This is the first part of a two-part series on dyslexia. Listen to Part Two here.
Over the past few decades, big scientific advances have helped us identify and understand dyslexia. But overall, public schools around the country are still failing students with the learning disorder -- particularly low-income kids of color.
Our stories are made to be heard. Please listen if you are able.
On a warm spring Saturday in 2019, Megan Potente is giving a group of teachers a taste of what it’s like to be a dyslexic learner. For the first exercise, she gathers seven volunteers to take part in a round-robin readalong -- common in plenty of classrooms.
The first reader breezes through. “People with dyslexia see letters and words the same way those without dyslexia do,” she reads. “They just take an alternative neurological route to connect the letter with its appropriate sound.”
But, a few of the packets are booby-trapped to mimic what a dyslexic reader might experience. One reader stumbles through, skipping words and using “something” as a stand in for plenty of others. The exercise is meant to convey the struggles and shame many dyslexic learners experience. So Potente, in her role as teacher, presses the struggling reader to wrap it up.
“We’re running out of time,” she says with exaggerated impatience. “ What did you learn?” The answer: “I’m not really sure.”
Potente is a San Francisco educational therapist, and a leader of Decoding Dyslexia CA, a grassroots movement of parents and educators. Dyslexia is a common learning disability that affects the way the brain processes language.
It runs in families, including Potente’s. The dyslexic brain struggles to connect letter symbols with their sounds. That can make it hard to distinguish i’s from e’s, p’s from b’s or t’s and so on. The unlucky volunteer was working so hard to decode the text she couldn’t absorb the content.
It’s also hard for dyslexic students to express their thoughts or intelligence in writing. So for another exercise, Potente provides a list of very basic words that are off the table:a, be, for, have, in, of, that, the, to, and. Also, participants are told to substitute a t every time they use a b and an a for every o.
“If you don’t finish you’re just gonna have to stay in from recess,” she says to some chuckles. “This is really important.”
The outcomes are painful. One teacher shares that she’d wanted to write, ‘Yesterday I drove to the hospital.’ “But I couldn’t use all the words so I just said ‘yesterday, I drove. We went. Went in our car,’ with the letters changed.”
After a little more than an hour, Potente asks the money question: How would you feel if you had to experience this every day, all day long? The murmured responses: I wouldn’t like school. I wouldn’t want to go to school.
The hidden disability
Dyslexia’s been called “the hidden disability.” So Potente’s work to bring the most recent scientific research to teachers is crucial. Because anywhere from five to 20 percent of the population are believed to have dyslexia.
California Governor Gavin Newsom, is among them. During his tenure as lieutenant governor, he sat down with ABC 7’s now-retired Cheryl Jennings to share his experience, in hopes of reducing the stigma for today’s students.
He dreaded reading aloud, he told her, describing “that moment where the clock didn’t strike, and I had to stand up and people start laughing. I’m shaking and I’m trying to read and I can’t. You feel dumb. You feel isolated. People call you dumb.”
Newsom shared that his mom kept trying out new schools, hoping he’d get the help he needed. He went to five in seven years, “because, frankly,” he said, “the schools back then didn’t really focus on it, uh, and they didn’t want to focus on it even after they discovered that they should be focusing on it.”
Today, we know much more about dyslexia than we did back then. There’s cutting edge research happening nationwide including here in the Bay Area at the UCSF Dyslexia Center. High-resolution MRIs clearly show differences in the dyslexic brain. And the center uses those not just to look at the difficulties of the dyslexic brain to help kids and adults understand their strengths.
One common misconception about dyslexia is that it signals low intelligence. It doesn’t. Anyone can have it, including those who otherwise display brilliance and those who struggle with cognitive deficits.
But since Newsom’s schooldays, researchers have determined that a very specific type of instruction -- called Structured Literacy -- works best to teach dyslexic learners to read and write.
Structured Literacy, a term coined by the International Dyslexia Association, is different from the so-called Whole Language or Basic Literacy approach most schools still use, where kids make discoveries on their own, identifying a first letter in a word, for example and guessing the rest. Instead, it involves teaching every element of written language directly, from letters and sounds to how to break words down into parts to read them.
That knowledge builds in an explicit sequence and is often multisensory, so a student while looking at a letter in the alphabet will be saying its name aloud and then tracing it on paper, or in the air, or on their arm.
Tobie Meyer is the state director for Decoding Dyslexia CA. She’s not an educator. She’s a wife and mom to three kids. And that’s where her advocacy started about seven years ago, with Chase, her middle child.
