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.

Thursday, January 20, 2011

Our trusty assistant...

Today, I spent the day away from Billy, which is odd enough in itself.

I spent the day with number two son, Scruffy, shooting a dog food commercial. And, for the record, he rocked. There's something genuinely spooky about this dog. He seems to be able to understand human talk,  to be able to sift through people's crap and pick the best of it, and to be an awesome judge of character.

I could seriously learn a lot from him.

The interesting thing about today was that people were keen to talk about Scruffy. Lots of the other dogs were show dogs, and show dogs are not the most affable of dogs. They've got their eyes on the prize. Scruffy, on the other hand, is the definition of affable and his prize is pats and other forms of affection.

So as he introduced himself to anyone and everyone, the two legged folk would ask me questions about why my dog was so deeply calm and lovely. And I could tell them a great story.

I told them that Scruffy was the reason why my son was able to talk to kids. That before we got Scruffy, Billy hung around the edges of his pre-school classroom with his hands over his ears. That before Billy and Scruffy became a team, Billy only spoke to us, his therapists and a couple of family members. That Scruffy brought chaos and excitement and non-verbal, unconditional peer attachment into Billy's life and since then, he has never looked back.

What I didn't say, because unless you are us (or maybe you) it's total TMI, is that Scruffy arrived in our house on the very same day that a multi-disciplinary team announced on official looking paper that Billy did indeed meet the criteria for Autistic Disorder. Scruffy's soft paws and floaty bunnies of shedded fur entered our lives on the day that we felt the most lost as parents. He didn't give us a chance to wallow, because he had sticks to destroy, stuffed animals to eviscerate and balls (thrown by a dutiful Billy) to retrieve.

He knew, from the moment he arrived, that he had a job. His job was to be a professional buddy, a 24/7 player, a human in a dog suit for a boy who couldn't handle the humans in human suits.

It's hard to remember how lost we felt on that day three years ago, when Scruffy came into our lives, because, seriously, we are extremely lucky people.

We have each other. We have the world's loveliest child. And we have a giant ball of therapy (for all of us) called Scruffy.

Today, I was proud on his behalf, and proud on my own behalf.

He is a cracker of a dog, and it's not just us who think that.

There are a couple of show dogs who aren't so convinced, but truly, they're missing out.

Saturday, January 15, 2011

I get up again...

This week, I cleaned out our home office.

I say 'home office' in the hope you have an uber-efficient IKEA catalogue-looking image in your head as you read this. Neat, cuboid filing pods, full of colour-coded pages and wireless ultra-modern electronica. That you think of me, in my skinny jeans and crisp white shirt, hair scraped back into a sleek bun, invent-a-personality glasses perched jauntily on my efficient looking face.

Yeah. Not.

Let me paint a before picture. We're talking piles of paper haphazardly composting under the weight of their peers. Books stacked (thematically, at least) making the Leaning Tower of Piza look decidedly vertical. Cables throttling shoes and lassoing the office chair. Balls of dog hair so dense they were actually holding piles of letters up off the floor. I believe the dog hair balls may actually have been attempting to perambulate some of the crap towards the door.

It took an entire day, a rolling series of drinks (coffee, then water, then juice for energy, then more water followed by a nice red to celebrate), and the willpower of a catholic saint, but I did it.

By the end of the day, the filing cabinet was stuffed, the bills were all together (there's the small issue of paying them still to go), the work notes were clipped together and the books were shelved. The dog hair...? Well, most of it escaped under it's own steam into the far corners of the room. The remaining long threads wedged themselves onto my eyeballs, just to help me remember my awesome day.

I learned a lot from my cleaning adventures.

1. I really should clean more frequently.

2. I have a LOT of books about autism.
I really like reading autism books. There's always something to learn. Even if I don't agree with them, I keep on reading. They clarify my instincts, they challenge my perceptions, they jog my memory, they soothe my soul. Even though people have been telling me to stop reading since this trip to the autism theme park began, I cannot see the logic. I admit there's a measure of searching for a needle in a haystack, or maybe it's a 'if I stop reading today, tomorrow's book will be the one that provides the key'... no matter, I truly believe knowledge is power. And the autism books books keep me away from the gossip mags and the chick lit.

3. I have a lot of chick lit.

4. I download and print a LOT of articles, thinking, 'I must read that and then give it to... the paediatrician, the teacher, the crazy dude in the dog park (reflecting how much good it would actually do if I actually did give the article to anyone who actually should read it).

5. We have a beautiful child and we are lucky to have him. As evidenced by the notes he leaves, the pictures he draws, the photos he features in, the Thomas and wild African animal detritus he collects. There's nothing bad about Billy, in the classical sense of the word. He's a passionate, positive lover of life. The life he loves so deeply may not be the one the rest of us might choose, but it's his, he loves it and it is in physical evidence all over the home office. Actually, all over the home, but that's a whole other cleaning related story.

6. We may not be the tidiest parents in the world, but we're doing OK. We have a lot of evidence of this - both the untidiness and the OK-ness. There's a lot of thinking material (stuff about autism, stuff about holidays, stuff about family, stuff about dogs, stuff about doctors and hospitals and therapy, stuff about diets... ugh, I'll stop there...) There's a lot of doing material (art supplies, train drawings, stories written or dictated by Billy, videos of crashes and plastic animal attacks, the next level of motor challenge... damn you roller shoes... we'll get to you soon) and lot of animal material (see perambulating Scruffy hair bunnies above).

7. We should probably groom the dog more.

At the end of the day, as I groomed the dog, I thought... 'We'll be OK' and I exhaled.

