World Down Syndrome Day: Celebrating Special Lives
Today we honor those people born with three copies of their 21st chromosome, one more than the rest of us, including Ursula Hennessey's daughter, Sarah Palin's son, and many more.
Those who know a Down Syndrome person -- as a parent, or friend, or cousin -- can't imagine life without them. But about 90% of mothers whose fetus is found positive for Down Syndrome choose to abort their babies. Some studies say that percentage is slightly higher. This Examiner article highlights fears that new, simpler gene testing for Down Syndrome will result in even more abortions.
George Will wrote an amazing piece on this for Newsweek in 2007, about his son, Jon, who has DS, and it has lost no relevance. Here's an excerpt:
But what is antiseptically called "screening" for Down syndrome is, much more often than not, a search-and-destroy mission: At least 85 percent of pregnancies in which Down syndrome is diagnosed are ended by abortions.
Jon, a sweet-tempered man, was born the year before Roe v. Wade inaugurated this era of the casual destruction of pre-born babies. And he was born just as prenatal genetic tests were becoming routine. Since then, it has become routine to abort babies like Jon because they are like Jon. Without this combination of diagnostic advances and moral regression, there would be more people like Jon, and the world would be a sweeter place.
Jon was born at the end of the era in which institutionalization of the retarded was considered morally acceptable, but in what was still an era of gross ignorance: In the first year of Jon's life, a network-television hospital drama featured a doctor telling parents of a Down syndrome newborn that their child would probably never be toilet-trained. But ignorance lingers. There are doctors who still falsely counsel parents that a Down syndrome person will never read, write or count change. Such doctors should not try to get between Jon and his USA Today sports section.In 1972, the odds were heavily against Jon's living as long as he already has lived. Just 25 years ago, the life expectancy of Down syndrome people was 25. Today, because of better health care, better mental stimulation in schools and homes, and better community acceptance, their life expectancy is 56.
Jon has a disability, but he also has some things most men would like to have—season tickets for Nationals and Orioles baseball, Redskins football, Capitals hockey and Georgetown University basketball. He gets to and from games (and to his work three days a week for the Nationals at RFK Stadium) by himself, taking public transportation to and from his apartment.
Jon experiences life's three elemental enjoyments—loving, being loved and ESPN. For Jon, as for most normal American males, the rest of life is details.
In my second pregnancy, I'm reminded how routine genetic testing is, no matter your age (I'm 26). My doctor was a bit shocked that I declined all genetic testing last month. My previous OBGYN in Michigan, a devout Catholic, had a wonderfully, frank perspective: he told me, and all his patients, unless you are willing to consider an abortion, there's no need to have any of this testing.
My hope is that pregnant moms, despite the callous view of science, will embrace the possibility of a Down Syndrome baby, and the deep joys that child will bring.
(Thanks to member Talleyrand's post and Ursula's comment that made me aware of this day!)
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Comments :
Mar '11
Re: World Down Syndrome Day: Celebrating Special Lives
I think you meant Sarah Palin's son. Thanks for this post!
Feb '11
Re: World Down Syndrome Day: Celebrating Special Lives
Yes, that is what I meant -- thank you, Gus! Just fixed it.
May '10
Re: World Down Syndrome Day: Celebrating Special Lives
Thanks Lauren. Good stuff!
Feb '11
Re: World Down Syndrome Day: Celebrating Special Lives
A few more links:
Reece's Rainbow promotes international adoption of children with Down Syndrome, a resource for parents looking to adopt, or to give a DS baby up for adoption.
This link gives some statistics on abortion and DS.
And, this non-profit, plus15, is matching donations today 3:1 for the improvement of learning, memory, and speech of Down Syndrome children.
Re: World Down Syndrome Day: Celebrating Special Lives
Thanks, Lauren! That piece by George Will is one of our favorites.
I have recently read something about Down syndrome & parenting that I find particularly apt: It is the gift you don't think you want until you have it. It is, truly, a gift. I've written about my acceptance of the gift here.
I applaud you, Lauren, for rejecting testing. It takes a brave person to stand up to some types of medical folks. I wish I'd had more like your OB in Michigan. Actually, my OB was quite good, but wave after wave of specialists seemed disappointed in our choice to keep our daughter. We were grieving over the news (learned at 17 weeks pregnant), and, despite the certainty of our choice, it was very painful to have "professionals" try to counsel us away from life.
Finally, I would add that for us, knowing the diagnosis before birth was a positive. We grieved deeply, but were able to come to place of acceptance and even joy by her birth. Moms with children with Ds think differently about this; some preferred learning at birth, others felt stronger with the knowledge heading into delivery.
May '10
Re: World Down Syndrome Day: Celebrating Special Lives
Do they look any different as babies? Do their eyes track just as well? Are they just as vocal? I'm just wondering if learning that your child has DS at birth would really stick in your mind if the condition wasn't visually apparent.
It didn't occur to me until I read this that I have always associated DS with kids only. I had never considered what adults with DS are like. Thanks.
Jan '11
Re: World Down Syndrome Day: Celebrating Special Lives
There is also such a thing as a false positive for DS in genetic testing. I know a woman who was told her baby would be born with DS and the baby was not.
Jun '10
Re: World Down Syndrome Day: Celebrating Special Lives
I have the privilege of having two Down Syndrome adults in our Sunday school class. Brenda just turned 60. David is 51. Both sets of parents were uneasy about them in class but it has been a gift — to me, the other teachers, and the children far more than Brenda and David.
