by Kristen -

What I Have

IMG_4252 - Version 2

Considering how mundane it was, the photo I posted on Facebook received a gratifying number of “likes.”  Just the two of us at a picnic table on a summer day, Daniel wearing the unnatural grin he invariably supplies when told to smile.

By social media standards, life with my son won’t win any awards for excitement or variety.  We have few adventures to chronicle, no photos of thrill-packed vacations, sports triumphs or covetable jobs over which to humblebrag.  Our interactions are more modest affairs, and ever more predictable.

My friends are sensitive to Daniel’s challenges, though, and supportive of my longing to connect with him after the nearly eight years he’s lived away from home.  Their likes and kind comments mean a lot to me, and I recognize that their acknowledgment is one of the reasons I post photos of us at all.

I wonder sometimes if I’m actually seeking encouragement, a kind of validation that these unremarkable visits with my son are indeed worthwhile, that their value exceeds my own longing for something more.  Because I feel more like a spectator than the woman once at the center of his world.

In my lowest moments, I question my relevance to Daniel’s life now that he’s a young man, cared for so efficiently by a team specifically trained to address his needs, the behaviors that rendered my care for him obsolete.

I was told to expect a change in our relationship when Daniel moved to this group home eight months ago, a shift in our interactions now that I’m no longer steward of his care, freed from those demands to explore a more satisfying connection as he enters adulthood.

As he’s been out of my care for years, however, this prediction never quite rang true, and I’m beginning to doubt it will ever apply to the two of us.  More than ever before I feel I’ve lost my footing as his mother, this part-time role I’ve been playing since Daniel was just 15.

Or maybe I can’t accept that the path beneath my feet may be the one we’ll be traveling from now on.

The scripts for our visits seem to be written before I arrive, and I brace in advance for the ache of resignation which follows me home.  I know how these visits will unfold, week after week, the joy of seeing my son tempered by longing for the deeper involvement that’s been missing for months.  Crossing into Wisconsin on that dazzling summer morning, the caption for the photo I’d later post to Facebook had already formed in my mind, clear as storm cloud:  Picnic with Daniel on a beautiful day.  It’s not enough.  But it’s what I have.

*****

We met at a local park, and sat together while Daniel tore through the sticker book I’d brought him, affixing the familiar images in their slots as he’s done hundreds of times before.  I stroked his arm and caressed his summer-short hair, deflecting as best I could his repeated requests for the soda stashed in my car, his treat for after lunch.  His obsessions have intensified over the last few years, and his associations of me, what he counts on when I come, are rigidly defined.  There is so little I can give him now.  I don’t know how to break the cycle we are enmeshed in, how to change the tenor of our engagement without breaking his heart.

Perhaps I should have tried taking a walk, just the two of us, free of the eyes and ears of the aide who accompanies him wherever he goes, even on my visits.  It’s been months since I’ve been alone with my son.  The compulsive behaviors we are working to modify are too unpredictable to trust managing on my own, seem to be triggered, in fact, by my presence.  Old patterns are difficult to break with autism.  Memories of losing control of my son remain, vivid, haunting and formidable.

Yet time with him has come to feel like mandated, supervised visitation, the structure in place to help him dictating the terms of our relationship.  I miss time alone with him, privacy as I mother him the only way I can:  tender, murmured endearments meant only for him, cuddles and hugs that leave me self-conscious when witnessed by caregivers who never knew my son as a boy, when he was, first and foremost, my child.

I’m ashamed to admit that I crave freedom from the support he so desperately needs, the scrutiny of onlookers I sense weighing my effectiveness with this special young man who used to be my own.  The very competency of the staff rakes the embers of my doubt, which has smoldered for years; the guilt that my own care for him was ultimately not enough.  I am an interloper, an addendum to the life he is leading now, a life fuller and richer than he’s experienced in years.

I don’t know how to reconcile this sense of loss derived from what should be celebrated, the normal development of my child as he learns a new life apart from me.  The bond I’ve been longing to recapture since the day he left home is swaying now under the weight of distance, of time lost long ago.

