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My own little world – Important place to be but don’t get lost there

By on September 8, 2011 in Autism

The phrase “own little world” is often used to indicate ignorance, that a person has no idea what is going on in the world outside of their own life.

I like to think of it more as an indicator as to what is important. You see, what ever is happening in my own little world has the utmost importance to me. It’s what I know best, it’s what I care for most and it’s what is most important to me.

There’s nothing wrong with your own little world, everyone has one and everyone should be proud of theirs.

My own little world

our own little worldFor me, my own little world consists of myself, my wife, my children and my pets… that’s it. That’s what I know better than anyone else, it’s what is more important to me than anything else and it’s what brings me the most joy.

For some people, it might be only their children, only their spouse… it may be just themselves, if they are focusing on their own happiness before starting or without having a family.

You protect your own little world even if it means getting a little bloody because there’s nothing more important in the whole world.. than your own little world.

But…

Don’t forget there is a bigger world out there

I find that, especially when it comes to parenting, and 10 fold more when it comes to Autism, people easily get lost in their own little world.. and when they step out and look around, they forget that things are different out there.

I know I’m not telling you anything that you don’t already know, but we all need reminders sometimes. Hear me out for a minute…

We Autism parents write about our experiences and sometimes, when we’re lucky, we write something that you can relate to.  However, the very nature of Autism, as we all know, is that the experience is different for everyone.

This presents a very interesting problem…  we write about our own little world, which doesn’t match up with other people’s little worlds… there are two possible outcomes:

  1. One or both parties recognizes that their own little world is different, accepts that fact and either does not comment or does comment, stating how their own experience differs
  2. One or both parties denies the existence of the other person’s little world, proclaiming that they are liars, misguided, ignorant or just plain wrong and that they are doing a great disservice to the entire world (which I’m assuming is their reference to their own little world but we both know it isn’t)

More often than not, I see #2 all over other people’s blogs. (pun intended)

Take a deep breath

The problem with this is that it requires both parties to remember and recognize the “my own little world” phenomenon and take a deep breath, relax and accept that we all have different experiences with differing opinions.

Not just both parties, but many many parties… the more popular a blog becomes, the more that little worlds come into contact with it… some of them collide.

Just this morning I tweeted: Autism is like a rainbow; it has a brighter side & a darker side, every shade is important & beautiful and it hides something golden.

To which, one angry parent was rather mad that I’d call it a rainbow (I didn’t, it’s a comparison), proceeded to remind me that Autism is a serious disability and that “fluff” like that doesn’t help those who suffer from Autism.

He didn’t take a deep breath.

He completely skipped the “darker side” reference as well as the part that says that it “hides something golden”. I mean, yes… I’ll admit to the “fluff” but it’s not all peaches and cream either. I felt it rather adequately expressed the darker points… the “suffering.”

Anyway, as I said, he didn’t take a deep breath, instead acting instinctively to attack me for not telling his story… for not telling everyone about his own little world.

However, that’s not my place. I can’t tell other people’s stories for them.

And so…. I take a deep breath, and I remember that his own little world is what he knows and is what is more important to him. In his way, he’s protecting that.

My own little world is different. I can accept that.

And when I read about his experiences and his story… I’ll remember to respect that his own little world is vastly different than my own.

Please keep in mind that, what you experience in your own little world, might not be what someone else experiences. Their story is completely different. They share their story, not to fight with you, but to show you just how different things can be… and maybe, sometimes, just how much the same they can be too.

Take a deep breath. Your own little world is not threatened by others sharing their own story. Your own little world is still your own, you still know it better than anyone… and most of all, it doesn’t mean that anyone thinks you are ignorant of what’s going on outside of your own little world. At least, it shouldn’t.

Just take a deep breath. In fact… you should rejoice that no one else’s little world is the same as yours. If it was, it wouldn’t be your own.

Comments { 6 }

The discrimination you hate but should really learn to appreciate

By on September 7, 2011 in Autism

It’s back to school time which raises a lot of emotions as well as a lot of concerns. Rightfully so.. it’s a rough transition to go through.

As such, the media lights up and bloggers all start to sing in harmony about the troubles, struggles and issues pertaining to “back to school” time.

One such issue that I’ve been hearing a lot about is discrimination… not that some children discriminate against other children but that of the schools or teachers themselves.

The Problem

What we find is that a lot of schools or day care providers are unwilling to even accept children with special needs, or if they do, they do not treat those children fairly. They don’t provide them the leniency they require or the special attention they need.

