The other day we were having dinner at Fazoli’s when a woman approached me and thanked me for being a good parent. WOW. Who does that? It was really very cool, and very validating. She said she enjoyed having dinner next to a family with children who listened and followed directions, instead of disturbing the peace. More Wow. I thanked her in return for making my day!
I was especially stunned by her compliment because my oldest son had spent nearly the entire dinner repeatedly making loud and annoying grunting noises. It seems she was one of the few people I’ve encountered lately who understood that this was not a behavioral issue–it’s called Tourette’s.
For years when he was small, and especially before he was diagnosed, I also believed he was just an out of control kid. His repeated behaviors and noises did not respond to any type of punishment or reward system. I listened for far too long to other well-meaning parents who offered me advice on time-outs and sticker charts that would somehow magically make the annoying behaviors disappear. Everywhere I went, I saw well-behaved, quiet children and I felt ashamed that I could not control my son’s outbursts. And then I became educated about Tourette’s and I stopped worrying about what other people think. But even with the best intentions, sometimes I guess it just wears me down.
Fast forward to last night. We made a quick post-dinner trip to the mall for some back to school clothes. At Macy’s, we split up and John took Henry upstairs, while I took Cate and TP with me. TP’s current tic just happens to sound exactly like a chirping bird, and it can be fairly annoying. I actually haven’t minded it because it follows his last tic, which was a coughing noise that made it seem like he had chronic bronchitis and made for a lot of “get your sick kid away from mine” staring at the pool this summer. So there we are, my son chirping away while we shop, and I notice, as usual, all the stares and the fact that we usually have the entire rack of clothes to ourselves within seconds of approaching. No problem. I have come a long way since he was two years old. I kept on shopping and chatting with the kids; everything is normal here. Just keep moving.
When we decided to go upstairs and my son couldn’t get on the escalator (it’s complicated, but basically his o.c.d. was demanding that he repeat all actions in exact backward order, which is impossible on an escalator), we headed for the elevator. For some reason, probably because she was overly tired, or perhaps to prove the nice lady in Fazoli’s wrong, my daughter chose this moment to have a little meltdown. It wasn’t a temper tantrum (I dare her!), but she began to whine “I want my Daddy! I want to go up the escalator!” just loud enough to embarrass me while I force marched her to the elevator. And then the elevator was out-of-order. ha!
So now I’m stuck downstairs at Macy’s with two crazy children. Still not a problem. I sent a text to John (side note: it is just WAY too cool that we both have phones now! How did we exist before?), and stood at the bottom of the escalator to wait for him to return. Meanwhile my daughter continues to openly sulk, and my son’s chirps grow louder, while I count the number of smug mothers who give me dirty “can’t you control your kid? my kid’s not chirping, you freak” looks.
At that moment I almost broke down. I spent several moments feeling sorry for myself and wishing I could sink into the cold tile floor, never to be seen in public with my children again. I sent out a quick tweet to gain support from my Twitter comrades (and within moments I had several remarks of support–thanks tweeps!), and then I gathered my children around me and put my chin up.
The point is this: judging others is ignorant. For all the thousands of parents who stare at me or “kindly” suggest I discipline my child for a disability he can’t control, there is only the one woman in Fazoli’s who recognized us for what we really are: a family trying to raise good children, despite the obstacles thrown in our way. Tourette’s is NOT a behavioral disorder; it is a neurological disorder that no amount of discipline can eliminate. My dream is to walk through a world where people smile at my son, and see past all the chirping, twitching, coughing and backward walking to the wonderful, well-behaved, intelligent and thoughtful being he has become. Likewise, when I see parents struggling to contain a shrieking toddler in public, I won’t snidely assume they need a parenting class. Because everyone has their own challenges–and you never know the whole story.