When her son was 2, Beth Coppoc Gunshor began noticing speech problems. He would leave off the initial sound in words like “train” and “bed” and, as he got older, he struggled to read, spell and find the right words when speaking.
“When you look up the early signs of dyslexia, he ticked all the boxes,” says Coppoc Gunshor.
She took her son to a reading specialist she found online, asked the family’s pediatrician for advice and eventually visited the Child and Family Psychological Services Clinic on the west side, where he was diagnosed with dyslexia in third grade. Now in eighth grade, her son reads at above grade level but writes below grade level. He also has trouble organizing his time and logically ordering details to support topics.
“I kept running into people who had the same issues,” says Coppoc Gunshor, a speech and language pathologist who runs BCG Language & Literacy LLC, a tutoring practice in Madison for children with dyslexia. “That is what drove me to my own practice.”
Confusion persists about the neurological learning disability, with some mistakenly believing that people with dyslexia possess inferior intelligence or can’t read.
The word “dyslexia” comes from the Greek roots “dys,” meaning “difficulty” and “lexia,” meaning “language.” The condition is hereditary, and symptoms can include reading and writing letters in the wrong order; trouble spelling and organizing words; and confusing such letters as “d,” “b,” “p” and “g” with each other.
“Dyslexia is a lifelong disability that affects major life functions,” says Nira Scherz-Busch, director of the Child and Family Psychological Services Clinic, one of the few facilities in the state that diagnoses dyslexia. Scherz-Busch helps patients get tutoring and jobs. “Dyslexia occurs in people all over the world, so we know it’s not just about the English language.”
Wisconsin is one of a handful of states without laws outlining how schools should help students with dyslexia. But that could change this year, now that a bipartisan committee has recommended the Legislature create a position within the Department of Public Instruction to hire a dyslexia specialist. It also recommends that DPI develop a guidebook for parents, guardians, teachers and administrators on dyslexia and related conditions. State Rep. Bob Kulp (R-Stratford) chaired the committee and his office says the legislation will be introduced early this year.
Kulp says the guidebook being proposed has been used successfully in other states. “That is why they have been jumping in rank above Wisconsin in reading scores.”
Until recently, the Madison school district didn’t talk much about dyslexia, says John Harper, executive director of student services for the district.
“Six years ago, we realized there were areas of special education that we were missing, and I felt like we needed to improve,” says Harper, a former special education instructor.
In 2017, the district hired a coordinator of multisensory reading interventions, who is helping dozens of Madison schools’ special educators and reading specialists better identify dyslexia symptoms and teaching them the time-tested Orton Gillingham reading method (which uses phonetics and emphasizes visual, auditory and kinesthetic learning styles).
“Dyslexia is now very much front and center for us,” Harper says, adding that as many as 130 staff members will be trained by the end of the 2018-19 school year. “I hope we can train the majority of our 400 special ed teachers at the elementary and middle schools, and a handful at each of our four high schools.”
But until all schools are on the same page, many students with dyslexia-like symptoms will continue to either be placed in special-education classes that may not address their needs or be left to struggle in silence.
“That’s pretty unnerving, considering that dyslexia is the most common learning disability,” says Jennifer Kelly, who lives in Brookfield and heads up the Wisconsin chapter of Decoding Dyslexia — a parent-led national grassroots movement concerned with limited access to educational interventions for students with dyslexia.
Wisconsin ranked 34th among all states in fourth grade reading results on the 2017 National Assessment of Educational Progress; the state was 25th in 2015, and state scores have been stagnant since 1992, according to the Wisconsin Reading Coalition, an organization championing scientifically-based reading instruction and intervention for Wisconsin students.
There could be many reasons for this, but the lack of a state program addressing dyslexia is likely one of them.
“Educators want to do a good job,” says Ann Malone, a Madison-based reading tutor and former speech and language pathologist who now sits on the board of directors of the Wisconsin branch of the International Dyslexia Association. “I’ve never meet a teacher who won’t go the extra mile for a kid who needs help and wants to be helped. But unless we really begin educating our teachers better, we’ll continue to have our reading scores slip.”
The Children’s Dyslexia Center-Madison is assisting Madison schools with their educator training program. As one of 42 such centers in 13 states, the independent, nonprofit facility provides free reading remediation to children diagnosed with dyslexia.
“We keep students until we find success,” says Kelly Kuenzie, the center’s director, adding that most students are enrolled for about two years and range from elementary school age through high school. “It’s never too late to improve.”
Additionally, the Wisconsin Institute for Learning Disabilities/Dyslexia in Madison uses an academic therapy model known as CLASS™ (which builds on the Orton-Gillingham method), and several private tutors in the Madison area also work with dyslexic individuals.
Experts warn parents and educators not to ignore early signs of possible dyslexia, which beyond the obvious reading-related symptoms can include anxiety and depression. Some people are able to hide their symptoms behind high IQs. “Trust your gut if you think things aren’t going the way you think they should, and keep asking questions,” Coppoc Gunshor suggests. “Don’t just think things will be okay, because sometimes they might not be.”
As a child, Larry Frank was inattentive in school and had behavioral problems. He eventually dropped out of UW-Madison because sitting in a lecture hall and trying to keep up with the instructor while taking notes became too arduous. He reluctantly entered the family’s concert promotion business, which in the 1970s and 1980s consisted of a lot of phone calls and handshake deals, with little writing and reading. He’s now the company’s chief operating officer.
Although the family business thrives, Frank still sometimes struggles with the disability. “Now, everything is done by email,” says Frank, 61. “It’s not unusual for me to get 150 emails a day, and it takes me to two or three times longer to read them and respond to them than other people — even if they’re only a few sentences. I come home exhausted sometimes.”
But he has come to appreciate a benefit of the disability, which is shared by many famous people. “With dyslexia, I truly believe you are given a gift,” says Frank, whose two children also have the disability.
“It helped me discover my hidden talent, which is art, and I keep an art studio. My son, Aaron, has a photographic memory and took up acting in high school and college, and my daughter, Sarah, relates well to other people and went into social work. Sometimes it’s obvious and sometimes it’s not; but there is a gift. Find it and leverage it.”
Kulp — who has three dyslexic children — is optimistic the Legislature will pass the proposals this year. “We’re moving the needle in the right direction,” he says. “But we’re not proposing dramatic changes that will upset local school districts.”
Passage of the bills would be a major step, according to local advocates. “Wisconsin as a state is not addressing dyslexia, so legislation really needs to be in place,” Kelly says. “We’re hopeful we can get legislation that will level the playing field for all children. Dyslexia does not have to escalate into a disability, especially if it’s treated before the age of 9, when brains are more receptive to learning.”
“Every parent wants the same thing for their kids — to read fluently and comprehend what they read,” adds Malone, who encourages parents and educators alike to get involved by joining an organization such as IDA Wisconsin, Decoding Dyslexia Wisconsin or Understood.org to learn more about dyslexia and become advocates. “We need new people to help us go out there and rattle cages. Change has to come from the grassroots level.”
Editor's note: This article has been corrected to reflect that the the Children’s Dyslexia Center-Madison offers free reading remediation to children, but not adults.
