Posts Tagged ‘Down syndrome’

21
Feb

Water hoses, cowgirl boots, and the “R” word….

   Posted by: Ashley Moreno    in Down syndrome, Parenting

I have no use for political correctness.

Nothing shuts down constructive dialogue faster than the fear of inadvertently saying something that will be deemed “politically incorrect” by the listener. Political correctness is the enemy of meaningful discourse.

Don’t get me wrong—I don’t condone the use of racial epithets or shock-jock language. Not because I care about some notion of political correctness, but because I’d like to think I’m a nice person who cares about the feelings of others.

Johnny Knoxville doesn’t care much for political correctness, either. I know this because he says so in the clip I’m about to share with you (don’t scroll ahead—geez, I promise I’m not going to ramble on this time. Be patient, and we’ll get there when we get there).

See, I’m not a big fan of the word “retarded.” But I realize that most people who don’t have a child with Down syndrome in their life aren’t up on the latest vernacular (which is, by the way, some combination of either of the words “cognitive” or “intellectual”, paired with either of the words “challenge” or “disability”).

If a well-meaning individual strikes up a conversation with me about the fact that their little neighbor was retarded, and she was just the sweetest thing, I’m not going to get offended. If someone asks me what the most challenging thing about raising a retarded child is, I will remain unflapped. I’ll tell you why: because we live in a country where people with Down syndrome have only recently—in the past few decades—been afforded the opportunity to live their lives outside of an institution, and in which over 90% of parents who find out pre-natally that their child will be born with Down syndrome choose to abort. The most dangerous thing we as parents can do is to discourage people from talking about Down syndrome. And the fastest way to discourage them is to make them memorize the verbage that comes to us so easily.

I had to have this conversation with Ethan when Mason was just a baby. The neighbor’s kid said to him, “Your brother’s retarded.” Being only 6 years old, E didn’t possess the verbal skills necessary to engage this child in a meaningful dialogue. What he did possess was a water hose.  But it gave me a great opportunity to engage the kid’s mother in meaningful dialogue, seeing as how when he went home soaking wet, he left out the part about why Ethan sprayed him down.

So if you want to talk to me about Down syndrome, don’t ever worry that you’re going to use the wrong words. I don’t care—it’s way more important to me that the conversation takes place.

However, I feel much differently about the use of the “R” word as a slur.  Let me elucidate….

When you say, “That’s so retarded!”  I hear, “That’s so Mason.”   Likewise, when you say “What a retard,” I hear, “What a Mason.” 

Do you get it?

See, I know that the overwhelming majority of people don’t mean to be hurtful when they use the “R” word. Well, I’m pretty sure they mean to be hurtful to whomever it is they’re talking about, but they don’t intend to slam the entire intellectually disabled community. I get that. I totally do.

But now that you know how it makes me feel for you to basically say “That’s the kind of stupid thing a person with Down syndrome would do,” now that you know that it hurts me—not offends me, but cuts me to my core—for you to equate my son’s genetic condition with stupidity, let me ask you something: do you care?

I promised you some Johnny Knoxville, and I am a woman of my word, so here it is. And by the way, anybody ever calls my son a “retard,” and for the next few days they’re going to be answering the question, “How the hell’d you get a bootprint on your forehead?”

Watch the clip HERE (as in, actually click on these words, because I am not blog-savvy enough to figure out how to actually link the clip with the little thumbnail pic down there. Nothin’ but a glorified typist, that’s what I am…).

Tags: , , , , , , , ,

11 Comments
7
Feb

Pride and—-no, just pride….

   Posted by: Ashley Moreno    in Writer's Corner, random funny stuff

I love wordsmithery, shopping for words in the rich aisles of the English language, meshing and moshing and molding them together to paint pictures vernacular and spectacular. And like Ozymandius and his ill-fated stone monument to greatness, I dream that my words will live on when I’m gone. Because I’m all delusional and stuff, too….

About a week ago, I penned a quick blurb and posted it as my Facebook status. A few minutes later, a friend commented and copied it for her status. It’s an awesome feeling, knowing that something you wrote resonated with a fellow traveller on this journey. Another reposted, then another, and soon I was seeing people comment on their postings, saying things like “I like this—I’m going to copy and post it, too!”

Somewhere along the way, as I saw my words posted and reposted, taking on a life of their own, reaching people I never could have reached on my own, a thought crossed my mind.

“I’m not getting the credit for this.”

Admitting that makes me cringe.  While a whole community bound together by nothing more than a thread that runs through an extra chromosome in our children saw truth and spread truth, I started pouting that my by-line wasn’t attached to it. Nevermind the fact that somewhere in the wild word, someone might read those words and be changed by them. That person would never realize that it was MY words that changed them.

