Conversations with the boys today

I thought I’d share a couple of examples of what conversations are like with my boys… both of these examples happened just this morning.

Conversation #1 – I want to be the grown up

While watching cartoons, Cameron saw an episode where the kids wanted to be the parents and the parents had to be the kids. As you can expect, it didn’t go so well. However, this idea intrigued Cameron enough for him to want to try it… his top priority, video game time!

Cameron: “Dad, we’re going to be the grown ups and you and mom will be the kids, ok?”

Me: “Ok, so you’re going to work all day long then?”

Cameron: “Yup, and you go to school… but then I get to play video games.”

Me: “No you don’t. After work, you have to make supper for everyone.”

Cameron: “but then I play video games?”

Me: “No, after supper the kids get to play video games… that’s me.”

Cameron: “but then I get games?”

Me: “No, after that, you have to give the kids a bath and then bed time.”

Cameron: “And then I get games right?”

Me: “No, then you have to do dishes, clean up and do more work and then go to bed.”

Cameron: “oh… ”

Me: “You might want to reconsider being the grown ups Cameron. Trust me, you get way more video game time than I do.”

Cameron: “ok ok ok… we’ll keep being the kids.”

Conversation #2 – Which colour is your favourite?

Tyler wanted to play trains with me after Cameron got on the bus, so he got a train he wanted and then wanted to be the big helper by getting me a train as well. Holding the blue train in his hand, he looks over at me….

Tyler: “uh.. Dad? What’s your favourite colour? Blue or…. red?”

Me: “Red.”

Tyler looks through the trains, can’t find a red one. Comes back to me…

Tyler: “uh… Dad? What’s your favourite colour? Blue or… orange?”

Me: “Orange.”

Tyler looks through the trains, can’t find an orange one. Comes back to me…

Tyler: “Dad? What’s your favourite colour? Blue or… purple?”

Me: “Purple.”

Tyler turns to the trains, gives it a quick glance and then comes back to me.

Tyler: “Uhmm… what’s your favourite colour? Blue or… pink?”

Me: “Blue”

Tyler: “No, sorry… you can’t have blue, this is my train!”

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Loving Lampposts: Living Autistic – This is why you must watch this documentary

If you’ve seen the HBO movie Temple Grandin, based on the woman of the same name, you probably came away quite enlightened. Even “experts” could watch that film and come away feeling like they have a new, or at least enriched, way of looking at Autism.

Any new insight you could gain from that film will seem pale in comparison to what you’ll get from the latest documentary on Autism called Loving Lampposts: Living Autistic.

Overview

Loving Lampposts: Living Autistic

Of all the controversies or issues dividing the Autism community, they all boil down to two larger groups. Those that feel that Autism needs to be cured and those that feel that Autism, while a cause for struggle sometimes, is a part of who Autistics are.

Loving Lampposts opens and closes with Sam, an adorable little boy that visits his favourite lampposts in his favourite park every single day. The story in between is a journey taken by Sam’s father, Todd Drezner, in an effort to talk to parents, experts and people with Autism themselves and find out what Autism really is and should it be cured or embraced?

I don’t want to spoil it too much for you but chances are you will enjoy this movie no matter which group you may find yourself in. For the most part, half of the film is talking about curing Autism while the other half is about embracing it but at no point do you ever feel like there’s a break in the flow nor is there anyone trying to convince you to change your opinion.

Curing the Autism Epidemic

In the film, you’ll be introduced to several doctors from Defeat Autism Now (name has recently been changed to the Autism Research Institute) as well as many parents, including Jenny McCarthy, who believe that vaccines and other toxins are responsible for Autism in our children.

Also, along the way, you’ll be introduced to a lot of treatments that they use in treating their children.

Also discussed is the word epidemic and how it’s used in relation to Autism. In this portion of the movie, there’s a really great reference to the FedEx logo, that I feel, is a wonderful eye opener. I’m sure you’ll agree when you see it.

Neurodiversity – Just a Different Way of Being

You’ll also be introduced to several doctors and parents that feel that Autism may or may not be medical, may or may not be psychological… they don’t know.

What they do know is that, and I quote from the movie “I’ve never met one Autistic person I didn’t think was a beautiful person.. just has such a beautiful soul.”

Furthermore, you’ll be introduced to several people with Autism themselves, some are verbal and some are not, they are all different but you will hear from them all. Whether speaking to you or using a device that speaks for them, they share their frustrations and their thoughts on Autism, cures, neurodiversity and more.

Summary

If the Temple Grandin movie enlightened you, then Loving Lampposts: Living Autistic will give you far more insight into Autism and the Autism community than you had previously, no matter who you are.

