weaknesses, services would need. paid pocket $350. billed insurance company $6,800. Andy: It's common families think getting evaluation private clinic rather school district. Different families may variety reasons. families, child may already gotten evaluation school district, want second opinion. families may prefer control private evaluation. example, may decide share pieces information school. There lot pros cons consider. starters, private evaluations really expensive. time consuming get into. school evaluations free. families go deciding needs? My first guest today going help unpack this. Ellen Braaten associate professor psychology Harvard Medical School, executive director Learning Emotional Assessment Program Massachusetts General Hospital. She's co-author "Straight Talk Psychological Testing Kids." Ellen also mom two longtime Understood Expert, we're thrilled today. Ellen, welcome. Ellen: I'm really happy here. Andy: Ellen, let's talk little bit program run Mass General. understand specializes evaluating kids learning thinking differences. also help train psychologists part Harvard Medical School program. And — understand whole variety different assessment types there, correct? Ellen: do. neuropsychological assessments, think we'll get little while. educational evaluations, intelligence testing. even school observations, well. assess children various kinds learning differences, dyslexia, ADHD, autism spectrum, developmental issues well. Andy: mentioned several types evaluations. tell little bit one they're different one another? Ellen: let give big-picture definitions. neuropsychological evaluation typically implies number different tests measure different types brain functioning. mean attention, memory, language, learning kinds functioning. that's sort like granddaddy assessment batteries.And you'll also see evaluations label behavioral emotional functioning psychological functioning. typically means think is: evaluator looked someone's behavioral functioning, psychological functioning. Things like anxiety, depression, worries. And would think clear definitions one assessments, really isn't. Depending live, area country, sort used interchangeably. would say exceptions term neuropsychological assessment. you'll also see one assessment, called core evaluation. It's battery tests used determine whether child eligible services school. Andy: Yeah, described core evaluation, parents places might hear referred psychoeducational evaluation. there's lot jargon parents wrap heads around. also want add psychologists like Ellen use word "battery," we're referring group tests. So let give quick example. psychoeducational battery commonly includes IQ test, academic achievement testing, sometimes subject-specific tests look reading, writing, math. kind battery, might use tests answer question child learning disability, slow processing speed, trouble working memory? results may point kids one other. kids might above. OK, we've talking different kinds evaluations. people evaluations? one type evaluator type evaluation? providers offer like menu choices? Tell us little bit typically what,Ellen: Typically evaluations done psychologists, even psychologists aren't same. might hear term "neuropsychologist." That's kind psychologist typically neuropsychological batteries. School psychologists typically evaluations school system. you'll also hear term "educational psychologists," "clinical psychologists" — it's different sorts psychologists licensed different sorts testing, Andy: use word "licensed," reminds me — want mention yet another type evaluator parents may hear about, that's licensed psychologist. That's am. Unlike school psychologist, licensed psychologist diagnose mental health conditions. next detail I'm going share bit confusing, it's helpful know: schools hire licensed psychologists like school-based evaluations. psychologists school-based evaluations school psychologists. Kind confusing, know. Ellen: also, there's term "psychiatrist," lot people think psychologist, it's not. Psychiatrists medical doctors specialize treatment psychiatric issues like ADHD would treat medically, typically, sometimes therapy. psychiatrists kinds evaluations we're talking today.Andy: Good know. Ellen, there's one jargony term want us cover. it's real mouthful. It's called "independent educational evaluation," IEE. basically private evaluation, school district pays it. it's free families. We're going dig IEEs minute.
The challenge of keeping my impulsive and hyperfocused son safe
When our family moved to a small suburb several years ago, my then 6-year-old son asked if we could explore our new neighborhood on our bikes. My son has ADHD and autism, and he was quite impulsive at that age. So I was nervous about taking him out in an unfamiliar area. But I agreed.As we made our way down the side streets, we were passed by a pickup truck. “Daddy, look! That truck is an F-350 Super Duty!” my son excitedly said. He’s obsessed with trucks and loves pointing out the makes and models. He was so hyperfocused on the truck traveling away from us that he didn’t see a pothole near the curb in front of him.I called out to him several times, each time louder. “Stop! Look out for the hole!” But he didn’t hear me, even though I was only a few feet behind. He was in his own head, watching the truck and making engine noises of his own. He hit the pothole and went down hard.Thankfully, he wasn’t hurt. And after dusting himself off, he was ready to ride again. But a little way down the road, an older man fixing a car told him that he liked his helmet. My son stopped and told the man his name, adding, “We just moved to this neighborhood.” Before I could stop him, he blurted out our new street address.These are just a few of the ways my son made my wife and me worry about his safety when he was young. We worried he might get hurt because he’s curious and doesn’t stop and think before exploring a new place or trying a new activity. He would get so caught up in things that interest him that he wouldn’t notice potential danger in his surroundings. It was easy to tie myself in knots thinking of the worst thing that could happen to him. One route would have been to shelter him, keeping him inside all day and protect him from the world. But we wanted him to be a regular kid — to do things any kid does. We didn’t want to let our worries limit his world and keep him from all the experiences he should have.That’s why, while facing our own insecurities, we tried to put strategies in place to help him stay safe.For instance, as part of his love of trucks, my son couldn’t resist checking out license plates in parking lots. He would stop to look at a plate he likes, while not realizing that the car it belongs to was backing out of its space.Our strategy in these situations was to always remind him of what we’re doing right now, and what we’re planning to do. We used phrases like, “We are going to the car now, so you need to stay with me and watch out for cars.” We checked in with him along the way to keep his focus: “Are you right with me? Good job watching out.” Honest, specific praise really seems to encourage him.Another safety concern was that my son has always been very social and trusting. He loves to talk to people and over-share information about himself. Here, our strategy during the elementary years was having conversations with him about “stranger danger.” My wife and I told him about “sneaky people” who may seem friendly and harmless, but who may want to take advantage of him or hurt him.If these strategies seem very specific, it’s because each situation was unique for him. Each needed a unique solution. I found a sense of confidence that I could come up with a strategy or solution to help keep him safe. It’s a slow process and takes a lot of practice. But it has paid off now that he’s in his teen years. He’s on his own more, of course. We can’t always be right by his side, warning him about the potholes. But those potholes from his younger years have helped him develop strategies he can call up and use to navigate life on his own.Get tips for teaching your child about personal safety. Read more about why teens with ADHD may take more risks.
In ItSummer reads that embrace difference and disability
In this bonus episode, Rachel Bozek and Gretchen Vierstra share summer reading recommendations and tips to encourage kids to read. In this bonus episode, Rachel Bozek, Gretchen Vierstra, and a few of their Understood colleagues share summer reading recommendations. Learn about books that embrace differences for readers of all ages. Plus, get tips on how to make summer reading fun for kids. Reading recommendations mentioned in this episodeJust Ask! Be Different, Be Brave, Be You, by Sonia SotomayorRosie Revere, Engineer, by Andrea BeatyFish in a Tree, by Lynda Mullaly HuntButton Pusher, by Tyler Page Disability Visibility (Adapted for Young Adults): 17 First-Person Stories for Today, edited by Alice WongRelated resources Summer reading reimagined: How to help all kids enjoy reading9 books that explore and embrace differenceEpisode transcriptGretchen: From the Understood Podcast Network, this is "In It." I'm Gretchen Vierstra, a former classroom teacher and an editor here at Understood.Rachel: And I'm Rachel Bozek, a writer and editor raising two kids with ADHD. We're between seasons right now. Just taking a little break before we get to work on a bunch of great conversations for Season 5.Gretchen: That said, we are not disappearing on you. We'll be dropping bonus content here and there throughout the summer, including today.Rachel: Yes, there have been a lot of water cooler discussions — or, in our case, virtual water cooler discussions — about good summer reads here at Understood, especially for kids who learn and think differently. So we thought it would be a good idea to pass some of those suggestions on to you.Gretchen: First, though, we want to go back for just a minute to a conversation we had last year with Jeremee DeMoir about summer reading.Rachel: Jeremee used to teach middle school and high school. Now he's the owner of a bookstore in Memphis, Tennessee, called DeMoir Books and Things.Gretchen: In our conversation with him. He made the excellent point that even for kids who struggle with reading, summer reading doesn't have to be a burden. There are lots of ways to open them up to a love of books. Let's listen.Jeremee: As an educator, you often deal with children who have learning disabilities, such as like dyslexia, or just issues with focusing — ADHD, ADD. And so for them, it's challenging finding pieces that work for them. But the beauty about it is that literature comes in so many different mediums. As an educator, we know that literacy is an umbrella, and so we know that it's not just reading, it's also speaking and listening. So we find audiobooks that might work for them. You find graphic novels where the text might be a little more chopped up to where it's more digestible.And so when you find something that kids can engage with that is super awesome to them and then finding it in a medium that's accessible to them, then it becomes like this door that's being blown off the hinges and they're able to kind of find something that really fits them.Rachel: That's a great reminder that there are lots of ways to make reading accessible to your kids during the summer.Gretchen: Let's get to our book recommendations. The first one comes from Kim Greene, the editorial director here at Understood.Kim: My summer reading recommendation is "Just Ask, Be Different, Be Brave, Be You." And it's written by Supreme Court Justice Sonia Sotomayor. "Just Ask" is a picture book. Mostly it introduces readers to different characters and tells you more about their differences, but also their superpowers. So it includes characters with autism, Tourette syndrome, kids who stutter, diabetes, food allergies. We're talking a really wide spectrum of the beautiful things that make us all different.I'd recommend this book to any parent or caregiver of a child in elementary school, maybe even a little bit younger. The book is, I think, officially recommended for ages 4 to 8, but I read it with my 3-year-old. It really has this great message about "just ask," which is so innate to what young kids do is they have so many questions, so they just ask.I should say that the book is not encouraging children to go up to people with disabilities and interrogate with them questions and whatnot. It's actually quite clear that that's something that some people don't like, but instead encourages kids to, you know, turn to the adult in their life and to ask questions.Rachel: You know, I've seen that book. And besides having a great overall message, I just add that the illustrations are wonderful. OK, let's get to another recommendation.Craig: I am Craig Woody. I am a senior data engineer here at Understood. I have a summer reading recommendation. One of my daughter's favorite books is "Rosie Revere, Engineer." It's written by Andrea Beaty. It's a great book about a young girl who's got ideas that are different from her classmates and her family. And she finds ways to power through learning and thinking differently and inventing things that not everyone else appreciates.One of my favorite scenes is when her great aunt visits her. Her great aunt is called Rose, but the way she dresses and the way she's presented it definitely implies that she's Rosie the Riveter, because she talks about her time building airplanes and how she never got the chance to fly.That character really — I think it's pivotal for the story, because she steps in and shows little Rosie that you can think differently and you can build things differently. And ultimately, at the end of the day, if you're helping other people, if you're trying to be a good person, the how you get to the end, it doesn't really matter. As an engineer myself, I think that it's great to show people there's more than one way to get to the end.Rachel: How about you, Gretchen? Do you have a book to recommend?Gretchen: I do. Actually, I asked my kids to recommend a book, and they told me about something they both read, probably in about fourth or fifth grade. And the book is called "Fish in a Tree" by Lynda Mullaly Hunt. And it's probably for ages about 10 and up. And it's a fiction book, and it's about a sixth grader named Ally who struggles with reading and writing and has been covering it up by acting out. And it's only when she has a substitute teacher who says to her "I'm going to figure out how to make you stay in this classroom and not get sent to the office" that he discovers she has undiagnosed dyslexia.And that's why my kids said they liked it. They liked it because they said they loved reading about a teacher who really took a moment to care about a kid and see through the acting out and figure out what was going on. But full disclosure, I have not read it myself, but my kids say it's a great read.Rachel: You know, I haven't read that either, Gretchen. But I really love the idea that it's a substitute teacher who comes in, because I think that they get kind of a bad rap a lot of time. And personal story: One of the best teachers that both of my kids ever had and who I remain friends with started out at their school as a substitute. She was in for maternity coverage and at the beginning of the year I was like, "Oh boy, we got a sub for the year." And she's wonderful. And, you know, I think, I think subs — I'm glad to see that they got a little moment in the spotlight here in this book.Gretchen: Mm hmm. So what about you? Do you have a recommendation, Rachel?Rachel: I do. I do. So this is one that I heard about and tracked down for myself. It's called "Button Pusher," by Tyler Page. It's a YA book. So it's really for, like, the 11 to 14-ish or 11 and ups. But I love a graphic novel, so I found it. And it's also a memoir. So it looks like a comic book, but it's the author's own story about his childhood and kind of tells the story of his journey of learning about ADHD and kind of a lot of the things that he ran into as a kid.There are some intense family dynamics with the parents. The book covers counseling and therapy. There is medication talk, all from this kid's perspective and from a very real perspective, because this was his actual experience.You know, one thing that I thought was really interesting, too, is that every so often he kind of breaks from his own story to offer an explanation of the science or the research behind something that's going on in this kid's life. So there is like the "what's happening in the brain right now," and it'll stop. And like that page will be kind of like a different color palette or you just, you know, that you're in a different section for a page or two.And then there is the same kind of thing with like time blindness, when something like related to that is happening in the story. And those are all things that we've talked about here. And so it was really nice to see it kind of applied to this kid's life. So I just, you know, I really enjoyed it from that perspective. And I think it's something that adults might also really enjoy, even though it's technically in the kids' section of the library and in the bookstores.Gretchen: Yeah, I think it sounds really cool. I love the fact that it actually has some science, right? Some information about ADHD in the book. That sounds really great. We actually have one more recommendation from one of our colleagues. So let's listen to that.Jennifer: Hi, my name is Jennifer Spindler and I'm a senior research manager at Understood. The book I'm recommending is "Disability Visibility: First-Person Stories From the 21st Century," and it's written by Alice Wong. It's actually a compendium of short stories written by other disabled writers that she put together as a part of a larger project to bring more disabled voices into literature and into the media. Each of the stories features a person with a disability and difference, and one of the reasons that I really loved it was that you get to see a glimpse of someone's life and an experience that is similar to yours, but at the same time really different.One of the things that really drew me to the book is Alice Wong is a part of a disability movement for ensuring that authors, as well as writers who are neurodivergent, who have chronic illness, are at the forefront of writing their own stories. And reading each of the stories, it helped me diversify in my own mind — the struggles and barriers that people who are not accepted in this world by an ableist society have to go through.I recommend this book for everyone, maybe specifically for adults, because of the reading level. But you know, anyone can really connect to the stories and feel the experience that these writers are speaking about and enjoy it as well as, you know, become more introspective about their own lives.Gretchen: Jennifer's book recommendation sounds like it's obviously great for parents, adults to read, but I bet teens in your families might enjoy reading a collection of stories like that, too. So you never know.Rachel: And you know, don't worry if you also didn't manage to get all the titles that came up here today, like I did not. It's not a problem. We've got all of that information in the show notes from the episode.Gretchen: Well, that is it for today. We really hope you're having a great summer, and hopefully you're reading some great books, too.Rachel: Thanks for listening and thanks for always being in it with us.
What is perseveration?
Many of us get fixated on an idea once in a while. But with some people, it happens more often. Perseveration is when someone “gets stuck” on a topic or an idea. You may have heard the term in regard to autism, but it can affect others, too.People who perseverate often say the same thing or behave in the same way over and over again. But they can get stuck on their emotions, actions, and thoughts, too. And they do it past the point where it makes sense or will change anything. It can be frustrating for everyone involved, especially the person who’s stuck. It's not that they won’t stop. It’s that they don’t know how to stop. They may not even know they’re perseverating in the first place. It’s like they’re stuck in a loop they can’t get out of. There’s a difference between perseverations and obsessions. Obsessions are more severe and are often part of a mental health condition called obsessive compulsive disorder (OCD). In some cases, people may have both OCD and other learning and thinking differences, like ADHD.People who perseverate aren’t being defiant or stubborn. They have challenges that cause them to get stuck. They might struggle with managing stress, processing information, shifting attention, or putting the brakes on certain behaviors or thoughts.Perseveration can also be a coping mechanism for people when they feel overwhelmed, anxious, or not familiar with a situation.
