1st Insecurities with Tourette's Syndrome

I've posted these 2 pictures above so you can see Thumper normally, and then when he does his facial/nose scrunching tic.  See, it isn't a big deal, but it does scrunch up his little face, and sometimes he'll even get stuck for a few seconds and unable to relax his face.  

Thumper has always been a pretty outgoing kid.  He is an awesome piano player, and has always loved performing in front of anyone who will listen.  He's played in all sorts of competitions, concerts, recitals, in church, and talent shows, and he's never had a problem.  But then all of the sudden, here comes this new thing of Tourette's.  Suddenly things are different.  Suddenly Thumper has become insecure about being in front of people.  

I suppose it is my fault somewhat.  It is how I first noticed his tics.  He was in a school choir and he was in a local ballet Nutcracker performance and while all the other kids were singing or acting or whatever, their facial expressions matched what they were doing, while Thumper's facial expression was just like that of above with the scrunchy face.  He was scrunching his face up over and over and over, and it is when I first became concerned that something was different.  

So now, school had started for Thumper and he was to be in the 4th grade.  It was time to sign up for the school choir that he had always loved being in before, but all of the sudden he didn't want to be in it.  He kept telling me no, but I knew something wasn't right.  He had always enjoyed it in years past.  Why would he all of the sudden not want to do it?  

He finally told me one afternoon.
"I don't want to be in it because of my tics.  I don't like to be in front of people."  

It hurt my heart to hear this.  I told him he was fine and that nobody would notice his tics and no one would hear his gulping or throat noises because they would all be singing.  In return he said, "No, you will see my tics because that is how you saw all my tics last year."  

I felt bad.  Maybe I shouldn't have used this example so much when I had been describing to doctors when I first noticed his tics.  But I'm his mom.  Of course I'm going to notice--I'm staring at him the whole time.  This is what I told him somewhat.  I said it wasn't a big deal and the only reason I noticed is because I was watching him the whole time.  No one else was going to be staring at him.  And anyway, it didn't matter, because it wasn't a big deal.  Didn't he like the choir?  Didn't he like being a part of it?  Wasn't his best friend going to be in it?

It wasn't just this, but I was beginning to notice many other things that Thumper was shying away from.  While he still loved to play the piano in front of others, now his gulping, swallowing and throat clicking noises were starting to affect  wanting to perform.  He would still play, but he refused to announce his pieces, or cried about how he didn't want to talk to announce a song in a video or how he didn't want to have to say anything to anyone before or after he played.  He said specifically, "I don't like to talk in front of people."  And I know it was because of his vocal tics.  Whenever he went to talk, it would always precede with a loud gulp or swallow.  

I felt so bad for him.  He was always so outgoing before, and now all of the sudden he was so insecure.  He was turning into this shy, afraid little boy who didn't want to put himself out in front of anyone anymore.  

Well, maybe I was a mean mom, but I believed in tough love.  I told him, you are going to be in the choir.  It will be fine, just do it.  And when he didn't want to announce his pieces at a piano recital he didn't have a choice.  Having Tourette's doesn't change anything.  He could still do the same things he did before.  It didn't matter what anyone thought.  (Although secretly I began worrying if it would matter someday what people thought of him making these faces of sounds when it came down to an audition or job interview, but I was trying to be positive and think of the present.)  

So, I signed him up for choir, and he loved it.  I did talk with the choir leaders and asked if they wouldn't mind giving him some extra compliments that he "looked good up there" or something rather so he would feel more happy with himself.  He did great, and the choir performance came and nobody noticed or said a thing about his tics.  It didn't matter, and he had fun.  

I knew this wouldn't be the end of our battles with Tourette's.  Hopefully we could take each day a step at a time and build up Thumper's self esteem so he could always feel good about himself.  

The Waxing and Waning of Tourette Syndrome

Doctors had told us that Tourette's Syndrome had kind of a "waxing and waning" effect with tics.  This meant that maybe one day Thumper's tics could be pretty mild, but then another day they could be going wild.  We soon found this out the hard way.  

We took a trip to Arizona to visit family and Thumper was pretty calm most of the time.  He was still gulping and scrunching sometimes, but our family didn't notice it at all.  One thing about Thumper though, is that he is so hyper and running around all the time or screeching or whatever that most people don't notice any of his tics.  It is only in more quiet settings or when you are close by that you would hear his tics or see his facial tics.  But anyway, our trip was pretty mellow, and Thumper was doing fine.  He didn't complain once about his throat or nose hurting because of tics.  

Well, that changed when we got home.  It was a month before school was to start for the fall and all of the sudden Thumper was going crazy.  His tics went haywire and he was out of control.  He was gulping and swallowing and clearing his throat and scrunching up his face like crazy.  

And then there came a new vocal tic.  

This one was somewhat creepy to me.  It was this weird clicking sort of noise or more of a regurgitating type of noise that he would do in his throat.  It reminded me of the way a frog would blow up their throat and make that little croaking noise or something.  In turn, we called this the froggy tic.  It kind of grossed me out.  He started doing this over and over.  Well, it would go gulp, clear throat, froggy tic, or sometimes just froggy tic over and over or gulping over and over, but soon Thumper wasn't just doing it occasionally, he had lost control.  

I remember sitting down with our family to watch a movie late one night and having to turn the volume up louder so we could hear the movie over his tics.  You would think that watching a movie would relax him and he wouldn't be ticking so much, but it seemed to make it worse.  He was gulping and clicking like crazy and it was really difficult to watch the movie with all of it.  It makes me feel bad to think such a thing, but really it was kind of annoying.  Nobody wanted to sit by him.  Poor kid.  

Still his ticking got worse.  At night he was freaking out.  We would go in his room and he was almost causing himself to hyperventilate.  He was ticking so much that he almost couldn't breath.  He was crying as he couldn't stop gulping and swallowing and throat clicking and he just wanted it to stop.  This is when Thumper began telling us that he wanted medicine to make it stop.  He said it hurt so much and he just couldn't stop it.  

Then, what do you do?  Just last week we thought he was doing fine, and now all of the sudden he was in so much pain and so sad.  We had tried the whole "alternative behavior therapy" stuff  (I'll refrain from saying "crap"), that didn't do anything, but we we didn't want to go to medication.  We had read such awful things about it.  But here was our son so sad and freaking out.  We needed to do something.  So the next morning I began looking into finding a new doctor for a second opinion of how to help Thumper.