Saturday, October 18, 2008

Hello Tourette's--We Have Not Missed You

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.


  1. I love how you are so patient with her about it. That tells so much about how great of a mom you are! I especially thought it was cool that you just moved the skirt away so she could jump and then whe she was finished you went right back to measuring her, like it was nothing...very cool. She's lucky to have you. God has a plan for the two of you somewhere with this. I hope you are able to reveal it in it's right time!

  2. Brenda, I think I've told you before that our oldest, Noah, stutters. In reading this post, I was so amazed at the similarities of tics and a stutter. You're right, stuttering isn't pointed out in front of the child. Now that Noah is older (6) and keenly aware of his stutter and that not everyone talks that way (not to mention the therapy he has had to help with it), we talk about it more with him.

    Also, his stutter is so much worse around Christmas time too. The added stress and excitement seems to bring it all out. It's particularly bad now since the recent unexpected death of his grammie. It's amazing what life circumstances will do.

    My heart goes out to you and your husband. It will become second nature to you, but your problem will be watching how uncomfortable it makes others. You are in my thoughts and prayers. If you ever want to talk, I do understand!

  3. I have not read this article, but saw a link for it and thought of you. It may be good, it may not. Just thought I would share.

  4. and i am so glad you blogged!! thank you so much, i have already been so encouraged!! ry's tics have not been that bad the last few days...but like you said, i remember last december is when i really started noticing it the most. i am trying to claim the verse "whatsoever things are TRUE...think on these things" i tend to be so afraid of what might happen in the future. i am praying for you tonight!!

  5. Sounds like you are doing great! A great website for talking to other people with TS or with kids with TS is


I don't get to talk to a lot of actual grown-ups during the day, so your comments make me really happy! :)