What To Do When You Have a Kid With Down Syndrome
Nov 29th, 2008 by Sean
So you’ve given birth to a kid with Down syndrome (DS)? Congrats! Whether you knew before birth or not, settle in, because it’s time to get busy. (“Did you know?” will likely be one of the most common questions you’ll get. It refers to “Did you know you were having a kid with DS before you gave birth?” and it’s meant to sort you into one of two categories: Us or Them. More on this later.)
Here is a quick list of 7 things to do:
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Celebrate
Congratulations. You’ve just had a child, and he or she is a beautiful child. Sure, there will be some extra stuff for you to deal with, but when is there ever a guarantee — with any child — that you won’t have some extra stuff to deal with? Your kid is wonderful and will make you a better person. Celebrate.
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Read this
This is the article that started it all for us. Written by Amy and it’s awesome. It might give you a new perspective.
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Learn sign language
Right away. Don’t wait. Seriously: do it now. Signing Time videos are the easiest way we’ve found.
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Learn more
A lot more. Browse the “Down syndrome” section of links on the right-hand side of this page — especially the DS Health link. You’ll be amazed at how little most people know about DS — especially doctors and other people who should know better. And you’ll need that knowledge.
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Reach out to others
You need help. Everyone does. The best help comes from other parents with kids with DS. Find your local group and get involved. The NDSS website is a good place to start. And reach out when you meet or see other people — especially other people with kids with DS.
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Fight the R-word
It’s a word that demeans our children. Even if it’s casually used, and not used in a way that’s directed toward you or your family, please step in and ask the person to stop using the word in that way. When used casually, its meaning is based on a fundamental comparative insult to people with special needs. Help stop it.
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Celebrate
Congratulations. You’ve just become a better person — and not just for your child. You are now a true activist, and you’re making the world a much better place. Celebrate.
3 Responses to “What To Do When You Have a Kid With Down Syndrome”
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Good advice – well said. You might want to include grandparents in there somewhere. We want to do all we can to help when we can. We can start with the things on the list – thanks for the reminder.
As always, amazingly put Sean! I am constantly reminded about how much I have to celebrate with Ava in my life. She makes me, Sean, Reid and everyone else in her life a better person. Here’s to exciting new horizons ahead.
My son Cyrus was born 19 years ago. I was a confused and devastated 22 year old mother who had been expecting a “normal” baby. A well meaning person said it would be okay, spouting that having a child with Downs was like planning a trip to Germany, but when you exit the plane you find yourself in Holland. At the time I found that explanation not helpful at all. Looking back, I wish I had enjoyed my son more as he grew up, rather than hoping and expecting more of him and myself. Now, I simply enjoy his presence, compassion, and humor. I would never trade him for that “normal” baby I had expected. We worked hard with early childhood intervention classes, graduating to special eductation preschool at three years old. Now,Cyrus is in high school, and I have to stop wondering about the if only’s. If only I had read to him more, tried harder,spent more time, done all the right things, then he would be more normal, less mentally retarded, and more functional. My advice is to avoid that kind of thinking and just enjoy your new baby with Downs. Yes work hard, spend lots of time, but realize every child has a potential and accept them just as you accept your “normal” children in their abilities. My son is a beautiful human being with remarkable qualities. He is empathetic, kind, easy going, and funny. He knows how to live in the momment. That is what he is teaching me to do.