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.

Sad but True

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An editor once told me that an essay I’d written was just too sad to be inspirational.

I hadn’t really been aiming to inspire, but simply tell the truth as I knew it.  And sometimes the truth is, undeniably, sad.

The truth hit me full in the face today when I got an email from my son’s group home director.  I knew a message like it would come eventually, but still was not prepared for it.

It’s been three months since Daniel moved to his new home in Wisconsin, after aging out of the residential school he attended for six years. It wasn’t easy to find this new home, for a variety of reasons, foremost being Daniel’s behavioral history, which includes aggression and biting.  Finding qualified facilities for people like my son is challenging, to say the least.

Most of the time Daniel is easy going, engaged, blowing his bubbles or working a sticker book, enjoying the DVDs he knows by heart.  He laughs often, loves music and riding in the car.  He has adjusted well to his new home, and is usually compliant and easily occupied.

But he can also turn inexplicably aggressive, and sometimes violent.  While infrequent, his outbursts are sudden, rage-full, threatening.  He’ll lash out, actively seeking to hurt the people caring for him or getting in the way of what he wants.  He is capable of becoming a person almost unrecognizable from the bright and beautiful young man I love so deeply.

It is incredibly sad to type these words about my son, and know that they are true.

Two weeks ago Daniel began attending a day program for disabled adults four mornings a week.  We knew instituting this new regimen wouldn’t be simple, as, like many autistic persons, Daniel does not typically embrace changes in routine.  Nevertheless, we were anxious for him to begin structured, purposeful activity, however modest, rather than spend day after day within the walls of his group home.

The email I received today detailed two incidents which occurred at the new program in the last few days.  In the first, Daniel grabbed a pot of coffee and splashed the hot liquid across his legs while trying to gulp some down before it was taken from him. The next day he became agitated, without apparent cause, and lunged at his caregiver, then bit the peer who tried to intervene, breaking the skin and necessitating an obligatory trip to the hospital.

Caregiver, peer and Daniel are fine, I’m told, and the group home manager remains confident that Daniel will adjust to the day program with time.

But it is incredibly sad that after 20 years I still don’t understand why my son behaves the way he does, and I am still so powerless to help him.

For three months friends have asked me how Daniel is doing, how the move has worked out.  I want so much to tell them that it’s great, it’s beautiful, a perfect fit after such a long and difficult search.  I feel almost obligated to provide a positive report to these caring people: that after all the turmoil they’ve borne witness to, our efforts finally paid off, and I can offer a happy ending in repayment for their support.  Perhaps, too, by saying it to them I can convince myself that it’s true.  But I know by now that the truth is more complicated than that.

How could I tell my friends that it’s working well, that everything is fine, when I knew the day would come when it wouldn’t be fine, that the honeymoon would be over; and the next time they ask I’ll sense their letdown, their confusion at my dispirited, uncertain answer, which may be the only true answer I can give?  Because Daniel’s insidious, baffling behaviors moved to his new home with him.

I don’t want to tell my friends that I’ve been waiting for the other shoe to drop, dreading the call or email detailing a set-back, further limiting his options, his chance to lead a productive, meaningful life.  I can’t admit my fear that perhaps we made a mistake, that maybe we didn’t pick the right place after all, even as I know our options were so limited as to make “picking” the right place practically moot.  I don’t want to confess how scared I am that he’ll never come around, never grow out of these behaviors which so restrict his potential, his future, his relationship to us and the rest of the world.

I don’t know how to tell them how unbearably sad it is to know that he is miserable when he lashes out, and I live too far away to comfort him; that this can’t possibly be what God intended for my son, and yet it is happening, it happens again and again and we don’t know why or how to stop it.

When I visit him now our outings are dictated by his unpredictability, the bleak certainty that I can no longer control this six-foot man-child, if he becomes without warning a person frightening even to me.  We are confined to drives in the safety of my Jeep, roaming the streets of a town I don’t know, a world away from all I once dreamed for him.

And how can I express, in the wake of his abhorrent behavior, that I share moments with my son that make up for it all, that remind me of who he really is, that there is more to him than the aggression, which in its enormity eclipses the loving and sensitive young man I know him to be?

Will it mean anything to those who have witnessed his rage if I recount the moments when he is joyful and laughing, rocking back and forth in his seat as we drive, windows down and air blowing clean across our faces, listening to a Red Hot Chili Peppers song again and again, volume cranked high?  Would anyone believe that he understands me when I tell him, “Here it comes, Daniel!”, that he laughs then, as the bass solo pulses through our bodies, washing away for a few blessed moments the anguish that autism, in its awful duplicity, has inflicted, and I have Daniel again, my real Daniel, my true and beautiful son?

Because that is the truth, as well.  And I hold that truth against my heart, when it is breaking.