Sometimes I wonder...

I wonder about myself a a parent, as though 'parent' is some kind of independently moderated constant concept.

I wonder if I would have been a different parent, if autism hadn't been thrown into the mix. I wonder if autism makes me a different parent (not better or worse, but different). And I wonder if the way I started parenting, before I knew much about autism, was the way I would have gone on...

Tomorrow, we're off to a birthday party. Our lovely, compassionate, welcoming school community have included Billy in a classmate's celebration. I feel very lucky to have found this village, and know that they are playing a huge role in Billy's development (in the unmeasurable human ways).

But I've already hit the red wine bottle trying to calm the old nerves in preparation for the event.

Will he cope? Will he understand? Will the subtleties of the house party experience evade him altogether?

While I've been thinking, it's sent me back to my own childhood. I've been struggling to remember kids parties in my own life. Perhaps I was one of those kids no-one wanted at a party.

There's no doubt I was not the rudder by which my peers navigated their way through social waters. I dreaded parties, never sure when to eat, what to do and where the toilet was (let's not even start with the issues around using toilets in places that were not my home...)

I know, as a child,  I sought the company of adults, and impressed them with my knowledge of obscure non-child-like subjects (are you sensing a pattern here...?) Perhaps my memory of kids parties is actually my memory of the space away from the children, who always seemed to be engaged in deeply pointless and unfathomably random activities.

Oh God, my kid didn't have a chance, did he?

So, here's my question. And it's not that much different to the ones I was asking in my head when I was a child.

Is everyone else worried about the things that I am worried about?

Do the parents of the perfectly NT kiddies sit at home, knocking back the red wine, (avoiding the work they should be doing... that's a whole new conversation), and thinking 'how are we going to make it through that birthday party?'

Do they wonder if their child will break something without ever knowing it shouldn't even have been touched? Do they fear their child might choose to take a leak in the potted palm? Do they dread that their child will stick out when it doesn't occur to them to greet anyone, or leave the birthday presents for the birthday boy to open?

I think I was lucky (or not) to have been gifted with a temperament that said, 'Just don't do anything spontaneous, in case it's wrong.' This meant my childhood was spent in detective like observation of everyone and everything. When I wasn't discussing foreign languages with the parents of my friends, of course.

Billy has a stunning temperament of his own. Sweet, calm, connected to his experience.  He is like a barge anchored on a choppy bay - unassailably himself, regardless of what life throws at him. He has a rawness about him that makes his days rich and deep, even in their mundanity. Even as a baby, I would swing from thinking he was sick, to knowing he was thriving, just by observing his reaction to the minutiae of his day.

And that is why I may need a little more alcohol before we go to this birthday party.

I hope the other parents have a parallel experience to this. It's tempting to think they're just thinking, 'Oh sweet, two hours off, what will I do?' But, I hope I'm not completely right... not because of their decisions, but because of mine.

Because (and here's the tail of the circle finally coming to grab onto the head), I suspect I would still be the mother who wanted to be at the party with my son, even if he wasn't on the spectrum. I think I may have always been the mother who wanted to walk alongside my kid as he broke out into his own world.

And I guess I've got autism to thank for making that kind of hovering, codependence possible.

Now, if only I could use autism to justify the red wine, the overwhelming desire to eat potato chips 24/7, the ever-present thought that if only cigarettes didn't kill you, I could smoke again...

If you have a spare moment...

Or thirty.

Download this podcast and listen to an extraordinary take on parenting a child with a disability.

His name is Ian Brown, and his son is called Walker.

I may be especially fragile right now, but I cried and laughed and was, as my friend Jane once said, pulled up in my socks.

Enjoy.

It's all a little crazy...

Life has forced autism into the background, as both work and family conspire to eat up our very short days.

And interestingly, Billy has risen to the occasion in a very interesting way.

We are out of town. We are at the beach. We have limited internet access.

Billy loves the variety of locations, n a very un-autistic way. He does rue leaving a place...'I wish we were back at Nanna's house...', 'I wish we were at the lighthouse again...'. But beyond that, he's eating up the new experiences.

