I wasn't really all that upset by my 4 year old daughter's diagnosis back in February. At the time of our doctor's visit, she wasn't having any tics at all. In fact, she went for well over a month with almost no problems. Still, the diagnosis stood: Tourette's.
I still feel grateful that what she has is not something that is life-threatening or something that will require lots of treatment. We have the diagnosis. Life goes on. I know I have a lot to be grateful for.
But recently the tics came back. Full force. Oh, it's nothing compared to how she was back in December with all the excitement that month brings, but still. We are learning what situations "set them off." We noticed one day, for example, they were particularly bad after a memorial service at our church. The building was very crowded, much more than on Sunday mornings, and lots of people who knew me and S were talking to her. "Oh, look how much you look like your Mom!" etc. The next week we went to a wedding. As soon as we got in the building and she saw the crowd of people she wanted to be picked up. Then she laid her head on my shoulder. I told her that no one was going to talk to her here because we don't really know anyone. She relaxed. So, crowds + too much unwanted attention= tics get worse.
We were eating at Subway the other day for lunch. It is a very small Subway and the lunch crowd line was right beside our table. The tics were going CRAZY! Her current tic is shaking her head, and it tends to get pretty jerky. I could feel people looking at her. It was honestly the first time I have felt self-conscious about her tics. And I felt terrible about that. SHE doesn't seem to be concerned yet. Why should I be?
And then I was instantly reminded of some friends of ours. The L family's youngest son is autistic. They have lived with this for years. He also doesn't speak, which at the age of 9 makes him stand out a bit more than he probably did when he was younger. What kind of looks have they gotten from people? What comments? How do you deal with this? How many parents have gone before me who have learned to deal with people staring at, glaring at, making comments about (well-meaning or otherwise), or avoiding your child? Your baby? Who you know is completely a wonderful child in spite of the thing that causes the staring.
And then I realized I have no answer if someone did say something to me. Just last night we went to the ER (Little Bit had twisted her ankle, she's fine) and they asked me if she had any medical conditions. Do I say she has Tourette's? Is that a medical condition? Or is it just a neurological concern? Do they need to know? I went ahead and told them because I was thinking if they needed her to stay still for anything, they would need to know about it because the tics make sitting still hard. So I said it, "She has Tourette's." I'm not used to saying that. It sounded weird coming out of my mouth.
The day will come when we have to explain this to her. We will have to bring it up. She will have to learn to answer for this herself.
And I am even more grateful to be homeschooling. Tic away, baby, we're home today! And here, it doesn't matter.