by Kristen -

In a Heartbeat

Image

Last week I watched a “TED Talk” presentation of UK teenager Rosie King discussing her autism, emailed to me by a friend.  It was titled, “How autism freed me to be myself.”

Rosie has made a splash since her “self-diagnosis” at age nine, later confirmed by doctors as Asperger syndrome, and her “burning desire to help make the world a more tolerant place for people with autism.”  Described as a “storytelling activist” by the TED site, “Rosie King challenges stereotypes of people with autism and contextualizes the issue by asking us, ‘Why be normal?’”

Perhaps it wasn’t the best time for me to be asked that question.

Earlier that day my husband and I visited my son at his group home in Wisconsin, planning, at the suggestion of one of his caregivers, to take him for a much-needed haircut.

This is more complicated than it sounds.  As I’ve written about frequently, Daniel’s rigidity makes any divergence from routine a dicey, even harrowing proposition.  Taking him into the community for any reason is a challenge none of us take lightly.

At nearly six feet tall, he is a force to be reckoned with when agitated.  We brace for our outings these days.  Without warning my son with autism can become aggressive and out of control, grabbing, lashing out, even biting those in his path.

Accompanied by his caregiver, however, we had Dan’s hair cut at a Great Clips in town.  It was a successful outcome this time, but only in retrospect.  That small task was a stressful, intense ordeal, as so many of our experiences with Daniel have been since the day he was born.

I wish this wasn’t true.  I wish more than anything that he was not burdened with a disorder that makes so much of his life challenging, that causes him to behave in ways I’m certain leave him as distraught as we are.

I wish a simple haircut was routine.

But this isn’t the pattern of our world.  Daniel isn’t “normal.”  And that isn’t something I feel like celebrating.

Rosie King’s TED Talk underscores the broad spectrum that autism, as defined by the medical establishment, now encompasses.  That she could speak so confidently to an audience of over a thousand demonstrates this.  Her “autism” bears so little resemblance to the autism I know, however, that it was more like watching a very bright woman describe her thought processes than listening to any person with true autism that I’ve ever encountered.

Her premise, as I understand it, is that society must move toward greater open-mindedness and be less prone to labeling.  She recounted her school experiences, her heightened ability to communicate with her non-verbal autistic siblings, the myriad ways in which embracing her differentness has enhanced her life.  She got a big laugh when she remarked, “What if the biggest compliment you ever received was, ‘You’re so normal?’”  She challenged society’s assumption that “different,” as in “autistic,” is a detriment at all.

This attitude is popular among an increasingly vocal segment of the autism community, with many “higher functioning” autistic people and their advocates insisting that autism isn’t a disorder but a different way of thinking, denouncing the stigma of disability and the stereotyping the word autism brings.

I have no problem with that, in itself.  Of course none of us should be defined or restricted by others’ perceptions.  I am in favor of “thinking outside the box,” as Rosie King champions, of all persons being free to explore and achieve their highest potential.  Who isn’t?

Except that vocal faction, represented by Rosie King’s “autism” speech, paints a terribly misleading picture of what true autism really is, the devastation and ruined lives it leaves in its wake.  And that is harmful to the vast numbers of those suffering from the ravages of classic or severe autism.  It skews the perception of the serious and wide-ranging toll this disorder takes, and influences those with authority to direct help to the people who desperately need it.

After her speech hit the internet, Rosie King was lauded for her stirring message. Trendinghashtag.com reported some of the comments Tweeted around the globe:

“Why make everyone normal when we can celebrate imagination! Rosie King!”

“Proud young Rosie King with autism: what if the biggest compliment you received was, you’re normal? She is extraordinary.”

“Rosie King reminds us to put the PERSON first. One of the most inspirational + REAL talks I’ve ever heard.”

Real in Rosie’s world of autism, perhaps.  But not the world of autism I, and many of my friends, are living in right now.

That kind of autism isn’t quite so inspiring.

It is an inexplicable tantrum during brunch at a restaurant where your teenaged daughter is waitressing, requiring paramedics and a trip to the hospital to treat bites your son has inflicted on both of you.

It is a woman seeking emergency care for her 20-year-old grandson while his mother undergoes a double mastectomy, only to be told his needs exceed the parameters of the very facilities meant to provide that care.

