Problems at School; When You Can't Hide Tourette's

It was nearing Halloween, and normally this is a very exciting and fun time of year, but not for Thumper.  All of the sudden he was very stressed.  He began coming home from school worried and upset because some kid had asked him why he was making those gulping and swallowing noises and if he could stop doing that.  

Now, we had been going to these Tourette's meetings, and he was becoming a little more open about his Tourette's, so we've been telling him that he can just tell the kids he has it, but I don't think it is so easy for him. I asked him what he said to the boy and Thumper said he didn't say anything.  He said he was too scared to say anything and that the boy seemed really annoyed and mad at him because of all the noise Thumper was making during quiet work time.  

Thumper told me it was hard at school because his throat tics were really bad sometimes and everyone could hear him during group time where they all sit close to each other.  He said he didn't want to tell his classmates that he had TS.  He just felt bad.  

One thing that annoyed me to death, was the way their classroom was set up.  Now, I've seen a lot of different classroom desk arrangements, but the way it was set up in Thumper's classroom was a little odd, and something that is a nightmare to anyone with Tourette's.  The desks were in 2 long rows, but with each row consisting of 10 desks all facing each other and touching on all sides.  So if this makes sense, Thumper had to sit in the middle of a row of desks but with a desk in front of him with another student facing right at him, and then desks touching his desk on all sides.  So basically, 5 other students desks touched his desk and 5 other students are all right within a foot and 1/2 space of him.  How awful to have to have some kid staring directly at you the entire class time, but with Tourette's, there is no where to hide.  

I sent an email to the teacher explaining the situation and how Thumper felt uncomfortable.  I asked her if she could change the seating arrangement so the desks didn't all have to be touching each other and facing each other, but I don't think she quite understood.  Later that week, Thumper told me they had rearranged the seating, but it wasn't like I had hoped.  Instead of changing the desks or moving them apart from each other, the teacher had moved Thumper to the far back one of the rows where his desk was next to 2 special needs students who weren't there very often, and another student who missed a lot of school.  So, now he was just isolated in the back of the classroom like some sort of outcast.  OK, so I'm exaggerating a little bit, but it just didn't seem right.  Now don't get me wrong here, Thumper had a very nice, caring, and respectful teacher, but I think Tourette's was new to her, and she was trying to make things easier for Thumper.  It just wasn't what I expected.  

So, maybe this had helped Thumper not have to be so close to the other kids during quiet work times when he was ticking a lot, but it still bugged me a little bit thinking how he was all alone in the back.  It was a matter of visualization.  When I actually went in the classroom, he wasn't so isolated as I had pictured.  

Another interesting thing was happening at school.  Thumper started coming home telling me that some other kids had Tourette's too.  I asked him about this, and he told me how there were other kids he played with or in his class who kept clearing their throat and gulping all the time now when they were by him.  Hmmm....this made me wonder.  It sounded more like these kids were copying Thumper.  At least he didn't pick up on it, but he still was feeling bad in class.

Thumper would come home from school and tell me that another kid asked him if he could "stop doing that" or why did he keep "making those sounds".  Thumper told me he felt bad and he just tried harder and harder to not make those sounds, but it was really hard and it hurt him.  And, from what we have learned, trying to suppress tics usually just makes them worse.  

Poor kid.  What was this doing for him?  I think this is where people don't understand Tourette's.  It's not just the tics and that they are bothersome or annoying to others.  It's also all the distractions and loss of focus or concentration that comes from doing them.  How difficult it must be for a child to try to concentrate or work in a classroom setting when they also have tics happening, and now they also have to worry about trying to not tic so much as to not bother the other students?  

Things were getting worse for Thumper and he was not happy at school.  He was coming home ticking worse than ever and his stress level was very high.  Again he was crying and freaking out at night as his tics were so bad.  We didn't know what to do.  We had tried all these therapists and psychologists and psychiatrists, support groups and more.  We still didn't know what we were supposed to be doing to help Thumper.  We knew one thing though.  We knew we had to do something more to help him at school so he wouldn't feel so embarrassed and ashamed.  I began emailing the school psychologist, principal, and Thumper's teacher to see if we could come up with some ideas to help Thumper at school.

