Shadows

An old friend posted on a link that I shared over Facebook last night. The link spoke of Synesthesia, a phenomenon that I have been closely observing with Sammie since he was an infant. Synesthetes have a fascinating sensory perception condition in which the stimulation of one sense triggers unconscious and involuntary reactions in the other sense. So some synesthetes "hear" or "taste" colour, "see" music, and "taste" light.  Recent studies indicate that Autistics are 30% more likely to experience synesthesia than neurotypical people, and it is definitely something I have picked up on with Sammie since, as a very young child, he appeared to try to "touch" light and "sounds" and still covers his eyes and ears when there is a smell in the room he doesn't like.

My friend commented on his own experiences of heightened/stimulated perceptions, and I found myself so curious to ask him more about it. I was just about to send him a private message, when I stopped, fingers still set to type.

Where does one even begin?

You see, where once upon a time we were actually quite close, my friend and I haven't seen each other in around 8 years.  Almost 3000 days....

I've followed him- from the comfortable distance of Facebook- as he has explored the world, fallen in love, become a father....

I've followed and read with intent curiosity his shares about politics, food, and life in general...

I've laughed at some of the comments which remind me of why we were friends in the first place...

I've smiled, sensing very much that he is happy and exactly where the Universe wants him to be...

But it has been years since I have said 'hello'. So long, actually, that I'm not even sure where to start.

You see, I'm not entirely sure the person he was once friends with still exists.

While I do know that most people grow, change and evolve over the course of their young adult lives, I'm not entirely convinced that most do it with such a strong-handed division between who they were (and thought they would be) and who they are (and have become).

I can trace back, to the day, the moment that my life got split down the middle: Zita of Then Vs. Zita of Now.

February 5th, 2010. I was 19 weeks pregnant with Sammie and received a call at work from my doctors office. He was just about to leave for Mexico but "needed to talk to me before he left" because he didn't want another doctor to have to give me the news.  The ultrasound had come back with signs of severe abnormalities. The child that we had coveted for so long, that we had risk so much for...the baby was sick. 

The whole conversation seemed to take place in a blur, but I remember every word. 

"You're going to have to decide what you want to do. You only have a few weeks if you want to terminate. We can wait and see what happens, but that will make it harder for you to act if you decide that you don't want to go through with this. What you need to know is this: the baby will probably not survive the pregnancy, and if it does, it will likely have a limited quality of life. And you are also at risk- this could be very dangerous for you."

My heart stopped beating. And for that moment in time, all I could hear was the blood pulsing through my head....and something faint behind it. Another heart maybe? My baby's heart. 

There was nothing to think about, nothing to consider. 

I knew that I would risk my life for this baby. That I was prepared to die so that he might live. 

I went home and talked to Jason, already knowing he would agree. We would fight for our child. We were his parents. It was our job to keep him safe. 

We named him that night, knowing that we would want a name in case we had to bury him prematurely, inspired by the book of Samuel, verse 27: "For this boy I prayed, and the Lord has given me my petition which I asked of him."

On that cold day, almost four years ago, something shifted inside me and I would never quite be the same again. I realized, in a real and tangible way, that there was nothing- NOTHING- I was not prepared to do for my child, and with that realization, I walked away from the selfish young adult I had been and entered a whole new world of understanding that self-actualization only comes when the self is no longer the principle focus.

Prior to that day, I had already been a friend, sister, daughter and wife. I had already loved people, many unconditionally, and had fought battles to protect them and our relationship.

But there is something slightly different between saying that you are prepared to die for someone, and actually signing a document stating that you would like another person to be saved before you are.

On that day, I knew that I would never be the same. That every hope and every dream I had would be placed on hold- possibly indefinitely- while we awaited the outcome of the pregnancy and birth.

The rest is history.

Since then, one day at a time, the person that I used to be slowly became replaced with the person I have become.

My perfect, immaculate parlour with baby blue furniture? Covered in raspberry finger prints.

My dreams of becoming a corporate lawyer? Replaced by working from home, usually during nap time.

My business suits and designer glasses? Replaced by yoga pants to make floor time more accessible.

My love of food, and obsession with restaurants? Replaced by a mostly pesticide-free, dye free, corn/soy/msg/gluten-free, casein/dairy-limited, modified Paleolithic Diet. (Yum!)

My ambitions for wealth? Replaced by hope for government supports for families with disabilities, and a sincere understanding of just how good we've "got it".

My son's Registered Education Savings Plan? Replaced by a Registered Disabilities Saving Plan.

