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On Stage with Tourette Syndrom

September 30, 2012

Teacher Michelle Hall and her son Caleb are starting a chapter for people dealing with Tourette Syndrome. Photo by Ed Barber

IRASBURG - Tourette Syndrome is a neurological disorder in the brain that sends signals to the body without someone's knowledge. It's similar to a wiring system gone wrong. The side effects include such things as having vocal or head ticks, clearing your throat involuntarily, and other involuntary motions.
Michelle Hall is a teacher at the elementary school where her son Caleb is enrolled. Caleb was diagnosed with Tourette Syndrome when he was in the first grade. Hall said the doctor's initial diagnosis was ADHD, but having worked with children with Tourette through a Head Start program in St Johnsbury, she was certain he was wrong.
In the second grade, Caleb, with the support of his teachers and administration, shared the issue with other students. A movie titled “I have Tourette but it doesn't have me” was shown to his classmates so they could understand what Caleb has to live through. But last year, when Caleb was in sixth grade, he began experiencing problems with classmates who began to mimic him and tell him he is retarded.
“The school board, teachers and administrators were very cooperative,” Hall said. “It got to the point where his friends were told, 'If you play with Caleb, we won't be your friend.' Kids started to pull away from him.” As a result, the sixth through eighth grade classes were shown the movie so they could understand that Tourette Syndrome and a person's intelligence level are not related.
“In two years, Caleb will be going to Lake Region Union High School. He is scared about the transition. This summer he was at a baseball game at the high school. He was making a noise that sounded like a duck. So the spectators, adults, were saying, “Kill the duck,” said Hall. “I wasn't there, but Caleb was very upset.”
“You don't treat people like that. Trust me, it is distracting, I understand. But does it make him a bad person? The community needs to see that Caleb can walk and talk like us,” states Hall.

“People need to realize it's out there. It's hereditary. Don't put it in the closet. Tourette is a piece of you, but it's not who you are.”
While researching Tourette, Hall realized that the State of Vermont doesn't have a chapter that people can tap into for education, outreach and support. “We would like to raise money so we can start a Vermont chapter. The goal is to form support groups throughout the state, go to schools and talk to students,” said Hall. “We want to host workshops and train teachers about Tourette. We also want to have a Vermont family network for people to connect to.”
To that end, Hall sent letters to “famous” people who have Tourette Syndrome and received an enthusiastic response from American Idol contestant David Pittman. Pittman, who also has Tourette, was able to finish in the top 70 Idol contestants this past year.
Hall is planning a Vermont Walks 4 Tourette Awareness 2012 day to educate community members about the syndrome. The event will take place on October 21 and will be held at Lake Region Union High School. The Walk-A-Thon will take place from 10 AM to 2 PM followed by a spaghetti dinner and concert. Pittman will perform at the concert.
To get information about the event, register or purchase tickets for the show and/or dinner, please visit: http://www.tsa-usa.org/teamtsa/index.html or call Hall at 802-323-2722.
“Starting a statewide chapter is important for someone like me so they won't be isolated and alone,” said Hall. “It's very hard to see people pick on a child for something they can't control."
The event will be held in honor of Cody Cole who also had Tourette. Cole, from Irasburg, was accidentally killed in a tragic incident this past summer.

 

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