Entangled in the words, and in the system
Students with a common disability can learn to read with the right instruction, but many Massachusetts schools don’t, or won’t, provide it
‘She’s getting on that bus every day ready, willing, and able to learn. And she’s not.’
JESSICA CLARK, on the struggles of her daughter in Maynard
Eleven-year-old Parker Goldman knew he was different. A natural-born engineer, he had a mind teeming with ideas — a fix for his classroom’s broken faucet, a pulley system for his bedroom door. He re-imagined movie endings and conjured new TV plot lines. But when it came to writing his thoughts down, Parker couldn’t form the words.
While classmates at his Hingham elementary school devoured chapter books during silent reading time, he thumbed through the same picture book again and again. He could barely read.
Parker has dyslexia, a common learning disability that can make reading difficult. That shouldn’t have prevented him from keeping up with his classmates, though. Kids with dyslexia are no less intelligent than other children. They simply need tailored teaching, sometimes lots of it. But Parker’s school wasn’t giving him enough of the help he needed, an omission that battered his self-worth and cast a cloud over his ability to succeed — at school and, ultimately, in life.
Parker’s situation would be a difficult personal tragedy if it were unique. But he is one of likely many thousands of children with dyslexia who are in the same boat in Massachusetts, representing an enormous shortfall in the state’s duty to teach its children to read. Despite a federal law that promises all students with disabilities free, appropriate public education, school after school is failing to ad
dress — or in some cases even acknowledge — the needs of dyslexic students, an investigation by the Globe’s Great Divide education team found. Too often their disabilities are ignored or given inadequate attention. With their children’s future livelihoods at stake, some parents who can afford it fight long, lonely, and devastatingly expensive battles with schools, trying to persuade them to provide the instruction their children need. Others are simply overwhelmed.
It’s a “broken system,” said Nancy Duggan, executive director of the advocacy group Decoding Dyslexia Massachusetts. “If you don’t have the money to fight to get an attorney, and an expert, and a year or two of your child’s life to waste — because it takes that long — you don’t get any help.”
For this story, the Globe interviewed more than 100 educators, advocates, and parents of dyslexic children. Additionally, more than 200 parents from 97 school districts completed a detailed Globe survey in which they described a phalanx of problems getting help for their children, often with cascading personal consequences, including financial ruin and marital strain, as well as severe depression and anxiety in their kids.
With the right intervention at an early age, many dyslexic students can become capable readers relatively quickly. Without it, they can rapidly fall into a rut of repeated failure. In Parker’s case, help arrived late, and even then it was too little. School became miserable. One teacher avoided calling on him in class altogether. Another complained she could not decipher his writing because it “wasn’t English.”
He withdrew into video games, stopped trying to make new friends. Collapsing into his mom’s car at the end of a school day, his whole body shuddered with relief.
“I hate school it is so hard,” Parker scrawled one day in his sketchbook. “I want to quit. I fell deprest very deprest.”
In the simplest terms, dyslexia is a difference in the wiring of the brain that makes it difficult to read and spell. Because this neurological wiring affects the ability to process language, most dyslexic students find it hard to associate sounds with letters. Some struggle to quickly recall words they’ve seen before. This leads to slow and stilted reading, which affects comprehension.
Typical reading “is smooth and glides along,” said Sally Shaywitz, cofounder and co-director of the Yale Center for Dyslexia & Creativity. “If you’re dyslexic, you really have to put all of your energy, all your attention, and work at it.”
Experts say 5 to 20 percent of children have some form of dyslexia, which could mean up to 180,000 dyslexic students are enrolled in Massachusetts public schools right now. The state doesn’t know for sure because it doesn’t count them.
Even before the pandemic disrupted learning, students with “specific learning disabilities,” a category that includes dyslexia, fared terribly on state reading tests: Just 14 percent of those students in grades 3-8 passed the English Language Arts MCAS in 2019, a Globe analysis found.
Dyslexia cannot be cured. But research shows that a type of reading instruction known as “structured literacy” can help rewire a dyslexic brain. This approach teaches phonics — the rules governing the letter-sound combinations — slowly, systematically, and repeatedly, building from simple lessons to more complex ones.
Thorough, consistent structured literacy instruction in regular classrooms, which is important for all beginning readers, can be sufficient for children with mild dyslexia. As the Globe has reported, however, many schools in Massachusetts don’t even provide that, though the state is nudging them to do better. Children with moderate to severe dyslexia typically need intensive reinforcement of phonics rules in small groups or tutorials, sometimes for months or even years.
