by Kristen -

Somebody That I Used to Know

Daniel58

Evidently I’ve been seeing myself all wrong.

This was made clear two days after my last birthday, as I stood checking my phone for emails while waiting in line at the post office.  There, a woman about ten years older than me swept in and called out cheerily, “I just love seeing seniors using cell phones!”

I received this news better than you might expect.  Too dumbfounded to take offense, I replied mildly that I had indeed entered official seniorhood just that week, but still thought of myself as young, hardly a grown-up at all.

“You know,” I continued, leaning forward confidentially, “besides using a cell phone, I still listen to rock and roll!”  I cocked a sly brow.  “And Eminem is, like, totally awesome!”

I’m afraid my hipness failed to register, but at least the woman next in line got a chuckle from my response.

That encounter made me wonder, though, if the self-image I’ve carried for years bears any resemblance to how others see me. My son’s recent move to a new living situation has me wondering, too, what impression I’m making on his care team, a vulnerability I didn’t anticipate after years of these transitions.

His case manager has advised us to expect a change in our relationship with Daniel, as he responds to a more challenging, stimulating environment, and we give up our roles as day-to-day caregivers.  We’ll gain freedom to enjoy more satisfying interactions, and be part of our son’s life on a deeper, more meaningful level.

“Your relationship won’t be better or worse,” Aaron has said a number of times, “just different.”

It’s a spiel I imagine him giving all the newbie parents letting go of children whose needs have so dramatically shaped their lives. For our children’s development to be successful, we parents must adjust just as they are doing.  It seems to be Aaron’s gentle way of telling us to back off now, and let them do their jobs, so our children can flourish in adulthood.

Yet I fear sometimes that his parental pep talk is aimed specifically at me, that he senses my longing to reclaim the boy I relinquished to residential care over seven years ago.  I imagine Aaron watching me, wary that I’ll sabotage Daniel’s progress through my neediness, my grief at having lost him once already, a grief that has never fully healed.

Does he see a woman clinging to an ideal already gone, the boy Daniel still was to me when he left home?  Back when I was the one who knew him best, the person he needed most, the one he sought, in his singular fashion, to comfort him?

Does he see a mother, whose son has spent nearly a third of his life away from home, pining blindly for the day he’ll come back? A mother threatened by her son’s move toward maturity, who fears losing more than she’s already lost?

As Daniel transitions into a new life, and the future I want for him actually seems possible, my relationship with him feels more tenuous than ever, and I know I am that woman, whether Aaron sees me this way or not.

It’s taken me the two months since his move to acknowledge that my relief and joy at Daniel’s encouraging start is tempered by an ache for the days when he was truly mine, before autism tore us apart; when his days began and ended with my voice, my touch, my assurances of a love that would last forever.  I recognize that a part of me has been waiting seven years to get him back, even as I’ve known this will never be so.  The son I once knew is gone for good.

I want to assure Aaron that he needn’t worry, that I’m an old hand at this:  I know all about letting go, the wrenching loss of doing what is best for my son.  And I know, too, the blessed, coveted freedom from the demands of caring for him, the opportunity to breathe again, to have my life again as my own.  I know that freedom, and I know its cost.

It is the gradual unraveling of our relationship, the fabric of our lives worn thin by time, by distance, by the insidious disorder that brought us to this place.  It is clutching the frayed edges of a bond that in all its mystery was once close and touchable, woven thick and warm and comforting through years of ordinary, intimate moments spent together, routines we made uniquely our own.

It is the recognition that in many ways my son is now a stranger, that mere visits couldn’t fully bridge the gulf between us as Daniel grew from child to young adult, miles away from home.  It is the sense that the best days with my son ended seven years ago; it is fearing that the lyrics of the Gotye song I so often listened to on my drives home from Wisconsin now apply to my own child:  Now you’re just somebody that I used to know.

Maybe Aaron sees me as a mother desperate for a time gone by.  He wouldn’t be wholly wrong.

But I am also a mother who has transitioned along with her son for over 20 years, a mother able to do so again.  I’m a mother profoundly grateful for this fresh chance, willing to learn a new way of connecting with my son, ready to be whatever he needs me, now, to be.  I am a mother who understands that love is not always enough, yet love remains more powerful than grief.

It’s Aaron’s role to ask us to step back and let go, to allow his team to guide my son toward the goals we believe he is capable of achieving.  And it’s my role to do so, to let go of the boy of my memory, and embrace the young man he’s become.

But there’s letting go, and there’s letting go.

My heart will not surrender all that has shaped our lives together, or my most cherished role as his mother.  That woman will always be right there, behind him.

I can’t see myself any other way.

by Kristen -

New Light

Image 3 - Version 3

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 -

One True Gift

Holding hands

As the parent of a teenager learning to drive I was an utter failure.  When Natalie took the wheel I was such a basket case that she soon banned me from accompanying her.  Instead, my husband took over, guiding her on trial runs in the St. Patrick’s Church parking lot, hopeful, perhaps, that God would protect them both.