We struggle with family members who don't see him very often saying helpful things like, 'Of course a little boy should have some ice cream' (because we are evil nasty parents who have concocted the mega colon that has sent him to hospital in the past... who needs to learn about stuff and make change... give the kid some ice cream for crying out loud). They also like to offer constructive advice like 'If he doesn't like coughing he'd just better get used to it quick smart. People have to cough.' (Of course, an adult's need to cough is more important. Why expect the disabled kiddy to have an opinion?)

But, you know... all in all... he's doing OK. I have learned to resist the urge to punch people (they are advancing in age, it's hardly a fair fight) and they have learned to ignore my pinched mouth.

The beach is a whole other issue. Twelve months ago, we couldn't pay Billy to hit the beach before sunset. Even then, he took some convincing. Now his first words are, 'Can I go boogie boarding now?' Often, it's in the murky light of pre-dawn, and in those instances, I am indeed a nasty parent who refuses his requests. And it's hard because he's often wearing his board shorts endearingly backwards (having dressed himself) and has had a stab at applying sunscreen as well.

He runs, he dances, he body surfs (in a manner of speaking). He climbs rocks, and sails around on his boogie board/skim board/beach limo hauled by an ever more buff Silent Partner (have you ever tried to pull one of those things along the sand? It's not easy).

Something wonderfully light and relaxed has taken Billy over. And whatever it is, I hope it doesn't disappear any time soon. I may have to gaffer tape him all over to seal in the beach bum after we get back to the 'big smoke'.

And finally, the internet access. Interesting... Billy loves YouTube. Almost as much as he loves feet. Once, those two worlds collided (have I mentioned this before...? I'll remind you, either way - do not let your child Google 'Lady Feet Bed' without safe search turned on.)

But on the road, he has accepted that sometimes there's internet, sometimes there's not. When I say accepted, I use the term loosely. It's not a wrinkle-free acceptance, but it's there. It may make life cheaper. Gotta love that value.

And speaking of limited internet access... best I sign off before I-

An odd looking circle...

It's my day on Hopeful Parents today.

If you'd like to read about poo (again), older ladies (unrelated to poo) and coming home... click here.

Spend a bit of time looking around. It's a wonderful place.

It's been a big week...

This week has been pretty intense in my working life, and it's had its knock on effects in the autistic parts of our lives too.

And they haven't all been bad.

As I walk uneasily through an entirely new professional door, I've had to step aside from the tight, controlling mama world I share with Billy. It's been liberating and completely suckful all at once.

Thankfully, the Silent Partner has been willing and able to step into the breech, and together he and Billy have shared a lot of valuable boy time. On the surface, this has meant a lot of excellent train track building, wonderful time spent on the trampoline and a few video game playing breakthroughs. But underneath, the knock on effects are much more meaningful.

As much as a part of me hates it, my boy is stretching the strings that bind us. He's more resilient, more independent, more adventurous. He's been happy to let me set off for work in the early morning (why, oh, why do we have to start work waaaaay across town at 8am? It is not natural, functional or un-puffy for me or my face). He's accepted perfectly logical discussions about why it wouldn't be appropriate for him to join me at work in a noisy, busy TV studio. Instead, he's been building lists of experiences to share with me verbally, rather than bodily. He, and his wonderful Dad, have been hanging out. Doing stuff.

That stuff hasn't necessarily had the 'therapy outcomes' that almost everything he and I do has. It hasn't been considered in the context of what has come before and what may come in the future. It isn't even close to being a part of the 'big picture'. It's just life. Stuff. Holidays.

He's a bit sunburned. He's tired. He's not necessarily as 'monitored' in a health or therapeutic sense. But he's happy.

And I am... a little discombobulated. I'm not getting the hugs. I'm not the first port of call. I'm not the font of all wisdom and warmth. Daddy is. Theoretically, I'm thrilled about this. Realistically, I feel like there's a wall between me and my wingman. And I'm not sure I like it. In fact, I'd quite like to deface it with spray-painted illegible not-suitable-for-children words.

