Tuesday, March 30, 2010

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.

Monday, March 29, 2010

An emotional clear message

Billy had a bit of a cry at school today, and when his teacher asked him why he was sad, he told her that one of the kids had really hurt his ears. She asked how, and he said by yelling in them. She asked if he would like to talk to the child about it, and he agreed he would.

This is a first. Not that his ears have been hurt by yelling - that happens all the time in this stupid noisy world. But it's the first time Billy has been able to take responsibility for explaining his autistic challenges to non-family. He (according to his teacher) swallowed his tears and told the child what it feels like when there's yelling around him. He said 'Please don't hurt my ears. I really don't like yelling.' He gave his friend a very clear message... with a few tears in it.

I'm proud, and the reason I'm proud is going to seem a little perverse.

I'm proud because he is taking ownership of his difference. He is not concerned about there being a value attached to advocating for his own needs. I know, as he grows and ages, that's likely to change. But again, I've got to thank hippy school for making it possible for him (and all the other kids) to articulate feelings, needs, desires as a natural part of their day. It's a great skill for everyone, but for Billy it's vital.

It's like he's been imprinted with a really useful behaviour - a really useful tool for life. If he can do it now, I hope he remembers he can do it when he's 16, 30, 60...

OK now I have completely freaked myself out. Billy at 16 or 30 or 60. 


Off he goes into his future.

Saturday, March 27, 2010

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.

Thursday, March 25, 2010

Being a little kid and being autistic don't mix...


Billy and one of his friends

So, hippy school is awesome, and Billy, at hippy school is an even more awesome boy. It is truly miraculous.

Each day we see more play, more engagement with his peers, more cheeky flexible boy-ness at school. Kids seek him out for play, and a bunch of games have been developed among the boys that include Billy, special needs and all. We've had those moments that I'm sure the parents of the NT take for granted, where you walk through the gates and someone says 'Cool, Billy (insert your kid's name) is here. Let's play... (insert complex kid game)'.

Being the idiot that I am, I cry when I hear this.

I sat this afternoon and observed a complete reciprocal conversation between Billy and his friend. It was part serious, part silly boy talk, totally understood by both boys. It had jokes, and shared understandings and points where both boys had to stop talking because they were laughing.

And then... there was this.

I sat talking to another Mum, while Billy sat with two boys playing with a squooshy ball (Bumpie Gertie Ball). Good move on Billy's behalf! They were chatting away, and Billy was totally keeping up. They all laughed. I looked over, marveling about what was going on, and I heard one of the boys say 'Your Mum's going to kill you!'. He meant, 'you might get in trouble'.

Billy's face fell. Big tears formed in the corners of his eyes. He stopped laughing. The other boys kept repeating the phrase - 'Your Mum's going to kill you... your Mum's going to kill you...' They were half chanting mindlessly, and half enjoying that they were getting a reaction.  Billy started whispering to himself (never a good sign)... 'No she's not. My Mummy's not...'

I hoped the boys would see what was happening and work their way out of it with Billy. But no... they're little kids. They had no idea that their kid joke was being taken literally. They knew what they meant.

Billy had no idea.

He looked at me, little nose running and tears squeezing out of his eyes. He stood up, and came to me, burying himself in the safety of his Mummy. 'My Mummy's not...' he whispered, unable to look into my eyes.

'No, baby' I whispered back. 'I'm not. I'm just going to love you. No matter what.' I hugged him, hoping that between the sensory feedback and the love, he'd get a better message than the one he'd heard from the boys.

One minute it's brilliant, the next, it all seems way too hard.

There might not always be understanding, but there will always be love.

Saturday, March 20, 2010

In case my theories turn out to be rubbish...

Dear Billy,

I'm writing this on a Sunday afternoon. You are six, and a ball of charm and enthusiasm. Summer is turning into autumn, and we're seriously hoping taking your tonsils out last year will save you from another winter of stinking respiratory infections.

I'm writing this because... as much as I believe we have made pretty good decisions about your life, it could all go tits up. I'd like you to understand where we were coming from.

If you are reading this when you are a teenager, you're probably fully up with the news flash that your mother is not like lots of other mothers. I'm not good at toeing the line. I don't take kindly to ignorant authority. I am a little odd. Not funky, trendy odd either. I always wished what is inside would translate into an easy, eclectic fashion sense, but no... I always look a bit like I borrowed my clothes from a stranger.

