by Kristen -

Beating at the Darkness

dark_forest-t2

I read a lot of crime novels.  If you’re not a fan of the genre, you might be surprised at how evocative its language can be, how often a sentence or phrase cuts right to the heart of things.

Take this passage from Irish novelist John Connolly’s most recent book, “The Wolf in Winter.”  He’s describing the attitude of one serial killer toward another pair of killers, who are actually heroes in the series: “The Collector admired their single-mindedness, their focus… none of the fruitless beating at the darkness that come from those who have grief without power, and anger without an object.”

See what I mean?  Hits right where you live.  Or where I lived, anyway; where I lived for years.

*****

I was encouraged when my son began Kindergarten at the elementary school just blocks from our home.  Although in a classroom for students with learning, physical and developmental disabilities, his placement at our home school signaled a step away from the whole special services system he’d been enrolled in since he was two, that menacing world still incomprehensible to me in relation to my son.

We adored Ellie, his young teacher.  She was bright, nurturing, naturally fostering the affection we knew Daniel capable of.  Assigned to her class again for first grade, his tolerance of a regular school setting buoyed my hope that autism hadn’t completely stolen his future, that he still had a chance, somehow, at a normal life.

Two aides assisted in the classroom, a laid-back woman about thirty, and a less demonstrative woman in her mid-fifties, who seemed experienced in all manner of students with disabilities.

As it happened, she hadn’t experienced a student like my son.

*****

As first grade unfolded, Daniel’s behavior became more turbulent, outbursts and tantrums soon the norm, the communication notebook Ellie sent home each day reporting “upsets” or “incidences” more regularly as the months passed.  We met often and spoke on the phone, concurring that Daniel’s language deficit fueled his frustration, and framed exercises to help him express himself, searching for clues to his disruptive, unsettling behavior.  Together, we were hopeful, upbeat, determined to unlock the mystery of my cherished little boy.

Alone in the dark moments, though, I despaired of ever truly knowing Daniel at all.  My beautiful son was more an enigma than ever, moving on schedule from toddler to personhood, yet becoming a person I didn’t understand.  Autism and its origin remained inscrutable, while its consequences grew more familiar with each passing day.

I picked up the call at my desk on an April afternoon near the end of the school day.  By then I was divorced and working full-time at a Presbyterian church a half-mile from home.  Returning to work hadn’t been part of my plan then, but neither was so much of what had transpired in the last several years.  Still mourning my father’s death the winter before, I was running on overdrive, colored by grief, and doubt, by simmering, impotent fury.

“Kristen, I think you better come over here,” the young aide from Daniel’s classroom advised, her mellow voice tinged with concern.  “Dan’s fine, but he had a rough afternoon.”

“What happened?” I asked, alarm and dread spiking painfully in my chest.

“Well, he — he had a bad day,” she replied cryptically.  “And he wet his pants, and, well, he’s a mess.”

Ten minutes later I was in the classroom, cuddling my son as Ellie described his escalating moodiness through the afternoon: the back-arching and floor-flopping, the inconsolable fits of crying, the final wild outburst when he bit the elder classroom aide, bruising and breaking the skin on the back of her hand.

My face burned with trepidation and dismay; I sensed what was coming before Ellie spoke the next words.

“I think we have to start considering another placement,” she continued gently.  “I don’t know if we’re equipped for Daniel here.”

*****

I hardly recall getting home, arranging for Natalie to stay with our neighbors after school, or nestling Daniel in front of a video.  I remember only rocking in place on my screened porch, shoulders hunched as I dragged on a furtive cigarette, the future in all its threatening uncertainty crashing in from all sides.

“Now what?” I whispered again and again.  “Now what?”

I learned the immediate answer to that question the next day as I sat in the principal’s office, invited, I thought, to discuss safeguards the team might employ to avoid another aggressive episode in the short term.

The aide Daniel had bitten, I was relieved to hear, had been treated by her personal physician, with no stitches necessary or follow-up likely.  Understandably, though, she was shaken, and had vowed not to work with my son again, a reaction that while hurtful, in my fragile state of mind seemed justified.  Bites, I knew from personal experience, hurt like a bitch, and losing control of an aggressive child is traumatic.

I expressed repeatedly my remorse at Daniel’s behavior, an attitude the principal hastened to quell, covering my hand with her own.  No one blamed me, or Daniel, for the incident, she insisted.  Everyone involved recognized that these episodes came with the territory.

However, the principal went on, taking a breath, on the advice of her doctor, the aide was requesting that Daniel be given a blood test.

She wanted my seven-year-old son tested for HIV.

The words didn’t quite sink in.  I gaped at the principal as she continued, reluctant, it seemed, to convey the message she was compelled by her position to deliver.

