Andrew Solomon writes that one of the tricks of good parenting is this: "We must love our children for themselves and not for the best of ourselves in them." And that, he admits, is a great deal harder to do. In fact, he wryly points out this irony - that it seems all children are proud of how different they are from their parents, and all parents are sad about how different their children are from them.
But this gentle irony takes on much greater import when parents deal with "exceptional" children, children who don't look or act or think anything like their parents. Should the parents' job, first and foremost, be to "cure" their child, to make him or her as close to normal as possible, or should they instead concentrate on accepting and accommodating their child just the way he or she is.
"If you have a condition that actually can be cured, it's worth considering curing it. If you have a condition that can't be cured, it's really worth trying to accept it," says Solomon. "The problem is that many, many conditions fall somewhere in the middle. They can sometimes be cured. They can be partially cured. They can be cured but the cure can be incredibly traumatic. Trying to decide which of those to cure and which of those to accept is the real challenge."
Solomon examines this dilemma most especially in the contexts of being deaf and being a dwarf. In both cases, what initially is considered an illness eventually becomes, for the individuals involved, an identity. The deaf don't define themselves by their lack of hearing but rather by their active participation through sign language in deaf culture. Did you know, by the way, the sign language is the fifth most taught language on college campuses?
A cochlear implant presents some risks but can "approximate" hearing for the deaf and allows for some development of oral language. Would you install the implant if your child was born deaf? One of a myriad questions you'd have to consider is whether your child would be better off as a person with second-rate hearing or as a first-rate sign-language user? And would your answer be any different if you yourself were deaf? Solomon points out that deaf children of deaf parents tend to be happier and better adjusted than deaf children of hearing parents.
A similar crisis affects the dwarf community as well. Parents of dwarfs have the option of submitting their children to a painful limb-lengthening process that eventually can add as many as 13 inches to one's height, enough to make a difference in the real world. But then again, many dwarfs live full rich happy lives in which their condition seems little more than an inconvenience. And as with the deaf, dwarf children of dwarf parents tend to be happier than dwarf children of average size people.
Solomon knows what he would do in the case of a dwarf child but he's hesitant to judge.
"I've said to you that I would probably get cochlear implants for my child if my child were deaf. And I would probably not get limb lengthening for my child if my child were a dwarf," says Solomon. "I think it's a somewhat barbaric procedure. It involves years of being in wheelchairs. It's unbelievably painful. It can cause neurological damage."
"Part of the argument of the book though is that while that's where I come down, other people will come down elsewhere and it's all constantly changing so now I wouldn't actually try to make my dwarf child taller, but if I'd lived in 1950 in a more conformist America, maybe I would have. It might be that if the deaf cultural movement manages to get even more strength and power than it has that if I were faced with that choice 10 years from now I would decide I was not going to get a cochlear implant for my child," says Solomon.
"I want to look at how these things are fluid and how they shift back and forth."
Solomon says his book is not meant to push parents in any particular direction vis-a-vis the ten categories of "exceptional" children he studies. His goal is rather to provide us with as much information as possible about what life is like for parents and children in the most trying of circumstances.