. As the subtitle suggests, Charles Hart provides details regarding his life growing up with an autistic brother and, later, raising a child with autism. Not only does Hart provide an historical perspective of the changing attitudes about and treatments for autism over several decades but he also provides insight into his own understanding of autism as a younger brother of a severely autistic man as well as the father of a son who is autistic. Not only have I found the book to be informative and insightful, Hart's frankness and honesty is reassuring and comforting. Although my children are higher functioning in some regards than his brother and son, I can relate to many feelings and situations he describes and Hart provides a perspective that I find quite interesting and thought provoking. I don't typically dog ear books but, looking at the book now, I see that I may need to consider having a highlighter handy while reading it. Unexpectedly, Hart's book is helping me cope with my own feelings about raising two children with autism as well as raising a typical child. One thing that I have struggled with since my boys were diagnosed is allowing myself to process the difficult emotions. When I feel grief creeping up on me, I try to redirect my thoughts. When I feel envy of others whose children are typical, I find myself avoiding their company. When I want to simply cry because my children seem so much more vulnerable and misunderstood, I swallow it because it is too much to bear. When I'm sad for my typical son whose life is so affected by his brothers, I suck it up and give him more and more hugs. For some reason, Hart's book has broken down some of my defenses and allowed my emotions to break through. As we sat at McDonald's tonight celebrating Mother's Day (because that's one of the few places we can take our kids to eat), my husband and I laughed at how empty McDonald's was. Apparently, McDs isn't the Mother's Day hot spot.
I was secretly glad that it was rather empty, though, as my sweet, oldest son jumped around and cornered the few children who were there. Repeating the same script each time, he approached them and said, "Hi. I'm (name). What's your name?" Sounds perfectly civil but to young children, his proximity to them, his mannerisms and his almost aggressive presentation baffled them. Some would answer but wander off. I appreciated those children far more than the ones (I am thinking of a girl in particular) who simply looked at him then turned their head as if he wasn't worth talking to.
My sweet son who wants friends but does not have the social understanding to make them continued to make efforts and even believed that he was making friends. I can be thankful for his not understanding how the children were responding to him. In some ways, I hope he doesn't lose that because I would hate for him to feel rejected. Unfortunately, he needs to understand people in order to make friends so, in order for him to improve, he will have to experience this pain that I already feel so acutely for him.
As I watched my son, I found myself choked up. I love all my children. Each is so special to me. Right now, though, my oldest seems the most vulnerable and "different" so, although I don't love him more than my other darlings, I can't help but want to shelter him, protect him and force others to see his beauty. I know the world may not welcome him as I think he should be but I'm pretty damned determined to do my best to help him.
As I reflect on his disability (which I'm coming to grips with each day), I can't help but think of his amazing abilities. He sees the world in a way that I can't fathom. Although he experiences deep sadness and anxiety, he also experiences love and beauty in a way that I could only hope to experience myself. I often am amazed and baffled by the things he says. Sometimes, he'll say things that I can't understand at all. Other times, I am just in awe. My Mom sent me an email he had sent her today and, as odd and somewhat nonsensical as it is, I found it to be poetic and beautiful. Here is my son's email:
"hi.today i went outside and the cloud evaporated me, and rained me, i went right thru a transformers book and landed at sari's house."This was written by my 6 year old without my knowledge, influence or assistance and I find it very moving. After reading it, I found myself repeating the phrase "the cloud evaporated me, and rained me" and found it to be so beautiful. In a way, I feel that my son has evaporated me and rained me by changing me so drastically since his birth and, although, it has been difficult, he has released parts of me which I hope will help nourish he and his brothers and to influence the larger community to better understand and accept all these beautiful souls.
I think one of the saddest misconceptions about people with autism is the idea that most of them don't care about being social. This is simply not true. And I know what you mean when you wonder how the neuro typical sibs are affected. I wonder when my daughter is going to start to really comprehend that her brother is different. But she's pretty insightful and sometimes I wonder if she doesn't get it already.
ReplyDeleteI love the things that children say.
Is McDonalds an acceptable place for a chid with autism to experience a meltdown? I'll have to tell you some time about the heaps of judgment I received when my son had a meltdown at the local McDonalds. I suppose we could have left, but I was trying to give him every opportunity to turn things around because I had been promising his NT sister all day and I didn't think it was fair for her to have to go home. Anyway, maybe you'll have to tell me which McDs you frequent. LOL.
N. Is both poetic and creative in his wording as always (even when angry). That boy never ceases to amaze me.
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