group home – Good Marching

by Kristen - May 29, 2017May 31, 2017

Hopefully

Years ago, a friend of mine and her husband took their young son for surgery to correct a pectus excavatum, or “concave sternum.” The condition wasn’t life threatening, but was noticeable and would likely worsen as he aged, interfering with sports or other physical activity. He was about seven years old at the time.

The surgery involved a thin, steel rod — a knife, really — being inserted from the side of the chest, and pushed carefully behind the sternum to “pop” it out into place. It was considered a routine procedure.

Sooner than expected, the surgeon appeared in the waiting room where my friend sat anxiously with her husband.

“We have a problem,” the doctor reported grimly. The steel rod had accidentally nicked their son’s heart. He was bleeding internally.

“But we think we can fix this,” the surgeon went on, and began explaining the correction they would attempt.

Stunned, my friend’s husband interrupted. “Wait. Wait. Did I hear you correctly? Did you say you think you can fix this?”

The surgeon looked him in the eye and somberly replied. “Yes. We think we can.”

*****

I used to say that the difference between my experience with my daughter and that of my son was that while I understood that any calamity could befall my daughter — she could get hit by a bus tomorrow — there remained a reasonable expectation that that would not happen. It has never been so with Daniel. Autism swept “reasonable” out of our lives. Yet for years I sought reassurance that his life would, eventually, turn out ok, would merge onto a normal path, even, if you can imagine, that he’d be the miracle child who overcame the disorder.

I thought I’d reached a point of acceptance that such assurances are not to be, even believing I could live without them, that I’d adjusted to the constant ebb and flow of his life. I realize now that I haven’t reached that place after all.

Several months ago my son’s group home manager, Kristen, regretfully informed me that Daniel could no longer be safely cared for at his current residence, the home we’ve loved, where he’s seemed to flourish for two and a half years. They felt they had no choice but to give the obligatory “30-day notice” that a new placement for our son was necessary.

This shouldn’t have come as the blow it did. There had been incidents, serious ones, during the last few months. In February, Daniel’s beverage obsession drove him to drink windshield wiper fluid he’d spotted in a neighbor’s garage. He spent three days in the hospital undergoing dialysis to flush the toxin from his system. Just weeks later, he eloped to another neighbor’s house, barged through their front door, and began guzzling from a gallon of milk in their refrigerator.

I knew about these episodes, even recognized uneasily that they were escalating. Despite his challenges, however, we’ve been happy with the overall quality of his life, the attention he receives, grateful for the opportunities he’s had to experience at least some of the larger world. He enjoys a unique, hard-won bond with his primary caregiver. It’s been the best place Daniel has lived for years.

Yet in retrospect I wonder if I’d been intentionally blind, unable to face the inevitable consequences of behaviors we’ve struggled for years to understand, desperate for a break from the relentless worry of parenting a severely autistic child. Distracted, too, by the demands of running for re-election for my job as township clerk, perhaps I could handle only so much stress at a time. Was the campaign my excuse to shut my eyes, for a few precious months, to the chronic challenges autism presents, even as my subconscious warned of a crisis, the culmination of fears I’ve harbored for his lifetime?

Kristen described an alternative they had in mind, a “one-on-one” placement ten minutes from his current home. The new house would be equipped with an electromagnetic locking system to prevent elopements, a feature unavailable in his current home, designated as an unlocked facility. His care team would transfer with him, lessening the impact of the move.

Everyone, she told me, agreed that this arrangement is what Daniel needs, for his own safety and that of others: his case supervisor at the managed care organization we work with to oversee his residential needs, their behaviorist, their nurse. Everyone except the contract department, which controls the flow of funding. They rejected it as too expensive, and directed the MCO to look elsewhere, to find another agency, another Adult Family Home, otherwise known as a group home, capable of managing Daniel.

“We want to keep Daniel with us,” Kristen told me. “His behaviors are difficult, and we don’t want him to end up in Southern.” She was referring to a multi-bed facility in southern Wisconsin, the kind of sprawling institution that’s the stuff of nightmares for parents like me.

I should have known these words were coming, words I told myself again and again to prepare for.

But I wasn’t prepared. I wasn’t ready to learn that yet another living situation had failed, that his behavior was more than even this capable staff could handle, that we needed to start again.

I wasn’t ready to hear the word “institution” in relation to my son.

