Please watch this YouTube link! It was my son’s entry for a scholarship from the New Jersey Center for Tourette Syndrome. I was so proud of him and it was a great accomplishment for him.
Just remember: We lose our way, but we get back up again, and it’s not forever. Things do get better!!!
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. Continue reading
I haven’t always been able to change the tics, but I’ve been pretty successful in changing my attitude. (Though sometimes I have a good pity party like anyone else. I’m far from the master of serenity!)
My attitude has helped my son far more than any diet changes we have made. Here are some videos that might help some of you new moms dealing with a big bad TS diagnosis. It doesn’t have to be the end of your child’s future. In fact, it just might be the beginning of your kids amazing humor and character.
And please come say hi to me at my Tourette’s website, www.lifehappins.com.
NOTE: The following is a personalized advertisement of sorts, just for NJCTS, that we at TSParentsOnline thought would be very useful to parents of kids with Tourette Syndrome, especially during the holiday season. Enjoy!
Re-train the brain with SingFit, a revolutionary new music App that was developed by a board-certified music therapist to allow people with autism, Alzheimer’s and other special needs to engage in the health-enhancing, mood-elevating, universal experience of singing.
SingFit’s Lyric Coach system allows users to enjoy a successful singing experience regardless of their ability to read the lyrics to a song, making it the perfect tool for family members, music therapists, caregivers and other health-care professionals.
Scientific research reveals that singing engages the brain in unique ways that increases the ability to focus, enhances the immune system and reduces stress. Most recently, singing therapy has captured headlines surrounding Congresswoman Gabrielle Giffords’ miraculous recovery of how music therapy has played a huge role in rewiring her brain.
And while there are no clinical studies available that speak to specifically to the impact of singing on Tourette’s Syndrome, there are many very high-profile anecdotal cases of the impact of making music on Tourette’s — most notably the case of a young man whose Tourette’s tics disappear when drumming, as documented by Dr. Oliver Sacks for the Nova documentary Musical Minds. Continue reading