Sara Willis of Conway, a mother of two and member of the AETN Foundation staff, joined us for the Community Cinema screening of "The Horse Boy" last week at Hendrix College. "The Horse Boy" follows the journey of an autistic boy and his parents' across the vast, wild landscape of Mongolia in search of a cure. Below are Sara's thoughts on the film and discussion that followed:
I spilled a couple of tears no more than five minutes into the 60-minute film. Ill admit Im an easy cryer, but not for just any reason. Although vastly different from my own familys experience, the parallels that were there throughout the story were both surprising and comforting. The grieving that comes after diagnosis. (Even though didnt each of us who got that diagnosis for our child already know? And I mean know. Long before the rubber stamp.) The lingering guilt and fear that wakes you up in the middle of the night. What did I do wrong? What am I not doing right? What am I not doing enough of?
And the quest that you set yourself on to find every scrap of cure you can find. Until you begin to loathe the word cure. Because you figure out pretty quickly that there is not a cure because this isnt that kind of diagnosis. The word cure doesnt fit Autism. You arent looking for a cure so much as you are looking for a parenting manual to a child that not even the experts can tell you how to parent. Not really. Not wholly.
You need new words. New tools. New ways to help your child grow up in a world thats not built for him. A way to help your little square peg fit into a round hole.
And then here on the screen Im watching this family who has found a way to go halfway around the world on their quest. They are sitting on horseback overlooking a herd of reindeer and a village that took two days travel on horseback to reach...thats two days more travel after the roads had ended. A perfect metaphor for the job of raising an Autistic child. You have to go to where the road ends. And then keep going. And this family does. They go from shaman to shaman for blessings and rituals for healing for their son.
I loved this film. For it's gritty, hard worn, exhausted, rained on and muddied, strange and beautiful hope. In the first two years around my sons diagnosis (the first one looking for the diagnosis and the second one after it, trying to fully understand it) I was bombarded by friends and family and other parents sending me titles and websites and clipping articles for me to read. I devoured them all. But so few of them filled me with anything but fear.
But this familys story was so different. It helped me to appreciate just how far you really can go. And reminded me to keep thinking outside of the box. It was full of experts in the field who spoke of Autistic children in ways that I had rarely heard from the specialists of our local medical community. In four years of this journey, I probably have not yet reached 24 cumulative hours of time speaking with doctors. Days on end spent in clinics, yes. But with only a brisk closing talk with a doctor at the end of those visits. This is not a complaint or a judgment of the care we have received, just an observation. There are not enough of those experts. And there are so many children to serve.
You can begin to feel helpless and a little lost. As if you are calling up from the bottom of a well, hoping for someone to find you and lift you up and out of the darkness. But there is very little darkness in The Horse Boy. And wave upon wave of hope. Even if you arent facing the challenge of raising an atypical child, you should check it out.
"The Horse Boy" will air on AETN Sunday, May 16, at 11 p.m.