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Parents Magazine completely forgot about Autism Awareness Month… and then…

By on March 24, 2011 in Autism

While checking around the various social networks and news sites, I came across this About.com news story: “Parents Magazine Ignores Autism Awareness Month“. The good news is that this is likely not going to be a mistake that they repeat next year because they got an ear full!

Autism advocates quickly “liked” their Facebook Fan Page, not with the intention of liking them, but being able to voice their disapproval (I think disgust is a better word but I’m trying to be nice).

The awesome folks at Try Defying Gravity have been covering this expertly and really helped with the push towards getting this resolved and resolved, it is… well, sort of.

Here is the statement, in the discussion group page of Parents Magazine Facebook Fan Page:

We would like to say again how grateful we are for your feedback and for the reminders in the last 48 hours that autism is not just 1 in 110—it’s about real people and real families. We feel that one of the best ways we can educate our readers and raise awareness for autism is through real-life stories. This is why we want to give you the opportunity to share your story with us and our audience as part of a blog series in addition to our planned articles. If you are interested in participating, please email [email protected] with the following information:

• Your Name
• Child’s Name
• Living with Autism: Your Family Story (Please keep stories to 500 words so we can include more voices in the blog.)
• Photo of your child/your family (*Optional. We will include one photo if you’d like.)
• Link to your personal blog/website (*Optional.)

We are very sorry for making you and your families feel dismissed or unappreciated. It was not our intention. Autism is an issue worthy of Parents magazine’s attention and we hope we can move forward together to raise awareness throughout April.

They screwed up, they know it. But does a discussion page post tucked away somewhere in the middle of page 2 really make it all better?

I think they could do better.

But instead of waiting on them to do better, let’s follow in Try Defying Gravity‘s example and do better for ourselves.

Update your blogs about this, share this on Twitter and on Facebook and let’s get their hidden message out and give them so much to write about that they’ll need a double thick issue, or better yet, need to devote the next 2 months to Autism.

Keep in mind, I am passionate about this because their response ties in perfectly to what I’ve been trying to do, and that is to get people to share their stories on April 2nd. The Awareness is Not Enough campaign is going strong and this is the perfect opportunity to get your story out there to the world.

If you’ve been wondering how you can best share your story, this may well be it. So email them. Their email address is in their statement above. Let’s make sure this is a mistake that they never ever make again.

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Excuse me, your Autism is showing

By on March 15, 2011 in Autism

Some people call it the “invisible disorder”, other people will say to you “your kid doesn’t look Autistic”… the plus side to this is that if your child progresses well enough and is capable of becoming independent later in life, no one ever needs to know.

The down side is that each time you hear it, you always feel a little insulted, a little frustrated… a little alone.

knowledge + ignoranceThe problem is that Autism isn’t invisible, it does show itself… other people just don’t know it.

My wife’s gym has 2 classes a week where children are invited to come along with their parents. They do exercises and dances and so forth to be active. It’s not too crowded and the music isn’t too loud so my wife decided to bring along Cameron to give it a try.

Cameron tried his heart out to do the moves that he saw other people do, he tried his heart out to have fun. But that invisible disorder that no one seems to see? Everyone saw it.

Cameron’s hands flailed as if totally beyond his control. His tongue was sticking out the entire time due to his intense concentration. He completely shut down and didn’t even try if something looked like it was something he’d never be able to do. When he got happy, he laughed well above and beyond what others did. When he got sad that he couldn’t do it, he got sad above and beyond what others did.

My wife was left wondering whether or not she is supposed to explain to the other parents why they saw Cameron differently from the other children. She was left wondering if they were quietly thinking hurtful things about her… or about our son.

Cameron had a great time and was eager to go back. He’s still young, he doesn’t see their gazes, he certainly doesn’t know what those gazes would even mean and, hopefully what will last a long time, he really doesn’t care.

Still, as I tucked him into bed that night and gave him his hug and kiss, I couldn’t help but think about tomorrow and all the days after… is this what is in store for him in all the things he will do?

Is this the result of people not being aware of what Autism really is? Is this more a case of them forgetting about Autism entirely when they see a child that isn’t “normal”? Or is it just human nature for people to feel negatively toward anyone that’s different?

Perhaps it’s just us that “feels” those gazes when perhaps they weren’t really even there, or at least, not as bad as we thought they were.

