ADHD and dyslexia, and the reading anxiety that comes with both (Carol’s story)

Growing up, Carol Blumenstein was labeled an unteachable student. She was terrified to read during class, and school only brought huge anxiety. Luckily, her mom believed in her in a way teachers didn’t. She put Carol in community college courses and pushed her to turn her frustration into motivation.

Carol didn’t know she had ADHD and dyslexia until she saw her own children — all five of them — struggle with the same things she did when she was little. But this time the issues were addressed and they were understood by their teachers.

Now, Carol’s kids have founded their own organization, KidsRead2Kids, which provides free video audiobooks read by kids for kids and other helpful resources.

Related resources

• Video: Why do ADHD and dyslexia co-occur so often?

• Dyslexia and anxiety in kids

• ADHD and anxiety

• Carol’s family’s organization, KidsRead2Kids

Episode transcript

Carol: I remember I had a math teacher who was convinced that math was my worst subject. And my mother thought about it, and she's like, "That's ridiculous!" And so, she actually put me in computer programming when I was about 12 years old. And lo and behold, I was the best in the class. And I was a little kid and I was with college students. 

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 am here today with Carol Blumenstein. Carol is the executive director of KidsRead2Kids. KidsRead2Kids is an organization that provides free video audiobooks read by kids for kids, along with lesson plans and other helpful resources. You can find more information at KidsRead2Kids.com. 

I also need to mention that Carol is the mother of five kids. Five kids who have learning differences — like dyslexia and ADHD — and her kids are the founders of the organization, which is so cool. Carol, welcome. Thank you for being here with me today. 

Carol: Laura, thank you. I am so happy and honored to be here with you. 

Laura: I'm amazed that you even have time to talk to me today, Carol. 

Carol: You know what? Very good time management. 

Laura: Carol. So, like your kids, you also have learning and thinking differences. You yourself have ADHD and dyslexia. And I have to say that, this is actually the first time on our show that we're going to specifically talk about ADHD and dyslexia, that co-occurrence, which really surprises me because it's so common for the two to co-occur. 

Carol: Right.

Laura: I know you love to talk about your kids, Carol — which I think is so gorgeous — I'm first going to ask you about you, and what's it like for you to have both ADHD and dyslexia. Maybe through a specific example of how it impacts your daily life. 

Carol: OK so, you have to remember stepping back when I was growing up, there really wasn't testing for any learning differences. So, growing up I did not have a formal diagnosis. It just simply wasn't done. You are pretty much branded as somebody that was too slow, was distracted, didn't seem to care in school. I was considered a poor student, unteachable. All of these sort of labels that are never helpful and most likely are usually very wrong. 

Fortunately, I had a mother that understood my strengths, my gifts, and she was really able to help me become the person that I am today. School was very difficult for me. I couldn't read. I remember being the kid where — I don't know if they still do this today — but you would sit in a circle and the teacher would pull out a section that we were going to read in class. 

And paragraph by paragraph, you'd go around the room and each person would read the next paragraph. So, what would happen is, I would count up frantically, "OK, I am the ninth paragraph." And I would frantically look and all I would do is focus on the ninth paragraph. I didn't hear a word that anyone ever said. I was so terrified and so afraid of humiliating myself when it would come to my turn, that all I could do was focus that whole time on my paragraph, and then pray that nobody would get up to go to the bathroom. 

Laura: Oh my gosh, that sounds really stressful, and there's so much anxiety for such a young person. 

Carol: So much anxiety. 

Laura: I've heard a lot from our listeners who talk about having ADHD, and as far as I know — well they may or may not have also had dyslexia. It wasn't a topic of specific discussion for us for those interviews — but what comes up a lot in relation to ADHD is difficulty focusing on the reading. So, I can only imagine when you have both dyslexia and ADHD, how doubly difficult and the immense reading anxiety that can come with that. 

Carol: It's not only is it anxiety, but the reality is there is no fun. It is exhausting. It is challenging. It is stressful. When you're reading that slowly, oftentimes it's actually really hard to even comprehend what you're reading, because by the time you've got to the end of that page, you've completely forgot what you read at the beginning. And so, listening comprehension, reading comprehension is really important to help children with dyslexia and ADHD. 

And one of the ways that really helped me is — when I was growing up, I did not like to read at all — but my mother used to read to me all the time. And what she did was something absolutely brilliant, and back then there was not a lot of resources. But instead of picking a book she thought I should hear, she would pick books that I wanted to hear. 

She understood that learning should always come from within, and she knew that if she could motivate me and get excited about learning, I would want to learn. And if I wanted to learn, nobody was going to stop me. But if I didn't — if I felt discouraged, if I felt frustrated — if I felt like where I was to where I wanted to be so far that it was "What was the point? I'm not even going to try." My mother knew. No, she had to turn my frustration into motivation. 

