As the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) 2012 Youth Advocate of the Year, I have tried to promote and spread the organization’s education outreach and peer advocacy programs as a National Youth Ambassador.
The majority of my efforts have been centered on talking about Tourette Syndrome to elementary school and middle school students in North Jersey. A lot of schools have been asking me to come educate students and faculty about TS — a misunderstood, misdiagnosed, inherited neurological disorder that affects 1 in 100 children.
One of those schools was Memorial Middle School, which on February 22 invited me to be part of a schoolwide advocacy day. I 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. 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.
People with TS are born with the disorder and did not do anything wrong to get it, just like a person with diabetes or a peanut allergy.
A key part of my presentation is a hands-on exercise in which I ask 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 the ability to not control something is what people with TS — like me — 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. In the same way, for someone with Tourette, it takes a lot of energy to stop ticcing. As a teenager, I’ve been able to better control my tics through a technique known as suppression – holding them in until a more “convenient time” arrives to release them – but when I was younger, I often would blink my eyes repeatedly (a simple motor tic), clear my 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, my tics got 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, I 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.”
We really need more people to spread the word about this neurological disorder that affects 1 in 100 people. If you are interested in helping out, please reach out to either NJCTS or myself.