In ItWhat is neurodiversity? An interview with the host of “The Neurodiversity Podcast”
The term “neurodiversity” seems to be everywhere right now. But what exactly does it mean? And how does it apply to kids who learn and think differently? The term “neurodiversity” seems to be everywhere right now — in the news, the workplace, and even in your podcasts. But what exactly does it mean?In this episode, hosts Amanda Morin and Gretchen Vierstra talk with Emily Kircher-Morris, counselor, author, and host of The Neurodiversity Podcast. Emily has a unique perspective on neurodiversity: She’s a neurodivergent parent to twice-exceptional kids. Listen in to hear Emily talk about what neurodiversity means, how it applies to kids who learn and think differently, and why the language we use matters. Related resources What is neurodiversity?All about twice-exceptional students The Neurodiversity PodcastTeaching Twice-Exceptional Learners in Today’s ClassroomsRaising Twice-Exceptional ChildrenEpisode transcript Amanda: Hi, I'm Amanda Morin. I'm the director of thought leadership and expertise for Understood.org. I'm a parent to kids who learn differently, and I'm a neurodiverse human.Gretchen: Hi, I'm Gretchen. I'm an editor at Understood. I'm also a former classroom teacher and a mom of two. And this is "In It.""In It" is a podcast from the Understood Podcast Network. On the show, we talk to parents, caregivers, teachers, experts, and sometimes even kids. We offer perspective, advice, and stories from and for people who have challenges with reading, math, focus, and other learning differences.Amanda, I've heard your introduction a bunch of times, but I've never heard you introduce yourself as a neurodiverse human. That's a new one.Amanda: Yeah. I thought it was a good segue into our conversation today about neurodiversity because the term "neurodiversity" seems to be everywhere right now. It's in the news. It's in the business world. But we really wanted to explore what it means.And for the answer to this question and more questions, we thought it would be best to talk with my friend Emily Kircher-Morris, who's the host of "The Neurodiversity Podcast." She's also a fellow author, and her book "Teaching Twice-Exceptional Learners in Today's Classroom" came out in August.Gretchen: Oh, hooray!Amanda: Right. And Gretchen, like us, Emily has been a teacher. She's taught in gifted classrooms. She's been a school counselor. And these days, she lives in Missouri. She has a private practice as a licensed professional counselor, and she specializes in helping gifted and twice-exceptional kids.Gretchen: Emily, welcome. I'm so happy to meet you.Emily: Yes, I'm so happy to be here. Thank you for the invitation.Gretchen: And Amanda just gave a great introduction of you, but it's my first time meeting you, so why don't you tell us a little bit more about yourself?Emily: Well, I am also a neurodiverse individual, which is part of why I have the passion that I do for this field. I have three kids. The older two are identified as twice exceptional, and my littlest is only in first grade, but, you know, we'll see how that all goes. I think we can probably make some good predictions, but, you know, this is my life between the podcast and my clinical mental health practice and just kind of advocating and supporting neurodivergent and twice-exceptional people.Amanda: So, basically, what you're saying is you live this the same way the rest of us do. Emily: I do. And, and you know, it's interesting, you know, how people, like, refer to parenting experts or whatever, and I'm going, "Oh, please." I talk about it a lot, and I read about it a lot, and I'm very good at brainstorming solutions, but I do not have it all figured out. We're all in this together. We're all trying to figure it out as we go. And if we can collaborate and work together on it, then that's just best for everyone.Amanda: And we thought who better to collaborate with on an episode about neurodiversity than the host of "The Neurodiversity Podcast." Right? I mean, it's literally in the name of what you do.Emily: It's literally in the name.Gretchen: Yeah. So speaking of that name, how would you actually define neurodiversity?Emily: So. Neurodiversity really is a concept that allows for a lot of different disorders or diagnoses that people have and recognizes that it's not necessarily always a deficit.A neurodivergent person has brain wiring that is atypical compared to the normative population, but that doesn't mean that they are dysfunctional or broken. So when we talk about autism or ADHD, these are things that are innate, that are in place since a person is born; they are not acquired. And there's nothing that you're going to do, like when I have kids come into my counseling practice, who are ADHD'ers or are autistic, like I'm not teaching them how to not have ADHD. Like I'm not, I'm not going to get them to not be autistic. Like that's just part of who they are. And neurodiversity really recognizes that, just like biodiversity in the natural world, having variation is good for the world, and it just kind of normalizes some of that while recognizing that these different neurotypes might operate in the world a little bit differently, but that doesn't mean that it's bad.Gretchen: Emily, that's such a beautiful way to explain the need for this term. And I'm wondering if you can also get into a little bit about what specifically falls under the term "neurodiverse."Emily: So we're talking about, like I mentioned, ADHD; I mentioned autism. We're talking about dyslexia, dyscalculia. Um, some people would put diagnoses like schizophrenia or bipolar or OCD in that category. Most people would not put diagnoses like anxiety, like generalized anxiety or, um, you know, major depressive disorder, but there's kind of like, in my mind, I visualize this Venn diagram where we have neurodivergent diagnoses and then we have mental health diagnoses, but there's definitely some overlap, like OCD, to me, I'm not quite sure where that should really fall.Amanda: I would say neurodiversity. I actually have OCD. So, to me, it feels like it.Emily: Well, it's, it's interesting because there's not necessarily an agreed-upon definition of what neurodiversity is or is not because I also, I agree with you on that, Amanda. But I also think there are some instances where, if the premise is that neurodiversity is something that somebody is born with, OCD is not always something that somebody is born with. It's like, depending on who you're talking to, you're getting different parameters for where things fall. And so, that's kind of why I say, I think it kind of straddles a little bit, depending on the individual.And I would also say that for example, um, I would put cognitive diversity or cognitive giftedness in the category of neurodiversity, and I think that's one that doesn't get recognized quite often. And I would also say twice-exceptional individuals, who are gifted and have another one of those diagnoses or a mental health diagnosis, if they need additional supports, like, they are also then neurodivergent.It's very broad and ambiguous is my point, but why I like the term. I do talk about my clients both as a group but also individually when I'm talking to their parents, I use the term "neurodiverse" as a way to explain and normalize their experiences, you know, because I feel like what happens is sometimes we fall into this, like, "Oh, well, they're just a little quirky." And I think more than anything, what that does is it minimizes a person's struggles. It disallows them access to accommodations. It enhances the stigma that surrounds those diagnoses.And I'm very much a believer that let's just call something what it is. And if we don't know what it is, there are kids, especially in my practice, who maybe we can tell are neurodivergent, like, we just know, but is it ADHD? Is it autism? Like, what exactly is going on? It can be very difficult to tease out. Do we need a full psychological evaluation? Do we need it for an IEP or a 504? Do we need medication? If we don't need any of those things, is it useful just for the person to have a label? Sometimes that's empowering for people to know what to call something. But sometimes we can just go, you know, they're neurodivergent, their brain works differently, and we don't necessarily have to drill down much further than that. It can be kind of an umbrella term.Amanda: That's super helpful. And also, as I'm listening to you say that, I had this moment because I realized when I talk about myself now, I talk about being neurodivergent. Diagnoses, labels, how that impacts me. But when I talk about who I used to be when I was a kid, I often will say I was a quirky kid. And I never thought about the fact that, that's actually, like, what I'm doing there is I'm minimizing who I was. Right?Emily: And you were an unidentified neurodivergent learner.Amanda: I was an unidentified neurodivergent learner. I wasn't just a quirky kid. There was actually something bigger there. I need to stop saying that. I need to stop saying I was a quirky kid.Emily: You know, I also want to just address the fact, though, that there are a lot of folks who like to talk about neurodiversity as a superpower. And I think that is also kind of like talking about like being a quirky kid. I think it diminishes the needs that go along with it.And there is nobody who is a part and really active in the neurodiversity movement who denies that being neurodivergent can be a disability. And what does that really mean? You know, Amanda, it's like, you know, I have glasses as well. It's like, I can see as long as I have the accommodation of my glasses. If you take away my glasses, I can't see anything.Amanda: Right.Emily: So I am then disabled. I'm unable to function in the world as others do. And so if I am an ADHD'er and I need certain accommodations in order to be able to focus, or if I have certain sensory processing needs, I can still fulfill my potential. I can still live my life as long as those accommodations are put in place. But if the world refuses to put those accommodations in place, then I am disabled.Amanda: And that's the social model. Like that's something that you and I talk about, know about, and I think I'm just going to like, take a pause and, you know, just for the listeners who don't —Gretchen: Good idea, maybe for me too.Amanda: The social model of disability is speaking about how you interact with the environment, and that the environment is what can cause you to feel more or less disabled. And it's not that you are inherently disabled, right? It's how the environment interacts with whatever differences or, you know, challenges that you have. You know, like, if we didn't have to read, the glasses wouldn't matter, right? If we didn't have to see each other, the glasses wouldn't matter. I just think it's important to note that that's sort of where that social model comes in is, is it's different than a medical model that says there's something inherently wrong with a person, right? Emily: And the neurodiversity movement, and neurodiversity just in general, lives in the world of the social model of disability.Gretchen: Emily, I've noticed you've been talking about people who may have ADHD as ADHD'ers, right? So that, I'm noticing, is different than some other language that I've heard where it's person first, and then the difference. And the way that you've been speaking sounds to me like the neurodivergent first. Can you explain that?Emily: Absolutely. I am an ADHD'er; I have a diagnosis of ADHD. I was given that diagnosis, but without the ADHD, I am not who I am. I am no longer Emily. There is just so much of that that is inherent because it is part of my neurological wiring, and neurodivergent communities were not the first to embrace this.The Deaf community — they use identity-first language: "I am a Deaf person." I believe that blind and visually impaired people also use identity-first language, because you can't separate it from how they interact with the world and how they see themselves. Autistic individuals. I am autistic. I'm not a person with autism.It's not like you can just like, get rid of that pesky autism, and then everything's just going to, you know, work OK. And we don't want to, we don't want to get rid of those things. Like, the reason I have the ideas that I have, the reason I can have 12,000 million things going on all at once is because the way my brain works, and if my brain didn't work that way, I wouldn't be an ADHD'er, but I also wouldn't be me.And there's an ownership to that, right? Like, this is who I am. I'm not perfect. I have strengths, I have struggles, but don't try to fix me because of the way my brain is wired. Somebody who is dyslexic, for example, what are the skills and the compensatory strategies that they build, and how does that influence their personality and how they interact with the world and how they see themselves? Like, you can't extricate that.Amanda: That makes sense. I want to actually circle back to something because we touched on it a little bit — is the "twice exceptional" thing. Emily and I both are twice exceptional, which is such a strange phrase. Sometimes you hear it as 2e; I'd love for you to talk about what that means.Emily: Yeah. So maybe I'll just go back and share a little bit about my story. So when I was growing up, my mom was a special educator in the school district where I attended school. And thank goodness, because I was a hot mess. And so she was on it, but she insisted, you know, when I was in second grade, that I was screened for the gifted program. She's like, this is not typical development, you know, with the things that I was doing and the questions I was asking and how I was learning. And so. Yeah, the district tested me and I was placed in the gifted ed program. But then by the time I was in fifth grade, I was really struggling. I mean, I have teachers who tell the story about having to dump out my desk to find my work. And we could get in a whole lot of different conversations about my experiences there, but, but the bottom line is I was really struggling.And so my mom went and found a neurologist. This was at a time that ADHD was still pretty new. It was very rarely diagnosed in girls. And I had teachers who would say, "Well, we don't think she should be allowed to go to her gifted education program because she's not getting her work turned in. I'm like, "Well, you're asking me to write spelling words five times each and I already know how to spell those words." So I don't want to do that. And that was at a time that we didn't even have the terminology "twice exceptional." So, "twice exceptional" means gifted and another diagnosis. So when I started out as a teacher, I started in just the general education classroom. As far as executive functioning goes, that was a really difficult environment for me.And so I quickly moved and got a master's degree in education with gifted education certification. And I've taught at both the elementary and the middle school levels in gifted ed programs. But when I got that master's degree, we didn't even talk about the term "twice exceptional." So this is like within the last 15 years that people have even really started to understand that somebody can have cognitive giftedness and have another diagnosis, and that they can still deserve and need services both for their cognitive ability to challenge them, but also special education services at the same time. And this is like blowing people's minds in the education world. Cause they just don't know where these kids fit. And when I was taught in the gifted ed classrooms, like that's where, like I found the kids who I connected with and they were of course the twice-exceptional kids, and I wanted to do more to support them.So I went back and got a second master's, in counseling and family therapy. And that's where I specialize with those kids. My mission is to protect those kids from some of the experiences I had as a kid, because it really sucked growing up in a world that didn't understand twice exceptionality.Amanda: Absolutely. You know, there's nothing quite like knowing there are things that you are brilliant at doing, and there are things that you are falling down at doing, and not being able to know why they both happen at the same time. There are some states now that look at gifted education as special education. And I think those are states that are doing it right, right? Because they're looking at the fact that it's specialized instruction, no matter why you need that specialized instruction.Going back to the whole parenting experts thing. I do think that there's an expectation sometimes when you have a neurodiverse child, when you have neurodivergence in your home, when you have twice exceptionality, there's this expectation that you've got to get it right as a parent; that you know how to do this. And I am here to tell you, you have no idea. Like, I have no idea how to do this.Emily: It changes day to day.Amanda: It does. And I'm not automatically a better, more prepared parent because of the kids I have. I just think it's important for parents to know that just because you have a child who is neurodivergent, you have a child who's twice exceptional, it doesn't mean you have to be better at parenting than anybody. You're just doing your best, right?Emily: You're parenting your child.Gretchen: I like that. But I still will go to you for advice, Amanda.Amanda: Well, you know, now you know Emily, so there we go.Emily: There's not so much. I always feel like, people will say, "Well, what should I do?"And it's not so much advice, but it's like, well, what have you tried? What other options are there? And like, let's just brainstorm it together. I might have more ideas just because I do this every day and brainstorm with people. And I've seen things that work for other families, but I am not the expert on your child.You're going to know what might work for your personality and their personality for the specific thing that's going on. But sometimes you've just got to step back for a minute and kind of figure out, "What could I do differently? This isn't working. I need to do something different. What is that different thing?"Amanda: Well, if you just recognize that you need to do something different is a big step too. Emily: You know, one thing I would, I would say to that, Amanda — and this is another one of my soapboxes that I like to get on, especially when it comes to neurodiversity and parenting neurodivergent kids — is that so many of us were raised with very behaviorally based interventions, meaning disciplines, as far as rewards, punishments, those sorts of consequences.You will not bribe your neurodivergent child into executive functioning. Like, that's just not how it works. And so taking things away from them or promising them whatever if they are able to do X, Y, and Z, it doesn't solve the problem. It doesn't teach the lagging skill. You might get some short-term benefit, but we have got to move away from behavioral solutions for neurological wiring difficulties.I think we do so much damage to kids by giving them consequences for things that really — not that they can't control, but they don't know how to control.Amanda: That's a soapbox I will stand on with you anytime. Well, Emily, thank you so much for talking to us today. Gretchen: So great to meet you and talk with you today.Emily: Thank you for having me. It's been a pleasure.Amanda: You've been listening to "In It," part of the Understood Podcast Network.Gretchen: You can listen and subscribe to "In It" wherever you get your podcasts.Amanda: And if you like what you heard today, please tell somebody about it.Gretchen: Share it with the parents you know.Amanda: Share it with somebody else who might have a child who learns differently. Gretchen: Or just send a link to your child's teacher. Amanda: "In It" is for you. So we want to make sure that you're getting what you need.Gretchen: Go to u.org/init to share your thoughts and also to find resources from every episode.Amanda: That's the letter U, as in Understood, dot O R G, slash "in it." You can also email us at InIt@understood.org.Gretchen: As a nonprofit and social impact organization, Understood relies on the help of listeners like you to create podcasts like this one to reach and support more people in more places. We have an ambitious mission to shape the world for difference. And we welcome you to join us in achieving our goals. Learn more at understood.org/mission.Amanda: "In It" is produced by Julie Subrin, with special help this week from Anna Mazarakis. Justin D. Wright mixes the show. Mike Errico wrote our theme music. Laura Key is our editorial director at Understood. Scott Cocchiere is our creative director, and Seth Melnick and Briana Berry our production directors. Thanks for listening, everyone. And thanks for always being in it with us.
Her Son With Dyslexia Didn’t Like to Read, So She Wrote a Book He Loved
When Rebecca Laffar-Smith’s son Joshua was in grade school, he would shut down at the mention of anything word- or book-related. He has dyslexia, as well as autism, and he struggles to read. Because of his difficulties, his self-esteem plummeted. He hated school.A big part of the problem, says the Australia-based Laffar-Smith, was that Joshua couldn’t find books that matched his interests. “A 10-year-old struggling reader may have 6-year-old ability along with 12-year-old interests,” she explains. “There aren’t a lot of books that tackle ‘big kid’ topics with language Joshua could read.”When Joshua was in fourth grade, Laffar-Smith decided to start homeschooling him. Like her son, Laffar-Smith has dyslexia. But as a professional writer and editor, she’d found a way to love and embrace books, and she hoped she could do the same for her son.A ray of hope came from her son’s love of penguins. Laffar-Smith wondered if she could use his interest in penguins to get him reading. Eager to try, she and Joshua, along with his older sister Kaylie, began to create stories revolving around penguins. They started to brainstorm and plan a storybook as a homeschool project. They even hired an illustrator and designed the book to make it more pleasant to read, with a crisp font, big images and lots of spacing for text. And that was how P.I. Penguin was born. It’s a children’s book featuring a private investigator penguin who solves crimes and mysteries for his animal friends.The process of thinking up stories and creating the book helped spark Joshua’s interest in reading. All of a sudden, he wanted to read about how P.I. Penguin would save the day. He wanted to follow P.I. Penguin’s adventures.The plan was to print just a single copy of P.I. Penguin for Joshua to enjoy. But then Laffar-Smith began to think other kids might also benefit from the book. After all, from her own experience, she knew there was a need for age- and interest-appropriate books for struggling readers.Laffar-Smith had also self-published other books, including a science fiction novel, so she understood the business. Children’s book publishing seemed to be a natural next step.To get her plan moving, she founded Aulexic, a small publishing company. The company focuses on books for early readers with language difficulties. The company’s name is a play on the word dyslexic, with the dys (or disadvantage) replaced by au, its opposite. After Aulexic was founded, Joshua was also diagnosed with autism, and the family embraced au as having a second meaning. And some local readers like to think the au stands for Australia.The first P.I. Penguin book sold a number of copies, which Laffar-Smith found encouraging. So the family—mom, Joshua and Kaylie—continued to write. There are now four P.I. Penguin books, with more in the works. The stories are written under the name “Bec J. Smith,” a combination of their names.“I needed to bring back Joshua’s love of stories and break down the barrier to embracing reading,” says Laffar-Smith. “P.I. Penguin was the answer for us. Reading, learning and writing have become a way of life in our home.”Today, Aulexic offers picture books and short chapter books. Each story is filled with rhyme and rhythm. To help kids connect with the stories, words are concrete and images are vibrant. And the text and formatting are simple and free of distractions.Many parents have told Laffar-Smith that their kids with dyslexia are learning to love to read thanks to P.I. Penguin. “Joshua is also so proud of the books,” she says. “His ideas and opinions help shape what we publish.” Now 12, Joshua wants to read and continue to create more books. Coming from a child who once hated reading, she says, this is a “true milestone.”The family is pleased to see the changes they’re making in the lives of those with reading issues. Laffar-Smith says, “We're hoping Aulexic will continue to grow and flourish in the years to come.”Check out books for reluctant readers in preschool to grade 2 and in grades 3 to 5. You can also watch a video of children’s book author Andrea Davis Pinkney sharing tips for encouraging reluctant readers.Any opinions, views, information and other content contained in blogs on Understood.org are the sole responsibility of the writer of the blog, and do not necessarily reflect the views, values, opinions or beliefs of, and are not endorsed by, Understood.
