Good Enough

The day before she planned to board a plane to Chicago for Christmas, my sister-in-law tripped on the stairs of her home, tumbling all the way to bottom.  Fortunately, she was able to call a neighbor, who drove her to the hospital, where doctors diagnosed a nasty concussion and badly sprained ankle.

Advised not to fly for at least a week, she spent the holiday alone, half a country away from the family who loved her.  It was not the annual reunion any of us had hoped for.

It could have been so much worse, of course, as we told ourselves repeatedly over the next few days.  Living alone, she may have lain unconscious for hours before someone found her.  She could have been permanently injured, even killed.  The possibilities don’t bear thinking of.

She was, in fact, lucky.  Yet luck is a relative term.

I’ve struggled with this kind of contradiction often since my son’s diagnosis, seeking the bright side, the countless positives in Daniel’s life to counter the implacable weight of autism.  These self-imposed pep talks seldom evoke the level of gratitude I believe I should feel, however, or appreciation for the grace I’ve been granted, again and again.  How often have I told myself that what I have, what my son has, should be enough, even as my self-pity shouts me down: “Of course it could be worse!  Of course it could!  But it’s bad enough as it is!”

Slowly, though, I’m emerging from this kind of wallowing.  This past Christmas I realized that, perhaps, I’m making some progress after all.  And I don’t know how I feel about that.  It’s taken me weeks to wrestle my emotions into cohesion.

We brought Daniel home for a day visit on Christmas Eve, an excursion we haven’t attempted in several years.  It’s easier on everyone, including him, to simply celebrate at his group home in Wisconsin, rather than tempt the erratic behavior that makes his living there necessary with transitions back and forth from the environment he’s grown accustomed to over the years.

This year, however, I decided to try again.

The holiday season is not particularly joyful for me, and despite my grim resolve each year to make it so, over the last decade it’s become a period to be endured rather than savored.  Exceptional work demands at the close of last year had me more anxious than ever, and a wise friend urged me to set aside, just this once, a few of the traditions I’ve felt duty bound to maintain, even as they brought more stress than satisfaction.  I tried to take her advice.  Christmas 2016, for instance, marked the first year since my children were born that I didn’t include their photo with my Christmas cards.  And what do you know?  The world survived, just fine.

Maybe this frame of mind helped ratchet down my expectations for Daniel’s visit, let go just a bit of my perfectionism and take the day as it came.  It didn’t have to be perfect; almost certainly it wouldn’t be.  And indeed, it wasn’t.

My Facebook post that afternoon painted an idyllic portrait of family togetherness, drawing supportive comments from my circle of friends.  My daughter, her boyfriend, and their enchanting puppy were home as well; we dined at Denny’s, Daniel’s favorite restaurant, and exchanged gifts around a glowing Christmas tree.

Pictures rarely tell the whole story, of course.

I’d planned to give Daniel his Christmas stocking, bulging with favored treats, before leaving for lunch, but he showed little interest, leaping from the sofa and pointing to the door — “Denneh?  Denneh?” — again and again until we tossed the stocking aside in resignation.

At the restaurant he was allowed soda to his heart’s content, but this did nothing to slake his obsession with the beverage, demanding more as soon as we got back in the car.  Nine years after leaving Illinois, he still remembers the precise location of the grocery store nearest our house, and pointed in its direction as we drove quickly home, praying he wouldn’t wet his pants before we got there, a very real possibility due to his public bathroom aversion.

Back in the living room once again, we tried enticing him with the mountain of merrily wrapped gifts assembled under the tree. He was having none of it.  “Stoar?  Stoar?”  His requests became more belligerent as I tried coaxing him with a sticker book, my well-stocked refrigerator sadly lacking the 16-ounce bottle he apparently had in mind.


One photo I posted on Facebook was especially popular, my once-little boy now towering over me, hands on my shoulders, looking deeply into my eyes as I smiled up at him with joy.  It elicited tender comments from far and wide.

“I can see the love in this picture!”

“You are his world!”

“This picture says so much!”

It said plenty, all right.  It said our whole happy Christmas visit had been hijacked by Daniel’s unremitting obsession; that I was desperate for the holiday’s magic to break the vicious hold of autism for just one day.  That as that photo was snapped, he’d just released my chin after pulling my face to his, laser-focusing as he repeated, again and again, “Stoar?  Stoar?  Stoar?”

