Autism and Hope: Why I Share Stories About My Son
Hope. Only four letters, certainly not a long word — but a big word.
Wikipedia defines hope as “an optimistic attitude of mind based on an expectation of positive outcomes related to events and circumstances in one’s life or the world at large.” Like most of what she wrote, Emily Dickinson’s definition of hope is much prettier. Miss Dickinson gives hope wings:”Hope is the thing with feathers that perches in the soul and sings the tune without the words and never stops at all.”
April is Autism Awareness Month, and there will be stories of hope and feathers everywhere you turn. From families of recently diagnosed children who are struggling to find the feathers in their souls to parents of adult children who found their feathers decades ago. Some days, as parents we experience more molting of our feathers than we like, which makes us feel exposed and vulnerable, but, in time the old feathers are replaced with new ones and our ability to hear the tune of our feathers returns.
Since the first moment I knew it was autism, I felt the feathers perch in my soul. At first the feathers were small as I had to grieve and accept that what I once hoped for him may change. I had a hard time feeling the feathers back then. As time passed, the feathers grew, and I clung to each and every feather that perched in my soul — for without the feathers, the only alternative was falling and crashing as I let go of hope. As one milestone after another passed him by, at first I would crash, but in time I felt the tickle of hope that one day perhaps, he would catch up. With every feather that fell away, a new one took its place helping me to hear the tune again.
When I would beg him to “look at me” I felt the feathers tickle my soul as I occasionally caught a glimpse of his eyes and saw his own hope reflecting back in my own. Ryan’s feathers tickled his soul hoping one day I would understand that he can see me and hear me, even if he is not looking at me. Ryan clung to the hope that I would hear the unique and beautiful tune his soul was playing while drowning out the tune I always expected to hear. Some days I listened more than others.
In those early days, the feathers that perched in my soul were small, thus the tune they played was quiet. Over time though, the feathers grew and the tune got louder. I began to feel and hear hope more frequently. Hope was found in an unexpected hug, a beautifully written essay, a song being sung from the shower and communication through scripts that brought him joy. Yes, I swear I felt the feathers grow.
Hope is a powerful word, and without it, Ryan would never be where he is today. It was hope that caused me to push, nag and prod him along. Not hoping for change, not hoping for him to be someone else, just hoping for him to be the best him he could be. And for me to accept that the best him, the perfect him, was better than the him I once imagined all those featherless years ago.
Decades ago, mothers were told there was no hope; not even the tiniest feather could be felt awakening their soul. They were told to institutionalize, give up, move on, stripping them of their feathers and muting the tune their soul was so desperately trying to play. Without hope, there were no feathers, there was no tune, there was no “optimistic attitude of mind;” there was just despair and hopelessness. My heart aches for the parents whose feathers were stripped away by those who thought hope was a waste of time.
Today, when I share stories of Ryan’s progress, of how far he has come, I write stories of hope, I share the gift of feathers. People tell me, “Ryan gives me hope for my son/daughter.” I love that, but at the same time it concerns me. I worry I may give “false hope” — false feathers, as each autistic individual is different, but then I question… is there such a thing as false hope? Who wants to live without hope? Without feathers perching in your soul and singing a tune? Sure, the tune is different for my child than yours, but we still need to find the feathers that enable us to hear the tune in the first place.
If I stop sharing my feathers then I am no better than the so called “experts” who stripped away the feathers of all those mothers years ago. So I will continue to share my feathers, my hope, my tune because just like birds cannot fly without feathers, dreams and hope cannot either. Although I am no Emily Dickinson and my words will not span into the next century, for parents loving a child with autism, I’d like to think in this century, in this moment, I too give hope wings.
Hope is necessary. Hope is needed. Hope is real. Hold onto it. Feel the feathers inside you, inside him. They are there. Your child is trying so hard to fly, and he wants you to fly with him and hear his beautiful tune even if the tune sounds different than anything you ever expected to hear. The tune is beautiful, and with or without the words, you can hear it, but you have to listen, you have to hope so the tune for both of you “never stops at all.”
Follow this journey on The Awenesty of Autism.
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