In ItTo medicate or not to medicate ADHD: One family’s story
How do you decide if ADHD medication is right for your child? Hear one family’s journey and get answers to common questions about ADHD medication. ADHD medication. How do you decide if it’s right for your child? It’s a very personal decision that often takes time. Learning about the experiences of other families can help. In this episode, hosts Rachel Bozek and Gretchen Vierstra talk with Amelia, a mom whose son started taking ADHD medication during high school. Amelia shares the journey that led to the decision to medicate, including the worries she had. Find out how her son feels about taking medication. And hear Amelia’s advice for families who are making this decision. Plus, get answers to common questions about stimulant medication from Dr. Kamille Williams, a psychiatrist who has lots of experience talking with families about ADHD medicines. Related resourcesADHD medication side effectsHow does ADHD medication work? Listen to this episode of Understood Explains Season 2 to learn more about medication: ADHD medication: What do I need to know? Episode transcriptGretchen: From the Understood Podcast Network, this is "In It," a podcast about the ins and outs...Rachel: ...the ups and downs...Gretchen: ...of supporting kids who learn and think differently. I'm Gretchen Vierstra, a former classroom teacher and an editor here at Understood.Rachel: And I'm Rachel Bozek, a writer and editor raising two kids with ADHD. Today we're talking about ADHD medication and how to figure out if it's right for your kid.Gretchen: Later, we'll be putting some questions to Dr. Kamille Williams, a psychiatrist in Atlanta who has a lot of experience talking with parents and kids about the benefits and risks of medication.Rachel: But first, we're talking to Amelia. Amelia is the mother of a boy we're going to call Sam, who started on ADHD meds just before his first year of high school. Getting to that point was a long and winding journey, and Amelia's sharing her family's experience with us in the hope that it might help other families find their way a little bit more easily.Gretchen: We were so happy to welcome her onto the podcast.Rachel: Hello. It's really nice to meet you.Amelia: Yes, you too. I'm so happy to be here.Gretchen: So I think we're going to just start off by having you tell us a little bit about your son.Amelia: He is 14, and he has just really started to become a teen. And what I mean by that is that the irritation levels that he has with his parents have really ratcheted up an extra notch in the past few months.Gretchen: I totally get that.Amelia: So, yes. So, he's 14. He's a freshman in high school. He's really into art. He's really into television and comedy and "The Simpsons" and "South Park" and all of that kind of stuff.Rachel: So when did you first realize that he might have a learning or thinking difference?Amelia: Really, really young. But I think we were kind of in denial about it for a super long time. But I remember in pre-K, he said that school was so boring that he spent time — they had like a letter border around the edge of the room, the ABCs. And he was very proud that he not only could do his ABCs backward, but he could do the whole song. And he's like, yeah, that's what I do with my time at school.And we got called in frequently by his pre-K teacher — not because he was disruptive. He's always been very good at sitting in one place and focusing. But because he constantly asked questions. And we were young, new parents and we're like, oh, we thought that that was a good thing, right? Like kids, you know, smart kids ask a lot of questions. So we kind of like kicked the can down the road a little bit.But he really hated school pretty consistently from kindergarten on. By the time fifth grade rolled around, things were not getting better. And I remember going in, like to a math class, you know, they did one of those, like invite the parents in for an hour in the morning things. And it was a math demo. And I could see immediately sitting with him that the other children — not all, but most — were doing, you know, one worksheet and then a second worksheet and then a second one. Like it was meant to be a fun math thing. And for my son, it was just not that way at all. He was stuck on problem one and two the entire time.Gretchen: It was at that point that Amelia and her husband decided it was time to take Sam's struggles in the classroom more seriously. They set up a meeting with the school where it was recommended that they get him a full neuropsych evaluation, which they did.Amelia: And that revealed, you know, the ADHD inattentive, also mild ASD — autism spectrum disorder. So mild that nobody had picked up on it prior. Oh, and also a processing issue with writing.Rachel: All of this was a lot for Amelia and her husband to take in. But they were glad to have some answers. That said, they weren't sure how Sam would take it.Amelia: When we told him, we really tried to frame it as, you know, this is actually kind of a superpower. Like people who have ADHD can focus so intensely on the things that they love and can be so good at the things that they love. And he cried. He cried a lot. And he — it was not, it was not sad tears. He seemed so relieved to have a name for what was going on with him. And then when he heard that there was medication available, he was like, "Oh my God. Well, you know, maybe I should take that."Gretchen: So, Sam was all for trying the meds. But Amelia and her husband had a bunch of concerns.Amelia: I sort of just thought it was like legal speed, right? I thought that he wouldn't sleep. I thought that he wouldn't really eat. I think I just really had a lot of biases around it. Like it's going to make him into, like, a robot who can do school, right?Rachel: I think the concerns that you just mentioned are so common.Amelia: Oh, can I just say one other thing I thought, which is actually opposite to the truth. I thought that it would be a gateway to relying on other drugs, self-medicating in other ways. That was another thing that I really, you know, just underneath it all, part of why I resisted. Because, of course, that's something you worry about when, you know, your kid is maybe not a big joiner anyway, and maybe has rebel tendencies anyway. right? It's in the back of the back of my mind. So that was another reason.Gretchen: Despite all these reservations, Amelia and her husband were slowly coming around to the idea of trying the meds. And then midway through sixth grade, COVID hit.Rachel: At that point, Amelia says the idea of having their son taking a stimulant while being stuck at home all day just seemed like a really bad idea. She was convinced he would be bouncing off the walls. So they put it off again.Gretchen: Then a year later, Sam began having pretty debilitating health problems. He was ultimately diagnosed with Crohn's disease. And once again, trying out meds for his ADHD got put on the back burner while they adjusted to this new challenge.Rachel: Throughout this time, Sam continued asking about the medication. And so finally, toward the end of middle school, with his health issues under control, they decided to give it a go. And the results were almost instantaneous.Amelia: So he started the spring semester of eighth grade, and things improved so quickly. It was kind of a wonder. Not only was it not painful anymore for him to sit and do school, not only did he stop saying things like "I'm the dumb one in class," right? Because that had been going on since sixth grade. Like "I'm the dumb one. You guys think that I'm smart, but I'm dumb.".But that was his first experience in all of middle school of having a real friend group. And I have to think that there's a correlation. I think him finally being able to focus on conversations and just sort of not dreaming the day away, let him tune in socially in a new way.Gretchen: Wow. And what did he say about it to you? About how it was making him feel at school?Amelia: He had a few rough days, like when we first started, where he's like, I feel weird. And, you know, even then I'm like, oh, do you want to stop? And he's like, no, I want to, you know, see how it goes. And very quickly, like once we got the dosage worked out and the type of medication worked out, he was like, oh, this is what it's like for other kids. Like, the teacher tells us what to do and they just hear it and don't have to ask three more times "What are we supposed to do?" So I think it was a really big relief for him.Rachel: Have there been any negative side effects or anything you've seen that has made you second-guess this decision?Amelia: I still, in the depths of my mind, I'm like, you know, I'll ask questions of myself, right? Like, is he going to be on this forever? And then I think, well, that wouldn't be so bad because he's so much more functional on it. He doesn't want to not take it on weekends, because he just simply functions better in every way when he is taking the medication.One little concern we have because of the Crohn's just has to do with eating and growth. He doesn't have too much of an appetite during the day. So we try to get calories in first thing in the morning and at the very end of the day, you know, he'll eat a significant amount. So, you know, that's on my mind a little bit. But he almost slept better than before. It was almost easier for him to go to sleep, which shocked me. So I think that he could have had an easier road through middle school had we just started sixth grade having him on medication.Gretchen: Well, just know that you're not alone in saying that. I wish we had done it sooner. There's so many families that say that. Because it's hard. I'm sure Rachel can attest to that too. It's really hard.Rachel: Absolutely. I'm curious if you have any advice for other families, people who are going through this process and trying to figure out whether or not they should give medication a try for their child. Do you have any suggestions or recommendations for how they can think about it?Amelia: I think it's really hard to see your child in pain, whether the pain is social or whether the pain is like "I'm dumb," or, you know, there is a pain inherent in "I hate school," right? That sucks. You spend all your time at school like, should you hate it?So I would say for families who have this diagnosis or even suspect that this might be lurking, right? And maybe a teacher hasn't flagged it, but something's off? To just really kind of listen to that and think, you know, could my child's day-to-day life be sort of happy and manageable if it isn't now?Not to say that, you know, it takes a lot of things to have a happy and manageable life. It's not only, you know, you take a pill and life is perfect. But to have this going on in your brain and have this possibility and kind of leave it on the table, if your child is really suffering with school, I guess I would just say to try to not pathologize what could be an amazing tool that will allow your child to sort of flourish instead of just avoid.Gretchen: Amelia, we're so thankful that you were willing to come on our show and tell your story. Thank you so much.Amelia: It's my pleasure. If it can help anybody, you know, I'm thrilled to do it.Rachel: Thank you. Amelia's story gets at so many of the anxieties I think a lot of parents have when thinking about trying stimulants for their kids. We thought it might be helpful to add some insights from an expert to help us understand these medications a little better.Gretchen: So we reached out to Dr. Kamille Williams. Dr. Williams is an associate professor of psychiatry and behavioral sciences at Morehouse School of Medicine.Rachel: She specializes in child and adolescent psychiatry and in the assessment and treatment of neurodevelopmental disorders. She's also a psychiatrist with a practice in Atlanta.Gretchen: Before we turn to Dr. Williams, we want to make clear to really important things. One is that ADHD medication is not the only way to treat ADHD. There are absolutely non-medication ways to help kids with ADHD. Families can work with a doctor or therapist to figure out what's the best path for them.Rachel: And two, if you do decide to give medication a try, remember that it may take some trial and error to find the right one and the right dose for your kid.Gretchen: OK. So getting back to Dr. Williams, the first thing we wanted to ask her was, what do you say to parents or caregivers who aren't comfortable with the idea of giving their kids a stimulant because they think of it as an upper? You know, the type of thing some folks take when they need to pull it all-nighter to finish a project?Dr. Williams: I would say that their concern is definitely valid and especially with this off-market use that getting it from doctors who prescribe it. But in reality, individuals who have sort of ADHD have an imbalance that that medication actually corrects. So for them, taking the medication will actually regulate the symptoms.Rachel: So it's like they have a different starting point.Dr. Williams: Exactly. If we compared it on a scale, they would be at a two for the type of neurotransmitter that the medication regulates, whereas average people could be like a five or six. And so taking the medication will boost them to the five or six. Whereas someone who's already out of five or six would just go straight to a ten.Gretchen: Dr. Williams also confirmed what Amelia said, that while we may fear that these medications could serve as a gateway to drug abuse or addiction, research shows the opposite. Generally speaking, she says, those who deal with addiction are actually trying to self-treat for what they're dealing with.Rachel: For those families who are trying one of the stimulant medications. Dr. Williams has some advice. First of all, as was the case with Sam, they may affect a child's appetite.Dr. Williams: Let parents know when they're prescribed stimulants that it's good to have a hearty breakfast when they take the medicine, because usually around lunchtime, they're not going to have that desire to eat because they're not going to feel hungry. And then once the medicine wears off towards the afternoon and evening time, it's going to ramp back up that they're going to try to catch up on the calories that they didn't get throughout the day because of the medication.Rachel: What's right could change over time.Gretchen: Yep.Rachel: As your kid gets older and they're in high school or college or maybe working a job, they may need to take a booster dose, which is smaller than a regular dose, to help them focus in the evening.Gretchen: But it also means that kids can take a break from the medication if they want to — say, on the weekends.Dr. Williams: Definitely. We promote the idea of having what's called drug holidays. So the weekends, spring break, holiday break, things where they don't have to be focused to perform their best and do things, to not take the medication, just be. Because it works in the body for the amount of time that it's designed and it doesn't have like lingering effects compared to other medication.Gretchen: OK. So some families might wonder this: Is medication a cure-all for someone with ADHD? Like if their kid finds the pill that works best for them, do they just take it for the rest of their life and that's it? ADHD is no longer a thing to think about.Dr. Williams: I like to tell my parents and families that ADHD, like anxiety, is like diabetes, like blood pressure. You manage it. It will ebb and flow and change. The older you get, certain symptoms sort of resolve itself, but they're certain symptoms that will continue to stay. And that — it just depends on how life goes for a person if they decide to take medications versus not.There's ebbs and flows where there's periods of like I want to try without being on medications versus like, I think I want to restart medications again because it's been helpful. So I wouldn't call it a cure-all. This is a form of treatment that helps manage symptoms so that you're able to be your best self and be stable and do the things that you like to do.Gretchen: Well, we want to thank you so much for answering all our questions about medication today.Dr. Williams: Yes, of course.Rachel: Thank you so much.OK, so we know that was a lot of information and we just hope that it was really helpful to you, whether you are thinking about trying medication for your child for the first time, or maybe you've tried something and it doesn't seem like it's working and you want to look into something new.Gretchen: Yeah. And of course, a reminder that any decision about taking a prescribed medication should be made together with a doctor or psychiatrist who can help you figure out what's going to work best for your child.Rachel: And if you still have questions about ADHD medications, we have an excellent episode of "Understood Explains" where Dr. Roberto Olivardia gets into all of it. We'll link to that episode in our show notes.Gretchen: You've been listening to "In It" from the Understood Podcast Network.Rachel: This show is for you. So we want to make sure you're getting what you need. Email us at init@understood.org to share your thoughts. We love hearing from you.Gretchen: If you want to learn more about the topics we covered today, check out the show notes for this episode. We include more resources as well as links to anything we mentioned in the episode.Rachel: Understood.org is a resource dedicated to helping people who learn and think differently discover their potential and thrive. Learn more at understood.org/mission.Gretchen: "In It" is produced by Julie Subrin. Briana Berry is our production director. Justin D. Wright mixes the show. Mike Errico wrote our theme music.Rachel: For the Understood Podcast Network, Laura Key is our editorial director, Scott Cocchiere is our creative director, and Seth Melnick is our executive producer. Thanks for listening.Gretchen: And thanks for always being in it with us.
- In It
To disclose…or not?
Who do you tell about your child’s learning and thinking differences? When? Does the explanation depend on the situation? And how are you preparing your child to own those ongoing disclosure decisions?Who do you tell about your child’s learning and thinking differences? When? Does the explanation depend on the situation? And how are you preparing your child to own those ongoing disclosure decisions?This episode, hosts Lexi Walters Wright and Amanda Morin tackle these questions. They talk with families whose experiences range from triumphant to cautionary — and in-between. You’ll hear from a mom whose daughter’s very public dyslexia disclosure turned her into an author. And from a parent whose son’s refusal to disclose cost him a scholarship.Advertising pro Wilson Standish shares why he’s still cautious about disclosing. And expert Manju Banerjee, PhD, gives tips to help parents with the sometimes-scary task of passing the torch to their young adult kids.Related resourcesTips for talking with family members about your child’s challengesPros and cons of disclosing learning and thinking differences at collegeFind community on the Wunder appEpisode transcriptAmanda Morin: Hi. I'm Amanda Morin, writer with Understood.org and a parent to kids with learning and thinking differences. Lexi Walters Wright: And I'm Lexi Walters Wright, community manager for Understood.org. And we are "In It." "In It" is a podcast from Understood for Parents. On our show we offer support and some practical advice for families whose kids are struggling with writing, social skills, motor issues and other learning and thinking differences. Amanda: And today we're talking about disclosure: who we tell, when we tell, and how we tell when it comes to our kids' learning and thinking differences. Lexi: So Amanda, will you kick us off: What is disclosure? What do we mean when we say the word "disclosure"? Amanda: Disclosure is a really fancy way of saying "talking about it." So when we're talking about our kids having learning and thinking differences, it's who do you tell that to? Disclosure is deciding to tell family. It's deciding to tell teachers. It's deciding under what circumstances it's a parent's job to talk about it, under what circumstances you throw that to your child to make that decision. So disclosure is a really big idea, right? It's something we talk about a lot when it comes to having kids with learning and thinking differences, because there are some circumstances where parents don't necessarily want to talk about it. And then there are other circumstances where it's really important to talk about it. Lexi: And so when does disclosure come up? Can you give us some examples of when you need to make the decision as a parent as to when or not to disclose? Amanda: Often it comes up in school first, because when a child's having trouble in school or struggling or needs a little support, it's time to start talking about it with teachers so they can help you figure out what support your child needs. And sometimes it's about coaches in the community, it may come up as well. And then I think as our kids get older, they need to start thinking about if they're going to disclose or talk about this with their friends. For example, a kid who struggles with reading may want to say something before they go out to a restaurant, because reading that menu may be a little tough for them too, right? Lexi: Well, you know, we recently got a voice memo from a mom that I think so beautifully gets at how daunting this process of disclosing can be, especially when it's new. Emily: Hi. My name is Emily. I am very new to all of this. I got my son's testing back recently, and they give you this big stack of papers that's all his information. And I was absolutely paralyzed. I felt like I did not know what to do. I didn't know who to talk to, who to go to, what my next steps were. And the background on this is that I am also an educator, of almost 20 years. And I have taught kids with various learning and thinking differences and I always thought, "Well, if, you know, one of my kids ends up with an IEP or issues in the classroom, I'll be one of those great parents that, you know, takes a deep breath and knows exactly what to do. And the fact was that I didn't, because it was my child. And I was scared and nervous and alone. And I just completely shut down. And I had the reaction that I didn't want to have, which was, "This is nobody's business but ours. This is our family. This is my child. Nobody needs to know about this, and — not nobody, like teachers need to know about this, right?” But not, like, general people. And that really shocked me and surprised me that that's sort of how I felt. Amanda: So we asked all of you how disclosure has worked in your family. And one dad told us he falls solidly into the Don't Tell camp.Dad: There are times when I will tell people, obviously, like teachers or people who interact with him heavily. But it's not something that I will say to someone up front. A lot of it has to do