Tuesday, June 5, 2012

No one "at fault"

I am sorry that I haven't been able to keep up with the daily blog posts that I started out writing for Tourette Syndrome Awareness Month.  Life has gotten in the way, as it tends to do sometimes.  We've had trips to the pool, birthday parties, and softball tournaments filling up our days since school has gotten out, and there hasn't been much time for me to sit down and write.  I did want to take a little time to write about something that has been weighing on my mind, though.

Tourette Syndrome can be a spontaneous thing, appearing out of nowhere in a patient that has no known family history of Tourette Syndrome.  Sometimes, it can come on with strep infections, in which case it would likely be PANDAS.  In many cases, however, there is a genetic link.  Heredity does seem to play a role in many TS cases.  However, this does not mean that anyone is "at fault" for their child having Tourette Syndrome.

Recently, a relative made a comment about which side of the family was "at fault" for Monster Man's TS.  This came after another relative started showing signs of having TS, as well.  The comment really grated on my nerves.

The truth is, no one is "at fault" for Tourette Syndrome.  There is no one to blame, and there should be no one to blame.  Sure, TS has its ups and downs; but doesn't most of life?!  While it can take some adjusting to, and the comorbids can sometimes be hard to deal with, Tourette Syndrome can also be looked at as a gift.  That's exactly how we choose to look at it.

Thanks to Monster Man's diagnosis, our eyes have been opened to so many things that we never would've known.  We still would've fallen into that trap that the media wants us to believe, that TS is just the "cussing disease".  We wouldn't have come to know that there is so much more to TS, that coprolalia only occurs in a small percentage of cases.  We wouldn't have come to meet so many new families that are experiencing the same daily struggles (and triumphs) that we are experiencing, friends we've made online and through Camp Twitch and Shout.  We wouldn't be challenged to work so hard to fight for acceptance for other children with tics even worse than Monster Man's.

Most importantly, though, is the fact that Monster Man wouldn't be the person that he is without his TS.  He wouldn't be the 'quirky' little boy that we've watched grow up, always teaching us to think outside the box.  He wouldn't be the little boy that taught us to answer every "Why does he do that?" with "Because he's Monster Man" when we had no explanation.  He wouldn't be the boy that taught us that being so different can be so much more fun.

We are blessed to have Monster Man just the way he is, and he feels blessed to have been given the gift of TS to open his world up to a whole new group of people that he wouldn't have known otherwise.  He has told us that he thinks that his highly vivid imagination comes from his brain working differently (something I've heard from other ticcers as well).  We do not feel that there is someone to "blame"; but if there was, we'd like to thank him or her!