This is the second story in a two-part series on dyslexia. Listen to part one here.
Our stories are made to be heard. Please listen if you are able.
Geraldine Robinson stepped proudly onto the stage and stated her name. What she said next was an understatement: “I am a fightin’ grandmother.”
Robinson, 65, is a devout and joyful Christian who’s now raising three of her grandchildren. She’s been a relentless advocate for two of them in particular. And, she told the audience, the stakes are high: “I am fighting for their life.”
On this fall evening in 2019, the crowd gathered to celebrate the 40th anniversary of a disability rights nonprofit -- and honor this Oakland matriarch. Her grandson and his younger sister showed early signs of dyslexia.
“About 30 years ago, I had two sons that had dyslexia,” Robinson said, her voice rising. “So I knew some of the signs.”
Science has taught us a lot since then about what exactly dyslexia is and isn’t. The neurobiological learning disorder affects the brain’s ability to match letters with their shapes and sounds. It impacts reading, writing and sometimes speech. And it runs in families. So Robinson talked to the kids’ teachers.
“I said, ‘We have a history of dyslexia.’ And they said, ‘No that wasn’t the problem.’ That’s when the fight began.”
Research points to effective ways to teach kids with dyslexia to read. The approach is called “Structured Literacy.” The longer the wait, though, the longer it takes. But evaluations of Robinson’s grandkids never mentioned dyslexia. Instead, they assigned the kids to a different special ed category.
“Intellectually disabled,” Robinson said, drawing out the words.
Her grandkids were first evaluated for special education at an Oakland charter school, records show, and already had their special education plans when they arrived at the Oakland Unified School District. Eventually, the district changed the grandaughter's primary designation to “specific learning disability,” which included dyslexia but made no mention of it. Her grandson’s “intellectual disability” designation remained.
That label suggests a child is globally impaired. Low expectations often translate into fewer intensive resources to address underlying learning challenges, like dyslexia. Bias adds another twist: Nationwide, black students are overrepresented in the category of intellectual disability. And some educators are more likely to punish black students for falling short, even if it’s clear the work is too hard for them.
“My grandson, who didn’t have a behavior problem, was never able to go on field trips,” Robinson explained. “They wouldn’t allow him because of his academics.”
On this night, though, Robinson was feeling grateful. Because an advocate here at the Disability Rights Education & Defense Fund taught her exactly which law to cite to fight for her grandson, “which changed his life because he was able to go hang out with the rest of the kids.”
Her bigger news? A few months earlier, the Oakland Unified School District agreed to pay for intensive evaluations of both kids by an outside neuropsychologist. So, Robinson said to hoots and applause, “they were tested for dyslexia after five years of fighting.”
As each year slipped by, Robinson’s grandkids fell further and further behind. And securing those independent evaluations wasn’t the end of her fight.
Cheryl Theis, the education advocate who’s been helping Robinson, put it this way when she introduced the family:
“They’re a perfect example of doing everything right and still getting nowhere, because assumptions were made around the intersection of race and disability that these children were just low-ability children.”
Robinson doesn’t want to further stigmatize the kids, so she asked that they not be named. This story relies on special education records that she shared, and focuses mainly on her grandson. Because, Robinson said, as an African American boy, it’s his future she fears for the most.
Many private sector resources are available to families of dyslexic learners who have the money to pay for them. Robinson is on a fixed income. She’s not one of them.
“I’m sure if I had the resources, I could put him in a private school and he would get the help,” she said in an interview back in April 2019, “But because I don’t have the resources I can’t get the help and so he be a candidate for the state prison or whatever prison there is."
She has reason to be fearful. A study of Texas prisoners published two decades ago found that more than three-fourths were functionally illiterate and about half scored poorly on tests that indicate a likelihood of dyslexia. Studies have also shown that kids who can’t read at grade level by the 3rd grade are more likely to drop out of high school.
