I’m an ADHD expert. My kid still can’t get help.

Rae Jacobson has spent her career covering ADHD and neurodivergence. She hosts the Hyperfocus podcast and helps lead Understood’s editorial team. But even with all that knowledge, she still can’t get the school to evaluate her daughter for an IEP. Here’s how she’s supporting her daughter while they wait for school services.

• Listen: The Hyperfocus podcast with Rae Jacobson

• Watch: When “fine” isn’t fine: Kids fall apart at home for a reason

Jessica Shaw: When my kids were younger and I was trying to get support from their school, I felt like if only I had more information, more expertise, all my problems would go away. Getting that classroom accommodation, that would be a breeze.

Right now, my colleague Rae Jacobson is trying to get school services for her daughter. But Rae has something most of us don't have: a whole career focused on neurodivergence. For years, she was the senior editor at the Child Mind Institute.

Today, she hosts a podcast about neurodivergence called "Hyperfocus" and helps lead Understood.org's editorial team. Rae says, "I do this for a living. I write these articles. At the end of every single one of these things, we say like, 'Well, if you're concerned, get help or contact your child's provider' or whatever."

"And we don't talk about the fact that the next step just isn't there for so many people. Even if you have all the knowledge, even if you have all the things that I'm walking in with, which is a lot of privilege, it's not there. And I'm like the best case scenario."

This is "Everyone Gets a Juice Box". I'm Jessica Shaw, and today on the show, Rae Jacobson shares what she's doing to help her daughter Alice while they wait for support from the school.

(01:14) Identifying the signs

Jessica: When did you realize that Alice should get a neuro-psych?

Rae Jacobson: I do want to say before we start that Alice has not had a neuro-psych. Realizing that she should get one and actually getting one, that's the space we're living in now. It's like a Grand Canyon, truly. So, we're sort of at like maybe the southern rim of this canyon, one might say.

Like I said, I'm very lucky because I have this background. I have ADHD. I have inattentive ADHD, and I was like so many other girls my age overlooked. "She's smart, she's just spaced out, she should get it together. She's kind of lazy, ditzy," insert all the unpleasant words here.

And eventually got diagnosed at 21, but because I have this background, I can see the signs really easily. So, my daughter is amazing. She's this brilliant, hilarious child. She's an incredible reader. She's very funny, but she has what to me are really obvious signs of inattentive ADHD.

Jessica: Alice is in third grade now, but when she was in first grade, she was in an inclusion class. Alice didn't have a diagnosis. She was just in the class by chance. A classroom with both neurotypical and neurodivergent kids. You'd think this would be a great thing for a kid like her. But then Rae started getting the phone calls.

Rae: I know you have neurodivergent kids. You've gotten the phone calls.

Jessica: Yes, I mean it's like I live in dread of the caller ID.

Rae: "So, Miss Alice," and you're like, "Oh, okay." And I don't know about you, but because of my background and just like I'm knowledgeable about it, but I also have a background as a person who went through this, so my response to it is like the intellectual piece of like, "Okay, well what interventions are you using at school so we can use them at home?"

And the other part of me is like, "Thank you for calling. I'm going to go in my room and cry now." It's kind of like a parallel experience.

Jessica: Tell me a phone call you got. What was Alice doing?

Rae: "Miss Alice is making faces in class. She's looking off into space." "Miss Alice" — it's always "Miss Alice," which is I think quite respectful. This was the one that pushed me over the edge. "She's a mess. She's such a mess." This was her teacher who has a New York accent.

"She's drawing on her desk. She's losing her things. She can't keep it together. She's always the last one out of the class. And we told her, Miss Alice, if you're going to be a mess, people are going to be upset with you."

There's a lot of inappropriate stuff in that, and there's also some really obvious stuff in that, like, "Okay, well, how are you helping her get things together? We think she needs an IEP." No, she doesn't need an IEP. She doesn't even sit on the special education side of the room.

Jessica: That's what the teacher said to you.

Rae: My first thing was like, "There should not be a special education side of the room."

Jessica: That's called an inclusion classroom?

Rae: There's a way that that's supposed to work. But beyond that, I think when I hear that, I immediately go towards like, "Okay, well, let's see how we can fix this because I don't hear a problem."

