Stand Up

As a new parent to a baby with Down syndrome you learn fairly quickly that the world isn’t always the kindest place to raise kids. There are lots of things out there that hurt our feelings, and our children’s sense of worth.

This brings out the mama and papa bears in us and we become advocates and educators. We want the whole world to see our precious children through our loving eyes. That is why so many of us blog and make use of other social media.

And right now we are big news. We are working hard to eradicate painful insults by letting people know that it hurts and that it is unacceptable, and immature. The culture around us is rumbling with fallout from Rahm Emanuel’s highly publicized indiscretion. It is the right time to stand up and be heard.

Please head over to Oz Squad and sign the letter written to educate Sarah Palin on the best way to fight for our children. She has the speaking platform we need and we have the voices she can use.

Surprise

A while back I did a poll about when you found out your baby had Down syndrome. The results (way, way down the left column) indicated that around 60% of babies that come with extras come as an after delivery surprise.

There are lots of reasons for this. Maybe you didn’t care about prenatal testing... que sera sera... or maybe you did but something got missed. Doesn’t matter now. You have a wonderful new (or not so new :-) person in your life.

What does matter is that there are a lot of misconceptions about people with Ds and their parents. For one, there are some pregnancy/birth statistics that are skewed (and posted all over the internet). You who were delivered surprises can help to straighten that out (even if you didn't vote in my poll).

Please read the Oz Squad blog post, “What’s In a Number” and then, if you qualify, take the prenatal testing poll. Your participation is greatly appreciated.

Does She Really Look Like Me?

Dan, aka Captain Dan and OS Alpha, over at Down with Oz, Oz Squad, and DOWNTOWN has passed the Golden Advocate Award along to me. I am honored that he said such nice things about my blog (and managed to stick to just the positives ;-) Dan is a great writer, father, and advocate, and I am proud to be on his team (which you should join if you haven’t already.)

Not only was Dan kind enough to bestow an award on me, but he also customized it to personally represent me. Does she really look like me? Well, believe it or not, I am not actually that cute, lol. Thanks Dan, you’re the best!

I have to tell you, there are a lot of amazing blogs out there, like Living In Invisible Cities (one of our fancy friends) and Take a Walk on the Happy Side (home of my favorite identical twins). There are also some fantastic disability champions out there like The Accidental Advocate and Welcome to Illinois. So it was hard, really hard to decide what to do with this award.

After ruminating about it for a week or so, I've decided I am giving it to Lisa of Bridget’s Light. Lisa is a gifted writer with a creative streak and a powerful voice for our children. Go spend some time reading around her blog and you will agree. I am thankful that this mother of five makes the time to share her beautiful daughter Bridget as well as her valuable contributions to the ongoing public conversation about disability.

Visit Rejenerations, the home of the Golden Advocate Award, to grab the real version of it... the one without my goofy face on it. There you will also find the specifics about accepting this award and passing it along.

For David and His Disciples

I am a parent who chose to bring a child with Down syndrome into our family and into the world you and I share. I have read through your posts and comment threads and several like them and would like to respond to some of the ideas therein.

Technology and tests do not prevent Down syndrome. Ds happens at conception and at some point later, a test result shatters a woman’s heart. Why some women continue their pregnancies and carry their babies to term may be incomprehensible to you, but it isn’t to me.

I did not have my children in order to have my own intelligence and beauty reflected back at me. I do not plan to live vicariously through my children, nor do I need them to support me in my old age. I am not afraid of developmental delays, or of someone whose beauty is different than what our culture is programmed to desire. I don’t suffer from Münchausen syndrome, I don’t feel self-important, nor am I a religious masochist.

I chose to have children so that I could enjoy their company. All three of my children are a pleasure to be with, so they have all fulfilled my “parental needs.”

I am sorry if it bothers you that I didn’t see fit to kill my baby once I learned that the cells making up those little feet kicking at my insides all had an extra 21st chromosome.

I am also sorry if you are angry that some of your tax dollars are spent on giving my child with Ds the extra boost she needs to develop to her full potential (which is way higher than Rob seems to understand) There are lots of things I don’t like my tax dollars spent on either, but I accept that. I can give up a few Mocha Lattes to feed some 16 year old high-school drop-out’s perfectly developed welfare baby. Because, well you know, some unplanned pregnancies do result in live births.

My daughter with Down syndrome doesn’t suffer at all. And the only upcoming suffering she will probably face in her life is the ridicule and rejection of people like you. Might she get sick at some point? Yes, and you might too.

David, before you continue your campaign against parents letting their developmentally delayed children live, you should spend some time learning more about them. You seem to be convinced that only a specific set of “desirable” human traits can result in a “healthy, successful, productive” life. Having Down syndrome and being developmentally delayed doesn’t make you unhealthy, unsuccessful, or unproductive. Are some people with Ds unhealthy? Yes, they are. Are lots of people without Ds unhealthy, unsuccessful, and unproductive? Yes, they are.

Read this book, Common Threads: Celebrating Life with Down Syndrome, and see if knowledge about real people with Ds (lots of adults) doesn’t soften your stance just a bit.