Friday, October 10, 2008

Tourette Syndrome

Have I mentioned Graham's tics on here? I can't even think if I've written about it yet. Anyway, Graham has tics. They've been happening for probably a couple years at least, but I think we didn't recognize what was really happening until about a year ago or a little more.

I suspected then that he had Tourette Syndrome, and that I have it too. I read about it a little bit and found out that it's highly genetic. That convinced me even more. I assumed we both have a mild form.

In the last couple months, Graham's tics have been prevalent, both motor (movement) and vocal (unintentional sounds) tics growing worse and more numerous. When his walking became affected by tics I got more motivated to learn about what's going on and whether there's much we can do about it.

So I got on Amazon and found a few books. I first bought Graham Tic Talk: Living with Tourette Syndrome: A 9-Year-Old Boy's Story in His Own Words
He read it and declared it "awesome!". I was actually surprised how much the boy in the book is like Graham and I think Graham was pretty surprised too.

Now I'm reading Children with Tourette Syndrome: A Parents' Guide. I have to admit that I have been a little overwhelmed with all the information. A couple of things have really struck me so far:

1) I always compared my own symptoms and Graham's to people with Tourette that you see on TV - you know, the huge body movements, shouting cuss words kind of thing, and called us "mild". I assumed we had a mild form of Tourette. Well, in a way I guess we do in that I am so thankful that our symptoms aren't super extreme. However, I have learned that our tics are considered complex and that people who have those big noticeable things going on are very rare. So really, in the spectrum of Tourette symptoms, we're not all that mild.

2) I knew Tourette was genetic but I didn't know any statistics about that. Well, it seems that 50% of children of a parent with Tourette will receive that genetic susceptibility to having Tourette symptoms. Of those who have the gene, 99% of boys and 30% of girls will show symptoms. Kids don't show symptoms until ages 6-8, generally. So out of our two kids that age I guess we are pretty statistically correct.

Now, keep in mind that neither of us has had a medical diagnosis. We both 100% meet the criteria so I am assuming but we haven't been diagnosed by a medical professional. I don't know yet if I will take Graham for an official diagnosis.

Alif and I are not really on the same page with this. He definitely agrees that he has Tourette but he simply doesn't understand it. I think a part of him feels like the tics are for attention. I think he thinks it's controllable. He can't relate to the feeling of having tics at all. He just can't grasp the actual need to tic. He doesn't care about understanding it or anything, he just wants to know what to do to make it better, to make Graham happy in spite of it all. I care about those things too, but I have lived with this all my life and I am 34 years old. Suddenly learning so much about it is really opening up the floodgates for me. Of course I want to share with him all that I'm learning, but it's hard to share with him when I feel like he thinks the whole thing isn't quite "real".

Of course he still feels that my afib incident was a mental incident more than a physical one.

In his mind, when something is wrong, you just decide to make it better. I guess he's a good candidate for Positive Thinking.

Anyway, I hope you don't mind if I share this journey with you, because it makes me feel better to talk about it.

7 comments:

  1. Oh Emiles I am so glad you're sharing about it on here- it's huge. I'm so glad you're being proactive about it and talking about it with him. Those books like perfect!

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  2. Clicked on the link to your post on another BlogHer blog, http://flipflopsandapplesauce.blogspot.com, a fun blog. Anyway, one of my good friends has a son who was diagnosed with Tourette Syndrome a couple of years back. She is an awesome Christian mom. She's gone through a whole lot (besides the diagnosis) within the last couple of years, and her blog has become something far wider than a blog about a son with TS. But I think you'd really enjoy her blog, http://lestes65.blogspot.com. If you'd like to read only the posts about TS, here's the link: http://lestes65.blogspot.com/search/label/Tourettes. Hope I'm not overstepping sending this to you, but your post reminded me so much of her. God bless you guys.

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  3. Praying for the journey!

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  4. Looks like lots of good information, daughter. I'm glad you're learning so much about this. There's freedom in knowing the truth about a health condition. Thank you for sharing it here!
    Love you!

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  5. (((emily))) it's great that you're researching this and learning what's going on in graham's world! and it's awesome that you can understand what he's going through, it probably makes it a lot easier for him.

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  6. Wow, Emily, I had no idea you had tics. My cousin David has Tourette's, but because they live in Oregon, I don't really know what that looks like for him. But I did an article on it for the paper a long time ago, and met this wonderful local family whose daughter has Tourette's. She was in high school at the time, in the choir despite the Tourette's, really great kid. One hard thing for them had been sleeping issues because she would wake herself up at night. They went through a lot of different medications trying to help, but I don't know how common or necessary that is.

    I'll pray that as you learn more, Alif will come to understand it better. Sometimes it's nice to have an encourager who believes all things can be overcome. But it can be frustrating to be held to an impossible standard.

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  7. My husband has Tourette's and I think my oldest son does, although his doctor and I have decided not to have him "officially" diagnosed yet. It's such a part of our family that I never really think about it anymore--except when the moon is full and Ray's tics get bad. I'll definitely be getting a copy of that book, I know that D will soon need to read it.(He's 9). Thank you for sharing so honestly about your journey.

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