Ready, or not

Dan with stuffed animals 3

Every few months for the past ten years, Evie from Amvets calls to ask for a donation.  She is 97 years old, and has been soliciting for the veterans for over 30 years.  I never turn her down, even if I have to raid my husband’s closet to fill a bag.

Our interactions have grown through the years from confirmation of address and pickup time to lingering, affectionate chats.  I’ve learned, for instance, that she has five children and 12 grandchildren, one of whom graduated from University of Chicago last spring.  I don’t rush off the phone when Evie calls, no matter what I’m doing, mindful that each comforting connection may be our last.

Her call last Thursday was a welcome reprieve from the fruitless knot of writing I’ve been tangled in for weeks, work on an piece that has failed to come together despite dogged attempts to force its cohesion.  Although my donation bin out in the garage was empty, I told her I’d come up with something.

“Anything is welcome,” she affirmed, as she always does.  “Clothing, books.  Old toys — we can use anything.”

“Well, my children are 26 and 24,” I replied with a chuckle.  “So I don’t have too many toys around the house anymore.”

She continued her gentle coaxing, even though I’d already agreed to a donation. “Children’s books are good.  And stuffed animals are always appreciated.”

I thought of my son’s bedroom upstairs, the built-in shelves lining one wall still filled with plush animals of various species.  A lifelike lion sprawls regally across the twin bed; a five-foot giraffe gazes out the front window, a gift from my mother-in-law the last Christmas before Daniel left home.

Suddenly I was confiding in a woman I’ve never met, but who has been a fixture in my life for a decade.

“You know, Evie, my son has autism, and hasn’t lived with me for over eight years.  But his room is the same as it used to be.  It’s filled with stuffed animals I can’t bring myself to give away.”

In a rush, I continued, explaining that I’m a blogger, and had been trying when she called to write about grief, pain I can’t relinquish, nor find words adequate to explain.

“I don’t know what’s the matter with me, Evie,” I went on tearfully.  “He’s gone and I know he’s not coming home.  He’s never coming home but I’m still waiting.  I’m still waiting for it to be different.”  My voice broke.  “I can’t let go of him.  I can’t let go of the grief.”

Evie replied without hesitation.  “Of course you can’t,” she declared.  “You carried him.  He’s a part of you.  He’ll always be a part of you.”

She told me then of the baby she’d lost in pregnancy, when in her ninth month she contracted measles.  “I recovered but the baby couldn’t fight it,” she explained, her quavering voice steeped in remembered regret.  “I never got over that, either, not completely.  You never do.”

We talked for some time, about loss, what it takes and what it leaves behind.  “You are stronger for what you’ve gone through,” she observed, the experience of nearly a century lending new credence to the words.  “But you don’t ever let go of what you feel for your child.  He is always a part of you.”

In the weeks following Daniel’s move to a therapeutic residential school, I spent many nights curled in his bed, lost to grief, laden with treacherous, guilty relief that I could now relinquish the rigors of his care.  I knew I couldn’t do it anymore; none of us could. That didn’t ease the burden of failure, though, the awful acknowledgement that my best efforts weren’t enough.

Surrounded by the mementos of his life with me, I let the sorrow flow.  My eyes fell on photos of his special ed peers, his middle school diploma, a worn communication notebook from the fourth grade.  I held the photo of a dolphin leaping from the water at the Shedd Aquarium, a clipping from the Tribune he’d often pull from his nightstand and ask, hopefully, “Fish?”

His animal collection, amassed over 15 years, peered down at me.  The swivel-headed owl; the wolf, its head thrown back in a howl Daniel had learned to imitate; the spotted pony, a token of our joy at his first coherent word as a toddler, “Horse!”

How can I let go of these companions, tossed countless nights across his bed, before we turned off the light for sleep, Daniel calling each one by name?  “Bear!”  “Sheep!”  “Frog!”  Again and again I’d lob the soft toys until he was surrounded, giggling and gleeful and snug in their comfort; a treasured ritual of our uncommon life, a period of laughter and happiness, soothing whatever trials the day, now gone, had rendered.

It’s long been my plan to refit Daniel’s bedroom into an office, keeping his bed in place, while filling the shelves now housing his animals with the dozens of books stacked in piles on my own bedroom floor.  It would be a fitting space for me to write, to wrestle the ongoing themes that have shaped my life, to draw meaning from circumstances I still struggle to understand.

