disabilities – Good Marching

by Kristen - February 8, 2016February 9, 2016

Pizza, interrupted

It should have been a good visit. My son had been asking for me all week — “Mah? Mah?” — and even had an outing in mind. “Pee-zah!” he’d declared, again and again. “Mah? Pee-zah?” It seemed he couldn’t wait to see me.

As soon as Daniel spotted me, though, I knew something was off. Rushing toward me demanding “pop,” he gestured to the soda dispensers near the front of the restaurant. His beverage obsession is nothing new, and extra soda is a treat he anticipates when I visit. It’s one of the few pleasures he asks of me, a modest joy I’ve willingly indulged through eight years of structured residential care.

His aide, Brittany, however, was telling him no.

“Uh-uh. No way,” she said firmly. “You’re having juice.” My heart sank, realizing he must have stolen a soda, coffee, or other random beverage that morning, and now had to pay the price. And I knew we’d pay the price with him. His conflict with his caregiver would infect our time together, too.

Daniel grasped my chin, forcing me to look him in the eye. “Pop?” he repeated desperately, his dismay and frustration palpable. “Pop!”

“I don’t know how we’re going to do this without soda,” I told Brittany, longing to grant his simple wish, fearing an ugly, public scene if I let him down. She seemed to waver, then shook her head decisively.

“You can have juice, or we can go home right now,” she told my son. “You rather go home?” She pointed toward the door.

“No!” he cried in alarm, throwing off his coat as he flung himself into the booth my husband and I had claimed.

Would Daniel even understand the connection, I wondered, between stealing pop at his group home, and being denied it now, with me? Brittany’s consequence may do nothing but taint the few hours we had with him. We’d reached a no-win situation five minutes into our visit.

We’re in a unsettled place these days. My son’s aides manage him as I no longer can, and I don’t know whether to laugh or cry. I am his mother, but no longer his caregiver; his most ardent advocate, yet outside his circle of daily life. Their fondness for Daniel is obvious, but tempered by a professional objectivity I can never provide. His team aims for the long term; I live for the fleeting moments of tenderness, of meaningful contact with my son.

He wasn’t fooled by the paper cup holding the Hi-C I dutifully poured for him instead of the Diet Coke he’d been counting on. He knew he’d been cheated. I felt cheated, too, yet obliged to support Brittany’s authority, authority we granted by placing Daniel in her care.

He tore through the sticker book I’d brought him, scattering its pages across the table, requesting pop every few minutes, clenching his hands in anger when we told him no. Andy tried to calm him, squeezing Daniel’s hands in his own as he’s done for years to soothe him. But our merry visit was going south fast.

Making matters worse, we’d caught the attention of a young girl sitting with her parents a few booths away. I noticed her furtive glances when we first sat down, and imagined her mother’s whispered explanation of Daniel’s likely disability, her admonishment not to stare.

Unfortunately, the girl couldn’t seem to resist.

She peered over her shoulder compulsively, regarding Daniel like an exotic carnival attraction. Cautious at first, she quickly grew bolder, staring opening as the minutes ticked by.

Annoyed, I caught and held her eye. I’m on to you, toots. Knock it off.

She returned my stare unabashed for a good ten seconds, finally dropping her gaze, only to renew surveillance of Daniel moments later. When her mother left the table briefly, she shifted position, stretching her legs across the seat to observe the spectacle more comfortably. Her father, meanwhile, was oblivious, his nose stuck in his phone.

I reported this all to Andy and Brittany, who were sitting with their backs to the girl.

“How old do you think she is?” I asked Brittany, whose own children are eight and nine. Perhaps I was expecting more courtesy than a child her age could reasonably demonstrate.

“Oh, she’s old enough to know better,” proclaimed Brittany, glancing behind her. “She must be 11 or 12. She definitely ought to know better.”

I met the girl’s eyes again, my disapproval pulsing across the few yards between us. She stared back, her expression an unsettling cross of innocence and cunning. She knew, I was sure, that staring at my son was wrong, perhaps even distressing. But she did it anyway. I couldn’t imagine my own daughter behaving this way in the face of such obvious adult reproach. It was disconcerting, creepy, even, her brazen gaze an unwelcome spotlight on an already strained, dispirited experience.

Perhaps I’d known from the start that something would blow that day. Or maybe it was the epic struggle for Andy’s drink that broke me.

One momentary lapse of vigilance, and Daniel had snatched the forbidden cup and began sucking frantically on its straw. Andy grabbed back and a tug-of-war ensued, my husband the final victor, but not before iced tea had splashed across the table and onto Daniel’s lap.

Tossing a sodden napkin aside, I looked up to find the girl’s gleeful attention glued to the bizarre scene we presented: a 24-year-old “normal” appearing man’s frenzied struggle with his stepfather over a soda cup in a pizza parlor.

“That’s it,” I muttered, abruptly rising from our booth.

Alarm and guilt washed over the mother’s flushed face as I stood before their table.

“Your daughter has been staring at my son since the moment we got here,” I said in a low, controlled voice. “He is severely autistic and I understand his behavior is unusual. But we are trying to share a meal with him. And apparently your daughter doesn’t understand that it is rude to stare at disabled people.”

Without waiting for a reply I returned to my seat. Glancing up, I saw the girl’s face crumpling as she met her mother’s appalled glare, and heard her belated whimpering: “I’m sorry! I’m sorry!”

I looked down at our napkin strewn table.

“I think she’s apologizing,” Brittany murmured, but I didn’t look up. I didn’t want an apology. I just wanted her to stop staring at my son.

Did I do the right thing? Did I overreact? A friend noted that I could have used the episode as teaching moment, sharing insight into autism and disabilities in general. Our outing could have ended on an positive note.

Honestly, though? I wasn’t inclined to teach that insolent girl a damn thing. My son’s dignity trumped sensitivity training by a mile. Whether or not Daniel was aware of the scrutiny didn’t matter a bit; I knew. My role in his life has diminished, but my instinct to protect him was what mattered in that moment. I’m surprised I didn’t go further, and scream at her out loud: Stop looking at him, you horrid little brat! He can’t help it, he can’t help it and neither can I! This disorder has consumed us both.

Yet I’ve plucked at the layers of this drama a dozen times this week, revealing more questions than answers. Did I lash out merely to assert authority over a ill-behaving child because I’ve lost control of my own? Had I simply unleashed my impotent sorrow, recognizing that transitory moments are all I have left with my son, and one more of these had been stolen by the disorder that rules our lives?

Will my rebuke help that girl in the long run, kindle a new awareness or compassion? Or had I simply punished her for bearing witness to our pain?

Was this, in truth, less about my son than it was about me? Can I possibly separate the two?

Daniel’s care team is playing a long game now; I just want to be his mother for a few precious hours, untethered by rules or consequences or procedures, to engage him on my own terms. Yet I don’t know if my terms are sustainable. I fear alienating the people we are dependent on, who care well for my son, who we are indeed luckier than many to have found. Who am I to question their approach when they’ve shown Daniel a fuller life in the last 12 months than he has experienced in years?

There are no easy answers here. Yet I feel compelled to reclaim my place, my own authority, to form a new set of rules for the two of us, supporting our relationship as mother and son.

I have only my heart to guide me. But that will have to be enough.

by Kristen - June 18, 2015June 18, 2015

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

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.