Tag Archives | awareness

What the r-word means until it means something to you

By on March 7, 2012 in Special Needs

To those who do not understand what the problem is with the “r-word”:

The r-word…  retard. It’s a funny little slang word that can be used to describe so many things, situations….  people. It’s a word that’s causally thrown around, used without thinking about it…  it doesn’t really mean anything.

Right?

Perhaps, if you do not have anyone in your family that has a disability or special need… it really doesn’t mean much to you. And so you don’t get it. Why do people make such a big deal about it? Why do so many people get so upset about a word that you don’t even give a second thought to?

Well, let’s fast forward a few years, actually, a lot of years and let’s say you’re now approaching your 80’s. You have children, grand children and loved ones beyond that. And then you have a stroke and in an instant… a large portion of your brain function is no longer available to you. You’re still smart, you still remember everything, you still love everyone… but now you struggle to say the things you’re thinking, you struggle to use your hands with precision…. you simply… struggle.

How would it feel if your children started calling you a retard? Your grandchildren? Ok, maybe not directly, but let’s put it this way…

One day you try to pick up a glass of water, it slips and crashes to the floor. A short while later in the day, you grandchild goes to pick up their plate, drops it and it smashes to the floor. Out of frustration, that grandchild says to themself: “Ugh, I’m such a retard sometimes!”

Ouch.

Perhaps that’s too far off, let’s put yourself a little closer to your present self as say… 20 years off from now, where you’re now a working and capable adult and your child has just been born into the world of limitless possibilities and wonder.

And then the doctor informs you that there have been complications. It’s nothing you did, it’s nothing they did… it’s just one of those things, right?

Something strange happens from that point on, where you begin to see your child as a determined fighter, a winner, an against all odds victor over anything that the world can throw at them and you love them so much more for it. It wasn’t one complication… it was a life long complication that has only made you and your child stronger.

Over time, you start to realize that the strange thing that I referred to earlier is actually that your perception is no longer that of your friends….

Where they still see a disability, you see strength.
Where they see failure, you see success.
Where they see retard… you see your child.

One day you try to get your child into a nice school in the neighborhood but they turn you away. They can’t accommodate your child and your child’s needs. Another parent is getting their child into the same school and asks why “that other parent and kid were turned away?”, the administrator tells them that your child has special needs and can’t be accepted. The kid, thinking you can’t hear, says “he wants to bring his disabled kid to this school? That’s retarded.”

Ouch.

The world hasn’t changed, you have. Now, instead of not giving that word a second thought… you do give it a second, third and fourth thought as it hurts you to the core.

It now means more to you than you ever thought it could… more than you ever thought it should.

And you speak up, and those kids don’t get you… they don’t understand why you’re making such a big deal about a word that they’ve never given a second thought and in that instant, you see yourself in those kids. You see what you were missing.

So perhaps it doesn’t matter right now, perhaps it’s just a funny silly little word… but some day it will hurt. It will hurt a lot.

Whether it’s you, your child, grand child, cousin…  friend… it doesn’t matter. One day you’ll hear someone use that word and it will hit close to home and it will bother you. It will bother you a lot.

It’s not a funny silly little word. It’s a stereotype. It’s a label. It’s a knife in the heart. And not to a stranger… to someone close to you, maybe even yourself.

You didn’t even give it a second thought.

Click the image below to learn even more and to get involved… let’s help people to understand what it really means when you use the r-word.

end the r-word

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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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The Autism documentary that will completely and totally shock you

By on January 17, 2012 in Autism

A few days ago, I received an email from a man named David, an autistic from France. He sent me a link to a documentary called “The wall or psychoanalysis put to the test for autism“.

The documentary that you are about to see was not filmed in the 1940’s although you will think it was. This film, out of France, was released in September, 2011 by Sophie Robert.

