Up With Downs

Interesting article in the NYT today: Prenatal Test Puts Down Syndrome in Hard Focus. Totally brought back memories of my own pregnancy, and the discussions preceeding it.

As someone who didn't feel equipped to parent at all, the prospect of parenting a disabled child left me shaking with fear. Before I agreed to try getting pregnant, Al and I talked about all the possible outcomes we could think of, and how we would react to each one. I wanted to make sure we were on the same page before we made what for me was an incredible leap of faith. One of the decisions we made was that we'd terminate the pregnancy if testing revealed Downs syndrome.

Fast-forward about 8 or 9 months, to when I was roughly 3 months pregnant. I still remember the day—I think it was after the amniocentesis but before we'd gotten the results—when we were at the mall, and we passed a parent with a Downs child on the escalator. That child was so beautiful. Functional. Happy. I squeezed Al's and hand and said, "I don't care if it's Downs. I think I could parent a Downs baby." Al said, "I was thinking the same thing."

Was I relieved that the Beaner was healthy and did not have an extra chromosome? YOU BETCHA. Would I judge anyone who terminated a pregnancy because of a Downs diagnosis? NEVER. But I also don't think I'll ever forget that little girl on the escalator. Somehow I get the feeling that the world is a better place with her in it.

Posted by Lori in parenthood at 9:55 AM on May 9, 2007

Comments

The one that really kills me is "legally mandated inclusion in public schools." I agree that all kids should be able to have access to appropriate education, but right now our school department is staggering under a load of Special Ed. students, more and more each year. We're legally required to teach them, but that doesn't mean that we receive enough money to do it. As we cut teachers and as class sizes rise for the rest of our kids, I see that most of the new teaching job openings are in Special Ed.

Of course everyone should have the choice of whether or not to raise a Downs child (or a child with some other disability). As individuals and as a society, we need to think seriously about how to support that population, though, because right now it's not sustainable.

Posted by: Valerie at May 9, 2007 10:30 AM

I totally agree with you here. I do wonder, however, with the Downs population dwindling in the U.S., where are all these Special Ed. kids coming from? From other diagnoses, presumably. (It does seem that there's been a simultaneous rise in the incidence of autism and other disorders on that spectrum.) I also wonder whether some parents are taking advantage of some of the services offered to children with demonstrated learning disabilities. There was another article in the NYT a few months back about parents who fight to have their kids diagnosed with ADHD or other conditions just so they'll get 1:1 attention, all the time in the world to finish tests and assignments, etc. Dudes, that costs MONEY -- and in the public realm, that means higher taxes.

I guess one thing I didn't articulate when I said I thought I could raise a Downs child is that I knew we were also in a *financial* position to do so. (For me the greater leap was an emotional one, but without the financial safety net, I couldn't have made the leap at all.) If a Downs child had been our fate and we *hadn't* been financially prepared for that... oy.

You're so right that we need to make some decisions about how to support and care for the members of our society who are not 100% equipped to do so themselves. I'd also like to see those who *can* care for themselves pull more of their own weight. How can we hope to have enough for those who really need it if those who don't are standing in line for handouts, too? Ack, thorny.

Posted by: Lori at May 9, 2007 11:02 AM

Choosing to have a retarded child is a moral atrocity. There's no way to get around the fact that Down syndrome causes suffering in everyone involved. The parents who support bringing more people burdened with this illness into the world only want to extend their and their children's suffering to everyone else. They should be named for what they are - evil.

Every child should be loved and valued - but a fetus is not a child until he or she is born - and what kind of perverted monster do you have to be to want your children to suffer their entire life? Only the religious dogma behind the hypocritical "culture of life" is capable of sinking people to this level.

Posted by: HeroicLife at May 10, 2007 12:02 AM

Wow, that was pretty hateful -- not to mention judgemental -- HeroicLife. Let's just say I don't agree (and that I don't consider myself part of the hypocritical "culture of life" to which you refer).

Posted by: Lori at May 10, 2007 8:37 AM

I have a cousin who made the difficult decision to terminate a pregnancy once the amnio revealed that her daughter-to-be had a severe heart abnormality, as well as Down's and a bunch of other things. The doctors didn't think the child would live past birth.

She went on to have two "healthy" boys, but one was later diagnosed with "sensory integration disorder," which in my opinion is part of the whole plethora of diagnoses the include OCD, AD(H)D, and the various autistic spectrum designations.

I have many mixed feelings about Special Ed, the seeming "epidemics" of various learning/processing disorders, and how parents, teachers, and society chose to handle these differences. Sometimes it is parents coddling their kids and wanting "special accommodations," and other times it is just a matter of wanting a little understanding because of some quirks.

Some kids really do need a lot of assistance. It is tough to know where to draw the line sometimes. And it is even harder to get the parents, teachers, and administrators all on the same page because of the various overwhelming (temporal, financial, emotional) responsibilities that fall to each.

Whether such differences are a burden, a gift, or a little of each depends on the parents involved and the time of day!

Posted by: Karianna at May 21, 2007 8:11 PM

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