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Wow, Maybe I Don’t Really Have It So Bad After All

By on June 22, 2010 in Autism

I find this quite difficult to write, partially because it’s fresh in my mind and partially because I don’t want to even pretend to downplay the difficulty and frustration in dealing with Autism. It’s such a difficult disorder to have and to have close to you that I literally can’t find the words to explain it as well as I would like for you to understand it.

The thing is that today I had to spend half a day at Sick Kids Hospital where my son, Cameron, had to undergo some allergy testing, specifically for penicillin. The thing about a place like Sick Kids is that you meet so many wonderful people, everyone is open and caring and there’s so just so many smiles and cute little faces. They really go out of their way to welcome you in to a place that, in all honesty, they wish you never had to visit.

You see, you visit a place like that and you see all those adorable smiling faces and talk to so many people and you quickly realize that…  us Autism parents, we really don’t have it so bad.

You don’t have to be there for very long before you see a bald child with very dark circles around their eyes, or a child with no legs wheeling around in a wheelchair, or parents sitting arm in arm, consoling each other as they cry so hard that they can’t even talk. These places truly work magic as you feel happy, welcome and close to everyone all the while you have tragedy all around you.

I don’t know the stories of these people in particular, I just know that I saw them today and I feel great sorrow for them despite not knowing… I know that, no matter how bad it’s been for me, I still couldn’t imagine what it must be like for them.

Then you hear the stories about these places, the stories where parents happily give birth to a new bundle of life only to discover that it already has cancer, and that it likely won’t survive. Still, they are determined so they go to a place like Sick Kids where the child moves in, where the parents move in… where against all odds, the child out lasts the predictions, the child grows and thrives. But after years of beating the odds, they finally succumb and ultimately leave the parents without a house, without a job, without savings and without the child that they’ve fought so hard for.

There are literally hundreds of stories like that and each and every single one is as tragic as the last and I look at my son sitting next to me, playing the Mario game that this amazing place has provided to put a smile on the faces of every child that goes in there and I think… is it really so bad?

You see these nurses and doctors with a smile on their face, every single one of them… they all greet you pleasantly, they all are genuinely happy to see you and your child and you know, you just know that yesterday, they day before, the week before…. some time, not so long ago, they’ve watched an innocent and very loving little child die. They’ve done what I simply can not imagine having to do even once, and they’ve done it as often as I’ve updated my blog, more even! And they will continue to do it because as hard as it is, it’s worth it to see the children that don’t die. The children that beat the odds, the children that can simply smile back, the children that can go home and just be healthy.

I don’t want you to think that I’m downplaying the seriousness of Autism, or any other disorder, disease or anything else for that matter. But when you see, when you really see just how tragic it really can be for some people, for some parents and some children, I can’t help but think… maybe I don’t really have it so bad after all.

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The Younger Sibling, Autism’s Worst Nightmare

By on June 21, 2010 in Autism

I’ve talked to people who tell me that they wish their ‘normal’ child would have more understanding when it comes to their Autistic sibling… my answer to that is… if they didn’t get on each other’s nerves, they wouldn’t be brother or sister. It’s like a law.

But I do understand what they mean, I live it every day… in my case, there can’t be any understanding because Cameron’s younger brother is only 2… yes, the terrible twos!!

Right now we have 2 issues on our hands when it comes to brotherly love…  one is Cameron’s personal space when he’s overwhelmed and the other is Cameron’s return home from school.

Cameron’s personal space is important to him, as it is for most people but more so for someone with Autism. Cameron will literally separate himself from people and play on his own, quietly, in an empty room for a good 15-30 minutes until the feeling of anxiety goes away and he’ll rejoin the people. He does this entirely on his own, when he needs it. However, tell this to a 2 year old and you might as well talk to a wall. His little brother Tyler will follow him and continue to push and push and push. We bought a little tent, not so much for camping but for just playing in and Cameron likes to hide himself away in it.. he even flips it forward so that the entrance to the tent is on the floor. This means there’s no way in or out.

Well, his little brother doesn’t like that at all because now he’s being excluded from something fun and he freaks out… fighting ensues.

The second primary reason for issues is when Cameron returns home from school. You see, at 2 years old, poor Tyler essentially stays home on his own most of the time to play games and do things with his mother. Sometimes he has friends over, or goes places, but a lot of times he’s on his own. And so when his big brother Cameron comes home from school at 3pm, he latches on for fun and games.

