by Kristen -

Hopefully

Years ago, a friend of mine and her husband took their young son for surgery to correct a pectus excavatum, or “concave sternum.”  The condition wasn’t life threatening, but was noticeable and would likely worsen as he aged, interfering with sports or other physical activity.  He was about seven years old at the time.

The surgery involved a thin, steel rod — a knife, really — being inserted from the side of the chest, and pushed carefully behind the sternum to “pop” it out into place.  It was considered a routine procedure.

Sooner than expected, the surgeon appeared in the waiting room where my friend sat anxiously with her husband.

“We have a problem,” the doctor reported grimly.  The steel rod had accidentally nicked their son’s heart.  He was bleeding internally.

“But we think we can fix this,” the surgeon went on, and began explaining the correction they would attempt.

Stunned, my friend’s husband interrupted.  “Wait.  Wait.  Did I hear you correctly?  Did you say you think you can fix this?”

The surgeon looked him in the eye and somberly replied.  “Yes.  We think we can.”

*****

I used to say that the difference between my experience with my daughter and that of my son was that while I understood that any calamity could befall my daughter — she could get hit by a bus tomorrow — there remained a reasonable expectation that that would not happen.  It has never been so with Daniel.  Autism swept “reasonable” out of our lives.  Yet for years I sought reassurance that his life would, eventually, turn out ok, would merge onto a normal path, even, if you can imagine, that he’d be the miracle child who overcame the disorder.

I thought I’d reached a point of acceptance that such assurances are not to be, even believing I could live without them, that I’d adjusted to the constant ebb and flow of his life.  I realize now that I haven’t reached that place after all.

Several months ago my son’s group home manager, Kristen, regretfully informed me that Daniel could no longer be safely cared for at his current residence, the home we’ve loved, where he’s seemed to flourish for two and a half years.  They felt they had no choice but to give the obligatory “30-day notice” that a new placement for our son was necessary.

This shouldn’t have come as the blow it did.  There had been incidents, serious ones, during the last few months.  In February, Daniel’s beverage obsession drove him to drink windshield wiper fluid he’d spotted in a neighbor’s garage.  He spent three days in the hospital undergoing dialysis to flush the toxin from his system.  Just weeks later, he eloped to another neighbor’s house, barged through their front door, and began guzzling from a gallon of milk in their refrigerator.

I knew about these episodes, even recognized uneasily that they were escalating.  Despite his challenges, however, we’ve been happy with the overall quality of his life, the attention he receives, grateful for the opportunities he’s had to experience at least some of the larger world.  He enjoys a unique, hard-won bond with his primary caregiver.  It’s been the best place Daniel has lived for years.

Yet in retrospect I wonder if I’d been intentionally blind, unable to face the inevitable consequences of behaviors we’ve struggled for years to understand, desperate for a break from the relentless worry of parenting a severely autistic child.  Distracted, too, by the demands of running for re-election for my job as township clerk, perhaps I could handle only so much stress at a time.  Was the campaign my excuse to shut my eyes, for a few precious months, to the chronic challenges autism presents, even as my subconscious warned of a crisis, the culmination of fears I’ve harbored for his lifetime?

Kristen described an alternative they had in mind, a “one-on-one” placement ten minutes from his current home.  The new house would be equipped with an electromagnetic locking system to prevent elopements, a feature unavailable in his current home, designated as an unlocked facility.  His care team would transfer with him, lessening the impact of the move.

Everyone, she told me, agreed that this arrangement is what Daniel needs, for his own safety and that of others: his case supervisor at the managed care organization we work with to oversee his residential needs, their behaviorist, their nurse.  Everyone except the contract department, which controls the flow of funding.  They rejected it as too expensive, and directed the MCO to look elsewhere, to find another agency, another Adult Family Home, otherwise known as a group home, capable of managing Daniel.

“We want to keep Daniel with us,” Kristen told me.  “His behaviors are difficult, and we don’t want him to end up in Southern.”  She was referring to a multi-bed facility in southern Wisconsin, the kind of sprawling institution that’s the stuff of nightmares for parents like me.

