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

Crap or Cone

By on September 21, 2012 in Autism

One of, if not the, most positive people I have ever had the pleasure of meeting is a pink haired, very flamboyant man named John “Halcyon” Styn. In the time I had known him, or known of him, he had never been involved in any drama, he never seemed to be where problems were or bad things were going down… he just always seemed to have a smile and was always happy to see you. Even if you’ve never met him before.

Recently, he gave a TED talk. If you have never heard of TED talks, I highly suggest you take some time and sit and watch some. The top minds in the world give short talks that will forever change your perspective on life.

John’s talk is one that may do just that for you as well.

It’s less than 17 minutes (which in the world of autism parenting is a LONG TIME) but I ask that you set aside the time today to watch this. It’s important. Honest.

And when you’re done, continue on reading below the video.

The entire discussion is so powerful and there really is a lot to take in but my focus, right now, is on one very important aspect of life; you have to ask yourself, “crap or cone?”

Essentially, you can focus on the crap and spend all your time thinking about it, talking about it, living in it… or you can focus on the cone and cherish it, enjoy it, share it with others.

What it comes down to is, both methods will get you results. But one might get you the results you want while the other will likely get you the results you want so desperately to avoid.

To put it another way, if you are always seeking the positives in everything… eventually that’s what you will find. But the same is true of the negatives.

And it’s hard to do. It’s so very hard to do when the deck seems stacked against you. When things just seem to keep going from bad to worse. That’s true of anyone and even more so when autism or other disorders or disabilities are involved.

But the same principle holds true. In fact, I’d argue that it’s even more true.

Autism can be hard… very very hard. I won’t deny that.

But that still doesn’t change the fact that what you decide to focus on will dictate how much enjoyment you have out of life. It will determine what your life will look like when you look back on it years from now.

Here’s a hint: when that day comes, when you think back on all of what your life once was, if you had focused on the crap, you’ll remember the diagnosis, the therapy, the schedules, the chaos, etc but if you focus on the cone, you’ll remember the child.

It’s easy to forget that it’s within our power to make that decision, especially when things seem so out of our control. But we do.

It’s a choice.

It’s your choice.

What will be your focus?

Crap or cone?

Comments { 3 }

Why I write about autism

By on September 19, 2012 in Autism

If you read my blog already, you may have noticed that I haven’t posted in a little while now. The blog is 2.5 years old now and I think I’ve hit a stage in this blog’s life where I start to question what it is that I’m doing with it, where I want it to go and most importantly, what exactly it is that I’m trying to say with it.

It’s caused me to ask myself one simple question: why do I write about autism?

In the beginning

When I started my blog, it was mostly just to write about my son and the experiences we had together. I made observations about certain things he’d do and I’d give examples of how my wife and I became aware that he had autism.

I didn’t write to make a statement or to impact other’s decisions or opinions. I didn’t write to inform anyone of anything either. I didn’t write because I felt I had to or because I felt anyone wanted me to.

It was a quiet but very satisfying time for my blog where I felt good about what I was doing. I still do, of course. But it was a different kind of good feeling. It was peaceful and gratifying.

As my blog grew, that all changed.

Over time

As the blog grew, like most bloggers, I found myself weighing in on community topics, giving my opinion on researchers that seem to only be trying to blame mothers for their child’s autism, on the crazy things that Jenny McCarthy was up to, the vaccine debate and so on.

I tried to balance a lot of that with emotional posts, praising people for being people. Whether they’re parents doing their best or autistics for doing their best, I tried my best to keep myself and my readers looking towards the positives.

But somewhere along the way, again, like most bloggers, I found myself being yelled at or dragged down by bickering and arguing, general negativity or any number of other methods.

Some people feel they’re forever the victim and no matter what I say to them, it’s an attempt at hurting them more. Some people feel that the universe is a very dark place and that I offend them by simply having a smile. Some people feel that their experiences outweigh my experiences and thus, I should not have my experiences at all.

These things sound absurd, but they really happen.