I can’t bring myself to do it, though, to symbolically sever a tie that has been loosening on its own, bit by bit, for years, to grant permanence to a truth I’ve tried to deny for half my lifetime.

If I’m honest, Daniel himself probably wouldn’t object, or even register the change to his old bedroom.  He once raced through the house on his visits home, darting into each room as though confirming the accuracy of his memories.  On his last visit, though, I had to coax him upstairs, where he studied the souvenirs of his childhood with mild interest, humoring me, it appeared, more than savoring a time now past.  He seems to recognize this as home, but a home he doesn’t live in any more.  And that’s okay with him.  He’s moving on, just as he should, as he must.

I think of Evie, holding the loss of her child over the span of 70 years.  I told her I’d try to choose an animal or two to donate this time, and she told me not to worry; I would do it when I was ready, if I am ever ready at all.

I don’t know when this will be so.  Part of me still clutches the slender reed of hope, that Daniel’s life will turn around, that autism hasn’t slammed the door completely; that our bright dreams of growth and improvement when he entered residential care will yet be realized, even after all these years.  I’m still waiting for another chance.  I still want him back with me again.

This is unlikely, irrational.  Futile, even.  I know this; I do.

Yet hope is relentless.  Perhaps that’s how it must be, too.

The Guardian of Positive Thinking

Image 1 - Version 2

A few months ago I received notice to file the “Annual Report on the Condition of the Ward,” a document required of legal guardians, roles Daniel’s father and I have served since our son became a legal adult.

The court doesn’t grant guardianship lightly, even in cases as clear-cut as Daniel’s.  Although he’d been living in Wisconsin for over two years when he turned 18, Daniel was required to appear in person at the courthouse in Illinois, twice: first, so the guardianship petition could be physically served to him, and again several months later, at the hearing itself.  We had to demonstrate both that Daniel needed our legal oversight, and that we were qualified to provide it.

Getting him to the courthouse was a logistical nightmare all its own, and by the time our case was called, we were tense and anxious and testy.  My husband hovered nearby as Daniel’s father and I escorted our son forward, ready to intercede should he suddenly bolt or become otherwise agitated.  We needn’t have worried.  Daniel stood complacently in front of the judge’s bench, oblivious to the gravity of the proceedings on his behalf, tapping repeatedly on a sticker book with his index finger, muttering his multi-purpose phrase, “Ahh doh doh doh doh doh doh doh dooooooh…”

We’d been prepped for questions the judge may pose: Did Daniel understand the nature of the petition?  Did he agree with its terms?  What plans did we have for his future, what long term arrangements had we considered or put in place?  And, as divorced parents, could we make decisions together, work in tandem for Daniel’s sake?

The judge asked none of these questions, though.  The evidence of her own eyes was the only proof necessary of Daniel’s need for a lifetime of stewardship.  An expression of muted compassion on her face, she simply signed our petition, and wished us good luck.

I try to craft a fresh-sounding response to the questions on the report each year, regarding Daniel’s living situation, health and welfare.  It feels like a test I never quite ace, my answers distressingly similar despite the passage of years.  I note our weekly visits, and the activities that occupy his days: community outings, accompanied by aides, restaurant visits, shopping trips, walks on the beach when weather permits.  Not a thrilling chronicle, but more than I once could truthfully recount.  His life is not what I want it to be, but it’s a fuller life than he’s had in years.

Noting that the report wasn’t due for several months, I set it aside, escaping to the pages of the crime novel I’d begun the day before.

The plot centered on a 19-year-old man, soon to be released after seven years of incarceration as a juvenile offender.  His newly appointed probation officer reflected that the young man would have been acclimated to re-entry into society with day outings in recent months: “The boy would have had excursions accompanied by one of his case managers.  Shopping trips, a meal at McDonald’s, a walk in the park.”

Shopping trips.

McDonald’s.

A walk in the park.

I had my annual recap of Daniel’s activities right there.  I need only copy, word for word, the description of a prisoner’s meager, supervised outings to capture the essence of my son’s life experience.

I shared this bleak observation with my husband later that evening, my remorse at failing to write a better story for Daniel’s life, that his experience hasn’t changed significantly in the years since we stood before the court to petition for guardianship.

