From the Today Show, with video:

Ginny and Matt Mooney learned before birth that their son Eliot would be born with a rare genetic syndrome called Trisomy 18.  Doctors told them that if their son lived through childbirth, he would probably not survive more than a few weeks. They decided to document and celebrate their son’s short life, producing a powerful video that has garnered millions of views on Youtube.

Eliot lived 99 days; at his funeral, friends and family released one balloon for each day he lived.

The Mooneys have since had a daughter, Hazel. They say they cherish the time they spent with their son, and that his life has changed them for the better.

More info on Trisomy 18 at the Trisomy 18 Foundation.

Linda H. Davis writes in the Washington Post that a tidal wave of autistic children entering adulthood over the next 15 years threatens to swamp social service networks. By 2023, she says, it’ll cost $27 billion annually to take care of them all.

Yet the challenges of adult autism are overlooked, she says, as we continue to focus on whether vaccines cause autism, the need for a cure, and how best to educate children with autism. All we get from the White House, Davis says, is a “worryingly broad, detail-free promise.”

An excerpt:

… In 15 years, the cost of care just for the autistic children entering adulthood over that time will be about equal to the current state budget of Tennessee. Meanwhile, services are dangerously strained, and the influx of autistic adults is underway. This country urgently needs to focus on adult autism, new models of care and new sources of funding. Before the looming tidal wave delivers another crushing blow to our economy, we should have a national discussion. It should begin today.

Linda H. Davis is the mother of a 22-year-old son with autism and the author of “Charles Addams: A Cartoonist’s Life.”

From the Waco [Texas] Tribune-Herald:

Jacque Beavers, the mother of a woman who lives at the Mexia State School, opposes the closing of the state’s institutions and says her daughter would have no place to go if the facility were closed.

An excerpt:

Julie has lived at Mexia State School since 1976. Someone must diaper, bathe, dress, feed, and care for her every need.

Julie must be moved by two employees using a harness and mechanical lift device from her bed to the bath, dining room, and to her very large wheelchair many times daily.

Could you care for a person in this condition? I cared for Julie for 12 years. The task got so overwhelming I could no longer do it. The best place for my daughter is the place where she now resides.

Prospective parents need updated information about Down syndrome along with prenatal tests, author says

Journalist Angela Blakston, writing in The Age [Melbourne, Australia], is troubled about the recent recommendation by experts in Australia that all pregnant women should be offered screening for Down syndrome. Blakston fears that universal screening would send a clear message that the lives of people like her son Gabriel are not worth living.

One of my main concerns is the “informed choice” that will become more readily available to women will exist perfectly in theory but will be little more than a subtly biased justification for termination.

… Will uniform national scanning serve to further marginalize people with Down syndrome and their families, particularly those “who knew”? We decried the barbarity of institutionalizing people with disabilities and fully dispensed with that model only two decades ago. Is uniform scanning that different in its intention: dispense with the “problem”, a so-called easy fix?

… My hope would be that any policy developed for uniform scanning would aim to keep abreast of advances in Down syndrome and clearly communicate these changes to expectant parents.

(Photo of Gabriel as a newborn from The Age)

Author Gary Presley has been riding in a wheelchair since he got polio 50 years ago, and says he has nothing to complain about. Writing in the Washington Post, he says he plans to “dance through life until hell freezes over.” An excerpt:

… like other people who have evolved from being “an invalid confined to a wheelchair” to a man advocating for such important issues as MiCASSA (the Medicaid Community-Based Attendant Services and Supports Act), as I have done for the past 10 years, I cannot forget that people with disabilities are among the last awaiting full integration into society.

I am one of a group once segregated by circumstance. That’s the significance of my story: that people with disabilities have made great progress in the last generation, and even though there’s much left to do, especially in the realm of employment, things continue to change for the better.

Gary Presley is the author of “Seven Wheelchairs: A Life Beyond Polio” (University of Iowa Press).

From the BBC News Magazine:

Noel Martin, a British construction worker who was paralyzed from the neck down after being attacked by neo-Nazis near Berlin 12 years ago, says he is planning a trip to Switzerland to commit suicide. Broadcaster Liz Carr interviews Martin for a BBC report (included here), then follows up with an open letter urging him to reconsider. Carr herself has a disability and uses a wheelchair.

An excerpt:

Worn down, feeling like a burden and with their needs unmet, it’s perhaps understandable why people like yourself might choose death. But surely before we even consider assisting people to die, we need to assist them to live.

One of the main problems I have with assisted suicide stories like yours, Noel, is that the media perpetuates the idea that to be disabled or ill must be the greatest tragedy of all. Disability inevitability equals no quality of life.

…I just think it’s too easy for a society to promote assisted suicide as a right rather than work to overcome the barriers to supporting older, ill and disabled people to live fulfilled and valuable lives. Forget the right to die, isn’t it more urgent that we campaign for the right not to be killed?

(Liz Carr and Noel Martin, BBC photo)

Writing in Parenting Magazine, Connecticut writer Hallie Levine Sklar tells how she came to accept her four-month-old daughter Johanna.

She and her husband Jamie had been “ambivalent parents,” self-absorbed and career-driven. When they found out after Johanna’s birth that their baby had Down syndrome, they were sure they wouldn’t be able to handle it.

But as time went by, they fell in love with their baby and realized that they had nothing to fear — “other than outdated stereotypes.” An excerpt:

For now, we’re taking life day by day. And while my days are filled with coos and giggles, sometimes at night, after she’s asleep, I find myself searching the Internet for information about Down syndrome. What I read fills me with dread: talk of increased risk of childhood leukemia, limited job opportunities, early cognitive decline, shortened life spans. It’s at these moments that I race into Johanna’s nursery and pick her up. As I feel her body, warm, plump, and soft against mine, I realize once again that she’s not some statistic in a medical textbook. She’s my baby, our Johanna.

The story is accompanied by galleries of photos of babies with Down syndrome, submitted by readers in honor of National Down Syndrome Awareness Month.

See:

• Photo Gallery – A Special Joy: Beautiful Babies with Down Syndrome
• Photo Gallery — A Special Joy 2: More Beautiful Babies with Down Syndrome
• POLL: If Sarah Palin were a father to special-needs infant son Trig and pregnant teenage daughter Bristol, what would you think about the VP nomination?