A couple of days ago I got to spend some time with a lot of Tourette’s kids. (Note, this is the most common way to spell Tourette’s–I’m seeing a lot of ‘terrets’ out there recently)
Seeing tics in childrenand Tourettes in children is not easy for me, especially when I can tell it bothers them. Tuesday evening I was at the third annual Tourette’s Syndrome Association of Utah’s family picnic. I had no idea it was even happening.
A couple of days earlier, I got an email from Utah’s TSA chapter head. She asked if I could come to the picnic and talk a little bit about my history with Tourette’s Syndrome.
I used to go to support group meetings with a low turnout. And most of the people who came to meetings did not have tics, but were concerned parents. So I expected the picnic to be a few people sitting around. I’ve never been so happy to be wrong.
There were between 50 and 70 people there for most of the night (yes, I counted, no I couldn’t help it). There were a lot of kids there, but I wasn’t the only adult with Tourette’s. There was a man who was an absolutely incredible glass blower. Very cool.
When it was my turn to speak I got up and told them the Tourette’s (oh, I’ve also seen “terets” recently) story that you’ve seen here if you are a regular reader. I’m never sure quite what I’m going to say or how it’s going to be taken.
Last night I was glad the kids were there, because while I talked, I realized I was talking to them. Kids with tics are in a rough spot because it makes an awkward age even more so. It’s hard to be strong when you don’t understand what is happening to you and you don’t have the tools to express it yet.
While I talked, I realized that I never, never would have taken the advice I was giving when I was younger. Hindsight is a luxury, that’s for sure.
I closed while talking about the success I have had in not having tics, and invited anyone who had questions about my methods to talk to me later or get in touch with me through the blog.
Talking with parents
Later when we were all mingling, something fascinating happened. Several parents came and asked questions. But not one of them asked how I was controlling my own tics, which was what I was expecting. Instead, they each asked if I would be willing to speak with their children about how to deal with the tics.
One woman said, “I just want my daughter [13 years old] to know it’s okay. I want her to see that it’s okay to have it.”
I think there are a couple of things happening here. The lack of response about controlling the tics may have something to do with the fact that most of us (I included myself up until the past year) have largely given up on the idea that there might actually be a motor tic remedy that works. In the non-pill sense.
And the second thing is something I now empathize with as a parent. The next best thing to eliminating your child’s challenges is to make sure that comfort will be available during the bad days.
This is one of the greatest challenges of dealing with Tourette’s–nobody else can actually help because nobody else is in your body and brain. Support groups can mean very little if the child with Tourette’s feels lonely, like nobody understands.
The parents will always do the best they can. The really dark days come when the child is not willing or able to do the best that they can. I always say that attitude is a choice, but I don’t really think that’s absolutely true when a child is suffering.
Yes, there were times when I could have made better choices, but I really do believe that we do the best we can with what we have at any given moment. If you are one of the parents who spoke with me at the picnic, don’t lose heart. I know, how trite does that sound? Accept that you will be discouraged and frustrated at times. It sucks, it isn’t fair, but it’s probably not going to change today.
And if you are one of those children who helped me fill out my bingo sheet…don’t give up, don’t give in, and make yourself smile whenever you can. If any bullies bother you, call me. My headlock is at your service. I have been where you are at and I made it out.
And please, if you think I can actually help with anything, or if you are dealing with Tourette’s and reading this from anywhere else in the world, please take me up on my offer.
I am at your service, as long as you think I can actually offer you something worthwhile.
Hang in there.
PS: by the time you read this, I’ll be in Yellowstone riding bears. See you all later next week, I’ll be offline.
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