Farewell, dear friend

Kimball July 2012

An old friend of mine died last week, a man I hadn’t seen in 25 years until we reconnected briefly two summers ago.

Our lives went in different directions after a tumultuous relationship in my early twenties, though I’ve thought of him many times through the years.  I didn’t anticipate how deeply I’d feel this loss, as I knew he was ill, had known for weeks, in fact, that he was dying.

I was living in the city when I met him, sharing a tiny apartment above a travel agency with a sorority sister from college.  Our place had four cramped rooms, little natural light and virtually no closet space.  But at the corner of Clark Street and Belden Avenue, we were in the heart of Lincoln Park, and that’s what mattered when we were 23.

It didn’t take us long to discover Neo, the new wave, post-punk dance club just a block north on Clark, accessed through a graffiti-covered alley, a scarred metal door, and a bouncer with a couple of safety pins through his lip.

It fast became our go-to venue, close enough that we could run up the street during freezing Chicago winters without coats to worry about losing once we’d made it inside.  The music thrummed, pulsing and frenetic, driving the dancers who pitched and surged across the sunken dance floor.  The eight-foot aquarium behind the bar cast an undulating glow on the eclectic mix of habitués, patrons of the club “serving Chicago’s underground since 1979.”  We were thrilled to be a part of it.

A fight erupted one Friday night on the sidewalk in front of the club, between a guy I’d been talking to and another man, both drunk and throwing ill-timed punches as I stood by uselessly, shrieking at them to stop.

Kimball appeared from the alley then, a Neo regular I recognized from the club but had never met or spoken to.  A large man, massive, really, he moved with surprising, graceful fluidity, breaking up the flailing tussle without so much as raising his voice.  He picked a leather jacket up from the ground where it had been thrown, and gently handed it to my acquaintance, who took off down the sidewalk in humiliated rage.

I took off with Kimball.  We were together for two and a half years.

We couldn’t have been more different, he a self-described “fat Jewish kid from Skokie” with barely a high school education and no family of consequence, a Tai Chi master who wore the full-length robe of his discipline wherever he went.  He worked, at times, as a bouncer, but was often unemployed.  That didn’t matter, though: he was an artist, a painter who conjured mystical tableaus reminiscent of Salvador Dali or Hieronymous Bosch; a reader of Kafka and Ayn Rand and Mad magazine.  He was a storyteller who captivated, a listener whose attention made you believe you were the only person alive who mattered.

Everywhere we went somebody knew him, or wanted to, or pretended to.  He had a mystique, a charisma which attracted men and women alike.  Everyone wanted a piece of Kimball, had a story to tell of his exploits, his outrageousness, his larger-than-life personhood.

And I was his girlfriend, a diminutive blond from the North Shore with an expensive liberal arts degree, a new white Mustang and a 9-to-5 job at a dental association.  Insecure but hiding it, I was often called beautiful but never believed it, a girl of “privilege” desperate to claim my own place, to escape the repressive shadow of a stunning, accomplished mother who had and did it all.

Kimball offered that escape.  I didn’t realize then or care that I was simply trading one shadow for another.

It was doomed, of course.  The bond we’d fashioned from our incongruous lives was not destined to withstand the differences which drew us so compellingly to one another.  I don’t think either of us ever truly considered relinquishing enough of ourselves to accommodate the other’s expectations, our unformed yet firmly ingrained perceptions of what our real lives would be.  When it ended, undramatically, I felt more relief than sorrow.  But I never forgot him.  He was part of me, for a time, back then when I was young.

I recall one summer afternoon, near the end, when Kimball and I waited out a sudden, violent thunderstorm, huddled together inside my car as the rain pounded the roof and sluiced across the windshield, blurring the world beyond, sheltering us, for a few sacred moments, from all that waited on the other side.  Elvis Costello was crooning mournfully on the radio, and I remember the sense of melancholy I felt then, the certainty of impending loss.  Kimball held my hand and sang softly out of tune:  Alison, I know this world is killing you.  Oh, Alison, my aim is true.

He comes back to me now in snatches of memory, his broad face thrown back in laughter, his farcical antics with my roommate’s cat, his confidence, worn like armor, disguising his own scars, the detritus of a broken childhood.

