http://paloaltoonline.com/print/story/print/2011/05/20/going-to-school-with-a-difference


Palo Alto Weekly

News - May 20, 2011

Going to school, with a difference

Palo Alto teens with Tourette Syndrome learn to tell their stories

by Chris Kenrick

It's not easy for a teenager to be different, let alone stand up in front of a class at school to talk about it.

But two Palo Alto eighth-graders who live with the disruptive, involuntary motor and vocal tics caused by Tourette Syndrome have learned to do just that.

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.

Staff Writer Chris Kenrick can be emailed at ckenrick@paweekly.com.

Comments

Posted by terryg, a resident of Evergreen Park
on May 21, 2011 at 4:49 pm

I am soooo impressed by both these young men. Good for them for helping others in their shoes by standing up and speaking up.


Posted by Lynette, a resident of Evergreen Park
on May 21, 2011 at 7:01 pm

Way to go Peter and Mark! You are truly ambassadors. Thank you for educating us about Tourette Syndrome.


Posted by Michele Dauber, a resident of Barron Park
on May 21, 2011 at 8:13 pm

I admire you for your courage. Thank you for helping to destigmatize brain and neurological problems so that others can learn about them. I wish I'd been half as mature and brave when I was in middle school.


Posted by Karin Bloom, a resident of Jordan Middle School
on May 21, 2011 at 8:30 pm

Thank you Peter and Mark. Applause and admiration.


Posted by George, a resident of Evergreen Park
on May 22, 2011 at 4:03 pm

This is courage and leadership, in action! Excellent work, young men! I can't begin to convey how proud it makes me to have one of these fine gentlemen in my neighborhood, helping to led the way toward enlightening their fellow humans, and bringing more understanding to our world. Applause!


Posted by Joy, a resident of Crescent Park
on May 23, 2011 at 9:31 am

A wonderful story.


Posted by sarah, a resident of Charleston Gardens
on May 23, 2011 at 10:17 am

Bravo to both boys. You are truly remarkable leaders. I wish everyone would support and honor you and your achievements.


Posted by Miriam Palm, a resident of Old Palo Alto
on May 23, 2011 at 10:53 am

Hallmark made an excellent film about Tourette, based on a real story, that acquainted me with this condition. I recommend it to all. The performances are excellent, especially Jimmy Wolk, who plays the teacher.

FRONT OF THE CLASS - LXVI of a series
The triumphant story of Brad Cohen, a man who overcomes incredible obstacles to become a gifted teacher, is inspired by a true story. When he was growing up, Brad (Jimmy Wolk) started making funny noises – all the time. Only Brad – and his supportive mother (Patricia Heaton) – knew he couldn't control it. He was teased, misunderstood and punished for disrupting class. By the time he is diagnosed with Tourette Syndrome, Brad had learned to hate school. When an understanding school principal offers encouragement, amazingly Brad decides to become a teacher – the teacher he never had. But who in their right mind would put someone with Tourette's in front of the class? After 24 schools turned him down, Brad refused to give up. Discover what happens when one school finally gives him a chance. Brad Cohen's resilience and determination changed his life. His story may change yours.
Stars: Jimmy Wolk, Treat Williams and Patricia Heaton
Running Time: Approx. 110


Posted by PA Mom, a resident of Greenmeadow
on May 23, 2011 at 12:44 pm

Great story. More like it, please.

Well done Peter & Mark!


Posted by Linda Baker, a resident of JLS Middle School
on May 23, 2011 at 7:34 pm

Well done! We're proud of you!


Posted by Daryce Peterson, a resident of another community
on May 28, 2011 at 1:13 pm

I am a resident of Redwood City and an active member of a Palo Alto church. I do not know Mark and I do not know Peter well. However, I am writing this to tell both of you how much I admire your courage! You are, indeed, remarkable leaders and you speak for so many people who are unable or too embarrassed to speak for themselves.

For anyone interested in knowing more, I remember a movie "The Tic Code" made in 1997 (that is now on Netflix)about Tourette Syndrome with Chris Marquette, Gregory Hines and Polly Draper. It touched my heart and helped me to understand the plight of a young friend.