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.

4 comments
  1. This is probably your most raw and powerful piece yet. And I didn’t think that was possible given the honesty and insight you have shared before. You describe that moment in the principal’s office with such clarity that I feel like I right there with you, about to lash out at the thought of subjecting your son to an HIV test. In my better moments sometimes I hope that my own special needs son’s purpose is to help others better understand disability and be more empathetic to dispair. But in those moments when you know that their caregivers are also frustrated and at loose ends over his behaviors, I start to question what brings me confort in my darkest hours. Thank you Kristen for so poignantly and honestly sharing your journey. It helps me and countless others a glimpse into a world that needs to be understood better.

    1. Thank you for sharing my journey for years, Marla. It’s true for me too, that when the “experts” seem to throw up their hands it is especially frightening, or at least it is to me. I may have behaved differently now, with years more confidence and experience behind me, but the feeling of powerlessness remains when your child is suffering. I know you understand this better than most. xo

  2. I agree with Marla wholeheartedly — raw, powerful writing that serves a beautiful purpose. Thank you for sharing all of this with us. I am better for having read it.

    1. You are a dear friend, Kary, and I always look forward to and appreciate your comments here. Thank you for taking time to share in this all. xo

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