Archive | August, 2012

Two of a Kind

By on August 15, 2012 in Autism

 

To my 13-year-old Alex I give the command typically heard on a school morning: “Put on pants, socks and shoes.”

 

There’s this thing about the socks. Most people wear a pair that resemble each other. Alex doesn’t.

 

I take inventory of his sock drawer. Balled up: the green and dark-blue “Sunday 7” socks that my wife Jill bought at H&M. Separate: A pale green and a pale blue, each with white stripes. The black and orange I would wear if they were big enough. The “Monday 7.” The blue and black “Wednesday” (how come no number?). The “Tuesday 2,” the brown one with the white stripes. Why is there always this yellow and black “Saturday” without a partner?

 

I collect a pile on my knee of those 10 socks whose partners have been plucked, alone and ragged out, by an autistic young man.

 

Jesus, the other blue and black “Wednesday” in the bottom of the drawer. I ball them up. I find the dark blue ones with the light-blue stripes in the dark confusion of the opposite ends of the drawer, Lovers lost in a way to shatter a heart. I ball them up feeling a little like God. And there’s the light blue one with white stripes! I ball it up with its partner – not that Alex will keep it that way on the school morning of school mornings.

 

I’ve given up trying to match them when doing laundry. I drape the socks over the bars of the laundry cart one by one, each seeming to hope for their old partner or, as we all do in our hearts, hoping for a partner new and thrilling. Why is two of a kind beyond Alex?

 

He’s had clothing obsessions. Once upon a time it was black T shirts. His current one is khaki pants. Next? Some of the garments bear the fading STIMPSON of summer camps over the past few years.

 

How does Alex look to the world in mismatched socks and the old, short Kmart khakis, the only ones he’ll wear until they rag out? Does the world understand that? Does the world understand how he looks, and what do they think of me as I begin to rag out myself?

 

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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.

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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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