When Amanda Silvers first contacted Spotswood Public Schools to gauge their interest in having the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) in-service presentation on TS come to their district, Director of Special Services/Programs Daniel Silvia was thrilled and offered to have Silvers come talk to three psychology classes at Spotswood High School.
Imagine how thrilled Silvers was when, following her third presentation on March 28, a thoroughly impressed Silvia sought out three more classes to which Silvers could present that day. All told, Silvers spread awareness about Tourette – a misunderstood, misdiagnosed, inherited neurological disorder that affects 1 in 100 children and adults – to six classes and 138 people total.
Silvers, an East Brunswick High School senior and an NJCTS Youth Advocate who has been giving presentations on behalf of the organization for more than 2 years, spent the majority of her time answering the questions of students on the heels of a query of her own:
“How many of you have ever heard of Tourette Syndrome or know anyone with it?”
Just 3 out of 75 students and teachers in the first three audiences – advanced placement and regular psychology classes taught by Colleen Meyers – answered “yes.” After Silvers gave them a primer about Tourette – the definition of vocal and motor tics, when children are often diagnosed, who is affected by TS, etc. – she fielded an array of questions. Following are some of those queries, in question-and-answer format:
Silvers Answer: “In preschool and kindergarten, teachers noticed and recommended that I get checked out because of I was hopping, blinking and not paying attention. But I wasn’t officially diagnosed until age 5.”
Question: “Are there any medications for TS?”
Answer: “There are none specifically, but there are anti-anxiety, anti-psychotic and blood pressure meds. Which you can take depends on your body chemistry, and everyone and everything is different. I take blood pressure meds, which can control the tics, but it doesn’t make them go away completely.”
Question: “Does your Tourette ever go away?”
Answer: “Never, but tics wax and wane. Some days are worse than others, especially when I get stressed out and moody ‘off the walls.’ You can grow out of tics and get new ones. I hopped when I was little. Now, I bang my head on the wall or pick my skin or pull my hair sometimes.”
Question: “Do you have a lot of friends who support you no matter what?”
Answer: “I have a very strong group of friends who are very supportive. If someone is not going to be supportive, they are not being supportive of me and shouldn’t be my friend. If people don’t like my tics, then they shouldn’t bother being near me. My friends see me and not my disorder.”
Question: “How have your teachers been about it?”
Answer: “Most have been very understanding, but I’ve had a few that have been not so good. One teacher last year kicked me out of the classroom, and she was supposed to be one of the most understanding teachers because she was a special needs teacher. She said that students were being disturbed by me and kicked me out into the hallway. My family and I, to this day, have not received an apology from the teacher.”
Question: “Does it affect relationships?”
Answer: “I don’t have time for boys.”
Question: “Can you swim?”
Answer: “Yeah, I can swim. I can do anything that you guys can do.”
Question: “Do you curse because of your Tourette?”
Answer: “No, I don’t have that tic. That’s called coprolalia, and only 10 percent of people with Tourette actually have that. That’s what society seems to think of TS. The only way to stomp out the ignorance is to educate further and make sure that people know about the disorder.”
Question: “Does anyone ever ask you what’s wrong with you?”
Answer: “I’m always open to explaining it to people. If I see someone staring at me, I’ll tell them that I have Tourette and what it is. It’s important to show that you’re not afraid.”
Meyers was extremely impressed with Silvers’ presentations and hopes to see Silvers come back to the Spotswood School District to discuss Tourette Syndrome with younger students, especially those around the same age group as when most children with TS are diagnosed – 6 to 9 years old.
“It was amazing the way Amanda could open up and tell her story, provide a wealth of information about the disorder and create an atmosphere where students felt free to ask a variety of questions,” said Meyers, who presented Silvers with plenty of queries herself. “It’s difficult for an 18-year-old to relate a story in front of other 18-year-old. I was impressed with the amount of questions that the students – not just about the disorder, but about her positive and negative social interactions. She made them feel comfortable, and I think she could do that for a variety of age groups.”
Silvers is just one of many teenagers around New Jersey giving these in-service presentations on behalf of NJCTS. The presentations are designed to foster understanding, sensitivity and tolerance of Tourette Syndrome and its symptoms by describing the symptoms, causes and effects of the disorder. They 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 an associated disorder such as OCD, ADHD, anxiety or depression 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 can be used in the school setting, for sports leagues, scout troops, camps or after-school programs. More information about this program is available by calling 908-575-7350 or by visiting www.njcts.org.