Changing my own focus

One of the mothers on the National Tourette Syndrome Association's Facebook page posted a link last night to a blog post she had written on Giving up vs. Letting up.  She originally wrote the article almost a year ago, but I think she shared it with us at the perfect time.

Lately, I've had a lot of concern over about Monster Man and the issues he has had alongside the Tourette Syndrome.  Most of the time, we don't notice his tics anymore.  However, we can't help but notice his anxiety, the recent problems with lying, and the fact that he's been so easily distracted the past few days.  It's hard not to notice the anger he has been quick to express on more than one occasion.  Some days, it has seemed like my little boy has been slipping away from me, and it's been easy to want to search for any possible way to bring him back to me.

I've mentioned before that Monster Man has told me that he doesn't want any medication to take away his TS.  Instead, he's told me that God gave him TS to make him special.  He likes his tics because they are part of what makes him who he is.

The article reminded me that the TS is just a part of who Monster Man is.  He is so much more first.  I just have to stay focused on the comic, the artist, the softball player, the wanna be Nascar driver, the hockey fan, the intelligent student, ...

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.

Front of the Class

I have been very interested in seeing the movie Front of the Class ever since we first started suspecting that Monster Man has Tourette Syndrome.  I have yet to be able to see it, but I have been told that it is a very heartwarming story about the true struggles faced by Brad Cohen.  Instead of letting his tics control him and hold him back, Brad Cohen decided to go the direct opposite route and become the teacher that he wished he'd had as a student struggling to control his tics.  I've been told by many both within the National Tourette Syndrome Association's Facebook page and by contacts I know outside of the TSA that this is an inspiring story and a must-see for those affected by Tourette Syndrome.

We do not have cable television, so we seem to miss the movie every time that it is shown.  We have not been lucky enough to find it available to rent, either.  I am finally going to break down and purchase a copy on DVD.  That way, we can use it to educate others about TS as well as to enjoy the movie ourselves.

The importance of sturdy shoes

I am pretty sure that I've mentioned in the past that Monster Man went through three pairs of flip flops last summer due to one of his tics, where he'd drag the toes under his foot and end up breaking the flip flops. He also manages to put a lot of holes in his socks, something that I hadn't realized until recently was also attributed to his tics.

Monster Man has a number of tics involving his feet. I discovered today, thanks to the National Tourette Syndrome Association's Facebook page, that tics involving feet are very common. So many people commented on how their own tics or the tics of their children have resulted in the need for one of two things. 1) Cheap shoes (why pay a lot of money for shoes that will need to be quickly replaced?) OR 2) Sturdy shoes.

We've gone both routes for Monster Man. The last time I bought him a really cheap pair of sneakers, he managed to put holes in the leather near the toes in just a matter of weeks. His next pair of sneakers was the skateboarding shoes that are so popular right now. They have extra thick soles, strong sueded leather, and thick stitching, and they are made to take some abuse. I bought that pair for Monster Man right before he returned to school last August. They are still holding up strong, though they have gotten pretty dirty and nasty over time. For the sole purpose of allowing him to have a nicer pair to wear for church or other places he should wear nicer shoes, I recently bought him a second pair of skateboarding shoes.

When it comes to feet tics for those with Tourette Syndrome, having a sturdy pair of shoes is of great importance.

The Advantages of Tourettes?!

I know that I mentioned previously that I felt that no one was to blame for Monster Man having Tourette Syndrome, and that I actually felt like he was chosen by God to have it. Instead of feeling that it is a burden, I feel that it is part of what makes Monster Man who he is, that makes him have such a detailed imagination that he can put himself into other characters (like Santa Claus) and not only think about that character as a whole, but go into detail about what being that character entails. The same imagination that let him become Santa is the same attention to detail that allows him to draw out his future race car. His imagination comes alive not only in play but also in his drawings and in his writing. Perhaps the amount of detail he puts into everything stems directly from his TS.

Why do I say that? If you read Jonah Lehrer's article on The Advantages of Tourette Syndrome, you will read that studies are showing that those with TS are more precise in detail, making fewer errors on challenges in eye-movement experiments and more accurately timing the length of time in which objects appear on a screen, than their peers without TS. Perhaps there is an advantage to TS, after all. It doesn't hinder those with TS, making it impossible to reach their goals. Instead, it makes them better at what they do. It adds to their talents. It, as I've said before, makes them who they are.

I've spent a lot of time on the National Tourette Syndrome Association Facebook Page recently, and I have found that many of the members there feel the same way. While the challenges that go along with TS really stink, they can still see the gift that they were given.