Dyslexia diagnosis brings hope, struggle to find treatment

Published: May. 24, 2018 at 6:43 PM EDT
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(05/24/18) - A Saginaw Township family is sharing its struggle to find the right treatment for a learning disability in hopes of helping other families in the same position.

"When we learned that John had dyslexia I assumed it would be easy to find help for him, and that wasn't the case," said Erin Carlson, mother to nine-year-old John.

John is the second oldest of five boys. Andrew is 11-years-old, Blaine is seven, Gavin is four, and Louis is 11-months-old.

For Andy and Erin, watching their second oldest enjoy a book brings back good memories.

"John from a really early age loved books. He devoured them. He wanted me to read to him all the time," Erin said.

But as kindergarten inches closer she grows concerned. "I started to get a little bit nervous because he could not recite his ABC's."

Time after time Andy and Erin are reassured it would soon 'click' for John as each child develops at their own pace.

His kindergarten teacher says he's engaged and curious but she notices the struggle too.

"He is showing some difficulty with early reading, with his letters, with his sounds," were concerns Erin said John's teacher expressed to them.

In between kindergarten and first grade John began to work with a tutor. At the time he still loved being read to, but he often made excuses when asked to read to his parents.

"If he heard a noise in the other room he was, you know, running off to go see what it was. He would have a hard time keeping his place on the page, he always had to use the bathroom or get a snack," Erin said.

He made progress in each grade, but not enough. "I think it was at about second grade that I started to notice the frustration level in John was growing exponentially," she said.

Results from a standardized test at school, with single-digit percentiles in reading, were a turning point.

"What I was looking at on this piece of paper was not representative at all of the knowledge that I knew was inside of his brain," Erin said.

It was in second grade that the Carlsons paid $350 to have him tested for dyslexia. The results showed John is a dyslexic learner.

"Dyslexia is average to above average intelligence, but difficulty with language," said Nancy Williams, director of the Children's Dyslexia Center of the Great Lakes Bay Region.

John said he could look at the same word several times and it would never look the same. "It was like I was looking at a book that was written in a different language," he said.

Like most parents, Erin and Andy did their homework and learned about the Orton-Gillingham approach.

In school his teachers were encouraging and supportive, and did spend extra time with John.

His school offered accommodations to help with dyslexia including having someone read standardized tests to him.

But Orton-Gillingham, the specialized language instruction his parents felt was best, wasn't an option in the school.

After looking for an after-school tutor in the Saginaw-area with no luck, they found a Flint-area center which could help.

But it would have been a struggle for the entire family.

"It's about 50 minutes away, and pay $5,000 a year for two years," Erin said.

Thankfully a friend told the Carlsons about the Children's Dyslexia Center inside the Bay City Scottish Rite Masonic Center.

It's funded by the Scottish Rite Masons and community support.

For families there's less sticker shock at the center.

When Erin asked how much it would be, she was surprised with the answer. "It's free. And I kind of had to pause for a second and I said, 'it's free'," Erin said.

While on the wait list to get in to the program, which at the time could only serve a couple dozen students, John began to work with tutor Margie Phillips at her home.

Phillips said John was typical of her students. "Very shy, his head down, unsure of himself."

Dyslexia is about more than not being able to read. It's the foundation to education, social skills and more.

"I'm looking around as I see all my friends reading these interesting books, and I'm stuck here reading 'Little Critter'," John said, referring to a series of books which did not meet his grade level.

"There were tears. I remember times when he told me he didn't think he was smart, and there were times when I could tell that his confidence was shot," Erin said.

Williams explains while most people have an internal dialogue which helps them figure out unfamiliar words, people with dyslexia see those same words and just stare at them.

The Orton-Gillingham approach works to change what happens when they see words.

"The beauty of this is it's one-on-one, and you can actually, if a kid, a student needs to back up and start over and do something again, you can do that," Phillips said.

Most dyslexic learners use the right side of their brain.

"We actually create new neuro-pathways to the left side of the brain, the language centers of the brain, and we do that through motion, moving, visual, auditory, multi-sensory," Williams said.

From a balance board to a tray of sand, there are several ways John learned to use his entire body to understand language.

"There's nothing they can do to decode the word, so we do a lot of talking out loud," Williams added.

Muscle memory helps engage his brain too. "So when you're writing it down on a piece of paper, you're, 'oh, how, what was this?' You can go and tap it back out on your arm and you'll still remember it," John said.

There's also a focus on language roots from Latin to Greek and more.

"Rupt means to break. So I'm able to figure out the word rupture. Which is just a humongous help," John said.

"They understand why English is happening the way it is," Williams said.

After about two years at the center John's test scores skyrocket from the single digits to the 80's.

"For the first time I'm actually able to read above my grade level. So I'm able to go to the library, pick out the books I enjoy, and read them," John said.

Finally, Andy and Erin's little boy who loved being read to has grown to love reading.

John will graduate from the program in August.

It's progress Erin noticed from the very first tutoring session. "And he said, 'I was reading a book'. And he said, 'it was fun, I liked it'. And I just wanted to cry right there because I thought, it should always be fun."

Williams and her team are working to make the Orton-Gillingham approach more widely available.

The number of students the center accepts has expanded as more tutors become available.

Erin became a tutor too, inspired by her family's struggle to get the right help.

Next school year for the first time the center will be working with the Clio Area School District to introduce the approach in classrooms.

Erin said John will always have dyslexia and will read slowly, but he now has the tools to understand and enjoy language.