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.

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.  

B-I-N-G-O!

Tonight was Bingo at the kids' school and another startling reminder of how different my kid is from just one year ago.

I'm on the PTC, so I have to "work" a lot of the events that the school puts on, which means that Bailey and Gerry often hang out with their friends while there.  Bailey, my little social butterfly, LOVES that she can come and go (within the school grounds, obviously) as she pleases without me breathing down her neck.  As long as she checks in with me here and there, we're good.  Gerry, on the other hand, is pretty opposite.  If I let him sit with me the entire time, he'd happily do it.  I often have to convince him to go find his friends or try an activity these days, and Bingo was no exception.

While all the kids were running around and meeting up with their friends in the beginning, Gerry sat himself at the very first table (closest to me).  He didn't want anything to eat or drink and was perfectly content to sit and let a friend come to him.  Several times I looked over at him to find him twitching away, head turning this way and that while his eye scrunched up.  Every once in awhile he shrieked out his goat noise.  His cheeks stayed bright red most of the night, whether from embarrassment or just overstimulation I don't know.  The more crowded the cafeteria got, the more he ticked.  He calmed down a bit when I sat by him to play the game, but was still noticeably twitchy all night.

When Bingo was over and the cafeteria had cleared out to just a few parents and kids cleaning up, he let loose a bit.  He ran around the cafeteria, shrieking like a goat (God, I hope this goat tic doesn't last long).  Our close friends know about his diagnosis but people who don't know him or us gave us a few looks.  I don't think Gerry notices the looks he gets a lot of the time, and I'm thankful for that.  I don't miss a single one, and I often find myself torn between ignoring the looks from people who don't know better and attempting to educate them and let them know that he's got a disorder and is not just a "bad" kid.  I don't know which would be less embarrassing for him.

A bright spot from the night: Bailey won Bingo pretty early on in the night.  Gerry came close so many times, but never won, and he didn't handle it very well.  Bailey was super sweet and offered up her prize to him.

The Tics Go To School

Ugh.

It finally happened.  Someone at school noticed and commented on Gerry's tics, and he came home all upset about it.

I've asked his teach numerous times, and she always says that his tics aren't noticeable in the classroom until it's time to go home in the afternoon (which doesn't surprise me, because Gerry has always worried that something will go wrong in the afternoon and he'll be stuck at school and won't make it home).  I pack his lunch everyday, all of his favorite foods.  But when I empty his lunch box in the afternoon there's never more than two bites out of his sandwich and maybe a few bites of fruit missing.  Every time I ask about it, he just says "I didn't have time to eat."  All these weeks, I've just assumed that he's been too busy talking during lunch to actually eat it.

Turns out, he's been too busy ticking to eat.

Poor kid's been holding it all in so well in the classroom that he "lets it go" a bit in the noisy lunchroom.  Which would be totally fine, except that his newest vocal tic is a bit...a lot...annoying.  And very noticeable.  Have you ever seen those YouTube videos with the goats that scream?  "Meeehhhh!  Maahhhh!"  Over and over again.  THAT'S the newest tic.  And he has no volume control with it, it is always done loudly and repeatedly until the "urge" leaves his body.  His quite literally cannot stop himself from doing it.  He can't do it quietly, he can't do it just once.

Now, I've heard this particular tic.  In fact, the first couple times before I realized it was a tic and not him being a jerk I yelled at him to knock it off.  It's loud, it's annoying, it's completely inappropriate in most social situations.  Unfortunately, it's also the one he can't suppress in the cafeteria.

So.  He sits there day after day making this crazy-ass noise while the other kids are trying to eat their lunch.  And today one of those kids followed him into the bathroom at lunch and told him that he's annoying and that his friend wants to kill him (Gerry).

When he came home and told me, I almost said "Tell me this kid's name and I'll deal with the little asshole".  But another part of me was like, "You know what?  That's a super pain in the ass sound to have to listen to at lunch time and I kind of get kids being annoyed enough to tell him about it."  They're kids.  They don't know that this is something he can't control and that he's not actually trying to ruin their lunch.  They don't know any better.  And that's my fault.

I sat Gerry down that afternoon and talked to him a bit more about TS and what this means for him.  Up to this point, I don't think we'd ever really sat him (or Bailey and Lincoln) down and said Ok, here's what's going on and here's what we're all going to do about it.  So we talked.  I told him that it's ok to stand up for himself and to tell people "I do this because I have Tourette Syndrome and I can't help it."  People aren't going to understand.  They're going to be annoyed and even angered by him and his tics.  But the more he talks about it and normalizes it, the more (I'm hoping) other people will be accepting of it and of him.  As he gets older, we can explain in more grown-up terms about his tics but for now I just want him to be able to say "I have TS and I can't help it."  Bailey, too.  I know it sometimes embarrasses her, but I also know that when push comes to shove she'll stand up for her brother and she won't let people pick on him.  She's much stronger than he is in social situations, and I'm so thankful to have her there for him at school.

The bathroom incident is only the first of many similar incidents that I'm sure Gerry will deal with throughout his school career.  Better to teach him to advocate for himself now so that it becomes second nature to him down the road.