Because I have the luck, the privilege of knowing that this is something that's simply a brain that is working in a certain kind of way. This isn't a problem. My kid's not being bad. She's not not trying. She's not being difficult. She simply has a brain that works a certain way. So, how are we going to scaffold that? How are we going to help that?

And for her, we kept coming back to the same thing, which they'd said, which is really common for girls with ADHD. "She really just needs to get it together. There isn't a problem. She's really smart. Her reading is good, but she just needs to try harder."

But that's not what the problem is here. The problem is that this kid has a learning disability and you don't see it. That's the professional side of my brain and to some degree the mom side of my brain. Of course we all want to support our kids and help them do well.

The flip side is the more sensitive side of my brain, which is like, "What did you say to her?" There is like a very defensive piece of me that wants to rise up and be like, "Aha, you called my kid a mess? Did you call her that in front of the other students?”

Jessica: Did you say people are going to be upset with her?"

Rae: "Did you say people aren't going to want to sit with you if you're drawing and you don't pay attention to them?" I'm trying in those moments because I also recognize teachers are working really hard and there's not a lot of training in this, and people don't get the backup that they need to be able to help kids in the way that they should.

So, I'm fighting all these different urges. I feel like you probably have gone through this with your own children where you're like, "Okay, all of these things are true at the same time. My focus is on making sure that my kid's okay. How do I do that?"

Jessica: When I went through it, it was a little bit different because I had no knowledge. So, when I got the phone call, it was like the phone calls, plural — I mean, as if one phone call — all the calls. It was like, "Oh, no, what do I do now?"

And then it was finding out that my kid's teacher, when everyone was sitting on the rug and she kind of couldn't and she couldn't sit still, the teacher sent her to a desk and had her just put her head down, which is the most punitive, horrible thing.

So, I was kind of starting from square one of like, "Okay, what is that? Is this big?" You know, she's saying it's behavioral. Is it behavioral? And then it's like full speed ahead. Must educate, must absorb everything, must get this tested, etc. You have all of this knowledge when you get the call, and even before. How did that help you?

Rae: First, I want to say I'm sorry that that happened to you and I'm sorry that happened to your kid. That sucks. That sort of confusion though is what most moms go through, what most parents go through. And I, like I said, it's like a hard-won privilege, but it's a privilege to have all that background already there.

That said, it didn't necessarily change for me what happened next. When I say Alice hasn't had a neuro-psych, I said, "I think she needs an IEP. These are the reasons why I think she needs an IEP." And they said like, "You know, you can write a letter, but I'm not sure that we agree with that."

Which is again a common problem for kids who have this kind of higher-functioning stuff. But after a year in first grade of her coming home crying every day and writing us notes where she couldn't quite spell yet, so they all said, "I hat school," which was great. So, I have a couple of those.

Jessica: Coming home crying because of what the teachers were saying to her?

Rae: "I can't be still anymore. They don't let me move around at all. And I'm an angry kid. I'm a bad kid. I'm stupid." I mean, you know, pile up, pile up, pile up. So, when you say like, "How much does your knowledge help you?" it helps me with what I know should be happening.

It helps me with what I say to my daughter when she is upset. I got her books on ADHD. I knew which ones to buy. We talked about them together. We talked about our brains and how our brains work. All that stuff is great and it helped, but it doesn't change what she's going through during the day. And it didn't change how it felt to watch my kid cry every day for a year.

(07:38) The wait for a neuropsychological evaluation

Jessica: So, Rae and her husband started the process of getting a neuro-psych for Alice. A neuropsychological evaluation would arm Rae with a diagnosis from a doctor. Now, Rae is pretty positive that Alice has inattentive ADHD. But if the school wouldn't recommend an IEP, a formal diagnosis would require them to give Alice the services she needs.

Rae: That said, a neuro-psych, as you know, is not exactly affordable. It's not available to everyone. No amount of access or knowledge is going to change that price.

Jessica: Tell me about that process.

Rae: Jessica, $7,500. And I don't know about you, but I don't have that lying around. We tried to find people who took insurance, and one of the reasons I'm sitting here with you today is because we found out that it would be a yearlong wait.

Jessica: To have a neuro-psych that your insurance covered?

Rae: Yes.

