Somebody That I Used to Know

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Evidently I’ve been seeing myself all wrong.

This was made clear two days after my last birthday, as I stood checking my phone for emails while waiting in line at the post office.  There, a woman about ten years older than me swept in and called out cheerily, “I just love seeing seniors using cell phones!”

I received this news better than you might expect.  Too dumbfounded to take offense, I replied mildly that I had indeed entered official seniorhood just that week, but still thought of myself as young, hardly a grown-up at all.

“You know,” I continued, leaning forward confidentially, “besides using a cell phone, I still listen to rock and roll!”  I cocked a sly brow.  “And Eminem is, like, totally awesome!”

I’m afraid my hipness failed to register, but at least the woman next in line got a chuckle from my response.

That encounter made me wonder, though, if the self-image I’ve carried for years bears any resemblance to how others see me. My son’s recent move to a new living situation has me wondering, too, what impression I’m making on his care team, a vulnerability I didn’t anticipate after years of these transitions.

His case manager has advised us to expect a change in our relationship with Daniel, as he responds to a more challenging, stimulating environment, and we give up our roles as day-to-day caregivers.  We’ll gain freedom to enjoy more satisfying interactions, and be part of our son’s life on a deeper, more meaningful level.

“Your relationship won’t be better or worse,” Aaron has said a number of times, “just different.”

It’s a spiel I imagine him giving all the newbie parents letting go of children whose needs have so dramatically shaped their lives. For our children’s development to be successful, we parents must adjust just as they are doing.  It seems to be Aaron’s gentle way of telling us to back off now, and let them do their jobs, so our children can flourish in adulthood.

Yet I fear sometimes that his parental pep talk is aimed specifically at me, that he senses my longing to reclaim the boy I relinquished to residential care over seven years ago.  I imagine Aaron watching me, wary that I’ll sabotage Daniel’s progress through my neediness, my grief at having lost him once already, a grief that has never fully healed.

Does he see a woman clinging to an ideal already gone, the boy Daniel still was to me when he left home?  Back when I was the one who knew him best, the person he needed most, the one he sought, in his singular fashion, to comfort him?

Does he see a mother, whose son has spent nearly a third of his life away from home, pining blindly for the day he’ll come back? A mother threatened by her son’s move toward maturity, who fears losing more than she’s already lost?

As Daniel transitions into a new life, and the future I want for him actually seems possible, my relationship with him feels more tenuous than ever, and I know I am that woman, whether Aaron sees me this way or not.

It’s taken me the two months since his move to acknowledge that my relief and joy at Daniel’s encouraging start is tempered by an ache for the days when he was truly mine, before autism tore us apart; when his days began and ended with my voice, my touch, my assurances of a love that would last forever.  I recognize that a part of me has been waiting seven years to get him back, even as I’ve known this will never be so.  The son I once knew is gone for good.

I want to assure Aaron that he needn’t worry, that I’m an old hand at this:  I know all about letting go, the wrenching loss of doing what is best for my son.  And I know, too, the blessed, coveted freedom from the demands of caring for him, the opportunity to breathe again, to have my life again as my own.  I know that freedom, and I know its cost.

It is the gradual unraveling of our relationship, the fabric of our lives worn thin by time, by distance, by the insidious disorder that brought us to this place.  It is clutching the frayed edges of a bond that in all its mystery was once close and touchable, woven thick and warm and comforting through years of ordinary, intimate moments spent together, routines we made uniquely our own.

It is the recognition that in many ways my son is now a stranger, that mere visits couldn’t fully bridge the gulf between us as Daniel grew from child to young adult, miles away from home.  It is the sense that the best days with my son ended seven years ago; it is fearing that the lyrics of the Gotye song I so often listened to on my drives home from Wisconsin now apply to my own child:  Now you’re just somebody that I used to know.

Maybe Aaron sees me as a mother desperate for a time gone by.  He wouldn’t be wholly wrong.

But I am also a mother who has transitioned along with her son for over 20 years, a mother able to do so again.  I’m a mother profoundly grateful for this fresh chance, willing to learn a new way of connecting with my son, ready to be whatever he needs me, now, to be.  I am a mother who understands that love is not always enough, yet love remains more powerful than grief.

It’s Aaron’s role to ask us to step back and let go, to allow his team to guide my son toward the goals we believe he is capable of achieving.  And it’s my role to do so, to let go of the boy of my memory, and embrace the young man he’s become.