The law of averages says that, in the case of blogging, no matter how much you try to avoid negativity, the more readers you reach, the more likely you are to encounter it.

Eventually it becomes inevitable and should you be able to cope and continue to grow, you’ll encounter that negativity more and more, over and over. Should you reach a sizable enough audience, it becomes a daily occurrence.

And that can weigh heavily on your shoulders. No matter how strong you were in the beginning, it gets hard.

why write about autismWhy carry on?

So the question becomes, if you’ve gotten yourself to the point of the daily negativity, why carry on? Well, the law of averages may state that you’re going to be stuck with it but it also says that you’ll have thousands of positives for every negative. And having thousands of positives daily really is worth one negative, right?

For example, I often hear from people how my posts have helped them when they needed it most, or that my posts are what they look forward to reading every day, or that appreciate the time and energy I put into doing what they wish they could do themselves… I love to hear from people who say these things, not because they praise me, but because it means that I am making a difference. I am outweighing the negative with the positive. What I write matters.

Still though, why? Why do I write? It’s not for the praise. It’s not to know that what I say matters. It’s not really even to make a difference. It is nice to hear these things. And believe me when I say that I honestly and completely appreciate every single one of my readers. I always make every effort to reply to every email and tweet and message.

But I’ve come to realize that I don’t write for my readers. I don’t write for the media. I don’t write for the masses. I don’t even write for my son.

I write for me.

That sounds self centered. I realize that. But it’s true.

Well no. It used to be true.

And that’s the problem.

Figuring it out

I’ve been frustrated for quite some time but only in the last month or so have I really just put the whole thing on hold and really given it serious thought.

Had I run out of things to say? Was I no longer able to cope with the negativity?

In my frustration, others reached out to me and told me to write for the good of all autistics. Others told me to write for my son and even more so, for his future. Others told me that, again, my writings helped them and that it helps others and thus, I should continue doing so.

These are all beautiful reasons to get back to my keyboard and push forward, but I didn’t. These reasons should have been good enough. They should have been all the motivation I needed. But they weren’t.

So I went back to page 1 and started reading. And it occured to me that all those reasons, while great reasons, were not the reason.

I needed to know why the frustration started. I needed to know where I went off course. I needed to know what it was that I was missing.

And I found it, back in my old blog entries.

I need to write for me.

No one else.

Going forward

I can’t say it enough, that I value and appreciate my readers and hope I never stop hearing the positives. I could do with less negatives but that’s another story.

But as much as I love every single reader I have, I have to admit to myself and acknowledge to you right now that I didn’t write for my readers in the beginning and I won’t do it anymore.

Somewhere along the way I did though. As responses came in and I started hearing from my readers, my reasons for writing slowly changed and I didn’t even realize it.  I started writing just to help people, to get more of those responses and to make a bigger difference.

I don’t know why or how, but I believe, that’s when I lost my spark.

That’s when I started to get frustrated.

I hadn’t run out of things to say and it wasn’t that the negativity became too much for me… it just didn’t feel right anymore.

And that is what’s most important, I think.

You can write for your autistic child or to help others dealing with autism or to educate others about autism or to make a statement about autism or to make a change in the world for autism; these are great reasons to write. And if these are your reasons for writing, that’s wonderful. But it’s not my reason.

I’ve realized that those are things that I hope my writings will do. But it’s not why I write.

If I write for me, as me, and stay true to me, those things will happen on their own. At least, I hope they will. They did before.

To stay true and honest, I need to write because I want to write. Writing for any other reason compromises that.

I hope you understand. Thank you for reading.

Comments { 7 }

Autism is

By on August 8, 2012 in Autism

I would like to talk to you about autism. I know, we talk about autism a lot, you and I. But somehow things have gotten off track and I really think that I need to make something very clear. Not for for you or my neighbor or for other people but for me, right here, right now.

I have been living with autism my entire life and didn’t even know it. It wasn’t until I discovered that my son has autism that I truly came to grips with what it really is. And I’m not talking about what I’ve read in medical research studies or transcripts or expert opinions or even public opinions. What I mean is, I know what autism is, to me.

autism isThis may sound a little strange but in a very general sense, autism is everything and it is nothing too.

