Tuesday, July 22, 2014

"Tourette Syndrome Isn't For Wimps"

Before I get into my post, I want to apologize for my absence from this blog for the past year.  A number of things have kept me from being able to write.  That will be explained on my other blog, Random Thoughts From A Stay-At-Home Mom.

I want to thank one of my friends for the title of this latest post.  When I saw her post this sentence on Facebook this morning, I knew that it was exactly what needed to be shared today.  This simple quote from my friend explains how I've been feeling the past couple of days.

Last summer, Monster Man and Little Man attended Camp Twitch and Shout.  It was Monster Man's third year, Little Man's first.  The experience was wonderful for both of them, and we felt we were so blessed to have the opportunity to send them to such an incredible place once again.  It was a place where they felt that they could feel like they were just like everyone else, a place where they could feel accepted.

Perhaps the hardest part of sending kids to a Tourette Syndrome camp (or any group setting for those with TS) is that they 'tic shop'.  This is where they pick up new tics from others.  In Monster Man's case, it meant that he came home last summer with three new vocal tics: "Happy, happy, happy", "That's a fact, Jack", and "Yo, my name is Greg!" (his name is not Greg, so we got a kick out of that one).  By about the third day after camp, the new tics had lessened greatly, typical to 'tic shop' fashion.  By the end of the first week home, they had practically disappeared.

The boys attended Camp Twitch and Shout again this summer.  Monster Man's fourth year, Little Man's second.  This time, the new tics that Monster Man picked up were not as easy-going as the vocal tics that he picked up last year.  He instead picked up a punching tic, one where he grunts rather loudly while repeatedly punching.  It's not that he's punching others, but instead that he's punching tables, desks, walls, cabinets... anything hard that helps him feel the sensation his body is looking for.  We're trying to encourage him to punch softer things, like pillows, the couch, or the bed.  While it's helping him to relieve the urge to punch, it isn't fulfilling the sense of pain that his brain seems to be looking for.

Instead of decreasing in frequency and intensity like typical 'tic shop' tics, this one actually seems to be increasing.  I actually had to take him to the doctor today to have his bruised, swollen wrist checked and to have his meds temporarily increased in hopes of helping him to get past this particular phase with his tics.  It is heartbreaking to see him go through all of this pain and frustration, sometimes having tic 'attacks' that last 30 minutes with little break for his body to calm down.  It is exhausting for him, and he is frustrated to know that he can't control this urge to punch right now.

Sadly, this punch tic seems to be fairly common, and it's not the only tic that can end up hurting the ticcer. Some beat their head, their elbows, or their shoulders.  Some kick.  Some bend their bodies in positions that hurt, or forcefully push their bodies into positions that sometimes even cause broken bones.  Some people with TS have pseudo seizures, which look much like a seizure but stop just as quickly as they come on.  Some go into a temporary paralysis, unable to move their bodies as they become limp and just fall to the ground.

Sure there are tics that can make people laugh.  We came to enjoy "Yo, my name is Greg!" in the short time it was in our house.  Some can make people smile, like chirping, blowing kisses, or saying "Happy, happy, happy."  A fellow TS mom recently commented on how big of hearts our TS children have.  They can be such loving children, and they are true blessings.  But it is important to remember that "Tourette Syndrome isn't for wimps".  Our kids really do go through a lot of pain with their experiences.  And that is exactly why we will continue to fight for awareness of what Tourette Syndrome really is.  Our kids shouldn't just feel accepted and 'normal' one week a year.  They should have that acceptance everyday, everywhere.

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