In some cases, the children aren’t cared for properly nor treated properly either.

Welcomed Discrimination

discriminationIt’s rather painful to accept but honestly, I’d rather that children were not accepted into schools or day cares if those people are not trained, not equipped or otherwise unable to treat those children properly.

When I read about the nine year old that was locked in a room and then hand cuffed by police while at day care, I stop and wonder… could it have turned out very differently? Not better… but differently? Think about this:

If the day care provider had refused to take the child in the first place, would there have been a news story about discrimination against Autism?

Perspective Discrimination

I read all the time about Canada refusing to let in children that have Autism, sometimes the whole family is denied. That is so very wrong. It angers me.

But it’s not that they are turning them away that makes me upset. It’s that Canada recognizes it’s own inability to care for any more children than it already has and is doing nothing about it.

In fact, Canada is unable to care for the number of children it already has… current wait lists are proof enough of that.

But now, when people try to bring their children into the country, they’re turned away because the government deems them a burden on an already failing system.

And it is. It’s failing. It’s not keeping up with demands.

And it knows it. It turns away children because of it.

And it’s doing nothing about it.

The schools are trying, but the funding isn’t there. The police are trying, but the funding isn’t there.

There is discrimination but it’s not by the teachers, or the day care providers, or the schools or the police… it’s by a system that knows that it isn’t doing a good enough job and yet does nothing about it.

Conclusion

So when a child is turned away… don’t get mad at them. They’re doing their best with what they have and they know that if they do take your child, your child won’t receive the service that they need and then that will be what gets into the news.

When that teacher or day care or school fails that child, there will be hell to pay and it won’t be the government that takes it, it’ll be them. Despite there attempts at doing their best and getting themselves in over their heads… they’ll falter because they don’t know any better, or don’t have the resources, or the training or man power… a child will get hurt, or lost or put into hand cuffs…. and they’ll be dragged through the coals for it.

It’s either that…  or discriminate against Autism.

I’ll pass on the hand cuffs… I’ll take the discrimination.

Comments { 10 }

Acceptance is the greatest gift you can give a child with autism

By on September 6, 2011 in Autism

It’s a scary thought, it truly is, but there are parents out there, far too many really, that simply can not accept that their child has Autism.

Either they’re in denial and refuse to believe the doctors, or they refuse to believe that their isn’t a cure to make their child how they want their child to be… or they just refuse to accept that their child is different… I feel so very bad for those children.

If you can’t accept me, who will?

A child’s only wish is to make their parents proud. To receive praise for those first steps, to get a treat for remembering to tidy up, for getting a shiny new bike for doing well in school… but when your parents see you as broken, defective…. less than you should be… what message does that send to a child?

Children grow up to be self confident because their parents instill that strong self worth in them. Children learn to be happy with themselves because their parents believe, through and through, that their child is wonderful exactly how they are.

Whether a parent tries to fake it or not is irrelevant because a child that can not be accepted by their parents will always feel they’re not wonderful, they’re not worthy of acceptance… that no one will ever like them for who they are.

Acceptance is not giving up

The biggest misconception is that accepting your child for who they are is the same thing as giving up and doing nothing to help them. That’s the furthest thing from the truth.

Only when you accept your child’s disorder can you begin to move forward in truly helping your child overcome, excel and maybe even turn that disorder into an advantage.

Many people who refuse to accept that their child has Autism will also refuse to start therapy, treatments and such… losing valuable time, if they ever do come around to accepting it all.

Also, acceptance in finally believing that your child is who they are, how they are and that they are simply always going to be different can help you to adjust your strategies and methods in that you recognize the need to incorporate your child’s wishes, behaviors, activities and “quirks” into the therapies/treatments that you’re trying to use.

Until you stop forcing change on your child and rather, accept the differences and work with your child’s differences, you will keep hitting road block after road block.

Therapy isn’t meant to make it so that your child is no longer autistic, it’s to help your child succeed with Autism, not despite it.

Acceptance leads to self respect, self confidence, self reliance

self acceptanceA child without his or her parent’s acceptance will grow up with self doubt, no self value and will always feel like they don’t belong… like they’re broken.

With acceptance though, a child can grow up to feel that they are respected and have real value to themselves and others. With confidence, children will feel more bold, more brave and more willing to take the steps necessary to becoming independent.