I should have known these words were coming, words I told myself again and again to prepare for.

But I wasn’t prepared.  I wasn’t ready to learn that yet another living situation had failed, that his behavior was more than even this capable staff could handle, that we needed to start again.

I wasn’t ready to hear the word “institution” in relation to my son.

*****

That night I had to attend a campaign function featuring a national political figure, and set aside my panic over Daniel to interact with nearly a hundred jovial attendees.  I don’t know how I did it, but it must have been effective; my emotional shut-down carried through the weekend.  I didn’t — simply couldn’t — talk to anyone, not my closest friend or even my daughter, unable to face questions for which I had no answers, or probe a situation that left me breathless.  Holding the knot of fear and despair inside my chest was easier than facing it, than acknowledging again the powerlessness I’ve so often experienced in the course of Daniel’s life.

My husband understood this.  When I came home from work the following Tuesday he was on the phone, speaking to the supervisor of the managed care agency, trying to gather information on what came next, how we could fight the denial of the alternative our agency had offered.  He was told emphatically that the proposed home was not an option, but that the MCO would begin a search for another placement for our son.

“Hopefully,” she added, “it will be an Adult Family Home.”

“What does that mean?” I asked frantically when Andy hung up the phone.  “What does she mean, ‘hopefully’ an Adult Family Home?  As opposed to what?”

He didn’t need to answer.  I already knew.

*****

I’ve spent weeks reflecting on why that word crushed me as it did, why it evoked the opposite of its intention, that of encouragement, optimism, possibility.  I remember the desolation that washed over me, the certainty that no matter the outcome of this latest challenge, this particular piece of shitty, that there would be more to come; that after all these years nothing has become easier, we are still battling a war we can’t win.  We are still only at hopefully.

And hopefully isn’t enough where your child is concerned, yet that’s what we’ve been working with for years.  Now my longstanding fear that we’d lose my beautiful, bright and loving son to an institution was an actual possibility.  The shadowy menace held in the dark of my heart had taken shape, ready and waiting.

Autism is years of hopefullys, of fervent, desperate prayers that the next situation, or therapy, or medication, will make a difference, only to face again the inescapable truth that the disorder is lifelong.  “Hopefully” had turned on me, and I hid in my insulated bubble of mute fear for weeks as the situation unfolded, paralyzed, unable to write, or even discuss it with family or friends.

It had beaten me.  I was done.

Except we don’t get to be done when we’re parents.

*****

To explain the bureaucracy involved in the resolution of this crisis would take pages, and this blog is too long already.  Suffice it to say that things got worse before they got better.  The neighbors whose house Daniel had busted into back in March had called the police, and eventually the local newspaper.  Articles were published calling my son’s actions a “home invasion,” which left the occupant “traumatized.”  Readers commented online, including one who opined that people “like that” should not be allowed in the community but in institutions where they belong.

For several weeks it appeared that the only agency willing to accept our notorious son was a brand-new outfit in Fond du Lac, two hours further north, operating just one home, a dim, cramped, duplexed house with no fenced yard and owners comfortable with “restraint” when necessary.

It took two agonizing months, but in the end we got what we wanted.  Andy tells me that I played it perfectly, breaking from my paralysis precisely when necessary to move the process toward our goal.  I don’t know if that’s true, or if we were just lucky.  The owner of our current agency reduced the service rate originally proposed, leaving the contract department no excuse to deny his placement in the alternative house.  Daniel moved to his new, secure home a few days ago.  He seems comfortable there, happy.

On that first awful night of Kristen’s call, Daniel’s father Jeff told me to hang in there.  “Things always work out for Dan Man,” he reminded me.  I don’t have such trust in a larger plan right now, unable to forget the fundamental truth that things didn’t work out so well for Daniel, that his life was royally screwed before he ever had a chance.  I tell myself that I won’t be duped again.

