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.  

Our CBIT Experience

At the recommendation of our neurologist, Scott and I met with a CBIT therapist last night.  The goal of Comprehensive Behavioral Therapy for Tics (CBIT) is, in a nutshell, to train patients with tics to do a competing behavior when they feel the urge to tic.  Most of what I've read online and in my facebook groups says that CBIT is difficult for some patients, especially young kids like Gerry, but that there is some success with it...for some people with tics.  The biggest "focus" of CBIT is on displaying the competing behavior when you feel the need to tic.  However, most young kids don't have or recognize the premonitory urge that comes before their tics and, therefore, won't recognize when one is coming on.  Which kind of negates the entire point of CBIT.

The therapist was very clear and upfront about the fact that she didn't think CBIT was the right approach for Gerry at this time (because he's so young), but she does think that some form of behavioral therapy is a good idea for him.  He's been bullied a few times in school because of the noises he makes and both the neurologist and the therapist are in agreement that he needs the tools to be able to (a) recognize when he's being bullied and that it is wrong, (b) tell the person that he's not making noises to annoy them but because his brain makes him do it, and (c) tell a teacher or adult when the bullying occurs.  None of which he's done successfully so far.

So here we are.

When we entered her office, the therapist asked us to tell her a bit about Gerry.  How old he is, what he's like at home and at school, his personality; basically, anything we wanted to tell her about him.  I let Scott take the lead on this one, partly because I was legitimately curious as to how he would describe Gerry to a stranger and partly because I knew I could talk the entire session about my kid and I didn't think anyone would appreciate that.  So Scott talks about Gerry being sweet and creative and crazy and I interject here and there, mentioning that I'm concerned that he's been displaying some ADHD behaviors at home.

{sidenote: I also mentioned this concern to the neurologist but, because he's displaying this behavior at home only and not (to our knowledge) at school too, there's not a whole lot anyone can/will do as far as an official diagnosis for it}

The therapist confirmed that Gerry seems to be exhibiting ADHD behaviors (at home), which was both unsurprising and also a relief to have confirmed by a professional.  It's a known fact that Tourette Syndrome goes hand in hand with a lot of other conditions, ADHD, OCD, and anxiety being the most common comorbid conditions.

So.  We talked a bit more about what we wanted for Gerry going forward.  Because his tics aren't hurting himself or others and they're not super disruptive to his life, we don't want to medicate him right now.  We want to give him the tools and the knowledge to understand his condition and to be able to explain to others if and when it becomes more noticeable to them, and the therapist made a great point in that it's important for us as a family to be able to understand it better and kind of learn how to navigate the different symptoms and behaviors that arise because of it.  A lot of the behaviors that we're seeing at home, to an outsider, could be viewed as Gerry being "bad" or an instigator or just generally a pain in the ass.  In reality, some of it is just him being a 6 year old boy...but a lot of his behavior is directly related to his TS.  The therapist continued talking about Gerry's behaviors and then she said:

    "Some kids just come into this world with challenges.  They're not any better or worse than "easy kids".  But being the parent of a challenging child is really hard, and a lot of people think it's because of the parents.  It's not.  And it's important that you understand that.  His challenges are not a reflection of you as a parent."

You guys.  I started crying.  Right there in the middle of the office.  Like, crying to the point that I couldn't talk.  Because, until she put a voice to it, I hadn't realized how badly I needed to hear someone say that.  Being the parent of a challenging child is hard.  It is so fucking hard.  And exhausting.  And humbling.  And so many people in my life have made me feel like his challenging behaviors are a direct result of how I parent him.  I can't tell you how many times I've heard some variation of "A good smack in the ass would nip that right in the bud" or "He's lucky I'm not his parent because I'd have smacked his butt by now" or "Give me three days with him, I'll send him back to you a new kid".

He is not a bad kid.  And I don't want a "new" kid.

He is sweet and funny and creative and smart and thoughtful and polite, and I wish that the whole world got to see him the way that I do.  He's not bad.  He has a syndrome and, as a result of that, he has some behaviors that are annoying and impulsive.  He makes bad choices sometimes.  A lot of times.  But he's not bad.  And I'm not a bad (or lazy or pushover) parent because I can't and don't force him to bend to my will.  Truthfully, Lincoln's not an easy kid either.  But I'm so done letting other people make me feel guilty because my kids aren't quiet and easy and always well-behaved.  And I'm so damn thankful for the therapist who helped me realize that this is okay.

So, CBIT may not necessarily be the right approach for us right now, but we're definitely going to stay on for the behavioral therapy aspect, and maybe we'll give CBIT a try down the road.  In any case, there's a certain feeling of freedom that comes with packing away some of the "mom guilt" in all of this.  And, believe me, there's a lot...but that's a post for another time. :-)

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.