Archive | March, 2014

She doesn’t look like a “Downs baby”

8 Mar

20140308-100021.jpgI have been waiting for the right time – a really long time – to write this post. I was waiting to go a week or a couple of weeks without hearing someone say this, then I would write the post, because I don’t want anyone at all to think this post is directed toward them. It absolutely is not.

But I could never wait to post this because I am told this soooo much. 99.9% of the time I know the intention of the person saying it is good. And I will actually sit there and have a conversation about it, so please don’t feel bad if you’ve said this to me. There has only been one time when it rubbed me the wrong way….I may talk about it later.

It’s just another thing to add to the list of comments that I probably said myself before I had a child with Down syndrome.

Drumroll please…..

“But she doesn’t look like she has Down syndrome?!”

I do not take offense to this (& most moms & dad’s probably don’t either), but I remember the first time it was said to me after Rosalie was born, it caught me off guard & I thought, “well, what’s that supposed to mean?” I’m proud of how Rosalie looks, whether she “looks” like she has Ds or not.

But then the second and third and forth times I heard it from well-meaning friends, I grew a little more and more uncomfortable with it.
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And here’s why. In our society, we are basically brainwashed into thinking that having a baby with beautiful almond shaped eyes, epicanthal folds (the skin fold of the upper eyelid covers the inner angle of the eye), a single palm crease and a flat nasal bridge (etc.) is undesirable.
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That’s why the abortion rate for prenatal diagnoses of Down syndrome is over 90%. So when someone says, “She doesn’t look like she has Down syndrome!” It feels like they are saying “Well, she doesn’t look undesirable!” And to that I could say thanks, but then that would imply that Rosalie’s other friends aren’t as good looking & trust me, Rosalie has some CUTIE PIE friends, from Valdosta & all over the US.

Am I rambling, or is this making sense?

Or, others may throw in, “she must not have such a severe case,” or “her ‘Downs’ must not be that bad.” Unfortunately, that’s just not how it works. One either has Trisomy 21, Down syndrome or not. Those who have Down syndrome are individuals, just like everyone else in the world. And thankfully, God made us all different and all in His image (Gen. 1:27).
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Rosalie is beautiful. I see the characteristics of Down syndrome when I see her and I absolutely adore that about her. Now I can spot a child with Ds from a mile away. I get so excited when I see a child or adult with Down syndrome in a Target ad, on Sesame Street, or on a tv show. I wish we could see more.

I truly think that Down syndrome is so beautiful. So please, if you think it may be paying a compliment to a mommy or daddy by telling them their child doesn’t look like they have Down syndrome, maybe just tell them their child is beautiful instead. That’s all that is needed. 🙂
20140308-100446.jpgRosalie has learned to wave bye bye!

End the “r” word for Rosalie!

5 Mar

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So today is March 5th, the day we Spread the Word to End the Word. The “r” word.
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I am guilty of using the r word. In high school and in college, I probably used it a lot to describe many people or situations. I am so ashamed to admit it now.

I began to work for Special Olympics Georgia in 2006 and I cut it out of my vocabulary, not just because I didn’t want to offend anyone in my job, but because I saw just how wrong and hurtful it was to use it. After I left my job at SOGA, I’m sure I let it slip every once in a while. I mean, what’s the harm? I didn’t mean it “that way.” (How many times have we as parents of children with Down syndrome heard that?)

Now that I am a parent of a child with Down syndrome, I absolutely hate the word. Every time I hear it, it’s like a slap in the face. I am great at playing it cool and being understanding, because at one time I DIDN’T have a child with an intellectual disability (ID) & so now that I do doesn’t mean I don’t make mistakes myself.
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But hearing the r-word is like a knife in the heart. And then I think about my beautiful sweet girl & her awesome friends, and I just can’t keep quiet. I have to say something. I don’t want to embarrass anyone, but I want people to stop using the word. And not just in front of me, but altogether!

When you use the r-word, you are comparing someone or something to my child & her friends in a negative way, plain and simple. And yes, you DID mean it that way.

Put yourself in the shoes of a parent of a child with an ID like Down syndrome. Just try so hard to imagine. You are out with friends at dinner and someone loudly says, “What a retard!” (Remember, your child has an ID.) How do you imagine you would react? Are you gonna laugh along or is your heart going to drop into your stomach as you try to catch your breath while you feel everyone’s eyes on you because YOU have a child who has an ID.
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Seriously, like the poster I’ve seen, there are a ZILLION other words you could use. I will buy you a thesaurus if you need to pick a new one, just stop using the R-word.

Rosalie and her friends thank you.
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