Tag Archives | differences

The subjective relativity with which we define “normal”

By on April 17, 2012 in Autism

Normal… that peculiar notion of fitting in with those around us. Not with society… but with those around us. In highschool, some people felt it was normal to be with the cool kids, others with the nerds and so on. At work, for me, the designers tend to fit in with other designers more so than programmers and programmers tend to fit in with other programmers better than designers.

For parents, we want our children to be normal in the sense that they feel comfortable fitting in with other children that are good influences. If they tend to fall in with “the wrong crowd”…. then perhaps normal to them is something that we (the parents) won’t be too comfortable with.

For those of us with special needs children, we think of normal in an entirely different context.

Normal is much more abstract than all of that.

Normal is a conflicting array of all that we could ever wish for and the last thing we’d ever want.

not normalWhen our child is born

A funny thing happens when we have a child. I like to call it “their life flashing before your eyes.” They’re born, you flash a glimpse of their entire life… in contrast to when you are dying and you flash a glimpse of your own entire life.

Essentially, we see a fresh new start with limitless possibilities and all of the ways our child’s life can be so much better than our own was.

With that comes a very strong desire for our child to be anything but normal.

We see them standing against the crowd, standing up to bullies, being able to think differently and creatively… all of the wonderful qualities that makes an innovator, trail blazer and leader.

The last thing we want for our child is to be… mediocre… average… normal.

Growing up normal

The whole problem with the dream of bringing a child into the world that will be anything but normal is that we teach them from day one to be exactly that… normal.

Do as your told, eat all your food, say please & thank you, respect your elders and on and on and on… they’re all good things for people to know and do. But without really putting much thought into it, you are setting your child on the path to being normal.

We send our child to day care, school, play dates, the park… all in an effort to make friends like everyone else. To go to birthday parties like everyone else. To just fit in.

Oh, we still want for them to be great… to be smarter than the other kids, to get straight A’s in school and to be the cool kid that others want to hang out with.

But we sort of want them to do it the ‘normal’ way.

Then comes the diagnosis

Chances are, if your child has autism, you knew before the diagnosis that something wasn’t… dare I say it… normal.

But receiving the official word from the doctor is usually the moment that it truly sinks in for us and our notion of just what was and wasn’t normal is completely changed.

It’s pretty much at that point where all of the optimistic dreams of limitless possibilities leave us and we look at our child wishing for exactly the one thing that we didn’t want for them… to be normal.

The talking comes later, if at all, the toilet training comes later, if at all, the friend making comes later, if at all… and each step of the way, you’re thinking “not normal”, “not normal”, “not normal.”

But then…

Hopefully, if we learn how to help our child, where to get help, what works best and what doesn’t and we figure out what our child is truly capable of… we start to realize that all of this time, through all of these dreams and doubts… we got exactly what we wanted.

Our child is not normal.

We wanted it from the start, we dreamt of it and we wished for it… we just didn’t picture it this way.

But that shouldn’t get us down. Our child is beautiful and wonderful and amazing!

We find ourselves taking great appreciation in the nuances of speech, our senses, the patterns around us, the finer details, the strengths and weaknesses in others and ourselves, the world around us and in the power of unconditional love.

Our children continue to grow and show us just how much we’ve been missing in our lives. Just how much we were completely unaware of all around us.

We missed it… because we’re normal.

Our children are not.

Thank goodness.

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My two boys and their thoughts on autism

By on April 7, 2012 in Autism

Cameron, 6 with autism and his little brother Tyler, 4 without autism, both know that Cameron is autistic. They both know that he can do some things better than Tyler and that Tyler can do some things better than Cameron.

They both know that Cameron doesn’t react well to gluten.

Aside from that though, they don’t see what the big deal is.

They’re kids. They play with their toys, they watch cartoons, they love McDonald’s PlayPlace… and they have their separate loves too. Cameron loves video games and books/stories while Tyler likes arts and crafts.

But really, autism isn’t what separates them nor is it what brings them together. To them, it’s just autism.

And really, isn’t that how it should be?

