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The Flood of Water

By on April 21, 2012 in Autism, Special Needs

I’m sitting there doing something when I being to feel I’ve heard the toilet flush about five times in a row. Then I hear my younger son Ned call, “Alex has flooded the toilet!”

I round the corner off our living room and there’s half an inch shining across the black and white tiles of the bathroom floor. My temper takes a predictable turn when I see the water. I step right into the water with my sneakers. Screw it. Except, to paraphrase Fargo, “He don’t say ‘screw’, if you get what I’m sayin’.”

“Ned!”

“What?”

“Ned, I need your help!”

How come I can’t call on Alex? How come all I can do is yell at him to get the hell out of the bathroom?

“Jeff, I’m coming!” says my wife Jill.

“I’m not talking to you! Ned, bring me the dustpans!”

The only bathroom trouble my 13-year-old son Alex has ever had – aside from aim, which as a guy I can tell you is over-rated – is a glass-eyed fascination with running water. He runs the faucet long enough when brushing his teeth to draw an environmental rebuke from Ned. His companion Daniel says he loves looking over the side at the Staten Island Ferry as the waves wash by; maybe it’s the whitecaps rising and fading, or the rushy sound.

I’m talking to no one as I use the dustpan (“Thank you, Ned! Good man.”) to scoop and dump splash after sort-of brown splash into the tub. The dustpan is flat and the floor is flat; doesn’t that make sense? Besides, months ago Alex, who has autism as if one couldn’t guess, ripped the crap out of the car-washing sponge we bought for these floods.

The flood has something to do with the toilet paper being near the end of its roll. Reports Jill, “I heard Ned telling Alex, ‘Stop using so much toilet paper!’” Sounds about right for my life.

“Ned, bring the Swiffer!”

Ned, who’s 11, helps: He lugs the sopping beach towels – it’s deep winter so who cares if we use them, and we use them to make the bathroom floor stop shining – in a bag to the basement laundry room. We sent him back in half an hour to put them in the dryer. He gets a laundry lesson, so that’s a plus.

We must look at the plusses. Alex has learned a lesson about flushing five times in a row – maybe. Ned has learned a household chore. We get the clean bathroom floor until Alex goes in there again, this time for legit business. Aim remains over-rated.

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What the r-word means until it means something to you

By on March 7, 2012 in Special Needs

To those who do not understand what the problem is with the “r-word”:

The r-word…  retard. It’s a funny little slang word that can be used to describe so many things, situations….  people. It’s a word that’s causally thrown around, used without thinking about it…  it doesn’t really mean anything.

Right?

Perhaps, if you do not have anyone in your family that has a disability or special need… it really doesn’t mean much to you. And so you don’t get it. Why do people make such a big deal about it? Why do so many people get so upset about a word that you don’t even give a second thought to?

Well, let’s fast forward a few years, actually, a lot of years and let’s say you’re now approaching your 80’s. You have children, grand children and loved ones beyond that. And then you have a stroke and in an instant… a large portion of your brain function is no longer available to you. You’re still smart, you still remember everything, you still love everyone… but now you struggle to say the things you’re thinking, you struggle to use your hands with precision…. you simply… struggle.

How would it feel if your children started calling you a retard? Your grandchildren? Ok, maybe not directly, but let’s put it this way…

One day you try to pick up a glass of water, it slips and crashes to the floor. A short while later in the day, you grandchild goes to pick up their plate, drops it and it smashes to the floor. Out of frustration, that grandchild says to themself: “Ugh, I’m such a retard sometimes!”

Ouch.

Perhaps that’s too far off, let’s put yourself a little closer to your present self as say… 20 years off from now, where you’re now a working and capable adult and your child has just been born into the world of limitless possibilities and wonder.

And then the doctor informs you that there have been complications. It’s nothing you did, it’s nothing they did… it’s just one of those things, right?

Something strange happens from that point on, where you begin to see your child as a determined fighter, a winner, an against all odds victor over anything that the world can throw at them and you love them so much more for it. It wasn’t one complication… it was a life long complication that has only made you and your child stronger.

Over time, you start to realize that the strange thing that I referred to earlier is actually that your perception is no longer that of your friends….

Where they still see a disability, you see strength.
Where they see failure, you see success.
Where they see retard… you see your child.

One day you try to get your child into a nice school in the neighborhood but they turn you away. They can’t accommodate your child and your child’s needs. Another parent is getting their child into the same school and asks why “that other parent and kid were turned away?”, the administrator tells them that your child has special needs and can’t be accepted. The kid, thinking you can’t hear, says “he wants to bring his disabled kid to this school? That’s retarded.”

Ouch.

The world hasn’t changed, you have. Now, instead of not giving that word a second thought… you do give it a second, third and fourth thought as it hurts you to the core.

It now means more to you than you ever thought it could… more than you ever thought it should.

And you speak up, and those kids don’t get you… they don’t understand why you’re making such a big deal about a word that they’ve never given a second thought and in that instant, you see yourself in those kids. You see what you were missing.

So perhaps it doesn’t matter right now, perhaps it’s just a funny silly little word… but some day it will hurt. It will hurt a lot.

Whether it’s you, your child, grand child, cousin…  friend… it doesn’t matter. One day you’ll hear someone use that word and it will hit close to home and it will bother you. It will bother you a lot.