*****

That night I had to attend a campaign function featuring a national political figure, and set aside my panic over Daniel to interact with nearly a hundred jovial attendees. I don’t know how I did it, but it must have been effective; my emotional shut-down carried through the weekend. I didn’t — simply couldn’t — talk to anyone, not my closest friend or even my daughter, unable to face questions for which I had no answers, or probe a situation that left me breathless. Holding the knot of fear and despair inside my chest was easier than facing it, than acknowledging again the powerlessness I’ve so often experienced in the course of Daniel’s life.

My husband understood this. When I came home from work the following Tuesday he was on the phone, speaking to the supervisor of the managed care agency, trying to gather information on what came next, how we could fight the denial of the alternative our agency had offered. He was told emphatically that the proposed home was not an option, but that the MCO would begin a search for another placement for our son.

“Hopefully,” she added, “it will be an Adult Family Home.”

“What does that mean?” I asked frantically when Andy hung up the phone. “What does she mean, ‘hopefully’ an Adult Family Home? As opposed to what?”

He didn’t need to answer. I already knew.

*****

I’ve spent weeks reflecting on why that word crushed me as it did, why it evoked the opposite of its intention, that of encouragement, optimism, possibility. I remember the desolation that washed over me, the certainty that no matter the outcome of this latest challenge, this particular piece of shitty, that there would be more to come; that after all these years nothing has become easier, we are still battling a war we can’t win. We are still only at hopefully.

And hopefully isn’t enough where your child is concerned, yet that’s what we’ve been working with for years. Now my longstanding fear that we’d lose my beautiful, bright and loving son to an institution was an actual possibility. The shadowy menace held in the dark of my heart had taken shape, ready and waiting.

Autism is years of hopefullys, of fervent, desperate prayers that the next situation, or therapy, or medication, will make a difference, only to face again the inescapable truth that the disorder is lifelong. “Hopefully” had turned on me, and I hid in my insulated bubble of mute fear for weeks as the situation unfolded, paralyzed, unable to write, or even discuss it with family or friends.

It had beaten me. I was done.

Except we don’t get to be done when we’re parents.

*****

To explain the bureaucracy involved in the resolution of this crisis would take pages, and this blog is too long already. Suffice it to say that things got worse before they got better. The neighbors whose house Daniel had busted into back in March had called the police, and eventually the local newspaper. Articles were published calling my son’s actions a “home invasion,” which left the occupant “traumatized.” Readers commented online, including one who opined that people “like that” should not be allowed in the community but in institutions where they belong.

For several weeks it appeared that the only agency willing to accept our notorious son was a brand-new outfit in Fond du Lac, two hours further north, operating just one home, a dim, cramped, duplexed house with no fenced yard and owners comfortable with “restraint” when necessary.

It took two agonizing months, but in the end we got what we wanted. Andy tells me that I played it perfectly, breaking from my paralysis precisely when necessary to move the process toward our goal. I don’t know if that’s true, or if we were just lucky. The owner of our current agency reduced the service rate originally proposed, leaving the contract department no excuse to deny his placement in the alternative house. Daniel moved to his new, secure home a few days ago. He seems comfortable there, happy.

On that first awful night of Kristen’s call, Daniel’s father Jeff told me to hang in there. “Things always work out for Dan Man,” he reminded me. I don’t have such trust in a larger plan right now, unable to forget the fundamental truth that things didn’t work out so well for Daniel, that his life was royally screwed before he ever had a chance. I tell myself that I won’t be duped again.

A few weeks ago, though, Andy and I drove by the new house, which I’d toured but Andy hadn’t yet seen. It’s a tidy, light-filled home with a swing in the backyard. I can picture Daniel there, swaying gently as he blows his bubbles, shaded by the maple tree behind him, his aide Brittany by his side.

On our way back to the highway we passed a park where Daniel and I had shared a picnic two years ago, and without thinking I exclaimed, “Look! That’s where we came that first summer!” I laughed with exuberance. “Maybe, when things settle down, we can go there again…”

Hope remains resilient. Or so it seems.

My friends’ son survived the accident on the operating table, and is now a handsome, heathy 27-year-old.

by Kristen - October 14, 2015

Saying Yes

Years ago, while I worked for the church a block from my home, I’d sometimes bring my son along when he had a day off school. His wonderful sitter was unavailable only on the Jewish High Holidays, so fortunately this didn’t happen very often.