For the first time in a month or so, I was able to find some level ground, and how did I find it? By surrounding myself, literally, with the physical evidence of our efforts as a family.

We live, we learn, we earn, we groom. We try, we get it wrong, we get it right, we fall down, we get up again. And some days, we tidy ourselves up a bit, and start over.

Maybe one day, I'll get tidy enough to own skinny jeans and a crisp white shirt.

Yeah. Probably not.

PS. I did this job as I watched helplessly, from 1000 kilometres away, as my hometown and most of my home state disappeared under epic floods. While my family and friends remained safe, many many families did not. Towns are destroyed, homes are gone, lives are lost. 

I couldn't help thinking about the kids with autism in all this chaos. How does a child who struggles to understand normal life, make any sense out of a flood? How do you explain precious objects being swept away, family members missing, electricity cut off? 

I may be feeling better about my own decisions, but I take my hat off to the parents who are shepherding their kids through the Queensland floods right now. 

Thursday, January 6, 2011

I'm just sayin' (again)...

I'm over at Hopeful Parents.

Stop by, if you can and have a look around.

Life is holding me by the throat right now, and it's people like the folks over there who remind me that it will never be as bad as it seems.

And that chocolate is the universal medicine.

Saturday, January 1, 2011

We had a moment...

On the beachfront where we are staying, there's a funfair. It's one of those old fashioned travelling ones that goes where the people are and charges stupid amounts of money for very shabby looking fun. 

Needless to say, Billy thinks it's brilliant.

Well, actually, not needless. Because for the last three years, we've come to the same beach, and the same funfair has appeared. We've driven past it, talked about it, stared at it through hotel windows, pretty much done everything but gone to it.

On New Years Eve, arguably the busiest night of the year, Billy made the call. It was time to go to the funfair. So, being the awesome parents we are (hah!) and having had a couple of pina coladas, we walked into flashing, non-digital, coloured light hell. 

And... it wasn't so bad. That's a quote from Billy. High praise from a kid who hates anything that moves fast, makes surprise noise and does unpredictable things. 

The first stop was a bouncy castle. It had a pair of giant slides on its back wall, with strange inflatable ladders. These ladders were high. Like three storeys high. It's worth adding here that Billy is not one of those brave, no sense of caution autistic kids. He's kind of the opposite. Risk is generally not his friend. He's more a consider-y kind of guy. Unless of course, there's something colourful and interesting on the other side of two lanes of traffic, then consideration goes out the window and, with an ungainly skip, he follows the lure of the shiny.

At the bouncy castle, we waited in line (minor miracle), and handed over five dollars worth of tickets to a man with some teeth missing, and some of the best child management skills I've ever seen in my life. This dude could teach Super Nanny a thing or two.

Billy was in there like a shot. Like the true sensory boy he is, he found a safe spot. But he didn't stay there long. From his primary coloured corner of the castle, he would venture out and get variously creamed by a big kid, chased by a little kid or taunted by one of the three storey ladders.

The child manager whistled loud after five minutes, and all the kids trooped off like a well trained drill team. And we joined the end of the line, to wait for another go.

Here comes the moment...

While we were waiting in line, for a second jump in the castle, Billy spotted another slide. A big slide. A hard slide - both in a non-inflatable sense, as well as a skill level sense. He hadn't managed to make it up more than 1/3 of the inflatable ladder on the castle, but he was determined he was going to do this one. With Daddy.

They climbed the stairs to the top, and there they stayed. Talking, bargaining, fussing with their hessian sliding bag... until they came back down again.

We re-joined the line for the bouncy castle, with Billy very subdued. I asked him if he was OK, and two giant tears slipped down his cheeks. He climbed up into my arms (have I mentioned he's as tall as your average 10 year old?... it wasn't elegant), and said, 'This feels awful.' I tried the speech all of you would have tried. You know the one - 'You did the right thing, Bud. It's great that you know your limits. You don't have to do anything you are not comfortable with...' But, he wasn't having a bar of it.

He fought back the tears, and said, 'I should do it. I can do it. I will do it.'

I'm just going to take a moment here and say that this is the first time Billy has ever reflected on his own behaviour like that. It's the first time he's been able to articulate seeing his behaviour in relation to what's going on around him. The first time he could say that he could see that his peers were able to do something that he couldn't.

And he didn't like it. Not one bit.

Back to the bouncy castle line, we talked some more, and he decided he would try the hard slide the next night (did I mention we were killing time between the kids fireworks and the midnight ones?). He dried his tears by the time he got to the top of the line and when he got the whistle from the castle sergeant-major, he was a bouncy demon. Well, a bouncy demon with a safe zone.

The next night, as it happened, the hard slide was closed. But the crowds were down and he managed to be the only one on the bouncy castle for about ten minutes. Play without kids, is learning without barriers to Billy. It took a few goes, but last night,  Billy Judd climbed his inflatable Everest. Three storeys of odd looking ladder, three minutes of looking over the edge, and ten seconds of personal achievement flavoured sliding to the bottom.

It may not have been the hard slide, but it was the right slide. And he did it.

On the matter of the 'moment', the jury is out. I know it's a very normal developmental step to be taking - giving a crap about how you compare to the other kids. We've been protected from the brutality of peer pressure up until now, and that protection has felt pretty good to all of us. It's hard to play the comparison game with confidence, when your neurology makes you stick out like a very twitchy sore thumb.

But... it's done, and knowing Billy, that first learning journey will propel him into the ranks of those who know it deeply. Another great joy of the disordered journey of autism.

It's our last night on holidays tonight. We've got left over funfair tickets. I'm guessing the Road to Damascus might just lead us to the edge of another brightly lit precipice. 

I just hope there's a safe zone close. For me.