But... I digress.

I want to talk autism, and the choices we made for you.

I'll start by saying that I've not been trying to be deliberately perverse. I've been following my instincts. It took me a long time to accept that you were autistic, because I've never (EVER) felt any kind of 'disconnect' from you. Since you were born, and before you were born, you have seemed incredibly logical to me. It's a heartfelt logic too - one that is really hard to explain to other people. You have to know you well, to know you well... if you get my meaning.

It's just that everything you read about autism is all about the whole, 'I just couldn't reach him' and 'he didn't take any notice of what we said' and 'he'd go stiff as a board when we tried to hug him'... style of thing.

You, on the other hand, have always been like our little passenger, our buddy, our wing commander. You cuddle like a koala, and always find solace and comfort with us. You give as much as you get.

You are charming, and funny and smart. You have such a calmness about you, that when the inevitable ASD anxiety takes you over, it's quite a shock. It often seems to me, it's the rest of the world that has the problem, not you.

You are, truly, the human being I would like to be.

Even though you have this label - autism, you have something far more powerful and apparent. You have your soul. You have your spirit. You have... you. No label comes before that.

I know that autism makes things hard for you sometimes. I know the world is too loud, and kids are unpredictable and sometimes it's damned near impossible to pull out an appropriate response to the questions being fired at you.

We've tried to do what works for you, to make those challenges more manageable. That's meant Speech Therapy, Occupational Therapy (Sensory Integration), video modeling and the choice to send you to a small, compassionate, democratic school. It's also meant avoiding anything that seemed too... brutal. No ABA, no RDI, no social skills groups... I'm not slamming those things at all, they seem to do great things for people, but... they just didn't seem right for you.

I've just never seen the logic in forcing a person to change their behaviour - not in relationships, not in a work sense, and absolutely not in you.

It's not a hard and fast rule, though. Sometimes it works better to just teach you 'the way' to do something. Once you've got one way, you can use that as a safety zone and innovate from there. You are awesome at observing what other kids do, and modeling your own behaviour off them.

As I've said, I've always been a bit left of centre. Maybe I've put a little too much effort into staying 'different', defining myself as not like the others... But you have taught me a much more valuable and realistic lesson. You, and Temple Grandin...

Different, not less. It is perfectly legitimate to do things differently. You have a perfect right to do things the way they occur to you, also, you can choose to not do things. Just because the other kids are doing that thing, is not a written-in-blood reason why you must do it to.

I know you didn't choose the autism part of your being. But along with being autistic (and maybe because of it), you are clever and insightful and creative. You have focus and passion and drive.

These are gifts that have the potential to take you a long way.

You may, or may not, head in the same direction as your peers. You may, or may not, achieve the things they do. But one thing is for sure...

You will achieve things that are meaningful to you - things that make you satisfied, and passionate, things that move you.

That, in my humble opinion, is success beyond all measure.

There is nothing I look forward to more, than the opportunity to watch you thrive. I hope we continue to make decisions that help that happen.

If we don't, I ask only one thing. Remember that you are worth it... you are what made our lives, our dramas, our decisions worth it.

Before you, I was just a lot of theories, a lot of hope... and some really bad fashion choices.

I love you, buddy.

Mummy (or Mum, if you are a teenager already)

Thursday, March 18, 2010

Give me some reasons why this is wrong...

Billy came home from school today covered in vegetable dye. He was soaked and filthy from the waist down. He was sweaty and exhausted. And so very, very happy.

He had painted a splashy painting (not really sure what that is, but his shirt gives me a bit of an idea). He spent the afternoon jumping in a creek. He wrote a book by typing it out, then writing over the typed out letters. He'd had a good day.

Now I know we live in the world. I know that kids go to school and they learn how to read and write and add up and eventually, they work out what they want to do with their lives, and if they are lucky, they do it. Right?

But... I see other parents struggling with their six year olds test scores, and reader levels and extra-curricular schedule. I see children quantified by percentages and age level expectations and rankings. I watch kids being told they must write with a pencil until they earn their 'pen license' and being told they are wrong if they can't keep their feet still.

And yet, autism or no autism, I cannot believe our good fortune at hippy school.

