Tag Archives | brothers

Autism advocacy of the future – our children

By on April 6, 2013 in Autism

megaphone-300pxAutism has been around a very long time. It’s definition? Not so much. But even in the last 60 years or so, awareness has and even the definition of autism itself has changed quite dramatically over time.

It started with one doctor, then a couple of doctors and eventually a medical community that would dare to write about it and so on until today, we have parents and even autistics themselves emerging as, not really the dominant voice but certainly a loud and powerful one. At least, it’s getting there anyway.

It’s encouraging but I know that there is still a long road ahead. With constant battles between whether or not the “low functioning” or “high functioning” groups should get the more prominent voices, whether those that want a cure or those who want acceptance should be heard the loudest or most often… progress will surely still be made but there is no solution to the fights or even societal acceptance/understanding any time soon. There is obviously still a lot of work to do.

I have two children. One with autism and one without. I do not know if they’ll continue to advocate for autism in the future but if they do, I’d like to think that no matter which approach they take, that they’d be listened to.

One as a self advocate, one as a sibling, one as an autistic parent maybe and one, possibly as an autism parent. It’s in their genes, this I know. So the future is ripe with possibilities of any scenario.

I’d like to think that, if my advocacy has meant anything at all today, that one day in the future, no matter what their role, no matter which end of the spectrum or what their goals may be, that no one ever try to silence them.

If they’ve learned anything from me at all, then they will know that their own hard work, their own message, their own passion… that is what will drive them in the future. That is what will make them heard. That is what will move people to listen.

And most of all, no matter what, no matter who and no matter how much they try… never ever, not ever, let anyone tell you stop.

Both of my boys have a lot to offer and they still have a lot of growing to do. Should they decide to, should I do my job effectively, I can only hope that they would advocate together, as a team… an unstoppable force, instead of against each other.

Because that’s the kind of advocacy I want for my children, for all of our children and for the future.

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Autism Awareness of a different kind

By on April 5, 2013 in Autism
Cameron and Tyler - Brothers

Cameron and Tyler – Brothers

I would like to take a moment to tell you about my son. Not so much for you to get to know him but to simply be aware of how hard it can really be sometimes.

My boys started indoor soccer this year. While my son stood there, shoulders up beside his ears and tears in his eyes, he’d repeatedly run to the bench where I sat for a big hug. He wasn’t afraid exactly, but he felt extremely uncomfortable. Meanwhile his brother ran up and down the gym, worked with his team and even got himself a goal!

At a friend’s birthday, my son refused to go and play with the others. It was laser tag, in the dark with a few bright lights and lasers and lots of loud children running around. It was all too much. For his senses and his fears. He chose to sit it out. While the children all laughed and talked over presents and cake, my son insisted on sitting with me at the end of the table where he didn’t interact with anyone else except to nod his head when asked if he wants cake.

When I drop my boys off at school each morning, my son stands there, begging to stay home. Begging to stay with me. Begging to “no school”, as he phrases it. As other children say hi and ask him to play, he ignores them. Not so much as a head shake or a shrug. He cries, his gaze focused on me. As I go back to my car, he ventures out of the school yard, to the edge of the road… this morning, he inched his way onto the road until I finally went back to him to insist that he needs to be there, that he needs to finish this one last day before we can spend the whole week-end together. It fell on deaf ears. As I leave once again, he trudges towards the school, head down, crying his eyes out and ignoring his classmates as they ask him if he’s ok or if he wants to play.
Meanwhile his brother barely sticks around long to get his backpack over his shoulder, running off as quickly as he can to soak up every available minute to play before the bell rings and summons them inside.

The son I’m talking about? His name is Tyler and he does not have autism.

His brother, the one that plays great soccer and is eager to laugh and play with friends is his brother Cameron, who does have autism.

Autism isn’t always as obvious as you might think.

Aware?

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Explaining death? Easy. Explaining not existing before life? No so much.

By on January 9, 2013 in Autism, Parenting

brothersMy boys, Cameron (7 with autism) and Tyler (5 without autism) often have conversations about when they were babies. They’re obsessed with talking about what they did as babies or what babies do and at what age they started doing things.

This morning, we were talking about an old television show that we all used to watch when they were babies and the strangest thing happened… Cameron was convinced nothing had happened before Tyler was born. In his mind, he was always and will always be 2 years older than Tyler and therefore he could not have been around at all until Tyler was born so that he could be 2 years older.

