Choice in the Cold Light of Day: USA Today Column on Down Syndrome Screening

There is a column in USA Today from a couple of days ago by Dr. Brian Skotko, concerning the implications of the new blood test screening for Down syndrome that will be available at 10 weeks of pregnancy.

The article speculates about what may happen now that a far less invasive test for Down syndrome will be available: "Will America cull people with Down syndrome?"

Dr. Skotko writes that he and his team surveyed over 3,000 families who have a family member with Down syndrome to find out how they view the effect this condition has had on their lives. Surprisingly (or not!), the results were massively positive, with 99% of respondents answering that they truly love their DS children and even 88% of siblings responding that having DS in their family has made them better people.

Besides looking at the expressed satisfaction (for lack of a better word) of DS families, Dr. Skotko also mentions the achievements of some people with Down syndrome.

And he goes on to say, "I care deeply that patients receive accurate, up-to-date, balanced information so they can make informed decisions. Yet, as a physician, I am not in the business of telling expectant couples what pregnancy decisions they should be making when their fetus has Down syndrome. That is their decision."

Very difficult decisions indeed.

What Dr. Skotko does not address is the overall impact on humanity that could result from a sharp reduction in DS births. Do we really want to mess around with the essence of humanity by altering the balance and diversity that has existed for tens of thousands of years?  Do we have the wisdom that is needed to alter the nature of our species? Some may say, yes - many would say, clearly not.

But, equally clearly, the impossibility of imposing responsibility for the societal impact of these decisions on pregnant women and their spouses.

And don't forget, it doesn't end with Down syndrome. Who knows what possibilities could be opened up with advances in genetics and medicine, even in the short term, never mind in a few decades? This is a conversation that is very large and yet as intimate and personal as there is.

I am afraid that time and science may not allow us to adequately weigh or understand the consequences.

Person with Down's Syndrome Wins Employee of the Year

Awesome story!

This type of news really bodes well for the prospects of more disabled people taking a meaningful roll in the workforce.

Wow! 8 awesome art ideas for special needs kids from an art therapist

A little cramped for time here so just going to have to make do with a link!

Shirking, I know!

These ideas are from the really great blog, Love That Max.

How do You Find a Babysitter for Your Special Needs Child?

Finding a good, reliable babysitter is never easy at the best of times.

When you have kids with special needs, this challenge is amped up several-fold.


Paula Shuck over at the Thrifty Mommas Tips blog just put up a post about this yesterday and her thoughts ring true, that's for sure.

The most common solutions for this problem usually come from within the family - either older siblings or grandparents. However many people do not have the luxury of having these options close at hand. Even when you do, many special needs children present special challenges that go beyond the normal capabilities of a grandma or big brother...

The CLSC often has a list of babysitters you can refer to, however this is offered as information only - these babysitters are not verified or recommended in any way. And very few of them would be capable of handling kids with special needs.

Another solution for some people could be to take advantage of the respite services offered by ARSDI. Their facilities, such as the Betournay Centre in St. Lambert, do look after special needs children and even have the option of weekend respites. So this is a possibility that could be followed up with the ARSDI directly.

As a way of opening up other options for families in the Montreal south shore area, RAPID (Resources for the Anglophone Populations with Intellectual Disabilities) is going to be facilitating an adapted babysitting course for babysitting children with special needs, on or about the last weekend of November. Stay tuned for the details, which will be announced soon