A few weeks ago, though, Andy and I drove by the new house, which I’d toured but Andy hadn’t yet seen.  It’s a tidy, light-filled home with a swing in the backyard.  I can picture Daniel there, swaying gently as he blows his bubbles, shaded by the maple tree behind him, his aide Brittany by his side.

On our way back to the highway we passed a park where Daniel and I had shared a picnic two years ago, and without thinking I exclaimed, “Look!  That’s where we came that first summer!”  I laughed with exuberance. “Maybe, when things settle down, we can go there again…”

Hope remains resilient.  Or so it seems.

 

My friends’ son survived the accident on the operating table, and is now a handsome, heathy 27-year-old.

by Kristen -

Truly, deeply

IMG_1606

Cynic that I am, the self-help genre typically leaves me cold.  Advice that sounds good in theory often breaks down in practice. Rarely can inspirational books or how-to articles speak inclusively to the nuanced circumstances of individual lives; people are just too messy, too complicated for that.  And self-improvement, of course, is no picnic, letting go of long-held ideas even harder.

Unsurprisingly, however, I couldn’t resist an article from O Magazine entitled “Life’s Not Fair,” in which author Martha Beck contends that it’s possible to face this fact with grace.  We just need to stop expecting life’s vending machine to mete out justice simply by inserting virtue.

Having never considered myself particularly virtuous, I continued reading anyway.

“Try this,” the author encouraged.  “Define virtue as living in perfect alignment with what you most deeply feel to be true, and happiness as an upwelling of joy that arises directly from this alignment, regardless of external factors.”

Huh?

I was stumped already.  What I most deeply feel to be true?  What do I most deeply feel to be true?

I realized I had no answer.

Distraught, I posed the question to my husband.  Fortunately, he took my consternation seriously.

“I don’t think there’s just one answer, for anyone,” Andy reflected.  “But I’d say one thing I truly believe is that sharing our lives and our burdens with other people is always beneficial.”  Or something along those lines.

Well, that wasn’t so hard, I thought, relieved that meaningful truth didn’t necessarily imply a grandiose doctrine involving infinite faith, love conquering all, or everything happening for a reason.

This kind of question has actually troubled me for years, my inability to define, even to myself, what I “hold to be true” a source of secret shame.  Only a shallow, insubstantial person can’t state categorically the principles upon which her life has been built. Right?

Oh, I know with unwavering certainty that I love my children, that I would willingly die for them, but surely that doesn’t count. Every parent feels that way.  Loving our children beyond measure is a given, a freebie answer.  My devotion to my own doesn’t set me apart, define the deepest part of my soul.

Yet I don’t recall being concerned with such questions before I had children, back when a bountiful, contented life seemed inevitable, when, with appalling arrogance, I believed the future would unfold precisely as I pleased.

In fairness, I had no call to imagine that my life would one day collapse so dramatically.  Who really does?  Besides, by my late twenties I’d already faced what I thought would be the defining challenge of my life, too naive then to understand that our lives rarely hold just one.

In the aftermath of Daniel’s diagnosis, self-reflection became an indulgence swept away by adjustment to a truth no parent is prepared for, which no platitude or pep talk or insipid essay about Holland being as good as Italy can resolve.  In the process, the groundwork of my life fell away, piece by piece: My storybook marriage fractured with the weight of our grief; my father — my safe harbor, my rock — died when Daniel was barely six years old.  And my mother, the woman who did it all, apparently met her match in Daniel’s disorder.  “I don’t know anything about autism,” she told me.  “You’re going to have to handle this on your own.”

There was no truth left to bank on, except my furious love for my children.  And I was failing them both.

All the research and resources and therapies, the saccharine stories of autistic prom queens and unlikely basketball stars, couldn’t ease the crush of despair, the fact that my son’s life had been stolen, that his condition would last forever.  This was my truth, however I tried to twist it.

That didn’t stop me from seeking a way around it, though, pursuing with fervid intensity a tenable explanation for the inexplicable; that one, precise set of words that would reconcile something so devastating.  I talked to people incessantly, my needy desperation driving many of them away.  A succession of clergy and therapists, friends near and tangential, self-help groups, the support group I formed myself, the hapless clerk at the hardware store — surely the path to acceptance could be found if I kept asking, if I demanded one hard enough.

