Archive | November, 2011

Paint your own Autism picture

One thing that happens to me a lot, and I see this happen to others quite often around the internet as well, is that I’ll make a statement and quickly be corrected… sometimes I’m even told what to say.

For example, when I say on Twitter that Autism is neither a gift nor a curse, there’s usually someone that feels the need to correct me.  When I compare Autism to a rainbow, even making sure to include the stormy aspects… I’ve had people be downright mad that I’d compare it to something wonderful. Because to them, Autism is anything but.

I can understand that, to a point. But at the same time, I don’t think it’s anyone’s place to tell others how they should feel about something. Especially if it’s something that affects themselves or their loved ones as well.

The Incas

I don’t know a whole lot about the Inca Empire… but I did find their art work, sculptures and other artifacts most intriguing when I saw them at the museum.

What I found most interesting, however, was that there was no one artifact or piece of art work that could tell historians or archaeologists the whole story of what life was like for the Inca people.

The only real way to truly know is to take the whole tour. You go through the Inca exhibit and see so much, you learn so much and then… even then… you wonder at what it must have truly been like. Because you still don’t know!

You get bits and pieces… lots of bits and pieces… you get theories, you get stories… and you learn so much… but you still don’t know.

Museum… internet… whatever

Today, right now, our museum is the internet. This blog, that you’re reading now, is my contribution to the Autism exhibit. It’s not the whole exhibit, it’s just a piece of artwork on the wall (not very great artwork but it’s there all the same).

And I see other people’s contributions all over the place that compliment my piece, others contradict my piece, some are a whole other category of interest from mine… perhaps theirs could be considered the artifacts to my art pieces.

The fact is, there’s a lot to see and read and experience and while it gives people a lot to go on, and may give people a lot of theories, it’s still not the whole story.

But only by us sharing, all of us, can people get closer to really knowing… to truly understanding.

paintingMy Painting

Perhaps you don’t agree with my painting on the wall… maybe you don’t have any storm clouds in the distance behind a beautiful rainbow… and that’s ok too. That doesn’t make your art work any less important to the exhibit.

It just makes it a part of the story.

While it’s true that our museum could really use a better curator to organize and make things easier to find, it’s still a very wonderful exhibit with some really touching stories and people to discover.

Correct me if you feel the need to, but that won’t stop me from painting my Autism picture the way I see it.

And I hope no one ever stops you from painting your artwork the way you see it.

The visitors to our museum depend on it.

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The most important Autism social network

The dinner table.

What? You were expecting some enlightening links to sites that you finally talk to people that would finally have all the answers you were looking for?

Now, don’t get me wrong.. the advice, support and stories that I do find among the internet’s social networks have been invaluable. I’ve learned so much.

However, the absolute best place to learn, to be entertained and to get real world experience is right at my supper table.

How Dinner Used to Be

For the longest time, Cameron would be a passing visitor to the dinner table. He’d take a bit and then run off to play, or stim, or just be by himself… then he’d return for another bite and be gone again.

Many in our family questioned whether it was wise to allow that, or just generally asked why it was that way… for us, we were just happy that he would eat. If it meant taking a little extra time for him to play, so be it.

As he got a little older, his speech developed and so did his social skills. He was in school, his little brother was talking and wanting someone to play with… soon, Cameron started to enjoy being at the table dinner table.

Dinner Time is Family Time

These days, dinner usually consists of my wife and I telling Cameron to stop repeating the same stories over and over again, or the new song he learned or something of that nature and to just eat… it’s a good problem to have.

We’re often told stories about the new video game they have at school, or a new story they were told, or a new movie he saw, or something funny that one of the other children said… none of it really seems to involve actual involvement with the other kids, just what they did.

But you know what? It’ll come.

It took this long for him to actually sit down and speak to us. We can wait a little longer.

And even if it never comes, even if he never does tell us about all the things he actually does with friends…. that’s ok too.

I learn far more from listening to him than I do from any resources online. I am entertained by him far more than I am from any videos or stories I read online.

I’ll never take these dinners for granted.

One day they will fade away into memory, as my boys get older and want to be elsewhere… and that’s ok also.

That’s the great thing about social networks. They grow, they shrink, they’re always changing.

But they’re always supportive, educational, sharing and most of all, they’re always there for you.

Before you leave, let me share with you what happened during the last social gathering around the dinner table. Enjoy.

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So proud of my superhero on Halloween

Cameron is not a brave boy… that is to say, he’s easily frightened by a lot of things including heights, the dark, people he doesn’t know, houses he’s never been too… I wouldn’t say he’s a coward exactly, more so that he’s very cautious.

Perhaps a few days ago, I may have let you get away with using the coward word…. but not anymore. Now I definitely have to go with cautious. Here’s why…

Halloween Day

My boys went to school, my wife brought their costumes a little later for when all of the students were to get dressed up. They had a great time, everyone looked great and had fun.

Then, when they got home, Tyler (3) felt very sick and went to bed. He is Cameron’s little brother. He slept for hours and woke up with a fever.

The decision was made that I would take Cameron out and my wife would stay home with Tyler.

The Drive

We drive to my inlaw’s place because they are in a nicer neighborhood and my wife’s mom likes to go out with us and see all the children… while on the drive, I asked Cameron if he was sad that Tyler had to miss out on Halloween.

