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.  :-)

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.