Bringing awareness to dyslexia

The signs of dyslexia are often overlooked. And there’s so much parents of kids of color can do to advocate for the right support for this learning difference. Our guest is Dyslexia Mom Boss host Lauren McClenney-Rosenstein, EdD. Listen as Dr. Lauren explains:

• Her own personal experience with learning and thinking differences

• What parents need to know about Orton–Gillingham

• Ways parents and schools can work together to help kids of color thrive

Related resources

• Dr. Lauren’s podcast, Dyslexia Mom Boss

• Dyslexia basics

• What is Orton–Gillingham?

Episode transcript 

Julian: 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. 

Welcome back, listeners. So, on today's episode, we're talking about a learning difference that impacts many people, dyslexia. October is National Dyslexia Awareness Month. Joining us for today's conversation is Dr.  Lauren McClenney-Rosenstein. Dr. Lauren has been a certified special educator for ten years. She's also the CEO and founder of Think Dyslexia, and she's also the host of "Dyslexia Mom Boss" podcast, a podcast that explores mom guilt and understanding the special education journey. Please help me welcome Dr. Lauren to the show. Woohoo! Welcome. 

Lauren: Thank you, Julian. And it's exciting, first of all, to be on this podcast. And I love Understood. I always use Understood as a resource. So, this is just like such an honor to be here. So, thank you.

Julian: Dr. Lauren, I really appreciate you being here. One of the things that we always try to start off with is, you know, just kind of talking with each other, get to know each other, because we're going to dig deep into some more issues. But this morning, I got up and I'm in the bathroom brushing my teeth and I hear my daughter at 5:45 a.m., and this little girl, Amalia, eight years old, she is fully dressed. She has her hair done. She has her shoes or socks on. And she has her yoga mat. And she says, "Dad, I just had to get my yoga in before school. I'm ready.". 

Lauren: I love that. 

Julian: And I looked at her like, "Girl, why are you awake at 5:30 in the morning doing yoga?" And so, when I think about what's giving me life right now, the fact that my daughter understands how important it is to center herself before school starts. I mean, I say all that to ask, for me, that's giving me life. I want to know about you. What's giving you life right now? 

Lauren: That's a really good one. You know, I might have to continue on the parenting train. So, my youngest daughter is five and a half and just day two of kindergarten sending her off and all my little sweet girls growing up, and she's wanting to get on the bus and just doing her thing. And my daughter actually has a little meditation mat where she will sometimes pull it out and... 

Julian: Oh wow! 

Lauren: ...before bed and say, "Mommy, I just need to take a minute to breathe." Yeah, I think that probably is giving me some life today because that's fresh in my mind. 

Julian: That's what's up. That's what's up. So, let's get into it. You received a late ADHD diagnosis, is that correct? 

Lauren: I did. 

Julian: Would you be open to telling our listeners a little bit more about that journey of how to get diagnosis and how that happened? 

Lauren: It's funny because I'm always an open book, but I think there was a lot of shame around this, and it really wasn't until this summer was when I started sharing my story. But I was a psychology major undergrad, and I think the reason I was so attracted to psychology was I wanted to understand the human brain. I wanted to understand human interactions, like why are people the way they are as in nature versus nurture? Like, what's behind all of that? And I always struggled in school and I didn't really know why. I was always in trouble. I was always the social butterfly, you know, all these things. And, you know, it wasn't until I was in this abnormal psychology class and I saw like all the signs and symptoms of ADHD, and I was like, "This sounds like me. I wonder if I have this.". 

And so, I'm the kind of person where I just want you to tell it to me straight. So, I marched down to the local psych center on campus, you know those grad students doing all the testing for the college kids, and I got that diagnosis, right? I was just like, "Oh, this is great and I know what it is. And then I was like, 'Wait, what is this? Why didn't I know this?'" Like, all this. And, you know, there was a lot of shame around it. Like, I had to get some feedback from my parents because there was stuff they needed to have input on when I was a kid. And I think that they were kind of like, "What are you doing? Like, Why is this happening? Like, what's going on here?" So, I went and I did what most people do, which is get on medication. And it was awful for me. So, I was a Division one athlete at Syracuse. I ran track and that was my job to run track because I was a scholarship athlete. Well, this medication I was on was awful. I was losing weight, I was eating like a football player, I lost my personality. But I got to tell you, the only good thing was I made honor roll for the first time ever in college. And I was like, "This isn't worth it." So, I got off the medication. And then I just thought it disappeared. 

