Tag Archives | learn

42 days ago

By on October 6, 2011 in General

I’ve been wrestling with myself about whether or not I’d write something about Steve Jobs… everyone else is doing it, people must be getting tired of it by now… but I really, really…. really wanted to say this.

I am not a “fanboi”, as they’re called… meaning I’ve never stood in line to buy an Apple product, I have only ever had a couple of Apple products in my life. But that doesn’t mean that I can’t see the impact that Apple, and of course, Steve Jobs, has had on just about every aspect of our current lives.

Especially being in the Autism community where the Apple ipad inadvertently opened up the world of Autism to a whole new way of thinking.

But this is not a post about Steve Jobs or his products.

The answer to life, the universe and everything

If you’ve never read the Hitchhiker’s Guide to the Galaxy, I have to explain this to you because it’s a bit of a very interesting coincidence.

In the book, some super beings ask a supercomputer for “Ultimate Answer to the Ultimate Question of Life, The Universe, and Everything“, it calculates for 7.5 million years before reaching the final answer…. 42.

Why is this a coincidence?

The number of days between Steve Jobs retiring as Apple’s CEO and his death? 42

Working Living until the very end

steve jobs

by Lea Suzuki of the San Francisco Chronicle

The reason that his death came as such a shock to people is that, just a month ago, he was still at Apple, steering the ship.

That just doesn’t happen. You see, people tend to leave work once they get sick. They find out that they have months or even years left, they’re weak… so they step away and make the most of the life they have left.

Not Steve Jobs.

When I first thought about it, I admired how he worked right up until the very end.. or at least, a whole lot closer to the very end than most others would ever do.

I quickly corrected myself though, because the very fact that he was there until the very end was indication enough that to Steve, it wasn’t work. We already knew that though, in that he always professed to love what he did and told others to do what they love. And he proved it all the time.

Some would say that he was a natural at giving his presentations and a marketing genius… I think he just genuinely loved his work. He was proud. That sort of enthusiasm and excitement can’t be faked.

If all of that isn’t proof enough that he loved what he did… 42 will forever be proof enough for me.

He was there because he really was making the most of the life that he had left.

Do not do, be

In the short time since his death (less than 18 hours ago now from the time of my writing this), there has been a constant stream across all social networks of inspiring thoughts, phrases, paragraphs and even entire speeches of his and it’s truly great to see.

But all of these great things he said, he didn’t just say them, he didn’t just do some of the things he said… as many of us will try to do, he was those things. He lived it.

“Stay hungry, stay foolish” is how he finished his speech at Stanford in 2005. Inspiring words, great thought… but how many of us will live that way from here on out?

He did.

There are a LOT of very wise and inspiring quotes of his that I could list out here, the fact is… none of them will do you any good unless you live them. Don’t just agree with him, don’t just believe the words he says… live them.

Here is the video of that speech, please watch:

Here’s to the crazy ones

This commercial from 1997 was never aired. It was narrated by Steve Jobs and has the tagline “Think Different”. If this doesn’t give you a sense of how Steve Jobs’ mind worked… nothing will:

Why did Steve Jobs identify with the people in that commercial so well? Why did he deserve to be included with that list of people?

Because he lived it. He didn’t just say the words. He didn’t just believe it. He lived it.

Impacted our lives

I see a lot of people writing about how his products have impacted our lives, how his thinking has impacted our lives… what I truly love reading are the posts from Silicon Valley from people who became great people in their own right, because of how Steve Jobs impacted their lives far more than a new iPhone ever could.

I don’t need his products to feel his impact. And that’s the beauty of what he was able to accomplish and the true testament to who he was.

I want to live my life as he lived his… doing what I love. I want to do what I enjoy doing until my 42 comes.

More so than that, I want the same for my children. You see, Autism or not, I want my children to find what makes them happy and then to do it. But as a parent of a child with Autism, it’s even more paramount as one of the defining characteristics of Autism is that autistics can excel quite profoundly so long as they’re able to do what it is that they love.

