A few months ago I received notice to file the “Annual Report on the Condition of the Ward,” a document required of legal guardians, roles Daniel’s father and I have served since our son became a legal adult.
The court doesn’t grant guardianship lightly, even in cases as clear-cut as Daniel’s. Although he’d been living in Wisconsin for over two years when he turned 18, Daniel was required to appear in person at the courthouse in Illinois, twice: first, so the guardianship petition could be physically served to him, and again several months later, at the hearing itself. We had to demonstrate both that Daniel needed our legal oversight, and that we were qualified to provide it.
Getting him to the courthouse was a logistical nightmare all its own, and by the time our case was called, we were tense and anxious and testy. My husband hovered nearby as Daniel’s father and I escorted our son forward, ready to intercede should he suddenly bolt or become otherwise agitated. We needn’t have worried. Daniel stood complacently in front of the judge’s bench, oblivious to the gravity of the proceedings on his behalf, tapping repeatedly on a sticker book with his index finger, muttering his multi-purpose phrase, “Ahh doh doh doh doh doh doh doh dooooooh…”
We’d been prepped for questions the judge may pose: Did Daniel understand the nature of the petition? Did he agree with its terms? What plans did we have for his future, what long term arrangements had we considered or put in place? And, as divorced parents, could we make decisions together, work in tandem for Daniel’s sake?
The judge asked none of these questions, though. The evidence of her own eyes was the only proof necessary of Daniel’s need for a lifetime of stewardship. An expression of muted compassion on her face, she simply signed our petition, and wished us good luck.
I try to craft a fresh-sounding response to the questions on the report each year, regarding Daniel’s living situation, health and welfare. It feels like a test I never quite ace, my answers distressingly similar despite the passage of years. I note our weekly visits, and the activities that occupy his days: community outings, accompanied by aides, restaurant visits, shopping trips, walks on the beach when weather permits. Not a thrilling chronicle, but more than I once could truthfully recount. His life is not what I want it to be, but it’s a fuller life than he’s had in years.
Noting that the report wasn’t due for several months, I set it aside, escaping to the pages of the crime novel I’d begun the day before.
The plot centered on a 19-year-old man, soon to be released after seven years of incarceration as a juvenile offender. His newly appointed probation officer reflected that the young man would have been acclimated to re-entry into society with day outings in recent months: “The boy would have had excursions accompanied by one of his case managers. Shopping trips, a meal at McDonald’s, a walk in the park.”
Shopping trips.
McDonald’s.
A walk in the park.
I had my annual recap of Daniel’s activities right there. I need only copy, word for word, the description of a prisoner’s meager, supervised outings to capture the essence of my son’s life experience.
I shared this bleak observation with my husband later that evening, my remorse at failing to write a better story for Daniel’s life, that his experience hasn’t changed significantly in the years since we stood before the court to petition for guardianship.
“What kind of a guardian am I that Daniel’s life mirrors that of a prisoner?” I asked mournfully.
Andy listened patiently to my rambling, then asked a question of his own. “Remember the closet?”
I remembered.
It was the room fashioned by Daniel’s teaching team in those last, desperate weeks before he left home for residential school, a one-windowed storage area off the special ed classroom of the high school where he was enrolled as a sophomore. As his mood and behavior deteriorated, day by day, he spent more time in that closet than not, cocooned in his own, secure hideaway, sleeping, humming, fiddling idly with the same few books or puzzles for most of the school day.
And staff allowed it, because they were out of ideas by then, when all the painstaking structure and therapy, the routines and behavior plans and social stories had broken down, Daniel’s behavior so volatile that his team couldn’t walk him through the halls to the lunchroom, for fear he’d lash out, for fear he’d hurt someone.
“Remember the call I got,” Andy continued, “while you were at work?”
I remembered that, too.
They’d asked him to come immediately, to pick Daniel up as soon as he could. Don’t bother parking, they told him, just pull directly across the practice field behind the school, as close to the exit near Daniel’s classroom as possible.
He recalled the bite marks, red and angry and swollen, across the teacher’s arm when she brought Daniel to the car, stark testimony to autism’s vicious hold on our son, the power it wielded, beyond our understanding or control. He recalled the grief in the teacher’s eyes, the resignation of one who had fought so vigorously, and had nothing left to fight with.
Yes, I remembered. I remember it all.
“I know he’s not where you want him to be,” Andy told me gently. “But Daniel’s not in prison. That closet was a prison. They didn’t intend it to be, but that’s what it became.” He took my hand. “But he’s not there anymore.”
I don’t know how to let go of all that remains unmet in my son’s experience, to merely shrug and concede, “It is what it is.” It will never be so simple. Acceptance is an ongoing narrative, rehashed and revised and picked at, again and again through the passages of Daniel’s life. I doubt I’ll ever stop questioning what I could have done differently, if it would have made any difference at all. No one would accuse me of being a glass-half-full kind of person where my son is concerned. Autism stole Daniel’s life before he ever had a chance, and I grieve that every day.
Yet I am grateful, too, more grateful than these pages reflect, for what my son has now, for his faltering progress since I completed my last guardian report a year ago.
Shopping trips. McDonald’s. A walk in the park.
Simple pursuits that just a few years ago we ached for Daniel to enjoy again, pursuits I can no longer provide for him alone. I am his legal guardian, but no longer the right one to care for him. How this haunts me sometimes, when I want him back so desperately, to savor his presence on a daily, reassuring basis. I don’t remember the anxiety in those moments, the chronic worry, the certainty that catastrophe was imminent, a crisis that would prove irrevocable.
Yet I’m witness to Daniel’s adjustment to the life he has, the opportunities at hand. I don’t know if these are enough for him. But whether or not they are enough for me is irrelevant. My role is to ensure that possibility exists for him, that doors open, that the self-indulgence of despair doesn’t cripple me. It means embracing the progress we’ve discerned, however fragile, reaching past the loss, and daring to hope for more.
This kind of thinking doesn’t come easily for me, my thoughts so often colored by what could have been. What life would I describe for my son were this disorder not a part of it? I long to write that story, but that isn’t the story to be told. The one we are writing now needs my passion, my energy, my faith.
I remember that, too.
Year after year, after year.
Excerpt from “Those We Left Behind” by Stuart Neville.