Those kids first need to be identified, ideally when they’re very young. Massachusetts has only recently made big strides in this direction; starting this past fall, thanks to a 2018 dyslexia law, all K-3 students must be screened twice annually for reading problems.
In a state that prizes local control, however, there is no universal system for teaching dyslexic students once they are identified. No one is even trying to design that system — Russell Johnston, the state’s deputy education commissioner, says that because special education is supposed to be tailored to individual students’ needs, each of Massachusetts’ roughly 300 districts should make its own decisions, one student at a time.
“The state doesn’t decide what type of programs every district should offer, because we really want districts to be looking at the individual child,” Johnston said.
At the local level, though, these decisions are often constrained by the resources schools have available. To really respond to kids’ individual needs, schools need armies of highly skilled reading interventionists. Training new teachers — and paying for very small classes or tutorials — is extremely expensive, and there aren’t enough specialists to go around.
Beverly Public Schools Superintendent Suzanne Charochak lauded the state’s new early screening requirement but said it “just didn’t come through with funding to adequately support the increase in services that are going to be called for.”
In fact, the 2018 law did not come with any funding to teach dyslexic students. And with limited special education budgets, administrators tend to prioritize students with the most visible needs, like physical impairments, severe intellectual disabilities, and autism.
“A dyslexic kid is just not likely to be at the top of the funding list,” said Steve Wilkins, former head of the Carroll School, a private dyslexia school in Lincoln.
Still, the state has a federal obligation to ensure districts aren’t shirking their responsibilities to dyslexic students. Its record is mixed.
While the state Department of Elementary and Secondary Education has some dyslexia initiatives — including voluntary guidelines for districts that include general advice for identifying and teaching dyslexic children and optional training courses for teachers — critics say it has been extremely lax in its oversight of districts’ provision of services to dyslexic students, so much so that Massachusetts is now subject to a broad federal inquiry into its special education practices.
Ben Tobin, a private dyslexia interventionist and special education advocate in Western Massachusetts, said the state is failing to protect “something vital” when it declines to step in on these children’s behalf — a failing that he said would not be tolerated in other fields.
“If our doctors and nurses were not accountable,” he said, “people would be raising a pretty big ruckus.”
All this puts a huge burden on parents, forcing them to take on what can amount to fulltime jobs as advocates for their children, pouring money and time into fights with school districts, and often hiring expensive outside help, including lawyers.
Wilkins put it this way: “The system is rigged to favor people who, A, have the resources to fight the public school; B, have a sense of their position in society that, ‘Dammit, they deserve something!’; and C, the sort of lifestyle wherewithal to keep hounding the public schools until they crack.”
Engaging in that kind of struggle is about the last thing the Clark family dreamed they’d have to do to help their daughter Eloise learn to read. And even for them — a two-parent suburban household with a steady income — it was a fight they almost couldn’t afford to win.
From an early age, Eloise seemed a linguistic miracle. At 11 months old, she could already speak in full sentences. At one point, when she was hospitalized with a respiratory infection, doctors hovered around her crib to see, as one put it, “the baby with 10,000 words.”
But as she began elementary school in Maynard, she couldn’t seem to recognize any of those words on the page, said her mother, Jessica Clark.
Struggling to read in the first grade, Eloise bottled her embarrassment up during the school day, only to erupt in crying fits as soon as she got off the bus. Clark had noticed Eloise’s inability to sound out written words even in kindergarten, but Clark said the school had waved off her concerns, so now she requested that Eloise be evaluated for special education services. Dyslexia is often hereditary and Clark, who is dyslexic herself, suspected Eloise might have it, too.
Three months later, the school concluded Eloise wasn’t dyslexic and didn’t belong in special education, according to emails between the Clarks and the school. The Clarks didn’t believe it.
“She’s getting on that bus every day ready, willing, and able to learn. And she’s not,” Clark recalled.
And so, like many parents of dyslexic students, they paid for a private neuropsychological evaluation, testing Eloise’s processing speed, memory, and intellect. Three thousand dollars later, the Clarks had the results: Eloise was dyslexic.
Eloise’s school acknowledged the findings but would not use the term “dyslexia” in discussing her needs, Clark said. The school agreed to give the now-second grader a special education plan, but not the explicit phonics tutoring she needed, the emails show. The school didn’t have a trained interventionist.
