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The Struggle to get Proper Instruction for Students with Dyslexia in New York City

Jessica Gould, Education reporter for WNYC and Gothamist, recounts one family's year-long battle with New York City's Department of Education to help their child receive the specialized instruction required while growing up with dyslexia.

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Brian Lehrer: Brian Lehrer on WNYC. I've been wanting to have our education reporter, Jessica Gould, on the show ever since her reporting on one nine-year-old with dyslexia managing the New York City school system came out and now we have a chance to do it. This is such great reporting. I don't have to tell you, learning to read is probably one of the most challenging obstacles that young children face when they first enter the school system, but New York City public schools in particular sometimes fail to provide the kind of instruction that children need to face this hurdle if they have special needs.

Some of you know that Mayor Adams ran on this. He talked about how he had dyslexia as a kid and the school system didn't serve him, and he set out to make it one of his goals to improve education for kids with dyslexia. Jessica decided, let's follow up on that. Let's follow up by telling somebody's really personal story, the story of one nine-year-old with dyslexia, and are things changing, and is the school system serving this child? She followed a family on their year-long quest to receive proper dyslexia-based education, and she joins us now to discuss their journey and what she learned. Jessica, such a worthwhile project. Thanks for doing it, and thanks for joining us.

Jessica Gould: Thank you, Brian.

Brian Lehrer: Who's the kid? How'd you pick him?

Jessica Gould: All right. Matthew Green, when I met him, he was eight years old. He's nine now. He's this very sweet kid, super earnest. He has a baby face, and some of his teachers have called him "Cheeks". He's been struggling in school for his whole academic career, but the schools as public schools have not for decades have not been able to serve him. They were not able to diagnose him as having dyslexia, and he fell farther and farther behind. He thought that was his fault, and he started acting out. There were times when he got really upset and threw chairs. The schools didn't really know how to manage him. He was given a teddy bear at one point just to comfort him.

His grandmother with whom he lives in Harlem took this on and she works nights in IT. She just spent every day fighting for him, contacting the school, trying to understand what was going on and ultimately was able to get a neuro-psych and discover that he has dyslexia. Then that sent her on this whole path of navigating this complex infrastructure that has developed outside of the school system to support kids with dyslexia because historically, the public school system has not been able to do it for most children with dyslexia.

Brian Lehrer: Maybe you should give our listeners a little dyslexia 101 for people who don't have it themselves or have no close contact with people with dyslexia. Maybe we think of it as a simple sort of reversing the letters in a word sometimes, or, what would go beyond that to do a brief "Dyslexia 101"?

Jessica Gould: I'll do my best. It affects between 5% and 20% of the population. The schools themselves have not tracked this over the years. We don't know how many kids in the New York City public school system have dyslexia, but think about 5% to 20% in a school system that serves more than 900,000 students. It has to do with differences in the brain. Yes, there can be reversal of letters or words, but really it has to do with difficulty matching letters and sounds.

You might notice that your kid has difficulty learning the sequence of the alphabet or remembering sounds that go with each letter, names of colors, or shapes. It has to do with how the brain is wired. There is a way to rewire the brain so that kids with dyslexia can begin to learn to read and read better. It's a very specific instruction. It's intensive, and it's not something that traditional public schools have in the past been able to do.

Brian Lehrer: I want to play a clip to further exemplify this of you speaking with Matthew. This is a moment where I guess trying to get to know him and his reading skills, you asked him to read something out loud to you and he didn't want to do it. We'll pick it up from there. This starts, folks with Jessica's follow-up question.

Jessica Gould: Tell me why you didn't want to read in front of me.

Matthew: Because I don't feel comfortable to read with other people.

Jessica Gould: Why? What happens when you read?

Matthew: I get frustrated because sometimes the words are harder to sound out in my head, and I shut down.

Jessica Gould: What does shutting down mean?

Matthew: I stop, I get an attitude sometimes. I start to cry sometimes because it's like struggling because my brain, it's like I can't handle it because it's hard.

Brian Lehrer: What are you thinking now, Jess, listening back to that clip?

Jessica Gould: I think this experience of a kid shutting down is what's so powerful and so distressing. He's somebody who really wants to be able to read. He and his grandmother would work on it at night and they would get as far as he could before he got too frustrated. As a parent, I know how hard that is when you're rooting for your kid, your kid wants to be able to do it, and yet they can't do it. I think Matthew is a stand-in for a lot of kids with dyslexia, and lots of learning disabilities who is trying their best and doesn't understand why it's so hard.

Brian Lehrer: Listeners, I wonder if anybody's out there right now who has dyslexia yourself or teaches people with dyslexia or maybe you're a parent of someone or otherwise close to anybody with dyslexia, what works? Let's help Jess, maybe crowdsource, a follow-up to her reporting. What in your experience does help kids with dyslexia learn to read and learn in general? 212-433-WNYC, 212-433-9692.

