In September 1987, I experienced one of the most painful events of my life. The life I had known for the past twenty years changed abruptly. My son, Michael, moved out of my home leaving behind two decades of memories and overwhelming feelings of guilt.
I can remember packing his suitcase knowing all too well that Michael, my first born, was leaving not by his choice, but by mine. I had cared for him and loved him for over twenty years. Now these last few months at home he has developed problems that I couldn’t cope with. He became a disruption in my home and a constant worry. The tears and the heartache were almost more than I could bear, but I knew it was time for him to leave. How ironic it was that packing a suitcase for him had become such a routine part of his life and mine.
Michael entered my life on February 14, 1967. He had snapping black eyes and thick black hair, and he was the most precious baby I had ever seen. My husband and I were thrilled beyond words. On February 17, we brought our beautiful little boy home from the hospital along with the suitcase I had packed for him.
When he was an infant, I packed a diaper bag that went everywhere with him. It went with him to the store, to grandma’s, to visit friends, to church and to what soon became a multitude of never-ending trips to doctors and medical clinics. He was always such a good little guy during his many trips. When he visited the doctors and clinics, he was exceptionally good, crying very little and enduring the bombardment of relentless testing he was put through. This was a way of life for over three years. When he was four and a half years old, he was accepted into a program for autistic children at the U.C.L.A. Medical Center. My husband and I were hopeful that the doctors there would be able to find a reason for Michael’s delayed development and for his bizarre behaviors. We wanted some answers to why our son was not talking, why he would awaken in the middle of the night and giggle for hours, and why he had no communication skills and no receptive skills. Once more I found myself packing a suitcase, but this time it was a stay of several months. I cried knowing how much I would miss him.
The trip from our home to the medical center took about an hour by freeway. As I remember it, the walk from the parking lot seemed to take almost as long. We were faced with the reality of walking our tiny, trusting little boy into the huge multiple storied complex. After Michael was admitted to the medical clinic, we were escorted to a wing of this immense complex, which was called 5 West. The interior walls of 5 West were painted dingy gray. One of the nurses explained it was to help keep the children in the wing as sedate as possible; bright colors were believed to have the opposite effect. I was secretly wishing we did not have to leave him there, but we handed the nurse his little suitcase, kissed him goodbye and walked away. I can remember crying all the way home.
Michael was at the medical center for two and a half months and then he came home. We were given no explanations for his strange behaviors and no cure for his delays in development. He was diagnosed as severely mentally retarded (not autistic), and the prognosis was equally grim. I welcomed him home and unpacked his bag, as I wiped my tears away.
Several months after Mike returned home, we were notified of an opening in a private day school for the mentally retarded. When his first day of school arrived, I packed a small bag with a change of clothes for him. He was not toilet trained, and the school wanted to be prepared for whatever happened.
His new school was actually a Sunday school room in a church, which served as a classroom for the retarded, Monday through Friday. As I led him into the tiny room, I could see all the strange looking faces of the children that life had so cruelly cheated. There were seven or eight children in various stages of mental development and of widely varying ages. One child could do nothing more than an infant, but he had a very large body. His parents kept his hat on at all times to hide the fact he was born with only one ear. It was a very depressing room, a roomful of hopeless victims. I could hardly believe that my little boy with the face of an angel belonged here. It was difficult for me to believe that this was going to be Michael’s fate in life. Everything that most children and their parents take for granted had been snatched from him forever. There was no cure, no second chance; his fate was decided before he began to live.
As the years passed by, Michael changed schools eight or nine times, but he always had his little bag with his change of clothes. Eventually he was able to carry his own bag and somewhere during the passage of time he began to use the change of clothes less often.
When Michael was eleven, he went to summer camp for the first time. I can remember taking him and his suitcase to meet the camp bus. He willingly climbed the steps of the bus and sat down with the other children; all very much like him. He had no idea where he was going, but he was ready to go. The bus driver loaded his suitcase and his two sleeping bags on the bus. We watched the bus drive off to camp and we waved goodbye. He was back at home in less than a week with a bag full of dirty clothes and a tired suntanned face.
Mike went off to camp for the next nine summers. Packing for his annual camp stay became so routine that his brothers and sister could do it without any assistance from me. As much as I hate to admit it, his yearly trek to camp was something we all began to look forward to. It was a time we could relax and not be concerned whether the front door was locked (he had wandered off on more than one occasion), or if he were hungry, or if he needed his clothes changed.
In the summer of 1987, Michael had become a major concern to all of us, but mostly to me. He had suddenly stopped eating and was losing weight. Eventually he lost so much weight his health was at risk. The doctors could find no medical reason for his not eating so it was decided his condition was emotional in origin. This made me feel guilty and made it next to impossible for me to objectively deal with the situation. I kept his caseworker at Mental Health well informed of the situation and in September she found a foster home for him.
The time had come for Michael to move on and for me to let go. I went to his room and began packing his suitcase one more time. I carefully placed as many of his clothes as I could into his bag and zipped it shut. My tears were a steady flow by now. I did not go with him to his new home. I hugged him goodbye and watched as his father led him out the door with the last suitcase.
The End
The Autism Legacy
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