Laura: Your mom is, she just sounds so incredible. And of course, not all kids have that same kind of — what's the word I'm looking for? — like parents who understand how to cope. But often by no fault of their own, don't know how to cope with their kids' challenges.

Carol: Right, and my two older sisters, they just flew through school. They were straight-A students. They were incredibly smart. And my teachers would look at me and say, "What is wrong with you?" And I remember I had a math teacher who was convinced that math was my worst subject, because I couldn't regurgitate the multiplications, divisions really fast. I just couldn't spit them up fast enough. 

And my mother thought about it and she's like, "That's ridiculous!" And so, she actually put me in computer programming because she said, "You know, you really think like a computer. You're very logical. And I think that math and physics is actually going to be your best subjects." So, I enrolled in at a community college and I started studying, and lo and behold, I was the best in the class. And I was a little kid and I was with college students. 

Laura: How old were you in these classes with college students? 

Carol: I was 12. 

Laura: Oh my gosh. 

Carol: Yes, it's shocking. But the thing is, that's how my mind works. I'm a very logical person and I also am an extremely creative person. And what my mother realized is that oftentimes you're like one or the other, but I always actually both. I was just as comfortable in the art classes and the dance classes as I was in science, physics, math. 

And she started putting me in these classes. She started reading to me books that I was so fascinated with, and she started showing me careers that I had never thought about, that I never dreamed I could do. And all of a sudden I was like, "Oh my gosh, I want to do that." And then when I came back to classes, I was more motivated. I understood what I learned, what I did well in, and where I needed help. 

Laura: So, you didn't have a name for what you knew what you were strong at. You knew what was harder for you. 

Carol: Right. 

Laura: When did you...? I guess what I'm asking about is... 

Carol: My "aha" moment for me? 

Laura: What was your "ADHD Aha" moment, right? When did you — and we can talk about dyslexia too — when and how did you learn what was the root of your amazing brain? 

Carol: It wasn't until, full circle, I had five children and it started all over again with them. The same thing. Getting those notes back from the teachers. "Your child is a disaster. They don't pay attention. They don't care. They're not trying." And meanwhile, I knew they were running a marathon every day. They were working their hearts off, and everything took every ounce of energy for them. And I couldn't understand. 

And they were so smart and so intelligent. But then they would get, like, zeros on a math test, and I'm like, "How did you get a zero on a math test? I know you know this." But they were timed. And so, by the time my son would literally write his name, he would get a zero and then the teacher would be like, "You're bad at math." And I was like, "Oh my God, that's what happened to me!" And it turns out math is one of his best subjects. 

But again, they were using the wrong parameters to judge my children's strengths and weaknesses. And I didn't know much, but I fortunately had this wonderful teacher who said to me, she's like, "You know, Carol. I think your children should be tested." And I'm like, "Tested for what?" Because back then again, I didn't know. 

Laura: Right, right. 

Carol: I didn't have a support system. I didn't have moms coming to me and saying, "Oh, hey, here's all these resources. Let me help you." I didn't have anyone help me. I had moved to a new city to get married. I wasn't from the area. I wasn't, you know, in with everybody. And I was very much alone trying to figure this out on my own. My mom was sick. She had Parkinson's. So, I was taking care of her. And I had five kids to try to take care of and take care of my mom, which, thank God, I loved every second with my mom, believe me. 

But, when my kids started getting tested and we started realizing — because I would get dyslexic, ADHD, borderline autism, a selective mutism, anxiety, dysgraphia — all of these things have flooding in. And I was like, "Oh my gosh." And you start reading the reports and you're like, "Oh, that's me. Oh that's that, oh that's me. Oh, that's really me." 

Laura: What did you do when you discovered there might be a name for what your experience was? 

Carol: I was actually really excited about it. Believe it or not, I think that when I realized what it was, it wasn't so scary anymore. Because at first, I just thought something was wrong with me. I was always like, "Why is it so easy for my sisters? Why was everything so hard?" But after I was diagnosed and I realized that I was like, "Wow, I'm actually really grateful." 

Because, see there's one thing that I have that a lot of very intelligent people who do not have learning challenges don't have, is that I have this ability to keep working and not expecting everything to just go smoothly. I expect It's going to be hard. I expect it's going to take a long time. I expect I'm going to have to go through many, many, many iterations before I get it right. 

And so, I'm not as frustrated anymore. Because I kind of realize, for me to get from here to here, it's going to be a bumpy road with a lot of potholes. And I'm going to go slow. And I don't care what race car I'm driving, I got to go slow. And so, and I'm OK with that. In fact, my kids and everyone calls me "the turtle." And I say proudly, "I am a turtle." I go slow and steady and I love to learn. 

Laura: I do want to ask. You have five kids. Which of your kids' symptomology, challenges, strengths, do you feel like spoke to you the most in terms of like, what you are strong at and what you struggle with? 