There is a history I’m still reaching for, written through physical proximity, through countless days of bathing and dressing and snuggling and tickling, of high fives and blown bubbles and brushed hair, of tied shoes and trimmed fingernails, of tedious car rides and leisurely walks on autumn afternoons.  A history composed as I fixed meals under his curious eye, enjoyed in companionable silence or giggling banter, unfolding from our seats in the bleachers while we clapped in delight as the dolphins he once loved leapt and splashed at the Shedd Aquarium.

It’s a rhythm scored over years speaking a language without words, weathering together the outbursts and tantrums and setbacks, savoring the small triumphs of our uncommon life together.  While resting side by side against his headboard, books or flashcards across our knees; as night after night I tossed his stuffed animals onto the bed as he called for them, laughing, by name:  “Zebra!” “Cow!” “Wolf!”  It was written by the warmth of my hand across his forehead as I kissed him once more, and once more again, before turning off the light.  “Good night, sweet Daniel.  I love you, Daniel, my sweet, beautiful boy.”

*****

It would be simpler, wouldn’t it, to accept that he’s moved naturally into a new phase of life, and embrace with gratitude all the good that life offers now, the opportunities the framework of this life provides?  Perhaps he is more content than I can possibly understand, taking all he needs from me and our unexceptional visits, the routine we’ve established, the mild experiences of my Facebook posts.

But I believe his life will not be complete without me, and the rest of his family, at the core of it, and I can’t rest until I find that place again.  The procedural support is in place to help shift his behavior in a more positive, independent direction.  But he needs the emotional nourishment of his mother, too; of all of us who have loved him without question for a lifetime, whose love transcends all circumstance.

I’m not ready to concede that this is enough, that superficial visits are as good as it gets with my son, or our relationship to one another.  No line will be drawn beneath Daniel’s life, or my experience with him.  I have a role that only I can play, even as I stumble and gasp and bungle my lines.  Letting go of my dreams for him has never been an option.  Acquiescence to a lesser experience would weaken my fight for him, my advocacy, my hope.

That hope is painful sometimes.  But it’s what I have.

by Kristen -

Cornered

Cornered

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

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

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

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

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

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

The car I now realized had stalled.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Why didn’t everyone understand that?

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

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

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

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

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

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

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

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

 

“Cornered” image by StocksbyAnna

by Kristen -

New Light

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When my son was ten years old I read an essay by Chicago writer and educator Robert Hughes, “Getting to Know the Family Savant.”  He described the painful process of abandoning the “great cosmic myth of compensation”: that autistic people are automatically gifted with some extraordinary genius — a talent for music, an aptitude for languages, a startling, photographic memory.

Instead, Hughes gradually realized that his son Walker’s true gift was simpler, but no less valuable: his exuberance for life, his innate, irrepressible joy, visible “…on the face of the beaming boy himself, the knack for happiness he had then and has still.”

I was so moved by the essay that I wrote Mr. Hughes an embarrassingly long letter, thanking him for helping me recognize that, despite the devastating diagnosis of autism, my son, too, was happy; he was, in fact, the happiest person I knew.

I held that belief for a long time.  Despite his ups and downs, his extreme behaviors and outbursts, Daniel still seemed, for many years, satisfied with his life, unconcerned with what the wider world had to offer.  I consoled myself, believing he was content, secure, and confident that he was loved, that his autism even insulated him from the conflicting and messy emotions the rest of us regularly endure.

Over the last few years, though, my faith in that scenario has eroded.  As the degree and frequency of his outbursts increased, as his quirks became rigid, limiting obsessions, as the scope of his world devolved with each passing week, I began doubting that he could possibly be happy at all.  His behavior was screaming otherwise.

****

Never than in the past twelve months have I felt more powerless to help my son.  After an exhaustive search for his adult home, last January we selected a highly recommended care agency with a reputation for success with difficult behavior cases like Daniel.  As an added bonus, we knew the house director from Daniel’s previous school in Wisconsin.  Everything pointed to the positive and forward-moving experience we so wanted for our son.

Yet it didn’t materialize.  We soon recognized a pattern of erratic response from management to our questions and requests, from the very house director in which we’d placed such faith.  From home maintenance to haircuts to implementing the active and engaged lifestyle promised for Daniel, nothing panned out as planned.

