Monday, December 21, 2009

Hooray for Holidays

1000 kilometres north, family, old friends and the beach.

Billy's feet hit the sand, and thankfully, the fear wasn't there. Only joy.

It seems for Billy, the late afternoon is best for the beach. We're on the east coast, so late afternoon means no glare. Took us a while to work that one out. If the wind is too high, we can forget the beach too. And if the waves are too big, they make too much noise, and that means no beach either.

As he gets older, it gets better. He can handle the elements and the people.

Yesterday, it was pure joy.

After a few weeks of illness, and a long drive, the waves and sand and rockpools were just sheer bliss.

For all of us.


Saturday, December 19, 2009

From little things, big things grow...

Yesterday morning, this sunflower opened in Billy's vegie garden.

He grew it himself, from a seed. Sprouted in his tiny greenhouse, transplanted into a bigger bed. It's the first sunflower, but it follows radishes, carrots, blueberries, zucchini, rocket, celery, basil and tomatoes... all sprouted, grown and eaten (mostly by bugs... must investigate natural bug repellants). Billy has (at least) tasted all of them. OK, sniffed all of them. He'll get there.

If you have a kid, that likes nature and likes to be outside, see if they like sprouting seeds and growing stuff. It's so much fun.

In sensory terms, there's noting better - heavy work, varied input, heat, cold, water, dirt... it's all good.

And I'm ashamed to say, that before we did this, I was very ignorant in the ways of fruit and vegetables. I hadn't made the link between flowers and fruit. I had no idea really, how plants reproduced.

How did I live 41 years on the planet and not get this stuff?

Billy's done 6, and he can tell me all about it.

But I guess that's because he's done it, with his own hands. He's felt it, smelled it, watched it (a little too closely sometimes) and done a little dance around it.

He's pretty impressive

I've got the bug that Billy had. The one that sent him to hospital.

And boy did he handle himself with good grace.

I am grumpy, sweaty, annoyed, sad, petulant, floppy, miserable and a bit angry. He was none of those things. Well, maybe he was a bit floppy. But I can guarantee he was much sicker than I am.

His brand of autism gives him the ability to zen himself into something close to a coma when he is ill. It has frightened more than one doctor. We've had more than one unnecessary ambulance ride, when a GP has freaked out and sent him to the ER thinking he's on the way out. But it's shutdown. It's pure flight (as in fight or flight). Billy doesn't have much fight, but he's sure perfected flight.

This article explains it perfectly -
(note to self: work out why you can't make the 'post link' button work...)
Cut and paste the URL, if you are interested. It's a great article.

Pretty impressive stuff.

The article and Billy, not me.

I am the opposite of impressive right now.

Friday, December 18, 2009

The real reason I am here

Five years ago, we were in a cloud of fear and denial...

We knew there was 'something going on' with Billy but no-one could tell us what. I'd been speaking to doctors and Early Childhood nurses since Billy was a tiny sound-sensitive newborn, and was always patted on the head and told he was fine.

'You should think about anti-depressants...', they said.
'You are overly attached, send him to day care...', they said.
'You've waited all your life for a sensitive man. Here he is...', they said.

Then one spooky doctor confirmed my fears. Just before he hit me up for over $1000 worth of supplements.

So I avoided the 'A' word for a little longer. And sadly, I avoided biomedical doctors too.

But time has passed, and we've changed a lot.


Because of the fine women I've 'met' on this journey. I know them by the words they choose, and the pictures they share. I know them by their generosity of spirit. I know them by their wit.

The women who are closer to me than most people I know in real life. They get me. They understand me. They accept me.

And they challenge me too.

More than anything, I know they would catch me if I was falling. As I would them.

Whoever said computers alienate people from each other, doesn't share my experience.

To each of you, and you know who you are... thank you.

There are probably more poetic words I could use, but I don't think they are necessary.

No doctors, no therapists, no educators, no academics... no-one can teach me more than you.


Doctors have a lot to learn

Billy just got out of hospital. Just another 24 hour stretch to rehydrate him after a non-specific bug knocked him flat.

He's a serious trouper.

I'd just like to send out a big thank you to the nurses who almost always 'get it.' And if they don't, they are willing to learn. You can tell them a bit about Billy's specific brand of autism, without them looking at you like you are threatening their professional credibility. If you ask them not to yell, or get in his face, or lie... they'll do it.

But the doctors... they have the most to learn, and the least willingness to do it. They flat out suck.

Could be Sydney. Could be Australia. I hope to hell it is... because if autistic people are spoken to the way Billy is all over the world... well, that's a lot of bad doctor karma.

Here's a few tips.

1. Don't yell.
2. When you ask a question, especially an important one, think about the wording BEFORE you open your mouth.
3. Don't rephrase the question immediately after you ask it. That's a second question.
4. Don't lie. If you are planning to stick in a needle or a throat swab, say so.
5. Listen to the parents of an autistic child. Actually listen to any parent. You tools.

Sorry. Had to get that off my chest.


Through My Eyes

This kind of speaks for itself.

Sung by Thanh Bui. Music by Fiona Johnson. Lyrics by me. Inspiration from Billy and all those like him.

There are many people out there who do 'get it', and who have the heart and courage to overcome their own issues and just accept.

Thank you Carrington and Fiona, and Thanh and the two Davids. And everyone associated with the St Lucy's School Choir.


Thursday, December 17, 2009

The First Post

I'm insane.
I write for a living, and now I'm going to write for leisure too...
But it feels right. If I can just work out how to make this thing look right, and sound right and feel right... no pressure now.

I've got a total gem of a little boy, Billy. He's just turned six, and he's the happiest kid I know. He wants to be a zoo keeper, and I can't think of a reason why he shouldn't achieve his dreams. He can tell you anything you need to know about just about any animal. His favourite 'tv character' is David Attenborough. He especially loves African animals, but really anything with fur, fins or feathers gets a look in... along with Thomas and Friends.

He doesn't like kids much. They talk to much, too fast, too loudly. He watches them carefully, and talks to a few. But, for the most part... kids and Billy don't really mix. Adults, on the other hand, are OK. As long as they don't fire questions at him and yell.

He has a dog that he loves. They are best friends. Not much can get between Billy and Scruffy. Except barking... Billy doesn't like barking.

Most of all, Billy loves his family. He is most comfortable with us. He loves life. He loves going on adventures. He loves group hugs and curling up with Mummy and Daddy.

Our greatest hope is that the world will get to know the Billy we know.

Billy is autistic.

We often say, there's nothing wrong with him, it's the world that's got him all wrong.