The reason I jump…

HigashidajonstewartSo at some points I can imagine a suicide note entitled ” the reason I jumped” but that is not the title of this post. The Reason I Jump is a book from the author David Mitchell and I just finished reading it yesterday. The book is a translation of thoughts, answered questions, and short stories from a 13 year old Japanese boy with autism, Naoki Higashida. David translated it into English; he too has a son with autism. I first learned of this book from The Daily Show. Jon Stewart had David Mitchell on the show as a guest and I was riveted by the topic, of course, and Jon Stewart’s sincere enthusiasm about the book. Like most suggested books on the subject of autism, I had to have it asap. Unlike most books about autism, hearing from someone with autism is always the most meaningful. I always want to learn more about what is in Bryan’s head or how better to work with him, communicate with him and to connect with him. What I learned from this book was both joyful and sorrowful. The joy, the blessing, is to learn that my boy, if he is at all like the boy in the book, is experiencing all of the typical feelings a 13 year old boy should have. Perhaps just that the boy is the same age as Bryan struck a chord with me. The sorrowful, well, it seems that logic and autism are diametrically opposed with respect to parenting. Some of the things I do (don’t like to use we here since Earl and I often approach Bryan in different ways and I’m not going to throw him under the bus I’m going under) may seem to make him more anxious, more upset and more self-conscious. Naoki shares that when he repeats or calls out or exhibits behavior that is not typical he does not mean to do this; he needs more and more patience to show him that we are on the same side. He says “please do not give up on us”. Wow, that’s like taking a dagger straight to the heart. Ever since I have finished the book I have been emotional. You see, I read these things to learn, but I don’t always learn. I try to listen to every word Naoki says, and although there are differences with each child with autism, I try to implement changes. Old habits die hard. This morning Bryan was yelling and yelling for no reason. He was bored, he was looking for my attention while I was putting away laundry, he was just showing his autism. I yelled back, not even really at him, but almost like a cry out. Only the two of us were home. Immediately I felt like a piece of crap and apologized to him over and over. Naoki’s voice was in my head…patience, patience, patience. One of the most fascinating things about this book is that once Naoki really gets something, he writes a story to illustrate it’s meaning. These stories are so sophisticated and simple at the same time.
Yesterday Bryan had Football Buddies and today Running Buddies. If you read my blog you will know this is a local program where a typical 10+ age kid is paired with a special needs kid to participate in the named sport. Both days Bryan was compliant. I say compliant because I am truly unsure if he enjoys this in any way. As I watched him both yesterday and this afternoon, I kept thinking about Naoki wondering what he would say about these forced sports events. I kept thinking about whether or not we are doing a good thing or a bad thing to have him do the sports? I want to scoop him up and run as fast as we can to a deserted island. He can let his autism hang out and we don’t have to worry about school or sports or anything. We don’t have to think about stares from people in Target, or learning how to live in a society that doesn’t get us. It’s a fleeting feeling that comes every now and then. I think it comes when I realize that part of the angst of parenting a child with autism comes from the push and pull of forcing them into our rules when their brains tell them otherwise. I am fascinated by other parents too. I want to ask them, don’t you ever just think we’re getting this wrong? Shouldn’t we start a new community? Shouldn’t we let them be? Ugh, ugh, ugh. I realize after reading Naoki’s thoughts that my focus must be more on reaching out to the emotional Bryan. It is not ok to only interact on a surface level. I need to let him know that he is a young man and that although he does not tell me certain things, I know them to be true. He works so hard to learn, to try, to grow. I need to do the same. He gave me a really sweaty kiss at Running Buddies. I live for those sweet kisses!!

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