Robinson has had full custody of the kids for a while, but even when they were toddlers they lived with her off and on. Her grandson, she said, showed red flags for dyslexia. His letters were backwards or sideways or upside down. And he struggled to match written words with their sounds.
“He would have such a hard time trying to distinguish what the word was,” she said. “If I pointed out the phonics, he could say it, but then when we put it to the word, he could not read the word with the phonics in there.”
Robinson read to him a lot. The Dr. Seuss books, and the Amelia Bedilia series. Her grandson loved wrestling, so they brought home wrestling magazines, but soon he wouldn’t even page through them, he said, because it was too much of a struggle. Outside of those frustrations, though, Robinson said he was and is a gentle caring kid -- a “people pleaser” who will share whatever is his to make others feel good.
He’s also a drummer. He started at five years old and now plays at the family’s small East Oakland church. His grandmother said he “almost just automatically knew how to do it. You know, he could keep a beat right off the bat.”
And he’s a whiz at building and repairing things. The vacuum cleaner, the doorbell, the list goes on. A little over a year ago, when he was 12, Robinson said, a friend bought a part for her car and came over with it, but he “couldn’t figure out how to put it on.” That’s when her “Little Man,” as she calls him, stepped in.
“He told my friend, ‘Move back, move back, I got an idea.’ And he says, ‘Go get me some black tape. Grandma got some black tape.’“ Then “he went in up under the hood and fixed it!” Robinson recalled, still amazed and delighted. “And the car is still running. Just, creative, you know, he can see something and create it. It’s just the writing and the reading part he cannot do.”
That bleeds into every school subject. Nationwide curriculum standards developed about a decade ago, called Common Core, for example, rely heavily on word problems to teach math, “and so you’re just not doing a math problem, you’re doing reading and math,” she said. “He tries, he really does try but with the schools not accepting his disability the way it is, he has lost a lot of ground.”
To be clear, Oakland Unified didn’t just abandon Robinson’s grandson to fail. His records show he got speech therapy and was pulled out of general education classes to get extra help. But none of it involved the type of reading instruction dyslexic learners need. Though his annual special ed documents were supposed to address his strengths, they mostly didn’t. They did spell out ambitious goals for him year after year. But, his grandmother said, “they never achieved the goals. He’s never achieved a goal.”
Evaluations show that some teachers blamed him for his frustrations. One fifth grade teacher wrote, “He sulks a lot, is often angry, but will not talk about it. He rarely attempts any classwork.” A 7th grade teacher said he “sometimes can be very difficult when it comes to his work.” Robinson said teachers regularly told her that he “didn’t apply himself.” She knew that wasn’t it.
When dyslexia goes unrecognized and unremediated, experts say, low self-esteem, depression and anxiety almost always follow. Robinson said that during her grandson’s 7th grade year, he was sleeping so much she had him evaluated for narcolepsy. That wasn’t the problem. One week that spring, “he came home with this headache and the shakes and the whole nine yards where he’s frustrated that he can’t,” she said. He stayed in that state all week, she said, sleeping constantly, “terrified and stressed.”
Even as the years took a toll on her grandson, though, big things were happening in Sacramento. A new law took effect in 2016 that called for experts to craft guidelines for California’s public schools spelling out best practices for teacher training, universal screening, and that type of curriculum dyslexic kids need, termed Structured Literacy by the International Dyslexia Association.
But the guidelines aren’t mandatory, and Oakland Unified has plenty of company when it comes to falling short with dyslexic learners. That statewide focus on this learning disability, though, likely helped Robinson, when in 2018, she filed a complaint with the California Department of Education. She prevailed.
The state ordered OUSD to assess Robinson’s grandson for dyslexia. They did. There was a problem though.
“The result of that evaluation was so poor,” said Theis, the advocate with the Disability Rights Education & Defense Fund who has been helping Robinson. “I mean there is no other way to put it, and again I say that as someone who has a lot of respect for people working at the school district level.”
