Posts Tagged ‘intellectual disability’

23
Nov

Of mice and lawnmower men….

   Posted by: Ashley Moreno    in Down syndrome, Film, Literature

“Is that the guy that plays Hank in your book?”

We were watching LOST together—my 10 year-old moppy-headed boy and me. It was last season, when the Oceanic 6 returned to the island (I can’t keep seasons straight–5? 4? Heck, I can’t even tell you how old I am without subtracting 2 years from The Hubby’s age. Unless it’s that beautiful season between May 31 and July 11, when I get to be THREE years younger for the 41 most glorious days outside of Christmas).

Anyway, we were watching LOST, and it was a scene with Frank and…well, I’m not going to pretend I remember what scene it was. It’s immaterial anyway. The point of this is that Ethan was talking about Frank, played by Jeff Fahey.

image of Jeff Fahey in LOST, "Confirmed Dead" from Wikia entertainment

image of Jeff Fahey in LOST, "Confirmed Dead" from Wikia entertainment

Frank’s character was introduced a couple of seasons ago (3? 4?),. Now, if you’ve read the little blurb about my life (marriage, yada yada, Down syndrome, yada yada, llama), you’re no doubt wondering how I find time to watch tv. All I can say is I hope Mr. TiVo made himself a nice fortune, and is enjoying it on some island somewhere with one of those private striped cabana thingies and a valet to bring him fruity drinks whenever he wants.

 

Without TiVo, I’d never get to watch anything. Even with TiVo, it’s dicey. Is Biggest Loser over already? I’ve been TiVoing the whole season, haven’t watched a single episode. Finally gave up on Heroes, Survivor, The Amazing Race (sniff), pretty much everything except LOST.

To be completely honest (what, you think I’d lie?), I’m using the term “watch” in the loosest of all possible senses. See, me “watching” an episode of LOST goes something like this:

Me, talking to myself(oh, like you don’t), finger hovering over the fast-forward button : “Walking through the jungle…more jungle…talking!” At which point I switch from “fast forward” to “play,” then try to rewind back five seconds to catch the beginning of what they said, which is really frustrating because for some reason you can’t rewind back five seconds with TiVo, so I end up rewinding 15 seconds and watching the 10 seconds of walking through the jungle that I just fast forwarded through (okay, maybe Mr. TiVo doesn’t deserve the private cabana thingy until he fixes that little glitch). And usually I’m changing a diaper at the same time, because that’s the only time I can steal away to my room without being followed. 

So…diaper…jungle…TiVo…oh, yeah—Frank.

So, Frank’s character was introduced at the end of the season, during a moment when it just so happened that Mason had kicked the remote control off of the bed during a diaper change, so there was no fast-forwarding going on. I happened to glance up at the tv to see if the lack of dialogue was due to walking through the jungle (it wasn’t), and said to myself, “Hey, that’s Jeff Fahey.” And then Mason managed to get one foot free and haul it up over his head (there’s that ligament laxity again) and kick the box of wipies across the room, narrowly missing my face.

I had to save the rest of the episode for another day (that’s another thing about me “watching” a show: it takes a good 6 days for me to watch an entire 1-hour program). That night, I had a dream about…well, it’s kind of vague now, but there was this chick, and there was this shady secret agent type guy–who happened to be Jeff Fahey. You know that novel I’m writing (the one that’s THIS CLOSE to being finished, only I haven’t had time to work on it since starting the whole adoption thing? And yes, I realize I haven’t blogged about the adoption thing. Geez, like I need more pressure….)? Well, that’s kind of how it all started, with a 90 second dream.

And to answer Ethan’s question, yes. That’s the guy. And then it hit me that Ethan had never seen The Lawnmower Man. Yeah, I realize I’m kinda random. I’m assuming that fact didn’t totally blindside you. But it wasn’t so random at the time, because the kids had just found this old video that we bought back in the early 90s called “The Mind’s Eye.” It was a compilation of early (waaaay early) computer animation. Back in the day it was cutting edge. And it was about that same time that The Lawnmower Man came out. So see, everything ties together all nice and neat.

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“What’s Lawnmower Man?”

So I explained to Ethan that Lawnmower Man was about virtual reality, and that it was one of the first movies to use computer animation. Not to mention the fact that the main character (played by Jeff Fahey) is a man who happens to be intellectually disabled.

Ethan was intrigued at the prospect of seeing what passed for cutting edge back in my day, and having a brother with Down syndrome, he’s always up for the topic of intellectual disability. So I TiVo’d it (on one of the channels that edits out language and ‘nudery’). Once I was able to ignore Ethan’s ridicule (“THIS used to be high-tech?”), I realized that having a child with a cognitive disability gave me a different perspective on the movie this time around.

When I was in 5th grade, I read “Flowers for Algernon.” Amazing book, even as an 10 year-old.

