Beating at the Darkness

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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.

Worth It

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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.

Sad but True

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An editor once told me that an essay I’d written was just too sad to be inspirational.

I hadn’t really been aiming to inspire, but simply tell the truth as I knew it.  And sometimes the truth is, undeniably, sad.

The truth hit me full in the face today when I got an email from my son’s group home director.  I knew a message like it would come eventually, but still was not prepared for it.

It’s been three months since Daniel moved to his new home in Wisconsin, after aging out of the residential school he attended for six years. It wasn’t easy to find this new home, for a variety of reasons, foremost being Daniel’s behavioral history, which includes aggression and biting.  Finding qualified facilities for people like my son is challenging, to say the least.

Most of the time Daniel is easy going, engaged, blowing his bubbles or working a sticker book, enjoying the DVDs he knows by heart.  He laughs often, loves music and riding in the car.  He has adjusted well to his new home, and is usually compliant and easily occupied.

But he can also turn inexplicably aggressive, and sometimes violent.  While infrequent, his outbursts are sudden, rage-full, threatening.  He’ll lash out, actively seeking to hurt the people caring for him or getting in the way of what he wants.  He is capable of becoming a person almost unrecognizable from the bright and beautiful young man I love so deeply.

It is incredibly sad to type these words about my son, and know that they are true.

Two weeks ago Daniel began attending a day program for disabled adults four mornings a week.  We knew instituting this new regimen wouldn’t be simple, as, like many autistic persons, Daniel does not typically embrace changes in routine.  Nevertheless, we were anxious for him to begin structured, purposeful activity, however modest, rather than spend day after day within the walls of his group home.

The email I received today detailed two incidents which occurred at the new program in the last few days.  In the first, Daniel grabbed a pot of coffee and splashed the hot liquid across his legs while trying to gulp some down before it was taken from him. The next day he became agitated, without apparent cause, and lunged at his caregiver, then bit the peer who tried to intervene, breaking the skin and necessitating an obligatory trip to the hospital.

Caregiver, peer and Daniel are fine, I’m told, and the group home manager remains confident that Daniel will adjust to the day program with time.

But it is incredibly sad that after 20 years I still don’t understand why my son behaves the way he does, and I am still so powerless to help him.

For three months friends have asked me how Daniel is doing, how the move has worked out.  I want so much to tell them that it’s great, it’s beautiful, a perfect fit after such a long and difficult search.  I feel almost obligated to provide a positive report to these caring people: that after all the turmoil they’ve borne witness to, our efforts finally paid off, and I can offer a happy ending in repayment for their support.  Perhaps, too, by saying it to them I can convince myself that it’s true.  But I know by now that the truth is more complicated than that.

How could I tell my friends that it’s working well, that everything is fine, when I knew the day would come when it wouldn’t be fine, that the honeymoon would be over; and the next time they ask I’ll sense their letdown, their confusion at my dispirited, uncertain answer, which may be the only true answer I can give?  Because Daniel’s insidious, baffling behaviors moved to his new home with him.

I don’t want to tell my friends that I’ve been waiting for the other shoe to drop, dreading the call or email detailing a set-back, further limiting his options, his chance to lead a productive, meaningful life.  I can’t admit my fear that perhaps we made a mistake, that maybe we didn’t pick the right place after all, even as I know our options were so limited as to make “picking” the right place practically moot.  I don’t want to confess how scared I am that he’ll never come around, never grow out of these behaviors which so restrict his potential, his future, his relationship to us and the rest of the world.

I don’t know how to tell them how unbearably sad it is to know that he is miserable when he lashes out, and I live too far away to comfort him; that this can’t possibly be what God intended for my son, and yet it is happening, it happens again and again and we don’t know why or how to stop it.

When I visit him now our outings are dictated by his unpredictability, the bleak certainty that I can no longer control this six-foot man-child, if he becomes without warning a person frightening even to me.  We are confined to drives in the safety of my Jeep, roaming the streets of a town I don’t know, a world away from all I once dreamed for him.

And how can I express, in the wake of his abhorrent behavior, that I share moments with my son that make up for it all, that remind me of who he really is, that there is more to him than the aggression, which in its enormity eclipses the loving and sensitive young man I know him to be?

Will it mean anything to those who have witnessed his rage if I recount the moments when he is joyful and laughing, rocking back and forth in his seat as we drive, windows down and air blowing clean across our faces, listening to a Red Hot Chili Peppers song again and again, volume cranked high?  Would anyone believe that he understands me when I tell him, “Here it comes, Daniel!”, that he laughs then, as the bass solo pulses through our bodies, washing away for a few blessed moments the anguish that autism, in its awful duplicity, has inflicted, and I have Daniel again, my real Daniel, my true and beautiful son?

Because that is the truth, as well.  And I hold that truth against my heart, when it is breaking.