A sense of loss beyond description
Excerpt from ‘Saving my Sons: A Journey with Autism’, by Ilana Gerschlowitz, with Marion Scher
Published by Bookstorm and available at Loot.co.za (R220)
THE DIAGNOSIS
IN February 2004, when David was about 20 months old, we visited a developmental specialist. We had to wait two agonising, soul-stealing months before we secured an appointment with her. When I close my eyes and cast my memory back to that fateful day, I can still see her sitting behind her large desk as she delivered the diagnosis that destroyed the more or less normal path we thought we were taking. The outcome of this visit turned into a surreal nightmare from which there was no escape. What she gave us was not merely a diagnosis, it was more like a death sentence. In a perfectly calm, matter-of-fact voice, she uttered this dreadful news and advice: “He will never speak, go to school, be toilet-trained, have friends, get married, or hold down a job. Take out an insurance policy and see a psychologist. ”I hear you’re pregnant,“she added casually. ”I don’t know what to tell you. I guess you can go for genetic testing. No guarantees, unfortunately.“Her parting words to us? ”Goodbye and good luck.“She turned and left for another appointment. We finally had our diagnosis, delivered in cold and brutal language. Before she spoke those fateful words, we had still had hope that everything would turn out right. Before the gavel strikes and the words leave the judge’s lips, the sentence is neither legal nor official. But now the developmental specialist’s gavel had struck, the words had left her mouth, and the sentence had been pronounced. ”Autism!“All our hope dissipated into dust.
As hope deserted us, the vacuum it left behind drew in fear and sadness … great sadness, and a sense of loss beyond description. My idyllic dream of a happy family was shattered. At that moment, I wanted to die – with no thought of my husband, child or unborn child.
I had always wanted a small gap between my kids as it would be nice for them to be close in age while growing up. It was all ruined. As the developmental specialist dismissed us, it felt as if she’d delivered a life sentence and we left her office reeling in shock.
There was no social worker, family member, parent or professional working in autism spectrum disorder (ASD) present to wipe my tears, hold my hand or offer words of wisdom; and there had certainly not been any mention of treatment options. And how did I deal with this devastating news knowing that inside me I was carrying my next child? My beloved David had vanished into himself … a place where I couldn’t reach him. My nice, “normal” world collapsed. Mourning the “death” of my firstborn, and believing I’d never be able to have a normal relationship with him, I was plunged into severe sorrow and defeat. I lay wounded on the floor, sobbing for hours on end, crying oceans of tears, mourning what felt like a living death. The vacuum of autism. When someone you love dies, the date and time of death are recorded and everyone expects you to go through a period of mourning.
You have a memory of the event and think intensely about the loved one you lost. Losing our connection with David, however, was and for a long time remained a loss that could not be quantified. There wasn’t the usual support offered by our Jewish community in the event of a death – no prayer groups, meals being dropped off, or people offering encouragement. It was just Martin and I and our baby, who looked like David but wasn’t David anymore.