It's a vigorous environment, to say the least. It's full of challenge and discussion and thinking and debating. There's also lots of voting. Lots of voting. And singing, and wrestling and making and laughing. There are kids measuring the heights of trees, and planning ways to improve the local environment. There are ice blocks sold every Friday to raise money for good causes.

There are in-depth discussions about behaviour, respect and boundaries. There are lots of tears, and there are lots of hugs.

The interesting thing for Billy in all of this intense human communication, is that he copes. He doesn't necessarily understand 100% of what's decided, but he goes along with it anyway. He gets that he's safe, he understands he's accepted and he's learning - really learning.

I feel like someone's going to slap me on the back of the head, either now or in ten years time, and say, 'You idiot... what the hell were you thinking?' Because what we are doing is so different to all the advice we get (autism wise) and it's so different to what other children are doing. And yet, it feels so right. No, it is so right.

In a place where the individual is valued, where everyone has a right to be heard and listened to, where difference isn't just accepted it is expected... Billy thrives.

To all the therapists out there, remember that the autistic children you are dealing with actually have psyches. They are not a collection of behaviours and symptoms... they are also human beings. The effect of butting yourself up against the world constantly, can be worse than being outed as being different. And the process of butting, can distract you from developing the skills you do possess.

I know we are fortunate to have the boy we have, but I'm sure here are more autistic kids like Billy around. Conformity and normality are not necessarily the best goals for someone wired for difference. But that difference doesn't necessarily mean people can't excel.

To all the teachers and trainee teachers out there (and I was once one), I have learned it is possible to teach the whole child. It's possible, even when society tells you there are bits of that whole child missing - behaviourally, neurologically, physically. It's exhausting and hard and it requires a kind of perpetual leap into the unknown. And it's magical.

It's also (and I really believe this) the only chance Billy has got to have the education he deserves.

Thank you hippy school... kids and grown ups alike (as they are) and all those who have come before testing and trying and taking leaps of faith together.

I know there will be many challenges ahead. I know we won't always agree. But I also know that respect, trust and faith are pretty good reasons to try.

OK... now tell me why Billy should be earning his pen license and sitting still.

Wednesday, March 17, 2010

His Master's Voice

I know I've carried on a bit about Scruffy the dog.

He's a charmer, and a handful and an all around good dog. He came into our lives with big paw prints to fill.

His predecessor, Henry Two-Poos was an awesome dog. He pre-dated me in He-Why-Thinks-Blogs_Are-Stupid's life. Henry took to Billy immediately, which was a real bonus because before Billy, Henry was truly our child. Hairy, stinky... and our child. We travelled together, cried together, moved house (quite a few times) together. When Henry died, a little bit of all of us died too.

Henry Two-Poos

Billy was literally half the kid he was before without Henry. It took the grown ups a while, emotionally, to turn our minds around to a new dog, but we managed. And so, we got Scruffy.

Scruffy - Day 1 at our house

Billy has become Scruffy's voice. When we ask Scruffy if he'd like dinner, a tiny gruff voice says, 'Res, I would rike my dinna'. When we jump in the car after a run at the dog beach, and I ask, 'Was that fun?' A voice from somewhere between me and the dog says, 'Res, I did. I ruv de dog beets!'

When Billy is frustrated, amazingly, Scruffy is too. We suddenly find out, in no uncertain terms that he thinks dogs should be allowed on couches. When Billy is bored, suddenly Scruffy is telling us that we should go to the park. Incredibly, the dog also has a taste for McDonalds, a dislike for a regimented bedtime and a deep seated desire to go to the zoo a lot.

This morning we were curled up in bed chatting. Like every morning, once Scruffy heard Billy's voice, he picked up his favourite toy and brought it in to the bedroom. He's a huge dog, who can rest his giant head on the edge of a king sized mattress from a standing position.

Billy looked at Scruffy, the love peeking through the hair flopping over his eyes, and said, 'I think Scruffy loves me.' 'How do you know?', I asked.

'Look at him, Mummy,' he replied, 'He looks like he loves me.'

I looked. And Billy was right. Anyone could see it.

And in case I didn't see it, a little voice said, 'I ruv you, Billy.'
Scruffy - 2 years old today

Saturday, March 13, 2010

Autistic kids in a 'cage'

(Photo: ABC News)

I've been thinking about this horrible story all week.

