Hi! I'm Jess. I'm 35, and was diagnosed with Tourette Syndrome at the age of 4. Because I was so young and because there wasn't a whole lot of information out there about TS at the time, I don't remember a whole lot about my experience with it before middle school. I very vividly remember my annoying tics...lots of sniffling, throat clearing, jaw cracking (which explains the TMJ I now have), eye rolling, finger snapping, head jerking, and other random and crazy twitches I've had forever. As I've gotten older, I found ways to manage them so that they're not as noticeable to others. To be perfectly honest, I didn't think about it or worry about it too much...until my son started showing signs of TS.
My husband, Scott, does not have Tourette Syndrome. I'm not sure he'd ever even heard of it before we were married, and he's either not noticed or not mentioned my tics over the years. I think our son's diagnosis is hitting him hard because it's something that he can't work with him on or fix for him. He's learning a lot and becoming more understanding and patient with Gerry's ticking and odd behaviors.
Gerry is 6 years old now and was just diagnosed this past August (2019). He started with a facial twitch and throat clearing, but his tics have recently ramped up a bit. Now we can add head turning, feet shuffling, and a very loud goat noise to his repertoire. His teachers report that he's focused and calm at school, which may explain why he comes home and just unleashes every afternoon.
Bailey is 9 years old and neurotypical; she does not have Tourette Syndrome. In the very beginning, she was highly annoyed by Gerry's tics. To be fair, a few of them are annoying, especially to someone who has no experience with TS. But, now that she's learning a bit more about TS she's started sticking up for her brother and being more patient with him.
Lincoln is 3, and he's my wild card. Honestly, I don't know if he'll have TS. Right now he is considered neurotypical, but TS is 4 times more common in boys than in girls, and the fact that there's already a family history puts those odds even higher. My hope for him is that he'll remain without TS but a diagnosis is not a death sentence and honestly? It's not the worst thing in the world. We'll cross that bridge if and when we come to it.
Navigating the world of TS as a parent is a completely different and scarier experience for me than navigating it as someone who has the diagnosis. I know a bit about what Gerry can expect as he gets older, and I feel more anger on his behalf than I ever did on my own. BUT...I believe in facing challenges with humor, and that's what I plan to do (when I'm not feeling guilty and sad and all the other emotions that come with being the parent of a child who is considered "special needs"). My hope is that Gerry learns to approach his diagnosis with humor and understanding, and that both Bailey and Lincoln learn patience and empathy from whatever struggles come our way.
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