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.

Return of the "woo-oo"

We have come to the point where we don't even notice most of Monster Man's tics anymore.  There is one tic that really sticks out, though.  It had gone away for a while, but it returned earlier this week.  It's his loudest tic, the one that is most noticeable to others.  Sometimes, the tic almost seems like a normal reaction, as it usually happens when he is watching a movie or playing video games and gets excited, but there are other times when he is excited that this tic shows up.

With this particular tic, we've noticed (as I already stated) that it seems to happen when he is excited.  He lets out a loud "Woo-oo".  Doesn't seem like much, but there are times when he is watching something particularly exciting and he keeps repeating it every couple of minutes.  It's fine at home or at hockey games, but wouldn't be fine at a movie theater or another public performance where it would become a distraction to those around us.  It's sad to think that we have to limit him from certain activities like that just so that his tics don't become bothersome since he hasn't learned to control them very well yet.

For now, he's more comfortable in situations where he can be excited and not have to worry.  I guess it will be that way for a while, until this tics disappears again or until he finds a way to control it.

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.

A School Performance

Monster Man was in a performance at school yesterday, and it gave me a chance to realize something I had never noticed before. When he was up on stage, singing with the other students, he didn't have his usual eye blinking or throat clearing (or sniffing) tics. He was actually able to control them up on the stage, which really amazed me with how much he struggles to control them at other times.

He's always been a bit of a goof in front of a crowd. During VBS performances at other churches, Monster Man would be the one child rocking out on air guitar throughout the songs. When other kids are standing still singing, or even just swaying a little, Monster Man is the one that has to dance. Sure enough, while he wasn't tic-ing on stage last night, he was emphasizing words of the song with a swing of his arm or he was tilting his head from side to side to the music. It occurred to me last night that maybe, just maybe, these little antics are his way of controlling the tics. Most importantly, though - They kept a smile on his face!

I was so proud of Monster Man last night, watching him and knowing how hard he was working on the inside to keep his tics under control. Sometimes we take things like that for granted.

His own style

I think Monster Man has a bit of a crush on a girl at school. For Valentine's Day, he decided that he wanted to wear something special. He wanted to be "a little casual, a little dressy". This is the outfit that he came up with to wear to school today. I almost wish that I could've found a little boutineer to complete the outfit!

It's days like this that make me extra proud to be his Mom. I know there are times that he struggles with his anxiety, and he's finally admitted to us that there are kids who tease him about his tics sometimes, but he still remains confident enough to be his own person, to create his own style, and to keep his smile on his face.

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.

A little disappointed/A little relieved

Monster Man apparently didn't qualify for the medical research study we were trying to get him into. Since we went into the screening with mixed emotions, I guess that ended up being a good thing. As parents, we really wanted to get him the help that he needs, but we also didn't want to turn our son into a 'human guinea pig'. We were kind of afraid of what side effects he might experience, and that was our biggest concern with it. Monster Man himself had such mixed emotions. On one hand, he wanted to get rid of the anxiety; on the other hand, he was afraid that he'd lose the tics that help to make him who he is. Of course, the money involved in doing the research (he was going to get some to spend and the rest was going to go into savings for him) had dollar signs in his eyes, making him a little more willing to take part in the study than we were. Once he got through the initial upset of his first blood test, he pointed to the vein on his arm, saying "this is my money maker", and asked when he could go back. I told him he needed to think about it more, just like we did. The decision was made for us, instead, and we never received a call to go in for the first treatment.

Knowing now that he isn't getting called back has given us some mixed feelings, just as the initial screening did. Now, we're a little disappointed that we weren't able to get him the treatment that could possibly have helped him. We're also a little relieved to know that we won't have to turn him into a 'human guinea pig' in order to get the treatment.