It’s a weird one to wrap your head around but in a weird way, from his point of view, I sort of get it. He relates almost everything in his life to how old he and his brother are. Because he’s 2 years older, everything he does is at a higher level or done sooner. But always with his younger brother.

So when I tell him that he was 1 and we would snuggle on the couch to watch television, he asks where Tyler was.

When I explain to him that Tyler wasn’t here, he wasn’t born yet, he didn’t exist yet… I get a chill from the emptiness in Cameron’s eyes as he looks at me like I had just explained quantum mechanics to him.

He doesn’t understand it at all.

Now death? Death he gets. You’re here… and then you’re not. You stop existing. You go to heaven, you go to sleep forever, you just blink out… what ever. I don’t think he’s given it much thought but he understands that once you’re dead, you’re gone.

But to not exist before you, well, exist, is an incredibly difficult concept to digest. How can that happen?

I think it’s especially difficult in that they’re 2 years apart, making it impossible for Cameron to remember life without Tyler.

It’s not like a quick birds and the bees talk can fix that either. Because in his mind, Tyler was and always will be there. Whether he’s satisfied with “he was still in mommy’s tummy” or not comes and goes but for the most part, I don’t think I can ever convince him that we did things before Tyler ever existed.

The scientific, logical side of me wishes that I could explain it better or help him to grasp it better or even, which is wrong of me, that he could be smarter so that he’d get it. I know he will one day, 7 is still young but hey, we wall want a Doogie Howser for a child.

But the more emotional, sentimental part of me is quite happy with him thinking of his brother as always being there. They’ve always been together and hopefully always will be. To him, there is no life without his little brother and I’m quite fine with that.

If Tyler had to be -2 when Cameron was born, then so be it. So long as they’re in each other’s lives.

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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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A funny thing happened on the way to an autism discussion

By on April 6, 2012 in Autism

I have two boys, one with autism and one without. I happen to think of them equally most of the time and I tend to also talk about them equally.

This sometimes leads to some confusion when I tell everyone that “my son did” something.

And it doesn’t mater what I say he did… it could be the most polar opposite thing that an autistic would do and someone will remark about how their autistic child does that too.

Seeing autism where there is none

These are usually parents but even sometimes autistics themselves who will relate to my younger son, the one without autism. Sometimes it’s understandable, as he may be doing something characteristically autistic, such as shying away from others/crowds, having a meltdown… these things sometimes make me wonder too. Truth is, he’s clearly not autistic. It wouldn’t take you more than 5 minutes with him to see that.

At first it was kinda funny and I’d be sure to explain that I’m not talking about my autistic son… but then it happened more and more until finally I was having full conversations with people about how much this happens to other people too.

Sometimes the mistake is understandable, sometimes it’s a stretch and other times it’s like… there’s just no way.

Setting up the assumption

In a way, it’s a bit leading to begin with… I mean, you’re in the autism community, talking to others in the autism community, in their mind, they’re already preparing for an autism discussion. It’s hard to switch modes once you’re in that frame of mind.

My name in most places is autismfather. So when someone sees my name, they assume that I’ll be talking about an autistic kid. It’s pretty much a given.

This can “direct” the conversation right from the get go. I get that. Still though, I can try as hard as I can to make it clear that it’s not my autistic child that I’m referring to and still get a response about how they can relate due to their own autism situation.

Cameron and Tyler

Cameron and Tyler

Not that I’m complaining

The thing I’ve come to realize is that it’s not really a bad thing, it’s a great thing. The more a typical child can be mistaken for an autistic child, the better. Because it means that the lines are blurring. Even if it is still mostly within the autism community rather than the rest of society.

It’s still a bit comforting to know that my children’t aren’t so different. That I can talk about either, in most situations, and no one will be able to tell if I’m referring to the one that has autism or the one who doesn’t.

Is that how it is for everyone? No, most certainly not. Some people have children that are unable to speak or “function” as would be expected for their age… and so the signs are much more pronounced.

But for me, it’s great to know that Cameron is doing so well that I could mention something that he or his brother are doing and most people wouldn’t be able to tell which son I’m talking about.

It doesn’t make Cameron any less autistic nor does it make Tyler any more autistic, they’re still very different from each other and still both with their respective strengths and weaknesses… but there’s enough of a similarity there that people are unable to just know which one I’m talking about.

And in a way, that gives me hope for the future. For both of them.

Because Cameron is far better off if he can be confused for his brother and, even though some people that think negatively towards autism may disagree, I feel that Tyler is actually better off if there are some ways that he can be confused for his brother too.

Feel free to think he has autism. Feel free to see autism where there is none. I don’t mind at all!

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