Early on, Chase had trouble writing his name and rhyming. But he loved preschool and kindergarten. But three weeks into first grade, Meyer said, “he called me into his room after I had already tucked him into bed and he was crying, and he told me that he was stupid and he didn’t know what the other kids knew.”
When he was at school, he told his mom through his sobs, he would just lay his head on his desk and try not to cry. Meyer didn’t realize it then, she said but that night marked “the beginning of my journey into dyslexia.”
Meyer soon learned that many school districts were still not assessing kids for dyslexia or, when they did, often weren’t providing the right kind of instruction. Decoding Dyslexia CA wasn’t pursuing legislation at that time. But, Meyer said, “that changed in February of 2014 when I attended a town hall meeting of my assemblymember, Jim Frazier. And I stood up in the pizza parlor with tears rolling down my cheeks and I told Chase’s story.”
California Dyslexia Guidelines
One year later, almost to the day, Frazier (D-Fairfield) introduced legislation, sponsored by Decoding Dyslexia CA. Assembly Bill 1369 did a couple of things. It required school psychologists to evaluate the “phonological processing skills” of all students they’re assessing kids for learning disabilities. That’s a red flag for dyslexia and can help ensure that kids with the learning disability don’t fall through the cracks.
The bill also called on state education officials to craft detailed dyslexia guidelines for all school districts. It unanimously passed all committees and both houses. And three years ago, the California Department of Education released those dyslexia guidelines -- 138 pages long.
There was just one problem, Meyer said. The original legislation had mandated universal screening for all students in Kindergarten through third grade, teacher training and structured literacy curriculum. But the bill “was gutted and amended in the very first committee.”
Opponents -- representing teachers, school boards and special ed administrators -- mostly took issue with the cost and scope of screening. The guidelines were a compromise and they are voluntary. Some districts, Meyer said, “are waking up and saying yes, let’s do this, let’s come up with a five year plan on how we can implement these guidelines.”
Palo Alto Unified just rolled out universal dyslexia screening for Kindergarten through 3rd grade students as part of its effort to comply with the guidelines. San Ramon Valley Unified has rolled out structured literacy for all Kindergarten and first graders. Los Angeles Unified has launched extensive training for all teachers that’s available online. And there are some others making strides. But, most districts, Meyer said, “are choosing to ignore what is considered best practice.” And despite clarification from federal and state education officials, and the California Association of School Psychologists, Myer said, there is still “a lot of pushback from school districts in utilizing the word dyslexia.”
That, Decoding Dyslexia CA leaders believe, is “partly because once you really hone in on what that student’s struggles are, what their deficit or disability is,” Myer said, “it handcuffs the district in a way to provide that appropriate remediation.”
Still, all those advances in research have led to an explosion of private schools, and private educational therapists specializing in dyslexia. For families who can afford it. Meyer has been acutely aware of that divide from the start.
“Chase was not the reason I was pursuing legislation on behalf of DDCA,” she said. “Chase was going to be fine. My family had the means to advocate for identification and remediation for Chase or we could pay for you know, a private tutor to teach Chase to read.”
The family also paid for a private attorney who helped them successfully push for Chase to get what he needed. Because federal law requires school districts to provide a free and appropriate public education to students with disabilities. Including those with dyslexia severe enough to affect their academic progress. Yes, Meyer said, she and other dyslexia advocates fought for the legislation for all families, “but most of all for the families that were less fortunate.”
In the summer of 2019, representatives of all those private nonprofit schools and tutoring agencies lined the halls at EdRev, a huge annual expo focused on students with learning differences. But for low-income families, the news was not good.
One administrator said public school districts and charter schools will sometimes pay to place students at her private school for dyslexic learners. But that tends to happen only when families lawyer up. Some schools do help subsidize tuition for families in need. But another administrator shared that in the case of her school, “it's quite negligible, quite honestly. It’s a month’s tuition.”
Steve Carnevale was at EdRev, too. He’s a venture capitalist and big donor for dyslexia causes who founded and co-chairs UCSF’s Dyslexia Center. The center takes all its research and innovations and applies it to a very fortunate group of kids. Those kids are from a private school for dyslexic students on the peninsula. Carnevale was once president of the board of trustees there.
“We raise one and a half million dollars a year that go to scholarships but it’s still of course a drop in the bucket,” he said amid the buzz of hundreds of attendees gathered at San Francisco’s Oracle Park stadium to dive into the science of dyslexia and the myriad resources available to families that can afford them. “I’ve come to realize that the underserved populations are completely ignored. The vast majority we’re not serving at all.”
