Along with the newness of having a girl, we also found out that our daughter has Down syndrome and a congenital heart defect (called AV canal defect, or AVSD) that will require open heart surgery sometime this summer. While the news came as quite a shock, we are excited about welcoming this sweet little daughter of God into our family and no sympathy is needed. We have been very blessed to have children sent to our family and feel that our daughter will also be a blessing to us.
Since receiving this news, we've realized that most people don't know what to say when we tell them or that people say things that they don't realize are offensive. While we don't want to be the politically correct police, we do plan on being an advocate for our daughter. So here are a few things that people should know:
- Using the word retarded for anything you don't like is extremely offensive. If you think something or someone is doing something unpleasant, please use a different word. Retarded actually means "slow" not stupid or rediculous.
- An individual with Down syndrome is an individual first and foremost. The emphasis should be on the person, not the disability. A person with Down syndrome has many other qualities and attributes that can be used to describe them.
- Please use people-first language. "The person with Down syndrome", not "the Down syndrome person." A person with Down syndrome is not "a Downs". It is also inappropriate to say "a person is Down syndrome"...they are a person, not a syndrome.
- A person "has" Down syndrome, rather than "suffers from," "is a victim of," "is diseased with" or "afflicted by."
Welcome to Holland
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this...
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome To Holland".
"Holland?!?" you say, "What do you mean "Holland"??? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy"
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around…and you begin to notice that Holland has windmills...Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes that's where I was supposed to go. That's what I had planned".
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very significant loss.
But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.
© 1987, by Emily Perl Kingsley. All rights reserved.