There came a place in my journey when Jaison was 4-5 years old when there was a major shift in my approach to my life. Every single moment before that major shift happened had been about “saving Jaison from autism.” My life had become completely consumed by wanting Jaison to be one of the children who seemed to “recover” from autism. All I wanted was for Jaison to function and grow up to be independent.
The Sharon I had been before autism arrived in my life—-seemed to have flown out the window. Nothing was more important than my Jaison’s healing. I know you know what I mean because so many of your posts have the same flavor. Maybe you’re not quite as obsessed as I was–maybe you are
The shift came when I began a process of asking “Who am I?”
Although I found great value in telling my story to those who would listen because I felt understood and comforted, I also began to realize that the more I told myself the story of suffering because of autism–the tighter the noose seemed to get around my neck–the more pain I was in. I was in pain because I believed that story that my life was not going to feel better until Jaison recovered—and it was not looking as promising for me and my Jaison as it looks for many of you. His progress was on the very slow end of autism.
I questioned if who I really am—-is a woman whose life took a drastic turn into the mundane and hopeless because of autism. If that was all I was.
Of course not—came the answer. I’m a wife, and a friend, and a daughter, and on and on.
But something had cracked—or more precisely opened.
I realized that I didn’t know who I was. Not just because of living with autism—but at the core of me. When I looked to see who I was I found emptiness and si! lence. At first the thought that came when I saw the emptiness was—- I’m nobody. I don’t have an identity. I’m a nobody.
But I didn’t stop there–I asked myself—am I really a nobody because when I look to see who I am—I get no answer–just this silence. Does this silence mean I’m nobody—-or does it mean something else?
So I sat and sat and looked at that emptiness to see if it meant I was nobody or not.
Sounds totally terrifying right?
It wasn’t terrifying—it was freeing. I didn’t have to be someone with a child with autism, I could just BE. The silence and emptiness wasn’t doom like I feared—-it was FREEING. The silence and emptiness turned into calmness…and the calmness turned into peace. Eventually the peace turned into this warmth that became joy.
I was free. I could stop believing the thought I was telling myself.
Thoughts like “I’m the one who has to change diapers for the rest of my life.” Thoughts like “I’m always going to be running around Jaison trying to figure out what he wants–and I’ll never have time for anything else.”
I looked to see where those thoughts came from—I looked to see what was the substance of those thoughts—-like a ceramic pot is made of clay or a woolen rug is made from wool—–I wondered what was the substance of thought. And I found that thought had no substance. The thoughts arose from the same stillness, emptiness and silence—and I didn’t have to believe them, or follow them anymore.
I was free to just be here in this moment without the story—the story of autism. I felt deep peace even if Jaison didn’t recover. And I still do.
This is the gift that autism gave me—I found a path to freedom. I found a source of fulfillment that wasn’t dependent on what happened in my life. I realized that I might in fact be happier and more at peace than people who hadn’t had to take such a rough road.
And my connection with Jaison deepened because I could see him beyond the appearance of autism—and he is magnificent—he is that silence and peace and freedom also.
I want to share this with other people who have autism in their lives—-I want to shout to the world that although autism looks like a prison it has a silver lining that points to freedom beyond what the world knows.