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.  

Meeting with the Tourette's Support Group

So confused of what we should do or not do with Thumper and his tics, we looked forward to our first real meeting with our local chapter of the the National Tourette's Syndrome Association.  This could be a chance to really talk to others and ask questions.  

We met on a Tuesday evening and right away it was very interesting to see the majority of these parents with kids with Tourette's all had kids in the 4th grade just like Thumper.  It was a small group that night, but there were 3 sets of parents each with a 4th grader, and then there were some adults with TS as well.  

Here some of the tics were kicking, jerking, coughing, head bobbing, laughing......I kind of felt guilty bringing Thumper there when his tics seemed so mild as compared to some of these other kids.  But it didn't matter.  I guess they were all different but all in the same boat.  

I began asking about this tic reversal therapy and medications.  The group didn't say much about the therapy, but they said sometimes it works to make a more noticeable tic less noticeable.  One of the young adults there with TS said he used to always have to raise his hand up as one of his tics and he didn't like it because people were always calling on him in class.  So he was taught if used an alternative behavior, such as touching his finger to his nose, that it would satisfy the need to do that tic, but it was less noticeable and he wouldn't be called on in class all the time.  This made sense to me.  I guess Thumper's tics were a little different, but true, he had told us himself that sometimes he could touch below his nose in a way that would relieve his nose scrunching and face scrunching tic so he wouldn't have to do it so much.  

When we brought up medication, it was interesting.  A lot of the parents already had their kids on all sorts of medications, but it seemed like these kids had a lot of other issues.  As we continued going to these group meetings, we found out that Tourette Syndrome seemed to be the lease of these kids' problems.  These other kids had ADHD, ADD, anger management issues, behavioral problems, learning disabilities, and more.  So really, they were already on all these drugs.  Some of the adults spoke about trying different medications over the years when they were growing up, but they all spoke negatively about them.  The consensus in the end was that all the medications made them feel out of it or too tired to live their lives.  They said some helped a little but would stop working, or some didn't notice any improvement, but just made them fee out of it.  

So, nice and supportive as this group was, I don't know that they really helped me with the decision on what to do with Thumper.  Well, they did make me feel that medication was not the way to go just yet.  We would have to look into something else to help Thumper.   We went out and bought some melatonin for him to use at night if his tics were acting up at bedtime.  

Tourette Syndrome; To Medicate or Not to Medicate???

We found a psychiatrist who also was a licensed physician's assistant who was new to our pediatrician's office. We thought we could take Thumper in for an evaluation to see what this doctor thought.  Now, we weren't looking to medicate our son, but we thought it would be nice to see if there were any other options out there to help with his tics rather than all this alternative behavior stuff that really didn't do anything except make Thumper obsess about his tics more.  

Thumper had gone through an awful week of ticking uncontrollably and crying every night and complaining about the pain.  With his nose scrunching so often, he was getting a lot of nose bleeds as well.  

Of course, then comes the waxing and waning of Tourette's yet again, and by the time his doctor's appointment came, he was pretty mild with his tics.  

OK, now don't think I'm a crazy mom or anything, but really I wanted Thumper to be ticking a little more crazily.  No, I wish he didn't have to tic at all, but when you are taking a child to the doctor, you don't want them to think you are one of those hypochondriac moms who are making stuff up about their kids.  How could the doctor believe me or see that it was so bad if Thumper wasn't ticking that day?  Or what if he did what he did the last time we went to the pediatrician and tried to hold his tics in?  I had a talk with Thumper and told him that we were going to the new doctor to help him and that he needed to let his tics go so the doctor could see to help him.  I felt kind of bad saying this though.  It was almost like I was telling him he needed to tic.  So contradicting to what we wanted for him!

Anyway, we met with this new doctor who evaluated Thumper.  We filled out all these tests and paperwork while he met with Thumper and then we were allowed in to see what he had to say.  This time it was interesting.  

While before with the doctors and neurologist, they had said it wasn't a big thing and they insisted on going to this behavioral health specialist to work on brain reversal techniques to help control tics.  Before, all we were doing was being put into therapy sessions to help teach other behaviors instead of the tics, or a lot of the time we were just documenting when and why and how long the ticking was occurring.  

