A Glimpse At Life With Tourette Syndrome
Sentinel
March 15, 2012

Youth speaks to students at a High School Advanced Child Development class

SOUTH BRUNSWICK, New Jersey— A 12-year-old Plainsboro, N.J. girl educated more than 50 South Brunswick, New Jersey High School students about life with Tourette syndrome (TS) at an in-service presentation on March 5.

Tess Kowalski spoke on behalf of the New Jersey Center for Tourette Syndrome and Associated Disorders (NJCTS) and described her experiences with the neurological disorder. She was diagnosed at age 5 and is one of many thousands of children affected nationwide.

Kowalski spoke to Meryl Orlando’s Advanced Child Development class about the tics and stigma associated with the disorder. Orlando invited Kowalski after hearing her speak to nearly 100 people at Congregation Kehilat Shalom in Belle Mead in late January.

During Kowalski’s 20-minute presentation, she talked about her history with TS, described her vocal and motor tics, detailed what it is like to live with the disorder, and explained how she and her family collaborate with NJCTS to advocate for TS.

Ally Mischke, Emily Rothstein and Emily Winter collaborated to write a children’s book “Ticking Timmy” about Tourette syndrome. “If I think about them a lot, I’ll tic a lot. If I sit around the house all day, I’ll tic a lot. If I’m stressed, I’ll tic a lot,” said Tess, explaining to the students that someone cannot be diagnosed with Tourette syndrome unless they have both motor and vocal tics. “If I’m feeling really good, I won’t tic that much. Sometimes it’s really hard, but I consider having TS both a burden and a blessing.”

Kowalski said the blessing comes in the form of educating others about Tourette syndrome.

During her presentation, the students were required to write the words to the nursery rhyme “Mary Had a Little Lamb” — but with a catch. Each time Tess clapped her hands once, they had to touch their nose before continuing towrite, to simulate ticking. When she clapped twice, they had to erase the last word they had written. Only three of the 50-plus students completed the exercise.

“I’ve never done an activity like that. I got lost, and it had a big influence on me,” Emily Rothstein, a senior, said. “Most teenagers think that [people with TS] are weird, that they should stop ticking. It’s not a syndrome that is educated a lot in high school.”

Kowalski expressed excitement when she found out that Rothstein and two other members of the Advanced Child Development class, Emily Winter and Ally Mischke, chose TS as their course of study for this semester, during which they put together an illustrated children’s book titled “Ticking Timmy.”

“I didn’t really realize how much it affects people,” Winter said. “When I was writing, it was eye-opening. I researched Tourette syndrome for the project, but this presentation and exercise really helped me learn more.”

Kowalski’s presentation also featured a video detailing the struggles of other preteens and teens with TS; a PowerPoint demonstration of her family’s NJCTS-sponsored trip to England to meet Tim Howard, a world-class soccer player who has TS; and a look at Teens4TS, a NJCTS-affiliated blog written by teenagers with TS.

“I was extremely impressed,” said Orlando, who also teaches Kowalski at the Kehilat Shalom Religious School. “I think it was very courageous of her to come to speak to a group of strangers. I think they learned understanding and empathy. Our students were given an assignment to learn about a special need, so Tess’ presentation fit in with their choice of investigating Tourette’s. The book the girls came up with was fabulous, clever and right on target.”