Trying to force someone to conform, in other words, to put a square peg into a round hole, simply does not work. Not with Autism, not without Autism.

“Your time is limited, so don’t waste it living someone else’s life.” ~ Steve Jobs

His products changed the world.
His innovations improved our lives.
His lessons inspire us to carry that forward.

The man did not die.. he became legend.

42

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Recognition for the caregivers in the Autism community

By on September 27, 2011 in Autism

There are a lot of discussions all over the place about non-disabled parents of disabled children, disabled parents of disabled children and those that are disabled without disabled children… who can and can’t understand what, who can and can’t advocate what, who’s voice holds more weight… on and on and on.

These things will be worked out over time, hopefully all mutually agreeable and beneficial… a world of peace, love and happiness for all on the horizon.

However, those not being discussed, and I think really should be, are the care givers.

Not part of a community?

caregiverOne day, discussing Autism related issues on Twitter, a woman replied with a rather insightful comment and then was quick to apologize, as she really had no place to get involved in such a discussion.

You see, she is not autistic nor does she have any children with Autism.

What she does have is an amazing amount of love and wisdom within her that had, for the most part up, until that point, been quiet.

As a woman who has cared for many children with Autism and continues to care for children with Autism, she does not feel as though she is a part of the Autism community.

She reads all of the books, the studies, blog posts, she attends seminars and even went to school specifically to do what she does… but she feels that she has no voice because it’s not her place.

To me, that’s not just a shame, that’s a tragedy.

What one has vs what one does not

You see, I have a great deal of respect for those with Autism and those who have children with Autism because they have a lot thrust on them against their will. They are kind of thrown into the deep end of a life that they likely didn’t expect and may not even want (some of them).

They are forced to educate themselves, to research everything they can… they even have to learn to love themselves in ways that many people don’t.

I’m talking about both the parents and the autistics themselves. It’s a struggle for both. It’s big, it’s scary and it’s wonderful too… it’s different for everyone but it’s big all the same.

Care givers (most of them) don’t have that. They don’t have the life changing diagnosis for themselves or their children. They don’t have that cycle of denial, acceptance and all the other emotions and epiphanies that many of us have.

A care giver has to want it, they have to love and they have to need it.

For many parents and even autistics, this will likely be a very foreign concept as most people would never want it, much less need it.

But these care givers do. They do the research and the seminars, they do the schooling and the reading because it is what they want to do and it’s what they love to do.

When it’s not you…

For me, personally, when I really stop and think about it, I’m in awe. Because I know that I wouldn’t have the same patience level for other people’s children… especially if I didn’t already have an autistic child myself. I also know how I feel when I meet other parents that not only parent differently but do things I simply can not agree with, do things that are detrimental to their child’s development…. these care givers face that almost daily.

Care givers have to work with those parents, they have to deal with the non-verbal, aggressive, non-toilet trained children that are not their own and that have parents that either don’t understand, don’t know what to do, don’t care or… hopefully, do all the right things but simply need help.

And yes, I know you’re going to hate the “deal with” part of my last statement but remember, this is a care giver who loves those children. But it’s still something they have to deal with. It’s not their children, it’s not a life that was thrust on them.

I often write about how much patience I have thanks to my son, how we all become such better people thanks to our children and all of the wonderful things that having an autistic child can teach you…

But these care givers have more patience than I do… and they already knew all of those wonderful things before I did… it’s in them. It’s always been in them. They always were the better person that I’ve been working at becoming.

What’s in a voice?

I am very proud that woman spoke up and I am very happy she did too.

No, she is not autistic and not a parent with an autistic child, she’ll never “truly know” what it’s like to have Autism or a child with Autism… but that’s what makes her perspective an important one. One that I value.

Perhaps she will never blog about having Autism nor will she blog about what it’s like to raise an autistic child but when she does talk about Autism, in what ever form she does…. I’ll be sure to listen.

Because she came to us… and because she loves it. And without her and people like her, we wouldn’t have come as far as we have.

She sees children learn to speak, she sees children do amazing things! She works with them, she plays with them, she hurts when they get hurt and she celebrates their victories.

