It Just Shouldn’t Be

Several weeks ago, I wrote a few blog posts to raise awareness about children with Down Syndrome.  I did that in part because my daughter has DS and the more people in this world that are informed and aware of her capabilities and potential, the more opportunities she’ll have.  The more facts people have, the less she will suffer unnecessary discrimination at the hands of well-meaning people who are simply misinformed.  My intent was very personal.  But I also wrote on DS because I wanted to set the foundation to share the information you will read in the chilling words that follow.

The reality is that the United States is one of the most advanced in the world when it comes to understanding Down Syndrome and helping kids and their families to maximize each person’s individual potential.  There are amazing organizations here, like GiGi’s Playhouse, the National Down Syndrome Society, and the National Association for Down Syndrome, just to mention a few.  If you have a child with Down Syndrome, this is the place to live.  We have tons of great resources available to us.

Trust me when I tell you that all countries are not like us in this regard.  In many countries around the world, the view of those with DS can only be described as archaic.  Nowhere is this worse than in the Eastern European countries where, at the advice of medical professionals, babies born with DS are immediately placed in orphanages.  The care in a majority of these orphanages is very poor.  Inadequate staffing, medical care, and facilities further exacerbate their developmental delays, making them unattractive to couples seeking to adopt.

In most of these countries, when the children reach 4 or 5, they are transferred into a mental institution.  The care they receive there is simply inhumane.  We would be charged and convicted of a crime if we treated an animal in the same way they are treated.  Tied to their cribs, often wrapped so that they cannot use their hands, receiving a single diaper change per day (if they’re lucky), many don’t survive their first year.  They succumb to the effects of malnutrition, dehydration and hypothermia.  And the lucky ones die early.  The survivors will continue to grow, but are often kept in the same crib for the rest of their lives.

I read this blog post about 6 weeks ago.  That same night I read this one.  I’m glad it was fairly late at night and that I was alone, because I sat on the couch and cried my eyes out.  I don’t know that I’ve ever witnessed such injustice, especially inflicted on those who are completely unable to act on their own behalf to stop it.  Please let me both encourage you and warn you.  I encourage you to read them both.  It tells the story far better than I can.  Look at their faces.  Imagine your child in that crib.  Watch the video.  Please don’t look away.  But I’ll warn you, you will never free yourself of those images.

Finally, let me answer the question of “But what can I do?”  Resse’s Rainbow has started a new program called “Connecting the Rainbow,” to provide information, support and resources for families caring for children with Down syndrome living in countries around the world where, until now, there has been none.  If God wrecks you, and you need to do something, anything, you can find out how on their site.