Sunday, December 19, 2010
Things I meant to say
One of my friends stopped by today and over a cup of tea while we were getting caught up, told me that his sister had called to say that she had some bad news. He told me that his 15-year-old nephew had just been diagnosed with Aspergers. He indicated that the diagnosis was no surprise to him, and we talked about that. I automatically corrected about the term "bad", "Well, that not really bad news, just news", and we discussed the lack of resources briefly and his educational plans, and then moved on to another topic. He left, I took the kids out sledding, and then we came in and started some baking.
So I'm taking some cookies out of the oven, thinking about getting supper ready, and I look over at Ben, who is helping shell pistachio nuts with his sister. That's when it hit me.
If I'd been in a movie, there would have been that whooshing noise and some kind of blur special effect and then a flashback to me, almost five years ago, sitting in a metal chair in a small room at the Children's autism clinic. We'd just gone through days of tests with an array of doctors and PhD students. We'd been referred to the hospital by our pediatrician, and after an exam with audiology, we'd been sent to the clinic because they told us that even though they were sure it wasn't autism, it was the fastest place to get all the testing at once. I now believe that they tell parents that because they don't want you to bolt and not go ahead with the diagnosis.
So, sitting in the metal chair, watching Ben with the final assessor - the head psychologist - expecting that she was going to tell us that he wasn't autistic, just like the audiologist and our pediatrician and everyone else who had chimed in for months. But while Ben sat there creating a block tower, she turned to us and said, "So, Ben's autistic". There were words after that, sentences, paragraphs, but I don't remember any of that because at that moment the bottom fell out of my world.
That was the feeling that I relived in my kitchen tonight, that awful, stomach-twisting confirmation of what I didn't want to hear.
I know that on the grand scale of things it is not the tragedy of being told that your child is dying, or will suffer with a life of pain. I kept telling myself that over and over while what I was really thinking about was how he'd never have a neurotypical life. We all expect our kids to have at least our choices in life, if not more. We take for granted that they will have as much of a shot at education, relationships, careers, happiness, and fulfillment as we have. It is unbearably sad to suddenly think that their lives may be severely restricted. I used to stay awake at night thinking about the fact that Ben may never get married and have kids and a mortgage and a steady job. Honestly, sometimes I still do. But it doesn't terrify me like it used to.
Flash forward to me holding a sheet of cookies in my oven-mitted hand looking at Ben and I really did feel like the most insensitive person on the planet. Time, experience, education, and work have made me a person who no longer fears the spectrum and Ben's future. Part of me is so proud that I no longer see autism as a bad thing, just a difference, but there's no way I would have understood that five years ago. I understand the denial and the wishful thinking and the fears that we beat down and the lies we let ourselves believe because we so desperately want our kids to be "normal". The nephew's Aspergers may have seemed obvious to some, but to my friend's sister I'm sure it wasn't and I'm fairly certain that the bottom has just dropped out of her world.
I wish I'd been a bit more present today so I could have offered a kinder word and a warmer heart.