It didn’t work that way for me.  Despair turned to rage, to bitterness, to final, awful acknowledgement of the truth I knew in my heart all along: the explanation I sought was not to be found.

And yet the most valuable answer turned out to be no answer at all.  Huddled, weeping, in the office of my longtime pastor, a man I’ve known now over 40 years, I poured my sorrow at his feet, imploring him to explain the vagrancies of God’s will, the arbitrary nature of his benevolence, his healing, his grace.  If anyone could answer the “why” of Daniel’s fate, it would be this man I’d trusted since I was ten years old.

He listened to me for a long time, hands clasped between his knees, then looked me straight in the eye. The pain on his face mirrored my own.

“I don’t know,” he told me quietly. “Kristen, I just don’t know.”

Did he understand the power of that admission, the relief he endowed by telling me that truth?  For if this man, who was supposed to know the answer, could concede that he did not, maybe I could bear living without the answer, too.

I no longer probe that wound so relentlessly.  I have my answer: I will never know.

We try so hard to finesse things, to make palatable the most bitter of truths, find an angle to bridge the gap of all circumstance. Yet those are rare on the ground.  As my husband puts it, “Everyone has their Waterloo.”  No matter how we spin it, the truths of our lives remain true.

My son has autism.  His condition is lifelong.  This is true, and there is nothing I will ever read or hear or contrive that will make it less so.

Acknowledging this, though, has softened the strain, the exhausting search for a way around it.  I continue to grieve, more often lately as we live through another transition with our son.  I will never stop mourning what he has lost.  Trauma changes us.  Long-standing crisis and uncertainty leave us watchful, guarded, suspicious of the things we once counted upon, even during periods of relative calm.  Profound disability in our children warps the people we once thought ourselves to be, or planned to become, one day.

Other parents have endured this more gracefully, and I’m often ashamed that I can’t behave as they have learned to do.  But I’ve yet to meet one of them untarnished by the indelible mark of this sorrow, this regret, this truth.

Yet in fellowship with them I know growth remains possible.  Andy, for instance, playfully reminded me yesterday that six months into sharing this blog I declared, out of the blue, “I’m really tired of being a bitch.”  I haven’t made a convincing recovery on that front, but the possibility of healing exists, one faltering footstep at a time.

I know also that parenting has brought me the most profound joy I’ll ever experience, even as it tears me apart.  No grief is more powerful than the beauty that shimmers from the remnants of the life I once thought was mine.

The answers I craved so desperately still haunt me sometimes.  But I can go forward without them.

Hope is powerful.  Joy remains.

This, at least, I know is true.

by Kristen -

If the jeans fit…

jeans

A New York mother has been making news recently for her clothing line aimed at youth with autism, and other disabilities that can turn getting dressed into an exhausting, time-consuming affair.

For years, Lauren Thierry’s autistic son pulled his shirts on backwards or struggled to zip up his jeans.  So Thierry came up with a solution.

Her “Independence Day Clothing” collection has no zippers, buttons, or tags, and both tops and bottoms are completely reversible.  Apparently they’re a cinch to put on, with no scratchy lace or fancy piping to exacerbate sensory integration issues. Garments can even be equipped with GPS trackers for kids prone to wandering.  And, says the woman behind the line, the clothes are hip to boot, featuring styles any young person would willingly choose to wear.

For parents grappling with autism’s incessant demands, the idea seems to have taken off.

Now why didn’t I think of that?  I’m schooled in the challenges of raising a child with autism, after all, the getting-dressed-ordeal just one of a slew we faced every day.

Like Thierry’s, my son needed continual prompting with everyday tasks that typical kids eventually master on their own: bathing, grooming, eating, and putting clothes on in the morning.