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The “Algernon” of the title is a lab mouse who experiences a quantum leap in cognition following a breakthrough surgery. Subsequently, the title character–an intellectually disabled man named Charlie– undergoes this same surgery. Not only does it ”cure” his condition, but he becomes a genius. But Charlie isn’t prepared for his sudden change in IQ, and his story doesn’t end well.

Lawnmower Man follows a similar theme, only it’s a chemical cocktail developed by the military instead of surgery that ‘cures’ main character Jobe, plus it’s got some virtual reality, a chimpanzee instead of a mouse, and an abusive Hugo-esque (Hunchback of Notre Dame ring any bells?) priest who views Jobe’s disability as a curse thrown into the mix.

As the mother of an intellectually disabled child, I appreciated Fahey’s sensitive portrayal of a young man who takes great pride in his work, who loves his friends dearly, and who is painfully aware of the taunting of the town bully. His story ends better than Charlie’s, but only because you can pretty much break all the rules when you’re talking about virtual reality. And only if by “better,” you mean he gets to pretty much kill everyone who ever hurt him.

Both works show man’s desire to tinker with God’s creation, to “cure” what we see as imperfection. Charlie was perfectly happy as a janitor. Jobe was happy mowing lawns. Neither of their “cures” made them better people.

I read today that researchers think they have a “cure” for the cognitive delays associated with Down syndrome. The treatment has evidently shown promise in mice, and they’re hoping it will yield similar results in human subjects someday. Think of it: a “cure” for cognitive disability. A breakthrough treatment, and my Mason could be just as smart as any other kid on the block. Normal. Ordinary. And in the process, just maybe it would “cure” him of his unquenchable joy, his resilience, his steadfast persistence. Maybe when things didn’t go his way, instead of cocking his head to the side and flashing his trademark smile maybe he’d stomp his feet and pout and give up.

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At what cost, this “cure?” How do you extricate the “self” from cognition? How do you pull one thread from the rug without compromising the pattern? And what if you can’t? What part of the “self” do you kill in this quest for perfection?

I won’t vilify the parents who jump at the chance to increase their children’s IQs. I hope it works out better for their children than for Charlie and Jobe, I really do.

But I think I’ll pass. Last thing I need is an angry kid with a lawnmower….

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7
Sep

Be careful what you wish for….

   Posted by: Ashley Moreno    in Chaos, Down syndrome, Parenting

I still remember how scared I was when I found out Mason had Down syndrome.

It wasn’t the intellectual disability that haunted me; I wasn’t bothered by the fact that he might not excel at mathematics and foreign language. It wasn’t that he would look different or talk different. It wasn’t even that I worried about other kids being mean to him. They’d have 3 older siblings to contend with, after all.

No, my overwhelming worry was that Mason would be passive spectator and not a participant in the grand adventure of life, watching from a distance, not tuned in to the world around him.

I am happy–and somewhat exhausted–to report that my fears were completely unfounded.

As I write this, I have just gotten back from a walk with Mason. To be more accurate, from a walk-jump-run-fall-monster stomp-sit in the dirt-offer fingers to the neighbors’ dog for a good licking-fire hydrant discovery-gravel inspection-sit in the middle of the road-run the opposite direction when Mom says come here with Mason.

Incidentally, if there are parts of this post that seem inconsistent or that just don’t make complete sense, it is no doubt because Mason has just swiped my notebook and used my freshly penned page to mop up the excess wet pasta slime from his high chair tray. Lovely.

Back to today’s expedition. It started out as a little time on the porch swing after Mason got off the school bus. It would have been a relaxing proposition, except for the fact that he insisted that I sing an original little ditty I composed in his honor called “Swing, swing.” It goes like this: Up and down, high and low, that’s the way we like to go. (repeat) Swing, swing, a marvelous thing, oh how we love to swing. (repeat). I am not a student of music, but whatever that term is at the end of a stanza that indicates “repeat without end,” Mason thinks this song has one of those, because the minute I finish he yells “Again!”

After the 23rd refrain, I took a deep breath and closed my eyes to fortify myself for yet one more round. When I opened them, I caught a fleeting glimpse of Mason’s backside as he headed around the corner of the porch toward the driveway. Now, I should mention that most of the Mo’s have been sick this week, which means Mommy hasn’t had much sleep. Suddenly another refrain of “Swing, swing” didn’t sound so bad.

The caliche was already crunching under Mason’s hiking boots, so I had no choice but to pursue him. I tried to encourage him to stick to the paved road, but he immediately veered off into the high-grown grass along the neighbors fence, like he always does. We’re out in the country, so this isn’t a manicured parkway–it’s dirt and rock and stickers and ants. And stickers. Not those little burrs that are nothing more than organic velcro–no, these are evil, thorned, spawn-of-hell deviant stickers, the kind that have hooks and barbs when you look at them under a microscope (okay, the fact that they HAVE hooks and barbs isn’t dependent upon whether you’re looking at them under a microscope. But I’m tired. I haven’t slept. And reworking that sentence felt like it was going to take a lot more energy than I have at the moment, so we’re going to run with it and keep going).