At home, the Clarks watched Eloise fall apart. They overheard her ridiculing herself in the shower, parroting a scolding teacher’s aide: “Effective effort, Eloise! You can try harder!”
Exasperated, the Clarks hired an $80-perhour tutor. Eloise improved, but not enough — and the school still wasn’t providing the intensive phonics instruction that would help her, according to the email correspondence and Eloise’s assessment results. When the Clarks visited Eloise’s classroom for back-to-school night, they saw a wall covered with paragraphs about students’ summer vacations. Eloise had managed only: “I like cats.”
The school finally agreed to provide a tutor, but only after school, the emails show. Eloise, now a third-grader, felt she was being punished, seeing her classmates go home for the day while she had to stay and do extra work, so the Clarks reverted to their private tutor.
Riding in her grandmother’s car one day, Eloise said she had something to confess, something “really bad.”
“Gram,” she said tearfully, “I can’t read. I’m really, really stupid.”
The Clarks — who were not rich but had some savings; he owns a landscape construction and design business, she’s a real estate agent — decided the time had come to send Eloise to a private school for dyslexic students. Under federal law, school districts that cannot provide appropriate special education services to a student must pay for their education elsewhere. The Clarks hired a special education advocate, plunking down a $600 retainer fee to help persuade the district to pay Eloise’s $52,000 tuition.
The district initially refused, Clark said. She forced another meeting, and the district finally capitulated, according to a settlement agreement the district reached with the family, obtained by the Globe under the state’s public records law.
At the Carroll School, a nationally known dyslexia school where the student-to-teacher ratio is 3 to 1, Eloise finally received the one-onone phonics instruction she’d needed all along. Her reading and writing improved rapidly.
“She was smiling, she was standing up straighter,” and the “sparkle in her eyes” returned, Clark said.
But the battle with the school district wasn’t over.
At the end of the fourth grade, Maynard sought to bring Eloise back, saying it now offered a specialized class for dyslexic students and would no longer pay her private school tuition, emails show. The Clarks felt they couldn’t trust the public system or risk Eloise’s hardfought progress. So they hired an attorney at $375 an hour to keep Eloise at Carroll.
According to settlement records between the school district and the family, Maynard ultimately agreed to cover Eloise’s education through the ninth grade, the last grade offered by Carroll. The Clarks are paying out-of-pocket for Eloise, who is now in the 10th grade, to attend another private school, one with small class sizes. They also are now paying for Eloise’s 11
year-old sister Audrey, who is also dyslexic, to attend Carroll.
Robert Rouleau, principal of Green Meadow Elementary School, which Eloise attended through the third grade, provided a statement on behalf of Maynard Public Schools, though he noted he’s only led the school since 2020 — long after Eloise had left. The school since 2022 has begun using two state-approved early literacy screeners, worked with an education nonprofit to improve English language arts instruction, and certified all special education teachers in specialized reading programs, Rouleau said.
Watching Eloise, now 15, do her homework at the family’s high-top kitchen table, Clark has made peace with decisions her family made. “We got our girl back.”
But they did so at a steep cost: The Clarks’ 401ks are empty, and their college savings are nonexistent.
There are many reasons why the state’s public schools are failing to support dyslexic children, according to interviews with advocates, educators, and administrators.
Public schools just aren’t designed to deliver individualized instruction. They’re built to educate elementary students in classes of 18 to 25, and most schools lack the staffing and space to offer tutoring. Even sorting dyslexic kids into groups of three or four can be tricky, since their needs can differ widely, and kids with similar needs may be on different classroom schedules.
Support could be stronger in whole-class settings, too, but general classroom teachers often lack even basic knowledge about dyslexia. The state doesn’t require teacher preparation programs to include dyslexia training, and only two of the state’s more than 40 educator preparation programs, Gordon College and Bay Path University, are accredited by the International Dyslexia Association — the gold standard for measuring how well a program prepares new teachers to use structured literacy.
A system that puts so much of the onus on parents to be the experts inevitably leads to dramatic disparities.
Children in private dyslexia schools are disproportionately white, a Globe analysis of student demographic data found. In 2021-22, 80 percent of roughly 2,000 seats went to white students, who make up 55 percent of Massachusetts’ student population. Just 6 percent of seats went to Black students, and 6 percent to Latino students, even though they make up 10 and 25 percent of the state’s students, respectively.