What really matters is that this invisible disorder that no one seems to see is not invisible, it’s out there for all to see every time we go some place or try to get involved in something.

I can’t make the world stop judging anyone they see as different, anyone they see as doing something that’s not quite normal… I can’t stop the uneasy feeling I get when I worry for my son having to deal with that on his own as he gets older.

One day, he will notice and he will know what it means and he will care.

All of this, and my son is considered “high functioning” at this point. That puts me at, or close to, best case scenario realm. It’s oh so much harder for those who’s children have it even worse.

Sometimes I think it would be easier if there was some visible sign to Autism. Perhaps then people would finally get it.

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Autism Advocacy – making sure we don’t lose ourselves along the way

By on March 7, 2011 in Autism

advocacy – active support of an idea or cause etc.; especially the act of pleading or arguing for something

I think it’s safe to say that most of us fit into this definition, whether we have children with Autism, having Autism ourselves or just know someone with Autism. We hit Twitter and Facebook in an effort to find out more, share stories, advice and general chit chat… and we give a voice to the disorder that is Autism.

Somewhere in our efforts, we begin to focus on the numbers and start to get off track a little. It’s not something we all do but it is something that’s easy to do and I see it often.

Counting your Friends and Followers

It’s very easy to succumb to the allure of the high follower count or Facebook fan count on their fan pages. It becomes an addiction for some people where they just need that number to get higher and higher, as if it adds to their credibility or just makes them feel more important.

I’ve said it before and I’ll say it again… I’d gladly put up 1000 of my followers against many other people’s 10,000 followers any day because the people that follow me do so because they have an interest in what I’m advocating.

I don’t employ any “team follow” strategies or employ any schemes from “get more fans” pages… I simply be myself, share my story and post an interesting link that I find here or there.

Getting thousands of followers or fans is great because it means greater advocating power but not if those people really have no interest in you or what you’re saying. Don’t go for the fast numbers.

It’s not about you

It saddens me when I see people begin to think of themselves as the victim, or even worse, egotistical when really they’re simply another advocate like the rest of us.

Granted, some are extremely wise, some are very knowledgeable and certainly some very much deserve extra attention but there’s a very good chance that those people are simply doing what the rest of us do… advocating.

No one person is above the cause for which they advocate and no one person should advocate for the purpose of praise, pity or pride. Do it because it’s your passion. Do it because it’s for the good of all people.

Advocating is not war

If advocating meant going to war for something, they would just call it going to war instead of giving it a nice term like advocating. As the definition says however, arguing is fine. It’s almost a foreign concept with the anonymity of the internet but arguing and healthy debate can be very informative and even therapeutic.

But some people take it way to far. Random attacks on people that aren’t even involved in the subject for which you’re advocating is not ok. Attacking other advocates because their specific opinions do not match your own is not ok. Declaring war on the uninformed, the naive or those that are not like minded is simply not ok.

Inform these people, debate with these people… they make take extra work on your part but making enemies is really not a good way to get a message across, especially if those people are advocating for the same thing as you.

Talk to a person, not the world

I think, and this is just me personally, that if you talk to one person and inspire them, move them, touch them or just otherwise get their attention, you’ve done your job as an advocate. If you can speak to one person as an advocate and feel that what you’re doing has real purpose… then all those numbers, all that pride and praise.. all of it will come on it’s own.

You can’t hope to speak to the world if you can’t speak to a person any more than you can hope to run before you learn to walk.

Advocacy is a very personal experience as well as a passionate one and if your goal is to share that with the world, then you had better focus on the person. Focusing on the world will dilute your attention, it will dilute your message and it will take away so much from the value of what you share.

The real beauty and value in what Ghandi, The Dalai Lama and others like them have to say is that it touches us as individuals, as though they are speaking directly to us. They’re not messages to the world for the world to do something. It’s a message to you and I on how we are or who we should strive to be.

Focus on the person. If your message is the right message, the world will hear it.

 

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Do you really want my honest opinion?

By on March 3, 2011 in Autism

It’s certainly not that those with Autism can’t find something pleasant to say, or that they’re not capable of “lying” for the sake of being nice, but chances are that if you ask for their opinion on something, you’ll get an honest answer.

First of all, I don’t want you to think I’m stereotyping here at all because it’s not my intention. However, this does illustrate how, in some cases, this is very much the truth.

