kheru2006 (kheru2006) wrote,

What’s it like having a child with Down syndrome?

A father writes about his own imperfect reaction to having a child with Down syndrome, as well as humanity’s often awful treatment of people with disabilities.

Paul Austin’s daughter, Sarah, is thoughtful and helpful, though she goes about it her own way.

He recalls an awful day, years ago, when he went for an angry walk after getting in a fight with his brother over the phone. Paul had a broken arm, his wife, Sally, was out of town, and there were people working on the house.“I walked up and down the block about five or six times, and when I came up the porch, Sarah was on that swing,” the Durham author and ER doctor recalls with a smile. “And she goes, ‘No problems here, dad!’.”

Lesson from a dad ......

Sarah has Down syndrome, and Paul’s book is an unflinching look at
his own parenting experience.

Another time, Paul came home from work and told a nine- or 10-year-old Sarah he’d had a terrible day. “Not me, dad!” she declared, and slapped him on the arm. Both times, it was exactly what he needed to hear.

Be Inspired logoSarah is now in her early 20s and living in a group home in Chapel Hill. Her dad’s second book, Beautiful Eyes: A Father Transformed, was published recently by Norton.

Sarah has Down syndrome, and Paul’s book is an unflinching look at his own parenting experience.

In the book, he’s not reluctant to admit his faults and failures. Over 278 pages, Paul documents the rocky path from the shocked new dad he was in 1987 – one who couldn’t see through his daughter’s Down syndrome diagnosis – to the parent he is in 2014, who simply sees a daughter, no qualifier needed.

“We are pretty transparent about our initial reactions, and my reaction took years to get past,” Paul says.

Sally, sitting across the family’s airy living room, nods. “I’m a psychiatric nurse and believe strongly in putting things on the table,” she says. “Mental health has been hidden, and mental illness has been hidden for so long in our society.”

In the same way that other parents’ honest feedback was helpful when Sarah was born, Sally feels Paul’s book can help families in similar situations feel less isolated.

Sally and Paul had an agreement: He could write anything he wanted, and she could come back through with a red pen and cut out anything she wanted. But she removed nothing: “I think the more you hide, the less service that is for other people,” she says.

Paul admits he’s nervous that some in the disabilities community may take offence at his blunt honesty, but his most important reader, Sarah, has already OK’d the book.

“She had some problems with the book... and she felt free and able to verbalise the problems she had with it and what she disagreed with,” Paul says. “In terms of meeting that standard, I’m straight.”

Paul doesn’t just delve into his own imperfect reaction to having a child with Down syndrome, but humanity’s often awful treatment of people with disabilities right up through recent history.

With a University of North Carolina history professor guiding his reading, he discovered that ancient Babylonians read birth defects as omens, while Greeks and Romans simply sacrificed these children to their gods.

There was the United States’ eugenics movement, and the Holocaust; Paul travelled to Austria and stood by the Danube, where a monument marks the spot where Nazis unceremoniously dumped the cremated remains of people with disabilities into the water.

And then there’s Peter Singer, a modern philosopher and Princeton instructor whose opinion that parents of disabled children should be allowed to euthanize their kids continues to alarm and offend Paul.

“It was history I didn’t quite believe,” he says.

It’s bleak stuff, one possible reason Sarah declared an early draft of the book “too sad”. Shortly after, an editor at Norton echoed that.

Sarah wanted it to be a happier book. And now that it’s finished, she wonders if it’ll become a movie. After all, Sarah loves movies and musicals – she knows them inside out, and has dreams of screenwriting and acting.

One day, when she was talking to her dad about who would play whom in a “Beautiful Eyes” film, she said she wanted to play herself. Paul said he wasn’t sure it would become a movie.

“Is it because I have Down syndrome?” Sarah asked. No, Paul said, it would have nothing to do with that, but her question stung. Shortly after, they went out to dinner and Sarah said, “It’s hard, Dad.”

“What?” Paul said.

“Having Down syndrome.”

As he recounts the story, Paul covers his face with his hand: “I think it’s so easy for us to know the version of Sarah we know. It is easy for us to fail to register what carrying that means,” he says. “When she said, ‘It’s hard, Dad’ – I’ll bet it is.”

Yet he and Sally are proud that she has the confidence and self-awareness to express both her struggles and her dreams. And recently at the Regulator Bookshop in Durham, Sarah sat beside her father and signed his latest book.

It may not be a movie role, but she was still its star. – The News & Observer/McClatchy-Tribune Information Services


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