A former news anchor for CNN, Thierry recognized that the simple act of getting autistic children dressed can be like navigating a “grueling obstacle course.”  Independence Day’s “utility design” is the first of its kind, she says, the equivalent to mainstream clothing outlets like Gap, Abercrombie or J.Crew, but designed specifically to help the disabled population fit in.

If only I’d hatched this clever plan!  Then I’d be the genius-mom brightening news snippets, recounting the evolution of my brainstorm.  My smiling face would be popping up all over Facebook as the disabilities community heralded my brilliant, sanity-saving concept.  I’d be the proprietor of a sleek, well-designed website already sold out of nearly half its wares, gobbled up by parents grateful for tangible help at last.

I could have been a clothing contender.

Oh, who am I kidding?

When my son was young I was lucky to get myself dressed for work before the day exploded, much less devise innovative clothing options for the disabled in my spare time.  My creative energies were spent pondering Daniel’s preference for animal flashcards over those with more practical applications, or why he could blow bubbles with uncanny dexterity but fail to pull his shoelaces tight enough to keep his sneakers on.

Consultations with behaviorists to analyze my son’s random biting attacks edged out meetings with clothing designers or marketing pros.  Putting my house back together at day’s end trumped putting the finishing touches on reversible rugby shirts, hands down.

The truth is, I just didn’t have the energy to be an autism mom and a groundbreaking entrepreneur, too.  My sensory-friendly hat is well and truly off to Ms. Thierry, who seems, somehow, to have successfully done both.

As it happened, getting dressed wasn’t one of Daniel’s main challenges, anyway.  After selecting his day’s ensemble, I could be reasonably sure he’d emerge downstairs wearing it, with just a sock adjustment or button alignment necessary before his bus arrived in the driveway.

In retrospect, what I really needed was a magic laundry fairy to ensure that the clothes I’d washed and folded were placed in their appropriate drawers.

If that innovation had been available when my son was twelve, Daniel may not have gone to school one day wearing a pair of my jeans.

Jeans he’d pulled on, zipped up, and buttoned by himself, just fine.

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 -

Letting Go of Sisyphus

Sisyphus

I wrote this essay 12 years ago, and am struck by how much has changed since that time, and how much is still the same.  

The call from my son’s teacher caught me off guard that Tuesday afternoon.  Daniel had bitten again, this time another child, his peer buddy from the integrated classroom.

Despite a history of such incidents, the news was a blow, and I chastised myself for breaking down.  This was old ground, after all.  My son is 11 years old, and I am seasoned at this game, an old hand at the mercurial nature of this disorder.  An expert at setbacks, of despairing quietly alone, or ranting wildly to anyone at hand.  Of trying new tactics and behavior plans, of adjusting medication, of learning physical restraints to subdue without injury.

I am an veteran now, of autism: hanging on, living through, never, never giving up.

My son had excelled in recent months, with a new interest in words and flashcards, proficiency on the computer, the endearing habit of shadowing me as I moved throughout our home.  More than ever before he sought our company, remarkable in relation to the isolated, self-contained world he so often preferred.  These modest gains were welcome respite from the struggles with behavior, the anxiety that pervaded my thoughts each day.

Now his progress seemed a cruel sham.

“I was set up,” I thought desperately, as his teacher detailed the circumstances of the latest incident.  “He is past that now, he must be past that now.”

The “bitee,” my son’s peer buddy, was just fine, handling this un-buddy-like display with surprising maturity, testimony, perhaps, to sensitivity training: the blending of children like my boy with normally developing children, whose ups and downs do not include raging, aggressive outbursts, like the one later that same Tuesday morning during community training at the mall. That episode required full body restraint, twice, by his teacher, in the middle of the food court.

People stared, of course, and wondered what was wrong with my child, who appears normal, on the surface; who is, in fact, beautiful.  I can say that, you know, unashamed: he is beautiful.  He has that going for him.

****

We are working on the animal cards tonight.  He struggles to decipher the name of the animal printed on one side, waiting for the moment I turn the card, and he sees the picture, for he knows dozens of animals now by sight.