In conclusion

What I’m trying to say is, if you’re a care giver but feel it’s not your place to give any input or an opinion… I’ll listen to you.

Even if we end up disagreeing on something, I’ll listen to you.

Chances are though, I’ll likely learn something and I’d hate to miss it.

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Autism blogging – pro tips from an amateur

By on September 21, 2011 in Autism

I thought I’d change things up a bit with this post, rather than writing about Autism itself, I’d answer a rhetorical question I get a lot. Yes, I know rhetorical questions aren’t really meant to be answered. But in this case, I think it makes for a good blog post.

What is so different about your blog?

blogThe honest truth is that I’m really not that great at writing, as some people continue to try to convince me. It’s just that I always try to keep some key things in mind as I write, which has come to serve me rather well.

Here are some basic rules that I try to follow:

Never assume the reader knows me or my children

I treat every single post as if it’s the first post that the reader has ever read of mine. I do have a lot of subscribers and other returning readers but I also have to keep in mind that every single day (hopefully), there will be new readers too. That means that this blog post right here is being read by someone that hasn’t read a single word from me before today. Maybe it’s you! Welcome.

I sometimes allude to a bit of my back story and will often put in links to previous blog posts that covers that back story more in depth. That way, if someone already knows it, they can skip it and if they don’t know, they can either go and read it for more info or they can just skip it, being satisfied with the small bit I shared.

It also means that not every single reader knows my boys… so I always make sure to add in a little about them each time I mention them. For example, Cameron (6yrs old, has Autism) and Tyler (3yrs old, without Autism).

This way, a very short and little burst of info and presto, people now have what they need to know as they continue reading from there… whether it just be the rest of this post or any new posts they may read of mine from here on out.

“Never” and “Always” are two words you should always remember to never say

It’s a funny sentence but in this case, an accurate one. In the world, especially the world of Autism, there is no “never” or “always.”

No thought, feeling, experience, belief or anything else is 100% consistent for all people that will read what you write. This is especially true when you hit hot button topics such as person first language or vaccines.

But it’s also true on even the most trivial and mundane of topics as well. You could write about something cute your child said or did and the moment you try to suggest that everyone would feel something, or no one would think a certain way…. you’ll find yourself being corrected.

It’s much easier to simply assume that absolutely nothing… and I mean nothing… is going to be a mold that everyone fits into. No treatments, no symptoms, no experiences, no thoughts… nothing.

Be careful to use “some” or even “most”… and when you do, add in “in my opinion” or “in my experience”… because, if you were to be honest, that is the truth. When you make assumptions for others, you do it based on what you know, in your life. So maybe, in your experience, most people would do or say something, but that doesn’t make it true of all people… right?

Also, keep in mind that people with Autism, especially children, are not all Aspergers or HFA (high functioning autism)… and likewise, don’t assume that all parents have children that are non verbal, unable to toilet train or other “more severe” effects. It’s easy to get caught up in our “own little world” but as we right, we have to ensure that other parents can either still relate to what we right or to understand what position it is that we’re writing from.

You’re not writing a book

This encompasses a bunch of tips… first of all, keep in mind that if you’re primary target audience consists of Autism parents, as mine does, chances are they don’t have a ton of time to devote to a blog post. In fact, yours is probably just one of several that they’ll be visiting today. So keep it to a reasonable length unless you’re writing something really really important.

You might not think you need chapters, since it’s not the size of a book, but that doesn’t mean that you shouldn’t section it out. Take this post as an example… I could have put all of these tips into bullet points and then plowed out a big wall of text to go over them, but sections just makes far more sense. A reader likely doesn’t have all the time in the world and will have to skim your posts quite a bit, so you might as well make the job easier for them.

Even if you don’t feel the need for sections, you should still keep in mind that as a blogger, you do have other tools at your disposal. Such as making important points bold and using italics sometimes as well never hurts. Most of all, if you do find yourself staring down a big wall of text, maybe you should try splitting up your paragraphs a bit more.