There's nothing new about these feelings, I guess. This is the journey of any working parent. Though it's highlighted slightly by the autism prism, that makes the boy seek the most reliable solace. He loves with a need that many of us shy away from - knowing that the ones he loves interpret the world for him.

So, for maybe the first time, I'm not his Nicole Kidman in that shitty UN movieThe Interpreter (Widescreen Edition) with George Clooney. I've taken a supporting role while someone else (someone truly able and wonderful) walks with Billy on the front line.

I'm looking forward to our holiday. I'll still be stapled to my computer, but I'll be staring at the ocean or my own Mum at the same time. Mostly, I want the permission to hug and be hugged.

I know that as a person, I want a future where I am capable of earning a living and making a difference. But as a Mummy, I want my koala boy, sleeping warm and dribbly against my shoulder, as well. And I'm guessing my employers wouldn't take kindly to almost seven year old dribble on their studio floors.

Change is good. But, man it's hard.

Did I mention it's been a big week?

One quirky step at a time...

This post is going to be full of obtuse references, but I'm hoping it will make sense.

When I'm not banging on about autism and all its interesting tentacles, I work in television. Most of the time it's kid's television. And as much as work drives me crazy (mostly because there are simply not enough hours in the day, and then I choose to spend too many of them reading stupid things I really should ignore on the internet), I really love what I do.

There have been some incredible moments.

I've loved the opportunity to share interesting information on TV, especially because when I was a kid, if it was on TV it was 100% true. I was convinced I would be a crime fighting, cruise taking, semi-robot woman when I grew up. I've loved meeting incredible kids and being able to get their stories on screen.  I've loved meeting innovators, visionaries and complete crazy people... even when the latter were breaking my back... even when I was swearing under my breath that I would never do this again.

I haven't always been as proud as I could be of the work that I've done. I could have tried harder. I could have got over myself and got on with it. I coulda, woulda, shoulda.

But (possibly prematurely) I am proud of myself right now.

It's not all done and dusted, but tomorrow we take a big step closer to putting something on air that brings the two edges of my world together into an uncharacteristically neat package. We go into the studio, to start recording a television program that, at it's heart, pays tribute to quirky, individual, perhaps even perseverative thinkers.

I don't want to name the show, because I'm not stupid enough to think that people want to market a show  with the message that it's all about odd kids. I hope we live in a world one day where the 'a' word isn't a negative marketing tool. But right now, I can't imagine the tweens of Australia rushing to be considered 'just like the weird dude'.

That said, I know (and now you know) that there's something swimming about in popular culture that says:
 - its great to be extremely passionate about something your peers think is odd
 - it's cool to know more than other people about some odd subject
 - you may not be the top of the class but your knowledge is valued
 - if you like knowing stuff that others don't necessarily like, you are a winner

 I hope that (just as I believed that perhaps I would be able to wear a funky gold belt and fly) adults of the future remember the show where the kid that knew (and cared) a ridiculous amount about grasshoppers. And maybe, just maybe, they might have become adults who value the grasshopper expert for more than being a figure of fun. Maybe they'll get over the cringe factor... cos autism can be embarrassing.

I know for sure that I have. And I know my life is much, much richer for it.

An interesting dynamic...

Today at school, there was a working bee - to complete the landscaping around our new building.

For the non-Australian among us, part of Australia's attempt to avoid the worst of the credit crunch was a national school building program. Every school in Australia (practically) has a new building of some kind taking shape in its grounds. And hippy school is no exception... though being hippy school, our building is a stunning, curvy, environmentally sensitive piece of genius.

Today, the school was swarming with parents and siblings and extended family, who lugged rocks around packs of frantically playing kids (we've missed our playground) to realise a long held, and well planned dream. As we left school this afternoon, the BBQ was warming up and the beers were cooling in preparation for a well earned 'school dinner'. Billy had tolerated a Friday full of many baby cries (heretofore known as a day of unmitigated torture) so we left.

