In Ohio, parents demand change for dyslexic kids

When Gayle Long was a little girl, she struggled to learn to read. "There were three reading groups: The Rockets, the Jets and the Bluebirds," she recalled. She was always in the Bluebirds, the lowest reading group. "My grandfather would bring me books and I would write 'Rockets' on the front. I really wanted to be a Rocket."

Long says she never learned to be a great reader, but she got by. She grew up in the 1960s, attending elementary school when phonics was in vogue. Phonics is a method of teaching children to read by showing them how sounds correlate with letters. "I could use the rules of the language to decode words," she said. "And that helped get me through."

Long's four kids were taught to read differently.

"The teacher would show me a picture of a cat and then point to the word and say, 'Here's the word 'cat,'" recalled Emily, 22, Long's oldest. If Emily didn't know a word, the teacher told her to guess based on the pictures in the book. Emily was taught to read using the "whole language" approach, which encourages children to learn words by sight rather than sounding them out.

"They wouldn't acknowledge that he had a problem. They wouldn't say the word 'dyslexia.'" Christine Beattie

"I'd spend hours every single night trying to read," said Emily. But it just wasn't coming to her. Her sisters and brother struggled with reading, too.

Gayle Long's kids went to public school in Upper Arlington, Ohio, a suburb of Columbus. Long told the teachers her kids weren't learning to read but she says the teachers kept assuring her they were making progress.

Then after her youngest child went to kindergarten in 2008, Long decided to go back to work. She's a speech-language pathologist and she went to a professional conference to update her credentials.

There was a seminar about dyslexia, something she knew little about. "I walked into that seminar and I did not move for two hours. The woman who was standing up there and describing what dyslexia is and what dyslexics need was describing me and every single one of my kids," she remembered, her voice cracking with emotion.

She called her husband and said, "'I know what the problem is now.' It was an epiphany!"

Long requested a meeting with the staff at her children's school, Barrington Elementary. She was excited to tell them she'd finally figured out what was going on. But when she said she thought her kids were dyslexic, "People talked to me very tentatively and defensively and told me that wasn't necessarily true."

Other parents with children in Upper Arlington schools at the time described similar experiences.

When Christine Beattie went to the staff at Barrington and said her son Neil wasn't learning to read, "They wouldn't acknowledge that he had a problem," she said. "They wouldn't say the word 'dyslexia.'"

The same thing happened to Brett Tingley and Debbie Segor. Their kids weren't reading, and they thought dyslexia might be the issue, but school staff dismissed the idea.

Each parent felt a bit crazy for thinking something was wrong with their kids when the schools were telling them there wasn't a problem. "You trust your (school) district, and you look to them as the experts," said Tingley.

'They let my children suffer'

After the meeting where school staff dismissed the idea that her kids might have dyslexia, Long took things into her own hands. She got training in Orton-Gillingham, an approach to reading instruction proven effective for people with dyslexia. She learned how to administer a dyslexia screening test. And she read everything she could get her hands on. Long figured the school was being stubborn because teachers and administrators just didn't know much about dyslexia.

Then one day in 2010, sitting in a chair in her family room with her laptop out, she typed "dyslexia" and "Upper Arlington" into Google. "And all of these hits come up with a family named the James family," she said.

She clicked on one and started reading. It was a letter written by Cameron James to the superintendent of the Upper Arlington schools in 1996. It describes the ordeal he and his wife went through trying to get the schools to help their son Joe with his dyslexia.

The Jameses ultimately gave up on the idea that the Upper Arlington schools would teach their son to read. When Joe was in fourth grade, they sent him to a private school that specializes in teaching students with dyslexia. The letter was their request for the Upper Arlington schools to reimburse them for tuition. Federal law requires schools to provide children with disabilities a "free appropriate public education." Since Joe's education was not appropriate in the James's view, and getting him an appropriate education was not free, they wanted the school district to pay for it.

Reading the letter, Long was filled with sadness and rage. Several staff members who had dealt with the James case were still working in the school district. The idea that they didn't know about dyslexia was preposterous. "Upper Arlington knew," she said. "They knew and they let my children suffer."

Filing a complaint

Since the James's experience resembled what her family was going through, Long thought there must be others.

She asked her kids: Who are the other students struggling with reading? She got in touch with their parents and invited them to a meeting at her house in August 2010.

"My street was lined with cars," she said. More than 30 people showed up.

"We went around the room," said Tingley, who was at the meeting. "Everyone had experienced the same thing."

Their dyslexic kids were not being identified or given appropriate help. The parents decided to work together as a team, pooled their resources and hired a lawyer.

"I was not surprised that there was a group of students with dyslexia who were not getting the kind of instruction that they really needed," said their lawyer, Kerry Agins, who has represented several parents with dyslexic kids. Agins says typically, parents fight special education cases alone, seeking remedies one by one. Parents rarely fight cases as a group.

"It is very difficult when you have a law like the Individuals with Disabilities Education Act to find an issue that is systemic in nature," she said.

But Agins thinks public schools failing to address the needs of kids with dyslexia is a systemic issue, in Ohio and across the country. She urged the Upper Arlington parents to file a group complaint with the Ohio Department of Education.

Filing a complaint with the state is one way parents can allege a violation of special education law. The other way is to file a request for due process. Due process requests often end in settlements and commonly come with gag orders, which is what happened in the James case.