I asked both of them to tell the world what they think about autism… Cameron answered first, then Tyler, being the adorable little brother he is, basically mimicked his older brother but with his own little spin on it.

Cameron:

Tyler:

Sure they’re little and have a lot to learn but for the most part, I think they have it right.

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A bit of fatherly advice

By on March 20, 2012 in Parenting

father-childEvery parent’s wish is for their children to have a better life than they did… whether rich, poor, big family or small… we only want our children to get the most out of life, and to do so better than we did before them.

Not everyone has the same advice on how to do that and sometimes we down right disagree with others, that’s fine.

So today, I am writing this for my two boys, Cameron and Tyler:

1. Risks

Through out my life, I’ve had a lot of my ideas pushed aside by family and friends that told me that they’d be too risky to try. Take the safe job, make the safe choice, don’t speak up for yourself or you might lose something…  avoid risk!!

If I could go back, I’d tell myself not to listen to any of them.

Sure, some of those ideas were really bad ideas. Maybe some would have failed. Maybe even all of them.

Maybe some would have succeeded too though.

Either way, it doesn’t matter… because right now, I wouldn’t be regretting having not tried. To at least try means that today, right now, I’d have gained the experience that comes with trying. I’d be one step closer to knowing what things didn’t work which would mean that I’d be one step closer to knowing what will work.

Maybe I’d have really really liked one of those things. Sometimes you never know you love something until you try it. Perhaps I’d have loved one of those things so much that the risk would have been worth doing it… and worth doing it again and again.

2. See things through

For all the things I didn’t try, there were still things that I did try… things that required less risk, or no risk at all. The problem with those things was that I’d never see them through.

I’d start something and lose interest, get distracted by life or simply be unable to finish due to my own short comings. What does that mean? It means I didn’t push myself hard enough to know how or to be able to finish what I started.

It is far worse to never finish than it is to fail and end with valuable experience.

3. Embrace the critics, ignore the haters

There is a very big difference between a critic and a hater.

Haters will do their best to tempt you into an argument or to spark your anger. Their jabs have no substance except to incite emotion.

A critic, on the other hand, may be harsh at times, but will offer real observations and sometimes even advice for moving beyond what is revealed in those observations. A critic doesn’t care if you take their criticism or not; or if you get mad or not. They do not speak to anger. They speak to offer criticism. Listen to them. Learn from them.

Critics are the voice of your failures and failures are the experience you take with you when you do something better next time.

4. No one was ever able to stand out by blending in

If there is one thing that school pounds into you, it’s to blend in. Do what everyone else is doing and they might accept you, be different and they will likely laugh or even bully you.

I’m going to tell you a secret that you might not believe until later… school doesn’t matter. The kids at school don’t matter. What you learn at school doesn’t matter. Trying to fit in with all of that will only result in one thing… you won’t matter either.

Be different. Be proud. Stand up and stand out and do it so well that people take notice.

When you think about all of the greatest people in the world, think about what they do to be the greatest. Do they try to do what everyone else is doing or do they try to be different?

Don’t worry about better or worse. Because you will be worse. But you will also be better. That isn’t what it’s important. It’s not always the best that stand out. It’s not always the best that are remembered.

Just be who you are and don’t ever let anyone tell you that you need to blend in. You do not need to blend in. Not in school. Not ever.

5. Don’t let fear stop you

Dads aren’t supposed to be afraid of anything, but we are. We’re afraid of a lot of things. Sometimes the same things that you’re afraid of. The only difference is that it doesn’t let it stop us, or at least, it shouldn’t. But even dads are human.

I’ve let my fear stop me a lot of times. Remember #1? Risks? That’s what I’m talking about. When a risk seems too big, like I might lose a lot… I let my fear get the better of me and I didn’t even try.

There’s nothing wrong with being afraid of the risk. There’s nothing wrong in being afraid of anything. But don’t ever let that fear be what stops you.

Let me put it another way, maybe you’re thinking of doing something really big but the risk in doing it isn’t worth the reward. That’s fine. Don’t do it. You’re smart. That’s entirely different than not doing something because you’re afraid.

There were some things that I was smart to walk away from. Then there were also things I walked away from simply because I was afraid… that’s not smart.

