Today I decided to reactivate my blog not as a research and experiential blog as it was in its first Avatar, but as a place i can vent…ponder…and hopefully celebrate occasionally. I am the mother of 14 year old Sahil, a boy on the spectrum. Today is a vent.
I have been reading, living and breathing autism for the last twelve and a half years. We have had highs and lows and many many plateaus. I have learned slowly who my son is…and learned to appreciate his character, intellect and love for me. I have learned to count my blessings. The fact that despite being severely impaired in many aspects of his life his cognition is relatively intact. The fact that despite the physiological challenges and many invisible medical issues my son grapples with he has a wonderful positivity and even more amazing implicit trust and faith that I will finally make things better for him . The fact that my son has learned to use the written medium to communicate his deepest feelings and thoughts. That from somewhere…I am usually able to dig very deep within myself and find the strength to continue to NOT accept his impairments as carved in stone and look for solutions with the same intensity as I did twelve and a half years ago.
But sometimes this sanctum I and Sahil exist in is violated…. Yesterday we were going on a family visit to the Greater Cleveland Aquarium. He had worn his shoes and jacket and was waiting impatiently for me at the door of our apartment. I was locking up and then remembered that I had forgotten my camera inside. I re entered my apartment to retrieve it and in the meantime Sahil made off to the lift. By the time I reached the lift lobby he had already gotten into a lift and disappeared. This has happened before, and normally he always comes straight back to the sixth floor where we live. I pressed the lift button waited patiently for a lift door to open on our floor. A lift arrived and the door opened…the lift was empty. I let the door close and pressed the lift button again to call the second lift…convinced he would be in it. The lift door opened and my neighbour emerged. He said “Hi your son is in the lobby and taking down the Christmas tree”
All you need to destroy a balloon is a pinprick…this was my pinprick.
When I reached the Lobby sure enough Sahil had denuded the apartment Christmas tree of all the ribbons decorating it. I grabbed the ribbons mortified and placed them on the table.
I forgot about all the intelligent things he had ever typed, the fact that his school principal thought that one day he might go to college…
All I can think is what a friend of mine had said to me once ….that autism is a zero sum game…you are either functional or you arent. Cognition doesnt make the cut alone…its only a small part of the puzzle…a contributor to functionality…perhaps important but there are so many other important skills that make human beings functional enough to live in a society…social understanding…impulse control..emotional balance..and many many other prerequisites.
And why did he pull the ribbons off the tree instead of coming back to the sixth floor? Perhaps because he is obsessed with stringy objects and because of his irritation at being made to wait, and the fact that he knew he was unsupervised, he succumbed to the urge to get at the ribbons.
I had argued with my friend that in terms of her binary analogy autism was a journey where we moved from the zero to the one.
But finally you have to decide whether you are at zero or at one