The cost of literacy: Overcoming learning disabilities

June 1, 2012

Julianne Hill

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On a late winter Saturday morning, Jacob Forst reads Tom Sawyer out loud off his father’s Kindle. The two cuddle on a brown leather couch in their apartment high above Chicago’s Lake Shore Drive.

But, every few words, Jacob, a tall, thin 9-year-old, struggles, as he tries to sound out unfamiliar words like “tears,” “yearning” and “recognize.”

Like one in five students, Jacob has language-based learning disabilities that affects his reading and writing abilities. His challenges include dyslexia, dysgraphia, slow processing and decoding issues.

Listen to Steve Edwards and Rod Estvan of Access Living discuss this topic on Afternoon Shift

From school to work: What's the cost of low literacy?

When asked what’s hard about reading, the fourth grader answers, “Sounding out words. Sounding out words, yeah. It shouldn’t. I just feel I have no time and I have to rush. So, it was hard for me to sound out words or read words or memorize words.”

He admits it is frustrating, adding, “I don’t fully understand dyslexia for some reason.”

Reading is not a simple process to understand. To make meaning from printed words, a reader first must associate sounds with letters. That’s called decoding. Next, a reader must coordinate the words they identify as they move from one word to the next. That’s called fluency. Then, comes comprehension.

Along with dyslexia, or troubles reading, Jacob has dysgraphia, or troubles writing. He started off at Francis Parker School, an exclusive private school on Chicago’s north side.

“Really, in 1st grade, we noticed that when they really started to teach the kids how to read that he was just struggling,” says Jacqueline Scott, Jacob’s mom. “He went to the learning resources center at his school there and got some help but it just didn’t seem to be helping fast enough. And he started withdrawing a little bit in the classroom, he didn’t participate much in class.”

Jacob’s mom admits the severity of her son’s problems caught them off guard. “He’s a really good student. He works hard but it’s just not coming. He was going to have to get tutoring at least three mornings a week. Then he’d have his lessons recorded and he’d listen to them at night and still do occupational therapy. So that was going to involve early morning as well as afternoon activities and that seemed an awful lot for a kid that young.”

The family worked with the school and tutors. Support ramped up, but still Jacob progressed slowly. The teachers at Parker felt they couldn’t give Jacob all he needed.

“They recommended that we send him to a school for kids with learning disabilities. And that was sort of hard for us to swallow,” Jacqueline says.  

The teachers at Parker recommended The Hyde Park Day School in Chicago. It’s a two-campus school, one building in a northern suburb and another in Chicago’s Hyde Park neighborhood. There are 100 students from 1st to 8th grade, meaning there are about ten kids per grade. Two teachers staff each classroom.

A school like Hyde Park sounded just right for Jacob, whose reading rate was falling at the 9th percentile but his reasoning skills were at the top of the charts. But first he had to get in.

All applicants must take neuropsychiatric exams – a battery of tests taking as long as eight hours.

“With a kid that age you have to take lots of breaks, and lots of incentives to go on. And it’s also expensive. Insurance doesn’t cover a huge part of it,” Jacob’s mother says. The test cost $1,500 before insurance.

Jacob’s dad is a lawyer. His mom is a philosophy professor. They have a comfortable home lined with books. But having educated parents with well-paying jobs doesn’t mean the family doesn’t have learning problems, it just means there is more money to help.

“I’ve always known that I’ve had some sort of learning disability so I wasn’t surprised when I saw it in Jacob,” Jacqueline says. Though her disability was never named, Jackie got help early on, improving her chances of succeeding.

Dyslexia and dysgraphia are never “cured.” But early intervention can help rewire the brain to accommodate the disabilities and help keep the kid engaged. It’s at this point that money and resources can make a difference.

Along with attending Hyde Park Day School at a cost of $35,000 a year, Jacob will have a tutor in the summer twice a week for a $100 a session. Jacqueline estimates handling Jacob’s reading issues probably ran a total of $40,000 this year.  

“Unfortunately money does come into play when it comes to this issue,” says Dr. Karen Rottier, the neuropsychologist who evaluated Jacob.

“Even though they were in a fabulous school, coming to me was a financial burden, which typically the full evaluations are not covered by insurance, the school itself is an out of pocket expense and then sending him off to Hyde Park Day School is another expense. So it’s a huge financial burden to the families. So it’s great that their family can afford this for him but unfortunately there are a lot of families that don’t have the resources to do this,” the Chicago doctor says.

She adds that children who receive services from Chicago Public Schools are “not to the level that I see for the families that research-based reading intervention.”

At Hyde Park Day School, Jacob breaks off into his reading group with three other kids at 9 a.m.

Beth Herdering is the reading teacher. The group works on sounding out words.

Jacob reads one of the pastel-colored flashcards. “A-l-l ball, all. Hmm.”

Beth says Jacob does have pretty severe decoding issues, especially spelling. “One of the things is he doesn’t always remember to listen to all the sounds in a word.  So when he’s reading words, he’ll often skip sounds, and when he’s spelling a word he’ll do the same thing. He doesn’t stop to think about every sound when he goes to write the word out,” she adds. “So with him, having the structured program is really important because has to constantly be reminded to sound things out letter by letter rather than just kinda thinking about the whole word at once and trying to write it.”

Hyde Park recognizes that child in the school has different educational needs and an individual learning plan, or ILP, is developed.

Jacqueline and David meet with the “team” at Hyde Park three times a year to discuss Jacob’s ILP.

“That’s with his reading teacher, sometimes his social studies or science teacher as well depending on when the conference is schedule, and  OT, social worker and principal and sometimes executive director depending how many people we can squeeze into a little office,” his mother says.

Since Jacob started Hyde Park, family life has changed and simplified.

“Basically, school starts at 8:15 and finishes at 2:30,” she adds. “He sees the occupational therapist there. They also have a social worker who does a type of group therapy there so they have a class that they take that is getting them used to having a learning disability and some of the other issues that might go along with that.  Also she’s available for one on one for kids who are frustrated, sad, angry. We’ve availed ourselves of all those services.”

When asked how Jacob has changed since entering the school, his mother says, “Basically, he can read. He reads with more fluency.

“He’s still below grade level. But it’s remarkable now. He is so much more confident about his ability to read and write and do his homework. The first year I’d have to sit w him to do his homework we had to have these incentives. He was often crying. Not because it was so hard but because he was scared of doing it. Now he’s like I have to do my homework he sits down and he does it. He knows his strengths. He’s good at math. He’s good at comprehension. He knows where he needs extra help,” she adds

She says the cost to send Jacob is well worth it. “He’s a different person now that he’s found a way he can learn and express his ideas. I don’t think you can put a price tag on that. We’re fortunate enough to have the money that it doesn’t cause us undo hardship to pay for this but it’s worth every penny,” she says.

When Jacob is asked how things have changed and what makes learning so much more fun, the 9-year-old responds: “I don’t know. It’s how they do it. It’s the magic. I really don’t know.”

Hyde Park has offered as much as $25,000 in scholarship to a family to help cover tuition. Still, specialized places like this are not an option for people who don’t have the means to cover the costs.