with the social stigmas that reside around the various things like ADHD, autism and learning disabilities that people have and how they interact with the people who have them. So I want my child to be treated as any other child is. And as a result, I don't tell people up front about it. So that they don't attach those labels to him. They may choose to avoid or shun him because, you know, “I don't want to have to deal with a child that has that condition.”Lexi: So clearly, decisions around disclosure are deeply personal for both parents and for kids. Amanda: Right. And on one end of this, you've got parents like the one we just heard from. Lexi: And on the other end... Ayelet: OK, so my name's Ayelet. I have three kids. My middle one, Leia, is dyslexic. She's currently 13, and she's in eighth grade. She loves anything expressive — everything from art to dancing, speaking — anything that allows her to express herself somehow is what she enjoys. Amanda: When we spoke to Leia's mom, she was at home in Staten Island. And she and Leia were both just getting over the flu. Lexi: Leia's dyslexia wasn't diagnosed right away, though Ayelet and her husband knew something was up during the first few years of school. Ayelet: So she was able to tell me everything about school: "Oh, in science we did this, then in this class we did that and this was so cool." And she would very happily discuss whatever she was learning. So we knew she was learning, but she was failing everything. So it never occurred to me that she couldn't read. But it dawned on me one day when I came home and I saw she was attempting to do homework. I guess she was kind of -- my husband was home, and he was trying to help her with it. But what I had walked into was like a screaming match: "I just can't do it. I don't know what to do." And she's hysterical and he's, like, not yelling at her but, like, you know, that frustrated parent, like, "Just copy what I wrote down." And I'm standing there and it was like, like, a moment where all time stood still. You know, I felt like I stood there for 20 minutes and it was literally three seconds. And I said, "Oh my God, my kid can't read." Lexi: And in that moment what, like, what did that mean to you? Ayelet: I think I had a lot of thoughts at the same time. I distinctly remember saying, "How could she make it to fourth grade and nobody picked it up?" And I'm a teacher. It just, I felt so upset, angry, you know, how could I not know? Things like that. Lexi: Ayelet and her husband took Leia to get an evaluation. Ayelet: And every item that identifies dyslexia, she hit it. She hit every single one. Amanda: But this isn't a story about dyslexia. Lexi: Right. That was last episode. Amanda: This one's about how kids and their families figure out when it makes sense to share a diagnosis and when to keep it private — whether it's dyslexia or a different diagnosis. For Leia and her parents, the process of figuring that out started pretty much the minute they walked out of the doctor's office after getting the diagnosis. Ayelet: We live on Staten Island and we had taken her to Manhattan for the evaluation, for the neuropsych. Just where it was, we ended up taking an express bus. It was just easier than driving and finding parking. So we had like an hour bus ride home. So we were on the bus, and she was like, oh, you know, "I get it, but I'm really embarrassed." She's like, "Do I have to tell people?" So I told her it was up to her. I said, you know, "There's positives to being open about it, and then there's maybe negatives, too. But you have to do what feels right for you, and you may want to keep it quiet for now and then later tell people." So she got very, very quiet and didn't say anything for a few minutes. She was just kind of looking out the window. And she said, "OK, I need to think about it." And I said, "OK." Lexi: Fast-forward a few weeks. Leia hadn't said much more about the diagnosis. She was just kind of doing her own thing. Ayelet: So she had been journaling for a while I guess. She had asked me for a folder. I got her folder. She filled it with paper and she would walk around the house, like, hugging it. And she would keep it in her room, and I just didn't question it. Because, you know, kids: stickers, papers, folders, you know. But after maybe three weeks, two weeks? I don't even remember. She's like, "Guess what?" I said, "What?" She goes, "I wrote a book." I said, "You did not." She goes, "No, I wrote a book. I really did." And I said, "OK, can I see?" She's like, "No. But can you type it for me if I read it to you." And I said, "Sure." So we sat at the computer. I typed, she read. And I'm sitting there, and I'm like, "OK, wow."Amanda: In those pages Leia and her mom typed up, she had written about her experience with dyslexia, and how what she understood and how she performed in school never seemed to match up for her. Leia also wrote about what she was learning about dyslexia. And she wrote about how she could stick up for herself when her teachers didn't seem to get it. Lexi: So Ayelet printed out the pages, and then Leia pasted them into a blank notebook and added illustrations. Amanda: And those illustrations are so cool. They're cartoons about her thought process. They're cartoons about what it was like to be in school — really neat. Leia thought other kids, kids like her, might like to read the book, and she asked her parents if they could publish it. Ayelet: So we decided to just go ahead and do it and see what happens. Amanda: And that's how Dyslexic Renegade was born. Leia: I'm Leia, 9 and in the fourth grade. I wrote this book when I found out I was dyslexic, because I thought there was something wrong with me — and there isn't. I don't want other kids to think like I did. "Dys" means "difficulty" in Greek, and "lexis" means "words" in Greek. So all it really means is that one person has a hard time with anything that has to do with words. But it doesn't mean we aren't smart. Lexi: Leia's self-published book has had hundreds of downloads. She now hosts a Facebook page for kids with dyslexia that has over 10,000 followers. Ayelet: People started like emailing, messaging, calling, like on Facebook. People everywhere were like, "Oh my God, this is amazing, like, this is just like my kid!" And, you know, and we were like, "Oh wow. All right." Lexi: Hey, it's Lexi, and from time to time we're going to try something new on "In It." Starting now. The response to our show so far has been amazing. We're so grateful to you, our listeners, for the reviews you've left and the friends and the teachers you've told about our show. We love hearing that "In It" feels to so many of you like you're hearing your own family's experience described. So we want to share some of the incredible messages you've recently left us about our first episode: "Why We Cry in IEP Meetings." Caller 1: I get very emotional easily — very easily. And I can feel it coming on, and I'm always thinking, "No, don't do it, don't do it." I just can't help myself. I think a lot of the crying comes from a place of — see, I'm going to get emotional just talking about it. But anyway, I think I just get to thinking about my son and all the kind of "what ifs" and "what could have been." So sometimes that does make me a little sad. Caller 2: So at the beginning, I didn't cry at IEP meetings. But now at the end, I've been through so many that sometimes I can't help myself. Caller 3: Being an educator, I know, I know what to ask. I know what to look for. Even still, you know, I think about all the families who just go along with whatever is said in those meetings and don't ever feel like they need to question or really advocate for their kids because they really don't understand, you know, all of the lingo and all of the language and, you know, it can be intimidating even for me being an educator for, you know, over 15 years. So anyhow, it gets emotional. It sucks to feel that your kid's not being fully supported. Lexi: And one more thing: Since this episode aired, we've created a new Understood video with Dena Blizzard, the mom in Episode 1 of "In It." Dena talks more about her daughter's learning differences and the path to understanding that anxiety was at the center of many of her struggles. Check out that video at U.org/dena. That's the letter U, dot o-r-g, slash d-e-n-a. And now back to the show. Lexi: So as we've seen in Leia's case, learning how to share this thing about herself with other people happened really quickly. But Amanda, I guess I'm curious: Is that typical? Amanda: I don't know that it is typical. It's really amazing to me that Leia not only wanted to talk publicly, but she wanted to talk very publicly about it all of a sudden. Sarah: Hello. This is Sarah from Omaha. One time where we did not disclose information about my child's disability was with my middle son who was going off to college. We chose not to disclose his diagnosis as twice exceptional with ADHD and slow processing. He was able to get by in high school because of how smart he was. But once he got to college he really struggled. After failing English 101 twice, his self-esteem plummeted and we finally got him on medication and started with the disability services at his college. However, his last term as his freshman year came around, and he had an instructor who wouldn't work with his disability services that were put in place, and he ended up losing his scholarship. Had we disclosed his disability to begin with, I think that his freshman year of college would have been a completely different experience for him. Lexi: Wait. So Amanda, you send your kid off, maybe to college or to live independently or whatever, and you're still not out of the woods with disclosure stuff? Amanda: Nope. That's especially because that's the point when you're really passing the torch, if you haven't already. Because out in the world when your child's an adult, legally an adult, it's going to be up to them to figure out how and when to talk about these issues. And the question is, how do you do that? Manju Banerjee: Prepared scripts don't work very well. Lexi: Manju Banerjee is the vice president of educational research and innovation at Landmark College, a school specifically for students who learn differently. And she says going out into the world on your own brings a whole host of new challenges around disclosure. Manju: You are trying to present your best persona, if you will, to be attractive to others. And you're starting to think about life mate. You know, it's the adult stage of one's life. So at that stage, do I have to disclose? "Well, you know, I have learning differences," or "I process information slowly," or "I can take you to a date but I need more time to calculate the tip." It can be really embarrassing. Amanda: In some cases, Manju says, our kids may decide not to disclose. And we have to let them make that choice. Manju: I think one of the things we need to do and get talking about disclosure, we, as adults and educators, really need to put ourselves in the shoes of the young adult or the child and understand where that reluctance is coming from. And you can't force self-advocacy. You really need to create a safe environment where self-advocacy can be practiced organically and have successful moments. Amanda: So let me ask you a question as a parent. I can create the safe environment in my home, right? And I can create it around them. What do I do to make sure that they are ready to be in a world that may not feel as safe to them? Manju: I think as parents the hardest thing for us is to let go — is to let go that end of the rope, because we've created that safe environment at home. We know when to jump in and help out. But I think it's important for us to have that confidence, that I've built a solid foundation. And there will be occasions where my son or daughter will do things that are absolutely illogical, that make no sense, and that's doomed for failure, and just have to stand back and let that process happen, because that's how we learn. Wilson Standish: Let me just ping the group and see if I can push it back a little bit. So hold on, give me one second. Lexi: Wilson Standish has very much launched into his adulthood. He works in the advertising arm of Gimlet Media and if like me you're a podcast junkie, Gimlet probably is familiar. He spoke to us from his office between meetings. Amanda: Wilson has dyslexia, but it's not something he shares with people right off the bat, especially at work. First, he says, he needs to build a relationship. Wilson: Definitely. Yeah, yeah. Because I don't want my first impression to be "dyslexic" for some reason.Lexi: Right. So it's not like you put it at the top of your resume as “special skills.”Wilson: No, no, not at all. Lexi: That said, once he's had a chance to build up some trust, he's OK if his dyslexia comes up organically. Wilson: It usually comes before I have to do a brainstorm with a group and write on a white board. And that's when I say it, and it's only after I feel like I've earned the trust of people, so they're like, "Oh it doesn't matter, we can trust him. He's smart, he does great work." And those are the moments where I feel comfortable doing it. Lexi: And what do you say? Wilson: You know, I kind of just say, like, "Hey, I'm really dyslexic," and I just move on. And I don't really, like, dive into it, because my hope is at that point that the work that I've done and I've produced — it doesn't even matter to them, the fact that I'm dyslexic. And it only comes up at times when I'm writing emails, and I'll totally miss something that, you know, can sound really bad. Like one time, I was writing, we, you know, I used to run the Innovation Group and I was writing about a hackathon that we're trying to have with the company. So I wrote this email to like 30 people and the subject said "Hackathong." And everybody, you know, had a lot of fun with that. And it's those moments where, you know, it's embarrassing, but you — just by getting ahead of it and owning it, I've found, you know, that it's OK. And then knowing that I have to just work a little harder to make sure that I outshine those moments. Lexi: Oh Amanda, hackathong! Amanda: I know. We all make those mistakes, right? Autocorrect is our enemy at that, and we laugh. But if like Wilson you're someone with a learning difference, those moments can feel so much bigger. Lexi: Do you feel like you've been more forthcoming in your professional experiences than your personal life? Wilson: Yeah, I think so, just because, you know, in my personal life I don't really have to write in front of people or read aloud. And those are the moments that are kind of the most intimidating. It only really comes up now when I'm, you know, driving or giving directions and I mix up my left and my right. Amanda: I do that too. Wilson: Yeah. No, I don't really, you know, I don't really think about it as much. And I just, I guess, like, well I know it's present and I know I have to work through it continuously. It's something that hasn't necessarily, like, been a defining thing that I think about all the time. Lexi: Ayelet, can you tell us, what advice do you have for parents and for kids who are just starting to find their way when it comes to sharing their learning and thinking differences? Ayelet: Huh. I don't know. I think it's so different for everybody. For us it works to talk about it a lot, and often, and just put it out there because it is what it is. You know, when you talk about it, you are also teaching other people who may not be aware and people may show you their ignorant side. You have to not take it to heart. Amanda: Ayelet's right. Choosing when and who you disclose to is different for everyone. Lexi: Which reminds me: Remember Emily, that great mom who we heard from at the beginning of this episode? She was the one who was drowning under the pile of papers from her son's diagnosis. She was not sure if she wanted to tell anyone about it. So, she actually had more to say on this. Emily: So I've been taking baby steps, and I've had some really great friends help me, let me practice with them and saying, “Oh this is really helpful for him when he gets anxious, or this is a little thing that we do to help him in certain moments.” And it's felt empowering and made me feel less alone, and has helped him feel like he knows himself better. Because at the end of the day, this is really about him gaining the skills and confidence to move through the world, and I need to be there for him. Thank you so much. That’s it. Bye.Amanda: You know, as another mom who's done that, that's a big deal. Like she's not 100 percent comfortable she's ready to talk about it yet, but she's doing it for him. That's a big step. Lexi: So Amanda, I just love that Emily mentions practicing with a friend, which just seems like such a solid way of making this more comfortable for families. But I imagine that there are so many instances in which families have to make the call on the fly. And in some of those cases, do you maybe not disclose, period? Amanda: Yeah. I mean there are times — we heard from the dad in the beginning of the show who says he doesn't talk about this, and that's totally fine. There are all of these variations, right Lexi? I mean, Emily practices with a friend, but we don't know who else she's told beyond that yet. And that's totally fine. Lexi: And are there circumstances in which you still will keep this information private for your family? Amanda: I'm not telling you that. Amanda: You've been listening to "In It," a podcast from Understood for Parents. Our website is Understood.org, where you can find all sorts of free resources for people raising kids with learning and thinking differences. Lexi: We would love to hear how your family has tackled the disclosure minefield. Go to you U.org/podcast to share your thoughts and also to find free resources. That's the letter U as in Understood, dot o-r-g slash podcast. Amanda: And if you like what you heard today, please tell somebody about it. It's a way to start talking about disclosure. Share it with a friend or just a parent at your bus stop. You can also go to Apple podcasts and rate us, which is a great way to let other people know about "In It."Lexi: You can subscribe to "In It" on Apple podcasts, follow us on Spotify, or keep up with us however you listen to podcasts. Between episodes you can find Understood on Facebook, Twitter, Pinterest, and YouTube, or visit our website: U, that's a letter U, dot org.Amanda: And come back next episode where we'll be talking about why math struggles can be so much more than anxiety about messing up your times tables.Lexi: "In It" is a production of Understood for Parents. Our show is produced by Blake Eskin of Noun and Verb Rodeo, Julie Subrin, and Julia Botero. Mike Errico wrote our theme music, and Laura Kusnyer is our director of editorial content.Amanda: Thanks for listing, everyone. And thanks to those of you who sent in voicemails and voice memos. And thanks to all of you for being in it with us.
Why I finally went after my dream job after years of focusing only on my son with ADHD
One of the biggest challenges I’ve faced in my life is how to follow my own hopes and dreams while also meeting the needs of my son. He has ADHD and autism. He struggles with sensory processing issues and gets school services through an IEP.My journey started years ago, when I had moved to Los Angeles after college, hoping to work in the entertainment industry. I had some success creating and selling shows to networks as a television executive.But then I got married and started a family — and my son’s needs became clear. I eventually had to stop working in television. As the years passed, the chance to fulfill my creative dreams in California faded.In fact, since my son’s diagnosis in first grade, I’ve never been more than 15 minutes away from him during the school day. I either volunteered at his school or worked nearby from home.But all this changed earlier this year when I was offered the opportunity of a lifetime.A friend I met shortly after I moved to Los Angeles — who had become a producer — asked me to send her any television writing samples that I had. She had sold a series to Netflix.My nerves were in overdrive — I had to take this chance! I sent in one of the pilots I penned based on a book I wrote about my son’s challenges, Finding Einstein. Within weeks, I was asked to an in-person meeting with the Netflix executives. After the meeting, they offered me the job. I was ecstatic, but also frightened.The new job meant being an hour’s drive away from my kids — not just my son, who was about to start middle school, but my neurotypical daughter, too. It also meant an unpredictable schedule and a lot less interaction with our son’s IEP team. This change was going to be huge for our family.I did my best to prepare. I got my friend’s son to pick up my kids after school. I connected my son’s paraprofessional with the case manager at his new middle school so they could support each other. I created a schedule for the family. And I had my son work with a therapist to manage his transition to middle school and his feelings about my new work schedule. I happily started my new life as a television staff writer, thinking I had everything in place.But within days of starting work, my son fell and hit his head while fidgeting and leaning back in his chair. So many emotions went through my head. Guilt about being away. Resentment at being interrupted at work. Worry about being able to successfully handle both my family and my dreams.I tried to focus on what I could control. I called an emergency IEP meeting and asked for a new school paraprofessional who was better equipped to support my son. I also hired a special education consultant who helped me adjust my son’s supports more appropriately to reflect his needs as a middle-schooler. This included strategies to deal with his fidgeting in class and moving his seat from the back of the class to the front.Things calmed down a lot. With a strong support team — like the case manager at my son’s middle school — I was able to advocate for my son. My friends and husband also stepped up to take on many tasks and responsibilities.I know not everyone is fortunate enough to have the support that I have. Not everyone has the financial ability to go back to work. Achieving perfect balance as a parent while pursuing a career is impossible. But I also know it’s important to show my kids what going after your dreams looks like, whatever those dreams are.Because my son learns differently, he might be told one day that his dreams are unrealistic. People don’t always see the gifts in kids like mine. But he can see that his mother goes to a job she loves and dreamed about. It is one of the best lessons I can teach him.Read how a father’s career ambition got in the way of helping his daughter with dyslexia. And hear from parents in our Facebook community on how raising kids with learning and thinking differences affected their careers.
