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. This is the follow-up to my previous post, which was also written originally for the newsletter. I will share more of the articles in the near future.
Monster Man was always so different from our other two kids, as well as from all my friends’ kids. When he was five weeks old, I woke up to find him blue. He’d developed what turned out to be the first of a series of respiratory infections. By the time that he was 18 months old, he’d spent a total of 15 months sick, with only a few good days in between the many bad ones.
Perhaps because of his lack of energy, he didn’t really hit his terrible twos like most kids do. He would have a few temper tantrums here and there, and he’d have his naughty moments, but his bad moments were few and far between. He spent so much time sick that he rarely had any energy, so we would rejoice at the moments when he would get into the usual toddler mischief, climbing on things, getting into things, and fighting with his big sister over favorite toys. The only times that really stuck out in our minds were the times when he’d get extremely upset and would gain a significant amount of strength – times when he’d flip the end tables, lamps and all, because something wasn’t going his way; when he had to have stitches and it took five adults to hold him down while the doctor stitched; when I wrestled with him in a parking lot for over 45 minutes, holding him tight to keep him from running in front of a car. Those bad moments didn’t happen often, but when he did have his moments he took them to the extreme. We didn’t realize at the time that he was having rage episodes, instead passing off the temper and the strength as being a combination of a temper tantrum and the steroids he was on to strengthen his weakened lungs.
For every bad moment, there have been at least a hundred more good moments, especially once Monster Man started feeling better and his lungs began strengthening. That was when his personality really started to blossom. The boy has been full of character from that moment on! He always keeps us rolling with laughter at his crazy antics, many which start with his incredible imagination. From the time he was about three years old until well after his fifth birthday, he believed that he was Santa Claus. He truly believed that he was the future Santa, “training” daily for the nights he would spend delivering presents. For two years, he walked around wearing a Santa hat (yes, even during the summer), which was often paired with a red sweat suit his Grammy had added white fur to. When he told me one year that all he wanted for Christmas was a sleigh and eight reindeer that could really fly, I was left looking for a present that wouldn’t disappoint him.
In the months preceding Monster Man’s diagnosis, I joined the National Tourette Syndrome Association Facebook page. It was there that I discovered that so many people with Tourette Syndrome exceed in some type of art. Some are writers, some are singers, some are dancers, some are painters or sculptors, some are photographers, and some work in art in ways I never thought of before. Just about all use their art as a form of therapy. I guess this would be where Monster Man’s overactive imagination comes in handy, especially when he’s drawing…