I related this story to my family today at the lunch table. I asked them if they could identify the sin behind my emotions, and before I had the “-n” tacked on to the end of “si-” Ethan blurted out “PRIDE!” 

Ah, there it was, obvious even to a 10 year old. Pride, we learned this past week, is the root of all contention. The elevation of self-interest over common good. Not to say that my words were such an enormous, world changing contribution to the common good. But boy, did I act as if they were. God’s gift to Facebook.

I’m not going to post the post-in-question here. Believe me, I want to. I toyed with the idea of starting out this post with the quote-in-question. But I’m not going to. Call it an exercise in exorcising the spirit of pride.

A few days later, it happened again. Only this time, the quote was something I’d written a few months back, recirculating among the Facebook community. And here it was, being posted and commented on and reposted. I felt that familiar monster clawing through into my consciousness. And I stopped myself. What does it matter whether anyone knows whose words those are? Isn’t it wonderful that I am part of this community of wonderful people who strive to empower each other in the fight for truth? Isn’t the far greater issue that someone might read one of these posts and see Down syndrome in a different, more truthful light?

It’s been a week of growing for me, to be sure. (And not just because I’ve fallen off of my diet and eaten an entire loaf of homemade bread and 3 boxes of Triscuits and 1/2 a bottle of Shiraz this week. Tomorrow’s another day….)  I’m honored that someone saw promise and hope and truth in my words, and that rather than tossing them into the FB dust-bin that is the “older post” page, they shared them.  That is something real. It doesn’t matter whether I get any credit for it.

At least, not until I’m a published author with an agent and an editor and an option deal. Then I’m pretty sure it’ll be copyright infringement….

Tags: , , , , , , , ,

6 Comments
25
Jan

The cruelest birthday present….

   Posted by: Ashley Moreno    in Adoption, Down syndrome, Food Allergies

Mindy and Taya are beautiful, healthy little girls who happen to have Down syndrome. Within the next two weeks, both girls will celebrate their 4th birthdays.

Mason celebrated his 4th birthday last August. We took him to Chuck E. Cheese, which is the surest sign that a parent loves their child. I wouldn’t suffer through three hours with the Big Gray Rat for some kid I just liked okay.

In case you don’t know, Mason can’t tolerate corn in any form or amount. Makes him terribly sick. So I made corn-free cupcakes to celebrate the occasion. Sounds easy enough, right? I mean, when’s the last time you saw a cupcake recipe that called for a cup of corn? But corn is sneaky and subversive. Down right evil. Corn is found in vanilla extract, baking powder, and powdered sugar. It sneaks into the eggs and milk of corn-fed livestock.

Are you wondering how Mason liked his cupcakes?

That is The Daddy using his mad persuasion skills on the Mason-cupcake situation. It is also Mason using his mad resistance skills on The Daddy. Like so much of a mother’s work, all of my effort on the birthday cupcakes went unappreciated. He really dug the candles though, and the whole “hey, everybody’s singing to me!” thing. He enjoyed tearing the wrapping paper off boxes and then throwing the boxes onto the floor. And mostly, he loved running around and being a kid spending his birthday at Chuck E. Cheese.

Birthdays are awesome.

Unless you’re a Russian orphan with Down syndrome.

Mindy won’t have cake or presents when she turns 4. Nobody will sing “Happy Birthday,” she won’t puff out her cheeks trying to blow out her candles until her big brother or sister finally helps her out.  Instead of cards, she’ll get transfer papers. And instead of a trip to the pizza parlor, Mindy will take a one-way trip to a Russian mental intitution, where she will live out the rest of her short life in squalor, surrounded by the rest of the people that her society wants to forget even exist.

The morning after his 4th birthday, Mason woke up to the sound of his big sister beckoning him to come play with his new toys. Shortly after her 4th birthday, Taya will wake up to the shrieks of her desperate fellow inmates, groaning in misery. Mason got hugs and cuddles and wide-eyed comments of “My, you look older today Big Boy!” Taya will spend her entire day in a metal crib, without so much as a smile cast in her direction.

Don’t take my word for it….

Click here to watch the Today Show video of what life is like in one of these institutions. 

As I type this, Mindy has 5 days left. Taya has 11. Mere days until their lives go from pitiful to horrific. I pray that their forever families find them before it’s too late. And I pray that they won’t let finances stand in their way. Nearly all of the adoptive families I’ve met through Reece’s Rainbow had to raise the funds for their adoptions. Very few of us have the extra money sitting around.

Please, if your heart breaks for these precious children, if you cry for them, if you wish you could do something…

…do it.

Find out more about Mindy and the other angels of Reece’s Rainbow at the Reece’s Rainbow website And by all means—if you want more info, LEAVE A COMMENT! I read each and every comment, and I can hook you up!

Blog Widget by LinkWithin

Tags: , , , , , , , , , , , , ,

14 Comments
Back to top
Previous Entries