Writing in  the New York Times Motherlode blog, Meera Oliva says she was devastated when she learned prenatally that the child she was carrying had a cleft lip, but her concerns disappeared as soon as her son, Elan, was born. Now that Elan is six months old and about to undergo his third surgery, Oliva says she and her husband feel their journey “has enriched our lives much more than it has taken anything away.” An excerpt:

… From the moment we saw Elan, we were absolutely in love with him, and with his cleft in particular, and suddenly all of the things to come like surgeries and arm restraints and special feeding bottles seemed much more manageable.

… I think the most shocking thing of all to both of us is how bittersweet it feels to have Elan’s lip fixed. To us, his face doesn’t need any fixing. His smile is so sweet and part of what makes it so cute is its imperfection. His cleft feels like a part of who he is, and yet if Dr. Mulliken does his job right, Elan will grow up and never feel like his cleft defines him, and I guess that’s the way it should be.

But its hard to imagine that now. Because for now we feel a little sad to be saying goodbye to this wide smile that we have loved so much these last six months. So we will make sure to enjoy it as much as we can the next few days, and then we’ll get to work on loving his new smile just as much. I’m guessing that won’t be too hard.

From Tom Brokaw, NBC News, a feature about American athlete Kevin Pearce, who was considered one of the best snowboarders bound for the Olympics until he was gravely injured in a training run. He sustained a traumatic brain injury, and is now working to regain his speech, vision and physical coordination.

Brokaw says Pearce has a “special relationship” with his brother, David, who has Down syndrome, a “kindness and patience” that the family has drawn upon during its recent crisis. Pearce’s mother says the wisdom she gained from David helped prepare her to cope with Kevin’s accident and recovery.

” I had never realized before this happened that the great gift of David in our life has been to prepare me for this experience,” she said. “And I feel way better equipped to deal with this thanks to having had David in our life for 24 years.”

UPDATE: A Facebook page honoring Kevin Pearce has garnered almost 44,000 fans as of Wednesday morning. Notes Sports Illustrated:

The site has received notes of support from fans and fellow snowboarders, but also from many survivors of traumatic brain injuries who have described the productive lives they now lead.

There’s also a Facebook page created by fans of David Pearce.

(Photo from NBC News)

‘Our leaders fail the neediest’

Columnist Rick Green, writing in the Hartford Courant, says Connecticut’s leaders have spent hundreds of thousands of dollars on a legal fight to keep the Southbury Training School open, even though they know the facility violates federal discrimination law. “We will pay dearly for this,” he writes. A legal challenge to the sprawling institution for people with intellectual disabilities is being heard in federal court.

Green describes Southbury as a “1950s-era model for segregated care of the disabled,” and a “world that I thought existed only in film documentaries.” He says former Connecticut Gov. John Rowland caved to pressure from fearful families and staff fifteen years ago in a “transparent political move” that effectively halted efforts to move institutional residents back into the community and would “infect state policies for years to come.”

Experts say there is no reason why people with complex disabilities can’t live satisfying lives in the community with appropriate support, but families and guardians need to be educated about the possibilities to allay fears. Further, they say, community-based care comes at a lesser cost: approximately $122,000 per person per year, as compared with Southbury’s pricetag of $350,000 each for some 450 residents. An excerpt:

After more than a decade of waiting, we await a solution from a federal judge.

That’s what you get when nobody leads.

See also: School for intellectually disabled under pressure to change — Hartford Courant

In a wide-ranging interview with the Wall Street Journal, Temple Grandin shares some of the insights she’s gained as “easily the most famous autistic woman in the world.” Among the nuggets:

– Parents should not stop vaccinating kids because of autism fears, although they might space out the vaccinations.

– She’s not convinced that autism’s on the increase. “You know the geeks have always been here,” she says.

– She’s seen some “very big improvements”  with special diets, but she doesn’t think there’s a “magic cure” for the disorder.

– Kids with autism need 20 to 30 hours weekly of intense, one-on-one learning time, coupled with high expectations.

– People with autistic traits make important advancements, particularly in engineering, science and technology.

From the Los Angeles Times:

California Gov. Schwarzenegger’s most recent budget proposal would close 327 adult day healthcare centers centers throughout the state, with an estimated cost savings of $135 million in fiscal 2011. The centers serve 37,000 low income participants of all ages who have disabilities and chronic conditions including brain injuries, dementia and diabetes.

Advocates estimate that closing the centers would end up costing the state more money. More than 40 percent of current participants would end up in nursing homes and others would be hospitalized, said Lydia Missaelides, executive director of the California Assn. for Adult Day Services.

Eliminating adult day healthcare services would affect family members as well as participants, operators said.