We gave in.  Armed with a bottle of Coke Zero chosen from the gas station minimart, Daniel finally relaxed, giggling, posing for photos, enjoying time with his family before Andy drove him, happy and willing, back to his Wisconsin home.

It was an exhausting afternoon, another celebration driven by the disorder that has dictated the course of our lives.  But while the day failed to unfold as smoothly as I had hoped, it didn’t crush me as some past Christmas ordeals have done.

I don’t know why this was so.  Was it because my daughter was so obviously happy, or that her boyfriend touched me so deeply with his maturity, his affection and respect for his girlfriend’s special brother?  Was it the joy of their dog Mattie’s exuberance, the fun of having a puppy in the house?  Was it that we made it through lunch at a restaurant without incident, no hapless diner’s soda wrenched from their unsuspecting hands?

Did the positive, this time, simply outweigh the negative?

I can hardly believe it’s that easy, because I don’t do simple very well.  Separating my feelings around Daniel’s disability from the rest of my life is an ongoing challenge; his autism colors everything in my world.  With Daniel’s struggles so blatantly on display, enjoying a festive holiday feels like a betrayal, acceptance a sell out to my own longing for harmony, for normalcy, for simple. Daniel’s reality is my own, and conceding that it is good enough is defeat, like giving up on a Christmas photo.

A mere bottle of soda satisfied my son, but that wasn’t the way I wanted it: I wanted my will for Daniel to prove stronger than his fixation, than his disorder itself.  That kind of transformation doesn’t happen very often with autism.  I know this by now.  I still hope for it, though, unwilling to accept circumstances as they are because they could be, should be, so much better.

Yet this year I felt the grace of truth more powerfully: those circumstances could be worse.

And I hold these truths now as well: Daniel’s smile as he ran from Andy’s car to our back door, beaming, eager to be home again; his delight as Mattie pranced on his bed, licking his hands and face while I tightened his shoelaces and brushed back his hair.  His careful examination of the tree ornaments, touching, tapping, as he did when he was a boy.  His willingness to return at the end of the day to the life he knows now and embraces, untroubled, secure in our bond and our love.

For a few hours on Christmas our family was together.  Imperfect, stumbling, winging it, but together.

And this time — dare I say it? — that was good enough.

Can You Hear Me Now?


My 89-year-old mother-in-law is fiercely independent, a fact reinforced in late August by her failure to call for help after slipping off her kitchen barstool at 11 p.m., painfully injuring her right foot.  She didn’t want to bother my husband and me so late, or disturb her neighbors with a 911 response.

Turns out she’d fractured her ankle in three places.

Visiting her in rehab, Andy found her on the nursing center’s patio, her wheelchair parked at a table with three fellow patients, eating a pizza lunch.  She’s too polite to express it openly, but my husband knew immediately that his mother didn’t want to be there.

“So they’ve got you out here today!” he remarked with forced cheerfulness.  Every Friday the rehab center holds a themed luncheon, like a BBQ or luau.  “Must be pizza day!”

A week earlier a nursing attendant had invited her to join “special lunch,” which she graciously declined.  That Friday, however, a nurse had simply breezed in, wheeled her to the patio, and planted her with patients suffering from dementia in various stages. Despite her celebrated conversational skills, my mother-in-law found the meal a challenge.

She could have demurred, of course, stating that she preferred meals in her room, but that would have violated her code of courtesy.  Reluctant to appear rude or unreasonably difficult, she endured the special lunch experience without causing a fuss, even though it wasn’t what she wanted to do.

It’s painful to picture my proud mother-in-law this way, decisions made “for her own good,” her options gradually diminished by the infirmities of age.  Yet she retains the luxury of choice, the ability to exercise preferences, and the authority to express them, should she elect to do so.

I wonder how often my son’s preferences go unheeded, or even recognized.  He has lived in structured care for almost nine years, an arrangement inherently prone to conformity, to routine.  Yet even when he lived at home I so frequently misunderstood him, or didn’t understand him at all.

How often must he be frustrated by the disorder that has dictated the whole course of his life, unable to express clearly what he’s yearning for, or who he knows himself to be?

