My Side of the Journey – Part 2

I was pretty much in denial in the weeks and months that followed my son’s diagnosis. My wife did what needed to be done while I escaped into work and flying. I was so out of it that I’m not even sure how most of what happened came about. My wife gave notice and quit her job, arranged for experimental in-home tutoring, got speech therapy, and began herself to become a pocket expert on the subject of Autism.

I actually got hopeful at this point. My wife was coordinating an in-home behavior modification and training program called Lovaas Therapy. At the time this seemed to be the best approach to training my son. Their position is that if you can get the autistic indiviual to “act” normal then for all intents and purposes they are normal. This was what we always referred to as the “R” word or recovered. What I know now is that it was basically operant conditioning which if you remember from your Psych intro classes is basically stimulus/response training. More or less it’s the same way you train a dog. Knowing what I know now I cannot honestly say I would have done anything differently.
There was a steady stream of college students coming and going in my home. These kids were telling me how to reinforce what they had been teaching my son. It was a major nuisance but I held on to the hope that they might actually succed and that my son would recover. As the years went on it seemed he would make some minor advances and then regress. It was such difficult work for my wife. She had to deal with his behaviors all day, her only respite was when my son was in his learning room with the tutors.

Some of the behaviors he exhibted were head-banging, scratching himself or others, hitting, throwing whatever he could get hold of, screaming, crying. It is still heart-wrenching for me to watch some of the video tapes we made of the learning excercises when he was younger. The tutors spoke to him in emotionless monotones, asking him to perform a task or say a word. If he succeeded, the tutors would praise him or reward him with candy or a favorite toy. If he didn’t succeed all he got was an emotionless, monotone “No.” If he did cry or bang his head there was no effort to find out why, they would just place him back in his seat over and over until he finally gave up. Part of this was bending his will, part of it was just lack of emotion. The tutors genuinely cared for him, at least one is still involved in his life, and several of them still inquire as to how he is doing. However, I wish we could have found a more loving approach for teaching him.

Finally we were able to start him in school. First in some special day classes but soon he was advanced enough to attend a learning handicaped class with a tutor. This went on for a year but he never seemed to learn much from the class. However, he learned quite a bit from the other children. He learned some fairly foul curse words. He didn’t understand what the words meant, he only knew he got a reaction from others when he used them. He learned certain foul hand gestures. The longer he was in school, the more aggressive his behavior became. I talked to him, punished him, even threatened him with living in a group home. For a while the behaviors would subside but then they would always come back.

My wife became fearful of my son during this time. She dreaded his summer vacations because he would be home all day with her. She needed respite and wasn’t receiving any. My commute generally took me about two and a half hours to get home and by the time I got there I didn’t want to deal with anything. My wife sought out help from a pastor at a church she had been attending but he couldn’t offer any suggestions. Neither could the psychiatrist she saw once or twice. She began attending church during this time. She was a lost soul in the crowd crying from beginning to end of the service. But no one ever said a word to her. I was certainly doing nothing to help. Also, our daughter was born around this time. Our baby girl was a delight and was generally no trouble but this put my wife under even more strain.

Somewhere along the line she talked me into attending church with her. I wasn’t really against church, we met in church. It was just easier not to put my son in Sunday School. But he had finally reached a point where he could attend Sunday School and my wife and I started going to church again. Still I was obstinate and unchanged. Then one day my sister called and said her husband would be going to a Promise Keepers event in a near by town and asked if I would go with him. I’d never been and there were some guys from my church that were going. I thought it would be a good way to make some friends at church. Besides, it would get me out of the house for a while. We went to there on a Friday evening and an event occurred that changed my life.

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