Even the most seasoned Autism advocates may list off all of the things they have already heard before but will still come away from this movie with a broader sense of understanding.

In the end, as the film closes with Sam visiting his favourite lampposts, you get a very real sense of just how much his father has learned from this journey, not just about Autism, but his own son as well.

And with this film, he brings you on that journey so that you too, can learn the same thing for yourself. And you will.

Buy it

Want to buy the movie? Want to get a discount?

From now until May 28, 2011, you can get $3 OFF the Loving Lampposts DVD by entering coupon code: lamppost

Go here to buy the movie now!

Quotes from the Film

Autism is a gift, disguised as a dilemma. – Sharisa Kochmeister (a nonverbal adult with Autism)

They tell me that Sam’s love of lampposts is Autistics behavior and that I should try to get rid of it. I can only say that love is not what makes us sick. It is, we’ve always been told, what makes us human. – Todd Drezner (film maker)

You haven’t got a big enough imagination for what your child could become – Johnny Seitz (adult with Autism)

There is an tremendous amount of emotional power connected with the idea of doing something, of acting. – Roy Richard Grinker (Author of Unstrange Minds)

We’re primed to see Autism more than ever before and despite all the negative hype, this may actually be good news. – Todd Drezner

I think some of the key aspects, what we would today term, as an intensive home based, early intervention program emphasizing music, movement, sensory integration, narration and imitation. They started to imitate me and once they did that, I became aware of them in my environment. – Stephen Shore

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Here is how a small donation may get you an Ipad

iPads have become the go to device, not just in every day life, but also in treating Autism. So much so that there was actually a segment on Autism in Apple’s iPad 2 launch video.

If you know all of this already, then you probably have heard of Shannon Rosa and her son Leo. If you haven’t you should start here: iHelp for Autism.

Shortly following that, Apple was in their house filming that launch video that I mentioned just a moment ago. Yes, it’s Shannon and Leo in that video.

Now they’re giving you the chance to win an iPad in a raffle just as they have… not only that but it will come preloaded with a bunch of their favourite Autism apps.

Visit Leo’s ipad Raffle at http://www.crowdrise.com/leosipadraffle and make a small donation to the Autism Science Foundation, $10 will do… or more if you’re so inclined.

Each $10 will get you a raffle ticket that goes towards your chance of winning the iPad.

Imagine, an iPad, lots of great apps and all it costs is your donation of $10 towards an Autism charity. It’s kind of a win/win/win situation.

Hurry though, the raffle ends on April 29th at 12pm PST. The draw will be at 1pm PST that same day using random.org.

For more information, visit her blog post about it: Leo’s iPad Raffle

And for more about Shannon Rosa, visit her sites Squidalicious and The Thinking Person’s Guide to Autism

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The problem with the expression “Different, Not Less”

When I saw the Temple Grandin, HBO movie, I, like many other people, quickly adopted the phrase “Different, Not Less.” It’s such a powerful statement.

Completing the spectrum

Completing the Spectrum

If you’ve followed this blog for any solid amount of time, or followed me on Twitter or Facebook, you know that I’m a rather large endorser of understanding and acceptance… the idea that those with Autism can be better served by taking the time to understand them and the spectrum of Autism itself.

Early on, as I tried to piece together all of my thoughts and ideas into this “Understanding and Acceptance” campaign that has really taken off, I began to realize that there is an inherent danger in trying to “normalize” Autism too much.

Different is not special

The danger is this… different doesn’t get insurance coverage. Different doesn’t get sensory friendly movie times. Different doesn’t get services until they’re 18, much less into their adult years.

I recently wrote about the pitfalls in defining Autism which touched on this, as some parents tried to persuade me that “disorder” was too negative to use and that we should find a kinder word.

It really bothered me that these parents were essentially hindering their own chances at getting the help they so desperately needed.

Backlash against PBS and Autism Now

I’ve been reading on Twitter how some people are quite upset at the statements made during the six part series and understandably so, some statements were a tad harsh.

But at the same time, we’re trying to get the world to wake up, stand up and take notice. Not just of how great people are even though they have Autism, but also, of just how hard it can be.

Let’s be honest, a 6 part series on Autism that paints everyone as a savant, or perfectly capable independent functional part of society… won’t do much to raise proper awareness and certainly won’t go very far in helping us parents explain to other people in the grocery store why our child is having a meltdown.

It might not have painted a very pretty picture, but it wasn’t a false picture either. It just wasn’t “all encompassing” of the entire spectrum.

