Par-tay, Par-tay...

So, it may seem odd to you that I'm so excited about the fact that my six year old went to a birthday party today.

But I am. I am. I am.

This is not the first invitation (did I mention the school we are at is wonderful?) but it is the first one that Billy decided he would accept. I'm always offending parents by telling them that Billy's idea of hell is a kids birthday party, so we should probably say no... but this Mother wouldn't accept my apology and said we should come, and see what happens.

So, we did. Actually I didn't, I had to work. But Billy and he-who-thinks-blogs-are-stupid went. And perhaps that was the key to a successful adventure. No mummy fuss.

There were reptiles (big drawcard) and a dog (I'm guessing not in the same place as the reptiles)... so the prospect of lots of kids was a little less daunting. I also sent them with the most successful possible present (didn't want any grade 1 back-room talk about Billy's daggy present choices)...

And here's the best bit of the party story. When it was sing Happy Birthday time, the reptile lady suggested all the kids sing as loudly as they could. And one boy, who is in Billy's class at school stood up and said, 'No. We can't sing loud. That would upset Billy.'

That alone makes me confident that Billy will live in a better adult world than I do... that a child was willing to stand up and make a claim for his sensory needs, to advocate for him... that's pretty sweet.

And so, like a selected few of his classmates, Billy came back home with a snake tattoo, a bag of Hershey's chocolate, a plastic eyeball and a bunch of stories abut everything that happened.

Very exciting.

Of course, now we have set a precedent. Now we have to engage with this whole birthday party game, which - to be honest, I was hoping I could avoid. I thought this could be one of the upsides to autism... now we have to give birthday parties too.

Ah well... as long as he's happy!

How Do You Ignore This?

ME: How do you feel when you are at school?

BILLY: Scared.

ME: Really?

BILLY: Yes.

ME: What makes you scared?

BILLY: The kids' noise.

ME: What can I do to make it better?

BILLY: Don't leave me.

Aw, crap.

More Summer Tales (Tails)

We've had a hell of a time getting Billy into the water.

It's one of the things that changes all the time in his life. The bath has almost always been OK, but the ocean, creeks and swimming pools have all been in and out of vogue at various levels of sensory awareness and regulation.

And again, here's where the dog comes in.

Scruffy loves water, and if Scruffy loves something, there's every chance Billy will give it a go.

Unfortunately for Scruffy, dog claws and inflatable swimming pools don't mix (as we learned last summer).

Billy was kind enough to take the time to explain the situation carefully to Scruffy.

On other matters... inflatable swimming pools are awesome for Billy, and I'm assuming for anyone with sensory issues.

The water, the bouncing potential on the walls of the pool, the safe contained nature of the experience... it's all good.

Did I mention how well he sleeps when he's been bouncing about in the water?

Not that we're enjoying having our bed back or anything...

Summer Boy

This song (Summer by Josh Pyke) is the theme behind a pay-tv channel summer promo at the moment.

And Billy loves it. I know he likes it because it's repeated endlessly on TV, and so he's memorised it quickly. But he loves the meaning too.

He sat down today, after singing along to this song, and said, 'I love the summer, Mummy... I really love the summer.'

For the uninitiated, that means no school, no timetable, to pressure, lots of trampoline and dog walking.

If only we could hold this time in our hand for a bit longer.

Or make the world a little easier to handle.

School, blah... and I'm not even a kid

Billy's not looking forward to going back to school, and to be honest... I'm not looking forward to sending him.

He's at the best school in the universe. Truly, it's fabulous. It's brilliant. But for Billy, it's hell.

Too fast, too loud... school is a blur.

I tried to contextualise autism for his peers when he started last year. I'll share this, in the hope that it might help other families with mainstreamed ASD kids.

Print it, share it, use it (if it rings true to you)

Imagine if…

You had a bee buzzing around your head

And someone asked you to say the alphabet backwards

Imagine if…

You were in the middle of a really loud rock concert

And someone wanted you to name all your aunts and uncles

Imagine if…

You were wearing three pairs of gloves

And someone told you to eat a box of sultanas one by one

That’s what things are like for me, a lot of the time.

I’m autistic.

Your brain is like the inside of a computer, full of connections and wires

With messages to your body whizzing around telling you what to do

My brain looks the same as yours, except some connections work really well, and some work really differently.

And my brain wires can get crossed really easily.

So, if I’m doing something a bit funny looking… try not to laugh at me.

It’s just one of my brain connections clearing itself out.

And if I tell you something over and over… just ask me to stop repeating.

