I Have Tourette's But Tourette's Doesn't Have Me

Prologue (a post this long deserves one!):  I don't usually talk about this a lot, because I don't want it to be something that defines Zac.  Don't misunderstand me, I don't mind talking about it, because it doesn't bother me to talk about it, but if people don't notice, then I am not going to bring it up with them unless there is a reason that might make them knowing necessary.  I feel sometimes that giving labels to kids makes people treat them differently, especially when it's a label that says "this kid is not like other kids" in some way.  The label makes people uncomfortable with the kid so they either become hyper-sensitive or pretend like they don't notice at all.  I'm not trying to be difficult, I realize that one way or the other is the way people are trying to be sensitive to the situation or cope with the information themselves.  It doesn't make me mad or even irritated, I realize that is just how people are, but that is why I don't mention it much, so the label isn't there at all and no one has to be uncomfortable.  The only people who seem to really know how to act are those that have a kid who also has also been "labeled" by something or they are a person who really knows the kid, or wants to get to know them, and then, as the kid becomes a real, valuable person in their eyes, the labels don't matter.  Fortunately I am the parent of a kid who has a label that is pretty subtle, but there are plenty of parents out there who must mention the label and deal with the awkwardness that follows because it's obvious.  Anyhow, there are few readers of this blog anymore (Mom, I think, sometimes Adam, and Jen, who never gives up checking, even if I haven't posted for awhile :)...and then there are those who don't have a choice because I email the posts to them...buahahahahaha!); those that read it I think are mostly aware and adore Zac, so I thought I would be safe in getting this recorded for our own history.

And now we begin....

We first noticed something amiss the summer when Zac was five, before starting kindergarten.  I will never forget that day.  It was one of those days where, in an instant, you experience something that you are sure made your heart stop beating for a full minute, you had a rush of adrenaline that moved from your heart out to the tips of your fingers and you know something is really wrong, that your life was about to change in some significant way.

We were outside in the backyard of our new house in Everett.  It was Father's Day, and both families were there to celebrate the dads, Adam, Dan and Stan.  It was one of those glorious June-in-Seattle days--one of the best-kept secrets of "rainy" Washington weather.  That's when I noticed it.  Zac, our sweet, happy, laid-back, best-big-brother-ever Zac, was doing something extremely odd with his face, like he was making a silly face at something, but to the extreme, and I could tell he had no idea he was doing it.  That was my heart-stopping moment.  I quietly tapped Adam's shoulder to point it out to him and asked if he was seeing what I was seeing.  I needed to make sure I wasn't going crazy.  I wasn't.  He noticed it too.  I grabbed our camera and took a short video clip and then we just watched and waited for a bit.  After about an hour he seemed to stop.

I called the pediatrician's office at exactly 8:00am the next morning, opening time, to get the first available appointment for Zac.  The doctor did his best to reassure us, but we left the office with an appointment for an MRI of Zac's brain, and there is little reassurance in that.  By the end of the week, and a stellar session for a 5-year-old in the "rocket ship to Mars" a.k.a. the MRI machine, we knew that Zac didn't have a tumor, there was a lot of reassurance in that.  We were then referred to a neurologist, Dr. Valcek, at the Children's Hospital of Seattle.

We waited a long, impatient two weeks to see the pediatric neurologist.  But the appointment was quick.  It was quickly very clear to Dr. Valcek that Zac had an "unspecified tic disorder" (meaning there was no real reason/solution for his tics, and it was too early to tell if he had Tourette's).  Treatment, which isn't always very helpful anyway and can have adverse side effects, was not really necessary for someone with Zac's minor tics.  We were all fine with that.  Zac didn't care at all.  There was a chance the tics could get worse, there was a chance they'd stay the same, and there was a chance they could go away.  The time we were most likely to see changes would be in early adolescence.  That was about it.  We were to return for check-ups every 6 months.

We talked to Zac a lot in those early months, about how everyone has something that makes them unique, and his tic one of those things for him.  We helped him come up with some good responses for friends (or bullies) who might ask him about it and really did our best to help him be comfortable with the fact that it was just a part of who he was and we thought he was fantastic.  Thankfully Zac is and has always been a kid who is comfortable with who he is.  He is not out to please others.  He does want to have friends and be included, but he wants the good kind of friends, not the ones who don't like you for the right reasons.  He knows he is loved deeply at home and can always find safety and comfort here.

We did go back to one re-check with Dr. Valcek, but then we moved.  There didn't seem to be a huge urgency to get Zac in for a re-check over the years we've lived here.  Zac's wasn't too bothered by his tics and very few people noticed them; the tics weren't going away, but they weren't getting worse and time just passed....

Zac's tics are mild.  Every year I've mentioned his "unspecified tic disorder" to his teachers, just so they don't think he's being rude in class if a tic pops up and they happen to notice it, and every year at October conferences his teachers say that they are glad I mentioned it, but they may not have even noticed the tics if I hadn't done so.  He only had one teacher that seemed uncomfortable with them, but mostly it was because I don't think she knew what she was supposed to do with the information so she was a little hyper-vigilant.  Friends I've talked to about the tics, usually only friends who I've known and who have known Zac for a long time, are always surprised to hear he has them, never having noticed them before.  They are pretty unnoticeable unless you are looking for them, but once you know he has them, they are hard to not notice.  Few classmates have ever asked him about them or pointed them out.

Zac's tic is transient.  He has two that come and go, and usually he doesn't do them at the same time.  One is a small, brief hum in the back of his throat, it's quiet and we can usually only hear it when the room is quiet, like when we are watching a movie (or in a classroom where kids are working, which is why I make sure to mention it to teachers).  The other is a shoulder shrug/head bob.  He hasn't had the facial tic since the first day we noticed them.