And it stinks like seven kinds of stink, but there's more to the story, I think.
(I'm going all Dr Seuss, and it seems kind of appropriate...)

Indulge me in a little trek back through our recent history.

When Billy got his first diagnosis (autistic tendencies at 22 months), the official ASD 'numbers' quoted to us were 1 in 10 000. Enough to make us feel genetically unlucky. My sister also has a child on the spectrum, and there are a few undiagnosed shadows swimming close in the breeding pool... so there was a chance, but we still felt a bit miffed that we drew the ASD card.

When Billy got his second diagnosis (PDD-NOS at 3 years), we were told the statistical chances of getting an ASD dx were around 1 in 900. Seemed like a hell of a jump in a little over twelve months, but who were we to argue with the medical profession? (The statistics aren't the only things to have changed a lot in the last few years...)

When Billy got his official, mandated-by-the-ADOS, diagnosis at almost 5 years, the 'welcome to autism' pamphlet from the Government admitted that we were in good company at 1 in 160.

Half way through last year, close to a year after his diagnosis, the numbers were re-jigged again to 1 in 100, 1 in 58 boys:

Are you still with me? I understand if you've gone to get a cup of tea.

OK... here's the point.

In my mind, this is why Seven Hills West Public School is 'caging autistic kids for their own safety'. In the end, who cares whether some parents requested it? Who cares whether the government thinks the school should be congratulated for its innovative approach to integration?

What matters is just over four years ago, children with the needs mandated by an autism diagnosis existed in far fewer numbers. That's a statistical fact.

We can pretend they were there, just lacking an official diagnosis. We can pretend that a whole generation of parents just suddenly woke up and started noticing their kids were struggling with communication and social issues - over the space of four years... yeah, let's pretend that.

While we're at it, have you noticed I've suddenly transformed into Heidi Klum? Really. You just didn't notice it happening.

It doesn't mater whether we're talking about better diagnosis, or cleverer teachers, or more vigilant parents. In fact, right now, it doesn't mater if we choose to live in the real world and are realistically considering other reasons for the massive leap in the diagnosis rate.

What matters is children with significant additional needs are being enrolled in mainstream schools. And the majority of those schools are not equipped to meet those needs. Worse than that, people with a very limited understanding of autism are making decisions that have a significant impact on the lives of those who live with autism every minute.

That, as a parent of an autistic child, scares the bejeebies out of me.

I'd like the New South Wales Premiers' children to be offered a segregated cage to play in for their own safety. I wonder how that'd go over in the press.

Wednesday, March 10, 2010

The Lucky Ones

When Billy was almost four, he got a stomach bug.

It seemed innocent enough at first. He started vomiting in the evening, and he couldn't stop himself. This is not unusual in Billy (or me), and I was anticipating at the very worst, a trip to the hospital for a drip. On the afternoon of the next day we went to hospital. They sent us home, to watch him for twelve hours. We did, he didn't improve, we went back.

He was admitted to the children's ward of a private hospital in Sydney. They put him on a drip and watched him for another twenty-four hours, then another day, then another. By this stage he was being fed through the drip as well as the straight fluids, as his system just wasn't kicking the bug. There was only the occasional vomit, but he was listless and sad.

On the fourth day, he did a huge wee on the bed. A huge wee. Now, he wasn't fully toilet trained at this stage so we didn't think twice about it. But Natalie, one of the wonderful nurses, did. And we will forever be grateful to her for that.

She immediately asked us to take Billy out of bed, and get him to walk in the hallway. We thought she was a bit crazy. He's sick... why are we making him walk in the hallways? But we did as she asked. He was very weak, so we held his hands and Natalie walked behind us. She asked if Billy always dragged one of his feet as he walked. We said we didn't think so. She swallowed, a big slow swallow... they are not good things to see medical professionals do.

Before we knew it, the paediatrician was called, and they began a series of tests on Billy. Bizarrely, they were checking his reflexes. He had a stomach bug, but they were checking his reflexes... we were very confused.

The doctor told us they suspected either Gullian Barre Syndrome or Transverse Myelitis. Either way, he needed to be transferred to a big public Children's Hospital for further tests. One ambulance ride, a ten hour horror stretch in the ER and an MRI later and the diagnosis was confirmed - Atypical Myelitis.

