special education – Good Marching

by Kristen - April 28, 2016

The Guardian of Positive Thinking

A few months ago I received notice to file the “Annual Report on the Condition of the Ward,” a document required of legal guardians, roles Daniel’s father and I have served since our son became a legal adult.

The court doesn’t grant guardianship lightly, even in cases as clear-cut as Daniel’s. Although he’d been living in Wisconsin for over two years when he turned 18, Daniel was required to appear in person at the courthouse in Illinois, twice: first, so the guardianship petition could be physically served to him, and again several months later, at the hearing itself. We had to demonstrate both that Daniel needed our legal oversight, and that we were qualified to provide it.

Getting him to the courthouse was a logistical nightmare all its own, and by the time our case was called, we were tense and anxious and testy. My husband hovered nearby as Daniel’s father and I escorted our son forward, ready to intercede should he suddenly bolt or become otherwise agitated. We needn’t have worried. Daniel stood complacently in front of the judge’s bench, oblivious to the gravity of the proceedings on his behalf, tapping repeatedly on a sticker book with his index finger, muttering his multi-purpose phrase, “Ahh doh doh doh doh doh doh doh dooooooh…”

We’d been prepped for questions the judge may pose: Did Daniel understand the nature of the petition? Did he agree with its terms? What plans did we have for his future, what long term arrangements had we considered or put in place? And, as divorced parents, could we make decisions together, work in tandem for Daniel’s sake?

The judge asked none of these questions, though. The evidence of her own eyes was the only proof necessary of Daniel’s need for a lifetime of stewardship. An expression of muted compassion on her face, she simply signed our petition, and wished us good luck.

I try to craft a fresh-sounding response to the questions on the report each year, regarding Daniel’s living situation, health and welfare. It feels like a test I never quite ace, my answers distressingly similar despite the passage of years. I note our weekly visits, and the activities that occupy his days: community outings, accompanied by aides, restaurant visits, shopping trips, walks on the beach when weather permits. Not a thrilling chronicle, but more than I once could truthfully recount. His life is not what I want it to be, but it’s a fuller life than he’s had in years.

Noting that the report wasn’t due for several months, I set it aside, escaping to the pages of the crime novel I’d begun the day before.

The plot centered on a 19-year-old man, soon to be released after seven years of incarceration as a juvenile offender. His newly appointed probation officer reflected that the young man would have been acclimated to re-entry into society with day outings in recent months: “The boy would have had excursions accompanied by one of his case managers. Shopping trips, a meal at McDonald’s, a walk in the park.”

Shopping trips.

McDonald’s.

A walk in the park.

I had my annual recap of Daniel’s activities right there. I need only copy, word for word, the description of a prisoner’s meager, supervised outings to capture the essence of my son’s life experience.

I shared this bleak observation with my husband later that evening, my remorse at failing to write a better story for Daniel’s life, that his experience hasn’t changed significantly in the years since we stood before the court to petition for guardianship.

“What kind of a guardian am I that Daniel’s life mirrors that of a prisoner?” I asked mournfully.

Andy listened patiently to my rambling, then asked a question of his own. “Remember the closet?”

I remembered.

It was the room fashioned by Daniel’s teaching team in those last, desperate weeks before he left home for residential school, a one-windowed storage area off the special ed classroom of the high school where he was enrolled as a sophomore. As his mood and behavior deteriorated, day by day, he spent more time in that closet than not, cocooned in his own, secure hideaway, sleeping, humming, fiddling idly with the same few books or puzzles for most of the school day.

And staff allowed it, because they were out of ideas by then, when all the painstaking structure and therapy, the routines and behavior plans and social stories had broken down, Daniel’s behavior so volatile that his team couldn’t walk him through the halls to the lunchroom, for fear he’d lash out, for fear he’d hurt someone.

“Remember the call I got,” Andy continued, “while you were at work?”

I remembered that, too.

They’d asked him to come immediately, to pick Daniel up as soon as he could. Don’t bother parking, they told him, just pull directly across the practice field behind the school, as close to the exit near Daniel’s classroom as possible.

