"Tourette's . . . Isn't that where you randomly start cussing?"
"I saw a video of a kid with tourette's, it was pretty funny."
"Oh my gosh! That kid must have tourette's!"
A few years ago, statements like these wouldn't have bothered me at all. I didn't really pay attention to them. Sure, I'd seen the videos. But I didn't really care.
That was before Joey started twitching.
Joey is my cousin. He was ten years old when he started exhibiting repetitive, nonrythmic twitches (called 'tics').
It wasn't bad at first; it just seemed like he was blinking more than normal. Then he started turning his head to one side and snapping it back really quickly, like he'd heard a noise behind him and wanted to see what it was. Both tics started off slow at first and then increased. When school or his rigorous soccer schedule stressed him out, he would hit himself in the stomach repeatedly. He couldn't control it and it would make him cry, which, of course, just made the tics worse. His grades dropped and the kids at school made fun of the way he would open his mouth and turn his head a few times a minute.
His mother took him to his pediatrician and they brought up the possibility of Joey having Tourette's Syndrome.
Gilles de la Tourette's Syndrome, commonly abbreviated as TS, is one of several disorders that manifest through tics. It's classified as either transient or chronic depending on how long the tics occur. Although TS is a fairly severe form of a tic disorder, Joey's case was diagnosed as mild and the only treatment provided was to "keep an eye on him."
Three years later, Joey's doing just fine. He still has some involuntary movements which worsen with stress, but no new tics have developed and his classmates have grown past their initial teasing.
An official TS diagnosis requires two things: the exhibition of motor tics and phonic tics. Motor tics have been described as "normal behaviors gone wrong." For example, it's normal for a person to blink. However, a person with tourette's will blink excessively. (Blinking is the most common motor tic.) Phonic tics involve sounds. The most common of these is throat clearing.
Motor tics vary from person to person. Tourette's is very much an individual disease. Most people tend to go through cycles of "waxing and waning," where the tics get worse and gradually decrease. A patient can also suffer from bouts of tics, which can be brought on by stress. Both of these generally occur unpredictably.
When someone says "tourette's", a lot of people think of a little kid spewing out profanities. This is called "coprolalia" and is EXTREMELY uncommon in TS patients. Just around 10% of people that have TS exhibit it, but, because it is widely publicized, many think that it is the only symptom.
TS affects children ages 5-12 the most severely. During puberty, the tics reach a kind of peak and then decline, never quite going away. While many patients report that they do not experience any tics into adulthood, they often do. Patients with TS have a normal lifespan.
The biggest problem Joey had with his case of TS was his friend's reactions. They thought he was weird. They laughed at him until he cried. It caused his grades to drop and eventually he just stopped caring about school all together. When I think back on that, it makes me so angry. A little boy who'd always been like my second little brother was put through all this pain and agony simply because people didn't understand. And they still don't.
I was out shopping with Joey, his brother, and sister the other day. Joey's tics were worse than normal because he had a championship game that night. I was letting the kids get slurpees (I'm their babysitter, so I have the power to dole out sugar as I see fit!). Joey's arm twitched and he spilled his slurpee all over his soccer uniform. I was helping him clean up when I heard a guy behind us say "Look at twitches up there! He looks like such an idiot!"
Joey heard and he was crushed. It had been a while since anyone had teased him about his condition. Immediately the tics got worse and the guy behind me laughed harder.
I turned around. The guys were about my age (go figure . . .).
"He has Tourette's. What's your excuse?"
I grabbed Joey and his sister's hand and we walked up to the register.
And even though he was on the verge of tears, I swear I saw Joey stick out his tongue at the jerks behind us and smile.
Get informed, Whyville.
Author's Note: This article was inspired by Yayapie's article, "Autism" (ID 11353). Most of the information in this article came from http://www.ninds.nih.gov/disorders/tourette/detail_tourette.htm. It's a great source if you want to get informed. The other odds and ends were things I picked up from working with my Aunt and cousin on a daily basis.