You've got to love autism at Easter...

Being a lapsed Catholic, and having lapsed well before parenthood, we're struggling a bit with the exact sequence of Easter weekend. Especially as it relates to the chocolate and baked treats.

So yesterday afternoon, Billy and I braved the shops to pick up Easter supplies. I say 'braved the shops' like it was premeditated. It wasn't. I didn't even think of the fact that the shoppers of Sydney would be in panic mode before they faced the bizarre phenomenon of a day where you can't buy alcohol.

We wondered why there were few parking spaces available in our usually deserted shopping centre. And when we finally found one, and headed upstairs... we found out why. Mostly, the elbows poked in my sides and in Billy's eyes gave us the message.

Ladies, in panic mode. The odd older man pushing his trolley full of minute steaks and frozen vegies through the throng. And a legion of children peeling the foil off easter eggs and licking the chocolate before replacing the eggs on shelves. Drool and all.

Not. Pretty. Not a bit.

We managed to find a ridiculous number of well sealed Easter Eggs (I went as far back in the display as I could, but now I'm thinking that might have been playing right into the foil peeler gangs' hands..) Billy needed a lot of eggs. Or so he told me. So, in Billy speak, we 'collected' Easter Eggs, and fish (there's that crazy old catholic thing again), hot cross buns (we've been eating them for months, I didn't know they were strictly Good Friday food... the ones we ate in January would have been mighty stale by now) and a pile of random must have Billy supplies (picky eater, anyone?).

From the moment we arrived home, it was time for an Easter Egg hunt. I managed to hold him off until bed time, when he announced we would hunt for eggs tomorrow. I agreed we could hunt for little tiny eggs. I have no idea what saint's memory I smote with that decision. But I'm sure some guy is shuffling in his sandals.

In the morning, we got through breakfast with only eight or nine... hundred reminders about the impending egg hunt. Then, after breakfast came the announcement. We need an Easter Basket... and it needs to go 'around, and up and across and down'. Right, then.

I need to go back a little in history, to sometime around the catholic lapsing. It was the 80s, and along with Wham and U2, I was finding out all about feminism. It made a lot more sense to me than the random believing of men in floaty dresses. So, God out and girl power in.

The knock on effect, apart from a partially shaved, gravity defying haircut, was a complete dismissal of all school subjects and life habits that could be construed as 'girly skills'. Motor coordination was never a strong point (still isn't unfortunately) and so I gleefully freed myself from the demands of typing, home economics, art, craft... pretty much anything useful. I lost myself in the very practical world of ancient history, french and drama. What was I thinking?

Well, flash forward to this morning, and I was asking myself the same question. I needed to Macgyver  up a cute looking Easter Basket that went 'around, and up and across and down', and I needed to do it quickly.

I'll save you reading too many more words, and let you know that the basket I made out of a snipped up coat hanger (goes 'up, across and down') and a dodgy wicker cracker basket (goes 'around') served the purpose only because Billy was jumping up and down so fast he could barely see how crap it was. I'd post a picture, but the basket fell apart after Billy put one miniscule chocolate egg in it.

He hunted, he found, and while he did try all the eggs (Creme eggs and Caramello eggs suck, white chocolate is not chocolate, and Crunchie eggs are for Mummy...) he only fully ate the ones with the familiar Cadbury purple label.

Tomorrow, we have a giant chocolate Bunny to eat. Though Billy uses the word 'we' very loosely.

And on Sunday, he has lined up not one, but two hollow egg hunts. One at home, and one at a friend's house.

It's the religious event that keeps on giving. Which makes me feel very guilty for the lapse, and therefore very conscious of the catholicism.

I don't mean to offend the religious, by the way. I've got a feeling they would be much better at providing a manageable context for all this chocolate hunting. And for that, among many things, I've gotta give them props.

I hope everyone is rested and calm and less caffeinated than my son.

Now here's what happens when people don't understand autism...

There's a controversy in the blogging world, and it all revolves around a blog entry from a woman.

I can't write any more than that without either giving too much away, or exploding with some indescribably hideous emotion all over my stinky brown couch.

If you have the time, read this: http://docs.google.com/fileview?id=0B5C2Ta2YGCfTYmRhOTliZTUtNjQ5ZC00MmNjLWJmYzItNWU5MjNlYzU4ZTc3&hl=en

It's the cached version of this woman's blog entry of a few days ago. It was taken down by the author, and if you read it, you will understand why. Surely that's enough incentive to click.. go on, you can give up a couple of minutes...

There are responses to it all over the internet, in fact you can read some of the best and fairest in some of the bloggers in my blog roll.