Then I explored education, and that was when I went into my master's program — I wanted to explore elementary ed, but special ed was really what grabbed me. And I think it was because I struggled. And so, when I was in these special ed placements, or even really any placement, any kid that struggled, I was like, "I'm there. Like I know it, I can help you." And that was what drew me in to the neurodiversity, but I didn't know that. I literally stumbled into dyslexia, the world of dyslexia. I'm not dyslexic. Most people that follow my work are like, "What's your dyslexia story?" I'm like, "Don't have one." I was like, "I don't have one. My kids aren't dyslexic, as far as I know. I don't have any family members that have admitted that they're dyslexic. I just was trained in Orton Gillingham and to know how to work with the dyslexic brain.". 

And so, for years I would coach parents and kids and teachers into this like mindset of like, "Well, this is how you have to differentiate. This is how you need to understand that we all learn differently." And all the while, I wasn't really serving myself. That's when I really had to look at myself in the mirror and say, "All right, I got to do something with this ADHD, because when it goes 15 years without treating it, there are repercussions to that." That's kind of my story in a nutshell. 

Julian: I'd love to know more just in general about how Think Dyslexia came about. Like, tell us more about that. 

Lauren: So, it was January of 2020. I was working at a nonprofit whose mission was focused on inclusive education, and really we provided technical assistance to districts, schools. And I just remember sitting in this office just bored, you know, because I have ADHD and I'm like, "I'm so used to bouncing around and going to different classrooms and I'm supposed to sit at a desk and do research." So I said, "I need to do something." So, I started an Instagram account and, but my vision was, "I'm just going to put out all this information that's in my head on social media. Who knows where it's going to go". And so, I started with the old school whiteboard posts with like fun facts about dyslexics and, you know, that really picked up. And then later on, I started doing cam reposts and then lives, and then it turned into this whole kind of research project where I was finding people around the world, sharing their dyslexia story, talking about dyslexia in Egypt, in Oman, in India, in Norway. And Think Dyslexia was really just a resource. It was a place where parents would find the resources. I mean, I had moms who were in my coaching program that were like, "You were the first account that saved my life." And I'm like, "I saved your life? It's like, What do you mean?". 

Julian: Got it.

Julian: And so a podcast came out of this, correct?

Lauren: It did. So, my vision was, well, actually I should say this, my account was shut down twice. And, you know, for whatever reasons, Instagram's issues are with that. I needed a platform where I was my content and it couldn't be taken down or taken away. So, that's when I said, "Well, how do I do that? I'm going to create a podcast." 

Julian: I'm just fascinated that you were able to take this social need, like society needed more information about dyslexia and you've been able to transform it into multiple platforms. And so, I think it's just really cool that you've been able to do that. I want to pivot to the idea of students and children and their rights. We're both parents and we can confidently say that nobody fights harder for a child than their parent or their parenting adult. These adults that are in children's lives, they really just want to see the kids thrive in whatever they choose to do. You know, whatever they decide, they just want to see them do well. And so, I'd like to ask specifically for those parenting adults of children of color, because we really focus on the opportunity gap of children of color and their experience. Why is it so important for them specifically to advocate for their children? 

Lauren: If you go back to the start of this country, OK? And this is a little quick history lesson. Like it wasn't a right or it wasn't a law for kids to go to school. And so, I think if you think back to the beginning of time where it really wasn't a law for kids to go to school because of agriculture and farming and all of that, it was more of a luxury then, of course, it's not going to be honored for people of color. And so, I just feel like this is a systemic issue. Also in the Black community, I think it's twofold. We don't always talk about disabilities, and when we do, there's a lot of shame and guilt around it and there's a lot of, "Oh, well, that's just so and so on and he figured it out when he was ten." And it's like, no. 

But the other issue is that there's resources that just aren't accessible. There are things in just the brown and Black community, we just don't know what we don't know. So, it's a lot easier to put that energy somewhere else or to come off if you come to the school as the angry Black mom, because you know there's something wrong with your kid, but you don't know how to advocate, right? Because you don't have the words or the resources to say, "I think this is what's happening." So, you have to take a look at who's teaching our children and whether they realize it or not. There's the biases that they have, the microaggressions, the, whatever it is, where it's ingrained in us. 

Julian: I'm interested in knowing some of the experiences you have with the families you work with. I'm curious, like, what are you seeing about our experiences? And I say "our" as in those of us that are people of color. 

Lauren: That's another great question. So, in terms of my personal private practice business, most of my clients are white. 

Julian: Interesting. 

Lauren: Yeah, and I think it is...how do I word this? It's an economic issue and it's also a lack of knowledge. 

Julian: And can you explain what that is for the reader? And you had mentioned that earlier. You know, those of us that are not in the business. Explain what that is. 

