The Book: What About the Boy?
In our early thirties, my wife Judy and I became parents of a developmentally disabled child. Much time passed before anyone began to grasp the nature and scope of his affliction, but we insisted that help for him, in some form, had to be available.
I kept a journal from Day One, initially to record the wonder of childbirth and parenthood, and then, as the clouds of doubt and fear gathered, to make sense of the new direction events were taking. When we found a path that offered hope, I continued to trace our steps along it. Over time, my notes, musings, and efforts to learn evolved into this book, What About the Boy? A Father’s Pledge to His Disabled Son.
The story includes details of what we did, and why, primarily to illustrate the lengths to which many families go in pursuit of help for their beloved children. I also wanted to show how, for such parents, the prospect of improvement can undermine the credentials of any professional who fails to see it.
My purpose here is to depict the reality of parenting a developmentally disabled child, as it is experienced every day by thousands of families the world over. Even now, more than two decades after Joseph’s birth, I frequently encounter new parents who express dismay at the pediatrician’s lack of concern for obvious developmental issues or who are contemplating a course of action like the one Judy and I took. My hope is that defining this situation will enable us as a society to address it more effectively.
Some will argue that a pursuit of cures, or better treatments, is wrong. The thinking is that we should instead celebrate neurological diversity. Just because a child is different, they say, attempting to change him, or to shoehorn him into the world that the rest of us inhabit, would be an assault on his core identity. I concede that disability affects some individuals in ways that make them unique—eccentric, perhaps, but nevertheless entirely capable of enjoying life on their own terms. I believe such people exist and do not presume to say that they should be changed. It’s just that I’m not sure I’ve ever met anyone like that. Here’s what I do know: If a baby is in constant pain, as mine was, he needs help. If an older child cannot tell the adults around him when he has a headache or a sore throat or a toothache, or when he finds daily life confusing, his life is less satisfying than it should be. I maintain that every child deserves to have options. When an immobile child sees other kids running, or when any child is excluded from classrooms because of an inability to participate, no one has any business assuming that he is happy with his lot.
Judy and I knew that Joseph needed help. We believed he also wanted help. We endeavored to provide it.