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Sunday
Nov152009

Living With the Actual Tourette's Boy

I was going to go to bed. Read. Relax. Enjoy some time where the kids weren’t at each other like a married couple in their 40th year of a loveless union.

Instead, I’m up. I’m listening to my 12yo sit at the dining room table working to relax himself with a pile of LEGO bricks and a podcast on Wolfram|Alpha as his body runs through a series of vocal tics, the most offensive of which sounds like he’s going to vomit.

Tics wax and wane, like the phases of the moon. Not with the predictability of the lunar cycles, however. Instead, people with Tourette Syndrome and their families ride the waves of tics as they come and go. Sometimes the tics overlap one another. They can be vocal or motor in nature. Complex or simple. And every person’s experience is a little bit different.

For all that my son has been through because of TS, he’s surprisingly nonchalant about it most of the time. It’s just who he is.

But as his mother, in the other room, listening to him choking, sniffing, gagging—it hurts my heart. And it sucks.

Reader Comments (6)

I'm sorry...it's hard...and I hope he's able to work through tonight's tics and sleep soon.
November 15, 2009 | Unregistered CommenterGenie
*Most* of the time my tics go by as any other usual day to day drone, never mentioned, cause everyone in my life is just used to it. I can say the people in my everyday life don't even really notice it, well unless they are particularly bad that day. Stress DOES play a big part in it. *I* can tell when they're bad, and according to my freshly fired "specialist", they don't bother anyone BUT me. Well, me and STRANGERS who aren't used to it, like the cardio lab tech that did my stress test last Friday who kept stopping the darn test asking if I was SURE I was okay, cause I kept squinting my eyes tightly making strained noises from my throat.... even though I told her I had Tourettes the minute I walked in the door, kinda like a heads up?

Uggh, I SO know what he's going through and sadly for see a future of ignorant uneducated adults that just don't understand what this is, or what we deal with on a daily basis, but I take comfort in knowing what a awesomely strong kick ass Mama he has and know he'll fare just fine in ignoring the ignorant!

Growing up in the 80's Tourette's was rarely discussed or even given the respect of being called a disorder, and I'm hoping with all the technology and advancements in modern medicine things will be easier for him. People can be so rude and cruel, but thankfully with Tourette's we also inherit a thicker set of skin!

Still, as a Mama of a child with this disorder, I KNOW how your heart hurts for him. All any mother could want for her child is to be able to "fix" them when they're sick, etc. I know the pain my own Mother suffered every time she'd catch a stranger staring, wanting to defend me, explain to them WHAT it was. Even to my own Grandmother when she lived with us,who would constantly berate me about it, not being able to sit in the same room with her without getting whopped with a newspaper and a snappy "Quit that!" every time my vocal tics became louder than the news.

Anyway, I just wanted to let you know ya'll aren't alone, and tell him he's lucky to have such a strong Mama in his corner and he's always welcome to come hang out with a hot babe who is just like him! ;)
November 16, 2009 | Unregistered CommenterO'Neal
I don'tknow much, but I know he's lucky to have you for his mom! :)
November 18, 2009 | Unregistered Commentervicki
Thank you. :)
November 19, 2009 | Unregistered Commentercalifmom
Wow. I didn't know that about the gagging and stuff. ;(Amen that he is lucky to have such a great mama. ;)
November 22, 2009 | Unregistered CommenterAl_Pal
Yep. My daughter has had a cough sounding tic for 2 weeks now. Only when she's in bed trying to go to sleep. Thankfully, I only poked cough medicine down her throat one night before I figured it out! :)
January 23, 2010 | Unregistered Commenterbrenda

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