I like to split up thoughts into different paragraphs, even if they’re just sentences. If I read it out loud later and find that I take a breath and start a new train of thought, I break up the line so that visually, the reader will be able to do it naturally.

Other general blogging tips

Aside from the things I’ve mentioned, I also follow other general blogging tips that you will likely find on just about any blog about blogging… regular updates, lots of proof reading, writing about what I know… all that juicy goodness.

There’s 2 other things that I do that have been invaluable…

1. I tend to get ideas from other people, whether it be conversations, other blog posts, comments or just about anything… one idea I had was from an off topic remark on a home and garden show! When that happens, I quickly go to my blog and start a new post with the general idea of the post and save it to a draft. Having the WordPress mobile app on your phone or iPad is especially handy for this.

Chances are I don’t have time to write it just then and there… so a draft comes in really handy. This is especially handy when I find myself without ideas later… when my blog is needing a post, due to lack of updates, and my mind isn’t coming up with ideas, I can hit my drafts and find some good topics that I never got a chance to return too.

2. Sometimes as I write, I find that my blog post just isn’t turning out how I’d like or I’m simply not happy with how I’m wording things and know that it won’t be as well received as it should be.

When this happens, I hit the “Save Draft” button and call it a night. Not only have I found no harm in sleeping on it.. but most of the time, almost every time in fact, I find it hugely beneficial. When I return to it later and read it back to myself, it comes to me so much easier.

It may mean putting off a blog post a day, or maybe even a while if you just don’t get back to it for a bit… but that’s ok. It’s always there and it’s always usable.

For what it’s worth

Now, all of this I share knowing full well that it’s a take it or leave it post… I am not an expert, I have not been doing this for decades or anything. I don’t even have all that many readers, in comparison to many other blogs.

These are simply the methods that I use. They’ve served me well in the past.

If you have any more thoughts or tips that you use, please feel free to share in the comments. I’m always eager to learn and improve!

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If I had Autism

By on August 23, 2011 in Autism

questionsAs I see parents writing articles on what Autism is, or how to describe it, I wonder how many of those people ever asked themselves what it would be like if they had Autism themselves.

Have you thought about it?

I have.

These are just some of the questions I asked myself:

  • Would I see the sounds I hear?
  • Would it be beautiful? Would it be painful?
  • Would I feel the ridges of my finger prints when I rub my hands together?
  • Would I feel anything at all?
  • Would people expect me to have special skills?
  • Would people expect me to have no skills at all?
  • Would I speak the same language as everyone yet still not understand anyone?
  • Would I be unable to speak any language but understand everyone perfectly well?
  • Would I require constant control over myself and my environment?
  • Would I lose control easily?
  • Would I really need hugs?
  • Would I really not want to be hugged?
  • Would I notice the flicker of a fluorescent light?
  • Would I not notice the dangers all around me?
  • Will I be loved for who I am?
  • Will I be hated for who I’m not?

Even though some of these pairs seem like opposites from each other, would I still answer yes to both? Would my answers change from day to day?

Would I be able to explain these things to other people? Would I want to?

Would I be me? Would I be less than me? Would I be more?

There’s so many more questions…. I quickly find myself becoming overwhelmed by it all but strangely, as much as I’ve thought about this a lot, it never really hit me like this until I asked myself…

If I had Autism…

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Should you tell a stranger if you suspect their child may have autism?

By on August 2, 2011 in Autism

Recently, the folks at Babble.com asked the question “Would you tell a stranger if you thought her child might be autistic?”

parentsDepending on your convictions, you would likely answer it pretty quickly, one way or another but after putting some more thought into it…. well, let’s just say there are some very good arguments for saying yes or no.

As an example, let’s say you go to a community event where you meet new people and all of the children are playing. One child is not playing with the others, aligning toys in a row, making repetitive actions and the mother seems oblivious to any of this. She just thinks that her child is going through a phase or is “quirky” (we’ve all heard that one, right?).

Do you say something to her?