The world started spinning. Billy lost all reflexes and feeling in his lower body. He couldn't wee, poo or walk. He was admitted to the Neuro Ward of the hospital, where we shared a strange world full of tears and adrenaline and anti-bacterial hand wash with some of the most extraordinary children, parents and nurses you could dream of...

That first night, I saw a Dad in the hallway, as I left the ER to call family. He was standing staring at one of the beautiful artworks that are oddly, incongruously, beautifully displayed all around the children's hospital. He was weeping silently, and turned around as I walked past, revealing his wet face... giving the impression he was well beyond worrying about anyone seeing him cry. He didn't say a word, just held out his hand toward me. I held out my hand, and he tapped it, like a wrestler. 'My turn', he said, and went through the door I had just exited.

Now here's the autistic part of the story. Billy was moved from Recovery after the MRI into a ward. There was a beautiful baby in that first room who had recently had significant surgery on her skull. This tiny child slept fitfully, and cried (naturally) a lot. I'm sure I've mentioned before that the primary challenge autism throws at Billy is hyperacusis. Loud sounds, high frequency sounds, sudden sounds and especially babies crying are all like stab wounds to Billy. So, it's not hard to imagine how he responded, coming out of a general anaesthetic to the sounds of another distressed child.

In the morning, we requested that Billy be moved into a room alone. The response from the Senior Neurologist? 'This isn't the Hilton', she said, 'We don't have single rooms'.

I tried to point out that if he came into the hospital with a wheelchair or a feeding tube, there would be no question his disability wold be respected. But as it turned out they did have single rooms. We found this out when I got the stomach bug that Billy had in the beginning, and we had to be isolated for the protection of the other children in the ward.

Many times during his treatment, neurologists (yes, those doctors that deal with brains) asked why Billy was not answering their questions. They also questioned why he wasn't toilet trained when he was almost four. They told me to 'calm down' when I asked they not yell at him.

It was truly like being in some kind of hell. Because apart from the fact that a third of people who develop Transverse Myelitis (an auto-immune condition related to Multiple Sclerosis) do not survive, we were faced with a number of only slightly less heartening prospects. The prospect of significant ongoing disability. The prospect of dangerous high dose steroid treatment. The fact that we were encouraged strongly to sign a form to acknowledge that there was likely a link to childhood immunisation. The fact that these doctors were acting like they had not seen a lot of autism, despite the size of this hospital. The fact that this environment was not the best, and was still the only option we had in this city.

Billy was given high dose IV infusions of steriods. He was given access to a wheelchair. And slowly, he started to improve.

It took almost two weeks for him to regain use of his legs, and to be able to control his bladder and bowel again. He came home puffed up by steroids, but alive.

And a month or so later, he turned four.

More than two years later, I still relive those weeks in my mind. I look at our quirky, out there, brave little man and I can't believe we actually faced losing him. It really does put things in perspective, as cliched as that sounds.

I still get tied up in knots over hearing the same sequence from Wonder Pets over and over again. I still say 'walk on your feet, not on your toes' ten times a day. I still dream of a dinner table where we all eat the same thing (that isn't in a McDonald's restaurant).

But you know what? He's here.

The tag team Dad lost his daughter. She was three and she had a stroke. She didn't come out of her coma, didn't get distressed by babies cries.

I'll say it again, and I'll always believe it. We are truly the lucky ones.

How Far We've Come (and we're still going!)

I had a chat today with a friend, who is another autism Mum. We met when our kids were in Early Intervention together.

Our boys are like a week apart in age, and couldn't be more different in the way their autism presents. They both have great skills - just completely opposite ones. They have both gone through extreme changes over the past four years, through completely different therapies.

They're both six now... boys on the brink of boyhood. Our tiny troubled toddlers have grown into their own lives.

And here's the preachy bit... the uncalled for advice to anyone who might be reading this who is at the beginning of this autism journey. Conversely, this next passage is for all the people who sat beside us without judgement through the early part of our journey.

We agreed today, my friend and I, that one of our biggest fears was that our boys would have dreams or desires that their disability would prohibit - that they would comprehend what they could not achieve... too early. And then live their lives within those perceived limitations...

Now, I totally get that we can't all live out our childhood dreams. But, now when our six year olds make up great stories or join their peers on the soccer pitch, it's because they love it and because they are good at it (in that six year old boy kind of way).