“What kind of a guardian am I that Daniel’s life mirrors that of a prisoner?” I asked mournfully.

Andy listened patiently to my rambling, then asked a question of his own.  “Remember the closet?”

I remembered.

It was the room fashioned by Daniel’s teaching team in those last, desperate weeks before he left home for residential school, a one-windowed storage area off the special ed classroom of the high school where he was enrolled as a sophomore.  As his mood and behavior deteriorated, day by day, he spent more time in that closet than not, cocooned in his own, secure hideaway, sleeping, humming, fiddling idly with the same few books or puzzles for most of the school day.

And staff allowed it, because they were out of ideas by then, when all the painstaking structure and therapy, the routines and behavior plans and social stories had broken down, Daniel’s behavior so volatile that his team couldn’t walk him through the halls to the lunchroom, for fear he’d lash out, for fear he’d hurt someone.

“Remember the call I got,” Andy continued, “while you were at work?”

I remembered that, too.

They’d asked him to come immediately, to pick Daniel up as soon as he could.  Don’t bother parking, they told him, just pull directly across the practice field behind the school, as close to the exit near Daniel’s classroom as possible.

He recalled the bite marks, red and angry and swollen, across the teacher’s arm when she brought Daniel to the car, stark testimony to autism’s vicious hold on our son, the power it wielded, beyond our understanding or control.  He recalled the grief in the teacher’s eyes, the resignation of one who had fought so vigorously, and had nothing left to fight with.

Yes, I remembered.  I remember it all.

“I know he’s not where you want him to be,” Andy told me gently.  “But Daniel’s not in prison.  That closet was a prison.  They didn’t intend it to be, but that’s what it became.”  He took my hand.  “But he’s not there anymore.”

I don’t know how to let go of all that remains unmet in my son’s experience, to merely shrug and concede, “It is what it is.”  It will never be so simple.  Acceptance is an ongoing narrative, rehashed and revised and picked at, again and again through the passages of Daniel’s life.  I doubt I’ll ever stop questioning what I could have done differently, if it would have made any difference at all.  No one would accuse me of being a glass-half-full kind of person where my son is concerned.  Autism stole Daniel’s life before he ever had a chance, and I grieve that every day.

Yet I am grateful, too, more grateful than these pages reflect, for what my son has now, for his faltering progress since I completed my last guardian report a year ago.

Shopping trips.  McDonald’s.  A walk in the park.

Simple pursuits that just a few years ago we ached for Daniel to enjoy again, pursuits I can no longer provide for him alone.  I am his legal guardian, but no longer the right one to care for him.  How this haunts me sometimes, when I want him back so desperately, to savor his presence on a daily, reassuring basis.  I don’t remember the anxiety in those moments, the chronic worry, the certainty that catastrophe was imminent, a crisis that would prove irrevocable.

Yet I’m witness to Daniel’s adjustment to the life he has, the opportunities at hand.  I don’t know if these are enough for him.  But whether or not they are enough for me is irrelevant.  My role is to ensure that possibility exists for him, that doors open, that the self-indulgence of despair doesn’t cripple me.  It means embracing the progress we’ve discerned, however fragile, reaching past the loss, and daring to hope for more.

This kind of thinking doesn’t come easily for me, my thoughts so often colored by what could have been.  What life would I describe for my son were this disorder not a part of it?  I long to write that story, but that isn’t the story to be told.  The one we are writing now needs my passion, my energy, my faith.

I remember that, too.

Year after year, after year.

 

Excerpt from “Those We Left Behind” by Stuart Neville.

Denny’s: A Love Story

Denny's

Several years ago, the former pastor of the church I worked for sent me an email a few days before Christmas, and we exchanged brief updates on our lives and plans for the holidays.

Chris and his family were going skiing in Michigan the week before New Year’s; I reported that Daniel would be home for the day on Christmas Eve, and we had our own big plans: dining at Denny’s, his favorite restaurant.

Apparently our upcoming yuletide celebration sparked an idea for the Christmas Eve sermon Chris was pondering for the new church he’d founded in Chicago. He hoped to illustrate the Magi’s likely bewilderment upon finding the humble manger, when they had anticipated grander surroundings befitting an infant king. He wondered if my feelings about going to Denny’s for Christmas perhaps echoed those muted expectations.

