Thursday, January 15, 2015

Tourettes... How do you deal? Etiquette, etc.

So I have talked a lot about how my family deals with Tourette, but I was thinking back to the first time I went to our Tourette Group Meeting. How scared I was. What I was afraid of seeing and hearing. I was really worried about etiquette, etc.
The first group meeting I went to I left Baby Mermaid home, I didn't know if it was an adult only meeting,  more for care givers, or for kids also. At this point we had been diagnosed a little bit less than a month. I am thankful every day for this experience. I showed up a bit late, I didn't want to sit around and make small talk. As I walked into the room, I first noticed that there were no children there. Three adults sat it a circle, along with a fourth teenager. I thought to my self, good I can ask these people who have kids with Tourette all my questions and get all the answers I need. As I sat down it became very clear to me that adults have Tourette and still tic. Everything you read says that kids grow out of tics as they reach adulthood. The fact of the matter is that is not always true. I am sitting there thinking to myself crap, everything I have read has been a lie...which is still kind of true.  So as they introduced themselves to me, these strangers that have now become my good friends, my heroes, and my confidants, They all started ticing. I thought to myself, crap, crap, crap, do I advert my eyes, do I stare at them, do I talk over the top of the vocal tics, do I pause, pretend like everything is normal!!! I was so afraid. Even as I type this I cry, the fear was so real. I was so scared for my cute little Baby Mermaids future. How can I expect her to live a normal life with this non-normal problem?

As the meeting continued and the conversation focused on me and my needs. I learned a lot. These amazing people. Were normal. They had jobs, family, school, lives, just as I would want my darling girl to have. Some had served Missions for our church, at home and abroad. I finally figured it out as the meeting came to a close, the teen tossed his pencil at one of the other people in the circle, she just bent down and gave it back, he made a joke about that being a not great tic and at least she hadn't been stabbed. she laughed. and it was done. I thought to myself duh Heather, of course that's how you deal with tics. You treat someone with Tourette the same as you treat anyone else, with love.

So a couple of quick tips on meeting someone with tics.
If its a loud vocal tic, its O.K. to pause conversation for a second. That way everyone can listen to the conversation.

I find kids very curious about tics, I would much rather them be able to ask questions than have parents shush them. You know me I'm all about education. Also as a parent, don't make up answers, Lots of times kids will ask parents how did they catch that? and parents make up some crazy thing. I would much rather be able to explain that its something you inherit from your parents just like your blue eyes or your brown hair.

I was worried about eye contact at first, if you are talking to someone, looking them in the face, and they tic, it kind of feels like you are staring at them. Then I thought about that more, if I'm having a conversation with anyone, I give them the courtesy of looking them in the eye to show them I care about what they are saying, and so I can listen to what they say.

Its never polite to copy what people say and do.. Its never polite to copy someones tics.

Just seems like common sense now. So if you read this and learned something new, let me know. If you read this and thought, Gee Heather is a moron, you can feel free to leave that message also (however it is not very polite)

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