HARTFORD — Beth Lehn’s sons constantly struggled with reading in school, but their district never diagnosed them with a reading disability.
That changed when they moved to Milford last year, Lehn said, when her sons were in fifth and seventh grades. Their new school district immediately told the family that the two boys had dyslexia.
“That was, as you can imagine, very upsetting because they went for so long struggling and struggling and struggling,” she said.
A year later, Lehn said, the change has been amazing. One of her sons, she said, went from being three or four grade levels behind in reading to just one grade level behind.
Still, she said, she wished she had known sooner.
“It impacts everything,” she said. “It’s not just reading, it’s also social studies, sciences. And it hurts their self-esteem when they see other people that don’t struggle. Self-esteem as a little kid — it’s very important,” she said.
Lehn was part of a parent group in support of legislation calling for more uniform ways to evaluate and provide services for dyslexic students, and improved training for teachers with students with reading disabilities. Their most recent achievement was the creation of the newly opened Office of Dyslexia and Reading Disabilities, which parents, legislators and teachers gathered to celebrate on Thursday.
The Office of Dyslexia and Reading Disabilities was approved by the state Legislature in 2021 and scheduled to open in 2022, but multiple delays in staffing pushed its opening date back.
Allison Quirion, founder of the advocacy group Decoding Dyslexia, told CT Examiner she was “optimistic” about the office, despite the delays.
Quirion’s son, Jack, told the group at the State Capitol that he finally learned how to read in eighth grade, after leaving public school in fifth grade. At the time he left public school, he was reading at a pre-K level. Now, he said, he’s in college.
“I would like to say again, I’m in college,” Jack said to a room full of applause. “I had to say it a second time because when I was younger … college was not on my horizon line.”
Jack said things started to change for him once he was diagnosed with dyslexia.
“I walked out of the testing room and finally felt good about school. Since before that, everyone would tell me I wasn’t trying hard enough,” he said. “I hated that, because the one thing both my amazing parents were telling me while dropping me off at school was, ‘Try your best.’And that’s what I was doing. I was trying.”
‘He’s behind, but he’s not that bad’
While working as a corrections officer, State Sen. Cathy Osten, D-Sprague said she would often see young people in prison who had dyslexia or autism, but had never been diagnosed by their school districts.
“That means these young people went through school without even a fair chance to make it to the next grade. And I think a lot of times that’s because schools didn’t want to test … they didn’t want to have one more special education student. But truly, that is a crime against our youth,” she said. “No child should end up incarcerated because they weren’t properly tested in school.”
State Rep. Mitch Bolinsky, R-Newtown, told CT Examiner that the new office’s goal was to ensure all school districts had access to resources and best practices for educating students with dyslexia.
“The most important thing in the world is early detection,” Bolinsky said. “Because the earlier we detect, the earlier we intervene, the better the outcome always. Because it’s easier to make a quick adjustment in the way somebody’s learning than it is to remediate them after they’ve been left behind.”
Kara Dogali, another parent who has two sons with dyslexia, said it took a long time to get diagnoses and services for her older children.
“It wasn’t like a stigma, but it was almost like no one wanted to say it was something other than, ‘Oh, well, they’ll catch up’ or ‘It’ll be OK,’” Dogali told CT Examiner.
Dogali said she only became aware that her older son might be dyslexic when her younger son, then in first grade, was diagnosed. By that point, she said, her older son was 11 years old.
“It was hard because he struggled in reading and we could see him struggling a little bit, but those test scores always came back amazing. And everyone was like, ‘Oh, he’s behind, but he’s not that bad.’ And so then once we got my younger son diagnosed, the similarities were just glaring, but it took a whole year, all of fifth grade, pressing the school system to evaluate for dyslexia,” she said.
Dogali said she hopes the new office will help with access to testing, as well as give teachers better training in dyslexia. Because her sons are still in elementary school, she said, a lot of the responsibility falls on their classroom teachers. She also said getting access to testing in a public school shouldn’t be difficult.
“What I found is that you don’t really know the questions to ask to get your kid evaluated,” she said. “If you don’t talk to other people that are going through the same thing, then you’re just not going to know the questions to ask, or what to do, or what your rights are.”
Jule McCombes-Tolis, bureau chief for the Office of Dyslexia and Reading Disabilities, told CT Examiner that the office’s strategic plan was based on testimony that teachers, parents and students had submitted over the last decade to advocate for dyslexia-focused legislation.
“Everything from children talking about feeling stigmatized because of their dyslexia, feeling that their teachers don’t understand how to help them, that some of the behaviors that they demonstrated in the classroom — like slow reading, or slow work completion, or incomplete work completion — was in some way related to intentional behaviors.”
Teachers, she said, talked in their testimony about how they don’t generally receive training in helping children with dyslexia.
“And that they want that training, they need that training,” McCombes-Tolis said. “It’s a very daunting feeling to come to work every day and not feel prepared.”
‘You take their failure personally’
Under state statute, the office is responsible for evaluating teacher education programs to ensure they include instruction in “structured literacy,” and how teachers can recognize and address dyslexia in students.
Devin Kearns, an associate professor of special education at UConn’s Neag School of Education, explained that “structured literacy” is an evidence-based practice that teaches children to read by sounding out words — “phonics.” He added that children should never be asked to guess a word by looking at a picture.
This practice is best known as a part of Lucy Calkins’ balanced literacy curriculum, which has sparked controversy across the country since the publication of a widely viewed podcast criticizing the practice. Calkins has since revised the curriculum to include phonics.
“The science of reading is not often used in classes. Structured literacy is rarely taught in classes,” Kearns said.
Kearns told CT Examiner that the office aims to standardize how teacher education programs address dyslexia, and ensure that their methods are evidence-based.
“Some programs are doing a great job of that, and other programs are hardly doing it at all,” he said. “And the result is, a lot of teachers are not prepared to teach students with dyslexia.”
Vacianna Spaulding, director of special education in Middletown, said she only had one teacher who gave her instruction in evidence-based reading practices in the entirety of her education. When she found herself in her first special education classroom as a teacher — one with 38 students, the vast majority of them with a reading disability — Spaulding said she lacked the resources or training to help them.
“As a teacher, you start to blame yourself. I know I did … for not being able to meet the needs of your students. You take their failure personally,” she said.
‘Not just a literacy issue’
Besides evaluating teacher education programs, McCombes-Tolis said another goal of the office is to take a closer look at how students are identified with dyslexia, how that data is reported, and to create a standardized way to identify these students.
“There’s a lot of confusion in the field, and I’m hearing from districts that folks are using many different approaches to support identification, so we want to streamline what’s happening in the field,” she said.
According to current data, less than 1 percent of Connecticut students are recorded as having dyslexia, although McCombes-Tolis said she suspects this is an undercount based on the way the data is recorded. Comparatively, anywhere from 5 to 20 percent of students nationwide are diagnosed with dyslexia.
The data also shows large racial discrepancies, with white students 2.5 times more likely to be diagnosed with dyslexia compared to Black and Hispanic students.
And even for students who are diagnosed and given accommodation, it’s often not enough to bring them to an acceptable level of reading. McCombes-Tolis said in 2021, about 75 percent of students in third and sixth grades who were diagnosed with dyslexia did not meet the state standard for reading.
McCombes-Tolis said part of the office’s work will be to improve the performance of these students. She told CT Examiner the impact of untreated dyslexia is lifelong.
“It’s not just a literacy issue,” she said. “It becomes an issue of identity, of safety, of independence, of employability — things like that.”