Emma – This morning
Yesterday’s post inspired more thought. I have often asked myself why?
Why did I believe all those specialists, doctors and “Autism experts,” particularly as I have always been so wary of authority figures? Why didn’t I question the specialists, why did I engage in a war for so long? Why wasn’t I one of the parents who saw through the autism = tragedy model? I have always been somewhat of a rebel, what happened to that rebellious streak?
The answer begins with my father.
My father had a horse back riding accident when I was nine years old. He was just shy of his 50th birthday. It was a Wednesday. I was home sick with the flu. For years afterward I blamed myself for his accident. If I had put up a bigger fuss, maybe he wouldn’t have left. If only I’d been sicker he would have stayed home with me. If only I had begged him to read another chapter from the incomprehensible book he’d been reading to me, if only, if only… But that wasn’t what happened. He left. He did not come back as promised.
The next few weeks are a blur of images and sensations. Sounds of my mother crying behind her bedroom door. My grandmother arriving in a dramatic swirl of lavender and rose perfume and silk, her hair perfectly brushed, the grey curls delicately framing her beautiful features, her gnarled, arthritic, fingers turning the pages to one of my school books as she helped me with my homework. The afternoon I yelled, “I hate you” to my mother who dropped the rolls of toilet paper she was carrying to the floor. Her receding figure disappearing behind the door to her bedroom, their bedroom, now half empty. The rolls of toilet paper, partially unfurled, lay in disarray at my feet. My fury, shame, and horror, tangled and confused, waiting for an acknowledgment I was incapable of giving, instead I stormed into my bedroom and kicked the drawers of my bureau, leaving the mess on the floor in the hallway for someone else to pick up. My feelings, I learned much later, were not as easily left behind.
Visits to the hospital. Doctors in white coats, clipboards, a red light next to my father’s bed, the beeping emanating from a monitor overhead, his life reduced to one thin jagged line on a screen. The needles inserted into his veins, pumping clear liquid contained in bags held by poles and hooks into his damaged, broken body. The nurse who crackled as she moved, her shoes squeaked as she approached. The smell. That horrible, unmistakable, antiseptic smell that burned my nostrils and pulled at my stomach, making me worry I might vomit. The emotionless, grave, tones used by the doctors, carefully offering opinions as though they were a given, as though fact. The statements, each a warning, a flag being hoisted up the mast of hopelessness – ”He may not make it.” ”He may be paralyzed for the rest of his life.” ”He will never walk again.” Each pronouncement proven wrong. Each learned statement shown up for what it really was, nothing more than a thought.
My father confounded them all. He, alone, it seemed to me at the time, had risen up from the dead, shown them their stupidity. He was underestimated time and time again. For decades, through sheer force of will, determination and hard work, he showed the medical profession, and me, what was possible. And yet, even my father eventually succumbed to a wheelchair the final decade of his life. I saw first hand the prejudices, the attitudes of people who came into contact with him. And while his was also a disability, it was of a very different kind from autism. He and by extension, I, never “accepted” it. His neurology was unaffected as his legs gave out. He needed support, yet proudly refused help. When he died, “his” doctor refused to come to the house, saying my father was no longer under his care because he hadn’t been to see him in so many years. We were forced to call 911. My father had no respect for the medical profession. He had proven them wrong. His life was a testament to that. He believed in self reliance. He believed in himself.
When we were given Emma’s diagnosis, without thinking, I knew what I had to do. I, too, would confound all the naysayers, those who said, nothing could be done. Those who grimly wrote evaluations, itemizing my daughters deficits with matter of fact, clinical words. Her vibrant personality reduced to a critique, her intelligence, not applicable, not even a number as she was deemed impossible to test. I would show them, just as my father had. It was the beginning. I didn’t know it at the time. I didn’t realize I had chosen the wrong road to go down. I didn’t see that my initial, knee jerk reaction to her diagnosis was correct after all. The word “autism” wasn’t what was wrong. It was the information and interpretation of what that word meant that was wrong. If you’d told me this at the time, I would have responded in rage. I would have told you, you were wrong. I would have told you I could save her from the diagnosis, when what I needed to do was save her from the misperceptions surrounding the diagnosis.