ADHD Aha!Twice exceptional: Raising a gifted son with ADHD (Emily’s story)
From a very young age, Emily’s son would have meltdowns and get intensely angry. He was also really bright. From a very young age, Emily Hamblin’s son would have meltdowns and get intensely angry. He was also really bright. He was ahead of the curve academically and scored in the 99th percentile on standardized testing. His teachers would say he was just “smart and quirky.” That didn’t sit right with Emily, though. She knew something else was going on.Then one day, a friend suggested that Emily look into ADHD. Emily was skeptical at first. But when she learned more, it was clear that this was the missing puzzle piece. Her son was twice exceptional: He’s gifted and he has ADHD. This discovery even helped Emily recognize ADHD symptoms in herself.Emily co-hosts a podcast called Enlightening Motherhood, which aims to help moms who are overwhelmed by their kids’ big emotions. Listen in to hear how Emily reframes ADHD symptoms in a positive light.Related resourcesThe challenges of twice-exceptional kids7 myths about twice-exceptional (2e) students Twice-exceptional Black and brown kids (The Opportunity Gap podcast episode)Episode transcriptEmily: I had a friend and I heard her talking to someone about her child's behaviors. And I kind of stopped in my track because it was the first time I heard someone describe my son's behaviors. At the time, I took it as, "Oh, he's just disrespecting me." But finally, that friend said, "You know, that sounds like impulsivity. Have you ever thought that he has ADHD? Because emotional dysregulation is also a part of ADHD." And I was like, "No, no, no. There's no way he has ADHD. He can sit down and read a book without blinking for three hours. If he had ADHD, he couldn't focus that long, right?" And I of course, I fought against it. Then I looked it up and was like, "Oh, my goodness."Laura: From the Understood Podcast Network, this is "ADHD Aha!," a podcast where people share the moment when it finally clicked that they or someone they know has ADHD. My name is Laura Key. I'm the editorial director here at Understood. And as someone who's had my own ADHD "aha" moment, I'll be your host. I'm here today with Emily Hamlin. Emily is a life coach and a mom to a son who's gifted and has ADHD. She's also the host of "Enlightening Motherhood," a podcast dedicated to empowering moms of kids with big emotions. Hi, Emily. I'm so happy to have you on the show today.Emily: I'm so excited to be here. Thank you.Laura: Let's start by telling our listeners and me about your son.Emily: I'm going to use a pen name for him just to keep his identity a little bit confidential. I'll call him Jack. Jack has always been so bright. He was the kid when he was one year old, and we brought him up to the light switches he would study which light turned on. We'd see him turn and predict which one it was and get this look of satisfaction when he got it right. And so he's always been really, really bright. And when he was in preschool —he was 3 years old — I remember he started to have some kind of really intense behaviors. He would have meltdowns and scream and just become so intensely angry. And I felt like it wasn't very normal, like the twos were actually OK. Everyone says terrible twos, but for us, it was 3 and 4 that was when the, those kind of behaviors started popping up. But I kind of felt that it wasn't super typical.And I went to his preschool teacher and I remember saying, "He's doing great academically, but we're seeing these behaviors pop up." And she would say, "Oh, no, he's just copying the other kids, throwing fits at school," or "Oh, he's just a little bit quirky because he's so bright." And in kindergarten, he was reading 100 sight words before kindergarten, and he went to school, and they would say, "OK, well, here's the letter 'A.' It makes the sound 'Ah.'" And so, he would start to act up in kindergarten. And again, the teacher would call me in and she said, "Well, let's just skip him to first grade. I think that will solve all of his behavioral issues." And I was like, "Oh, he's already the little kid in kindergarten. I don't want to have him be this tiny kid in first grade," but that's kind of what was offered.So, we tried a lot of, you know, sticker charts and what I could at the time, never really figuring out the underlying issue. And we got him through that patch. First grade, he had a really good teacher who recognized "OK, he does not need to sit and read line by line with us in this book. Here, Jack, you can bring this book to the corner. You can read at your own pace." And it was like the perfect fit that we've ever had for him for schooling, but he still told me one time, "Mom, we had to partner read on the rug in school, and the book was just so easy that I decided to lay down out on the rug and roll around and make noises instead."Laura: Oh, wow. So, is this about the time that you discovered that Jack was gifted?Emily: Yes. They tested him in school, and he tested 99th percentile gifted. And there wasn't really a gifted program, but his teacher was accommodating him as much as she could. And it was really great because the homework was the worst when he already knew how to do it beforehand. And he would come home with, "OK, write the word 'cat.'" And he was reading Harry Potter at that point in time. It was like pulling teeth to get him to do it, even though it would only take him about five minutes or so, right? But he would throw a fit for about 40 minutes over not wanting to do the homework. And I couldn't quite figure him out. At this point, I really was suspecting that he was neurodivergent and I went to Google.Laura: Dr. Google.Emily: Yeah, Dr. Google. And I thought maybe he has autism. I don't know. And I went to his teacher, and I said, "Do you think Jack has autism?" She said, "No way. He's just smart and quirky." And that was what they always would say, "No, he just has these little, like, behavioral quirks to him and he's smart, and the two combined," and it wasn't really explaining the intense emotions, which is the hardest thing for us as parents to handle. So, it was not until third grade, where I had a friend and we were at a workout group and I heard her talking to someone about her child's behaviors. And I kind of stopped in my track because it was the first time I heard someone describe my son's behaviors, where he made a little mistake on his homework, and then suddenly he ripped it up and then he was raging for like 20 minutes over this little mistake on his homework. And I stopped in my tracks, I was like, "Can we connect?"And I don't remember exactly where it went from there, but I just remember her being this support. And I would say, "No, I just, I need him to listen to me when I say 'stay off my phone' and he walks past my phone and he gets on my phone and it's like he just ignores me and he disrespects me because he gets on it anyways," I had no idea what impulsivity was or what it meant. But looking back, that's totally what was going on. He just couldn't control that impulse. Whereas at the time I took it as, "Oh, he's just disrespecting me." And the teachers would say, "Oh, he's just been bad in class," or "He won't listen to us." Nobody understood any of that underlying things.But finally, that friend said, "You know, that sounds like impulsivity. Have you ever thought that he has ADHD? Because emotional dysregulation is also a part of ADHD." And I was like, "No, no, no. There's no way he has ADHD. He can sit down and read a book without blinking for three hours. If he had ADHD, he couldn't focus that long, right? Or he couldn't sit still that long, right?" Of course, that's what I thought. What everyone says on your show, what we thought and what we know now.Laura: That's what we do here. Yeah, that's right. So, it sounds like that was the start of your ADHD journey. Maybe your ADHD "aha" moment for your son.Emily: Yeah. And I, of course I fought against it. Then I looked it up and was like, "Oh my goodness." Like it was the whole package. It's not just "He can't pay attention and he can't sit still." It had that whole package, and I went to his third-grade teacher who was really close to students and really perceptive of them, which was great, and I said, "Do you think he might have ADHD?" It was like, "Yes, please go get him evaluated."Laura: Wow. What happened then? How did the evaluation process go?Emily: We just found an ADHD clinic and she emailed us all the forms ahead of time. So, we only had one in-person visit, but filling them out, we did the NICHQ, and looking through those questions and filling them out for him, I was like, "Oh my goodness." He was marking pretty much everyone. I don't remember the exact scale, but like very often, I think is what the highest one pretty much everyone was very often. And as I was filling it out for him, I had my own "aha" moment where I went, "Oh my goodness, I'm checking all these boxes, too." And I never even considered that I could have ADHD. But suddenly it explained my own emotional dysregulation and my own tendency to just get lost in time and not realize that time had passed or procrastination, things like that. It was like a double "aha" moment.Laura: Your son is twice exceptional. Could you define that for our listeners? This is the first time we've had the opportunity to talk about twice exceptional or 2e on the show.Emily: So, he's twice exceptional in it that on the one hand, he is academically gifted, but he also has this additional neurodiverse side to him, which for him is ADHD. So, he has both going on at the same time. Getting that diagnosis was kind of difficult because it was almost like the giftedness was masking the ADHD. He was compensating with his ability to do so well in academics, but we didn't notice really what was going on.Laura: It's so tricky already to spot signs of ADHD. There's so many misconceptions about ADHD and how it presents. That's just got to add this extra layer of misconceptions or confusion.Emily: Yeah, and there's kind of a social conception, too, that children that are academically gifted should be quirky. And so, they would just describe all of those quirks as a result of his giftedness that it couldn't be something else.Laura: Because your son is academically gifted. I imagine there are all these expectations around what he's supposed to be able to do, and he's supposed to be extra mature and extra good at everything. Do you find that that's true?Emily: Yeah, and I had that for a long time, too. I would say "You're too smart to be melting down over brushing your teeth. Can't you see that brushing your teeth will take you three minutes and this fit is taking you 15 minutes? Why don't you just brush your teeth? Why can't you be logical? You're smart enough."Laura: Did you ever feel judged as a parent during this journey?Emily: I mean, definitely. I feel like most parents feel judged for their children's behaviors, and I just felt like it took so much more effort and people didn't realize that I was trying. I would get like phone calls home, "Oh, Jack did this again in class," and I would be like, "OK, I'm working on him and I'm trying." And he was doing his best too. For him, it was frustrating. There was one time he was probably five or six and a neighbor girl came over to invite him to go to the park and she knocked on the door and we answered it and she said, "Hey, Jack, want to come play at the park with me?" And her dad was with her. It was a really safe situation, but he didn't know how to handle it. So, he just like froze and he turned around 180 degrees and just let her stare at the back of his head, and he just shut off.Laura: Oh, wow.Emily: And then they're looking at me like, "So what's going on with your son?" And I'm looking at my poor son, just my heart breaking. I don't know if they were judging me, but at the time, I felt judged. I could imagine them thinking, "Why can't you teach your son social skills instead of realizing, "Oh, your son is trying so hard. He just had a hard time."Laura: From that moment to where you are now, what kinds of things helped you cope with feeling, judged, and what kinds of strategies maybe brought you and Jack closer together or things that you would say?Emily: Mindset is huge. Realizing that he wasn't just trying to be bad, or he wasn't choosing to be impulsive and he wasn't intentionally melting down, realizing that he was really doing his best. There was just a lot going on for him. That helped me out a lot. Also starting to see behavior as communication of something bigger. That was a huge deal. Like, that's probably the biggest thing that I tried to share with everyone.My website has a freebie on why is my child melting down and what's at the root of their intense emotions. And it's this five-step cheat sheet that I, I try to just get everyone to take a look at because the more that we understand that "My child is not intentionally being bad, it's not their fault. It's not my fault. They just need help developing these skills." Like, it just changed me from being upset and trying to get him to behave a certain way to being completely compassionate and trying to help him develop those skills.Laura: Wow.Emily: I say completely, but I'm still human.Laura: Yeah.Emily: I still mess up. I still go back to like, "Why are you doing this?" Pulling my hair out, OK I'm gonna pause. He's doing his best. And what is going on? instead of this like, "What is my child doing?" It's like, "Huh, what is my child doing?" Moving from judging my own child to curiosity, that's helped me, and then realizing other people might be judging me. And they might not be. And it's OK. Like I can be a good mom, even if they're judging me.Laura: A lot of what you just described is the reason that I just went back to therapy. I'm not kidding. I recently went back to therapy just to cope with like, "How am I reacting to my kids? How can I change my mindset about things that bother me, etc." I'm wondering if you could maybe call out a few of the areas where it's tricky to unravel what is a gifted type behavior versus an ADHD behavior. If it's helpful to start you off, I heard you talking about boredom. And from what I know from our experts that we work with, I know that boredom can be a big factor for gifted kids. But boredom is also something that a lot of kids with ADHD struggle with. So, talk to me about symptoms.Emily: I feel like there is a lot of crossover. I've never actually thought about separating them. For my son and for me, we don't see our ADHD as like a debilitating or a disability. We see it as a superpower. Because, and that's actually what I thought was going on. His mind was just always going so fast, and that helped him learn things really quickly and it helped him understand and it helped him come up with these ideas. But it also leads to like acting really fast and you can't wait your turn to speak. You just have to blurt out your answer right now because it's fresh on your mind and you can't wait to share it and interrupting conversations, acting without thinking. I always thought it was just the super-fast brain.But a lot of things like impulsivity is a symptom of ADHD. And I'm like, "But being spontaneous," that's what we always call it, "is really fun and it can be really creative," right? So, is that the giftedness, or is that what most people think is ADHD actually having a good spin on the same symptom?Laura: How does Jack identify? Does he use terms like 2e year or twice exceptional, gifted, ADHD, or just not a thing for him?Emily: It's not really a thing for him. Once in a while, he'll say, "Hey Mom, so I was at school..." and stop mid-sentence, and then he'll come back and say, "Is that because I have ADHD?" Like, he's asking why he just stopped mid-sentence.Laura: Wow. Good for him. I love that curiosity.Emily: And so, we approach it from like, "Yeah, it's likely and it's OK, right? And so, we were totally accepting of it in our house. And rather than, "Oh, that's what's wrong with me," we use it as, "Oh, that explains that quirk."Laura: So, let's talk about your "aha" moment, Emily. When you were going through the evaluation process with Jack, which symptoms stuck out to you? Which symptoms in particular that really spoke to you and who you are as a person?Emily: There are a lot. I think interrupting was an obvious one. When I was first married, I would interrupt my husband a lot to the point where he thought I just didn't care what he was talking about and he thought I didn't care about anything he had to say. And that wasn't it at all. I cared a lot. It was just like the thought came into my head in my mouth opened up, and I didn't realize I was doing it until he stopped me. One day he was like, "Do you realize you just interrupted me like five times in this conversation? You didn't let me finish my sentence." And I stopped and was like, "Oh, really? And why am I doing that?" I was like, "Oh, OK. Well, that's one of my quirks."When I was younger, I did really well in school, but in college, for example, I thought everybody had the same struggles I did with sitting down and reading a textbook. I had to go to the gym to read a textbook. I had to get on a treadmill and walk or ride a bike, or I had to find an empty classroom and stand at a podium and read it out loud or pace around the classroom while reading it out loud, just to get myself to focus on it. So, I did really well in school, and I thought everyone had those struggles. And I honestly, I was graduated, and I was dating my husband, who was still in school, and we sat down — I sat down to grade papers. I was a teacher at the time — and he just put out this super boring history textbook and he sat there, and he read it, and he was turning pages. And I said, "Are you actually like paying attention to that?" He was like, "Yeah." I'm like, "No, like, you didn't have to go back and reread that first page six times?" And he was like, "No, I'm just reading it and paying attention."Laura: Oh my God. It boggles the mind. I mean, for sure I can't. I see people do that too, and I'm like, "What are you doing? Aren't you like, how are you just not moving around?"Emily: Yeah, he wasn't like twitching in his leg or like flipping a highlighter lit or like anything that I do to cope. And I was in my early twenties and was like, "Wait, that's possible? I really thought everyone struggled to read something boring like that."Laura: What about impulsivity? You mentioned that Jack has struggled with some impulsivity or some spontaneity. He has the luxury of being spontaneous. What about you?Emily: Oh, yeah. I'm a teacher and a mom, and it makes for a really fun teacher role. I'll just be sitting with the kids and be like, "You know what, kids? Let's go on a turkey hunt." And we had nothing to do with the lesson plan, but I just looked at the kids and they were fidgeting and the idea pops in my head and suddenly we're acting out a turkey hunt in the classroom and it's so much fun. But I do have to temper it because we want to be wise with that.It's easier as an adult. I think as a child, when my upper brain wasn't fully developed, it was my classic example. I was five or six and I was at my grandma's house visiting her. She had this beautiful — it was probably a handmade doily — on one of her end tables, and there was someone had set a pair of scissors on it. You already know what happened.Laura: Oh, my God.Emily: I didn't even think, I was just like, "I wonder what it's like to cut through that doily." And so, I picked up the scissors and I just cut right through. I don't even know if I cut through it. I just remember cutting it and feeling I was just curious to know the texture of when the scissors went through it. I honestly wasn't trying to be bad. I didn't even think it through. I was just like, "I wonder what it's like to cut through that doily." And I try to remind myself of that when my kids do things that I'm like, "What in the world are you doing?" And like, they probably weren't thinking. They probably just had a thought pop into their head, and they acted on it.Laura: Oh, my gosh. Emily, this is reminding me of something. When I was a kid, I remember that I didn't feel like I had enough shelves in my room, so I just went in, got some shoeboxes and some super glue, and I glued them up to the wall. And they were obviously, they were not perfectly straight either, so they were tilted, so the shelves didn't really work, but I just super glued a bunch of shoeboxes to the wall, and I was like, "Why are Mom and Dad so mad?"Emily: I think that's incredibly creative, which I feel like people with ADHD are incredibly creative. We have these out-of-the-box thoughts who would think to go and grab shoeboxes and super glue it into the wall? Like we could say that negatively, like “Who would ever think to do this?" But we can also think, "Oh my goodness, that is brilliant." You saw a need in your room and you just went for it and you totally thought of a solution that nobody else would have thought of. That's incredible.Laura: Thank you, Emily. And that's very, that's very validating. I appreciate it. Can you call my parents after we record?Laura: Has your son getting diagnosed with ADHD and now you knowing that you have ADHD, has that created a unique bond in any way? Is that brought you closer together? It sounds like you've always been close, but just curious.Emily: Yeah, it's helped me be a lot more empathetic, like where I realized, "Well, I wasn't trying to interrupt my husband," and when he interrupts me, I'm like, "He's not trying to do this. It just kind of that that in his head, in his mouth opened up."Laura: Right.Emily: I'll say something like, "This is our superpower." And his little brother was recently diagnosed with ADHD also. And I'm a little bit suspicious that the third one might have it, but he's not quite old enough yet for us to get him evaluated. And so, yeah, I just, my poor neurotypical husband, he never understands why we're like so creative and so spontaneous and just...Laura: I bet he loves it. That's got to be really exciting, right?Emily: He does, I mean, he married me for a reason, right?Laura: That's a lot of spice of life that you're going to have that you already have in your house.Emily: It is.Laura: You're like "It is, I'm tired."Emily: It's fun. It's fun. I really, I mean, I wouldn't want my kids any other way, but it is a lot of work. Yeah, it really the hardest has been the emotional dysregulation part of it that I had to learn to temper myself. I would just flip a switch and get angry so fast when they were doing something that I thought that they shouldn't and learning to catch myself before I get to that ten.Laura: That is so hard. I find that to be the most difficult thing about parenting. You know, I'll be fine, fine, fine, fine, fine, being a quote-unquote model mom, and I'm just I'm responding calmly to things and gently nudging and teachable moments. And then I just get to this point and I'm just like, "Just go to bed," and I just want to lose it. I'm like, "You got to get out of here. I can't answer this question again." And the way I just said it, it's putting it mildly. So, I feel you and I'm working on it. It's a journey.Emily: We're all working on. It sounds like you're human. Isn't that great?Laura: Thank you.Emily: And we were talking about like ADHD being a superpower. A lot of things list oversharing as a part of ADHD, and I was a little bit mind blown when I read that because I was like, "I've always called it being authentic." And I realized a lot of my really close friends also have ADHD, and a lot of us didn't know until we were in adulthood. And I realized like I was being authentic, they were being authentic.Maybe people were a little bit weirded out because they called it oversharing, but we connected with each other and just felt like we were totally open. And when people come to know me, they know the real me. I can't hide it very well. It's just who I am. And so that it's another spin on "Sure, you might be able to call it oversharing," but for me, I'm like, "I'm just telling it how it is, and now you know who I really am."Laura: You are so good at spinning this. So, I'm going to run down what I've heard so far, and then I may ask for more. So, oversharing, reframing that as authentic. Impulsive, reframing that as spontaneous. Can I try out a few more on you and see what you come back with?Emily: Sure, let's.Laura: Hyperactivity. Hyperactive.Emily: Energetic.Laura: Yeah. Distracted.Emily: Overly attentive.Laura: Oh, this is great. You're so good at this. Let me think. How about disorganized?Emily: I'm still struggling with that one.Laura: Creative.Emily: Human.Laura: Human, there you go. Forgetful.Emily: Oh, learning to use tools. Using a phone alarm all day long.Laura: Got it. Oh, my gosh, procrastinating.Emily: Oh, yeah. You're hitting some of my pain points right now.Laura: Sorry.Emily: Yeah, I don't have a creative spin on that one.Laura: So, you've learned to flip the ones that are primarily maybe your kid's symptoms, but tougher when it's things that are more about us.Emily: Well, yeah, I think just learning to flip the ones that I really do see as being able to be helpful. I can't, procrastinating is just one of those hard things we have to learn to find ways to deal with it, I guess.Laura: That was really good. I'm really impressed with your ability to do that. It's just like you really, your mindset is really lovely.Emily: Thank you.Laura: What's one or two things that you wish more people understood about ADHD?Emily: I think the biggest thing is that people with ADHD are really doing their best, that we're not interrupting you because we don't care about you. I guess that's the biggest one. People with ADHD are doing their best and that might look different than someone's best that doesn't have ADHD, but it doesn't mean that the efforts are not there still. And in fact, many times we're trying two or three times as much to do the same thing.Laura: Tell our listeners about your podcast.Emily: As you said, it's called "Enlightening Motherhood," and our goal is to help moms who are feeling overwhelmed with their children's big emotions, which often lead to big behaviors, too. And it's meant to help empower them so that we can turn that overwhelm to confidence so that they can confidently parent their children. It starts with us with our mindsets, with being able to handle those difficulties, and then we learn a lot of tools that we can apply to parenting.Laura: Emily, it's been so great to talk with you today. Thank you so much for doing this and just for your candor.Emily: Thank you. Thank you so much for having me. And I love the work you're doing with this podcast and with Understood. I love to follow you on Instagram and just the compassion that you have for not only people that are neurodivergent, but also trying to get the information out there in the world so that we can all understand each other a little bit more. I just love your mission and what you're standing for.Laura: Oh, thank you so much. You've been listening to "ADHD Aha!" from the Understood Podcast Network. If you want to share your own "aha" moment, email us at ADHDAha@understood.org. I'd love to hear from you.If you want to learn more about the topics we covered today, check out the show notes for this episode. We include more resources as well as links to anything we mentioned in the episode. Understood is a nonprofit organization dedicated to helping people who learn and think differently discover their potential and thrive. We have no affiliation with pharmaceutical companies. Learn more at Understood.org/mission. "ADHD Aha!" is produced by Jessamine Molli. Say hi, Jessamine!Jessamine: Hi everyone.Laura: Briana Berry is our production director. Our theme music was written by Justin D. Wright, who also mixes the show. For the Understood Podcast Network, Scott Cocchiere is our creative director, Seth Melnick is our executive producer, and I'm your host, Laura Key. Thanks so much for listening.
Why I’m torn about letting my son with ADHD play video games like Fortnite
I didn’t know what to do when our 8-year-old son came to me in tears and said he was having trouble playing with the other neighborhood boys. Our son has ADHD and autism. He’s unusually sociable and friendly, and he’s rarely had trouble before, so I was a bit puzzled. After I asked for a few details, he told me all of the other boys play a video game called Fortnite.Our son doesn’t play Fortnite. But even when he and the other kids are outside playing with their Nerf guns, it’s all about Fortnite, and he’s quickly “eliminated” from their game because he has no idea what’s going on.He told me he feels left out. He wonders why he’s different from the other boys.My heart sank. Here is my sweet and sensitive son, who’s outgoing and well-liked, feeling left behind and excluded from something he feels is “normal” for kids his age. I wondered how this video game could have such a social impact on this little kid.I didn’t know that much about Fortnite, so I set out to do some research. I discovered it’s a free-to-play, first-person-shooter game that runs on multiple platforms. It’s cartoon-like and far less violent than other shooter games. It’s marketed to a younger audience than games like Call of Duty, which are realistic and bloody. Common Sense Media recommends that kids be 13 and over to play Fortnite.Still, despite the cartoony feel and lack of gore, my wife and I agreed we wouldn’t let our son play it. We have a number of concerns around video games in general, and many of them apply to Fortnite.Because of his ADHD and autism, our son frequently gets hyperfocused when playing video games. He has a very hard time getting himself out of “game mode” and back to other non-electronic activities. He thinks about the game and wants to talk about it long after game time is over. We try hard to get him to come back to a topic of more general interest, but it’s difficult for him.I also worry that the violence in Fortnite, while fairly tame graphically, might be confusing for him. He takes things very literally, more so than other kids his age. While Fortnite is not bloody, I cringe a little when I hear the boys talk about their favorite shotgun, rifle, or how many head shots they made yesterday. It’s just not what 8-year-olds should be thinking about, in my opinion.I’m concerned about him getting the idea that violence in the real world looks like it does in Fortnite. With mass shootings and school shootings being an unfortunate reality these days, I don’t want him to think that everything will be OK if something like that happens, like in a game. That’s why his literal thinking sometimes worries me sick.Online games like Fortnite have an open chat function as well. All the neighborhood kids use the open chat when they play. They encourage our son to get online so he can chat with them, too.Our son is sometimes overly social and will talk to and overshare with people he doesn’t know. Even though we’ve had many conversations with him about stranger safety, I still worry that older kids or adults would talk him into potentially dangerous situations.We do let him play some video games, like Mario Kart, but we limit the type and amount of game time. And we don’t allow games with a chat function or that allow information sharing with others. (I don’t have a problem with our son joining an online race in Mario Kart. But I do have significant concerns with him playing a game where other players can type in anything they want and can hide their age and location behind a username.)My wife and I asked friends and co-workers for advice, and we got some great ideas. One was to find some Fortnite videos online to watch as a family. This can help our son understand the basics and lingo of the game so he can join imaginary play with his friends.One thing I do like about Fortnite is that players can celebrate victories through short dances. The kids seem to love these and do them for each other while they play. Our son is learning the dances from his friends without having to play the game. A friend also gave us a link to a YouTube video (shown below) that features all the dances from the game without the gameplay.Oddly, our son hasn’t actually asked us if he can play Fortnite. He’s not particularly interested in that kind of game. He just wants to fit in with his friends and be included. He just wants to feel like he can join the conversation and have fun with them in their imaginary battles.That’s all I want for him, too.Learn more about how multiplayer video games can be challenging for kids with social skills issues. And download an infographic with tips on kids with ADHD and screen time.
