by Kristen -

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.

by Kristen -

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.

by Kristen -

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.

by Kristen -

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.