Tag Archives | family

Visiting family – One year later

By on May 29, 2012 in Autism

We made the decision to move pretty far away from my family before Cameron was old enough to start school, in an effort to get him into a school that would suit his needs rather than force him to conform to the needs of a school around here.

It was a big move as it meant separating my children, and myself, from my family. It’s an 8 hour drive so it’s not so far that we never see them but it’s far enough. Plus with extreme weather conditions where we moved, we basically only get to see my family once a year.

A year isn’t really much to me or my aunts, uncles or my mom… because we’re all adults. But to a child that is only 6, or 4, as is the case with Cameron’s little brother Tyler, a year can make a huge difference.

There’s extra inches, there’s maturity in their face, a wider vocabulary, a better sense of humour and in the case of a child with autism, like Cameron, there’s progress.

Yes, Cameron is taller and smarter now but it’s the fact that he’s willing to actually talk to people that really shocked my family. Not just talk but have real conversations.

That’s thanks to the hard work of his great teachers at the school, his therapist, our own hard work at home and of course, Cameron’s very hard work to be willing to put in the effort to try. If he didn’t want to, and I’m sure a big part of him did, he could have just shy’d away and refused to talk to them. But he didn’t, at least, most of the time anyway.

More so than that was his need to get changed in the bathrooms, not wanting anyone to see him naked. At 6, this probably should have happened earlier but as a child with autism that is not overly fond of wearing clothes as it is… it’s really a very big deal.

It’s very gratifying, as selfish as that is, because it justifies, at least to me, our decision to take our family so far away. And my family sees that and understands our decision. They understand why it is that they now only see us all once a year. I mean, they understood the decision when we made it but now we have results.

And I’m proud too. Not of my decision or of myself but I’m proud of my son. I’m proud of Cameron for making that effort to talk to people and even play with them sometimes. To get off the couch and go outside to play with the other kids a couple of times.

I’m proud of him for making so much great progress so that when we do see my family, he can impress and even amaze them.

Not every parent is able to pick up and move and certainly, not every parent sees these kinds of results from year to year… so I’m so much more grateful than any words I write here could convey.

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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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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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Sleeping with autism

By on March 5, 2012 in Autism

By the title, you’d probably be expecting a post on how some children with autism struggle to sleep through the night or what techniques people use to get more consistent sleeping patterns… actually, this post isn’t about that.

Actually, what I do want to write about is something a bit unexpected, not a huge surprise but certainly wonderful. See, if you were to check in on my boys right now (at night), you’d see that they’re both crammed into one single little bed, asleep together.

Don’t want to sleep alone

My boys have always slept in the dark, in the quiet and on their own. We’ve never used night lights or anything and so they’ve never had any issues with needs or fears. They just go to bed at bed time and that’s that.

However, recently, my little one (Tyler, 4) has been asking that he have someone sleep with him. Usually me but sometimes my wife. It’s not because he’s scared… he just wants us with him.

Now, these are small beds… I don’t fit in one when I’m by myself, much less with a child beside me.

So there has been a couple of times that I’ve laid with him, usually I can’t because I have other things to do and then some other times I just won’t because I don’t want him becoming dependent on that sort of thing happening every night.

Autism and Empathy

Cameron and Tyler

Cameron and Tyler

This is where his big brother, Cameron (6 with autism) comes in.

The other night, I went to check on them and they were both crammed into Tyler’s bed. It wasn’t pretty. Neither one of them stays still for long in their sleep.

The next day, I asked him why he was in Tyler’s bed and he said “I just wanted to make Tyler happy.”

Now, there are strange rumours and beliefs by some people that people with autism, especially children, lack empathy. Meaning that they can’t understand how others feels, don’t identify with them and most absurdly… don’t care. This is obviously not true. I mean, not always… there certainly can be times that they won’t understand or even care, just like anyone, but when you add it all up, it’s not true that autistics are completely incapable of it.

This was certainly a great testament to that… Cameron, wanting to make his little brother happy, got out of bed and climbed in with Tyler so that he could have someone to sleep with.

They don’t do it often, thankfully, but when Tyler is really upset about it, Cameron goes on over and hops into Tyler’s bed. How can I get upset about that?

It’s awesome!

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The common, not so common, issues

By on October 18, 2011 in Autism

One of the problems I often encounter when discussion Autism with someone that does not know much about Autism is overcoming their need to relate.

Which sounds really odd, doesn’t it?

The Problem

Here’s the problem: for every sign of Autism that I explain, the response is often “but a lot of kids do that”.

And when that happens, you kind of have to go…  “yeah… a lot of kids do do that, but not like this and not with the combination of all of the other things my child does.”

Here’s a quick laundry list of Autism symptoms, off the top of my head, where “a lot of kids do that”:

  • meltdowns
  • not listening/ignoring
  • get aggressive
  • get bullied
  • be shy
  • picky eating
  • have trouble sleeping at night
  • speaking delayed
  • miss milestones
  • be repetitive
  • need routine
  • wander off/elope
  • refuse to look you in the eye
  • be brilliant

The list goes on and on… and when your child is having an issue with one of those things and you mention it to someone, often times the response is “yeah but a lot of kids do that.”

Understanding

same but differentThis is why the DSM tends to combine signs, meaning that your child has to have several signs and meet several areas of criteria in order to qualify for an Autism diagnosis.

The truth is, they’re not wrong. A lot of kids do that!

Here’s the thing… most kids go through phases, most kids don’t do these things to the same extent or severity and most kids don’t do many of these things all at the same time… making it a fully quantifiable disability.

And that is what is so maddening when someone responds to me with “but a lot of kids do that”.

It’s a struggle to admit that they’re not wrong and yet they’re so far off base at the same time… how do you explain that without upsetting them? Especially those stubborn family members that are so certain they’ve “been there, done that” and that you’re just young and “finding out what it’s like”.

See, I can see you sneering right now because we all have those family members.

In these cases, it’s best to remember the 3 key points that make your experience different from theirs:

  1. Most kids go through phases. Autism is for life.
  2. Most kids do these things to varying degrees. Autism tends to be all or nothing.. to the extreme.
  3. Most kids do these things one or two at a time. Autism means that several or even all of these signs are present.

If you really want to throw it in their face, you can add a fourth point… that their children were just brats and yours has an actual disability. This often results in a discussion about how much medical experts know and don’t know vs now and then, how they just have to give everything a name these days and so on… so it may be best left out.

Chances are, if you’re like me, it will really bug you every time you hear “but a lot of kids do that” but you have to remember that they mean well. They’re either trying to relate what you’re saying to what they know or they’re just trying to show their support, in their own weird way. That they “understand” what you’re saying because they’ve seen it.

Then you can hand them the gluten free food and/or therapy bills and say “consider yourself lucky that not a lot of kids do that”.

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