by Kristen -

Good Enough

The day before she planned to board a plane to Chicago for Christmas, my sister-in-law tripped on the stairs of her home, tumbling all the way to bottom.  Fortunately, she was able to call a neighbor, who drove her to the hospital, where doctors diagnosed a nasty concussion and badly sprained ankle.

Advised not to fly for at least a week, she spent the holiday alone, half a country away from the family who loved her.  It was not the annual reunion any of us had hoped for.

It could have been so much worse, of course, as we told ourselves repeatedly over the next few days.  Living alone, she may have lain unconscious for hours before someone found her.  She could have been permanently injured, even killed.  The possibilities don’t bear thinking of.

She was, in fact, lucky.  Yet luck is a relative term.

I’ve struggled with this kind of contradiction often since my son’s diagnosis, seeking the bright side, the countless positives in Daniel’s life to counter the implacable weight of autism.  These self-imposed pep talks seldom evoke the level of gratitude I believe I should feel, however, or appreciation for the grace I’ve been granted, again and again.  How often have I told myself that what I have, what my son has, should be enough, even as my self-pity shouts me down: “Of course it could be worse!  Of course it could!  But it’s bad enough as it is!”

Slowly, though, I’m emerging from this kind of wallowing.  This past Christmas I realized that, perhaps, I’m making some progress after all.  And I don’t know how I feel about that.  It’s taken me weeks to wrestle my emotions into cohesion.

We brought Daniel home for a day visit on Christmas Eve, an excursion we haven’t attempted in several years.  It’s easier on everyone, including him, to simply celebrate at his group home in Wisconsin, rather than tempt the erratic behavior that makes his living there necessary with transitions back and forth from the environment he’s grown accustomed to over the years.

This year, however, I decided to try again.

The holiday season is not particularly joyful for me, and despite my grim resolve each year to make it so, over the last decade it’s become a period to be endured rather than savored.  Exceptional work demands at the close of last year had me more anxious than ever, and a wise friend urged me to set aside, just this once, a few of the traditions I’ve felt duty bound to maintain, even as they brought more stress than satisfaction.  I tried to take her advice.  Christmas 2016, for instance, marked the first year since my children were born that I didn’t include their photo with my Christmas cards.  And what do you know?  The world survived, just fine.

Maybe this frame of mind helped ratchet down my expectations for Daniel’s visit, let go just a bit of my perfectionism and take the day as it came.  It didn’t have to be perfect; almost certainly it wouldn’t be.  And indeed, it wasn’t.

My Facebook post that afternoon painted an idyllic portrait of family togetherness, drawing supportive comments from my circle of friends.  My daughter, her boyfriend, and their enchanting puppy were home as well; we dined at Denny’s, Daniel’s favorite restaurant, and exchanged gifts around a glowing Christmas tree.

Pictures rarely tell the whole story, of course.

I’d planned to give Daniel his Christmas stocking, bulging with favored treats, before leaving for lunch, but he showed little interest, leaping from the sofa and pointing to the door — “Denneh?  Denneh?” — again and again until we tossed the stocking aside in resignation.

At the restaurant he was allowed soda to his heart’s content, but this did nothing to slake his obsession with the beverage, demanding more as soon as we got back in the car.  Nine years after leaving Illinois, he still remembers the precise location of the grocery store nearest our house, and pointed in its direction as we drove quickly home, praying he wouldn’t wet his pants before we got there, a very real possibility due to his public bathroom aversion.

Back in the living room once again, we tried enticing him with the mountain of merrily wrapped gifts assembled under the tree. He was having none of it.  “Stoar?  Stoar?”  His requests became more belligerent as I tried coaxing him with a sticker book, my well-stocked refrigerator sadly lacking the 16-ounce bottle he apparently had in mind.

“Stoar!”

One photo I posted on Facebook was especially popular, my once-little boy now towering over me, hands on my shoulders, looking deeply into my eyes as I smiled up at him with joy.  It elicited tender comments from far and wide.

“I can see the love in this picture!”

“You are his world!”

“This picture says so much!”

It said plenty, all right.  It said our whole happy Christmas visit had been hijacked by Daniel’s unremitting obsession; that I was desperate for the holiday’s magic to break the vicious hold of autism for just one day.  That as that photo was snapped, he’d just released my chin after pulling my face to his, laser-focusing as he repeated, again and again, “Stoar?  Stoar?  Stoar?”

