Tag: disability

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Taking the Field

The world seemed to stop as Missy slowly reached for the softball on the ground. Felt for a grip. Then raised it up above her head and THREW.

“Woohoo!” “All right!” “Way to go, champ!”

On this day, on this ballfield, it was a moment of triumph to equal any World Series ever played.

This marked yet another season-ending game for the Niwot Nightmares, a “Softball for All” team that Missy, my wife’s developmentally disabled aunt, has played for since its founding. The season ran a little later than usual – torrential downpours in June had a habit of washing out games – but otherwise, the same Monday evening joy and enthusiasm reigned.

If you’ve never seen the Nightmares and their league-mates in action on a summer’s evening, I highly recommend it. It’s a little different than anything you’ll experience at Coors Field. There’s no screaming vendors, no multi-million-dollar contracts … heck, there aren’t even any outs.

Instead, you get a game that moves at the pace of each player. You get friends coming together and cheering each other on, including the ones on different teams. Most of all, you get a sense of fun that has kept families coming back for years.

And when Missy steps on that field, she does it with the pride of an All-Star. Heck, she’s tipped her helmet to the crowd so many times – sometimes in a single at-bat – that we started nicknaming her “Hollywood.” For her, it’s both a game and a celebration.

She’s taking pride in what she can do. Pushing it, even. Not with an eye to someone else’s performance, but with an eagerness to meet the moment.

I try to do the same. I’m not always successful.

I suspect most of us aren’t, regardless of our level of ability.

We learn early on to judge what we can do and “stick to what we’re good at.” It’s a toxic lesson but a hard one to avoid. Everyone loves success and hates failure, and getting good at something requires a lot of failure.

And so, we diminish ourselves. We learn not to step out on limbs so that we’ll avoid embarrassment … and as a result, we never really learn to fly.

I’m not just talking about acquiring skills. These days, most people have at least heard of “imposter syndrome,” the conviction that everyone else has it figured out and that sooner or later they’ll realize you’re faking it.  It’s an affliction that’s not limited to the obscure – the author Neil Gaiman was once shocked to discover that Neil Armstrong, the first man on the moon, felt out of place in a room full of accomplished individuals because “I just went where I was sent.”

“And I felt a bit better,” Gaiman famously wrote later. “Because if Neil Armstrong felt like an imposter, maybe everyone did.”

We’re all vulnerable. We’re all doing the best we can with what we’ve got. When we understand that, I think we become a little easier on each other. And on ourselves as well.

And then, only then, can we really grow.

I’m not saying we’re all going to turn into figures of legend and envy. But we’ll find what we need for the season we’re in. And maybe a little joy besides.

Move at your pace. Give yourself permission to discover. Meet the moment with what you have, whatever it may hold.

And if that moment leads you to a celebration with friends on a hot summer night … so much the better.

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She Shoots, She …

WHAM!

Missy grinned as I scrambled to the basketball and ran it back to her. Our fall day in Carr Park had turned out to be perfect for an afternoon of shooting hoops.

Or … well, shooting something.

WHAM!

From her wheelchair, Missy gleefully examined the target. (With her cerebral palsy, it’s easier and safer for her to shoot while sitting instead of standing.) After a moment, she reared back and let fly with an energy Michael Jordan would have envied.

Jordan, of course, specialized in “nothing but net.” Missy’s aim was a little different.

WHAM!

“Good one!”

Shot after shot sailed at the metal goalpost. Lacking elevation but never determination, Missy  had decided to shoot for a target at her own level. And more often than not, she was hitting it.

WHAM!

In the 10 years since Heather and I became Missy’s guardians, we’ve learned a lot about her abilities. We know she can remember and follow instructions (when she feels like it), that she can follow along with the plot of a novel and keep track of the characters, that she can bowl a 100 game and dance up a storm and write a recognizable “M” when she works at it.

We also know, of course, that there are limits and accommodations. Missy uses a ramp to bowl. She solves 50-piece puzzles instead of 500-piece ones. She often dances with a partner or a piece of furniture nearby to keep her balance.

In short, she likes many of the same things that everyone else likes, but she often enjoys them in a different way. Her targets are at a different level, one that engages her and even pushes her, but  without being cruel.

