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.  

We're Medicating...

It's been a really strange few months.  The Coronavirus pretty much took over the US and we've been in quarantine in one form or another since mid-March.  Overall, it's been pretty wonderful for our family (though, this takes NOTHING away from those suffering or having a hard time).  But it means that the kids have been out of school since March 13th, and they won't be going back this year.  The kids are loving it, but I know going back is going to be hard, especially on Gerry.  They've been doing distance learning, which means that their teachers email lessons every morning and the kids have to complete them from home. Which makes me the teacher.   

Gerry is incredibly smart.  He's in first grade right now and reading at an almost third grade level.  He picks up on new material very quickly and the only issue he has these days is with writing.  He hates to do it, so he fights me tooth and nail on it.  Intelligence aside, I don't think Gerry is thriving with distance learning the way he did in the classroom.  He gets distracted  and frustrated easily, and his tics have been more prevalent during our home school lessons.  His teacher continues to tell me that she's not seeing any ticking or behavior issues at school, but you can't miss it when he's at home.  I reached out to his neurologist and she agrees that he's showing signs of ADHD.  She suggested we start medication since we can really watch and see how it affects him since we're all home together.  Scott and I talked about it and gave the go ahead to start him on Clonidine.

Here's the thing.  Clonidine is the same thing as Catapres, which is what I took for my TS as a teen.  Mine was a patch and I hated it.  It helped my tics some, but I was a zombie.  I slept so hard and so much on that medication that the few years I was on it are still a blur to me.  I would pass out in the middle of the day, at my desk in school...there was literally no stopping it.  I didn't want Gerry to have to deal with that.

His sleep was kind of crappy, too.  He'd take melatonin every night, fall asleep for a few hours, and then be up watching tv at 2-3 in the morning and wouldn't go back to sleep.  Didn't matter how much melatonin we gave him.  It was like his body just didn't require the sleep that the rest of us do.  So his neurologist said that the Clonidine would help with that as well.  We started him on 0.1mg of Clonidine to be taken before bed at night.  After more than a week, we weren't seeing a difference at all in sleep or behavior and his tics were still the same.  Over the course of a month, at the neurologist's recommendation, we switched dosage, time of day taken, and considered switching meds altogether.   Ultimately, his neuro bumped him up to 2 pills (0.2mg) to be taken in the morning.  We tried that for a week before switching back to nighttime.  He was falling asleep for hours at a time during the day.  After he fell asleep at the table in the middle of a school lesson, I emailed the neurologist and told her we were switching back to taking the meds at bedtime.  It's not helping with sleep, really, but he's slightly less distracted and hyperactive during the day, and I'll consider that a win.

He had a rough few days in the beginning because it was the very first time he's ever had to swallow a pill.  But once he got the hang of it there was no stopping him, and he's a total pro now.  I'm not sure how long we'll continue on this path, but it's working for us for now.  

Is He Doing It For Attention?

This weekend, we went out for dinner with family.  I'd been paranoid in the days leading up to it because we were going to a nice restaurant.  I always worry when we take the kids to a nice place (because, kids) but I particularly worry about how Gerry will behave.  Sure enough, he entered awkwardly (even though he's known these people his entire life) and ticced off and on throughout the meal.  His vocal tics are pretty calm when he's focused on something he likes, so as soon as I heard him start making noise I busted out my phone and handed it off to him.

{Side note: I don't feel one ounce of guilt for letting him use my phone in order to feel less anxious or to let the people around us enjoy a semi-peaceful meal, so I'm not even going to entertain anyone's opinions on that aspect of my parenting}

The meal progressed with very, very minimal ticking from Gerry.  His head turning and fidgeting was in full force but his vocal ticks had taken a backseat to whatever game he was playing on my phone and, to an outside observer, there was nothing amiss.  The conversation turned to Gerry's TS diagnosis.  Typically, I don't like to discuss it within ear shot of Gerry.  One, because I don't want him to feel like I'm talking about him or his diagnosis like it's something to be ashamed of and two, because bringing attention to his tics makes them more pronounced.  However, the question of his upcoming CBIT therapy came up and the conversation just took that natural flow.  And, of course, because we were talking about it, Gerry started ticking more.  His goat noise made an appearance, as well as his newest "groaning from deep in the back of his throat" tic.  At that point, when they became more noticeable, someone at the table asked if I'm sure it's "not just attention-seeking behavior".

