“How people think about events in their lives determines how they feel about them”. Aaron T Beck.
This is another way of saying the same thing that Dr. Norman Vincent Peale said, “Once your perception of an object (or situation) changes, the object itself changes”. After 37 years of living with autism , I can confirm their statements. I am now “Inspired By Autism”, but it wasn’t always that way. I used to say that PJ was my burden. Then he became my challenge. Now, he is my blessing. Being his mother has been a lifelong education for me. Because of him, I’ve learned that we are never “grown”; that all of life is a learning and growing experience.
Because of PJ I am still coming out of my “comfort zone”. In fact, once you become the parent of a child with autism, is there such a thing as a comfort zone? I am not comfortable speaking to a room full of strangers, but PJ cant talk, so I have to. I am so sorry that I don’t have any answers for autism, but I want to have my say about autism, which is why I speak and write. PJ can’t do either, so at 70+ years, I am still dealing with the challenge of autism and talking about it.
Thank God that I live in America, where I have freedom of speech. I can share my thoughts and experiences without having answers. A psychologist that I spoke with years ago told me that I might have to learn to live without answers. I am still trying to do this. Even when I get an answer, it is not the right answer for PJ.
I wonder if he could talk, what would he say? The only time you can get a conversational response from his is when you mention the word “Disneyworld”. Then he will say a few words, “Mickey Mouse, Donald Duck, ride the train, water.” He will say these words over and over until I am sorry that I mentioned it since we are not going to Disneyworld and I am not sure if he understand that.
I saw a teen-ager named Carly who is handicapped by autism. Carly was on “The Doctors” TV show this week. Carly has apraxia, which is the same condition that PJ has, so Carly doesn’t talk either. However, Carly writes. She has written a book and writes a blog called “Carly’s Voice”. Seeing her was such a revelation because there is so much more to her than meets the eye. Her father and her therapist had been working with her for years using a picture board and got so much more of a breakthrough than they were expecting.
Carly uses the computer to write and is intelligent and eloquent. She explains a lot about autistic behavior. Carly says, “Autism doesn’t define me, I define autism”. She proceeds to do just that. She explained the stims of people with autism and why they do it, but she goes even farther. She says that a lot of typical people stim, too. We tap our feet, tap our pencils, doodle, pace, etc. Since our behaviors are considered appropriate, it is not called stims when we do it. People with autism have stims that don’t look socially appropriate and that is why they get so much attention.
Carly explained being overwhelmed by her environment and how she reacts to it. (This is something that all autism parents are familiar with. This is a reason for a lot of inappropriate behavior in our children). The doctors had asked her the questions ahead of time so that she would have enough time to type the answers. On the show, she appeared to be totally autistic and the only thing that she communicated during the show was that she wanted a coke in a can. She did this by using a talking picture board.
After seeing Carly, I wonder how many more people with autism have so much more to share than they appear to. How many more people with autism could tell us how they feel as eloquently as Carly if they had the right interventions, PJ included? I try to console myself with the fact that we all did our best and that was all we could do.
Until next time; May the Love of God enfold you.