It is my friends’ son requiring seven people to hold him while general anesthesia is administered for a routine dental exam.

It is heavy-duty antipsychotic drugs prescribed by doctors like the one who told me last week that my son is “a young man with serious issues who has the potential to really hurt someone.”

It is specialized, lifelong care; it is the unrelenting question of what will happen when you die, of who will love your child as you do when you are gone.

It is therapies and medical scans and sleepless nights, bowel trouble and breath-holding and head-banging.  It is scars and screaming and broken marriages.

It is loving your child beyond measure, while watching the fascinating, normal world pass him by.

It is being afraid to take your son for a haircut.

Autism may have freed Rosie King to be herself, to escape “the tiny boxes with specific labels” she decries.  And that’s a wonderful thing.

Her “self” is pretty close to “normal,” though, compared to my son, or the tens of thousands of others living with classic autism. That very normalcy is what allows her to thrive.  The attention she receives is due in large part to her achievements as an “autistic” person, the label she wishes not to define her.

And that is what is troubling to me, why I didn’t enjoy the video as my friend thought I would.  Society sees her as an example of the limitless potential of those with autism, a happy autism success story.  But in reality, those stories are rare.

Rosie King’s success is no less valid because she is “high functioning,” but it creates confusion for the majority of people unfamiliar with the spectrum nature of the disorder, who will hear the word “autism” and remember the remarkable teenager who overcame it.  And that doesn’t happen very often with true autism.

One parent posted this comment on YouTube following the story:  “Thanks for sharing.  My 3.5 year old son is currently being assessed for autism…  The worst fear we have as parents is having him labeled for the rest of his life.  But this video has helped me alleviate some of that fear.  I know he may be labeled by some, but others will see what a smart, loving person he is.”

My son is smart and loving, too, despite the behaviors he is capable of.  Those who know him see that, too.  Whether or not he is “labeled” won’t change the impact, however, of the disorder that has claimed him, or the many others like him.  It doesn’t diminish the hideous consequences for those who cannot take the stage to tell their own stories.

I fear I offended my friend with my honest reply to his email, that while I appreciate his thinking of me, these kinds of stories are actually hard for parents to bear, the “why be normal?” mantra a kick in the teeth to those of us who’d give anything for “normal.” But if I want the truth as I know it to be understood, I have to be willing to share it, even when it is uncomfortable to do so.

Rosie King concluded her speech by declaring that she wouldn’t trade her autism for anything in the world.  My inability to say the same about my son’s autism makes me defensive sometimes, as though I have to assure people that I wouldn’t trade my son for anything; that even if I knew what was coming almost 23 years ago I’d do it all again, for the joy Daniel has brought me as my son.

But that doesn’t mean I wouldn’t trade his autism for just about anything.

I’d take normal in a heartbeat.

by Kristen -

Beating at the Darkness

dark_forest-t2

I read a lot of crime novels.  If you’re not a fan of the genre, you might be surprised at how evocative its language can be, how often a sentence or phrase cuts right to the heart of things.

Take this passage from Irish novelist John Connolly’s most recent book, “The Wolf in Winter.”  He’s describing the attitude of one serial killer toward another pair of killers, who are actually heroes in the series: “The Collector admired their single-mindedness, their focus… none of the fruitless beating at the darkness that come from those who have grief without power, and anger without an object.”

See what I mean?  Hits right where you live.  Or where I lived, anyway; where I lived for years.

*****

I was encouraged when my son began Kindergarten at the elementary school just blocks from our home.  Although in a classroom for students with learning, physical and developmental disabilities, his placement at our home school signaled a step away from the whole special services system he’d been enrolled in since he was two, that menacing world still incomprehensible to me in relation to my son.

We adored Ellie, his young teacher.  She was bright, nurturing, naturally fostering the affection we knew Daniel capable of.  Assigned to her class again for first grade, his tolerance of a regular school setting buoyed my hope that autism hadn’t completely stolen his future, that he still had a chance, somehow, at a normal life.

Two aides assisted in the classroom, a laid-back woman about thirty, and a less demonstrative woman in her mid-fifties, who seemed experienced in all manner of students with disabilities.

As it happened, she hadn’t experienced a student like my son.

