Thursday, October 18, 2012

{31 for 21} Aware.

When I think about Down syndrome awareness, I tend to think about the facts about Down syndrome.  Down syndrome is caused by having three copies of the 21st chromosome, instead of just two.... Down syndrome is present from conception.... One in 691 babies is born with Down syndrome....

But you either already know that or can use Google all by yourself.

Today, I'm focusing on the things I wish people knew about Down syndrome.  I didn't include things like "People with Down syndrome have value," because if you didn't believe that, you wouldn't be reading this blog.  The ideas from this list came from my own experiences, both positive and negative.

1) Ellie is emotionally at or near her chronological age.  Because Ellie is so small and not walking, strangers often treat her as much younger.  I've noticed that many people with Down syndrome look younger than their age, perhaps something to do with the facial features more common with that extra 21st chromosome.  Either way, I appreciate when people with Down syndrome, whether toddlers or teenagers or adults, are treated like others their age.  I know the same is true of the adults with Down syndrome I've met.  I don't want Ellie to get a "free pass" for being younger, because I want her to behave appropriately.  She may need extra help and reminders, but I don't want her to be babied.

2) Please use positive language.  The casual use of the word "r-tarded" hurts not only my feelings and the feelings of people with Down syndrome, but it suggests that "bad" and "cognitive disability" are the same thing.  Please don't say it.  And please correct others.  When you see funny little pictures with the word "r-tarded" in the caption, please don't repin, repost, Facebook share or retweet.  They're not funny.

3) Learning might be slower, but it still happens.  Ellie requires a lot more explicit teaching than her friends without Down syndrome, but she still learns.  Her speech takes longer, her gross motor skills take longer, her fine motor skills take longer.  But wow, we celebrate accomplishments, and I hope our friends continue to celebrate alongside us.  Ellie will learn to walk... eventually.  She's been crawling for ten months.  She's learning to talk, to use a fork, to listen to her parents.  (Okay, that last one I made up.  She's not a very good listener yet!)

4) If you have kids, teach them the lessons above.

As always, I am so grateful for our friends and for the way they treat Ellie (and the rest of our family).
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1 comment:

  1. i agree about the r word. my daughter doesn't have down syndrome but she is developmentally delayed so it offends me when i hear people use the r word


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