Thursday, October 23, 2014

My boy

My son is 10 years old. He's my first born, my boy, and he's a great kid. He's very much a little boy at times, but he's an old soul, with an emotional depth and maturity level that catches me off guard at times. Last week, he was officially diagnosed with Tourette Syndrome. Life was no different after the diagnosis than before - the symptoms he's experienced for years now were the same, and we weren't advised to do anything differently. The diagnosis was not at all unexpected. Still, it really, really bummed me out. Something about attaching a name to it made it real in a way it wasn't before, and who wants their child to have a syndrome? It sounds ominous, right?

It's not. We first noticed his tics in the summer before he started third grade, a little over two years ago. At first it was his eyes darting back and forth. It took a while before we realized it was involuntary, and he didn't know he was doing it, so we stopped yelling at him to cut it out. That's called good parenting. Eventually that one subsided, but he started making noises - little humming sounds, almost like he was clearing his throat. When that went away, it was the eyes again, sometimes darting, sometimes rolling, or it was some other little noise he was making. The frequency comes and goes. Some days it's not noticeable at all; some days it's fairly constant.

Tourette Syndrome is a spectrum disorder, and it appears that he is on the mild end of the spectrum. It is thought to be genetic, and interestingly, when we really started to think about it, it is entirely possible that my husband and I both have a parent or grandparent who may have had it. According to the doctor, many people are never diagnosed. An involuntary tic may just be seen as a habit, and some people do age out of it. 

I guess the bottom line is that it's not a big fucking deal. It doesn't affect his ability to do anything and everything he wants to do. It's just a thing about him that he can't change, and if there's one thing I learned from Dirty Dancing, it's that if you love someone, you have to love all the things about them. Actually, that is a lie. I learned nothing from Dirty Dancing. I just wanted an excuse to reference that scene so I could also reference this reenactment of the scene performed by Jerry Orbach and Conan O'Brien, which I enjoy immensely for some reason. RIP, Jerry.

So why was I so bummed out by the diagnosis that changed nothing and wasn't a big deal? Because I'm afraid. I don't want my child to be different in a way that will make things difficult for him. I don't want kids to make fun of him and give him a hard time and hurt his feelings. I'm laying my fears all over that poor kid. I had to stop and think about that. Do I want my children to strive for sameness? To fear anything that makes them stand out? Of course not. We're all different, and I always want my kids to feel free to be uniquely themselves. So, why should I be afraid of any part of who they are? Especially when they're not.

We've talked to him about the tics and about how people react to them at times. Before we took him to the neurologist, he told us if there was medication to take the tics away, he didn't want it. Because they are a part of who he is. He thinks of them as a superpower that helps him know who his real friends are. When people give him a hard time, he rationally explains to them that he can't help it, and that's just the way it is. He doesn't give it any power. He doesn't allow it to limit him. He participates enthusiastically in school, he runs for student council, he tries out for school musicals, he sings in the chorus, and he'll play any sport with anyone any time. He puts himself out there, unabashedly. He put the diagnosis in perspective long before we ever got it. That amazing 10-year-old kid. I only hope to be more like him when I grow up.


  1. He's captured my vote for most admirable and perceptive person of the month. Good parenting? Dumb luck? Who cares? He's a great teacher and I look forward to hearing more on him. Just a sidebar, but my oldest went to her junior prom with a handsome young man with the same diagnosis. He was beautiful, a community servant, very smart and a gifted long distance runner. He was sought after by many colleges and pretty little girls. He's grown into a man of exceptional character and heart. Perhaps because he came to a new perception of himself just as your son has. How awesome is that!!?? Xoxoxo Jane