If you look at your child like they’re broken… they may never learn to brush their teeth. But if you love them for who they are (yes, including the fact that they have Autism) and begin to work with your child, with the Autism, you will find a way to have them brushing their teeth and you’ll find that way together, because you’ll work together to do it.

Acceptance is such a powerful thing… it’s far more than just believing the diagnosis… it’s empowering, it’s life skill building, it’s a source of pride, it’s a confidence booster, it’s enlightening….

Acceptance is not giving up. Acceptance is not saying something you don’t really believe.

Acceptance is a place. It’s a moment in time. It’s a destination that will set you on an entirely new path, a beautiful path. It’s the end of negativity and the beginning of limitless possibilities.

Acceptance is the door that you need to open… step through and close behind you.

Move forward with your child, not against your child.

Your child can be perfect. All you have to do is believe it. Because they are.

Comments { 6 }

Dear HP, I have a proposal for you

By on September 2, 2011 in Autism

I have an idea for HP and their TouchPads, but first…

First, a bit of back story

HP-Touchpad-TabletRecently, HP found that their sales of the TouchPad tablet were less than satisfactory and decided to scrap the whole project. Not just the tablets, but their entire computer making efforts… computers, tablets.. the works. To prove their point, they dropped the price of the TouchPad from $399 to just $99 to get them out of the stores.

Not only did they go out of the stores, they left burning trails behind them (you know, because they left so fast). People scrambled like mad to get themselves some discount technology.

As a result of that, plus, some rumours of a need to use up remaining inventory and parts and such… HP announced just a couple weeks later that they’d make some more TouchPads for sale in the last part of this year.

My Proposition

One would assume that HP is going to be selling these for $399, or at the very least, higher than $99. They can’t possibly be intending to run all this manufacturing to churn out tablets that will make less money than it costs to make.

If that’s true, and keep in mind, I have no background in business or marketing or anything but, wouldn’t that be some really bad business thinking? To take a tablet that couldn’t sell, drop the price insanely low so that the people that did want one got it… and then to put more out there right back at the same price that they were before and didn’t sell?

My idea is this… donate them to special needs programs/schools. Or at the very least, sell it to them at a great discount.

Did you know that Apple used to market their computers to schools? They even donated (and still do) old computers that were used or no longer current to schools that could use them.

Not only is it great for public image, not only is it great for the company (donations are always beneficial) but when you think about it, how brilliant is it?

Well, think about all of those students using those machines for several years… when they need something similar at home, what are they going to use? When they graduate and need to use a computer.. what will they want to use?

Granted, that’s not really the focus for HP since WebOS probably won’t be around much longer nor will HP’s computer/tablet devices. But still, the idea is sound.

Special Needs schools, teachers and students need your help

Special needs schools have very little funding… certainly less than colleges. There is simply never enough money to get all of the supplies they need, sometimes they even can’t take as many children as they’d like.

And if there’s anything we’ve learned since the release of the iPad, special needs children can work miracles on a tablet!

They learn quicker, more easily and generally have more fun doing it when they have a device that they can touch and interact with.

I believe the number of apps on the iPad makes it the best choice but not the only choice. Any tablet would work.

If a school was given tablets, they could even hire developers to make what they need… since they could divert some funds from other supplies which would no longer be needed due to the tablets.

Please consider it

You’d be helping the special needs, helping the future and best of all, putting these devices to the best possible use they could ever have.

Don’t put them on a shelf where they’ll sit until you’re forced to drop the price again.

I’m not asking for me, I don’t need one. I’m asking for the community, for many communities… for the future.

Do something really great with this. It’s your moment to really shine.

 

If you work at or are involved with HP, thank you for reading.
If not, can you help me in getting this message to HP? I’d like for them to at least consider it. Thank you! 

Comments { 2 }

Does person first language indicate a lack of acceptance?

By on September 2, 2011 in Autism

I really had thought that I was done with the topic of “person first language”. I really had thought that I had said all that I had to say. But then last night, someone said something to me that brought me right back into it.

I tweeted this “People with Autism are not damaged nor defective. With your understanding, acceptance & guidance, their potential is unlimited.”

This prompted one parent to respond in agreement but also added in this: “my son is not autistic he has autism”

For some reason, this response kept me awake last night.

Do you truly accept your child?

I’ve never been met with person first language in agreement to understanding and acceptance of a child with Autism… somehow, it just really struck me as odd, like it was contradictory in some way.

