The right to read: My dyslexic daughter got the help she needed. All kids should.
Before I was a dyslexia advocate, I was a mom sitting at the pool and complaining to a woman I will call Barbara about my daughter’s school. Barbara had four children — the youngest still in college, the others launched into different adulthoods — and was one of those moms who got her kids, who deftly described the job of being four different moms to four different children.
I was speculating, I think, about how my daughter Phoebe, who has dyslexia, was being affected by attending her public middle school, and I asked for Barbara’s advice. “Oh,” she said, “I don’t know. My kids with no issues, I sent to public school. My kids with issues, I sent to private school. I thought that’s what you did.” She smiled at me as if it was a candid piece of guidance. Life hack! We don’t send kids with issues to the public schools.
First, I felt poor (how do people survive sending multiple children to private school and then four children to college?), then I felt dumb (was the obvious solution right under my nose?). And then I felt angry. I said to Barbara, “Oh, and it’s all right with us if the public schools just don’t serve kids with learning problems?” After all, about one in five children has learning and attention problems, and don’t we need our public schools to help them become productive adults? Barbara gave me another smile, a kind one that seemed to say, “Of course you’re right, my dear.” Then she put on her goggles to do her laps.
Conversations such as this one, as well as my experience with Phoebe, sparked an interest in dyslexia and advocacy, and I ended up serving two years on a task forceestablished by Maryland’s governor and General Assembly to make recommendations about dyslexia education. (Much of what follows was influenced by the experts I met while on the task force, but the opinions expressed are my own.)
Through this experience, I’ve come to understand that reading is critical to a safe and productive adulthood, and a prerequisite to participation in civic life. A lawsuit filed this year against the state of Michigan contends that the opportunity to learn to read should be seen as a constitutional right — and a right that is being violated in Detroit, where only 6 percent of fourth-graders and 7 percent of eighth-graders read proficiently, according to National Assessment of Educational Progress scores. Whether this argument moves you or not (yes, the opportunity to learn to read is not spelled out by the Constitution), we should all become more aware of dyslexia and the policy changes needed to improve millions of lives.
The arc of Phoebe’s treatment, I later realized, was typical of many students with dyslexia who need significant one-on-one help to obtain a good outcome. When she struggled with reading in kindergarten and first grade a decade ago, we tried not to fret too much, because her teachers told us that late bloomers often “take off” and read fluently by third grade. In second grade, we found her a private, after-school tutor. Yet even after two years of one-on-one instruction, the information wasn’t “sticking” from one session to the next. “I know this is hard to hear,” one of her tutors told me, looking at my face and recognizing my skepticism. But the tutor understood that Phoebe fit the best definition we have for a dyslexic: She couldn’t read even after having been provided with very adequate instruction.
It was now time to pay for outstanding instruction — and word in my neighborhood was that I could find it at the Speech-Language Department of the Lab School of Washington. Phoebe did an intensive summer program before fourth grade, then was tutored twice a week there during the school years from fourth through sixth grades, and more sporadically elsewhere for a couple of years thereafter. Conservatively, we spent more than $35,000 on tutoring; the going rate for speech and language pathologists is more than $100 an hour. Every six months or so, I would eagerly ask her tutor, “How’s it going?” and hope to hear, “We’ve turned the corner.” Instead, I would be told that Phoebe was making steady progress at holding on to more letter combinations and sounds, and that her speed was not as slow as it used to be. This went on for years.
While not thrilled about the tutoring, Phoebe recognized that the sessions at the Lab School were “better” than the help she was getting at public school, even from reading specialists and special educators. Why was this? I believe it was because her tutor was using an Orton-Gillingham-based approach to help her remember phonics — the word sounds that “normal” readers can’t recall learning to recognize in print because their brains held on to that information like flypaper in first grade. Developed in the early 20th century, Orton-Gillingham emphasized explicit, sequential, multisensory instruction (hearing, saying, tracing and writing). For example, Phoebe and her tutor might spend a session on the letter combination “ow” and the different sounds it makes, then review letter combinations Phoebe had mastered earlier. The training and materials for programs based on Orton-Gillingham tend to be expensive and work best one-on-one or in small groups, which may explain why this particular intervention wasn’t available at her school.
During the summer before eighth grade, Phoebe’s tutor reported that her grasp of phonics was now in the average range, which meant she could decode nonsense words (like a line from “Jabberwocky”) about as well as her peers. But her fluency, the speed at which she read, was too slow for good comprehension or enjoyment. The fix for fluency was not more expensive tutoring in phonics (hallelujah!) but simply more time spent reading. Unsurprisingly, Phoebe thought books were “boring.” “If only she could find something that captured her interest,” her tutor said. During the school year, Phoebe came across that something: a smartphone app called Wattpad, where she read self-published stories, many of them by teen authors. She sweet-talked her teachers into accepting Wattpad as her free-reading book.