Do parents of kids with disabilities deserve admiration? Pity? Are they courageous? Self-important? Preachy? The public debate on these weighty topics has been raging for the past month over at the New York Times’ Motherlode blog site, and shows no signs of letting up.

It all started when Amy Julia Becker wrote a guest blog about her decision not to undergo prenatal screening or testing for Down syndrome during her third pregnancy. Becker and her husband, who have a 4-year-old daughter with Down syndrome, concluded that they didn’t need the testing because they had no intention of terminating a pregnancy if they found a nonstandard number of chromosomes.

The post triggered a host of reader comments that reflected society’s ambivalence toward people with disabilities. While many of the comments were supportive of Becker’s decision, some were critical and many focused on the perception that a person with a disability poses an unwanted “burden” on the family and the society at large.

Becker followed her initial NYT post with a second one, Is it harder to have a child with Down syndrome? In that post, which also drew a wave of emotional comments, Becker noted that her biggest stress comes not from her daughter’s disability but rather from the ignorant and negative judgments society makes about people who wear the distinctive signs of Down syndrome on their faces. An excerpt:

I have the privilege of being the mother of a child with Down syndrome and, through her, being introduced to a world of people who have taught me more about what it means to be human than my education and productive life skills ever could. Harder times may come, but I cannot imagine a day when I would regret her presence in my life or in our community.

And now for today’s installment on Motherlode: Guest blogger Stacie Lewis, whose 18-month-old daughter May has severe brain damage, says she shouldn’t be considered a hero just because her child has a disability. (Needless to say, emotional comments have begun to flow.) An excerpt from Lewis’ post:

I wonder why people are comfortable with the idea of disabled people and their parents as heroes. I fear it comes from the same place as that other disturbing sentiment, pity.

To this, I add a final thought.

It will come as a shock to some.

I am happy. My life is fulfilling. I worry sometimes, but I also find love and pleasure in my life every day. And, much of that is because of May, not despite her.

There are many people in the world who are alone and unhappy. Pity them.

Readers, what’s your take?

Created for use in mining, compound now sold as dietary supplement

Parents desperate to treat autism in their children are turning to an industrial chemical that has not been proven safe or effective for use in humans, the Chicago Tribune reports.

Called OSR#1, the substance is being marketed as a dietary supplement by Boyd Haley, a retired professor who was once chairman of the chemistry department at the University of Kentucky. Haley said the chemical, which is used to pull heavy metals from polluted soil, is a “food” that is “totally without toxicity.”

Sources at the Food and Drug Administration told the Tribune that Haley had not submitted sufficient information for the substance to be evaluated for safety. Experts expressed concern that children were consuming a chemical that had not been formally evaluated for safety.

The report on OSR#1 is the latest in a series of Tribune articles documenting unproven and potentially harmful “therapies” that are being given to children with autism. Earlier post here.

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.”

By Lisa Belkin in the New York Times Motherlode blog:

Kaney O’Neill, an Illinois mom who was injured in a fall a decade ago, is locked in a custody battle with the father of her 5-month-old son. David Trais is arguing that O’Neill is not fit to have custody of the boy because she is quadriplegic, having lost the use of her legs and some use of her arms.

A lengthy article in the Chicago Tribune last year chronicled O’Neill’s preparations for her child’s birth, as well as her work building a support system that includes her mother, a full-time aide and a trained service dog.

On Public Radio International’s The Takeway,  panelists pondered the intersection of parenting, disabilities and the law. The show’s host, journalist John Hockenberry, has been paralyzed from the chest down since a car accident more than 30 years ago. “As a disabled father of five I’m scared that a court would even consider a disability as an issue,” he said.

So-called ‘therapies’ amount to uncontrolled experimentation on children, experts say

Thousands of American children with autism are being subjected to “therapies” that are costly, unproven and may cause harm, an investigation by the Chicago Tribune has concluded.

Physicians are trading on hope to promote vitamins, intraveneous injections and even pressurized oxygen chambers to parents, saying they can “recover” children with autism. Yet science has not yet identified a cause or cure for the disorder.

The Tribune investigation found that laboratory tests used to justify the “therapies” are often misleading and misinterpreted, and said clinical trials have not found them to be effective.

Experts urged parents to exercise caution and demand to see documentation of beneficial results before agreeing to participate. An excerpt:

“They really should be seeing treatment of patients with unproven therapies as dangerous experimentation,” said pediatrician Dr. Steven Goodman, a clinical trial expert at the Johns Hopkins Berman Institute of Bioethics. “The problem with uncontrolled experiments … is that it is experimentation from which we can learn nothing.”

Related stories from the Chicago Tribune:

• Autism success stories more persuasive to some than hard data
• Questionable treatments for children with autism
• Experimental treatments

Rosa Monckton, whose 14-year-old daughter has Down syndrome, writes in the [UK] Daily Mail that the parents of children with disabilities face a shameful lack of support that is “driving some to breaking point – and even murder.”

Monckton’s new documentary, “When Mother’s Love Is Not Enough,” documents the pressures faced by parents who have children with disabilities, and examines the maze of bureaucracy often prevents families getting the help they need. It will be aired tonight on BBC1

An excerpt:

Our standards of care are dismal, our understanding of what these families need is non-existent and the endless bureaucratic process required to access vital services is mind-boggling.

… That’s got to stop. There has to be less money spent on administration and more on delivery; there needs to be less assessing and more providing.

… Faced with the exhausting round-the-clock care that the parents of disabled children have to provide, I find it all too easy to sympathize with those parents who do reach breaking point, and even with the tiny number who end up taking their child’s life. They are not evil; they just didn’t get the help they needed.

But what both heartens and astonishes me is the ability of the vast majority of parents of disabled children to soldier on, to keep on battling the bureaucracy and fighting for a better future  –  almost any future  –  for their disabled child. And they do so because they love them as only a parent can.

(Rosa Monckton and daughter Domenica, BBC photo)

Writing in the Buffalo [NY] News, Geralyn Spiesz salutes the “astounding achievements” by people with Down syndrome over the past few decades, thanks to parents and advocates who have pushed boundaries, opened doors and rejected society’s “outdated ideas.”

Where once these people were routinely institutionalized, she says, they are now increasingly receiving the health care and education they need to maximize their potential. An excerpt:

… In a few decades people with Down syndrome have gone from needing maximal help with basic tasks to completing degrees, having relationships and fulfilling their dreams … I believe we haven’t seen anything yet.

Spiesz is an occupational therapist and the mother of a son with Down syndrome.