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

IMG_1606

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

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

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

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

Huh?

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

I realized I had no answer.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Hope is powerful.  Joy remains.

This, at least, I know is true.

by Kristen -

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.

by Kristen -

Camels in Wisconsin

Kids at Botanic Garden

My close and very wise friend Marla reminds me sometimes that, as parents, we are only ever as happy as our least happy child.

Which is problematic when a) you’re as co-dependent as I am, and b) children are a never-ending source of angst all around.

Oh, they are the wellspring of all that is most beautiful in our lives, as well.  I’m acutely aware of how fortunate I am to be a mother; I can’t imagine who I’d be without my children.  And therein lies the rub.

My equilibrium — because I’m old enough to know that “happiness” isn’t really the goal after all — is irrevocably tied to that of my children’s, as it is for most of the parents I know.

Aside from the advocacy role I’ve assumed on my son’s behalf, I don’t think I’m an overbearing parent; I’ve allowed them room to mature and explore, in different ways, while remaining close and involved in their lives, even as they’ve grown up and away.

My peace of mind, though, is dependent on their lives being steady, on track, on being good.  I’ve never learned that trick we are told to embrace as our children reach adulthood, that letting go thing I’ve heard about.  I wonder how many parents really have.

Instead, I ride each wave, every turbulent passage of my kids’ lives, feeling the ebb and flow of their experiences as deeply as my own.

There are times, though, when I wish I could disengage, when I imagine what a relief it would be to do so.

Often since my son’s move early this year I’ve considered our relationship, and my aspirations for him, the goals modified, adjusted or abandoned over time.  His diagnosis 21 years ago was the beginning of the end of almost every dream I had, back when his future seemed as boundless as my love for him.

No divine flash of acceptance acclimated me to the very different life in store for him than that which I’d mapped out so cleverly in my mind.  Submission occurred over years, covert moments of resignation so subtle I often didn’t even recognize their import, the setting aside of one dream, and yielding to another.

He’s living one of those altered dreams now, in a group home tailored and responsive to his unique needs.  His behaviors are accommodated, worked on, proactively addressed.  He is experiencing a fuller world than I’d dared hope for just a year ago.

Why, then, is it yet so difficult to view his life now as the fulfillment of at least one dream I’ve held on to, a circumstance realized after years of uncertainty and despair?

A few weeks ago I received a photo of Daniel taken at the Racine County Fair, which he attended with one of his specially trained aides.  Teeming with crowds and tempting distractions, it was an outing I wouldn’t have dared navigate on my own.

But there he was, engaged and laughing in the summer sun, sitting atop a camel.

He was clutching a boxy, harness-like contraption designed, apparently, to facilitate balance on the camel’s hump, giggling, it seemed, at the absurdity of his position, but enjoying it just the same.

My quirky, unpredictable son was riding a camel.

Laughing out loud in delight, I quickly composed a reply to Daniel’s case manager, who’d sent us the photo.

“Of all the dreams I’ve had for Daniel through the years, riding a camel was never one of them.  Seeing this picture, though, I can’t imagine why not!”

I recognized in that moment how bound I am to my old ideas of how life ought to be for my son, for both my children; what will bring them fulfillment, comfort, or — dare I say it? — happiness.  I understood, too, that so many of my dreams for both of them are my ideals, and mine alone, shaped through years of my own experience and regret, my own longings and missed opportunities.  The finely crafted hopes and dreams I have for my children may, in reality, bear little likeness to their own ideals at all.

How liberating this moment should have been.  How freeing to discern that my children, now adults, can — in fact, must — take the reins themselves, albeit in very different ways, weighing the worth of their experiences by their own standards, their own views on the meaning of “happiness.”  I really could let go at last.

Naturally, it didn’t work quite that way for me.  Lifetime habits are not so easily cast aside.  From my camel epiphany emerged a prickly, peevish reaction that I’ve struggled for weeks to articulate, a sullen acknowledgment of how desperately I would like events to proceed, just once, precisely the way I want them to.

Now that would be liberating.

How horribly self-centered, and how very common: We all want what we want when we want it.  But, oh, to have respite from the worry, the chronic concern over their welfare, their progress, their lives, which mean more to me than my own.  And I’m capable of convincing myself that this would be possible if they’d just follow those paths familiar and comfortable to me, if their lives, so vulnerable and fragile, so critical to my own, played out within the safety of my own comfort zone.