You can also throw in, if you've had similar frustrating experiences to some of the ones that Matthew and his grandmother went through with public school system, what do they need? How quickly is Mayor Adams, who I think Jess reports really is trying to turn things around on the dyslexia front? How quickly is this succeeding, if at all? 212-433-WNYC, 433-9692.

Here's another clip from Jessica's reporting. This is 17 seconds. This is a teacher at a dyslexia pilot program trying to teach the class what is now the Universal Reading Program, or supposed to be in the New York City public schools teaching through phonics.

Teacher: Ooh, let's do second sounds. Ready second sound.

Kids: Second sound.

Teacher: S nose Z.

Kids: S nose Z.

Teacher: Rule.

Kids: Rule.

Teacher: When it is after a shaky letter.

Kids: When it's after a shaky letter.

Teacher: Good job. You guys are so smart.

Brian Lehrer: All right. Jess, what did we learn from that clip?

Jessica Gould: When I was in that classroom, which was at PS 125 in Harlem which is one of the pilot programs, so one of these small programs where teachers have been funded to get extra training in how to serve students with dyslexia and really to improve literacy instruction for all students. You hear them breaking down the words and the letters teaching the sounds, teaching syllables, it's repetitive. Because it's radio, you can't see this, but the kids were moving their arms in hand motions. They were swinging a bat for bat, that thing. This multisensory, that meaning moving your body, and repetitive instruction is what works best for all students really when they're learning to read, which has not been what the city public schools have been doing enough of.

This is actually true across the country. Many schools have not been doing enough of this. It's not just kids with dyslexia who've been struggling to learn to read, but many, many kids, but it's especially important for kids with dyslexia. This school pairs that instruction in the classroom with more interventions outside of the classroom to give them in small groups or one-on-one more extra help. The goal is to be able to teach more kids with language-based learning disabilities, which is what dyslexia is, how to read in-house.

What I'm watching for, and you mentioned this, and I'm really hoping that our listeners will keep me posted, I want to know how much this is really happening in schools across the city. It's supposed to be happening in half of elementary schools more and more. That they're doing this emphasis on phonics and these basic building blocks of reading, and moving away from some of the disproven strategies that the schools had been using for years, like teaching kids to guess at words based on the pictures or the first letter or the context and really teaching them how to sound things out. What I'm hearing so far is that it's a mix. That some schools are moving more in that direction but some teachers are still leaning back on old training and haven't been retrained enough in this new way of doing things.

Brian Lehrer: When we hear about replacing the so-called "whole language" or Columbia Teacher's College system, with phonics, it sometimes gets framed as almost like a culture war issue. You're saying this is part of Adam's dyslexia program that the phonics instruction is specifically relevant to kids with dyslexia as well as to others?

Jessica Gould: Right. It's not just phonics. The literacy experts out there will tell me that I'm oversimplifying if I say that. It's also vocabulary and comprehension, but really focusing in on direct instruction in the basic building blocks of reading. The Adams administration is trying to reform literacy in all elementary schools, starting with half of them this year, focusing on new curricula that are supposed to be based in what's called the science of reading, focusing on those basic building blocks of literacy. Then the next half of the school districts will adopt this for their elementary schools next year.

A move away from what's called this balanced literacy approach, which has mixed a little bit of phonics with independent reading even for kindergartners who don't know how to read yet and then they're sitting there with books not knowing what to do. Some of these what's called cueing strategies, where you're guessing based on clues or cues. This is where things should be moving for all kids. Then in addition to that, there's some additional supports for kids with dyslexia in these pilot programs, which are so far really small.

Brian Lehrer: I'm going to take a call from Bonnie in Syosset who says she's a special ed attorney and has worked with kids and families like the one you followed for seven months. Bonnie, you're on WNYC. Thank you for calling in.

Bonnie: Good morning. This is a heartbreaking situation, it's frustrating because dyslexia has been known for many years. I actually wrote a large review note on the least restrictive environment. I looked at the legislative history of the Individuals with Disabilities Education Act. The committee report showed that dyslexia was one of the disabilities that was very much in mind. Back in 1974. This is not news.