We gave in.  Armed with a bottle of Coke Zero chosen from the gas station minimart, Daniel finally relaxed, giggling, posing for photos, enjoying time with his family before Andy drove him, happy and willing, back to his Wisconsin home.

It was an exhausting afternoon, another celebration driven by the disorder that has dictated the course of our lives.  But while the day failed to unfold as smoothly as I had hoped, it didn’t crush me as some past Christmas ordeals have done.

I don’t know why this was so.  Was it because my daughter was so obviously happy, or that her boyfriend touched me so deeply with his maturity, his affection and respect for his girlfriend’s special brother?  Was it the joy of their dog Mattie’s exuberance, the fun of having a puppy in the house?  Was it that we made it through lunch at a restaurant without incident, no hapless diner’s soda wrenched from their unsuspecting hands?

Did the positive, this time, simply outweigh the negative?

I can hardly believe it’s that easy, because I don’t do simple very well.  Separating my feelings around Daniel’s disability from the rest of my life is an ongoing challenge; his autism colors everything in my world.  With Daniel’s struggles so blatantly on display, enjoying a festive holiday feels like a betrayal, acceptance a sell out to my own longing for harmony, for normalcy, for simple. Daniel’s reality is my own, and conceding that it is good enough is defeat, like giving up on a Christmas photo.

A mere bottle of soda satisfied my son, but that wasn’t the way I wanted it: I wanted my will for Daniel to prove stronger than his fixation, than his disorder itself.  That kind of transformation doesn’t happen very often with autism.  I know this by now.  I still hope for it, though, unwilling to accept circumstances as they are because they could be, should be, so much better.

Yet this year I felt the grace of truth more powerfully: those circumstances could be worse.

And I hold these truths now as well: Daniel’s smile as he ran from Andy’s car to our back door, beaming, eager to be home again; his delight as Mattie pranced on his bed, licking his hands and face while I tightened his shoelaces and brushed back his hair.  His careful examination of the tree ornaments, touching, tapping, as he did when he was a boy.  His willingness to return at the end of the day to the life he knows now and embraces, untroubled, secure in our bond and our love.

For a few hours on Christmas our family was together.  Imperfect, stumbling, winging it, but together.

And this time — dare I say it? — that was good enough.

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 -

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 -

What I Have

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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.

by Kristen -

New Light

Image 3 - Version 3

When my son was ten years old I read an essay by Chicago writer and educator Robert Hughes, “Getting to Know the Family Savant.”  He described the painful process of abandoning the “great cosmic myth of compensation”: that autistic people are automatically gifted with some extraordinary genius — a talent for music, an aptitude for languages, a startling, photographic memory.

Instead, Hughes gradually realized that his son Walker’s true gift was simpler, but no less valuable: his exuberance for life, his innate, irrepressible joy, visible “…on the face of the beaming boy himself, the knack for happiness he had then and has still.”

I was so moved by the essay that I wrote Mr. Hughes an embarrassingly long letter, thanking him for helping me recognize that, despite the devastating diagnosis of autism, my son, too, was happy; he was, in fact, the happiest person I knew.

I held that belief for a long time.  Despite his ups and downs, his extreme behaviors and outbursts, Daniel still seemed, for many years, satisfied with his life, unconcerned with what the wider world had to offer.  I consoled myself, believing he was content, secure, and confident that he was loved, that his autism even insulated him from the conflicting and messy emotions the rest of us regularly endure.

Over the last few years, though, my faith in that scenario has eroded.  As the degree and frequency of his outbursts increased, as his quirks became rigid, limiting obsessions, as the scope of his world devolved with each passing week, I began doubting that he could possibly be happy at all.  His behavior was screaming otherwise.

****

Never than in the past twelve months have I felt more powerless to help my son.  After an exhaustive search for his adult home, last January we selected a highly recommended care agency with a reputation for success with difficult behavior cases like Daniel.  As an added bonus, we knew the house director from Daniel’s previous school in Wisconsin.  Everything pointed to the positive and forward-moving experience we so wanted for our son.

Yet it didn’t materialize.  We soon recognized a pattern of erratic response from management to our questions and requests, from the very house director in which we’d placed such faith.  From home maintenance to haircuts to implementing the active and engaged lifestyle promised for Daniel, nothing panned out as planned.

