About Stuart Duncan

My name is Stuart Duncan, creator of http://www.stuartduncan.name. My oldest son (Cameron) has Autism while my younger son (Tyler) does not. I am a work from home web developer with a background in radio. I do my very best to stay educated and do what ever is necessary to ensure my children have the tools they need to thrive. I share my stories and experiences in an effort to further grow and strengthen the online Autism community and to promote Autism Understanding and Acceptance.
Author Archive | Stuart Duncan

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

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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The start of something finished

Well, 2012 really sucked for the world of autism. Between 50 cent and his dumbass remarks on twitter, doctors placing a lower value on an autistic life, Jenny McCarthy calling autism moms “victims” if they aren’t trying to find a cure and what has to be the absolute worst, the media attempting to find a correlation between the Sandy Hook shooter and Aspergers.

Even for me personally, it really sucked as my wife decided we need to get a divorce… just before Christmas.

The good news? The past is the past. 2012 no longer exists.

This is 2013 and things are going to change.

Ignorance is being forced to apologize, the only moms that are victims are the ones that believe McCarthy’s stupidity. And the media were falling all over themselves with articles about how there is no connection between autism and violence.

As for Paul Corby and his heart transplant… I sincerely hope that the doctors received a good firm slap in the face and changed their minds. But I haven’t heard anything.

The autism community is getting the message out there. People are talking and when they’re wrong, there’s someone there to correct them.

Autism is not something to be feared, laughed at or used as a way to guilt moms into doing what you want them to do.

Not the media, celebrities, lynch mobs or even divorce can stop the wave that is heading towards governments, communities and audiences everywhere.

It’s a wave of truth, understanding, positivity and love that is a much needed set of emotions in this ever increasingly dark world.

It’s so easy to find the wrong information, to spread the wrong information, to be a hater and to ignore what you don’t want to hear.

But a force, such as the autism community is becoming, can’t be ignored and it can over come any misinformation that the media or celebrities can fling no matter how wide their audience is. In fact, the larger the audience, the more likely the backlash.

2013Don’t let up though. Don’t coast that wave.

Rise up out of your seat and correct those people that are getting it all wrong. Write and phone those media outlets, those celebrities, the government and anyone else that isn’t getting it right.

Shut down the haters, force the ignorers to listen and don’t give ignorance a free pass.

A lot went wrong in 2012 but a lot went right too. And I’m proud of most of the aftermath.

But more can be done. More can be achieved. More people can be reached. More that is broken can be fixed.

2013 might not be the end of the story but after what I’ve seen in 2012, I can see the start of the finish on the horizon.

People will accept all differences.

In the world around them, themselves, in our loved ones, in ourselves.

They’ll have to. Because we won’t stop.

And we’re just getting started.

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When a child with autism first starts to recognize bullying

I find that movies are great ground breakers for my son Cameron as he tries to learn and understand social situations. We try to point out who is sad, who is happy and why.

ParanormanThis week, we watched ParaNorman for the first time. It’s a fun animated ghost movie where Norman, a quiet little boy, is able to see and talk to the dead.

This causes him all sorts of grief as the adults shake their head when he walks by and other children call him “freak” and laugh at him.

Near the beginning, introducing the main character and his life, he gets caught up in what the dead are doing, completely missing what his teacher is saying and the other children laugh at him. Other accidents happen, they laugh some more and it ends with him sulking away from his locker that says “freak” on it, for the second time that day.

It was at this point that Cameron, completely on his own, said “aww… poor kid.”

Now, I’m not going to get into the whole “do children with autism lack empathy” thing because, they don’t. However, one aspect that is quite common is the difficulty in being able to look at a situation from another person’s perspective. This is something that is difficult for all children. It’s just more so with autism.

When a child sees another child do something funny, they laugh. They don’t recognize if it’s embarrassing, hurtful or mean.
When a child sees another child as strange, odd or bizarre, they treat them as such.

Many times, it’s fully intentional and they truly are a bully. But sometimes it’s simply a lack of understanding that what they say and do is so hurtful.

I find, the best way to teach Cameron that what he says and does, while funny to him, could hurt someone else, is to show him from an entirely fresh perspective, as a 3rd party.

And that usually works to a point. He sees it, recognizes it… doesn’t truly understand it.

So when this part in the movie came on and he not only recognized the bullying but expressed his emotions about it, I was a bit shocked.

Of course this sparked a whole conversation with him about bullying and how bad someone can feel when you call them names or laugh at them but not as a lecture but rather, as something he was starting to understand and even explain back to me.

For any child, this is a great step. For a big brother, this is a momentous occasion, especially for his little brother. And for a child with autism… this is huge.

He gets it. And he expressed it.

I’m very proud of my boy.

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Making the best of it

For a long time in my life, I was very depressed. I wasn’t going anywhere, doing anything, I had no goals and worst of all, I felt that my life simply had no chance of ever getting better than what it was at the time.

Then I got married.

Strange huh? To go from depressed to married. Well, there was a lot that happened in between but those stories aren’t what’s important right now.

What is important is the vow I made. You know, the vows we all make through marriage… “good times and in bad, in sickness and in health”… I took those vows seriously. More so than that, I paraphrased them and made them my own new life motto: “Make the best of it.”

