RIVER EDGE – River Dell High School junior Emily Fleischman has Tourette Syndrome, but she does not let the neurological disorder that affects as many as 1 in 100 people – or its side effects – define her life. Fleischman is a normal person, leading a fulfilling life. She just so happens to have TS.
That’s one of the messages she communicated to fifth- and sixth-graders from the Roosevelt School in River Edge during her latest peer-to-peer in-service effort on Dec. 15. It’s a message she also wants the general public to receive, making presentations such as this vitally important.
But perhaps an even more important message – one that Fleischman repeated over and over during her 30-minute power-point presentation – is that people with Tourette Syndrome never should be bullied.
“It’s OK to be yourself, and other people should never take that away,” Fleischman, 17, told the nearly 140 kids in attendance. “I held in my tics so I wouldn’t be bullied. It took me a long time to learn that it’s OK to be different, that people shouldn’t bully you, and that if someone bullies you, they’re not your friend.”
Fleischman talked a lot about tics – repeated involuntary movements and uncontrollable vocal (phonic) sounds. Her power-point slides, which she learned how to create as New Jersey’s 2010 National Youth Ambassador to the Tourette Syndrome Association, gave examples of tics and noted how hard it is for someone with TS to control them.
“It hurts (to hold in tics),” said Fleischman, who suffered from eye-blinking, the need to touch things, throat-clearing and the need to say “I love you mommy” when she was younger. “They can be physically painful. When you add someone bullying you, it can make life even worse.”
Fleischman believes the more children and adults alike learn about what bullying can actually do to someone, the more it will decrease in schools, homes and other places of social and learning activity. Education is key, and that is why she has been giving these presentations to schools, girl scout troops and other organizations for the past two years.
Having worked closely with the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) during that time, Fleischman is excited about its newly launched “Bullies Back Down When We Stand Up” poster contest.
The contest, which runs through March 1, is open to all New Jersey students in grades 7 through 12 and will help kick off the Dare To Dream Student Leadership Conference on May 21 at Rutgers University. Students interested in participating should visit http://www.njcts.org/postercontest for more information.
“Families need to get much more education and information,” said Fleischman, who strongly advocates visiting www.njcts.org, adding that she didn’t know that NJCTS “had all these programs and retreats until last year. I went to camp for the day last year and got to meet so many other people with Tourette’s. It was nice to interact with them and hear their stories.”
Another key to the education is process is having supportive parents, according to Fleischman, who repeatedly notes that hers have been everything she has needed and more – especially since her diagnosis of TS several years ago.
“It’s very important to have parents that say, ‘You need to understand that it’s OK and you didn’t do anything wrong,’ ” she said. “You need to have parents that don’t think or say that you’re weird. If I didn’t have that, I’d be really upset and be working so hard to control my tics that I wouldn’t be doing well in school.”
Fleischman is eyeing her collegiate career and favors Rutgers University, which partners with NJCTS on the National Institute of Mental Health Genetics Sharing Program and the TS Clinic.
“I am so proud of her,” her mom, Florence Fleischman, said. “She does 99 percent of the scheduling (for her presentations) on her own, the correspondence on her own and all the tweaking of her presentations on her own. She really has come very far. It’s because of the National Youth Ambassador program and what she has learned through the partnership with NJCTS. If she can help one child at each lecture, that’s what it’s all about.”
To learn more, visit www.njcts.org. The New Jersey Center for Tourette Syndrome & Associated Disorders also runs Teens4TS, a blog for teenagers with Tourette Syndrome by teenagers with Tourette Syndrome, at www.njcts.org/teens4ts.
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