Silas Donham responds to posts on the New York Times Motherlode blog criticizing those who would reject potential chemical treatments intended to improve intellectual function of infants with Down syndrome. This difficult topic provoked a debate here on Contrarian that was remarkably thoughtful and respectful. But when the Times picked up on our discussion, many commenters were incredulous that any parent would hesitate accept such treatments for their children. A few had nasty things to say. Silas responds: First, the disclosure: I am Jenn Power's husband, father to Jacob and Josh, and son to, the blogger who got all this...

For those who have followed the debate over potential treatments for Down syndrome in the New York Times parenting blog Motherlode to its source here on Contrarian, I have assembled a series of links you might want to follow. Our discussion of this issue began with this post back in November. Jenn Power elaborated on her concerns here, and Dr. Ahmad Salehi, the Stanford researcher whose work touched off the discussion, responded thoughtfully here. Jenn's husband Silas Barss Donham, my son, weighed in here. Other reader commented here, here, and here. Jenn is the community leader of L'Arche Cape Breton in Iron Mines,...

Motherlode, a New York Times blog on parenting, has picked up on Contrarian's discussion about potential treatments for the intellectual impairment associated with Down syndrome — and touched off quite a debate of it its own. Our own discussion began with L'Arche Cape Breton Community Leader Jenn Power's disquiet at the assumption that Down syndrome constitutes a disease in need of curing. Jenn, who is both the adopted mother of identical twins with Down Syndrome and — disclosure — my daughter-in-law, spoke eloquently of Down traits that don't need fixing: [I]ncredible smiles, overflowing affection, stubbornness, great sense of humour, cute toes, love...

In late November, Contrarian reported that researchers at Stanford University had used a drug therapy to improve the learning skills of mice with a form of Down syndrome. Jenn Power, community leader at L'Arche Cape Breton and mother of twin boys with Down's, found the research distressing. She said people with Down's don't need a cure; they need "a society that values what they have to offer." This produced a fascinating discussion with many thoughtful contributions on all sides of the issue. At Contrarian's request, Dr. Ahmad Salehi, M.D., Ph.D., the lead researcher on the Stanford University study, has responded to...

Previous posts questioning the efforts to "cure" Down syndrome begin here and here. Tora Frank of Madison, Wisconsin, whose daughter Asha has Down syndrome, offers a different view: I would be eager to provide my daughter with a medication that could help her to learn more quickly, struggle less with everyday tasks, communicate better with those around her, make her needs known, allow her more independence. No, not eager—I would be *frantic* to do so. But is that assertion a comment about how I value my daughter? Am I somehow saying that I want her to be different—or that...

Josh glasses-csThis thread  (starting here and here) questioning efforts to "cure" Down syndrome began with a quick email from Jenn Power, community leader at L'Arche Cape Breton, mother of identical twins with Down syndrome, and—disclosure—Contrarian's daughter-in-law. At Contrarian's request, she has elaborated:
In the end, for me, this all comes back to people. Josh, Jacob, Mary, Cathy, Kate, Janet…these people have Down Syndrome. These people are my family, my friends, my teachers. Without the benefit of that extra chromosome, they would not be who they are. Their intellectual “impairment” gives them an insight and an emotional intelligence and maturity that I can only aspire to. They do not need a needle in their brain to make them more functional, to help them find their car keys. What they need is a society that values what they have to offer. I would like to think that I can be a part of creating that society
Full post after the jump.
Previous posts questioning the efforts to "cure" Down syndrome begin here and here. Peter Elliott, Research Director for the Down Syndrome Research Foundation UK, writes:
In today's world, the parents of children with Down syndrome can raise their hopes and change the future for their child. Surgeons can repair a malformed heart and this is very common in Down syndrome.  Internal organs can be repaired, including Hersprungs where the baby can die within days of being born.   Then there is the very high risk of Leukemia, Celiac disease, and there is an impaired immune system which makes survival difficult for a host of illnesses.  All of these can be treated with modern medicine and the children survive.  Most will call these cures. The last challenge is the mental handicap caused by a disturbance to the brain chemistry.   We now know there is this chemical imbalance which not only effects and impairs short term memory it also prevents the fast processing of information and the formation and accessing of long term memory.
Full post after the jump.
Previous posts questioning the efforts to "cure" Down syndrome begin here and here. Silas Barss Donham, husband of Jenn Power, father of Josh and Jacob, and son of Contrarian, writes:
A person's view of this type of medical research depends on whether one sees Down syndrome as a disease or as a natural genetic variation, like left-handedness or hair colour.  Most people in our society fall into the first group, but then, most people in our society don't know much about people with intellectual disabilities.  I suspect most people in our society wouldn't imagine the second group exists. This is related to one's ability to appreciate the unique gifts people with Down syndrome offer to those around them.  We do not see them, nor do they see themselves, as people who suffer from a debilitating disease, or as incomplete attempts at humanness.  We see them as complete human beings who have a unique experience and viewpoint. Trying to "cure" this condition seems as foreign as trying to cure maleness, left-handedness, or homosexuality.
Full post after the jump.
David Croft-sShortly after I posted Jenn Power's comments, a friend asked, "What if it were autism instead of Down syndrome — would you hesitate then? As if in reply, Contrarian received this email from David Croft, a Dartmouth father of two autistic children:
Sure, there are aspects of autism that I would like to better control in the boys.  There are manifestations that, if they were removed, would make the boys more functional and easier to handle - but would the removal of these aspects likewise involve the removal of aspects of the boys that make them them?
David's full comments after the break.