What do you think of when you hear the word “Tourettes”? A person barking, shouting, or swearing? This is what most people think (thanks to the media) when in actuality less than 15% of people with Tourette Syndrome (TS) have coprolalia which is defined as involuntary swearing or the involuntary utterance of obscene words or socially inappropriate and derogatory remarks. Sadly it is commonplace for adults to reference to TS in a joking or negative way. I even have a good friend who is insensitive enough to joke about having TS in my presence. I understand she’s joking but to my daughter, Madeline who has TS, it’s no joke.
Prior to Madeline’s diagnosis I met a neighbor boy who has TS. His tics were hard to ignore. He grunted, jerked his head, flailed his arms – you get the picture. I did my best to ignore his tics and it saddened me that that he was so self-conscious of his tics that he would hold his hands tightly under his armpits whenever he spoke to me. He was teased a lot so his parents transferred him to three different schools. There were many times that my kids would see him get off the bus in tears because he was teased or beat up. I always used those opportunities to talk to my kids about not teasing others. I encouraged them to not miss an opportunity to befriend someone who is “different” because they could miss out on a really great friend. Little did I know that all of this was preparing me for having a child with TS. God definitely has a plan.
There was so much about TS that I was not aware of such as how it goes hand in hand with other neurobiological disorders like OCD and ADHD. I was also shocked at how many teachers are not educated on TS or tic disorders. Many end up being educated from a student with TS or their parents. Some teachers are receptive and supportive and others are put off by the special needs of a student with TS. I fired Madeline’s language therapist because she commented to the preschool teacher that Madeline rolled her eyes at her. We were paying this woman way too much money to not know the difference between a defiant eye roll and a tic. Had she spoke to me about it I could have educated her on the difference.
Children with TS are actually the best educators of the disorder. Who better to teach than someone with TS? Jennifer Zwilling, is a teen with TS who co-founded the National Tourette Syndrome Youth Ambassador Program which trains kids and teens to talk about TS. The program gives young people with TS, their siblings, friends and classmates the preparation they need to speak about TS before their peers at school, sports leagues, scout troops, camps and after school programs. Understanding and tolerance are the program’s goals as well as dispelling misconceptions about the disorder. Part of the program is to have the students do an exercise where they experience what it is like for someone with TS. It’s truly amazing and you will have to watch the video to get the full impact of the exercise. Jennifer is such an inspiration that Madeline wants to become a TSA Youth Ambassador. She gave a TS presentation this past year to her fourth grade class and not only was it empowering but it had a positive impact on her classmates. Children can be so accepting of a child that is “different” once they understand what makes that other child different.
HBO also as a great documentary that features children sharing their stories about living with TS. It is insightful and heartbreaking. These kids just want the world to know that they are still normal kids despite their disability.