Friday, February 19, 2010

Why are we afraid of Down syndrome?

I posted this on the amnio board on today.

Of all the things that can go wrong with a child - cerebral palsy, cancer, emotional issues, teenage rebellion (drug use), etc. - why is it that Down syndrome seems to strike the most fear in our hearts?

I'm not being judgmental...I was right there, too. When Eon was born (odds were 1:20, declined amnio) and we were told within minutes of his birth that he had Ds, I was terrified! It felt like the air had been sucked from the room. The fear abated when I finally held him and looked into his sweet face, but I won't deny that it was my first response.

I think back to that, now that I know my fears were completely unfounded, and wonder if I would've been as afraid if it had been something else. I like to think that I would've been, but I don't know.

I don't think we're really afraid of actual Down syndrome, but rather the image of Ds that we have in our heads...the adult with Ds in our childhood neighborhood with the institutional hair cut and the garbled speech...or the kid with Down syndrome at our school coming out of his special ed class at lunch who always tried to hug us...or our great Aunt Sue's memory of her little "mongoloid" brother who was a burden on the family until he died at 25.

The reality is that Down syndrome doesn't look like that anymore. Early intervention and medical advances have changed the face of Down syndrome.

First, people with Down syndrome don't suffer. This is a group that embraces life and expects us to do the same. In the words of American Idol contestant Maddy Curtis (who has 4 brothers with Ds), "They see the world in color and we just see it in black and white."

Second, they are not a burden. Babies who are born with Ds today are expected to live independently as adults with only minor support. We are seeing young adults work meaningful jobs, attend college, and even marry.

Third, they are more alike than different. Kids with Ds will learn to do all the things typical kids do...walk, talk, read, attend school, fight with siblings, just may take them longer. They can be fully involved in sports, music, dance, karate, etc.

There are some health issues associated with T21. Most are minor and easily corrected and not every kid will have them. It's absolutely possible to have a perfectly healthy baby who also has Down syndrome. Heart issues are scary, but often don't need surgery and if they do, the surgery is considered routine and has a high success rate.

If we have other kids, we're often worried over how Ds will affect them. I know I did. Good news! Siblings of those with Ds have been shown to have higher levels of empathy, compassion, and tolerance than siblings of typical kids. Aren't those qualities we want our kids to have? Studies have also shown that parents of kids with Ds are actually more likely to stay married than those without.

It's not a cake walk. Parenting seldom is. All kids have challenges. With six kids, I know this better than anyone. With Ds, at least we get advance notice of what some of them may be.


  1. Wonderful, wonderful post, Tara. Beautifully and succinctly said.

  2. What a GREAT GREAT post! This needs to be in every newspaper...magazine...internet board out there!

  3. YAY Tara! What a GREAT post! Still praying for grace.......

  4. This is a great post, Tara, and so true. Every word of it. Thanks for sharing your thoughts.

  5. Gosh, Tara---you summed up everything I think most of us have felt, and you did it so beautifully! Awesome post!

  6. Wonderfully written and so true.

  7. I just saw the link to this post on fb. Not sure how I missed it. It is beautiful! This needs ot be on every baby/expecting board. When Morgan was almost 1 year old I was talking to a girl whose husband had a brother with Ds. I asked her if it made him to nervous to get pregnant one day. Realizing what can go wrong. She said both of them would be just fine with a baby with Ds. "After all it was the cadillac of disabilities."

    It put everything into perspective for me. She was right. It really is the cadillac--Morgan can walk, talk, feed herself, potty train, read, write, play, jump, ride a bike, etc. She can do EVERYTHING my other kids are doing. Not sure what I feared so much those first few months.

  8. First time visiting your blog (saw the link on Facebook) and had to comment to say I love this post! Great perspective!

  9. I have no idea how to leave my name, but am on BBC with you...Cory, Rivers mom... and RIGHT ON!!! Glad you arrived in a happy place! :-) It is a wonderful place to be, and I love to hear this view promoted.:-)I always say the same thing about kids in general. Never know who your gonna get,it goes with the territory of being a parent. And River is just who God had in mind for us! I'll take him! :-)

  10. Well said! I have always felt that way, about all children having challenges, at least we have a little warning, and can be prepared. With all the troubles that teens are getting into these days, I think I would rather deal with a kid with DS, because I think it will be easier than a pregnant meth addict. I know that's not PC to say, but it's how I feel! Thanks for the post!

    Tracy McCain
    Morenci, AZ

  11. My thoughts, exactly! Thanks for sharing!

  12. Fabulous Tara - thanks so much for lending some perspective!

  13. My thoughts exactly! My son Keith (now 6 months old) was born with Down syndrome. We opted to have the amnio and found out during the pregnancy. My first initial fear of terror was because I did not know what DS was. You are correct, people are afraid of DS. The stereo-types that you see or hear about (described above) were the first thoughts through my brain as well. Then I thought of the children that participate in the Special Olympics, pictured their occomplishments and I had to smile. One of the toughest things was telling friends and family that my "baby to be" was going to have Down Syndrome. A few people actually freaked out, but most of them were very supportive. The only thing that upset me was when someone said "Sorry to hear about your son's condition." I would politely say "Thank you, but there is nothing to be sorry about!" Keith has had some major medical issues including open heart surgery. 4 surgeries later and 6 month old, he doing fantastic! If anyone wants to read some good books, get "Roadmap to Holland" "Gifts" and "A different Kind of Perfect" I read these books while pregnant and it helped prepare me Keith's birth and medical issues. Just remember that all children deserve to be loved and accepted into our society. It doesn't matter if they are black, while, purple, short, tall, male, female, have two thumbs, no arms, or no legs. All Children are Beautiful miracles.