Monday, July 21, 2008

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.



10 comments:

datri said...

Your know Kayla is on the other end of the DS spectrum. And I've never considered Ciarra anything more (or less) than an inspiration.

Michelle said...

you know, it is such a fine line, though. I want to inspire others, I really want people to have hope for their kids. But I dont want to set Ciarra up on a pedestal and pretend she isnt a real child with her own issues. And sometimes, I feel so overwhelmingly like Im supposed to just "be happy" because she does very well, like complaining about anything is a slap in God's own face.
I recognize that people want to have someone inspire them, and I also know that I looked for the same things when my own was small. I just feel almost as though there is an "us" vs "them" thing...like "DS superstar" is said with a roll of the eyes and a discounting of HOW hard she has to work. I want to be able to tell people about my child without being seen as on some high horse. I feel like "high functioning" is not that different than "low functioing" in terms of terminology, they are terms about ability, not about who a child IS. I wouldnt dream of saying someone was "low functioning", they just are whoever they are. High functioning has turned into "DS superstar" and it is a very hurtful term to me.
Thanks for responding, and for the kindness. I want Ciarra to be an inspiration because she is happy, has a good life, and enjoys living, not because of how smart she is or how well she reads. I try hard to present that side of her life, and I pray that the inspiration you feel is at least in part due to who she is as a person and not tied solely to her cognitive abilities. Sigh...this is hard to put into words. But thank you for hearing me and joining the conversation, so I didnt have to sit here thinking to myself. (((hugs)))

Kristy Colvin said...

Michelle,
I think you expressed what so many of us parents of children with mosaic Down syndrome feel. Thank you so much for writing your feelings out. It was what so many of us try to say, but often the words just come out wrong!
Kristy
http://www.mosaicmoments.today.com

whatever to us said...

hugs gf, you and I have talked about this many times.... thanks for saying it so eloquently.

Hite Family said...

Chelle-
You know I dont think it matters how far advanced our kids are and on what subjects, real life skills, academics and etc because at the end of the day they still have DS.
Ciarra is ahead of Ashlie on a lot of things but I have never looked at Ciarra differntly than I look at Ashlie.
It would be like you and me, Im sure we both learn things at a different pace but at the end of the day we are who we are.
Love ya girlfriend and I have always looked at Ciarra and yourself as inspiration.

Anonymous said...

Michelle,

I am about 2 years behind you with my daughter Sophia, 8. We need to talk! This is the first year I have started to feel rumblings of what's to come. The IEP team seems to be preparing me by saying things like "typically, 3rd grade is the turning point when kids don't benefit from an inclusive setting". To that, I say whatever! A few weeks after Sophia was born, when I learned that she would in fact survive her heart defect, I told myself "one day at a time". That expression has served me well since then. Occasionally I fret about the future but for the most part, I really try to enjoy her today. She is also "high-functioning", stubborn, independent, confident. I have high expectations for her and then again, I have no expectations. Other DS parents ask me all of the time why she speaks so well. Like me, most parents have their kids in speech at 3 months old with varying results. Like any child, Sophia has her God-given talents and she excels in certain areas and not in others. I am glad that other DS parents turn to me for support but I don't have the answers because I am in the same boat! And maybe I look like I have the answers because Sophia is social and speaks well but most days I feel like a complete loser because she's not not on a vitamin supplement regiment, I don't work on daily flashcards with her, I don't attend conferences on DS (although I would like to). I am on a board (www.gigisplayhouse.org) and my kids are my life. We go about our life and everyone treats us like a typical family. People do tell me that I am always smiling and I make everything look easy. What's the alternative? It's not always easy and why add to that by being grumpy or negative or complaining? Sophia is an amazing child-just like every child. There are parents out there who know exactly how you feel. I've always treated Sophia the same and I expect that is why people treat our family the same. Some days I don't want to be the same, I want a shoulder to cry on. I think that's okay.

Jessica said...

Michelle,

I am about 2 years behind you with my daughter Sophia, 8. We need to talk! This is the first year I have started to feel rumblings of what's to come. The IEP team seems to be preparing me by saying things like "typically, 3rd grade is the turning point when kids don't benefit from an inclusive setting". To that, I say whatever! A few weeks after Sophia was born, when I learned that she would in fact survive her heart defect, I told myself "one day at a time". That expression has served me well since then. Occasionally I fret about the future but for the most part, I really try to enjoy her today. She is also "high-functioning", stubborn, independent, confident. I have high expectations for her and then again, I have no expectations. Other DS parents ask me all of the time why she speaks so well. Like me, most parents have their kids in speech at 3 months old with varying results. Like any child, Sophia has her God-given talents and she excels in certain areas and not in others. I am glad that other DS parents turn to me for support but I don't have the answers because I am in the same boat! And maybe I look like I have the answers because Sophia is social and speaks well but most days I feel like a complete loser because she's not not on a vitamin supplement regiment, I don't work on daily flashcards with her, I don't attend conferences on DS (although I would like to). I am on a board (www.gigisplayhouse.org) and my kids are my life. We go about our life and everyone treats us like a typical family. People do tell me that I am always smiling and I make everything look easy. What's the alternative? It's not always easy and why add to that by being grumpy or negative or complaining? Sophia is an amazing child-just like every child. There are parents out there who know exactly how you feel. I've always treated Sophia the same and I expect that is why people treat our family the same. Some days I don't want to be the same, I want a shoulder to cry on. I think that's okay.

Jessica

Cynthia said...

I have a 7 yo son with Ds. He started out being called "high functioning" and I have watched that change as the years go on, He has had more challenges thrown in his path and slipped further behind his peers. Kids with Ds all have challenges to face. I have heard some parents talk as if they think their child who had many, many challenges was "forgotten" during the NDSC conference and so many high achievers were celebrated. To some extent, it did resonate with me. However, we all come in different shapes, sizes, and abilities. People who have challenges with any disability will work harder just to get through a day than we can ever imagine. We need to acknowledge that. Our culture always picks the best of the best to show off, and then call what they have achieved natural ability, rather than hard work. I'm not sure that will ever change.

Shannon @ Gabi's World said...

I have never even heard the label "DS Superstar!" What is that supposed to mean?

I used to be guilty of calling Gabi "high functioning." I probably did it more because I was led to believe she was by her therapists and her genetics doc. Of course, Gabi was progressing pretty rapidly in those days. Things took a halting skid to no progress or very little and found out that sometimes we count our chickens before their hatched.

Well said and hugs!

Kim said...

I hear what you are saying. Charlie is only 2.5, so who really knows what 'function level' he is on. But, he does a lot of stuff. He is an amazing guy. I think, really, he is quite average, but I feel people are surprised at all the stuff he can do, and then they think 'he must be and exception. Surely not all kids with DS are as cute and clever as he.' I make a point at telling people he is just and average guy with DS, I think out of being defensive. Okay, now I don't even know what I'm saying. But I understand what you said.
--K