*****

As first grade unfolded, Daniel’s behavior became more turbulent, outbursts and tantrums soon the norm, the communication notebook Ellie sent home each day reporting “upsets” or “incidences” more regularly as the months passed.  We met often and spoke on the phone, concurring that Daniel’s language deficit fueled his frustration, and framed exercises to help him express himself, searching for clues to his disruptive, unsettling behavior.  Together, we were hopeful, upbeat, determined to unlock the mystery of my cherished little boy.

Alone in the dark moments, though, I despaired of ever truly knowing Daniel at all.  My beautiful son was more an enigma than ever, moving on schedule from toddler to personhood, yet becoming a person I didn’t understand.  Autism and its origin remained inscrutable, while its consequences grew more familiar with each passing day.

I picked up the call at my desk on an April afternoon near the end of the school day.  By then I was divorced and working full-time at a Presbyterian church a half-mile from home.  Returning to work hadn’t been part of my plan then, but neither was so much of what had transpired in the last several years.  Still mourning my father’s death the winter before, I was running on overdrive, colored by grief, and doubt, by simmering, impotent fury.

“Kristen, I think you better come over here,” the young aide from Daniel’s classroom advised, her mellow voice tinged with concern.  “Dan’s fine, but he had a rough afternoon.”

“What happened?” I asked, alarm and dread spiking painfully in my chest.

“Well, he — he had a bad day,” she replied cryptically.  “And he wet his pants, and, well, he’s a mess.”

Ten minutes later I was in the classroom, cuddling my son as Ellie described his escalating moodiness through the afternoon: the back-arching and floor-flopping, the inconsolable fits of crying, the final wild outburst when he bit the elder classroom aide, bruising and breaking the skin on the back of her hand.

My face burned with trepidation and dismay; I sensed what was coming before Ellie spoke the next words.

“I think we have to start considering another placement,” she continued gently.  “I don’t know if we’re equipped for Daniel here.”

*****

I hardly recall getting home, arranging for Natalie to stay with our neighbors after school, or nestling Daniel in front of a video.  I remember only rocking in place on my screened porch, shoulders hunched as I dragged on a furtive cigarette, the future in all its threatening uncertainty crashing in from all sides.

“Now what?” I whispered again and again.  “Now what?”

I learned the immediate answer to that question the next day as I sat in the principal’s office, invited, I thought, to discuss safeguards the team might employ to avoid another aggressive episode in the short term.

The aide Daniel had bitten, I was relieved to hear, had been treated by her personal physician, with no stitches necessary or follow-up likely.  Understandably, though, she was shaken, and had vowed not to work with my son again, a reaction that while hurtful, in my fragile state of mind seemed justified.  Bites, I knew from personal experience, hurt like a bitch, and losing control of an aggressive child is traumatic.

I expressed repeatedly my remorse at Daniel’s behavior, an attitude the principal hastened to quell, covering my hand with her own.  No one blamed me, or Daniel, for the incident, she insisted.  Everyone involved recognized that these episodes came with the territory.

However, the principal went on, taking a breath, on the advice of her doctor, the aide was requesting that Daniel be given a blood test.

She wanted my seven-year-old son tested for HIV.

The words didn’t quite sink in.  I gaped at the principal as she continued, reluctant, it seemed, to convey the message she was compelled by her position to deliver.

“She knows he doesn’t have anything,” she murmured apologetically.  “She’d just feel better, being sure.”

I stared at her, dumbfounded.

Five years of despair converged in that moment, deflecting all rational thought.  Five years of analyses and treatments, of therapies and exercises and approaches with scant, disheartening result.  Five years of pleading for unknowable answers to empty, futile questions, of desperate promises to an unwavering God; five years of battle with an unfathomable enemy, an enemy that, despite all our efforts, was winning.

I snatched back my hand and leaned forward, my body trembling with rage.

“I don’t give a rat’s ass about making her ‘feel better,’” I hissed.  “She was supposed to be protecting my son, not the other way around!  Natalie knows how to avoid being bitten by her brother and she’s only nine years old.  Don’t you dare talk to me about making her feel better!”

