Three years ago, Kelle Hampton burst onto the scene with a telling of how her daughter's diagnosis of Down syndrome was delivered. In a recent post, she shares how her daughter's doing now and what they've learned. Continue Reading
August 6, 2013
Down syndrome birth statistics, so far
Over at Down Syndrome Affiliates in Action (DSAIA), my report on birth statistics has been posted. It explains the above graph showing an overall decline in Down syndrome births in 2013, so far. Continue Reading
July 23, 2013
An incredibly complicated question … the most fundamental, existentialist question
Headlines and reporting continue to roll in on the news of scientists shutting off the extra 21st Chromosome in cells in a petri dish. In another column, a father ponders some of the same issues that have been on my mind with this news. Continue Reading
July 19, 2013
Down syndrome needs to be “blocked,” “fixed,” “cured,” and “silenced.”
Following up on the news from yesterday, headlines reporting on the development where scientists have "turned off" the extra 21st Chromosome that is the basis for Down syndrome spread a telling message of what news editors think will grab the public's attention: Continue Reading
July 18, 2013
New research changes perspectives on Down syndrome
In an ironic twist, while traveling to present at a conference on prenatal testing and Down syndrome, news broke that they may have "fixed" Down syndrome. The reactions to this news may change perspectives on Down syndrome. Continue Reading
July 15, 2013
Syngamy: when you became a unique individual
Several years ago, I learned about "syngamy." It informed how we are to think of one another. I had reason to be reminded of it for a couple of reasons this week, one circumstantial and one sad. Continue Reading
June 19, 2013
The Shape of the Eye: our diagnoses do not define us
The Shape of the Eye was originally published in 2011. This Spring, it was re-issued in paperback and is enjoying the attention it deserves. A memoir by George Estreich about many things, but prompted by the birth of his daughter Laura, it has much to share for all of us. Continue Reading
June 5, 2013
What are we losing if Down syndrome disappears?
In a previous post, I reported on an account that suggests Down syndrome may already be starting to disappear from our society. But, if that is the case, what are we losing if Down syndrome disappears? Continue Reading
June 2, 2013
The world doesn’t get to have it both ways with Down syndrome
Last week, my daughter was assessed to determine whether she qualified for a waiver under our state's Medicaid program. When informed that she may be initially denied--and many wrongfully are--I thought, "you don't get to have it both ways." Continue Reading
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