Grumpy

Nathan hates it when his sister cries and will often cry too. Often he seems really mad that she is making that noise. Tonight at dinner when she bumped her foot and cried, he loudly said "no hurt, no hurt!" Later, Cianna slipped getting into the bathtub. She was more scared than hurt but was crying. As I was trying to figure out whether she was hurt, she stopped crying and asked me "you please close the door? I no want my brother be grumpy." Awwww, that's just sweet.

Testing

When I was pregnant with Cianna, I forewent any prenatal testing since screening was inaccurate and diagnostic testing was invasive and with some small risk to the fetus. I wrote about that decision on this blog 3 years ago.

Fast forward to today, I am pregnant with baby #3 and the world of prenatal testing looks very different! I was given a noninvasive but highly accurate (99%) blood screening test at 11 weeks and already know that I'm having a boy without Down syndrome or trisomies 13 or 18. The change in the landscape of early diagnosis in 3 short years is amazing. I wonder what kinds of information will be available to pregnant women by the time Cianna is old enough to have children.

I know that many parents of children with disabilities fear that this type of testing will lead to earlier identification and thus to termination of affected fetuses, and this is a valid concern. Many of us probably could not have imagined raising and loving kids with Down syndrome until it happened to us, and maybe more people will choose to terminate based on the results of these tests. 

The rapidly changing world of prenatal testing is amazing and more than a little frightening. Parents can now learn sex in the first trimester without any invasive procedure and the possibility to choose whether to continue a pregnancy based on that knowledge certainly exists. 

For me, the testing was about more knowledge and ability to prepare if we did have a second child with Down syndrome. And of course as an added bonus, we got to find out that #3 is a boy and it's time to hand down all of the dresses and little pink outfits.

But there exists the troubling possibility of people using this technology to make decisions that are, to me, unethical.

One thing I have learned as a parent is that you just don't have control over everything about your child. Your actions and your words shape your children but don't control them. We may think we have control, choosing to have only children with the "right" chromosomes, but we cannot at this point predict which kids will struggle with substance abuse, anorexia, ADHD, or even (perhaps especially) autism. Even the knowledge and choices this technology brings us only gives us the illusion of control over the destinies of our children.

And the idea of selecting only "perfect" children brings to mind eugenics and of course the treatment of the disabled in Nazi Germany. It seems a slippery slope once we decide that one group of people isn't fit enough for life.  I think we all benefit from the diversity in our society, from learning about and accepting each other's differences, including the differences of those with an extra chromosome.

Challenger Baseball

Nathan is playing Challenger Baseball, which is a special needs team through Little League. The players are paired with older, typically developing buddies who help them with whatever they need help with, whether that's knowing which way to go around the bases or staying in the dugout when they are waiting for their turn at bat. Nathan seems to be enjoying it.

toast

Nathan and I have been working on learning to make toast. I got a little video of him putting the toast in the toaster oven, although he was so busy singing ("Roll Away Your Stone" by Mumford and Sons) that he was a bit distracted!

a little Cianna

Here are a couple of little Cianna videos with some singing and talking.