That’s important. And not just for Missy.

We’re often encouraged to dream big, set our aims high, shoot for major goals, whether in the personal realm or the wider world. And there’ nothing wrong with doing any of that … until it becomes a source of intimidation instead of inspiration. Until you reach a point where, because you can’t do everything, you don’t do anything.

But there’s nothing wrong with setting the bar to where you are.

Writers know this. When the fantasy author Terry Pratchett started out, he wrote just 400 words a day for his first three years. That’s about as long as everything you’ve read in today’s column so far. By the time Pratchett died, he’d written over 50 books.

Chronic pain patients know it. There’s a saying that’s gone around social media that “Anything worth doing is worth doing badly.” The usual example is that if your pain and fatigue won’t even let you spend two minutes brushing your teeth, it’s worth doing it for 30 seconds instead – because it’s still better than not doing it at all.

Leaders and dreamers throughout the ages have known it, winning the small battles that can be won now, even when the larger vision still seems so far ahead.

You set your aim. You give it what you’ve got. And if what you have today isn’t what Stephen King has, or LeBron James, or even a Disney Channel extra, it’s still yours. And you’re still doing it. That matters.

When the goalpost is what you can hit, hit it hard. And keep shooting.

The target may change. The sights may rise. And even if they don’t, if it moves you forward or gives you pleasure or tests what you can do –  then it’s a win.

So have a ball. And if you have it on the Carr Park courts … well, just watch out for flying objects, OK?

WHAM!

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Hall(oween) on Wheels

Missy is just about ready for the season.

No, not the Christmas season. Missy is ready for THAT one at the drop of a jingle bell, at a pace that would embarrass even a major retailer. Holiday displays in September? Please. Missy’s been known to welcome in the spring with a 110-decibel version of “O, Holy Night” on the stereo, and you haven’t lived until you’ve seen the Face Vocal Band holiday video in July a dozen times or so.

No, I’m talking about the time of false faces and plastic pumpkins, of ghosts and goblins and culturally-sanctioned begging for food. Halloween is just about here, and Missy can’t wait.

As I’ve mentioned before, this is a new thing. Whether it’s because of her developmental disability, or just a personal preference, Missy never used to like being surrounded by people in masks and costumes, never mind struggling into an outfit herself. The magic began to happen when she realized she could become the heroes of her favorite stories, especially a certain Boy Who Lived. She’s been Harry Potter twice now, with another two Frodo Bagginses mixed in, and it looks like Star Wars might be on the way this year.

So now she points out pumpkins with alacrity and paints them with enthusiasm. (Yes, we paint rather than carve.) She ooh’s over costume pieces and keeps her Hogwarts robe handy just in case. And when October hits, it’s time to roll. Literally.

And that’s where the challenge sometimes comes in.

Because of her cerebral palsy and other balance issues, it’s hard for Missy to walk long distances. So once she’s all dressed up and has her pillowcase in hand,  she and I do the neighborhood trick-or-treat run by wheelchair.

And appropriately for Halloween, that’s when the unseen becomes visible.

If you’ve ever had to travel more than a short distance on your own wheels, you know what I’m talking about. A host of obstacles that most of us never even think about suddenly loom up with the inevitability of Freddy Krueger pursuing a teenage nightmare. High curbs. Cracked pavement. Cars parked on the sidewalk, or hedges reaching over it like a lurching zombie.

In many respects, Longmont is better than a lot of communities about this sort of thing, or we wouldn’t be able to consider trick-or-treating at all. But even so, it still requires constant awareness, regular rerouting, and enough effort in boosting her wheelchair over small hurdles that it pretty much becomes my Oct. 31 core workout.   Sometimes Missy giggles at the effort, sometimes it draws a “No!” of annoyance instead.

At times like this, I am grateful for the neighbors.

On a night when fun could easily become frustration for her, many of them keep a lookout for her. Some have met her at the bottom of porch steps with their bowls of candy, so that she doesn’t have to keep getting in and out of the chair. Some have given her an extra share, or kept a special supply on hand just for her, to make her night a better one. Many have greeted her or helped clear the way for her while going house to house with their own children.