The problem with this is that Cameron is returning home from an already overwhelming day of learning and socializing. He returns home and would love nothing more than to grab a couple of familiar toys and play quietly, calming himself down but his little brother immediately glues himself to his side and tries to play with him.

Cameron typically responds by telling him he’s a bad baby, that he’s going to have a time out… you know, anything and everything that we’ve ever said in his life to tell him that he’s done something wrong. This causes Tyler to react by screaming and it escalates from there.

The best we can do in these cases is explain to them, each and every single time, why they’re behaving the way they are and what they should be doing to be nice to each other. At first it’s like talking klingon to a bunny rabbit… but over time they let it sink in a little.

In our case, Cameron is willing to give a little and play with his baby brother for a few minutes to make him happy before he finally has enough and leaves.

There’s only one thing I can tell you that makes any sense about it all…  some day, some how, they will look back on these times with fondness… although it may be 40 years from now. But in the end, Autism or not, the fights and bickering is pretty much to be expected. They’re siblings.

Just remember to put your ‘extra patience’ hat on and do your best to either let them settle it or solve it for them… just as any parent would.

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People Need to Realize that Autism Is Not Less, It’s More

By on June 18, 2010 in Autism

I think that something that is lost in the translation to people who do not deal with Autism, is that yes, Autistic people have less communication skills, less social skills, less ability to understand non-literal speech and on and on…. but that does not mean that there is less to the person. In fact, it could be argued that there is so much more!

What most people fail to realize is that a person with Autism does not miss details, they get it all. All the sights, sounds, smells.. everything. When you walk into a grocery store, your mind filters out the white noise… the buzzing, humming, mumbling, background music, stuff being moved around, people walking, doors opening and closing… on and on. An Autistic person can’t. And that’s just sound.  Next you take the harsh lighting, things moving everywhere, glints of light off things, flashing lights, labels on everything, colours everywhere, people constantly doing something with something… there’s a lot to see. We say excuse me to the person in front of us and look for items on our list or that’s on sale. And Autistic person can’t do that.
And then there’s the smells… I’ll spare you the gory details on that one.

Now, on top of the sensory issues, you also have to take in the fact that the computers in their heads are working a mile a minute as they process every conversation, work out the math on all the numbers in the place, study the geometry of the fruit… all of this is happening faster than any science fiction computer you’ve ever seen.

What happens is, and is to be expected, a mental break down where even the best and brightest on the planet would agree that it’s simply too much to bare. We’ve all heard of that fun little torture technique where you poke someone in the forehead long enough it drives them crazy, or there’s a high pitched sound you can’t get out of your head?  That’s one… one thing that happens for a matter of minutes… and it drives you crazy. Now imagine a thousand things… for an hour… for a day… forever??

If you are not touched by Autism, then it’s hard to understand… even harder still to understand why we parents and friends are so vocal and fight so hard for our loved ones… and why we hate you oh so ever much more than you hate us while you stare at us because our child screams in line at the cashier.

And if you are touched by Autism, your child, relative, friend… always try to remember that if it seems like they’re behaving irrationally, there’s likely a very good reason for it. Have more patience than you thought you could as you take a deep breath, slow things down a bit and have a look and listen around. You may find that they’re dealing with a lot more than you ever thought someone should have to.

It’s not their fault… it does not make them less… it makes them different.

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Something Many Parents Forget – Respect For Your Child

By on June 17, 2010 in Autism

It probably slips our minds a lot of times as we watch our children be silly, do dumb things, need to be shown how to do just about everything and so on and so on but make no mistake, they’re growing up in a world that we ourselves have trouble dealing with and we’re adults!

Life is hard enough any which way you slice it but when you consider the age in which we live where technology advances every few months, messages are sent at light speed, we have more ways to communicate then ever before and most of us live in perpetual information overload… our children are living it too, and mastering it!

Let’s not forget the usual stuff that has now gotten much more advanced, and I don’t mean technology. I mean things like bullying and the world providing false images of perfection on every magazine cover and commercial that you see… is there any wonder that you hear about tragic suicides in the news all the time?

That right there is a lot to grow up with but then you throw in something like Autism into the mix and suddenly you feel like you’re in a hockey game where the other team is bigger, faster and has a 5 goal advantage before the game even starts. I’d probably just drop my stick and skate off the ice ranting about how unfair that is and why even bother and so forth…. and I’m an adult.

It’s our job as parents to prepare them for all of that as best we can, to give them the tools, the support and anything they will ever need from us to be able to not just cope with that but to excel… to somehow get 6 goals and win the game anyhow.

