Thursday, November 1, 2012

Teen With Cerebral Palsy Bridges Gap For Those With Disabilities

Teen With Cerebral Palsy Bridges Gap For Those With Disabilities

November 1, 2012
By Lissa Blake

Imagine having to play charades all day in order to get others to understand you.

That’s what life is like for Lydia Dawley, a sophomore at Decorah High School who suffers from cerebral palsy.

“It’s very frustrating,” said Dawley.

But although Dawley is confined to a wheelchair, she doesn’t let it get her down – or even slow her down. Dawley is becoming an outspoken advocate for persons with disabilities, presenting to college classes, at political forums, symposiums and conventions.

“Making your voice heard is only one part. The wheelchair doesn’t define me. It means you have to do things differently, not that you can’t do things,” she said.

Dawley recently returned from a trip to Des Moines, where she was a special guest at the Midwest Association for Medical Equipment Suppliers (MAMES).

Dawley, who dreams of someday being a lead advocate for persons with disabilities, said she enjoyed having the chance to meet Congressman Tom Latham.

“I feel so honored … I was so interested in listening to what he was saying and learning so much more about government and what I can do to help make a difference for others. I have already started writing some letters,” she said.

While Lydia is non-verbal, she is still cognitively on target. She is able to “speak” through an augmentive communication device which is attached to her wheelchair. The apparatus, available through Talk to Me Technology, works two ways: first, there is a camera attached to the screen. It zones in on the pupil of her eye, which she can then use to point to letters on a keyboard. Second, she has a Blue Tooth attachment on her wheelchair joystick.

“What is so cool about this is it sends a light to the pupil of my eye. Without this, I wouldn’t have the opportunity to speak in class or communicate with my friends,” said Lydia.

While this method of communication is relatively time-consuming, she has some preprogrammed phrases that help her on a daily basis. When preparing a lengthy speech like the one she gave at MAMES, she develops the text ahead of time, and is then able to play her speech, which sounds like a computerized female voice.

“She has a business card that says ‘A teenager with a voice! Trying to close the gap,’” said her mother, Jacque.

In the speech she typically gives, Lydia explains how she was born with her umbilical chord wrapped twice around her neck.

“I wasn’t breathing and was brought back to life. So now you can tell people you met a dead person,” quips Lydia.

She explains that cerebral palsy is a non-progressive, non-curable disease that she will have all her life. It results in a group of chronic conditions which inhibit her body movements and muscle coordination.

She credits her amazing drive and motivation to the support of her parents, Nathan and Jacque Dawley, of Bluffton.

“When I was 18 months old, a doctor tried to tell my parents they needed to accept that I was disabled. My dad picked me up and walked out of the room. Lucky for me, my parents have always listened to their gut feeling. They’ve always given me a chance,” she said.

“If my parents had listened to that doctor that day, I wouldn’t be here today to talk to you. People believing in me gives me the feeling there’s nothing I can’t do,” she said.

Early support:

Dawley said because she is non-verbal, she had to learn to read at a very young age to be able to communicate.

“My preschool teacher, Beth Crawford, told my parents, “There is something in this girl’s head,” said Lydia.

“I learned early on to communicate in nontraditional ways, to make friends, to get along in life. Interestingly enough, I witnessed some amazing changes in other students. They realized that if a person who can’t walk can do the things I was doing, everyone is capable if you believe in them.”

No limits:

Dawley is active in 4-H and shows goats, sheep, horses and her dog at the fair. She also gave her prepared advocacy speech through a communication competition in 4-H.

At school, she recently participated in speech competition. Her instructor, Amanda Huinker, helped pave the way for her to utilize her assistive technology device to excel at district competition, after which she moved on to state, receiving No. 1 ratings from all the judges.

Huinker said she really enjoyed working with Lydia on her speech.

“The process of working with Lydia was such a positive one; I too grew from the experience. She is an amazingly sweet girl who wants to make her mark on the world just like everyone else, and she most definitely does have the power to make a difference through her words; the fact that her words come through the voice of a computer doesn’t change the powerful message behind them – perhaps it even strengthens it,” said Huinker.

In her spare time, Lydia works with families of children with disabilities at Team Rehab in Decorah. In 2001, the Dawleys traveled to Poland with therapist Lisa Krieg to learn about Therasuit therapy, which is now available to patients in Decorah.

“Lydia talks to a lot of the patients who go there as an inspiration for the patient and their parents, of how not to let obstacles get in your way. They see what an inspiration Lydia is. How life doesn’t have to stop because they have a disability,” said Jacque, who added she is willing to help families get in touch with the companies who offer the assistive technology her daughter uses.

So proud:

Jacque said she and Nathan are so proud of Lydia and how she has become such a strong advocate.

She credits much of Lydia’s success to the Decorah School System.

“They were wonderful, helping us figure out how Lydia’s school days can go, how to help her do the work. They know she’s capable. Like Beth Crawford said: she gets it and you need to not let her stop,” she said.

“I feel very fortunate to live in this District and to have this school system behind us. Many other students we meet from other districts and other states don’t always have that support. Decorah is advanced in their thinking and in their technology and in their willingness to put the students’ needs first,” said Jacque.

What’s next?

Lydia has been asked to attend several upcoming technology lobbying events.

She said after graduation, she hopes to go to college at the University of Northern Iowa or in Washington, DC in order to work in speech pathology or get into government.

“With a supportive family, therapy and assistive technology, people with cerebral palsy can lead productive lives … If given the right tools, they can offer so much to society. I hope you will take time in your life to realize that everyone is capable. Everyone has a voice,” she said.

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