Jessica: So, you have the option of paying $7,500 out of pocket, which is insane.

Rae: Yes, I like that you say option.

Jessica: Right, exactly. Option with the like the most lowercase of o's. Or you wait an entire year. And on top of all of this, whatever diagnosis or information that you could theoretically get from this neuro-psych, you kind of have already.

Rae: And it's the kind of thing where I think I still want that information. Not so much the information as the diagnosis because that's going to unlock support forever. You need that because that's how the system works. And if we want to get her medication, if we want to get her an IEP in middle school, if we want these other things, that's all behind that gate. And I can't get to it whether I know what's there or not.

Jessica: Right, and you can control how you educate and raise and talk to your kid, but not how teachers do. And it's almost — it gives teachers a little bit of a roadmap, I would say.

Rae: Yeah, I think teachers need it. And I think to the point about teachers working really hard, there's a value in having something that's like, "Not only is this something that helps me understand this student and this child, this is also something that allows me to give them the support that I would like to give them anyway because this is how the system operates."

Jessica: So, tell me about when you called and they said there is a yearlong wait.

Rae: Have you been through this?

Jessica: I have, and I remember for me, I was like, "No, no, no, there's no way."

Rae: I was going to say how did you react?

Jessica: It was almost incomprehensible because you're like, "No, no, no, what you do is you evaluate kids and it's important that you do it sooner rather than later because every year that goes by —" like, of course there's not a yearlong wait.

Rae: What do you mean? That's all of first grade. That's all of second grade. That's all of whatever. Yes. I fully shot the messenger, 100%. Whatever this poor girl on the phone who was like, "Yeah, it's a year." And I was like, "That can't be right." I mean, even though I know, again, because I know this stuff, I know that that happens all the time. I don't know why I thought this was going to be different, but some part of me was like, "There's got to be something else."

And she was like, "No." And on my end, I'm like, you know, we don't swear on these shows, but there was in my heart anyway quite a bit of swearing. And it's the sensation of like injustice because I also know that my kid's not the only kid going through this. This is so many people experiencing this, people with no other option, people who are like, "My kid is drowning. We don't have a year."

When I was a kid, that would not have been okay. I wasn't okay. I know so many kids who go through this, they don't have a year. And the more you see that, I don't know, it feels like it's all kind of this ball of frustration that you hold where you're like, "This can't be how this works."

Jessica: Did you ever think about, "I need to find a way to find $7,500 to do this" because…?

Rae: Yeah.

Jessica: Yeah.

Rae: I mean, didn't you?

Jessica: Yeah.

Rae: Like we all do, right? And it's a matter of like, "Is this manageable? Is this something that I can do? How long will it take to find that in all the couches of the world? And how am I going to figure out how to get the things that I need then afterwards?" I talk about the price of it in part because we act like these things are accessible.

Like, I do this for a living. I write these articles. I have talked about this for the past 20 years. At the end of every single one of these things, we say like, "Well, if you're concerned, get help or contact your child's provider" or whatever. Like, there's always this thing where it's like, "And the next step is —" and we don't talk about the fact that the next step just isn't there for so many people.

Even if you have all the knowledge, even if you have all the things that I'm walking in with, which is a lot of privilege, I want to be clear. It's not there. And I'm like the best case scenario.

Jessica: Yeah, I remember feeling very very much like with the price because, yes, it was I think it was maybe even more than a year when I wanted to get my kid evaluated. And thinking, "Okay, I have to just find the money for this." And I whatever I need to do, go without, ask for help, whatever it is.

Because if we don't do that for our kid, who do we do it for? And I felt like, "Is this going to be the thing that opens up, that the skies part and I have all of the information?" I felt very stuck. Like, do I mortgage my life to do this thing that's so important or do I wait? And if I wait, does that mean I don't love my kid enough?

Rae: Yeah, I mean, it's an impossible decision. In general, how did you figure out what you decided to do? Like, I'm very curious genuinely because I don't think I think we should be clear that decision isn't even on the table for most people.

Jessica: Absolutely.

Rae: Right, like even the fact that you could be like, "I could mortgage my life," that's not there for a lot of people. But making that choice, which so many of us have to do or not do, I don't know, what went into it for you? Because I need the advice.

