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.