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

The subjective relativity with which we define “normal”

By on April 17, 2012 in Autism

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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Overcoming Self Doubt as an Autism Parent

By on April 13, 2012 in Autism

The hardest part, I think, to being an autism parent is the doubt. Not just in general but the self doubt in particular.

am i good enoughWe ask ourselves

It doesn’t really matter where your child is on the spectrum, we all ask ourselves the same questions.

Am I doing the right thing?
Am I strong enough?
Am I smart enough?
Could I find a way to make more money?
Could I fight harder/smarter to get the services my child needs?
Am I listening to the right people?
Will what I’m doing now, be enough?
Am I making the right choices?

To be fair, these are questions that pretty much all parents ask themselves but it’s just so much more so when your child has autism (or any special needs).

Personally

I’m not supposed to write this… I’m supposed to keep up the illusion of competence. Some people believe that I’m a wonderful father and I have all the answers…

People visit blogs like this for that. They like to be able to relate to the struggles to… but mostly, they look for the positivity. Especially from me. Because it’s what I usually do.

My wife often bugs me about being “the great autismfather” on the internet because I get some great feedback from readers and on social networks but the honest truth is… I have doubts. In the future. In what I’m capable of. In myself.

I know my son is going to turn out great.. because he has greatness in him already. But still, I worry. There is a lot of time between now and when he’s on his own. There is a lot that is going to happen.

It doesn’t matter if someone out there thinks I have all the answers. I don’t.
It doesn’t matter if someone out there thinks that I’m a role model. I’m not.

Right now,  I’m not making much money. I’m not sure what to do about certain behaviors that we just can’t seem to get our son out of. We have sports and other events coming up in the summer that we can’t afford, we’re not sure we could take time away from work for or that our son would even be ready for socially or physically.

Don’t get me wrong, this isn’t a pity post. So please don’t leave comments telling me to keep my head up, or to offer me advice on how to get through it…

I’m sharing this to prove a point. Even if you think someone is a great parent, even if you think they’re a perfect parent… no matter how confident or smart or wise or positive they may seem sometimes… you will still find self doubt. That person will still be asking themselves the exact same questions you may be asking yourself.

When it gets to be too much

The point is, it’s ok. It’s perfectly natural to ask those questions and to doubt yourself. Everyone does it. Some do it more than others but everyone does it.

The problem is when it takes over and moves into the realm of depression. Because then, your self doubt starts to become a self fulfilling prophecy. You will fail where you wouldn’t have otherwise.

For me, and I’ve seen it in others too, when I start to hate myself too much for not being able to do enough… I have a hard time finding the will to do anything. So I don’t. And then I hate myself for that too. And it spirals.

I guess the trick is not to dwell on it. If the self doubt is going to be there, no matter what, then don’t dwell on it. Because when you do, when it’s all you think about, it consumes you.

Either you wake up the next day, shake it off and tackle what ever that day has to offer…. or you don’t.

That’s when your strength, smarts, income, abilities and everything else won’t be what holds you back, it’ll be your self doubt.

Focus on the positives

They say to think happy thoughts and just be proud of yourself for who you are and what you’ve accomplished. I’m not a self help guru so I can’t really put it more eloquently than that. Nor am I very good at dealing with my own self doubt most of the time which definitely makes me one of the least qualified people to guide you through it.

But I will say this… my children are happy. They’re fed. They are wearing clothing.  They are out of the rain. They love me and they are loved too.

I’m not sure how long that will last, because I have self doubt. It’s in my nature to think that I’m not good enough going forward. I’m a parent. An autism parent.

But for what it’s worth… right now… I’ve done better than I thought I would. So maybe I’ll do better in the future than I think I will too.

And I bet, if you have self doubts, you too will find that if you look around and take stock of all that is in your life right now… you’ll find that you haven’t done half bad either.

It’s ok to have self doubts. But it’s also ok to slow down once in a while, keep an open and objective mind and appreciate what you have.

You’ve earned it. You got you there.

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Murder… torture… I don’t just lose faith in humanity, I am disgusted by it

By on April 12, 2012 in Autism

humanityI like to think that I generally try to see the positive in things and even try to be positive most of the time too (although that is often a fail)… but I’m having a harder time with it lately.

To maintain my positive aura, I didn’t speak out against huge tragedies just because.. well, they’re huge tragedies. I probably should have but it’s really hard for me to do.

Murder

I didn’t say anything when one parent killed their autistic child, Glen Freaney.
I got a little sick to my stomach when another parent killed their autistic child then herself too. Her son’s name was Ben Jensvold.
Then I heard about George Hodgins, a 22 year old autistic who was killed by his mother just before she killed herself too.
Shortly after that, Daniel Corby, another innocent autistic child killed by his parent.

These aren’t even the first, not by a long shot. These are just some of the latest that I’m aware of.

It’s a disturbing trend.

