Favorite excerpts from "There's A Boy In Here" by Judy Barron and Sean Barron.
This book explained how Sean (who is autistic), could not help his behavior and how everything he did had meaning to him. All members of the family went through great learning experiences and so many emotions. It wasn't easy.
I was so pleased when Judy, Sean's mom, reminded him that learning can happen anytime. I also thought it was great that Sean realized he could simply enjoy reading and not feel a need to compare how much he reads with his family members.
Since I do believe there is some connection between the measles vaccine and autism, I was mad and dumbfounded at that mom who allowed people into her home (especially a pregnant woman!) when she knew her child had measles. Wtf? I was almost wanting to blame that lady for Sean's problems. But then what if Judy had opted to not get the vaccine while she was pregnant? Would Judy have gotten the measles? How would that have affected Sean? I could come up with several what if scenarios. Though I didn't like the seemingly cold and objective opinion of Dr. Rossi, it is true I guess...they had to deal with what they had going on no matter what caused it. But...maybe if they had a understood why and how it happened, if anything they could have done differently would have helped or not, or if they could help others prevent it from happening to their children, that would have helped them to feel better. Maybe not change their situation, but help them to understand it and move forward with what was.
The book uses two font's, one italicized for when Sean is sharing his perspective or what he remembers and one in regular font for when Judy (the mom) is sharing her perspective and memories.
Below, I used Times Roman font Judy's writing and Ariel font for Sean's.
Page 65 - I told him about an incident when I was three months pregnant. One of Ron's students had invited us to dinner at her parent' home. When we arrived we met her little brother, a three-year-old. the little boy had climbed into my lap; he seemed groggy and listless. "He's sick," his mother explained when she'd put him to bed. "He's got the measles." The measles! This woman knew I was pregnant and she let her child climb all over me? I asked my doctor about it the next day. "Better take a shot for German measles," he said, "just to be on the safe side." I did, and the shot made me sick for several days, with a fever and a vaguely upset stomach. My doctor assured me that the shot would have no ill effect on the fetus.
"Could that have been the cause?" I asked Rossi.
Again he shrugged. "It doesn't really matter, does it?" he said. "Whatever it was or wasn't, you have to find a way of dealing with it now. Putting a name to it makes no difference."
"Yes it does!" I wanted to shout, as I watched him in silence. I wanted him to tell me that my child had been damaged by a vaccine, that I was blameless in all this.
I had a child I was embarrassed to take places, a child who looked perfectly normal but whom behaved in a way I'd never seen before, doing things that humiliated me and made me feel like a total failure as a mother. There was the same question n everyone's eyes - family, friends, strangers - that silently asked, "Why do you allow your child to act like this?"
Page 90 - Most streets just kept going on forever, but I loved the dead-ends because they made me feel safe. Every time we approached one my anticipation would skyrocket. Then what happened? Our car would pass right by! My parents would refuse to turn into the street. I hated that and I got so angry and resentful! It infuriated me when all I wanted was to see the end of a street and they wouldn't let me. All I asked was that they take me up the street, and they wouldn't even do it! I felt deprived of something I really loved; besides, I had to rely once again on someone else to take me, someone else in control. At least if I wanted to throw my play phone into a tree, I could toss it up there on my own! The car was not in my control, so once again Sean Baron could not get what he wanted! I felt tremendous inadequacy and that made me very, very angry.
This was the message I got: They won't take me up this street because they think that something I love is somehow wrong. It didn't take me long to feel that there really was something wrong with me. After all, what harm could it do to drive up a dead-end street? Since I wasn't trying to hurt anybody, why the hell did I have to be hurt? So I formed the perception that I was a bad person and that I had no power. We might pass five dead-ends in a row, and I wouldn't get to go down one of them! Then the next one would be a through street, and inevitably that would be the one my parents chose. I got furious!
So the next time we drove past those same streets I would turn my head to look down each dead-end, but when we came to the through street I would only look straight ahead or in the opposite direction, pretending that the street did not exist! In this way I showed that I had power over the street as well as over the people in the car. Id' think, "They can make me go down this street, but they can't make me see it or accept it as real."
Page 227 - 278 - In the second semester I chose to take a class called "Coping." It was about problems teenagers had, and it turned out to be one of the wisest choices of my life. The teacher was a compassionate woman who was overtly affectionate with her students. She was as comfortable discussing birth control as my English teacher was with nouns and verbs. I felt at ease n her presence, and no one was judged, no matter what they said. She had a positive effect on the students, and they were extremely supportive with one another.
We discussed a wide range of topics, and one day the subject of autism came up. She described the symptoms and behavior of the disease; it was as if she were talking about me, as if somehow she knew what went on inside my head and was telling the class about it without using my name! Was she using me as a model? I said nothing, but I sat at my desk feeling as if I had been turned inside out for everyone to look at. What the hell was going on?!
I told nobody about my bizarre experience in class. But three days later I had another experience, and this on e changed my life.