He recalled the bite marks, red and angry and swollen, across the teacher’s arm when she brought Daniel to the car, stark testimony to autism’s vicious hold on our son, the power it wielded, beyond our understanding or control. He recalled the grief in the teacher’s eyes, the resignation of one who had fought so vigorously, and had nothing left to fight with.

Yes, I remembered. I remember it all.

“I know he’s not where you want him to be,” Andy told me gently. “But Daniel’s not in prison. That closet was a prison. They didn’t intend it to be, but that’s what it became.” He took my hand. “But he’s not there anymore.”

I don’t know how to let go of all that remains unmet in my son’s experience, to merely shrug and concede, “It is what it is.” It will never be so simple. Acceptance is an ongoing narrative, rehashed and revised and picked at, again and again through the passages of Daniel’s life. I doubt I’ll ever stop questioning what I could have done differently, if it would have made any difference at all. No one would accuse me of being a glass-half-full kind of person where my son is concerned. Autism stole Daniel’s life before he ever had a chance, and I grieve that every day.

Yet I am grateful, too, more grateful than these pages reflect, for what my son has now, for his faltering progress since I completed my last guardian report a year ago.

Shopping trips. McDonald’s. A walk in the park.

Simple pursuits that just a few years ago we ached for Daniel to enjoy again, pursuits I can no longer provide for him alone. I am his legal guardian, but no longer the right one to care for him. How this haunts me sometimes, when I want him back so desperately, to savor his presence on a daily, reassuring basis. I don’t remember the anxiety in those moments, the chronic worry, the certainty that catastrophe was imminent, a crisis that would prove irrevocable.

Yet I’m witness to Daniel’s adjustment to the life he has, the opportunities at hand. I don’t know if these are enough for him. But whether or not they are enough for me is irrelevant. My role is to ensure that possibility exists for him, that doors open, that the self-indulgence of despair doesn’t cripple me. It means embracing the progress we’ve discerned, however fragile, reaching past the loss, and daring to hope for more.

This kind of thinking doesn’t come easily for me, my thoughts so often colored by what could have been. What life would I describe for my son were this disorder not a part of it? I long to write that story, but that isn’t the story to be told. The one we are writing now needs my passion, my energy, my faith.

I remember that, too.

Year after year, after year.

Excerpt from “Those We Left Behind” by Stuart Neville.

by Kristen - May 8, 2015

Two Rooms

The first time I visited the place where I would leave my mother for the rest of her life I knew I had been there before.

It wasn’t physical similarity to an earlier place that brought this sense of déjà vu. The room had no colorful alphabet, or calendar, or map of the United States. No adaptive technology devices, unless you counted the wheelchair straps securing their frail cargo. There were no computers with modified touch screens, or work desks tailored for special students; no vocational training stations for teaching skills that aim, someday, at employment.

But I knew this room. I knew this feeling. I had been here before.

****

She didn’t recognize that she was moving, that her ride in the Medicar that afternoon would terminate at a new facility better equipped to handle patients advanced as far as she has in this disease. She is unaware that she is surrounded now by strangers, caregivers to whom we entrust her welfare, her reliance on others complete. Protected, at least, by this disease that strips all else – character, autonomy, achievement – my mother is spared knowing that these rooms will house the conclusion of her days.

She has been gone for many months now, lost to the appalling affects of Alzheimer’s.

I tell myself – for how can I know? – that the worst days are behind her; the confusion, the agitation, the gradual, insidious losses chipping away at her hold on the qualities that had shaped her: her talent as a fashion illustrator; her style sense and skill as designer and seamstress; the classic looks that made her, always, the most beautiful woman in the room. She doesn’t appear to mourn these losses. The disease which has stolen these things has the grace to blunt the pain of their passing.