As it happened, I’d just learned that a letter I’d sent to the Chicago Tribune would be published on the 26th, and I sent Chris a copy of the text. In it, I described my adjustment to simpler holiday traditions, the gradual lessening of expectations as autism changed our lives.

Chris’s sermon was well-received, he told me later, my story of Christmas at Denny’s the hook he’d been seeking to hold his message together.

For years when he lived with us, visits to Denny’s were a high point for my son. We loved it too, as the franchise near our home was never too crowded to find a booth in which to ensconce Daniel while he waited, impatiently, for the meal he always ordered.

I remember in particular a Saturday evening shortly after Daniel’s twelfth birthday. His sister Natalie had her own life by then, rarely stuck with her parents on a weekend except under the most dismal of social circumstances. So it was just the three of us, Daniel anchored between Andy and me in a spacious, semi-circular booth, his eyes glued to the swing door that led to the kitchen across the dining room. Despite his elation at being there, he remained watchful: the food had not yet arrived.

A paper kid’s placemat lay in front him, on which he sporadically scribbled, when prompted, with the worn crayons provided by management to keep children occupied until their meals were served.

There was no distracting Daniel, though. Repeated assurances that his food would come soon didn’t cut it. I sensed him trying to relax, to trust us and his own previous experience, that his coveted “Sampler Platter” with a side of fries was forthcoming. Yet every minute or so he’d ask again for his food, tapping the laminated menu for emphasis.

“Frah? Cheh? Chica?”

And at last the Sampler Platter appeared, a heaping, monochromatic mound of fried mozzarella sticks, chicken fingers and onion rings, augmented by a plate of French fries. As it emerged from the kitchen he sat straight in his seat, his gaze riveted on the server’s progress toward our table, reaching for a fry before she had set the plate in front of him.

In moments his mood changed as he let his guard down at last. Only then could he truly enjoy the experience, smiling and chuckling while plowing through each delicious, deep-fried morsel, gulping his soda between bites.

That night seems like a lifetime ago, when hope still glimmered for at least a semblance of the normal life we dreamed of for our son. We’d recently begun tentative exploration of the scant, unappealing choices offered by our state for adults with disabilities, advised by transition specialists that it was never too early to begin preparing for this possibility.

But in 2004 nothing yet had been etched in stone; we were several years from the bleak December day we moved Daniel to residential care. He was still young, adaptable, impressionable. Dramatic, life-altering change was still possible, with maturity, continued therapy, the eleventh-hour intercession of God. It was possible.

Wasn’t it?

I still see him that night, his anxious face reflecting concern carried, unspoken, for a lifetime; that his simple request, finally discerned among so many unarticulated, misunderstood desires, would yet be denied him.

And once the food came, his worry allayed, he relished his modest treat, a meal of his choosing, oblivious to the world beyond the walls of the restaurant: the world of sports and video games, of roughhousing with peers or movies with fledgling boys whose voices were changing, a world of first, tentative contact with girls, a world of moving forward.

Is this what life holds for my son, I thought, the bright spot of his days eating at Denny’s with his parents on a Saturday night? This isn’t forever; it simply can’t be. This can’t be what God has in mind for my son, my beautiful, bright child. There must be more for him one day…

I didn’t realize that one day even Denny’s would be out of reach, that the disorder that limited his focus to a platter of fried food would render even that pleasure unattainable.

It’s been a year and a half since we took Daniel into a restaurant, even a fast food venue. Past incidents of upset and aggression haunt me. I don’t care if he hurts me; I’ve survived that before. I fear him hurting another, an unsuspecting stranger, standing in the way of the obsessions that seem to drive him now where food and beverage are concerned.

The team at his group home have taken him into eateries for over a year, McDonalds, Panera, Olive Garden. We’ve joined them there, amazed and encouraged by Daniel’s demonstration of acceptable behavior when monitored by professional caregivers. His case manager hasn’t encouraged us to try this ourselves, however, cautioning that Daniel must learn new patterns, breaking rituals and expectations formed over years of parent-child interaction.

Yet increasingly these last few months, I knew we needed to try. Andy and I chose mid-morning last Friday to give it a go.

