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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Happening right now, it’s still Autism Awareness Month

I’ve been receiving a lot of emails recently, people offering me copies of movies, products to review, information on charity events, surveys or new book launches… it’s very obvious that it’s a busy month in the Autism community!

Short Survey

The Autism Program of Illinois (TAP) is conducting an online poll concerning autism awareness and government policy. It’s only 3 questions, so please take a moment to give your input here: http://www.theautismprogram.org/

Autism and Golf

On Saturday, April 30, the Tucson Autism Community Center is hosting its annual Autism Charity Golf Classic at the beautiful Tubac Golf Resort & Spa. The special guest will be Rodney Peete, NFL veteran quarterback and author of recent acclaimed book, “Not My Boy! A Father, A Son, & One Family’s Journey with Autism.” The book highlights Peete’s family’s experiences raising a child with autism and is told from the often unheard point of view of the father. All proceeds for the event will benefit the Tucson Alliance for Autism (TAFA). The weekend will incorporate other autism-related events as well.

The tournament will take place at Tubac Golf Resort & Spa, a luxurious hotel with a state-of-the-art golf course (“Tin Cup” was filmed there) and world-class spa.

http://www.tucsonallianceforautism.org/

http://tubacgolfresort.com/

Big Daddy Autism wrote a book!

The truly remarkable part is that it’s not in crayon… there are some cartoons though.

This book takes a look at Autism from a father’s point of view but it also incorporates humour as it demonstrates that there really is a lighter side to Autism sometimes.

The book includes some of his blog posts from http://www.bigdaddyautism.com, some of his cartoon work as well as contributions from many other parents around the Autism community.

Read more about it and buy it here: Big Daddy’s Tales From the Lighter Side of Raising a Kid With Autism

 

Big Daddy's Tales From the Lighter Side of Raising a Kid With Autism

Big Daddy's Tales From the Lighter Side of Raising a Kid With Autism

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Autism awareness? I live it every day

Not a lot makes me cringe more than seeing/hearing/reading a parent of a child with Autism say that they don’t bother with Autism Awareness Day/Month because they don’t feel they should tell others about Autism since it doesn’t affect them.

autism awarenessI’ve read more tweets and posts this month than I’d like to from parents giving a multitude of excuses why they haven’t gotten around to it, or haven’t bothered or feel that they simply shouldn’t attempt to raise awareness of Autism… and that’s kind of sad.

How can a person recognize the signs in their own child unless aware?

There’s a lot of debate within the Autism industry as to whether or not numbers have risen (at least in part) due to the fact that people are simply more aware of what to look for, recognize it earlier and thus, are more likely to get an official diagnosis.

There’s good reason for that debate.. it’s because it’s true that greater awareness is what leads to people being able to understand why their child won’t look them in the eye, doesn’t respond to their name, doesn’t talk yet, separates their blocks by colour and lines up their toys in a perfectly straight line across the living room.

Finding the support and information they need

After a diagnosis, most parents feel extremely lost as they’re put on waiting list after waiting list and worse than finding no answers, they find a lot of contradicting answers.

If you and I didn’t speak out, and speak loudly, they’d never find us. And if they never found us…. well then, they truly would be alone.

Waiting lists don’t explain to parents the benefits of weighted blankets, the gf/cf diet, the necessity for strict routines, how to handle IEP meetings and so on and so on.

Will your child forever be a freak or will people understand him/her better one day?

How can we expect parents to stop judging us and our children during those grocery store meltdowns if they never learn about Autism? How can we expect our childrens teachers to have more patience or even recognize the signs themselves? How can we expect more random people to step up and offer gymnastics, swimming, skating and other community type programs just for our children with Autism… simply because they want to help?

People won’t just look at your children differently… they’ll look at them as weird, freakish or even worse because if they’re not aware, what else are they supposed to think?

Conclusion

No, maybe the meltdown happening in your living room isn’t anyone’s business but that of your own family but that shouldn’t mean not raising awareness at all.

By not doing your part, you may be leaving one troubled child undiagnosed… you may be leaving one parent lost with no one to turn to… you may be letting some innocently ignorant person incorrectly judge another person, making them feel like a terrible parent.

Worse than all of that, you are indirectly affecting your own child’s future because one day your child will have to face those people you didn’t bother to share your burden with and those people won’t understand him/her. Those people will judge your child and judge them harshly.

They say that if one person recycles everything, little change is made in the world but if everyone recycles just one thing, a very significant change is made in the world.

Same goes for Autism Awareness. You don’t have to get on national television or scream from the rooftops… it’s not about invading people’s lives. It’s about sharing so that those that want to listen, those that want to hear it, those that seek it out… can find it.

You may live it every day and those you’re attempting to educate don’t… but maybe they will one day. And maybe, just maybe, your voice will be the voice that makes a positive impact on their lives that lasts a life time.

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