My boss, the church pastor Chris Coon, didn’t mind, or never told me if he did. A typical kid Daniel’s age could stay home unsupervised, but Chris understood that wasn’t an option for my 13-year-old with autism. He was fine with Daniel hanging out in the nursery across the hall from my office, examining the trove of books and toys stowed in colorful bins, while I hustled through the most pressing tasks before his patience wore thin.

Walking down the sidewalk to the church one such day, I explained to Daniel that we’d have lunch at Dear Franks as soon as I finished working. He endorsed this idea by gesturing over his shoulder in the direction of the popular hot dog shop a few blocks away.

“Hot dog?” he verified, and I happily concurred. “Yes, hot dog! We’ll get a hot dog soon!”

We’d been settled in for just a few minutes when Daniel crossed the hall from the nursery to confirm the plan.

“Hot dog?” he repeated, planting himself in front of my desk.

“Yes, buddy, we’ll have hot dogs as soon as I’m done.” Reassured, he returned to the nursery.

A few minutes later he was back, ambivalence creasing his brow.

“Burger?” he asked dubiously.

“Well, sure, you can have a burger,” I replied. “Whatever you want.” Satisfied, he returned to the nursery once more.

A minute later he was rounding my desk and hovering over my chair.

“Hot dog?” he asked, his eyes boring into mine for emphasis.

“Yes, a hot dog’s fine,” I responded, repressing a sigh. “You can have whatever you’d like.” I gave him a piece of candy from the jar on my desk. “You can have a hot dog or a burger. Fries, too!” Mollified, he went back to the nursery where he remained for 90 seconds.

“Burger?”

We volleyed this way for 45 minutes, until Chris came out of his adjoining office and stood behind my computer monitor. We must have been driving him crazy.

“I don’t know how you do it,” he observed honestly. “You’re incredibly patient.”

Ruefully, I explained that these exchanges were so commonplace that they seemed entirely normal by now. Sending off one last email, I called it a day, and Daniel and I walked back down the sidewalk toward the hot dog stand.

Halfway there he stopped in his tracks and seized my arm.

“Chicken?”

*****

Ten years later Daniel and I sat at the kitchen table in his group home, eating the fajitas I’d picked up at Chipotle. As usual, he polished off his diet Coke in no time, and pointed to my cup.

“No, Dan, this one’s mine,” I told him. “You drank yours already, remember?”

My repeated assurances that he’d have another drink at eight o’clock, his scheduled soda time, did little to assuage his desire for mine, as I finished my own meal and stuffed the remains in the bag.

“Pop?” he asked every 30 seconds or so.

Every 30 seconds or so I told him no.

Switching tactics, he began pointing to the driveway. For years I’d stash a soda in a cooler in my car, his treat for the ride during my visits. He hasn’t forgotten.

I told him no half a dozen times.

After lunch he sat in his bedroom, temporarily distracted by the sticker book I’d brought for him, naming, impatiently, various animals and objects as I pointed to them.

We examined a few puzzles he enjoys on his iPad. I asked him about a T-shirt he’d selected at the Renaissance Faire. He showed me the new pair of gym shoes he’d picked out at Sports Authority.

Every minute or so he pointed to the hallway and asked me for “car.”

I told him no again and again.

His agitation mounting, we moved to the patio so Daniel could blow bubbles. He pointed again toward the driveway.

“Let’s hang out here, Daniel,” I replied brightly. “Show me your backyard!”

He unscrewed the top of his bubble dispenser and hurled its contents to the grass, clenching his hands in front of his face in rage.

“OK, Dan, no more bubbles today,” his one-on-one aide, Brittany, called from the backdoor. Daniel turned to me and asked plaintively, “Buh buh?”

Knowing I must support her authority, and the consequence he’d brought on himself, I told him no once more.

*****

For eight years my visits have meant reassurance that I’m still in Daniel’s life, but also the modest treats he craves: sticker books, chocolate covered pretzels, the blasted, coveted soda, his obsession for which shows no signs of stopping. His case manager advises modeling a new kind of relationship, transcending the tangible offerings I use to demonstrate my affection, and letting go of routines honed over years to find a fresh connection as mother and son.

Changing Daniel’s expectations of me, though, seems almost impossible sometimes. I simply don’t know how to do it.

