Tuesday, July 24, 2012

I don't see it...

There is one comment that seems to be heard by just about every single one of us that has a child with TS.  At some point or another, quite often within the first few months of diagnosis, it seems like we all hear the words "I don't see it".  While the words may be quite harmless, there are other times when the words can end up being more hurtful.  Often times, it seems those words come at a time when we need the support of our family and friends, and rather than getting that support, we instead hear them casting their doubt.

I think there are a number of factors that can come into play as to whether or not someone "sees it."  Those that only see the child once in a while may just be seeing him at times when tics are waning rather than waxing (at a calm time rather than a time when tics are more out of control).  Another factor can be whether or not the child is comfortable around the person that doesn't see it.  Oftentimes, the child will hold in the tics until they are more comfortable, leading to an overabundance of tics once the child is once again in his comfort zone.  There is also the possibility that those that see the child regularly aren't seeing the tics because they've come to be typical behavior for the child, leading to the tics going unnoticed.

Mothers, on the other hand, are often more tuned in to the things that affect our children.  We have a sense when something is wrong, when there is something more than just habitual behaviors going on.  We tend to have a better understanding that our children need our help to overcome the obstacles that they are facing ahead of them.  Just because you don't see it doesn't mean that we don't see it.  When we do come to that realization, when we accept that our children are different, we need the support of those around us.  We don't want to hear the doubts cast our way.  We don't want to have to explain what or why or how... We just want to know that we can turn to our friends and family for support.  Most importantly, we want to know that you accept our children for who they are, not for who you want them to be.

Friday, July 20, 2012

Adjustment Period

Monster Man has been going through a bit of an adjustment period.  About three weeks ago, he started taking Clonidine to help control some of his tics.  The hope is that by controlling the severity of his tics, we might be able to control some of the excess stress that builds up and leads to a rage episode, resulting in better control of his rage.  We were told that it would take over two weeks before we start seeing results.  So far, we're not sure if the results we're seeing are an improvement or not.  Some of his tics have seemed to decrease, but others seem to have increased.  He also seems a little more 'jumpy'.  His anxiety level is higher, but we're not sure if that is related to the Clonidine or not.

This past Saturday, we left for a camping trip to the mountains.  Sometimes, he seemed much better than he previously would have.  In the past, he's been very nervous going over the mountain roads, afraid he'd fall off.  He didn't seem to have those fears this time.  However, he was jumping a little more at noises he heard; was very sensitive emotionally, sure we were yelling at him if we got onto him even the slightest bit (calmly, even) for misbehaving; and he started ticcing uncontrollably one night while we were out to eat - worse than we've ever seen him tic.  He had gotten upset because he was ticcing a little and noticed someone was watching him.  The stress from being stared at caused him to start ticcing 100 times worse.  I took him outside the restaurant, where I held him in my arms while he cried until he was able to calm down enough to get back in the restaurant and take his anxiety medication (Hydroxyz HCL).  A few minutes later, he was happily drawing again.  Seeing him struggle like that was so hard on both me and my husband.

We haven't seen any further episodes like he had that night, but we're keeping an eye out to see if he has any other signs of worsening.  We're also keeping our eye out for signs of improvement.  We're really hoping that this medication will help improve Monster Man's symptoms.  He'll be heading for some therapy soon, too (I wanted to hold off until we know how the medication is helping him so that we can include that information in what we talk to the next doctor about), and we're hoping we might start seeing more signs of our happy-go-lucky little boy again.