No dyslexia tutors, so this mom became one

Melena Blanton is a clinical psychologist and mom of two neurodivergent kids in Eastern Kentucky. She’s had to fight through lack of resources and small town prejudice to get her kids the help they need. That’s meant driving hours for evaluations, training as a tutor herself, and building a scrappy sisterhood of moms doing the impossible. This is what advocacy looks like when the system is broken.

• Watch: First-generation parents, neurodivergent kids, and redefining excellence

• Read: Barton System: What you need to know

Melena Blanton: I got the email, late-night at night. I also have ADHD as an adult, so I couldn't ignore it. I had to open it. And I see the IQ score. And I saw 77. I couldn't sleep last night because I started spiraling in my head like, what is that going to be for her future?

Jessica Shaw: This is Melena Blanton. She's a mom in a small town raising two neurodivergent kids. The night before we spoke, she'd gotten the results back from her daughter Emily's psychological evaluation. She was glad to see that the emails said Emily had ADHD and dyslexia. Maybe that could help unlock services at her daughter's school. But the IQ score, that was a different story.

Melena: Now, I think there's brilliant people out there with 77 IQs — like I would never think of it that way. But my child, you know, the one that I see those big beautiful brown eyes, and I know how school systems judge anyway. So now, do I give the school that report with that 77 on it?

Jessica: Emily is only seven. While 77 on this IQ test is not a reflection of how well a kid can learn, nor is it a roadmap for what they'll be able to achieve in their lives. Plus, these tests can be unreliable for kids with dyslexia and ADHD if they don't have accommodations.

Melena knows all this. She's a clinical psychologist and works as a probation officer for high-risk kids. She has a background in education and psychology. But she also has years of experience struggling and sometimes failing to get her kids help in her small town in Eastern Kentucky.

Melena: I called my mom. My mom's a retired teacher. She's my best friend in the whole world, and I was like, "Mom, what do I do?" And she said, "Oh, you cannot give that report to that school. I don't want her labeled in first grade, because this child has all the capabilities to be — she's a brilliant child."

She's so excited that there's butterflies hatching in her classroom, and the life cycle of a frog she can tell you all that. And mom does not want her labeled as being unable to learn. My mom has been the type that's seen the child labeled in her years in the classroom. She's probably been a teacher that's labeled, unfortunately, a child just by what she sees on a test score. That's the prejudice that lives in small towns.

Jessica: Our society does not make it easy to raise neurodivergent kids. It's hard to get school support, and the whole process can feel very isolating and lonely. Even in a city of eight million people in New York where I raised my kids, resources may not have been easy to access, but they existed.

Melena lives in a town of around 4,000 people. She loves her home, but a lack of public resources and sometimes a lack of understanding have at times pushed her to the breaking point. Still, with grit and determination, she's had some remarkable successes.

And she's built a strong community along the way, made up of parents like her coming together to make sure their kids get the support they need and deserve. I'm in awe of the lengths these moms will go to for their kids, and I'm so excited to share with you my conversation with Melena about what she's accomplished and what still keeps her up at night. This is "Everyone Gets a Juice Box". I'm Jessica Shaw.

03:18 Melena shares her struggle to get reading support for her son and the negative interactions she had with school administrators.

Melena: Well, Eastern Kentucky is a very unique place. It's a beautiful place. We have a lot of collectivism with families. We love each other here. I traveled a lot in college, but then I moved back to Eastern Kentucky because that's what Eastern Kentuckians do. We move back to be with our family. But when it comes to resources, they're very, very limited.

Jessica: Melena's journey to access those resources started when her son Elijah was in first grade. He was falling behind in reading.

Melena: This is a child that I read to — I mean, my mom's a librarian. I mean, I read to this child thousands of books. So I thought, that's odd because the teacher kept saying, "Well, if you'd read more to him, maybe he would catch up."

Jessica: Always blame the mother.

Melena: Yeah, always blame the mother. So I thought, that's not correct. So — I'm a mouthy mom, thank goodness. So I went in there to talk with the teacher, to talk with the principal, and I said, "What do we need to do?"

And they said, "Well, let's just put him in special education and it'll work itself out." And I'm like, "No, I want him tested." This was an independent school system and they were like, "Well, we do not have the resources to test him."

He said, "Well, what if he ends up being the bag boy at Walmart?" He said, "That's not so bad." You know, that's my child. You know, I want him to be anything and everything he wants to be.

