When Stink was young, before I knew he had Tourette Syndrome, he was making these scrunch faces. It would drive me crazy. They were unending, as well as unnerving, in consistency. I remember exactly where I was standing — in our dining room — and I barked, “Stink! Stop that! Right now!” At the end, as if it would soften the blow of my harsh voice, I sweetly added, “Please.”
Stink gazed up from his puzzle very sweetly and said, “Oh, Mama, I can’t help it! It’s like an invisible man is standing somewhere with a remote and controlling my face!” He then went back to calmly ticking as he linked together border pieces.
Five years later, Stink is still very much at peace with his tics. It’s me, his mother, who is still putting together the puzzle pieces of this diagnosis. I have good days and bad days. The good days are often when, for long stretches of time, his tics are very minimal. And then, shock of all shock, I get very frazzled when he has an upswing.
A few weeks back, despite my best intentions not to, I made mention of a sound Stink was making. He pointedly told me, “Mama, I can’t help it. It makes me feel bad when you talk about it.”
Of course it does. I win Loser Mom of the Year Award. I apologized and Stink forgave me. But honestly, what’s the point of writing of my own website and knocking myself crazy with his special diet and doctor appointments if I’m going to tell him to stop doing what he can’t help?
I don’t do it often. I know this kid is beyond confident and happy (I’d like to take some credit for this). But if his own mother gets frustrated outwardly, how can I expect him to not get shaken if kids get frustrated with his quirks?
It’s all very overwhelming sometimes. I had a good run of being strong and “OK” with everything. But the past few weeks, I’ve felt very very confused. There’s a fine line between advocating for my son, but being so caught up in his “progress” that I fall every time a tic rises.
I’m off to exercise, journal, and make that therapy appointment. For me. Because I’m just tired of this up and down roller-coaster — even more than I’m tired of the tics. Anyone else feel that way also?