A friend suggested recently that Daniel may simply not know any different, or even recognize what he is missing in the typical world.  Autism and its attendant constraints is all he’s ever known, after all.  He may be more content than I can possibly imagine.  Perhaps it is only me who is suffering the weight of his loss.

This argument isn’t new to me.  I’ve told myself the same thing countless times, willing myself to believe it true.  How much easier than imagining my son trapped in a functioning body and mind, yet unable to direct the events of his life, or follow the path of his choosing.

Of course I appreciate many of his frequent, obvious requests — pop, fries, Denny’s, car — but what more complicated emotions go unnoticed?  Does he recognize the vast range of experience beyond the stifling hold of autism, and ache for that world?  Or has he simply given up on being truly understood?

As he matures and our relationship changes, I tell myself to let go of these haunting questions, this chronic doubt; to accept the limitations of Daniel’s life, rejoicing in all he is capable of, the joy he demonstrates for the modest slice of life he has been allotted.

Can any parent truly do this, though?  Do any of us accept “good enough” for our children, or stop longing to know what lies in the deepest folds of their hearts?

Over time I’ve set aside certain unanswerable questions, stopped demanding an explanation for Daniel’s autism, which, if granted, would change nothing.  The ache to know my son is not so easily relinquished, though, this duty I feel to understand and give voice to the unarticulated longings he may have harbored for a lifetime.  Who will carry this torch, if not me?

Daniel’s behavior has long been the most telling barometer of his mood, and there is evidence now to suggest that he is indeed content.  He appears comfortable in his group home, well-treated by his caregivers, and satisfied with his living arrangement.

Other behaviors are more complicated, his well-chronicled soda obsession the most troublesome example.  Is this simply an inexplicable symptom of the disorder, or his desperate bid to control one small scrap of a life orchestrated on his behalf, a life he is screaming to escape?  I wonder if I’ll ever live peacefully without the answer, if I am failing him, again and again, by not knowing him as he deserves to be known.

I consider the frequent and meaningful contact my daughter and I share, yet I don’t know all there is to know about her; of course I don’t.  I can’t even state with certainty that she is happy; I can only judge by her temperament, the tenor of her words, trusting the relationship we’ve forged over 26 years.  Yet, like my mother-in-law, she has the benefit of language, the power to communicate as she chooses.

Daniel and I rely on more subtle indicators to understand one another, like his willingness to let me go at the end of my visits. Often he’ll hasten my departure with a vocal “Bye!,” having procured his extra soda, his sticker book; after a drive together, the Chili Peppers cranked loud and liberating; after he’s reached from his seat behind me to caress my shoulder, reassured that I’ve come back again.

Is this all the fulfillment he needs from his life?  From me?  Can it possibly be enough?

I want to dismiss my friend’s suggestion as a well-meant but simplistic explanation for something infinitely more complex. Conceding to her theory feels like a betrayal, adopting a convenient, more palatable view of my son’s life to soothe my own loss, my own conscience.

Mustn’t I question, though, if I’m stubbornly projecting my sorrow over Daniel’s circumstances onto him?  Is it just me, unsettled and aching, who is hungry for more, as my boy becomes a man?

And I acknowledge, too, that part of me craves the reassurance that he is happy — that both my children are happy — because that would make me happy.  Oh, yes, I want that certainty, a gentle easing of the relentless burden of love.

Yet slowly I’m recognizing that Daniel is, in fact, expressing himself, that he is telling me who he is, perhaps even typically.

At times he is the engaged, affectionate Daniel, laughing, relaxed, unhurried, who brushes my cheek for the simple warmth of connection; who will peruse a book by my side as we did for years when he lived at home.  Other visits are almost routine, a necessary interlude he endures for my benefit, anxious to return to his own agenda, like any 24-year-old.  Even if his agenda includes a sticker book with The Aristocats for accompaniment.

Perhaps my son has been telling me what he wants all along, but I’ve been too consumed by on my own agenda, my own habit of despair, to hear him.

I recall the moment my daughter told me her boyfriend was “the one,” understanding intuitively that she was happy, truly happy, even as her words left me breathless.  Is she ready to make this decision?  Does she understand the heartache that may lay in store?  Yet I realized then the depth of my faith in her, my trust in her to know her own mind.

Can I learn to do the same with my son?