But this time the doctor comes right out and starts telling me different kinds of medication that we can give Thumper.  Just like that.  I was really surprised that a doctor would just say, yep, this is how you can fix him with a bunch of drugs.  He is like, well, you have 3 options, 1-you can give him this drug, but it is for major anxiety.......(and I'm thinking, he's not anxious, he's just anxious when he can't stop ticking), or 2-this other drug that is used for high blood pressure and ADHD, but has some effects on lessoning tics, or 3- there are some more herbal medications.  He goes on to explain the drugs, and one is an as-needed drug, but it is pretty much a sedative, so I don't want to give him that to put him to sleep.  The other one he has to "build up to " a full dose, and would have to take it for so long and if he wanted to stop then he would have to be weened off.  

I told the doctor I wasn't looking for some full time drug.  Wasn't there just something that could help him when his tics became uncontrollable that wouldn't knock him out?  When he went through days of little tics, I didn't think he needed to be drugged up.  But no, the doctor said there really weren't any drugs that had been made specifically for Tourette's and that all the medications were for other things just some of them helped with Tourette's.  I did kind of like the idea of the ADHD drug because maybe that would calm Thumper down a bit, but from what I heard, it made the kids really really tired and I didn't want Thumper walking around like a zombie.  I asked more about the herbal solutions.  He said we could give Thumper melatonin at night to help relax him and help him to sleep better.  He suggested that Thumper's tics were worse if he didn't get enough sleep.  Of course, I knew this wasn't true as his tics were sporadic whether or not he had 10 hours of sleep or 6.  

Well, I didn't know what to do.  Yes, I somewhat went into this doctor with the idea of seeing what kind of medicines were out there, but I didn't expect to just get a "Hi, here's a bunch of drugs, try this" approach.  I think I wanted some other options as well.  OK, maybe I didn't know what I wanted.  The therapy bit was just useless to Thumper, yet I didn't want to just drug him up.  What did we want?  What should we do?  I didn't agree to anything and just made a follow up appointment and decided to go home and talk things over.  

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.  

People With Tourette Syndrome Are Just Like You, Only with Tourette's

We looked up the National Tourette Syndrome Society and found they had local state chapters.  We found out there was one close to where we live and looked into when they met.  It was the middle of summer now, and it looked like the next event was a summer picnic, so we planned on attending.

My husband was a little less enthusiastic.  Well, he didn't think it was a bad idea, but it just made him a little nervous going into a big group situation where he didn't know any of the people.  And then there was the question of whether or not we should actually take Thumper or not.  

I mean, yes, he was the one with Tourette's, but there was this fear we had that if he saw other people with Tourette's and they had other kinds of tics that were a little more extreme, then what if he somehow started copying their tics?  OK, yes, that sounds really dumb, but what if?  I mean, what if some other kids is coughing all the time, and instead of his gulping or throat clearing, it turned into coughing because the idea was suggested to him?  Or what if some other kid spit?  Or what about the swearing?  I know I had read it wasn't all that common, but what if?  Thumper's tics weren't a huge deal, but what if somehow he "learned" other tics?  Can you even do that?  

Obviously, we still had a lot to learn, but we decided to take Thumper with us, and had our older son watch our other kids so it was just the 3 of us.  That way, if there was any crazy wildness going on, we wouldn't have all our kids watching.  We didn't know anything, and after all, we had just read that crazy book that had us feeling that people with Tourette's went crazy and tried to kill themselves.

So, here we were arriving at the picnic.  It was a "bring your own dinner" kind of event, so I brought some food and we went to find a place to sit at a group of picnic tables under a pavilion.  We sat and began eating, but really we were looking all around trying to see what these other people with Tourette's were like.  Except we couldn't find them.  

We were looking from family to family waiting to hear the swearing or shouting or hopping or anything, and we didn't see it.  There was just one little girl that seemed to cough an awful lot, and I figured that was a tic, but it wasn't a huge deal.  We walked around looking for signs of people jerking or twitching, but really these were normal people.  Doesn't that sound awful to say!  I am ashamed at myself that I was thinking anything less of people with Tourette Syndrome.  I mean these were just regular ordinary people that had some tics.  