When my son was diagnosed with autism, I made the best of it. When my wife was pregnant with our second child and had to spend 6 months of it on bed rest, I made the best of it. When my wife was diagnosed with fibromyalgia and could barely get off the couch, I made the best of it.

People told me I would crack, have a nervous breakdown or worse, leave… I didn’t. When people asked how I handle the stress, I told them that I just take one day at a time and I, of course, make the best of it.

Now those days are behind me and my wife is gone. Our children are being split between us 50/50 where I get them for one week and she gets them for one week.

I’ve been with my kids almost every day since their birth and even more so in the last 5 months. With their mother working extra hard, my boys and I were glued together (other than school) every single day.

And after 5 months of that, they’re gone for the week. And this house feels ever so quiet now. No wife. No kids. Not even the dog.

So what do I do?

shrimp

Shrimp = Great snack food!

Well, I’ve been eating some foods that I haven’t had in years, due to the wife’s healthy diet, my son’s gluten free diet and our lack of budget. I’ve been watching movies I have been dying to see. I’ve been playing video games that I haven’t touched in almost a year. I’ve been reading and learning new skills in my field of expertise to better myself.

I posted some pictures on Facebook to which one person replied “you’re not supposed to be enjoying this! lol”

And I got to thinking.

She’s right. I’m not supposed to be enjoying this. What I’m supposed to do is feel alone and quiet and maybe even sad. After all, I do miss my boys tremendously right now. My wife too, but more so my boys since we were together so often for the last 5 months… just the 3 of us.

But why? Why do to that to myself just because I’m “supposed to?”

I thought back to the bed rest, the diagnosis, the struggles with money, the decisions and sacrifices we’ve made and I thought to myself… no, I’m not going to do what I’m supposed to do.

I’m going to make the best of it.

I have the house to myself, I’m going to keep myself busy in the best way I know how and when the week is up, my boys will come back to me. And again, during that short week that I get them… I’m going to make the best of it again.

happy cat

My cat – making the best of an empty house

The way I see it is, when times get hard or life throws mud in your face, you have 2 choices:
1. Do what you’re supposed to do and let it get you down.
2. Make the best of it.

It’s kind of like that whole “when life gives you lemons…” cliché, except, I’m going to make myself a steak and watch a good movie with my lemonade.

Because life is to short to do what you’re supposed to.

Instead, make the best of it.

One day you’ll look back on your life and be glad that you did.

 

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Find another way

Cameron has started this year in a new, more academic class than last year. Up until now, he’s been learning a lot but the primary focus as been on building upon the things that he’s been struggling with. Things like his fine motor skills and socializing.

This year, he’s doing math and spelling tests. He’s also learning about mammals, reptiles and amphibians. It’s exciting stuff! And he’s loving every minute of it!

Well, almost every minute.

While working with him at home, I have him write out his spelling words for two reasons… one is so that he can learn them and do well on his spelling test but also, so that he can practice his penmanship.

My wife, Natalie, brought up an interesting point though, one that we’ve now mentioned to the school.

Cameron has a terrible time with his writing. He doesn’t like writing and he knows he’s not good at it. And it weighs on his mind.

spelling test

Missed the “r” in morning

Looking back at some of his spelling tests, the words that he got wrong or the mistakes he made were words and mistakes that he shouldn’t have gotten wrong.

For example, in almost all of his spelling mistakes, it’s due to him missing a letter. Not getting a letter wrong or mixing them up, he is leaving out entire letters.

Natalie is the one that realized that, he’s not getting the words wrong because he doesn’t know how to spell them (or sound them out), it’s because his mind isn’t on the word… it’s on his writing.

He knows that his writing doesn’t look good and he knows that he has to fit the answers in a little space on the page. So he puts in extra effort to be sure that the teacher can read it and that it looks ok… because, you know… you don’t want anyone to laugh at your writing. Yes, he worries about that.

So I brought it up with the principle yesterday and if all goes well, hopefully testing can be done, or at least made available, electronically. So that if a student prefers, they can type their answers, either at a computer or some device with a touch screen.

And we’re lucky. We’re so very lucky that this school is so understanding. As I brought it up, I could see the principle understanding exactly what I meant. When I said “when a child with autism starts to get flustered… ” he finished my sentence with “their whole day could be shot after that.”

Yes!!

Do I want them to stop working on his writing and fine motor skills? No, of course not!!

But I don’t want those challenges to get in the way of other things either. He knows those words. He knows the answers to the tests. And his anxiety over his writing skills should not be getting in the way of that.

The reason that I’m writing about this, is not just to illustrate what’s happening in Cameron’s life at the moment (although there is that too), it’s to provide an example where sometimes you have to be involved, be aware and when possible, find another way.

Parents, you need to recognize these things in your children. Perhaps they are being held back by something that no one else would ever be able to recognize. Perhaps there is some other way that may work well for your child. And most importantly, you have to try to provide some solutions.

Granted, as I said, we’re lucky. My son’s school is awesome. And not everyone has a school like his. Not all schools can or are able to accommodate a change like that.

But that doesn’t mean that you shouldn’t try.

If something isn’t working, or could be working better, you have to try to find another way.

Nothing can stop you, so long as you never stop trying to find another way.

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