Thursday, April 28, 2011

In the Parking Lot at Church

That's where Little Bit and I spent our time last night during Bible study. Part way into class she came over to me and whispered that she needed to scream. So we went outside where she could.

These vocal tics are new to us. To be diagnosed with Tourette Syndrome, you must have motor tics and at least one vocal tic for a year. When she was diagnosed she probably only had one vocal tic---clearing her throat.

But this is something else entirely. She says words over and over again (oy-uh, cup, etc.) and then there is the screaming. So she screamed and said her words and we did all sorts of things to keep ourselves occupied in the parking lot. S came out to check on us and gave Little Bit a hug. She kept saying, "Sorry Mommy. Sorry you can't go to Bible class." She even told me I could go in and she would stay outside. I made sure she knew that it was no problem for me to sit with her outside.

I know if you have never dealt with TS you might be thinking, "Really?" Because I know it sounds so weird. You HAVE to? That doesn't even make sense! Just close your mouth and don't do it! You are in control of your body!

I know. I've thought the same thing. It's strange. But here is how Little Bit explained it to me. There is this tic she always "needs" to do that is physically impossible. It has to do with her knees. She told me the tic tells her to do it, and it travels down her body to her legs. Or, she said, if it's a "hand tic", it travels down her arm to her hand. I told her that makes sense if the tics come from her brain and the brain sends messages to the body. She agreed.

Then I told her she should write a book about Tourette's. She was very excited about that! She had many questions. She wants it published. Well OK then.

And last night I started researching ways to help with these vocal tics and stumbled on more information about vitamins and diet and supplements than my brain could even take in. Yikes. It'll be worse than learning about diabetes. But I know we can clean up our diet more and I will try that for sure. Even though we highly suspect the reason the tics have been bad this week has to do with Grandpa being in the hospital for 6 days.

The real thing we must do and do right now, is learn to cope with them. They are here. We still must live. So after a while in the parking lot, Little Bit told me she needed to visit the restroom. Just before we went in I said, "OK--one more time." and she screamed. Then we went in. She immediately clapped her hand over her mouth and walked to the restroom. When we were washing our hands though, she couldn't hold it in any longer (it's like when you need to sneeze). So I slapped a paper towel over her mouth and said, "Not too loud, OK?" And she screamed into the paper towel. Worked great. She took the paper towel from me and said, "Let me just keep that."

I noticed after church she was playing with her friends and their baby sister in the cry room and she would put the paper towel over her mouth and scream quietly ever so often. Awesome. And then on the way into the hospital to visit Grandpa she asked if the hospital would be a good place to do her tics or not. But it didn't matter. She climbed up into Grandpa's lap and they started to melt away. All was right.

And I guess now I will begin my research on cleaning up our diet. I may want to scream myself before I'm through.

9 comments:

  1. Brenda... I have no words. I do know that I am thankful that she has a mom like you who understands (as much as you are able), who think, prays, researches, study's etc. So many moms simply stick their children on meds or are irritated or don't take the time to understand what is happenening in thier childs body. You are a wonderful mom!

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  2. I agree with everything Carrie said. Wonderful, indeed. ((hugs))

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  3. What a fabulous mama you are. So glad you openly share the tough, and sometimes seemingly strange stuff on here; you have set the standard of grace and understanding that all parents need to develop; tics or not, many of us can learn patience & perseverence through your example of parenting. To 'listen' to our children is a gift we can always give them... keep on keeping on Brenda, you rock! ;^)
    ~Sheri

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  4. Praising God your daughter is home with you rather than institutionalized in school.

    Can't wait to see her book on a rack at Barnes and Noble!

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  5. My first thought was the same as Q's: What a HUGE blessing she is home with you.

    Brenda, your loving kindness to Little Bit is a witness to me. Thank you; your post was a gentle reminder.

    Still praying for your dad. :)

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  6. Hey! Dad got to come home!!!! Finally!!! :) Thank you so much for the prayers.

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  7. You are a wonderful Mother who shows so much patience. I just bet she will write a book to!

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  8. I think that being able to be open with you is such a big deal. I know with my son's tics he needs to do them without negative criticism/comment. When he tries to repress them for whatever reason they always escalate along with his anxiety. One silver lining about the tics.....they are always changing...so if there is one that is driving me crazy I know it will eventually wane.

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  9. love the godly example you are to other moms!
    this life is so short...even though it doesn't feel it at times. i can't wait for our kids to be running around in heaven. with NO TICS!!
    praying. xo

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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! :)