Archive | December, 2011

The Looks

(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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Your hands tell me when you’re happy

Christmas was one week away, the excitement building as we prepared presents for friends and family. We laughed as we changed the words to our favorite Christmas songs, drank Egg Nog and opened the next door to find out what shape the next chocolate was in our advent calendars.

happy handsAs we talk about Santa and what each of us is hoping for, I lean over to my son Cameron and say “Do you know how I always know when you’re happy?”

He said “No, how?”

I replied “Your hands tell me.”

He smiled and said “because I flap my hands!”

At that point, he began bouncing on his toes and flapping his hands so hard that I thought he might fly.

Beside us, sitting up against my hip, was my dog Spirit. She is Cameron’s best friend and, I think, Cameron is her best friend too.

I said to Cameron “Cameron, do you know how I always know when Spirit is happy?”

He said “No.”

I told him “Because her tail tells me.”

Again, the excitement building as he flapped his hands really hard, “She wags her tail!!”

I explained to him that Spirit doesn’t have hands so she wags her tail but I imagine that it’s very much the same feeling. There’s just so much happiness inside that it has to come out.

I told him that I know some people might bug him about it, some people might say silly things or tell him that he shouldn’t… but I’ll never stop him from showing me how happy he is.

He got up and gave me a big hug.

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That could apply to anyone

I can’t even begin to count the number of times that one of my statements or posts were responded to with “actually, that could apply to anyone” or something along those lines.

Some of my favourites:

  • That could apply to all parents
  • That could apply to any child
  • That could apply to any group of people
  • All people should do that
  • Everyone would be better off thinking that way

Why does it bother me so much?

For the first hundred times or so, those responses rather bothered me because this blog isn’t about most people… my twitter account is not about humans in general. I focus on Autism and that’s what I write about.

It also reminds me of all of the times where I’ve tried to explain the ways Autism affects my child where people would respond with “but that’s something a lot of children do” or “ya but that could just be a phase.”

It’s not exactly a closed minded response but in the moment, to a parent with child that has Autism, it can feel like it. You just want to grab them by the collar and say “You’re not listening to me!” Well, ok, maybe not to that extreme but it is frustrating.

For a while, it got on my nerves, making me want to reply to them… explain that the world isn’t my focus, Autism is… but after the first hundred times or so, I started to like hearing it.

dare to be differentIt does apply to anyone!

The truth is that people say that because the things I share really do apply to all parenting, to all children and to all others in general.

Parenting methods, children being children…. almost all of any of the things that we can talk or write about in regards to Autism truly does tend to apply to anyone. We all know that, it’s not the individual “quirks”, it’s the amount of quirks and severity of those quirks which indicate the presence of Autism.

I say “quirks” because when it’s not Autism, that’s what they are.. quirks. Right? A stimming behavior without the communication impairment, social issues or other symptoms is simply a quirk.

So when I write about routines, methods to improve behavior, general observations about how people are, parents are, autistics are… the truth is, 99 times out of 100, those things could apply to everyone.

And that’s a good thing… because autistics are everyone. “Different, not less” is right but at the same time, everyone is different. And if everyone is different, then we’re all the same too. Our differences don’t divide us… they unite us.

So yes, it still bugs me still… in a way, because I didn’t call my website “EVERYONE from a father’s point of view”… so I’m not going to write about everyone. But at the same time, in a way, it brings me comfort that the things I say about Autism and autistics really could apply to everyone.

Every time someone says that, I’m reminded once again that maybe autistics aren’t quite so different after all.

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My child vs his shirts

Cameron - Breast ManThis story begins back when he was just 3 months old and we were already having to buy him shirts for a 6 month old…  born at a modest 7 pounds and 2 ounces, we had no idea that he’d grow so quickly.

At 3 years old, he was wearing clothes for a 5 year old… by 6, he was wearing clothes for an 8 year old.

Basically this meant that any clothes we bought him one summer would be donated by the next summer. In some cases, clothes we bought him at the beginning of summer were no longer fitting at the end of summer.

His shirts didn’t last very long but they usually survived to be handed down to his little brother or donated.

That brings us to our current problem…

Satisfying the senses

My son has taken to the habit of stretching his shirts such that the collar comes down across his shoulders, or he pulls his arms up into his shirts and stretches out against it.

