lunes, 21 de marzo de 2016

MercatorNet: Breaking the Circle of Sadness

MercatorNet: Breaking the Circle of Sadness

Breaking the Circle of Sadness

How a little girl with Down syndrome changed my heart and opened my mind
Christopher Blunt | Mar 21 2016 | comment 1 

Recently, I did something I’d never done before: I watched a new movie — and then, the very next day, I watched it again. I thought Disney Pixar’s animated Inside Out was that good. The central characters are personified representations of 11-year-old Riley Anderson’s emotions: Joy, Sadness, Fear, Anger, and Disgust. They live in the girl’s “headquarters,” and take turns operating a console which guides her responses to life events.

The film is funny, captivating, and ultimately very thought-provoking. Determined to keep Riley happy on an especially important day, Joy attempts to confine Sadness in a limited area far from the console. This “Circle of Sadness” leads to disaster, which the characters must spend the rest of the film resolving. We ultimately see that true happiness comes when Joy and Sadness work together. Often, the most significant and satisfying experiences of our lives flow from events that are in some way sad, painful, or disappointing. When we go out of our way to avoid all unpleasantness, we usually wind up empty and discontented.

Still, when faced with a situation which is bound to bring sadness or disappointment, our natural inclination is to evade it — and to disbelieve those who suggest that we broaden our perspective.

Speaking for myself, for many years I was particularly sceptical about what I heard from the parents of children with Down syndrome. Down syndrome, or Trisomy 21, is a chromosomal abnormality in which a person has three copies (rather than the usual two) of the 21st chromosome. The result is often numerous physical defects, along with significant brain development issues and moderate-to-severe intellectual disabilities.

Yet overwhelmingly, parents and siblings say their family is enriched by the member who has Down syndrome. They love and have pride in the child with Down syndrome. They describe him or her as a “blessing,” or “the best thing that ever happened to us,” and say they wouldn’t change a thing about him or her.

I would listen politely to such parents and siblings, but quite honestly doubted much of what they said. Who in his right mind, I wondered, could be happy with a family member who was so “defective?” Who in his right mind would not prefer that his child develop with typical abilities, and a typical intellect? After all, I reasoned, brain power is the human’s most important and distinguishing attribute. Isn’t it? How could anyone be “enriched” by a child who lacks it?

I concluded that these families of children with Down syndrome were most likely telling themselves they were “blessed” and “enriched,” as a coping mechanism. Keep telling yourself you’re happy having a 47-chromosome child, if it makes yourself feel better, I thought. As for me, I’ll stick with the 46-chromosome version.

As it turned out, the choice wasn’t mine to make. I would get to learn first-hand just how shamefully presumptuous and ignorant my attitude had been regarding families which included a member with Down syndrome. Shortly after our youngest daughter’s birth, in the summer of 2013, that’s exactly the diagnosis she was given. Sadness burst forth from the circle in which I’d wanted to contain it, and I was emotionally devastated. Over the ensuing weeks, as I came to grips with my daughter’s diagnosis, I went through a version of the Kübler-Ross five stages of grief or loss. However, in my case, “acceptance” wasn’t the end of the road. I not only accepted her, but embraced her condition as a positive, integral, component of who she is.

I’ve since gone on to discover that many of my preconceptions about Down syndrome were actually misconceptions.

Are children with Down’s generally slower to reach particular developmental milestones than are their peers? Yes. But they do reach them, and sometimes in unexpected ways. For example, as is true of many children with Down syndrome, our daughter’s speech has taken a long time to become intelligible. However, she does know what she wants to tell us, and she is quite persistent in her efforts to make sure we “get it.” She has learned to use sign language (which we taught her) to communicate with us the way her siblings did with speech at this age.

Furthermore, she loves books, and from a very early age even knew how to correctly orient a book so the images were right side up. She easily recognizes pictures, and makes signs to correspond with what she sees (“dog,” “sheep,” “grandpa,” etc.). When we say prayers together as a family, she makes the sign of the cross and chimes in on the words she can say. There’s nothing wrong with her ability to think.

But the most important thing I’ve learned is that the trait which most distinguishes humans from the rest of the animal kingdom isn’t our intellect or brain power. It’s our ability to love others. People with Down syndrome, whatever their intellectual development happens to be, are supremely loving. Our daughter gives the best hugs in the world, even to people she’s only recently met. Her smile lights up every room with a hundred watts of happiness. We like to say that she has an “extra-sweetness chromosome,” and we know many other families of children with Down syndrome who say similar things.

Moreover, people with Down syndrome teach those around them to love unconditionally. Our family is a greater community of love with our daughter in it than it was before. She really has been everything that other families have said about having a member with Down syndrome. All of those great joys have come to our family along with — and, I dare say, because of — our daughter’s initial diagnosis, which had seemed so sad to me at the time.

If you’ve seen Inside Out, you know our experience has been a core memory ball that’s dark blue on one side and bright yellow on the other. And those are the best kind.

Had it been up to me, with my attitudes before my daughter’s conception, I would have forever confined my initial sadness regarding Down syndrome. I never would have voluntarily chosen the 47-chromosome version. So … thank God it wasn’t up to me. Breaking open the “Circle of Sadness” has enriched our family like nothing else in the world.

Christopher Blunt is a freelance writerpublic opinion research consultant, and father of five. He and his family live on a fifteen acre farm in rural mid-Michigan. He is the author of the novel Passport, and the forthcoming novel Full Cycle.
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If you think of brave women who resisted oppression, the names of Aung San Suu Kyi or Malala Yousafzai come to mind, along with a host of others. But considering that yesterday was World Down Syndrome Day, why not nominate a talented young painter from Azerbaijan, Maryam Alakbarli? She is 22 and has had several exhibitions of her dazzling paintings in Paris, Rome, Moscow, and her native Baku. She also has Down syndrome.
 “Girls can do anything” is a popular slogan, but there are few who exemplify this better than Ms Alabarli. Read about her in Mary Le Rumeur’s article below. Christopher Blunt has also written movingly about his experience in caring for his Down syndrome daughter. 

Michael Cook 



Breaking the Circle of Sadness

Christopher Blunt | FEATURES | 21 March 2016
How a little girl with Down syndrome changed my heart and opened my mind

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On World Down Syndrome Day we meet a high achiever with the syndrome.

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