Friday, March 21, 2014

3-21 World Down Syndrome Day

It's one of those under-appreciated holidays today: World Down Syndrome day, and I'm posting in honor of my daughter, "Tertia," who is 14 now and never fails to make my day brighter, just by being who she is.  At birth, the nurses said, they could tell she had an extra copy of chromosome #21 just by her "floppiness" and low muscle tone, and a certain slant to her eyes.  It took me a little longer and a lot of research before I could understand and accept that diagnosis, but I can say in all honesty now that the Down Syndrome diagnosis is only a small piece of our daily lives.  However, it's a piece that we can't ignore.  It's always there, and how we respond to the unique challenges the diagnosis brings will have a measurable impact on her life.

Tertia goes to a special education class for 8th grade with a more intensive academic focus than some. She has some classes (choir, dance, art) with the general population of her school and has genuine friends in that group as well as her own special class.  As you can see, she still is in her Disney princess phase, but fills the calendar with notes about concert, plays, and friends' birthdays.  Speaking of birthdays, she has an uncanny ability to remember them.

Things to be grateful for:

  • She was born in the information age.  Answers to questions about medical care, education, social services and support groups are only a few internet searches away.  
  • The Down syndrome community itself is generous and supportive.  While I was still in the hospital, unsure how to process the information I was getting, I received calls from two different moms whose children had the same diagnosis, with lots of realistic encouragement for me.  It was so much better than the printed booklets the hospital handed out that there is simply no comparison.  I've been able to pay that forward a few times for other new moms and there is no better feeling.
  • No routine institutionalization anymore, at least not in America.  I just spoke with a man my age who never met his own sister until he was an adult himself.  I can't even imagine.
  • Modern health care, advances in education, and overall, a more tolerant and accepting attitude toward people who are "different".  
Things to be concerned about:
  • Prenatal testing.  It is possible now to diagnose Down syndrome very early in pregnancy, and frequently those mothers experience subtle or not-so-subtle encouragement to abort such a pregnancy.  I heard that an expert in Denmark proclaims his country will be Down syndrome free in another decade or so.  As if that's a good thing.
  • Newborns with Down syndrome in most modern countries have a very good expectation of a happy, healthy and productive life.  But in some countries, in Eastern Europe particularly, institutionalization at birth is still the norm.  Unless these children are adopted (usually not by someone from their birth country) they face transfer from orphanage to mental asylum sometime before they turn 18, and almost certain decline and death shortly after that.  This is a tragedy that few in America are aware of.  Check out Reece's Rainbow for more information on how anyone can help fund grants to adoptive parents.

1 comment:

Wonky Patchwork said...

It's a holiday that's a bit under appreciated over here too, but I have a really good friend with a little boy who has Downs Syndrome, so it didn't pass me by. It was a hard adjustment for them too but he fills their lives with so much joy and love. And my friend also finds it incredibly rewarding to try and help new Mums dealing with the issue. Over here the thing to do was wear 'odd socks', so I wore mine with pride! Your daughter looks gorgeous, her eyes have such a happy expression to them and I'm not surprised she brightens your every day.