From the [Columbia] Missourian, an extended feature on the Basi family: Kate and husband Christian, and kids Alex, 3, and Julianna, 15 months. Kate describes the family as “a mutual adoration society.” Julianna has Down syndrome.

Taking care of two young children can be demanding — the smiles and celebrations often contrast with headaches and frustrations. When one of those children has Down syndrome, which causes developmental delays, the day-to-day challenges of raising a family can be tougher.

… [Kate Basi] feels the push-pull of having a child with a disability: It’s not what she dreamed for her family, but if she could take away Julianna’s Down syndrome, she wouldn’t — because then Julianna would be a different person. Basi said Julianna is perfect the way she is.

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In an extended essay in the [UK] Daily Mail, BBC writer Heidi Thomas tells the story of her beloved younger brother David, who had Down syndrome. She says he was repeatedly failed by the medical establishment, both during his life and again after his death.

David needed surgery for a heart problem, but was forced to spend eight years on a waiting list before the surgery could be performed. By that time, his heart was weakened too badly for him to survive. He died in 1985.

Then, in 2001, Thomas learned that doctors had removed David’s heart from his body and put it on display in a museum without informing or seeking the consent of his family. She writes that the revelation was devastating, and says David continues to be a part of her life all these years after he died.

It is because he is gone and we cannot bring him back, not for a day, not for a single hour. And yet, even as I weep, I refuse to say I miss him because he is with me everywhere I go.

If I am patient, it is because of him. If I don’t judge people by appearance, it is because of him. If I have a mordant sense of humour, if I love a daft joke or a singing dog, if I shout at people who abuse disabled car parks, it is not because I was born like that, it is because I became David’s sister, and loving him shaped me in a way loss can’t erase.

From the New York Times:

In a cruel coincidence that scientists do not yet fully understand, research has shown that people with Down syndrome, a chromosomal abnormality, have a much higher incidence of Alzheimer’s disease at an early age. Some studies have said that 60 to 75 percent of people over age 60 with Down syndrome will have Alzheimer’s, though Dr. Ira Lott, who is in charge of the Down syndrome program at the School of Medicine at the University of California, Irvine, said those studies have been limited in scope.

So as advances in health care have extended the average life expectancy of people with Down syndrome to more than 50 years today from 25 in 1983, doctors and family members are now struggling to cope with a double dose of disability.

Scientists hope research on the link between Alzheimer’s and Down syndrome may lead to knowledge that could help prevent Alzheimer’s in the general population.

Extended feature by Sally Sara includes interviews with Gerry Thomas and his sister Beth (above).

See earlier post: Researcher Mobley offers hope to people with Down syndrome

In the ’50s, disabled children often disappeared into state institutions. Now, one family seeks its lost son.

Richard West, in blue shirt, is reunited with family. Brother Jeff is third from left; parents Tom and Betty are at right.

By Clare Ansberry in the Wall Street Journal, an extended feature on a couple who re-established contact with their son almost 50 years after committing him to a state institution at the recommendation of their family doctor.

Richard West, then 3 and diagnosed as an “idiot,” was housed in an institution far from his Oregon home and then relocated. Parents Tom and Betty West were not told where he was being sent, and state officials turned down their subsequent requests for information on grounds of privacy.

Four decades went by before his brother Jeff found Richard again, living in a group home. The search was inspired and assisted by Jeff Daly, whose search for his sister was chronicled in the documentary “Where’s Molly.” The family went to visit Richard and found him to be healthy and content, with a job and a girlfriend.

The Wests belong to a generation of parents who decades ago relinquished their disabled children, usually at the urging of physicians or other authorities. From the 1930s into the 1960s, tens of thousands of these children entered state facilities, which offered services that local communities lacked. Many never saw their families again.

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Broadcaster’s older sister, who had developmental disabilities, was ‘most significant person’ in her life (At left, Jackie with parents Lou and Dena in a photo from the late 1940s)

From the San Francisco Chronicle, an extended interview keyed to the release of Walter’s memoir “Audition.” Walters discloses in the book that her relationship with her older sister Jacqueline was difficult. As a child, she says, she was jealous of the attention her sister received. Here’s the portion of the interview in which Walters discusses Jackie:

“I had wanted originally for [the book] to just be my childhood,” she says, dressed in a beige pantsuit and dove-gray heels. “I was going to call the book ‘Sister,’ because I thought that my childhood was unusual and poignant and because I thought that my sister, who would today be called intellectually impaired and then was called mentally retarded, was the most significant person in my life.”

… Walters is the first to admit her feelings about her sister were not always saintlike. “Because she was isolated, I was isolated,” she says. “I didn’t bring friends home and I didn’t have birthday parties and I didn’t join the Girl Scouts and it was my parents trying to protect her, although they certainly loved me. And I felt love for her but also pity, and there were times when I hated her and felt terribly guilty.

“I think anyone who has any member of their family who is disabled will feel that: You love them, you feel guilty, you feel torn. And she was my responsibility in many ways until she died.”

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Writing in National Public Radio’s “This I Believe” series, Donald Rosenstein explains how his family has adapted and grown, thanks to his son Koby’s diagnosis of autism.

That Koby has autism is old news at this point. We’ve grieved, survived and adapted. We’ve learned to be more patient, to celebrate more modest victories, and to connect with Koby whenever and however we can. Now, when Koby flaps, I’m happy for him and what it means about his engagement, not sickened by what it might mean for his and our futures.

… I believe that “reframing a problem” can help to overcome it. But adaptation is not the same as becoming tolerant of or inured to something. Adaptation allows for creative possibilities. Koby has adapted to us and we to him, and through this process our family has discovered deep and meaningful connections with each other — connections we never thought possible.

Dr. Donald Rosenstein is the clinical director of the National Institute of Mental Health, specializing in psychiatric care of the medically ill.

Earlier post here.

From ESPN2, on Youtube:

Adam Ragan is a member of his brother David’s NASCAR racing crew. Says David: “He overcomes whatever obstacles are thrown at him in his life, so I think it makes us do a little better job at what we’re doing.”