*****

I understood powerlessness then, the lost flailing in the dark, the stifling weight of anger ill defined.  I knew the bitter truth even as I was lashing out, heaving the burden of my grief on the only person at hand: there was no one to blame for what was happening to my son, no reason to which I could fasten my rage and my awful, consuming despair.  To accept the true answer, the impassive certainty that life isn’t fair, was almost unbearable; to recognize that however loudly I screamed, the world would simply shrug in reply, and go on.

As painful chapters often do, that one served a purpose.  From the wreckage of those days I found direction, and learned to channel the energy of my outrage more productively; to set aside the haunting questions whose answers, if they exist, will do nothing to change what we’re living with now.  The issues of why and how will always be with me, but I exist with them more peacefully now.

I still probe the darkness now and then, but my son needs my presence here.

I need to live in the light.

by Kristen -

A Treat to Remember

Daniel vampire

If I could do my life over, I’d be a party planner.

There are few things I enjoy more than preparing a celebration, like the Halloween party for children with special needs I led for our Township last weekend.  I spent weeks arranging details for crafts, games, decorations and snacks so the event would run with ease.  Thanks to a host of generous volunteers, I think it did.

Celebrations with my own family, however, didn’t always pan out as planned.  The blueprints for gaiety unrolled in my mind were rarely executed as intended by my little boy with autism.  He had his own ideas.

Take birthdays, for example.  I strove to make them festive occasions in our household, involving favorite meals, helium balloons, and a musical birthday plate for the guest of honor.

Daniel, however, was unimpressed.  One year he actually developed a physical aversion to birthday cake.  He wanted no part of the homemade confections brought forth for other family members, shoving his slice away with the back of his wrist, lest the offending substance touch his bare hand.

Undeterred, I concocted for his own birthday a dessert comprised solely of Daniel-approved foods.  When the big moment came, he regarded the lopsided, cake-shaped mass of whipped cream and Oreos with a striking lack of enthusiasm, but deigned to blow out the candles and accept a slab without bolting from the table in horror.

I nearly wept with joy.

Halloween, on the other hand, was one celebration I could count on to at least resemble the normal-family ideal I aimed for when my children were young.

Daniel learned quickly that orange decorations meant a trip to Didier Farms, where he opted without fuss for the first pumpkin he saw.  He enjoyed the Jack-o-lantern creation process, squeezing the slick pulp between his fingers, planting the votives firming inside the hollowed shells, then sitting outside, arms crossed and focused, to study the flickering candlelight winking from the pumpkins aligned by the door.

He tolerated every costume I devised for him, ranging from baby cow to cowboy, green M&M to white, floaty ghost.  He expressed no preferences, but never balked at my selections, even the regrettable Mr. Potato Head ensemble of 1997, a choice, bitterly scorned by my daughter, which I’ll never live down if she has anything to say about it.

Daniel didn’t mind it, though.  He marched out the door, clutching his plastic pumpkin with enviable nonchalance, touring the neighborhood with his dad and sister, who swallowed her shame and behaved with typical loyalty to her little brother.

I see them still, their eager, costumed figures heading down the sidewalk as dusk settled in, Natalie holding Daniel’s hand protectively in her own.

“Say ‘trick or treat,’ Daniel,” she coaxed as each door was opened.  “‘Trick or treat!’”  Sometimes he’d utter a proximation of the phrase, but more often just grabbed for the goods, Natalie issuing thanks for both of them before hurrying to the next house in line.

Described later by their father Jeff, who guided them while I manned our own front door, these scenes are as vivid as if I’d been standing beside them: the warm glow of light spilling from doorways onto their expectant faces, Daniel reaching without fanfare into the offered bowl, Natalie gently coaching him, their unique bond deepening, all on its own.

I couldn’t have drawn a more perfect picture if I tried.

In the blink of an eye Natalie was spending Halloween with friends, and her and Daniel’s step-father assumed trick or treat duty in the new neighborhood we moved to when Dan was nine.

He wasn’t a little boy anymore, but I wasn’t ready to pare down his Halloween experience, even if he showed no great interest in participating one way or another.  Of course, I usually claimed the cushy job, parked at home by the front door while dispatching Andy to herd Daniel up and down the street.

This become a bit challenging as Daniel grew older, his abrupt behavior more startling, at age eleven or twelve, to neighbors unfamiliar with his autism.  People were sensitive to Daniel’s quirks, though, recognizing his differentness and treating him with tender, respectful indulgence.  Few begrudged his mute grabs for candy or lack of thanks, which we supplied on his behalf.