The Talk and Holly Robinson Peete

The Talk did a wonderful series on Autism itself, a 4 part series, airing on each Friday of the month of April. This was a very real and very honest look at Autism as well but it painted it in a nicer picture… certainly not as dark and dreary anyway.

I haven’t found much of a backlash about it, no one seemed to be upset. Which is kind of funny I guess, because I half expected that perhaps folks with severely low functioning children might.

But those people probably just felt more left out than anything, nothing really to get furious about and certainly not worth writing articles and filling up Twitter time lines about.

Personally, I like to think of The Talk’s series as a nice Yin to PBS’s Yang… if one series can’t possibly cover all sides of the Autism story completely on it’s own, then why can’t two series split the task?

The Whitehouse calls it combat

Now, if the PBS series had upset you, then how do you feel about the Whitehouse’s plan to reauthorize the “Combatting Autism Act”? Is it really war they think they’re heading into?

The legislation, first passed in 2006, tremendously expanded federal funding for autism, allocating millions of dollars to improve diagnosis, treatment and research of autism spectrum disorders.

Really, that doesn’t sound so bad… so as a suggestion to President Obama, consider changing it’s name. Please.

Conclusion

Parents and even those with Autism that are higher functioning, Aspergers for example, are trying to fast and too hard to push passed understanding and going straight into acceptance.

There’s a very real danger in doing that… those laws won’t be reauthorized, the insurance agencies will not cover any therapies or treatments and there will be no more services out there for you.

I’m not saying that there is not a need for acceptance, there is. More of it… lots more of it. However, it has to be done properly and in due course. First, there needs to be understanding.

Understanding is what makes the system work for you, not against you. People need to be aware of the stereotypes, people need to be aware of the really bad stories… because as much as we might not like how bad of a “picture it paints”, it’s not untrue.

We can’t hide away the bad stuff in an effort to force everyone to accept people with Autism as just a little different. That simply will not work.

Don’t try to call it something else. It’s a disorder. It really is, even if it sounds negative. Don’t try to hide away the stereo types of those not as fortunate as yourself…. those people need to be seen and heard, even if it’s not an accurate representation of what is in your life.

My son, Cameron, is doing just fine and I have no reason to doubt his future at all. But I’ll never sugar coat Autism just so that people will have a warmer and fuzzier feeling about it. No, what he has is a disorder… because so long as I believe it and everyone else believes it, the help that we need will be there.

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Quick to improve, Quick to regress, Quick to forget

I make no secret about it that my son (Cameron) has been making great progress… he’s even reading from a Dr. Seuss book now. But again, this brings up the inevitable conversations with people, including family, where they ask us if ever had Autism, or compare him to other children.. of differing ages!

In this case, it was a discussion about a daycare worker we knew that took care of Cameron before we had him diagnosed… she was wondering why we stopped taking him there after the diagnosis if he’s so well behaved.

Well, the thing is, he’s almost 6 now… back then, he was around 2. The differences are astronomical between a 2 year old and a 6 year old child to begin with but when you add in years of Autism therapy and treatments… let’s just say that there is no comparison.

It wasn’t that the daycare worker wasn’t great, she was… but after the diagnosis, we realized just how much one on one attention he’s going to need… specialized time at that, and a daycare worker just doesn’t have that kind of time or energy.

Big SpectrumAnyway, the point of all of this is that it brought up the topic of how people with Autism can improve and regress, sometimes extremely slowly and sometimes it’s seemingly over night. Not only that, but the amount of improvement or regression can also vary greatly.

Granted, we all have good and bad days but for someone with Autism, it can be extreme. A child progressing well and speaking and being social can regress suddenly to the point of being completely non-verbal, aggressive, disconnected and so on.

On the flip side of the coin, a non-verbal child that seems completely disconnected from the world can discover their voice one day, perhaps even discover the ability to recreate classical music just from hearing it, or draw a completely detailed city from memory.

These things can happen over the course of many years, or they can happen over night. It can be a regression such as being miserable one day or it can be a total loss of communication skills. It can be an improvement such as learning to say thank you…. or it can be like going from non-verbal to having an IQ greater than Einsteins.

You just have to remember that the regressions are not your fault… the improvements might not mean having a savant in the family but never dismiss them, no matter how small or how slow.

It can be so very hard for people to learn what a huge spectrum Autism really is but it’s so very easy for people to forget that an Autistic’s place on the spectrum can change from day to day.

Don’t judge my son now based on how he was years ago, or even a day ago, and don’t judge how he was a day ago based on how he is today… and don’t assume where he’ll be tomorrow either.

I’m going to work hard on keeping those improvements coming but my focus will be on the here and now. It’s who he is.

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