Cornered

Cornered

Among other things that irk me, drivers who fail to pull fully into their parking spaces, leaving their butt ends in the driving lane, annoy me to no end.

At the mall recently I encountered an all-star offender, nearly half an SUV hanging out of its allotted space, a prime spot just four slots back from the front of the lot.

Muttering, I steered around the vehicle, noting that the driver remained in his seat, talking, it appeared, on a cell phone.

After parking my own car, I cast a baleful glance his way as I walked toward the store, shaking my head and gesturing in “what the hell?” fashion as I passed.

Entering Macy’s, a stab of remorse at my peevishness made me turn back and glance at the car.  The driver was leaning out his door and looking back, as if just noticing his poor parking skills.

Then, with mounting dismay, I watched as he got out and began pushing the SUV forward, right hand on the steering wheel, knees bent with the effort of moving the car.

The car I now realized had stalled.

Mortified, I hurried to the third floor to buy the gift I’d gone to purchase.  I’d planned to take the package back to my car before an appointment at the Apple store, but hesitated, afraid the motorist I’d wrongly condemned would spot me as I returned.

Warily, I approached the glass doors and peeked out.  Man and car remained, joined now by a minivan parked nearby.  After transferring several items from the backseat of the stalled car, the man finally climbed into the minivan, and I waited for it to drive away so I could slink to my car unobserved.

They didn’t move.  Skulking by the door as customers came and went, I realized the man and his rescuer had settled in to wait for a tow truck.

And there I stood, frozen, too ashamed to approach my car, trapped by my own bad behavior.

This humiliating episode should logically segue into commentary on erroneous judgments, stories we’ve all heard about persons, often disabled, unfairly attacked when others jump to conclusions about behavior that to the casual observer is extreme or inappropriate.

In truth, though, I have not personally endured a truly terrible episode of judgment in relation to my disabled son, at least none that I’ve allowed myself to remember.  Sure, we’ve withstood sidelong, perplexed, or disapproving glances, startled comments here or there.  But Daniel’s autism is pronounced enough that most people soon discern that something beyond the norm is at work, that he is indeed “legitimately” disabled.

And if I’m honest, people rarely had the chance to point out my son’s inappropriate behavior.  I was too quick for that, heading off reproach with explanation before it began.

For years I carried my son’s disability ahead of me, preempting anticipated criticism before it could hurt either of us.  Actually, Daniel is insulated by the very disorder that makes him vulnerable.  But I couldn’t bear to have him misunderstood, deemed a brat or “behavior problem” when his issues went much deeper, were, in fact, beyond his control.  In public, my instinct to protect him kicked into overdrive, drawing a cloak of justification around his shoulders, shielding him from an insensitive world willing to indict my child along with autism’s distasteful side effects.

But I was acutely aware of how I imagined the world saw me, too: an ineffective, irresponsible mother, inadequate to the job I had longed for for years.  I knew in my heart that I was failing my son, and my daughter, the whole family structure I was supposed to have nurtured and shaped to perfection.

I feared society’s judgment, and wanted it to know it wasn’t my fault.

Can I admit this to myself?  Can I write this in this blog?  That at my most overwhelmed — lost and flailing and self-pitying — I offered up an excuse, an au courant disability to absolve me of who I’d become, to explain the wretched chaos of my world?

Because life was chaotic, chronically so.  Nothing had prepared me for the sea change autism brought to our lives, the grief and anger and guilt; the turbulent days and endless nights; the exhaustion and unbroken fear for Daniel’s future, the trauma it was inflicting on his sister.  As my son became an enigma I struggled to understand, I became a person I could barely tolerate, but felt powerless to change.

How much easier to seek absolution for my failings than do the hard work of modifying them; I was already working as hard as I could.  I wanted a pass, forgiveness for my shortcomings: my petulance with store clerks when my patience was shot; my anxiety, which imbued so many occasions; my isolation from friends whose “normal” children brought heartache and resentment; my stubborn unwillingness to accept this thing I could not change, even as I was assured by well-meaning friends that I’d been specially chosen by God to embrace it.

There’s a reason I’m like this, I wanted to scream.  This responsibility is devouring me, has reduced me to a snapping, cornered animal, fighting back the only way I know how.

