Sunday, May 10, 2009

Tics and All

That's how we love Little Bit. I thought I'd give a little update on her Tourette's since I haven't talked about it in a long time.

Shortly after we watched the movie "Front of the Class", I e-mailed Brad Cohen and thanked him for sharing his story. I mentioned in my e-mail that we really hadn't talked to our just-turned-five daughter about her Tourette's as she really didn't seem all that aware of the tics.

Well, he wrote me back! I was so happy to see an e-mail from him. He encouraged me to talk to her about her tics and said she more than likely was aware of them and needed to know why she was doing what she was doing. At first I kind of doubted that, but then I thought, "hey, he's the one with TS, not me!"

So one day while we were sitting on the couch I said to Little Bit, "You've got a lot of tics today." (she did!)

"What's tics?" she asked.

"Tics are like when you (I demonstrated several of hers). They are little movements or noises you make because your body needs to."

"Oh."

I told her she had Tourette Syndrome and that's why she had tics. After that conversation she began talking to me about her tics and using the word "tics" in everyday conversation. Sweetheart has absent-mindedly told her to "shh" during a TV show before and Little Bit let her know, "I have a TIC!" Well OK then Miss Sassy Britches.

A few days ago Sweetheart asked me, "Mom, how many tics does Little Bit have?" I said, "I don't know, why don't you ask her?" (Little Bit was grinning while she listened to this.)

She proceeded to demonstrate every single one she could think of. I recognized most all of them, but she threw a few in there that I have never seen. I did find it interesting she only demonstrated the motor tics. I said, "You also have the (demonstrated a noise she makes) tic." Oh yeah! That set her off to demonstrating all her vocal tics.

So, Brad Cohen was right. And he gives good advice.

The tics have not frustrated her in a long time. She has cried at night before because she couldn't stop ticcing and get to sleep, but thankfully that hasn't happened lately. I won't say the tics aren't frustrating, though. I've been pretty impressed so far how easy they are to ignore but right now she has a tic of gulping. Really loudly. I have to bite my lip to keep from saying, "Stop that!!!" That one is not my favorite.

I'm not complaining because some tics are painful. I can stand to listen to a minor tic like that.

I did want to say one thing. Many children have Transient Tic Disorder in which they will demonstrate a tic or 2 for a while and then it will go away. Sweetheart did this a few months ago and we got on to her all the time. I had forgotten about TTD at the time and just thought, "she has this bad habit." After all, SHE'S not the one with TS!! I guess we should have been more patient with that, as it has now gone away completely. If you think hard, you might be able to remember some little tic you or one of your children have done at one time or another. It doesn't mean TS. The criteria for a TS diagnosis is both motor and at least one vocal tic for a period of 12 months. As many tics as Little Bit has....and knowing her case is really not all THAT bad....I'm thinking you will know if you are seeing TS or not. She probably demonstrated 20 tics the other day.

I'm still interested to see how TS will affect our schoolwork next year when Little Bit starts Kindergarten. Brad Cohen calls his TS his "constant companion." It's so true. I expect to make room for the tics in our classroom next year.

I gotta clean out in there. We may need more room! :)

5 comments:

  1. Well, Little Bit is a very aware little girl and very mature about her tics, huh?

    And how cool is it that Brad Cohen emailed back?! :)

    Loved the update, Brenda! Thanks for sharing!

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  2. Little Bit is so smart ! Glad you took Brad's advise and talked with her about it. Have you found any resources on homeschooling Little Bit with TS?

    Hope you have a productive day and remember to drink your water and be healthy : )

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  3. GIONVANNA!!!!! I just poured myself a DP!!!!

    But, I had water with my breakfast. And tea all day yesterday. :)

    I haven't really found anything about that. I suspect it won't be a big deal in homeschool--no disruption to "others" and no teasing or uncomfortable stares here. Since she mainly tics when she's nervous or stressed, they probably won't be that bad here at home.

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  4. Wow. What a great thing for this person to respond to your family. I saw the movie and it was a wonderful story. I am glad that your discussion with your little one was a positive experience. Laura

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  5. i really enjoyed reading this, and it was very helpful to me. i think i still have your email, i might send you a personal email with some questions. thanks for sharing :)

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