If you only recently visited my blog then you might not know that our four year old has Tourette Syndrome. She was diagnosed back in February and you can read more about it in my labels section of the sidebar. (If you want.) The reason I haven't blogged about it for a long time is that there has been nothing to report. She had so few tics over the summer that I truly forgot sometimes that she even had TS!
The reasons I began blogging about Little Bit's tics were: 1. I needed to "talk" about it. and 2. To help someone who might be going through the same thing. I read everything I could find on TS on the computer (probably 3 times!) and what I found a lack of was real stories about how it affected real people. The medical information was good. I learned a lot from what I read. But when it really all boiled down, I wanted to know what life was going to look like for us.
Over the spring and summer the only bad tic I can remember was the sniffing. She sniffed everything that came near her, but especially books. Every time I turned a page I had to wait for her to get her face out of the book so I could continue reading. Sniffing wasn't as bad as the licking tic. I thought that one was going to be the end of me.
Now, the tics are beginning to come back. Her current tic is jumping. It started a few weeks ago and the first time I noticed it was at the mall. Every few steps she would just hop a little and then continue walking. S said he had already noticed it once. The thing about this tic is that it really doesn't stand out on a 4 year old. Little kids tend to be kind of jumpy and spastic anyway. If she were 14, it would really look odd. That's the part I dread.
The most interesting part to me is when she explains her tics in her own words. We haven't told her, "You have Tourette Syndrome." We haven't even discussed the tics--we just try to ignore them and be patient. I think of it like a child who stutters--the parents will wait patiently for the child to get the words out and not let it seem like it bothers them. That's just part of their child, you know? I mean, we don't ignore them, but we also don't call attention to them in front of her. One day I suppose we will have a discussion with her about her tics, but I don't think she's aware that it's something unique about her yet.
Oh, but back to her description of the tics. Right after she turned 4 and before she was diagnosed she told me "I need to do it" about one of her tics. I thought that was a pretty telling statement about what was happening to her. This week we were doing something and she was really hopping a lot. Tics tend to get worse when the child is excited or stressed so I asked her, "Are you excited?" (what we were doing was kind of fun) and she said, "No....I just....the bottom of my feet hurt so that's why I have to jump." I said, "Oh, that makes the bottom of your feet feel better?" She said it did. All I can think about this explanation is that they say there is a sensation that comes before the tic. Maybe this is what she was explaining? Even though she also hops when she's on her knees...but oh well.
Also this week was the first time I have ever seen her trying to suppress a tic. She usually seems very unaware of them and hasn't been a bit self-conscious yet to my knowledge. However, this week I was holding a skirt up to her waist to see how long I should make the hem. She started wiggling around a bit and looking funny. Finally she said, "I need to jump." So I moved the skirt away, she hopped 2 or 3 times and then I finished. Having to stand still was really hard for her at that moment because the tics needed to come out. It's strange. It really is.
I'm beginning to suspect that this time of year is just going to be bad for tics. Her birthday, Thanksgiving, Christmas...there's a lot of excitement coming up. Last December was the worst ever, so I think we may have a pattern here.
And about blogging...I've already met a mom online who is going through this same thing with her little boy. So, I'm really glad I decided to share.