It is frustrating when parents see problems, especially minority, low-income parents. They know there's something wrong, they're disrespected in the school system, but they need to understand how to get that private neuropsychological evaluation that'll really do a deep dive into the the issues. Then when they go to the specialized schools where they are getting the daily Orton-Gillingham instruction, plus the multi-sensory instruction in classes where they're repeating what's happening in the individual instruction. These are very small schools with small classes--

Brian Lehrer: Bonnie, let me ask you a quick follow-up. Our time is limited, but how far are we from a world in New York City or I guess other school systems? It's interesting to me, people are calling even though this is framed as Jessica Gould's reporting for us on a kid with dyslexia in the New York City public schools. People are calling just from all over our area. From Long Island, from Westchester, from Connecticut with dyslexia stories. Bonnie, how far are we from not having to take school systems to court to try to get appropriate education for kids with dyslexia?

Bonnie: I do this all day long. One of the problems, and it is not just New York City, but you feel the biggest hit in New York City because of the numbers. School districts are hell-bent on keeping children mainstream and it doesn't work for everyone. It's really hard. The little boy you spoke about was reluctant to read to you one-to-one. Can you imagine what his experience is like in a classroom with 30 people?

Even if it's an integrated co-taught class with two teachers, that teacher's there to keep them up to pace with the general education curriculum, not to remediate. It's not fair to the children. They really suffer. When they go into these specialized schools I get calls from parents saying, "They started to read street signs. I never saw them do that before."

Brian Lehrer: Wow. Hey Bonnie, what's your dog's name?

Bonnie: My dog is Winnie and she's the most beautiful Corgi in the world, but she is loud. [laughs]

Brian Lehrer: I'm sure she's the most beautiful Corgi in the world. I only wish that we could have separated you two in stereo, so we have you and one speaker and Winnie in the other speaker. It would've been so much fun. Thank you for adding immeasurably to this conversation and for your legal work in this area. We have time for one more caller for Jessica Gould, our education reporter who followed one nine-year-old with dyslexia in the New York City school system for seven months. Natalie in Norwalk, you're on WNYC. Hello, Natalie.

Natalie: Hello, Brian. How are you today?

Brian Lehrer: I'm all right. What you got for us? I see you're a parent of a kid with dyslexia.

Natalie: Yes. I am a parent of a child with dyslexia. I live in Connecticut, and I realized very quickly that public school could not handle her and they did not know what to do. I know that she needed a multi-sensory approach, and we ended up at the Windward School in Westchester. I am a low-income single mother, and there was so much help in funding. If I did not do the research myself and put my daughter where she needed to be, I don't know what would've happened.

I'm so grateful to Windward because they train teachers who are able to give your kids the tools they need. Now Trinity has chosen to reenter high school. She chose a public school and Trinity's excelled. They told her she couldn't stay in special education when she was tested. She's in all honors courses. If she did not get that from the Windward, I don't know where she would be. I think, it's not just public schools, it's everywhere.

Brian Lehrer: You're not the only caller, I'll say, calling in to praise the Windward School in this respect. It sounds like the hole in the system that you've discovered at the beginning was that you had to do that research yourself, and the system wasn't saying, "Oh, your child appears to have dyslexia. Here are the ways we can help."

Natalia: No, I was just lucky to be in amazing school district, and I also worked in public education in special education. I had a little bit more background, but I knew at the end of the day, it's very difficult for teachers. They have 25 students, different personalities, different reading levels, and it is just not working. The teachers have to be retrained and the multi-sensory approach is the best thing. The Windward Institute and Windward should be praised. Honestly, the mayor needs to start there. If he could start there and start to get New York teachers, schools, and some teachers educated from the program and have him go through the institute, I think it would do amazing things for New York.

Brian Lehrer: Natalie, thank you so much for your call. We're going to play one more clip, and this is of Mayor Adams, 11 seconds sharing what he'd say to children struggling to learn to read due to dyslexia.

Mayor Adam: I wish I could just lean in the air of those young children right now, or living in the area of uncertainty to whisper in the air, baby, you got this, you got this because your mayor got you.

Brian Lehrer: Jessica, in our last 30 seconds, you had the resources here to do this in-depth reporting, following Matthew and his grandmother and their story for seven months. Do you think you learned stuff by doing this for seven months, that that was more than if you had just sort of gotten to interview somebody and filed a piece?

Jessica Gould: Well, definitely. This process of navigating the system for kids with dyslexia is so complicated as the last caller was just talking about. I talked to lawyers who are parents who said they felt like they were straining even with a legal degree to navigate how you move outside of the system and sue the DOE basically to get the services you need. Yes, it took me a long time to understand it and to build the relationship, and to follow through. I appreciate our newsroom allowing me to do that and the editors who worked really hard to make this project successful.

Brian Lehrer: Listeners, if you want to hear Jess's full reporting, you can still hear it at wnyc.org or read the written versions at Gothamist. Jess, thanks. Sorry, it took us so long to get you on the show. I've been wanting to do this for weeks, but for all the news that's going on in the world well at least we finally did it today. Thanks a lot.

Jessica Gould: Thank you, Brian.

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