It’s a parade of small kindnesses and moments of caring. And they make a difference.

Just as they do long after the costumes are back in the closet.

Many people face similar hidden obstacles, whether because of race or sex or disability or a hundred other things that are simply part of who they are. Most are like that crack in the pavement – easily crossed without thinking by  most of life’s travelers, but an insuperable barrier to some.

That’s where awareness matters. And kindness. And empathy. A realization that others walk on a different path and face different challenges than we do, and an effort to understand and meet those challenges.

It’s a basic trick. But it can be such a treat. And it makes all our days a lot easier.

Even the ones with overpowered Christmas carols.

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A Failure of Imagination

Once in a while, Missy and I will decide it’s time to roll. Literally.

We don’t break out the wheelchair too often. But when we’re headed for somewhere where the distances are too great or the durations too long to be easily handled by Missy’s uncertain balance, we’ll load her up. Most of the time, it’s great fun for us, especially when I put on bursts of speed or sudden swerves to get her laughing and cheering.

And then, there are the other times.

Sometimes we find places where the sidewalk rises, just a bit. Not enough to be noticed by a pedestrian. But enough to temporarily turn a small wheelchair into a stuck grocery cart, until I lean and lift to pop it over the seam in the pavement.

Sometimes we find a place where the sidewalk runs high and the nearest slope to get on or off is far away.

Sometimes we find places where the sidewalk ends. Not the beginning of a Shel Silverstein land of whimsy and enchantment, but where the sudden appearance of dirt, grass, or broken landscape in mid-block says “Oh, you wanted the other side of the street.”

When it happens, Missy growls. And I fume or sigh and look around.

For a moment, we’re not just anybody else. We’re living in someone else’s world. A someone who didn’t see us coming.

***

Of course, you don’t have to be disabled to have a walk made challenging. Sometimes you just have to be the wrong kind of astronaut.

Most of the country heard about a planned spacewalk a few days ago. It was supposed to be historic, the first NASA walk into the Great Beyond made by two female astronauts.

One of the women had to stay aboard the station instead. Why? Because there was only one medium-sized spacesuit ready for use. And both of them needed it.

Yes, getting to orbit was actually easier than getting out the door.

Funny. For a moment, I thought I heard a Missy growl.

***

In many ways, we’re an amazingly imaginative species. We’ve sent people to the moon, sent data around the world in an instant, brought superheroes and fantastic adventurers to life on the movie screen (even if we can’t always give them decent dialogue). From biology to fashion, we constantly push back the borders on every side.

But in other ways, we can be just as amazingly limited.

Ask a left-hander who’s ever had to use an old-style school desk or a random pair of scissors.

Ask someone who’s 6’4” walking through a building made when the average male height was 5’6”.

Ask the 9-year-old girl last year who found that the basketball shoes she was excited about had labeled all the smaller sizes as “boys.”

I’m sure many of us could add to the list of examples, from the seemingly trivial to the potentially life-threatening. Usually not from active malice, but because “we never thought of that.”

It’s so easy to do. We get used to a type, so much so that we stop seeing it.

And then the assumption gets challenged. And everyone gets to do a double take.

It affects the things we make and the stories we tell (and who gets to be the hero in them). It  affects how we interact with the world, and with each other. It affects whether we even see that there’s an “other” at all.

It’s where imagination meets empathy. And in that place, we not only remember that other people matter, but try to envision what “mattering” means. Beyond our own race, gender, level of ability, or anything else.

We’ll screw up. It’s inevitable. We’re human. But if we’re making the effort to see, to learn, to understand, to put ourselves in the place of another – just maybe our vision wont be so nearsighted, so often.

The more we can do that, the more easily we can all roll along.

Right, Missy?

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Windows in the Wall

It began with a deep family discussion. My wife Heather and her sister Jaimee had become embroiled in one of those topics that can transform an entire autumn: should Jaimee dress as Princess Leia for Halloween, or as a unicorn?

The arguments were weighed and considered with the seriousness of a House investigating committee. (I kid, of course –  it was actually much more serious than that.) In the midst of it, without warning, our disabled ward Missy looked up.

“Unicorn,” she said.

A pause followed.