Worse than that, he now chews on the collars and the ends of his sleeves as well.

The frustrating part of this is that just a year ago, we had a lycra bag that he could get into and stretch against as much as he wanted. This is an actual therapy tool for those that need that kind of stimulation.

Cameron had no interest in it.

Now we’re a year later and he’s running out of shirts.

We have an appointment to discuss this with his therapist but honestly, I am semi convinced I already know what needs to happen… we need to try what we tried before.

I don’t know if it will work, but if it does, it will certainly prove just how complicated Autism treatments can be. Not only does no one treatment work for every single person, or to varying degrees, but it also shows that what might not work at one time may work at another.

As children develop, as lives change, as situations are constantly in motion… the needs of the individual can change too.

It’s one of those very frustrating situations because not only is he going through shirts quicker than ever before but, as an Autism family, we have less money than ever to be replacing them.

We try to keep on top of him, to remind him to stop but honestly… have you ever tried to get someone to stop tapping their foot, pen, fingers, knee… those things that people do without even realizing it… how do you stop that?

It’s just that much worse when there’s an actual NEED to do it… such as sensory stimulation.

I guess we’ll just have to talk to his therapist and see what our options are.

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Autism – is it an adjective, a definition, a description?

Well, actually Autism the name of a specific disorder as well as a whole spectrum of disorders that includes Autism itself. But that’s the technical stuff and my mind tends to work in the abstract a little better. When I talk about Autism, it’s in relation to a person, usually my son. And it’s in this way that I try to clarify exactly what Autism is to me as well as what it may be to others.

I won’t try to tell you what it should be for you or anyone else because, as I’m about to explain, it can be different for everyone.

questionsDoes it define a person?

The popular opinion, from what I can tell, is that Autism is usually considered one of a long list of adjectives. For example; my son is 6 years old, dark haired, very funny, autistic and very good at math.

In this context, it gives a person some insight into what my son is like, providing they know a little bit about Autism. It is just as important and just as relevant as everything else I included in the list but it’s also just as unimportant… him being funny isn’t exactly going to give you his life story, as an example.

But is it really that simple? For some people with Autism, no it’s not.

Being a spectrum, Autism can range from leaving a person dependent on care for life, unable to speak or function within the “norms of society”… all the way to the other end of the spectrum where an autistic can become famous and rich using the amazing “gifts” that Autism has provided them… such as a photographic memory, amazing artistic or musical skill, a super computer for a brain or any other number of skills.

Most people fit somewhere in the middle of the spectrum.

The reason I mention this is that autistics are often asked how much of a role Autism plays in defining them and I’ve been fortunate enough to see quite a few responses… and they range as widely as the Autism spectrum itself.

There are those who, like the adjective example above, feel that Autism is simply another trait of their existence and therefore no more or less important than other characteristics that may be used to describe them.

There are others who simply don’t understand what the big deal is anyway and just refuses to put that much thought into it. They are who they are and whether or not they have Autism is not on their mind any more than their blood type. It is what it is, unless someone asks you, no one really puts much thought into it.

Finally, there are those who feel that Autism absolutely does define who they are in that it affects every aspect of their life. It affects how they can and can not interact with others, how signals are perceived via their senses (amplified, dulled, filtered, unfiltered), it affected how they were treated in school, work and life in general… from morning until night, 7 days a week, Autism makes every aspect of their life different and thus, very much defines who they are.

So which is it?

Well, I already told you that I won’t try to tell you what is right and what is wrong… I won’t try to convince any of those people I’ve mentioned to see things differently than they do because not only is that not my place but I don’t believe an of those people are wrong.

We all see life differently, we all see ourselves differently and we all have the freedom to feel about it how ever we want.

I don’t think that Autism defines who my child is… he is so much more than the struggles and other effects that Autism has on him. Still though, as he gets older, he might not see it that way. That doesn’t mean I’m wrong or that he’s wrong either.

The only ones that are wrong in this scenario, are the ones who tell others that they are wrong. The people who turn these types of discussions into an argument, a “heated debate” or start pulling out derogatory statements about “the type of people” who think one way or another.

Keep an open mind. The reasons make perfect sense. If anything, you’ll find yourself conflicted as you find yourself agreeing with the various stances on the subject.

That’s ok too. It’s a good place to be. You’re taking the time to understand, not judge.

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