Tag Archives | normal

Trading in my sanity

On the day I received my Aspergers diagnosis from the doctor, I was scheduled for appointments with a counselor and a psychiatrist. On the same day that my entire 35+ years finally started to make sense to me, I was put on the list to be fixed.

No one even asked me if I was broken.

The gate keepers for what is normal

It occurred to me that psychiatrists (and psychologists) have become the gate keepers of what society considers to be normal. They write up manuals with definitions of what is not normal and if you fit within those definitions… you’re diagnosed with something.

They’re also the people you talk to over and over again, sometimes for the rest of your life, in the epic quest to figure out how to make yourself normal. And you never will be normal until they tell you that you are.

Which brings me to my son Cameron. He’ll never be normal. He has PDD-NOS (which, next year, will no longer be called that and will simply be “Autism Spectrum Disorder”) and you have that for life. Because it’s one of the many definitions found in the psychiatrists manuals, he will always fit into that definition and thus be told that he’s not normal.

Growing up autistic

My son has a long life ahead of him with some of the most difficult years yet to come, high school.

The truly ironic part of high school is that when he gets bullied (I say when because the odds are, unfortunately, pretty good), he will be sent to a counsellor or a psychiatrist to help him cope with the anxiety, the depression and the feeling of being an outcast.

The bully? He’ll probably be punished in some form, like a detention or suspension but then will go right back to his bullying ways. Why?

Because bullying is normal.

Yeah, I said it. Bullies, while many are doing great work in trying to stop bullying, are still very much a fact of life. Especially in high school. When ours kids go off to high school, they know just as much as we do that there will be bullies there. Our kids just have to get through it.

“It’ll make them stronger.”
“It’ll toughen them up.”
“We did it. They can do it too.”

How has society gotten to the point where the bully is normal and the autistic kid that’s bullied is the one that needs fixing because he’s not normal?

It gets even worse as we get older. For example, here I am, getting my diagnosis and “fix me” appointments all the while other people I know have, what I consider to be, real issues. I won’t go into specifics but there are people I know that could use some help.

But they’re normal. They don’t have a diagnosis for anything. They just have issues. And everyone has issues, to some degree.

So they would never have someone booking appointments for them like I did.

insanityI’ll keep my insanity

Today’s world sees the word “insane” as meaning totally bonkers, crazy or all sorts of not making sense. The truth is, the definition actually is “In a state of mind that prevents normal perception, behavior, or social interaction.

Sound familiar?

Granted, autism is far more than just “a state of mind” but still, you get the same effect. One could argue that something that “prevents” me from being “normal” classifies me as insane.

My son too.

Which makes me think of an old movie I once watched. The movie itself isn’t very memorable to me but one line in it really stuck with me.

Sane and insane could easily switch places. If the insane were to become the majority, you would find ourself locked in a padded cell wondering what happened to the world.

It always intrigued me, even sort of made me smile. Because it’s quite the interesting notion to think that “normal” is really just what the majority of people are doing.

If most people do this, and you do that, you’re not normal. But tomorrow, if most people did that and you started doing this… you were still not normal.

There’ll likely never be more autistic people than non-autistic people in the world but at 1 in 88 being the most recent numbers out of the US, it still makes me think; if more people had autism, would being autistic be considered normal?

That makes me smile.

I’ll go see the counselor and the psychiatrist. My son will likely have to some day as well. And we’ll do our best to be the best that we can be.

But insanity is only a 51% majority away from being considered sanity.

Normal is just a number away.

You can keep it

I love my son how he is. I love my son for who he is.

And now that my life makes more sense, I love who I am too.

Since getting the diagnosis, I feel like I traded in my sanity. I was instantly put onto the “not normal” radar and had appointments made for me.

But I realize now that having autism doesn’t make you abnormal. It just makes you a different kind of normal. A kind of normal that could easily switch places, if the numbers were right.

If normal means changing my son into someone he’s not, you can keep it.

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The subjective relativity with which we define “normal”

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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Our Greatest Wish, Our Greatest Fear

We, like most parents of an Autistic child, have always had but one simple wish for our son… that he could be normal, or at least, have a normal life. We look towards the future and all we see is heartache, sorrow, misery and solitude. Even at the age of 4, we could already see how hard it would be for Cameron to have friends, to socialize, to be normal enough so that he won’t be teased.

We don’t know if he’ll ever live on his own, we don’t know if he’ll ever have a girl friend… much less a wife or family.

There is just so much we fear for him that it literally keeps us up at night talking about it. We are powerless to do anything about it but still we stay awake at night wondering…. what can we do?

However, as I lay awake last night thinking about it yet again, I began to realize that my greatest wish of having him be normal, was also my greatest fear. What if Einstein truly was an Autistic person? What if Tesla was Autistic? How many great minds through out history have changed the world all due to the fact that their brains were simply wired differently than a ‘normal’ persons? And what if someone had made them normal?

I got to thinking about how every parent sees unlimited potential in that new baby the first time they hold it in their hands… that tiny little bundle of new life could change the world, with the proper guidance and support.  Then I got to thinking about how there are some truly amazing Autistic people in the world.

I would like to share some examples of current day brilliant Autistic people:

Temple Grandin.
This woman did not speak until she was four, and hated most of her childhood but eventually went on to finish college with a doctorate and is a successful scientist and public speaker. She has designed more than half of all the slaughter house systems in the US because her methods are more humane and more efficient. And if you doubt me, Time has picked her as one of the 100 most influential people of 2010.

Stephen Wiltshire
Stephen lives in a world of his own, very quiet, very alone. He didn’t say his first words until he was 5 but when he turned 11, he drew a perfect picture of the city of London after having flown over it only one time. Since then, he’s been named the ‘Human Camera’ because he can successfully draw every detail of any city he flies over. Here is some a video of him flying over, and then drawing Rome, right down to the number of windows and columns. You can read more about him here.

You can read up on some more in this article and keep in mind, since Autism is still largely unknown to us, many others through out time could have been Autistic.

Now then, that brings me back to Cameron… if by some miracle, we found a way to make Cameron be ‘normal’, what might he be missing out on later in life. What might he have accomplished that we would be taking away from him.

I think back to the day I held him in my hands for the very first time and a whole world of potential and possibilities flowed through my mind, I thought he could grow up to be amazing! As he got older, he was compared to Einstein because of his delayed speech and I got to thinking… comparing him to Einstein, for better or worse, is really very amazing.

Now all I know is, if there’s greatness there, it can’t be forced or held back… only guided. And if it’s not there, that’s ok too. He’s already been compared to Einstein, that’s way better than I can say for myself.

I can’t wish for him to be normal and for him to be exceptional at the same time. That’s not fair to him, that’s not fair to me. He is who he is, and to me, he’s already very amazing.

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