It’s just one of my wires plugged into the wrong socket.

And, if I freak out at some sound that you think is really normal… maybe help me get away from the sound.

It’s just because my ears have their own unique volume control.

And, if you think I’m ignoring you… I’m not.

I’m probably just focussed on something else, like a tiny spider on the ceiling on the other side of the room.

Autism is a different way of seeing the world.

And seeing things the way I see them is awesome, but it makes me really tired sometimes.

So, I might not always understand what’s going on.

And, I might need time by myself to think things through.

Or, I might crash or jump or swing for a while to straighten myself out

Don’t worry if I don’t always do things the way you do.

Try to imagine what it’s like inside my head, then you’ll see…

I’m not being rude

I’m not being naughty

I’m not sick

I’m autistic

And I’m just being me.

Motor Skills and Brain Skills Unite!

Mummy, I can hop!

And so he can.

Just like that. This morning he couldn't, this evening he can. Something clicked, some shift of thinking and doing... and so, he can hop.

So many times, our coalition of ASD mothers talk about these surges. It seems like you've been working on something (or secretly embarrassed about the lack of something) and then, boom, it's there.

The school holidays are about to end, and I seriously hope this run of development won't end with them.

This morning, Billy sat down at my computer and started to type. He asked how to spell the word 'because' and wondered about the comma (he was right). But here is what he wrote:

PREDATOR AND PREY

Cheetah chased a gazelle.

And Lion hunted a zebra.

Tiger caught a deer.

But Leopard did not catch anything.

Poor Leopard.

Leopard chased a warthog.

He caught one.

Then lion caught a warthog.

Then cheetah caught a warthog.

Then tiger caught a wild pig, because warthogs are African animals.

By Billy

19 January 2010

6 years old

OK, so we've watched too much David Attenborough, and read too many school readers but... that's not bad for 6 years old.

The autistic part of this story is if we asked him to write that story on paper, it wold take approximately three years. He would be sweating and lying on the ground for that whole time, rising only to scrawl a backwards letter the size of a small planet on top of the letter before...

But give the boy a keyboard, and he's Ernest Hemingway.

:)

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...

Part 2

Oh yeah, oh yeah, oh yeah, oh yeah (sung like the soccer World Cup song...)

He did it.

I did it for most of the night too. But that's OK. He did it. He's proud. We're proud.

OMG. OMFG even.

We might just have turned a corner.

I see chickens of doom on every block, but at least we've turned a corner.

And I'm not afraid of a few chickens... not after last night.

He did it.

Billy officially slept in his own bed.

Hoping, hoping, hoping... Part 1

Don't get me wrong.

I don't have a problem with co-sleeping.

But... first it was the noisy neighbours, then the noisy neighbours' dog, then it was serious illness, then it was night terrors, then it was fear of falling out of bed and most recently an operation. All the reasons why Billy wouldn't, couldn't, wasn't going to sleep in his own bed.

Today, the final pieces of the solution arrived - the mattresses, for the double/single bunks. Add them to the DVD player, the fish tank, the 100s of stuffed animals, the light up globe and the glow-in-the-dark stars... and... dare we hope...?

Billy is planning to sleep in his bed tonight.

Cross anything you've got for us.

And stand by for Part 2.

We grew it, we ate it... and then we remembered...

I was all excited tonight.

After a lovely day (trip to an animal park, then to a garden centre for more seeds for Billy and my vegie garden and even grocery shopping with Billy), with a minimum of drama for us... I made dinner. A nice summer dinner of fish and salad.

The best bit of our dinner was the raw carrots in our salad. Billy and I sprouted the seeds, we transplanted the seedlings, we kept the plants alive and now, we've harvested them. We have deep, rectangular planters hanging off the deck at the back of the house, perfect for drinking in the hot Sydney summer. There are all sorts of things growing there.

Tonight's carrots were lovely. They're called Roly Poly Carrots. Billy didn't eat them, just the grown ups. We congratulated each other on a nice, fresh summer dinner, opened another beer and sat back on the couch in front of Survivor.

Then, Billy said, "Can I go out and do a wee off the back deck?". We let him wee off the deck sometimes, as we're a one-bathroom family. So, I said OK, and watched him walk outside and pee right on the spot where the carrots were planted.

We ate pee carrots.

You might not hear from me for a couple of days...

Mojo-a-go-go

It will never cease to amaze me what happens to Billy when the stresses in his life are reduced.

I know, if you have no experience of autism spectrum disorders or their anxiety/behaviour related friends, you might think it's insane for me to be talking about a six year old having a stressful life.

