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 -

Who’ll Stop the Rain

Rain

In my experience, few endeavors have less effect than telling a worrier not to worry, as the years I’ve lost to fruitless anxiety demonstrate.  Apparently, I needn’t worry that I’m alone, however, as Googling the word produces 391,000,000 hits.  We are a world of worriers.

Yet as my friend, the writer Robert Hughes, points out, “I think everybody can say with Montaigne, ‘My life has been full of terrible misfortunes most of which never happened.’”

Concurring with this assessment, though, seldom prevents me from clouding days with one worry or another, my list of what ifs and potential calamities far-reaching and often irrational.  It’s become such a part of me I hardly consider trying to change.

A recent bout with my most familiar nemesis led me to consider, though: could I at least try to embrace a less fatalistic approach, to consider the wisdom of annoying but accurate platitudes like, “Worry is like walking around with an umbrella waiting for it to rain”?

Such an apt simile, after all.  Rain, and the damage it may cause, is one of my most visceral fears.  It’s unstoppable, beyond human control, potentially ruinous.  The menacing possibilities my imagination can conjure are boundless where rain is concerned.  As a co-worker unwittingly reinforced, “Water always finds a way in!”

My phobia reached its peak in the spring of 2014, following a grueling winter of near-record cold and snowfall, the back of which every Chicagoan longed to see.  Everyone except me, that is.  The promise of spring promised me only the melting of the massive snowbanks directly into the basement of my charming but porous 90-year-old home.  I worried about the watery consequences incessantly, for weeks on end.

Given how infrequently we’ve had more than a few trickles in the 14 years we’ve lived here, even I recognized this obsession as absurd.  I couldn’t stop myself, though.  The leaky episodes we had experienced kept me watchful, wary, filled with dread whenever rain was foretold.

That spring was lost to me, my anxiety gathering like the whopping, snow-melting storm forecasters gleefully predicted for a Thursday in early April.  I’d prepared as best I could: old towels lined trouble spots, rags and buckets were near to hand.  Home from work after the day-long deluge, I braced myself at the top of the basement stairs, Odysseus facing a hostile, enemy-strewn shore.

“Be strong, saith my heart;” I recited bravely, “I am a soldier; I have seen worse sights than this.”

*****

We all have fears, real and imagined, some of which we allow to cripple us. My friend Marla Davishoff, a talented therapist, assures me I’m not alone in this particular fear; many people, women especially, feel anxiety around water and their homes. Perhaps it involves the instinct to protect our nests, our flocks.  I can scarcely recall my temperament before adulthood brought responsibility beyond my own narrow concerns, beyond caring for myself alone.  Have I really been this nervous my whole life, this irrational about problems that, while tiresome, are most certainly not the end of the world?  Whatever damage our house may sustain, we have the resources to fix it, however inconvenient that may be.  Yet when the familiar panic creeps in, I chide myself in vain: “What’s the worst that can happen?”  Plenty, my anxious mind replies.

Such frivolous worry, of course, is also just a tad self-centric, cowardly, even.  How selfish to waste so much energy on foolish fears as society reels with more sobering concerns, while I, in fact, have more serious concerns myself.  Real, life-altering concerns.

For years I thought controlling at least my physical environment would help quell the chaos of autism, the daily upset and fear, the desperate need to help my son without knowing how.  I’ve justified, too, my phobias as necessary stand-ins for the vast intangibles that have shrouded our lives since Daniel’s diagnosis, staving off a flood of legitimate, long-term worry too serious and heartbreaking to absorb.  Worry needs an outlet somewhere; how much easier to shoot rabidly at identifiable targets than the elusive, mercurial enemy that has shaped my son’s life, and my own?

For me, and many parents like me, diagnosis of profound disability in our children skews our image of a rational, predictable world.  Life “working out for the best” becomes a naive, unjustified banality, rhetoric like “What’s the worst that can happen?” scant reassurance when your child’s future, his whole existence, is at stake.

I know powerlessness now, that circumstances exist beyond my control despite pleas and prayers and promises; that love alone is not healer enough; that some losses will never be redeemed.  Autism stole Daniel’s life the day he was born, the fullness of normal experience he should have had lost to fate, or chance, or an arbitrary bestowing I’ll never comprehend.

He appears content these days.  In many ways he is thriving.  But I know all that he is missing.  I can’t abandon the worry over what his heart holds, the unexpressed dreams he may harbor that will never be fulfilled.  He is blessed with health and energy and curiosity, a family that loves him, yet he faces a lifetime of inequitable challenges through no fault of his own.  This truth is as sure as rain.  It will always find a way in.  Yet I keep trying to stem the tide.