“They would have to figure out how to take care of their family members,” said Cástulo de la Rocha, chief executive of AltaMed Health Services Corp., which runs Golden Age and seven other centers in Southern California. “It would impact their jobs.”

Families are fearful. Unions promise to fight.

From the Los Angeles Times, San Gabriel Valley Tribune:

California officials this week announced plans to close one of the state’s largest institutions for people with intellectual and developmental disabilities. The Lanterman Developmental Center in Pomona houses 400 people on 302 acres, and employs more than 1,300 people. “It’s just not economical for us to continue it,” said Terri Delgadillo, director of the state Department of Developmental Services.

State officials promised to arrange for residents to get proper care in community-based settings. Family members expressed dismay, saying they feared their loved ones would not be adequately cared for if they left Lanterman.

“It’s devastating for us,” said one woman, whose brother has lived at the institution since 1969. “People like Bobby are more confined in the community. At least [at Lanterman] he can wander the grounds safely.”

The closure requires approval from the state legislature. More than 2,000 people remain in California institutions.

Related story: Toxic Rosewood raises ire, by Jennifer Bishop in the Baltimore Brew

A Maryland state senator has sent a mass email to his constituents warning them that the site of the former Rosewood Center is now considered a dangerous environmental and health hazard. The institution for people with disabilities was closed last year.

Disability advocates reacted angrily. An excerpt:

“The State’s assessment found Rosewood to be so dangerous as to recommend that no one trespass on the property,” said Cristy Marchand, executive director of the ARC of Maryland. “The real question is the response that will be made to the hundreds of children and adults with developmental disabilities whose health was threatened by toxic conditions while living for decades at Rosewood Center.”

Writer was ‘inspired by the most horrible thought she ever had,’ says New York Magazine

Emmy-winning Rachel Axler made her off-Broadway debut this week with Smudge, a dark comedy about a couple who give birth to a child with one eye, missing limbs and multiple disabilities. In an interview with New York Magazine, Axler says she wrote the play after reading about disability rights advocate Harriet McBryde Johnson, a lawyer and wheelchair user who publicly debated with philosopher Peter Singer about his view that parents of disabled infants should have the legal right to kill their children at birth.

The play gets its name from the word the parents use to describe an ultrasound photograph of their daughter.

Excerpts from the reviews:

Joe Dziemianowicz in the New York Daily News gives the play three stars.

“If awards were given for creating procreation anxiety, Smudge would be a shoo-in …

“… The condition of the never-seen baby divides Nick and Colby. He hovers, consumed by ‘Cassio’ even at work as a census taker. ‘Living is binary,” he says. ‘Zero or one. Black or white. You’ve got two choices — alive or dead. This is my daughter. She’s the gray area. Which would you choose? Zero or one?’ …

“… Axler’s a sharp writer, but one wishes that she came up with a resolution as gutsy as the rest of the play. Instead, Smudge goes out with a whimper.”

Rachel Saltz in the New York Times, under the headline “And one-eyed offspring makes three“:

“Parenthood never looked weirder or more terrifying than it does in Smudge, a new play by Rachel Axler at the Julia Miles Theater. Here are some of the things that Colby, a new mother, calls the thing she gave birth to: it, creature, hot dog, freak, smudge, a bunch of entrails in casing …

“What gives the play its charge is how Ms. Axler taps into a primal fear — giving birth to a monster — and then calmly considers it from all angles. She has a lightness of touch, especially in the scenes with Colby, that makes the dark undertow all the more affecting.”

Elisabeth Vincentelli in the New York Post gives the play two and a half stars. The headline: “Baby, you’re the beast”

“When it comes to fully reaping what she sowed, Axler falls short, as if cowed by the topics she’s brought up. Mental illness, the expectations placed on mothers, the very issue of what makes someone human are no small topics, but here they’re brushed off almost as soon as they’re raised.

“Not for nothing is the baby named Cassandra. Although it alludes to Greek tragedy, Smudge contents itself with dramedy.”

Jennifer Farrar in the Canadian Press:

“Overcome with bitterness, sarcasm and cheesecake binges, Colby initially ignores the baby. She cuts the sleeves and legs off all the pink and white onesies, saying, ‘It doesn’t have limbs, it doesn’t need sleeves,’ and secretly uses the fabric to make a stuffed toy she calls ‘Mister Limbs.’ When she finally approaches the pram, she waves Mister Limbs and seemingly taunts Cassie with it, saying, ‘He has everything you don’t.’

” … Together, these parents need to discover whether they can accept the child they produced and learn to love her just the way she is. Ultimately, Smudge is also about the complicated nature of love, what it means to truly become a parent and the resilience of the human spirit.”