Tuesday, October 14, 2008

Mother of Invention

This week on "This American Life":
Karen Sosnoski's one-year-old son, Anton, was born with what's known as Mosaic Down Syndrome, a rare condition where some of his cells have the extra chromosome that causes Down syndrome and other cells don't. So as he grows, he could end up having all the health risks and challenges of Down syndrome...or just a few of them. Through a website, Karen found a kid with the same diagnosis, named Tim Colvin, who was doing really well...perhaps because his mother, Kristy, invented a surprising and unusual way to raise her son. When some people hear about what Kristy did, they're shocked. Karen went to talk to Kristy and Tim about how Tim was raised. (13 minutes).

I didn't think I would, but I cried when I heard this story. So many things in it to wonder about as I find my way parenting Emma & Joe.

To hear this story click HERE and listen to Act One: "Mother of Invention."

*THIS JUST IN: Read the comment left by Kristy (mom of Tim) by clicking comments below.


Anonymous said...

Amy, I just finished listening to the broadcast, and I loved it! Oh my, up until the last little part where Tim jokes about not doing the dishes anymore, I just didn't know what to think! Did Kristy make the right decision...but you know something? It doesn't matter because Tim is doing just fine! Thank you so much for posting the link!

Kristy said...

I am glad to stumble on your site and see that you have heard our radio show on This American Life.

I wonder sometimes if it was the right decision to not tell others. Today, I tell everyone! For us, at the time, it worked. Because 15 yrs ago, when Tim started school, we didn't have all the great resources that we have now! And, I saw a real difference on how Tim was treated when teachers and other people knew he had mosaic Down syndrome. I wanted Tim to reach his full potential. And, I saw that for him, that was impossible as long as his teachers knew about his dx because when they did, they would treat him different.

Unfortunately, parents still have a lot of work to do!But, we are making huge strides compared to all those years ago!

Children with any differences are treated differently and are not expected to act like their peers or learn as much as their peers! And even though I do understand that children with Down syndrome may not learn as quickly as those without Down syndrome, I firmly believe that they can still learn everything their peers learn! They just may need it to be explained differently to them.

As for Tim and his joke about dishes.... I am in a house full of testosterone. We have a running joke that the man of the house shouldn't do any house work. This IS a joke! And every male in the house is involved with house cleaning! They just try the chauvinistic moves on me to get me riled! LOL

If you want to know more about Tim and I, you are welcome to visit our blog at www.mosaicmoments.today.com
and please visit International Mosaic Down Syndrome Association (IMDSA) at www.imdsa.org to learn more about mosaic Down syndrome.

Thanks for listening! If you have questions I am always open! Just drop me a comment on my blog!

Fred said...

I'm glad you all were able to listen to the piece and connect with it. I'm Karen Sosnoski's partner and Anton's dad.

Kristy's International Mosaic Down Syndrome Association (IMDSA) conference that we attended where we met Tim when Anton was just a few months old was really a memorable and hopeful experience for me primarily because of Tim.

In the first few moments of the conference while we were waiting for the program to begin, Tim walked over to me as I was holding Anton and read our name tags and said "Anton? Is that an eastern European version of the name Anthony?" He also commented on my last name "Zeytoonjian? Is that an Armenian name? I've read about the Ottoman empire . . ." I was impressed and astounded that he was so interested and aware of these details. Most people I run into have no idea about the etymology of these names and often say things like "what kind of name is that!" I'd be thrilled if any child of mine grew up to be as thoughtful, informed and curious as Tim.

You may be interested in another short piece that Karen wrote for the LA Times earlier this year: http://www.latimes.com/features/health/la-he-myturn11-2008aug11,0,7315981.story

You can also learn more about about Karen and her other work at:


Michelle said...

Interesting piece! I've often wondered if people didn't know Kayla had Ds would they have different expectations of her, would they not have stereotypes about what she could/couldn't do. I didn't realize that those w/mosaic Ds could have so few physical characteristics that you couldn't even tell they had Ds...I was surprised none of his teachers knew.