I wonder if I’m on the right track about any of this, if these insights are really just a convoluted excuse for behavior that’s merely habitual, perversely comforting even as it cripples me.  Have the years of doubt and concern, of questions and faltering, imperfect solutions, warped me so indelibly that I no longer know how to live without worry?

I guess I needn’t worry over the why.  The possibility of change, my fledgling yearning for it and the hard work it involves, is concern enough for now.

******

As you may have guessed, our basement didn’t flood two years ago.  A few rogue rivulets escaped my towel barriers, easily wiped away.  I wasted that whole spring for nothing, fretting away moment after moment, hour after hour, until a whole season had passed, over an event that never occurred.

A few months ago we had the drain tiles in our basement replaced.  It was an expensive undertaking, postponed for years until my daughter was through graduate school and Daniel’s residential placement was, at least for now, secure.  Just after Christmas we added a backup sump pump system, to protect us even during power failures.  Marla optimistically predicts that these improvements will lay my water worries to rest, once and for all.

I was huddled on our screened porch a few weeks ago while the four cats we care for ate the breakfast I provide them each morning.  Andy’s allergies prevent us from bringing them inside, but our porch has been their home base for six years, and we’ve made it their sanctuary.

Sipping my coffee, I reflected that it will be months, perhaps years, before I descend the basement stairs without trepidation at what might be seeping across the floor, but I’ll be working on it, one step at a time.

This hopeful moment was punctuated by a piece of ceiling plaster falling on my head.

The porch roof seems to have developed a weak spot.

My time in the deep end over this new threat passed more quickly than you might imagine, more in proportion to the relative gravity of the problem.  A roofer was called.  A temporary fix was installed, protecting our porch and our cats, until we can address the issue come spring.

I’ve got this.

Not yet a soldier, but standing fast.

This time, at least.

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 -

Truly, deeply

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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 -

Saying Yes

SAY YES

Years ago, while I worked for the church a block from my home, I’d sometimes bring my son along when he had a day off school.  His wonderful sitter was unavailable only on the Jewish High Holidays, so fortunately this didn’t happen very often.

My boss, the church pastor Chris Coon, didn’t mind, or never told me if he did.  A typical kid Daniel’s age could stay home unsupervised, but Chris understood that wasn’t an option for my 13-year-old with autism.  He was fine with Daniel hanging out in the nursery across the hall from my office, examining the trove of books and toys stowed in colorful bins, while I hustled through the most pressing tasks before his patience wore thin.

Walking down the sidewalk to the church one such day, I explained to Daniel that we’d have lunch at Dear Franks as soon as I finished working.  He endorsed this idea by gesturing over his shoulder in the direction of the popular hot dog shop a few blocks away.

“Hot dog?” he verified, and I happily concurred.  “Yes, hot dog!  We’ll get a hot dog soon!”

We’d been settled in for just a few minutes when Daniel crossed the hall from the nursery to confirm the plan.

“Hot dog?” he repeated, planting himself in front of my desk.

“Yes, buddy, we’ll have hot dogs as soon as I’m done.”  Reassured, he returned to the nursery.

A few minutes later he was back, ambivalence creasing his brow.

“Burger?” he asked dubiously.

“Well, sure, you can have a burger,” I replied. “Whatever you want.”  Satisfied, he returned to the nursery once more.

A minute later he was rounding my desk and hovering over my chair.

“Hot dog?” he asked, his eyes boring into mine for emphasis.

“Yes, a hot dog’s fine,” I responded, repressing a sigh.  “You can have whatever you’d like.”  I gave him a piece of candy from the jar on my desk.  “You can have a hot dog or a burger.  Fries, too!”  Mollified, he went back to the nursery where he remained for 90 seconds.

“Burger?”

We volleyed this way for 45 minutes, until Chris came out of his adjoining office and stood behind my computer monitor.  We must have been driving him crazy.

“I don’t know how you do it,” he observed honestly.  “You’re incredibly patient.”

Ruefully, I explained that these exchanges were so commonplace that they seemed entirely normal by now.  Sending off one last email, I called it a day, and Daniel and I walked back down the sidewalk toward the hot dog stand.

Halfway there he stopped in his tracks and seized my arm.

“Chicken?”

*****

Ten years later Daniel and I sat at the kitchen table in his group home, eating the fajitas I’d picked up at Chipotle.  As usual, he polished off his diet Coke in no time, and pointed to my cup.