“Well,” Jaimee said, “if Missy says so, I suppose that settles it!”

I’m not saying Missy is an Old Testament prophet, whose judgments come replete with ominous clouds, rolling thunder, and a lightning show worthy of Castle Dracula. (Well, not until she gets really impatient with us, anyway.) But if you’ve followed Missy in this space at all, you know that she tends to the quiet side. Some people say a word to the wise is sufficient; for Missy, a few words to a conversation is abundance.

But in the time that Heather and I have cared for her – seven and a half years now – there are periodic bursts of new vocabulary, like a river carving new channels. Every so often, the results are striking enough to mention here, like when “ma shoe” became “ma tennis shoe” a few years ago, or last Christmas, when she improbably added “Hallelujah” to the list. Even calling me “Scott” sometimes instead of “Frank” (her dad’s name) or “He” counted as a major milestone.

The thing is … lately, there have been a lot of milestones.

“I wanna go” is a standard phrase. But “Let’s move over here” is new.

“Lookit!” is an old favorite. But “Look at the animals,” said while pointing to a herd of horses, caught us off guard.

“Can you do me up?” popped out one afternoon, as she extended a jacket in one hand.

And even the stock comments sometimes turn into short conversations now.

“Where are we goin’?” Missy asked for the 10th time near the end of a drive one day. Rather than answer again, I lobbed it back to her.

“I don’t know, Missy, where do you think we’re going?”

“Home!!”

She was absolutely right.

We’ve always known that Missy understands more than she’s able to say, that a lot hides behind her silence. One night, as I read A Wrinkle in Time to her, the character Mrs. Whatsit was describing the art of “tessering” – folding time and space – by noting how much more easily a caterpillar could cross the edge of a picnic blanket if the corners were pinched close together.

Heather peeked her head in. “How far have you gotten?”

“We’re learning how to tesser,” I responded.

And Missy, quietly, picked up the edge of her blanket and brought the corners together. And grinned.

Lesson learned.

And now, by fits and starts, the words are starting to catch up. Not in a mass wave – the limitations she has are still real ones, an internal wall rarely scaled. But she’s increasingly finding cracks in the wall. And every once in a while, she builds windows.

I don’t claim to know how. Yes, we read to her a lot, we talk with her a lot. Maybe it’s as simple as that – that what you give your attention to flourishes, like seeds receiving water.

But that discounts Missy’s own work. The learning and growth that’s going on inside her, the process that only she can see.

Maybe that sort of growth always seems kind of magical, regardless of your age or condition. We’ve all done it. The lucky ones never stop. And most of us are still powerless to explain it fully.

I’d love to hear what Missy thinks. Maybe someday I will, just a little. After all, she’s already folded time and discovered unicorns. What’s one more miracle?

Let’s move over here, and see.

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Shall We Dance?

Missy’s finger unerringly found Feb. 27 on the calendar. Then her hand went to her collar, tugging it up and out at an angle – her signal for getting dressed up.

“I want to go,” she said firmly.

This one didn’t require an expert in Missy Charades to figure out. Once again, we would be off to the prom.

The prom, in this case, is the “Shine” dance for the disabled, currently held every other year at Flatirons Community Church in Lafayette. It’s a huge night in every sense, inviting hundreds of people to don their best clothes and then eat, play games and – of course – dance until the floor wears out.

For Missy, this is an experience just short of heaven. After all, it combines some of her favorite things in the world. It’s peoplewatching on a massive scale. It’s dressing up for your friends (and especially, in the case of Missy the Flirt, for the guys who can be greeted with a shy smile and a “Hi …”) It’s music cranked up past 11 and freedom to move with all the energy and enthusiasm you can muster.

And this year, it’s something else as well. By some odd coincidence of the calendar, Shine falls on my birthday this year.

That couldn’t be more appropriate. Because being with Missy these last four years and seeing the world through her eyes has been a gift beyond compare, for both me and my wife Heather.

Better still – to see how many people can truly see her.  That’s not always a given for the developmentally disabled.

I’ve said it before, but it’s worth repeating: We have a gift of invisibility that would put J.R.R. Tolkien’s magic ring to shame. But it’s almost never used on ourselves. Instead, we grant the “gift” to anyone whose presence is too uncomfortable for us to bear.

