Archive | May, 2012

Labels – Try as we might, we can’t avoid them

By on May 14, 2012 in Autism

I know some people that purposely don’t seek out an autism diagnosis (or any medical diagnosis) for fear of the label that it will attach to themself or their child… a label that they will have to carry for life.

While I could go into quite the long winded argument about all of the ways that a diagnosis would help far more than it could ever hinder… instead, I’d like to focus on the label itself.

The Unavoidable

Anyone that has ever attended high school knows that you simply can not avoid getting some type of label in life. It doesn’t matter who you are or what you do. Even the popular jocks get labels. See? They’re jocks!

They say that if you’re bisexual, you’re confused. If you’re gay, it’s a sin. If you’re fat, you look disgusting. If you’re dressed up, you’re conceited. If you dress for comfort, you’re a slob. If you speak you’re mind, you’re egotistical. If you don’t say anything, you’re rude. If you are nice to strangers, then you’re fake. If you cry, you’re a drama queen. If a female has male friends, she’s a whore. If a male has female friends, he’s a player. If you’re smart, you’re a nerd.

I could go on and on but essentially, the idea is, it doesn’t matter how big, small, tall, short, popular, unpopular, loud, quiet or anything else that you could possibly be… you’re going to get labelled.

It’s just how it goes.

label jars not peopleJudging a package by it’s label

The problem, I think, isn’t so much the label that we are given so much as the assumptions that are made based on that label.

For example.. if you see a woman with a lot of make up, physically fit, very tight and revealing clothing… many people would say “she’s a slut” and with one little word/thought, they assume they know her entire life story.

It becomes an even bigger problem when the label precedes you.  For example, going back to the high school reference, word travels fast so if you are really smart… people may start calling you a nerd, geek, poindexter… what ever they think will hurt most.. before they’ve even met you.

They can’t possibly know if you’re smart just by seeing you enter a room or walk down the hall but because friends talk to friends… people have already placed a label on you and prepared an entire method of dealing with you before having actually seen you.

This is a very shallow way of living, it’s not fair and it’s very close minded… but we all do it. At least to some extent. When we hear about another parent who behaves one way or another, talks a certain way, believes a certain thing… we’ve already made assumptions and possibly even decided if we’ll like them or not before we ever say hello.

Nicknames are just labels that we approve of

Sometimes, when we get a label based on the way we actually are… as given to us by friends… we don’t mind them. Sometimes they even evolve into nicknames that we live with for many years.

They’re still labels.

But they’re not so bad because they’re not based on assumption, they’re based on our actual personalities or quirks. Sometimes we still don’t like them but sometimes we don’t mind.

Special needs labels

Labels associated with special needs are very rarely welcome ones because they are almost always based on assumptions, misinformation and stereotypes.

When someone uses the r-word in association with autism, I take that very personally because neither myself nor my son fit that definition. No autistics do unless they also have a separate diagnosis for exactly that.

See, if you were to call my son very particular or picky… I’d probably chuckle and agree with you.

It’s still a label.

But it’s one based on getting to know him and what he’s like.

Not all autistics are all that picky. Take me for example. I’m very go with the flow, not caring too much what others want to do as I can do it too, I eat just about anything… my son is the total opposite.

Labels don’t always hurt. Sometimes they are born of familiarity and if welcome by the individual… are acceptable.

One on one, when accepted, labels are ok.

Never any other time.

When made by a group, against a group, based on assumption, rumour or “information”… labels are not ok.

I leave you with this… from the man who played the ninth doctor in Dr. Who.

Doctor Who

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This one is for the moms

By on May 12, 2012 in Parenting

to the momsHere’s to the moms…  with your messy houses, dishes in the sink, clothes on the floor, toys everywhere, late nights and early mornings… you deserve far more than a day and far more than a thank you.

Here’s to the moms… you don’t need to be called “warrior moms” any more than a lion would need to be called a “lion cat”, you have stood up to school boards, governments, insurance companies, bullies, nosy neighbors, stereotypes, judgments, assumptions and everything else that the world could throw at you and while not every battle is a victory, there has never been defeat.

Here’s to the moms… you sacrifice, sometimes literally, everything for your child, you think that lack of sleep or social life is a minor frustration in the grand scheme of things, you will go without food before your child ever does, you would literally take a bullet for your child if necessary.

