Years ago, a friend of mine and her husband took their young son for surgery to correct a pectus excavatum, or “concave sternum.”  The condition wasn’t life threatening, but was noticeable and would likely worsen as he aged, interfering with sports or other physical activity.  He was about seven years old at the time.

The surgery involved a thin, steel rod — a knife, really — being inserted from the side of the chest, and pushed carefully behind the sternum to “pop” it out into place.  It was considered a routine procedure.

Sooner than expected, the surgeon appeared in the waiting room where my friend sat anxiously with her husband.

“We have a problem,” the doctor reported grimly.  The steel rod had accidentally nicked their son’s heart.  He was bleeding internally.

“But we think we can fix this,” the surgeon went on, and began explaining the correction they would attempt.

Stunned, my friend’s husband interrupted.  “Wait.  Wait.  Did I hear you correctly?  Did you say you think you can fix this?”

The surgeon looked him in the eye and somberly replied.  “Yes.  We think we can.”


I used to say that the difference between my experience with my daughter and that of my son was that while I understood that any calamity could befall my daughter — she could get hit by a bus tomorrow — there remained a reasonable expectation that that would not happen.  It has never been so with Daniel.  Autism swept “reasonable” out of our lives.  Yet for years I sought reassurance that his life would, eventually, turn out ok, would merge onto a normal path, even, if you can imagine, that he’d be the miracle child who overcame the disorder.

I thought I’d reached a point of acceptance that such assurances are not to be, even believing I could live without them, that I’d adjusted to the constant ebb and flow of his life.  I realize now that I haven’t reached that place after all.

Several months ago my son’s group home manager, Kristen, regretfully informed me that Daniel could no longer be safely cared for at his current residence, the home we’ve loved, where he’s seemed to flourish for two and a half years.  They felt they had no choice but to give the obligatory “30-day notice” that a new placement for our son was necessary.

This shouldn’t have come as the blow it did.  There had been incidents, serious ones, during the last few months.  In February, Daniel’s beverage obsession drove him to drink windshield wiper fluid he’d spotted in a neighbor’s garage.  He spent three days in the hospital undergoing dialysis to flush the toxin from his system.  Just weeks later, he eloped to another neighbor’s house, barged through their front door, and began guzzling from a gallon of milk in their refrigerator.

I knew about these episodes, even recognized uneasily that they were escalating.  Despite his challenges, however, we’ve been happy with the overall quality of his life, the attention he receives, grateful for the opportunities he’s had to experience at least some of the larger world.  He enjoys a unique, hard-won bond with his primary caregiver.  It’s been the best place Daniel has lived for years.

Yet in retrospect I wonder if I’d been intentionally blind, unable to face the inevitable consequences of behaviors we’ve struggled for years to understand, desperate for a break from the relentless worry of parenting a severely autistic child.  Distracted, too, by the demands of running for re-election for my job as township clerk, perhaps I could handle only so much stress at a time.  Was the campaign my excuse to shut my eyes, for a few precious months, to the chronic challenges autism presents, even as my subconscious warned of a crisis, the culmination of fears I’ve harbored for his lifetime?

Kristen described an alternative they had in mind, a “one-on-one” placement ten minutes from his current home.  The new house would be equipped with an electromagnetic locking system to prevent elopements, a feature unavailable in his current home, designated as an unlocked facility.  His care team would transfer with him, lessening the impact of the move.

Everyone, she told me, agreed that this arrangement is what Daniel needs, for his own safety and that of others: his case supervisor at the managed care organization we work with to oversee his residential needs, their behaviorist, their nurse.  Everyone except the contract department, which controls the flow of funding.  They rejected it as too expensive, and directed the MCO to look elsewhere, to find another agency, another Adult Family Home, otherwise known as a group home, capable of managing Daniel.

“We want to keep Daniel with us,” Kristen told me.  “His behaviors are difficult, and we don’t want him to end up in Southern.”  She was referring to a multi-bed facility in southern Wisconsin, the kind of sprawling institution that’s the stuff of nightmares for parents like me.

I should have known these words were coming, words I told myself again and again to prepare for.

But I wasn’t prepared.  I wasn’t ready to learn that yet another living situation had failed, that his behavior was more than even this capable staff could handle, that we needed to start again.

I wasn’t ready to hear the word “institution” in relation to my son.


That night I had to attend a campaign function featuring a national political figure, and set aside my panic over Daniel to interact with nearly a hundred jovial attendees.  I don’t know how I did it, but it must have been effective; my emotional shut-down carried through the weekend.  I didn’t — simply couldn’t — talk to anyone, not my closest friend or even my daughter, unable to face questions for which I had no answers, or probe a situation that left me breathless.  Holding the knot of fear and despair inside my chest was easier than facing it, than acknowledging again the powerlessness I’ve so often experienced in the course of Daniel’s life.

My husband understood this.  When I came home from work the following Tuesday he was on the phone, speaking to the supervisor of the managed care agency, trying to gather information on what came next, how we could fight the denial of the alternative our agency had offered.  He was told emphatically that the proposed home was not an option, but that the MCO would begin a search for another placement for our son.

