Most of you know that if there’s one thing I’m adamant about (yeah, I know–I’m adamant about lots of stuff. Keep your arms and legs inside the car at all times, and let’s go on a little ride, shall we?), it’s the fact that the chaos that follows Mason has very little to do with Down syndrome, and a whole lot to do with the fact that he’s just that kind of kid.

But from a practical standpoint, there are a few Down syndrome related issues that do impact our daily life. One of these is the low muscle tone/ligament laxity issue, technically termed “hypotonia.”

Often, prospective adoptive parents will ask questions about various conditions in order to be prepared with specific challenges the child might face. I realized that there are several things a parent needs to be aware of concerning the challenges posed by hypotonia. So I comprised (in no particular order) the following list:

A hypotonic child can put his leg straight up so that his foot is in his big sister’s face while riding in the car seat, and he can just leave it there with no effort on his part.

No matter where you put the box of wipies on the bed while during a diaper change, he can hike his leg up and kick them off the bed.

Carrying the hypotonic child is similar to trying to hold on to a large bag of water with a 30-pound ferret inside.

Regardless of how securely you fasten the buckle in the shopping cart, the child with hypotonia will be able to escape, usually in the check out line as you are explaining to the sacker that you would like the cold items bagged together.  (Incidentally, other shoppers find the sight of a small child riding on the checkout conveyor belt quite amusing….)

A hypotonic child can reach behind his back without any detectible upper-body rotation and grab glass bottles out of the shopping cart and hurl them onto the concrete in the parking lot, making his older brother believe that there has been a drive-by shooting, and that since he doesn’t feel any pain, the target must have been their mother whom he expects to drop to the ground at any moment.

Although no scientific studies have been conducted on the matter, anecdotal evidence would indicate that hypotoina is associated with mad dancing skills.

“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

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.

“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.

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.

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….