But it makes me so sad, angry, sick, disconsolate... add your own depressing word to that list (as I'm almost sure you will after you read it.)

Well, maybe I'm getting ahead of myself. Because if, for some bizarre reason you don't know and/or love anyone with autism, then maybe you would have had a similar reaction. Without the adult dreaming of stabbing herself in the eye with a pen over a child's behaviour bit, hopefully.

In essence, I may have thought something similar before the A word entered our lives. Thought, being the operative word. Even I, who is known for arranging words into colourful little collections occasionally, would never have thought that an adult sitting in judgement on a child could be humorous. Nor could I have spent time chuckling about how I (literally) hid behind my bible as I contemplated hurting an enthusiastically verbalising child (and those who know me and my religious views well, know why but that's another story).

I feel sad that there are people in the world who have no compassion. I feel disappointed that children like mine and carers like me can be considered objects of mirth  because our behaviour might deviate from the socially defined 'norm'. I feel sick, truly on the edge of hurling, at the thought that this kind of discourse is going on around my child, and not being automatically challenged by other human beings.

Let's get it all out on the table. My kid, and his autistic peers may flap, dribble, have toilet accidents, talk about unusual things, repeat themselves again and again and again and again, yell, scream, bite, cry, freak out... are you laughing yet? Because I can go on and on...

And what you will not know unless you walk a mile in our shoes is that we bargained with our own Gods at 3am so we could hear any words coming out of our kids mouths, we dreamed of the day we could bring them to a public library, we got a little feathery thrill when we saw that they were a tiny bit interested in touching a computer keyboard, we hoped that one day they would stand next to another child without clamping their hands over their ears...

I hope this woman's unfortunate decision making reverberates around the world. So opinions like hers will be challenged when they appear... in the street, in the shopping centre, in the library... and maybe the challengers might be people with kind hearts and without direct experience of autism.

Though with the diagnosis rate accelerating like it is... I guess that's unlikely. We're everywhere, people... and we're not hiding behind anything. We're just being.

Edited to Add: Smockity's version of an apology. At least she tried.

Amazon told me to...

A message appeared yesterday, inviting bloggers to include links to products we mention on Amazon. It feels weird but at the same time, there have been a bunch of things (books especially) that have been incredibly useful on this rolllercoaster ride.

So... what follows is my favourite ASD related books, and a bit of info about why I like them.

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder, Revised Edition and its friendly companion The Out-of-Sync Child Has Fun, Revised Edition: Activities for Kids with Sensory Processing Disorder
These books are truly, magical and yet practical friends that have taken us from true darkness and fear into the light. When the doctors were busy telling me I had post-natal depression and an attachment disorder, our wonderful OT encouraged us to buy these books. While she started work with Billy, we got our heads around what turned out to be the core of his challenges. OK, we were lucky. We hit on truly effective and useful therapy early on. Even so, whenever we lose our way, or see the emergence of unusual behaviours... Carol Stock Kranowitz comes to our rescue.

Sensational Kids: Hope and Help for Children with Sensory Processing Disorder
Also good for life with a sensory kid.

Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issues
This one too. Can you tell my kid has sensory issues?

Ten Things Every Child with Autism Wishes You Knew
Lovely book to give to family, new teachers, interested neighbours... simply and honestly written, full of generalisations (but useful ones), easy to read (for the intolerant and uninitiated).

I Am Utterly Unique: Celebrating the Strengths of Children with Asperger Syndrome and High-Functioning Autism
We gave this book to Billy's class when he started primary school, and it's still a favourite. It goes through the alphabet singling out personality traits and skills common to ASD people (C is 'I am a collossal collector' etc). The kids, at that stage, didn't know it was about autism, they just thought it was about being a really interesting person. A lovely positive statement.

Different Like Me: My Book of Autism Heroes
Same function 'I Am Utterly Unique' but for older kids. Lovely, positively written profiles of achievers in history who have autism.

Quirky, Yes---Hopeless, No: Practical Tips to Help Your Child with Asperger's Syndrome Be More Socially Accepted
One for all the teachers out there. Plain and simple. Awesome.

The Complete Guide to Asperger's Syndrome
Tony Attwood's book is the one you buy if you only have $20 to spare and a kid with a HFA/AS diagnosis.

A Friend Like Henry: The Remarkable True Story of an Autistic Boy and the Dog That Unlocked His World
If you have a spare weekend (OK, more likely if you have the flu and are bed ridden... who has spare weekends?) and a HUGE box of tissues, just read this book. It is beautifully written, and inspirational without selling itself, or any of the rest of us, short.