And with him comes a yearning for those impetuous, unencumbered days when I was young, and still believed in limitless possibility, before I grew up and adulthood fully claimed me.  Those days when my parents were still alive, the home base I could run to; before I understood the mercurial nature of happiness, when inconsolable loss was as yet unimaginable, when I was still insulated by the arrogant gullibility of youth.

We saw each other two years ago at a reunion of Neo’s old guard, a gathering of regulars from back in the day I surprised myself by attending on a hot summer night in July.  We told each other we hadn’t changed, which in his case was true.  He was still robust, despite the disease which was slowly, inexorably taking him.

He reminded me of our attendance one Sunday morning at the church of my childhood, which I recall as a sort of last-ditch effort to find some spiritual middle ground on which we could build a future.  My mother was horrified, embarrassed by her daughter’s choice of boyfriends, and bringing him to church, no less.  Although he’d left his Tai Chi robe at home, Kimball’s blue hair was probably too much for her to publicly bear.

But Kimball was intrigued by the service, following the liturgy so familiar to me but utterly foreign to him.  He was touched by the unanticipated sincerity of those bourgeois suburbanites who welcomed him, and asked him to come back.

He told me that was the beginning, the spark that eventually brought him to God, and to a community which embraced him, and became his family.  I smile at the irony, he donning the comforting veil of faith as I suffered the loss of it, when my prayers for my son went unanswered, when I doubted so bitterly the belief I’d never had reason, before, to question.  I’m comforted now, knowing he had a doctrine meaningful to him, which, in a small way, I helped him find.

He was larger than life, larger than my life could hold.  Yet my memories of him evoke a simpler, less complicated time, an unguarded time.  We experienced that together, before the world crashed in, before I learned what I was capable of, what I could hold, when I needed to.

Farewell, dear friend.

Farewell.

Totally Unacceptable

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A few weeks back my son had a follow-up appointment with the new psychiatrist he visited in May to consider medication changes that may help curb his erratic behavior.

I participated by phone this time, unable to attend the appointment near my son’s residence in Wisconsin.  I was anxious to hear the doctor’s opinion on the slight improvement Daniel’s shown in the bolting, aggression and beverage-stealing that so dramatically impact his life right now.

His group home director was a few minutes late in calling to patch me into the appointment, and I was beginning to worry that I had the time wrong when the phone rang in my hand.

“We had a little disturbance,” Steve informed me, his usual cool slightly ruffled.  “But all is fine now.”  Apparently, Daniel had demonstrated first-hand one of the behaviors we are trying to control, grabbing the McDonald’s coffee cup from atop the doctor’s desk the moment he entered his office.  It took a few minutes to restore order before Steve called me and the appointment got underway.

The doctor indicated cautious optimism that medication may help reduce Daniel’s impulsivity, and we agreed to wait another month to see how things progressed.

“I can’t guarantee anything, of course,” he went on, echoing the prognosis given by countless other doctors, therapists and behaviorists over the years.  “This may be a behavior he always exhibits.  We’ll just have to wait and see.”

What else is new? I wanted to ask, but instead thanked him, joking that at least he got to witness one of the very behaviors for which we were consulting him.  He didn’t reply, merely repeating that Steve should set up another appointment for six weeks hence.

I got the full scoop the next day.

“What really went down with the doctor’s coffee?” I asked Steve eagerly, reaching him by phone the following afternoon.

“Well, he wasn’t what you’d call pleased,” Steve replied.  Daniel had lunged straight for the doctor’s cup, wheeled around and began gulping, the coffee splashing across desk, chair and rug in the process.

Steve couldn’t help chuckling as he described the psychiatrist’s outrage that a patient under his care for stealing beverages had had the temerity to steal his own, despite Steve’s warning that the coffee, in full view on the desk, was at risk.

“These doctors need to see what it’s really like sometimes,” Steve opined, rather gleefully.  “It’s good for them to get a taste of the problems they’re treating.”

“Oh, man!  What did the doctor say?” I asked, my mortification at Daniel’s poor behavior vying shamefully with relief that I wasn’t present for the fall-out.

“Well, he jumped up, and sort of yelled, ‘This is totally unacceptable!  This is totally unacceptable!’”  Steve described how he’d immediately intervened, retrieving the cup, now empty, while his aide went in search of paper towels to wipe up the spills, which, mercifully, had avoided the doctor’s open laptop.

