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Archive for the ‘personal stories’ Category

‘Would you abort a baby with Down syndrome?’

Wednesday, October 28th, 2009

Interviews with two women in the [UK] Daily Mail:

Julia Langdon, photo from [UK] Daily MailPolitical journalist Julia Langdon, 63, opted for an abortion after receiving a prenatal diagnosis of Down Syndrome 25 years ago. She says the decision left her “sorrowful,” but was “the right thing to do.” An excerpt:

For me, the decision – and it was mine and mine alone – was not about the rights and wrongs of abortion. It wasn’t about whether the child would have been loved, as she would have been.

… nor was it about whether I could cope, because somehow or other I would have managed.

It was only about not wishing to bring a disabled child into the world, a child whose life would be more difficult. I was given the choice. I made it. I do not regret it.

Shelley and Sam Thoupos, photo from [UK] Daily MailShelley Thoupos, 29, and her husband received a prenatal diagnosis, considered abortion and decided against it. Their son Sam, 4, has Down syndrome. An excerpt:

We didn’t know then what we know now — that Down’s syndrome children can go on to lead happy, fulfilling, successful lives. They can live independently and, above all, be a treasured part of a family, not a burden.

… OK, I’ve had to adjust the aspirations I might have had for him, but what I hope for him now is every bit as valid. He’s as wonderful a son as any mother could wish for.

Books: Music critic finds relief in Asperger’s diagnosis

Saturday, October 17th, 2009

Parallel Play: Growing Up with Undiagnosed Asperger'sFrom “Fresh Air” on National Public Radio:

Music critic Tim Page didn’t find out that he had Asperger’s syndrome until he was 45, three years after winning the Pulitzer Prize. He writes in his new memoir, “Parallel Play: Life As An Outsider,” that the diagnosis helped him to accept parts of his nature that were “not very changeable.”

Page says he acted out when he was young and constantly struggled to understand social norms. He found a refuge in the repeating patterns in music.

“I have this theory that Asperger’s syndrome has been hugely important for me with music, because it was the first world that made any sense to me. I didn’t really understand what was going on around me, I didn’t understand what people really wanted me to do. I was a very lost little kid. But my mom had this record player ….

“It allowed me passage into a world where everything made sense and where I felt this profound sense of being at home in the world.”

Related posts here.

Mom, daughter challenge conventional thinking about parenting

Tuesday, October 6th, 2009

Single mom with intellectual disability is raising daughter

‘A lot of my friends don’t have a mom who is always there for them the way my mom is for me. I’m so lucky.’

From People magazine (on newsstands) and NBC Philadelphia:

Bonnie Brown, a Pennsylvania single mother with a developmental disability, is raising her 12-year-old daughter with the help of a team of support staff. Together, Brown and daughter Myra demonstrate a new face of parenting: adults with intellectual disabilities who are raising children on their own.

‘Parents come in all shapes and sizes,” says Sandra Azar, a psychology professor and parenting expert at Penn State. “The truth is adults with ID can parent.”

The 2005 U.S. census found 132,200 people with intellectual disabilities caring for children in their homes, although experts believe the real number is much higher.

Coaches collaborate, allow touchdown by player with DS

Friday, September 18th, 2009

Matt Ziesel, photo from Kansas City StarFrom the Kansas City Star (with video):

Freshman football player Matt Ziesel, who has Down syndrome, ran in a touchdown in the last seconds of a Benton High School game in St. Joseph, Missouri, this week.

His team was down 46-0 with 10 seconds left on the clock when coach Dan McCamy asked the opposing coach for a favor: forfeit a shutout and give running back Ziesel the opportunity to make a touchdown. McCamy asked the players to avoid physical contact with Ziesel but to make it as real as possible for him.

“It’s just amazing how one play can mean so much to one kid and then to a team and then to a community,” McCamy said

… “It was just a good thing to see people realize that the value of winning is not (as) important as it is to participate and enjoy the game,” said Mike Ziesel (Matt’s dad, a longtime high school coach and the athletic director at Benton).