The Opportunity GapPreparing kids for life after high school
How can high-schoolers and their families prepare for life after high school? Get advice and tips from a college advisor. For kids with learning and thinking differences, preparing for life after high school often brings up many emotions and questions. “What’s next for me?” “Will I have the same accommodations?” “Will I be successful in my studies?” In this episode, Julian talks with Sudi Shayesteh. Sudi is the director of the Office of AccessABILITY at Hunter College. Learn about the challenges students who learn and think differently face when transitioning out of high school. And get tips on how to team up with the school to better prepare students for this transition.Related resourcesAfter high school: Different ways to thrive 7 things to know about college disability services Life after high school: Tips to get your child readyEpisode transcriptJulian: From the Understood Podcast Network, this is "The Opportunity Gap." Kids of color who have ADHD and other common learning differences often face a double stigma. And there's a lot that families can do to address the opportunity gap in our communities. This podcast explains key issues and offers tips to help you advocate for your child. My name is Julian Saavedra. I'm a father of two and an assistant principal in Philadelphia, where I've spent nearly 20 years working in public schools. I'll be your host. Welcome to Season 3. On today's episode, we're exploring the unique journeys kids with learning and thinking differences face when transitioning from special education to higher education or education beyond high school. So many students will leave high school, and they don't really know about all the resources that are available to them at the college level. So, we're going to talk about some of the challenges that students commonly face when making that transition. I am really excited to welcome Sudi Shayesteh. Sudi is the director of the Office of AccessABILITY at Hunter College in New York. She brings a wealth of knowledge and over 20 years of experience in higher education and disability services. Sudi: Good to be here. I'm so happy to be here. I'm looking forward to our conversation. Julian: Awesome, awesome, awesome. So, Sudi, this is something like really near and dear to me. And so, I'd love for you to just to start us off by telling us, why do you do this work? How did you get into the work you do in disability services? Sudi: Well, I am by license and training, a school psychologist, Julian. And for my post-grad degree, I did some studies and certification degrees for bilingual, working with bilingual students with disabilities. And eventually, I landed a job at New York City College of Technology. That's where I was doing some internships, and they called me and offered me a job as a learning disability specialist. Now, seven years later, I landed this position as the Director of Office of AccessABILITY at Hunter College, and I haven't left since then, which was 2005. I love working with college students. I love working with college students with different type of disabilities. I started with learning disability and then, through job I learned that it doesn't end there. Disabilities are sort of, interconnected. One disability results in another one and becomes secondary, tertiary to another form of disability. So, it's all sort of interconnected. And that sort of inspired me to continue with the work. And when I was at City Tech — New York City College of Technology — that's where I did most of my work with the transitional trainings and collaborating with high schools, working with high school junior and senior students, coming and visiting the college and answering questions and providing training, so forth and so on. So, it's been kind of constant movement, constant growth, constant learning, while I'm also trying to help families and students with disabilities. Julian: Wow. You have a pretty packed career so far. You've done a lot of things, and especially at the higher education level. Being at Hunter for so long and being in this role, education has transitioned a lot in the time that you started to where we are at now. Can you talk to us a little bit about how your specific field has evolved since you started? Sudi: Sure. Well, yes, you're right. I started this in 98, and I can say with confidence that when I started, the focus wasn't on transitional training then. And even when the K to 12 towards high school — let's say high school administration — the IEPs were only created during the last year of the students' high school transition. And there wasn't much time to get to know these students, what their abilities, what are their disabilities, what are their likes and dislikes. Nowadays, the IEPs are created as early as kindergarten now. As soon as someone is identified as having a disability — as soon as a child is identified as having some sort of a difficulty, or identified as neurodiverse, or having a developmental, psychological, any kind of a disability — the parents get involved, the administration gets involved, the guidance counselors, the specialists get involved, and from the get-go, they sit together and decide what is the next best step. So, this is a huge step forward towards understanding that the identifying disability and sort of troubleshooting or addressing the needs of students with disabilities is not going to be all done in one year towards the graduation. This is a continual work. This is something that parents and administration have to work on it from the get-go. So, they get their students ready by the time they hit high school years, and hopefully by then they're ready to move on to the next level and transition even, whether it's into higher education or a job or some sort of career. So, there is a big change that I can see it has happened since. I can also see that the assistive technology has been integrated into teaching the students in the classrooms. Assistive technology, it was very much limited those days. Tape recorders, considered as assistive technology. Now we have all these kind of assistive softwares and hardwares for visually impaired, learning disabled, hard of hearing students. Name it and they're all incorporated into the classroom learning and outside the classroom environment. So, these are all the, a lot of big changes that have happened. Julian: I really want to hone in on the idea of transitions. For those of you listening that have children or students with learning and thinking differences, you might hear the phrase "transition planning." You'll find that in the body of an IEP or in the process of writing an IEP. And as somebody, again, who is an administrator at the high school level, I get to see transition planning on both ends: when middle school students are doing transition planning into high school and then as we're planning for transitions out of high school, we really sit down as a team. And like you said, the family, the student, the teachers, the administrators, the whole team kind of forecasts or plans out, what does that transition going to look like? And a lot of times we find that transition planning starts at the very beginning of the process. So, we're looking further down the road and we might be looking three, four, or five years down the road, as to what things look like, like this backwards planning transition period. So, I'd love to kick the further part of the conversation off with just defining, what are these transitions we're talking about and what can they look like? Sudi: There are transitions from high school to college, there are transitions from high school to career and then there are transitions to from high school to further trainings. So, there are different type of transitions that are out there. But each group of students needs a certain level of training and readiness before they hit that plateau, if that makes sense. Now, so, for instance, for students who are just transitioning to higher education, these students, they need to know what they're facing by going to college. They need to know that there's a huge difference, there's a gap between the way higher education approaches learning and the way that high schools do. The way the classroom is structured, the way the hours are structured, the way that the guidance counselors and parents are involved in high school versus the level of their involvement, if any, in higher education. Then there's a whole lot of transitional issues in terms of lack of socialization skills. Is throwing someone from a pond into an ocean, sort of the example I usually give, for students that are not familiar with college and college atmosphere and challenges. It's really throwing someone into the ocean and telling them "Learn to swim." So, there is a big transitional issue, so what's going to happen to them? There's a great deal of training, a great deal of conversation, communication and exploring the options for that particular student. And I always say, involve them in the conversation, have a talk with them, see what are their thoughts. What is it that they think they cannot do versus where is it that they think they can do or they're interested to do before you make any decisions. And then, look into the resources and sources they're out there to see if there are any companies, agencies, any sort of sites that they would provide some sort of a training. We are talking also about cultural differences. The cultural differences among students that are visually impaired, the blind, might be very different from cultural differences among students who are deaf and hard of hearing versus cultural differences among the students with autism, right? In the spectrum. Julian: And that's the truth, right? And you mentioned earlier how some disabilities may intersect with other disabilities. And when you were talking about the cultural differences — depending on what disability or learning difference the student may have — it made me think there's another layer too, with cultural differences based on race or gender or nationality, ethnicity, and how those also play a part in what that transition may look like. Now, you also mentioned how this is not just about higher education, right? Like, we know that the majority of students across the nation do not attend higher education. Like there's other options that our students go into. And I'm speaking specifically around trade schools. I'm speaking about military or even the world of work. What does it look like for students who are not college-bound? All right, so say I'm a student who has an IEP and I'm choosing to enroll in trade school. Or maybe I have a 504 plan, and I've enlisted in the army. Are there resources available for them to prepare for their journey, too? Sudi: Definitely. There are a lot of resources citywide. I mean, there are programs that focus on helping the student to equip them with practical skills, certifications, job placements. Or for example, schools might collaborate with local businesses or trade schools to offer vocational training and courses in fields such as, let's say, carpentry, automotive repair, or culinary arts. Just give the students some sort of a hands-on experience and give them some sort of industry certification, which is very empowering when you think of it. Is very empowering, is right in the, you know, where it should be. And so, the emphasis is on preparing business students through internship, apprenticeship, community-based programs that aligned with their employment or post-high school plans. And there are tons of programs across the city that help students with that. There's CUNY Career Success, there's Myfuture.com, there is New York City College Line, there's New York State Career Zone. There are a whole lot of platforms out there when you check the online, that their main goal is to help students make appropriate decisions as to where they want to be in future, what is their career path. Whether it's through sorting out online evaluations to find out their skills and aptitudes and abilities and interests and all them, and then then match them to the next best thing that might be available there for them. So, there's a whole lot of resources there. And, I can talk about Understood.org, right Julian? A whole lot of information out there on your website. I was checking it and I was just, "Wow!" Presenters, the wealth of information, the links, the workshops that you offer in terms of time management and organization and studying skills. All these are tailored towards different learning styles, different learning disabilities, abilities, and so forth and so on. Then, there is the LDA, Learning Disability Association of America, a huge organization. I've been familiar with them for years and years. There's Landmark College, which is a college for learning disability students, and they actually offer workshops, trainings and for event professionals that are already in the field. Then there's LD Online. So, there's a whole lot of resources out there. When you go out there and check, "How am I going to help my son or daughter transition with certain type of disabilities?" Julian: Listeners, I hope you are all taking copious notes because Sudi just dropped some gems. She gave an entire list. Don't worry, if you weren't taking notes we will link all of the things that she mentioned in our show notes. Really quick expert tip for our listeners: When you're in the midst of an IEP meeting, you should definitely ask for career exploration. What is career exploration look like for your child? And that can be as early as fifth or sixth grade and as late as 12th grade. But definitely ask for career exploration and opportunities for career exploration to be written into the IEP. Because that's going to really encourage the idea of exposure. Everything that Sudi was mentioning, relates to the idea of exposure. Our students need to be exposed to all the different options they have out there, and this is going to help the transition process because it gives your child agency, so they can have a part in figuring out what is it that they want to do. It's not just about what you want for them, it's about what they want for themselves. One of the proud parts of the school I'm blessed to serve, is that I am able to help students have career exposures to a variety of careers throughout the city of Philadelphia. And we're able to send our students out to different internships, and they are able to earn industry certifications. So, many students can graduate with the certification in a career of their choice. And if they choose to go to college, they can do that. If they choose to go to work, we hope that they prepare them for that too. But the key is exposing them. And so, I'm wondering as we're thinking about this idea of exposure and transition, what's another challenge you see as students are transitioning into a college space? Sudi: The first year is extremely difficult for students that they feel like an outsider, that they don't belong there because they don't know enough about college environment. And the reasons was that — with or without a disability — was what we talked earlier about, lack of familiarity with the college environment. And it wasn't so much about the students' ability to study and learn. It was a lot about the students' lack of information about the differences between college and high school, and the differences that we talked about also about the whole structure. So, we see that a lot. We see that. So, a lot of campuses like Hunter, we have a hub for students. We have a center where students can actually come hang out while working on their homework assignments or taking exams, but meeting other students, collaborating with other students. We also have transitional, not transitional, but mentoring programs. Where there is one-on-one mentoring using graduate students, whether is a mentoring program for students on the spectrum. But actually having someone that is more senior to them, sit with them, talk with them, show them the loops, and tell them, "Don't worry, we were where you are right now, but you gonna learn it." But, get their minds ready before they get there. That these are the things we need to do. Proactivity in that term is very important. Julian: So, Sudi, I want to ask a real-life scenario question. Let's say that my daughter is graduating high school with the class of 2024, and she has decided that she is going to matriculate at Hunter College. And let's say my daughter has a current IEP in 12th grade, and the IEP has support services for ADHD. Let's just use that for examples. What does it look like for the time that she leaves high school until August of 2024, when she packs her bags and shows up at one of your beautiful dormitories? What kind of support services would happen while she's still in high school? What would happen during her first year? Like, what is that going to look like? What can I expect as a parent in terms of support services? Sudi: So, I would definitely have their guidance counselor or other counselors, to have their IEP, 504 and Psychoeducation evaluations ready. Hand it to them and tell them how important it is that these documentations to be shared to the Office of Disability Services once they get to college. That's very important. Sometimes students come in and register with our offices, and we have to send them back to collect certain documentations. They don't even know what those documentations are. They don't know which office has them. They don't even know some, some of the students don't even know what kind of disabilities, you know, they were diagnosed with. A lot of them coming into our offices when they come in from high school, they come in blank, completely. Not knowledgeable about what's going on with them or what's written in their documentations. It's very important that they get familiar with their documentations, their disabilities, and why they need these accommodations. That's very important. And telling them that, yes, this is yours. Put it in your bag, save it somewhere in your bedroom. So, the day you go to college, the first stop you make after you get accepted to that college. Take a copy of this to the Office of Disability and meet with someone and discuss what is available to you. So, that's step one. Julian: Got it. So, find the Office of Disability at whatever college you're attending, and bring copies of your IEP and any other evaluative work with you so that they can have that on file. Sudi: And then, as soon as you — some offices are larger than others — but I'm sure someone is going to be assigned as advisor or a counselor, and have a conversation. Participate in student clubs, participate if they have any time management, study skills workshops. I would say, take advantage of any kind of a workshop there are out there that get you familiar with what college life is about. You know, go to orientation meetings, go to welcome meetings. And anything that the college has set up for freshmen students entering the college. A lot of times the students miss these orientation activities and later on — or they don't even know who their academic advisors are — so they have to get somewhere or they have to go meet the advising office, meet the Office of Disability Services and all that. It's not just about taking classes and passing the courses, is really about also getting to learn about the resources that are available on campus. And go into those offices and get familiar and get to meet someone and have a conversation. Julian: Got it, got it. Now that, you know, my hypothetical daughter — which, by the way, my daughter's only eight years old, so I have a long way off for this — but let's think my hypothetical daughter is there. She has gotten to know her mentor at the Office of Disability Services. She's thriving, but one of her friends also has an IEP, and one of her friends might be struggling. What kind of programs or resources do you know of that our listeners can really rely on to be effective? Sudi: Well, their best resource while on campus is the Office of Disability Services. Because they do workshops and trainings. They do one-on-one, they do group. They do actually sit down with the student and explore the documentations and go through what is doable, what is not, in terms of their skills and abilities, and interests. But yes, there are these organizations out there that I mentioned to you like Myfuture.com or New York City College Line. They can go and have a private mentor or private, you know, advisor or hire even someone to consult with. But when in college, the best the student can do is take advantage of the accommodation provided, and when they can, have a conversation. Julian: Got it. So, listeners, Office of Disability Services. They should be at any higher education institute that you are choosing to attend. All right, Sudi, last question. Just thinking about this entire conversation we're having about the idea of transitioning into higher education. And you shared a wealth of resources. You shared some very clear steps for families to take. Is there anything that you can think of that educators or parents or students or all three together can work together to ensure that adequate support systems are in place for students with disabilities. Sudi: The first thing I would say, let's respect our difference. Julian: Yeah, that's a word. Respect our differences. Yeah. Sudi: And the second is, collaborate. Communicate, collaborate. During the collaboration process, involve the student in the conversation. Don't make just decisions without the student sitting there. And you might think you know them better than them, but you don't. They know exactly who they are, what they can and cannot do. One thing we do when we sit with a student or have a conversation with them we'll say, "Tell me about what is it that you feel like you cannot do in the class? Explain to me what happens when you try to listen. Explain to me when you're trying to listen and take notes. Explain to me what happens when you are taking exams." They know. Maybe they cannot verbalize it the way we want to, but they know exactly what's happening to them. Then with that information, you can work. You can understand how this disability is hitting the student and how you can be helpful to them. So, clear communication, having a clear communication channel, involve the student in this planning transition planning, and leave the channel for future communications and dialog open with the educators, with parents, with the students. Just making sure that everyone understands the students' needs. And, that this whole collaboration process empowers everybody. Empowers the students, empowers educators, the parents, and, it's like a joint advocacy process for the student. And no one would benefit more than the student, of course. And I think during this process, everyone learned so much from each other. I mean, the family learns from educators, the educators learn from specialists, the specialists learn from the family. So, the student learns from all of them. So, this collaboration is really big. Julian: Sorry, I can't thank you enough. You know, this being your first podcast experience, I think you were made for this. You have such a soothing voice, and you might want to consider getting one started at Hunter College. To our listeners out there, if you have a high school student that's looking for a college experience, I would strongly advocate you take a look at Hunter, because Sudi will definitely take care of you. And the Office of Disabilities across colleges around the country are doing great work. And the key is that, if you have a child that is interested in going to college, you can go. They should go and there will be support there when they get there. So, do not think that having a disability or having a learning and thinking difference should bar you or prohibit you from going to college. You're going to do just fine. Before we go, I do have some resources from Understood to share: "After high school: Different ways to thrive." It's an article by the amazing Understood team. And "7 things to know about college disability services." Another article that you can find on Understood.org. Sudi, thank you again so much. I really appreciate you. Sudi: Thank you so much Julian for this opportunity. I really enjoyed this time. And I feel like that there was a lot to share, I understand. But one thing that I would really encourage everyone to do is ask questions, ask questions, ask questions. Don't take no for an answer. Don't just go for they say, "Well, he cannot do it. He should not do it or whatever they might say." Even in college, you can ask why. You can ask why. You can say, "OK, I understand. What is the next best option because I don't want to just leave it at that. So, what is the best I can do after this point on? Are there any vocational trainings if someone cannot make it in college?" Don't just shut it off. So, this conversation, this collaboration, this helping the student to get to know themselves, their skills, their abilities, their aptitudes. It's so important to have these realistic conversations. The family, and especially as advocates together and educate the student about themselves and what they can and what they cannot do, and how their disability affects their learning, so they can maximize on the services that are available for them out there. Julian: You heard it first, listeners. Have the conversation, have the communication to maximize the opportunity. Sudi, we appreciate you. Until next time listeners, thank you so much. "The Opportunity Gap" is produced by Tara Drinks, edited by Cin Pim. Ilana Millner is our production director. Our theme music was written by Justin D. Wright, who also mixes the show for the Understood Podcast Network. Laura Key is our editorial director, Scott Cocchiere is our creative director, and Seth Melnick is our executive producer. Thanks for listening and see you next time.