“I mean, I warned him,” Steve continued.  “He knew the drink obsession is one of Dan’s main issues, so it shouldn’t have come as a great surprise.”

“Oh, for God’s sake,” I replied, my initial embarrassment on Daniel’s behalf turning swiftly to anger.  “‘Totally unacceptable’?  Does he think we’re brining Daniel for treatment just for kicks?  That’s like a pediatrician being pissed when a kid cries while getting a vaccination.  What an idiot!”

Steve agreed, while acknowledging that he’s had good results with this doctor in the past, that his “desk-side” manner didn’t necessarily match his competence as a psychiatrist.

“Doesn’t bother me a bit,” Steve went on.  “It doesn’t hurt for him to come down from his ivory tower now and then and see what his patients are really dealing with.”

But it bothered me a bit.  Quite a bit, actually.  I couldn’t get the doctor’s choice of words out of my head.

“Totally unacceptable.”

Oh, really?  You’re coming a little late to the party, doc.

Because I know from “totally unacceptable.”

“Totally unacceptable” is the dismal care my state provides its most vulnerable citizens, making it necessary for my son to live an hour and a half away from the people who love him.

“Totally unacceptable” is that Daniel’s autism is so pervasive he needs 24-hour care, his every action monitored and guided by caregivers.

“Totally unacceptable” is his struggle just to make his needs known, his frustration at our inability to understand him compounded daily for 22 years.

“Totally unacceptable” is his not being able to hang with his father’s 10-year-old twins, coaching his little bother’s baseball team, or rooting for his sister’s cheerleading squad; “totally unacceptable” is his absence when his big sister received her Master’s degree in June.

“Totally unacceptable” is his zero chance of getting married, raising children or finding fulfillment in a career of his choosing, living in a restricted, sheltered environment rather than pursuing life independently, making his own decisions, earning his own victories and learning to heal his heartbreaks.

“Totally unacceptable” is that my son’s quality of life is dictated by a disorder bestowed through no fault of his own, that his greatest joy these days is being allowed to select his own soda from a gas station mini mart when I visit him on the weekend.

“Totally unacceptable” is the fact that despite my profound love for him, I cannot make him well, cannot erase the effects of autism which have cost him in every way imaginable.

“Totally unacceptable” is that my young, handsome, loving son needs a psychiatrist at all, that this disorder will make him forever dependent on others, including doctors whose years of schooling don’t mean they have a clue about the reality of their patients’ lives.

So are we clear, doctor?  I’ve got the “totally unacceptable” thing covered.

Well.

Okay, then.

The other day I was reading a quote to my husband, attributed to a nationally known motivational speaker.  I scoffed at his simplistic approach to “acceptance”:  “Change the changeable, accept the unchangeable, and remove yourself from the unacceptable.”

“Another fool,” I remarked scornfully.  “‘Remove yourself’?  There are some unacceptables that you can’t just remove yourself from.”

“Well,” my husband gently countered, “he probably means that that is what we have to strive for.  We have to try to let go, to not let those things keep hurting us.”

As occasionally happens, my husband was right.  Of course he was.  But I still have a ways to go in this regard.  Incidents like this doctor’s priggish reaction set me back even after years of struggle coming to terms with Daniel’s disability, to accept that which, to me, is unacceptable.

We’ll keep trying to find whatever may help Daniel control his behavior, and live his fullest life possible.  And I’ll keep trying to reconcile the disparity at war in my own head:  that while I find the circumstances of Daniel’s life unacceptable, I accept him unconditionally.  I can’t imagine my life without him.

Maybe I’ll participate by phone again, though, next time my son has an appointment with his psychiatrist.

Face to face, I might do something unacceptable.

Family Togetherness

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George Burns once said that happiness is having a large, loving, caring, close-knit family in another city.

In that case, my husband and I are ecstatic.

Andy has such a family, spanning multiple cities near and far.  We all get together in July at an annual party my in-laws have hosted at their Michigan cottage for over three decades.  This close-knit group takes family seriously, gathering for Independence Day whenever the circumstances of their lives permit.

I’ve been attending this party since 1998, that first summer when we were “Andy’s girlfriend and her eight-year-old daughter.” His family’s generous welcome swept Natalie into a tide of exuberant children as I was embraced by grown-ups thrilled that cousin Andy had finally found “the one.”