We stopped at a Denny’s a few miles from Daniel’s group home before picking him up, finding it more crowded than the one back home. A few booths were unoccupied, however, and I asked the manager to hold one for 20 minutes until we returned with our autistic son. He didn’t seem particularly enthusiastic, but a booth remained vacant when we returned. Flanking him on either side, Andy’s finger hooked in Daniel’s belt loop, we walked quickly through the parking lot and into the waiting booth.

We must have looked odd, hustling our 6’1’’ son through the restaurant. Andy suggested I relax just a bit, that we needn’t behave like prison wardens escorting a convict to his cell. My heart pounded, though, the tension I intended to conceal thrumming off me in waves, the limitless calamities Denny’s held in store streaming like ticker tape through my mind.

Our booth ran parallel to the galley where orders were dispensed and the soda fountains were housed. Daniel craned his neck to get a better view, and I flashed on the image of him leaping over the partition, a maneuver of which he is entirely capable.

“I can’t believe it’s come to this,” I remarked mournfully, once we’d settled, a sticker book replacing the kid’s placemat on the table now. Andy remained calm, though, despite my anxiety, despite Daniel’s repeated demands for pop and restless gestures toward the kitchen. He covered my hand reassuringly. “Relax, hon. We’re doing fine.”

And then the beloved Sampler Platter arrived, complete with a side of fries. And Daniel relaxed, just as he used to do, wolfing down his food in customary fashion before we could change our minds. By the end of the meal he was beaming, giggling, encouraging our tickles, just as he did as a boy.

It was a tense outing. But it was a beginning, a return to a pleasure once enjoyed.

My son’s life now bears little resemblance to the life once hoped for, yet I recognize that those hopes, those expectations, were my own. I wish more than anything that I knew what Daniel hopes for, what dreams he holds dear, what experience he longs for.

Yet he remembers Denny’s. It holds meaning for reasons I may never fully understand. But he still loves it there.

Would he have been just as happy with his caregiver by his side? Maybe.

I think he remembers, though, that this experience, this treat, is part of our life, together.

Bond in My Pocket

Daniel Craig as Bond

I have rather a thing for the actor Daniel Craig, specifically as he portrays James Bond, and I’d venture to guess I’m not alone.

What woman can deny the appeal of a man so intriguing, so in control, so incredibly capable of handling whatever bad thing may barrel her way, like a unpinned grenade?  Throw in the vulnerability Daniel Craig brings to the world’s coolest spy?  You’ve got the ultimate package, right there.

I suppose such impervious women exist, but I’m not one of them, and I’ve not hidden the fact since I first saw the new 007 brandishing his Walther P99 in Casino Royale.  (Yes, it’s true: I Googled that.)

My husband Andy doesn’t mind my infatuation, as it tends to surface only in the weeks preceding the release of a new Bond film. I imagine he has his own celebrity crushes as well, but has the sense I lack to keep such thoughts to himself, Lara Croft: Tomb Raider notwithstanding.

I would have preferred, however, for him not to learn, a few years back, the extent of my obsession in quite the way he did.

Having wasted the better part of an hour trolling the internet for photos of the actor, I figured, why not print off a few for future perusal?  These choice exemplars I then hid in the pocket of an old down coat I wear when feeding our porch cats or digging around in the garage.

This act of foolishness coincided with the purchase of my first iPhone, and Andy’s admonishments to look after the pricey device. Duly warned, I embarked on my weekly visit to Daniel the next day, stopping first at Whole Foods for a bagel for the road.

Daniel was in a fine mood, and I dug in my purse for my new camera-equipped phone.  It wasn’t there.  Upending my bag’s contents on the floor proved fruitless, as did a frantic search of my car.  Well done, Kristen.  This would never have happened to Moneypenny.

Using the phone at Daniel’s group home, I called my daughter, instructing her to drop everything and contact Whole Foods to see if they’d found the phone there.  Having done all I could do for the moment, I returned to Illinois, phoneless, photoless, feckless.

Meanwhile, Andy returned from work to find Natalie’s scrawled note on the kitchen counter: “Whole Foods — Mom’s phone??” Dismayed, he launched a preemptive house-wide search, through sofa cushions, kitchen cabinets, drawers, seldom-used purses on the back of my closet door.  And the pockets of every coat I own.

Including my old down jacket.

I can’t remember where the phone eventually turned up, a detail eclipsed by my humiliation at the discovery of my secret Bond stash by the grinning, thoroughly amused man to whom I’ve been married for 16 years today.

