Tourettic's Unite

Boy, I wish more people knew/understood this.  

One of the most frustrating parts of the whole Tourette Syndrome "thing" are the symptoms and a person's ability to suppress them.  This entire school year, we've witnessed Gerry ticking away like crazy at home.  But, every time I ask his teacher about it she says that he never does it at school.  This has happened so often that I started to wonder if maybe he didn't really have TS and I was just seeing things and being paranoid.  {Thank God for our amazing neurologist who talks me down and reassures me at every appointment that this is normal and I'm not going crazy or suffering from some form of Munchausen By Proxy}.  

 

I think part of the reason for other people not realizing that Gerry is ticking is because they just don't know that that's what he's doing.  To most people, it looks like he's just making weird faces and/or making silly sounds.  I also think he suppresses his tics to an extent, whether consciously or unconsciously.  In a quiet classroom, for instance, I think he realizes that letting himself tic would draw attention to him and make him look "strange", but in a crowded cafeteria he can let himself go a bit more freely.  I'm able to consciously suppress my own tics in social situations where I feel like I need to (or if it would make someone else uncomfortable or wondering what the hell I was doing), but I definitely don't bother when I'm alone or in a "comfortable" place.  Gerry's tics are incredibly noticeable when he's at home where he feels safe and comfortable.  He doesn't suppress them, he doesn't try to hide them.  And, oh, I know how it good to feels to not hold back.  So, when he comes home from a long day at school and starts going crazy with pent-up energy and noise and movement...I do my best to let him get it out without interference.  Because the relief that comes with "ticking out" around people who you know love you and won't judge you, and doing it in a place where you feel safe enough and comfortable enough to do it?  That's a relief like no other.  

TS Awareness Continues

Continuing with Tourette Syndrome Awareness Month, I posted this on my Facebook page this morning.  

In  Gerry's case, he inherited the condition from me.  Males are also affected 3 to 4 times more than females, so that's two strikes against him right from the get-go.  Back when I was pregnant with him (and, truthfully, right up until he was diagnosed), the thought that I could "pass down" my TS to one or more of my kids had never entered my mind.  I was so used to living with it and my family had never made a big thing of it, that I just never really thought about it.  So much so, that the fact that it can be an inherited condition never occurred to me.  I'm pretty sure his anxiety and OCD tendencies were also passed down from me.

My case is a bit different.  As far as I know, I'm the only one in my family to have it.  Or, at least, to have been formally diagnosed with it.  I don't know the health history on my mom's side, but I'm almost positive that no one on my dad's side has TS.  We spend a lot of time together and in my years I've never noticed anyone ticking or doing anything TS-related.  I have what is called "Sporadic Tourette Syndrome", meaning I didn't inherit it from anyone...there's just a sporadic gene mutation that resulted in my having TS.  Which is kind of neat when you think about it.  

As far as my other kids, I'll be interested to see how it all plays out.  Bailey is almost 10 years old and not displaying any signs or symptoms of TS.  Lincoln just turned 4 and, though I know he's at a higher disadvantage when it comes to inheriting the disorder (being my kid AND a male), he's not showing any signs either at the moment.  It's definitely something I look out for, though, if for no other reason than to make sure I get him the appropriate kinds of help if needed.  

Tourette Syndrome Awareness Month

May 15th to June 15th is Tourette Syndrome Awareness month.  I've been posting a bit on Facebook each day, and thought it might be helpful to post here, too.  This morning, I posted this:

This is Gerry.  I posted last week about starting medication for what the neurologist thinks is ADHD.  He also shows signs of OCD and anxiety.  Still ticking away most days, but those are less worrisome (to me, anyway) than the behavioral/emotional issues.  We're still new to all this, but taking it a day at a time, a tic at a time, a moment at a time.  I don't think we'll ever have a complete handle on TS, either Gerry's or mine, but I'll keep things updated here.  :-)