Here’s to the moms… your child is perfect no matter how anyone else in the world may see them, gifted or not, special needs or not. Your child is as important to you as any other child is to their mother. Your child is your world, your child is beautiful.

Here’s to the moms… your day does not belong to a 9 to 5 schedule, you don’t get 2 weeks of vacation each year, you don’t have a cushy retirement to look forward to for your work, you know that being a parent, God willing, is for life… and you wouldn’t have it any other way.

Here’s to the moms… you don’t need to be praised but you also don’t need to be advised… you don’t need to be accepted but you don’t need to be judged… you don’t need people out of your life but you don’t need people in your business, you don’t “need” anything but you welcome a kind hand when offered.

Here’s to the moms… you know that being a mom is more than just being a “biological mother”, it’s far more than just giving birth.

Here’s to you… a human being, doing your best with what you have. Living life as both a guardian and a friend, a teacher and a student. Not doing what you do because you have to but because it is what you do.

You’re a mom. It’s who you are.

Here’s to you. For being you.

Happy Mother’s Day.

 

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Understanding and acceptance means listening, even if you disagree

By on May 7, 2012 in Autism, General

Understanding
Adjective: Sympathetically aware of other people’s feelings; tolerant and forgiving: “people expect us to be understanding”.

I started the Facebook fan page called “Autism Understanding and Acceptance” a while ago with the goal of moving beyond awareness. What this means is that, rather than just simply knowing that autism exists, we must begin to do one simple, but very difficult thing… listen.

We must listen to autistics, parents of autistics, “experts” and even those that we might not want to listen to… the bullies, the disbelievers, the critics… the haters.

And this is quite contrary to what we’ve always been told and have always believed. We’re supposed to ignore the haters. Ignore the ones who’s only goal is to make you angry.

I hope to explain why, at least in my opinion, it’s important to listen.

understandingThe misconception of what it is to understand

First of all, there seems to be this big misconception among some people that tend to believe that “understanding” is something that applies to others who believe the same thing that they do.

The thing that makes “understanding” so difficult is that it requires us to be willing to listen and understand the position of someone that we do not agree with.

We don’t have to agree with them, just listen. Perhaps, through civility, there can emerge a mutual understanding of how each person has come to believe what they believe… even if, in the end, they still do not agree with each other.

For example, this whole post… I am trying to explain how I’ve come to believe that it’s important to listen to the critics and haters while you (the reader) may think that they should be ignored. When you finish reading this post, you may still not agree with me. But you may understand why I think the way I think.

In fact, I could argue that, to be truly understanding, one should seek out people that they disagree with, if only to listen to them.

It is not your job to change their mind. Nor is it really your job to listen. But it is best to recognize that they are two entirely different things. You can listen without having to convince them how wrong they are.

Understanding isn’t something that happens when two people agree. It’s the ability to comprehend why a person feels the way they do.

The uncomfortable position it puts you in

I won’t lie to you, you’ll get stuck in the middle of some sticky situations… and I’d like to give you my fan page as an example, particularly how it relates to the autism community.

When it pertains to autism, “understanding and acceptance” is often considered to be the opposite of “cure”…  there are those who want to cure themselves or their children of autism and then there are those who want for society to have more understanding and acceptance of themselves or their children.

This is such a small part of what it truly is to be understanding. It’s so much more than that.

It’s about understanding why a person might want a cure. What they’ve been through.

It’s about understanding why some people dislike autism, or any disorder or disease or their hair colour or how tall they are or their dripping kitchen faucet. Anything and everything.

It’s about remembering… people are allowed to dislike something every bit as much as they are allowed to like it.

“Understanding” is not a thing that is to be thrust on someone that dislikes something until they learn to like it.

This means that, on my Facebook page, when I post something by someone who feels sad, angry, betrayed…. just… dark… it is I that comes under attack for it. Not the person that wrote it.

It also means that when I post something triumphant, positive, happy…  it is I that comes under attack for it. Not the person that wrote it.

Why? Because people have perceived notions of what “understanding” is and feel that I should share those notions. That by being “understanding” of their feelings… I should also have those same feelings… and only share things on the page which coincide with those feelings.

It puts me in the middle. And unless I share items with people that they are personally comfortable with, they will see me as not being understanding….  for they would not have shared it… because they do not understand it.