I remember years ago asking a neighbor if she could pick up my daughter from a birthday party her daughter was also attending, dreading the ordeal of dragging Daniel into a noisy gymnastics center certain to provoke a scene.

She sighed pointedly before agreeing, and I recall bitching later to a friend, “Why couldn’t she have just done it cheerfully?”  Did she have any idea how onerous such a simple task would be for me, how easy she had it by comparison?  Couldn’t she see I was drowning here?

Why didn’t everyone understand that?

Harboring this attitude for years, of course, made me less tolerant myself, venting my accumulated angst at ill-placed, irrational targets.  Years of angry defensiveness is pretty exhausting.  And even in my self-centered misery I knew I wasn’t unique at all. Our world is awash with misfortune and heartbreak and setbacks, large and small.  I had it no worse than millions of people, and in ways too numerous to count, I had it better.

Acknowledging this truth, however, doesn’t prevent my anger from lashing out sideways at the wrong mark entirely.  It doesn’t stop me from being an ass in the mall parking lot.

While trying to examine this behavioral flaw I was blindsided.  My son’s case manager called recently to warn us that Daniel’s funding for one-on-one care is at risk.  He is doing so well in his new placement that the agency in control of funding thinks he no longer needs the personal aide assigned to him.

I was floored.  Of course he’s doing well; he finally has the resources he’s needed all along to do so.  It felt like hearing a doctor tell a patient with high blood pressure that since his condition is now under control, he no longer needs his medication.  Even worse, loss of this funding would mean Daniel’s expulsion from the new group home where he is flourishing: one-on-one care for 15 hours a day was a condition of their accepting him.

The panic came flooding back once more, the “now what?” alarm that’s been sounding since we learned the word autism, the crippling uncertainty we’ve lived with for years, but which has never lost its power to stun, to paralyze, to corner.

Honestly?  Acknowledging that I’m still responsible for my behavior regardless of the fear and difficulty I’m facing pisses me off all over again.  Oh, I’m much better than I used to be, no longer the self-conscious, brittle woman convinced the world has nothing more pressing at hand than to observe me with fascinated disdain.

Despite accepting long ago that my son’s autism will bring a lifelong series of challenges, though, each new instance triggers the fervid need to protect him that I’ve felt since he was a child.  I think I’ll always experience that snapping, cornered-animal defensiveness when it comes to his welfare.

But there are plenty of legitimate targets for my wrath.  Maybe, someday, I’ll learn to come out of my corner swinging at the right ones.

 

“Cornered” image by StocksbyAnna

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.

Totally Unacceptable

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A few weeks back my son had a follow-up appointment with the new psychiatrist he visited in May to consider medication changes that may help curb his erratic behavior.

I participated by phone this time, unable to attend the appointment near my son’s residence in Wisconsin.  I was anxious to hear the doctor’s opinion on the slight improvement Daniel’s shown in the bolting, aggression and beverage-stealing that so dramatically impact his life right now.

His group home director was a few minutes late in calling to patch me into the appointment, and I was beginning to worry that I had the time wrong when the phone rang in my hand.

“We had a little disturbance,” Steve informed me, his usual cool slightly ruffled.  “But all is fine now.”  Apparently, Daniel had demonstrated first-hand one of the behaviors we are trying to control, grabbing the McDonald’s coffee cup from atop the doctor’s desk the moment he entered his office.  It took a few minutes to restore order before Steve called me and the appointment got underway.

The doctor indicated cautious optimism that medication may help reduce Daniel’s impulsivity, and we agreed to wait another month to see how things progressed.

“I can’t guarantee anything, of course,” he went on, echoing the prognosis given by countless other doctors, therapists and behaviorists over the years.  “This may be a behavior he always exhibits.  We’ll just have to wait and see.”

What else is new? I wanted to ask, but instead thanked him, joking that at least he got to witness one of the very behaviors for which we were consulting him.  He didn’t reply, merely repeating that Steve should set up another appointment for six weeks hence.

I got the full scoop the next day.

“What really went down with the doctor’s coffee?” I asked Steve eagerly, reaching him by phone the following afternoon.