Evaluations are supposed to draw on parent and teacher interviews, class observation, and a variety of tests conducted by an educational psychologist. But, a review of the district’s evaluation, ordered by the state, shows it had none of that. Theis consulted a dyslexia expert, who told her that the OUSD psychologist responsible “clearly had no training in dyslexia and how to evaluate and identify it,” she said.
Rather than turn to the state guidelines or other expert sources, Theis’ consultant noticed, the district psychologist had pulled her dyslexia definitions directly from two non-scientific websites.
She also conducted no new tests on Robinson’s grandson. She never met him. Instead, the paperwork shows, she relied on his previous evaluations. And because those had determined he was Intellectually Disabled, she concluded, “he does not fit the profile of a student with dyslexia.”
Theis says that assuming a child with Intellectual Disability cannot have dyslexia or benefit from dyslexia intervention “is factually incorrect. We know from the science that those two things are not mutually exclusive.”
Plus, Robinson had contested those very evaluations. So at the next meeting to discuss the boy’s special ed plan, Theis asked right away for an independent evaluation with an outside neuropsychologist, a specialist with the training to do a thorough job. And the district agreed.
“But it begs the question,” said Theis, “what parent who doesn’t know that there’s even such a thing as the right to challenge an assessment would just go, ‘Well, that didn’t seem right but I guess they’re the experts.’”
OUSD officials declined to comment on specific student cases, citing privacy reasons. But in a statement, a spokesman wrote that the district “is committed to providing explicit, daily instruction in foundational literacy skills” to students. Over the past year, he added, OUSD has taken steps to implement three separate curricula that meet the state dyslexia guidelines, for students in early grades and those in special ed who’ve been left behind. And an early literacy screener will roll out next year.
But half a dozen literacy advocates and experts inside and outside the district said the process has been bumpy, teacher training inadequate, and implementation not far reaching enough.
Finally, An Answer
As for Robinson, last fall, she got the results of those outside evaluations, which included interviews with teachers and family and several days of testing. Both grandkids, they confirmed, “have dyslexia.”
Not just dyslexia. The evaluations note that both struggle with other learning differences, too. But, the evaluator concluded, neither child meets the criteria for Intellectual Disability.
This past year has been better for them. The district placed them at a different school where they’ve gotten access to speech-to-text and text-to-speech technology -- to help override their reading and writing difficulties. Robinson said her grandson is particularly transformed. He’s in a special education class now for kids with “mild to moderate” disabilities, with some students closer to his academic level.
“He’s good at math,” she said, “and he was able to help other kids. By the end of the school year he had a little more self-confidence, self-worth.”
An evaluation by his new special ed teacher three months ago said he’d made “immense social, emotional, and academic progress.” It called him “an exceptional math student” who “always cooperates with his teacher and students alike.” In science class, he’s created recycling projects and presentations on natural disasters.
And, it turns out, his teacher happens to be among 170 special ed instructors that according to district officials recently received ten hours of training on one of the new structured literacy curricula. It’s called SPIRE and the teacher wrote in her evaluation that Robinson’s grandson was making his way through the very first level.
Robinson is grateful for these changes. But, she pointed out, “I’ve been fighting for this for six years.”
That time lag matters. Her grandson just finished 8th grade -- at a 3rd grade reading level. His younger sister is even farther behind. Just beginning to teach them the foundations of literacy at this age, experts say, will take skill and experience that will be difficult to convey in ten hours of training.
At a school board meeting last February, OUSD Superintendent Kyla Johnson-Trammell acknowledged that the research is clear on the type of instruction struggling readers need in order to move forward. The hitch is training. Graduate programs need to be educating their students so new teachers come into the classroom with the foundational knowledge they need, she said. As for the district, she said all teachers need to receive the training and materials they need “to make sure that all of our students learn to read.”
And soon, Johnson-Trammell announced, “the NAACP is also going be raising up what we need to be doing differently around addressing dyslexia.”