But no one single feeling will pertain to everyone. Which means there will always be someone that does not “understand” it.

I can’t win.

Acceptance for the win

Perhaps I can win though… not in a victory, holding up the trophy sense of the word… but by persevering.

You see, understanding and acceptance is not the opposite of wanting a cure for autism.

It’s listening. That’s all.

To those that we do not agree with and those that we do. To those who want a cure and those that don’t. To those that are full of hate as well as those that are full of love. Even to those that will never understand and accept us.

They are people, with valid opinions, feelings… lives.

And it’s true, they might be wrong. We tell ourselves there’s no reason to listen to someone that is wrong.

But how can we ever show them what is right if we can not take the time to understand why they are wrong or how they came to be wrong?

How can we ever hope for them to listen to us if we can not take the time to listen to them?

Besides, right and wrong is such an abstract concept much of the time anyway. Differences, sometimes, are simply that. Differences. No right or wrong.

Understanding the “how” and “why” is the only way to understand the “who”… it’s the only way to move forward towards acceptance.

If acceptance is all you ask of others, then you have to be willing to do the same. Of all others. Not just those you feel comfortable with. Not just those that share your feelings.

Take the time to understand those that you disagree with completely… before you ask someone else to do the same.

Autism Understanding and Acceptance

Autism is not a superpower. Autism is not a curse.

It’s a spectrum of different stories ranging from one end to the other and only those who take the time to listen will be able to truly understand it.

It’s people. Autistic or not. Happy or not. Angry or not. They’re all people.

And they might not understand us. They might not agree with us. They might not accept us.

That doesn’t mean that we can’t take the time to understand them. All we have to do is listen.

That’s what understanding and acceptance is.

Perhaps you disagree. And that’s ok. At least now you understand what it is to me.

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When the care givers are the ones bullying our children

By on May 4, 2012 in Autism

I would like to start this post stating that there’s a growing trend but it’s much likely that this is a much longer lasting trend than most of us think it is… it’s just that we’re becoming increasingly aware of it. Thanks to better recording devices and such, people are getting caught. And thank God for that.

What I’m talking about is when we trust other people to care for our children… to make them feel safe, secure and comfortable…. and those people betray that trust and become the bullies that we were hoping our children would be protected from.

Bullying and Autism

To anyone with autism or that has a child with autism, it’s never been a secret that autistics get bullied more than most other children. Recently, some researchers crunched some numbers and confirmed what we’ve always known.

The shocking part is when we discover that it’s not just the other children doing the bullying.

Grown ups… adults… trained people that are being paid… paid with your tax dollars… adults that supposedly became the person they are today because they loved working with children…. adults… the ones that look you in the eye and tell you that they will take great care of your child…

They’re not adults… they’re monsters.

bully teacherUnder the bed or in the closet, not at school

Children are supposed to be afraid to look where they think monsters might be. They’re not supposed to be afraid to go to where they know a monster actually is.

You see, children don’t see other children bullies as monsters… they see them as meanies or bullies. They’re just kids. They’re just mean. And it hurts and it really sucks. No one likes to be victimized by their peers.

But it’s a whole other level of victimization when it comes from a person of authority… a grown up that is supposed to be keeping them safe. They’re not just mean, they’re not just a bully. They’re the real monsters.

Most kids move on from school and put the bullying behind them. It still hurts to remember but it’s behind them.

But it’s so very much harder to do that when it’s the teachers that did it. That kind of thing scars you for life. You never let that go.

The worst part is… these adults know that. They’re in that position, so they know. They took the courses, they’ve dealt with children long enough… they’re not unaware of the effect they’re having. They’re not oblivious to how smart kids really are, just how much they take in.

People that create bold face lies to parents, that verbally or physically assault a child… they are criminals.

That’s not even the worst part

What really gets me sick is how much the education system is quickly becoming just like the political or religious systems. When these things happen, neither the police nor the media, and certainly not the parents, can get any information out of the school. It becomes an “internal matter” and they just quietly go about their business, giving no information to anyone.

Later you find out that the person that abused the child was simply reassigned, or given leave with pay or… if they are fired.. they’re fired with a nice severance and likely rehired elsewhere to care (or not as the case may be) for other children.