But there’s letting go, and there’s letting go.

My heart will not surrender all that has shaped our lives together, or my most cherished role as his mother.  That woman will always be right there, behind him.

I can’t see myself any other way.

A Good Bad Hair Day

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I’d really like to stop caring about my hair.  It’s been the bane of my existence for years, rarely turning out the way I want it to except when I have nothing more exciting planned than a trip to the hardware store.

But while I do spend a tedious portion of each day with my blow dryer, I’m no longer bothered if the results aren’t perfect.  With age comes wisdom: my hair really won’t change my life, or even a moment of my day.

I wish I could adopt a similar attitude about my son’s hair.  Despite of an array of more serious concerns — aggression, bolting, beverage stealing — I still care about appearances.  His appearance, anyway.

Daniel’s disability overruled the reticence regarding children instilled in me for years by my mother.  In her view, displaying pride in her children was a recipe for losing face, an invitation to all manner of embarrassing failure she’d rather avoid until she “saw how we turned out.”  Not once do I recall her praising me to another person.

But autism granted me permission to claim one small advantage in my own child’s favor when the odds were otherwise stacked against him: He is physically attractive.

Were she still alive, my mother would be aghast.  But I say it unabashed: My son is beautiful.  He has that going for him.

His teachers adored him, cuddled him, and melted at his smile.  They loved his hip, laid-back style in the trendy clothes I chose for him.  Friends and strangers alike commented on his looks, perhaps able to summon nothing more substantive to say about a child whose eccentric behavior left them bewildered and tongue-tied.

I didn’t mind that their praise was superficial.  If Daniel’s looks gave him even the slightest edge as he faced the world, I welcomed that edge.  Playing up his physical appearance was one job I could manage successfully as the rest of our world spiraled out of control.

Letting go of that job six years ago was a loss I still experience.  We’d come to accept that residential placement would someday be necessary, but didn’t expect his escalating behavior to force that outcome when he was still a teenager, when he was still, in my heart, my little boy.

I didn’t know then how achingly I would miss the tangible care of my son, the proximity to tend to details he’d otherwise neglect, the tender, intimate routines on which we’d built our relationship together.

I miss supervising his shower, scrubbing his back as water splashed my face and clothing, reminding him to keep rinsing until his hair was clean.  I miss bundling him in a towel in the steamy bathroom, fussing over his complexion and combing his hair, trimming his nails as he sat fidgeting on the edge of his bed.

I miss washing his favorite pajamas every day so he’d never have to sleep without them, checking that his jeans weren’t too short and his dark T-shirts didn’t fade in the dryer.

I miss his shy, satisfied smile as he’d inspect his reflection in the salon mirror, brushing his fingers across his freshly trimmed hair.

I miss being close at hand, ensuring that my son is not dismissed by a world that sees only autism’s messy side-effects, making sure that he is treasured, and honored, and cared for.

And he is cared for.  Well cared for, if not to the standards I once maintained so diligently.  His adult family home is staffed by professionals who do their jobs well, taking care of my son as they are hired to do.  They seem genuinely fond of Daniel, too. Despite his quirks and alarming behavior, he still charms nearly everyone he knows.

There was just the little problem of his hair.

Months after moving to his new group home Daniel’s hair still had not been trimmed.  We offered to find a barber ourselves, but were assured by his home director that he’d take care of it.  With so many other concerns vying for attention, it was easy to let a haircut slide.

Luckily for him, Daniel has his father’s hair, a glossy, medium brown, that on a typical 22-year-old would look fashionable curling so long around his neck and across his forehead, à la Josh Groban.

But Daniel isn’t typical.  Instead of a studiously careless, tousled look, his hair was just tousled.  Disheveled.  A mess, really, even as staff tried their best to keep it at bay.

I don’t know why something so trivial came to bother me as it did.  We’ve had plenty of more pressing challenges to contend with since his transition from residential school to adult family home.

But maybe that is the answer, right there.  He is growing up, every day growing further from my care, from holding him close, tending to his needs on a regular, comforting basis.  We’ve been traveling to adulthood for years, but I’m not ready yet to let him go.

Daniel’s hair had finally been cut the last time I visited him.  It is a singularly awful haircut, his worst since my own attempts when he was three years old.

But that didn’t matter.

His caregiver couldn’t wait for me to see his new hairstyle, smiling as I cupped his face and stroked his forehead, visible again at last.