But the world is stressful. Noise is stressful. Conversation is mega stressful. Doing the right thing is stressful. Hell, knowing what the right thing is, is stressful. Everyday life is stressful.

But four weeks into a seven week holiday from school, with the stresses of Christmas over, Billy has found his mojo.

He can follow instructions, he is creative and funny, he is learning at a rate of knots, writing, reading, adding and subtracting... just by living life. No-one's teaching him. He is learning, through his skin.

Watch... tomorrow will be a new and hideous day. Full of all sorts of crazy leaps of logic, and unpredictable tears, and endless repeating of David Attenborough narration (in that distinctive David Attenborough voice)...

And don't get me wrong... there's still charging across the room with arms out wide like aeroplane wings going 'hnnnnn', there's still a set of eyes way too close to mine looking waaaay too closely at mine, there's still word for word renditions of all sorts of stuff... he's still autistic.

But happy is happy. Calm is calm. And brave is brave.

What are a few odd behaviours between friends, huh?

I've been trying to avoid writing this one...

In my head, I want this blog to be all happy, positive stories.

But this past Christmas has got me thinking about the last remaining dark thoughts relating to Billy's diagnosis.

We're pretty good to go in terms of the future. We're happy that he is who he is, and we're prepared to fight hard to make sure he's allowed to be himself. But the past really gets up my nose sometimes.

In short, I reckon we are owed a few apologies. More specifically, I am due a few apologies.

All the people, some close to me and some not, who told me I was wrong when I tried to tell them something was going on. You owe me a big fat sorry.

The Early Childhood Nurse who was supposed to pick up 'issues' in babies and mothers... you were wrong. I was right. Ordinarily, in normal life, being wrong and hurting someone over it, requires an apology.

The four paediatricians - one after the other who suggested I try anti-depressants, long day care, playgroups, actively un-attaching from my child... you were wrong. And I was right.

Some of my family members, on both sides, who chose to believe I was a hysterical worrier. You were wrong.

The family members who still believe I am a crazy woman. You are completely wrong.

There's something quite profound going on with our child, and it's been there since he was a baby... remember? When I asked you for help...

You should really say sorry. And if you can't find it in your hearts to say sorry to me, then do me a favour.

Be really, really nice to other parents and children that might be struggling with understanding a potentially serious condition in their child. Switch off your judgement, it has no beneficial function. Offer your help instead - what have you got to lose? Look beyond behaviour and see the people inside.

They are little kids, and parents. And more likely than not, they are trying their best.

More than that, they may be in the process of trying to accept their worst nightmare - that there might be something wrong with their child. It's an emotional journey that none of us want to take, but so many of us have to take. I still don't understand why people didn't feel the need to give us a shoulder to cry on... maybe I'm surrounded by pretty hard folk. Or maybe people just find it too hard to care.

This is the only thing that can make me cry now... we deserved better.

We still deserve better.

Puppy love

Scruffy the giant dog came home today from the boarding kennel.

He truly had a great time, mostly because he had a best buddy called Stanley (a chocolate lab) and they played as much as they could. Two weeks of full on wrestling... Scruffy heaven.

The return of the Scruffmeister also woke up a whole new side of Billy. The happy, relaxed, bossy, whimsical sibling side of him. He initiates play, he pushes the dog around, he breaks all sorts of rules and totally knows he's doing it... he's damn near typically 6.

I love this boy. I love this dog. The dog loves the boy. And most importantly, the boy loves the dog.

:)

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!

Finding the words...

Christmas was Christmas. Lots of lovely family encounters, always made a little more challenging by Billy's dislike of crowds. But, for better or for worse, the family get around it.

This was the first time in all of our lives, Billy was able to articulate how he feels in the situations we all just take for granted.

At one point, he sat down with his Nanna and said, 'Nanna, I hate people!' She asked why, and he replied, 'They make me worried.'

Later, when most of the people were gone, Nanna asked if he still hated people. He said, 'I like the people, just not ALL of the people in the same place as me.'

This is a huge moment for him. In the past, we'd have 'behaviours', now we have 'opinions'. It's awesome, mostly because the behaviours are far less extreme now that he feels he can articulate his opinions.

We now have a challenge on our hands trying to help him learn some appropriate responses to feeling overwhelmed.

Right now, when he's backed against a wall, he asks people to leave. Not so good. Or tells them he hates them. Also, not great.

We'll work on escape spaces, and polite ways of expressing his needs.

For now, finding the words will do for me!