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.