27 Nov

Posted at 03:59h in Health, That's life by
Shortly 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...

27 Nov

Posted at 03:02h in Health, That's life by
Many readers have responded thoughtfully, and at length, to our post about  Jenn Power’s reaction to news that Stanford University researchers had made headway toward a potential treatment for the cognitive impairment that is one feature of Down syndrome. I’ve received a wide range of views from parents and researchers, about both Down syndrome and autism. Thanks to all who contributed. Contrarian is on the road with limited Internet access. I’ll be posting these as I can over the next few days, more or less in the order I received them. Several are quite long, and deserve to be read...

24 Nov

Posted at 21:11h in Health, That's life by
Jenn Power, Community Leader of L’Arche Cape Breton, mother of twin boys with Down syndrome, and—disclosure—Contrarian’s daughter-in-law, had an interesting reaction to news that a Stanford University research team has made headway toward a potential treatment for the intellectual impairment that is one of Down’s symptoms: She welled up with tears. The researchers probed the brains of mice genetically engineered to develop a rodent version of Down syndrome. They found that a region known as the hippocampus lacked a neurotransmitter that enables the brain to perform contextual learning. This is the process of gaining and applying knowledge in real-world situations—things...

28 Nov

Posted at 12:05h in Health, That's life by
Peter Elliott, Research Director of the Down Syndrome Research Foundation – UK, elaborates on his view of Down Syndrome as a medical problem warranting intervention. Money quote: The children need our help; they have put on a brave face all of their lives. There is nothing to fear from a cure that is going to improve their memory and reduce brain injury. More after the jump.

14 Jan

Posted at 23:18h in Health, That's life by
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 contrarian.ca, the blogger who got all...

02 Dec

Posted at 16:07h in That's life by
This morning, a 60-year-old teacher stopped into the CBC’s Sydney studio with a donation for the station’s Christmas campaign in support of Nova Scotia food banks. Information Morning host Steve Sutherland took the occasion to quiz her about the teacher’s pending job action. In the banter that followed, the teacher made several veiled references to “working conditions.” Sutherland, who has a gift for drawing people out, pressed for details: What exactly is it about the working conditions, he asked. The teacher hemmed and hawed before blurting out, “It’s accessibility!” She went on to complain about the inclusion of children with disabilities in regular classrooms,...

28 Feb

Posted at 23:24h in That's life by
Some of you know my grandchildren include Josh and Jacob Barss Donham, identical twins with Down Syndrome, who also fall somewhere along the Asperger’s spectrum. These two are apples of my eye, and I treasure the time I get to spend with them. Saturday was a special night for Josh, as his father, Silas Barss Donham, explained in a Facebook post: Most anyone who knows Josh knows his affection for the opening tune of Spring, by Vivaldi. He loves exploring the demo mode on his keyboards, and that was a tune he always rooted out and played on any device that...

26 May

Posted at 20:17h in That's life by
When the Scottish writer and comedian Lynn Ferguson was 37, she got pregnant, and there ensued an battle of wills with staff of the hospital where she was to give birth. She told the story recently on The Moth Storytelling Hour. Almost as soon as everybody agreed that I was technically in the family way, they decided that I should have an amniocentesis. An amniocentesis is, like, an invasive test. They put a needle into the fluid here—the amniotic fluid—and it can tell you whether the baby has Down Syndrome or not. But there’s also a one percent risk that it will...

02 Aug

Posted at 03:02h in Civil Liberties, Family, Health, That's life by
Last month, University of Massachusetts scientists working with laboratory cell cultures said they had succeeded in suppressing the extra chromosome associated with Down syndrome, a technique they predicted could lead to treatments targeted at the symptoms of the condition. Halifax resident Renee Forrestall, whose 22-year-old daughter Marie Webb has Down Syndrome, condemned the research as akin to cultural genocide. We’ve got a genetically similar community, visible minority who are being targeted and terminated globally. People think, “Well, this is the way it is and these people just shouldn’t be.” A friend who knows I have identical twin grandchildren with Down...

17 Apr

Posted at 10:01h in music, That's life by
The late Janet Moore, the founder of l’Arche Cape Breton who was profiled here on her death in 2010, was a huge fan of Rita MacNeil. Janet’s friend Mary MacDougall arranged for the two to meet at Rita’s Tea Room on her 60th birthday, in 2007. Jenn Power, Atlantic Regional Co-ordinator for l’Arche (and my daughter-in-law) described the event on her blog. Those of us who love Janet were more than a little apprehensive as we prepared for the celebration. Janet is getting old, and showing her age. As with so many people with Down Syndrome, dementia is slowly creeping in...