Thursday, September 12, 2013

DAY 23: On Staring

It's ok if you stare.

Truly, it is.

I'm not being fascetious or defensive or sarcastic.

I will say it again, even more clearly:

It is ok with me if you stare at my son and I because you noticed he is different.

We are trained from birth to recognize the abnormalities in life. As young children, we could all hum along to "One of these things is not like the other", and took great pleasure in solving the puzzle. As we grow, we are encouraged to be unique, yes, but only in ways that are socially acceptable. We are told to stand out, to be leaders- but we also witness first hand how difficult the lives of non-conformists can be.

Trust me, I know that different "sticks out".  And staring is a normal reaction.

Honestly, I actually wonder if it isn't preferable to pretending not to see, scuttling off as if we are somehow like the insects on the ground, too unpleasant to acknowledge.

So yes, you can look at us. You can watch us. You can notice that we are different.

But if you really want to make my day, you'll take it one step further.

Ask the question.

It's on your mind. On the tip of your tongue. Just ask it already...

Is your son "ok"?

(Which, in reality, is the older, more mature version of "What's wrong with your kid")

Or, if you are feeling especially brave, "Does your son have special needs?"

Ask the question- and give me a chance to respond- cause I have a boatload of awesome, informed, education-focused answers.  I can practically quote verbatim half a dozen sources explain neuro-diversity. I am a walking FAQ on Autism Spectrum Disorder and a host of other PDD, Sensory and Behavioural conditions.

Please, let me share this with you.

You see, three years ago, I was just like you.  My knowledge of Autism was what I picked up watching Rainman or Oprah. I was scared of this condition that I heard you could get from a vaccine. I was terrified of having children who didn't love me, who were cold, unfeeling, disconnected.

I had a genuine phobia of Autism.

And I knew nothing about it.

I remember seeing it once- about 10 years ago...or at least I *think* I saw it.

And boy, did I ever stare.

I wish I had the courage back then to ask- not assume, but sincerely ask- to have it explained to me. I wish I had been able to say "Can you tell me about his disability? I really want to learn and understand.  Where can I learn more?"

But instead, I stared.

It may have been "awful" of me, I know. But not all stares are full of judgment. Some stares are inquisitive, desperate to understand.

And what I saw while I stared stuck with me for the past ten years...

A mother, adoringly stroking the hair of her grown son, whispering soft and reassuring things into his ears.

A son, whose body had betrayed him, clasping her hand in his, desperately trying to regain control.

A voice, wordless, but full of intention and meaning.

A human connection.

And, just like that, a flicker of light struck me in my darkest soul...there was love here. Real, reciprocal love.

And on a very basic level, I began to understand a fundamental truth: Whatever I "thought" I knew about Autism was wrong.

Of course, I couldn't have known then that I would one day stand in that mother's shoes.

But I do remember standing in yours.

And only through sharing knowledge and education can we begin to address the massive social misunderstandings that surround this condition.

So please, if you can be brave, ask me the question. I promise you, I will answer with as much honesty and information as I can.

But, if that's too much for me to ask of you, then please just look at me in the eyes.

Please stare.

If you don't look, then you can pretend we aren't there.

But we are.

So look.

And if you do look- with an open heart and an open mind- you will see a love story of a mom and her son, just trying to put the pieces of the puzzle together.

You will see affection.

You will see connection.

You will see love.

You will see the true face of autism.

1 comment:

  1. I had a childhood friend that I adored. He was different than the other kids but I didn't care we just played and were best friends. Years later when we moved away, grew up and lost touch. I saw him again at a function and he was obviously medicated. I tried to ask his mom what his diagnosis was so I could better understand but she wouldn't say, as if it was shameful. I think he may be schizophrenic but she seemed ashamed and wouldn't discuss it. All I wanted was to know so I could understand him better. It always struck me as sad that she couldn't just talk about it. It is what it is and its ok. I hope now a days people can get more enlightened about any ailments and especially autism as it getting very common.

    I like your perspective, your son sounds like a wonderful little dood and the more others can understand what makes him tick all the better. It is great that you recognize people may just have questions and not be at all judgmental as you yourself were in the past : )