They are confident, happy boys who love and are loved. They enjoy stuff, they excel at stuff, they try stuff. They're at school. They are learning fast. So far, they are not self-limiting. In fact, they are soaring.

They still have challenges. They have a way to go. But don't we all.

Certainly in Billy, the autism is not going away. It's becoming more of him, really. But in a good way. He's growing into it, and it is developing through him.

We are also understanding autism better. It's not so scary now. Sure it's different, and it takes some flexible thinking some days. But it's like one of the family now. The whacky old aunty who makes Christmas a time to stay on your toes... but one of the family nonetheless.

I couldn't possibly list all the things I'd like to investigate in Billy. I've got fears coming out the wahoo. There are a million tests I'd like to do. But there are also many days when we sail through what used to be a ticket to insomnia and a 3am Google-fest.

Can you tell I'm waiting for a whole wardrobe full of shoes to drop...?

Tuesday, March 9, 2010

Beautiful day

Tuesday at hippy school is swimming day.

And (surprise, surprise) Billy doesn't like swimming. His logic is sound. Kids scream when they get near water. Screaming hurts his ears so... swimming is not for Billy.

So, we have an agreement. I'll come and get him early, and together we will do something useful. Some extension of what's going on at school. Today, Billy came up with a stroke of genius.

Instead of swimming, he decided we would go to the Sydney Aquarium to see his favourite animal (of the moment) - the platypus. He reasoned the platypus would be swimming... as would the dugongs, the turtles, the sea horses. Again, his logic is sound.

Off we went. We arrived and went straight to the platypus, but he (she?) wasn't there. Must be sleeping, Billy reasoned, and we moved on to the rest of the creatures.

The Aquarium was one of our last real battles with Billy. It's always busy, it's dark, there are odd sounds and all sorts of sensory surprises (glass floored section, anyone?).

The first time we went there, it was a disaster. I don't think we got ten steps in before he started to cry. We carried him through the experience, lamely pointing out Nemo and Dory (like all kids, he had his Nemo phase) and wondering what the hell we were thinking.

But it has animals in it, and we earned early that animals were the best chance we had of getting Billy over/around/through the obstacles that autism threw his way. So... we stuck with it. And each visit was a little longer, a little slower, a little less fear driven and a little more... enjoyable.

My heart was in my mouth every time a baby came near, and I had to seriously restrain myself to not growl at parents that perhaps an enclosed dark public amusement is not the best place to allow your kids to cry it out.

It's taken years. Literally three years of buying annual tickets (avoid the gigantic queue!) and now it's just fun.

The dugongs were chomping lettuce, the pig nosed turtle was there, the penguins were herding fish around. It was cool. Billy read things, checked signage for exact species names, corrected random passers by when they named animals incorrectly.

We cut through the secret back way, so we could see the platypus when he woke up... but he hadn't woken up.

In the past this has been meltdown material. And I'm talking carrying a kicking and screaming child out of the Aquarium style meltdown (poor Carrington got that one). But today, he accepted an offer of chocolate on the way home, and... that was that.

We linked hands and walked back to the car in the afternoon sun.

I know there will be other challenges. Lord knows, he's probably brewing one up right now.

But today, was beautiful.

Friday, March 5, 2010

Sexy new car, stinky new car smell

For about a year now, we've been on a quest to reduce chemicals in our lives.

We've thrown away huge amounts of cleaning chemicals and replaced them with plant based alternatives and natural products (vinegar, bicarb and essential oils mostly).

We've changed our food (as much as we can afford) to organic - especially meat and edible skin vegetables.

We've stopped using pesticides at all, choosing to deter pests from invading our space with essential oils and other natural products, than to just kill 'em for the sake of our comfort.

It's made a huge difference to our mental state, and I think, our health. The most noticeable change was in Billy's feet and hands. Twelve months ago, his extremities were swollen and puffy. They were spongy to the touch, with taut skin... unusually taut skin. After three months or so of our chemical reduction, his hands and feet started to look normal. More than that, his fine motor skills improved out of sight, and his general sensory defensiveness level dropped completely. Odd behaviours like spitting disappeared altogether.

