Smile Politely

Decoding Dyslexia: How parents are advocating for their kids’ literacy needs

According to the National Assessment of Educational Progress (NAEP), 35% of fourth graders in the United States read below the basic level. That means that the students “struggle to find relevant information, make simple inferences, identify details that support conclusions, and interpret meanings of words in text.” Additionally, the International Dyslexia Association estimates 15-20% of the population may have signs of dyslexia.

Erin Murphy-McHenry is one of the co-founders of the East Central Illinois Chapter of Decoding Dyslexia. They support a structured literacy for students learning to read, as opposed to the whole language approach (or balanced literacy) that dominates current curricula in schools. Advocates for structured literacy want to address the literacy crisis and saw the IASB Resolution 1 Pre-Service Teacher Education and Licensing in Reading as a step in the right direction. On Saturday, November 20th, IASB Resolution #1 passed with 89% support.

I spoke with Murphy-McHenry, Friday, November 19th, the day before the resolution was voted on.

Smile Politely: Tell me your story and how you came to do this work.

Erin Murphy-McHenry: I have a fourth-grade son; he’s nine and a half. He’s very intelligent. One of the things about dyslexia is that there’s usually a gap between what you would expect to happen and what actually happens, but you don’t know that until [the student has been] struggling for a while.

He was taught structured literacy at Montessori, and his teacher said that he might be an early reader because he was picking it up and because he is bright. Then he got into kindergarten and his progress was really halted for a variety of reasons. We took him to University Primary. They’re a whole language program, which means they don’t teach with structured literacy, or the science of reading. But they’re great at social emotional development and at that point in time, that was my focus.

He was learning and beginning to thrive and adjust to the school environment in a really productive way. But then by first grade, I kept saying, when should he be reading? The response was, “Oh, he’ll read. He’s so bright, he’ll pick it up whenever he’s ready.” 

By the time second grade got around, and the first quarter wrapped up, I was like, shouldn’t he be reading by now? Or, reading more fluently? Because he could piece together small things, but he wasn’t interested in it. And he loves stories. He’ll talk to you all day, like a grown up. It was odd that he wasn’t reading.

His teacher was like, “Yeah, I think it’s time to get him checked out.” I had some friends who knew about Leslie Sullivan — she has a tutoring group in town. I took him to Leslie and she assessed him. She has a master’s degree in the science of reading. And she said, this is classic dyslexia. Dyslexia is a spectrum of mild to profound and he’s middle of the road.

One of the things about dyslexia is that it’s consistently inconsistent. One day, he’ll be able to read this big word, and the next day, he’s like, whatever. It was kind of confusing for me, because there were moments where I’ve thought, okay, he’s gotten it, and then others where he clearly wasn’t able to do it. And he was trying.

I read Overcoming Dyslexia, and I started him with Leslie’s group tutoring. At the same time, there were a bunch of kids getting diagnosed with dyslexia, and moms are talking to each other. The parents were beginning to share information and resources and were like, we should meet for coffee. At the same time, I listened to the Emily Hanford podcast. I was getting an education. 

I was just trying to read everything and learn what I could learn, and so were the other moms at the same time. We were just trying to support our kids. We learned about Decoding Dyslexia and figured out that we could establish our own chapter here. So that’s what we decided to do. It’s a parent’s group chapter, grassroots. This way, we can support each other and make whatever kind of changes we can for all kids, not just ours. So that’s how it started.

SP: Tell me more about the East Central Illinois Chapter of Decoding Dyslexia.

Murphy-McHenry: It’s a grassroots parents group. It’s simple. There’s no leadership except the Action Committee, which is the first five people who basically started it up. We advocate, educate, and support legislation for dyslexia. That’s the mission.

Also, students need to know what they what they need, so that they can self advocate. But if they don’t know what they need, how can they advocate for themselves?

It’s been quite an education on how things could be different for all learners and society because these people are so creative. I mean, we’re talking about Steve Jobs, Richard Branson, NASA scientists…out of 300 business leaders surveyed, 40% had dyslexia. They’re skilled at different ways of thinking.

Additionally, at least 40% of people incarcerated are dyslexic. If they’re not taught appropriately in school, they really, really struggle with learning how to read, which then leads to self-confidence issues, behavioral problems, and their creativity goes into those less productive areas. They aren’t happy at school. They can’t do what you’re asking them to do.

SP: In an ideal world, what do you want to happen in the C-U area?

Murphy-McHenry: In the ideal world, we would have free universal dyslexia screening; we would find them early. We would have teachers and reading interventionists trained in the science of reading and structured literacy. Dyslexic kids are like 20% of the population, but only 30% of our kids are reading at or above grade level. Why? If you break that down by race, that is even more unequal. All kids can benefit from structured literacy. 

You would have the screening, you would have the correct teaching practices, curriculum that would back that up, teachers would be trained, and you would have administrators who are also trained, and understand what the teachers need to be successful in the classroom. And then for dyslexic students, you would have pullout reading interventions that are one-on-one that can do remediation, and help them with whatever they can learn. Because as I said, its mild to profound. On the profound end, they might need a lot more interventions like speech to text and text to speech…they need to be able to access the information verbally if they can’t read it. And then, they need to tell you what they know; if they can’t write it, they need to be able to record it and use speech to text.

We have the technology, it’s almost free now. All we need to do is use it and teach them how to use it. But often teachers don’t even know what’s available, or how to implement it. Those are some of the basic things that can make huge differences, especially for the kids who are beyond fourth grade and are already at this point supposed to be writing these big long papers, and they don’t have the skill set to do it. But, they have ideas. If they had the tech, the ability to use the technology, and the teachers understood how beneficial that could be for them, they could still thrive, and do much better than they might be doing at this moment.

SP: Is there anything else you’d like Smile Politely readers to know?

Murphy-McHenry: Literacy in and of itself as a social justice issue. Having a citizenry that is able to access information in an information age is a civil rights issue. And I just I can’t underestimate the importance of literacy in this day and age, for being able to critically think about your sources where you’re getting information, what that information is selling to you, and why it’s selling something to you — being able to deconstruct something like that. This is an issue of literacy across the board. But it is disproportionately affecting our Black community, and our Latinx community, and English language learners. The science has shown us what to do…we know what to do and we haven’t been doing it. Follow the money to McGraw Hill and these publishing companies that are selling, selling, selling and they’re great at it. The colleges of education are not educating their teachers. And here we are, and who’s suffering? The kids and our communities. I definitely believe the literacy issue contributes to behavioral issues in schools and the school to prison pipeline. That’s why we as parents, are so passionate about it right now. Because our kids were the canaries in the coal mine and we had to see the system for what it is. And while we’re getting our kids to be okay, I want my community okay too.

For more information see Resources on the Illinois Reading Crisis.

Top photo from East Central Illinois Chapter of Decoding Dyslexia Facebook page.

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