There is no forgetting the disparity between the life he deserves and the life he has.  I can try, though, to view his experience with eyes unshrouded by loss, to listen for what he his telling me, free of the weight of unmet dreams.  He deserves this much from me.  He deserves to be recognized, to be known as he wants to be known.

What might he teach me, if I am willing to learn?

Ready, or not

Dan with stuffed animals 3

Every few months for the past ten years, Evie from Amvets calls to ask for a donation.  She is 97 years old, and has been soliciting for the veterans for over 30 years.  I never turn her down, even if I have to raid my husband’s closet to fill a bag.

Our interactions have grown through the years from confirmation of address and pickup time to lingering, affectionate chats.  I’ve learned, for instance, that she has five children and 12 grandchildren, one of whom graduated from University of Chicago last spring.  I don’t rush off the phone when Evie calls, no matter what I’m doing, mindful that each comforting connection may be our last.

Her call last Thursday was a welcome reprieve from the fruitless knot of writing I’ve been tangled in for weeks, work on an piece that has failed to come together despite dogged attempts to force its cohesion.  Although my donation bin out in the garage was empty, I told her I’d come up with something.

“Anything is welcome,” she affirmed, as she always does.  “Clothing, books.  Old toys — we can use anything.”

“Well, my children are 26 and 24,” I replied with a chuckle.  “So I don’t have too many toys around the house anymore.”

She continued her gentle coaxing, even though I’d already agreed to a donation. “Children’s books are good.  And stuffed animals are always appreciated.”

I thought of my son’s bedroom upstairs, the built-in shelves lining one wall still filled with plush animals of various species.  A lifelike lion sprawls regally across the twin bed; a five-foot giraffe gazes out the front window, a gift from my mother-in-law the last Christmas before Daniel left home.

Suddenly I was confiding in a woman I’ve never met, but who has been a fixture in my life for a decade.

“You know, Evie, my son has autism, and hasn’t lived with me for over eight years.  But his room is the same as it used to be.  It’s filled with stuffed animals I can’t bring myself to give away.”

In a rush, I continued, explaining that I’m a blogger, and had been trying when she called to write about grief, pain I can’t relinquish, nor find words adequate to explain.

“I don’t know what’s the matter with me, Evie,” I went on tearfully.  “He’s gone and I know he’s not coming home.  He’s never coming home but I’m still waiting.  I’m still waiting for it to be different.”  My voice broke.  “I can’t let go of him.  I can’t let go of the grief.”

Evie replied without hesitation.  “Of course you can’t,” she declared.  “You carried him.  He’s a part of you.  He’ll always be a part of you.”

She told me then of the baby she’d lost in pregnancy, when in her ninth month she contracted measles.  “I recovered but the baby couldn’t fight it,” she explained, her quavering voice steeped in remembered regret.  “I never got over that, either, not completely.  You never do.”

We talked for some time, about loss, what it takes and what it leaves behind.  “You are stronger for what you’ve gone through,” she observed, the experience of nearly a century lending new credence to the words.  “But you don’t ever let go of what you feel for your child.  He is always a part of you.”

In the weeks following Daniel’s move to a therapeutic residential school, I spent many nights curled in his bed, lost to grief, laden with treacherous, guilty relief that I could now relinquish the rigors of his care.  I knew I couldn’t do it anymore; none of us could. That didn’t ease the burden of failure, though, the awful acknowledgement that my best efforts weren’t enough.

Surrounded by the mementos of his life with me, I let the sorrow flow.  My eyes fell on photos of his special ed peers, his middle school diploma, a worn communication notebook from the fourth grade.  I held the photo of a dolphin leaping from the water at the Shedd Aquarium, a clipping from the Tribune he’d often pull from his nightstand and ask, hopefully, “Fish?”

His animal collection, amassed over 15 years, peered down at me.  The swivel-headed owl; the wolf, its head thrown back in a howl Daniel had learned to imitate; the spotted pony, a token of our joy at his first coherent word as a toddler, “Horse!”

How can I let go of these companions, tossed countless nights across his bed, before we turned off the light for sleep, Daniel calling each one by name?  “Bear!”  “Sheep!”  “Frog!”  Again and again I’d lob the soft toys until he was surrounded, giggling and gleeful and snug in their comfort; a treasured ritual of our uncommon life, a period of laughter and happiness, soothing whatever trials the day, now gone, had rendered.