Lauren: Orton Gillingham is a buzzword now. Orton Gillingham, two people. Samuel Orton, was a neuropsychologist, and Anna Gillingham, I believe, was a speech-language pathologist. And they, this was like over 100 years ago, OK? And they understood the neurodiverse brain, the dyslexic brain. They understood that there had to be a multi-sensory approach to teaching these children to read. Most people think that kids just know how to read, and that is not the case. There's so much brain science behind it and there have to be wires connecting. And if you have dyslexia and other language-based learning differences, things aren't firing and you have to do it a different way. So, I was classically trained through the Orton Gillingham Academy. And what that means is you have a fellow, you do a certain hour of coursework practicum and you have to apply to get into the academy. So, there are many levels of what Orton Gillingham can look like. And so, if you're a parent out there and you're like, "Oh yeah, I got an Orton Gillingham tutor," you need to vet them. You need to say, "Did you go through the academy? Who was your fellow?". 

Now there are other certifications that are just as credentialed. But I think the thing is, is that when you have a true dyslexia therapist or an Orton Gillingham-trained practitioner, it's very expensive. And it's expensive because — and you'll understand this, Julian, because you're an assistant principal — there's no curriculum, OK? This literally requires you to know the child and take your skill set of being — because I'm also an educational therapist — of bringing that sound approach. So, if, like, I've worked with middle schoolers that can't really read, I'm not going to start off with Shakespeare because it's eighth-grade content. We're going to get to the nitty gritty, roll up the sleeves, and if you don't A apple, that's where we're starting. Obviously, you have to make it, you know, appropriate and protect their ego. But Orton Gillingham or as I said, other dyslexia therapists like we do the work and we know that we individualize what that child needs.

And so, I think when you bring that to our community, there's just not a lot of knowledge around that. And then I think in general when a parent is like, "Oh, well, I need what you have and my kid can't read and, you know, I don't know what to do," but then you hit him with the ticket of "Here's how much this costs," then that can, that sometimes presents to be a problem and it turns into an economic issue. Like, are you middle, upper middle class? Can you afford, you know, X amount of hours? Because let's be honest here, you're not going to see progress unless you have a set amount of hours put in. 

Julian: Yeah, that's I mean, that's true across the board. And again, I see it at the administrative level where, you know, there's supports that are in place based on what people can afford and what they can't afford. And, you know, we do know that there are definitely schools that have fantastic reading intervention programs and early intervention programs. 

Lauren: Exactly. 

Julian: Where there's a process called MTSS, where people are able to figure out and diagnose and intervene immediately, whereas other schools and other school districts. For some of our listeners, you may be in a school or a school district that doesn't have a strong reading intervention program, and so your child might not get identified early on, or you might just have that gut feeling like "My baby just can't read as well as everybody else." And there's so much info out there so you don't know, "What should I pick? What should I do?" All I'm seeing are these things that cost tons and tons of money to do tutoring. And so, my question to you is, if I'm a parent in a situation like that, where I recognize there's not a really solid reading intervention program at my child's school, but I also, I can't really swing paying $300 a month for extra tutoring, right? What are some other ways that you would advocate as a coach, as somebody that's been in this a lot, how would you advocate for parents to represent their children and find a way to solve that situation? 

Lauren: First things first, you're listening to this podcast. That's a great place to start. I would definitely say check out my podcast "Dyslexia Mom Boss" and what is really important for a parent — and this is what I say all the time to parents — you need to educate yourself on what dyslexia is, you need to educate yourself on what language-based learning disabilities or differences are. And then the next thing I always tell parents is once you have an understanding of that, then you need to understand your child in that context. You can't just say, "Oh, this is what dyslexia is and this is my kid," because it's a spectrum. So, you need to understand the diagnosis or the suspected diagnosis. So, what I always recommend is if you think your child has dyslexia, go to the Mayo Clinic and type in signs and symptoms of dyslexia. 

Julian: The Mayo Mayo Clinic, OK good. 

Lauren: And what I love about it — I always reference this —what I love about it is it gives you stages. So, it gives you, what is it like... not birth, I think it's like two. They call it before school age. So, it's probably like right around the time where kids are starting to develop language to about four or five, and then they have school-aged, which is kindergarten to fifth grade, and then they have teens and adults. And so, if you are an educator, you're looking at this and you see the developmental stages of like, oh yeah, by the time they're in middle school, they should be doing this. By the time they're in high school, they should be doing this. Well, it gives you an extensive signs and symptoms and that is a great way for you to do an informal screener online to be like, "Oh, tick, tick. I think this might be an issue." Now, getting the actual diagnosis now that can be challenging. You know, if you're in public school, you have to have a reason to bring this to the table for your child to even get supports. 

