Tuesday, February 1, 2011

Ignorance. Pure ignorance.

I was in the store the other day and there was a mom who was obviously very frustrated with her 18ish month-old little guy.  He kept throwing his stuff out of the cart and “asking” for other things.

And it got me thinking.  I laugh when Piper does stuff like that.  Why?

Because it means that she’s just like any other one-and-a-half year old. 

When we first got her diagnosis, we went to worst-case scenario first.  I guess I had a desire to hope for the best, but prepare for the worst.  That way we could be “ready” for anything.  Problem is that the stereotype we hold as a society (and which I fully admit I also held at the time), I’m certain, is based on decades-old information, which is largely (often completely) out-dated and misinformed.  The abilities, and capabilities, of our kids is significantly under-appreciated and under-estimated.  I so, so wish that we could have seen Piper now back then.

Piper is, first and foremost, a kid.  A normal, run-of-the-mill, ornery, smiling, goofball of a child.  She gets in trouble, tests boundaries, makes decisions, manipulates, loves, gets her way, learns, makes jokes… 

Yes- Piper has an extra chromosome.  Yes- Piper does have some physical features that are common amongst her chromosomally-enhanced peers.  It does not mean, however, that:

  • She will be, or grow into, that stereotype formed during the decades when the institutionalization (and therefore complete lack of medical attention, stimulation, and education) of individuals with Ds was normal;
  • That the threshold of her abilities is innately less than her “typical” peers;
  • That we are disillusioned by our happiness or in our hopes and dreams for her;
  • or, worst of all, that she is a burden (I seriously hate even writing the word).

Where’s this all coming from?  Two things, really-

Sometimes I feel like people do the whole “Sure, Piper’s doing well, for a kid with Down syndrome”, and it really bugs me.  Piper does well for Piper

I hate the idea that she’s being underestimated.  I feel like most kids get to abide by the “innocent until proven guilty” theory- until there’s reason to think otherwise, they’re “normal”.  But I’m afraid that the burden of proof rests with Piper and the rest of the designer genes club.  And it sucks.  Really, truly sucks.  What kid should have to prove that they’re just a kid?

And that leads to the crux of the thing all together- I’m having a really hard time accepting the coming of a new blood test that, essentially, allows an expectant mother to know that her child has Down syndrome in the first trimester.  Why is this a bad thing?  Because it makes abortion a more viable option.

Furthermore, the company that has come out with the test says that they can save “good” babies by not making moms have amniocenteses, which could lead to a miscarriage of a “normal” baby.  I don’t think I have to explain why this ruffles my feathers.  We’re walking down a road where science is hoping to not have to worry about Ds kiddos.  They’re being seen as a second-class baby- one that no one should have the burden of having to raise.  And as more and more parents and physicians are subscribing to this theory, and the ideology becomes more pervasive, it’s making it harder and harder for our kids to break through the stereotypes. 

No one can say that Piper was ever, for one second, an unwanted baby.  She is one loved little girl.  Not out of sympathy, regret, or guilt.  But because she’s Piper.  I cannot fathom what life would be like without Piper, or what Piper would be like without that extra chromosome.  She’s our very own pint-sized wonder who is one of the most affectionate toddlers I’ve ever known, makes us laugh constantly (and loves it!), and surprises us every day. 

Life is tough- can’t you tell???


  1. Piper is certainly our teeny tiny bundle of joy! Grandpa and I couldn't possibly love her more than we do! Everyone loves Piper to bits! She is a blessing beyond measure!

  2. I hear ya loud and clear! It also seems like as a parent of a child with DS that we have to justify their existence as well when that would never be the case with a "normal" child. Many times I feel like I am defending her right to live and it's apparent that God wanted her here so why does that require any explanation at all! Love that little Piper, she is just way too cute for words, how are you feeling?

  3. Great post! I feel the same way about our kids being underestimated, even by the professionals who are assigned to "help them". My son has been sight reading since he was about 16-17 months old. His therapists absolutely did not believe me when I told them this at the time. They were completely stunned when I pulled out flash card after flash card & my son was able to sign each word for them. People seem to confuse a "developmental delay" with an inability to learn or lack of intelligence. My son has neither. Yes, he is speech delayed, but that doesn't mean that he isn't bright, people!! It simply means that it's going to take a little longer for him to say what's on his mind. It also doesn't mean that he doesn't like to laugh, play, or throw an occasional tantrum like any other two year old! Last summer, upon meeting my son for the first time, my uncle said, "Kim, he acts just like any other little kid". Exactly, Uncle Joe. Exactly....

  4. This was an excellent post! I too hate when people say Russell is doing great for a kid with Down syndrome...it gets under my skin EVERY time I hear it!! You said a lot of really great things in this post, loved it!
    Piper is adorable :)

  5. I agree and whole heartily understand what you are saying. My chiropractor assumed that Vada was a burden to me and I had to explain that she was anything but that. It's parent like you, who use their "voice" and educate others who will pave the path for our children and their futures. Our children will have a better future than the children you speak of from years ago because our children are loved and treated like human beings and we as their parents wont accept what society is comfortable in believing.