My first instinct was to be annoyed.  I'm pretty sure that if my kid wanted attention he wouldn't choose to get it by making loud noises and moving his body weirdly.  That simple question made me so angry.  Do they not know how much I've stressed about this dinner the last few days?  Actually, how much I stress about every single social situation these days?  Do they not understand how hard we work to come up with things to distract him when we're out in public so that his tics aren't so noticeable?  Do they not know how embarrassed he gets when he's in public and making animal noises that he can't help?  He's not doing this for attention.

So I was angry on his behalf and I'm pretty sure I just gave a short "No.  It's not for attention".  But then I sat back and really thought about it.  I tried to see Gerry as someone else would, someone who isn't his mother, someone who doesn't also have TS and has put up with decades of people not understanding anything about the condition.  And I went from being angry to being understanding.  The question wasn't asked out of annoyance or as a dig at my kid.  It was a genuine, thoughtful question.  And it's not that person's fault that there isn't much known about TS or that what little information there is out there is mostly unhelpful.  

Tourette tics are not attention-seeking behavior.  They legitimately cannot be helped by a TS person.  Most people with tics will attest to the fact that their tics worsen in certain situations, one of those being when their tics are brought to their attention (like Gerry's were when we talked about it with him sitting right there).  My brother-in-law made a very good point:  bringing up his tics kind of makes them into the "elephant in the room".  Once they are mentioned, it's pretty much all the TS person can focus on.  I'm a 35 year old adult who has been diagnosed for upwards of 25 years and I still have a hard time suppressing my tics when I talk about them, so I can only imagine how difficult it must be for a 6 year old newly diagnosed with the syndrome.  It's like chugging a gallon of water and then trying not to think about how badly you need to pee.  

Another comment was made that "He never does that at my house."   This can mean one of three things.  (1) He's doing it and you just don't notice it or don't know that what he is doing is a tic, (2), he's comfortable/focused/distracted enough in that environment that his tics aren't obviously evident, or (3) he's suppressing his tics when he's there.  

Now, a disclaimer.  Neither of these comments was made in a negative or judgy way, regardless of how I perceived them at the time.  It was family who love us and love Gerry asking legitimate questions and making legitimate observations in order to try and understand his syndrome better.  And there is absolutely nothing wrong with that.  The lack of information out there coupled with the fact that Tourette Syndrome doesn't affect any 2 people in the same way doesn't make it a very easily understood condition.  I welcome questions about it because it shows that the people around us care. I may not love discussing Gerry's particular "journey" in front of him, but I'll never turn down the opportunity to answer questions or to educate another person about it.  And as he gets older, I want him to feel comfortable talking about it to others, as well.  

There's no shame in our tic game.  :-)

Finding the Humor

I've said it before and I'll say it again.

I 100% believe that you have to face challenges with humor and grace.  Otherwise you're going to be miserable and your struggles will only be that much harder.  You need to be able to laugh at yourself.

That being said, holy moly did we have a moment this morning!  Scott and I took the kids to Target today, solely so they could have Pizza Hut pizza and I could get my Starbucks fix and we could all get the hell out of the house for a little bit.  Transitions outside the house seem to trigger tic attacks with Gerry, so before we'd even gotten out of the car he was turning his head from side to side, twitching his face, and sniffling.  We get inside and get everyone situated at a table with their food and drinks.  40 minutes later, we've survived a meal with three kids and we pack up and head back to the car.

And that's when Gerry's goat noise tic comes out.

This particular tic is by far the loudest and most annoying of them all.  He has no volume control with it and he simply cannot just do it once and be done.  TS forces him to do it repeatedly until the "urge" leaves his system.  This can take quite a few minutes, which feels like even longer when you're out in public and it's in full force.

The parking lot is covered, so all sound echoes.  We get two steps outside the doors and Gerry immediately starts with the goat tic.  Loud.  High-pitched.  Dying animal-like.  Scott and I don't stop him.  We don't even acknowledge it because doing so only makes the tics worse.  So Gerry's bleating his way out the door, Scott and I are pretending we can't hear it, and I don't even know what Bailey's thinking but, bless her heart, she doesn't say a word either.  But Lincoln?  Well, Lincoln thinks it's the greatest thing ever. At 3 years old, loud and obnoxious is his jam.