Commenters to the Star’s website debated whether it was ethical to allow Zeisel a touchdown that he hadn’t “earned”.

(Kansas City Star photo)

Texas couple cherishes short life of son with Trisomy 13

Friday, September 18th, 2009

From the Dallas Morning News, a series about a Texas couple who found out prenatally that their son had Trisomy 13. With the help of a pediatric hospice nurse and a supportive community, T.K. and Deidrea Laux experienced the birth and short life of their son, Thomas.

They shared their story in hopes of helping other families facing infant loss, as well as to encourage wider support for perinatal and pediatric hospice services.

Part 1: Expecting Thomas

Part 2: ‘Look at him, he’s beautiful’

Video: Choosing Thomas

How we reported this series

Editorial: Better because of Thomas. An excerpt:

The Lauxes lived through what writer Sheldon Vanauken calls “a severe mercy” – a torturous experience that, because of the way they and those who love them responded to it, revealed a deeper truth – and reason to hope. Hope is not optimism; hope is the conviction that come what may, our suffering is not in vain. The Lauxes have shown us all how to suffer in love and through the power of love, and that immeasurable good can come from crisis if we are brave enough to let it.

Said Deidrea: “We are better because Thomas existed.” We all are. The work of love was gloriously displayed in that little boy’s brief life, and the darkness of pain and death did not overcome it.

Newspaper faces controversy over ‘depressing’ amputee story

Tuesday, September 15th, 2009

Washington Post Magazine killed piece after publisher Weymouth said advertisers ‘wanted happier stories’

By Howard Kurtz in the Washington Post:

A freelance article about a quadruple amputee was killed by the Washington Post Magazine after the newspaper’s publisher, Katharine Weymouth, said advertisers “wanted happier stories, not ‘depressing’ ones,” the piece’s author wrote in an online posting.

Marcus Brauchli, the Post’s executive editor, said the sequence of events was “an unfortunate coincidence, ” but denied that Weymouth directed editors to spike the piece by journalist Matt Mendelsohn. The article chronicled a year in the life of Lindsay Ess, a Richmond resident who lost her arms and legs after a routine surgery led to sepsis.

A Post Magazine editor encouraged Mendelsohn to pursue the story after reviewing his photos of Ess. But the atmosphere apparently soured after Weymouth told Mendelsohn at a birthday brunch in her honor that this was not the sort of piece that she favored for the magazine. Weymouth has been telling editors that there have been too many stories similar to the one last November about a 13-year-old dwarf undergoing surgery to lengthen her legs.

In the sports photography blog interview, Mendelsohn said, without naming Weymouth or The Post : “To label Lindsay’s life ‘depressing,’ especially as if she needs to make some advertiser comfortable, is, well, depressing in its own right.”


Columnist weighs autism, vaccines

Monday, September 14th, 2009

Caryn Sullivan, from carynsullivanscribe.comUnproven fears of an autism-vaccine link are leading parents to make risky decisions that could endanger the lives of their children, Caryn Sullivan writes in the St. Paul, MN, Pioneer Press. An excerpt:

The decision to ignore vaccine schedules has far-reaching and dangerous implications. By delaying or forgoing vaccines, parents must be prepared to live with the outcome if their unvaccinated child dies a painful, but preventable, death from meningitis or tetanus, or causes another to become seriously ill or die.

It is time to push past the fear to rationality. Certainly, financial hardship, stress, and exhaustion are autism’s unwelcome companions. However, what does it say about our society that trepidation about an autism diagnosis drives a decision to delay or forgo life-saving vaccinations, imperiling our children? To make that decision, one would have to believe that living with autism is a fate worse than death. I passionately disagree.

Sullivan is a writer and the mother of a son with autism spectrum disorder.

(Photo from carynsullivanscribe.com)

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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