Friday, January 28, 2011

I'm not sure I like photos...

We've got our house on the market right now. We are completely crazy for doing it, but we're doing it now, so we just have to suck up the crazy and go with it.

In the process of turning our dog hair gallery into a showable house, I've found a bunch of old photographs. You know those floppy papery things with pictures of things on them. I had to google it, to be sure what they were.

Billy was born in 2003, and for the first five months of his life, we took pictures with old fashioned film cameras and sent them off to be developed. He'll surely laugh at us when we tell him that in a couple of years time. Since we went digital, we've gone completely nuts, and at last count my iPhoto had close to 10 000 photos in it. For the first few months, though, we chose our kodak moments carefully. They were expensive.

It kills me to look at those photos for a couple of reasons.

One reason, I've spoken about before. They mock me with their wide eyed lack of autism knowledge. Billy didn't know. We didn't know. Nobody we knew, knew. We were just drinking in the wide eyes and vast smoochy cheeks of the wonderous being we had created. And I know everyone says it about their own child, but boy was he cute. He looked like a cabbage patch kid. But actually cute. And we hadn't signed his bottom. Yet.

The second reason is even more insidious, though. It's because he's perfect. These are photos from before we knew to be worried about him staring intently at leaves blowing in the wind. In every single baby photo before twelve months old, Billy stared straight into the camera. When he was old enough, he smiled. Now we take literally 30 shots, so two will have managed to catch those beautiful eyes in full contact. His little baby arms are relaxed, rarely caught in the spasm-y jerks we see now.

In those photos, we are new parents full of joy and hope and pretend bravado about the amazing journey we'd just started.

Now, we're different too.

Sometime soon, I'll be able to talk about what's been going on in our lives. For now, all I can say is that our bravado has been eroded, our hope is clouded and our joy is now for us alone.

I never really thought about how I would appear as a parent. I just thought I'd take each day as it comes and do what came naturally.

Then, along came autism. Maybe because of who were were, maybe because of what we did or maybe because of a combination of the two... along came autism. And along with autism came the stares and the judgement and the people standing a respectful three feet away from us just incase they catch it from our spit. Along came the need for us to skill up fast in fields we didn't even know existed - we changed the way we talked, the way we thought, the way we drove, the way we cooked, the way we cleaned, the way we holidayed, listened to music, spent our leisure time... you name it, we changed it. We continue to change. Every single day.

Why? We change because we want Billy to live the best life possible. We've learned the way to do that is to keep him feeling safe and secure. When he is safe, he learns. The world is not really built to keep him on an even keel - it's noisy and fast and verbal and smelly. So we work like ducks to keep the balance - flapping our feet like crazy, while attempting to maintain some kind of decorum up top.

This does not make the autism go away, it honours the autism. It helps translate the world into a form he can understand and accept. And so, it helps him be a part of the world. He learns things that would otherwise wash past him in a blur of sturm and drang. We do not believe in 'chucking him in at the deep end', we do not think he 'has to learn sometime'. We think he will learn in his own time.

As with everyone else on the planet, the more he learns, the more he can learn. But that doesn't subsume the principal impairment. He is differently wired, unique, autistic. And unless the deep brain stimulation thing John Elder Robison is doing, or stem cell transplants happen or some rabbit placenta miracle cure comes our way... he will always be autistic.

We're fine with that. We're not at peace with it, but we're accepting of it. We're living it. It just is.

What we do not need is for our lives or his life to be interpreted by people who choose to avoid the change and understanding we have lived through. We do not need pity. We need respect.

To anyone who is getting ready to launch themselves into the parenting adventure, I would say, open your eyes, open your hearts and jump on the ride. You do not know what you are getting into. You do not know what you're going to get, or how you are going to get it. You are going to need every last bit of love you feel for your partner and every bit of support you can get from your family. It's not going to be easy, it is going to test every last skill you can dredge up from every learning experience you've ever had. But it is going to be amazing.

Even if you discover your child has a disability. Like we did.

If you do end up living a life like ours, remember those times in your life when you thought change was necessary. Real, cellular level change... when you could see that they way things were working was going to end in disaster... when you felt like screaming out to stop someone from really seriously hurting themselves.

That's the mental state you will come to accept as normal. You may as well get used to it early. Make friends with it. Be one with it. Have a t-shirt made.

When pressure comes from the outside, you will need to remember what defines you. Not stasis - not the way it always happens. What will define you is the need for flexibility, empathy, mind-reading and change. That and pure, joyful love.

Also, stupid decisions like selling your house. They may come to define you too.

Though from where I'm standing right now, I'd avoid that, along with getting a long haired and very large dog.


Di said...

Phew Valerie, your writing is so descriptive - I was pulled right into your story and was a little disappointed that it ended!! It also dug down deep into my heart, that little corner that I don't like to visit very often :(
Go well and good luck with the house thing!

Anonymous said...

I loved the opening of this post, it was so joyous at the innocence of the gift that you were given.
Good luck selling the house. I think I took my share of dog-hair with me - it wasn't all trains and tracks in that bag and tub you know!

Amanda Simpson said...

I am new to your blog and loved reading it. You write so beautifully with so much love and emotion, I am in awe. Thank you for sharing so honestly and letting me be part of it. You are an amazing and beautiful person, just like Billy. Love, Amanda

Mich9 said...

I always love to read your blog. Each entry is really good. From the heart and real.

But this one. This is a REALLY good one. It's honest and raw. It's inspiring and has pain woven between the lines. It touched many nerves.

Quite simply, Valerie, you're brilliant. :)

Mama Deb said...

I've been lax at visiting my blogs lately, but got worried when I saw mention of you going through some tough stuff on the fb board. I wanted to let you know that I'm thinking of you and virtually holding your hand from all the way over here in Cal-eye-for-nye-a! Hang tough, sister :)