In districts with many poor children, parents tend to have less money and time to fight sustained battles for their dyslexic students. Often special education services in these districts are lacking, too; in Boston, for example, the state has harshly criticized the district’s special education department for failing Black and Latino students.
Eleven-year-old Mason Marshall, a Black student in the Boston Public Schools, is a fan of trampoline parks and BU ice hockey games. He is in sixth grade, but he’s reading at a kindergarten level, according to his current Individualized Education Program, which outlines his special needs, his educational history, and the plan for his education going forward.
When he was in kindergarten, Mason’s school viewed his trouble following directions as a behavior problem, his mother said. Mason’s IEP shows BPS moved him to another school and placed him in a behavior-focused class typically reserved for autistic students — even though he was never identified as having autism, his mother said. He received no dedicated reading assistance, she said.
Distressed, his mother, Angela Marshall, found a relative who offered to pay for Mason, by then 9, to be privately evaluated at Boston Children’s Hospital. The tests determined he had a language-based reading disability and recommended dyslexia-focused interventions, Marshall said.
BPS moved Mason to a third school, this time to attend a class for children with learning disabilities. Initially, BPS staff agreed that Mason, then in the fourth grade, needed 90 minutes a day of individualized reading and writing instruction. But he was never scheduled for the proposed sessions, and the district eventually erased the obligation from his special education plan, according to his IEPs.
“What’s been done to him is a real injustice,” said Edith Bazile, a special education advocate working on Mason’s behalf who believes he has dyslexia.
Bazile met the Marshalls in June, when Angela called a city help line to fix a summer school busing snafu; Angela was directed to a local advocacy group, which referred her to Bazile. Reviewing Mason’s records, Bazile concluded the district changed his disability to justify transferring him to yet another new school — his fourth in seven years — this time, to a classroom for
kids with intellectual disabilities, a category separate from dyslexia.
She got the transfer put on hold and is now pushing BPS to pay for Mason to receive services he’s owed from a certified reading specialist.
Bazile sees Mason’s treatment and the color of his skin as “absolutely linked.” The testing BPS used to identify Mason as “intellectually impaired” rather than dyslexic, Bazile said, is now under scrutiny by literacy experts for racial bias.
“I would argue if he was a white student in the same situation he would have gotten services,” said Bazile, a former BPS special education teacher.
Lauren Viviani, BPS deputy chief of specialized programs who joined the district in summer 2022, said there has been a “marked shift” in how BPS is identifying and instructing dyslexic students over the past 15 months. BPS directs schools to identify dyslexia using the most up-todate methods, and increased teacher training is expanding the district’s capacity to provide dyslexia-specific interventions, she said. A BPS spokesperson said the district is “committed to making significant improvements.”
Parents whose native language isn’t English run into similar obstacles.
After Angelica Cortez’s family emigrated from Argentina a decade ago, her daughter, Florencia, struggled by the second grade with basic reading and writing skills. Rather than taking her concerns seriously, Cortez said, Florencia’s Lexington public school chastised the family for speaking Spanish at home. (Research shows strong native language fluency actually supports English development.)
It wasn’t until the end of elementary school that the school district acknowledged Florencia had a reading disability, her IEP from that time shows. But it didn’t specify that the disability was dyslexia. Cortez still doesn’t know if her daughter, now 16, is dyslexic. A recent school evaluation viewed by the Globe said Florencia had a moderate risk of dyslexia, but that more information was needed. The school did not tell Cortez what that information was, she said, or how to get it.
As a newcomer to the United States, “you don’t know the law, so you don’t know how to push,” she said.
Lexington Public Schools did not respond to requests for comment for this story, but officials there previously said the district adopted new early literacy screening tools in May to comply with state regulations and has worked with families to create a website providing information about dyslexia. Each elementary school has at least one part-time teacher trained in a dyslexiafocused reading program, according to the website.
Bellingham mother Susana Guerra found herself ordering special education law books to understand the rules and regulations governing her daughter’s education. Belleza, who has highfunctioning autism, showed signs of dyslexia in early elementary school; by the start of seventh grade, having not received the instruction she needed, Belleza was still reading at a secondgrade level, said Guerra.
Guerra said her advocacy eventually won Belleza a district-paid placement at a private school in Newton. But the experience was so harrowing she became a certified special education advocate, and now she helps other families find their way.
