The differences between Kelly Howard's twin daughters appeared in preschool. Katie easily learned her ABCs, but Zoey struggled.
Howard thought Zoey just needed more practice. It wasn't until halfway through first grade that Howard learned her daughter was profoundly dyslexic.
The neurological language decoding disorder affects one in five people, according to the Yale Center for Dyslexia and Creativity.
Despite its prevalence and a well-established base of scientific research, some Connecticut parents say they have trouble getting their local schools to recognize the disorder and provide their children with appropriate interventions and accommodations. People with dyslexia usually have average to above-average intelligence, but struggle to read due to the way they process language.
New legislation that went into effect in January adds a checkbox for dyslexia under students' individualized education plans, a step parents say will help schools focus on the disorder. Another provision of the bill requires new teachers to get training in recognizing and teaching students with dyslexia. That provision goes into effect in July.
In kindergarten at Bakerville Consolidated School, Zoey Howard had a hard time breaking words into their individual sounds.
"One day she'll know some of the words, and the next day it's like she's never seen them before," Howard said.
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At the end of kindergarten, the school evaluated Zoey for a learning disability.
"That's where our whole problem began," Howard said.
No one on the team had training to identify dyslexia, Howard said. The test was inconclusive. Zoey was placed in the special education program and got extra help with reading, but it wasn't working.
In January 2014, Howard spent $2,500 for Zoey to get an independent neuropsychological evaluation. The results came back in March. She was profoundly dyslexic.
"Basically, her first grade was a waste," Howard said. "No one on staff had right training to work with her ... It turned out they were doing the wrong things with her."
Since then, Howard said, she has battled to get her daughter, now in second grade, the services she needs. She has hired a lawyer and is filing a complaint with the state.
Carina Drake of Ridgefield learned to read through an Orton Gillingham program 20 years ago. The program dates back to the 1930s, she said.
As a child, Drake said, it was emotionally dark being the only student in the class who couldn't read, despite being able to understand everything else.
"We figure out ways to hide, to cover the disability, until you get called on to write something on the board, and that's publicly humiliating for that student," Drake said.
She went to a specialized school were there were other children like her.
"I felt like a great weight had been lifted," Drake said. "Knowing what it was and having that word was powerful for me. It got me out of feeling depressed and trapped and isolated on an island."
She eventually went to New York University and became a nurse.
Because of her own experience with dyslexia, Drake was on the lookout for the signs in her daughter, Kiara, now 7. Dyslexia runs in families.
As Kiara began kindergarten, Drake noticed her daughter writing words backward and having trouble reading. Kiara didn't learn the alphabet easily, didn't recognize her own name in print.
Drake got her daughter into an expensive private program for children with dyslexia. She said she paid $6,000 for a private evaluation, and her daughter started a reading program at her public school this year.
"Parents have to fight very hard to get it in the schools or we have to pay for it out of pocket," Drake said.
Most dyslexia students who get remediation before third grade learn to read and thrive, Drake said. After third or fourth grade, children with dyslexia need more accommodations as their neural pathways change and their brains become less pliable, she said.
For 18-year-old Lexi Hauck of new Fairfield, the diagnosis came too late.
Although she struggled in school since first grade, she wasn't diagnosed with dyslexia until her senior year in high school. She graduated from high school with the reading fluency of a second-grader.
"I'd read a page and not retain anything I just read. It would take me so long to do anything," Lexi Hauck said. "I couldn't tell time. I felt worthless."
Despite her difficulty, Hauck was an honors student, something that may have delayed her diagnosis.
When she finally got evaluated outside the district, the test showed she ranked in the first percentile and lower for reading, reading comprehension, fluency and mathematics.
"She was able to make it in a school system that did not help her with her learning differences, Sherryl Hauck said. "She has a 10-year gap to fill and she probably will never fill that."
Although the prevalence of dyslexia is equal between boys and girls, boys are diagnoses more often because they tend to act out more, according to Yale Center for Dyslexia and Creativity.
"I could've achieved so much more in high school if I knew," Lexi Hauck said.
Now she is a dance major at the University of Hartford's Hartt School.
"I would come home from a long day of not succeeding and not learning anything and I would go to dance and it would make me sane," she said.
The state will now track dyslexia as a separate category under learning disabilities, but data won't be available until data next January, according to state spokeswoman Kelly Donnelly.
Charlene Russell-Tucker, chief operating officer overseeing student supports for the state, said it's reasonable to expect a higher number of students diagnosed with a disability now that dyslexia is considered a primary category.
Although dyslexia was previously considered a learning disability, schools weren't specifically trained to identify it, Anderson said. She said the majority of students with a reading disability probably have dyslexia.
Wendy Owen, Waterbury special education director, said the legislation doesn't really change anything the district is doing.
"We have always been assessing for it," Owen said.
The test evaluates five critical areas for reading; phonemic awareness, phonics, fluency, vocabulary and comprehension. people with dyslexia usually struggle with phonemic awareness, the ability to associate letters with sounds.
Carl Gross, director of pupil services in region 1, said the legislation refocused the district's efforts to do comprehensive evaluations. About half the district's students with learning disabilities have significant reading decoding issues that are consistent with dyslexia, Gross said
A structured literacy approach, breaking down phonemic categories and looking at how letters and sounds come together is effective in teaching students with dyslexia, Anderson said.
