From the Providence Journal/Boston Globe:

Monthly gatherings called ‘Sibshops’ combine information, education and recreational activities to help siblings of children with autism confront their fears and feel less alone.

At the Autism Resource Center in West Boylston, Mass., a dozen siblings aged 9 to 15 shared their worries by writing them on white paper, crumpling them up and pelting them around the room. One by one, they picked up the “snowballs” and read the messages aloud.

Adult helpers offered reassurance.

They assured the youngsters that service providers will be there to help their autistic brothers or sisters with housing, employment and health-care needs when they are adults. They emphasized that employers and the general public are more understanding about autism than they once were. They stressed that a job and a handful of friends could make all the difference.

… Some youngsters looked relieved; others appeared unconvinced.

In People magazine, a cover story in which Sarah Palin says she was “devastated and shocked” to receive a prenatal diagnosis of Down syndrome at 13 weeks. She said she hid her pregnancy from the public and from her children.

“Not knowing in my own heart if I was going to be ready to embrace a child with special needs,” she reveals, “I couldn’t talk about it.”

The account quotes 14-year-old daughter Willow, upon meeting Trig, as saying that he “looks like he has Down syndrome.” It says Willow challenged her mother’s decision not to reveal the diagnosis.

Palin admitted she didn’t know how to break the news. “I was a little shocked,” says Willow “but I don’t care – he’s my brother and I love him.”

(Note: Full article is available on newstands, not on the Internet.)

Columnist Christine Schweickert, writing in The State [Columbia, S.C.], says her experience with her older brother Tony has taught her that “retard” is a word that offends her just as much as the “n-word” offends people of color. An excerpt:

if only the rest of society would abandon its unintentional cruelty and quit calling one another “retards.”

Rail against “political correctness” all you want.

All I know is that my brother Tony has never stolen anything, cheated, or told a lie. Never been deliberately cruel. Never intentionally hurt another person.

I think Tony – and those like him – deserves respect for that …

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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