But wait, I’m getting ahead of myself… there’s a reason that much of this goes unchecked in the first place.

See, children are very unlikely to ever say anything. I mean, think about it… you’re a little one at school, who believes completely that the grown up that is in charge is actually allowed to do everything they do… and worse, if you do say anything… they could do much worse than they already have.

How do you speak up to that?

It gets even worse if your child has autism because then there’s next to zero chance that they will tell anyone.

See, in the mind of some people, that makes it “the perfect crime”… they can do and say anything they want because they’ll never get caught.

They also don’t much care what effect it will have, if any, on the child for the rest of their lives. Because they are likely not thinking about anyone but themselves.. they certainly aren’t thinking of the child’s future.

But they know. They know full well what effect it will have. They’re just not thinking about it.

This is what makes them a monster. This is what makes this truly despicable. This is what makes them less than human.

And they’ll do it again… where ever they get reassigned to or rehired with… because it’s an internal matter that the school will handle. Right?

Disgusting is what it is.

Now that you’ve read all of this, I’d like to show you the latest two cases in the news… which are what prompted this post…

First is Stuart Chaifetz’s video where he reveals what he had recorded one day when he was forced to put a recording device on his child. His child was acting quite contrary to his personality and he was getting no answers, so he did what he had to do to find out the truth.

Second is another story is taken from video cameras on board a school bus where aides were supposed to be helping a child put on his safety harness but instead, began smacking him on the head.

http://www.carolinalive.com/news/story.aspx?id=748629#.T6B_EfXUkjs

I am quite happy to report that on this latest story, the aides have been let go, without pay and will be on trial to answer for these crimes.

So what do we do?

Well, many parents refuse to take the risk and choose to home school their children…  and I can’t blame them. If it did happen to their children, they’d likely never know, or at least not for a long time… too long. There really is no way to be sure before hand. It could happen to anyone anywhere and finding out after the fact means the damage has already been done.

Still though, much like plane crashes… even though they do happen, when you take into account how many planes are travelling at any given time… the crashes happen so rarely that airplane travel is still the safest way to travel.

The same can be said for child care, teachers and teachers aides… yes, this disgusting behavior is happening out there… and we’re finding out about it more and more… but it’s still rare.

Still though, even if it’s only happening with 1 in 5,000,000 teachers/aides/care providers…. is it worth that risk?

Is better screening the answer? Well, I don’t know since I’d wager that these people probably really were happy to work with children in the beginning. Years can change a person. So maybe they’d be the best of candidates one year… while not the best choice the next.

Better monitoring systems? That’s probably what I would suggest most but doing so is very costly and takes away from the money available to be doing the actual learning and caring for the children. Still though, it does seem to be becoming more and more of a necessity.

Is home schooling the answer? Well, home schooling does have it’s pros and cons, but if you’re keeping your child home because of the risk of a bad teacher… where does it end? Keep them off the sidewalks for the risk of bad drives? Keep them out of planes for fear of crashes or terrorists? Keep them out of corner stores and banks for fear of robberies?

Sheltering is an option so long as it’s not taken too far, I guess.

I don’t know what the answer is.

All I do know is that by law of averages, the more teachers/aides/care givers there are… the more likely there is to be a bad egg in the bunch. And those laws of averages get heavily swayed when a lack of funding is involved in the equation.

The average is again greatly swayed when there are more and more children that need those teachers/aides/care givers.

The numbers keep going up, the demand keeps going up, the quality…. well, there’s only so many great teachers out there.

Think of it this way… if you can have 20 teachers in the country, you’ll pick the 20 best.

But if you have to have 10,000,000 teachers…. then you’ll have to pick the 10,000,000 best. And the 9,999,999th best teacher is… well, not the best.

So what do we do? Population control isout of the question, not to mention a bit late if it ever was…

I just don’t know. How do we stop this from happening? How to we keep our children safe from the people that are supposed to be keeping our children safe?

The only thing I know for sure is that there needs to be more accountability. Like those aides on the bus facing trial and not getting paid right now… we need more of that.

No more sheltering or handling things internally or shuffling the deck…. people need to be held accountable. A criminal is a criminal whether they are a politician, religious leader or a part of the education system.

Enough of this.

No more “system” except the justice system.

It’s the only one that matters.

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