"High-Functioning"

I had a BIG debate the other day on the DSTNI list. The DOCTOR that runs the list actually told a worried new mom that "kids with DS are not on a par with normal kids". WHAT!? I was so angry to hear that.

Inevitably, I mentioned the things Ciarra can do that ARE "on a par" (While pointing out what "on par" means...it means equal, as valuable) People take offense everytime someone points out the things that they themeselves will say are "high-functioning" in the next sentence. It is difficult to give hope to a new mom being told that her baby CANT or WONT do things and not give specific examples. And then be seen as a braggart. Sometimes, I feel ostracized with the DS community, because I am "not allowed" to brag about the things I am excited about. I have learned to not talk so much about the things she is doing and focus instead on ability in general.

I absolutely fight for the rights of all kids with DS, but if we are going to be fair, as a community, we need to start seeing ourselves as we seek out "high-functioning" role models. We ALL want to share every high-functioning story we read, from Karen Gaffney to Sujeet & Carrie. They give us hope. I was saying in my back and forth with the doc, basically, if we are going to, as a community, continue to point out gleefully the ones who are highly successful and put them on pedestals, then we better be prepared to have some intellectual honesty regarding our OWN issues. We cant tell the world that it doesnt matter until we, ourselves, stop making it seem that the "cream of the crop" are somehow DIFFERENT than our OWN kids. Yes, we aspire for the best for them all. Yes, some will find their ways more easily. YES, we need those role models. Any of us that have ever blogged or written about or posted a story about a person who has done something the rest of the world would be surprised by are JUST as responsible for this.

I talk about my daughter's ability. If she were working on potty training at 9, you can bet I would be bragging when she got that, too. Im happy for her when she gets stuff, we all are. I dont much care what things she is doing, just that she is doing them. Im proud of her. I have heard the term high-functioning SO many times. I have USED the term myself. You will NEVER catch me saying or thinking "low-functioning", because it is abhorrant. But in the eyes of the world, we use labels. Ciarra is "high-functioning" and thats ok with me. I know that gives people hope sometimes. But it doesnt mean that I or ANY other person sees her as more valuable. She is NOT. Cindy and I have had this discussion so many times, and I wish more people could see it without all the crap that inevitably comes along. The truth of my child is what it is, the truth of HER child is what it is. They bring different things to the table, they are valuable in SO many ways. Ciarra might be the one doing the talking someday, but you can bet your butt she will be thinking about the gentleness and heroics of the Noahs that dont have the same voice. ALL of our kids bring something to the table. In our rush to use the right words and not offend anyone, we are talking out both sides of our mouths, often. We CANNOT be so quick to point out the "superstars" and then chastise someone for wanting to see that in their own kid. If we dont admit that we hope and pray for it for them, we are full of poop. If we make people who do talk about the things their kids do, even when those things are deemed "high-functioning" then we have our own prejudices to deal with. I hope this makes any sense at all. It is very hard to articulate well.

All I want is to not feel like somehow we dont fit the DS mold. My dd has DS, regardless of where on the spectrum she falls, her abilities and disabilities should not define her. There is no magic *I* performed to make my daughter do the things she does. There was no magic pill, no therapy, she was born with a certain ability to dodge some of the big DS issues. It was not me trying harder that made her this way. Although, I completely believe it was in large part that I didnt hold her back and believed in her that those God-given abilities shined through. She was lucky, her heart healed itself. No gastro issues. Poor vision and chronic sinus crap, but otherwise very healthy. I dont use the term "lucky" because that implies otheres werent lucky. She is who she is.

I think if we are going to talk about accepting people for who they are, then that means the ones on both ends of the spectrum. I love my friends kids who are less able to make their way in the world. Not because of DS, but because they are people. I dont define them by what they can do. I am thrilled mine can do what she does. But it doesnt define her. It just hurts when people discount it in so many ways, either by saying it cant be done or she must have a "mild case" of DS. She is precious to me for so many reasons, not the least of which is the many ways she teaches me about my own prejudices. Blanket statements dont apply to ANY of our kids. All I want is for my own child to be seen for who she is, and that is not dictated by her number of chromosomes.