Understood Explains Season 1Getting reevaluated for special education
How often do kids need to be reevaluated? Find out what to do about losing IEP services and how reevaluations can help teens get ready for college. How often do kids need to be reevaluated for special education? What are schools looking for when they assess students who already have an IEP? This episode of Understood Explains covers the basics and key details, like why this process is extra important for high-schoolers who may want to go to college.Host Dr. Andy Kahn is a psychologist who has spent nearly 20 years evaluating kids for public and private schools. His first guest on this episode is special education teacher Kate Garcia. They’ll explain:What reevaluations look like How often they happen and whyWhat to expect after a reevaluation Andy’s second guest, Amanda Morin, will share tips to help kids and families get ready for a reevaluation. Worried that the school might cut your child’s services? Get advice on how to avoid passing those feelings on to your child.Related resourcesWhat is a reevaluation for special education?What to do if your child is losing IEP servicesEvaluation rights: What you need to knowEpisode transcriptHaizel: Hi, my name is Haizel. I'm in the Bronx, New York. I've had multiple kids that have had an IEP and my focus today is on Sayeira, who still has an IEP as a junior in high school. Sayeira has been evaluated or reevaluated by the school district several times. And I believe that at least twice was at my request. Even though she's expected to be reevaluated every three years, I did use my parental rights to have her evaluated sooner than that because I felt that one, her needs were not being met. And two, I just felt like something was missing. So I believe in total since she started in kindergarten, she has been reevaluated five times within the school district and once externally.Andy: From the Understood Podcast Network, this is "Understood Explains." You're listening to Season 1, where we explain evaluations for special education. Over 10 episodes, we cover the ins and outs of the process that school districts use to evaluate children for special education services. My name is Andy Kahn, and I'm a licensed psychologist and an in-house expert at Understood.org. I've spent nearly 20 years evaluating kids for both public and private schools. I'll be your host.Today's episode is all about reevaluations. We're going to cover a few key things: what reevaluations look like, how often they happen and why, and what to expect after reevaluation. We're also going to share some tips to help kids and families get ready for a reevaluation, including what to say to your child about getting reevaluated — and what not to say. But first, let's hear more of Haizel's story.Haizel: When I requested the reeval, I was sent a letter to the school. I did send an email directly to the person that I knew would be responsible in the team. And I would specify my reason for wanting to have her reevaluated so that they can look at those areas. One of the areas I had concerns with was her memory because she would learn something and not be able to retain the information. So I'm like "Can you please look at her memory?" I would look up the information or get the information and try to focus my letter on what I wanted them to consider so that there was no question as to why I'm writing the letter.Andy: What Haizel was just describing is an important evaluation right that many families don't know about — that you can ask the school to reevaluate your child at any time and for any reason. Another thing that parents need to know is that by law, kids with IEPs, or Individualized Education Programs, need to be reevaluated at least once every three years to see if their needs have changed. Over the years, I've worked with a lot of families who are nervous about the reevaluation process. I've often heard things like, "Man, the first evaluation was so stressful. Why is the school putting my child through this again?" Or "My child is older now and more sensitive being seen as different. I don't want the reevaluation to hurt my child's self-esteem or make them feel bad about themselves." And some families are really concerned that the school is just doing an evaluation to take away their child services. While these are all valid concerns, and really everyday concerns that family share with me, my hope is that my first guest today is going to help me address all this. Kate Garcia is a special education teacher at a high school near Philadelphia. She's also a special education case manager, which means she's a part of a lot of evaluation and reevaluation teams. And she's also an Understood Teacher Fellow. Kate, welcome to the show. Thanks so much for being here. Kate: Hi, Andy. Thank you so much for having me. Andy: So today I'd really like to first talk about like the purpose of reevaluations. How do you explain to your students and their families why a school wants to do a reevaluation? Kate: Right. So the purpose of a reevaluation is to determine first whether additional information is needed to see if a student continues to have a disability requiring specially designed instruction, which are things that teachers are doing in the classroom to support students. And to see if any related services are necessary to add or take away from the supports. We also want to see if the nature and extent of the special education and related services have to be altered or changed, and if potentially the student is qualifying under a different disability category.Andy: So talk to me about related services. What does that mean for families who might not know what that means? Kate: Sure. So related services are things like speech and language. It could also be occupational therapy, physical therapy. So if your student is showing signs of handwriting difficulty, and you want to have an occupational therapist come and evaluate that student, that would be part of the related services portion on a reevaluation,Andy: OK. So big picture, we're thinking about everything that's in the student's IEP, and we're looking for any changes in how the student is functioning. Basically, we're looking for what's different in this evaluation compared to the previous one. And hopefully what we're seeing is progress. But as kids get older, sometimes new challenges may emerge that need to be addressed in the IEP. Give me some examples of what kinds of things might be added as a result of a reevaluation,Kate: We're looking for any additional needs, such as maybe counseling services. We can also look at additional supports that teachers can put into place every day in the classroom. So we look at things like would preferential seating — is that working in certain classrooms that is not being implemented in others? So we kind of take a cross-section. We're getting input from all of those teachers, and of course, the family and the student. And we can piece together what's working here, what's working there? What do we need to start implementing more of? And maybe what do we need to take away? Andy: So, take another second on that. What we need to take away — that's a big trigger phrase for a lot of our families. What would lead to a child maybe having services changed or taken away? And what would typically be the justification for that? Kate: Right? So we first of all, in order to have that conversation at a reevaluation, we have to have data to support that. So we're looking at things like is the student meeting their goals? Are they accessing accommodations, services, and supports independently? So when we think about that, we think about students who are understanding of how their disability impacts them in the classroom, how to access supports that they need after identifying that support, and then can they access help if they're having trouble with that support? And that would come from both the student, so hopefully, we're hearing the student voice in this particular area. And then also from educators who may give feedback that the student is accessing these supports without prompts. And ideally, we have someone going in to observe this student to collect data on that to support the fact that the accommodation might still be necessary, but it might not be something that every teacher has to implement, because the student is implementing it on their own. Andy: Gotcha. So really, we're not just looking at just tear away services from a kid who needs it. But more talking about, we're looking for evidence that they're making progress to do some of these things more independently. Kate: Yeah, absolutely. Because that's the goal. Disabilities don't just disappear. And that means we have to teach students how to understand what they need and how to access it. Andy: So we've been talking about why kids need to be reevaluated and understanding that reevaluations happen every three years for identified kids for special education due to the law. What do those reevaluations look like? And how do you explain this to families and the kids themselves? Kate: So the first step is always going to be our school psychologist reaching out to the family, letting them know, you know, the reevaluation period is coming up. Either we need permission to access more testing, or we're going to complete a records review. At that point, then the student possibly undergoes testing with the school psychologist. They would likely get observed by the school psychologist in a couple of different settings. And then input is gathered from the teachers and from any other professionals that that student sees, such as speech and language, counseling, occupational or physical therapy — all of these people are providing input. Our school psychologist then compiles all of that into a document. And then the IEP team, after that document is finalized, we'll look at the recommendations in place. And then an IEP meeting will be held following that evaluation. What I like to tell parents is that especially at the high school level, your student's voice is critical in this, because there's always going to be data and different perspectives. But what matters in this whole scenario is your student and their needs. And if they find that needs are not being met in a particular area, we need to hear that, because we need to make sure we're then either collecting data or getting insight on that area to address it.Andy: Kate, I want to pause here to note a jargony phrase that parents may hear, which is "triennial evaluation." That's the technical term for the reevaluation that needs to happen every three years. OK, so how often do triennial evaluations get skipped or significantly modified?Kate: I think this depends on the district. And the caseload of the school psychologist definitely plays a role in this. Also, it depends on the student and their progress. And so I have seen at the secondary level, oftentimes we talk about a records review as — you know, we're not updating the testing. So, you know, I've seen that happen quite a bit at the secondary level, especially for ninth- and 10th-graders who have been qualified under the same disability for quite some time. And so you know, the school psychologist reviews the records, they feel like we don't need any updated testing, and hence they have skipped any new testing. So I've seen it happen quite a bit.I've seen it happen more over the past few years with COVID and the impacts of, you know, more students being identified and being referred to special education. Hence, we have upped the caseloads of some of these school psychologists and made it so that, you know, they just don't have time to get a lot of this testing done. Andy: Gotcha. So one part of this is that parents have to consent for however this process goes. If the parent then gives permission to say, we're going to do a shorter or a file review evaluation, because the child has autism, or the child has ADHD, and it's been well established, and there have not been substantial changes, parents can give consent to have merely a file review, perhaps, and an observation. And that will hold the place of doing a more comprehensive assessment. I think in most cases, you had mentioned, Kate, that in some cases where schools are overwhelmed with referrals, and they don't have adequate staffing to complete referrals. And in those cases, I want to emphasize, the parents still need to consent to skip or to make a smaller assessment goal. And that's really important. If a parent wants that assessment, by law, they're entitled to it. So when we think about how kids approach reevaluation versus their first evaluation, have you noticed any significant differences in the kids you work with and their parents — how they respond to reevaluation versus the initial evaluation? Kate: I have. I've noticed with the initial evaluation, it's almost more parent heavy, even at the secondary high school level. We have a lot of questions from parents, which are great. And parents should ask questions and make sure that they're getting answered. When I look at reevaluations and the students that are undergoing those, they're a little bit more comfortable. So they usually have had a case manager for quite some time. And so as a case manager, I might be the first line of defense for questioning, you know, well, do I have to meet with the school psychologist? And what are they going to ask me? And do I have to do those tests again? So the questions there are coming more from the student because they have a familiarity with our team of the special ed department at their school, versus that initial evaluation where that student doesn't even know who I am in my role in the school. So we're getting more questions from the parent end. Andy: Totally. So one of the things that parents express as their biggest fears is that reevaluation is going to lead to their child's services being discontinued. There are times where kids are making such good progress, that they're ready to discontinue an IEP, or maybe move to a section 504 plan. What advice would you give to parents about deciding if their child continues to need special ed services, and how they can safely know if it's time to discontinue? Kate: So I think the first thing is, let's look at the data. Because if we're at this point in the conversation, we have a lot of data accumulated. And I think also what we discussed earlier with the lens of, they might still need that support. But guess what? They're accessing it on their own, which is amazing. We always try to frame those conversations with parents as what a success that your student is able to access the supports that they need, and be successful in the classroom. And we might still need some of these supports, which might present in a 504 plan. Or your student might be accessing these supports and doing them independently. And we might be able to exit all services completely. Not to say they don't still need the help. But what an amazing accomplishment that they feel confident enough in both their need and their ability to access support that they can do it independently now. Andy: So how do you help parents understand that their child might no longer need a specific service, or a formal IEP? Kate: I think the first step is to understand where the student is at through the data. So if a student is meeting their goals, if we are as an IEP team, adjusting those goals to make them more rigorous, to make them more applicable to that student's transition plan, so where does the students see themselves after high school? If we're doing all of those things, and the student is meeting them, that's a great starting point for that conversation to say, here's what we're putting in place. Here's the challenge we're presenting. And here's your student meeting that challenge. And then we also have the discussion about what sort of supports do we get as people outside of a school building? So me, as an adult, I can still access help at my job. I just have to know how to do it. So we can focus on those soft skills for many of these students who would be exited from the IEP services and reassure parents that if your child has made it to this point, and we are seeing this much progress, that we also have covered these other skills that your student is going to need to be a successful person.Andy: Gotcha. Let's talk about that next big transition, the reevaluation around maybe getting ready for college. What would be a common reason why kids would get reevaluated as high school is getting ready to end? And can you talk about like how your evaluation teams at school usually help with that? Kate: Sure. So when we think about this process, the first step to it usually happens between ninth- and 10th-grade year where the special education team mentions to the parent and student you know, if you're considering postsecondary education, which might look like a community college, might look like a trade school, might look like a traditional four-year college, you need to understand that your IEP doesn't come with you. So although we can offer you services within the district until you're 21, that might not be the best plan for every student. So if your plan is once you hit that fourth year of high school, and you've accumulated the appropriate credits, your plan is to graduate and move on to another educational setting, you need to understand the difference between what supports can be provided there versus what we can provide here in your home school district. So we mention to parents, you know, if you start visiting schools, you need to make sure that you're stopping at the Office of Accessibility, to understand what supports that college is able to provide your student on a regular or as-needed basis. And most commonly, those supports might look like a separate space to take a test, extended time on assignments, copies of the professor's notes, things of that nature. In order for your student to access those supports at that level, they're going to need documentation on file with that school. Depending on the school, they may require the IEP, whatever the most recent IEP is, and potentially updated testing. So we make this very clear to the parents, because you might encounter a school that's saying, oh, you had a record review done recently. And we need updated testing within — I've seen it anywhere from three years to one year — in order to consider this disability and have it on file and have your student receive accommodations. So we make sure by 11th grade year that our parents understand if you feel as though you might require this updated testing, we want to make sure you have it done by us. And you have our paperwork with our recommendations for your student to make sure that they're accessing those supports at the secondary level. And the other key piece that we hear back from parents as well: We're not really sure if we want that. And I tell them it's better to have it on file and not need it than to be in a situation where your student has to access supports that they don't have a record of needing. Andy: That's really good advice. So the next step in the reevaluation process is deciding whether you agree or disagree with the results. In our show notes, we also have a link to an article on what to do if your child is losing IEP services. Kate, what a great chat we've had today. I really appreciate all your input. Kate: Thank you so much. This was a great conversation and an important one.Haizel: When it comes to the reevaluations or any evaluation that Sayeira has had, I don't feel that the evaluation themselves have been difficult. She tends to like attention. And she does well one on one. So she did well with that. I think the hardest thing I've had to deal with when it comes to Sayeira having her IEP is her realizing she had an IEP. For many years, she received the services and had no idea that she was any different. It wasn't until we were doing the high school application process where there is an opportunity for different consideration of students that have IEPs, and unfortunately it states in the booklet that you look at it — so students with disabilities, they have a different code for those students who apply to high schools. It wasn't until then that she realized that she had an IEP and that she had a disability in the sense of how the DOE considers it. And that was probably the hardest conversation I had with her. To help her understand there's nothing wrong with her — that everyone needs support. Everyone learns differently. It's just that in her case, she has a little more support than other students.Andy: So we've been talking about how reevaluations help schools and families see if a child's strengths and needs have changed over time. But what can adults say to kids about getting reevaluated? My next guest is Amanda Morin. She co-hosts Understood's "In It" podcasts about the joys and frustrations of parenting kids who learn and think differently. She's the mom of two kids who learn differently. And she also worked as a classroom teacher and as an early intervention specialist. Amanda, welcome. Amanda: Thank you.Andy: So you know getting reevaluated can be really challenging for some kids and no big deal for others. What kinds of things do you advise parents to say to their kids about reevaluations? Amanda: There are a couple of things that really matter here, right? Sometimes kids don't have a good experience in a previous evaluation, especially if it was their first evaluation, because they didn't know what to expect, or they felt on the spot, or they didn't have a good rapport with the evaluator. And I think it's important to know ahead of time, from the school, who is going to be evaluating. And if it's the same person, then I think there's an opportunity to say to your child, I know this was tough for you the first time. And also, you get to show this person how much you've grown. For older kids, sometimes you may just have to say to them, this is the grind. This is the grind, this is the part that's tough. This is the part that you may not want to do. And also think of how well things are going in school for you. Hopefully, things are going well, right. And I want to make that point, if things are going well in school, you can say like, think of how well things are going in school. If we know where you're at now, they could be even better. And if things aren't going well in school, this is your opportunity to say. The reevaluation is to really get a better sense of why school isn't going as well as it could be for you. So we can get more information together. So we can make a plan. So things get better. Andy: And I think that for a lot of kids, that becomes really, really important. The idea that we're really, we're getting almost a report card on the interventions. And by giving the same sort of evaluation tools three years later, we can really see: is the stuff working for you? And I think that if it's not and you continue to be frustrated, it's really important that you're involved in this. Amanda: I love the idea of describing it as a report card on of what we've tried. It's such a good way of sort of changing the framing of that, to be able to say to your child, "Hey, guess what, you're going to be the person who's grading on this one." Andy: And also being able to say to them, you know, this is another way of showing what's working for you and what's not. And I think that's a great opening question for a lot of kids. Like when we start off these meetings, and we're talking about getting reevaluated an older kid is at the table, and we say, maybe you can tell us about what do you think's working for you here? What do you think isn't working for you? Amanda: There are things to avoid in this as well, right? There are things that I would suggest parents don't say. Don't make promises, right? Don't make promises that this will bring about change. Don't make promises that this is going to keep things at a status quo. Because sometimes we don't know. A lot of parents worry about a reevaluation because they worry about what it means in terms of eligibility. Are we trying to test my child out of the supports they have? Right? I would not suggest passing that anxiety on to your child. I would also suggest for parents to maybe think about that a little bit differently. And realize that if that's what's happening — if what the reevaluation is showing is that your child has has gained so much from the supports and accommodations that they don't need the specialized instruction anymore — that's something to celebrate. That's something that's very, very cool. You may be anxious about it, because you may worry about what happens if then my child needs that again? And I think for you as a parent and for your child, if that comes up, you can say, "We can always have this conversation again." Don't worry that you've done well, right? Let's celebrate that.Andy: So we've talked about the what, why, and how of reevaluations. If there's one thing you can take away from this discussion, it's that reevaluations can help you and the school see how your child's strengths and needs have changed over time. So don't be afraid to ask lots of questions until you understand what's happening and why. As always, remember that as a parent, you are the first and best expert on your child.In our next episode, we'll focus on how to talk to your child about different steps in the evaluation process. We hope you'll join us.You've been listening to Season 1 of "Understood Explains," from the Understood Podcast Network. If you want to learn more about the topics we covered today, check out the show notes for this episode. We include more resources as well as links to anything we've mentioned in the episode.And now, just as a reminder of who we're doing all this for, I'm going to turn it over to Amalia to read our credits. Take it away, Amalia. Amalia: "Understood Explains" is produced by Julie Rawe and Cody Nelson, who also did the sound design for the show. Briana Berry is our production director. Andrew Lee is our editorial lead. Our theme was written by Justin D. Wright, who also mixes the show. For the Understood Podcast Network, Laura Key is our editorial director. Scott Cocchiere is our creative director. Seth Melnick is our executive producer. A very special thanks to Amanda Morin and all the other parents and actors who helped us make the show. Thanks for listening. See you next time. Andy: Understood is a nonprofit organization dedicated to helping people who learn and think differently discover their potential and thrive. Learn more at understood.org/mission.
ADHD and sensory overload
Food textures. The feel of certain types of clothing. Changes in routine. Sensory overload happens when something overstimulates one or more of the senses. There’s suddenly too much information coming in for the brain to process. It’s common in people with sensory processing issues. Many people associate sensory overload with kids who have autism spectrum disorder (ASD). But it can happen with other diagnoses too, like ADHD. Researchers are still looking into exactly why this happens. But they’ve found there are certain types of sensory information, like clothing and food textures, that are more likely to cause it.Some ADHD symptoms — like trouble paying attention to what’s going on around you — may lead to sensory overload. When you’re not tuned in, sensory information can sneak up on you.Imagine rushing to leave in the morning and suddenly realizing how late it is. In the two minutes you have, you grab the first shirt and pair of shoes you find and throw them on. But the shirt you grabbed has an itchy tag, and the shoes pinch your feet. Once you’re on your way, it’s too late. Your uncomfortable clothing has already created a sensory overload situation. There are also other reasons people with ADHD may experience sensory overload. Trouble with self-regulation can be a factor. So can struggling with switching gears (flexible thinking).