Now, Julian, you touched on MTSS, and that's a whole different episode and a whole different conversation. But if your school is doing things in the right manner, your child should be receiving Tier one and then Tier two and then Tier three, and then if they're still aren't getting the results they need, that's when they can possibly be up for special ed, which means that's when they can possibly be tested. Problem is, is that takes time. And so, this is where money comes into the situation where "I'm going to go get a private psych evaluation. I'm going to go find somebody because I know there's something wrong with my kid. And my kid needs that support." So there's so many different things where eventually money does come into play. But I think the free tips are the podcast, the Mayo Clinic, go to the International Dyslexia Association. There are a lot of resources there. I would say start with that with the, you know, low-cost things. 

Julian: Great, great. I mean, everything that you said is to access like, that's the most important thing is really understanding that it's not incredibly difficult to access, it's taking the time to do it. Now, I will say, you know, parents or parenting adults, if you feel like your student or your child is not getting the interventions that they need, then ask for a list of interventions that are being used in school. It's as simple as that. 

Just make sure to ask, "Hey, what's happening in school in terms of interventions? I feel like I have concerns about my child's reading ability. Can you tell me some things that you've tried?" That's a really easy first step, and then you can ask about MTSS, like we mentioned. And then you can ask the school "What are some other suggestions or resources you might have for supporting our child with their reading because we really want to help them. Can you give us or provide us with information?". And I will say that nine times out of ten you'll be able to at least get something from that. And from the administrator lens, if a parent comes in and is asking that, then I know "All right. We got to make sure that we're providing, because they've done their research, they've done their homework, they're ready. Let's make sure that we get that going for them."

Lauren: Yeah. I would agree. 

Julian: One last question. Just thinking about similar conversations with schools. And again, I'm going to take the administrator hat off and I want to hear from you as a mom. 

Lauren: Sure. 

Julian: What are some ways that you think parents or parenting adults can build stronger relationships with schools? 

Lauren: So, I'm going to give a quick answer, but then I'm going to explain why. I think being vulnerable is a really huge part to building a strong relationship. 

Julian: Say more about that. Being vulnerable. Say more about that. 

Lauren: Yeah, we're all human, right? Julian, You wear that administrative hat, but you're also a dad. You're also a man. You're also a husband. You also get sick. You also get sad, like we're human. I strongly believe and I'm speaking from personal experience. You cannot communicate effectively or have healthy, positive relationships if your nervous system is not regulated. So, when you are all the time stressed all the time worrying about this anxiety-filled and coming from a place of like, my kid needs this, like you're irritable, you're not easy to talk to you, you're not listening.

And I think that parents need to understand, "If I can regulate myself and just say I'm really lost, I don't know how to help my child, can we do this together?" I think that's where you have that like, that's where the rubber meets the road. That's where teachers are not defensive because teachers will come to the table if a parent is, because I've seen it, a parent is yelling at them like, "You didn't do this, you didn't fill out the IEP. My kid is behind."  And the teachers are like, "Whoa, I got 35 kids in here. I don't even have time to pee." And it's like, this is not productive. 

Julian: You're right, it's too much. And I think really making sure you try to put your self in the eyes or the perspective of the other party is really important. As the teacher, try to understand where the parent is coming from, and as the parent try to understand where the teacher's coming from. That helps things go a really long way. Well, Dr. Lauren, we could talk all day long, and I really, I appreciate it. I love your energy. I love your story. I love the work that you're doing. 

Lauren: Thank you. 

Julian: The fact that you're putting yourself out there. It's been a fun conversation. It's been very insightful, especially for me just on dyslexia and some of the work that you've done. Listeners, before we go, as always, I have some really helpful resources to share. I'm going to share them in a second. I just want to one more time, say thank you so much to Dr. Lauren. Come back again at some point. We have some more conversation to have. 

Lauren: Definitely. 

Julian: So, listeners, some resources. One, check out Dr. Lauren's podcast. I've listened, is pretty solid. "Dyslexia Mom Boss." "Dyslexia Mom Boss." Also, she gave us a really good tip to type in Mayoclinic.org. Check out The Mayo Clinic. If you have any questions about dyslexia, you can get some levels around or what you're seeing and symptoms and it's really informative. You can also, obviously, learn ways you can help your child with dyslexia from Understood.org. That's right. Understood.org. It is top of the town. We do it right over at Understood. Then also hear why this doctor says she would never want to be cured of dyslexia, even if she could be, in an episode of "In It," one of our sister podcasts on Understood. Listeners, we will talk and listen soon. Thank you for joining "The Opportunity Gap." Ciao! 

"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. See you next time.