Tourette Syndrome and Art

You might have noticed Art having various tics over the last few years, like blinking his eyes, moving his jaw, taking extra breaths when he speaks, stuff like that. You also may have heard an exasperated me or Ben trying to figure out how to deal with him being inflexible, impulsive or even explosive. Turns out it is all related to Tourette Syndrome, which Art was recently diagnosed with.

At the end of the summer we took him to a neurologist and the doctor said, without a doubt, that Art has Tourette's. That means Art's brain is firing for movements and impulses abnormally. It is diagnosed when a child has had both vocal and motor tics for more than 12 months and other tic-causing things are ruled out. The tics are aggravated by stress and fatigue, among some other things, and some Occupational Therapy things can help like chewing gum, sitting on a ball and some other random things.

Likely Art will have tics from TS through adolescence, probably with the tics fading or lessening in his late teens or so. There are medications that can reduce or calm tics, but not make them go away. We have a prescription for an as-needed medication in case he goes through a wave of really debilitating tics like the ones he had late this summer. His poor head was turning so much that he could barely read, but like all of his tics, it disappeared after a couple weeks and was replaced with something different. Often a child can suppress tics temporarily, like at school or a visit with friends, but they will come out eventually so sometimes kids at school will be allowed to leave the room whenever they need to and go let them out somewhere in the building. So far Art has not mentioned doing that.

As for the associated disorders that often come with Tourette's, like Sensory Processing Disorder and Obsessive/Compulsive disorder, Art shows signs of some of those in varying degrees and we are trying to be proactive to help Art manage them. Like if the girls are really loud at dinner, which they often are, we stick some noise reduction headphones on Art before he loses it. Or if he's having a hard time moving on from an activity or disappointment, we try to figure out a strategy to get him past it instead of digging our heels in. Basically, we don't try to "fix" his meltdowns or little obsessions anymore (which never worked anyway), we try to stay clued into what he might be going through and help him navigate.

And with our increased compassion and empathy his really lovely nature has had a chance to show more at home. He asks the girls how school was or makes cool paper things for Lewis. He races to get the milk and glasses for dinner so I don't have to get up. (He also whines about cleaning up after dinner, but that is not related to TS so I am digging my heels in about that.)

All of this is tiring, though, for us and for him. Ben and I are so often weighing the effect this or that will have on Art... Art worried for a while that he was the only one in our family with something "wrong with him". I told him that wasn't true. I told him I have depression and have had it for a long time. He found that really comforting to know he wasn't the only one. He asked me lots of questions, like if Ben knew I had depression before he married me, or if it ever bothers me to have depression. And we talked about Papa having arthritis in his hands.

And from Ben:
I think we feel really grateful and relieved that we know so much more about how to help him. I realize now Art's behavior is often beyond his ability to fully control it and knowing that from a solid diagnosis has empowered me with more empathy and patience. Maybe I shouldn't have needed that but it's helped! He's always been an extraordinary little boy, full of empathy for his siblings, love for us and awesomeness to his core.