But in just a few years trick or treating held less appeal for Daniel.  Having graduated to a more sophisticated vampire costume, he was nonetheless ready to head home after just a few houses, content to pass the evening peering over my shoulder at the children crowding our doorstep, now and then holding the candy bowl himself as careful selections were made.

He was growing out of the Halloween of his childhood, just like his typical peers.  I only needed to follow his lead.

I knew what he was missing, though: the “Halloween Hoopla” extravaganza held each year by our park district; the haunted house teens from our church navigated together, shrieking in feigned terror; the noisy packs of adolescent boys, jostling down the sidewalk, eyes open for girls, collecting the loot they pretended not to care about anymore.

These rites of passage were not right for my son, but I mourned their loss just the same.

Daniel had his own game plan, though.  He was satisfied with the handfuls of candy he swiped behind my back; the roasted pumpkins seeds he surprised me by enjoying, crisp and salty and warm from the oven; our talking candy bowl with the green motion sensing hand that lunged forward as he reached, giggling, for another Tootsie Pop.

He didn’t regret the pages lost from my Halloween blueprint.  He didn’t even know they’d been drawn, and that was all right with him.  And so, in time, it became all right with me.

My kids have been out of the house for several years, but I still decorate it for Halloween.  It reminds me of those simple, unguarded days, the celebrations that ran smoothly, better than I could have planned.

While publicizing last week’s Halloween party and recruiting volunteers, I often told people that I wish there’d been a party like this available when my son was young, a lower-key event where differences don’t matter, and kids and parents can relax and enjoy the celebration in a setting tailored for their needs.

Yet this isn’t precisely true.

I’m thrilled to lead this event each year, providing an experience that seems to be appreciated by the community.  But I wouldn’t change a thing about my own children’s Halloween experiences.

Those memories are pretty much perfect, just as they are.

Dan M&M

by Kristen -

Taking the Long Road

 

Forest Road, Doug Bradley

Photo:  Doug Bradley

Last week I attended a local forum on intellectual and developmental disabilities, co-hosted by State Senator Julie Morrison, the woman who set me on the path to my current job in local government.

Four years ago, when serving as West Deerfield Township Supervisor, Julie asked me to join a committee on a grant program the township was initiating to help its disabled residents gain better access to the community.  Participation on that committee eventually led to my appointment, then election, as Town Clerk, a position I’ve enjoyed for over three years.

While at the forum to represent the Township and its grant program, I was also there as a parent.  It was an interesting perspective.

The forum focused on housing, employment, and helping people with disabilities achieve their individual goals, providing information on programs and services available to assist in these areas.

Most of the information I’ve heard before, many times, having attended countless similar workshops and presentations over the past 20 years.  Listening to a social worker summarize of the maze of federal and state resources  — and knowing first hand the red tape involved in securing those resources — it occurred to me that repeated exposure to these explanations is necessary before they sink in and begin making sense to parents who are bewildered and overwhelmed by the whole confusing process.  At least that’s the way it worked for me.

It took several years just to wrap my head around the unwelcome reality that my son would one day require such services.  Even as I started absorbing bits of information, acronyms like “PUNS” and “CILA” and “SSI”, there remained a self-protective film of denial across my consciousness, allowing me to cling to the fantasy that one day he’d grow past the need for these frightening, complicated systems, and it would all simply go away.

Slowly, fitfully, though, we accepted that Daniel would most likely require residential care some day, and began researching his options more than a dozen years ago.  As my friends in the special needs community understand all too well, finding and securing crucial funding and services for disabled persons is a long and complicated journey requiring expert, experienced guidance, and very often legal counsel.

In retrospect, we were fortunate that Daniel’s level of disability was profound enough to secure the services he needed without protracted, expensive litigation.  Even with extensive modifications to the special education program within our home school, our district acknowledged that they could not adequately or safely educate him.  Just over three months after his first day of sophomore year in high school, Daniel moved to a residential school for developmentally disabled children and teens in Wisconsin.

Fortunate, of course, is a relative term.  While I’d accepted that one day Daniel would need a higher level of care than we could provide at home, I didn’t expect that day to come when he was just 15.  I imagined his transition as a young adult, when he’d be “ready” to leave home and begin building a semblance of independent life.

