Dr. Turner served as my family’s doctor. He was a general practitioner who also functioned as obstetrician and pediatrician. He worked out of a small brick office with his only other staff member, a nurse who also handled reception and bookkeeping. The office was beside a shoe repair shop run by a cute old man named Stanley.
To make this evocation of the past even more quaint, I offer two details. First, Dr. Turner made house calls. When I, along with my two siblings and mother, came down with chicken pox, Dr. Turner headed out to our house rather than make my poor father schlep us all into town. Second, Dr. Turner accepted cash as well as goods for payment. We paid most of our medical bills out of pocket. Along with cash, my dad showed up every spring at Dr. Turner’s garden with a truckload of manure from our farm. They called it even.
The mid-70s. An era when you could still pay your doctor with manure. I thought of Dr. Turner a few days ago when I received a bill related to Martin’s recent emergency room visit. In mid-May, we followed our (former) neurologist’s advice and tried to ween Martin off a drug he takes for impulse control. Our neurologist wanted us to focus on behavioral interventions rather than rely on medications, as well as foreclose on the possibility of negative side effects from the meds. We followed his advice and disaster ensued. Martin became uncontrollable. He screamed. He hit. He kicked. Most incredibly, he ate leaves off the neighborhood sycamore trees.
A few days into our experiment off meds, Martin experienced an extreme tantrum. I thought he might break the door I locked between him and me. I took him to the emergency room, explained the situation, and asked for a psych consult.
What’s funny about emergency rooms is that the staff interact with you as if you are not in the midst of an emergency. At least three different staff people slowly took us into different rooms. Martin’s blood pressure was taken at least three times. As Martin became increasingly agitated, a sage nurse looked at him and said, “Martin, you’re not allowed to hit anyone.” As if simple commands worked in this situation. My husband and I tried to keep Martin calm as myriad staff members came into the room, repeating questions and examinations. There was no doctor in sight. We asked for wifi access so that Martin could watch a movie that might soothe him on our phone. Somehow, the wifi was impossible to access. A clueless nurse offered us a DVD player with some random movie. “I don’t think you understand autism,” I told her.
Things got a lot worse before they got better. Martin started hitting and kicking again, which promoted the charge nurse to call the hospital police. Now, Martin faced men in uniform who were there to hold him down if he continued to act out. Finally, a doctor arrived into this messy situation. The doctor called for a neurology consult. It took forever. Finally, the doctor advised a dissolving sedative to calm Martin down. It took six of us, including the three hospital police, to hold Martin down and get the tablet on his tongue. Martin was terrified. I was mortified. Trauma all around.
We saw at least a dozen healthcare professionals (as well some security professionals) during that visit. The ER doctor was never able to contact our neurologist to ask about his recommendation to go off the meds. There was no coordination between the two, despite the fact that their offices are about 100 yards apart. Of course, these medical professionals have no contact with Martin’s teachers and the educational professionals who create his alternative learning plans. And these folks have no contact with the behavior therapist and horse therapy people we also work with. I recently had an appointment with a county office that offers a sort of case manager service for kids with autism. It costs $250 a month. They don’t accept insurance.
I miss Dr. Turner and his nurse and the shoe repair man next door. Dr. Turner delivered me when I was born and I attended his funeral. I miss the attention he gave his patients. I miss my doctor who knew my story. At the same time, I know that Martin would not have fared well in the 1970s. A child who showed his lack of capacity to speak would have been recommended for institutionalization. I would have been blamed for being a “refrigerator mother.”
So I ought to be (and basically am) quite grateful for the therapies and services available to us. Martin didn’t learn to talk the way most of us do, but he did once he experienced alternative methods. Our healthcare and educational bureaucracies make this possible. Martin has a chance to flourish because of these expanded bureaucracies.
But no one loves a bureaucracy. We usually distrust them and feel slighted by them. When we see a charge of $2095 for an ER visit marked by lots of trauma and one lousy pill, we feel robbed. A friend of mine is writing a book on the lure of small things in American history. I thought of his work when I got the bill and thought of Dr. Turner’s truckload of manure. I long for the small and simple even as I benefit in substantial ways from the large and complex.
Maybe a truckload of manure can take on new meaning in our new situation? Perhaps I have a delivery to make to the ER?