by Kathy Giordano, TSA Education Specialist
“Because of her, my life has completely and totally changed.” This is taken from a school report that a young girl wrote concerning her struggle with Tourette Syndrome and a person who had presented to the class about this and related disorders. She discussed her difficulties with the teasing from her classmates and the gratitude she feels as a result of an in-service provided to her classmates. There is no better compliment than this.
Many parents are reluctant to have a person discuss Tourette Syndrome with their child’s classmates. I understand their reluctance. Typically if a parent makes a request that someone speak to classmates, it is because some of them are teasing the student for symptoms. Parents and students are afraid that admitting the student has a disorder will only give the other students ammunition to increase their harassment and teasing.
However, giving the behaviors a name, and comparing them to things that are familiar such as asthma, diabetes and even hiccups, helps classmates understand. Understanding leads to acceptance and even support. Children can be very accepting if they have an opportunity to hear an honest explanation followed by a chance to ask questions.
Soon after a presentation, the difference in the child’s social-emotional life is very often astounding. Typically, teasing is reduced dramatically and frequently, classmates will defend the student against other students’ teasing as well as the disapproval of teachers who are not aware of the situation.
In-services are not only important as an antidote to teasing, but also they say to the child with Tourette that he or she does not have to hide symptoms or keep them a secret. Too often secrets are related to shame. Understanding and honestly discussing symptoms can be an important step toward acceptance of having a disorder. Since symptoms can vary, are inconsistent, and are vastly misunderstood, acceptance becomes a very important component to having the student self- advocate for services as he gets into high school, college and the work force.
Not telling the classmates allows them to continue to believe that the noises, movements and behaviors are purposeful and are intended to annoy others as well as disrupt the class. Many teachers feel trapped in a difficult position, needing to defend the child because of his symptoms but also needing to respect the confidentiality wishes of the child’s parents. Students can relate to having hiccups, scratching an itch, or sneezing at inconvenient times and finding themselves reprimanded or made fun of by others. Giving information to the students helps them relate to the uncontrollable symptoms, and helps them gain an understanding.
Presenting information to classmates can be a tough decision, but an in-service given when children are younger has a better chance of increasing acceptance and supportive behavior from classmates. It also will be sending a clear message to your child that you don’t feel ashamed of him or his disability, and neither should he.