It’s long been my plan to refit Daniel’s bedroom into an office, keeping his bed in place, while filling the shelves now housing his animals with the dozens of books stacked in piles on my own bedroom floor.  It would be a fitting space for me to write, to wrestle the ongoing themes that have shaped my life, to draw meaning from circumstances I still struggle to understand.

I can’t bring myself to do it, though, to symbolically sever a tie that has been loosening on its own, bit by bit, for years, to grant permanence to a truth I’ve tried to deny for half my lifetime.

If I’m honest, Daniel himself probably wouldn’t object, or even register the change to his old bedroom.  He once raced through the house on his visits home, darting into each room as though confirming the accuracy of his memories.  On his last visit, though, I had to coax him upstairs, where he studied the souvenirs of his childhood with mild interest, humoring me, it appeared, more than savoring a time now past.  He seems to recognize this as home, but a home he doesn’t live in any more.  And that’s okay with him.  He’s moving on, just as he should, as he must.

I think of Evie, holding the loss of her child over the span of 70 years.  I told her I’d try to choose an animal or two to donate this time, and she told me not to worry; I would do it when I was ready, if I am ever ready at all.

I don’t know when this will be so.  Part of me still clutches the slender reed of hope, that Daniel’s life will turn around, that autism hasn’t slammed the door completely; that our bright dreams of growth and improvement when he entered residential care will yet be realized, even after all these years.  I’m still waiting for another chance.  I still want him back with me again.

This is unlikely, irrational.  Futile, even.  I know this; I do.

Yet hope is relentless.  Perhaps that’s how it must be, too.

The Guardian of Positive Thinking

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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.


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.

Denny’s: A Love Story


Several years ago, the former pastor of the church I worked for sent me an email a few days before Christmas, and we exchanged brief updates on our lives and plans for the holidays.

Chris and his family were going skiing in Michigan the week before New Year’s; I reported that Daniel would be home for the day on Christmas Eve, and we had our own big plans: dining at Denny’s, his favorite restaurant.

Apparently our upcoming yuletide celebration sparked an idea for the Christmas Eve sermon Chris was pondering for the new church he’d founded in Chicago. He hoped to illustrate the Magi’s likely bewilderment upon finding the humble manger, when they had anticipated grander surroundings befitting an infant king. He wondered if my feelings about going to Denny’s for Christmas perhaps echoed those muted expectations.

As it happened, I’d just learned that a letter I’d sent to the Chicago Tribune would be published on the 26th, and I sent Chris a copy of the text. In it, I described my adjustment to simpler holiday traditions, the gradual lessening of expectations as autism changed our lives.

Chris’s sermon was well-received, he told me later, my story of Christmas at Denny’s the hook he’d been seeking to hold his message together.

For years when he lived with us, visits to Denny’s were a high point for my son. We loved it too, as the franchise near our home was never too crowded to find a booth in which to ensconce Daniel while he waited, impatiently, for the meal he always ordered.

I remember in particular a Saturday evening shortly after Daniel’s twelfth birthday. His sister Natalie had her own life by then, rarely stuck with her parents on a weekend except under the most dismal of social circumstances. So it was just the three of us, Daniel anchored between Andy and me in a spacious, semi-circular booth, his eyes glued to the swing door that led to the kitchen across the dining room. Despite his elation at being there, he remained watchful: the food had not yet arrived.

A paper kid’s placemat lay in front him, on which he sporadically scribbled, when prompted, with the worn crayons provided by management to keep children occupied until their meals were served.

There was no distracting Daniel, though. Repeated assurances that his food would come soon didn’t cut it. I sensed him trying to relax, to trust us and his own previous experience, that his coveted “Sampler Platter” with a side of fries was forthcoming. Yet every minute or so he’d ask again for his food, tapping the laminated menu for emphasis.

“Frah? Cheh? Chica?”

And at last the Sampler Platter appeared, a heaping, monochromatic mound of fried mozzarella sticks, chicken fingers and onion rings, augmented by a plate of French fries. As it emerged from the kitchen he sat straight in his seat, his gaze riveted on the server’s progress toward our table, reaching for a fry before she had set the plate in front of him.

In moments his mood changed as he let his guard down at last. Only then could he truly enjoy the experience, smiling and chuckling while plowing through each delicious, deep-fried morsel, gulping his soda between bites.