He said “no”.

I told him that I was sad because he’s 3, this is very important to Tyler.. getting lots of candy, having lots of fun… and for mom too because she has to miss out too.

Cameron, thinking about it, asked “Tyler won’t get any candy?”

I said “No, he won’t. He is home sick, not able to go to people’s houses and say ‘Trick or Treat!’ and get candy to eat.”

Cameron decided, then and there, that he was going to “get one hundred candies for me and one hundred candies for Tyler!”

The rehearsal

So now that we had a mission, I told Cameron that what he’s going to have to do, after he says “Trick or Treat!” is to also tell the person that his little brother is home sick and ask if we can have a candy for him too.

This excited Cameron quite a bit, and not in the “ya, extra candy!” kind of way that I expected either. He genuinely wanted to get candy for Tyler.

In Practice

So we go out and Cameron absolutely refuses to knock on the door. So I do, and after prompting, he says “Trick or Treat” really quietly… and doesn’t utter a word otherwise. I mention to the lady that Cameron has 2 buckets for candy because his little brother is home sick and Cameron really wants him to have some candy too.

He was extremely nervous… this is totally understandable and I don’t push him in the slightest. However, over the course of the next few houses, I let him know that he’s going to have to knock on the door soon.

He still doesn’t.

Finally, a house with no steps, no entry way that’s narrow… he feels ok about it and with me beside him, he knocks… very quietly.

But this was the beginning of a very successful night because from then on, he would knock on every door.

A few houses later, he did what I truly thought he wasn’t ever going to be able to work up to…

With his head down, talking to his feet in a very quiet voice, he said “Tyler is my little brother and he’s home sick.”

That was it.

And from then on out, it was his line at every house… sometimes a little louder, sometimes not… but he’d tell the person.

HeroMission Accomplished

Cameron was so very excited to fill up Tyler’s bucket and even more excited when it was a particular candy that he just knew that Tyler would like.

Upon returning home, you would think that he had just won an Olympic medal because he was so proud to run in and show Tyler all the candy and say “Tyler! Mom! I got Candy for mom and for dad and for Tyler!!”

Sure enough, most everything in there had doubles.. even the very thoughtful person that put a paper cup with a packet of hot chocolate in it for after the trick or treating.. there was two.

So in the end, I can say without a doubt that my son is extremely cautious and will likely shy away from a lot of things but he is most definitely, absolutely not a coward.

He’s our hero!

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Autistics Speaking Day – November 1, 2011

Today is “Autistics Speaking Day“, in place of what might have been the second “Communication Shutdown Day”. Sound like quite the conflicting sort of turn of events?

Last year, a group out of Australia started “Communication Shutdown Day” on November 1st where neurotypical people (those without Autism) were to sign off from Facebook, Twitter and other social sites in an effort to better understand what it is like to be non-communicative, or unheard or… well, autistic.

With all the best intentions in the world, this idea made very little sense to most people since shutting down in order to speak out was a bit of an oxymoron and also, social sites were proving to be the first real way in which Autistics could finally have a voice in the first place.

I wrote a piece last year about why I won’t be shutting down for November 1st, as did many others.. and so, it would seem, no real effort was made to continue to the project on for a second year.

ASDayBy Autistics, For Autistics

What did come of the shutdown day project, however, was a whole new day in which, autistics do the opposite of shutdown… they speak out. A day in which autistics share their struggles, celebrations, strengths, weaknesses and experiences in general with as many people that will listen.

That’s a much better use of a day, if you ask me. In fact, that would be a much better use of every day. But obviously, trying to give every day a name is a little tougher than you’d think.

Still though, a day where autistics can share with the world is a great start and far better than asking others to stop talking…. or is it?

Contradiction or merging of ideas?

Still though, when I stop and think about it… is it really that much of a contrast?

The shutdown day project asked that non-autistics stop visiting their social networks and to go silent… which all by itself really is a dumb thing to do.

However, in conjunction with “Autistics Speaking Day”… it’s starting to actually make a lot more sense to me.

If autistics can have a day where they can speak their mind, tell their tales, share their experiences and speak their mind… free of judgments or criticisms from others… well, the whole thing starts to make a lot more sense.

Maybe if “shutdown” was changed to “shut up and listen”, then the two days truly would be the same thing, rather than opposites. Instead of abandoning social networks, if we were encouraged to seek out social networks and find as many autistics as we can that are sharing something today and just listened rather than putting in our own 2 cents…. maybe November 1st really wouldn’t be all that different from what it was originally supposed to be… maybe it’s just an extension of it.

Perhaps if autistics make an extra, and sometimes difficult, effort to open themselves up to the world and share their experiences and thoughts on Autism, and everyone else made an effort to set aside an hour or two to seek those autistics out, and really just listened, we would finally have a day that made perfect sense.

So, if you have Autism, I encourage you to take part in “Autistics Speaking Day” today, November 1st.

And if you do not have Autism, I encourage you to seek out some autistics on Twitter, Facebook or even in good ole Google search and spend a little time reading today.

The more that is shared and the more people listen, the greater the opportunity for understanding and acceptance for all people with Autism.

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