May 15 - June 15 is recognized as Tourette Association Awareness Month. (Yes, it's weird that this month of awareness is half of May and half of June instead of just one complete month.) Throughout these 31 days we aim to increase awareness about Tourette syndrome (TS) while advocating for those suffering from this disorder.
For those of you who are new here or who may have missed the posts in which I've touched on this information, Hallie has TS. We started seeing tics around her seventh birthday, and she was officially diagnosed the summer before second grade. I wrote a little about that time in her and our lives here on Chasing Roots, in her eight-year-old birthday post.
TS is constantly changing, which means some hours, days, weeks, months, and even years are good...and some aren't. Hallie tries her best not to complain (my mom told me the other day that in six years she's only ever heard Hallie complain ONCE), in part because she knows she's one of the "lucky" ones, but there are days when the weight of TS becomes too much.
What does it mean to be "lucky", when it comes to TS? For us, it means that 1) Hallie has never had any vocal tics, which draw more attention - usually - than motor tics. I know that as much as she hates her motor tics, Hallie is glad she doesn't have vocal tics. 2) Hallie has learned how to use dance as a coping mechanism - or even "treatment" - of sorts. Moving her body so intentionally quiets her tics and helps her feel in control, at least for short periods of time, of what her arms and legs and hips and shoulders are doing. 3) Hallie has wonderful friends who love and support her no matter what.
Most people don't know much about TS, and many people have an inaccurate understanding of TS. So here are a few facts to set the record straight:
- TS is a neurological disorder that causes tics. Tics are sudden, involuntary, repetitive movements and sounds.
- TS does not affect intelligence.
- TS affects around 1 in 100 children, more of which are boys than girls.
- The cause of TS in unknown, but it is believed to be genetic.
- Tics come and go, and increase and decrease in intensity.
- TS is different for every person who has it.
- Corprolalia (the swearing tic) is very rare - only about 20% of those with TS have it.
- There is no cure for TS.
- Don't stare or draw attention to tics, and don't ask your friend not to tic. Though it can be difficult at times, try to pretend the tics aren't happening.
- Don't try to fix your friend, but do pay attention to subtle signs of distress and offer support. (Just like you would do with friends who don't have TS.)
- Don't joke about TS, and if necessary, stand up for your friend if others are bullying, taunting, insulting, or making fun.
- Follow your friend's lead with regard to TS and tics. Some people feel comfortable talking about it, while others do not.