Jessica: And that's someone at school who's saying that?

Melena: Yes, that was a school administrator. So, it just shocked me because he said, "What were you? Did you graduate with honors?" And I said, "Well, yeah, you know, guess I did graduate with honors." And he said, "Well, what happened to the children that didn't graduate with honors?"

And I was like, "You know, I'm sure they're living their lives." He's like, "You're not concerned with those people because they're not worth your time. And maybe your son's going to be in that same boat."

Jessica: I just — it seems like that's such a — I hear that as so kind of judgmental and borderline hostile to say, like, you up on your pedestal who graduated with honors, you don't, you know — as if there's as if you need to apologize for that.

Melena: Right. And it was almost like I felt an attack like, "Why can't you just accept your child has deficiencies and let's just go with that?" No, I want answers. So I asked him to be evaluated through the school. They didn't have a school psychologist on staff that could.

So I took him to Lexington, Kentucky, which is about two and a half hours away. It was outrageous because they didn't accept insurance, but I didn't care. I would have remortgaged my house. I would have sold my kidney to get him his testing.

Jessica: The evaluation revealed that Elijah has severe anxiety to the extent that he pulls out his eyebrows and eyelashes in response to stress. It's a condition called trichotillomania. Elijah didn't get an official dyslexia diagnosis at the time, but Melena managed to get him into a dyslexia tutoring program. She also moved him to a new school.

Melena says Elijah has made huge improvements. He's reading at an 11th-grade level even though he's just in fifth grade. But getting the right support for his anxiety, that's been harder.

Melena: We have a 504 for Elijah for his anxiety. I'm always at that school, always advocating for them to make sure that he, you know, is treated fairly, that he's not pushed to the point of anxiety to where he's plucking his eyebrow out. I'm sure they hate to see me coming down there because I'm always like, "He's plucked his eyebrows. What's going on in this classroom?"

09:18 Melena discusses the lack of tutoring resources and her decision to train as a tutor herself to help her daughter.

Jessica: A mouthy mom, an advocate, call her what you will, Melena gets results. But it's taken a lot of fighting to get Elijah to this point. And Melena never imagined that things could get much harder until they did.

Melena: And not to flash forward, but when Emily — I started seeing deficits with Emily — a part of me just wanted to lay down and just go to sleep, because I didn't have the fight left in me this time.

Jessica: It's hard when you do so much and you're fighting the school and like you said, you're traveling for two and a half hours to Lexington, and you finally feel like, "Ugh, I can exhale. My kid's in the right school, he's in the right place." And Emily is what, like five years younger?

Melena: She's five years. And I don't want to say that I thought I was out of the woods or anything with all this, but I just always in the back of my head was like, "Oh, this is she's my easy child. This is I don't have to worry about all the stuff I had to do with Elijah." So I thought Emily will be fine. And then when the teacher pulls me aside and says, "She's not — we're thinking about holding her back."

Jessica: And what grade was she at that point?

Melena: First grade. This just happened with Emily.

Jessica: What were Emily's teachers seeing that made them, you know, kind of raise a flag to you?

Melena: Emily was presenting herself as being defiant. Like the teacher would say, "Let's sit down, let's get your work done," and she would not get her work completed. And she would hurry and scribble something down that was incorrect just so that she could move on to something else.

She was looking out the window quite a bit. She was failing terribly on her reading comprehension tests they do to see how many words per minute. She's just not showing any interest in reading at all. And I would try to sit down with her at home and she just — it was almost a defiance because she felt defeated before she even got started.

So I talked to the teacher and I was like, "Can you check and see maybe if it's a dyslexia issue, if it's an ADHD issue?" Because Emily's my active child. She's the one that always has to be hands in the mud, always has glitter everywhere. And I bought her a trampoline for Christmas just so she could flip and flop all the time because she's just all the time on the move.

And thank God for the teacher. This teacher is a godsend because she pulled me aside and said, "I do see some deficits here. And I do think that she needs to be tested."

Jessica: Even before Emily could get a formal diagnosis, Melena found her a spot in the same tutoring program Elijah went to. It's staffed by AmeriCorps volunteers, and they use a method of dyslexia tutoring designed to be taught by people without formal educational training. It's based on a tried-and-true approach called Orton-Gillingham.

Melena: So we get that set up and I'm so excited because I'm like, "Oh, the heavens opened up on my child, and I'm going to be able to relax because she's getting tutoring." Flash forward, January, they say, "Okay, we're going to set you up for online tutoring twice a week."

