I have recently started reading "Against Medical Advice" by James Patterson and Hal Friedman. The story centers around Hal Friedman's son, Cory, and his struggles with Tourette Syndrome. Cory's story began at a much younger age than Monster Man's, with his tics becoming noticeable shortly before his 5th birthday. That led the family on a long journey, filled with many medications and even more struggles.
I'm not quite 100 pages in yet (I've only been reading it for two days), but I've already noticed so many parallels between Cory Friedman's experiences and the experiences Monster Man has had thus far. The tics coming on suddenly. The waxing and waning of the tics (getting better, worse, better, worse, and so on). The constant repeating of the word "sorry". Repeating what others say (Monster Man does this on rare occasion). The anxiety that seems to increase the severity of the tics. Even the need to laugh off some of the problems so he's laughing with the other kids instead of them laughing at him. I've already found myself heartbroken at times just realizing what Monster Man is really going through.
I'm really enjoying reading this book. It has given me so much insight into what my son, and others like him, experience on a daily basis. I was told by many on the TSA Facebook page that it is a must-read, and I have to say that I agree with them!
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Showing posts with label books. Show all posts
Showing posts with label books. Show all posts
Monday, March 28, 2011
Monday, February 28, 2011
Monster Man is "weird"
I was driving down the road the other day, when my five-year-old suddenly informed me that Monster Man is "weird". He then went on to tell me that Monster Man does "strange things" and proceeded to explain about many of Monster Man's tics and how Monster Man tends to move his eyes in certain ways when he is talking. I realized then that I'd never really explained to my Little Man about why Monster Man does certain things or about what Tourette Syndrome is.
I tried my best to tell him that Monster Man can't help that he does those things, and that he isn't trying to be strange but that he does them because he has Tourette Syndrome. Of course, being an inquisitive five-year-old, he had questions like "what is Tourette Syndrome?" and "why does he have Tourette Syndrome?". That was when I came to realize that I didn't really know how to explain Tourette Syndrome in a way that a five-year-old could understand. I tried my best, but I don't think that Little Man actually got what I was saying.
Little Man seems to have dropped the subject for now, though I'm sure it won't be long before it comes up again. Thankfully, I had some suggestions from the other members of the National Tourette Syndrome Association Facebook page that I have written down for the next time we have this discussion. One of my favorites involves explaining about the workers in your brain, and that those with TS have extra workers that get tired of waiting their turn to work and they make the body do things the brain doesn't want it to do. I've also found that there are several books available that can help explain it to children.
The next time the questions come up, I now know how to answer them.
I tried my best to tell him that Monster Man can't help that he does those things, and that he isn't trying to be strange but that he does them because he has Tourette Syndrome. Of course, being an inquisitive five-year-old, he had questions like "what is Tourette Syndrome?" and "why does he have Tourette Syndrome?". That was when I came to realize that I didn't really know how to explain Tourette Syndrome in a way that a five-year-old could understand. I tried my best, but I don't think that Little Man actually got what I was saying.
Little Man seems to have dropped the subject for now, though I'm sure it won't be long before it comes up again. Thankfully, I had some suggestions from the other members of the National Tourette Syndrome Association Facebook page that I have written down for the next time we have this discussion. One of my favorites involves explaining about the workers in your brain, and that those with TS have extra workers that get tired of waiting their turn to work and they make the body do things the brain doesn't want it to do. I've also found that there are several books available that can help explain it to children.
The next time the questions come up, I now know how to answer them.
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