Zac's tic fluctuates in intensity.  His vocal tic doesn't get louder or change, but his physical tic does.  Sometimes he barely has it at all, like it's almost gone and we don't notice it.  Other times it is bigger, more frequent and more obvious, although still small enough that someone else might not notice it.  Usually they are bigger when Zac is stressed, like during busy phases in our calendar year, or when he's in relax mode, like watching the TV.  We also notice it more when he hasn't been getting good sleep.  When they are bigger, they can bug him enough that it takes him longer to fall asleep.

A few months ago I decided it was time to see a neurologist again.  Zac will quickly be entering early puberty, and the other neurologist told us that this could be a time when we see changes.  I thought it would be good just to have a specialist here who knew Zac and his case, just in case...of what, I don't know...but just in case.  This week, after four months of waiting (specialists!  sheesh!), we visited with Dr. Grabert.  He was SO great.  Neurologists, being pretty cerebral guys and gals, can be lacking a bit of bedside manner.  Dr. Valcek, while nice, had a hard time relaying understandable information to us non-medical folk.  Although I should say that Dr. Valcek was amazing at helping Zac realize that the tic was no big deal and just a part of him, not something that should make him feel like a weirdo or a freak.  But we loved Dr. Grabert!  He was a kid/parent-friendly, easy-to-understand doctor with a lot of good information, and also did a great job of making Zac feel totally normal.

Tourette's is a syndrome that is characterized by tics that last more than a year and that have both a physical and phonetic component (meaning a person who has both a bodily and vocal tic).  Because Zac fits this profile, Dr. Grabert gave us the official diagnosis of Tourette's.  This is something I already knewish, given the information we had from the specialist years ago, but I had pushed to the back of my mind.  I think I wanted to ignore that possibility.

When most people think of Tourette's they think of what they've seen in movies or on TV: a person who randomly shouts out expletives.  Fortunately, this is not Zac, in fact, that is a condition suffered by a very, very small percentage of people with Tourette's, and of those that do shout out words, the ones who shout expletives are even a smaller portion.  While I am grateful that Zac does not fall into that percentage, he still shares a commonality with the kids who do and it makes the mama bear come out in me: these are just a normal kids who have a challenge to deal with, everyone has something they've got to deal with, theirs is just out in the open for everyone to see; they want to be liked for who they are; they want people to know they are just like everyone else inside, their feelings and emotions are the same; they are valuable and matter and Tourette's does not define them.  

The bigger concerns with Tourette's are the companion conditions that many people with Tourette's also have: Autism, Attention Deficit Hyperactivity Disorder and Obsessive Compulsive Disorder.  Zac doesn't have any of these.  He does have a hard time sitting still in school, but it doesn't affect his work, his attention is not affected.  He is a great and very intelligent student, and most of his teachers, when he just needs to stand up and shift around a little, have simply allowed him to sit at a desk in the back, where standing up won't bother anyone.  A friend of mine this week suggested giving him a bungee cord that he can string from one side of his desk to the other so he can bounce his feet on it.  I like it!  But even with his fidgety nature, ultimately Zac does not have any of the companion conditions.  We actually joked that we would love it if he were a little more OCD about turning off lights, checking locks or washing his hands (some of the most common OCD behaviors seen in kids Zac's age). 

Dr. Grabert told us with the mild nature of Zac's tics and this lack of companion disorders his prognosis is very good.  Tics appear around 5-years-old and seem to peak between 10 and 12, and Zac is on his way to 12 and his tics have not become worse over the years since his diagnosis, and more significantly not in the past couple of years.  Twenty-five percent of people will outgrow their tics in their teens, 50% will remain that same and 25% can get worse, but Dr. Grabert's feeling is that Zac will not fall into that 25% who get worse because we'd already be seeing signs of that now, an increase in symptoms.  For Zac's sake, that was a relief.  They are not a big deal now, so if he falls into the 50%, who cares?  If they go away, fantastic.  If they get worse, it would be a hard road to walk for him, and no parent wants to see their child have to struggle in a world that is difficult enough without a big, obvious disability.  Although, I know he could handle it with class, and we will always be here to help him pick himself up and cheer him on.

I thought it would be hard to hear that the diagnosis was officially Tourette's, but it hasn't been hard at all.  It doesn't change anything about what Zac has to deal with, who he is, or the nature of his tics.  It's just a word.  They are what they are with or without the label.  And it's nice to give Zac's condition a name, just to make explaining easier, although I will have to clarify that he will not be shouting out random bad words all the time to ignorant people.  It has also opened up a lot of researching over the past few days that has really helped me understand better how Zac is feeling inside, what the tics feel like and how the tics make him feel.  I've attached a little clip from a documentary done by HBO of some incredibly brave kids talking about having Tourette's.  The title of the documentary is "I Have Tourette's But Tourette's Doesn't Have Me" hence the title of the post.  I haven't seen the whole thing because we don't have HBO and I can't seem to find a way to get the movie anywhere that is going to cost me less than $60.  But when I watched the clip with Zac and one of the kids talks about what it feels like to try not to tic, Zac gave a little chuckle and said, "That is SO true."  I felt enlightened but also awful.  We've asked him to try to control them before, especially when we are watching a movie together.  Geez, Mom!  But it's good to be learning.   
 
Bottom line, Zac is amazing.  It astounds me that he is so comfortable with himself; I know few adults who are as comfortable with and confident in who they are as he is.  I hope he can always stay that way.  He said he's had a few kids notice the tic and a handful have asked him about it, like, "What are you doing Zac?" and he just he just tells them, "I just have a little tic, it's just part of who I am and it's no big deal."  My boy is awesome.