All I kept thinking was, if you truly understand your child has Autism, if you truly accept that your child has Autism… you’d have no problem with saying that they are autistic.

What is acceptance?

acceptanceAcceptance is a funny thing, because it tends to mean different things to different people, or have different meanings in different situations.

For example, when my son was diagnosed with Autism, it took a little while for me to fully accept that diagnosis. I had to accept that he had a disorder, something that I couldn’t fix.

It wasn’t until much later that I had to accept that he had Autism. While it sounds like I had to accept the same thing twice, it’s very different.

I accepted the diagnosis the first time, but then later I had to accept the fact of life, the fact that his life was going to be different, that I’d have to parent him differently, that there would be very different struggles for me compared to other parents I know and more so, to accept that my child was going to be different.

I had to accept that Autism was a part of who he is. I had to accept.. that he was autistic.

While some people think they have accepted the same thing I have, they may actually be referring to one instance of acceptance while I am referring to another, even though we may both think we’re talking about the same thing.

The funny thing about perception

It occurred to me that when a person pushes “person first language” on others, it’s because they do not fully accept their child. Well, more to the point, they don’t accept the Autism that is within them. To them, the person and the Autism will always be two separate things. That the person can’t be autistic because that would be accepting that Autism is a part of who they are.

So I asked myself why that is… which lead me to think of it another way.

What if that person had natural born artistic ability. Would that parent refer to their child as “a child with art” rather than an artist?
What if that child had a natural born aptitude for math? Would the parent refer to their child as “a child with math skills” or a mathematician?
What if the child had a natural born ability to play music? Would the parent refer to the child as “a child with musical ability” or a musician?

Then it dawned on me… it’s because the parent would accept those skills… those “gifts”. Those are all clearly good things. There is no negative implications what so ever in regards to having those things be a part of who those children are.

But with Autism, there is a negative. There is a down side.

Nonetheless, Autism is still just as much a part of who that child is much like the art, math or music… in fact, I’d argue that Autism is more a part of who they are. Autism affects every aspect of a person’s life since, in reality, it affects all aspects of a person’s input, output and interpretation of the world around them.

But it’s often negative. It’s not often thought of as a gift.

And so, it’s not as easily accepted. It’s not as easily made into an adjective… like musician is.

We don’t see a child and his musical ability as being separate, even though playing music is just an ability.

Meanwhile we do see Autism as being a separate entity, as not being a part of them, because it’s a disorder. While in reality, this makes it more a part of who they are than any one ability does.

What about those with Autism that use person first language?

There are some people with Autism that use person first language because they hate how Autism has affected their life. They hate how difficult it has made things that every other person takes for granted. They hate how Autism has made them feel like an alien on their own planet.

I can understand that, I can sympathize. Still though, I think I could also argue that we have all felt that way at some point. Not to the same degree and not all of our lives, but at some point. Most likely when we were awkward, rebellious teenagers.

Anyway, the point is, while I can understand that feeling and the need to reject the cause of such heartache and struggles, I would also argue that at some point, that person could come to terms with their weaknesses, empower their strengths and move forward if they learn to love who they are, learn to love their unique perspectives and talents and learn to love every bit of themselves… including the Autism.

Many people hate who they are, this is especially true in autistics, but sometimes it only takes the right person, the right moment, the right miracle to cross your path to show you what there is to love about yourself.

I think that if that happens… when that happens… even a person with Autism can come to accept, and love, being autistic.

Does that mean that people shouldn’t use person first language?

Person first language does have it’s place. And of course, I understand a parent’s need to believe that their child is their child… not a label, not a diagnosis.

I also understand that acceptance is far more complicated than simple terminology.

While person first language will never go away, and is not always black and white, and does have it’s place (such as in legal documentation, schools, governments, etc)… I do still believe that it can be a very clear indicator about a person’s level of acceptance of that person.

While not a guarantee, because some parents truly do accept their child through and through, Autism and all… and still prefer to use person first language… I do feel that in most cases, it does show where they are on their path to true acceptance.

I would ask of those parents; if your child, at some point, shows a sudden aptitude for music, and it’s due to their Autism… would you refer to them as a musician? An autistic? or both?

Think about this…  have you ever noticed that no one has any problem with the term “Autistic Savant”?

Have you ever heard anyone insist on “Savant with Autism”?

When it’s a good thing, no one has a problem with it.

Comments { 14 }