Screw the road less traveled.  I want my children traveling roads I’ve walked for them for years, if only in my dreams, whether they are roads of their choosing or not.

Oh, I know where this tantrum comes from, this petulant demand for a guarantee.  I’ve had enough of uncharted terrain, of stumbling along dark roads, praying for a lucid, benevolent end.  I want convention, the known, even if it’s known only in my fantasy.  How much safer than the fathomless range of possibility, all manner of depravity and disappointment, of suffering and loss the world may casually throw their way.

I want to let my guard down, to sink into the shelter of the way things were supposed to be.

And this is the crux of it, what it’s taken me the nine months since Daniel’s move to accept: that I expected his new life to be different than it’s turned out to be.  I thought I’d relax now that he is in competent, professional hands, and in many ways I have. But this transition has new complications, as well, fresh heartbreaks to adjust to, more painful because I didn’t see them coming. His life is better, infinitely better than it was, but not precisely as I’d hoped it would be.

The better part doesn’t include me.  And being a better part of his life again is precisely what I’ve been dreaming of for years.

Fortunately, I don’t often act on this selfishness.  I am living with the ache of feeling like an outsider when I visit my son, knowing I’ll never be the center of his world again.  I concede that, at least for now, his behavior deteriorates when I am with him, that our relationship is a trigger for the issues we are trying to curb.  I’m trying my best to accept that his need for me is diminishing, and that is how it should be, even though it feels like a loss I simply can’t bear.

I support with all my heart decisions I once could not have imagined my daughter making on her own, finding her way with confidence and grace.  I applaud her independence, knowing each new decision takes her a step further from the protective embrace of my influence.  I believe she knows that I’ll be behind her no matter what choices she makes, if she fails or succeeds; that she can always run back to me even as she’s pulling away; that I will be her champion for the rest of my days.

Weeks of agitation later, I understand that I’m here again, in another stage of letting go; it caught me unaware, as it’s done so many times before.  These periods have taught me, though, that any new experience surrounding my children can feel threatening, their lives in relation to mine in the balance, as I struggle to find my own place, my equilibrium, again.

My desire to hide, to look away from the bright new paths they may follow almost overwhelms me at times.  Who knows the distance those paths may carry them?  It is simply too painful to contemplate.

But holding them back would be more painful still.

by Kristen -

What I Have

IMG_4252 - Version 2

Considering how mundane it was, the photo I posted on Facebook received a gratifying number of “likes.”  Just the two of us at a picnic table on a summer day, Daniel wearing the unnatural grin he invariably supplies when told to smile.

By social media standards, life with my son won’t win any awards for excitement or variety.  We have few adventures to chronicle, no photos of thrill-packed vacations, sports triumphs or covetable jobs over which to humblebrag.  Our interactions are more modest affairs, and ever more predictable.

My friends are sensitive to Daniel’s challenges, though, and supportive of my longing to connect with him after the nearly eight years he’s lived away from home.  Their likes and kind comments mean a lot to me, and I recognize that their acknowledgment is one of the reasons I post photos of us at all.

I wonder sometimes if I’m actually seeking encouragement, a kind of validation that these unremarkable visits with my son are indeed worthwhile, that their value exceeds my own longing for something more.  Because I feel more like a spectator than the woman once at the center of his world.

In my lowest moments, I question my relevance to Daniel’s life now that he’s a young man, cared for so efficiently by a team specifically trained to address his needs, the behaviors that rendered my care for him obsolete.

I was told to expect a change in our relationship when Daniel moved to this group home eight months ago, a shift in our interactions now that I’m no longer steward of his care, freed from those demands to explore a more satisfying connection as he enters adulthood.

As he’s been out of my care for years, however, this prediction never quite rang true, and I’m beginning to doubt it will ever apply to the two of us.  More than ever before I feel I’ve lost my footing as his mother, this part-time role I’ve been playing since Daniel was just 15.

Or maybe I can’t accept that the path beneath my feet may be the one we’ll be traveling from now on.