The party has been a focal point of my summer for years.  Yet it’s been years since I felt truly whole at this model of family togetherness.  It’s been years since Daniel has been with us.

***

Days of list-making and strategizing helped quell my apprehension as I prepared for those weekends, and the unpredictable outbursts that marked Daniel’s life, especially in an unfamiliar setting.  No excursion was simple with my special little boy, least of all traveling three and a half hours for a long weekend away from home.  I knew my son’s quirks and needs would likely trump my fantasy of a breezy weekend together.  But those trips to Michigan were the only vacations we took back then, and we looked forward to them, particularly my husband, whose business keeps him busy from March through Labor Day.  This is the only weekend he takes all summer to enjoy his parents’ cottage and see his extended family.  It was an effort well worth making.

I never really relaxed on those trips, running after Daniel and monitoring his conduct, aware that his unusual behavior can be intrusive.  It was exhausting, in fact, keeping him on track and occupied, his interests so often at odds with the agenda at hand, cut off from the stability of home and routine.

It was worth it to me, though.  Of course it was.  We were attending a family party, and Daniel was part of that family, too.

And Daniel loved the cottage, racing down the wooden steps to the long stretch of beach, smoother than the rockier shores on the Chicago side of the lake, free of disquieting, public crowds.  He ran up and down the sand for hours, mesmerized by the pulse of waves across his feet, delighted by the splashes he made, again and again, tossing sticks and pebbles into the lapping water.

I didn’t mind chasing him when he strayed too far, bundling him in a towel and checking for sunburn; climbing the steps for bathroom breaks, cooling him with juice boxes and damp cloths to his forehead, then following him back to the beach for another round.

I didn’t begrudge Andy’s absence during those long afternoons, as he led the party’s golf tournament at the local course.  He needed those unburdened hours, reconnecting with cousins he’s kept close since childhood.  I got to know the beach-going contingent, through snatched conversations as I followed Daniel’s erratic motion up and down the shore.  Supervising him was becoming a two-man operation, but I could still manage him by myself for an afternoon.

Until the inevitable breakdown, stoked by sun, sensory overload, and a boisterous, unstructured milieu.  Daniel’s changes of mood, his wild, sudden tantrums, were nothing new, but more difficult to weather away from home.  I’d hustle him to our bedroom and a soothing bath, lay quietly with him across the bed, stroking his back and singing softly against his ear until he finally settled and calmed.

By which time he was ready to leave all together, just as the evening of the all-day affair was getting underway.  He’d pull me repeatedly to his travel bag, asking for home, or make his way down to the car when my back was turned, until at last I’d get him to sleep, and could rejoin the party for its few remaining hours.

***

I don’t remember making the decision to leave him behind, secure in the knowledge that he’d enjoy himself, as he always did, at his father and step-mother’s home.  Perhaps I reminded myself that he would in fact be happier, no longer forced to endure an event which ultimately left him overwrought and overwhelmed.  One year we simply conceded that the sprawling, festive party the rest of us enjoyed was not right for my son, however much I wanted it to be.

It was the right decision.  I know this.  The rest of us needed down time, freedom, for Andy to reinforce the relationships he’s maintained through his lifetime, for Natalie and I to find our places in the family we now called our own.

But the party was never the same, for me, without him.

And I understand now that the party was never the same with him, either, never matching the scenario I’d imagined, the nurturing, familial experience I wanted so badly to find in this occasion, for both my precious children.  Autism had already shredded the screenplay I was still trying to direct; I was merely clinging to pages of an untenable script, unwilling to accept that my family could never enact the story my heart had written.  This happy party scene had already been scrapped from the film of our lives together.  I just wasn’t ready to let it go.

***

The parties are easier for me now.  I can engage, and laugh, and converse, and, in recent years, help run the whole companionable show, unencumbered by my son’s needs and demands, my simmering worry that he’d turn miserable and unreachable in the midst of all the wonderful togetherness.

I still remember, though, the moments when he was happy there, lulled by the motion of waves and the warm sand beneath his feet.  I remember his joy as he ran to toss another stick across the water, pleased with his accomplishment, twisting his fingers in front of his face as he does when he is happy.  I wish those moments could have lasted, could have been enough to make the experience whole.  But they are what we have, and I cherish their memory.

