At home with Down syndrome
May 24th, 2008
In an extended essay in the New Atlantis, Caitrin Nicol reports that children born with Down syndrome today have brighter prospects than at any other time in history, yet the abortion rate for fetuses diagnosed with Down syndrome tops ninety percent.
She traces this apparent contradiction to “inadequate” practices for delivering Down syndrome diagnoses to pregnant women, saying that current practices “fail to serve the needs of pregnant women feeling anxious, pressured, and frightened for their babies’ welfare, and they fail to do justice to the dignity and potential of persons living with a disability.”
Nicol reviews some recent books that offer a more human view of the experience of Down syndrome — five by parents, family and friends of affected individuals, and one by people with Down syndrome themselves.
She sums up by reflecting on the question posed by one proud big brother: “Wouldn’t it be wonderful if every family had a kid with Down syndrome?”
That question, of course, does not express the wish that more children would struggle with disabilities, but rather that more families might find within themselves the means to understand, and to transmit to future generations, the profound truth that every life is filled with meaning, and every child is a source of joy. The deepest consequences of that discovery, it seems, have to do not with the recognition or acceptance we might offer to those who are disabled, but with the strength, compassion, happiness, and wisdom we might gain by the discovery itself, and by our acting on it. The ruling emotion that unites all the various stories told in these books is gratitude, and the reader cannot help but be left grateful as well, for the strengths on display in these stories of children with Down syndrome and of their families are the strengths we today can least do without.
Image above from a painting by Italian Renaissance painter Andrea Mantegna, in which the figure of the Christ child is said to be modeled after a boy with Down syndrome.
Books reviewed in the article:
- Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives, edited by Kathryn Lynard Soper, Woodbine House, 2007.
- Count Us In: Growing Up with Down Syndrome, by Jason Kingsley and Mitchell Levitz, Harvest, 2007.
- Chicken Soup for the Soul: Children with Special Needs, edited by Jack Canfield et al, HCI, 2007.
- Common Threads: Celebrating Life with Down Syndrome, by Cynthia S. Kidder and Brian Skotko, Band of Angels, 2007.
- You Will Dream New Dreams: Inspiring Personal Stories by Parents of Children with Disabilities, edited by Stanley D. Klein and Kim Schive, Kensington, 2001.
- Road Map to Holland: How I Found My Way Through My Son’s First Two Years with Down Syndrome, by Jennifer Graf Groneberg, New American Library, 2008.
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