“No, Dan, this one’s mine,” I told him.  “You drank yours already, remember?”

My repeated assurances that he’d have another drink at eight o’clock, his scheduled soda time, did little to assuage his desire for mine, as I finished my own meal and stuffed the remains in the bag.

“Pop?” he asked every 30 seconds or so.

Every 30 seconds or so I told him no.

Switching tactics, he began pointing to the driveway.  For years I’d stash a soda in a cooler in my car, his treat for the ride during my visits.  He hasn’t forgotten.

I told him no half a dozen times.

After lunch he sat in his bedroom, temporarily distracted by the sticker book I’d brought for him, naming, impatiently, various animals and objects as I pointed to them.

We examined a few puzzles he enjoys on his iPad.  I asked him about a T-shirt he’d selected at the Renaissance Faire.  He showed me the new pair of gym shoes he’d picked out at Sports Authority.

Every minute or so he pointed to the hallway and asked me for “car.”

I told him no again and again.

His agitation mounting, we moved to the patio so Daniel could blow bubbles.  He pointed again toward the driveway.

“Let’s hang out here, Daniel,” I replied brightly.  “Show me your backyard!”

He unscrewed the top of his bubble dispenser and hurled its contents to the grass, clenching his hands in front of his face in rage.

“OK, Dan, no more bubbles today,” his one-on-one aide, Brittany, called from the backdoor.  Daniel turned to me and asked plaintively, “Buh buh?”

Knowing I must support her authority, and the consequence he’d brought on himself, I told him no once more.

*****

For eight years my visits have meant reassurance that I’m still in Daniel’s life, but also the modest treats he craves: sticker books, chocolate covered pretzels, the blasted, coveted soda, his obsession for which shows no signs of stopping.  His case manager advises modeling a new kind of relationship, transcending the tangible offerings I use to demonstrate my affection, and letting go of routines honed over years to find a fresh connection as mother and son.

Changing Daniel’s expectations of me, though, seems almost impossible sometimes.  I simply don’t know how to do it.

We sat in the living room following the outburst in the yard, Daniel resigned, it seemed, to disappointment.

“It’s hard to tell him no all the time,” I remarked dolefully.  His aide nodded in understanding.  Brittany’s affection for my son is obvious even as she enforces the rules his team has established.

“I can’t imagine how it feels for him,” I went on, “to be denied again and again, when he wants so little from me.”  I paused, fighting to control my voice.  “Just once I’d like to tell him yes.”

Brittany murmured consolingly.

“I mean, I get it,” I continued, unsure what I was even trying to express.  “He must be desperate to exert control, when so much in his life is determined for him.”  My voice trailed off uncertainly.  “I know he’s happy until he sees me and starts remembering… I know he’s happy most of the time — ”

From her seat in the kitchen, the other staff member on duty that day suddenly chimed in.

“Some people just need structure,” she pointed out matter-of-factly.

I stared at her, fumbling for an appropriate response.

“Well, duh, lady,” came to mind.  “Why do you think he’s living here with you instead of at home where he belongs?”

How to explain that my despair in that moment had nothing to do with what my son needs, but everything to do with the emotion those needs prevoke?

“You don’t know my son as I do,” I thought defensively, “and you certainly don’t love him as I have since the day he was born.”

These discouraging visits make me question whether I should be heeding my son’s new team at all, continuing to follow their lead as my heart screams otherwise.  At the same time I’m wracked with self-doubt, asking, in my darkest moments, where my love has taken us.  My mother’s heart ultimately failed to provide what he needs to live safely and productively, after all, the structure that makes his experiences now possible.  Who am I to question the professionals who have succeeded in showing him a broader world, a world in which I am a mere visitor?

*****

There is no black and white with autism, nor in our shifting reactions to its far-reaching effects.  It’s not so cut and dried, mired here in ambiguity, the chronic, desperate search for what is best for our children, stumbling our way through the fallout of this hideous, inscrutable disorder.

I’m learning, though.  My role is changing, but I’ll always be his mother, whatever growing pains we are experiencing now. Outside Daniel’s group home we manage fairly well, when I join him and his aide at a restaurant, or wave to him, smiling at his joy, as he swims at the sports complex nearby.

I am part of his new life in these venues, rather than a reminder of the life we used to share.  That’s where he needs me now.

But I’m aiming for the day we can simply walk down a sidewalk again, eager for a hot dog, or a burger, or a chicken sandwich.

The day when I can say yes once more.