Being the parent of a son with autism has been the ultimate challenge of my life. Most other challenges pale in comparison. Since it is such a long lasting, never ending challenge, I have been taught patience and endurance, but I have not learned to be content with unanswered questions.
I would like to know more about how adults with autism are living. How many have jobs? How many have been able to hold onto jobs once they get hired? I’ve heard stories about the unsuccessful attempts. I want to know about the successes.
How many adults with autism are able to live independently in their own homes? What about all the children with autism who were mainstreamed? Did it help them to be able to be more independent? PJ has made a great deal of progress, but he is not able to live or work independently.
I have recently been attending parent support group meetings for parents of children who attend some of the Detroit Public Schools special education centers. We all have questions. There is a mixture of disabilities so not all the questions are the same but we all have to learn to live with unanswered questions.
We live in a society that wants people to “fit in”. Our children do not fit in. I remember when the fit in problem was so important in my life that I spent three years keeping PJ at home and out of the public eye. We always got a lot of unwanted attention whenever I took him anywhere. Has that changed? Are our children more acceptable to the public?
When I was keeping PJ at home, I had decided that I would parent him by myself. I spent all my time being enveloped in autism and trying to teach him. I felt that if anyone else had taught their autistic child, I could teach mine. I felt isolated and alone and realized that the situation was more than I could handle by myself.
With our children, it really does take a village. I finally realized that I needed the help and support of professionals and other parents. They became my Heroes. At least, most of them. Back in the 1980s there were some professionals who had very little respect for parents. When we made a suggestion, it was often dismissed. We were made to feel that we were incapable of being a part of our child’s treatment team. Has that changed? Are professionals more accepting of parents’ input?
I had professionals talk to me about “manipulation at home”. I was basically feeling incompetent and they helped me to feel this way. One of the goals that parents back then wanted to accomplish was to get more respect from professionals and to be considered as a team member when treatments for our children were being discussed. I hope that that goal was accomplished.
I learned that whatever our child’s disability, we parents had a lot in common. We had love, commitment and dedication to our children. We all had to learn tolerance and compassion. We all had fears for our child’s future. I had to learn that I couldn’t let fear of the future spoil the present moment.
I am old enough to have a different perspective. Many of the hopes that I had for my son did not materialize. I had to accept the fact that my hopes for his future were not going to come true. I am now living in the “future” that I was so afraid of. PJ has matured and mellowed far beyond what I would have expected. He still has autism, but he has overcome so much that I am very proud of him. I did not think that I could say that unless he was “recovered” from autism.
He seems to want instructions now. When he was younger, he was resistant to learning and would get upset when he was told what to do. Will this continue? Will he continue to be more co-operative, agreeable and open to instruction? Will he ever communicate in a social situation? Will I ever quit asking questions?
Until next time; May you have Peace, Love and Prosperity in your life.