I was going to start this post by saying “The worst part of being Mia’s mother is…” but I thought better of that statement. There really is no “worst part”. There are hard parts. There are challenging parts. Indeed, there are parts of being her mother that I sometimes wish I didn’t have to go through. Or, rather I wish I didn’t have to watch Mia go through. But then I remembered something and I could no longer write the post I had planned. I remembered something a seventeen year old non-verbal autistic boy told me. He was only able to convey his truth to me through a computer, for he can speak no other way. I remember thinking two thoughts at the same time – the first being how incredibly amazing it was that he had an outlet for his thoughts. And then my thoughts turned bleak. My second thought, I am ashamed to admit, was a deep and painful thought. I thought about how horribly sad I was for this young man who could only communicate through a computer, as if he were in some way less whole because of it. And then I thought about Mia, maybe she wasn’t whole either. But then he told me something that shifted my thinking completely. His words were as simple as they were true. He said,
“To take away any aspect of my autism would be to take away a fundamental part of me. Autism is all encompassing. It is in every part of me. It affects all of me, but it is not me.”
He went on to describe to me all of the many things he liked to do. Ways he enjoyed spending his time. He told me how autism had helped him achieve his goals – that without autism he wouldn’t be himself. He told me about how his learning to type radically changed his future. Before learning this crucial skill his school was teaching him how to clean up the lunch room. Collecting, wiping off, and putting away the lunch trays was his job, and it would be his future too. He is now in AP courses with typical students. He is in the top ten percent of his class. And when he finished telling me about all of his triumphs he told me he was happy. He told me that he wouldn’t change a thing.
Do you know how many times that statement has saved me? How many times his story has saved me? In how many ways it has saved me? It has saved me from myself and my thoughts more times than I can count. It has saved me at three in the morning when Mia has been up for twenty-one hours straight and it doesn’t appear that she will be stopping anytime soon. It has saved me during the trivial times when I feel as if I am going to faint from exhaustion and I begin to wish Mia were able to just sit down, relax, color in a coloring book, play a board game with me, go to a friend’s house or a birthday party without it being a big deal. It has saved me too during the long hours of solitude I have in the day, when my thoughts wander towards the future and I think of all the things my daughter will not be able to do – fall in love, drive a car, get married, have children, own her own home – it seems to be a never ending list. And in these terrible moments I view her future, in my mind, as lacking, a future that is some way impaired, or incomplete, fractional, partial. In these horrible moments I view her in the future as if she is in some way not whole.
But it’s during these moments that I remember the boy who told me the greatest truth I could have learned about my daughter from someone else. The truth that there are other great and valuable aspects to Mia and although autism is at the forefront of each of those, although autism shapes each action, each thought, each reaction, each moment, it is not all of her. And, although autism will surely shape her future as well, who am I to say it will not be a fulfilling future? Maybe it doesn’t have to be a future in spite of autism, but a future full of promise because of autism. And maybe that isn’t such a bad thing.
Oh, yes his words have saved me when things turn dark. His words have saved me from despair. His words have made me realize Mia is not made incomplete because of her autism; she is made whole because of her autism.