TSA-IL had many wonderful events this summer, 18th Annual Run for the Roses, Golf Classic, 2nd Annual Summer Fun Event at Rainbow Falls Waterpark and we ended with a yummy bake sale! Thank you to all who volunteered and participated. We couldn't have done it without you!
For those with children getting ready to head back to school, it can be an exciting and anxious time. Will my child do well? Will their teacher be kind? Will he make friends?
To get the school year off on the right note, it is always a good idea to communicate with your child's teacher(s) before school starts. You might want to call and try to arrange a meeting or send a letter to describe all the wonderful and challenging aspects about your child. The following websites have many great ideas for such letters: Sample Teacher Letter, Letters to the Teacher from Special Needs Child and Writing a Letter for your Special Needs Child.
Our President has written an excellent article (below), Tourette Syndrome - More than Just a Tic Disorder which should be helpful in advocating for your child.
Enjoy the last weeks of summer!
Tourette Syndrome Association of Illinois
|From the Desk of the President
TOURETTE SYNDROME - MORE THAN JUST A TIC DISORDER
Understanding TS to Advocate For Your Child
by Sande Shamash
Tourette Syndrome (TS) is an extremely complex genetic neuro-behavioral disorder. Advocating for children with TS can be a difficult task. To be successful, it is important to have a solid understanding of the disorder as well as its impact on your child.
TS is primarily a tic disorder. To be diagnosed, a person must have both vocal and motor tics occurring for over a year (can be intermittently), with an onset before the age of 18. In most cases, TS is formally diagnosed by a neurologist or psychiatrist. Contrary to what is often portrayed on television and in movies, very few people with TS have coprolalia (the uncontrolled yelling of obscenities). Most motor tics are recognizable as tics: head shaking, twitching, shoulder shrugging, or eye rolling. Complex motor tics, however, can be difficult to distinguish from problem behaviors and are often interpreted as such, especially in a school, work or social setting. Examples might be tearing paper, poking, kissing, licking, jumping and obscene gestures. Vocal tics do not need to be actual word verbalizations and more often present as throat clearing, coughing, sniffling and humming. The physical aspect of this combination of tics can certainly interfere with your child's daily experience at school, but the social and emotional impact is often just as great, if not more profound. Feelings of social isolation, anxiety, rejection and a lack of self-esteem, combined with the constant fear of being punished by adults for uncontrollable actions is clearly not a productive or healthy way to get through a school day.
Although tics will wax and wane (appear and disappear) for various periods of time throughout the year, this unfortunately serves to reinforce the incorrect belief that people with TS can control their tics. While some students may be able to resist the urge to tic sometimes, this is only delaying the inevitable and the tics will still come out at some point. The effort and concentration it takes to resist ticing is extremely taxing and requires focus. This effort often interferes with the ability to concentrate on and follow school activities, whether listening to a teacher or working on a project. Because TS is a medical condition and the student cannot control the tics, the student should never be told not to tic. Later in this article, I will describe some APPROPRIATE ways to respond to or assist a student with tics, but reprimands or punishment are neither appropriate nor effective. READ MORE
|Youth Corner - Bradley Wilinski
SUMMER CAMP 2012
by Bradley Wilinski
This summer I got to go to a weeklong overnight camp at Camp Duncan. My experiences at TS camp were really cool. I got to make lots of friends with Tourettes and didn't feel alone with my TS.
At camp I got to have new expierences like going on a Zipline! It was a little scary at first but the counselors and the kids cheered me on and I was happy and proud that I did it!
I liked our cabin- I think it was the best cabin and group of friends in the whole camp. Our counselors were so great and most have them had been campers for years, and they liked it so much they became counselors. We played games like Capture the Flag, Quidditch in the pool, and Mission Impossible. All the cabins ate in the main lodge together and the food was excellent! My favorites was the tacos, and the nachos too.
If you wanted to, for a skill period you could do a craft like tie-dyeing a shirt. One night there was a talent show where I sang with my cabin, we got lots of applause and cheers. On the last night there was a dance that was awesome. It was outside, with lights and great music!
I would recommend the camp for kids with TS because it is so much fun, a great opportunity to meet other kids, and where no one cares if you have tics!
Do you have Tourette Syndrome? Have you found a creative outlet? Or do you have any questions for our featured Youth? Share your story or ask your questions by sending it to [email protected]!
|Lake Zurich Bake Sale a Sucess!
Lexie, Karen, Jonah, Shivani, Brian, Gunjan, Savannah, Jessica, Kayla and Andrew. Not pictured Sam and Alexa
A big round of thank yous to all who came out to support TSA-IL by purchasing delicious homemade treats in front of Wal-Mart in Lake Zurich.
This fundraiser was the creative idea of Karen Lai, a Junior at Lake Zurich High School. She began her preparations back in July. Then she and her friends spent a week making posters, shopping for ingredients, baking and selling their scrumptious treats from noon to 6:00 pm this past Saturday and Sunday.
Another big round of thank yous to Karen and her friends for all their hard work which paid off -- they raised over $900!
Karen and her crew enjoyed working with TSA-IL and look forward to volunteering at other events! Thanks again Karen, you showed that you are never to young to make a difference!
Ask the Doctor!
Do you have a question that has been bothering you or wish you remembered to ask the doctor?
Katie Kompoliti, M.D.
Send us your question and it may be answered in an upcoming newsletter. Odds are if you have this question, so do others.
All our questions will be answered by Neurologist, Katie Kompoliti, MD. Dr. Kompoliti has an extensive background with Tourette Syndrome and tics.
Send your questions to [email protected]