6. Go for what you want

Figure out what you want. Figure out how to get it. And do it. No matter who says not to. No matter what the risks are. No matter how afraid you are. No matter who might be looking and thinking you’re strange for wanting it.

Do it. Do it for me. Do it for yourself.

You’re already a better person than I am. You have a much better life waiting for you than what I had. You just have to step up and do it.

From Dad

I am writing this for both of my sons, Cameron and Tyler.  It doesn’t matter that one has autism and one does not. This advice applies equally.

No two lives are the same, no two journeys are the same. That’s how it is supposed to be, with or without autism.

Do these things that I could not and you will be happy, I will be happy too.

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Different Kinds of Special [Review]

By on January 23, 2012 in Autism

I received the book “Different Kinds of Special” this week, written by author and poet Donna Carol Koffman. She is the grandmother of a little boy named Reese that has autism and it is for him that she writes this… or at least, he was the inspiration.

As the description says: “In this book, Donna gives Reese a voice to teach young children empathic understanding, acceptance and inclusion.”

Also, an interesting bit of trivia for those of you that have or get this book… the illustrations are done by Breanne Biggar but, one page, where the children are drawing on a sidewalk, you will see the wonderful art work of a young man named Devin, who has Aspergers. He was 6 when he made those drawings and you can read a bit about him at the back of the book.

different kinds of specialThe Book

The book is about a bunch of children all going to the park to play… but none of the children are the same as each other. This book explains very simply yet very clearly just how different each person can be from each other. Starting with the obvious, such as hair colour, height, weight and so forth, the book eventually gets into more distinct differences such as how some people are unable to walk (wheelchair) or communicate (talk)

The Story

While there really isn’t much of a story, it does take you along on a bit of a journey through the park. It’s kind of like people watching, but for children. As you go through it, you really feel like a child standing there while your mom or dad talks to you about what you see. And that’s how I felt, and I’m a dad. To invoke that kind of feeling in a reader means that the message is being delivered very well.

My Review

I read the book by myself while my wife read the book with my son Cameron. So I’ll give you an idea of what we both think.

For me, I found it quite intriguing that autism is never actually mentioned. It’s also quite brilliant, in that it’s just another one way that everyone is different. So rather than single out any specific disorder or ailment, you’re left to fill in the blanks as you read about those that can not speak, see, hear, walk and so on. These children on the pages all have different strengths, weakness, colours, sizes…  and they all have smiles.

I can picture my son in those illustrations just as I can picture other children that I’ve met through my life or that I know right now. They can all fit into these pages.

More so than that, I can see myself in many of the pages. As you read about how some children are shy, some aren’t, some don’t like to do some things, other do…  and some children cry because of how hard it is to make other people understand them… you get it. Both as having memories of that but also in understanding where her grandson as well as our own children are coming from.

My wife said:

The book gave a good sense of accepting those who have differences and allowed Cameron the opportunity to look passed himself and see others and accept and want to help them. We were able to talk about the book and explore ways to make people in our lives feel more welcome and loved even though they have differences. 

Together, we both felt the only criticism we could make is that it’s a bit of a dry read, in that there is no story and comparing differences makes for a bit of repetition. Our four year old lost interest half way through. Cameron, however, did not.

But it was never meant to be a story and no one will ever fault a four year old for not grasping the differences of all people. So while it may not make the best bedtime book ever, it does make for a wonderful story time book that really helps to reinforce acceptance within us all.

If more people read this book to their children, there would be far less bullying in the world.

You can buy Different Kinds of Special from Amazon.com for just $19.95 in paperback and read more about the book at http://lostforwordspress.com/

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Misrepresentation within the Autism Community

By on January 14, 2012 in Autism, General

This is a very exciting time in the world of Autism… more and more, autistics are finding ways to have their voice heard, or give voices to those that have had no voice before. With the improvements in text to speech technology, the rapid increase in iPad apps and just general understanding in general… it’s amazing what people can do when they know what to look for.

However, this has also lead to some very heated emotions. People are getting very frustrated with each other.