“This is our tax dollars. We’re paying for this,” she said.
But private schools can’t — and shouldn’t — serve all or even most dyslexic kids, said Josh Clark, chair of the International Dyslexia Association and leader of the Landmark School.
Perched above the gleaming Atlantic on Beverly’s rocky coast, Landmark is among the best private schools in the country for children with dyslexia. It enrolls more than 500 students in grades 2-12 from around the country — and the world. Students there jump multiple grade levels in reading in a single year. Nearly all get accepted to college.
“Ridiculous, right? The idea that we’re going to solve this problem by shipping kids off to a private school on the coast?” Clark said. “We could triple in size and still not be serving the kids that need to be served.”
Landmark, unlike public schools, can choose which children it accepts. Still, its track record proves dyslexic students can excel academically, and some districts, such as Hanover Public Schools, are hoping to mimic its results.
Hanover is one of 60 Massachusetts districts employing Landmark as a consultant in setting up their own “language-based programs,” which often entail separate classes for dyslexic students. Landmark’s guidance has been instrumental because the state provides none, said Kaitlin Morelli, special education director for Hanover Public Schools.
“There’s no criteria that we need to meet,” she said.
Charochak, the Beverly superintendent, said parent demand has led her district to try to mirror services provided at Landmark as well. But she worries that some parents, upon learning their child has reading difficulties, want to “skip a step” and request the most intensive services for their children before allowing schools to try other interventions, which could prevent children who truly need that level of help from getting it.
Many other districts also have separate language-based classrooms, but they are often lowquality or inaccessible, parents from various school districts told the Globe. Some are used as a catchall for kids with widely differing demands, overwhelming teachers and failing to meet anyone’s needs.
The state could be helping to set standards for these classrooms. It could also be leading an exploration of other public alternatives. New York City just opened its own dyslexia school. Other states, including Pennsylvania and New York, have charter schools that educate dyslexic students. Those options aren’t available in Massachusetts.
And in many parts of the state, parents feel like they are out of options entirely.
In Northampton, Diana Schwartz and Andrea Bertini don’t have many choices for their 12-year-old son, Charlie, who is dyslexic and reading several grade levels behind his peers. Northampton has no separate language-based classrooms, Schwartz and Bertini said, and the lone private dyslexia school nearby has just 13 students enrolled in elementary through high school.
Schwartz and Bertini have had to rely on the state’s formal complaint system. But in the 2022-23 school year, that system sided with school districts over protesting families in two out of every three complaints filed, according to data provided by the state Education Department. The couple’s luck has been mixed. When they filed a complaint while Charlie was still in elementary school, the state refused to even rule on whether Northampton was providing the boy sufficient reading instruction, documents show.
Joshua Dickson, Northampton’s special education director, said the district switched this year to a structured literacy curriculum for elementary students. He said the district has staff trained in proven reading instructional methods for dyslexic students and offers those interventions both in and outside general classrooms for children who need them.
This fall, though, Charlie started school with no reading support, according to his parents, prompting Schwartz and Bertini to file a new complaint with the state. After that, Charlie began getting reading help four days per week.
Given their experience, though, Schwartz and Bertini don’t have faith it will last.
“We’ll probably have to go through all of this again,” Schwartz said.
Hingham Public Schools, where Parker Goldman struggled to read, recently hired an interim special education director who is dyslexic. The new director, Barbara Cataldo, said that she was sorry to hear about Parker’s experience and that the district is making changes to improve its dyslexia programming.
Parker, meanwhile, has grown to embrace his dyslexia, instead of hiding it.
Now 15, he is earning all As. He gave a speech at his eighth grade graduation last spring. He played on the soccer team this fall. He’s back to his old outgoing self.
But it took his family saying goodbye to the life they’d built in Hingham to get him to that point. Before his seventh grade year, they picked up and moved to Rhode Island so he could attend a dyslexia program at a private school in Providence they could afford.
His mother, Sarah Goldman, feels guilty that other families are stuck, unable to make the choice they made. But she has no regrets.
“Change just could not happen fast enough for our family,” she said. “And we had to go.”
Coming tomorrow, the fourth installment of the Globe’s literacy series: What it feels like to be a functionally illiterate teenager. Mandy McLaren can be reached at mandy.mclaren@globe.com. Follow her @mandy_mclaren.