Torture

Then came the video… an alarming news story from the Judge Rotenberg Center in Canton, Massachusetts. This video shows trained professional therapists using electro-shock therapy on a young autistic (teenager) simply because he didn’t want to remove his jacket.

When he refused, staff electric shocked him and he tried to hide under a table. They dragged him out and tied him facedown to a restraint board where he was kept for seven hours without a break, and shocked a total of thirty-one times.

While he was being tortured, he cried out for help… they laughed.

Is this humanity? Is this the world that I try to be positive for? Is this what I’m supposed to be excited for my children to grow up and be a part of?

What came next

There’s more though. As if this isn’t enough to make me give up on the human race entirely. Tragically, there’s more.

The media and even worse yet, the people who comment on those stories, all feel pity for those parents. They show their compassion by explaining how hard it was for them, all the heartache they felt, how they had nowhere to turn and no one to talk to….  those poor poor people.

Really? I realize they’d never condone the killings but really? Compassion? Pity?

If I had lost my faith in humanity because the murders happened, I gained disgust in humanity due to it’s reaction.

Murder is not ok. It’s never ok.

Child, adult, easy, hard, happy, sad, struggle, celebration, special needs or not… murder is not ok.

There is no pity. There is no compassion.

They killed someone.

Not just someone. Their child.

The rule is supposed to be that the child outlives the parent. Autistic or not. Special needs or not. That’s how it’s supposed to work.

Sometimes it doesn’t work out that way but generally, that’s the rule. There are no conditions to the rule. There is no “unless in the case of” exception to the rule.

Is that where humanity is now? We kill our children when life is hard? Humanity is ok with that now? Because if it’s supposed to be human nature to say “it’s understandable, their life must’a sucked”… then I want no part of it.

The world lost some beautiful souls and that is the news story. Not the troubled life of the parent. Not the struggles they faced or had yet to face.

If you skimmed the 4 links above, please go back and read one more time. Read the names. They are the victims. They are the real stories.

Which brings me to the video of torture. It’s not therapy. It’s torture.

What disgusts me more than the fact that it happened?

The fact that it happened 10 years ago and we’re just seeing the video now.

That’s what disgusts me. That’s what humanity is doing now to disgust me.

Somehow, those animals were able to not only torture kids, but able to have courts not tell anyone about it for 10 whole year.

How did this happen? Red tape? Bureaucracy? Politics?

I don’t even care what it was or why. The fact that it’s taken this long… I can’t understand it.

And what’s been happening during these 10 years? Have the animals stopped torturing kids? Or have they just learned how to better cover it up?

Speculation aside, filling my head with thoughts too unbearable to think aside… 10 years.

Someone, somewhere, decided not to put a stop to this. Someone, somewhere, decided not to share this with anyone.

I may have been wrong

My son has autism… and I fear for him. I fear for his life, I fear for his well being, I fear for his sanity… as he gets older, this is the “real world” that he will be faced with.

I do not fear for his humanity though.

Because if this is humanity; torture, murder, justifying it, sweeping it under the rug…  this is not the type of humanity I wish for my children to have.

If this is humanity, I don’t want them to have any part of it.

My children will grow up to love each other and others, to try to prevent harm from others not to inflict it, to value life, not take it or damage it and to do what’s right, when it’s right to do it.

Because that’s what I have faith in. That’s what I will never be disgusted by.

I used to think those characteristics were the traits of humanity.

I’m starting to think that I may have been wrong.

Comments { 9 }

Our autistic child’s first sleep over

By on April 11, 2012 in Autism

This post was written by my wife, Natalie, and editted by me, Stuart. This is, in her words, how Cameron’s very first sleepover went and how she handled issues when/as they came up.

sleeping

We autism parents envy other parents for a lot of reasons. One of the biggest reasons can best be demonstrated by… the sleep over.

We all want our children to have them. Autism parents have to wonder if it’ll even be possible though. Depending on where our children are on the spectrum, it might just not be a possibility. For those with children who are ready for social play, sleepovers are possible but they’re still not without their challenges.

As a parent, there are a lot of questions that come up with this subject; Is my child old enough? Will his routine be followed? Will he need me for anything? What if he’s up too late? Should the first sleep over be in our home or at a friends? And the list goes on.

We are very lucky with Cameron. He has friends, he can communicate quite well and can even be social (albeit awkwardly, but still social). This particular friend just loves him and does not see Cameron’s autism as an issue for their friendship. We cannot begin to tell you how blessed we feel to be able to say that!

But with all that being said, a sleepover between a neurotypical child and an autistic child (and let’s not forget the little brother too!) has its challenges.

Concerns

A sleepover is a time of excitement, yummy foods mommy usually doesn’t allow, staying up late, pillow fights and tons of fun. That can be over stimulating for any child. It can cause a child to become hyper active or even careless. But in the case of an autistic child, well most of you know it can turn ugly, very quickly.

Tantrums, stimming, screaming and hitting are just some of the issues that can come up.

So how do we, as parents, prepare for an event like this while still keeping it as normal as possible? I need to pause here and explain what I mean by “normal“.