That could be the disabled. It could be the homeless. It could be anyone we don’t know how to approach – or that we fear might approach us, as though misfortune were somehow contagious.

Maybe that’s part of it. Maybe it’s too strong a reminder that all our gifts are temporary, from the money in our banks to the thoughts in our heads. That at any moment, something could happen that resets our entire existence.

It’s a scary thought to look in the face. No one could deny that. But when it keeps us from looking others in the face as well, it’s gone too far.

Those others look back. They know. And they understand more than you would ever guess.

Certainly Missy does.

And thankfully, blessedly, she’s been lucky enough to be surrounded by people that understand her.  Friends and relatives and neighbors who know the balance needed, how to make accommodations without treating her like a pet or a doll. Because of that, she has a life – and a social calendar! – that still makes me blink.

Bowling. Softball. Swimming. Trips downtown. Always among friends, always with someone who gets a look of recognition and a brilliant smile in return.

I count myself lucky to get a lot of those looks.  And to truly see the spirited, mischievous person behind those dancing green eyes.

And when that means escorting her on her big night – well, strike up the band and never mind the crowds.

Our partner’s ready.

It’s time to dance.

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A Time to Remember

Missy’s been down lately.

Nothing unusual in that, of course. We’ve all been there. To parody the old title, Even Disabled Women Get the Blues, and Missy has occasionally had her own reasons to need a little comfort. Sometimes it’s an illness. Sometimes it’s an emotional moment in a movie. Sometimes it’s because Blake the Canine Trash Compactor has just eaten her crayons. All the usual motives.

But what’s interesting now is the timing. This one keeps a schedule.

My wife Heather first noticed it a few years ago when she was still just visiting and helping Missy, before we became guardians to the woman of few words and many mischievous smiles. At first we thought it was a coincidence. Then, after the second or third year, we realized what it had to be. By now, we’re positive.

This particular stretch always hits in late January. Right around the time that Andy died.

Andy was Missy’s brother and Heather’s uncle, a man who liked to tease and joke about as much as he liked to fly. And like many a brother, one favorite subject of his teasing was his little sister – not in a mean-spirited way, but in one that often set her laughing, too. Not a big , boisterous man but an open and friendly one that no one could help but like and smile along with.

But nine years ago, our favorite high flier came to Earth too soon. Brain cancer. It hit all of us pretty hard and still does.

But I’m not sure any of us realized at the time just how deeply it touched Missy.

Sometimes Missy almost seems to live in a world without time. Oh, not in the small sense. She remembers the daily routines: when her “bus” is supposed to come for her day program, when lunch is supposed to be, when to start arguing about having to go to bed. But on a larger scale, it’d be forgivable to wonder how much of an impression time makes, outside of major events like Christmas or Halloween (which carry their own rather obvious cues). Both she and her world seem to go on much as they always have, moving at her own pace in her own way.

But when the same “down” period always seems to hit in late January, centered around the same day each year – well, it becomes harder and harder to not notice.

Understand, we’ve never made a big deal of it around her. We’ve put up pictures and memories on Facebook like the rest of the family, but it’s not like she sees us stalking around the house in crepe and gets reminded. In so many ways, it could seem like just another day.

But to her, it obviously isn’t.

And while that’s sad, it also leaves me impressed. Because once again, it shows there is so much more to this lady than anyone would realize at first sight.

The mental disability that took or blocked so much has not taken her memory.

Not where it counts. Not where it ties her to the larger world.

It’s easy for that world itself to forget. To look at someone like Missy and dismiss her as “other,” unaware, apart. But she notices. She learns. She understands, even if it isn’t always the same understanding that an adult of her age would usually have.

Open and welcoming, she will avoid someone she’s been given reason not to trust.

Normally near-silent, she will react to the plot twists of a loved bedtime story – often with comments.

And for all the seeming changelessness of her life, she too holds close the ones no longer there.

It sounds obvious when you think about it. But how often do we?

The time will pass. The blues will lift. And soon we’ll be dealing with a restless Missy again, eager to bowl or swim or venture out on a Saturday morning trip downtown.

I think Andy would be pretty proud of her.