Agins's advice to the Upper Arlington parents was to file a state complaint because if they won, it could send a message to other school districts that they need to change what they're doing for students with dyslexia.

Nineteen people signed the group complaint, including parents, students and graduates of the Upper Arlington public schools.

The complaint alleged the school district was failing to identify students with learning disabilities. Federal special education law puts the onus on schools to find and evaluate every child with a disability. The complaint also alleged the Upper Arlington schools were using an evaluation and intervention process that delayed students' eligibility for special education services.

In August 2011, the Ohio Department of Education found the Upper Arlington Schools in violation of federal and state law when it came to promptly and properly identifying students with learning disabilities and finding them eligible for special education.

"We felt vindicated," said Beattie. "Like, we aren't crazy. We know what we're talking about."

A belief in whole language

In its decision, the Ohio Department of Education ordered a series of corrective actions. It included requiring Upper Arlington to train teachers and staff on how to identify and evaluate students with learning disabilities and how to teach children with dyslexia how to read.

Neither the district superintendent nor the special education director in charge at the time would agree to an interview for this story, leaving a critical question unanswered: Why didn't teachers and staff already have this training?

As for the unwillingness to identify students with dyslexia, Joe Keith, the school psychologist in charge of evaluating students for disabilities at Barrington Elementary when the parents filed the complaint, points to a lack of resources.

"A lot of the complaints you hear about schools — well, they're public schools and they only have so much. Knowing how many reading specialists you have, how many tutors that you have... You know, it's not an endless supply," Keith said, refusing to elaborate.

Agins, the attorney for the parents, didn't uncover any evidence of budget pressure but knows from her experience on other cases that finances are often one reason kids aren't identified. Nationally, the average cost to educate a student in special education is more than twice the cost to educate a child in public school.

"I have started to call it not dyslexia but 'dysteachia.' It's the teachers who are not giving the right kind of instruction." Brett Tingley

In Upper Arlington, there was another issue that may have contributed to how students with dyslexia were being educated: The school system was committed to the whole language approach when it came to teaching children how to read, says Keith, despite overwhelming evidence that whole language is ineffective. The whole language approach is especially harmful for students with dyslexia, research shows, because their brains require they be explicitly taught the ways that sounds and letters correspond.

Keith explained that the district's belief in the whole language approach meant that "when you had a group of students who needed a different approach, we did not necessarily have that readily available."

Parents claim the school district was blinded by its belief in whole language. "They thought whole language worked for everybody, so when they came across a kid who was struggling to read, it's like it was the kid's fault or something," said Long.

"I have started to call it not dyslexia but 'dysteachia,'" said Tingley. "The issue is not with the kid. The kid does learn differently, but the kid can learn to read. It's the teachers who are not giving the right kind of instruction."

Changing the way all kids learn to read

The parents who filed the complaint in Upper Arlington were emboldened by their win and wanted the school district to go beyond what the state was requiring, including screening every student entering the district for dyslexia. The school district now does this.

Additionally, parents convinced the school district to change how all kids are taught to read.

Recently, in a first- and second-grade classroom at Barrington Elementary, teacher Ashley Stechschulte held up a series of cards with words on them, and the children repeated after her as she sounded out the first letter sound.

"O Octopus ah!" the kids yelled.

The class soon moved to more complex letter-sound combinations. They discussed the word "sock." Stechschulte asked what the letter combination "ck" is called.

"A digraph," answered a student. A digraph is two letters that appear together but make just one sound.

Stechschulte then asked the class to consider the difference between the digraph "ck" and the digraph "wh," as in the word "whistle."

"Who can tell me what's the big difference between these two digraphs?" Stechschulte asked, and a little boy quickly answered.

The teacher was using "Fundations," a program based on the Wilson Reading System, a structured, phonics-based method that borrows heavily from the Orton-Gillingham approach. Fundations is commonly used with kids who are struggling to learn to read, but Upper Arlington has chosen to use this approach with all students to try to prevent reading failure.

For students who show signs of dyslexia on the screening test, there is more intensive, one-on-one tutoring available.

'They get it, and it's just unbelievable'

Kelli and Mark Trinoskey moved their family to Upper Arlington in 2016 because of the support the district now provides to students with dyslexia.

They lived in another Columbus suburb but felt their twin daughters — one who has dyslexia and the other who has an audio processing disorder that results in similar struggles with reading — were not getting the help they needed in the public schools. Within days of starting school in Upper Arlington, their daughter with dyslexia was getting one-on-one tutoring three days a week from a teacher trained in Orton-Gillingham.

"They get it, and it's just unbelievable," said Kelli, referring to the Upper Arlington Schools.

But the changes in Upper Arlington came too late for the Long kids.

The two oldest — Emily and Erik — graduated from Upper Arlington High School without ever getting the kind of reading instruction they needed. Long and her husband were determined to make sure that didn't happen to their younger girls. So they sent them to Marburn Academy, a private school in Columbus for students with learning disabilities.

The youngest, Caroline, started at Marburn in first grade in 2009. Within a few weeks, Long says she was reading. "Really reading," she said. "Not looking at pictures — there were no pictures — and not guessing. She was pairing letters with sounds and blending the sounds together to sound out the words on the page."

Long says by the holidays that year, Caroline was sitting on her oldest sister's lap and reading a book to her. Emily, who was 14, looked up at her mom and said, "Why didn't anyone ever teach me to read like that?"

"That's a very good question, Em," Long replied.

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