This past week, our family, friends and community were treated to an amazing display of courage, power and advocacy. Our 12-year-old daughter, Tess, who was diagnosed with Tourette Syndrome when she was 5, gave a presentation entitled “My Life With Tourette Syndrome.” The talk took place at the Religious School of our synagogue (Congregation Kehilat Shalom in Belle Mead, N.J.) and it was attended by more than 90 people.
As part of her Bat Mitzvah community service project (to support the New Jersey Center for Tourette Syndrome), I was proud that she even wanted to do the talk. I thought that no matter what she did, the room would be filled with love and support for her (plus a little education for anyone who didn’t know about TS), and that she would feel very proud of herself for having done something that would scare most adults! I thought that was exciting enough.
While I knew that she would do a great job, I was unprepared for how spectacularly she presented her material. She wrote a speech with honesty, humor and education. She practiced it faithfully, took some suggestions from us and from materials provided by NJCTS, and ultimately came up with a “multimedia” presentation.
In addition to her speech, she chose to show a clip from the HBO documentary “I Have Tourette’s, But Tourette’s Doesn’t Have Me”; to show pictures from our raffle trip to meet Tim Howard; to have the crowd do an activity where they were given “tics” to deal with; and to have a display table of T-shirts, hats and pamphlets from NJCTS, as well as books and DVDs relating to TS and OCD.
When it came time to deliver her speech, she presented it with poise, laughter and confidence. She ticked freely throughout the talk, while still seeming completely relaxed! She held everyone’s attention for 30 minutes and fielded many questions. She never once looked at us for help — even for the really hard questions. She kept her cool and her smile the whole time.
We could not be more proud of her and I think that she will carry this day of power with her for a long time to come! She was invited to give more talks in the future, and the principal of the school said this to her in an e-mail that she sent later that day:
“We can truly learn so much from you. I admire your ability to be so open and brave — not everyone could have done what you did this morning!!! As Rabbi Yehudah HaNasi once said, ‘I learned much from my teachers, more than that did I learn from my colleagues, but most of all from my students!’ Boy, that was true today. Thank you, thank you, thank you.”
To our supportive community — NJCTS and our synagogue — we say thank you for so much: for your guidance, advice and overall support. To our amazing Tess, we say – we love you and just could not be more proud.
If we could have chosen any road for you to deal with the challenges of TS, it would be strength, power, confidence and advocacy. That you chose it yourself is a gift you have given yourself for life!
Is there a link where we can see her presentation? I would love to hear what she said. My son has had TS since he was five, and he is nine now.
Hi Jennifer, We have not yet posted the video of her presentation. We are still looking into how to post it in a way that is only viewable by people we invite (like our NJCTS family!). I will let NJCTS know as soon as we figure it out.