Since being diagnosed with Tourette in elementary school, Peter Lenicheck and Mark Smeets each have tried many times, with varying degrees of success, to explain their unusual behavior to classmates.
Recently, their parents took them to Washington, D.C., to be trained by the national Tourette Syndrome Association as official "ambassadors" for explaining the neurological condition.
Mark and Peter are scrapping their homemade presentations for official handouts from the association, but their task of explaining hasn't really changed.
"It's not one of the disabilities everyone knows about," said Mark, a student at Jordan Middle School.
"People who do know about it usually think it's just swearing (inappropriate outbursts of obscenity occur among 15 percent of people with Tourette), but we want to educate them that it's not just swearing but basically any movement or sound you can think of.
"I just want to help other kids who also have Tourette Syndrome not go through what I went through."
For Mark, Tourette began in elementary school with persistent coughing that his doctor first thought was a cold. The Smeets family lived in Florida at the time. Symptoms disappeared but later returned after the family moved to Palo Alto and Mark was in fifth grade at Walter Hays School.
"I think my first tic was throat clearing and squeezing my eyes shut and twitching my nose," he said.
"They're minor, but it still has a great effect on school because everyone's noticing. I try to suppress them, but if I do suppress them the next period it just gets worse.
"Recently, there was (state-mandated) STAR testing and it would be so quiet in the room, and then one of my tics would make everyone stress out."
Mark first met Peter when they were in a sixth-grade class at Jordan together, and he thought Peter was teasing him by mimicking his tics.
"We'd look at each other and we had similar tics. We'd just stare at each other and say, 'You're copying me, or something,'" Mark said.
"Then we got together with a counselor, and she told us we both have Tourette's."
The two of them made a presentation to their class about it.
Peter was diagnosed with Tourette Syndrome in second-grade, after behavior difficulties in first-grade led to a diagnosis of attention-deficit hyperactivity disorder, he said.
"I have tics, motor and vocal," Peter said.
"Kids would say, 'Why are you doing that? Could you please stop?' And I'd say, 'I have Tourette Syndrome,' and I'd explain to them what it is."
Peter now attends the Esther B. Clark School at the Children's Health Council where, he said, classmates have given him less trouble about his tics.
"I made a Power Point presentation and got in front of the class and talked about it," he said.
"One of my main tics is pointing the middle finger. Now people see me doing that and they say, 'Oh, that's just Tourette's.'"
After their recent training in Washington, D.C., Peter and Mark visited Capitol Hill to speak with members of Congress or their staff members about Tourette Syndrome.
Peter spoke with U.S. Rep. Zoe Lofgren, D-San Jose, who was a Gunn High School classmate of his mother, Lucinda Breed Lenicheck, in the 1960s.
"She listened to me very intently, and I was glad I could talk to someone about it who understood," he said. "She said she was on a couple of committees, and she would ask them to sign on to this 'Dear Colleague' letter to keep the funding for Tourette's."
The frequent and repetitive motor and vocal tics of Tourette Syndrome are involuntary, according to the National Tourette Syndrome Association. Before a diagnosis is confirmed, both involuntary movements and vocalizations must be present for more than a year.
Symptoms vary from very mild to severe, with most cases falling into the mild category, and boys are affected three to four times more often than girls, according to the association.
Tourette sufferers have the same IQ range as the general population, but problems dealing with tics sometimes call for special education, the association said. Many go on to reach high levels of professional achievement.
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