The superintendent’s comments followed a unanimous pledge by the board to work with black and Latino families demanding “Literacy for All.” That campaign, launched by a grassroots parent group called The Oakland REACH, packed the board meeting that night to challenge generations of dismal reading scores -- and push for the needed literacy resources.
So Robinson’s kids are far from alone.
Kareem Weaver is a former Oakland educator who sits on the Oakland NAACP’s education committee and has been pressing the district to comply with state dyslexia guidelines. For starters, he said in an interview, perceptions of educators need to change.
“That gap between expectations and student performance, that’s the gap where assessment lies, where intervention lies, and where support lies,” he said. “And so unfortunately many of our African American students get lost in that gap.”
That in-person conversation the superintendent promised to have with Weaver and others from the Oakland NAACP about dyslexia hasn’t happened. Covid intervened. The pandemic has also cast an enormous shadow over OUSD’s budget, raising questions about whether more intensive training for teachers will fall off the agenda.
Weaver said there is no more time to waste. Teaching those foundations of literacy that work for dyslexic students to all young learners is key to making sure more kids don’t fall behind. Helping those who already are, like Robinson’s grandkids, is a greater challenge. But here’s a surprise: The district was once known for a reading clinic that did just that.
Launched in 2001, the Oakland Reading Clinic was highly regarded as successful. It opened at an OUSD school site, where students from as many as three dozen campuses were bussed in daily. Each received extensive instruction for nearly two full hours.
A district memo explains that the district opened the clinic to save money. Parents were lawyering up because their struggling readers weren’t making any progress. And OUSD was paying big bucks to send them to a private learning center in Berkeley that teaches a well-known structured literacy curriculum called Lindamood Bell. So, OUSD teamed with that center, which provided extensive training and as much as a year of constant mentoring to district literacy teachers at their own clinic.
One parent, whose daughter with severe dyslexia attended the OUSD clinic, tells me it was their godsend.
“It taught her how to sound out words. It taught her how to recognize the symbols,” said Jean Townsend of Oakland. It also taught her how to help her own daughter. That daughter is now in college, where she receives a slew of accommodations, including a notetaker, to which she is entitled under federal disability law. And when her daughter graduates, Townsend said, she wants to work in the juvenile justice system with youth whose own learning disabilities went undetected when they were in public school.
Like Robinson, Townsend is African American, and she said she had to be the constant “squeaky wheel” to make sure her child would not be abandoned to fail. But, she said, she also made it clear she was prepared to sue. And she had the means to pay for medical tests to persuade OUSD of her diagnosis, and for a private educational therapist for her daughter for two years.
Robinson doesn’t have those resources, and said she had never heard of the Oakland Reading Clinic. That may be because the district never flagged her grandkids for that kind of intensive reading remediation.
Three years ago, in the midst of a budget crisis, the district decentralized the clinic. The goal, the district spokesman said, was to serve more kids without having to put them on buses. Most recently, literacy specialists assigned to the clinic were traveling to see students at their own schools. But, several OUSD literacy experts tell me the intensity and scope of the clinic’s services have been in steady decline for the past few years. It’s now on hold for at least the next school year due to Covid, the district confirmed.
For Robinson, every week that passes without intensive help is cause for worry.
“That’s what I pray for every night, that a change will come,” she said “But I need some help for the change that will come.”
To compensate Robinson, records show, state education officials ordered OUSD to provide three hours of one-on-one tutoring for her granddaughter. Robinson said thet tutor had no training in dyslexia. The state ordered 20 hours of tutoring for her grandson. But OUSD has doubled that. Earlier this month a tutor -- who received the district’s ten hour training in SPIRE -- began working with him remotely, she said, starting over at Level 1.
Providing remediation to students who are far behind is far more costly than intervening when they are just learning to read. So short-term costs will likely be dwarfed by those to come. And Oakland Unified’s neighbor to the north offers a cautionary tale. A class-action lawsuit alleging the Berkeley Unified School District systemically failed its students with dyslexia for years is pending in federal court.