Natalie proved to be a fine driver, however, while I remained a lousy passenger and unhelpful critic, clutching the dashboard and hissing in alarm as we neared other cars.  It’s a testament to her self-confidence that Natalie learned to drive at all.

She’d had her license for several months when she offered to take Daniel for ice cream one evening.  I stood on the grass as she backed down the driveway, shouting advice and directions, gesturing like a crazed traffic cop as she veered toward our neighbor’s lawn.

“You’re not helping!” Natalie yelled out the driver’s window as she inched toward the street.

“Be careful!” I cried redundantly.

“Yeah, yeah, yeah!” she yelled back, waving me off.

“Both hands on the wheel!” I bellowed in reply. “I mean it now!”

As she shifted from reverse into drive, I observed Daniel in the passenger seat, eyes scrunched tight and hands over his ears, desperate, no doubt, to block the din of our banter.  But as I teased Natalie later, it was as though he couldn’t bear to watch as he placed his life in his sister’s hands.

Eighteen months later our mood was less jovial as we moved Daniel to a residential school an hour and a half from home.  He was fifteen years old.  Seven years ago today I let go of my son, placing his welfare in the hands of people I barely knew, relying on faith that we were doing the right thing for our cherished, special child.  It was the most painful thing I’ve ever done.

I had several months to prepare, to accept that he could no longer be educated through conventional special ed channels, or safely cared for at home.  The school we’d chosen was highly regarded, known for its success with students with behavioral issues.  We toured and met the staff, asking every question we could think of.  I talked to friends whose own son resided at the school, comforted by their positive experience.  We were as confident as we could be that we were making the best decision possible under difficult and heartbreaking circumstances.

Yet there was no real way to prepare Daniel for the life-change ahead, to explain that our actions had his best interest at heart, that we’d done everything we could and it was still not enough.  Words could not convey to our non-verbal child our profound love as we left him, in an unfamiliar place, his care now in the hands of others.  My dark fear that he’d believe we’d abandoned him almost broke me as I clung to the fragments of my tattered, trembling faith.

After Daniel’s move I rarely practiced that faith, traveling to Wisconsin most Sunday mornings to visit him.  In truth I was glad for the excuse to leave the church behind.  My parents were both gone by then, their memories filling the space they helped build before I was born, the church of my childhood now imbued with more sorrow than comfort, awash in reminders of all that was lost too soon, the old hymns and liturgies haunting in their constancy, vestiges of what I once believed invulnerable.

A few weeks ago my nephew Ted was scheduled to read scripture at that church, which he attends regularly now, and Andy and I went, too, to be with him.  It was the first time I met the new pastor, installed just six weeks earlier.

“They say ‘America’s Got Talent,’ but I beg to differ,” she joked in her sermon, noting that reality TV rarely depicts a truly useful skill, a precious gift, or a worthwhile endeavor.

“The high school teacher who makes algebra come alive—that’s talent,” she continued.  “The farmer who coaxes seed into food.  The musician who brings tears to your eyes.  The parent whose children know they are loved.”

I missed much of what came next, suddenly back seven years to the third night after we’d left Daniel in Wisconsin.

We’d spoken every day to his floor manager, Kip Kussman, whom Daniel had taken to immediately, learning of his first days without us.  So far he’d adapted remarkably, Kip told us, better than most new residents.  We’d been advised not to visit for thirty days, but Daniel was adjusting so well that Kip thought we may be able to come sooner, possibly for Christmas.

My voice broke with relief and gratitude as I thanked him.

“Daniel is going to be fine,” Kip assured me.  “He is secure in a way I don’t see very often.  This is a child who knows that he is loved.”

I doubt Kip will ever understand how much those words meant to me, that they remain the most meaningful thing I’ve ever been told.

For all the ways I felt we’d failed him, we had given Daniel that one gift.

He knew that he was loved.  He knew that we would come for him again.

It’s been a turbulent few years with my son.  I wonder sometimes if he still knows the depth of my love for him, how I treasure him despite the distance that separates us, if he remembers the love I could once demonstrate each day, waking him in the morning and seeing him to bed at night.  I wonder what my weekly visits evoke in him, if they are like the old liturgies of my childhood, stirring memories of faith once held without question, the melodies now echoing both loss and promise.

Does he know me, still?  Does he remember?  Have the seven years he’s been gone blurred his sense of me, or do I remain one thing he knows to be true, to be constant, no matter what?  He asks for me, but what is he seeking now? Does the memory of my love wound in my absence, or is it one true gift that distance cannot diminish?

I don’t know the answers for sure.  But I keep faith that he does know, that he has always known, that I am with him, that he will always, always be loved.

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.