So he starts making the noise with Gerry.

And now we're walking through the Target parking lot with two boys making tortured goat noises at the top of their lungs.  With people around.  Bailey damn near flew to the car and Scott and I did our best to navigate through the parking lot and get the boys inside while not acknowledging the noises and not laughing out loud.  We get all 3 kids inside and buckled, shut their doors, and then make the mistaking of making eye contact with each other over the top of the car.  Cue our embarrassed, snorting laughter.

But it doesn't end there.  Because, once inside the car, the boys are still making the goat noise.  Gerry because he can't help it and Lincoln because he sees his brother doing it so why the hell not?  And that sets off my own tic attack.  I'm in the driver's seat clearing my throat, sniffing, and flicking my fingers like a mental patient and I can't stop laughing about how ridiculous this must all look to an outsider.

We're a mess, you guys.  But we're finding the humor in it all.

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.

How We Got Here

We were so lucky to get a diagnosis so quickly, and so lucky that our doctors took us seriously and took our concerns and history into account.  I've read horror stories about people waiting years for a formal diagnosis.

So how did we get here?

Honestly, I wasn't the first person to notice.  Tourette Syndrome was so far off my radar that I'd never even considered one of my kids having it.  Half the time I forgot that I have it.  My tics are on the milder side and they're so second-nature to me now that I don't pay much attention to them unless someone else is bothered by them.

We take a big family vacation each summer with my extended family.  On day 3 of our vacation this year, my grandmother pulled me aside and whispered, "I noticed Gerry's been scrunching up his face a lot.  You might want to get that checked out."  I didn't think much of it until my mom mentioned a similar thought the next day.  That night, I noticed him really ticking for the very first time.  We were standing in line for a ride on the boardwalk and he was scrunching up his eyes and sniffing.  I took a video of it.  Later on, while we were all going to sleep (the 5 of us share a bedroom on vacation) he kept sniffing and clearing his throat.  And, just like that, it was like a switch had been flipped and my mind was flooded with memories of him doing these things over the past year or so.  All the times we'd yell at him for "winking" at us when we were trying to discipline him...all the times my friend who drives him to school would comment that it was so cute how she'd look in the rearview mirror and he was always winking at her...all those times I was sure he was coming down with a cold because he'd been sniffling so much, only to wake up perfectly fine the next morning.

He'd been ticking this whole time.    

I searched trusty ole Google and, sure enough, one of the first things to pop up in a search of Tourette Syndrome is that it's an inherited condition.  Closely followed by the fact that males are affected 3 to 4 times more than females.  Boom.  Two strikes against him right away.

I watched him and I thought about it for the rest of our vacation and as soon as got home I did my homework.  I emailed his kindergarten teacher to ask if she had noticed any signs of TS in the classroom last year.  I made an appointment with our pediatrician.  And I took video after video after video of him.  We saw the pediatrician less than a week later and he referred us to a pediatric neurologist.  "To be quite honest," he said "Gerry's only the second kid in this practice to have Tourette's.  I'm going to have to do some research."  Three weeks after that, we had a formal diagnosis from the neurologist.  

Being the parent of a child with TS is a completely different ballgame than just being someone with TS.  When it comes to me and my health, I tend to take a more irresponsible, "I don't need to see a doctor unless I'm on my deathbed" approach.  But when it comes to my kids, I want them fixed and I want them fixed yesterday.  Since getting a formal diagnosis back in August, I've done nothing but read and research TS in kids.  The Tourette Association website has had more traffic from me in the last two months than they probably have all year, and my Amazon cart is filled with nothing but  books on parenting the child with TS, TS and the Classroom, and The Special Needs Family.  I can't help but notice every little tick and twitch, and I want to shout at everyone who ever made me feel bad that "Ha!  See?  He's not a bad kid and I'm not a bad parent, he has a neurological condition!"  I know more about IEPs and 504 plans than I ever wanted to, and I'm pretty sure that by now I could teach an entire in-service on TS to schools.

I don't know what's in store for us.  I know that every single person's experience with Tourette's is different so I can't really use my history with it as a guideline or expectation for Gerry.  I know that, having it myself makes me more understanding and empathetic to what he's going through and what's to come.  But knowledge isn't always power and, in this case, I almost wish I didn't know as much firsthand as I do. I think there's going to be a big learning curve for our whole family, but I know we're up for the challenge.