Monday, March 21, 2011

World Down Syndrome Awareness Day

Today, the 21st March is World Down Syndrome Awareness Day. The date (21/3) represents the 3 copies of chromosome 21, which is unique to people with Down syndrome.

I am very pleased to present this guest post by Madonna Dries Christensen regarding the Many Faces Of Down Syndrome. 

When Dean was born in 1952, the doctor didn’t tell his parents that he had Down syndrome. When they were told, at three months, the doctor used the term Mongoloid. He said that Dean wouldn’t live beyond the age of five, and advised an institution. Dean's mother reasoned that if he were going to die young, she would hold him close for whatever time he had. By age eight he was difficult to discipline, and his parents made the heart-wrenching decision to place him in Columbus Developmental Center in Columbus, Ohio.

Dean’s sister, then 11, recalls feeling responsible for him, and that it was stressful having him at home. With the exception of her best friends, kids made fun of Dean. She admits to being relieved when he left, quickly adding that as an adult she realized he gave her something valuable: the gift of empathy, and the calling to pursue a Masters in Special Education.
As an adult, Dean’s IQ was about 35, akin to a two-year-old. He held simple jobs at the Center. He loved being outdoors; he followed sports on television, competed in Special Olympics softball and running, and enjoyed music. His family regularly visited him, and his friends at the Center loved him, too.
Dean died at age 58, in 2010. I’d never met my husband’s nephew. He was, to me, a cute child in grainy black and white photos.
In 2004, my second grandchild was born with DS. Unlike 50 years earlier, my daughter and her husband were flooded with support and information from doctors, family, friends, and even strangers via online networks. We quickly learned about the importance of early intervention in physical and speech therapy. My eyes, mind, and heart were opened to new experiences and challenges.
At three months, Sarah underwent open heart surgery. Post-surgery, her lungs collapsed and she contracted sepsis. She rallied and her heart now functions normally. Fortunately, she has none of the medical problems common to DS, nor is she physically handicapped. She rides a bike with training wheels, swims, dives, hikes, jumps on the trampoline, ice skates, the full gamut of activity. In public, people have approached my daughter and said that watching Sarah gives them hope for the child with DS who has joined their family.

That’s the rosy face of DS. Cognitively, Sarah is not on par with typical peers. Her First Grade schooling is divided between the regular classroom and Special Ed. However, she’s learning to read, does beginning math, attends Sunday school, and participates in Brownie Scouts. She dotes on her younger brother, William, and has friends who have DS and friends who do not. Conner, the boy she loves and who loves her, has DS.

Sarah’s older sister (by 16 months) tends to look after her, but not because of DS; she doesn’t yet comprehend that aspect. It’s her nature to mother children younger and smaller. But my daughter feels that the experience will help Grace understand fairness and compassion. As it did for Dean's sister.

DS is the most common genetic condition. World-wide, about five million people have DS. Unlike earlier eras, we see their distinctive faces on magazine covers and in television and movies. In school, children with DS participate in music, drama, sports, and cheerleading. They are elected Prom King and Queen; they graduate from high school. Some attend college or hold jobs in the community and live independently. A few marry. Some serve as ambassadors for Special Olympics or advocates for awareness. DS is no longer clear-cut black and white; it’s full color, and bursting with life.

An organization called People First encourages us to say “A person with Down syndrome,” not “A Down syndrome person.” Another group is dedicated to erasing the r-word (retarded/retard) from our vocabulary and replacing it with “Respect.” Congress passed a bill to strike the word retarded from federal legislation. We are reminded that DS is not an illness or an affliction, and that people with DS are more like others than different.

Despite the available support, my daughter says, “Having children with special needs can be isolating. People make assumptions about what it’s like—either that it’s horrible or that it’s simply giving a little extra help with homework. It’s neither. With that extra chromosome comes a host of little extras. Imagine any typical parent’s hectic schedule, and then add annual visits to the cardiologist, ophthalmologist, geneticist, and ENT; weekly speech, physical and/or occupational therapy; annual IEP meetings at school; frequent insurance and educational paperwork; extra time looking for clothes that fit (or altering them); and plenty of extra time reminding or assisting with ordinary activities like getting dressed or brushing teeth.

“And there are positive extras: extra bonds with parents in the same situation, extra happiness when your child reaches a long-strived for milestone, extra excitement when your child is invited to a classmate’s party simply because “she’s my friend,” and extra pride when your typical children advocate for their sibling.”

For this grandmother, there is extra love from a little girl who greets me with her big smile and an enthusiastic “Hi, Granny.”

Note from Ken Devine: Madonna is the author of the recently published 'Toys Remembered' the proceeds of all sales being donated to the Down Syndrome Association of Northern Virginia.

I have painted two small 'Soft Toy' paintings which will be auctioned on eBay some time today from my paintings blog, the proceeds of which will be donated to the same association.


  1. Oh Ken, these paintings are beautiful. Bless you for your generosity.

  2. Madonna Christensen21 March 2011 at 14:16

    Many thanks, Ken. I love the paintings. Let us know when they will be on eBay.

    Your paintings in the gallery are wonderful.

  3. Thanks for sharing this article. A big thumbs up for all those families who have children with DS, they're doing a remarkable job.
    And I love your nice of you to do them.

  4. Jill B (Sarah's Mom)21 March 2011 at 16:05

    Thank you! Those paintings will be adorable in a baby's room!

  5. Hi Randi
    You are way too kind. Generosity doesn't come into it as the paintings haven't cost me anything.

    Hi Madonna
    They are on eBay now but it was a very frustrating time getting used to eBay and I'm not sure if anyone overseas can make a bid at the moment. I might have to do some tweaking.

    Hi khushi
    I agree with you wholeheartedly on the thumbs up bit.

    Hi Jill
    Now, there's a surprise! I didn't expect to hear from you. Believe me, people like you the world over deserve our thanks, so please don't feel you need to thank me...but I'll graciously accept it because I generally accept anything that's free :)

  6. Madonna Christensen22 March 2011 at 00:33

    Hi Ken

    I checked eBay and could not find you.
    Maybe later.

  7. DS is no longer clear-cut black and white; it’s full color, and bursting with life. I love that.

  8. Hi Madonna
    Did you go to my kendevine original art blog (top sidebar) and click on 'make a bid' under the painting?

    Hi Tess
    Full colour and full-on!

  9. Madonna Christensen22 March 2011 at 12:07

    @Tess----One publication wanted to use the article but they do only black and white photos. I turned them down because I wanted the one photo to be in color (because of that sentence).

  10. Madonna Christensen22 March 2011 at 12:09

    @Ken... I had not gone through your art blog. I got through now and made a bid. But I got a message saying that seller requirements state seller does not ship overseas. It said I must contact Seller. Is there a way to let me bid and if I win I would pay shipping?

  11. Hi Madonna
    I think I've sorted it now and you should be able to change the country and see postage costs. I have to say that for one who already contributes heavily to the association, having to bid is...I'm not sure...a bit...mmmmm!? If you are not successful I will think of a way to put a smile on your face:)

  12. Madonna Christensen22 March 2011 at 20:03

    Okay, I was able to bid on the lion. I was also going to bid on the other one, but I noticed that payment is by PayPal. I don't use that, so if I win, ??? We'll work it out, I guess.

  13. Madonna Christensen23 March 2011 at 01:38

    Oh, okay, I get it, I can use Visa through PayPal. We're good.