What is dyslexia? Not what you think, experts say
The definition of dyslexia is as elusive to the general population as the way to sound out a new or complex word is to people who have the condition.
Dyslexia may be among the most common learning disabilities -- it affects 10 percent to 20 percent of the population -- but it's also among the least understood, say parents in an advocacy group working with suburban school districts for greater awareness.
"It's complex, and that's one of the problems because every child presents differently," said Lisa Gardina, co-founder of Dyslexia Action Group of Naperville, who has a son in high school with the condition. "It depends upon their strengths as to how the symptoms come out."
That's why group members are meeting with area districts during October, Dyslexia Awareness Month, to encourage universal screening of students for signs of the condition and easier connections to supportive tutoring that can teach skills to overcome difficulties.
Schools are required by a state law updated in 2016 to screen students they suspect of having dyslexia, but the parent group wants that testing to be conducted for all to more quickly identify the condition that can cause ongoing reading struggles.
Dyslexia does not mean flipping numbers, reading backward or accidentally transposing letters, experts who counsel people with the condition say. By definition, it means "trouble with reading" or "trouble with words."
It signifies genetically predisposed neurological struggles with piecing together the root components of words, decoding them and sounding them out into cohesive units.
"I got that question today -- I was asked, 'Do you notice my kid flipping some of the letters?' " said Lillian Aldawoodi, a psychologist in Elgin Area School District U-46. "And I said, 'That's not what dyslexia is. It's more trying to decode the words and not making the connection between the symbols and the sounds.'"
Between 80 percent and 90 percent of people's brains learn to decode and sound out words quickly and fluidly without major difficulty. For others, the English language looks like one of those trick-messages that leaves the first and last letters of a word the same, but mixes up the insides -- only more confusing.
For a young person, it can make reading a tiring and nearly impossible task, full of new, unknown words, said Dr. Jill Dorflinger, a neuropsychologist at Amita Health Alexian Brothers Women & Children's Hospital in Hoffman Estates, who conducts tests to diagnose dyslexia.
People with dyslexia have average or above average IQs, Dorflinger said, so their struggles can perplex those trying to help, especially educators.
"In general, teachers aren't trained to identify or teach these kids," said Christine Pederson, a reading specialist who works in Grayslake Elementary District 46 and operates a Gurnee-based private practice called Learning Possibilities. "To be a dyslexia evaluator or practitioner is very specialized. It's not something that everyone gets when they go through school to be a teacher or work with kids."
That's why Gardina says students have to learn their own "life hacks." She said her son's include watching movies, referring to study notes or listening to audio recordings of the literature he's assigned to read and using speech-to-text technology for writing.
But before people with dyslexia can develop personal "hacks," they have to learn the language skills that don't easily connect in their brains. And before that, they must be identified as needing help.
That took at least three years for 11-year-old Vivian Hanson of Naperville, a sixth-grade student at Jefferson Junior High, who was diagnosed with dyslexia a year ago. Hanson's parents, Jenine and Ryan, said they noticed during their oldest daughter's early elementary years that she struggled with reading, and often would test in the 15th percentile for her grade level in that skill.
Yet her teachers said she was keeping up, and Vivian's grades proved them correct, her parents said. So they maintained their daily half-hour of reading at home and waited.
"She could read, but not fast, and she couldn't sound out words," Vivian's mother said. "I thought, 'Maybe she just needs more practice,' because that was the message from the school."
Eventually, a former teacher and neighborhood tutor the Hansons hired advised the family to seek neuropsychological testing for a learning disorder. After two days of testing at a psychology office in Naperville, which Vivian called "boring," a 20-page document came back with her diagnosis of dysphonetic dyslexia, a version that means Vivian struggles to understand phonics, connect letter symbols to sounds and sound out or spell whole words.
Now, Vivian's mother tutors her twice a week for 45-minute sessions using the Barton Reading & Spelling System to help her learn and understand letter patterns to improve her reading and writing.
The best learning programs are multisensory, says Maureen Olson, a speech language pathologist in Schaumburg Township Elementary District 54 who recently started a private dyslexia tutoring practice through the Wilson Language Training system. Proven programs involve tactile feedback -- tracing letters and words into whipped cream or sand -- as well as motion, sound and sight. The repetition inherent in hearing a word, saying it, tracing it and counting off its syllables also helps with learning and retention.
"It taps into different senses at the same time, "Olson said. "That just helps it stick."
• Systems following the Orton-Gillingham Approach, including Wilson Language Training and the Barton Reading & Spelling System, can be conducted by tutors or parents to teach students the language processing and phonetic skills they need to overcome the symptoms of dyslexia. Tutoring typically costs $50 to $95 an hour across the suburbs. To find a local tutor, search through Learning Ally, a national nonprofit organization that helps students with print reading difficulties, at https://learningally.org/Parents/Dyslexia-Resources/All-Resources/specialistListing?sid=IL.
• Brain Training, available at LearningRx Chicago Naperville, also can build those neurological skills. Programs to assist with dyslexia typically run two or three sessions a week for 24 weeks for $80 to $95 an hour. (630) 470-9631.
• Learning Ally offers audio books of more than 80,000 titles with digital texts to follow along. https://learningally.org/Browse-Audiobooks
• Google Read & Write, for Chromebooks, helps text-to-speech and speech-to-text assistance.
• Dragon speech recognition technology helps with writing and typing.
• Dyslexia Action Group of Naperville is a nonprofit organization that connects parents of students with dyslexia, advocates within schools and helps parents access resources. The group is hosting a dyslexia simulation to help people better understand the condition at 7 p.m. Tuesday at the 95th Street Library in Naperville, 3015 Cedar Glade Road. https://www.dagnaperville.com/
• Dyslexia Buddy Network, founded by a Winfield woman, aims to connect and empower Illinois kids with dyslexia through social events such as camps. http://www.dyslexiabuddynetwork.com/home.html
• Yale Center for Dyslexia & Creativity offers resources and advocacy for parents, educators and people with dyslexia. http://dyslexia.yale.edu/