The dark of the summer night was closing in on us. Our children’s therapeutic horseback riding session had ended and we were headed home. But first, as the motor of J.’s PT Cruiser was running, I stood on the other side of his driver’s side door. We talked about my current book project, about a featured family, and how J. had mentored them gently onto the pathway of this question-chocked journey of having a child with autism.
J. is a systemic advocate extraordinaire and is featured, with his family, in the book. We have watched one another’s children grow up. Our children with autism are very different, yet they are the same in some of the more troubling-ly enigmatic ways. Unlike the children of many of our dear mutual autism-parent friends, our children have not shot their stars into the universe to create their own special galaxy. At least not like our friends’ children, in terms of “successful outcomes” by “neurotypical” society’s standards. Our children have stayed on the ground in their development — maybe only to levitate a few feet above it — in many ways…never shooting into a galaxy of unpredictable and almost typical development.
And that’s when J. said it. “Always. Always. Always.” He said he had told the father he mentored “it” would NEVER go away. Though I’ve struggled over the years with these feelings, I had never heard someone say this. I’ve learned that when my eyes suddenly water upon hearing something it means it hits at a core of truth to me and this did.
I held that problematic affirmation about “it” close to my heart, several times removing my hands long enough to take a peek at it’s truth and then cover it back up tightly again. And then, two weeks after that conversation in the parking lot, I sat at lunch with another special needs mother. An attorney. Her son had another disorder. And that’s when I shared J’s statement about “it.” And in doing so, fierce, juicy, burning tears really sprung to my eyes, this time threatening to spill. No simply misting this time. My friend at lunch knew it was true. She nodded. “Oh, yeah,” she added with conviction. And at that moment, I, too, really knew it, and claimed how true “it” is for me.
“Always. Always. Always,” J. had said. “‘It’ NEVER goes away. You will ALWAYS question if you made the right choices for your child. Could you have done more? Did you do the Right Thing [in regards to the crucial choices of interventions, programming, schools]?
Yeah, I’m all Zen about such things normally. About not looking back to a Dead Past. About Living in The Now. About Choosing No Regrets. About knowing I did the best I knew to do at the time and to move on forward. Those are all true. I do practice them in my life religiously. But deep, deep down, buried within the psyche of most every special needs parent is the question(s).
Always. Always. Always.
Photo: D Sharon Pruitt