We sat in the living room following the outburst in the yard, Daniel resigned, it seemed, to disappointment.

“It’s hard to tell him no all the time,” I remarked dolefully. His aide nodded in understanding. Brittany’s affection for my son is obvious even as she enforces the rules his team has established.

“I can’t imagine how it feels for him,” I went on, “to be denied again and again, when he wants so little from me.” I paused, fighting to control my voice. “Just once I’d like to tell him yes.”

Brittany murmured consolingly.

“I mean, I get it,” I continued, unsure what I was even trying to express. “He must be desperate to exert control, when so much in his life is determined for him.” My voice trailed off uncertainly. “I know he’s happy until he sees me and starts remembering… I know he’s happy most of the time — ”

From her seat in the kitchen, the other staff member on duty that day suddenly chimed in.

“Some people just need structure,” she pointed out matter-of-factly.

I stared at her, fumbling for an appropriate response.

“Well, duh, lady,” came to mind. “Why do you think he’s living here with you instead of at home where he belongs?”

How to explain that my despair in that moment had nothing to do with what my son needs, but everything to do with the emotion those needs prevoke?

“You don’t know my son as I do,” I thought defensively, “and you certainly don’t love him as I have since the day he was born.”

These discouraging visits make me question whether I should be heeding my son’s new team at all, continuing to follow their lead as my heart screams otherwise. At the same time I’m wracked with self-doubt, asking, in my darkest moments, where my love has taken us. My mother’s heart ultimately failed to provide what he needs to live safely and productively, after all, the structure that makes his experiences now possible. Who am I to question the professionals who have succeeded in showing him a broader world, a world in which I am a mere visitor?

*****

There is no black and white with autism, nor in our shifting reactions to its far-reaching effects. It’s not so cut and dried, mired here in ambiguity, the chronic, desperate search for what is best for our children, stumbling our way through the fallout of this hideous, inscrutable disorder.

I’m learning, though. My role is changing, but I’ll always be his mother, whatever growing pains we are experiencing now. Outside Daniel’s group home we manage fairly well, when I join him and his aide at a restaurant, or wave to him, smiling at his joy, as he swims at the sports complex nearby.

I am part of his new life in these venues, rather than a reminder of the life we used to share. That’s where he needs me now.

But I’m aiming for the day we can simply walk down a sidewalk again, eager for a hot dog, or a burger, or a chicken sandwich.

The day when I can say yes once more.

by Kristen - August 5, 2015August 5, 2015

What I Have

Considering how mundane it was, the photo I posted on Facebook received a gratifying number of “likes.” Just the two of us at a picnic table on a summer day, Daniel wearing the unnatural grin he invariably supplies when told to smile.

By social media standards, life with my son won’t win any awards for excitement or variety. We have few adventures to chronicle, no photos of thrill-packed vacations, sports triumphs or covetable jobs over which to humblebrag. Our interactions are more modest affairs, and ever more predictable.

My friends are sensitive to Daniel’s challenges, though, and supportive of my longing to connect with him after the nearly eight years he’s lived away from home. Their likes and kind comments mean a lot to me, and I recognize that their acknowledgment is one of the reasons I post photos of us at all.

I wonder sometimes if I’m actually seeking encouragement, a kind of validation that these unremarkable visits with my son are indeed worthwhile, that their value exceeds my own longing for something more. Because I feel more like a spectator than the woman once at the center of his world.

In my lowest moments, I question my relevance to Daniel’s life now that he’s a young man, cared for so efficiently by a team specifically trained to address his needs, the behaviors that rendered my care for him obsolete.

I was told to expect a change in our relationship when Daniel moved to this group home eight months ago, a shift in our interactions now that I’m no longer steward of his care, freed from those demands to explore a more satisfying connection as he enters adulthood.

As he’s been out of my care for years, however, this prediction never quite rang true, and I’m beginning to doubt it will ever apply to the two of us. More than ever before I feel I’ve lost my footing as his mother, this part-time role I’ve been playing since Daniel was just 15.

Or maybe I can’t accept that the path beneath my feet may be the one we’ll be traveling from now on.