A few years ago I called to tell Daniel’s group home director that I wouldn’t be visiting that weekend because I’d be in Michigan for a family reunion.  I described our earlier visits to the cottage, how we tried to make those weekends happen in spite of Daniel’s limitations.

“He loved it there, Sam,” I told him.  “He loved the beach, if just for a little while.”  My voice broke with unhealed regret.  Daniel had been going through a rough patch in recent months, and I felt guilty that I wouldn’t be visiting.  “I just can’t accept it, that he may never see that beach again.”

Sam was silent for a moment, then spoke with the quiet confidence that always reassured me.

“You’ll get him there, Kristen,” he told me gently. “It may take 15 years, but you’ll get him there again, someday.”

I’m holding on to that script for now.

There are still scenes of our lives yet to be written.

A Girl Like You

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As a teenager my daughter claimed an aversion to alarm clocks.  Although perfectly capable of getting up on her own, she maintained that the raucous jolt of an alarm set a negative tone for her whole day.  She begged me to wake her personally.

Being a loving mother I obliged, devising a wake-up formula just for her.

She really would have fared better with an alarm clock.

Barging into her bedroom each morning, I’d launch into one of several inane monologues, which all shared a unifying theme.

“Girls like you,” I’d bellow, “you want to sleep late in the morning.  But your moms won’t let you.”  Or, “Girls like you, you think because you’re 16 you can get up when you want.  Forget that!”  And occasionally, “Girls like you, you wish your moms would go back where they came from.  But they’re not gonna.”

Why I fastened on the phrase “girls like you” is a mystery hardly worth probing.  Perhaps an old boyfriend’s frequent muttering of a song refrain that’s stuck in my head since the mid-eighties — “Girls like you always like my style” — was the genesis of the whole thing.

Whatever its source, the “girls like you” drill became entrenched, despite Natalie’s pleas for me to “Stop!” as she pulled the duvet over her head and rolled to face the wall.

For good measure I’d confirm that she wouldn’t go back to sleep when I returned downstairs. “Can I really trust you to get up?” (shortened over time to “Can you be trusted?”)  I’d wait by the door for her aggrieved but unfailing response: “Yes!  I can be trusted!”

Sounds silly, doesn’t it?  Yet it is one of my fondest memories, a pattern woven into the fabric of our lives together, as my daughter grew from a child into the young woman she is now, ready to start the next chapter in her life.

A week from now she’ll receive a Master’s degree in Marriage and Family Therapy from Northwestern University.  My pride in her as one of the top students in her class is matched only by my certainty that she will make a positive mark on the world.

Do you remember those mornings, too, Natalie?  Did you take comfort in a ritual that was ours alone?  Sometimes I allow myself to believe that it was all a front, that your alarm clock phobia was simply a reason to feel me close as you began each day, bracing for whatever challenges adolescence threw your way, strengthened by the knowledge that I was in your corner.

I hope that was part of it, that you recognized that my love for you will transcend whatever unfolds, and you know that wherever life takes you now, I will always be behind you.

If only the act of waking you each morning could truly have shielded you, magically softened the experiences I never wanted you to know, the losses and heartbreak I’d give anything to have removed from your path.  I wish your passage to adulthood had been gentler, untouched by divorce and the sudden deaths of friends, the loss of my parents when you hadn’t yet fully known them, the profound upheaval of the family your father and I had imagined for you before autism changed our lives.

If love was all it took, your life would have unfolded as effortlessly as I’d dreamed it would when you were a little girl, running barefoot down the sidewalk in a flowered dress on a summer evening, laughing with the unfettered delight that was uniquely yours.  I wish I could have captured that moment for you, and made it last forever.

But that wasn’t necessary, after all, for you to become the remarkable young woman you are today.  There is something magic in you that did the job on its own.

Do you remember when I started calling you my shining star?  That’s all right; I can’t remember, either.  It has simply always been so.  You are the daughter every parent hopes for: smart and kind, engaging and beautiful and naturally, genuinely good.  A leader who accepts responsibility even when you doubt your abilities, a friend who can be counted upon, a sibling to a boy who has been blessed beyond measure to have you in his corner.

Even as his disability altered your life so dramatically, as his needs so often eclipsed your own, you embraced him, loving him even when he didn’t express that love in return.  You’ve never stopped trying to reach him, to convey your devotion in a way he will understand.  And there is no doubt in my mind that he does understand.  The strength of your love broke through.

