Wednesday, May 27, 2015

Tourette Awareness Month!

Many times I have heard people say "do your kids (especially Baby Mermaid) really have Tourette? Just because she only makes funny faces or makes small movements. I have also had a lot of people tell me that we just don't understand what its like to have "severe" Tourette. My friend Joann put a lovely post on facebook today and I am just going to copy it  and paste it! She put it so beautifully and truly described how I feel about what my kids go through on a daily basis!
It's Tourette's Awareness Month, and I just happen to have a few kids who deal with Tourette's on a daily basis. Tourette's causes tics... and tics are REALLY the craziest things ever. They can be very obvious, or, as in the case of my kids, they may not all be noticeable to most people. But, believe me, they are aggravating and frustrating.
A tic is an urge to move a body part / flex a muscle / make a sound / etc... and once you get that urge, and you execute that particular movement/sound/flex/etc. that urge goes away for maybe 1 second. Maybe 1 minute. Maybe 2 minutes. But it always comes back - again and again! AND AGAIN! Sometimes tics start to cause pain - when you tighten a muscle/make a movement hundreds, thousands of times in a period, your body starts to complain. One day, we were counting my daughters' tics - and we started laughing (!!) after about 30. (Really? Oh my goodness! How can someone function with 30 different tics, in 30 different places in that little body???) All this sneaky pressure building up in various places, just waiting to be flexed. Or moved. Or shrugged. Flexed again. Or exhaled. Meanwhile, continue living, functioning, testing, reading, writing, socializing. Flex the foot. Tighten a leg muscle. Make an impossible sound. Tighten a muscle in a place that NO ONE else can even move, let alone tighten -- in a place in the body that isn't even designed for movement. And do it again. And again. Until you want to cry from frustration and pain, but you can't stop, because that pressure - that NEED - doesn't stop. Tics don't end when you are ready for them to end. They keep going. There is NO END. Until there is. Sometimes it'll stop, and a different tic takes its place. And it may come back. It may not. Sometimes you have a tic that is ALWAYS THERE, forever, like an annoying friend who won't go away. Other tics will come and go, but you'll have one that never leaves. It's just all craziness.
Take a timed test! Stress usually causes tics to ramp up, which can make it so difficult to take the test in the required amount of time (start test, answer a question, flex fingers, answer a question, put pencil down to tap finger on desk, flex fingers, answer a question...repeat! 1 minute to take this kind of test?). What about that tic that causes you to tap keys on the keyboard? No problem! Unless tapping the keyboard keys messes up your timed typing test. FRUSTRATION!
Tourette's is quirky. Do you know how hard it is for a kid (especially a teenager) to fit in when they feel self-conscious about themselves?
Add Anxiety & OCD & ADHD to the mix. And depression. And so, so many more things. Tourette's mixed with OCD? WHAT KIND OF SICK JOKE IS THIS??? This is enough to give ME anxiety!
And, Mom, watch your child struggle, be in pain, cry with frustration. You can joke about the tics. Give them silly names. Try to be understanding. Compassionate. Try to teach your child that it's not all about getting that timed test done in 1 minute (even though they are totally capable... totally frustrated because they know they are capable!). Cry when your child is not watching. Hug him. Try to help the teenager with the overwhelming anxiety and frustration. Hold it all together.
Tourette's is not the worst thing that could ever happen to your child. It is not fatal. It is not completely debilitating. If I had to choose between Tourette's and a life-threatening disease, I'd totally choose Tourette's. But, during this month of Tourette's Awareness, I thought I'd just post some of my thoughts. If you've read this whole post, then thank you. If you wonder if I sit and stress and freak about about Tourette's - no, I don't (well, not usually, anyway). It's just our reality. We don't moan and groan and complain about it. We just live it, and keep on trucking along. Sometimes we have to address it - like when I had to take my daughter to the chiropractor to get adjusted, or when another child lets out a sound that you didn't even know a human being could make & causes you to jump out of your skin (for the first 10 times... and then you either get used to it, or send them to another room to loudly tic away to their hearts' content). My daughter deals with her tics best when we talk about them. A son deals with his by completely ignoring them and not letting us address anything remotely related to ticing (ha! if you hide from it, does it go away???), and another son has the kind of anxiety & stress which makes me often wonder if I'm even capable of parenting these amazing, talented, brilliant, ticing children.

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