It’s not a funny silly little word. It’s a stereotype. It’s a label. It’s a knife in the heart. And not to a stranger… to someone close to you, maybe even yourself.

You didn’t even give it a second thought.

Click the image below to learn even more and to get involved… let’s help people to understand what it really means when you use the r-word.

end the r-word

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The Looks

By on December 20, 2011 in Autism, Autism Awareness, Parenting, Special Needs

(This piece appears in the recently published Anthology of Disability Literature)

Recently, my 12-year-old Alex kept trying to scoot through an open door in the basement of our neighborhood supermarket. The store wasn’t crowded and hardly anyone noticed me hauling him back to the checkout line except a young lady working the register. I saw her looking at Alex with the small smile and direct eyes that I’ve learned mean: She knows someone with autism. She stroked his head once.

The cashier might have stroked Alex’s head out of understanding the kind of life Alex is likely to have. Of course I wish she’d felt comfortable yelling at him, comfortable because he was normal and he shouldn’t be trying to run in the basement of a grocery store, comfortable in the way somebody might be yelling at Alex’s typically developing 9-year-old brother Ned.

They don’t yell at Alex in the pizza place, either. I take him there in the fragile hope that he’ll eat the cheese off a slice or two while he’s out of the house so Ned can get his English tutoring. Alex and I often take the table way in the back, and the first few times I did this I was scared he would bolt while I got the pizza. “We’ll keep an eye on him, buddy,” the guy behind the counter said.

Alex has received his share of looks – more outside of New York City (they positively stared in the Massachusetts malls), perhaps because people are used to seeing just about anything in New York and passing by without what appears to be an obvious thought. When Alex was still a baby on oxygen, some kids on a Queens sidewalk did ask, “What happened to that guy!?” That was nice; Alex was emerging from a year in the hospital, and it was good to think he’d ceased to be patient and had finally become some “guy” on a sidewalk.

People – at least the people I’d like to have around Alex – seem to need to think there’s something beyond vulnerability to those with autism. Something special or beneficial to society, or at least likable and warm, like the message of movies like Rain Man, lessons tied up in what Richard Yates disdainfully called “a neat little dramatic package.” Yeah, there’s autism. But they can count cards, too! Some of them can count cards. Some can paint. Some with autism can do all sorts of things, just like some of all of us can, and of course the verdict is still a long way off when it comes to Alex’s real abilities. I want people to stroke his head someday because he helped them, because he contributed in a way that brought him fulfillment at the end of his working day. And I want to live to see him get that. I call that my Hopeful Outlook.

–Jeff Stimpson

Alex: The Fathering of a Preemie and Alex the Boy: Episodes From a Family’s Life With Autism

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The R-Word is not acceptable

By on May 25, 2011 in Special Needs

Ok so, this isn’t new and I’m a little late on the bandwagon but there’s a reason. You, my readers, are already r-word savvy… you already know not to use it. You already know how hurtful it can be. So I’ve kind of felt like I’d be preaching to the choir if I did a post on it.

I changed my mind.

I still hear the word far too much

R-Word.org

I live in a bilingual city where a lot of people not only speak French but it’s actually their first language. English is second. There are some inherent problems with this that I have noticed. Nothing drastic but there are some things that bother me.

For example, the French here tend to use double negatives a LOT. It’s not their fault though. When you translate French into English, if you do it literally, you end up with a double negative most of the time. I’m not here for a linguistics lesson so just take my word for it.

However this also means that some “slang” and even derogatory words become a regular part of their vocabulary just as easily as it does for teens in high school that throw around the latest trendy verbiage or insults or what have you.

Let’s just say that when something doesn’t make sense to someone around here, the most likely reply I’ll hear is “that’s so retarded.”

Accepting the blame

First and foremost, we all must accept the blame before we can try to make a change for the better. I’ve said it. I’ve never said it as an insult or in a derogatory fashion but I’ve said it as a means to describe something I disagreed with or thought made no sense.

I think it’s safe to say that most people have at least used the word in some way even if not meant to hurt someone with it. Especially those of us that are over 20 or so…. I mean, how long ago was it that we first started hearing that “mentally handicapped” was taking over for “mentally retarded”?

We never meant for it to be a bad thing to say but here we are… it is how it is, it is what it is. Now it’s time to put a stop to it no matter how we intend it’s use.

Making the pledge

There is a website (http://r-word.org) where you can make a pledge to not only stop using the word but to make an attempt to stop others from using it as well. I have made the pledge on their site.

Their site lists a couple of dialog examples on how this subject can be addressed: Example 1 and Example 2.

By doing this, we can help people to recognize when and how they use this word and hopefully stop them doing so.

But I don’t use it to insult anyone

As I’ve said all through this, I have never used the word to insult anyone or in a derogatory way but I still feel that there’s really no reason to use it at all. No I’m not saying that I don’t want anyone else to ever use the word even if it’s with the best of intentions, I am just saying that I do not want to use it anymore.

I feel that it’s use only perpetuates it’s future usage… it’s continual transition from a medical term to a derogatory term to a slang to what ever else it may become. There’s just no need to continue to have it be a part of our vocabulary at this point as it serves no purpose except negativity.

The r-word is not acceptable. Pledge your support.

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