Cameron will read books, watch tv and hear stories about holidays or things like sleepovers and based on those, he will have a concrete set of rules for how these holidays and events should be.

Before we even broach the subject of a sleepover, he already has a list ready of things that need to happen from what he’s seen and read. So changing out something, like popcorn for a fruit snack, would be completely out of the question.

The sleepover: Before bed

We decided the best approach would be to have the friend stay with us for the sleepover, rather than have Cameron sleep out. Special diet, routines and techniques to ease Cameron’s anxiety are too much to throw at another parent for one night.

When Cameron’s friend showed up, Cameron (and Tyler) greeted him happily at the door. They watched a movie, played games and with toys, had time for a video game (Mario Party 9 was a big hit) and enjoyed some yummy snacks (popcorn).

So far, so good! No meltdowns and everyone was getting along and playing nicely. A huge success all around.

The sleepover: Time for bed

We set the boys up so that all 3 could sleep in one room. Cameron was in his bed, his friend was in Tyler’s bed and Tyler was on the floor, using couch cushions. All of the boys were tucked in for the night and going well.

We got that wonderful feeling of relief when we were able to put our feet up and call it a success.

However, that feeling did not last long.

His friend kept calling us into the bedroom saying things like “Cameron is too noisy!” and “Cameron won’t stop talking!” I knew what the problem was, but I wasn’t quite sure how to address it.

You see, Cameron has to “stim” before going to sleep each night. We’re not sure why exactly, he just needs it. Either it settles his mind, or he just needs to get it out of his system… we don’t see the harm in it so long as he sleeps.

If I took Cameron out of the room would the friend be upset? Would Cameron be upset? Would they sleep?

I asked Cameron to come out of the room and talk to me. I talked to him about falling asleep in our bed and then later having Daddy put him back into his bed. That way he can still wake up with his friend in the morning. I also asked the friend if it would be ok for him to fall asleep with Tyler and not Cameron.

Everyone agreed! (a miracle right?)

I explained to Cameron that stimming before bed (which he does every night, no exceptions) was ok, but it was keeping the friend awake. If he sleeps in our room he can stim as long as he needs to.

We’re lucky to have Tyler. He often acts as a buffer for Cameron, helping him in ways I’m not even sure they notice yet.

Going forward

In our case we were able to reason with Cameron, talk out the situation and come to a solution together. We’re very lucky to be able to do this with a 6yr old, especially one who is autistic

We now know what issues may arise if Cameron were to ever be asked to sleep out of the home. We’ll know what to expect and how to prepare the parents.

Don’t be afraid to let your child try new things. Sometimes it may not go so well while other times they may surprise you! But you won’t know what your child is capable of if you never let them try.

We were pleasantly surprised and will now be even more prepared for the next sleepover.

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My son is becoming a “low talker”

By on April 10, 2012 in Autism
seinfeld "low talker"

Seinfeld: "low talker"

If you’ve ever seen the episode of Seinfeld, where he dates a low talker.. you know immediately what I’m talking about.

For those that haven’t, let me give you a run down of the situation.

Cameron LOVES his video games. Some would say obsessed… but he has proven to be able to live without them. He can spend time at the cottage without video games and even here at home, he only gets to play during the week-ends.

Still though… he loves them so very much that generally, it’s all he ever wants to talk about. On the drive in to school, he tells me all about the levels he has to beat and how to beat them. He describes the actions that characters can and will most likely take. He recounts entire levels that he’s played previously… even though I was there playing with him.

He’ll tell me, his mom, his cousin… anyone. He talks and talks and talks.

Now, if you know autism, you know that many children with autism never do learn how to talk. They may or may not find other ways to communicate but talking just isn’t one of them for some people.

I know this and I’d never want to discourage my boy when I know not take this sort of thing for granted. Still though… how many can you listen about Mario or Sonic? A day? A week? Months? Years?

So anyway, even if we don’t ask him to stop, he realizes that we’re not nearly as interested. He knows that we’ve moved on to other things or are simply too busy doing other things to really pay full attention to what he’s telling us.

As a result, he’s slowly becoming a “low talker”. What I mean by that is… he continues on talking about video games, but he does so quietly, not really to himself, but such that only he can hear it. So he’s still telling us, or anyone, but no one will ask him to stop… people can go about doing what they’re doing while he’s talking… he doesn’t interfere with them.

There have been times where he’d talk about a video game for a solid hour, as if talking to himself, only… he’s actually talking to someone. He just doesn’t care if they’re listening or not.

Everyone in the house is aware he’s been talking away for an hour. Everyone knows what he’s talking about. But no one can hear the words he’s saying. Not even the person he’s talking to.

On one hand, I’m impressed because he’s found a way to continue on without bothering anyone. On the other hand, will this behavior be looked at positively by others later in life?

As I said, I don’t want to discourage him from talking about the things he loves either.

For now, he’s found a solution that works for him. So I’m more than happy to let him keep going with it.

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