But those are regrets for another blog.

What I didn’t anticipate last week was how painful listening to descriptions of various programs available to disabled people now would be.  As the parent of a child who desperately needs such services, it should have been a positive, encouraging experience.

And in many ways it was.  It was gratifying to learn of the job training, skill building programs now available to foster independence, the innovative housing opportunities emerging in response to the fast-growing population of adults who need various levels of assistance to live their fullest lives.

As the parent of a profoundly disabled young adult, I was inspired by the room full of professionals dedicated to enhancing the lives of people like my son, and the other parents who share my quest for the best lives for their children.

But as the parent of my profoundly disabled young adult, it also broke my heart, knowing that at his current level of ability, most all of the programs described — even those painstakingly facilitated, adapted, and governed by one-on-one care — remain beyond his reach.

There was a time when these programs were what I aimed for: modified, humbler experiences, but still within the “second-best” realm of what my friend David Royko so aptly calls “hopes adjusted downward.”

These days, however, his behaviors bar him from participating in even the most carefully controlled community involvement, a far cry from the programs described, which offer meaningful work and social opportunities.  As grateful as I am for the strides being made on behalf of people like my son, my heart is heavy that he cannot, at this stage, participate in them.

I learned I wasn’t alone in feeling this way.  During the presentations I took a break for a few minutes, and met in the lobby an acquaintance whose nephew is affected by the kind of severe autism that affects my son.  Her eyes were brimming as she confessed that she couldn’t take hearing it all, aware that her nephew would most likely never partake in the programs described so glowingly, so positively, yet still beyond the constraints of his brand of autism.

Perhaps selfishly, I was comforted to know I wasn’t alone in my meloncholy.

Ironically, my favorite presenter at the forum was the man who’d squashed my hope of bringing Daniel back closer to home when he turned 22 and entered the adult disabilities system.  The intake coordinator for a major network of Chicago-area residential facilities, we’d consulted him over two years ago, before we made the difficult decision to keep Daniel in Wisconsin, where services outpace those in Illinois two to one.

He told us the truth two years ago: that despite Daniel’s demonstrated need for residential housing, and thus the likelihood of his receiving some of the scant funding available from the state of Illinois, he’d be at the bottom of the list of potential clients when petitioning facilities for his placement.  His behavioral history would always precede him.  With waiting lists years long, the most desired facilities can pick and choose their clients, and few would be eager to pick my son.

It was crushing news to hear.  Yet it was the beginning of a painful but necessary process of letting go, relinquishing a dream I’d held dear for six years, and looking beyond to what was available now.

Attending the seminar brought home again how deeply Daniel’s autism has impacted him, how limited his life remains even within the disabilities community.  But it also reminded me how far we’ve come.

Recalling those early days of despair, those frantic, panicked moments as I tried to absorb the onslaught of information and bureaucracy, of endless forms and questions and boxes to be checked, I’m able to appreciate that I’ve made it this far.  It’s not where I hoped to be, but the road still lays before me.

That’s the bad news, and the good news, as well.  The journey is far from over, but I pull strength from the miles I’ve already travelled.

It’s a long road, indeed.  But I’m not walking it alone.

 

For information on West Deerfield Township and its Accessibility Grant Program click here.

by Kristen -

Stolen Summer

Lost summer

When she was 11 years old my daughter Natalie was an extra in a movie.  A friend of ours landed her the roll of “church-goer” in a scene filmed at the Catholic parish just a mile from our home, when he served as assistant director for “Stolen Summer,” first winner of the Project Greenlight film competition launched by Ben Affleck and Matt Damon in 2000.  Parts of the movie were shot here in Deerfield, hometown to the contest winner, writer/director Pete Jones.

As you can imagine, she was thrilled, delighted with the glossy photo of the film’s co-star, Bonnie Hunt, who’d kindly scrawled next to her signature, “It was great working with you, Natalie!”

I ran into Pete Jones at Starbucks recently, and the title of his movie has been in my mind ever since.  As the summer of 2014 passed into fall, I had the sense that it, too, had been stolen, or perhaps more accurately, simply lost.

