Archive for the ‘Down syndrome’ Category

23
Nov

The whole story, officer?

   Posted by: Ashley Moreno

Sirens are generally not a good thing.

Around here, a siren usually means I forgot that I was heating oil on the stove while I ran to put the towels in the dryer…and check facebook…and read a few pages of Good Housekeeping. Luckily, it hasn’t ever gotten further than the smoke alarm sirens– the ones that the mostly-useless-electricians put in that just make a lot of noise, not the ones from the security company that immediately call the fire department. The fact that the immediately-call-the-fire-department ones have never gone off greatly decreases my feeling of fire-safetyishness, truth be told.

But today, the siren meant something different. Today, the siren meant that I had rolled through the stop sign on my little, backwoods, rural, middle-of-nowhere, don’t-nobody-else-stop-neither road, and that said rolling had not gone unnoticed.

Sometimes, a siren going off around here means that the kids, history buffs that they are, have re-enacted the Battle of the Alamo, using bubble wrap to mimic the sound of gunfire. I don’t know about gunfire, but our alarm system thinks bubble wrap sounds an awful lot like breaking glass. And our glass-break detector actually does immediately call the police department.

Of course, because we live in a little, backwoods, rural, middle-of-nowhere kind of place, it takes the police 30 minutes to arrive at our front door to investigate whether we have been chopped up into small, unidentifiable pieces by serial killers. There are never any police cars on patrol where we live (if you happen to be a crazed criminal, you should know that we have two vicious attack dogs and one very aggressive llama, and we are armed with awesome guns, and we are trained in the art of fujitsu. Unless fujitsu is some sort of camera, in which case we are trained in something else that will allow us to separate important parts of your body from one another using only our toes. Who needs police when you can disembowel people with your toes?).

In the entire 6 years I have lived here, I have seen no more 5 police cars. Or maybe I’ve seen one police car, but I’ve seen it 5 different times. In any event, encounters with law enforcement are sufficiently rare as to have instilled a sense of confidence in the denizens of our particular nowheresville: specifically, people don’t stop at stop signs. Some of them don’t even slow down.

Myself, I’m a stopper. Not only that, I have been known to point and wag my finger at the non-stoppers, or at least at the drive-right-through-at-35-mph-ers.  And I can do that in all my well-deserved self-righteousness, because I am a stopper.

Or so I thought….

Yesterday afternoon, any delusions I held regarding my standing as a keeper-of-the-code-as-it-applies-to-stopping-for-a-full-three-second-count-at-all-stop-signs were shattered.

See, when I woke up yesterday, I had every intention of leaving the house to take Mason to go get his bloodwork done first thing in the morning. I don’t know why it takes us 4 hours to get out of the house in the morning. So we left the house on our way to the lab at the crack of 11:20.

At about 11:35, I remembered that the road was under construction. It was the orange-and-white-striped barricades that  jogged my memory. You would think I would have remembered sooner—miles and miles sooner, as in, before-it-was-too-late-to-take-an-alternate-route sooner, especially in light of the fact that these same barricades sucked a sock up my vacuum cleaner on the way to my girls’-night-out viewing of White Christmas on the big screen with one of my besties only a few nights earlier.

Even with the diversion, we arrived at the lab-o-trauma at 11:42, a full 18 minutes before they close for lunch. Which would have been a tremendous victory, had there not been a sign declaring “We’ve Moved!” on the door.

Mason really doesn’t like being strapped into a car seat. And the only thing more injurious to his happy mood than being buckled in is having to be buckled in again after having finally enjoyed a brief taste of freedom.

Four kids back in the car, buckled, one frustrated round of, “What do you mean, you’re not buckled? What have you been doing for the last 3 minutes?”, and we’re on our way to the lab-o-trauma’s new location, which happens to be smack-dab in the middle of the construction zone we’d just detoured around. Which probably explains why I drove right by it, then had to make a rather awkward T-intersection U-turn. It might also explain why we found ourselves driving on the wrong side of the pylons, into the path of an oncoming 18-wheeler. Luckily, Riley notices things like oncoming 18-wheelers that might escape the notice of someone who’s squinting out the window, mumbling “Where is it? It’s gotta be one of these buildings….”

In spite of our little unscheduled adventure, we arrived at 11:54, a full 6 minutes before they close for lunch. I’m not sure what time the other 15 people who were already in the waiting room arrived, but they did not look amused to see our rowdy party-of-five enter.

That place should really hire a second phlebotomist.

Mason doesn’t sit. Did you know that? It’s probably pretty apparent from most of my posts.

So, for the next hour-and-five-minutes, I did my best to keep the 35-pound-ferret corralled on a 2-person bench. I read magazines (Luckily, Better Homes and Gardens has lots of pictures of dogs and cats this month), I played several hundred rounds of “Kiss-me-right-here….you missed! Again?”, and sang Somewhere over the Rainbow, Fly Me To The Moon, and the ABC song…repeatedly. I let Mason practice his hairdressing skills (until he attempted to remove large sections of hair using his thumb and forefinger), and offered my body up as a giant jungle-gym. And I did it with a smile on my face, and while admonishing certain other family members to keep the peace, stop kicking each other, and get their own gum.

Finally, at 1:00, the poor-phlebotomist-who-worked-through-her-entire-lunch-hour called us back to the torture chamber. Now, Mason has an uncanny memory, but maybe the new office threw him. He recognized her as someone he liked, and he immediately turned on the charm. Even as she tied the blue-rubber band around his upper arm, he smiled and flirted. It wasn’t until the needle physically pierced his skin that the look of recognition swept across his face.  But he’s a tough one, and even as she was putting on the bandage and apologizing profusely, he was doing his best to smile at her through his tears.

By the time we stepped across the lab threshold, Mason was fully recovered. Mommy, on the other hand, could think of little other than a session with Dr. Merl Ot. And I still had Wail-Mart, SuperTorture, and KroGrrr on my to-do list.

Every once in a while, a rare glimmer of sanity peeks through the otherwise impenetrable wall of my incompetence. This was such a time. Rather than drag all four children around town to run errands, I drove 20 minutes home and dropped them off to The Hubby, armed with all the sympathy-rousing-patheticatude I could muster, then proceeded to make the 20 minute drive back to town.

It was shortly into my proceeding that I heard the siren.

Now, if you know me, you no doubt know that I can’t do things in any way that could be deemed ordinary. It’s not that I don’t, as if I’m striving for some sort of zenith (or nadir– depends on your perspective I guess…) of eccentricity. It’s that I can’t.

So it may come as no surprise to you to hear that I was pulled over not by a police car, or a sherriff, or even a county constable…but, by a Texas Wildlife Officer.

The answer to your question is, “Yes, evidently they can.”

Since it is already November twenty-somethingth and I have yet to do an “I’m thankful for” post, let me take this opportunity to say that I am thankful that the Texas Wildlife Officer let me go with a verbal warning.

I will close with a dramatic re-enactment of the incident, which may or may not offer a glimpse of why the Officer didn’t detain me to write a ticket:

Me: Hello, Officer.

Texas Wildlife Officer: Ma’am, I stopped you today because you ran that stop sign back there. And you didn’t just run it, you ran it fast. Is there any particular reason you did that, ma’am? Anything going on that would have caused you to not just run that stop sign, but to run it as fast as you did?”

Me: Well, officer, it all started because I had to take my 5-year old to get bloodwork done….

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.

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