by Kristen -

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.

“Stoar!”

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.

by Kristen -

Bond in My Pocket

Daniel Craig as Bond

I have rather a thing for the actor Daniel Craig, specifically as he portrays James Bond, and I’d venture to guess I’m not alone.

What woman can deny the appeal of a man so intriguing, so in control, so incredibly capable of handling whatever bad thing may barrel her way, like a unpinned grenade?  Throw in the vulnerability Daniel Craig brings to the world’s coolest spy?  You’ve got the ultimate package, right there.

I suppose such impervious women exist, but I’m not one of them, and I’ve not hidden the fact since I first saw the new 007 brandishing his Walther P99 in Casino Royale.  (Yes, it’s true: I Googled that.)

My husband Andy doesn’t mind my infatuation, as it tends to surface only in the weeks preceding the release of a new Bond film. I imagine he has his own celebrity crushes as well, but has the sense I lack to keep such thoughts to himself, Lara Croft: Tomb Raider notwithstanding.

I would have preferred, however, for him not to learn, a few years back, the extent of my obsession in quite the way he did.

Having wasted the better part of an hour trolling the internet for photos of the actor, I figured, why not print off a few for future perusal?  These choice exemplars I then hid in the pocket of an old down coat I wear when feeding our porch cats or digging around in the garage.

This act of foolishness coincided with the purchase of my first iPhone, and Andy’s admonishments to look after the pricey device. Duly warned, I embarked on my weekly visit to Daniel the next day, stopping first at Whole Foods for a bagel for the road.

Daniel was in a fine mood, and I dug in my purse for my new camera-equipped phone.  It wasn’t there.  Upending my bag’s contents on the floor proved fruitless, as did a frantic search of my car.  Well done, Kristen.  This would never have happened to Moneypenny.

Using the phone at Daniel’s group home, I called my daughter, instructing her to drop everything and contact Whole Foods to see if they’d found the phone there.  Having done all I could do for the moment, I returned to Illinois, phoneless, photoless, feckless.

Meanwhile, Andy returned from work to find Natalie’s scrawled note on the kitchen counter: “Whole Foods — Mom’s phone??” Dismayed, he launched a preemptive house-wide search, through sofa cushions, kitchen cabinets, drawers, seldom-used purses on the back of my closet door.  And the pockets of every coat I own.

Including my old down jacket.

I can’t remember where the phone eventually turned up, a detail eclipsed by my humiliation at the discovery of my secret Bond stash by the grinning, thoroughly amused man to whom I’ve been married for 16 years today.

It wasn’t easy for Andy to make a commitment to marriage after 42 years of bachelorhood.  It took years for me to fully understand his fears, his doubt at his ability to successfully assume the responsibilities inherent in legally binding himself to another person, and her two children, as well.

His devotion was never in question, as he demonstrated his love for all three of us in ways both tangible and implied.  I didn’t understand his concerns as I should have; I saw only the man I knew him to be: one of insight and integrity, of quiet humility and strength.

His wariness was painful, though, as he faltered toward the covenant I valued, as a woman and the mother of young children. My ego was bruised; I wanted to be a catch he was eager to snag, not an appendage reluctantly assumed at the altar.  I wanted to be Helen of Troy.

Marriage after 40, I learned, is challenging.  We both had expectations, dreams already lost and mourned.  But we’ve made it so far.

And I’ve come to realize that his reluctance proved more meaningful than heedless enthusiasm ever could have done.  He was afraid to get married, but did it anyway.  He made one of the most difficult decisions of his life, for me.

Not the fairy tale l’d concocted, certainly.  Yet those have a way of tarnishing over time.  And while the years since our eventual union have offered more challenges than even he dreaded, he remains.

Not Daniel Craig, perhaps.  But, Andy, you’re my James Bond in all the ways that matter.

You didn’t bail when a financial planner told us years ago to expect to pay privately for Daniel’s longterm care, that 80 grand a year for the rest of his life was a conservative guess.

You painted Natalie’s bedroom three times in the house you didn’t want to buy in the first place to achieve the perfect shade of yellow, even though no one could tell the difference but me.