“She knows he doesn’t have anything,” she murmured apologetically.  “She’d just feel better, being sure.”

I stared at her, dumbfounded.

Five years of despair converged in that moment, deflecting all rational thought.  Five years of analyses and treatments, of therapies and exercises and approaches with scant, disheartening result.  Five years of pleading for unknowable answers to empty, futile questions, of desperate promises to an unwavering God; five years of battle with an unfathomable enemy, an enemy that, despite all our efforts, was winning.

I snatched back my hand and leaned forward, my body trembling with rage.

“I don’t give a rat’s ass about making her ‘feel better,’” I hissed.  “She was supposed to be protecting my son, not the other way around!  Natalie knows how to avoid being bitten by her brother and she’s only nine years old.  Don’t you dare talk to me about making her feel better!”

*****

I understood powerlessness then, the lost flailing in the dark, the stifling weight of anger ill defined.  I knew the bitter truth even as I was lashing out, heaving the burden of my grief on the only person at hand: there was no one to blame for what was happening to my son, no reason to which I could fasten my rage and my awful, consuming despair.  To accept the true answer, the impassive certainty that life isn’t fair, was almost unbearable; to recognize that however loudly I screamed, the world would simply shrug in reply, and go on.

As painful chapters often do, that one served a purpose.  From the wreckage of those days I found direction, and learned to channel the energy of my outrage more productively; to set aside the haunting questions whose answers, if they exist, will do nothing to change what we’re living with now.  The issues of why and how will always be with me, but I exist with them more peacefully now.

I still probe the darkness now and then, but my son needs my presence here.

I need to live in the light.

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

by Kristen -

Taking the Long Road

 

Forest Road, Doug Bradley

Photo:  Doug Bradley

Last week I attended a local forum on intellectual and developmental disabilities, co-hosted by State Senator Julie Morrison, the woman who set me on the path to my current job in local government.

Four years ago, when serving as West Deerfield Township Supervisor, Julie asked me to join a committee on a grant program the township was initiating to help its disabled residents gain better access to the community.  Participation on that committee eventually led to my appointment, then election, as Town Clerk, a position I’ve enjoyed for over three years.

While at the forum to represent the Township and its grant program, I was also there as a parent.  It was an interesting perspective.

The forum focused on housing, employment, and helping people with disabilities achieve their individual goals, providing information on programs and services available to assist in these areas.

Most of the information I’ve heard before, many times, having attended countless similar workshops and presentations over the past 20 years.  Listening to a social worker summarize of the maze of federal and state resources  — and knowing first hand the red tape involved in securing those resources — it occurred to me that repeated exposure to these explanations is necessary before they sink in and begin making sense to parents who are bewildered and overwhelmed by the whole confusing process.  At least that’s the way it worked for me.

It took several years just to wrap my head around the unwelcome reality that my son would one day require such services.  Even as I started absorbing bits of information, acronyms like “PUNS” and “CILA” and “SSI”, there remained a self-protective film of denial across my consciousness, allowing me to cling to the fantasy that one day he’d grow past the need for these frightening, complicated systems, and it would all simply go away.

Slowly, fitfully, though, we accepted that Daniel would most likely require residential care some day, and began researching his options more than a dozen years ago.  As my friends in the special needs community understand all too well, finding and securing crucial funding and services for disabled persons is a long and complicated journey requiring expert, experienced guidance, and very often legal counsel.

In retrospect, we were fortunate that Daniel’s level of disability was profound enough to secure the services he needed without protracted, expensive litigation.  Even with extensive modifications to the special education program within our home school, our district acknowledged that they could not adequately or safely educate him.  Just over three months after his first day of sophomore year in high school, Daniel moved to a residential school for developmentally disabled children and teens in Wisconsin.

Fortunate, of course, is a relative term.  While I’d accepted that one day Daniel would need a higher level of care than we could provide at home, I didn’t expect that day to come when he was just 15.  I imagined his transition as a young adult, when he’d be “ready” to leave home and begin building a semblance of independent life.

But those are regrets for another blog.

What I didn’t anticipate last week was how painful listening to descriptions of various programs available to disabled people now would be.  As the parent of a child who desperately needs such services, it should have been a positive, encouraging experience.

And in many ways it was.  It was gratifying to learn of the job training, skill building programs now available to foster independence, the innovative housing opportunities emerging in response to the fast-growing population of adults who need various levels of assistance to live their fullest lives.

As the parent of a profoundly disabled young adult, I was inspired by the room full of professionals dedicated to enhancing the lives of people like my son, and the other parents who share my quest for the best lives for their children.

