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home : features : people of faith

6/6/2013 9:01:00 AM
Teen with Tourette's is youth ambassador
JACOB BAIRD. To schedule him for a speaking engagement, contact Sue Conners of the Tourette Syndrome Association of Greater New York State at conners@roadrunner.com or (716) 839-4430. Search Facebook for Jacob Baird TS Youth Ambassador. For information on Tourette's, see http://tsa-usa.org.
JACOB BAIRD. To schedule him for a speaking engagement, contact Sue Conners of the Tourette Syndrome Association of Greater New York State at conners@roadrunner.com or (716) 839-4430. Search Facebook for Jacob Baird TS Youth Ambassador. For information on Tourette's, see http://tsa-usa.org.

For someone who started out refusing to tell anyone he had Tourette syndrome, 16-year-old Jacob Baird sure has changed his tune.

He's spoken at support group meetings, been a panelist at an educators' conference and appealed to senators and congressmen in Washington for research funding. On the same trip to the nation's capitol in the spring, he trained as a "youth ambassador" for the Tourette Syndrome Association. He'll give presentations at area schools next year.

"It was weird," he said of meeting privately with Rep. Bill Owens. "It was definitely humbling."

Jacob is a sophomore at Lake George High School and a parishioner at Sacred Heart Church in Lake George. His symptoms of Tourette syndrome, a neurological disorder that causes people to make quick, repetitive motions or sounds they cannot control, emerged in seventh grade, but it took another year and a trip to a doctor in Long Island for a diagnosis.

In school, he tried to hide his tics, which range from making animal noises to shaking his neck to drumming his fingers on his desk. One past tic caused him to slap himself in the shoulder to the point of bruising.

"I didn't want my friends to know," Jacob recalled. "I didn't want them to think differently of me."

Since early childhood, he had also been dealing with obsessive-compulsive disorder, which was so extreme at one point that his strict morning routine took up an extra 45 minutes before he could leave the house. He still craves order; if he can't have it, "it's really stressful," he said. "I get really nervous [and] I think something bad will happen."

After he started receiving cognitive behavioral therapy for his conditions, Jacob began confiding in his friends and, later, his classmates.

"They really didn't care that I had that different aspect about me," he said. "It's just something I did."

His mother, Wendy, said her son has made "such a change. What he's been able to overcome and how hard he's had to work at it - it really is an inspiration."

At first, Jacob's parents chalked his tics up to bad behavior. Mrs. Baird still feels guilty about having punished him.

But "I don't blame her, because neither of us knew," Jacob responded. "I just thought I was constantly forgetting that I wasn't supposed to do it."

Since opening up, Jacob has been dedicated to raising awareness and debunking misconceptions about Tourette syndrome.

The most frequent question he gets from his peers is, "Can you swear and get away with it?" Jacob explains that only 10 percent of sufferers have the tic that causes involuntary obscene language.

"Hollywood would exploit that, because that's something you can make a cheap joke out of," he said.

There is also a stereotype that people with Tourette syndrome aren't "trying hard enough" to control their behavior, Jacob said, but others "don't know what it feels like. They have a hard time putting themselves in [our] shoes."

He compares suppressing tics to "trying not to sneeze or cough. You can stop it for a little while," but not forever.

He does attempt to prevent tics by chewing gum, sucking on a mint or exercising. In class, he leaves the room to get a drink or take a walk. He said he's excited to start speaking at schools to "spread more knowledge" about Tourette syndrome, so "it can just be an everyday term."

Jacob is an honor student who plays soccer, wrestling, tennis and chess; referees summer soccer leagues; and participates in weekly Warren County Youth Court sessions, where he serves as prosecution, defense, judge and jury in trials involving minors accused of non-violent crime. He plans on studying criminal or environmental law to become a lawyer and eventually a judge.

This summer, Jacob will learn to drive and work as a dishwasher and busboy at a Lake George restaurant and a lifeguard at a water park.

He said his faith has helped him through difficult times.

"In the beginning I thought, like, 'Why me?'" said the teen, who added that some soccer teammates used to bully him, accusing him of faking his tics and telling him to shut up. "I would think, 'They don't understand.' But [God] understood."

A few kids still bully Jacob, but "it's their problem, not my problem," he said.

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