12-year-old Tess Kowalski of Plainsboro talked to the students about tics, stigma, what it means to be an advocate and the support provided by the New Jersey Center for Tourette Syndrome
MONMOUTH JUNCTION, N.J. – When Meryl Orlando, a teacher at South Brunswick High School, and Shari Rothstein, the principal at the Kehilat Shalom Religious School in Belle Mead, heard Tess Kowalski talk to her congregation about Tourette Syndrome, they knew her message also needed to be heard by teenagers.
Since Rothstein’s daughter, Emily, is a student in Orlando’s Advanced Child Development class at South Brunswick, it provided a natural opportunity for Tess, 12, to speak about TS on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS).
During Tess’ 20-minute “My Life With Tourette Syndrome” presentation, she talked about her history with TS, described her vocal and motor tics, detailed what it’s like to live with Tourette and explained how she and her family collaborate with NJCTS to advocate for TS. She also fielded many questions, many of which centered on her tics.Tess, who in late January spoke in front of nearly 100 people at Congregation Kehilat Shalom, bravely and calmly told more than 50 South Brunswick students on March 5 all about the neurological disorder with which she has been diagnosed since age 5 and that affects as many as 1 in 100 kids.
“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. If I’m playing outside all day, I won’t tic much. Sometimes it’s really hard, but I consider having TS both a burden and a blessing.”
For Tess, educating others about Tourette Syndrome is what makes having the disorder a blessing. One of the primary ways Tess taught the South Brunswick students about TS is through a writing exercise. 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 writing to simulate ticking. When she clapped twice, they had to erase the last word they had written. Of the 50-plus students, only three completed the exercise.
“I’ve never done an activity like that. I got lost and it had a big influence on me,” said Emily Rothstein, a senior. “Most teenagers think that they (kids with TS) are weird, that they should stop ticking. It’s not a syndrome that is educated a lot in high school. I only made it to the second stanza of ‘Mary Had A Little Lamb.’ I am definitely more educated now.”
Tess was thrilled to find out Rothstein and Rothstein’s classmates, 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 of Tourette Syndrome. “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.”
Tess’ presentation also featured a video detailing the struggles of other preteens and teens with TS; a power-point 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 Tess 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.”
More information about TS and NJCTS’ educational programs is available by calling
908-575-7350 or by visiting www.njcts.org.
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New Jersey Center for Tourette Syndrome and Associated Disorders, Inc.
Collaborative partnerships for the TS community.