Jessica: So, for me personally, we found the money. We got it together. It wasn't 7,500 back then, but it was I think it was 5,500. It was — I mean, it was an obscene amount of money. It was too much money. I think the wait for insurance to cover was well over a year. It was I think a year and a half.

And ultimately, it was just we were in this position where I didn't have an understanding and a background and a lot of other resources. So, I was like, "I need this yesterday because my kid's teacher is putting her with her head down at a table."

Rae: That's still — that is a wild story.

(13:50) Advocating for her child

Jessica: So, how does your or did your expertise help you at all, or does it help you? Because it sounds like you're in it.

Rae: I mean, yes, absolutely it helps. Because when my kid comes home crying and saying she's stupid, I know what to say, because I know what that feels like. It's not so even just my experience as like someone who covers learning disabilities and who has a counseling degree. It's that I know the feeling. That was me.

And I know what you need to hear in that moment, which is not like, "No, you're so great! You're an amazing kiddo! Everybody struggles!" It's like, "No, no, no, your brain works differently, and here's why. Do you want to look at this textbook that I have about ADHD? We can see exactly why you have trouble finding your things, and let's talk about it."

"You know what, maybe we need to do this, this, this." Like, I'm very solution-oriented in it because I want it to not feel like a personal flaw. I spent my entire childhood assuming there was something genuinely wrong with me. My kid doesn't feel that way. And that — that's the benefit of expertise.

And also just the benefit of like having been through it myself I think is really it's less like, "Oh, I have this fabulous background" and more like, "This is me too."

Jessica: Yeah, how does it feel to be able to explain — explain this to her?

Rae: I don't know if you feel this with your kids. Like, that's your kid, and you can't buffer most of their life. Like, I can't step in for 99% of the stuff that she's going to go through. Nor should I, you know, that's her right to have her life and explore the world in her way.

But this — this is the thing where I can like lay down it, you know, they talk about like the mom flips the car. This is my car. I know how to get under it. I know how to flip it over. And if I can do that for her, that's great. So, what it feels like is like, "Just let me get in there. Put me in, coach. I know how to play."

And so it's less like, "Oh, I feel gratified" or "It felt good" or "It was solved" and more like, "God, this is the thing I can do. And I can't fix it all, but at least I can make this better."

Jessica: Yes, how do you navigate working with the school? It's one thing to have her come home and you're like, "Okay, I can get her to not be crying and thinking she's stupid." I can't control how the teachers are going to be treating her because, again, goes back to there's a yearlong wait. They don't have the document, this like, you know, tablet that says, "This is how what you need to do."

Rae: I can't control what the teachers are going to say to her. I can't control what her future partners will say to her. All I can do is try to model a good relationship. Like, I think a lot of it is I'm not going to be able to stop all the things that will come across your way.

And she has ADHD, so whether or not she has an IEP or whatever, there are going to be things that are hard and hard in a different way than they would be if she was neurotypical. What I can do is give her language to explain what's going on for herself to herself, to others.

If her teacher says something like, "Well, you're such a mess," she can be like, "Well, I have ADHD, so I need a little bit more time to clean up my things." We work on a lot of like the really — the advocacy piece. That's the thing I can do. I can't stop people from not having the knowledge that I have. I can't stop people from being mean even, but I can at least give her the tools that she needs to deal with it when it happens to the best of my ability. It's not going to be able to fix it all, but that's what I'm focused on.

Jessica: What did that feel like when you said to your daughter, "Hey, this is how you advocate for yourself"? Did that — was that a pressure on her?

Rae: I mean, when you say to a kid, "Okay, when you go in and you're going to tell the teacher that you had a little trouble doing the homework so you need an extra day," and they go like, "I'm not going to do that." Like, of course not.

I think realistically, and this is like not a really satisfying answer or thing to believe, but I do think this is kind of like — maybe it's a personal take, but we like to pretend that having a different brain isn't harder. And when you come up against like institutions and situations and this sort of immovable monolith like school, it is harder.

It doesn't mean that there's anything wrong with our brains, but it — it does make things harder. That's why we have all these things. So, I guess part of me is like, yeah, it's an extra burden, but it's an extra burden that I want her to figure out how to carry. And it's one that I want her to find as a powerful thing rather than something that's weighing her down.