That’s why the Yale Center for Dyslexia and Creativity calls dyslexia “a civil rights issue of our time.” School psychologists who conduct special ed assessments are more likely to over-categorize black students as “emotionally disturbed” or “intellectually disabled” -- and miss signs of learning disabilities like dyslexia. black students also slip through the cracks because educators often expect so little of them. It’s been happening for decades.
Chanda Smith’s story became a matter of public knowledge in the early 1990s, when she became the lead plaintiff in a landmark lawsuit that led to a consent decree and sweeping improvements to special ed at the Los Angeles Unified School District.
Smith had dyslexia, and in a PBS News Hour report she explained what that was like for her: “Just like a bunch of words just scribbling on the paper. My mom told the teachers and everything, but after the third grade, I never got any help.”
Those decades of court oversight just ended last year. But that legacy of failure still casts a shadow on the lead plaintiff in the case. Smith is now a mother of four.
“It's hard for me to get a job. I’m always having big worries because I have to take care of my family,” she told the producer. “And it’s kind of sad because, when I have to go to my 10-year-old, can you read this for mommy? You know. I have a grandson now, I want to be able to read him a story. And that’s something that I can’t do. I feel like it’s been taken away from me for what reason?”
Rewind to another class-action lawsuit -- from the 1970s -- known as the Larry P. case. That statewide legal action challenged the use of culturally-biased IQ tests to improperly channel tons of black students into dead-end special ed classes. They got almost no instruction. Last year, this reporter tracked down the real “Larry P.” It turns out that was a pseudonym. His real name is Darryl Lester, and he seems to have been struggling with a very specific learning disability too. Most likely dyslexia.
“It was just certain things I couldn’t read when it came to reading and stuff,” he said in late 2018 from his home in Tacoma, Washington. “Other stuff I did fine. I was very good at math.”
What followed for him was a life of illiteracy and low self-esteem.
“I was basically embarrassed of myself because there were things I needed to learn that I didn’t learn,” he said.
Lester is 61 years old now. Last year, he came to San Francisco to tell his story -- on a panel with current black parents struggling to navigate the special ed system. Some members of Decoding Dyslexia CA had come to listen. Including Tobie Meyer, the state director who helped plant the seed for California’s dyslexia guidelines.
“We came up with like 1100 dollars or something like that for him. And, we thought to ourselves, yeah this is great it’s cash, you know,” Meyer said. “But what’s a lifelong gift that you can give somebody? And that’s literacy. We just said alright let’s try it.”
Learning To Read -- At Last
The advocates from Decoding Dyslexia CA knew they needed a tutor in the Tacoma area highly skilled in Structured Literacy. Because the longer a dyslexic learner goes without remediation, the longer it takes to learn to read. Last fall they found Jeanne Fitzgerald. She’s certified in the Wilson Reading System, and has decades of experience. In a recent lesson conducted remotely through a cell phone video app due to coronavirus restrictions, Fitzgerald prompted him to read -- first to himself and then, after describing the general content, aloud. .
“They get the log off the ship,” he read.
“OK,” Fitzgerald prompted, “so look at the second word and, would you tap it with me.? Guh. Aw. t.”
“Got. Got.” Lester replied. “Oh, they got the log off the ship.”
This lesson marks Lester’s 55th since last fall. It shows that Structured Literacy instruction takes time.
“So let’s just talk for a minute about reading in general. Is this the same as it was for you when we first met?” Fitzgerald asked. Then, Lester explained his progress.
“I can read a little bit, better than I could when we first met,” he told her, saying that he’s learned to sound out words, break them down and know his vowels. “They were kind of tricky at first. But the more we kept practicing, they came more clear.”
These lessons have required a huge commitment from the student.
“We’re gonna keep at it til, you know, it comes natural,” he said. “I’m motivated. I’m very motivated. I’m not gonna give up.”
“That’s right,” Fitzgerald answered, “and we’ve talked about that, that we do it until it becomes automatic or natural. We don’t add on anything new until you get that comfortable feeling.”
Righting this wrong for Darryl Lester all these decades later costs money. Meyer and the other leaders from Decoding Dyslexia CA were fortunate to find an anonymous donor willing to fund his twice weekly lessons -- for a year.
But what about all those students in California public schools right now who aren’t getting the help they need? Or haven’t for years? Providing remedial instruction is way more expensive than getting it right from the start. But implementing the state dyslexia guidelines is costly in the short-term. How that will happen now that school districts are under such intense financial pressure is an open question.