by Kristen -

Pizza, interrupted

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

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

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

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

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

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

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

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

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

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

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

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

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

Unfortunately, the girl couldn’t seem to resist.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I looked down at our napkin strewn table.

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

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

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

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

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

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

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

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

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

 

by Kristen -

Bon Appetit and Goodbye

Pancakes

I wrote this essay seven and a half years ago, several months after moving my son to a residential school an hour and a half from home.  Reading it today, I’m surprised at its lighthearted tone, when my heart had so recently broken.  I understand now my need to fend off a loss so deep I couldn’t fully acknowledge it all at once.  Nevertheless, I like this piece, which reflects my feelings around the changes in our family at that time.  I hope you’ll enjoy it, too.  —Kristen 

 

By the time I learned to cook it was too late.  And by learning to cook I mean finding the right cookbook, brimming with simple but enticing recipes for the culinarily unimaginative, no trip to Foodstuffs required.  After years recycling the same six or seven meals week after ho-hum week, “Weeknight Meals for Busy Moms” seemed like a godsend.

Except I’m not really a mom anymore, not in the sense that has defined me for so long.  My son no longer lives with me, and my daughter has one foot out the door, leaving for college in less than six months.  My husband’s schedule is erratic, bringing him home some evenings as late at 9 p.m.

Which leaves me alone in the kitchen, a slate of brand new family recipes on tap, my family no longer at the table.

“Wait!  Wait!” I want to cry.  “I’ve got it together now!  June Cleaver is in the house!”

But time waits for no mom.  I recognize the irony of finally mastering the art of the family meal just as my family scatters to the winds, symbolic of the loss I feel around the changes of the last three months, and those that are yet to come.

It wasn’t as if I didn’t try.  But the vaguely held images of well-balanced meals prepared with unhurried competence, then shared at a cozy table by my serene and typical family, never fully (or even partially, actually) materialized in real life.  More often I recall slapping together meals of rotini with a side of orange slices, or scrambled eggs and toast, if I hadn’t forgotten to buy bread.

And my family isn’t all that easy to please, either.  As a boy, my son displayed disdain for most every food offering (even those in my famous Top Five) only satisfying my frenetic attempts to nourish him with an occasional cup of lo-cal lemon yogurt.  During adolescence, when his growing appetite placed him in the “clean your plate and then some” club, my daughter’s willingness to eat virtually anything with calories diminished to the alarming but typical proportions of a teenage girl.

My husband, meanwhile, eats nothing containing butter, sour cream, cream cheese, cheese sauce, mayonnaise, hollandaise, béarnaise or any other coating, while alternately clamoring for more steamed vegetables and asking why I didn’t buy cookies at Costco.

So many of my half-formed ideas of what “family” means have reluctantly shifted since I had a family of my own.  The demands of parenting a truly atypical child were greater than I could have dreamed possible, and what I’d considered “normal” and “healthy” and “secure” flew out the window in the face of my son’s disability.

Mealtimes were just one of a slew of ordinary experiences impeded by his unique needs.  Eating in restaurants, family vacations, doctor visits, attending a movie or strolling the zoo; Sunday school, music recitals, a walk in the neighborhood, buying an ice cream cone – each formative and familial experience I had envisioned for my children took on new and often forbidding overtones in the world of autism.

My son’s move almost three months ago to a residential school for developmentally disabled children should have brought a welcome normalcy to our home, an easing of the uncertainly his volatility lent our lives.  And perhaps this will come.  For now, though, his absence is a loss impossible to imagine healing with time.

I still reach for his evening medications when I glance at the clock at 7:45, and feel the stab of emptiness as I pass his room on my way to bed.  The constant struggle of those last grueling months isn’t so vivid right now; instead, I recall the tenderness of his hand against my face as we read the same books, night after night, as the day wound down.

I long now to recapture something as it slips away and changes shape again.  That normal family around the dinner table could be mine, I tell myself, if I just had another chance.  I’d do it right this time.  Yet I recognize that I’m holding onto to an ideal that is merely that, a fantasy painfully relinquished as I did what was necessary to keep my family whole, however unconventionally that evolved.  The home front I forged as mother is not the one I intended, but it is ours and ours alone.

Today I remember the conversations my daughter and I shared over another round of “Chicken with Bread Crumbs” or “Pasta Salad with Italian Dressing,” watching her grow from hesitant girl to confident young woman in the process.