The other positive impact is on our budget. All that toxic crap costs a lot of money. I can honestly say our house is just as clean, and we save a lot. An initial investment in essential oils and spray bottles, and a consumables list that includes only bicarbonate soda and white vinegar, plant based washing powder, dishwasher powder and washing up liquid... and that's it.

Beats buying oven cleaner, toilet cleaner, bathroom cleaner, shower cleaner, floor cleaner, stainless steel appliance cleaner, anti-bacterial sprays and wipes, multi-purpose cleaner, fly spray, plant pesticides etc etc etc etc.

Plus, I can't help thinking about the creeks and rivers and oceans now... what were we doing washing buckets of toxic stuff down our drains? Where does that go? Down the drain, out into the waterways, into the surviving wildlife, and back into our bodies potentially. Ugh.

I still struggle with perfume. I love it. And even though it makes me feel sick, it makes me smell nice. Hair dye (one day I'll talk about the grey hair issue) is also a problem, but I've changed to the herbal, hippy version and even though is smells like rotting mushrooms, the colour is fine.

I've got to thank Shannon Lush (http://www.shannonlush.com/) for giving us the brains behind the de-tox. She came and de-toxed our house while shooting her show Lush House last year. And while she was telling us stuff (mostly) that we felt already, we sure as hell didn't understand it. If you ever get the chance to spend some time with Shannon, do it. Really. Do it. She calls herself human-google... and she's not boasting. Seriously, she's amazing. Here's the link to her show, and our part in it:http://www.lifestylechannel.com.au/lushhouse/episode.asp?id=6

So... hippy stuff aside, flash forward to today, when we pick up our beautiful new car. A brand new, no Ks on the clock Subaru Outback.

Very exciting. Seriously wonderful car. But it STINKS to high heaven.

New car smell isn't lovely. It's foul. Really. It's plastic and chemical and stinky un-natural rubber type smells. Really. What the hell have we evolved into that we would covet a smell like that?

I swear Billy will be high after a drive to school.

Oh, did I mention that your sense of smell comes back when you reduce your chemical load...?


Wednesday, March 3, 2010

Books and words and books!

In the last 24 hours, Billy has given me three literacy related moments of pride.

First, when we were curled up ready to go to sleep last night, he chose a book to read.

It was Rex, written by Ursula Dubosarsky and illustrated by David Mackintosh. It's a book we've read before, but not for six months or so. He opened it, and read the whole thing to me. He laughed at the jokes, he found the magic in the amazing pictures, he got it.

Then, at school, they had done some spelling - by sticking letters onto paper. Billy was incredibly proud of spelling 'cheetah'. He showed it to me, and then went around and read other people's words too. One of the first real spontaneous exchanges between Billy and his classmates.

Then, we went to the ABC Shop after school. For the not-Australian amongst you, that's the retail arm of our public broadcaster - think PBS or BBC kind of content. Billy found a huge coffee table book of David Attenborough's Nature's Great Events. He carried it (it was as heavy as he is) proudly to the register, and paid for it. You'd seriously think it was a Maserati. He loves that book.

And I know it's not what you would expect from a 'normal' six year old... but incase you hadn't noticed yet, I reckon my six year old is quite exceptional!

Proud mother moment... over. I'm sure there will be more, though. Indulge me.

Tuesday, March 2, 2010

Oh, the things you will celebrate!

If someone had told me, I would have shoved them like Elaine in Seinfeld, and yelled 'Get out!'

Last week Billy hurt his foot. That's kind of something to celebrate because he could feel the pain. But that's not what is so perverse about how I feel right now. He got a couple of days off school because he was limping and had to keep off his foot (fun, in itself, keeping a six year old still).

The thing that I'm loving the most is that he worked out the connection between being sick/injured and having time off school, and then used that link like any other six year old.

On Monday morning, he was 'too sore' to go to school. 'My foot is very painful, you know, Mummy', he told me.

I just love it. I love the fact that he was playing me. Consciously playing on the emotions he knows I feel. Seriously, that's awesome. I love the fact that he was lying. I love the fact that there was soooo much thought and action involved in the ruse. He had to remember to limp, he had to remember to tell me how much pain he was in. He had to sustain a pretence and read my reactions.

For the record, it was raining on Monday, which always makes for a hard day at school. So I kept him home. On Tuesday, he tried again. But I toughened up and sent him to school.

I missed him. Cheeky monkey.