I’d like to think that even if we failed and they didn’t win the game, that at least we gave it our best try, our children gave it their best try and we all had fun playing the game no matter the outcome.

Ok, enough with the hockey metaphor but the point is, as you hold their hand and roll your eyes at their silliness… remember that they are the ones going through it, they are the ones that have to take all that you give them and then make it happen. They are the ones with the unfair task ahead of them, you’re task is not easy either but you can’t do it for them.

When I say that I respect those that can that can endure and overcome all insurmountable odds… do you imagine athletes or do you picture our own silly little chocolate faced monsters that refuse to hang their coat up?

I don’t think I could ever explain it but when I think about the life that my son will have, all that he’ll have to overcome, I feel bad, uncertain, scared… plus I respect him for it and all that he’s done thus far. It’s that respect which allows me to look at him differently, more positively, more proudly.

I don’t envy our children, they have quite the interesting future with a lot of uncertainty and challenges ahead of them but if anyone can do it, they can.

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The Universal 3 Point “Guide on How To” When Dealing with An Autistic Person

By on June 15, 2010 in Autism

I’ve seen a lot of these ‘guides’ floating around, how to be their friends, how to think of them, what they wish they could tell you, etc… some are rather enlightening, many contain pretty common sense stuff that you should apply to everyone, not just someone with Autism.

The ones I find amusing, yet scary, are the ones that try to pad them out to be a nice round number like 10 or to sound like they have a “lot” to share with you by having a high enough number. But what I find even more amusing and scary is that every single one of these people know that no two Autistic people are created equal, therefore generalizing is a tricky thing to do. Not every child will react the same in every situation and thus, guidelines are exactly that, guidelines… not rules. Learn from them, don’t take them too seriously. How you interact with an Autistic person will vary.

Anyway, it was after reading a few of these that I summarized all of them into 3 simple points, which I tweeted in well under 140 characters and I think did a good job of summing it all up without generalizing to the point of excluding anyone… although, this will fall into the category of applying to everyone, not just Autistic people. So my apologies if you were expecting some ground breaking new way of thinking that pertained only to Autism.

Don’t Tell Me. Inform Me.

Autistic people can’t express themselves as well or at all, and they tend to take in information in a literal sense. For example, if you tell them that you feel like a pizza, they’ll picture you feeling like dough covered in cheese, sauce and pepperoni. Instead, say “I want pizza for supper.”

That being said, they’re not just robots that you can feed information into and tell them how to think. I think it’s fairly safe to say that if you’ve had any kind of extended period of time with an Autistic individual, you realize that you can’t force them to do anything or to think anything.

Give them the information they require to visualize and conceptualize for themselves and form their own opinions and decisions. My hope is that my son grows up to pick a political party on his own, based on the facts he learns and bases his vote on what he thinks is best. It’s not my place to tell him.

That brings me to…

Don’t Include Me. Involve Me.

I don’t think most people realize exactly how much of a difference there really is… I see this happen in regular programs with regular kids that try to “include” special needs children.  Most do a good job, but some feel that simply having the child there watching, or sitting close enough to the action, that they’re somehow involved.

The really great people are the ones who find a task or a way to get the special needs child involved. For example, on my videos page, there is a video of a boy who was the helper of the basketball team. He loved being involved, he loved being an important part of the team and when his time came, he laced up his shoes and became a star! It was because he was involved, not just included.

That brings me to the last one…

Don’t Judge Me. Accept Me.

I think this one pretty much speaks for itself, not just for Autistics but for all people who feel… out of the norm.

For me, when I think of this, I think as a parent would when I am out in public and my son loses his cool and throws a temper tantrum like only an Autistic person could. I see the other parents judge me and I think.. if they knew, it would be different.

Autism tends to lend itself to this very well because on the surface, most people don’t and can’t recognize there’s anything wrong beyond the person just being bad, dumb, silly… crazy even. Perhaps if a puzzle piece shaped scar appeared on children with Autism, this one wouldn’t be a big deal.

Stop looking at me, the parent… and stop whispering to the person next to you about how bad behaved my child is. Stop thinking my son is rainman, stop thinking he’s retarded….  just stop thinking about everything you’re thinking except… there’s a man with his son. Because that’s all we are.

So there you have it, all of the lists on all of the sites on all of the internet summed up into 3 little points. Autistic or not, young or old… practice these 3 things with the people you know. It’s not just a list of nice little words of wisdom, they’re the building blocks to friendship, to a community and to peace.

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