“Hopefully,” she added, “it will be an Adult Family Home.”

“What does that mean?” I asked frantically when Andy hung up the phone.  “What does she mean, ‘hopefully’ an Adult Family Home?  As opposed to what?”

He didn’t need to answer.  I already knew.


I’ve spent weeks reflecting on why that word crushed me as it did, why it evoked the opposite of its intention, that of encouragement, optimism, possibility.  I remember the desolation that washed over me, the certainty that no matter the outcome of this latest challenge, this particular piece of shitty, that there would be more to come; that after all these years nothing has become easier, we are still battling a war we can’t win.  We are still only at hopefully.

And hopefully isn’t enough where your child is concerned, yet that’s what we’ve been working with for years.  Now my longstanding fear that we’d lose my beautiful, bright and loving son to an institution was an actual possibility.  The shadowy menace held in the dark of my heart had taken shape, ready and waiting.

Autism is years of hopefullys, of fervent, desperate prayers that the next situation, or therapy, or medication, will make a difference, only to face again the inescapable truth that the disorder is lifelong.  “Hopefully” had turned on me, and I hid in my insulated bubble of mute fear for weeks as the situation unfolded, paralyzed, unable to write, or even discuss it with family or friends.

It had beaten me.  I was done.

Except we don’t get to be done when we’re parents.


To explain the bureaucracy involved in the resolution of this crisis would take pages, and this blog is too long already.  Suffice it to say that things got worse before they got better.  The neighbors whose house Daniel had busted into back in March had called the police, and eventually the local newspaper.  Articles were published calling my son’s actions a “home invasion,” which left the occupant “traumatized.”  Readers commented online, including one who opined that people “like that” should not be allowed in the community but in institutions where they belong.

For several weeks it appeared that the only agency willing to accept our notorious son was a brand-new outfit in Fond du Lac, two hours further north, operating just one home, a dim, cramped, duplexed house with no fenced yard and owners comfortable with “restraint” when necessary.

It took two agonizing months, but in the end we got what we wanted.  Andy tells me that I played it perfectly, breaking from my paralysis precisely when necessary to move the process toward our goal.  I don’t know if that’s true, or if we were just lucky.  The owner of our current agency reduced the service rate originally proposed, leaving the contract department no excuse to deny his placement in the alternative house.  Daniel moved to his new, secure home a few days ago.  He seems comfortable there, happy.

On that first awful night of Kristen’s call, Daniel’s father Jeff told me to hang in there.  “Things always work out for Dan Man,” he reminded me.  I don’t have such trust in a larger plan right now, unable to forget the fundamental truth that things didn’t work out so well for Daniel, that his life was royally screwed before he ever had a chance.  I tell myself that I won’t be duped again.

A few weeks ago, though, Andy and I drove by the new house, which I’d toured but Andy hadn’t yet seen.  It’s a tidy, light-filled home with a swing in the backyard.  I can picture Daniel there, swaying gently as he blows his bubbles, shaded by the maple tree behind him, his aide Brittany by his side.

On our way back to the highway we passed a park where Daniel and I had shared a picnic two years ago, and without thinking I exclaimed, “Look!  That’s where we came that first summer!”  I laughed with exuberance. “Maybe, when things settle down, we can go there again…”

Hope remains resilient.  Or so it seems.


My friends’ son survived the accident on the operating table, and is now a handsome, heathy 27-year-old.

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.


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.

Can You Hear Me Now?


My 89-year-old mother-in-law is fiercely independent, a fact reinforced in late August by her failure to call for help after slipping off her kitchen barstool at 11 p.m., painfully injuring her right foot.  She didn’t want to bother my husband and me so late, or disturb her neighbors with a 911 response.

Turns out she’d fractured her ankle in three places.

Visiting her in rehab, Andy found her on the nursing center’s patio, her wheelchair parked at a table with three fellow patients, eating a pizza lunch.  She’s too polite to express it openly, but my husband knew immediately that his mother didn’t want to be there.

“So they’ve got you out here today!” he remarked with forced cheerfulness.  Every Friday the rehab center holds a themed luncheon, like a BBQ or luau.  “Must be pizza day!”

A week earlier a nursing attendant had invited her to join “special lunch,” which she graciously declined.  That Friday, however, a nurse had simply breezed in, wheeled her to the patio, and planted her with patients suffering from dementia in various stages. Despite her celebrated conversational skills, my mother-in-law found the meal a challenge.

She could have demurred, of course, stating that she preferred meals in her room, but that would have violated her code of courtesy.  Reluctant to appear rude or unreasonably difficult, she endured the special lunch experience without causing a fuss, even though it wasn’t what she wanted to do.

It’s painful to picture my proud mother-in-law this way, decisions made “for her own good,” her options gradually diminished by the infirmities of age.  Yet she retains the luxury of choice, the ability to exercise preferences, and the authority to express them, should she elect to do so.

