Pervis Jr just turned 40 and he is still handicapped by autism. This was my nightmare when he was younger. I felt that I had to help him overcome his autism. I felt that if others had succeeded with their children, that we would succeed with PJ, too. I was wrong. Some of us who received the crushing blow of the diagnosis of autism also received another crushing blow. Our child would not be one of those who would overcome their disability.
We worked at it. Teachers, therapists, his siblings and me. We all tried. We had to accept the fact that his deficits were more than we could overcome. There were many things that he could not do. There were many things that he didn’t understand and he could not operate above the level of his understanding. This was hard to accept and still is. I hope things have changed enough so that parents whose adult child is still handicapped by autism are not made to feel that they did not try hard enough or did not love their child enough to rescue him or her. We felt this pressure and this guilt.
Still, we taught him a lot. He is now pleasant and agreeable and follows directions if he understands them. He is not the person that I would have wanted him to be at age 40, but he is so much better than when he started out. Before 1975, when he was born, people with his behaviors were put in institutions. They were heavily medicated or put in restraints. If he had been born a year earlier, he would have been one of them. It was in 1975 that the federal government ordered states to discontinue putting people in large institutions. These places were little more than warehouses for people with severe behaviors or mental problems. Thank God, we were saved from that.
He taught me a lot, too. He taught me about unconditional love. He loves me no matter what I’m wearing, how my hair looks, if I have had my shower and many other things that we are so judgmental about. So I have learned to not be judgmental. He also taught me that some things can be tuned out. Everything and everyone is not worthy of all your attention. I have spent a great deal of my life trying to help my son overcome autism, so I have had to learn acceptance of what is.
The autism logo used to be a child’s face in a puzzle because it is such a puzzling disability. It is just as much a puzzle now as it was 40 years ago. Another puzzle is why the diagnosis has so greatly increased. I would never have predicted that autism would become more prevalent than less. My prediction would have been that we would have answers by now. We have more services, more therapists and more agencies that help with our people, but some of the services are so expensive that the average parent who is not rich can not take advantage of them. I have also been told that some of the services are by people who are more interested in making money than in helping our people.
I am now living in the Future that I was so afraid of. PJ still has autism, but I don’t. I feel that he did not become “cured’, but I did. I survived him and he survived me. I still love him just as much as I always did. There is a misperception that if your child does not overcome autism, they will not be loved as much as if they become “normal”.
According to society’s standards, I have now become elderly. I may be elderly, but I am not “over the hill”. I was over the hill, but I saw another hill. I feel that as long as there is autism in my life, there will always be another hill. I feel compelled to speak for my son since he can’t speak for himself. I feel compelled to try to help others who are now going through what I have been through. I remain “Inspired Ny Autism”.
I would like to leave you with a quote from one of my heroes, Dr Norman Vincent Peale. “You can’t choose your circumstances, but you can choose how you react to them. Your attitude about the facts is more important than the facts. Once your perception of an object or a situation changes, the situation changes.” I have lived this.
Until next time, May the Power of God protect you; May the love of God enfold you.
Claudreen Jackson.
Claudreen, you have an amazing way of describing what you’ve been through and how you were feeling while you were going through it all. We feel your hurt. We feel your struggles, and we feel your love! You, Pervis and PJ were all lucky to have each other! Pervis is definitely watching you, and he’s very proud of everything that you’ve done for PJ, for Autism Awareness, for yourself, and for keeping his memory alive! He looks down on us everyday too. The group’s picture is hanging above our tv. John really misses the guys! They were not just parts of a group, they were a family!
Lori,
You are so wonderful!!! Thanks for your comments. I know that you could write your own blog. I appreciate your feedback. Did you read about the Induction Ceremony. I’ll have to get the info to you so that you can get John’s award. Love you.