Last Updated on September 8, 2019, by eNotes Editorial. Word Count: 521
The book chronicles the first few years in the life of James, or Jamie, the younger son of author Michael Bérubé and his wife, Janet. Bérubé provides both scientific information about Down syndrome, which affects their son, and the personal dimensions of the family’s journey in understanding the condition as he grows. One of the main points that Bérubé makes in Life as We Know It is that each child is a unique individual. While others might see his son Jamie as an interchangeable member of a category, Bérubé has never done so, and he cannot completely endorse any effort in that direction. Down syndrome is one component of Jamie’s makeup, not what completely defines him.
Almost as a form of emotional exercise, I have tried, on occasion, to step back and see him as others might see him, as an instance of a category, one item on the long list of human subgroups. This is a child with Down syndrome, I say to myself. This is a child with a developmental disability. It never works: Jamie remains Jamie to me.
Although he reviews the genetic alterations that cause Down syndrome, Bérubé points out that the manifestations are widely varied. While other types of “major genetic error” have catastrophic results, that is far from always the case when it comes to Down’s. The intellectual aspects are sometimes, but far from always, the primary result. There is neither just one mold into which Down’s children are fitted nor one set of characteristics common to all children affected.
[W]hat’s odd about Down’s is how extraordinarily subtle it can be. Mental retardation is one well-known effect, and it can sometimes be severe, but . . . the extent of such retardation can be next to negligible. The real story of Down’s lies not in intelligence tests but in developmental delays across the board.
Along with the personal and scientific dimensions, the book addresses critical policy issues that have had and will continue to...
(The entire section contains 521 words.)
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