6 months ago



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Free ebooks ==> Heather 25 needed to be nurtured, not eliminated. At first, Janice was concerned that Heather would not fit in, would be different from the other kids at school and so end up isolated and rejected by them. Now she was learning that Heather saw things in a way that was of value to everyone. The patterns in the rug were beautiful when the light shone through the window. The bark was lovely as one moved around the tree. The diagnosis was not a defeat, a punishment for being a failure as a parent, but a different developmental pathway to be followed. Janice could now accept Heather’s behavior without being resigned to it. Heather once lost a front tooth and wanted her mother to pour water into her mouth to help the new tooth grow! She had a wonderful appreciation for how things develop. Janice learned a new appreciation for her daughter’s developmental differences—without that acute sense of loss and mourning—by imagining Heather’s inner world. That was something her daughter could not do for her mother in return, by the very nature of the disorder. So it had been up to Janice. All living things (teeth and children included) need nurturance and sustenance. Her reward was nothing less than positive changes in Heather, in herself, and in their relationship. The long journey taken by Janice from that initial sense of disquiet that something is wrong to a new perspective on the world is a journey taken, in one form or another, by all parents of children with ASD. This book describes some of these journeys and is meant to be read in the space between hearing that one’s son or daughter has ASD and beginning a treatment program. It is a dark space, full of shadows and uncertainty. Like Bluebeard’s castle, parents fear that danger and disappointment lurk behind every door. Each possibility for the future may look more grim than the last, and perhaps the greatest fear is that one’s child has been snatched away, kidnapped by some mysterious biological process. Into this space, this book is meant to find a place. Hopefully, these pages will open a window to let air and light into that dark room. The thread that ties these stories together is that the sense of exile from one’s child that parents feel is the result of not understanding ASD and how it affects the experience of childhood. The gaping hole that opens up at one’s feet when hearing the diagnosis and seeing one’s child on the other side of that hole is something that all parents feel when they first learn about autism. The emotional distance comes from the impairments in social reciprocity and in social communication that are a key part of the disorder. From this basic fault line flow the other difficulties—the restricted and odd play, the difficulties in learning, and the

26 A MIND APART challenging behaviors. And from this comes the distance between parent and child. As adults, it is our job to traverse that distance by entering the inner world of the child with an ASD. We cannot expect them to enter our world first, because that is the fundamental nature of the disability. Once we cross over, a transformation is possible—a transformation of the child, of the parents, and of all those who come in contact with somebody like Heather. I can never look at the bark on a tree or a bathing suit the same way as I did before I met Heather. She moves all who stop and take the time to say hello to her along the road to confronting, then challenging, then celebrating diversity.

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