His challenges became more entrenched than ever, with alarming new behaviors, like “elopement,” or bolting from the house, emerging after just a few months.  His day program, designed to provide purposeful, satisfying activity, fell through as his beverage-stealing obsession disrupted staff and clients alike.  By August he remained at home almost all the time, with little stimulation to channel his energy or the intelligence I’ve known for years he’s possessed beneath his unpredictable exterior.

No one in our family was satisfied, none of us willing to accept that this was as good as it would get for our cherished son and brother.  As parents in our situation understand all too well, however, the “obvious” solution — move him — was anything but simple.  Resources for people with Daniel’s challenges are scarce and hard to secure.

And even if we found an alternative, what impact would another move so soon have on Daniel, tearing him from the day to day caregivers whose devotion to him was never in question?  How would he react to another transition of this magnitude?  And the most haunting question of all: what if it still didn’t get better?

We’d given this agency more than a fair shot at managing Daniel’s needs, though, lending our support in every way possible. Waiting and hoping that life would improve for him there was no longer an option.

As it happened, another agency we’d seriously considered a year ago had kept in touch, their case manager checking periodically during the past twelve months on Daniel’s progress and adjustment to his new situation.  When our advocate from Wisconsin’s Department of Aging and Disability inquired in early November about Daniel’s possible transfer to their care, the case manager was enthusiastic, and immediately set the complicated application process in motion.

The ensuing weeks passed in a cascade of emails and phone conferences; discussion with the new agency and tours again of their facilities; a follow-up visit and in-person reassessment of Daniel at his current group home; and anxious, breathless days of waiting, of questioning and speculation, of daring, again, to hope that we might find the right path for our son.

In mid-December the case manager delivered the news: the new agency in Racine, an hour closer to both my husband and me, and Daniel’s father and step-mother, was willing to rearrange their current staffing and housing openings to accommodate Daniel, and offered him a place at one of their adult family homes.

They actively wanted our son.  They saw his potential, and believed they could help him achieve a fuller quality of life.

****

It’s been two and a half weeks since the bitterly cold day Daniel’s father and I said goodbye to him at his new home, a well-maintained, carefully decorated house on a quiet residential street.  His bedroom had been outfitted with new furniture, bedding, and artwork on the walls, a flat-screen TV and DVD player set up and waiting.  Staff was in place to welcome him, ready to manage whatever behaviors he threw their way, their philosophy of inclusion, of continual activity, stimulation and involvement in the community, regardless of challenges, an encouraging change from the restrictive environment Daniel had grown accustomed to in the past year.

Just hours later I received a “selfie” of Daniel and his case manager, Aaron, the man who had, in the week before the move, twice traveled an hour and a half to take Daniel on short excursions, so Daniel would know him and be more comfortable in his presence.  I couldn’t tear my gaze from that photo, Daniel’s face bearing the hint of an intrigued smile, as though he and Aaron were already sharing an adventure, something new and exciting and worth exploring.

The very next day Daniel went to an indoor water park, an activity he hasn’t enjoyed in years.  An emailed photo showed Dan waist-high in the pool, Aaron’s hand resting on his arm, guiding him, literally, through new waters with gentle, calm assurance. One week later, another pool photo: Daniel smiling broadly, confident, on his own in the pool, his face open and sparkling and alive, his eyes radiant with joy.

He’s made successful trips to restaurants, to Target and Sam’s Club and Starbucks, to a local museum; he navigated a company-wide “social” at a roller rink, only moderately distracted by the concession stand, which once would have derailed him completely.  These modest outings are huge for my son, whose compulsive behaviors had just weeks ago nearly eclipsed life outside his group home.  They are the activities we’d imagined for him, chances to discover, to grow, to be part of the larger world.

****

I approach hope sideways these days, wary now of plunging recklessly into the shimmering light of dreams, of believing too soon in the possibilities I want so desperately for my son.  The last year cured me of that, trusting in a shiny new beginning that became instead a slow-motion crash, each incremental slide more devastating than the last.

Yet there is no mistaking the new light in my son’s eyes, the expectation and curiosity that’s been missing for months.  He seems to recognize already that he’s on a new road, a different journey he is eager, now, to travel.  He is responding to staff’s repeated assurances that he is their “great guy,” their “kind guy,” their “happy guy.”

I hardly dare to believe it, but it seems to be so.

He is my happy guy again.

 

Robert Hughes responded to my letter in 2002 with a thoughtful letter of his own.  His kindness encouraged me to keep writing ever since.  His memoir about life with his son, “Running With Walker,” is available here.