Archive for the ‘Down syndrome’ Category

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…).

 

Today has been hard….

I’ve decided that I’m just going to type this as it comes out, stream of consciousness style. You’re no doubt saying to yourself, “Gee, isn’t that how all your posts are, Ashley?”  But you have no idea how much editing and revising and crafting goes into one of my ordinary posts just to give it some vaporous semblance of readability.

I don’t have the wherewithall for that today. I’m just going to let it spill out, like warm Shiner on pavement, let it splash and foam and subside until it soaks in and is gone. (If you’re wondering what Shiner is, then you’re obviously not from Texas. Come visit; I’ll enlighten you).

Our social worker comes this weekend for our first homestudy visit. She will inspect my house, interview my family, and decide whether we are, in her opinion, fit and able to bring a couple of Eastern European orphans with Down syndrome into our home. Along with the homestudy is a scavenger-hunt list of items for us to gather up and present to the social worker: certified copies of birth certificates, our marriage license, sworn statements from our doctors that each member of our household might be expected to live to see an adopted child reach maturity (yeah, I thought that was a little morbid, too).

Assuming that we are found competent (snort. sorry…), there is the issue of finances. Our adoptions will cost about $26,000 each.   $52,000.  I get a little woozy every time I say that out loud. Actually, I got a little woozy typing it just now, for that matter. That’s a lot of money to raise.

We have a few fundraising events in the works. I am baking my almost-famous Key Lime Pies like crazy, selling them to sweet friends and family who are eager to be a part of our journey. But with life-and-death in the balance, we have to hustle to raise the money quickly.

Now, The Hubby and I have this automotive fantasy. It involves my first car, which is at this moment parked in my mother’s garage:  Sadie, a 1969 Cougar convertible. Red. 351. Sequential tail-lights. Rrrrrowww….  We’ve always planned to restore it one day. It will be our old-people car, the one that we’ll drive around town with the top down, letting our white hair blow in the breeze. He thinks I’ll let him drive. And I might. Once in a while.

A 1969 Cougar, from mustangandfords.com. Not MY Cougar, because all my pics are stowed away in boxes somewhere....

It’s a wonder I didn’t get myself killed driving that car around as a teenager. Man, she could haul like a scalded dog. I remember the adrenaline rush of pulling up to a stoplight next to some testosterone-infused JohnnyDangerous in a hot-rod of his own, revving the engine, inviting me to race. Nothing like being a 17 year-old girl, smokin’ some dude on Pioneer. Those were the days.

My father bought the car for my mother in 1975, with no consideration of the fact that it wasn’t practical for hauling two children, dry cleaning, and bags of groceries. He put it in her name, and when he left my junior year of high-school and mom needed me to have my own vehicle to get around town…well, Dad implored her not to let me drive it. It was too much car for a reckless teenager, he said. He said I’d end up totalling it, or worse. And mom said something like maybe-you-should-have-thought-of-that-before-you-left-me-on-my-own-to-raise-two-children-as-a-single-mother.

In the years after the divorce, that car became my connection to my father. Our relationship was often rocky. Not I-hate-you-you’re-ruining-my-life rocky, but the kind of rocky that happens when two people are too much alike to get along for extended periods of time. My mom used to say that when my father and I got into it, she could see laser beams extending from between our eyes. I have my father’s amber eyes, and she said that when the two of us were locked in battle, our matching glowers were too much for her, and she had to leave the room.

As I navigated the tricky sea of distance between the home he no longer shared with us and the home where I visited him a couple of times a month, it was the Cougar that gave me a sense of still belonging to him. I remember sitting in his garage as he replaced a CV joint, talking comfortably without the darkness of everything that had changed hanging over our heads.

I always thought I’d keep that car forever….

My father loved cars. Racing was his hobby: a Ford Fairlane when I was a baby (he told my mother it would make a great “family car.” The first thing he did when he got it home was rip out the back seat and install Hooker Headers); sleek, fiberglass-bodied European S-2000 class when I got older. He worked in auto fleet and leasing. A couple of years before he died, he personally went up against Lee Iacoca on a bid for the US Government…and won. 

As a celebration present, he bought himself a beautiful, blue-green Mazda RX-7, which I ran over in my driveway while he and The Hubby were at a NASCAR race. Backed my Nissan Pathfinder right up over the hood, coming to a stop inches from the windshield, taking both pop-up headlights out in the process. He passed away suddenly a month later. The last words I said to him in person before he died were, “I’m sorry I ran over your car, Dad.”

But even though he loved cars, he always said, “A car is just a metal box to get you where you need to go.”

Where I need to go right now is Russia.

A couple of years ago, my big-blue-Suburban refused to start in the parking lot of the Kinko’s where I’d just run copies of my manuscript (have I really been working on this novel for THAT long?).  A big, burly man in a pickup truck came along, gently berated a slightly-built good samaritan for his cheap “toy” jumper cables, and proceded to hook up his own behemoth, industrial cables under my hood. I commented that I felt a little out of sorts underneath this hood, that in my ’69 Cougar, I knew exactly where the best place to ground the negative was.

Turns out he had an old Cougar, too, that he’d restored himself. Furthermore, although we were in a neighboring city at the time, we lived in the same small town, just 5 minutes from eachother, and I had seen his Cougar out in front of his house.

Today, as I was driving around town to obtain two more of the items on my scavenger-hunt list, American Pie came on the radio. My dad and I used to sing along to that song, watching each others lips to see who would stumble on a line first. I was on my way to the bank, just a stone’s throw from the shop the Cougar guy owned. As I drove on, a Ford Fairlane pulled onto the road in front of me. It didn’t have the snazzy red-orange-and-yellow paintjob that Dad’s Thunderbolt sported after he quit pretending it was a family car and devoted it to weekend racing, but it was a Fairlane, a rare sight these days.

I started to cry.

God puts us where we need to be, and He puts people in our paths for a reason. And he hooked me up with a hot-rod mechanic who just happened to have rebuilt a Cougar and who just happened to live in my little small town. God has gone to great lengths so far in our adoption journey to put the cookies on the bottom shelf for me. 

All these years, I haven’t wanted to part with the Cougar because it was my father’s car. But now, I realize that it’s really my Father’s car. It’s only been on loan to me these 25 years. Time to give it back.

I cried while I was talking to The Cougar Guy. He said I can have AAA tow the car to his place sometime in the next couple of weeks, and he’ll give me an idea of how much we need to put into it to make it saleable. Funny thing is, I’m really okay with it. I’m excited about it. It’s bittersweet, but sweet nonetheless.

On the way home, I hit the CD button. Soolaimon. I remember my dad—-the impetus for my love of old Neil Diamond—- singing Soolaimon. Lord of my wants…God of my needs…Leading me on….  I will never listen to Soolaimon the same way again.

I’m glad it wasn’t queued to Crunchy Granola Suite….

If you want to know why it’s so urgent that we rescue these children, click HERE for a video clip of what life inside an Eastern European mental institution is like.

And if you want to know what’s going on in the lives of a couple of other crazy, hip bloggers like me, click HERE.

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!

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