Saturday, January 7, 2012

How it all started

I originally wrote this article for the Tourette Syndrome Association Georgia Chapter's monthly newsletter a few months back.  I've made a few changes, but it's mostly written as it was in the newsletter.  Since some of you missed how this all started and wanted to know more about how we found out Monster Man had Tourette Syndrome, I thought it would be nice to share the article with you.  I will share more of the articles in the near future.

“Monster Man, stop clearing your throat.”  We must’ve said that exact sentence 1,000 times in the one school year that I’d taken our son out of school to homeschool him.  He’d been blinking excessively in recent months, too.  His allergies were probably just acting up.  Time to break out the Claritin, I kept thinking.  The Claritin seemed to ease some of the symptoms, especially once the sniffling started up, but still Monster Man continued to clear his throat.  I can’t begin to count the number of times that I checked his throat to see if he was getting sick on me.  It took about 8 months of treating the symptoms with Claritin and telling our son to stop clearing his throat before he finally admitted to me that he couldn’t control it.  No matter how much he tried to stop it, it only got worse.
When it was time for Monster Man’s check-up at the pediatrician, I mentioned to her the symptoms that he’d been having.  Since my husband has epilepsy, I had been told years earlier to report to the doctors any unusual behavior that I’d noticed.  Certainly the inability to stop clearing his throat would be considered unusual.
Our daughter had been sent to the hospital for tests a couple of years earlier, ruling out epilepsy at the same time that she had a sleep study done for possible sleep apnea.  I figured Monster Man would be sent for similar tests.  Certainly it wasn’t anything we should really worry about, just preliminary tests, right?  I wasn’t at all prepared for what the doctor told me at that check-up.
“Those are tics,” she’d told me after I had confirmed with her that they got worse when he was told to stop.  She then continued on to tell me that tics didn’t always mean Tourette Syndrome, but that she wanted my son to see the neurologist to find out. 
Wait a minute.  Tourette Syndrome?  I was blown away by the suggestion alone.  All I knew about TS was the little bit I’d seen depicted on television shows and movies.  When I got home from his check-up that January morning, I immediately got online and began researching information.  The TSA website was helpful, opening my eyes to how different Tourette Syndrome is from what is so often shown on television.  It also helped me to realize that Monster Man had been showing many of the symptoms for far longer than I had even realized.  It only took a few short days for me to decide in my mind that this was exactly what we were dealing with.
Monster Man wasn’t able to get into the neurologist until that October, over nine months after receiving the referral from his pediatrician.  By the time that he was able to see the neurologist, he’d developed over 20 new tics as well as having developed severe problems with anxiety.  Thankfully, we’d had all those months to prepare ourselves and Monster Man for the official diagnosis. 
While I had been able to prepare our family for the diagnosis while waiting for our appointment, I had also discovered that there were two things that really disappointed me.  First, there was no active Georgia chapter of the TSA, which meant that it would be harder for our family to find other families we could relate to.  We wanted Monster Man to be able to make friends experiencing the same thing he was, friends who would help him feel like he wasn’t alone, friends who would understand all the changes he was going through.  Second, the vast majority of the information that I was able to find was on medical websites or advocacy websites.  There was very little written in terms that the average person could fully understand, and there was even less that was written from the point-of-view of someone living through the diagnosis, the changes, and the daily struggles.  Both of those things are being remedied.  Georgia is finally getting a chapter of the Tourette Syndrome Association, and I have started a blog on Tourette Syndrome.
For our family, the new Georgia chapter of the Tourette Syndrome will give us a chance to connect with other families that have experienced what we are experiencing.  It will give us a place to turn to for advice and support.  Most importantly, it will give us a place to find new friends.
As for my blog, it has been designed to serve myself as well as others.  When I started What Tourettes Has Taught Me, I had intended it as a place to keep my friends and family informed of the changes going on in Monster Man’s life.  I soon realized that it was a great source of information for those who are newly diagnosed, those who are awaiting diagnosis, and those that just want to learn more about Tourette Syndrome.  It didn’t take long for me to realize that writing my blog was also therapeutic, giving me a chance to get all of my frustrations and my celebrations out of my head.  It shouldn’t have come as a surprise to me, since I’ve always been better at expressing myself through writing instead of through talking.  It’s amazing how fast typing all my thoughts out can remove the weight off my shoulders!
Writing my blog has also helped us to discover just how far back Monster Man started showing signs that he was different from other kids, and how young he was when he started showing symptoms that went unrecognized – symptoms that were easy to pass off as being something else.  How easy it was to answer the question of “Why does he do that?” with “because he is Monster Man”  Kind of like the two years he spent believing he was Santa Claus…

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