That night seems like a lifetime ago, when hope still glimmered for at least a semblance of the normal life we dreamed of for our son. We’d recently begun tentative exploration of the scant, unappealing choices offered by our state for adults with disabilities, advised by transition specialists that it was never too early to begin preparing for this possibility.

But in 2004 nothing yet had been etched in stone; we were several years from the bleak December day we moved Daniel to residential care. He was still young, adaptable, impressionable. Dramatic, life-altering change was still possible, with maturity, continued therapy, the eleventh-hour intercession of God. It was possible.

Wasn’t it?

I still see him that night, his anxious face reflecting concern carried, unspoken, for a lifetime; that his simple request, finally discerned among so many unarticulated, misunderstood desires, would yet be denied him.

And once the food came, his worry allayed, he relished his modest treat, a meal of his choosing, oblivious to the world beyond the walls of the restaurant: the world of sports and video games, of roughhousing with peers or movies with fledgling boys whose voices were changing, a world of first, tentative contact with girls, a world of moving forward.

Is this what life holds for my son, I thought, the bright spot of his days eating at Denny’s with his parents on a Saturday night? This isn’t forever; it simply can’t be. This can’t be what God has in mind for my son, my beautiful, bright child. There must be more for him one day…

I didn’t realize that one day even Denny’s would be out of reach, that the disorder that limited his focus to a platter of fried food would render even that pleasure unattainable.

It’s been a year and a half since we took Daniel into a restaurant, even a fast food venue. Past incidents of upset and aggression haunt me. I don’t care if he hurts me; I’ve survived that before. I fear him hurting another, an unsuspecting stranger, standing in the way of the obsessions that seem to drive him now where food and beverage are concerned.

The team at his group home have taken him into eateries for over a year, McDonalds, Panera, Olive Garden. We’ve joined them there, amazed and encouraged by Daniel’s demonstration of acceptable behavior when monitored by professional caregivers. His case manager hasn’t encouraged us to try this ourselves, however, cautioning that Daniel must learn new patterns, breaking rituals and expectations formed over years of parent-child interaction.

Yet increasingly these last few months, I knew we needed to try. Andy and I chose mid-morning last Friday to give it a go.

We stopped at a Denny’s a few miles from Daniel’s group home before picking him up, finding it more crowded than the one back home. A few booths were unoccupied, however, and I asked the manager to hold one for 20 minutes until we returned with our autistic son. He didn’t seem particularly enthusiastic, but a booth remained vacant when we returned. Flanking him on either side, Andy’s finger hooked in Daniel’s belt loop, we walked quickly through the parking lot and into the waiting booth.

We must have looked odd, hustling our 6’1’’ son through the restaurant. Andy suggested I relax just a bit, that we needn’t behave like prison wardens escorting a convict to his cell. My heart pounded, though, the tension I intended to conceal thrumming off me in waves, the limitless calamities Denny’s held in store streaming like ticker tape through my mind.

Our booth ran parallel to the galley where orders were dispensed and the soda fountains were housed. Daniel craned his neck to get a better view, and I flashed on the image of him leaping over the partition, a maneuver of which he is entirely capable.

“I can’t believe it’s come to this,” I remarked mournfully, once we’d settled, a sticker book replacing the kid’s placemat on the table now. Andy remained calm, though, despite my anxiety, despite Daniel’s repeated demands for pop and restless gestures toward the kitchen. He covered my hand reassuringly. “Relax, hon. We’re doing fine.”

And then the beloved Sampler Platter arrived, complete with a side of fries. And Daniel relaxed, just as he used to do, wolfing down his food in customary fashion before we could change our minds. By the end of the meal he was beaming, giggling, encouraging our tickles, just as he did as a boy.

It was a tense outing. But it was a beginning, a return to a pleasure once enjoyed.

My son’s life now bears little resemblance to the life once hoped for, yet I recognize that those hopes, those expectations, were my own. I wish more than anything that I knew what Daniel hopes for, what dreams he holds dear, what experience he longs for.

Yet he remembers Denny’s. It holds meaning for reasons I may never fully understand. But he still loves it there.

Would he have been just as happy with his caregiver by his side? Maybe.

I think he remembers, though, that this experience, this treat, is part of our life, together.