Yet, over and above all of these thoughts, the most important thought(or prayer) we have is, "Will my child be healthy?"
I would wager a bet(unless there is a strong family history) that giving birth to a child with tourette syndrome never crossed your mind. Webbed feet, maybe, but not TS. I know it certainly never played upon my mind. All I knew when Nick was born, was that God had graced me with the most wonderful child on this planet(and, of course, the best looking!) And above all, he was pronounced so healthy, the DR gave him a ten on his APGAR test.
I had heard of tourette's before Nick's diagnosis. My brother's best friend has a brother with TS. So, it was not an alien concept. My mother is a nurse, and both my brother and his wife were in medical school at the time of Nick's birth. But, at first anyway, we had no idea that the weird things Nick did could be contributed to TS.
As an infant, Nick was a quick learner, bright and happy. He sucked his thumb, walked at round ten months, and tossed his bottle at thirteen months. He grew irritated and fussy when tags rubbed his neck, and from the time he was a baby, I have been cutting tags, loose threads, and bothersome seams from his clothing. He absolutely loathed any form of breeze on his skin while I drove my car without air-conditioner. This odd quirk made for some awful car trips.
After he turned two, we were taking one such car trip, when he suddenly says, "WalMart." Since there was no WalMart in sight, I wondered what he meant, until I saw the semi pass us. I was stunned! By the time he was three, he was reading, and has not stopped. (this interests me because of a little know disorder called, Hyperlexia, which means accelerated reading; I have seen it linked to autism and TS).
We had him evaluated at three or four for hyperactivity, but we were fed the old "boys will be boys" line. Around this time, I noticed Nick's fierce temper. It seemed the smallest things could set him off, and it would take an abnormal amount of time to calm him down.
When he was five, we noticed he was sniffing his hands. A LOT. (one time I counted, and he sniffed something like twenty times in one minute)! We affectionately dubbed him, OBSESSO BOY.(little did we know...)He became obsessed with smelling everything. Around this time, he also began to twitch. He shook his head a lot, so I buzzed his hair. The head shaking stopped, to be replaced with eye blinking. He constantly snorted(sometimes still does) like a pig. I attributed this to grossly oversized adnoids/tonsils, and in May of 97, he had them removed.The snorting stopped...for a little while.
When he was six, I began to wonder if he didn't have TS. After writing a list of his odd behaviors, I was more convinced. But it wasn't until I began my relentless search of the net that I became 110% convinced my kid had TS.
I printed a folder full of pages from various websites, highlighting Nick's OCD, ADHD and TS symptoms. He was formally DX in November of 97.
Once he was diagnosed, I felt relief. Nick's oddities had a name, and we had medicine to help! He has been (successfully) on tenex for the past two years.
Some of the feelings I have as a mother are hard to cope with. I treat Nick as a normal human being. I openly discuss TS with him, and he reads a lot of the email that I get about TS. We can laugh and joke about tics(you should have seen him 'duckwalking' in the mall!), or crack one liners about OCD. This is the easy side of TS, to us. So far, his classmates have not made fun, and his teachers, while not as enthused as I would like, do know and respect his disorder, and he has never been disciplined for ticcing(nor will he be!)
When the rage comes, we all lose it. Sometimes, people tell me what a good mom I am, what a wonderful attitude I have towards Nick's TS(no shame allowed! honesty is best! etc), but they don't see the tears, the screaming and the frustration that comes with dealing with a TS induced rage. If your child does not have TS(or another such disorder), then your kid has normal rage. It goes away in an acceptable amount of time, and life goes on.
Not here.
Just last week, we experienced a rage that lasted(full blown-which means screaming, kicking walls, throwing toys, etc) for over three hours. THREE HOURS. All because we told Nick he could not go outside(it had just rained, it was muddy.) Did he comprehend this reasoning? No,he was stuck...his mind could simply NOT get past the notion that he needed to go outside. Did redirecting work? No, attempts to redirect were met with more outbursts.
How did we deal? Not so well. I wanted to literally disappear, just get in my car and escape to some far away place where silence ruled. My stress level was over the top, and so was daddy's. Trust me, this is not easy to deal with, and it taxes the entire family, especially Nick and his 3 yr old brother Drew.
Eventually, hugs were given, "I'm Sorry"'s were uttered, and the waters smoothed. But, we know, it will happen again. *sigh*
Thank God it doesn't happen every day. If that day comes, I don't know what I will do. For now, we take it one day at a time, and I try to keep my cool. (I said try!) I have some hobbies that allow me to 'escape' for a while...the net, my books. Daddy has his hobbies, too, to relieve the stress(my husband is the only one who works out side the home)...he has his wrestling and his books. We have to really struggle to give Drew the attention he deserves. It is so easy to give Nick all the attention some days(between rages and other TS behavior) and forget that Drew needs just as much.
We also find ourselves reading way too much into Drew's actions. He mimics his revered older brother, both good behavior and bad. This will be our duty to make sure we give him the guidance he needs growing up.
I would like to end this by saying take each day on its own. Look for the good, and ask for patience. I could stand to lose a few pounds, but if God granted me one wish, I would wish for the biggest heapin' of patience he could stuff into this old body. I am not a perfect parent, no one is, and to forgive is divine, especially when we can forgive our own mistakes, admit them, and carry on. Thank you for taking the time to read my story.
If you would like to write to me, please do so at boyzmomma@oocities.com or mario@cheerful.com.
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