You’re probably reading this and crying “Stop!” as you did all those mornings when I jarred you annoyingly from sleep.  Don’t worry.  I’m not claiming that you excelled at everything.  Piano lessons, for example, come to mind.

What sets you apart is your willingness to try, to test yourself, your commitment to see things through without giving up.  You’ve gone forward even when you felt like quitting, and have inspired me to do the same.  You have forged the painful chapters of your life into something meaningful, something hopeful and positive and worthwhile.

Stop rolling your eyes; it’s not just your mom saying these things.  Remember what your teachers have told you for the last two years: you are incredibly smart, gifted and compassionate; you have what it takes to be an excellent, effective therapist; and most important of all: you have a good soul.

Looking back now, I realize I had it wrong all those mornings with my “girls like you” routine.  There is no one else in the world like you, beautiful Natalie.  A girl like you is one of a kind.

My aim as your mother has always been to give you and Daniel what each of you needs, in spite of your vastly different abilities.  I prayed that I would not let your brother’s disability cripple me, so that in turn I crippled you; that I would not hold you back through my own grief and self-doubt, that my longing to protect you as recompense for autism’s impact would not hinder your own confidence and initiative.

I don’t know if I succeeded.  I pray you will forgive me for all I’ve done wrong.  But it doesn’t really matter if I succeeded or not. Because you have.

Your success is demonstrated in the way you are living right now, as I write this, with details still uncertain, as you are waiting to see what lies just beyond your sight.  And waiting for what is yet to be revealed is one of the hardest things in the world to endure.

But you are doing it, my beautiful girl.  You keep moving forward, strong enough to confess your fears even as you take the next step, and the next after that.  You remind me of your grandfather, who knew the only way through it is through it, who put one foot in front of the other until he reached where he aimed to go.  He is smiling down on you now, sweet Natalie.  He is so incredibly proud of you, as am I.

Each day I marvel anew at the woman you have become, standing on the threshold of independence and all the wonder the world has in store.  I know you will never give up until you have found your true place, the place you are meant to be.  And you will make that place better than it was before.  This is one thing I know for sure.

You can be trusted.

 

 

The Garbage Ditch

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My friend David Royko, whose blog, The Chronicles of Ben, relates his family’s experience with severe autism, recently posted a story on Facebook about a man who had confronted his young son’s bully.

The story has drawn nearly 12,000 comments on the Yahoo!News site from which David pulled the story.

Not surprising, as the headline blazed, “This man pummeled an 11-year-old kid for bullying his 9-year-old autistic son.”

According to the article, the father boarded the school bus his son rode, and targeted the child his son pointed out as his persecutor.

“The father grabbed the 11-year old by the hair, pulled hard and raised the child out of his seat, then shoved him on the side of the bus where the window meets the wall,” Richmond Police Lt. Mark Gagan told CBS San Francisco.

Charged with child abuse and bodily injury to a child, Burnis Hurd remains jailed pending $50,000 bond.

While many of those commenting on this story disapproved of his tactics, most seemed to at least understand the father’s fury at his son’s tormentor.

I fall into that camp of thinking.

Of course I don’t condone adults abusing children, under any circumstances.  Few of us do.

But I understand how chronic worry, stress and fear for our children could lead to behavior we’d never deem ourselves capable of, until we’ve experienced these emotions on a daily, relentless basis.

****

Yesterday I received another email from my son’s group home director, detailing several recent escapes, or “elopements” as they are called in the adult family home business.

Apparently seeking the soda over which he’s become so obsessed, Daniel ran outside while staff’s backs were turned, entered the house next door, and helped himself to soft drinks sitting on the kitchen counter.  Close on his heels, staff shepherded Daniel quickly back home and smoothed things over with the neighboring family.

He bolted again the next day, and while staff intercepted him on the sidewalk, the neighbors this time called the police when they saw him coming.

Officers responded, conferred with the group home staff who explained Daniel’s situation, and, according to the email, “all was fine.”

The email continued, outlining another confrontation my son had that very morning with a peer at his day program, another scuffle over a cup of coffee resulting in Daniel being struck with the coffee mug.