“Well, he wasn’t what you’d call pleased,” Steve replied.  Daniel had lunged straight for the doctor’s cup, wheeled around and began gulping, the coffee splashing across desk, chair and rug in the process.

Steve couldn’t help chuckling as he described the psychiatrist’s outrage that a patient under his care for stealing beverages had had the temerity to steal his own, despite Steve’s warning that the coffee, in full view on the desk, was at risk.

“These doctors need to see what it’s really like sometimes,” Steve opined, rather gleefully.  “It’s good for them to get a taste of the problems they’re treating.”

“Oh, man!  What did the doctor say?” I asked, my mortification at Daniel’s poor behavior vying shamefully with relief that I wasn’t present for the fall-out.

“Well, he jumped up, and sort of yelled, ‘This is totally unacceptable!  This is totally unacceptable!’”  Steve described how he’d immediately intervened, retrieving the cup, now empty, while his aide went in search of paper towels to wipe up the spills, which, mercifully, had avoided the doctor’s open laptop.

“I mean, I warned him,” Steve continued.  “He knew the drink obsession is one of Dan’s main issues, so it shouldn’t have come as a great surprise.”

“Oh, for God’s sake,” I replied, my initial embarrassment on Daniel’s behalf turning swiftly to anger.  “‘Totally unacceptable’?  Does he think we’re brining Daniel for treatment just for kicks?  That’s like a pediatrician being pissed when a kid cries while getting a vaccination.  What an idiot!”

Steve agreed, while acknowledging that he’s had good results with this doctor in the past, that his “desk-side” manner didn’t necessarily match his competence as a psychiatrist.

“Doesn’t bother me a bit,” Steve went on.  “It doesn’t hurt for him to come down from his ivory tower now and then and see what his patients are really dealing with.”

But it bothered me a bit.  Quite a bit, actually.  I couldn’t get the doctor’s choice of words out of my head.

“Totally unacceptable.”

Oh, really?  You’re coming a little late to the party, doc.

Because I know from “totally unacceptable.”

“Totally unacceptable” is the dismal care my state provides its most vulnerable citizens, making it necessary for my son to live an hour and a half away from the people who love him.

“Totally unacceptable” is that Daniel’s autism is so pervasive he needs 24-hour care, his every action monitored and guided by caregivers.

“Totally unacceptable” is his struggle just to make his needs known, his frustration at our inability to understand him compounded daily for 22 years.

“Totally unacceptable” is his not being able to hang with his father’s 10-year-old twins, coaching his little bother’s baseball team, or rooting for his sister’s cheerleading squad; “totally unacceptable” is his absence when his big sister received her Master’s degree in June.

“Totally unacceptable” is his zero chance of getting married, raising children or finding fulfillment in a career of his choosing, living in a restricted, sheltered environment rather than pursuing life independently, making his own decisions, earning his own victories and learning to heal his heartbreaks.

“Totally unacceptable” is that my son’s quality of life is dictated by a disorder bestowed through no fault of his own, that his greatest joy these days is being allowed to select his own soda from a gas station mini mart when I visit him on the weekend.

“Totally unacceptable” is the fact that despite my profound love for him, I cannot make him well, cannot erase the effects of autism which have cost him in every way imaginable.

“Totally unacceptable” is that my young, handsome, loving son needs a psychiatrist at all, that this disorder will make him forever dependent on others, including doctors whose years of schooling don’t mean they have a clue about the reality of their patients’ lives.

So are we clear, doctor?  I’ve got the “totally unacceptable” thing covered.

Well.

Okay, then.

The other day I was reading a quote to my husband, attributed to a nationally known motivational speaker.  I scoffed at his simplistic approach to “acceptance”:  “Change the changeable, accept the unchangeable, and remove yourself from the unacceptable.”

“Another fool,” I remarked scornfully.  “‘Remove yourself’?  There are some unacceptables that you can’t just remove yourself from.”

“Well,” my husband gently countered, “he probably means that that is what we have to strive for.  We have to try to let go, to not let those things keep hurting us.”

As occasionally happens, my husband was right.  Of course he was.  But I still have a ways to go in this regard.  Incidents like this doctor’s priggish reaction set me back even after years of struggle coming to terms with Daniel’s disability, to accept that which, to me, is unacceptable.