You laid across my hospital bed after my unexpected surgery, cradling me while I cried out in pain.  You recognized the bond I shared with my father, although you met him just briefly before he died.  You held my grief as my mother was lost, inch by inch, to Alzheimer’s; you were the one to wake me gently in the night, to tell me my brother had called, and our mother was gone.

You schlepped to music recitals and theater performances, to therapy sessions and IEPs, from elementary to high school, to schools miles away from home.  You’ve dragged boxes and dressers and mattresses into dorm rooms and first apartments; you’ve soothed disappointments and set backs, the first tender ache of a broken heart.

Your arrival home in the evenings brought Daniel running from his bubbles and videos, laughing and joyous, to greet you.  You taught him to wipe his face with a napkin, and knotted his tie before eighth grade graduation.

It was you who patiently coaxed him through the door of his school in Wisconsin on that fraught, fretful day eight years ago, so he’d be entering his new home on his own terms.

You taught Natalie to drive when I was too freaked to do so; you sat up in those late hours when I was spent for the day, guiding her through the torments of adolescence; you shouldered the cost of graduate school so she wouldn’t be saddled with debt as she entered adulthood.

You held fast during that ghastly meeting with the psycho attorney, when the stakes were so dreadfully high, and endured my screaming in rage and bitterness and fear all the way home from Milwaukee.

You consoled me after a friend I adored turned on me, crushing my spirit and confidence, rueful that you hadn’t been there to protect me from her scorn.

Strapped to a stretcher in the back of an ambulance after our car crash in Wisconsin, you implored paramedics to look after your wife and stepson, because in his agitation, our son might hurt me.

You’ve submitted to innumerable, spontaneous readings of prose I happen to find fascinating, usually during a crucial movie sequence; you’ve helped clarify my thoughts when I couldn’t understand them myself, much less express them coherently in words.

You’ve never once in 19 years said a negative word about my first husband, and have built a solid, generous relationship with him, and his wife; you attended the baptism of their twins, spending most of the ceremony in the parking lot with an uncooperative Daniel, because you understood that Dan should be there, as part of the family.

You told me that as stepfather, you will always defer to my parental authority, but have borne every thorny problem of parenthood by my side.

You assumed a responsibility you never thought you wanted, and have lived up to it every day.  You became a man you didn’t intend to become, and are man enough to admit that you are grateful for having done so.  And as my partner, you’ve made me more than I was before.

For years, when I’ve been scared, you’ve told me, “Relax, sweetheart.  You’re golden.  You’re in God’s pocket.”

I have my doubts about that sometimes.  But no matter.

I’ve got you in mine.  I’ve got you.

ka25

by Kristen -

Bon Appetit and Goodbye

Pancakes

I wrote this essay seven and a half years ago, several months after moving my son to a residential school an hour and a half from home.  Reading it today, I’m surprised at its lighthearted tone, when my heart had so recently broken.  I understand now my need to fend off a loss so deep I couldn’t fully acknowledge it all at once.  Nevertheless, I like this piece, which reflects my feelings around the changes in our family at that time.  I hope you’ll enjoy it, too.  —Kristen 

 

By the time I learned to cook it was too late.  And by learning to cook I mean finding the right cookbook, brimming with simple but enticing recipes for the culinarily unimaginative, no trip to Foodstuffs required.  After years recycling the same six or seven meals week after ho-hum week, “Weeknight Meals for Busy Moms” seemed like a godsend.

Except I’m not really a mom anymore, not in the sense that has defined me for so long.  My son no longer lives with me, and my daughter has one foot out the door, leaving for college in less than six months.  My husband’s schedule is erratic, bringing him home some evenings as late at 9 p.m.

Which leaves me alone in the kitchen, a slate of brand new family recipes on tap, my family no longer at the table.

“Wait!  Wait!” I want to cry.  “I’ve got it together now!  June Cleaver is in the house!”

But time waits for no mom.  I recognize the irony of finally mastering the art of the family meal just as my family scatters to the winds, symbolic of the loss I feel around the changes of the last three months, and those that are yet to come.

It wasn’t as if I didn’t try.  But the vaguely held images of well-balanced meals prepared with unhurried competence, then shared at a cozy table by my serene and typical family, never fully (or even partially, actually) materialized in real life.  More often I recall slapping together meals of rotini with a side of orange slices, or scrambled eggs and toast, if I hadn’t forgotten to buy bread.