Autism is the way a person perceives the world around them. It is the way they take it in, interact with it, experience it, process it and live with it. It’s the filter with which all reality flows through before becoming our own reality. It shapes a person’s past as well as their future. With each step forward, all that is involved in that step flows through a vail of autism which invariably alters the course they take towards their next step. Each step being a direct result of the step before it, exponentially affecting further steps ahead. We become a product of our combined experiences, each of which, affected and altered, whether for better or worse, as an effect of autism.

At the same time, autism is nothing, neither tangible or quantitative in it’s existence any more than any other thought, memory, expression, synaptic response or neurological interpretation to stimuli that every living thing is privileged with in it’s existence. It’s a unique perception unlike any other making it exactly the same as any other. It’s a tasteless, touchless, odorless, inaudible and invisible anomaly that isn’t really there.

There’s more, and this is important. So hear me out.

Autism is not a fight between parents. Autism is not a battle with the school board. It’s not about who is functioning higher or lower than someone else or even about what “functioning” even means nor is it about who should and shouldn’t be cured.

Autism is not about what a person looks like and it’s most certainly not about tendencies that a person might have, homicidal or otherwise. It’s not about taxing the system or making life hard on a parent and it’s definitely not about organ transplant bureaucracy.

Autism is not politics. It’s not religion. It’s not about you or me and it’s certainly not about you versus me.

I am tired. I’m tired of all of this.

I’m tired of reading stories in the news about mothers killing their autistic children. I’m tired of people making horrendous and false claims in the name of autism. I’m tired of the fighting, I’m tired of the name calling and I’m tired of the people who can’t admit when they’re wrong. I’m tired of people that are judgmental and I’m tired of the people who think it’s funny. I’m tired of people telling me what I should and shouldn’t believe, what I should and shouldn’t say and what I should and shouldn’t think.

I’m really, just tired. Very tired.

So here it is, as simple as can be.

Autism is me. It’s my son. It’s the little girl who can’t speak but screams with every breath she takes. It’s the little boy that completely loses control one moment but creates his own computer operating system the next.

Autism is the man that needs a heart transplant to live. Autism is the young woman that goes to Washington to fight for people she doesn’t even know but loves.

Autism is the life taken far too early by the parent that didn’t know what else to do. Autism is the life that wandered away from safety, scared and unknowing of the dangers around them.

Autism is not a disease. Autism is not a battlefield. Autism is not an opinion.

Figure it out. Work it out.

Because autism is a lot of people.

Autism is the perception, the experiences and the reality that effects and shapes what is to become a person’s life and yet, it’s nothing too, for all the same reasons.

It’s people.

It’s lives.

Autism is.

Comments { 14 }

Placing a value on a life

By on August 7, 2012 in Autism

Bullies see some people as having less value than others.
Racists see some people as having less value than others.
Sexists see some people as having less value than others.
Doctors see some  people as having less value than others.

Yes. Doctors.

Early this year, a mom named Chrissy Rivera wrote a blog post called Brick Walls which chronicled her battles with the children’s hospital there. Her daughter Amelia was being denied a life saving kidney transplant on the grounds that she was “mentally retarded.”

The doctors, using what ever measuring stick they had at their disposal, decided that young Amelia’s quality and potential length of life was of lesser value than other people that could use a good kidney.

The special needs community all around the world talked about Amelia’s story, signed petitions and even bombarded the hospital with angry phone calls and emails.

It’s been a long 8 months since that blog post was written but Amelia will be receiving a brand new kidney from her mother.

The story should end there, in triumph but sadly, it does not.

Paul CorbyPaul Corby, a young man of 23 is going to die unless he has a heart transplant. He knows this because his father died at the age of 27 from the same condition.

But doctors are telling his mom, Karen Corby, they won’t do the surgery because he has autism.

Actually, they claim that they don’t know how the steroids will react in his system, how he’ll handle multiple procedures and that taking care of himself afterwards is complicated.