I’d like to go over some of the thoughts on this:

It’s none of your business

One of the most obvious answers and likely to be the most common is that it’s none of your business. They’re not friends, family.. you don’t know them. If they don’t know, that’s their problem. Let them figure it out in due course.

In theory, if you believe in that sort of thing, everything happens for a reason. If you interfere, you may be altering their course which could have been set for a reason.

But then one could argue.. perhaps you were there, at that time, to witness the autistic tendencies as part of that “everything happens for a reason” path and you were meant to say something…. hmm….

Either which way, is it your place to be making such assumptions of other people?

Will she be offended?

Most of us would assume that acting on behalf of your best interests would be a welcome and appreciated action however we all know better. Parents don’t appreciate other people pointing out their children’s flaws, much less giving them a label… certainly if that label is associated with a disability.

Some parents would even go so far as to hear “retard” in the place of “autism” and be ready to fight you for saying such a thing. Rightly so, the “r” word is not acceptable but many people still think that it and autism are the same thing.

Early intervention is passing them by

With every day spent in this “phase”, they miss valuable opportunities at getting treatments, therapies, financial aides, a shot at school support (IEPs) and so on. They are letting very valuable time slip by which means that in this case, ignorance is not bliss.

We all know the motto and there’s even a news story now that explains it well in terms of insurance coverage: Pay Now or Pay Later

Indeed, it is true. If that mother makes no effort to help her child…. what will the child’s future be like? If you don’t say something… their future could cost them a lot more than what some therapy would cost them now.

Are you certain of their situation?

If it’s a total stranger, chances are you don’t know. This person could be in denial, which means they know but don’t accept it, they could know but just not want to tell others (“a phase” sounds so much nicer than “disorder”) or this person could truly just be oblivious.

You really don’t know.

You also really don’t know if it’s actually Autism. Perhaps it’s something else (yes, there are other disorders which look similar). Perhaps, and this may shock you, it actually is just a phase. Yes, these things can be a phase in some children that they just move on from.

If you’re not a trained professional, and even then, it’s iffy, is it really your place to make all of these assumptions about their situation?

A responsibility to each other and our community

If you saw someone about to put their hands into a wood chipper… and you knew they’d lose their hands and struggle for the rest of their lives from that moment on… would you do something to stop it?

Do you have a responsibility to help others? Well, in the case of physical harm or death (dangerous situations), yes you do. In fact, you could be arrested and charged if you do nothing…. unless you’d be putting yourself in harms way to do it. Anyway.. you get my point.

In this case, it’s obviously not that black and white and Autism certainly isn’t life or death (although some would argue that with the number of wandering cases in the news continuing to increase).

But for the future of that child, maybe even the parents (if the child remains dependent for life) and even for the community around you that may have to pay for this child should he end up in a care home… if you say something now, you could help avoid all of that.

If you say something, the parent listens, a diagnosis is made, resources made available and all goes well…. the child’s life, parent’s life and even the community itself could benefit.

Conclusion – It Depends

Ultimately, there is no right or wrong answer.

Some situations are more obvious than others, some people seem more receptive than others, some people are better at broaching the subject with others… so the answer has to be… it depends.

Still though, I think the odds are that no.. you shouldn’t. There are more reasons not to than there are reasons to do it.

It’s unfortunate that autism still has such a stigma attached to it that suggesting such a thing would be so offensive.

Perhaps, as society grows and awareness (also understanding and acceptance) of Autism increases, maybe then it would be more acceptable to talk to a stranger about it like that.

I dream of a day when people are aware and unafraid to hear that their child may have Autism. Not that Autism is such a good thing but they know more about it and more about what to do should their child be diagnosed with it.

Right now, it’s still very much unknown among the general population. It’s a mystery. People know there is no cure. People know that it’s very expensive for therapies and treatments. People don’t know what Autism really is or that some people do live a very full and rewarding life with Autism.

With further education, with further understanding and acceptance, perhaps the answer to this question will be far more obvious… and far more positive. And when that happens, everyone will benefit from the kind word of a thoughtful stranger who only wanted to help.

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