When she was 11 years old my daughter Natalie was an extra in a movie. A friend of ours landed her the roll of “church-goer” in a scene filmed at the Catholic parish just a mile from our home, when he served as assistant director for “Stolen Summer,” first winner of the Project Greenlight film competition launched by Ben Affleck and Matt Damon in 2000. Parts of the movie were shot here in Deerfield, hometown to the contest winner, writer/director Pete Jones.
As you can imagine, she was thrilled, delighted with the glossy photo of the film’s co-star, Bonnie Hunt, who’d kindly scrawled next to her signature, “It was great working with you, Natalie!”
I ran into Pete Jones at Starbucks recently, and the title of his movie has been in my mind ever since. As the summer of 2014 passed into fall, I had the sense that it, too, had been stolen, or perhaps more accurately, simply lost.
It’s been nine months since my son’s move to an adult family home, the transition we planned for and agonized over for years. I realize now how much hope I’d pinned to this move, how dearly I wanted it to mark a turning point in Daniel’s life, to be the moment when the rest of his life, his real life, began.
For months I’ve been holding my breath, my own life on pause, waiting for the transformation to unfold.
I knew enough to give it time, to allow him to settle, to adjust to the life-change this move would entail. And he did adjust; he adjusted rather beautifully, falling into the routines of the new household, agreeable if distant companionship with his housemates, and affectionate, nurturing bonds with his caregivers.
He adjusted better than I did, in fact, unburdened by expectations honed over a dozen fretful years. Perhaps this is one gift autism grants the people it affects as profoundly as it does my son: Daniel doesn’t realize that in the eyes of the system he is now an adult.
It took me all summer to recognize that I’ve been watching his childhood recede, and with it, the mindset when autism still seemed malleable, and open to improvement; where options and potential still shimmered with expectant possibility. His move to the adult system, so long anticipated, now carried a more threatening measure of permanence, the grim recognition that this may be as good as it gets.
I should have seen this coming. Rationally, I knew his behaviors wouldn’t magically disappear once he turned 22 and moved to a new living situation. His obsessions moved with him, stubborn, baffling, hampering every new opportunity I’d allowed myself to dream would emerge at this stage of his life. The off-grounds day program we imagined providing structure, purpose and meaning to his days was put on indefinite hold at the end of August, after repeated, disruptive episodes of beverage stealing and aggression. Staff now provide a “home-based” program, involving scheduled chores, neighborhood walks, visits to the animal shelter: modest pursuits within the safety zone, the scope of Daniel’s tolerance.
I knew this was possible, even likely. I hoped anyway, and clung to the nebulous but cherished future I’ve been envisioning for my son for years.
All summer I waited for it to get better, even as I understood that whatever “better” means now is light years away from what “better” used to mean, once upon a time. For months I’ve been laden by an inertia I don’t fully understand, except the vague fear that the best days of my son’s life are behind him, the sense of possibility I’ve clung to for years now gone.
I don’t know if this is true; my fear may be a purely defensive, reflexive response to disappointment, to a diagnosis I’ve been struggling to reconcile for 20 years. I pray that his life will evolve in ways that I can’t begin to imagine now. But with the stakes so high — the rest of my son’s life on the line — I can’t bring myself to let go and “trust in the process,” as we are told to do. That kind of simplistic adage has never cut it for me, not where my children are concerned.
Yet I’m no longer Daniel’s caregiver; I haven’t been for nearly seven years. Accepting that I could not care for him nearly broke me, left me stunned, powerless to degrees I’m still discovering. The sorrow of letting him go, the dank, potent guilt of it, keeps me from “turning it over,” from trusting that his life will unfold as it is meant to, even when that faith is the only thing left to cling to.
Instead, I spent the fleeting summer of 2014 in a cocoon of rigid, frightened watchfulness, eyes fixed on a prize I already knew wouldn’t be won.
We dreaded the shift to adult living, the ominous milestone hanging over the head of each parent of a profoundly disabled child. It took three years to secure Daniel’s placement, and when we finally had it, I was buoyed by a surge of optimism that carried me right over the edge. The new beginning we were hoping for proved merely more of the same, a change of environment scant armament against so powerful a foe as autism.
My disillusionment crippled me all summer. I accomplished almost nothing, focusing my impotent attention on Daniel’s progress down the same, narrow path he’s been traveling for years. I must have been aiming higher than I realized, back in January, when he took to his new home with ease, laughing and smiling by the end of that long day when he arrived, officially, at adulthood. It seemed like such a good omen at the time. I feel betrayed by my reckless optimism in the face of his troubled history, by the exuberance that let me forget, just briefly, that autism is lifelong.
This summer wasn’t stolen. It was simply lost to me.
I can let go of that now, though, and write about it, even while wrestling, still, to understand my reactions. The journey of acceptance is lifelong, too. I’ll be traveling this path for the rest of my life, my real life, as well.
There are summers yet to come, in my lifetime and in Daniel’s, opportunities still for discovery, for steps that may lead, one day, beyond the path he is traveling now.
This summer is gone, but Daniel is still with me.
He will always be with me.