Yesterday, while Cameron (5 yr old with Autism) was at school, Tyler (3yr old without Autism) was home working with building blocks at the kitchen table. He is the little hands on one, needing to have a paint brush, marker, chalk or building blocks of some kind on the go at all times… but he’s 3. He’s doing well but let’s be honest, even stick figures are a little beyond him yet.

So Cameron gets home from school and Tyler’s very excited to show off his work… he has quite the large, elaborate collection of blocks strewn out about the table, in what to him, is a nice pattern.

As soon as Cameron gets close enough, Tyler runs and says “Look Cameron!! Look Cameron! Look what I did!”

Cameron drops his winter coat onto the floor and says “it’s nothing.”

This is where my wife and I step in and ask Cameron to say something nice, to be nice to his little brother, to make his little brother feel good… yatta yatta… Cameron continues to insist that it’s nothing, that there’s nothing else to say.

So we say that if he can’t be nice to his little brother, he’ll have to play by himself for a while to which he quickly says “no!! It’s a caterpillar!!”

It’s not that I want to be mean, I knew he’d change his tune (not exactly that he’d see a caterpillar though) and I really don’t want to teach him to lie exactly but learning to share a nice word of encouragement is a pretty important skill.

This hasn’t been the first time, not by a long shot. And you never really realize just how hurtful honesty can really be when all you’re trying to do is get someone to acknowledge your hard work…  and you’re 3.

Over time, I’m sure he’ll learn to throw a “ya, that’s nice” just to avoid getting into trouble again but I also know that in the back of his mind, it’ll always be a conscious decision that he’ll have to make any time someone asks for his opinion.

When you say “be honest with me”… do you really mean it? Do you really know what you’re asking for?

If not, I welcome you to ask my 5 year old.

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My boys are never more different than when they are sick

By on February 28, 2011 in Autism

T’is the season for.. illnesses.

It’s never a fun time… either your children are sick and you’re getting no sleep or you’re sick and you’re getting no sleep or everyone is sick and… what’s sleep?

The last week now, both of my boys have been sick. I’ve been lucky enough to avoid it but having now just told the world that, I fully expect to be sick around this time tomorrow.

My oldest son is 5.5 and has Autism, as such, he tends to be pretty energetic and what you would call, pretty wild. He tends to be all over the place. My 3 year old does not have Autism and while he is also a ball of energy, he’s more controlled and less likely to be all over the place.

Introduce the flu.

3am rolls around and both boys are heading to the bathroom, neither of them is happy. Coincidentally, neither am I. I’m not mad either but I’m certainly not happy.

So the morning creeps up in my sleepless haze and I am on the phone to tell the bus driver not to stop here today and I’m trying my best to get my boys to drink some water and I can barely keep my eyes open… but as the day continues forward, something becomes very clear to me… my boys handle illness so very differently!

Cameron, my oldest, who is usually all over the place, is now fast asleep on his bedroom floor, or lying in a corner behind stuffed animals, or just laying down all glossy eyed on the couch. He doesn’t complain though. He sort of feels something isn’t right but otherwise, feels no pain. He just wants to be left alone.

Tyler on the other hand, that is usually far more controlled, is drawing on the black board, throwing toys all over the place, asking to go outside and play in the snow and really not wanting to have his afternoon nap. At the same time, he cries because his tummy hurts so much or because throwing up is so yucky. He becomes the ultimate sucky sicky.

I don’t have any profound bit of knowledge or any insightful reasoning to share with you as to why this happens but I do find it intriguing enough to write about.

As I shared these revelations with others on Twitter and Facebook, I found that I wasn’t alone in having an Autistic child kind of “shut down” when sick.

Cameron has an unusually high pain tolerance and for his entire life, even when very young, we really would have no idea when he was sick except for the fact that he’d just lay there instead of playing or doing anything.

Tyler, on the other hand, we’d know immediately because he’d cry in his sleep, before even he knew he was sick.

They’re brothers, one does something funny, the other copies… they share everything, they say the same words wrong, they want to have the same cups, pajamas, treats and games. They get on each other’s nerves but they want to be like each other.

But when an illness strikes… they couldn’t be more different.

By the way, they’re both feeling much better now which is why I’ve finally had time to write about it. But now, I’m going to crawl into bed and get some sleep!

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