New Light

When my son was ten years old I read an essay by Chicago writer and educator Robert Hughes, “Getting to Know the Family Savant.”  He described the painful process of abandoning the “great cosmic myth of compensation”: that autistic people are automatically gifted with some extraordinary genius — a talent for music, an aptitude for languages, a startling, photographic memory.

Instead, Hughes gradually realized that his son Walker’s true gift was simpler, but no less valuable: his exuberance for life, his innate, irrepressible joy, visible “…on the face of the beaming boy himself, the knack for happiness he had then and has still.”

I was so moved by the essay that I wrote Mr. Hughes an embarrassingly long letter, thanking him for helping me recognize that, despite the devastating diagnosis of autism, my son, too, was happy; he was, in fact, the happiest person I knew.

I held that belief for a long time.  Despite his ups and downs, his extreme behaviors and outbursts, Daniel still seemed, for many years, satisfied with his life, unconcerned with what the wider world had to offer.  I consoled myself, believing he was content, secure, and confident that he was loved, that his autism even insulated him from the conflicting and messy emotions the rest of us regularly endure.

Over the last few years, though, my faith in that scenario has eroded.  As the degree and frequency of his outbursts increased, as his quirks became rigid, limiting obsessions, as the scope of his world devolved with each passing week, I began doubting that he could possibly be happy at all.  His behavior was screaming otherwise.

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Never than in the past twelve months have I felt more powerless to help my son.  After an exhaustive search for his adult home, last January we selected a highly recommended care agency with a reputation for success with difficult behavior cases like Daniel.  As an added bonus, we knew the house director from Daniel’s previous school in Wisconsin.  Everything pointed to the positive and forward-moving experience we so wanted for our son.

Yet it didn’t materialize.  We soon recognized a pattern of erratic response from management to our questions and requests, from the very house director in which we’d placed such faith.  From home maintenance to haircuts to implementing the active and engaged lifestyle promised for Daniel, nothing panned out as planned.

His challenges became more entrenched than ever, with alarming new behaviors, like “elopement,” or bolting from the house, emerging after just a few months.  His day program, designed to provide purposeful, satisfying activity, fell through as his beverage-stealing obsession disrupted staff and clients alike.  By August he remained at home almost all the time, with little stimulation to channel his energy or the intelligence I’ve known for years he’s possessed beneath his unpredictable exterior.

No one in our family was satisfied, none of us willing to accept that this was as good as it would get for our cherished son and brother.  As parents in our situation understand all too well, however, the “obvious” solution — move him — was anything but simple.  Resources for people with Daniel’s challenges are scarce and hard to secure.

And even if we found an alternative, what impact would another move so soon have on Daniel, tearing him from the day to day caregivers whose devotion to him was never in question?  How would he react to another transition of this magnitude?  And the most haunting question of all: what if it still didn’t get better?

We’d given this agency more than a fair shot at managing Daniel’s needs, though, lending our support in every way possible. Waiting and hoping that life would improve for him there was no longer an option.

As it happened, another agency we’d seriously considered a year ago had kept in touch, their case manager checking periodically during the past twelve months on Daniel’s progress and adjustment to his new situation.  When our advocate from Wisconsin’s Department of Aging and Disability inquired in early November about Daniel’s possible transfer to their care, the case manager was enthusiastic, and immediately set the complicated application process in motion.

The ensuing weeks passed in a cascade of emails and phone conferences; discussion with the new agency and tours again of their facilities; a follow-up visit and in-person reassessment of Daniel at his current group home; and anxious, breathless days of waiting, of questioning and speculation, of daring, again, to hope that we might find the right path for our son.

In mid-December the case manager delivered the news: the new agency in Racine, an hour closer to both my husband and me, and Daniel’s father and step-mother, was willing to rearrange their current staffing and housing openings to accommodate Daniel, and offered him a place at one of their adult family homes.

They actively wanted our son.  They saw his potential, and believed they could help him achieve a fuller quality of life.

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It’s been two and a half weeks since the bitterly cold day Daniel’s father and I said goodbye to him at his new home, a well-maintained, carefully decorated house on a quiet residential street.  His bedroom had been outfitted with new furniture, bedding, and artwork on the walls, a flat-screen TV and DVD player set up and waiting.  Staff was in place to welcome him, ready to manage whatever behaviors he threw their way, their philosophy of inclusion, of continual activity, stimulation and involvement in the community, regardless of challenges, an encouraging change from the restrictive environment Daniel had grown accustomed to in the past year.

Just hours later I received a “selfie” of Daniel and his case manager, Aaron, the man who had, in the week before the move, twice traveled an hour and a half to take Daniel on short excursions, so Daniel would know him and be more comfortable in his presence.  I couldn’t tear my gaze from that photo, Daniel’s face bearing the hint of an intrigued smile, as though he and Aaron were already sharing an adventure, something new and exciting and worth exploring.

The very next day Daniel went to an indoor water park, an activity he hasn’t enjoyed in years.  An emailed photo showed Dan waist-high in the pool, Aaron’s hand resting on his arm, guiding him, literally, through new waters with gentle, calm assurance. One week later, another pool photo: Daniel smiling broadly, confident, on his own in the pool, his face open and sparkling and alive, his eyes radiant with joy.

He’s made successful trips to restaurants, to Target and Sam’s Club and Starbucks, to a local museum; he navigated a company-wide “social” at a roller rink, only moderately distracted by the concession stand, which once would have derailed him completely.  These modest outings are huge for my son, whose compulsive behaviors had just weeks ago nearly eclipsed life outside his group home.  They are the activities we’d imagined for him, chances to discover, to grow, to be part of the larger world.

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I approach hope sideways these days, wary now of plunging recklessly into the shimmering light of dreams, of believing too soon in the possibilities I want so desperately for my son.  The last year cured me of that, trusting in a shiny new beginning that became instead a slow-motion crash, each incremental slide more devastating than the last.

Yet there is no mistaking the new light in my son’s eyes, the expectation and curiosity that’s been missing for months.  He seems to recognize already that he’s on a new road, a different journey he is eager, now, to travel.  He is responding to staff’s repeated assurances that he is their “great guy,” their “kind guy,” their “happy guy.”

I hardly dare to believe it, but it seems to be so.

He is my happy guy again.

Robert Hughes responded to my letter in 2002 with a thoughtful letter of his own.  His kindness encouraged me to keep writing ever since.  His memoir about life with his son, “Running With Walker,” is available here.