“Deh.”  “Rahba.”  “Tee-ah”.  Deer.  Rabbit.  Tiger.  Speech apraxia makes discerning his words difficult, but I understand him.  He is learning.  He watches my lips for a hint: earnest, heartrending, trying so hard to gain a skill so burdensome.

“Cah.”  “Whey.”  Cat.  Whale.

Good job, Daniel.  High five.

****

I fear, in the bleak moments like Tuesday afternoon, that this disorder will engulf me, the person I could have become washed away by the demands of caring for this boy, of loving him so dearly.  I see myself forced to assume a role I’m incapable of performing, certainly not performing well.  My hold is weakening on the half-formed dream that someday – soon – I’ll begin my real life, my chance to become the person I’d envisioned fading with each passing day: a person of worth, of accomplishment, of substance.

Reading the loose script drafted for my son and me, I sense that key themes of my life have already been written, that I will not so much forge my own identity as step faltering into one chosen on my behalf.  Ready or not, I must adapt: as a warrior, an advocate, a wretched Sisyphus pushing a rock up a hill, laden by numb certainty that it will fall, again, and again, and again.  I know now that another teacher’s call will come, another incident demanding attention, or remedy, or stop-gap solution, sapping the energy and time and will to discover the real person I was supposed to be.

Other parents seem to manage better than I do, adjusting to these circumstances more gracefully, understanding, perhaps, that success is most fully measured by our ability to meet with dignity the unwelcome demands which touch all our lives.  I am ashamed of my struggle to find meaning from this challenge.  God picked me, after all, to mother this special child, so He must think I’m very special.  Or so I’ve been told.  Sure, I wanted to be special; this just isn’t the kind of special I had in mind.

I’d rather cling to the clouding image of the life I thought I’d lead, grasping an ice sculpture after the party when the guests are gone, as it slowly melts in my hands, little pieces of my life dripping away until its shape is unrecognizable.  Oh, yes, I want to hold on. Denial is preferable to facing the dark fear that my legacy will be my failure to give my son a normal life; that even my profound love for him will not make him well; that the best I can do is keep pushing a rock and never give up.

****

“Zee-ah.”  “Duh.”  Zebra.  Duck.  Always tap the raccoon card because its tail is distinctive.  Unlikely to read by conventional methods, Daniel progresses slowly, one word at a time.  We hope to build a sight vocabulary through painstaking repetition.  “Aight.”  Alligator.  I stroke his neck when we come to giraffe and comment, “See how long this is!”  As I turn the next card he watches my face and I want so much to cheat and help him.  “Wah,” he says.  Walrus!  There is no joy more stunning than his pride as I cry with delight, “Good boy, Daniel!  My smart, beautiful boy!”  You will read someday if it takes us ten years.  You can learn to read …

****

Oh, and they say that God does for us what we can’t do for ourselves.  Kicking and screaming, it seems I am becoming what I wanted to be all along.  What a painful path to understanding that while I longed to be “exceptional,” I was unprepared for circumstances that truly are so.  How slow I’ve been to recognize that the challenges I’ve been fighting have made me more than I was, forced me to become a woman with more on her mind than what to serve at her next dinner party.  The real life I’ve been waiting for is here, with these flashcards, and they are my salvation.

****

It’s a difficult evening, and we are alone together.  Undefined discontent, expressed through Daniel’s whining and floor-flopping, has been simmering all afternoon.  “Just an hour until bedtime,” I tell myself.  “Just an hour more to go.”

The phone rings, and I converse distractedly with a friend.  Daniel joins me on the sofa, back arching and crabby, thrusting a packet of flashcards in my lap.  They are the more difficult set of animals, words he has not yet mastered.  I would have preferred a more familiar exercise to calm him and possibly avert a tantrum.  Winding down my conversation I begin holding up cards, the pictures facing away from him, trying to concentrate on my friend’s words.  I hear my son’s frustration as he struggles with a word he hasn’t memorized.  And giving him now my full attention I see him tapping his neck.

Giraffe.  He recognizes the word giraffe.

The rock doesn’t seem so heavy just now.

We went up the hill today.