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.

Competing in Olympics, Paralympics with ten percent of his vision

From the Seattle Times, MacLean’s magazine and elsewhere:

Canadian skier Brian McKeever is the first winter-sport athlete ever named to compete in both the Olympic and Paralympic teams. Like his father, McKeever has Stargardt’s disease, the most common form of inherited juvenile macular degeneration. An excerpt:

“There’s not a day goes by that I don’t wish that I saw better,” McKeever, 30, said, talking to a small group of reporters earlier this week. “And yet, it’s made me who I am. It’s a part of who I am and I like the person I am. If that’s the case, then this can’t be all bad. But I certainly wouldn’t wish it on anybody else.”

“… I looked at my dad, who has the same disease, and saw how it never stopped him. I realized it didn’t have to be a limiting factor and it’s best just to get on living life. To be honest with you, I don’t think this has taken much away from me.”

(Photo from Maclean’s)

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.

In an essay that’s in the most-viewed spot at the [Toronto] Globe and Mail’s website, Edmonton mom Sue Robins says she felt as though she’d been slapped when a fellow preschool mom asked her why she didn’t get prenatal testing. Robins’ son, Aaron, has Down syndrome. After escaping to her car, Robins burst into tears. An excerpt:

Why do I have to justify my son’s very existence? Why isn’t it okay that he’s alive? What are you afraid of?

For those of us who have children whose extra chromosomes could have been detected prenatally, it is a long and lonely road. We get asked these questions. We get frantic calls from friends who are considering amniocentesis because their triple-screen prenatal test has come back elevated. The whole genetic testing thing is fraught for parents who have kids with disabilities.

One day it won’t just be “us.” With the clever mapping of genes, there may be tests for all the lovely imperfections of life that make us human. All in the quest for the blue-ribbon baby.

What I should have asked the mom in the playground was, “What if your daughter was in a car accident tomorrow and had a brain injury? Would you love her any less?”

When you can answer those questions, I will answer your questions.

In the Life and Style section of the [UK] Guardian, a lengthy first-person account of a couple who chose abortion after prenatal tests brought a diagnosis of Down syndrome. Nick Hinton reports that the decision gradually tore his family apart. An excerpt:

I spent a lot of time wondering where it had gone so horribly wrong. Was the decision to terminate the pregnancy to blame? Not in itself, though I worried that my insistence on its being Fiona’s decision was something of a cop-out. Perhaps I should have offered myself as more of a sounding-board or even a punch-bag. Fiona never reproached me with a lack of support, or even hinted at it. But that dreadful period undoubtedly opened up a crack between us, a crack that later deepened into a rift that could not be healed.

By correspondent Karen Meyer at WLS-TV, Chicago (ABC affiliate):

“Life My Way,” a state-funded program in Illinois, is collecting the personal stories of hundreds of people with developmental disabilities. Among them is Bridget Brown, a 23-year-old woman who works as an intern in the pediatric dental clinic at the University of Illinois-Chicago. Brown has Down syndrome.

“We really want to provide a medium to empower people to make their voice heard and to have their voice heard, because quite often this community has not had the opportunity for their stories to get up and be heard,” said Brooke Anderson, the program’s organizer.

… “My message for Life My Way is to let people know that I do not suffer from Down syndrome, but I think it’s important for people to hear their thoughts and dreams through Life My Way because they all have something to say,” said Bridget.

Writing in the Chicago Tribune, Parade Magazine publisher Randolph Siegel lists a few examples of the ways in which people with cognitive impairments are ridiculed in the national media. Here’s just one: A leading character on HBO’s “Curb Your Enthusiasm seduces a character with an intellectual disability, then belittles his victim when she speaks out. “I cringe when I see snark like this,” Siegel says. An excerpt:

Call me overly sensitive. Accuse me of being humorless. Say whatever you want. But if the true measure of a society is how it treats its most vulnerable citizens, then these mean-spirited attacks are not only indefensible, they reinforce the intolerance and discrimination that these children and adults often face in their schools, communities or workplaces. I had never met a “retard” until my daughter was labeled one after untreatable epilepsy ravaged her cognitive development.

… Over the years, I’ve bit my tongue whenever I hear “retard jokes” at business functions — or see a movie like DreamWorks’ “Tropic Thunder” in which “retards” are vulgarly disparaged in a lame effort to generate laughs — or hear a song like the Black Eyed Peas hit single “Let’s Get Retarded.” Even when President Barack Obama described his subpar bowling skills by making an insensitive joke about the Special Olympics on “The Tonight Show with Jay Leno”, I tried to internalize the pain. But that’s a losing strategy and no longer justifiable.

As Americans with intellectual disabilities are increasingly stigmatized and dehumanized in our media and popular culture, it’s time — now more than ever — for their families and friends to help them fight back.

Earlier post: Daughter with epilepsy needs more than hugs — ‘My Turn’ column by Randy Siegel in Newsweek

See also: Our seizure nightmare, by Randolph Siegel in the Chicago Tribune

(Photo from website of Citizens United for Research in Epilepsy)