Lake County Illinois parents, lawmakers target dyslexia

October 25, 2013|By Kristy MacKaben, Special to the Chicago Tribune

Kathi Keane of Grayslake says she's been fighting for years to get help for her 10-year-old daughter Grace's dyslexia.

By the end of the third grade, Grace was placed on an individualized education

 plan, but Keane said the interventions didn't work.

"They didn't want to recognize the dyslexia problem," Keane said of her daughter, who's now in fifth grade.

Dyslexics struggle with the mechanics of language and are unable to make the connections needed to decode words, according to advocates.

Keane and a group of about 20 other local parents have joined a burgeoning national movement—Decoding Dyslexia—which launched last year in New Jersey and has spread to 38 states. The mission is to pass legislation to secure more services for dyslexia and raise awareness of the learning disability, and a few Illinois legislators have joined the cause.

State Rep. JoAnn Osmond, a Gurnee Republican, and state Rep. Patricia Bellock, a Westmont Republican, filed a bill Oct. 15 requiring public schools provide screenings for kindergarteners who exhibit signs of dyslexia.

"According to my bill, at this point, every child would be checked in kindergarten if there are indications they might be dyslexic," Osmond said, admitting she was unsure what funding would be needed to implement the programs required through the bill.

State Sen. Melinda Bush, a Grayslake Democrat, is expected to soon introduce a resolution declaring "Dyslexia Awareness Week" in Illinois.

In January, Bush said, she's also hoping to propose legislation to mandate school districts test students early for dyslexia.

"There's not enough being done. I think there is a problem and I think we can do a better job of identifying dyslexia," said Bush, explaining she wants to make sure she doesn't create an unfunded mandate. "The important piece is making sure there's early detection."

Parents of children with dyslexia say if kids do not receive services early enough, they could fall behind for the rest of their school career.

"Schools don't recognize dyslexia. I don't really understand it," said Angela Baronello of Antioch. "It's not recognized in the school education code, even though it's the most common learning disability."

School officials say, however, they cannot diagnose dyslexia, and they can't provide services unless students are found eligible in one of the 13 categories of learning disabilities in Illinois.

"Before students can receive services, they have to be found eligible," said Ann Scully, director of student services for Antioch Community Consolidated School District 34.

If students are found eligible, an individualized education plan is developed.

"You're looking at present level of functioning. Then you're looking at specific needs. You're looking at strengths and deficits," Scully said. "It's individualized and student-specific."

Baronello said that about 20 percent of people in the United States have dyslexia—a language processing disorder, but the disability is often misunderstood and services are lacking.

Though Lucas showed signs in preschool of dyslexia — speech delay, trouble learning letters, unhappy at school — he wasn't diagnosed until the end of first grade, his mother said. The Baronellos eventually sought out a neuropsychologist who determined Lucas was dyslexic.

"We were lucky his father and I were persistent. Many don't find out what is going on until third or fourth grade when they are so far behind the school can't ignore it anymore, or worse, they never find out," Baronello said.

The problem in Illinois, parents say, is dyslexia is not listed as a learning disability in the education code. Instead, dyslexia is included under "specific learning disability" for understanding and using language, said Elizabeth Hanselman, the assistant superintendent of specialized instruction, nutrition and wellness for the Illinois State Board of Education.

"It's not identified as a stand alone disability," Hanselman said. "It's already counted in the category of specific learning disability."

But parents want more.

Unless dyslexia is listed as a distinct learning disability, they say, it is difficult to get services for children who are dyslexic but high-functioning in other areas, which advocates say is often the case.

"Their brain is fully capable of learning. This is a very high-functioning brain," said Lisa Stankus, director of Road to Learning, a Lake Zurich-based tutoring service specializing in helping children with dyslexia.

Stankus, a special education teacher, started the tutoring program in 2005 for students at Quentin Road Christian School in Lake Zurich. Because of demand in the area, the program was opened up a year later.

"These are incredibly bright people who have contributed to society for many, many years, but there is often a delay in their response when it comes to language," Stankus said.

Dyslexic children are often gifted in other areas such as math, art or athletics, but have difficulty decoding language, advocates say.

"A lot of times students will take tests and they are 140 in math and 98 in reading and the schools will say they're average and that they don't need to provide anything," said Ben Shifrin, member of the executive board for the International Dyslexia Association. "It's very limited because it doesn't fall under a handicap. Some people don't believe in dyslexia."

A regular education program in reading will not be effective, so special services are needed, Shifrin said. Early intervention can make a huge difference because children can be given learning accommodations, often using technology, and, eventually, the children will learn to adapt, he said.

"It's not cheating," Shifrin said. "It's leveling the playing field."

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