In just 52 minutes, you will see the culmination of 4 years of investigations among psychiatrists and psychoanalysis practitioners in France. Robert met over 40 professionals in putting this documentary together and yet, now that it is complete, 3 of those professionals are suing Robert in an effort to have the movie banned by the court.

I don’t want to give it all away but you will see Autism described as madness, a result of incest (or incestuous needs), a mother’s failing, a father’s failing and so much more. You will see a family that lived with and against this system.

This is a french film which means that English subtitles had to be added and they can be difficult to read at times. But it is still very much worth it to watch this film.

Awareness is more than just making the world understand Autism… it also means putting the past behind us and making things right. And watching this, while it may be painful or frustrating, it is necessary.

THE WALL, OR PSYCHOANALYSIS PUT TO THE TEST FOR… by runmagali
(If it does not load, hit reload/refresh or click the link above to view)

Now that you have seen the film, please check out http://www.supportthewall.org/ where every effort is being made to stop the abuse of autistics in France.

Starting to get international attention, they are planning on holding a press conference on January 26th in New York City to launch an international petition against the abuse of autistics in France.

Coincidentally, that is also the date that Sophie Robert will receive her court decision… will the movie be banned or not?

Share this movie. The more people that know the truth, the sooner this “psychoanalysis” can be stopped.

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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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Explaining Autism

By on January 6, 2012 in Autism, Autism Awareness, General

I realised something today about autism. I realised that despite spending the best part of a year immersing myself in all things autism, reading every book, blog and website about the subject possible,and despite living with a four-year old autistic boy, I still really struggle to answer the simple question, ‘what is autism?’

I’ve mostly been asked this question by relatives, but variations of it crop up from all sorts of places. I’ve even been asked at work, and I work in a school. I usually begin by telling them it is a disability and a condition that affects the brain. After that, I start to struggle.

It’s not that I don’t understand autism. Since my son’s diagnosis last March I’ve come a long way in learning about it both first hand and through educating myself. My son is four year’s old and in his first year at (mainstream) school. Our story is probably very typical: at around two and a half we grew concerned about speech, communication and general behaviour. The usual struggle for diagnosis, support, and educational provision followed.  In the process I came to learn about educational statements, speech and language therapy, disability living allowance, Specialist early year’s services, Sunderland tests, social stories and countless other things. I’ve read the books and I’ve been there at every step of my autistic child’s development. It’s all well documented in my blog which you can read here.

So my difficultly in explaining autism does not stem from a lack of understanding, ignorance or, I hope, problems in expressing myself. The truth of the matter is this: how can you possibly explain autism to a person in a way that will help them understand? That will truly help them to understand the condition. How can you possibly find the right words that will help them realise what autism is like for your child and for your family?

Asking or expecting someone to understand, to really understand, is unrealistic. That’s why it is so difficult to explain what autism is. I could tell them about the triad of impairments, about the lack of theory of mind and the sensory processing difficulties. I could reel off a whole load of information about the condition. But I doubt it would really tell them anything about my son. A wiser person than me wrote, “If you know one child with autism, you know one child with autism.” The condition is so varied, affects people in such different ways, that finding an adequate, all-encompassing explanation is, I think, impossible. How could a simple explanation ever help someone understand the roller coaster ride that is life with autism (both for the child and their family)? The only way to really understand autism, and the effects it has, is by living with autism.

It is the families who live with autism themselves who know what life is really like. I am lucky in that I have a great deal of support from my family and those around me. But they don’t understand. Sympathy is not the same as empathy. For us, the best support has come from reaching out to those in a similar situation, whether it be through support groups, social networking, or blogs. That is why blogs such as this one by Stuart Duncan are so important, and it’s why I blog too.

I’d like to thank Stuart and the other contributors to this blog. By writing about the condition from the ‘inside’, you are reaching out to those in a similar situation. I expect that many people out there have no one who they can really explain autism to. This blog helps them realise they are not alone.

B’s Dad

Life With an Autistic Son

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