And so it's practice. None of this stuff is stuff where, like I said, I don't expect her to walk in and be like, "I am advocating for myself!" But in this year, in this gap, in the canyon that so many kids live in, figuring out how to be like, "Let's just try speaking up. Let's just try having even like a second set of keys, or making sure that your book is really colorful so you see it if you leave it behind."

These kind of little structures that you can do and show and model and also kind of teach, that stuff is really helpful. And, yeah, it is a burden. But for me, for my own experience, I felt better and stronger and safer understanding what the burden was and knowing how to carry it than I did just trying to find my way through with nothing.

Jessica: And was there ever a moment where she came home and was able to express, "Oh, I used your — the tools that you gave me"?

Rae: The gratifying perfect mom moment! It actually has happened, yes, which is like amazing. But it's always something that — it's not what I expect. She'll be like, "Well, at the end of lunch today I couldn't find my book, so I said I have to stay in the lunchroom longer to find my book."

And you're like, "That's probably not really easy for your teachers or the school, but at least you spoke up." And they were like, "You can go back to your classroom and we'll help you find your book." But after a year of hearing her call herself stupid every day and us having these long conversations, "You're not stupid. You're not bad. You're not angry. You're not bad at school."

Having her be like, "Oh, yeah, I had a great time today. We learned all this different stuff, and like, I love doing this, and I love doing that." Like, those are — it's not like this perfect little package of like, "Mom, I used your tool and everything is good now." But what it really is she's happy and she's doing okay. And it's not easy all the time and things aren't always going great, but for the most part she's learning and she doesn't think badly of herself. And that to me, that's the ultimate win.

(19:58) Advice for parents

Jessica: Was there any piece of advice that you got while going through this from anyone that in any way helped you navigate it?

Rae: I mean, I'm lucky enough to know all these awesome parents who've been through this, and each one of them just said — it sounds like a horrible piece of advice to find comforting — but "Yes, it sucks as much as you feel like it does." It was like less advice and more of like a validation of like, "This isn't how it should be. Like you said, this is not how this is supposed to be. It shouldn't be this hard."

And it should be something that you can just be like, "My kid needs help, and here's the help."

Jessica: Yeah, and even in your role here, I mean, you're figuring out how to navigate this. Is there something that — a piece of advice that you give to people?

Rae: I had a teacher in third grade, this teacher Dan, who was great. And when I was really starting to fall apart in school, he said this thing to my parents that my mom is like — you know, you have the little gem that you hold on to that someone said to you one time and this was hers — and he said, "Just keep her ego intact. Help her know that she's smart and she'll be okay."

And they did a great job. But that thing about keep her ego intact, if you know that your kid is struggling, it feels awful. It's an awful feeling. But if they know that you love them and they know that you know that they're going to be okay, that's a powerful feeling.

And so if you're kind of like experiencing your own stuff, like I can sit here with you and talk about it and you and I can talk about how hard this is. But for my kid, I'm like, "This is going to be fine. We're going to get through this and this is going to be great because you're great."

"We're going to get out the other side and, you know what, really smart people learn differently all the time. And I'm so glad that I have a kid with a cool brain in my family because I don't want to be the only one." You can make it fun and you can make it valuable. And so it's not like, "Oh, here's the trick, here's the cheat code," but it's just like love your kid and let them know that they're okay. And I think that's like more than half the battle.

Jessica: Many thanks to Rae Jacobson for speaking with me. I wish I'd had a Rae in my life when my kids were younger. If you want to hear more from Rae, check out her podcast, "Hyperfocus". Thanks for listening. See you next time.

Thanks for listening to "Everyone Gets a Juice Box." Our show is hosted by me, Jessica Shaw. It's produced by Cody Nelson, and video is produced by Calvin Knie and edited by Jessie DeMartino. Briana Berry is our production director, and Neil Drumming is our editorial director.

If you have any questions for us or ideas for future episodes, write me an email or send a voice memo to podcast@understood.org. This show is brought to you by Understood.org. Our executive directors are Laura Key, Scott Cocchiere, and Jordan Davidson.

Understood is a nonprofit organization dedicated to empowering people with learning and thinking differences like ADHD and dyslexia. If you want to help us continue this work, donate at understood.org/give.