Wednesday, March 21, 2012

World Down Syndrome Day 2012

March 21 is World Down Syndrome Day...3/21, to signify the three copies of the 21st chromosome that those with Down syndrome carry.
We will wear yellow, and we will sit with our DSAG at a park for a picnic. It is our "special day," and we will celebrate.

With a heavy heart, I will bring my beautiful, charming, funny (and smarter than anyone knows) fifteen month old son to be around others of all ages who are like him in chromosome number, possibly in visage, and maybe or maybe not in character.

My heart will hopefully not be heavy while watching these people with Down syndrome enjoying what is forecast to be a gorgeous day. Rather, my heart will ache because of those who have no horse in this race, but feel the need to express an opinion about the ethics of raising, or not raising, a child with Down syndrome. I will see beautiful babies, handsome boys and pretty girls who have been reduced to "mistakes" and "burdens" and "less than.". It's disappointing to think they may not receive the respect of their peers, teachers, authority figures, government leaders.

My heart will be heavy because of a bill on the docket in AZ (already law in some other states) that "would allow physicians to lie to a pregnant woman about her baby if it might prevent an abortion.". In the discussion of this bill, Down syndrome has come up often, hot on the heels of the wrongful birth suit in Oregon that awarded parents $2.9 million because they would have aborted their daughter if their prenatal testing hadn't been falsely negative.

I have one sentence to sum up my feelings about this: "When it comes to Down Syndrome, THE TRUTH will prevent the abortions."

In our so-called enlightened world, we have special education, social supports, early intervention. What we don't have is a pervasive and generalized belief that people with Down syndrome have the ability to make meaningful contributions to the world.

We have many physicians and genetic counselors who don't present the truth about Down syndrome. They present inaccurate statistics about potential health problems, making expectant parents feel as though their child will inevitably face a lifetime of poor health and feebleness. They imply that a child with Down syndrome will hurt siblings, cause marriages to fail, lead a sad life, detract from the education of "able" students in the classroom. Some people with DS do have health problems, but medical advancements have made them far more manageable than ever before. Most of those "social consequences," it turns out, are frighteningly mistaken for truth.

This misinformation is given to expectant parents facing prenatal diagnosis of DS, and some was even given to us when our screening ultrasound showed soft markers. As I have mentioned here previously, our OB tried to bully us into invasive prenatal testing with this "information.". It is also given to parents while they hold their precious newborns.

My feelings on abortion aside, it is legal in our country and that is not likely to change. What we need is fair, honest, and ACCURATE information to be given to expectant (and postpartum) parents, rather than agenda-driven information from either camp of the abortion issue. If more people knew that raising a child with Down syndrome was not the burden they envisioned based on misinformation, I firmly believe fewer would have abortions.

If accurate information was given to the lay public without ties to the DS community, we might make some headway there, too. BY FAR, the worst thing about raising a child with DS is the rest of the world. Seeing or hearing your child reduced to a stereotype, knowing that your child is many times more likely to be restrained/secluded/physically disciplined at school, reading about group homes being driven out of neighborhoods...this is infinitely worse than the thought of your child not winning the Nobel prize.

On this World Down Syndrome Day, the World needs to know that people with Down syndrome deserve respect and equality in all stages of life...just as those without it do.