I read a book this weekend called Med Head: My Knock Down, Drag Out, Drugged Up Battle with My Brain by James Patterson and Hal Friedman, which is a young adult version of the book "Against Medical Advice" by the same authors.
It's about a young man Corey Friedman who at 5 had the sudden urge to move jerk his head while playing a video game. That simple movement started a life time filled with drugs and misunderstanding. He was diagnosed with Tourrette's and OCD.
I recieved this book from a co-worker who had never heard of Tourette's until I started working there. She read the book by coincidence recently and thought I would like it. I have found that a lot of people don't really know what it is, and what they do know about it is gleaned from TV and movies. I'm suprised how many people assume that Aislinn is mentally challenged or is going to be incapable of living on her own as an adult.
Corey Friedman had Tourette's more severly than Aislinn has it, to the point of breaking his own teeth, flipping people off, and ripping muscles in his body from having to twist and bend in all kinds of ways. He was at one point in a wheelchair because his tics were so severe he was unable to work from having to do them constantly. He was given every drug imaginable and the drugs usually made them worse, yet doctors kept him on them just in case. Finally, in an extreme decision of "Let's do the opposit of what we have been doing becuase it hasn't been working." they took him off his meds and he sent himself to a wilderness camp and got himself straigtened out at a teen.
Almost immediately, I started to tear up reading the book. The onset of his symptoms was so hauntingly familiar. I remember watching Aislinn once jerk her shoulders repeatedly. Aislinn from birth had always been a difficult child, and quite honestly, watching her jerk her shoulders over and over, I assumed she was being difficult and "weird" as usual. I sat there and watched and I finally asked her "What on earth are you doing? Why do you keep doing that?" and she would say "I don't know. I just HAVE to." After a few days, I got irritated and yelled at her to stop to which her response was "Mommy, I just feel like I HAVE to do it." It took me another five years of different "Tics and weirdies" before I took her to the Dr. I still have a tremendous amount of guilt over this.
Reading this book has been such an eye opener and maybe I had been doing my typical head in the sand move by not reading ANY books about it. What a relief it was to me to read that this boy who didn't have the coprolalia version of Tourette's (compulsive cursing, obsenities that is a part of 10% of people with Tourette's) he still sometimes had tics that involved swearing. I hadn't shared it with many people, but Aislinn's worse tic was to say the F word over and over again. She would say I can't FUCKING take this any FUCKING more. I was getting calls from the school, parents were complaining. This lasted a few months, and I can happily report that I haven't heard it in a few weeks. But, it was by far the worst tic to date.
The thing that struck me the most was how wonderful his parents were and even when they were getting spit on by their son, they never seem to lose their temper. I can't say that I am this way. Just yesterday, I yelled at Aislinn in front of people when her obsessive nature took over and she asked me repeatedly if by touching stagnant water she was going to die. My mom got upset with me that I got so loud. I try, but sometimes being asked 5 times in succession about something gets old. Aislinn has always been this way. She can't just take your first, or second, or third answer. Reading that this is normal, this constance need for reassurance, maybe I'll be more patient with it.
What I got from the book is that even if something isn't necessarily a tic, once it's in their heads, they HAVE to do it. I need to be grateful that what Aislinn does isn't necessarily dangerous, just really obnoxious. Once, Corey had the obssesive need to pull on the steering wheel while his mother was driving, causing them to get in an accident. The mother didn't get mad. I get mad when Aislinn can't stop picking her head.