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.