Haircut Time

Monster Man has been trying to let his hair get a little longer.  He has a certain style in mind, though we're having to come to a compromise on it.  He wants it longer like many of the boys are wearing these days, with his bangs coming slightly over one eye.  I, on the other hand, do not like the way it looks having hair over the eyes and worry about how it would affect both his vision and his eye tics.  I've agreed he can wear it a little longer as long as the bangs are not in front of either of his eyes.

The biggest problem I am having is getting Monster Man to understand that it needs to be trimmed from time to time to make sure he doesn't end up with a mullet or some other crazy hairstyle.  He's afraid that even a trim won't let his hair grow out.  The need to trim his hair has become a bit of a battle, and battles with Monster Man are never easy.

Last night, I gave Angel Baby and Little Man some very much needed haircuts.  Theirs were not trims, but instead were major cuts.  I planned on trimming Monster Man's hair afterward.  When he sat down and I started trimming just a little off the bangs (about 1/4 inch, if even that much).  I knew I had to take it slow, cutting very small amounts at a time since his head shaking tic has been bad again and I didn't want to end up cutting it too short.

I barely got any of it done before I came to the realization that I'm not going to be able to be the one to trim his hair when his head shaking tic is so severe.  Between the need to keep my hands steady and work to keep his hair looking good (especially since I have no training when it comes to cutting hair) and the need to fight back tears watching him struggle so much, it makes cutting his hair almost impossible for me.

I think for now I'll take him to get it trimmed, and try again another time if his head shaking isn't a problem.

The Need to Protect Him

There are times when I feel like there is such a strong need to protect Monster Man.  It seems like there is always something, somewhere that he needs me to protect him from.

The outside world can be such a cruel place, especially with those who don't understand what he is going through.  During the early stages of one of his rage episodes, I overheard someone who was witnessing it state that he was being a brat and that he needed disciplined.  They had no idea what he and I were both dealing with at that particular moment, that his rage was not something that he could easily control, and that disciplining him in any way other than to remove him from the situation and give him time to 'cool down' would only have made the situation worse.

The cruelty of those that make remarks like that are not the only thing he needs protected from, though.  He's recently started having a severe head-shaking tic.  There are times when it is very mild, and there are other times when he shakes his head repeatedly to the point that he makes himself dizzy.  As you can imagine, this means that certain situations are not the best to have him in while his tics are at their worst.  We were at a cookout yesterday, and he was swinging rather high on a swing right near our picnic table.  As he was swinging, he was shaking his head worse than he had all day.  I had images in my head of him getting dizzy and falling from the swing.  Later, we were swimming in the lake where we were having the cookout, and he was still shaking his head rather hard.  I could tell by his expression that he was getting dizzy, but he was refusing to admit it because he didn't want me taking away the fun he was having with his friends in the water. He isn't a very strong swimmer, so I already didn't want him going anywhere where he couldn't touch the ground, and the head shaking made me even more determined to keep him in shallow water.  He was heartbroken that I didn't trust him enough to let him go into deeper water, but I had that need to protect him.

The sad thing is that I know I will not always be there to protect him from things that some people might not see the danger in.  I won't be there to keep him from going headfirst into deeper water, to keep him from getting in over his head in a situation that he might not be able to get himself out of.  And I won't always be there to keep him from being subjected to the cruel comments and stares of people who don't understand the challenges he faces on a daily basis.  I will eventually have to allow him to protect himself and to know how to handle these situations.

His Worst Day Yet

Yesterday was Monster Man's worst TS day so far.  We were at the softball fields all day, as we had three games to play between the kids.  By the time I took him to the house of a friend that was watching him for part of the afternoon, he'd had three rough episodes of rage, and he'd developed two new tics.  His painful tic was back in full-force, which I think added to the rage he was experiencing.  While on the field for his game, I noticed he'd started a new head-shaking tic.  He was shaking his head, very similar to shaking it no, very hard.  He did this multiple times throughout the day.  On the way to our friend's house, he told me that he'd started a tooth-grinding tic, as well.  He was grinding his teeth in a way that wasn't noisy, but it was with enough force that it was painful.

He did pretty well at our friend's house, though all three tics continued to be a problem until he went to bed.  After we picked the kids up, we went back to the ball fields to watch the adults play and to let the kids play on the playground.  He had one more episode of rage during that time, and then another when we got home and it was time for the kids to go to bed.

By the time that bedtime came around last night, we were all ready for him to get to bed.  He needed to rest his brain and the rest of us needed to get away from the rage.  I also needed to get a chance to get away from seeing him struggle so much.  It's so hard to see him going through all of this.

Thankfully, today has been better than yesterday.  He's still having the same tics, but he hasn't had any problems with rage today at all.

Wax and Wan

Just as is characteristic of the tics associated with Tourette Syndrome, Monster Man's painful tic has wanned for now.  Tics seem to go through a wax and wan cycle.  They come, they go.  Some reappear.  Some stay gone.  We are hoping that this is one that will not make a reappearance.

Monster Man has had a number of tics that have stayed gone for quite some time after they've disappeared.  Some of them have been gone for so long that we are hopeful that they are gone permanently.  These all tend to be the more complex ones, too, like the painful tic or the 'take three steps and kick myself in the back of the leg' tic.

In place of the painful tic, Monster Man seems to have developed a head shaking tic.  He doesn't shake it all the time.  Instead, it's a sudden big shake, similar to a female tossing her hair over her shoulders in beach scenes in movies.  It involves a good portion of his upper body, from about his chest up, twisting to the side as he shakes his head like this.  I have seen this one before, about three or four months ago, and it lasted about a week last time.  It will be interesting to see how long it will stick around this time.