NJ Center for Tourette Syndrome Peer Advocate Emily Fleischman was invited to be part of a daylong, schoolwide advocacy day at Memorial Middle School and reached nearly 200 people.
FAIR LAWN – As the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) 2012 Youth Advocate of the Year, Emily Fleischman has done a lot to promote and spread the organization’s education outreach and peer advocacy programs.
The majority of her efforts have been centered on talking about Tourette Syndrome to elementary school and middle school students in North Jersey. Fleischman, a 17-year-old senior at River Dell High School, is so proficient in giving her presentation that schools are calling her in droves – clamoring for her to come educate students and faculty about TS, a misunderstood, misdiagnosed, inherited neurological disorder that affects 1 in 100 children.
One of those schools is Memorial Middle School, which on February 22 invited Fleischman to be part of a school-wide advocacy day aimed at teaching students about bullying, self-respect, the important of learning and many other relevant topics. Fleischman jumped at the opportunity and, in three separate presentations, educated more than 180 teachers and students about Tourette, its associated disorders (such as OCD, ADHD and anxiety) and bullying.
“Education is important,” said Fleischman, who will be officially honored as the 2012 NJCTS Youth Advocate of the Year during a ceremony at the April 14 NJ Walks For TS at Ramapo College. “Without education, people will continue to get bullied, continue to stigmatize conditions like Tourette Syndrome and those who face both of those things will continue to feel like they are outcasts. That should never happen, and that’s why I give these presentations.” Collaborative Partnerships for the Tourette Syndrome Community Photo by NJCTS Emily Fleischman talks to students and teachers at Memorial Middle School in Fair Lawn about Tourette Syndrome and bullying as part of the New Jersey Center for Tourette Syndrome & Associated Disorders’ Peer Advocacy Program.
A key part of Fleischman’s 30-minute presentation is a hands-on exercise in which she asks everyone to imagine they have an itch on their head, but that they must put their hands on their laps and not scratch the itch even once. Why? Because, Fleischman said, the ability to not control something is what people with TS face every hour of every day in the form of “tics” – involuntary vocal sounds or motor movements.
“It takes a lot of energy to control not scratching your head,” Fleischman said. “In the same way, for someone with Tourette, it takes a lot of energy to stop ticking.”
As a teenager, Fleischman has been able to better control her tics through a technique known as suppression – holding them in until a more “convenient time” arrives to release them – but when she was younger, Fleischman often would blink her eyes repeatedly (a simple motor tic), clear her throat (simple vocal tic), utter “I love you mommy” over and over (complex vocal tic) or touch every tile on the kitchen table (complex motor tic).
Like most children and teenagers, Fleischman’s tics tend to get worse while under stress – such as having to take a test at school or being among a large group of people. Many of the students in attendance also listed sports, music and family life as situations in which stress can become a big deal. At the end of the presentations, Fleischman posed the question “What have you learned today?” to the students and received many impressive responses, including:
- “Tics are when you do stuff impulsively.”
- “Don’t make fun of people because they have TS.” “Tics really do affect your everyday life.”
- “TS is not contagious.”
- “Bullying is bad, especially when it involves someone who has something like TS.”
“It’s very hard as a parent to watch your child struggle or be afraid that they’re not going to be loved or accepted,” said Florence Fleischman, who as Emily’s mother attends every presentation her daughter gives. “Bullying is really, really wrong. These days, thankfully, it’s more addressed. People with TS are just the same as everybody else.”
More information about Fleischman’s presentations, including how other teenagers and families can participate in schools throughout New Jersey, is available by visiting www.njcts.org or the Teens4TS blog.