I know Missy still has one more smile for him.

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In the Know

When Missy is in a bit of a mood, she can suddenly become the most knowledgeable person on the planet.

“Come on, Missy, it’s time to step out of the tub.”

“I know!”

“Sorry, Miss, the tea’s not ready yet. It should be just a couple more minutes.”

“I know!!”

“Remember, seat belts before music.”

“I knooooow!!”

It doesn’t take two years of living with Missy to discover that “I know” is often code for “I’m tired, I’m cranky, I don’t feel like doing this.” Or occasionally, it means the more difficult “I know, I want to do this too, but I’m not allowed to agree with you yet.”

Except when it doesn’t, of course.

I wonder if U.N. translators ever have days like this?

If you’re joining us for the first time, Missy is my wife’s disabled aunt, a woman who’s nearly 40 physically but often seems much younger mentally. How much younger? It’s hard to say. Many of her actions and activities suggest around age 4, but she’ll follow conversations and even the plots of books like a young adolescent, at least.

The trick is, she doesn’t say much. So it’s hard to say what she truly doesn’t know and what she knows, but can’t communicate.

We encourage her to use her words, of course. But we’ve also learned to listen carefully to the ones she does use.

Some are obvious. “Dumb dog.” “I’m goin’ bowling.” “I want to eat the food.”

Some are more subtle. “I wan’ my book” can mean she’s ready for reading time, or that she’s looking for her big red purse. We think that comes from “pocketbook,” though the purse in question is a wee bit bigger and only slightly less dense than her bowling ball.

“I’m cold” usually means any temperature change (it was a major breakthrough when we heard her use the word “hot” recently). “Work” is her day program. “Mom” is often Heather and sometimes me, though I’ve also been “He” or even “Frank,” the name of her late dad.

And once in a great while, you get something more. My personal favorite, told before, remains the day her dad had a close call in traffic. Missy the Silent, Lady of 100 Words, immediately turned to him and said “Dammit, Frank! Are you trying to kill me?”

Surprise!

So what does she know? More than we think. I’m sure of that. If I were to step behind her green eyes for even a moment, I suspect I’d be shocked by just how much is going on there.

But then, isn’t that true of most of us? So often, we take refuge in routine phrases and conversations, giving little hint to the real landscape inside. Only the trusted, the careful and the lucky get a clue otherwise.

With Missy, I feel like a bit of all three.

So I listen. And I wait. And piece by piece, we build a connection that goes beyond the audible words.

That’s how you make a friend. A family. An understanding.

And if it means climbing a wall of stubbornness at times, it’s familiar territory. Heaven knows I’ve been hard-headed, too; maybe even with less reason.

But the end result will be worth it. Is worth it.

How am I so sure?

Trust me. I know.

 

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A More Deliberate Speed

For a moment, I stopped and stared at the article. A physicist at NASA had shown how a warp drive might be possible in the real world. Using a mass equal to a Geo Metro, a spacecraft could reach the nearest stars in weeks – not decades, not years, but weeks.

Star Trek made reality. Incredible.

I checked the clock. Yeah, just about time.

“C’mon, Miss, let’s go brush your teeth.”

After a token protest, Missy’s small hands take my arm and we travel together. Step. Step. Step. Each pace deliberate, the footing carefully chosen.

It’s not the speed of light. It’s probably not even the speed of Judith Light, the TV actress. But it’s our speed. And it gets us there just fine.

This is what it’s like, living at the speed of Missy.

For those who came in late, Missy is my wife’s developmentally-disabled aunt, whom we look after. She’s my age physically, but quite a bit younger in mind and spirit. She likes red purses, loud music, frequent bowling and bedtime stories.

And because of some physical problems, she moves … well, carefully.

I won’t say clumsily. She can be very quiet and sneaky when she wants to be, to the point where we sometimes call her the family ninja. But she takes things at a slow pace, usually with one hand touching a wall, or a piece of furniture, or a nearby person for balance.

It takes a little getting used to.

After all, when you travel with Missy, you move at her tempo. That means shutting down a lifetime of instincts and conditioning. We live in a world that tells us speed is essential and faster is better; that if you haven’t started now, you’re already late. That even the stars are reachable, if we just move fast enough.