Distressing news in itself.  But my mind was still frozen on the image of my non-verbal, autistic son, unable to explain his actions (assuming he understands them himself) when confronted by armed police and a home owner justifiably furious at a 22-year-old breaking into his home.

Consumed by a panicked restlessness, I wanted to take action, any action, to relieve my mounting hysteria at one more piece of unnerving news: fury at the neighbors who called police; at the group home staff; at my son’s insistence on behaving this way; at the ghastly twist of fate that burdened him with autism.

My first impulse was to call my son’s group home director or shoot off an enraged email demanding to know what the hell was going on, why they weren’t safeguarding my son.  But I believe they are doing the best they can with Daniel, a difficult client whose obsessions are matched only by his cunning at fulfilling them.  I needed to calm down before I responded.

“I’m going over to the police station,” I abruptly told my husband, fueled by a sudden urge to speak to the communications officer I’ve known for some years, who heads up our police department’s efforts to protect its disabled citizens through awareness and tracking programs.

“Is she expecting you?” the receptionist asked when I arrived at the station.

“No,” I replied, giving my name.

“What is this regarding?”

“Project Lifesaver,” I answered, referring the program wherein disabled residents may be equipped with a microchip, fastened to clothing or shoelaces, which can trace their whereabouts should they wander from home.  By now I’d formulated a vague plan to get some literature on the program to share with my son’s group home director, or the police department in the town in which he lives.

After making a call, the receptionist told me the officer I sought was in a meeting.  “Your best bet is to leave her a voice mail.”

“Is there anyone else I can talk to about Project Lifesaver?” I asked.

“No, I’m sorry, you’d really have to talk to her.”

“Do you have any literature on the program?” I persisted.

She shook her head with seeming regret.  “You’d really need to talk to her.”

Disappointed, I turned to go, then asked, “Can you let her know I stopped by?”

“I can’t guarantee she’d get that message,” she replied.  “It’s best to reach her by phone.”

Emotional and irrationally irked by her blithe response, I plunged recklessly forward.  “So, you don’t have, like, a message system, little cubby holes or something, where you could leave a note for her?”

She’d gotten up from her desk by this time, and came toward the bulletproof glass separating us.  “I could leave it on her desk,” she replied, as if speaking to a child.  “But I have no way of telling when she may get the message.”

Accepting I was beaten, and recognizing that it was perhaps unwise to create a scene inside a police station, I left, fighting tears of rage and helplessness as I hurried back to my car.

My husband bore the brunt of my emotional overload when I got home.

“She didn’t want to be bothered taking a message!  I mean, I completely get that she was in a meeting!  I didn’t expect her to come running out!  But the receptionist did nothing to help me when I was in obvious distress!  Aren’t they supposed to respond to citizens of the community?  What if I’d been in real trouble?  What if I was teetering on suicide?  What if I was, say, a teenager who had just given birth in her car, and wanted to talk to the one cop she knew before abandoning her baby?  Instead of leaving her baby at a Safe Haven zone, she could have ended up doing anything!  She could have left her baby in a garbage ditch!”

My husband remained calm throughout my tirade, waiting patiently until I came to a breathless halt.

“‘Garbage ditch’?”  He squinted his eyes.  “What’s a ‘garbage ditch’?”

****

Years of incidents with my son have yet to desensitize me to the often irrational fears for his welfare that haunt me every day.  With recent concerns over his new living situation, my anxiety seems to be heightening even as I tell myself I should be used to it by now, that I should live through these events with greater equanimity.

That’s not how it works, though, maybe for any parent, but certainly not for those whose children have disabilities that make them particularly vulnerable in our society.

I’m fortunate that the consequences of my tantrum yesterday were not as grave as those of the father whose rage at his son’s mistreatment landed him in jail, and a morass of legal trouble he’ll be mired in for years.

My only consequence was making a fool of myself to my husband.  And he’s seen that many times before.

The communications officer I went to see called me back that afternoon, listened to my fears and offered suggestions for talking to the police department in my son’s new town.  She’s sending me information on several monitoring programs for disabled residents that may help Daniel’s situation.

She apologized for the indifference the receptionist had shown me, which already seemed trivial in light of more pertinent concerns.  I feel silly that I reacted as I did, even as I recognize that my behavior was born of years of worry for my son.

At least it didn’t land me in a garbage ditch.

This time, anyway.