Misrepresentation

John Elder Robison wrote : As the autism spectrum expands to encompass more people with progressively greater verbal and written communication skills, those individuals have begun speaking for themselves.  By doing so, they are altering the public’s perception of what or who an autistic person is or may become.
From:  http://jerobison.blogspot.com/2012/01/looking-forward-at-autism-spectrum.html

What he is saying is that Autism used to define a disability that left people speechless, unable to live an independent life of their own… but now, as it continues to expand, it grows to include people that are able to live independently. And that those people are advocating for Autism and giving people the wrong impression of what Autism truly looks like (intentionally or not).

Then there are those who are frustrated with people insinuating that only the verbal, independent living autistics are able to speak up… that all this time, those non-verbal autistics living with their parents or in a home were unable to advocate for themselves but would have if they could have.

Or that maybe those people that you are reading or hearing from actually are not verbal at all or living independently… even though you may have thought they were just because they are speaking out.

There are several autistics that are unable to speak or live independently and they are blogging, writing books, attending conventions and many other things, to speak on behalf of themself as well as others on the spectrum.

A great post on this: http://autistichoya.blogspot.com/2012/01/tired.html

Further still, there are those out there, parents and some professionals mostly, who maintain that while it is great that there are some who can live on their own and others who can perform these self advocacy tasks despite their verbal limitations…. that Autism is still very much a life destroying disability that renders a person a much lesser person than what they would have been otherwise.

These people feel that those attending the conventions, writing the books and otherwise “speaking up” are misrepresenting those that can not do those things. They feel they are giving people the wrong impression since there are so many that hurt themselves or others, that will never learn to read or write or speak and most certainly will never have a voice to self advocate with.

Is it really misrepresentation?

So who is right when there are so many conflicting thoughts? Who is right when people are so mad at each other that they actually get upset at the things they say?

This is simply my opinion, I wouldn’t say that you have to see things my way if you don’t want to… but I’d label all three parties as being right.

It’s not really misrepresentation when all three people are representing their particular view of the spectrum appropriately.

It is a spectrum after all and as such, there really are people who can live independently and speak perfectly fine, as well as those that can’t live independently but are still able to voice their experiences and opinions in alternate ways and then there actually are those who will never be able to do any of those things.

None of them are wrong…. except maybe in their effort to shut each other out or to try to convince others that their own view point is the only viable one that others must share.

disagreementThe true misrepresentation

So if none of the referenced parties are misrepresenting the Autism spectrum and/or autistics… then they all are. Their efforts to make people think that all autistics either have a voice or don’t… their efforts to make people think that all autistics have a voice… and their efforts to make people think that all autistics lack a voice or unable to speak for each other.

Autistics have the most important voice in the Autism community, some may feel that is debatable, but it is certainly how I feel. I mean, who knows about a topic better than the people who live it?

I think it’s everyone’s goal (at least I hope it is) that every person with Autism can be a self advocate… that every child/person will be able to speak up, should they choose to, in what ever way they choose to, to advocate for themselves.

I applaud those that speak up. It’s not an easy thing to do no matter who you are.

My only suggestion, take it or leave it, is to speak together… not against each other.

Don’t dismiss a self advocate because you feel their experiences and opinions don’t represent your child or your view…. one day that may actually be your child that someone else is dismissing and that will hurt you even more.

Don’t dismiss the person living with Autism in their lives who feels their situation doesn’t mesh with yours. Chances are, it really doesn’t. Maybe their child is just fine while you advocate for ideals that don’t match up, or maybe their child never will find a voice in any manner or form and your voice only reminds them of that fact.

It is no one’s intention to hurt each other or to misrepresent each other… it is everyone’s intention to educate and inform the people that have no idea either which way.

Yes, there are some advocates that are simply wrong in the things they say. They spread misinformation and speak contrary to facts. But there are times when two parties can be right at the same time and yet wrong at the same time for trying to make people think that the other party is wrong when what they need to do is speak together.

We must educate each other, since we’re all obviously missing some essential pieces of the pie. We have to work together for that to happen. Not against each other. Only then will any of us truly qualify to try to educate everyone else.

I would love to hear from you. Can we all work together? Will it ever happen?

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