After a while of interacting, I began to notice how one girl would jerk her head to the side or bend when she walked, or how a man would make some different facial grimaces.  They had a few people speak about how Tourette's affected them, and it was interesting.  A young woman spoke and I didn't notice anything out of the ordinary with her.  A young man spoke who cleared his throat over and over just like Thumper.  But you know, these were nice, good people, and having Tourette's didn't change who they were or make me feel they were any less of a person.  

Thumper ran around having a great time.  It was interesting that a boy most of the time so shy in a large crowd was somehow very outgoing in this group.  He played and had fun the whole evening.  We signed up to get more information and emails sent to us for upcoming events.  Apparently, they held monthly support group meetings that we could go to.  So we left that day, but we learned a great deal.  We learned that people with Tourette's aren't like they portray in the movies or on tv.  They aren't crazy, and they aren't a joke.  They are regular people, maybe just with a bit of uniqueness.  They don't pity themselves or each other, but they accept each other and with that have a greater acceptance for all mankind.  

Don't Believe Everything You Read; The Scary Stories of Tourette Syndrome

So, yeah, we were new to this whole Tourette Syndrome diagnosis.  Where could we find more information?  What were we really supposed to be doing?  Were things going to get worse?  Better?  What did other parents do?  We really hadn't found any answers, and we were clueless.

The pediatrician referred us to the neurologist who made the diagnosis who then sent us to a behavior health specialist that didn't really help us.  So here we were wondering what we were supposed to do, or if we were supposed to do anything at all?  

So, where do I go first?  Well, I really hadn't seen anyone with TS before, so I begin searching YouTube for videos of tics or Tourette Syndrome.  Of course, you should never do this, because what I found most was videos making fun of or faking TS, or those that actually did show some kids with tics, it attached it to this super depressing music with all these comments about how it was the end of the world and poor pity pity them.

This was not helping, and even I was still questioning the diagnosis.  I mean, these videos showed different kids ticking, but none of them did the same things as Thumper.  

So, then I go to the library.  I go to several libraries.  I check out every book there is on Tourette Syndrome whether it be a kids book or a nonfiction book.  Of course, you'd be surprised what they have at the library, and the books are somewhat limited.  At least where we live.

So, there are a few little kid books that show a bit more of kids spitting or with OCD problems than just basic TS.  There is a self help book I began reading for a while which basically was one big advertisement of how you should buy this author's many other books to how she overcame several other disorders.  There are many books that mix Tourette's in with other syndromes like Asperger's and ADD and ADHD.  There was a book written by a mom who told about her "HyperActive Tourette Syndrome Child", which I thought might be good, and then there was this really thick book that was supposed to be a true life account of a boy with Tourette Syndrome and how his family handled it.  This is what I all checked out and began reading.  

Well, while some of the books gave a little bit of information, none of them really fit with what we were dealing with.  I mean, Thumper was hyperactive, but the book by the mom of the "HyperActive Tourette Syndrome Child" just seemed a little too much.  I mean she described her son as being completely wild, destroying things and basically being uncontrollable in a classroom or shopping center.  Thumper wasn't like that.  

The thick book written part by a pretty famous author, James Patterson, who wrote with the help of a dad of someone diagnosed with TS seemed like it might be interesting.  It was called Against Medical Advice.  Yes, maybe this would be a good book especially to see what this family did themselves.  So, I begin reading and at first it is amazing to see some of the similarities of things maybe Thumper was thinking or doing, but then it changed.  

It went on describing how things got worse for this boy.  But it wasn't just a little worse.  This boy pretty much went insane from his compulsions and tics and began smoking and drinking and doing drugs non stop, and then his parents sent him to some crazy military camp in the freezing cold where he basically starved and froze, and then he went to some crazy mental institute......

Let me tell you, this book pretty much freaked my husband and me out!  It was crazy!  So, now, what were we to think?  So, our son might be OK now, but pretty soon he was going to go crazy or become so out of control that he'd have to be severely medicated or put in a mental institute?  

Well, this research was not helping.  We decided to look for real life people who could help us.  We looked up the National Tourette's Society and found a local chapter in our state.