She was thrilled when I commented on his sparkling white henley, a welcome change from the worn-out, orange mesh garment that, for reasons known only to Daniel, he’s insisted for months on wearing whenever he knows I’m coming.

Eagerly she described how she’d coaxed him into wearing the new Nikes I’d bought him weeks ago, which he’d thus far refused to even try on.

She was beaming with pride at how handsome my son looked for his mother.

His haircut didn’t make a difference, after all.

But the woman caring for him did.

This Too Shall Sort of Pass

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We brought Daniel to a new psychiatrist recently to consider medication changes that may improve the erratic and compulsive behavior so limiting him right now.

Taking Daniel anywhere these days is dicey, especially an untested environment like a new doctor’s office.  His group home director brought along two additional aides to assist in the event Daniel became agitated.

To our collective relief, however, he did great, sitting calmly during the consultation, and only occasionally asking me for “car.” The doctor ordered a complete blood work up before any medication decisions are made, and after visiting with Daniel for a while, I drove the hour and 40 minutes back to Illinois.

My church’s newsletter was waiting in the mailbox when I arrived home, the Focus on Health segment revealing that May is “Mental Health Awareness” month.

I thought back to our appointment a few hours earlier, when the new doctor compiled a medical, behavioral and family history of my son.

“Have you or Daniel’s father ever experienced any mental health issues, like depression, anxiety or inability to cope?” he asked.

I paused for a moment, then answered as succinctly as I could.

“Yes to all,” I replied.  “For 20 years.”

I doubt this was the response he expected, but the doctor seemed to understand me:  it is depressing, anxiety-producing and difficult to cope, acknowledging that your child’s disability, with its continual challenges and heartbreak, will be lifelong.

The newsletter article I’d begun reading quoted a faith-based mental health professional: “Faith gives me a sense of perspective and teaches me that life is full of seasons.  Whatever I’m going through is temporary and will pass.”

How often have we all heard that well-meant platitude:  This too shall pass?

But what if it doesn’t?

That question has haunted me for 20 years, since the winter morning in 1994 when a therapist told me, unsparingly, that my son would never be normal.

My faith in things “working out for the best” took a serious hit in the years following that pronouncement.  Denial protected me for a while, but eventually I conceded to the truth:  Daniel’s life, and my own, were irrevocably affected by autism.  He would never be normal.  This would not pass.

I wish I could be a person able to profess “this too shall pass” and actually mean it.  I guess it is most honest to say that I believe in the phrase in principle, and recognize that in most cases it applies.

But 20 years of “autism management” have taught me, as it has countless other parents, that even during periods of relative calm, the next challenge, or crisis, is forever lurking, out of sight but never out of mind.

The last few years have been consistently stressful where Daniel is concerned, and I recognize that my exhaustion colors my perception right now.  But the unalterable fact remains:  autism is not a difficult “phase” or period to be endured temporarily, until we get to the other side.

Especially now, during a long-running period of daily strain, it’s a hard sell to dub Daniel’s condition as simply a season of his life, which, like all difficult periods, will eventually subside.  We will never stop worrying about him, or dealing with autism’s cruel consequences.

Despite my well-honed cynicism, I finished reading the article, written by my church’s lay minister of health, a woman I’ve known and respected for 30 years.  The segment talked about resilience, defining it, in simple terms, as adapting well in the face of adversity.

And I suppose I have been resilient, although the “adapting well” part is open to debate.  It’s been painful learning to live with an uncertainty that is actually a certainty:  we don’t know what the next challenge for our son will be, but we do know that further challenges, possibly severe challenges, lie ahead.

I’ve learned to appreciate the moments, though, within the larger scope of autism, which bring relief, or comfort, or sometimes pure, unadulterated joy.

We were all anxious about Daniel’s own ability to cope with the new doctor appointment that day, fretting in advance about his reaction to a situation that could potentially result in an ugly scene.  It has happened many times before.

But that day he did beautifully.  Even when a nurse was brought in to take his blood pressure, and the staff held their breath in anticipation of a rebellious outburst.

Instead, Daniel removed his jacket when I asked him to, and without prompting held his bare arm forward, calmly allowing the nurse to wrap the pressure cuff around his bicep.  He even picked up the squeeze bulb and handed it to her, uttering his multi-purpose word, “Dauh,” to encourage her.

I was so proud of him in that moment.  It was a good moment, within a larger season of moments, that we will get through, one at a time.