I remember, though. In that tour of the nursing home, the dayroom filled with fading ghosts who share the vacant gaze of my mother’s eyes, who slump and gape and shout and moan, I knew unsparingly what my mother has lost. My mind silently rebelled: “It can’t be that she belongs here, that this is what a life of vibrance and accomplishment has come to. Not my mother…”

And there I was again, in that other room, which I’d visited eight years earlier, several weeks after I was told that the special education program in our home school had proven insufficient for the level of my son’s disability. There were other programs, alternate classrooms, that perhaps we must consider, which taught not just academics, but life skills…

Of course I knew that this was true. Autism is a profound disorder. Lifelong. I understood. I did. I recognized, I acknowledged, I concurred. Wearing the upbeat smile of mother-advocate, I visited the Education and Life Skills classroom prepared, I thought, to embrace whatever was necessary to help my boy.

The staff was warm, nurturing as they cared for and educated these special children, some in wheel chairs or leg-braces, some who did not speak but communicated by other, atypical means; conditions familiar to me but more threatening as a whole, a strange society my son was bidden to join, branded now as one of the collective of the disabled.

But the peculiarities of my child were not to be permanent, you see, because things would change, somehow — they would. It would be different someday for my boy. My son would be the exception, the miracle…

They had just finished lunch, in their contained world-classroom, and a scattering of potato chips lay on the floor beneath their table, unremarkable, certainly, following an elementary school meal. Yet my whole world came down to that pile of spilled food, the mess and disorder and hopelessness it represented, the gaping maw of an alien world.

Banishing the image to the attic in my mind reserved for such troubling realities, I continued with the orientation, nodding at staff, commenting; agreeing, agreeable, numbed by the cunning strength of denial.

My shelter of self-deception gave way that evening as I struggled to clean another spot from the carpet on the family room floor. Andy found me on my knees, scrubbing frantically at a stain I knew would be permanent, and he said, “Hon – what is it? Let me, I’ll do that – ”

“Not my boy!” I screamed. “Not my boy! Oh God, not my boy!”

****

I’m told my mother has adjusted well, cocooned for the most part in her impenetrable world, but smiling from time to time. Perhaps she remembers some earlier pleasure: a favorite pet, my father’s touch, the enduring tune of a well-loved hymn.

Images flash now through my own memory: a turquoise party dress she’d sewn for me, and the perfectly matched shoes she found, triumphantly, on sale in Fields’ basement; my mother weeping as she cradled our lifeless terrier at the side of a rural Minnesota highway; her knowing smile when I was five years old as I told her, solemnly, that I’d never get married, because I would never leave her.

My son laughs frequently, and often I don’t know why. But his joy is infectious, and we laugh with him. Vacation days so eagerly anticipated by other children are more difficult for him; he misses his classroom. The routine, the schedule, the pre-vocational training at which he excels, have given him an independence I once despaired of ever seeing.

I don’t know if he senses the enormity of what this disorder has cost him, if he recognizes in his own way that there was once more to be hoped for.

But I don’t think so. Insulated from such doubts and questioning and regret, he is happy in the world he knows.

I will remember this.

My mother died on April 28, 2005, at the age of 78.

by Kristen - November 11, 2014February 23, 2016

Beating at the Darkness

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.

by Kristen - April 2, 2014April 4, 2014

Graduation Day

My son graduated from Deerfield High School on January 9, 2014. I know this because I just received his diploma in the mail.

I confess that I’d almost forgotten that he was even still enrolled in high school. He hasn’t set foot in DHS for over six years. But he was technically still their student. They supported his schooling until he aged out of the special education system, and awarded him a diploma like any other student when he finished.

If he had any understanding of the concept of “graduation”, we would have thrown a party. A huge party. I would have loved absolutely nothing more. Planning Natalie’s graduation bash six years ago was a months-long operation and I savored every painstaking detail. She has made us so consistently proud over the years, and we couldn’t wait to celebrate her achievement.

But the months leading up to Daniel’s “graduation” were more fraught with anxiety than happiness, more stress than waiting on ACT scores or college acceptance letters could ever have induced. They were some of the worst days since our journey with autism began over 20 years ago.

