March 21, 2012

Thoughts On World Down Syndrome Day

Today is World Down Syndrome Day.  Though both our living children are "typical" (whatever that means), this does have meaning for me:

When I was a kid, my family lived in Irving, TX from 1968 - 1973.  During that time, a family with four children lived next door to us, and we became friends (especially the parents).  The dad was a friendly pediatrician from Tennessee, and the mom was a gracious, lovely Norwegian lady.  They had two sons and two daughters, and their oldest child, Erik, had Down Syndrome.  In 1968, resources for parents of special needs kids were severely limited.  Back in those days, talk was of "educable mentally retarded" vs. "trainable mentally retarded".  Erik lived at a "school" in Oklahoma, and it broke his parents' hearts not to have him at home.

One day, my parents learned that a new school affiliated with the University of Dallas was opening.  This school was going to employ new theories and methods to teach kids with Down Syndrome - really teach them. That night, my parents had Dr. and Mrs. Barret over for drinks and showed them what they found about the school.  If I remember the story right, Dr. Barret called the "school" in Oklahoma that night to tell them that he would be coming for Erik in the morning, and they never looked back.

I didn't grow up thinking of Erik as weird; he was just Erik.  Sure, he was different from me, but so was our nice black cleaning lady (emphasis on "lady"; I really caught it the one time I referred to her as a "maid") named Ella.  So what?!

Once upon a time, Erik would have spent his life in an institution and probably would have died at a young age from inertia and not having much of a life.  When Dr. Barret visited my parents thirty years ago or so, I remember his saying that he had recently been helping Erik plan for his retirement (he was an orderly in a hospital at the time and had been for many years).  Think about that.

In 2004, when we learned that our son Paul's heart defect, Tetralogy of Fallot, often came along with Down Syndrome, I thought of Erik.  Down Syndrome?  Didn't phase me.  The other possibilities?  They terrified me.  Down Syndrome, though, didn't seem much of an obstacle, thanks to Erik.  Recently, I reconnected with Erik's sister Becky, my first "bff" on Facebook, and it has made me really happy to see pictures of him and to know he's doing well.

When I had to relay the news of Paul's heart defect and other problems to Andrew, he was in Scotland, on his first business trip since we'd been married.  He was with his co-worker Jason, staying with Jason's relatives.  If he had to be away from home when getting the news, he was in a great place because the McCluskey family had a sweet little girl named Kate with Down Syndrome, and they were able to understand to a large degree what Andrew was going through, learning that Paul was going to have special needs, potentially even fatal ones.  Being with their family at that time was a huge comfort to Andrew, and we have stayed in touch with them over the years since.  Though I've never met Vicki, we've become friends and are in close touch on Facebook.  I see a picture of "wee Kate" and her three brothers on our fridge every day, and I get to read all the time about her trials and triumphs and her performances with the Ups and Downs Theatre Group, and I feel like I know her, even though we've never met.

We are also fortunate to be part of a church that provides a lot of support to families with special needs kids of all types, so, I was confident that we would have all the support we needed with Paul.  I will never forget reading an interview with our head minister's wife many years ago.  In the article, she talked about how she had always wished for a "normal" life when she was growing up.  To paraphrase, she said, "I'm a tall white woman, married to a short, black man.  I have a son with Down Syndrome and a son with autism, and I work for a church.  I'll NEVER be normal!"  Whether Paul had Down Syndrome or one of the other congenital issues associated with his heart defect, I knew we could find people who could relate to us, our daughters, and him, people who would help us navigate the years ahead.

Today, on World Down Syndrome Day, I am grateful.  No, I don't mean grateful that my kids don't have Down Syndrome.  I'm grateful that now, in 2012, so much more is understood about Down Syndrome and that parents of kids with Down Syndrome have vastly more resources available to them.  I'm grateful that adults with Down Syndrome are not hidden away in institutions, but are given the skills and opportunity to support themselves and live independently.  I'm grateful that America has come so far.

Sadly, not everyone has come so far.  As recently as 2004, our friends in Singapore told us about a couple in the church there who were having a hard time because their Ob/Gyn told them they should have an abortion because the baby they were expecting had Down Syndrome.  Yes, you read that right.  The doctor didn't just tell them that abortion was an option if they wanted; he told them they should have an abortion because their child had Down Syndrome.  I'd tell you what I think of this, but I really can't, not if I want to keep this blog from having an "explicit" rating.

So, if you live in a place where resources abound, be grateful today for those resources, whether you yourself need them or not.  If you live in place where understanding hasn't advanced like it has here, then 1) learn and 2) teach others.

1 comment:

  1. thanks for posting such a lovely important subject to share.