A friend phoned to tell me that there was a movie on television called "Son Rise," a true story about an autistic child and his family. "You should watch it," she said, "and maybe Sean should too."
Ron and I had told Sean that he was autistic when he was ten years old - we explained as simply as we could that it was something he couldn't help, that it caused him to do the things he did. He paid no attention whatever, then or any of the other times since, though we continued to explain that his behavior was in control of him. It was a confusing message, though, because that very behavior was what we were constantly asking him to control.
Page 232 - 233 - I went on a crusade. I took a look at myself in a way I had never done before, and this is what I saw: I had problems, real ones, big ones. But that didn't mean that there was something fundamentally wrong with me, that I was unlike everybody else in the world. I knew that I was separate from the problems I had and that I could overcome them. I declared war! I was going to fight against all the behaviors I had obeyed all my life. Since playing cards were a major temptation to me, I threw away all my decks of cards and told my mother what I was doing and why. Dead-end streets and bus numbers still went round and round in my head, and I pushed them out - I made myself think other thoughts instead.
I began to separate things. I made a list of the things I was terrified of and figured out how to conquer my fears. I had believed for so long that I was abnormal, retarded, inferior; now I realized I didn't feel that way anymore. It was very hard to make the changes I knew I had to maek, and I got furious with myself whenever I saw that I had fallen short of my goals.
When I started coming alive, I had a deep desire to do something to help other people. My "Coping" teacher suggested that I volunteer as an aide at a neighborhood nursing home, and I did just that. I loved those patients. I read their mail to them, took them to various activities, and spent a lot of time talking and listening to them. They responded to me and really liked me. I was frightened at first of what the patients would think of me, but after a few days I knew I had done the right thing, and it made me feel wonderful.
Page 252 - Noticeably absent from this conversation were elements that had dominated the way Mom and I had talked to each other all my life. I didn't blow what she said out of proportion, nor did I use every weapon in my arsenal to defend my actions. This time I simply admitted my poor judgment, and I was a little humbled in the process. Mom explained that there was nothing wrong with me for being ignorant of certain social graces, that these were things I didn't know simply because I hadn't learned them. "People learn all their lives. Sean, if they're interested and really alive; there's no time limit."
Page 254 - I love my life here in Ohio. I live in a town I know well, a place where I'm comfortable, and every day there's a reminder of how much I've changed from that tortured little boy I was. I know quite well that my autism will always be part of me, that it isn't something I can expect to be "cured." I will always have to fight against old behaviors that taunt me, and I still struggle to convince myself that I am, like everyone else, allowed to make mistakes - and that when I do there is no neon sign blinking over my head with the words: Moron! Weird! Retard!
Page 255 "I'm slipping backwards, aren't I? I'm letting my past grab on and hold me!"
"No, Sean, that's impossible. You're a different person now than you were then. you've proven you can control those impulses you used to have." She reached out and took my hand. "You couldn't behave that way anymore even if you wanted to. Once a chicken is out of the egg, you know, he an't go back in!"
I think the most difficult aspect of my autism in recent years was having to admit to myself how much I had to learn. I actually experienced two sets of formative years - the first as a small child and the second in the years following my "breakthrough." I had so much pent-up anger inside that once it started coming out, it was hard to handle. Why couldn't I just be normal since I'd already come this far? I wanted everything to just fall into place. Why did everything have to be such a struggle? I often became incensed at what I saw as an "upside-down pyramid"; I had the ability to accomplish something nearly impossible, like overcoming autism, but I failed at the simplest things- not knowing correct table manners, not knowing how to put on clothes that looked right together. But little by little I began to accept the person I am. Like a recovering alcoholic who can't have alcohol in the house, I don't own a deck of cards because I still find the temptation to "play buses" too great. I am on guard against old habits that lure me into old behaviors. The road to acceptance has been bumpy and arduous, but I have come to realize my own limitations. I see myself today as an optimist, a productive member of the world rather than a victim of it. I feel I am a fulfilled and whole person, not a collection of uncontrollable impulses, and I am happier than I have ever been in my life.
Last December I said to Mom, "Could I have some books for Christmas?" Before that I had always thought: Why bother trying to read when everyone else in my family has read thousands of books and I'll never catch up even if I read twenty-four hours a day for the rest of my life! Suddenly I'd realized I didn't have to catch up, that I didn't have to compare my accomplishments to theirs. I saw that I was only denying myself education and pleasure. Since then I read all the time and love discussing books with my mother. Recently she gave me a copy of Tobias Wolff's memoir, This Boy's Life, and it was a revelation - the author had grown up isolated and misunderstood, filled with the same raging anger and attraction for violence that I'd felt. I was autistic and he wasn't, but his feelings were so very much like mine.
When I think of my confused, tumultuous childhood, I wonder how we ever got through it. I look at the four of us today, a closer family than any other I know. Obviously, this would not have been possible if Mom and Dad had accepted the diagnosis of doom that was given to them years ago. Instead, my parents gave me the greatest gift I could ever receive - they stuck by me and never gave up on me. Also, I never gave up on myself.