It wasn’t easy for Andy to make a commitment to marriage after 42 years of bachelorhood.  It took years for me to fully understand his fears, his doubt at his ability to successfully assume the responsibilities inherent in legally binding himself to another person, and her two children, as well.

His devotion was never in question, as he demonstrated his love for all three of us in ways both tangible and implied.  I didn’t understand his concerns as I should have; I saw only the man I knew him to be: one of insight and integrity, of quiet humility and strength.

His wariness was painful, though, as he faltered toward the covenant I valued, as a woman and the mother of young children. My ego was bruised; I wanted to be a catch he was eager to snag, not an appendage reluctantly assumed at the altar.  I wanted to be Helen of Troy.

Marriage after 40, I learned, is challenging.  We both had expectations, dreams already lost and mourned.  But we’ve made it so far.

And I’ve come to realize that his reluctance proved more meaningful than heedless enthusiasm ever could have done.  He was afraid to get married, but did it anyway.  He made one of the most difficult decisions of his life, for me.

Not the fairy tale l’d concocted, certainly.  Yet those have a way of tarnishing over time.  And while the years since our eventual union have offered more challenges than even he dreaded, he remains.

Not Daniel Craig, perhaps.  But, Andy, you’re my James Bond in all the ways that matter.

You didn’t bail when a financial planner told us years ago to expect to pay privately for Daniel’s longterm care, that 80 grand a year for the rest of his life was a conservative guess.

You painted Natalie’s bedroom three times in the house you didn’t want to buy in the first place to achieve the perfect shade of yellow, even though no one could tell the difference but me.

You laid across my hospital bed after my unexpected surgery, cradling me while I cried out in pain.  You recognized the bond I shared with my father, although you met him just briefly before he died.  You held my grief as my mother was lost, inch by inch, to Alzheimer’s; you were the one to wake me gently in the night, to tell me my brother had called, and our mother was gone.

You schlepped to music recitals and theater performances, to therapy sessions and IEPs, from elementary to high school, to schools miles away from home.  You’ve dragged boxes and dressers and mattresses into dorm rooms and first apartments; you’ve soothed disappointments and set backs, the first tender ache of a broken heart.

Your arrival home in the evenings brought Daniel running from his bubbles and videos, laughing and joyous, to greet you.  You taught him to wipe his face with a napkin, and knotted his tie before eighth grade graduation.

It was you who patiently coaxed him through the door of his school in Wisconsin on that fraught, fretful day eight years ago, so he’d be entering his new home on his own terms.

You taught Natalie to drive when I was too freaked to do so; you sat up in those late hours when I was spent for the day, guiding her through the torments of adolescence; you shouldered the cost of graduate school so she wouldn’t be saddled with debt as she entered adulthood.

You held fast during that ghastly meeting with the psycho attorney, when the stakes were so dreadfully high, and endured my screaming in rage and bitterness and fear all the way home from Milwaukee.

You consoled me after a friend I adored turned on me, crushing my spirit and confidence, rueful that you hadn’t been there to protect me from her scorn.

Strapped to a stretcher in the back of an ambulance after our car crash in Wisconsin, you implored paramedics to look after your wife and stepson, because in his agitation, our son might hurt me.

You’ve submitted to innumerable, spontaneous readings of prose I happen to find fascinating, usually during a crucial movie sequence; you’ve helped clarify my thoughts when I couldn’t understand them myself, much less express them coherently in words.

You’ve never once in 19 years said a negative word about my first husband, and have built a solid, generous relationship with him, and his wife; you attended the baptism of their twins, spending most of the ceremony in the parking lot with an uncooperative Daniel, because you understood that Dan should be there, as part of the family.

You told me that as stepfather, you will always defer to my parental authority, but have borne every thorny problem of parenthood by my side.

You assumed a responsibility you never thought you wanted, and have lived up to it every day.  You became a man you didn’t intend to become, and are man enough to admit that you are grateful for having done so.  And as my partner, you’ve made me more than I was before.

For years, when I’ve been scared, you’ve told me, “Relax, sweetheart.  You’re golden.  You’re in God’s pocket.”

I have my doubts about that sometimes.  But no matter.

I’ve got you in mine.  I’ve got you.

ka25

Pizza, interrupted

eye-watching-you-707028

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.