Apart from a quick reflection on the immense dedication of volunteering parents, there was a very interesting dynamic today, that's worth deconstructing a bit, I think.

The presence of the parents brought out a whole new range of emotions in a lot of the kids. Some of it was happy, proud, 'look-at-me' kind of stuff. And some of it was not. Some kids, previously stoic and resilient, had meltdowns that required standing still and wailing for Mum or Dad. The ability of individual parents to recognise their own child's cry over the cacophony of an even crazier Free Friday than normal, was pretty impressive. And the unconditional support that only Mum or Dad can provide was also something to behold.

And it got me thinking (again? I hear you ask...)

Disability or no, the job of the parent is a fearsome beast. Apart from all the multi-skilling (pet trainer, food chemist, magician, dust hider, dodgy cake decorator, plotter of evil deeds on those who cross your child...) there's the unforgiving timetable, the unattractive tedium and repetition and the deeply deeply insubstantial pay packet. Seriously, if it wasn't for the hugs and the paintings for the fridge... you wouldn't apply for the job at all.

And yet, from the ranks of our downtrodden comrades come some of the most inspiring innovators I've ever come across.

I remember watching Oprah (just the once, when I had the flu) and seeing a program about women who made millions from ideas they'd had after they'd borne children. One of them was the inventor of Baby Einstein, Julie Clark who turned something that made her baby's face light up into a rest-of-your-life business. Another one was delightfully odd looking and had somehow made millions out of wheat bags and pajamas (despite the fact that these things were, as far as I know, invented by other folk). They impressed me, these women, with their passion and their ability to market something they just knew was important.

Though they didn't feature on Oprah (yet, but she's coming to Australia, there's still a chance), there are two parents here in Sydney who I have a huge amount of admiration for as well. Seana Smith and Benison O'Reilly are parents. Like many, they have kids on the autism spectrum (and NT kids as well). But not like many others, they wrote an incredible book - The Australian Autism Handbook.

This isn't a parent memoir, though there's nothing wrong with a good holy-crap-my-kid's-autistic book (like this one: The Other Country: a Father's Journey with Autism). This is an information book, a guidebook, the closest thing any Australian parent dealing with an ASD diagnosis could come to an instruction manual. It lists treatments and therapies and interventions. It suggests paths of thinking. It reflects on evidence (Benison is a pharmacist) and makes links between concepts (Seana is a journalist). Both women are astonishing writers.

And I feel no hesitation in suggesting that they are both also astonishing parents.

Their work continues in a blog, in separate titles from both women (one a novel, one a guide to entertaining kids) and in an upcoming book dealing with a completely different challenge for parents.

When I feel like sitting on the ground tracing swear words in the dirt, I think of these other parents. When I feel like asking, why did the karmic powers that be choose me for the 'special' parenting gig, I remember the crazy lady with the wheat packs. When I wonder how I am going to handle the next three weeks/months/decades, I recall the actions of the sweaty landscapers (and hope they are enjoying the sausages and beer).

It's not just dealing with adversity, that's almost a no brainer. It's the sheer terrifying newness, and unusualness of forgetting about yourself for long stretches of time. It's the all encompassing dependence. And I've only got one... I take my hat off to anyone out there with a bunch of kids... hooley dooley, that's a whole new kettle of sea creatures.

It's like anything, I guess. You live and learn. And if you can, you take the time to let others in on the stuff you've picked up that you think might be important. There's something about parenting that brings out the best in people. I know there are plenty of brilliant non-parents too, but today I'm seriously impressed with those with kids. It can tear strips off your heart, but if you survive, there's some great stuff on the other side.

If it wasn't for the parents I've met along the way, I know I'd be a quivering, alcoholic ball of bitterness. And on that note, I believe a Friday evening drink is in order.

Cheers to all the parents out there. Thank you for your generosity, your courage and your talent.

And for doing all that nasty landscaping... those rocks looked heavy.