Carol: So Alana, my second older, had selective mutism as a child. So, selective mutism is basically a fear of even speaking in public. In other words, you just hide. Your anxiety is so great, that the head is down and you just pray "Please don't talk to me. Please, just don't even notice that I exist." It's just such an unbelievable fear. 

I was very much the same way. I did not speak. So many of my parents' friends really didn't think I did speak. And yet at home, I never stopped speaking because I felt very safe and very secure at home. But it was just such a fear. And I remember my mother put me specifically in Russian ballet. She put me in theater because she realized that when I got out of thinking about myself and just got a part of a repertoire, a part of a group, I could become one. My confidence would build. 

And we did the same thing for Alana, and the same thing was so powerful. Because when you think about a theater troupe, it's very warm, it's very open and it's very family-like, it's a very safe environment. And so, what you're trying to recreate that sort of home life in other environments out of the home to help your child step up, to become comfortable in being themselves. And maybe for a child, it's a soccer team. It could be many things. 

And then my son Jacob was very much like me growing up. Severely dyslexic, very slow to read. His teachers would tell him math was his worst subject. You know, "Why are you even going for that?" You know. And yet, his brain was literally just like mine. 

You know, I put him in a computer program, which he just soars. His math is outstanding. You know, he uses all electronics now, you know, audiobooks, all of those sorts of things that are available to help him. And he went from a kid where they thought that he was never going to amount to anything. He's now in his final year at Ross, at the University of Michigan, and he's doing exceptionally well. 

Laura: Tell me about KidsRead2Kids and the inspiration and what you do at KidsRead2Kids. 

Carol: So, KidsRead2Kids is a 501(c)(3), Parents' Choice Award-winning nonprofit that my kids started back in 2016 because we saw that there was like this cycle that keeps continuing. Where I grew up and felt like there was something wrong with me, that I was broken, that I wasn't smart, that I was never going to account to anything based on what school was. And had I not had my mother, I don't know what I would be. Instead of having an MBA from Wharton, an electrical engineering degree, I could be who knows where. 

But I am who I am because I had somebody in my corner who really believed in me and understood that I had amazing strengths, and also realized that the weaknesses that I had, we could figure out how to work around them so that I could learn and be an independent learner for life. And then my kids came along and I felt like it was like deja vu. It was happening all over again. 

And my kids one day I said, "You know, we've got to do something, because there are kids around the world, there are parents around the world that don't have a resource to help. What can we do to help these kids so that they can become independent learners? They don't need to have a credit card. They don't need to have money. We need to teach kids that they can be independent, that they are in control of their learning, and we're going to teach them how." 

And so my kids decided they were going to start KidsRead2Kids, and they started by taking some of the greatest classic books that most children with learning challenges don't even read. They took abridged versions, which were less scary and easier to understand, but very important characters. These were all young characters that had struggles that they had to overcome. And they got their friends from theater and choir — many of which who had learning challenges themselves — and they filmed these books as a video-audiobook, chapter by chapter. 

Laura: So fun.

Carol: Which took, each book, is months and months. You have no idea. 

Laura: I can't, I can't imagine, actually. I mean, that's incredible. 

Carol: You know? And then my kids would edit it and get it all set. And we wanted it so that a child could go on to our website or go on to our KidsRead2Kids YouTube channel. They could listen to these books completely free. They didn't have to ask for permission. They didn't have to ask for money. And they're listening to other kids just like them. And all of a sudden, kids in over 60 countries started using it. It was amazing. 

And then Covid hit, and teachers were like, "Ahhh! what do we do?" You know, "How do we teach kids online?" And so my kids created two complete free lesson plans to "Anne of Green Gables," that my daughter Alana Read and "Peter Pan" that her friend Steven reads. And this has creative writing prompts, active listening questions, vocabulary games to really help kids learn how to actively listen. You know, we were born hearing, but we have to learn how to actively listen. 

Laura: Well, it's just such an amazing organization, Carol. I mean, the fact that your kids founded it, and just the entrepreneurship, the scrappiness, the creativity, the empathy that it takes to do something like that. I really commend you and your kids. 

Your story is just phenomenal. The website for everyone who's listening again is kidsread2kids.com. That two is the number two, not the word two. So, kidsread2kids.com. So Carol, thank you so much for being here today. It's just been a pleasure. I really appreciate it. 

Carol: Oh, it is an honor. And on our website, there's always a way of contacting us if you have a question or a concern. When I was raising my kids, I didn't have anyone to help me, and it's a really scary process to try to figure out what to do. And I don't want any parent to ever feel that way. So, same thing for kids. 

We are here as a resource. This is our passion. We love it, we believe in it, and we really, really want to make sure that no child, no adult feels like they're broken or something is wrong with them. You are perfect the way that you are. Find your strengths, and then let us help you to improve the areas that are hard for you. And it will make life so much easier and way more fun. 

Laura: 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.