And my family isn’t all that easy to please, either.  As a boy, my son displayed disdain for most every food offering (even those in my famous Top Five) only satisfying my frenetic attempts to nourish him with an occasional cup of lo-cal lemon yogurt.  During adolescence, when his growing appetite placed him in the “clean your plate and then some” club, my daughter’s willingness to eat virtually anything with calories diminished to the alarming but typical proportions of a teenage girl.

My husband, meanwhile, eats nothing containing butter, sour cream, cream cheese, cheese sauce, mayonnaise, hollandaise, béarnaise or any other coating, while alternately clamoring for more steamed vegetables and asking why I didn’t buy cookies at Costco.

So many of my half-formed ideas of what “family” means have reluctantly shifted since I had a family of my own.  The demands of parenting a truly atypical child were greater than I could have dreamed possible, and what I’d considered “normal” and “healthy” and “secure” flew out the window in the face of my son’s disability.

Mealtimes were just one of a slew of ordinary experiences impeded by his unique needs.  Eating in restaurants, family vacations, doctor visits, attending a movie or strolling the zoo; Sunday school, music recitals, a walk in the neighborhood, buying an ice cream cone – each formative and familial experience I had envisioned for my children took on new and often forbidding overtones in the world of autism.

My son’s move almost three months ago to a residential school for developmentally disabled children should have brought a welcome normalcy to our home, an easing of the uncertainly his volatility lent our lives.  And perhaps this will come.  For now, though, his absence is a loss impossible to imagine healing with time.

I still reach for his evening medications when I glance at the clock at 7:45, and feel the stab of emptiness as I pass his room on my way to bed.  The constant struggle of those last grueling months isn’t so vivid right now; instead, I recall the tenderness of his hand against my face as we read the same books, night after night, as the day wound down.

I long now to recapture something as it slips away and changes shape again.  That normal family around the dinner table could be mine, I tell myself, if I just had another chance.  I’d do it right this time.  Yet I recognize that I’m holding onto to an ideal that is merely that, a fantasy painfully relinquished as I did what was necessary to keep my family whole, however unconventionally that evolved.  The home front I forged as mother is not the one I intended, but it is ours and ours alone.

Today I remember the conversations my daughter and I shared over another round of “Chicken with Bread Crumbs” or “Pasta Salad with Italian Dressing,” watching her grow from hesitant girl to confident young woman in the process.

Or my joy at the sound of my son’s voice last fall, clear and decisive, asking for a second helping of one of my dinnertime masterpieces.

“Pancake!” he cried cheerfully.  “Pancake!”

Pancakes it is.

by Kristen -

New Light

Image 3 - Version 3

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.

****

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.

****

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.

****

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.

by Kristen -

A Treat to Remember

Daniel vampire

If I could do my life over, I’d be a party planner.

There are few things I enjoy more than preparing a celebration, like the Halloween party for children with special needs I led for our Township last weekend.  I spent weeks arranging details for crafts, games, decorations and snacks so the event would run with ease.  Thanks to a host of generous volunteers, I think it did.

Celebrations with my own family, however, didn’t always pan out as planned.  The blueprints for gaiety unrolled in my mind were rarely executed as intended by my little boy with autism.  He had his own ideas.

Take birthdays, for example.  I strove to make them festive occasions in our household, involving favorite meals, helium balloons, and a musical birthday plate for the guest of honor.

Daniel, however, was unimpressed.  One year he actually developed a physical aversion to birthday cake.  He wanted no part of the homemade confections brought forth for other family members, shoving his slice away with the back of his wrist, lest the offending substance touch his bare hand.

Undeterred, I concocted for his own birthday a dessert comprised solely of Daniel-approved foods.  When the big moment came, he regarded the lopsided, cake-shaped mass of whipped cream and Oreos with a striking lack of enthusiasm, but deigned to blow out the candles and accept a slab without bolting from the table in horror.

I nearly wept with joy.

Halloween, on the other hand, was one celebration I could count on to at least resemble the normal-family ideal I aimed for when my children were young.