We’ll keep trying to find whatever may help Daniel control his behavior, and live his fullest life possible.  And I’ll keep trying to reconcile the disparity at war in my own head:  that while I find the circumstances of Daniel’s life unacceptable, I accept him unconditionally.  I can’t imagine my life without him.

Maybe I’ll participate by phone again, though, next time my son has an appointment with his psychiatrist.

Face to face, I might do something unacceptable.

My Own Exclusive Crisis

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Photo:  Robert Stirrett

I’m sort of a sucker for Dr. Phil.  His column in a recent issue of O: the Oprah Magazine was, I’m certain, written just for me:

“One of the greatest limitations we face as human beings is that we look at the world from our own subjective perspective–especially in situations that directly involve us. Anytime there’s something personal at stake, you’ve got a built-in bias, right?”

Right.

When the initial shock of my son’s diagnosis began to ebb, and the profound ramifications of his autism sank in, I became what you might call “a person with a built-in bias.”

That is to say, “Nobody had it as bad as me.”

Yes.  I realize how self-centered, arrogant, and small-minded that sounds.  I was all those things and worse.  I couldn’t see beyond my own anguish and pain to recognize that far greater pain existed anywhere else I might care to look: my own neighborhood, our country, the universe.

But I didn’t look.  For a while I simply couldn’t.  My son’s life was more important to me than the vast suffering of the world or the political tenor of our country or my neighbor’s mother having breast cancer.  Other parents’ problems with their kids paled in comparison to what I was going through with my son.

The whole world became my own, exclusive crisis, and I was stuck there, grieving and angry with my feet dug in.  Woe to the fool who dared breach my hell, bearing his own inconsequential concerns.

One morning when Daniel was three I tried attending a meeting of the women’s Bible study I’d been part of for several years.  It was held at the church where I’d been baptized and had attended my whole life.  Our group met in the church nursery so our children could play while we conversed and discussed whatever literature we’d decided to read.  I used to look forward to those meetings every other week, and enjoyed the fellowship of the women, many of whom I’d known for years.

It became more difficult to attend as Daniel got older.  He was detached, disinterested in the other children, and prone to abrupt changes of mood.  Monitoring his behavior left me distracted and, no doubt, distracting to the rest of the group.  Just being with these women with their “normal” lives became stressful, threatening, as I watched their children develop typically as my own child fell deeper into his mysterious, impenetrable world.  Where I once felt wholly part of something I now felt isolated, anxious and alone.

Hurrying to escape that morning as Daniel’s behavior escalated, I encountered a man at the church’s front door.  Holding it open for me, he acknowledged Daniel’s inarticulate sounds of frustration with a nod of his head.

“You should try it with twins,” the man advised.  “That’s what my daughter has to do!”  He nodded again, smiled broadly, and gave me a little wink.

“Well,” I began, determined to set this guy straight, “my son has a disorder that makes it pretty — ”

He didn’t even hear me.  “Just try it with twins!  Give that a try!  My daughter really has her hands full!”

Outraged and speechless, I scooped Daniel up and rushed to my car, shaking all the way home, incensed by the ignorant, self-consumed ass who didn’t recognize a real parenting challenge when it stood whining at his feet.

If only I’d had Dr. Phil’s advice back then:  “If you can develop the ability to really see through another person’s eyes, you’ll be tapping into an incredibly powerful tool to managing your life.”

If only I’d been capable then of heeding that advice.

Years later I still think of that encounter, and imagine our conversation if I’d been able to leave the cocoon of my frightened self-righteousness for just one moment, and ask him about his grandchildren.  I could have indulged his pride, cooed over baby pictures, and taken a back seat to his obvious delight.  Or perhaps I’d have learned that he was in fact worried sick, afraid that managing twins was overwhelming his daughter just as mothering Daniel was overwhelming me.  We could have had a dialogue, a meaningful if brief exchange that left us both a little stronger, a little more connected, a little less alone in our experience.

I do that easily these days.  I enjoy such random encounters tremendously.  Thank God I’ve gotten over myself enough to do so.

I try to forgive the woman I used to be, for how I felt and acted back then, when I believed the world had come to an end. Daniel’s autism was not the end of the world.  It was not even close to that.

It just felt that way for a while.