It’s been nine months since my son’s move to an adult family home, the transition we planned for and agonized over for years.  I realize now how much hope I’d pinned to this move, how dearly I wanted it to mark a turning point in Daniel’s life, to be the moment when the rest of his life, his real life, began.

For months I’ve been holding my breath, my own life on pause, waiting for the transformation to unfold.

I knew enough to give it time, to allow him to settle, to adjust to the life-change this move would entail.  And he did adjust; he adjusted rather beautifully, falling into the routines of the new household, agreeable if distant companionship with his housemates, and affectionate, nurturing bonds with his caregivers.

He adjusted better than I did, in fact, unburdened by expectations honed over a dozen fretful years.  Perhaps this is one gift autism grants the people it affects as profoundly as it does my son: Daniel doesn’t realize that in the eyes of the system he is now an adult.

It took me all summer to recognize that I’ve been watching his childhood recede, and with it, the mindset when autism still seemed malleable, and open to improvement; where options and potential still shimmered with expectant possibility.  His move to the adult system, so long anticipated, now carried a more threatening measure of permanence, the grim recognition that this may be as good as it gets.

I should have seen this coming.  Rationally, I knew his behaviors wouldn’t magically disappear once he turned 22 and moved to a new living situation.  His obsessions moved with him, stubborn, baffling, hampering every new opportunity I’d allowed myself to dream would emerge at this stage of his life.  The off-grounds day program we imagined providing structure, purpose and meaning to his days was put on indefinite hold at the end of August, after repeated, disruptive episodes of beverage stealing and aggression.  Staff now provide a “home-based” program, involving scheduled chores, neighborhood walks, visits to the animal shelter: modest pursuits within the safety zone, the scope of Daniel’s tolerance.

I knew this was possible, even likely.  I hoped anyway, and clung to the nebulous but cherished future I’ve been envisioning for my son for years.

All summer I waited for it to get better, even as I understood that whatever “better” means now is light years away from what “better” used to mean, once upon a time.  For months I’ve been laden by an inertia I don’t fully understand, except the vague fear that the best days of my son’s life are behind him, the sense of possibility I’ve clung to for years now gone.

I don’t know if this is true; my fear may be a purely defensive, reflexive response to disappointment, to a diagnosis I’ve been struggling to reconcile for 20 years.  I pray that his life will evolve in ways that I can’t begin to imagine now.  But with the stakes so high — the rest of my son’s life on the line — I can’t bring myself to let go and “trust in the process,” as we are told to do.  That kind of simplistic adage has never cut it for me, not where my children are concerned.

Yet I’m no longer Daniel’s caregiver; I haven’t been for nearly seven years.  Accepting that I could not care for him nearly broke me, left me stunned, powerless to degrees I’m still discovering.  The sorrow of letting him go, the dank, potent guilt of it, keeps me from “turning it over,” from trusting that his life will unfold as it is meant to, even when that faith is the only thing left to cling to.

Instead, I spent the fleeting summer of 2014 in a cocoon of rigid, frightened watchfulness, eyes fixed on a prize I already knew wouldn’t be won.

We dreaded the shift to adult living, the ominous milestone hanging over the head of each parent of a profoundly disabled child. It took three years to secure Daniel’s placement, and when we finally had it, I was buoyed by a surge of optimism that carried me right over the edge.  The new beginning we were hoping for proved merely more of the same, a change of environment scant armament against so powerful a foe as autism.

My disillusionment crippled me all summer.  I accomplished almost nothing, focusing my impotent attention on Daniel’s progress down the same, narrow path he’s been traveling for years.  I must have been aiming higher than I realized, back in January, when he took to his new home with ease, laughing and smiling by the end of that long day when he arrived, officially, at adulthood.  It seemed like such a good omen at the time.  I feel betrayed by my reckless optimism in the face of his troubled history, by the exuberance that let me forget, just briefly, that autism is lifelong.

This summer wasn’t stolen.  It was simply lost to me.

I can let go of that now, though, and write about it, even while wrestling, still, to understand my reactions.  The journey of acceptance is lifelong, too.  I’ll be traveling this path for the rest of my life, my real life, as well.

There are summers yet to come, in my lifetime and in Daniel’s, opportunities still for discovery, for steps that may lead, one day, beyond the path he is traveling now.

This summer is gone, but Daniel is still with me.

He will always be with me.