Last week, I proudly watched my daughter Tess give a presentation on her life with Tourette Syndrome to a high school class in South Brunswick. I was amazed at her poise, confidence and desire to educate others about TS. The students were listening intently, and — when given an exercise designed to simulate ticcing while writing — got an appreciation of what it’s like to deal with the condition.
I have always been a strong believer in the power of advocacy and education to de-stigmatize Tourette and other disorders. As the students watched Tess, I hoped that they would empathize with her and view her desire to speak to them as a call to make a positive change in how they view TS and people who suffer from it.
Although my rational side knew that Tess was making a positive impact in that classroom, I still couldn’t help my mind from wandering to thoughts of “What are these students really thinking about this little girl and her struggle? Do they view her with empathy or pity, as strong or weak, or were they just indifferent to the whole experience? Will my daughters’ presentation really make a difference?”
It was clear from conversations in the room afterward that the message was received and the answer to my question was YES! A few days later, any lingering doubt as to whether Tess’ talk made a difference was brushed aside in the form of an e-mail.
Thanks to an NJCTS press release and subsequent newspaper article on her presentation, the mother of a young boy struggling with Tourette reached out to the teacher of the high school class. Her son, who attends a different school, was having difficulty explaining his tics to classmates – they didn’t understand TS and he was feeling very frustrated and isolated.
She asked if it was possible for Tess to come to her son’s school and help him educate his classmates. I thought to myself, “Tthis is what it’s all about — imagine the impact that my daughter and her message can have on the life of this boy!”
By taking the time to advocate and educate, reaching out to groups of people or one person at a time, each of us can make a profound difference in the lives of our loved ones with Tourette.