So we start logging in. The tutor never shows up. So we sit there — me with my anxiety — I sit there for 30 minutes waiting. She never shows up. This goes on — they keep giving me excuses, "Oh, you know, we'll get somebody else to tutor."

And then finally, I'm at work one day and I get a phone call and they're like, "We have no tutors. There's nobody to tutor your child." And she's like, "So, unfortunately, we're going to have to drop you from the program." And I'm like, "No, no, no, because this we're trying to get Emily back on track so she doesn't have to be held back. This is the key to get unlock her brain to get her to be able to read."

Jessica: And this is what you do! Like, this is what this program does. What do you mean you don't have anyone?

Melena: Yeah, they have more children than what they can hire tutors. So she's like, "I'm sorry." And I was like, "What can we do?" She's like, "Well, let me think on it and I'll get back to you."

So she calls me back a couple days later and she's like, "Okay, I've got a plan. If you can come down here and train as a tutor, it's a four-hour training. You come down, be a tutor, and then we're going to have this other woman train the same day. You're going to tutor her child, she's going to tutor your child."

And I'm like, "I can't do that. I'm working 40 hours a week. I'm on call. If a child gets detained, breaks the law, I have to be there. Like this is too much." And she's like, "Well, if you don't, your child's not going to get tutored and this other child's not going to get tutoring either."

So my mom and I, I take off work one day and we sit in for four hours and we learn Book One and Book Two of the Susan Barton Orton-Gillingham with this other mother. She's a yoga instructor. Oh my gosh, this woman is wonderful. Like if I — her name is Zoe. If I could put her in a box with a bow and just keep her in my heart forever I would, because this woman's been such a blessing.

I tutor Zoe's child, which is the sweetest child on earth. And then Zoe tutors Emily. And we do it back to back. It's been a lot. To tell you that I dread Tuesdays and Thursdays is the truth because that's a lot of weight on my shoulders. I've never tutored a dyslexic child.

And their minds are so phenomenal. Oh my goodness, I've learned so much about the brain with this program. But it's just something that we've had to do in Eastern Kentucky because there's nobody that will — that can tutor my child. I mean, you know.

Jessica: When you were learning for those four hours, did you feel like and do you feel like you have a grasp on how to tutor Zoe's kid? And do you feel like she has a grasp on how to tutor your kid?

Melena: Well, I mean, Zoe's doing an excellent job. I wouldn't want to say that, but I feel like we doing the best job we could. Absolutely not, because we're all new in this.

But if love gets our children anywhere, we definitely have that going for us. I mean, but it it's a sad situation and I could hire somebody out of, say, Dallas, Texas, that could meet with Emily online and tutor her.

But then I worried, "Okay, would the connection not be there?" I wanted somebody locally with the same dialect and the same accent and same — because it is hard to understand us, and you're talking on a computer trying to enunciate sounds and words. And I have to watch that child's mouth. Someone from Dallas, Texas, might not get the dialect of Eastern Kentucky. So that was another hurdle that I thought about.

Jessica: Has there been a specific lesson that you feel like has been, in your observation, the most effective?

Melena: When it comes to learning — like, the Susan Barton program and the Orton-Gillingham and all that stuff is so foreign — like it's like almost like trying to learn a foreign language. Because I cannot understand what they're doing a lot of times in my mind, but I see how it clicks with a dyslexic brain.

And so I know there's benefits there in the program. But it's an odd — like they do a lot of visualizations, they do a lot of, you know, "Close your eyes, you're walking into a supermarket." So I can see how it works with children. It's just being able to see it from the inside has been a blessing but also it's been a huge job to take on that I was not prepared to do.

Jessica: Yeah, because you're probably working a full day and then working a full evening and then parenting.

Melena: I'm tired. I'm really tired. Well, there's been times where I've been driving to work thinking, "I can't do this today." But guess what? You got to pull up your big girl bloomers and you got to — that's an Eastern Kentucky term — pull up your big girl bloomers and you got to do it because Emily's got to be tutored.

And so does that other child, because Zoe needs her child tutored just as much as I need my child tutored. And, you know, we're a team and we have to do this. But what where are those parents out there that don't have the help and the education behind them and the advocacy? I mean, because it takes a lot to fight. I mean, I feel like my life is a constant fight. And it's a constant struggle.

But that's what being a mom is. But some children don't have the fighting moms, and some moms don't have the effort — they don't have the energy to fight. And that breaks my heart.

