NRL News

A child with Down Syndrome and the education of her father

by | Oct 24, 2016

By Dave Andrusko

Editor’s note. October is Down Syndrome Awareness Month. We are posting new and previously run stories as a way of helping to raise awareness.

shapeoftheeyeNo doubt because two of my daughters work with kids with developmental needs, I am especially receptive to books about the challenges but also the rewards of rearing a child with what are commonly called “special needs.”

Skimming the site, I ran across a delightful interview with George Estreich who has written a book about his daughter, Laura, titled, “The Shape of the Eye.”

Since you can read this terrific interview at our leisure, let me offer just a few highlights to encourage you to read Jessica Ryen Doyle’s story and perhaps buy the book.

We learn it the beginning that Estreich started documenting his life with Laura in 2001, when she was 3 ½ months old, shortly after she had undergone heart surgery. (He had a head start in writing a moving narrative because he is a college writing professor and former poet.)

He neither pretends there were no challenges nor over-magnifies them to the point where Laura is reduced to a bundle of conditions. Estreich and his wife Theresa did not know of the diagnosis of Down syndrome until Laura was 2-weeks-old.

They already had a daughter Ellie (now 17) and their “pretty good life” changed with the diagnosis. “Things were difficult at first,” Estreich admitted to Doyle.

Laura had typical problems—“a congenital heart defect, which was ultimately fixed during surgery, and a feeding disorder that required her to be fed through a tube in her nose about six months.” Doyle tells us that Estreich researched everything he could find and discovered the normal developmental delays and that one in every 691 babies born in the U.S. have Down syndrome, or approximately 400,000 Americans.

“The Estreichs, who now live in Corvallis, Ore., opted not to do any prenatal screening during Theresa’s pregnancy; they figured it was pointless since false-positive rates are so high, and they didn’t want to have an amniocentesis, which can increase the chance of a miscarriage,” Doyle writes. “Theresa insisted no matter what a test discovered, she wouldn’t have terminated the pregnancy anyway.”

If I write any more, it will take away from your enjoyment of Doyle’s fine article. But for those who don’t make it to, here’s the last incredibly thoughtful paragraph:

“I’d like people to think about who belongs in our society, and the obstacles to belonging,” Estreich said. “And (the book is) not just about (Laura) developing and getting through her medical troubles – but about my development as a parent.”

Categories: Down Syndrome