by Kristen -

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 -

Who’ll Stop the Rain

Rain

In my experience, few endeavors have less effect than telling a worrier not to worry, as the years I’ve lost to fruitless anxiety demonstrate.  Apparently, I needn’t worry that I’m alone, however, as Googling the word produces 391,000,000 hits.  We are a world of worriers.

Yet as my friend, the writer Robert Hughes, points out, “I think everybody can say with Montaigne, ‘My life has been full of terrible misfortunes most of which never happened.’”

Concurring with this assessment, though, seldom prevents me from clouding days with one worry or another, my list of what ifs and potential calamities far-reaching and often irrational.  It’s become such a part of me I hardly consider trying to change.

A recent bout with my most familiar nemesis led me to consider, though: could I at least try to embrace a less fatalistic approach, to consider the wisdom of annoying but accurate platitudes like, “Worry is like walking around with an umbrella waiting for it to rain”?

Such an apt simile, after all.  Rain, and the damage it may cause, is one of my most visceral fears.  It’s unstoppable, beyond human control, potentially ruinous.  The menacing possibilities my imagination can conjure are boundless where rain is concerned.  As a co-worker unwittingly reinforced, “Water always finds a way in!”

My phobia reached its peak in the spring of 2014, following a grueling winter of near-record cold and snowfall, the back of which every Chicagoan longed to see.  Everyone except me, that is.  The promise of spring promised me only the melting of the massive snowbanks directly into the basement of my charming but porous 90-year-old home.  I worried about the watery consequences incessantly, for weeks on end.

Given how infrequently we’ve had more than a few trickles in the 14 years we’ve lived here, even I recognized this obsession as absurd.  I couldn’t stop myself, though.  The leaky episodes we had experienced kept me watchful, wary, filled with dread whenever rain was foretold.

That spring was lost to me, my anxiety gathering like the whopping, snow-melting storm forecasters gleefully predicted for a Thursday in early April.  I’d prepared as best I could: old towels lined trouble spots, rags and buckets were near to hand.  Home from work after the day-long deluge, I braced myself at the top of the basement stairs, Odysseus facing a hostile, enemy-strewn shore.

“Be strong, saith my heart;” I recited bravely, “I am a soldier; I have seen worse sights than this.”

*****

We all have fears, real and imagined, some of which we allow to cripple us. My friend Marla Davishoff, a talented therapist, assures me I’m not alone in this particular fear; many people, women especially, feel anxiety around water and their homes. Perhaps it involves the instinct to protect our nests, our flocks.  I can scarcely recall my temperament before adulthood brought responsibility beyond my own narrow concerns, beyond caring for myself alone.  Have I really been this nervous my whole life, this irrational about problems that, while tiresome, are most certainly not the end of the world?  Whatever damage our house may sustain, we have the resources to fix it, however inconvenient that may be.  Yet when the familiar panic creeps in, I chide myself in vain: “What’s the worst that can happen?”  Plenty, my anxious mind replies.

Such frivolous worry, of course, is also just a tad self-centric, cowardly, even.  How selfish to waste so much energy on foolish fears as society reels with more sobering concerns, while I, in fact, have more serious concerns myself.  Real, life-altering concerns.

For years I thought controlling at least my physical environment would help quell the chaos of autism, the daily upset and fear, the desperate need to help my son without knowing how.  I’ve justified, too, my phobias as necessary stand-ins for the vast intangibles that have shrouded our lives since Daniel’s diagnosis, staving off a flood of legitimate, long-term worry too serious and heartbreaking to absorb.  Worry needs an outlet somewhere; how much easier to shoot rabidly at identifiable targets than the elusive, mercurial enemy that has shaped my son’s life, and my own?

For me, and many parents like me, diagnosis of profound disability in our children skews our image of a rational, predictable world.  Life “working out for the best” becomes a naive, unjustified banality, rhetoric like “What’s the worst that can happen?” scant reassurance when your child’s future, his whole existence, is at stake.

I know powerlessness now, that circumstances exist beyond my control despite pleas and prayers and promises; that love alone is not healer enough; that some losses will never be redeemed.  Autism stole Daniel’s life the day he was born, the fullness of normal experience he should have had lost to fate, or chance, or an arbitrary bestowing I’ll never comprehend.

He appears content these days.  In many ways he is thriving.  But I know all that he is missing.  I can’t abandon the worry over what his heart holds, the unexpressed dreams he may harbor that will never be fulfilled.  He is blessed with health and energy and curiosity, a family that loves him, yet he faces a lifetime of inequitable challenges through no fault of his own.  This truth is as sure as rain.  It will always find a way in.  Yet I keep trying to stem the tide.

I wonder if I’m on the right track about any of this, if these insights are really just a convoluted excuse for behavior that’s merely habitual, perversely comforting even as it cripples me.  Have the years of doubt and concern, of questions and faltering, imperfect solutions, warped me so indelibly that I no longer know how to live without worry?

I guess I needn’t worry over the why.  The possibility of change, my fledgling yearning for it and the hard work it involves, is concern enough for now.

******

As you may have guessed, our basement didn’t flood two years ago.  A few rogue rivulets escaped my towel barriers, easily wiped away.  I wasted that whole spring for nothing, fretting away moment after moment, hour after hour, until a whole season had passed, over an event that never occurred.

A few months ago we had the drain tiles in our basement replaced.  It was an expensive undertaking, postponed for years until my daughter was through graduate school and Daniel’s residential placement was, at least for now, secure.  Just after Christmas we added a backup sump pump system, to protect us even during power failures.  Marla optimistically predicts that these improvements will lay my water worries to rest, once and for all.

I was huddled on our screened porch a few weeks ago while the four cats we care for ate the breakfast I provide them each morning.  Andy’s allergies prevent us from bringing them inside, but our porch has been their home base for six years, and we’ve made it their sanctuary.

Sipping my coffee, I reflected that it will be months, perhaps years, before I descend the basement stairs without trepidation at what might be seeping across the floor, but I’ll be working on it, one step at a time.

This hopeful moment was punctuated by a piece of ceiling plaster falling on my head.

The porch roof seems to have developed a weak spot.

My time in the deep end over this new threat passed more quickly than you might imagine, more in proportion to the relative gravity of the problem.  A roofer was called.  A temporary fix was installed, protecting our porch and our cats, until we can address the issue come spring.

I’ve got this.

Not yet a soldier, but standing fast.

This time, at least.

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.