Or my joy at the sound of my son’s voice last fall, clear and decisive, asking for a second helping of one of my dinnertime masterpieces.

“Pancake!” he cried cheerfully.  “Pancake!”

Pancakes it is.

by Kristen -

A Good Bad Hair Day

dan and me

I’d really like to stop caring about my hair.  It’s been the bane of my existence for years, rarely turning out the way I want it to except when I have nothing more exciting planned than a trip to the hardware store.

But while I do spend a tedious portion of each day with my blow dryer, I’m no longer bothered if the results aren’t perfect.  With age comes wisdom: my hair really won’t change my life, or even a moment of my day.

I wish I could adopt a similar attitude about my son’s hair.  Despite of an array of more serious concerns — aggression, bolting, beverage stealing — I still care about appearances.  His appearance, anyway.

Daniel’s disability overruled the reticence regarding children instilled in me for years by my mother.  In her view, displaying pride in her children was a recipe for losing face, an invitation to all manner of embarrassing failure she’d rather avoid until she “saw how we turned out.”  Not once do I recall her praising me to another person.

But autism granted me permission to claim one small advantage in my own child’s favor when the odds were otherwise stacked against him: He is physically attractive.

Were she still alive, my mother would be aghast.  But I say it unabashed: My son is beautiful.  He has that going for him.

His teachers adored him, cuddled him, and melted at his smile.  They loved his hip, laid-back style in the trendy clothes I chose for him.  Friends and strangers alike commented on his looks, perhaps able to summon nothing more substantive to say about a child whose eccentric behavior left them bewildered and tongue-tied.

I didn’t mind that their praise was superficial.  If Daniel’s looks gave him even the slightest edge as he faced the world, I welcomed that edge.  Playing up his physical appearance was one job I could manage successfully as the rest of our world spiraled out of control.

Letting go of that job six years ago was a loss I still experience.  We’d come to accept that residential placement would someday be necessary, but didn’t expect his escalating behavior to force that outcome when he was still a teenager, when he was still, in my heart, my little boy.

I didn’t know then how achingly I would miss the tangible care of my son, the proximity to tend to details he’d otherwise neglect, the tender, intimate routines on which we’d built our relationship together.

I miss supervising his shower, scrubbing his back as water splashed my face and clothing, reminding him to keep rinsing until his hair was clean.  I miss bundling him in a towel in the steamy bathroom, fussing over his complexion and combing his hair, trimming his nails as he sat fidgeting on the edge of his bed.

I miss washing his favorite pajamas every day so he’d never have to sleep without them, checking that his jeans weren’t too short and his dark T-shirts didn’t fade in the dryer.

I miss his shy, satisfied smile as he’d inspect his reflection in the salon mirror, brushing his fingers across his freshly trimmed hair.

I miss being close at hand, ensuring that my son is not dismissed by a world that sees only autism’s messy side-effects, making sure that he is treasured, and honored, and cared for.

And he is cared for.  Well cared for, if not to the standards I once maintained so diligently.  His adult family home is staffed by professionals who do their jobs well, taking care of my son as they are hired to do.  They seem genuinely fond of Daniel, too. Despite his quirks and alarming behavior, he still charms nearly everyone he knows.

There was just the little problem of his hair.

Months after moving to his new group home Daniel’s hair still had not been trimmed.  We offered to find a barber ourselves, but were assured by his home director that he’d take care of it.  With so many other concerns vying for attention, it was easy to let a haircut slide.

Luckily for him, Daniel has his father’s hair, a glossy, medium brown, that on a typical 22-year-old would look fashionable curling so long around his neck and across his forehead, à la Josh Groban.

But Daniel isn’t typical.  Instead of a studiously careless, tousled look, his hair was just tousled.  Disheveled.  A mess, really, even as staff tried their best to keep it at bay.

I don’t know why something so trivial came to bother me as it did.  We’ve had plenty of more pressing challenges to contend with since his transition from residential school to adult family home.

But maybe that is the answer, right there.  He is growing up, every day growing further from my care, from holding him close, tending to his needs on a regular, comforting basis.  We’ve been traveling to adulthood for years, but I’m not ready yet to let him go.

Daniel’s hair had finally been cut the last time I visited him.  It is a singularly awful haircut, his worst since my own attempts when he was three years old.

But that didn’t matter.

