Wednesday, June 15, 2011

Breaking the news

Perrin is 7, and along with Tourette's he also has OCD, SPD, ADHD, a mood disorder, an auditory processing disorder, and a learning disability. That's quite a bit for a child to deal with, so you can imagine how excrutiating a task it is to break this news to a child who really has no other interest in his life but to turn into a Transformer and watch "Ant Bully" on a continuous loop.
The discussion really began about a month ago when John and I were talking about our own tics one day, and Perrin casually asked, "What is Tourette's?" Simple question with a not so simple answer. John, being the rock star that he is, answered that it was this thing that some people have that makes their body do things we really don't want it to do. That was satisfactory at the moment, but when Perrin's teachers told me that some of the kids were asking why Perrin was sniffing and jumping at school, we realized that it was time to inform Perrin of his condition so that he can advocate for himself. Knowledge is power, and I want Perrin to have as much power over his own life as possible.
I checked out a book from the library that I felt described TS at a level that he could understand but that also didn't make it out to be this earth-shattering, debilitating disorder that a lot of media likes to portray it to be. The main character is even portrayed as having a good sense of humor about some of his tics, just as we do. After reading the book, I looked at Perrin and told him "Just like Nathan in the book, you have Tourette Syndrome, but Dad and I have it too, and it's just something that we have to live with. Sometimes we'll have a lot of tics, and sometimes we won't." I told him that when he snorts or punches his fists or jumps, that those were all tics. I tried to present it in a matter of fact, almost nonchalant way so that he didn't think it was dire or horrid. His response was, "I don't have Tourette Syndrome." He then got up and walked away from me. I admit my heart sank a little bit, because at that very moment I felt like I had taken something away from him. I had destroyed the image that he had that he was normal, just like everybody else. It was like I was hanging a bright neon light over his head that would flash "I am different!" for the rest of his life. Sometimes self-awareness is just shitty. I don't know where we'll go from here. I know he listened, and I know he gets it. I know denial is a natural part of the process of accepting what we are, but I hope that someday he'll feel comfortable talking with John and me about his tics and not hate us for passing this little genetic gem onto him. Only time will tell.

Tuesday, June 14, 2011

The Family That Tics Together Stays Together

My husband, son, and I all have Tourette Syndrome. We are quirky, fun, and often frustrating.
This is our journey through the struggles with tics, medication, and the rest of the world.
Our story begins with me and John. We met in 1999 when he and my best friend attended the same college. John was shy and adorable, and I instantly knew he was my mate. When we first began dating, he sat me down and got this intensely serious look on his face - you know that look that makes women terrified that the guy they're dating is either married with 3 kids, a member of a cult, or a militant vegetarian. When he told me that he had Tourette's, I almost laughed and just said, "Me too."
That was the first time in my life that I felt someone actually understood who I was, right down to the way my brain works. It was the happiest day of my life. I was no longer alone, always wondering if what I was feeling or thinking was normal or if I truly was a freak.
Our life together isn't always sunshine and rainbows. Two people living together with TS can be extremely challenging. We often share tics, and stress can worsen them substantially. If John is having a hard week at work, his tics will bleed into mine. We both have OCD but have different obsessions. I have spent 13 years trying to convince John that the world would implode if he left his socks on the floor, and he has spent 13 years trying to convince me that those socks are holding the universe together. I have a mood disorder which makes me somewhat unpredictable and overemotional. John could teach Cylons how to be more stoic.
And then came Perrin. While neurotypical people worry about their kids having 10 fingers and toes, we were having hours long discussions of whether or not we should have a child whose body would constantly betray him. Was it fair to bring a child into this world knowing he would be different, stared at, ridiculed? Who would struggle to write his name or tie his shoes because his brain had a very different idea of what he was supposed to be doing with his hands?
In the end we realized that our son would have the supreme advantage of always knowing his parents understand him. He will never be alone. When he is having a rough day with his tics, he will always know that Mom and Dad KNOW what he's going through. Empathy can be a powerful thing, and knowing that John feels what I feel has made living with this condition much easier. We still get depressed when kids pick on Perrin or exclude him because he's different. We still get depressed when we see how much Perrin struggles with school. But every life is a journey through pain as well as joy. It's about navigating through the obstacles that the world will throw at you and embracing the things that make you unique and even a little bit weird. John, Perrin, and I are on this journey together, and with the love that we have for each other, I have no doubt that we, as well as anyone else out there with TS, can accomplish great things.