Understood Explains Season 1What happens after an evaluation for special education
The evaluation report is done. Now what? Learn about eligibility determination meetings and different kinds of supports for struggling students. Adverse impact. Eligibility determination. IEPs. 504 plans. What are these things? And what do they have to do with evaluations? This episode of Understood Explains covers how school evaluation teams decide which kids need which kinds of support.Host Dr. Andy Kahn is a psychologist who has spent nearly 20 years evaluating kids for public and private schools. His first guest on this episode is special education teacher Lauren Jewett. They’ll explain:What happens at an eligibility determination meetingHow schools decide who qualifies for an Individualized Education Program (IEP) What other kinds of support can help struggling studentsAndy’s second guest is parenting expert Amanda Morin. They’ll share tips on what to say to your child after an eligibility meeting — and what not to say.Related resourcesWhat to expect at an IEP eligibility meetingThe 13 disability categories under IDEAThe difference between IEPs and 504 plans10 smart responses when the school cuts or denies servicesParent training centers: A free resource in your stateEpisode transcriptLeslie: Hi, I'm Leslie from Little Rock, Arkansas. In second grade, within the first couple of weeks, it was decided by these evaluations that Sarah needed speech therapy, occupational therapy, and I think physical therapy. She wasn't holding her pencil right, she had her wrist turned the wrong way, she had some speech impediments. And then we would receive the results of that and eventually she reached her milestone and those kind of fell away. But she did always receive accommodations for reading and math, and that was evaluated every semester. And that IEP followed her from second grade until she graduated from Central High School with a 3.5 grade point average that last semester.Andy: From the Understood Podcast Network, this is "Understood Explains." You're listening to Season 1, where we explain evaluations for special education. Over 10 episodes, we cover the ins and outs of the process that school districts use to evaluate children for special education services. My name is Andy Kahn, and I'm a licensed psychologist and an in-house expert and understood.org. I've spent nearly 20 years evaluating kids for both public and private schools, I'll be your host.Today's episode is about what happens after the evaluation. All the testing and data collection is done, the evaluation report is done. The next step is a real mouthful; it's called eligibility determination. This is when the evaluation team meets to decide if the student is eligible for special education. Today's episode is going to cover three key things: how the eligibility determination process works, what kind of supports schools offer to students — including what's available to kids who don't qualify for special education — and what to say to your child after an eligibility meeting, and what not to say. But first, let's hear another parent story.Jennifer: Hi, my name is Jennifer and I live in Atlanta, Georgia. So, in the eligibility report, they enter all of the testing information into this program, and it automatically determines which categories the student could potentially qualify under. And so, one of those categories for my son was like, brain something, I can't remember. I wish I could remember what it was called. But it was something that was like crazy. And I was like, "Wait a minute, what?" It's just that even in the meeting, they'll tell you, you know, "This is automated, and just because it like flags it doesn't mean that we're really considering it, but we do have to talk through it."Andy: What Jennifer was just describing can be a jarring part of the eligibility determination meeting. This is the part of the meeting when the team goes through a dozen or so disability categories to see if the child qualifies for special education under any of them. And folks, just so you know, the name of the category that Jennifer was trying to remember is called traumatic brain injury. We're going to talk more about the disability categories and other key parts of the eligibility determination process.To help me explain all this, I want to bring in my first guest. Lauren Jewett is a special education teacher at an elementary school in New Orleans. She's also a special education case manager, which means she's been a part of a lot of evaluation teams. She's also a national board-certified teacher, and an Understood teacher fellow. Lauren, it's so great to have you here with us today. How're you doing?Lauren: I'm good. Thank you for having me on this show.Andy: So, Lauren, after an evaluation, the school team holds an important meeting called eligibility determination. This is where the team uses the evaluation report to help decide if the student qualifies for special education. So, if the student qualifies, then the next step is to develop an IEP, which stands for Individualized Education Program. So, this part of the process, determining eligibility for special education and then developing an IEP, this is all covered under IDEA. Lauren, can you remind everyone what IDEA stands for?Lauren: IDEA is the federal special education law that stands for the Individuals with Disabilities and Education Act. And it covers all the ways that a student would get into special education for their servicing, and all the different disability categories that they could qualify under. And then after the evaluation period or process, what they could get, you know, in terms of an IEP and what that looks like and all the legal procedures with the student.Andy: Gotcha. So, all states have to follow this federal law, but, you know, different states may handle eligibility determination in slightly different ways. I'm located in the state of Maine. So, in Maine, we determine eligibility, and we actually use a very specific form for eligibility determination, so we use what we call an adverse impact form. The purpose, really, is to see whether someone is eligible or not for services, based on all of the data that we have. We use our adverse impact form and we go through a series of checklists. But in different states, it's done in different ways. How do you guys do that in Louisiana?Lauren: So, our process is covered by a state bulletin; we have a state bulletin called Bulletin 1508, and Bulletin 1508 covers all of the ways that people appraisal and the school psychologists can qualify a student for the different disability categories. So, IDEA, which we talked about, that law has a bunch of different disability categories. And so that bulletin, 1508, outlines all of the different procedures that one would have to look at and use to determine what category or what classification the student would qualify under.Andy: OK, so taking a look at the big picture, you're talking about state regulations that make the evaluation team fill out checklists and answer very specific questions. And you have to do all this to determine if a child meets the IDEA’s two most important requirements to be eligible for special education. Number one, the child has to have a disabling condition, and number two, that disabling condition must adversely impact the child's education. So, when we talk about adverse impact, like an example, let's say we're looking at a specific learning disability, if a child was let's say, half a grade level behind, would that typically be adverse impact, or would that not be enough?Lauren: We usually, you know, if I'm thinking for an example of like, specific learning disability, you know, in our state, in order to qualify for a specific learning disability, there has to be an area of strength, and then an area where the student is, you know, struggling. And then they look at standard deviations below a mean, or above a mean.Andy: OK, so I'm going to decode some of this information. Because again, it's really, really helpful. When we talk about things like standard deviations, what we're talking about is, when you're comparing a child's piece of information to a large group, and how far they fall from that large group, if it's far enough away, that would be something that might be considered adverse impact, meaning adverse impact really refers to is the child able to do what they're needing to do, like other students of their age or grade level? The adverse impact would be "I can't do this because I have dyslexia," or they can't focus and engage and participate in a way that would be manageable for them because of severe ADHD or some other disabling condition. So adverse impact's really about there's a functional thing that isn't happening. You could have a diagnosis, but not necessarily show adverse impacts. And that can be confusing for people. How do you go about explaining adverse impact to your families if you're talking to them about that?Lauren: Yeah, I think when I'm thinking about adverse impact — especially when I look to write IEPs, right? — we think about a disability impact statement, which is kind of similar, you know, like, how is the disability impacting the student in class? So, for example, if the student has dyslexia, how is that affecting what they're doing in class across different subjects all day? So, if the student has a specific learning disability in reading, and they are two to three grade levels behind, thinking about, OK, this is the student's disability, this affects their ability to read on grade level texts that are going to be provided to them and given to them in class. So not just in reading class, but in all those content areas that have a lot of academic domain vocabulary, a lot of reading comprehension needs.And so, when I break that down, I'm trying to give more applicable information to a family, you know, because again, there's so much jargon. So then let's, like I say, let's take a step back and look at how is this going to look like in the classroom? How is this affecting them on a day-to-day basis?Andy: Gotcha. So really, adverse impact is important because you're talking about the how, right? How do we know that this child isn't doing as well as we hoped that they would do because of this disabling condition? OK, and that's really important for families. So, when we talk about the information being considered, who's typically present at the meetings where you're going over the evaluations and making that eligibility determination?Lauren: It usually would be the school psychologist or educational diagnostician — those are the people who maybe conducted the different set of tests and assessments that were given to the student, or the person, you know, who wrote and did the comprehensive report — you're gonna have the parent there, the parent may have another family member there, maybe an advocate. But you could have a special education coordinator there, the teacher, other members who contributed to the report, or additional teachers. You know, if it's a reevaluation for a student that's already been in special education, then it is likely that the special education teacher may be there because that student has already been receiving services.Andy: That was super helpful, Lauren. When we talk about the disability categories, we traditionally talk about the 13 disability categories in IDEA. I understand that in certain states, we can actually see as many as 14, or even 15 categories. The categories that I most commonly see us use in schools are specific learning disabilities, speech and language impairment, other health impairment, and autism. Less commonly, we might see intellectual disabilities, for example, or deaf-blindness.I'd like to shift our conversation a little bit. So, Lauren, when we have a child who's found eligible for special education services, and they meet those two requirements, they've got their identified disability, they meet the adverse impact, adverse effect criteria, what happens next? Let's assume we're at that next meeting.Lauren: Yeah. So, the next step would be for the IEP team to convene and meet, and look at the information that's been provided in the evaluation, and then create an IEP for the student. So oftentimes, you know, these evaluations are very long. And you know, when I receive those evaluations, I have to read them and go through everything and think about what makes sense for the student. But the main thing in that meeting, the IEP development, is really taking that information from the evaluation, and making sure that it's reflected in the spirit of the document.Andy: Yeah. So, let's pause on that for a minute. You're talking about how you can make sure the IEP reflects what's in the evaluation report. How can parents help with this? Like, what role can parents play in developing the IEP?Lauren: I always encourage families to, you know, as we start those meetings, those IEP meetings, I always say, "There's going to be a lot of information. You know, stop if you have questions." And also like, every page that we go through, whoever is leading that part of the meeting, we have the person who's leading that part, like stop and ask the parent like, ''How does that sound? Do you have input? Do you have anything you want to add?'' You know, it just depends. But I always, you know, tell parents ahead of time to, I explain — especially if it's their first meeting ever — I just say, you know, like, ''Bring your ideas of what you would like to see. What do you hope for your child to get out of this? What are your concerns? What's not currently working?''Andy: So, Lauren, what if the child has a disability, but isn't eligible for special education? What are we gonna do in a situation like that? Because if a child's not getting an IEP, how do you explain that to a parent?Lauren: In that conversation, you know, if they're not going to have an IEP, sometimes we do try to provide supports in the classroom through a 504 plan. So, a 504 plan comes from section 504 of the Rehabilitation Act. And that's a civil rights law. So, a 504 plan is more like an accommodation plan that a student might have in the general education class. It's not specially designed instruction, it could be the student gets some extra time when they're doing assignments, it might be specified seating; it doesn't have as many accommodations or modifications listed as an IEP because an IEP is going to be more situated and individualized for the student on their goals.And then it is also allowing, like I said, specially designed instruction modifications, you're not going to see that as much with a 504 plan. A student could have a 504 plan for a short period of time as well. Maybe they break their arm, and they need a scribe or need some different assistance in class for that period of time. So, it could range in different situations. But again, it's different because it's not, you know, listing a bunch of different goals and related services like an IEP would.Andy: At the eligibility determination, is a common outcome that the team decides that the student qualifies for a 504? Or does that happen at a different meeting if they don't qualify for services under IDEA?Lauren: It may be a separate meeting; maybe the team comes together, they go over the evaluation — no exceptionality is found. And so, we talk as a team and say, well, you know, sometimes teachers will be indicating that they still have concerns about the student, and how they're going to be able to do everything in class without certain supports that are formalized. So, you know, maybe their recommendation would be a 504 plan. And so, it could be a separate meeting that happens with maybe not all the same people at the table, but definitely the teacher and the parent, and the person who's responsible for, you know, handling the 504 plans, because that's a whole other system, you know, a 504 plan versus the IEP. The team looks at what accommodations would be appropriate for the student. And it could be accommodations like the student gets some extra time on assignments and tests, maybe they get a small group or individual testing because they need to focus.So those are some examples of things that we put, you know, in 504 plans, and we have students that have 504 plans and still get those accommodations when it comes to standardized and state testing, they still get those things. So, it's not like they only get them in the classroom, and then they don't get them in other things. It goes through all the different situations and circumstances that the student could have those supports.Andy: So, you mentioned that for kids who don't qualify for an IEP, sometimes you try to provide a 504 plan. What about kids who have a disability, but don't have an IEP or a 504? What are some of the things a school can do to help support those kids?Lauren: You know, a student that has an IEP, right? They have specific rights that are outlined, but every kid has all different specific learning needs, whether they have that IEP or not. So, establishing a mindset of how do we make the classroom environment, as well as the learning materials more accessible? There's things that students might need from time to time, and we just have to provide them and make sure that there's still supports that are in place there that may not need to be supports that are there long-standing.But we know we don't just like, you know, not give supports as a teacher, if we see a student struggling, we want to help. And so, I think reframing it is like, "OK, well, just because they have an IEP, only those groups of students can get help." No, like all students can get help. So, I think that there's still a way to design supports within a classroom or for students, whether they have that IEP or not.Andy: So, Lauren, I want to circle back to some really good advice you gave about encouraging parents to come to these meetings ready to ask questions and make suggestions. And listeners, one thing that can help you do this is to make sure you get a copy of your child's evaluation report before you go to that meeting. You have a right to see that report in advance. We've got a lot more information in episode three about your evaluation rights.But I want to make sure you know that you have this right in particular, because it can be really helpful to look at the report ahead of time, think about what questions you want to ask and what suggestions you want to make, so you can be an active member of the team during the eligibility meeting. Lauren, thanks so much for being with us today. I've really appreciated your input and it's been so awesome to learn about how you do your work down in Louisiana.Lauren: Yeah, thank you, I really enjoyed this conversation.Michele: My name is Michele and I live in the Bronx, New York. My oldest son was not given a diagnosis because they deemed him not eligible for special education services, because they basically said there's nothing, there's no real issue. He's just very creative, his mind needs to be stimulated, but they couldn't justify providing services. So, he was never given an IEP, he was never in special education.Andy: So, we've been talking about what adults can expect after an evaluation, an IEP, a 504, or informal supports. But what can adults say to kids about these things? And how are kids likely to react? So, to help me unpack all this, I'd like to bring in my next guest, Amanda Morin, she co-hosts Understood's "In It" podcast, about the joys and frustrations of parenting kids who learn and think differently. She's the mom of two kids who learn differently, and she has also worked as a classroom teacher and as an early intervention specialist. Amanda, welcome.Amanda: Thank you so much, Andy. And as you know, I've also attended a number of IEP meetings on my own too, right? As a parent. Andy: You've been at this table. Yeah. So, let's jump into this a bit. I mean, you know, what kind of things can parents talk to their kids about when we're talking about getting an IEP or a 504, or some of these supports?Amanda: So, I think the first thing is to know that kids have so many reactions to things, right? The same way we as parents have reactions to things, your child's gonna have a whole bunch of reactions to things, and it may not be what you expect, right? For some kids, it may be relief, "OK, phew! We're going to sit down and finally have this conversation. And maybe I'm going to feel better at school, maybe I'm going to feel like I can really do this, there's going to be more help." And a lot of parents don't expect that reaction. And so, as a parent, I think being open to whatever your child's reaction is, really matters.So, to be able to say to them "How do you feel?" instead of saying to them "Do you feel sad? Do you feel angry?" Like, don't put those emotions in their minds until they tell you what's on their minds. And I think that's important, too.Andy: Yeah. So, you're talking about their emotions relative to the reaction to all the things they're learning, which is a ton of information. And I think it's really important — you mentioned — when you ask about how they're feeling, the open-ended question, right? "What are you feeling? What's it feel like?" I mean, and I think for younger kids, they may struggle in expressing that. And yeah, I think you made a great point that you're not always going to know what to expect, because they may say things that just shock you or surprise you, or please you, I don't know.Amanda: Or they may not even care, right? Like sometimes kids don't care the way we do as parents, and we're like, "What? This is such a big deal." And your child's like, ''No, not really. Not that big a deal.'' And so, I think you can follow their lead in that situation and be like, "Oh, OK. Well, this is a big deal for me. And I'm sorry to assume that it was a big deal for you." And I don't mean that in a sarcastic way, I mean like sincerely to be able to say to your child "Oh, it feels like a big deal to me. I didn't mean to assume that it was a big deal for you too." And then sort of move on from there.Andy: For sure. For sure. So, let's say that your child's starting to express some of those, you know, unhappy emotions, that anger, or saying, "Well, this isn't true" or are feeling sort of down about it. Where do you go? How do you really navigate that?Amanda: That one's really hard. I mean, I'm just going to be honest, and say it's really hard. Because what it does is, your child is all of a sudden hearing about themselves in a totally different way, right? They're hearing about themselves, especially because unfortunately, a lot of evaluations are around looking for weaknesses, right? Looking for deficits is the word that comes up a lot. And I think the way to handle that with a child is to say, "Of course you're angry; of course you're sad. Of course this tells you about yourself in a way you hadn't thought about yourself before. But you're still you, you know. You haven't changed; the paperwork says one thing, it's just talking about you. It's a snapshot, it's a picture of you, but you're still the same person you were. And what this does is allow us to talk to the school about whether or not you're eligible for help, for additional support, for ways to make you feel like you are more you than you've ever been before." Because when kids have the support they need at a school, whether it's through an IEP or a 504 plan or informal accommodations and support, they really do feel like they get to be more of their full selves because they get to show what they know, right? In that moment, you can say "You're angry because you're not able yet to show what you know." But I think it's OK to just say, "You feel this, and we can sit with it. It's really hard, right? It's really hard." And they may be angry at you.And I think it's important to know that because you're the person delivering the information. You're the person who may have started this process. You're the person who's talking to them about this. If they're angry at you, that's hard. But I think you need to redirect it. And oftentimes that's about "I hear that you're angry, and I really want to talk to you about this. I'm not able to have this conversation while you're yelling at me." Right? ''So, we're gonna take a moment. When you can talk to me calmly, we can have this conversation.''Andy: Amanda, this is amazing advice. And I'm really glad we could do this today. Thanks so much for being here.Amanda: Yeah, thanks for having me.Andy: So, we've talked about how schools determine who is eligible for special education, and other ways schools support struggling students. We've also talked about how to ask open-ended questions to help your child talk about how they're feeling. If there's one thing you can take away from this discussion, is that you can play an active role in what happens after the evaluation. So don't be afraid to ask lots of questions until you understand what's happening and why. As always, remember that as a parent, you are the first and best expert on your child.In our next episode, we'll focus on the difference between private and school-based evaluations and why some families choose to get one or the other or both. We hope you'll join us.You've been listening to Season 1 of "Understood Explains" from the Understood Podcast Network. If you want to learn more about the topics we covered today, check out the show notes for this episode. We include more resources as well as links to anything we've mentioned in the episode. And now, just as a reminder of who we're doing all this for, I'm going to turn it over to Abraham to read our credits. Take it away, Abraham.Abram: "Understood Explains" is produced by Julie Rawe and Cody Nelson, who also did the sound design for this show. Briana Berry is our production director. Andrew Lee is our editorial lead. Our theme music was written by Justin D. Wright, who also mixes the show. For the Understood Podcast Network, Laura Key is our editorial director. Scott Cocchiere is our creative director. Seth Melnick is our executive producer. A very special thanks to Amanda Morin and all the other parents and experts who helped us make this show. Thanks for listening and see you next time.Andy: Understood is a nonprofit organization dedicated to helping people who learn and think differently discover their potential and thrive. Learn more at understood.org/mission
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