His caregiver couldn’t wait for me to see his new hairstyle, smiling as I cupped his face and stroked his forehead, visible again at last.

She was thrilled when I commented on his sparkling white henley, a welcome change from the worn-out, orange mesh garment that, for reasons known only to Daniel, he’s insisted for months on wearing whenever he knows I’m coming.

Eagerly she described how she’d coaxed him into wearing the new Nikes I’d bought him weeks ago, which he’d thus far refused to even try on.

She was beaming with pride at how handsome my son looked for his mother.

His haircut didn’t make a difference, after all.

But the woman caring for him did.

by Kristen -

My Own Exclusive Crisis

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Photo:  Robert Stirrett

I’m sort of a sucker for Dr. Phil.  His column in a recent issue of O: the Oprah Magazine was, I’m certain, written just for me:

“One of the greatest limitations we face as human beings is that we look at the world from our own subjective perspective–especially in situations that directly involve us. Anytime there’s something personal at stake, you’ve got a built-in bias, right?”

Right.

When the initial shock of my son’s diagnosis began to ebb, and the profound ramifications of his autism sank in, I became what you might call “a person with a built-in bias.”

That is to say, “Nobody had it as bad as me.”

Yes.  I realize how self-centered, arrogant, and small-minded that sounds.  I was all those things and worse.  I couldn’t see beyond my own anguish and pain to recognize that far greater pain existed anywhere else I might care to look: my own neighborhood, our country, the universe.

But I didn’t look.  For a while I simply couldn’t.  My son’s life was more important to me than the vast suffering of the world or the political tenor of our country or my neighbor’s mother having breast cancer.  Other parents’ problems with their kids paled in comparison to what I was going through with my son.

The whole world became my own, exclusive crisis, and I was stuck there, grieving and angry with my feet dug in.  Woe to the fool who dared breach my hell, bearing his own inconsequential concerns.

One morning when Daniel was three I tried attending a meeting of the women’s Bible study I’d been part of for several years.  It was held at the church where I’d been baptized and had attended my whole life.  Our group met in the church nursery so our children could play while we conversed and discussed whatever literature we’d decided to read.  I used to look forward to those meetings every other week, and enjoyed the fellowship of the women, many of whom I’d known for years.

It became more difficult to attend as Daniel got older.  He was detached, disinterested in the other children, and prone to abrupt changes of mood.  Monitoring his behavior left me distracted and, no doubt, distracting to the rest of the group.  Just being with these women with their “normal” lives became stressful, threatening, as I watched their children develop typically as my own child fell deeper into his mysterious, impenetrable world.  Where I once felt wholly part of something I now felt isolated, anxious and alone.

Hurrying to escape that morning as Daniel’s behavior escalated, I encountered a man at the church’s front door.  Holding it open for me, he acknowledged Daniel’s inarticulate sounds of frustration with a nod of his head.

“You should try it with twins,” the man advised.  “That’s what my daughter has to do!”  He nodded again, smiled broadly, and gave me a little wink.

“Well,” I began, determined to set this guy straight, “my son has a disorder that makes it pretty — ”

He didn’t even hear me.  “Just try it with twins!  Give that a try!  My daughter really has her hands full!”

Outraged and speechless, I scooped Daniel up and rushed to my car, shaking all the way home, incensed by the ignorant, self-consumed ass who didn’t recognize a real parenting challenge when it stood whining at his feet.

If only I’d had Dr. Phil’s advice back then:  “If you can develop the ability to really see through another person’s eyes, you’ll be tapping into an incredibly powerful tool to managing your life.”

If only I’d been capable then of heeding that advice.

Years later I still think of that encounter, and imagine our conversation if I’d been able to leave the cocoon of my frightened self-righteousness for just one moment, and ask him about his grandchildren.  I could have indulged his pride, cooed over baby pictures, and taken a back seat to his obvious delight.  Or perhaps I’d have learned that he was in fact worried sick, afraid that managing twins was overwhelming his daughter just as mothering Daniel was overwhelming me.  We could have had a dialogue, a meaningful if brief exchange that left us both a little stronger, a little more connected, a little less alone in our experience.

I do that easily these days.  I enjoy such random encounters tremendously.  Thank God I’ve gotten over myself enough to do so.

I try to forgive the woman I used to be, for how I felt and acted back then, when I believed the world had come to an end. Daniel’s autism was not the end of the world.  It was not even close to that.

It just felt that way for a while.