We are not an ABA family, but if you are, it can't hurt to read Let Me Hear Your Voice and this one (though because it's an Australian book it's listed at $60 on Amazon) The other country: a father's journey with autism. I LOVE this book because it's written from a Dad's POV, it's recent and it's heart-wrenchingly good.

For great memoirs by autistic people, I'd add anything by Temple Grandin (eg. The Way I See It: A Personal Look at Autism and Asperger's), anything by Donna Williams (eg. Nobody Nowhere: The Remarkable Autobiography of an Autistic Girl), anything by Wendy Lawson (eg. Friendships: The Aspie Way and anything by Luke Jackson (eg. Freaks, Geeks & Asperger Syndrome: A User Guide to Adolescence) and anything by John Elder Robison (eg. Look Me in the Eye: My Life with Asperger's)

That should take... the rest of your life...

Don't be overwhelmed, though, think of these books as friends... buddies to give you good advice at 3am when your other buddies are sleeping and can't answer your questions.

Things autism has taught me...

They occur to me all the time, and I think I should start writing them down.

1. A person is not the sum of what they are able to communicate to me

It strikes me all the time that Billy is so much more than what people see. We get so used to judging people by what they tell us or show us. And Billy probably shows the rest of the world around 10% of what he's got on any given day. Maybe even less. Some days he doesn't talk. Some days he doesn't even look. Some days he is a charming chatterbox. Some days he is Animal Planet stuck on repeat.

So, if were not familiar with autism, and you met him for the first time on a mute day? You'd probably think, 'Man, that kid's pretty limited/quiet/dumb/whatever'... without realising that he's got a huge amount more going on in there.

So, beyond ASD, I really should remember that. People are not just what I see them being, or hear them being, or am told they are.

2. Animals are not just good for postcards with captions

Non-verbal communicating entities are awesome. They take the pressure for understanding away. They open the doors for genuine reciprocated communication. They just don't use words, which is great, because words coupled with facial expressions, body movements and social context are really confusing.

If you don't believe me, have a chat to a dog... they truly don't care what you are saying, they're generally just happy to listen. It makes you feel good. It makes you relax.

3. The world is really loud

It is. It really is. We know this because sometimes it's just not possible to make Billy calm. Because... the world is too loud.

Here are some thing that are loud, that I never thought about:

- the kettle boiling first thing in the morning

- an owl hooting, especially if it's a recorded part of a soundtrack

- xylophones and chime bars in backing music

- crackling, scrunching plastic bags

All big surprises to me.

That's it for now. Like famous people dying, these things tend to come in threes.

Feel free to add your own observations in comments. We can build our understanding together!

Pearls of Billy Wisdom

Something interesting's happened over these holidays.

All of a sudden, Billy's developed the ability to explain, in his own words, some of his idiosyncrasies. His autistic quirks.

First there was the statement to his Nanna, that he 'hates people'. Qualified with 'I don't hate people, I hate all of the people in the same place as me.'

Then, while he was struggling with waiting for me to secure his seat belt, anxiety building, I asked him why he was getting upset. He said, 'This makes me want to get away'. I asked whether he wanted us to get going on our car trip, and he said, 'No... on my inside, I feel like I want to get away. I just don't want to be here.' I'd call that an excellent description of anxiety.

He has a lot of jerking movements that he cannot control. He told us recently, it feels good when he jerks his arms. He said it feels like a hug makes him feel.

The other day, he explained why he squints sometimes, or looks out of the corner or his eye, or uses one of his hands as a kind of visual guide, in front of his eyes. He said it 'pulls things together, so he can see them being still.' I'm a bit scared by what that means really, what the hell is going on with his vision?

But, my fears aside, it's amazing to start getting some insight into the way he sees the world, and how he feels the world... I think being to explain, makes it much easier for him too.

I tell you, you wouldn't wake up screaming for it in the night, but autism is amazing. Without wanting to sound like I'm some creepy voyeur, it's taught us a lot about life, people, respect, empathy... I could go on and on...

When autism meets Japanese culture

Billy's aunt and cousin are Japanese. It's an awesome part of all of our lives, to have people so close, and yet coming from such a different place (physically and culturally).

This Christmas, Thomas the Tank Engine has given way to animals. He brought a huge collection of animals on holiday with him, and one morning we found this...

And then, a little later... this...



And none of it was done by the autistic person in the room.

He had a secret smile on his face as he took in the systematic, organised and yet highly creative work of his cousin and aunt.

Ad then, he ran through and mixed them all up again!

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.

:)