My vision of a wet-bar in the basement? Transformed into a Snoezelen Room and Gross Motor therapy space.

My idea of a perfect Saturday night dinner? One where Sammie actually eats what's on his plate.

My dream Christmas gift? A maid service. Seriously. How awesome would that be?

My Friday mornings? Meetings and training seminars with Speech Therapists, Occupational Therapists,  Developmental Psychologists, and teachers.

My super huge, pillow top mattress? Not so huge now that I have another baby snuggled up beside me.

My days of wild-child style partying until 5 am? Ha ha. Last night, I was breastfeeding at 5 am. :P

My life? Absolutely perfect, and I wouldn't change a thing. 

But it isn't where I thought I would be, and I doubt it's where others would have predicted me to be either. Sometimes I look back and am amazed by just how far off my original path life has taken me.

And so, in moments like last night, I think back to the those friendships of the past and wonder- would they- could they- have changed with me? What would we say now if we were face to face? Would we have anything to talk about? Or would we have so much more to say now than we did before?

There are a handful of people who walked the last five years by our side. We've lost many friends, mostly due to the significant changes I have described above. Many people don't understand. Many people are scared of the life we are living. Special needs parenting is not for the faint of heart.  It is full-on, 24/7, intensive and unabashed adoration of another human being (and in our case two) with almost no respite and minimal support.

There is very little room for "you" in this world.

And the "you" that there is room for is a very different person than the one you knew before.

I didn't grow, or evolve,  or develop.

I changed. Black and white, from one day to the next, overnight.

Pre-Sam Zita is a distant memory. All that is left are the shadows of the life I thought I was meant for.

There is no regret or sadness, though there is sometimes a tugging nostalgia.

But I'll be honest with you, I like this "me" a lot more than I liked myself back then.

And I have a suspicion that, if ever we were to meet again, my friend would too.

Maybe that's why we were friends in the first place.

Out with the old

I have been cleaning out my storage room for 13 hours, practically straight. I am seeing double, my legs are throbbing and I can't feel my toes.

All of that to say: no post tonight.  :(

Cop Out Post

I am copping out tonight. I am supposed to be writing about being a team player...and I will. Tomorrow.
For tonight, let me sat this: Being a team player sometimes means knowing when to focus your energy on your team mates so that you all have something worth fighting for tomorrow. So tonight, I'm snuggling with the hubby, eating nachos and watching Survivor. The blog can wait. ;)

#33: Lessons from the playground. (Another spin on getting along).

(Please read the background to this post here: http://www.autismorsomethinglikeit.blogspot.ca/2013/11/writers-block-33-7-17-47.html)

Topic # 33: Lessons from the playground. Another spin on getting along.

He stares out the window with a depth and soulfulness that makes me wonder if he is actually taking in every shade of refracted light stemming from the droplets of condensation on the window. 

He is so still and so quiet. And yet so present and aware. 

We pull over to the side of the road, where the green grass exceeds the height of the cement marker used to instruct me on where to position my car. I pull him out. He looks down at the ground. I can almost hear his thoughts "Mom parked on the yellow line again. Doesn't she know she is supposed to park between the lines, not on them?"

From the distance, I hear the voices. Laughter, squeals, and screeches of delight. Someone shouts "No Fair!"  I hear an adult voice loudly drowning out the other sounds: "Tommy! Leave your brother alone!"

He doesn't raise his head, but cocks his ear as if to acknowledge that- yes- he hears them too. More than that, he hears the sound of the wind floating across the wings of the birds that have taken flight overhead.  He hears the buzzing of the bumblebee as it hover over its conquest, embracing into its bosom the sweet nectar of life. He hears the rabbit, perched merrily on top of a mound of dirt, gleefully gnawing on a blade of grass

"But- yes, mom- I also hear the voices. I know that they are there." 

I look at him, waiting for a cue. He does not ask to go back into the car. I can press him further.

"Sammie Baby, it's a beautiful day! We are at the park. Would you like to play here for a little while? I can push you on the swings if you'd like."

I pause, waiting for an answer that will not escape his lips. I watch his face and body closely, waiting for the slightest movement to betray his heart's desires. 

It takes him a moment to lift his eyes and take in his surroundings. 

Slowly, he looks around, examining the environment and assessing the situation. 

He glances at my eyes. 

Briefly, then its gone. 

That means yes.   

He lets me take his hand and smiles. He knows I've understood him. He likes that we just "get each other". I wonder if he knows how hard I work at it...