His challenges became more entrenched than ever, with alarming new behaviors, like “elopement,” or bolting from the house, emerging after just a few months.  His day program, designed to provide purposeful, satisfying activity, fell through as his beverage-stealing obsession disrupted staff and clients alike.  By August he remained at home almost all the time, with little stimulation to channel his energy or the intelligence I’ve known for years he’s possessed beneath his unpredictable exterior.

No one in our family was satisfied, none of us willing to accept that this was as good as it would get for our cherished son and brother.  As parents in our situation understand all too well, however, the “obvious” solution — move him — was anything but simple.  Resources for people with Daniel’s challenges are scarce and hard to secure.

And even if we found an alternative, what impact would another move so soon have on Daniel, tearing him from the day to day caregivers whose devotion to him was never in question?  How would he react to another transition of this magnitude?  And the most haunting question of all: what if it still didn’t get better?

We’d given this agency more than a fair shot at managing Daniel’s needs, though, lending our support in every way possible. Waiting and hoping that life would improve for him there was no longer an option.

As it happened, another agency we’d seriously considered a year ago had kept in touch, their case manager checking periodically during the past twelve months on Daniel’s progress and adjustment to his new situation.  When our advocate from Wisconsin’s Department of Aging and Disability inquired in early November about Daniel’s possible transfer to their care, the case manager was enthusiastic, and immediately set the complicated application process in motion.

The ensuing weeks passed in a cascade of emails and phone conferences; discussion with the new agency and tours again of their facilities; a follow-up visit and in-person reassessment of Daniel at his current group home; and anxious, breathless days of waiting, of questioning and speculation, of daring, again, to hope that we might find the right path for our son.

In mid-December the case manager delivered the news: the new agency in Racine, an hour closer to both my husband and me, and Daniel’s father and step-mother, was willing to rearrange their current staffing and housing openings to accommodate Daniel, and offered him a place at one of their adult family homes.

They actively wanted our son.  They saw his potential, and believed they could help him achieve a fuller quality of life.

****

It’s been two and a half weeks since the bitterly cold day Daniel’s father and I said goodbye to him at his new home, a well-maintained, carefully decorated house on a quiet residential street.  His bedroom had been outfitted with new furniture, bedding, and artwork on the walls, a flat-screen TV and DVD player set up and waiting.  Staff was in place to welcome him, ready to manage whatever behaviors he threw their way, their philosophy of inclusion, of continual activity, stimulation and involvement in the community, regardless of challenges, an encouraging change from the restrictive environment Daniel had grown accustomed to in the past year.

Just hours later I received a “selfie” of Daniel and his case manager, Aaron, the man who had, in the week before the move, twice traveled an hour and a half to take Daniel on short excursions, so Daniel would know him and be more comfortable in his presence.  I couldn’t tear my gaze from that photo, Daniel’s face bearing the hint of an intrigued smile, as though he and Aaron were already sharing an adventure, something new and exciting and worth exploring.

The very next day Daniel went to an indoor water park, an activity he hasn’t enjoyed in years.  An emailed photo showed Dan waist-high in the pool, Aaron’s hand resting on his arm, guiding him, literally, through new waters with gentle, calm assurance. One week later, another pool photo: Daniel smiling broadly, confident, on his own in the pool, his face open and sparkling and alive, his eyes radiant with joy.

He’s made successful trips to restaurants, to Target and Sam’s Club and Starbucks, to a local museum; he navigated a company-wide “social” at a roller rink, only moderately distracted by the concession stand, which once would have derailed him completely.  These modest outings are huge for my son, whose compulsive behaviors had just weeks ago nearly eclipsed life outside his group home.  They are the activities we’d imagined for him, chances to discover, to grow, to be part of the larger world.

****

I approach hope sideways these days, wary now of plunging recklessly into the shimmering light of dreams, of believing too soon in the possibilities I want so desperately for my son.  The last year cured me of that, trusting in a shiny new beginning that became instead a slow-motion crash, each incremental slide more devastating than the last.

Yet there is no mistaking the new light in my son’s eyes, the expectation and curiosity that’s been missing for months.  He seems to recognize already that he’s on a new road, a different journey he is eager, now, to travel.  He is responding to staff’s repeated assurances that he is their “great guy,” their “kind guy,” their “happy guy.”