I wonder how often my son’s preferences go unheeded, or even recognized.  He has lived in structured care for almost nine years, an arrangement inherently prone to conformity, to routine.  Yet even when he lived at home I so frequently misunderstood him, or didn’t understand him at all.

How often must he be frustrated by the disorder that has dictated the whole course of his life, unable to express clearly what he’s yearning for, or who he knows himself to be?

A friend suggested recently that Daniel may simply not know any different, or even recognize what he is missing in the typical world.  Autism and its attendant constraints is all he’s ever known, after all.  He may be more content than I can possibly imagine.  Perhaps it is only me who is suffering the weight of his loss.

This argument isn’t new to me.  I’ve told myself the same thing countless times, willing myself to believe it true.  How much easier than imagining my son trapped in a functioning body and mind, yet unable to direct the events of his life, or follow the path of his choosing.

Of course I appreciate many of his frequent, obvious requests — pop, fries, Denny’s, car — but what more complicated emotions go unnoticed?  Does he recognize the vast range of experience beyond the stifling hold of autism, and ache for that world?  Or has he simply given up on being truly understood?

As he matures and our relationship changes, I tell myself to let go of these haunting questions, this chronic doubt; to accept the limitations of Daniel’s life, rejoicing in all he is capable of, the joy he demonstrates for the modest slice of life he has been allotted.

Can any parent truly do this, though?  Do any of us accept “good enough” for our children, or stop longing to know what lies in the deepest folds of their hearts?

Over time I’ve set aside certain unanswerable questions, stopped demanding an explanation for Daniel’s autism, which, if granted, would change nothing.  The ache to know my son is not so easily relinquished, though, this duty I feel to understand and give voice to the unarticulated longings he may have harbored for a lifetime.  Who will carry this torch, if not me?

Daniel’s behavior has long been the most telling barometer of his mood, and there is evidence now to suggest that he is indeed content.  He appears comfortable in his group home, well-treated by his caregivers, and satisfied with his living arrangement.

Other behaviors are more complicated, his well-chronicled soda obsession the most troublesome example.  Is this simply an inexplicable symptom of the disorder, or his desperate bid to control one small scrap of a life orchestrated on his behalf, a life he is screaming to escape?  I wonder if I’ll ever live peacefully without the answer, if I am failing him, again and again, by not knowing him as he deserves to be known.

I consider the frequent and meaningful contact my daughter and I share, yet I don’t know all there is to know about her; of course I don’t.  I can’t even state with certainty that she is happy; I can only judge by her temperament, the tenor of her words, trusting the relationship we’ve forged over 26 years.  Yet, like my mother-in-law, she has the benefit of language, the power to communicate as she chooses.

Daniel and I rely on more subtle indicators to understand one another, like his willingness to let me go at the end of my visits. Often he’ll hasten my departure with a vocal “Bye!,” having procured his extra soda, his sticker book; after a drive together, the Chili Peppers cranked loud and liberating; after he’s reached from his seat behind me to caress my shoulder, reassured that I’ve come back again.

Is this all the fulfillment he needs from his life?  From me?  Can it possibly be enough?

I want to dismiss my friend’s suggestion as a well-meant but simplistic explanation for something infinitely more complex. Conceding to her theory feels like a betrayal, adopting a convenient, more palatable view of my son’s life to soothe my own loss, my own conscience.

Mustn’t I question, though, if I’m stubbornly projecting my sorrow over Daniel’s circumstances onto him?  Is it just me, unsettled and aching, who is hungry for more, as my boy becomes a man?

And I acknowledge, too, that part of me craves the reassurance that he is happy — that both my children are happy — because that would make me happy.  Oh, yes, I want that certainty, a gentle easing of the relentless burden of love.

Yet slowly I’m recognizing that Daniel is, in fact, expressing himself, that he is telling me who he is, perhaps even typically.

At times he is the engaged, affectionate Daniel, laughing, relaxed, unhurried, who brushes my cheek for the simple warmth of connection; who will peruse a book by my side as we did for years when he lived at home.  Other visits are almost routine, a necessary interlude he endures for my benefit, anxious to return to his own agenda, like any 24-year-old.  Even if his agenda includes a sticker book with The Aristocats for accompaniment.

Perhaps my son has been telling me what he wants all along, but I’ve been too consumed by on my own agenda, my own habit of despair, to hear him.

I recall the moment my daughter told me her boyfriend was “the one,” understanding intuitively that she was happy, truly happy, even as her words left me breathless.  Is she ready to make this decision?  Does she understand the heartache that may lay in store?  Yet I realized then the depth of my faith in her, my trust in her to know her own mind.

Can I learn to do the same with my son?

There is no forgetting the disparity between the life he deserves and the life he has.  I can try, though, to view his experience with eyes unshrouded by loss, to listen for what he his telling me, free of the weight of unmet dreams.  He deserves this much from me.  He deserves to be recognized, to be known as he wants to be known.

What might he teach me, if I am willing to learn?

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

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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.


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.