First stop, the neighbors’ fence to greet Harley, their black lab. We have a perfectly good black lab of our own, who happened to be on our front porch–the front porch Mason recently abandoned in favor of coming to see THIS black lab. My older kids insist that this is a demon dog. I’ve always believed them, because he barks like a demon dog every time I walk down the road. So I rushed to the fence, hoping to beat Harley. He got to Mason first…and proceeded to lick every one of his pudgy little fingers through the mesh, tail wagging, ears flopping. Mason giggled the whole time.

We ambled right down the road onto the adjacent cul-de-sac (our neighborhood is shaped like the number “4.” Well, not the “4″ I just typed, but more the way you actually write it, where it’s open at the top. Anyway…), Mason told Harley goodbye, and we walked uneventfully to the leftmost edge of the ’4,’ then turned around to head home. I was elated at this point, because Mason’s idea of a walk is uni-directional, as in walking “away.” He is not into the return trip at all, and lets me know by thrashing and screaming. But this time he was actually okay with the about-face, which I took as a good sign. Because I’m an idiot like that.

About 15 feet into our back-the-way-we-came, Mason noticed the gravel at the edge of a driveway. Like the black lab, gravel also falls into the things-we-have-our-own-of category. But this was someone else’s gravel, exotic gravel. I tried to channel my “we’re-exploring-and-experiencing” mood as he sat down on the road–I really did–but it was hard. The sun had started peeking out through the clouds, playing mean games on my face with the humidity. I wiped off the sweat and bent to pick him up. Only Mason wasn’t exactly in a being-carried kinda mood. He informed me of this fact by stomping, screaming, and pinwheeling himself across the road.

Just before he threw himself to the ground, he noticed the out-of-service fire hydrant. You know boys and fire hydrants. No, he didn’t pee on it. That’s dogs and fire hydrants. But he did set to inspecting it. In detail. As if when he arrived home he would be called upon to create an exact clay model of it. Meanwhile that humidity is dripping out from under my hat and down my cheeks, and I’m wishing I could convince him to just let me carry him home.

“C’mon buddy, let’s go.”
“Nnnnnnnnnnnno.”
“Can I hold you?”
“No.”
“Look–it’s Harley! You want to go see Harley?”
“No. Nonononono. No.”
“You want some milk?”
“No.”
“Applesauce?”
“No. Nonononono. No.”
“Wanna go watch a show?”
“No.”
“If you don’t stand up, I’m going to carry you.”
“NO! NO! NNNNOOOO!”
“Well, I’m going home. Bye.”
“Bye.”
“I’m serious. I’m really going. See? I’m walking down the road. This is me, going home. See? I’m going.”
“Go.”
My bluff had been called. Dang, this kid’s good. I walked back, my mommy-tail between my legs.

Any mom who’s been on the job for very long knows there’s only one thing to do in this situation: cart the kid’s kicking-and-screaming booty home forcefully. Remember the whole ligament-laxity thing I told you about? (Clean up on aisle 6) Well, another implication of this condition is that a child with Down syndrome who does not want to be held is NOT going to be held. This kid can twist and torque and flip and writhe like that little weasel-ball they sell at the Cracker Barrel gift shop.

I tried anyway. And within seconds I was reminded that Mason had walked the whole way through the sticker patch. With each swipe of his feet, my forearms bore the brunt of those evil spikes.

Then, I saw it–my small, round, flourescent-yellow dimpled hope. Golf ball! See, Harley’s owner chips golf balls all the time. And this little stray baby was my ticket home.

“Look Mason! You wanna play catch?” Yeah, technically I intended to play fetch, but he didn’t need to know that. I tossed the ball down the road. After retrieving it, Mason sat down in the middle of the road and waited for me to do the same.

This would be so much easier if he would just let me carry him.

So I finally got him to stand up and showed him how this game was going to work. I threw the ball, he ran after the ball, I ran a further down the road so he could throw it to me, and all the way we’re making forward progress. Until the little yippy dogs came down a driveway toward us. It is a proven fact that 4 year olds cannot resist little yippy dogs.

Now, at the edge of the yippy dogs’ driveway was a toddler-sized pothole filled with muddy water from the storm the night before. If this were some predictable B-comedy, I’da said something like “Don’t step in that–” and then Mason would have tripped, falling right into the pothole, covering himself head-to-toe in mud.

Ummmm…..yeah….

He pulled himself out of the muck, wiped his muddy face with his muddier hand, stomped over to me with his mud-encrusted-sticker-covered boots, thrust his arms into the air and said:

“Mommy, HOLD ME!”

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