And at the holidays? Please! This is the time of year when our folklore includes an elf who can make individual deliveries to six continents in one night. Looking at the stores and parking lots, I’d say we’re doing our best to match him.

That’s not an option with Missy on your arm. Step by step, you relearn the world.

You learn to take in your surroundings. Look for obstacles. Consider routes before pursuing them.

You take the weather more seriously. Did we put on the sunscreen, grab the umbrella, bring the coats? Pay attention, because you’ll be out in it for a while.

You see faces, not just passing lumps of humanity. Especially with Missy on your arm. Her social circle is wider than mine; some days, it seems that half of Longmont knows Missy and has stopped to say “Hi.”

And you do the same. No hurry. No rush.

No need.

When I used to live in Kansas, I once noticed how different it felt to walk to work instead of driving; how I was actually seeing the neighborhoods instead of just passing through. It’s a smilar feeling now, in an even deeper downshift. You can’t avoid being part of the world instead of being apart from it, can’t help paying attention.

Especially to the wonderful person walking with you.

Missy would run if she could. I know that. But for now, she walks. And I walk with her. And together, we make pretty good traveling companions.

We may not reach the stars. But I sure feel good about our orbit.

 

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Hearing the Pain

Missy took a spill the other day.

Not a serious one. Just a hard landing on bathroom tile, the kind that leaves your arm sore for a while afterward. No breaks. No bruises.

It still makes you wince, though. Or should. It’s part of being a guardian, a parent, an adult. When you care for someone, you don’t want to see them hurt.

I only wish every adult felt the same way.

My mind’s been on the topic lately thanks to Stuart Chaifetz. You’ve probably heard the story. Like me and my wife, Chaifetz has someone who needs special care – for us, a developmentally disabled adult, for him, his autistic 10-year-old son, Akian.

Chaifetz got worried when Akian started lashing out in school, even hitting a teacher and his aide. Six months of meetings failed to uncover why. Chaifetz knew he needed to know what was happening at school, but Akian lacked the ability to tell him.

So he put a wire on his son. Secretly tape-recorded his school day.

The result horrified him. Adults yelling at the students, mocking the students, humiliating and threatening the students. One told Akian “you are a bastard” and warned him “Go ahead and scream, because guess what? You’re going to get nothing …until your mouth is shut.”

“What I heard on that audio was so disgusting, vile, and just an absolute disrespect and bullying of my son, that happened not by other children, but by his teacher, and the aides — the people who were supposed to protect him,” Chaifetz said in a video that has shot across the Internet.”They were literally making my son’s life a living hell.”

It’s an anger I can feel echo inside my own soul.

I hate bullies. Old, young, in between. I endured too much of it myself as a kid to ever want to see it in another. It’s a pain that makes days something to be feared instead of anticipated, a trial you don’t dare talk about until you have to.

And when the victim literally can’t talk about it, that is the lowest of the low.

Heather and I have cared for Missy the Wonderful for about a year now. I know that if we ever sniffed the slightest hint of mistreatment by someone else, we’d be on it like a shot, doing what we had to to pin it down and turn it off.

When you care for someone, you don’t want to see them hurt.

But how do you know?

How do you ever know?

It’s a simple answer and a hard one at the same time. To quote a character from Missy’s Harry Potter books, it takes “Constant vigilance!” Granted, you don’t need the paranoia of Mad-Eye Moody … but it all starts with watchfulness.

Whoever you care for, be it a child or a charge, nobody knows them like you. How can they? You’ve lived with them. You love them. You’ve seen them at their best and their worst.

And you know – or can know – when something seems wrong. Even without words. It can be a change in mood or behavior like Akian’s. Or maybe a wariness around a particular person. Or anything that silently screams to you “This is not normal behavior. Something is going on.”

Maybe you’ll be wrong sometimes. But better to be careful without need, than to need care and not show it. A sad truth, perhaps, but real.

If you heard a crash and an “Ouch!” in the bathroom, you’d check it out. This isn’t any different.

When you care for someone, you don’t want to see them hurt.

And let’s face it. There’s going to be enough painful falls in life as it is.

Nobody needs to be pushed.