One Sunday morning, Brenda came in late. David got up to give her his chair since there weren't at the table. He sat down by the wall. One of the 4th graders got up, moved a chair and said, "David, you can sit by me." Lesson learned.
Re: World Down Syndrome Day: Celebrating Special Lives
There are a number of signs or "issues" at birth. It is often, but not always, visually apparent in the face, but there are several other physical markers. There are also much, much higher rates of heart problems and early childhood cancers (which are usually quite treatable). My daughter, while healthy in all the "large" ways, has 6-7 medical issues which will probably have to be treated for life. Children w/ Ds meet a few developmental milestones on time, but are almost always delayed by months or even many years. Cognitive delays are generally moderate, but can be mild or severe. It is definitely a shock to learn of the diagnosis and, often, a scary/terrible one. Hard to handle at any point, but especially challenging to digest after just having had a baby, which is physically and emotionally draining in itself.
Edited on Mar 21, 2011 at 9:27amRe: World Down Syndrome Day: Celebrating Special Lives
Absolutely. Likewise, many moms I know did all the testing and believed their baby would be "fine" only to learn at birth that their baby had Down syndrome. Testing is not reliable. It's really a minefield, this testing stuff. I don't feel like I have an answer. As I said, the testing was helpful for us, psychologically, but it could have been misleading or wrong. It was also not "necessary" for us to do it, and in that way, could be seen as a waste of resources. I think Lauren's got the right approach. You pray or hope for the best, but steel yourself to all possibilities. Testing can just muck it all up.
Jan '11
Re: World Down Syndrome Day: Celebrating Special Lives
Thank you for posting this Lauren.
My older brother, Ben, 26, has DS.
He also has a rich and satisfying life. As I type this, he is probably on his way home from the elementary school where he works, assisting in lunch and carrying a whistle at recess, or at practice for one of the local sports teams that have given him an honorary coaching position. Unbeknownst to him, he has a ticket for Wrestlemania 27, which will probably make his year. He spends his off hours working on Word-Find puzzles, and besting me in Wii bowling. He has been a standout in the Special Olympics, recently taking up power-lifiting.
Beyond his activities, Ben displays more soulful, loving depth than most people without Down's ever manage to muster. When I was injured in a car wreck months back, he told me late one night that he "should have been in the car with me," and then, to the best of his ability, asked me why God allows suffering, and why he was born with Down's. Ben knows love and joy, and shares it with all who are blessed to know him.
And NOBODY gives better hugs.
Jan '11
Re: World Down Syndrome Day: Celebrating Special Lives
So, that was my first post, and once I saw my handle up there, I decided I hated it. FreeHarbinger, what does that even mean? It must have been late at night when I signed up. So I changed it to my real name a minute later, which is apparently not retroactive. I guess the whole thin veil of anonymity just wasn't for me.
Re: World Down Syndrome Day: Celebrating Special Lives
Welcome, John! I enjoyed your story. I have seen comments on blogs about how siblings with special needs have harmed them or weighed them down irreparably. It seems you are truly pleased to have Ben as part of your life. I hope that's the case for my other two children as they get older.
And, if you are still hoping to be a tad anonymous, I think the goggles (glasses?) are a wise choice.
Jun '10
Re: World Down Syndrome Day: Celebrating Special Lives
I have the honor to be a neighbor and friend of Mike Ramjoue, a young man with Down Syndrome. God never created a sweeter, kinder, or purer person than Mike.
Jan '11
Re: World Down Syndrome Day: Celebrating Special Lives
I read your blog post about Magdalena, and all I can feel for you is excitement. Even more, I am thankful that Magdalena was born into a family that will provide her with love and life in full.
My mother was the director of a school for special needs children here in the Atlanta area throughout much of my childhood, as she was galvanized into action by my brother's birth. To this day she and my father avail themselves as cousel to expecting parents of children with DS, to assist them in processing the kind of feelings and fears you experienced early on. Thus, I've been able to witness numerous examples of the joy and fulfillment that these children have and bring into the world.
When I marry, I hope my wife will be courageous enough to adopt a baby with Down's, as there are agencies devoted to such adoptions. I know, at least as a sibling, the challenges, but I also know how heavily outweighed such challenges are by the blessings of having a family member who is so pure of heart and free to love others and themselves as those with Down's are.
Re: World Down Syndrome Day: Celebrating Special Lives
Welcome, John! Even though it's a double-welcome.
I agree with Ursula -- the goggles are enough -- but I'm glad you're here, whatever name you choose. (My only criterion for names on Ricochet is that they be easy to spell....)
Mar '11
Re: World Down Syndrome Day: Celebrating Special Lives
As a Pediatrician and the uncle of a 20 year old young man named Jonathan who has DS, I want to echo that I encourage many patients to forgo the genetic testing for the same reasons as given in the original post; IF you are not going to abort they serve no purpose. life is more important than mental ability, and my family cannot imagine life without Johnny around, especially my daughter, born on the exact same day.
Re: World Down Syndrome Day: Celebrating Special Lives
I think another welcome is in order! Welcome, DocStu! I'm glad there are doctors like you around.
Feb '11
Re: World Down Syndrome Day: Celebrating Special Lives
What hopeful, life-affirming posts! Thank you all! I would also like to add that parents who find themselves with a poor prenatal diagnosis may be uplifted by looking at this website: http://benotafraid.net/, which tells the story of many families who chose life for their little ones. The heartaches and heartbreaks are many, but the joys outweigh them all.