But as the parent of my profoundly disabled young adult, it also broke my heart, knowing that at his current level of ability, most all of the programs described — even those painstakingly facilitated, adapted, and governed by one-on-one care — remain beyond his reach.

There was a time when these programs were what I aimed for: modified, humbler experiences, but still within the “second-best” realm of what my friend David Royko so aptly calls “hopes adjusted downward.”

These days, however, his behaviors bar him from participating in even the most carefully controlled community involvement, a far cry from the programs described, which offer meaningful work and social opportunities.  As grateful as I am for the strides being made on behalf of people like my son, my heart is heavy that he cannot, at this stage, participate in them.

I learned I wasn’t alone in feeling this way.  During the presentations I took a break for a few minutes, and met in the lobby an acquaintance whose nephew is affected by the kind of severe autism that affects my son.  Her eyes were brimming as she confessed that she couldn’t take hearing it all, aware that her nephew would most likely never partake in the programs described so glowingly, so positively, yet still beyond the constraints of his brand of autism.

Perhaps selfishly, I was comforted to know I wasn’t alone in my meloncholy.

Ironically, my favorite presenter at the forum was the man who’d squashed my hope of bringing Daniel back closer to home when he turned 22 and entered the adult disabilities system.  The intake coordinator for a major network of Chicago-area residential facilities, we’d consulted him over two years ago, before we made the difficult decision to keep Daniel in Wisconsin, where services outpace those in Illinois two to one.

He told us the truth two years ago: that despite Daniel’s demonstrated need for residential housing, and thus the likelihood of his receiving some of the scant funding available from the state of Illinois, he’d be at the bottom of the list of potential clients when petitioning facilities for his placement.  His behavioral history would always precede him.  With waiting lists years long, the most desired facilities can pick and choose their clients, and few would be eager to pick my son.

It was crushing news to hear.  Yet it was the beginning of a painful but necessary process of letting go, relinquishing a dream I’d held dear for six years, and looking beyond to what was available now.

Attending the seminar brought home again how deeply Daniel’s autism has impacted him, how limited his life remains even within the disabilities community.  But it also reminded me how far we’ve come.

Recalling those early days of despair, those frantic, panicked moments as I tried to absorb the onslaught of information and bureaucracy, of endless forms and questions and boxes to be checked, I’m able to appreciate that I’ve made it this far.  It’s not where I hoped to be, but the road still lays before me.

That’s the bad news, and the good news, as well.  The journey is far from over, but I pull strength from the miles I’ve already travelled.

It’s a long road, indeed.  But I’m not walking it alone.

 

For information on West Deerfield Township and its Accessibility Grant Program click here.

by Kristen -

Stolen Summer

Lost summer

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.

by Kristen -

Worth It

IMG_2782

My husband enjoys pointing out that I look more like my Uncle Bill every day, especially when I’m smiling.  Which wouldn’t be so bad, except Uncle Bill is 90.  Having my picture taken has become an exercise in self-consciousness.

My likeness to my uncle doesn’t bother my son, however.  I’m told by his caregivers that he asks for me every day, wanting to know when I’m coming to visit.  He’ll fetch a photo of me from his bedroom and tap my image to make sure he is understood.

“Mah?” he asks earnestly. “Mah?”

If only my visits these days even remotely resembled the outings I once hoped to provide him.  Instead, the obsessions governing his behavior make it almost impossible to bring Daniel safely into the community when I am alone to manage him.  His impulsivity, bolting, and tendency to grab what he wants, from anywhere or anyone, severely limit our participation in most public experiences.  Autism has dictated the whole course of his life, and now dictates our time together, as well.

We stick to the McDonald’s drive-through, eating in my car in the parking lot, safety locks engaged.  I drive through the rural hills outside town to spend time alone with him, and ask about his life away from me: his activities, his housemates, the meals he most enjoys.  I don’t really know if he’s listening.  He answers with an occasional “Yeah!” or alarmed “No!” if I suggest a new route, a different fast food outlet, a departure from our established routine.

Before long he’s itching to head back, anxious to stop at the gas station for the highlight our visit: selecting a soda from the cooler, which he’s allowed to drink once we’re back at his group home.  He’s ready for me to leave then, sometimes hastening my departure by waving his arm and instructing, “Bye!”

He seems content with this routine.  It appears enough for him just to see me, to receive my kisses and occasionally stroke my hand, reassured that I’ve come back again, his touchstone, his connection to the life we used to share.

I wish it were enough for me, that I could accept these rigidly defined encounters as what he needs from me right now, that his idea of happiness differs from my own.  I try to convince myself that if a soda from a gas station is enough for him, providing that small pleasure should be enough for me.

