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.
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