Plainsboro fourth-graders get lesson about Tourette Syndrome from NJCTS peer youth advocate

Thirteen-year-old Tess Kowalski educates the students and teachers at Millstone River School about the neurological disorder on behalf of her 9-year-old sister Paige

PLAINSBORO – Tess Kowalski is a pro at delivering in-service presentations on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) to schools and houses of worship in Central New Jersey. Now, the 13-year-old TS advocate is helping her 9-year old sister Paige get into the act.

On December 21, Tess delivered an in-service presentation on Paige’s behalf to the fourth-grade glass at Millstone River School in Plainsboro. Paige wanted to be proactive about becoming an advocate and teaching others about TS – a misunderstood, misdiagnosed, inherited neurological disorder that affects 1 in 100 children and is characterized by vocal sounds or motor movements called tics. So she enlisted her sister to discuss TS, its effects, its impacts on daily life at home and in school, and why her future classmates and teachers need to know more about the disorder.

“Many kids think that kids with TS are doing their tics on purpose and then yell at them to stop. But we can’t!” Tess said. “Bullying someone with TS is like bullying someone who takes insulin for their diabetes or someone who avoids certain foods because of an allergy, which no one does. So why should people bully kids with TS?”

A hallmark of Tess’ past presentations has been to show the introduction of the “I Have Tourette’s but Tourette’s Doesn’t Have Me” video and have the class undertake a writing exercise in which each students had to pen a short rhyme in 90 seconds while dealing with tics assigned to them. Tess and Paige had the Millstone class of 18 students execute those tasks as well, with many of the kids noting they had learned a lot during a question-and-answer session. Collaborative Partnerships for the Tourette Syndrome Community Photo courtesy of the Kowalski family Tess Kowalski, 13, right, gives a TS in-service presentation at Millstone River School on behalf of her sister, Paige, 9.

Also attending the presentation were the two fourth-grade teachers, school nurse, guidance counselor, lunchroom aide, school psychologist and the head of the Child Study Team. NJCTS offers these student-led in-service presentations about TS and associated disorders such as OCD, ADHD, anxiety and depression to foster understanding, sensitivity and tolerance by describing the symptoms, causes and effects of the disorders.

These presentations also work to displace the myths and stereotypes that are often attributed to TS and contain a strong anti-bullying message. Student presenters may or may not have TS or one of the co-morbid disorders themselves, though all have first-hand experience with one or most of them. Student-led in-service presentations are appropriate for all age groups and might be used in the school setting, for sports leagues, scout troops, camps or after-school programs – many of which have been the beneficiary of Tess’ advocacy over the past year.

Read more about what Tess has accomplished by visiting the NJCTS Newsroom. And if you’re a parent of a teen or preteen with TS who wants to get involved in the Peer Advocate Program, please call 908-575-7350 or e-mail Education Outreach Coordinator Melissa Fowler at mfowler@njcts.org. More information also is available on the TSParentsOnline blog.