There are times I can hardly bear it.

I expressed this to his caregivers during my visit a few weeks ago.  I’d brought a pizza for lunch that day to escape the monotony of another meal in the car, and we talked while Daniel and his two housemates ate at the dining table.

“It’s disheartening,” I told the two women on duty at his group home, who I’ve gotten to know during the seven months since Daniel’s move there.  “I feel sick that this is all we share together, that I can’t do more for him, you know?”

They did know.  They face the same challenges when bringing Daniel into the community.  They’ve seen how tightly he clings to ritual, to my visits unfolding precisely the same way each week, perhaps giving him a sense of control when so much of his life is determined for him.

They don’t know the Daniel I remember, who once enjoyed a fuller, more varied experience.  They don’t know that we used to go to parks, and playgrounds, read books together or eat at Perkins without incident; that we’d found a small beach near his former school where he tossed sticks and pebbles across the water as he did when he was a boy.  They couldn’t imagine us strolling through Target, where Daniel chose snacks and sticker books and magazines, unburdened by the compulsions which now drive his waking hours.  They couldn’t fully understand my despair, the loss I feel at his shrinking experience, how week after week I dread confronting anew the reality of his limited, shallow world.

“Do you want us to go with you?” one of his caregivers, Danielle, suddenly offered.  “I mean, we could take the guys and get ice cream or something.  We’ll help you keep an eye on him.”

I considered Dan’s reaction to a break in our prescribed routine, the agitation it may cause, but decided it was worth a try.

We followed them to Frostie Freez, picking up cones in the drive-through, then met at a nearby park.  Disconcerted, Daniel asked repeatedly for “store,” but accepted my assurances that we’d hit the gas station after we had our cones.

We chose a picnic table near the jungle gym, keeping a watchful eye as Daniel spotted the large fountain drink sitting unattended while a father pushed his toddler on the swings.

“Don’t worry, Daniel,” I told him, stroking his arm and squeezing his hand.  “We’ll get a pop when we’re done with our ice cream.”

He plowed through his cone, and I entertained him with photos on my phone while the rest of the group finished their ice cream. After just 10 minutes he’d had enough, anxious for his gas station stop, the activity he’d been counting on.

Walking back toward our cars, though, I was elated.  We’d broken from routine, if only briefly.  Impulsively, I held my phone out to Danielle.  “Will you take our picture?”

I hugged my son around his waist, self-consciousness forgotten, smiling as Danielle snapped a picture, Dan grimacing slightly at the delay but trying to return my affection.

“C’mon, Dan!” the women called, as Daniel produced the cheesy grin he always supplies when told to smile.  “Give us a real smile!”  Danielle kept snapping, trying for a good shot of both of us, as Daniel shuffled his feet, bored with this sentimental journey and ready to move on.

Danielle fiddled with the preview function of my iPhone’s camera.  I let go of Dan and reached forward to examine the phone.

That was all it took.  Daniel was suddenly bolting full speed toward a picnic table 30 yards away, McDonald’s bags and cups spread across its surface.

The scene is scorched on my memory: three middle-aged women running in wild pursuit, knowing we’d be too late, me in flip flops, bulky canvas purse banging against my hip, all of us shouting with desperate futility, “Stop! Daniel! Daniel, stop!”

Danielle cried out in warning to the woman and young girl who watched our approach like deer in the headlights, frozen in puzzled horror as Daniel barreled straight for them: “Grab your food!”

It was over in seconds, frothy milkshake upended, landing with a splat at Daniel’s feet, most of the sticky liquid missing his mouth completely in his haste to consume it, the forbidden beverage, the temptation he may have withstood had I not wanted a photo to commemorate our successful divergence from routine.

I uploaded the pictures to my laptop when I got home.  Daniel looked anxious, torn, trying to roll with the experience but worried by the threat to his ritual.

All week I agonized.  Was forcing an experience I wanted for my son worth a near-catastrophe, another public humiliation?  If Daniel is happy with a trip to the gas station, why isn’t that enough for me?

The following week we stopped for his soda at the onset of our drive rather than on the way home.  He was more relaxed that way, laughing and rocking in his seat, cradling the coveted bottle on his lap, secure, able to more fully enjoy the ride.  It was a positive visit, a happy one.

I looked again at those photos yesterday, at my own image, glowing and smiling freely, joyous to be with my son, in whatever small moment we were allowed, however far it fell from what I dream for him.  The scene that followed does not negate the joy of that moment, the hope sown by reaching for something more.

I don’t know yet how to find the right experiences for my son, those which may bring greater fullness, and curiosity, and joy to his life now, as a young man.  But continuing to seek them is worth it to me.

It will always be worth it.