15:57 Melena reflects on the supportive community of mothers she's found in her small town despite the lack of public resources.

Jessica: The fight shouldn't be all on your shoulders.

Melena: But that's Eastern Kentucky. And I think that's why when you look at our poverty rates, and you look at our unemployment rates, that's why we have such a high rate of drug addiction. And, you know, people on, you know, social programs and things because education is not pushed very hard.

A lot of people I work with, they're the first time — they're the first people in their families that attend college. Eastern Kentucky's an odd place. Yes, it's beautiful. Yes, we've got beautiful animals and horses and we're good people, but when it comes to resources, it's sad. Very, very sad here.

And I watched one of your shows where someone decided to homeschool their child and I was just, "Oh, my hero." Like that would be my dream to get to homeschool my children. But, you know, that's not our lot in life. I mean, my husband and I both have to work. We both work for the state.

Eastern Kentucky, we're very poor. I hate to say that, but, you know, we don't make very much money. And so I have to have my children in public school. But, you know, I've thought many times I'm going to jerk Elijah out because he's the sensitive one and I'm going to wrap him in bubble wrap and he's going to be okay.

But then what happens when he's an adult and he gets the difficult boss? And he gets the difficult neighbor? And he gets the difficult college professor? So I feel like I am preparing him a little bit for the roughness of the world. But it breaks my heart.

Jessica: Through all this, there is a silver lining. And that is the community Melena has formed with a few other mothers who are in this with her — like Zoe, the yoga instructor who tutors Emily.

Melena: I have so much love for Zoe, and this was a stranger to me in January. And the world put us together and I don't speak with her outside of tutoring because, you know, we have busy lives. But I have a bond with her just the care that she gives my child in those tutoring sessions and the care that I give her child.

Like, we truly love these children. Zoe's a lot younger than me. So, I think she's in her late 20s and I see the desperation on her face, especially when her daughter's not focusing. Like last week was really rough with her daughter because she's got a cat named Gumdrop, and she'll have Gumdrop up in the video like dancing.

And I'm like, "You have to focus. Let's get this done." I could see the frustration on Zoe's face like, "Pay attention." And I was like, "It's okay, Zoe. We're going to get through this together." And when I calmed with that calming voice, that calmed her down. And we just we're a team.

Emily has a phenomenal teacher. And she gave another parent that's struggling — another child in the class — she gave the mother my number and said, "You need to talk to her because she's doing the same thing with her child that you're going through." So I've been talking to her via text message and kind of pointing her in the direction of getting evaluation.

And I've formed a bond with her that this it's a sisterhood. Like, we've got to get these children raised and we can't — it's almost like a an army of moms. No one falls behind. And I want to say that's the Eastern Kentucky beauty of it.

Like, I don't know if you live in New York if you get a sisterhood like that, you know, because every it's such a big place and things. But here, like I mean, I'll do anything I can to help that mama get through because I needed that mama when I was getting through.

Jessica: Yeah, you make it work. I mean, there's something very — I wish you had all the services in the world and it sounds like you have cultivated, you have built this community also that you have each other's backs and that you're all fighting for your kids and for each other's kids. And there is something so powerful in that.

Melena: This is your child and you have to fight. You have to fight for this child to have the best life. And it's all when you look at it, it's all love. That's all it is. We love our children so much that it's going to be hard, but we're going to get through it. And that's beautiful to me. That's the most beautiful thing in the whole world.

It's sad. But it's also beautiful. My grandmother was a quilter, a fabric, you know — she made quilts for a living, as something Eastern Kentucky. And in my mind, everybody is the fabric of our quilt. Zoe's the fabric of my quilt, her daughter is, you know — all these people, you have been a fabric in my quilt. And that's just so beautiful — like just to have that meaningfulness of life. Because that's what life's all about is what's your quilt going to look like in the end.

Jessica: Many thanks to Melena Blanton for sharing her story. If you want to hear more conversations like this one, follow the show so you never miss an episode.

Thanks for listening to "Everyone Gets a Juice Box". The show is hosted by me, Jessica Shaw. It's produced by Julie Subrin, and Anna Rothschild is our senior podcast producer. Video is produced by Max MacKenzie and edited by Lance Johnson. Our associate director of content development is Calvin Knie.

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. That's it for this episode of "Everyone Gets a Juice Box". Subscribe or follow the show so you never miss a conversation. And send this one to someone who needs to hear it.