Thursday, August 4, 2011

Memories... repeated over and over again...

Sung in my best Barbra Streisand voice (which, unsurprisingly sounds nothing like Barbra and everything like Rebecca Black).

We've been going through a bunch of home movies recently. Billy discovered the hard drive on our DVD player, which is where we stored said movies until Apple Corp entered our lives and shut down our ability to choose. If you are a fellow autism parent, you will probably understand how well documented Billy's life is... we've got feeding videos and social experiments and shaving cream and rice play and video modelling experiment after video modelling experiment. Add that the the endless visits to the zoos of Australia, and you have many gigabytes of Billy.

And he LOVES every last frame.

For Billy, they are fodder for scripting, they are proof that his memories are real, they are comfort. For us, they are proof of how far this boy has come.

I wanted to draw a line in our funny looking autistic sandbox with this post. I hope it gives hope to families who are just entering the autism game, or at least calms some frayed fears, or makes someone smile.

I've been watching a lot of two-three year old Billy in the last few days. I've been reminded of how our lives were ruled by his challenges. We were able to manage one trip out of the house every day. Any more than that, and Billy was a sad mess. Some days we didn't make it out at all.

Most of our trips were to zoos, because that was what made Billy happy. Having said that, if the zoo was busy, or had a school group in it, or had construction going on, or (god forbid) had a screaming baby in it... the trip was over and the day was done. We went back into our cave, which mostly involved Billy shut down to sleep and me cuddling him on the couch and cursing at the neighbours when they let their kids scream endlessly in their backyard.

His tiny eyes are often red rimmed in our home videos. They have huge dark circles under them, often. His hands were never far from his ears. His voice is charmingly babyish, the delay in his language just making him look cuter (to us, of course. If you look closely at the background, you can see people looking quizzically at the tall three year old with the one year old's language. He echoes almost everything we say, he falls into repetitive question/answer forms, he struggles to sustain any kind of conversation, his vocal tone is cute as a quince but just slightly off in an unexplainable way. You can hear the strain in our enthusiastic voices as we try to drag him out of his defence position... you can hear the wanting in our voices, the hope that this veil over our treasured boy would just bugger off and leave us to enjoy our lives together.

Those really were the dark days. In memory they seem dark. On video, they seem dark. Hopeful, but dark.

Today, we are in such a different place.

The autism is still there, as there as its ever been. His health is still compromised, and the health threats come in waves. What has changed is our perspective. Both the grown ups and Billy... we've changed as a family.

We are happier, more accepting, more courageous. We have the ability to take on more, to navigate more swiftly, to anticipate, avoid, alleviate a lot. We can take chances and be confident in our ability to get out of  whatever happens in one piece.

I've been trying to work out why we've changed (or what changed within us). To be honest, I am not sure, but I suspect it's just time, experience and being hit repeatedly over the head with the wet fish of autism.

Along with a lot of positive experiences, we've come across way too much ignorance, intolerance and insensitivity. In big ways and in little ways. In schools and hospitals and shops and at family dinners. We've been insulted, ignored, abused and maligned. We've gone from thinking the problem is autism to realising the problem exists well outside of Billy and any condition he might have.

Even in situations that have been welcoming, there have been compromises. Even in places where he is comfortable, there are qualifications. The world is not set up for difference, and somehow people have got the idea that it's OK to denigrate someone (or their family) because they are different.

In the beginning, we were trying to avoid being the different ones. Now, we accept who we are. Different has become kind of normal.

Today, Billy saw a new doctor - a cardiologist. He had a cardiac ultrasound, and he did it with no preparation. Then we went to the vet (full of barky dog potential). Then we went to a photo shop and had passport photos taken. Then we had cake, and Billy got to have a surprise visit to Daddy at work while I went to a meeting. Then we went home, picked up the dog and went to the local dog park.

Billy did it all, in his own way, in his own style, with a lot of arm flapping, skipping and grimacing and a few ear covering tears. He said please and thank you when it was appropriate, he ate, he used unfamiliar toilets (a feat in itself in these days of explosive poo... a whole other story), he was awesome. He's come a long, long way.

We've come a long way. They're not dark days anymore. They're just days.

At the end of his appointment today, the doctor said 'You were really well behaved, Billy.Thanks' And Billy replied, 'Yes, I was.You're welcome. ' The doctor looked at me and said, 'We should all take our accolades like that.'

He's right. Yet again, Billy shows us a better way of being.

And if you will excuse me, I'm off to make some more videos. Billy's going to need something to watch in four years or so.

1 comment:

Lisa said...

Val, you're making me feel guilty. I've been meaning to write an 'OMG he's 18' reflective post since... the boy turned 18 in May. Just got to find the right reflective moment, and one where I don't have children reading over my shoulder as I type.

I have to talk about friends, and parties, and girlfriends, and bars, and total lack of ability to self-start.

It's a work in progress, but then again, isn't everyone's life?