A year ago if you’d asked me what my single greatest fear was, I would have told you it was what would happen to my daughter when my husband and I both died. This fear was so worrisome, so looming that I often stayed up at night worrying. Well meaning people would reassure me that “things will work out, they always do” or “group homes aren’t so bad, many are run by loving, caring people”, but none of this gave me solace. My fear was the driving force behind my desperate pursuit of various medical interventions and treatments for my daughter. This fear, more than any other was what drove me to search for a “cure”. When I thought of my daughter’s future I saw one of those dark, formidable, gothic institutions, now used as set locations for horror movies. Once my mind had latched on to that visual image my fear became so overwhelming, my throat so constricted, my body so awash in terror I would literally shut down, like an overloaded circuit. Fade to black.
So what changed? I began to read things like this –
Amy Sequenzia, a non-speaking, writer, poet, Autistic self-advocate from her poem Feeling Good:
“Feel the warmth of another soul Ban the thoughts that block the light Refuse to hear what hurts, listen to the cry for help behind it
Well-being, feelings of unity We are all the same”
“1. When I was a little girl, they held my hands down in tacky glue while I cried.
5. When I was a little girl, I was autistic. And when you’re autistic, it’s not abuse. It’s therapy.”
Again from Julia, her post, The Obsessive Joy of Autism:
“If I could change three things about how the world sees autism, they would be these. That the world would see that we feel joy—sometimes a joy so intense and private and all-encompassing that it eclipses anything the world might feel. That the world would stop punishing us for our joy, stop grabbing flapping hands and eliminating interests that are not “age-appropriate”, stop shaming and gas-lighting us into believing that we are never, and can never be, happy. And that our joy would be valued in and of itself, seen as a necessary and beautiful part of our disability, pursued, and shared.”
“But I’m not invisible anymore. I’m here, and I’m me, quirks, obsessions, passions, stims and everything else that makes me unique. Look out world, here I come.”
There were so many others, so many voices out there, somehow reading these blogs calmed my fears enough that I was able to begin dissecting them. I was able to pause, even for a moment, allowing me to ask, what is this? What is this fear really? And although my immediate answer was that these were fears based in very real, logical assumptions, I was able to see that they were just that – assumptions. They were still not reality. Not yet. I was also able to realize those fears were causing me to act in irrational ways. My thought that the fear was a healthy, natural response to what I believed to be the reality of the situation, prompting me to pursue all kinds of risky, unproven and untested “treatments” for my daughter’s autism was taking all of us down a dark, dark path. That fear caused me to behave differently toward her, but I couldn’t see that until I’d stopped and saw how my behavior toward her changed. When I was able to stop, just for a moment and examine the fear, the fear began to fall apart.
My fears were based in things I assumed were the inevitable consequence of what I believed my daughter was or wasn’t capable of. But this was not based in fact, I don’t have the ability to see inside my child’s mind. In addition my fears were clouding all the things she was doing that I ignored or couldn’t see or hear. Every single day, my daughter displays her vast intelligence. When I read the writings of Autistic people occupying every point on the so-called spectrum, I began to see that my assumptions, what I had assumed I knew and believed were not based in anything other than that. It was at that point that I realized I had a choice. I could choose to believe in her incompetence and the inevitable outcome this perceived incompetence would take us or I could choose to believe her competent, making that looming horror no longer a given.
As I wrote recently in a comment to someone, I chose the latter because to do otherwise and be wrong would be far, far worse. This is something I cannot risk or would be able to forgive myself for. But there’s another piece to this that is also important, and that is when we assume great things are possible, great things tend to happen. It’s human nature to strive for independence, to communicate, to connect, ALL humans want this. Given a little encouragement we can do things we never imagined possible, but given nothing or criticism we wilt, become sad and angry. My belief in my daughter will not change the very real challenges she faces, but it does and will help her far more than if I do not.
I’m off to the AutCom conference!