The park is overflowing with joyful faces, young and old. There are blankets laid out for picnics, and shoes casually discarded in the sand. The older boys and girls are taking turns leaping off the top of the slide, as their parents pretend not to notice and attempt to conceal their anxiety. 

He is thrilled. He loves people and activity. He loves to watch them play. He wants to play too. 

He doesn't know that he doesn't know how...

He races off, faster than I expected. I run after him, carefully craddling the baby's head so that she doesn't get hurt as I bound as quickly as I can after his nimble feet. 

He stops in front of a group of kids, probably two or three years older than he is. 

They stare at him. 

He is different. 

He stares at them. 

They are different. 

He doesn't care. He smiles. He laughs. He hums. He jumps. He flaps.

When we don't have any words, we have to show joy with our body. 

The children continue to stare. 

"What is he doing" they ask me. 

"He is saying Hello" I reply.

And then he starts to spin. 

I hold my breath. I am being watched. I know that my cover is blown. We've been exposed. The panic rises and, all of a sudden, I feel like I am fourteen years old again, terrified of being picked last for basketball. 

"Leave that little boy alone" A mom calls out, from a safe vantage point in the shade. 

And the world stops. 

...

He spins

...

I am frozen

...

He spins

...

They are staring

...

He spins. 

...

"Ha ha! He's getting so dizzy! I want to try! I can spin really fast too!!! Watch me!!!"

...

What?

...

And now there are two. And soon three. And then four. And they tumble to the ground in a heap of giggles, their heads reeling from the sensory overload. 

"Wow. He's a really a good spinner. He doesn't even fall down. Come on, let's go down the slide."

He stops, and watches them go. He is smiling when he looks up at me. He wants to go on the swings. It is must quieter there- no one else is around. 

We stay, swinging away, just the three of us for another hour and I watch as, one by one, the group starts to dwindle down to nothing. It must be dinner time. 

He takes my hand, and we walk back to the car together. And as I lift him up into his seat, I pull him close for a hug and whisper "Sammie Baby, it sure is a beautiful day."

Writer's Block: #33, #7, #17, #47.

I have writer's block. This always happens to me at around days 18-21 of my month long challenges. I sit, staring at my computer, with no idea what to write.

I took on this project, not to just write gibberish, but to actually force myself to connect with myself- mind and spirit, working together to sort out some of the information overload I've been facing lately. So I'm not interested in doing "just to write" posts. I want to write something meaningful everyday- or at least meaningful to me.

So, I tossed it out to the interwebz: Give me a number! (between 1 and 125)

And I got 33. And then 7. And then 17. And then 47. (lots of 7s there. Interesting).

So, for the next four days, I will use this list of 125 Blog Topics to guide my writing.

Wish me luck!

This is how we build an identity

If you had asked me two weeks ago "What is autism?", I doubt I could have put together much more than a pseudo-medical breakdown of its symptomology. It just wasn't a question I had asked myself very often- it was something I'd always accepted as "It just is."

And then this happened.

And then this.

So I wrote this.

And I read this.

And this.

And this.

And so many more stories that moved me. 

And, much to my surprise, a new part of me was born into a community that I never knew existed. Or rather, I knew that it was there- I just didn't know that I belonged there too.

Over the course of the day, my heart swelled with joy, my eyes filled with tears, my soul soared to the clouds.

These are my people.

This is my home.

Those with autism. Those who love them. Those who teach them. Those who nurture them. Those who advocate for them, and for themselves. Those who see a brighter future and a world full of acceptance and diversity.

They are me. And I am them. 

Today, I discovered a new part of my identity.

I suppose you never know who you are until someone attempts to mischaracterize you.

I was put here, in this time and in this place and I can choose how my life is spent.

I choose to spread love.

I choose to see hope.

I define myself by what can be.

I choose to do more than just "survive".

A huge thank you to the creators of the This Is Autism flashblog for bringing us together as one united voice for change. And a sly thank you to Suzanne Wright, of Autism Speaks, without whom none of this would have been possible (or necessary). 

On Neurodiversity: A poem

You say you oppose
Neurodiversity
As if- somehow-
The billions of unique personalities
On this planet
Are housed in our ankles and elbows
And not in
Our minds

Our brains flash at different intervals
Pulsing with different electricity
Who are you to say your wiring
Is superior to mine

Or to my son's?

Do only brains that look like yours
Enjoy a quality of life?
How do you begin to measure
Where the animal ends and the person begins?

You say I support
Neurodiversity
I ask you
As opposed to what?