10 Months Later

I haven’t updated this in almost a year, and what a year it’s been.  I’m not sure where to even start, so forgive me if this is a jumbled mess of a post.

First things first, we’ve spent this past year in the middle of a pandemic.  Everything shut down, schools closed, and a stay home order was put in place. A quick trip to the store turned strategic as we made a list of what we needed (so we didn’t take any more time in the store than absolutely necessary), made sure we had hand sanitizer and masks and gloves. Gerry hasn’t seen the inside of a classroom since March 12, 2020.  It’s been a time.  

The whole focus of this blog is Tourette Syndrome and our experience with it, so I won’t go into lockdown specifics, etc. but a lot has happened with Gerry’s TS in the last 10 months.  There were some things added to his official diagnosis so now it’s "Tourette Syndrome with ADHD (combined presentation), mild OCD and anxiety, and mild to moderate ODD."  It’s a lot.  A lot.  

TS has a ton of comorbid conditions, so I figured we’d encounter one at some point, but I wasn’t prepared for all that he has.  We put off medication for quite some time, but started him on small doses as symptoms got worse.  He’s currently taking medication for ADHD, which is great in terms of keeping him focused and on task at school (check out the difference in his work when he’s taking meds vs not taking them) but is not so great for the Tourette’s.

These photos were taken just days apart

The ADHD medication is working really well, except that it’s a stimulant...which means it makes his tics worse.  So we added another medication to help lessen the tics a bit, which isn’t doing much right now.  And then, of course, there’s yet another medication to calm tics and help his sleep at night.  He’s handling it all in stride and is an absolute warrior.

As for the Tourette Syndrome...he’s struggling.  His motor tics have eased up a bit, but he’s got a vocal tic now that is really bothersome.  He hums mid sentence.  It can last anywhere from a few seconds to a few minutes and he’s unable to speak when he’s doing it.  His OCD requires him to speak in one full sentence, so if he starts saying something and his tic interferes, he’ll start back at the beginning when the tic ends.  This repeats over and over again all day long.  It’s very noticeable, embarrassing and frustrating for Gerry.  He’s gotten angry when tics got in the way before and he’s gotten annoyed, but this is the one tic that makes him sad.  He’s also told me that he’s scared that this one won’t go away.  I’ve done my best to reassure him and to remind him that his other tics have come and gone and the humming will too, but truthfully I’m not sure about this one.  It’s definitely his longest lasting.  I still have a few of the same tics that I’ve had since I was a kid, so this could quite possibly stick with him and that scares me, too.  

He’s such a sweet boy, but these diagnoses get in the way so often.  It’s hard for other people to see my sweet, good Gerry beyond all the ticking and negative behaviors.  I often wonder what he would be like if he didn’t have any/all of these issues.  BUT...that’s a post for another time.