In other words… because he has autism.

Again, doctors are using an imaginary measuring stick to place a value on a human life and determining whether or not it’s worth even attempting to save.

Here’s the problem with placing a value on a human life… it lessens all of humanity.

It’s sad and pathetic enough when your random low life does it to further their own gains but when a well educated and respectable person that has sworn to practice medicine ethically and honestly, to save all lives, does it, it really speaks volumes to just how much of a greedy, barbaric and filthy society we’ve truly grown to become.

Dr. Suess said it best when he said “A person’s a person, no matter how small.”

It doesn’t matter if you see a child, a senior, a disabled person, man, woman or anything else that you perceive a person to be; a person’s a person.

What you should be seeing is a life. A human life.

There is no measuring stick and there is no value.

All life is priceless.

It can not be measured.

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Please sign Karen Corby’s petition to get her son the surgery he needs: http://www.change.org/petitions/help-my-autistic-son-get-a-life-saving-heart-transplant

 

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My advice for parents that have just received their child’s autism diagnosis

By on July 23, 2012 in Autism

One of the more common questions I get from people that give seminars, write journalism columns or otherwise somehow speak to many people at once is, “what advice would I give to parents that have just had their child diagnosed with autism?”

Here it is, in 4 parts.

1. Be selfless

When the doctor says those 3 scary little words “Autism Spectrum Disorder”, your heart sinks. No matter how positive you are, no matter how optimistic and no matter what great things you’ve heard about autism… it’s a heavy weight to bear.

In that instant, all of our hopes and dreams for our child are lost. We see a little human being with all of our visions of the future beyond their grasp. We see a child that will never be all of the things we thought they could be.

The thing is, those are our hopes. They are our dreams. They are our visions of the future. They are what we think that child should grow up to be. Us… us… US.

Letting go of that is hard. Some parents are never able to let that go.

But you have to realize, that’s your selfish side speaking. And I’m not saying that it’s not ok. It’s perfectly understandable and acceptable to be selfish where it pertains to your child. We all want what’s best for our children. We all want our children to reach for the stars and beyond.

But, you see, they will reach for the stars. It’ll just be in a different way.

They might not grow up to be like mom or dad and they might not even grow up to do all the other cool things you’ve imagined they could do but what they do decide to do, will be amazing.

They might not be your dreams or what you envisioned but, if you learn to let go of that and support your child in their dreams, you’ll find that nothing was ever truly lost.

You may be saying, “that’s all well and good for children that progress well and go to school and can manage on their own but my child will never have that”, it is not my intention to dismiss your burden. And all of the things I’m saying here will still apply. It will just be even harder still. And to you, I’d like to address this further in the next part…

2. Take stock in what you have

Sometimes I meet parents that are just so dark. They feel like they’ve lost everything and that their child was lost to them. They really believe that autism has stolen their child and ruined their future. And it hurts. It hurts me because no one should ever have to feel that way. And there’s nothing I can say or do that will help them.

But maybe, if a parent who is on the path towards feeling that way can be reached out too, perhaps those feelings can be prevented or avoided.

I’d like to tell you about my visits to Sick Kids Hospital with my son. One time for surgery and one time for allergy testing.

Walking through a place like that, you see children without hair and looking very pale and weak. You see children missing limbs or even an eye. You see children that are unable to see, hear and even those that are unable to move.

The hardest, I think, is seeing parents that are holding each other, crying so hard that in one moment are crying out louder than you’ve ever heard and in the next moment, crying so hard that they can’t even make a sound.

They moved into the hospital to be with their child in those final months, sometimes years. They know real loss. They’ve lost their house and jobs. They’ve lost the lives they once knew because for the time they’ve been in there, life has moved on without them.

But their child was worth it. For as short as their life was, it was a life. A beautiful and wonderful life and that life deserved to be loved. That child struggled for every day that they could.

For those parents, it was hard. Very hard. Harder than I could ever imagine it being and will probably, hopefully, never truly know.