This grueling period did not come as a surprise. I’ve worried about the day he’d leave the safety net of the school system for as long as I can remember. We’ve heard horror stories about finding adult care in our state since Daniel was a little boy. Even before the extent of his limitations emerged, before the increasingly erratic and intense behaviors which would so shape his future became commonplace, the question of what would happen to my boy simmered malignantly in my thoughts on a daily, relentless basis.

Since December 2007, when Daniel moved to a residential school in Wisconsin, I’ve been ticking off the days until he turned 22, when the support and education he’s received as a student with a disability would come crashing to a halt. Our school district was conscious of this impending deadline, too, offering support and transition planning since Daniel became a teenager. But the outlook for adults with disabilities in Illinois is dismal, ranking last in the country in services across the board for some of its most vulnerable citizens. Waiting lists for residential placement, which my son requires, are years long. Funding, when you can get it, often doesn’t meet the basic costs necessary for care and productive opportunities for people like my son.

And these deficits in the system were already entrenched before a group home intake manager ever laid eyes on my son’s behavior records. With so many disabled adults vying for funding and residential openings, no one was knocking down our door to accept a client with a history of aggression, impulsivity and biting. It took three years to find the group home where Daniel lives now. It was a tortuous experience. The home stretch, 2013, will rank as The Bad Year in the annuls of our family history for a long time to come, probably forever. I could, and may, write volumes detailing the impotence and despair we experienced at the hands of impersonal bureaucrats and ego-driven attorneys involved in this process. There were days the stress was so acute I survived it moment to moment.

But we also met some of the most dedicated, caring professionals we’ve ever encountered. Two weeks shy of his 22nd birthday, we moved Daniel to his new home in Ft. Atkinson. His father’s move to Wisconsin two years ago allowed Daniel to remain in that state, where, though not perfect, the services for disabled adults are twice as good as in Illinois. I thank God for the circumstances which led to this outcome.

It is not ideal, of course. Nothing ever is, as several people have reminded me lately. I still harbor the fantasy I’ve clung to since the day Daniel moved out of my care when he was just 15. I’ve dreamed of him coming back to me, closer to home, when he reached adulthood and we found a long-term placement. I imagined him just a short drive away, with frequent visits home, when he’d become reacquainted with our relationship as it used to be. He’d blow bubbles in the backyard as I gardened, or take a walk with me to Starbucks and throw pennies in the fountain outside. I’d get his hair cut again by the stylist who always made him seem proud of his “look.” We’d read the books he grew up with, and new books of his choosing, as we lay relaxed and unhurried, side by side against the headboard in his old bedroom. He’d begin using again the words he’d once mastered with flashcards and alphabet games through the countless evenings of his childhood. At the end of the day he’d return to his group home reaffirmed, cradling, perhaps, a new memory that he’d cherish as much as I did.

That’s not quite what happened, though. He’s in a new group home, but still an hour and a half from Deerfield: close enough to visit each week, but not the proximity I’d hoped for. We do know how lucky we are, to have found him a home at all, and a home where we trust the staff and the 24-hour care we can’t provide him. Given the profound level of Daniel’s needs, we’ve done the best we could have hoped for.

Daniel surprised us all on January 9, when he adjusted to such a major transition more easily than we had dared dream possible. After a few hours of pacing and agitation, his sister gradually calmed him, and persuaded him to eat dinner with his two new housemates. We gave him a bottle of soda, and suddenly all was right in his world again. He seemed to realize that his needs, and at least some of his desires, would still be met, despite his new surroundings. As we left, he was giving high-fives to the staff and blowing his bubbles like nothing dramatic had happened. Driving back home that night, my husband, Natalie and I were drained of energy but tremendously relieved. The day I dreaded for years was finally behind us, and it had gone well.

As agreed, I called the director of special services for our school district the next day to confirm that the transition had gone as planned, that Daniel was officially out of the system he’d been part of for 19 years, formally enrolled in a new agency now accountable for his welfare. He was no longer a student, and would no longer be carried on the rolls of Deerfield High School. He had graduated.

Congratulations, Daniel. High five.