Educating others about Tourette's
Friday, July 10, 2009
Ariel Small races in the door. He just spent his after-school hours lifting weights and running up hills. "Gotta shower," calls the energetic teen as he races up the stairs. In spite of a grueling school and athletic schedule, the Highland Park 15-year-old can't wait to be interviewed-he's down in minutes and ready to talk. He has a lot to tell people and no time to waste.
By anyone's standards, Ariel Small's accomplishments would be substantial for a teen-captain of the freshman football team, freshman wrestling conference champion and freshman wrestling MVP. But add the obstacles he has faced from Tourette Syndrome and Obsessive-Compulsive Disorder and his accomplishments rate even more remarkable. And that's what Ariel needs to talk about.
Feeling successful in spite of his illnesses hasn't come easily for Ariel or for his parents, Robin and David. The middle child of five boys, Ariel was diagnosed with Tourette Syndrome when he was 6.
"You have a feeling of hopelessness, and I didn't know anyone who had this," Robin says.
School was tough for Ariel, especially once he reached middle school. One teacher pulled him out of the classroom and told Ariel to do all his ticking now, so he wouldn't disrupt her during class. Even though he had a diagnosis and a special education plan, that didn't stop one school principal from telling the family he didn't buy into Tourette's. He thought it was just an excuse for bad behavior.
The irony is that while adults in his life were unaccepting of his illnesses, many of Ariel's classmates were able to look past the diagnosis. In eighth grade, Ariel was elected class president. And getting involved with the Tourette Syndrome Association changed the way he looked at his illness.
This year, Ariel filled out an application to be a TSA youth ambassador. After being selected, David and Ariel headed to Washington, D.C., for three days of training. He met other kids with Tourette Syndrome and realized they were "all a bunch of really good kids," he remembers. He also realized a lot of these kids put up with the same problems he had, of people not understanding Tourette's. He decided he wanted to help all the kids who had to not only overcome a disability, but also the judgments of people who didn't understand.
"Ariel wanted to turn the challenges of eighth grade into something positive," says his dad, David. As a youth ambassador, Ariel has been speaking in front of groups and schools about living with Tourette Syndrome.
"After eighth grade, there was a point where I dreamed I could come back and help other kids with Tourette's," Ariel says. "When I was on the airplane coming back (from Washington, D.C.), I knew I had accomplished a dream. It showed me it was a step toward my ultimate goal of teaching awareness."
Advice from Ariel's family
David Small:"You have to be an advocate for your child. You need to reach out to all the teachers, social workers, principals. You need to educate them and not assume they know or have effective ways of dealing with it."
Robin Small: "The number one thing is to be supportive of your child. If they're not getting support (outside the home), then they really need family."
Aeron Small, 20: "You have to teach siblings how to deal with it. It takes a little bit of time. ... It will just feel unfair for a while."