The scripts for our visits seem to be written before I arrive, and I brace in advance for the ache of resignation which follows me home. I know how these visits will unfold, week after week, the joy of seeing my son tempered by longing for the deeper involvement that’s been missing for months. Crossing into Wisconsin on that dazzling summer morning, the caption for the photo I’d later post to Facebook had already formed in my mind, clear as storm cloud: Picnic with Daniel on a beautiful day. It’s not enough. But it’s what I have.

*****

We met at a local park, and sat together while Daniel tore through the sticker book I’d brought him, affixing the familiar images in their slots as he’s done hundreds of times before. I stroked his arm and caressed his summer-short hair, deflecting as best I could his repeated requests for the soda stashed in my car, his treat for after lunch. His obsessions have intensified over the last few years, and his associations of me, what he counts on when I come, are rigidly defined. There is so little I can give him now. I don’t know how to break the cycle we are enmeshed in, how to change the tenor of our engagement without breaking his heart.

Perhaps I should have tried taking a walk, just the two of us, free of the eyes and ears of the aide who accompanies him wherever he goes, even on my visits. It’s been months since I’ve been alone with my son. The compulsive behaviors we are working to modify are too unpredictable to trust managing on my own, seem to be triggered, in fact, by my presence. Old patterns are difficult to break with autism. Memories of losing control of my son remain, vivid, haunting and formidable.

Yet time with him has come to feel like mandated, supervised visitation, the structure in place to help him dictating the terms of our relationship. I miss time alone with him, privacy as I mother him the only way I can: tender, murmured endearments meant only for him, cuddles and hugs that leave me self-conscious when witnessed by caregivers who never knew my son as a boy, when he was, first and foremost, my child.

I’m ashamed to admit that I crave freedom from the support he so desperately needs, the scrutiny of onlookers I sense weighing my effectiveness with this special young man who used to be my own. The very competency of the staff rakes the embers of my doubt, which has smoldered for years; the guilt that my own care for him was ultimately not enough. I am an interloper, an addendum to the life he is leading now, a life fuller and richer than he’s experienced in years.

I don’t know how to reconcile this sense of loss derived from what should be celebrated, the normal development of my child as he learns a new life apart from me. The bond I’ve been longing to recapture since the day he left home is swaying now under the weight of distance, of time lost long ago.

There is a history I’m still reaching for, written through physical proximity, through countless days of bathing and dressing and snuggling and tickling, of high fives and blown bubbles and brushed hair, of tied shoes and trimmed fingernails, of tedious car rides and leisurely walks on autumn afternoons. A history composed as I fixed meals under his curious eye, enjoyed in companionable silence or giggling banter, unfolding from our seats in the bleachers while we clapped in delight as the dolphins he once loved leapt and splashed at the Shedd Aquarium.

It’s a rhythm scored over years speaking a language without words, weathering together the outbursts and tantrums and setbacks, savoring the small triumphs of our uncommon life together. While resting side by side against his headboard, books or flashcards across our knees; as night after night I tossed his stuffed animals onto the bed as he called for them, laughing, by name: “Zebra!” “Cow!” “Wolf!” It was written by the warmth of my hand across his forehead as I kissed him once more, and once more again, before turning off the light. “Good night, sweet Daniel. I love you, Daniel, my sweet, beautiful boy.”

*****

It would be simpler, wouldn’t it, to accept that he’s moved naturally into a new phase of life, and embrace with gratitude all the good that life offers now, the opportunities the framework of this life provides? Perhaps he is more content than I can possibly understand, taking all he needs from me and our unexceptional visits, the routine we’ve established, the mild experiences of my Facebook posts.

But I believe his life will not be complete without me, and the rest of his family, at the core of it, and I can’t rest until I find that place again. The procedural support is in place to help shift his behavior in a more positive, independent direction. But he needs the emotional nourishment of his mother, too; of all of us who have loved him without question for a lifetime, whose love transcends all circumstance.

I’m not ready to concede that this is enough, that superficial visits are as good as it gets with my son, or our relationship to one another. No line will be drawn beneath Daniel’s life, or my experience with him. I have a role that only I can play, even as I stumble and gasp and bungle my lines. Letting go of my dreams for him has never been an option. Acquiescence to a lesser experience would weaken my fight for him, my advocacy, my hope.

That hope is painful sometimes. But it’s what I have.

by Kristen - January 21, 2015January 21, 2015

New Light

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

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

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

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

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

****

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 - September 8, 2014

Worth It

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.