But being there was worth it.

The reason I’m saying this is that, whether your child has autism or not, your child is right there, in front of you and your child needs you to be there with them.

Don’t be off fighting your battles or mourning your losses. Instead, move in to their room and be there with them.

Yes, you could take away from this story that things could always be worse or that they could always be better but that’s not what I’m trying to tell you. Instead, do as those parents did, do as they wish they could continue doing right now.

Take stock in what you have and live it. Your child has autism. It’s not a death sentence, it’s not an ending. Their life will be different than what you expected and it might even get really hard, but your child is right there wanting you to be a part of it.

3. Support is where you give it

It might not seem like it at first, when you know so little about autism or the struggles that it will bring, but your experiences are already and will prove to be quite valuable.

Every day, people are sharing their stories online and in support groups and one day, if you’re willing, that could be you.

Right now, someone is wanting to hear about the process you had to go through to get the diagnosis complete. Someone is wanting to hear about how you are feeling right now. Right now, someone is wanting to hear that they’re simply not alone.

If you are willing to reach out, even just a little bit, people just like you will be wanting to reach back. But if you close yourself off and bury yourself in that feeling of being so very alone, which we all feel (it’s not just you), you’ll miss all of those shared stories and all of those shared experiences. That one smiling face or reassuring word that you needed at just the right time will be missed unless you are willing to first step out and offer a warm smile too.

Autism is so very different from person to person, family to family, life to life but at the same time, we all share something so common and so fundamental that we already have this bond that we only need build stronger… and that’s our children. Our children need us.

What more reason do we need to support each other?

Unconditional love4. Love unconditionally

Whether your child has autism or not, can remember Pi to a thousand places or bangs their head against the wall, will go on to big and successful things or live out their days in a care facility…. no matter what, you must love your child unconditionally.

Many people say it as just a figure of speech or, while understanding it’s meaning, don’t really take into account the real scale of it.

Loving unconditionally does not mean that you love your child despite autism. Loving unconditionally means that you love your child with autism.

That no matter what your child does have, doesn’t have, does do, doesn’t do, will become, won’t become, who they were, who they were not, none of it matters, not one piece of any of it will ever take away from who your child is or the love you have for them.

You don’t get to love your child except for the part of them you don’t like. That’s not how “unconditionally” works.

When you fall in love with your true love, your soul mate, your bride or groom to be for the rest of your life, you accept them at their best and their worst, they’re best features and even their faults. You love them for who they are and wouldn’t change a thing.

The same thing applies, even more so, for your child.

Love your child for who they are, not for who they are even though you wish they could have been someone else, or someone more. Love your child for what they can do, right now, not for what they can do even though you wish they could do more.

Love your child. Period. Just love your child. Your child is perfect because your child is your child.

One day, maybe not today and maybe not tomorrow but one day, you’ll look back and realize just how much of a difference that really makes. It may seem like such a trivial thing at the time but it’s not.

One day, your child will look back and will know that they were never meant to feel like less than they should be. They will never feel like a disappointment in your eyes. Not even a part of them. They will never feel like they were the cause for your lost hopes and dreams.

What you do today, by truly loving unconditionally, will be your autistic child’s source of strength in years to come.

Do you see how important that is? Do you see how powerful that is?

What I’m saying is, without true, real unconditional love, one day, your child will believe less in themselves than they should, than they really need to, because they’ll look back on all the times you were disappointed in how they were less than they should be, less than you wanted them to be. And they’ll doubt themselves. They’ll feel what you felt.

And it won’t be the autism that holds them back, it will be because of the flaws and faults you saw in them that whole time. They’ll believe it because you believed it and it will stop them from achieving their true potential.

I know, if your child was just diagnosed, that’s a lot to take in and it’s even harder to do. Chances are it will take time and even though it seems like a roller coaster of a ride, you do have time.

Just keep it in mind. Loving your child, unconditionally, truly unconditionally, could be what makes the biggest difference in their life. Not the autism or any other struggles that autism can bring.

Your love. It’s just that powerful.

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