Daniel learned quickly that orange decorations meant a trip to Didier Farms, where he opted without fuss for the first pumpkin he saw.  He enjoyed the Jack-o-lantern creation process, squeezing the slick pulp between his fingers, planting the votives firming inside the hollowed shells, then sitting outside, arms crossed and focused, to study the flickering candlelight winking from the pumpkins aligned by the door.

He tolerated every costume I devised for him, ranging from baby cow to cowboy, green M&M to white, floaty ghost.  He expressed no preferences, but never balked at my selections, even the regrettable Mr. Potato Head ensemble of 1997, a choice, bitterly scorned by my daughter, which I’ll never live down if she has anything to say about it.

Daniel didn’t mind it, though.  He marched out the door, clutching his plastic pumpkin with enviable nonchalance, touring the neighborhood with his dad and sister, who swallowed her shame and behaved with typical loyalty to her little brother.

I see them still, their eager, costumed figures heading down the sidewalk as dusk settled in, Natalie holding Daniel’s hand protectively in her own.

“Say ‘trick or treat,’ Daniel,” she coaxed as each door was opened.  “‘Trick or treat!’”  Sometimes he’d utter a proximation of the phrase, but more often just grabbed for the goods, Natalie issuing thanks for both of them before hurrying to the next house in line.

Described later by their father Jeff, who guided them while I manned our own front door, these scenes are as vivid as if I’d been standing beside them: the warm glow of light spilling from doorways onto their expectant faces, Daniel reaching without fanfare into the offered bowl, Natalie gently coaching him, their unique bond deepening, all on its own.

I couldn’t have drawn a more perfect picture if I tried.

In the blink of an eye Natalie was spending Halloween with friends, and her and Daniel’s step-father assumed trick or treat duty in the new neighborhood we moved to when Dan was nine.

He wasn’t a little boy anymore, but I wasn’t ready to pare down his Halloween experience, even if he showed no great interest in participating one way or another.  Of course, I usually claimed the cushy job, parked at home by the front door while dispatching Andy to herd Daniel up and down the street.

This become a bit challenging as Daniel grew older, his abrupt behavior more startling, at age eleven or twelve, to neighbors unfamiliar with his autism.  People were sensitive to Daniel’s quirks, though, recognizing his differentness and treating him with tender, respectful indulgence.  Few begrudged his mute grabs for candy or lack of thanks, which we supplied on his behalf.

But in just a few years trick or treating held less appeal for Daniel.  Having graduated to a more sophisticated vampire costume, he was nonetheless ready to head home after just a few houses, content to pass the evening peering over my shoulder at the children crowding our doorstep, now and then holding the candy bowl himself as careful selections were made.

He was growing out of the Halloween of his childhood, just like his typical peers.  I only needed to follow his lead.

I knew what he was missing, though: the “Halloween Hoopla” extravaganza held each year by our park district; the haunted house teens from our church navigated together, shrieking in feigned terror; the noisy packs of adolescent boys, jostling down the sidewalk, eyes open for girls, collecting the loot they pretended not to care about anymore.

These rites of passage were not right for my son, but I mourned their loss just the same.

Daniel had his own game plan, though.  He was satisfied with the handfuls of candy he swiped behind my back; the roasted pumpkins seeds he surprised me by enjoying, crisp and salty and warm from the oven; our talking candy bowl with the green motion sensing hand that lunged forward as he reached, giggling, for another Tootsie Pop.

He didn’t regret the pages lost from my Halloween blueprint.  He didn’t even know they’d been drawn, and that was all right with him.  And so, in time, it became all right with me.

My kids have been out of the house for several years, but I still decorate it for Halloween.  It reminds me of those simple, unguarded days, the celebrations that ran smoothly, better than I could have planned.

While publicizing last week’s Halloween party and recruiting volunteers, I often told people that I wish there’d been a party like this available when my son was young, a lower-key event where differences don’t matter, and kids and parents can relax and enjoy the celebration in a setting tailored for their needs.

Yet this isn’t precisely true.

I’m thrilled to lead this event each year, providing an experience that seems to be appreciated by the community.  But I wouldn’t change a thing about my own children’s Halloween experiences.

Those memories are pretty much perfect, just as they are.

Dan M&M