I hardly dare to believe it, but it seems to be so.

He is my happy guy again.

 

Robert Hughes responded to my letter in 2002 with a thoughtful letter of his own.  His kindness encouraged me to keep writing ever since.  His memoir about life with his son, “Running With Walker,” is available here.

by Kristen -

Train Wreck

train

My husband’s parents sold their house last year and moved to a condominium nearby.  We’re relieved that the move is behind them, and they’re no longer burdened by maintaining a home more spacious than they need.

I miss that house, though.  It was stunning.  When Andy and I got married nearly 15 years ago, his parents hosted our reception there, the elegant foyer with its wide, curving stairway providing an idyllic backdrop for toasts and tossing my bouquet.

I remember the first time I took my children to that house, on Christmas Eve a year before Andy and I were married.  I was still getting to know his parents and two sisters then, seeking my place in their family and hoping they liked me as much as I liked them.  They’d met Natalie at a family party the summer before, but were meeting my son for the first time that Christmas Eve.

The evening had all the makings of a magical Christmas, especially for my children.  The house was glowing with lights and decorations, full of welcoming family members eager to include us in their celebration.

The Christmas tree, 14 feet of Fraser Fir soaring in the two-story foyer, rivaled those on display in Marshall Field’s Walnut Room.  A life-sized stuffed tiger with a red ribbon around its neck sat waiting for Daniel under the tree.

Andy’s father had added a new component that year, an electric train set he’d always dreamed of, and set it up to encircle the tree, an engine and six quaint cars chugging along the 25 foot perimeter of the handmade tree skirt.

“We better keep an eye on Daniel around the train,” Andy murmured as we arrived at the house.  “It’s sort of Pop’s pride and joy.”

Wonderful, I thought miserably.  I was already anxious about his family meeting Daniel, my beautiful but erratic little boy, whose unpredictable behavior kept me constantly on edge.  Andy’s parents had no grandchildren, and I imagined my son barreling across their pristine, polished floors, shoes scuffing as he knocked vases from pedestals and grabbed gum drops from antique candy dishes.  Now I had to worry about him breaking an expensive toy train I knew he’d find fascinating.

But it wasn’t only Daniel’s behavior that had me so anxious that evening.  I recognize now how vulnerable I was back then, struggling to find my footing as a divorced mom, a role I’d never dreamed I’d end up playing.  My father had died a year earlier, and my mother was showing the first signs of Alzheimer’s disease.  Keeping my little family together on my own was exhausting, balancing the disparate needs of my children while trying to salvage the stability we’d rob them of when their father and I divorced.

The pressure I put on myself to make this happen was crippling, but I thought that was my role to play.  The least I could do, my most important job in the world, in fact, was making Christmas happy for my children.  Christmas had to be happy, it was supposed to be happy, and I would make it so if it killed me.

But playing my other new role at the same time was almost too much for me: the new girlfriend, this time with kids, one with special needs.  Fiercely proud of my son and daughter, I was still hyper aware of their behavior, and my own, measuring our conduct by a self-imposed standard of respectability and gentility I so wanted to achieve in the eyes of my boyfriend’s gracious family.

As the evening wore on, I was hanging by a thread, smiling, nodding, my most charming self on display for these people whose approval I sought, while inside I was screaming, breaking apart, desperate for this God-forsaken Christmas to be over so I could relax and let my guard down at last.

So much of those early years was like that for me, trying to control the events of my life but often tainting the very memories I wished to cherish.  Holding so tightly to the reins, I sometimes lost sight of where I had wanted to go.  Many times I succeeded in spite of myself, holding it together for my children, providing the experiences I had always wished for them.  But the cost to my psyche was high.  Anxiety became an integral part of me, and letting go of it, especially around the holidays, is still a work in progress.

As it happened, Daniel did enjoy the train that Christmas, watching intently as it made its way around the track, wiggling his fingers in front of his face as he does when he is happy.  He did nothing to disrupt its smooth operation.

But I did.

Leaning close to the tree to admire an ornament, my toe collided with the train’s engine, pushing it and the next three cars off track, bringing the whole happy unit to a halt.  The laugh was on me after all.

And I’m glad.  It was the first real laugh I had all evening.

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.