The scripts for our visits seem to be written before I arrive, and I brace in advance for the ache of resignation which follows me home.  I know how these visits will unfold, week after week, the joy of seeing my son tempered by longing for the deeper involvement that’s been missing for months.  Crossing into Wisconsin on that dazzling summer morning, the caption for the photo I’d later post to Facebook had already formed in my mind, clear as storm cloud:  Picnic with Daniel on a beautiful day.  It’s not enough.  But it’s what I have.

*****

We met at a local park, and sat together while Daniel tore through the sticker book I’d brought him, affixing the familiar images in their slots as he’s done hundreds of times before.  I stroked his arm and caressed his summer-short hair, deflecting as best I could his repeated requests for the soda stashed in my car, his treat for after lunch.  His obsessions have intensified over the last few years, and his associations of me, what he counts on when I come, are rigidly defined.  There is so little I can give him now.  I don’t know how to break the cycle we are enmeshed in, how to change the tenor of our engagement without breaking his heart.

Perhaps I should have tried taking a walk, just the two of us, free of the eyes and ears of the aide who accompanies him wherever he goes, even on my visits.  It’s been months since I’ve been alone with my son.  The compulsive behaviors we are working to modify are too unpredictable to trust managing on my own, seem to be triggered, in fact, by my presence.  Old patterns are difficult to break with autism.  Memories of losing control of my son remain, vivid, haunting and formidable.

Yet time with him has come to feel like mandated, supervised visitation, the structure in place to help him dictating the terms of our relationship.  I miss time alone with him, privacy as I mother him the only way I can:  tender, murmured endearments meant only for him, cuddles and hugs that leave me self-conscious when witnessed by caregivers who never knew my son as a boy, when he was, first and foremost, my child.

I’m ashamed to admit that I crave freedom from the support he so desperately needs, the scrutiny of onlookers I sense weighing my effectiveness with this special young man who used to be my own.  The very competency of the staff rakes the embers of my doubt, which has smoldered for years; the guilt that my own care for him was ultimately not enough.  I am an interloper, an addendum to the life he is leading now, a life fuller and richer than he’s experienced in years.

I don’t know how to reconcile this sense of loss derived from what should be celebrated, the normal development of my child as he learns a new life apart from me.  The bond I’ve been longing to recapture since the day he left home is swaying now under the weight of distance, of time lost long ago.

There is a history I’m still reaching for, written through physical proximity, through countless days of bathing and dressing and snuggling and tickling, of high fives and blown bubbles and brushed hair, of tied shoes and trimmed fingernails, of tedious car rides and leisurely walks on autumn afternoons.  A history composed as I fixed meals under his curious eye, enjoyed in companionable silence or giggling banter, unfolding from our seats in the bleachers while we clapped in delight as the dolphins he once loved leapt and splashed at the Shedd Aquarium.

It’s a rhythm scored over years speaking a language without words, weathering together the outbursts and tantrums and setbacks, savoring the small triumphs of our uncommon life together.  While resting side by side against his headboard, books or flashcards across our knees; as night after night I tossed his stuffed animals onto the bed as he called for them, laughing, by name:  “Zebra!” “Cow!” “Wolf!”  It was written by the warmth of my hand across his forehead as I kissed him once more, and once more again, before turning off the light.  “Good night, sweet Daniel.  I love you, Daniel, my sweet, beautiful boy.”

*****

It would be simpler, wouldn’t it, to accept that he’s moved naturally into a new phase of life, and embrace with gratitude all the good that life offers now, the opportunities the framework of this life provides?  Perhaps he is more content than I can possibly understand, taking all he needs from me and our unexceptional visits, the routine we’ve established, the mild experiences of my Facebook posts.

But I believe his life will not be complete without me, and the rest of his family, at the core of it, and I can’t rest until I find that place again.  The procedural support is in place to help shift his behavior in a more positive, independent direction.  But he needs the emotional nourishment of his mother, too; of all of us who have loved him without question for a lifetime, whose love transcends all circumstance.

I’m not ready to concede that this is enough, that superficial visits are as good as it gets with my son, or our relationship to one another.  No line will be drawn beneath Daniel’s life, or my experience with him.  I have a role that only I can play, even as I stumble and gasp and bungle my lines.  Letting go of my dreams for him has never been an option.  Acquiescence to a lesser experience would weaken my fight for him, my advocacy, my hope.

That hope is painful sometimes.  But it’s what I have.