the truth about Down syndrome

For those researchers, clinicians, geneticists, ethicists and law professors who don’t believe what families have to say, yesterday the New York Times published a research-based article containing facts about The Truth about Down Syndrome.

I’ve lost count of the number of times I’ve told audiences at health conferences:

Aaron is a delight and a joy, and having him as part of our lives has changed our family for the better.  Our struggle comes from a society that fears differences and flawed health and education systems, NOT from Aaron himself.

For the professional audiences, who place heavy stock in research and data, I fear my (true, but anecdotal) stories about Aaron ring hollow.  I know I’m often written off as a cheerleading and hysterical mother.  

So thank you to authors and researchers Jamie Edgin and Fabian Fernandez for dispelling myths about Down syndrome.  Perhaps if you don’t believe me, you’ll believe them?  Research actually points to the Down syndrome advantage:  parents experience lower rates of divorce, siblings and kids with Ds report they are happier, medical challenges are now easily identified and fixed.

As for society and systems?  Perhaps if the professionals read this piece and take it to heart, they will stop using offensive language based on their own distorted personal values (newsflash:  my child is not abnormal), and stop Tweeting “Abort it and try again” to prospective families.  If you don’t believe us, believe the facts.  

Now I’m off to take my son and his friend (who both happen to have Down syndrome) to the science museum and then out of lunch afterwards, because our lives are so full of suffering and burden.  Not.

 

2 thoughts on “the truth about Down syndrome

  1. modernmessy says:

    This is great! I totally get what you’re saying about talking until you feel blue in the face but people just don’t “get” it. Judging from some of the comments on the article, many people still don’t get it. How can people not realize that disability is all around us, either by birth or by accident or illness. It is a part of life that will always be with us.

  2. codetechnology says:

    Yep. Aaron had a day filled with ‘suffering’ today. He suffered through his deluxe Saturday morning breakfast. Some more suffering while Facetime-ing with friends. Suffered through a trip to the Eco-Centre, where we took turns smashing recyclables into the bins. He probably had some suffering in front of the xBox (I’m not sure as I was napping), then he certainly suffered over dinner because, like many kids with Ds he is left-handed — which meant our elbows banged a few times. Unbearable suffering, really tough. Then out for ice cream. (You can imagine the suffering that went on there. my god. it was agony picking the toppings.)

    Send Mr. Dawkins over next Saturday and he can suffer through a day with Down syndrome. Actually, cancel that, the man is obviously a pretentious ass. He’s not welcome here.

    We’ll suffer along quite well without him.

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