Sunday, March 22, 2009

Down Syndrome is NOT “What She Is”

This is a bit late, but I anyway want to post something for “down syndrome Awareness Day”, March 21st, (3-21: 3 copies of the 21st chromosome)
The debate over “would I change her if I could” has not left my mind. While this ride through “Holland” has enriched my life in numerous ways, and while I value those with Down syndrome, I am still puzzxled by those who would not change the condition if they could. Many write that “Down syndrome is what she is….”
WHAT was THAT?!!?

My daughter is affected by Down syndrome. Very much so.

But I can NEVER imagine saying that Down syndrome is “what she is”!
Ricki is a pest.
Ricki is funny.
Ricki can be damn right smart when she wants to be.
Ricki is a natural at dancing and movement.
Ricki loves good food.
Ricki enjoys people.
Ricki hates hard work.
Ricki can meet a challenge and tackle it.
Ricki thinks her mom is dumb (judging by how she tries to get away with hiding stuff behind her back.)
Ricki is many many things. But much much more than “Down syndrome”.

(PS. I am not meaning to attack whoever wrote like this. But as a mother of an older daughter, it is so clear to me that my daughter's personality overshadows her Down syndrome.)


TUC said...

1/47th... huh, when you put it that way it seems such a small part of what influences who our children are. Thank you for your seasoned perspective.

Cheryl said...

Thank you! This post is wonderful! You are so right.

Poppasan said...

I completely get where you're coming from. We had someone in a restaurant see our son, come up to us and tell us what a delight their Down's boy is (which was cool), and how they wouldn't change a thing. My wife says: I would sell everything and live on the street if it would make Liam not have this. And so would I.

Tamara said...

I totally agree. I've always on the other side of that debate. I believe I personally have gained and grown from having a child with Down syndrome; however, it definitely limits his choices in life, so for him, I'd take it away. That said, a lot of people with Down syndrome and other disabilities disagree ... :-)

Terri said...

Funny, I see what you mean, and I see things differently too. My daughter opened my eyes to the fact that there is a great variety in the ways of being human. And where I used to think that the plan was that everyone would be "normal." I now think that was actually never the plan. It seems like some form of disability-from birth or acquired through life is more the rule than the exception from my vantage point now...

Nowadays I think it isn't Down syndrome that limits my daughter's choices, it's a society that sees the way I used to, so sees no need to make itself accessible.

My daughter is much more than her diagnosis and she has Down syndrome. That society sees her through stereotyping eyes is their deficit, not hers. I think she is here as she is for a reason--a good reason, so I wouldn't change her.

I would (and do) help her in any way I can, but not change her... Does that make sense?

rickismom said...

Terri, I agree with you that a lot of what our children do not accomplish is because of society's attitudes... BUT I feel that the Down syndrome also adds its limitations. When I see that she does not understand something despite repeated attempts,and that the amount of time spent to learn certain things is WAY beyond that amount of energy that a "normal" student needs to invest.... it means that she will often have to choose between her struggling to understand certain fine points , or spending that time learning life skills and just enjoying life. Which means, ultimately, that she will encounter MANY situations that she can not handle on her own. And even things which she has learned, in slightly different circumstances, may not apply, and even be dangerous. So how could I let her, for example, raise a child with no outside help and supervision?
Maybe you will counter that society should give that help. I suspect in certain situations that may be so, but, realistically, society is limited in its resources and WILL NOT do everything.And the simple fact is thatr if she did not have Down syndrome, her life would be that much easier.
When a person has a physical ailment, like toe-ing in... or an illness, like cancer.... they and there family grow from the experience, and often believe that it is all for "a reason". Yet we all go running to the doctor. Why should Down syndrome be any different?

Terri said...

Interesting point.