STONINGTON — Due to its relative rarity, and its portrayal on television (one South Park episode in particular), most people are misinformed about Tourette Syndrome, says Collin Krzyzaniak.
“It’s sort of something that’s misunderstood,” said the Stonington High School junior. “They think it’s just uncontrollable swearing.”
But he hopes to change that misconception.
Collin, 17, and his mother, Julie Krzyzaniak, are attending the 7th annual Tourette Syndrome Youth Ambassador Training Program in Washington, D.C. There, over the course of three days this week, Collin is learning how to speak with other teens, younger children, and adults about the reality of Tourette Syndrome, a genetic condition.
Tourette Syndrome causes tics, or uncontrollable sounds or movements. Tourette patients don’t know when the tics will occur, or how long they will last. The tics can make routine, everyday activities difficult, Collin explained during an interview before his trip to Washington. Sometimes, he noted, a short school assignment can take much longer than it should because he has to shift his focus from his work to his tic. He recalled one time in band class when he was unable to read the music because he couldn’t stop blinking.
As a very young child, Julie recalled, Collin had what appeared to be little habits, like she did when she was young.
“We just thought mine was little habits that I had to break out of,” he said. But eventually, a neurologist diagnosed him with Tourette Syndrome.
“Some people think it’s a psychological or intellectual disease,” Julie said. “But it’s neither one. It’s neurological.”
It’s not contagious, and it doesn’t lower your intelligence, explained Collin, an honor-roll student.
But in addition to its unpredictable interference with tasks, Tourette Syndrome can make it difficult for a teen to make friends, Collin added. He expressed gratitude that he’s had the same core group of friends since he was a child, and he hopes his ambassador training will allow him to help teens who aren’t so lucky.
Collin’s presentation skills will also be needed while he’s there, for a legislative luncheon where participants will tell their personal stories to their legislators or aides. In particular, they will discuss how three legislative initiatives supported by the national Tourette Syndrome Association could help them. Collin will also be presenting a public-policy award being given to Sen. Tom Harkin of Iowa, his mother’s home state.
When he returns from Washington, he’ll be expected to speak out and support awareness of Tourette Syndrome. His plan is to “come back here and try to change the image of Tourette’s in my community,” he said, and “bring light to the idea of what Tourette’s really is.”
Julie will be assisting him.
“We’ll try to do a lot of education at the high school,” she said.
Although the training will be new, Collin’s desire to help others isn’t, Julie said. “Collin’s always been one that liked to help people,” she noted.
He’s been a peer mentor for disabled students since he was in kindergarten, and has also served as a mentor for multiple Special Olympics.
His own health issues have taught him what it means to be a healer, and he plans to enter the field of pediatric neurology. A doctor could have all the knowledge in the world, he explained, but without people skills and an ability to listen, “you’re not going to be an effective doctor.”
“You need a doctor who genuinely cares and is a people person,” he said.
Collin also plays soccer at Stonington High School, and is a member of student government. He has volunteered at Westerly Hospital, and is planning to go on a summer community service trip to Costa Rica.
But speaking before his trip to the nation’s capital, he was a little bit nervous and focused on what he’d learn at the training. “I’m sure we’re going to learn a lot,” said Julie.
Youth Ambassador training has been an annual program of the Tourette Syndrom Association since 2008. The program is sponsored by the American Legion Child Welfare Foundation, Teva Pharmaceuticals, and the Frank J. Antun Foundation. Julie’s expenses are partially funded by the Connecticut Council on Developmental Disabilities.