Tag Archives | life

Crap or Cone

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?

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Autism is

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.

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Placing a value on a life

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.


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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The winner for the Determination award goes to…

Cameron Determination


Every month, as part of an effort to raise (or keep up) school spirits, the teachers pick a student from each class/grade who demonstrates the most of that month’s selected character trait to win an award.

Sometimes it’s responsibility, leadership… it’s different each month. This month, it’s determination.

And Cameron deserves this one.

From early on, knowing full well that Cameron’s struggles will likely be much greater than the average person’s, I wanted to instill in him some confidence that would still be there later in life because it’s always been a part of him.

So right from the time when he was capable of answering, I’d ask him “Cameron, what do you do when you fall down?” and he’d answer “You get back up.”

That was when he was 3. That’s still his answer today. He’s almost 7.

The reason that I picked this one thing, this one characteristic for him to hold above all else is that, through determination, he can over come any odds to achieve any other characteristic he may need.

If he wishes to be responsible, his determination can help him achieve that. If he wishes to be a great leader, his determination can help him achieve that.

Determination is the key to not just overcoming his own weaknesses and struggles but it’s also the key to achieving more than those around him.

He’ll be in a world with people that do not have autism nor any other disability and while they may accept him and may work with him… it’s his determination that will allow him to progress beyond that… beyond them… to strive harder than they ever will and to surpass them.

It doesn’t matter what he decides to do with his life… so long as he believes in himself and stays determined… he can do anything.

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

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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