My son slipped off a garage step yesterday, tumbled into the recycling bins — scattering cans and plastic bottle tops — and smashed my new cell phone that was in his hand onto the concrete floor.
He is fine, the mess is cleaned up, and now when I use my cell phone with the shattered screen, I’m reminded for the 100th time today that he has Tourette Syndrome — that he tends to be clumsy because of this disorder, and that — sprawled out on the garage floor, looking up at his sister, our neighbor and me — he was feeling only the first of many embarrassments to come throughout the course of his fifth-grade day.
As parents of kids with TS, we live in homes with cracked phone screens, frequent spills, holes in walls and countless casualties of complex motor tics, scarce impulse control and fits of rage.
In addition to our kids and their ticky selves, it is these artifacts that remind us that — no matter how badly we’d all like to blend in — someone in our family has TS, and our blending privileges have been suspended — at least for now. We are never short on reminders that our kids have TS — to the contrary, we are excruciatingly aware that this disorder is ours, to live with, overcome, research, treat and cure.
Perhaps for this reason, I originally deleted from my inbox the notice for the first annual statewide Tourette Syndrome Awareness Day. It will be at a Somerset Patriots Game on Sunday, April 29, at TD Bank Ballpark in Bridgewater, N.J., and while I was grateful to NJCTS for getting this amazing event on the calendar, after several years of unrelenting TS symptoms with my son, what I felt I needed was to be a little LESS aware of TS for a day.
I changed my mind after my son, frustrated by a barrage of tics, launched a football — whizzing it past my friend’s head and nailing the screen door, which jolted with the smack of metal. After my profuse apology, my friend asked, feigning curiosity, “Now, does he get punished for these things?”
I’m not angry with her for asking the question, just as I’m getting better at not getting angry when in public we’re met with stares and looks loaded with judgment because he’s yelled a curse or thrown himself down in the street.
I realize now that Tourette Syndrome Awareness Day is not about buying four tickets so my typically stressed-out family can enjoy a baseball game and my son has an opportunity to feel there are others like him and many supporting him — admittedly both wonderful benefits.
The real importance of this day comes from filling the stands with as many of our relatives, friends, community members and colleagues as we possibly can, increasing our circle of understanding and surrounding ourselves with people who will support us and our children.
By getting the official Tourette Syndrome Awareness Day flyer out on Facebook or Twitter, and posting it in your school, church or temple bulletin board, you can increase the chances that those who come into contact with our kids are educated about TS — or at the very least, forgiving when we’re late and didn’t call because our cell phone was broken or we had to dislodge the screen door bent off its track by a football.
The other real benefit comes from the funds raised from ticket sales that go 100 percent to NJCTS, the group that thankfully NEVER gets pouty, tired or bitter as I was, wanting to take a day OFF from TS awareness. They have done more than anyone to promote understanding, education and advocacy for our kids and community members with TS.
So my family and I will be attending Tourette Syndrome Awareness Day, promoting the event heavily, and are challenging all members of our TS family to do the same. We really hope to see you there!!!
Read more about Tourette Syndrome Awareness Day with these releases from NJCTS:
- Local families note importance of supporting Tourette Syndrome Awareness Day
- Tourette Syndrome Awareness Day will be centerpiece of weeklong advocacy campaign
- Somerset Patriots to host first annual statewide Tourette Syndrome Awareness Day for NJCTS
I just want to support you from L.A.. It’s not easy dealing with this day in and day out. I am rooting for you and your boy and everyone.