labels labels labels

My daughter Ciarra is ten years old, and she happens to have Down syndrome.

Shocking, huh? Not to you, you all are likely here because you have children with DS, too. (And "all" is subjective, teehee) So, if you have a child with DS, how do you label them?

What, you mean you don't label them? I hear ya. I don't label mine, either, but there are plenty of people who do. Ciarra is one of "those" kids with DS, the..."high-functioning" type. Not my label, not my choice of descriptors. In fact, "high-functioning" has come to be a little bit hurtful to me. I rage internally against the term, it is just another way of setting us apart from one another. But...I have used it, too. Guilty.

I have talked about our lives together since she was born, when she hit her milestones more or less on pace, I celebrated. maybe too much? Maybe somehow I left the impression that she is different, not like other kids with DS. But, oh, she is. She really is. She has the same sorts of concerns, the same issues with her heart and upper respiratory stuff that so many of "our kids" have. She struggles to learn, but is feisty and determined, and doesn't quit easily. She has stubborn in triplicate, and it serves her well. She learns in the same way many kids with DS do, visually is best. She has the same types of speech delays and social issues to overcome. Her future is just as uncertain as any other, and perhaps more...being "high-functioning" means that peoples expectations of her are higher, and their willingness to help her are less.

"She's fine", "She understands, she just doesn't WANT to do it", "she will be OK, stop worrying". I have heard all of the above, and I cringe. Should I worry less because right now she is reading well enough to make it in a regular class? Does it matter that her math skills are just shy of abysmal? Does it matter that the friendships we so treasure take a lot of planning and work on my behalf?

DS works for us, it is not a huge impact on any of our lives, yet. But as Ciarra grows, so too does the gap between her and "typical". She may fit in that world, but gosh it is a lot of work for her, a constant struggle to keep up. I can only imagine that as her friends grow older, the time they have for her will lessen, that is reality, and I wont sugar coat it. We have been blessed with some incredible friendships and unwaivering support from this community. Ciarra is doing very well. But she still has DS, and she always will. High functioing doesnt take away the struggles, and it doesnt take away my need to feel like we belong..somewhere.

To read the words "high-functioning" or "DS superstar" are painful, to me. If she is a "DS superstar" does that mean others see her as a negative? Is she so different that she cant even be one of the gang here, in this world we create for our children? That is painful to imagine. And yet, I think people think it is easy, that somehow we dont have any struggles, that it might even be fun to be different...again...even more...in the community set apart by their differentness. No one asks me about her medical issues, the constant ENT battle we have fought for years. No one asks me how SHE is doing emotionally, did I make it seem that life is too easy? No one ever considers how painful it is to be viewed as the "DS superstar" and not just as a little girl.

She is JUST a little girl. She struggles hard to do as well as she does. And I struggle too, although I wont pretend our battles are any bigger than they are, they are not non-existant either. I have days when I wish things were different, but I have learned that people expect me to "consider myself lucky"...and I do. I promise I do. But I am not always strong, either. I sometimes feel sad, overwhelmed, angry. And God know I count my blessings, I know that DS is not even close to the end of the world. But please stop seeing us as different, we simply arent. No rose colored glasses, no guarantees of a future any brighter than any others. Just real life, the good and the bad. Ciarra has Down syndrome, too. And just once, I would like to say that it is painful to feel so different, in this community where its supposed to be ok. And to please understand that terms like "DS superstar" can be very painful to hear.