Tuesday, September 28, 2010

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.

Friday, September 24, 2010

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.

Wednesday, September 22, 2010

It's time again...

We're just coming to the end of 3rd term in our school year here, and given the dramatic way 2nd term ended, I thought it was worth coming back to report on our progress.

I say 'our' progress because it really has been a progression for all of us - Billy, his teacher and me. Or is it, I...? (must ask the teacher...)

There have been times in this journey through autism land, where it seemed like there was so much to do, and so little time to do it. Our heads were constantly stuffed with goals and appointments and timelines and plans. We had thoughts about certain things disappearing by certain ages, and certain milestones marking points of no turning back...

But this year, things have changed a bit. We've started the process of accepting that things just are what they are, and we'll bend and shape our expectations around and through the ever changing reality of Billy. On one hand, it's a subtle kick in the guts - a clear message that its not going away. But on the other hand (my favourite hand) it's liberatingly positive.

We're not fighting anymore. We're living. We're advocating. We're learning and we're educating. We're just being.

It hasn't been a simple journey, and it certainly hasn't been smooth. It's actually been deeply and unpleasantly bumpy. We've driven over unsuitable therapies with a sickening thud. We've ground the bottom of our vehicle over inappropriate activities. We've swerved away from ignorant people and judgemental situations. We've gestured inappropriately as we sped past unpleasant experiences.

But today, as I chatted (in our regular weekly before school meeting) with Billy's teacher, there were positives to share. We could both say, without glossing over the details, that the decisions we had made about Billy's school life had paid off.

Among our good decisions, were an increase in visuals, an increase in expectations on Billy in terms of his participation in whole class activities and the introduction of teaching aids like a writing claw (Oh, how I love the writing claw) and a timer (to stretch out attention to non-preferred activities).

The winner of all winners, though, was the decision to shorten Billy's school days.

Seriously, I'm not sure it would work for everyone, but for us, a four hour school day instead of a six hour one has changed everything.

Instead of collecting a weepy shell of a kid at the end of the day, I share the car with a chatty, bubbly joke cracker. He shares work with us. His productivity has increased. His attention span has increased. He's understanding peer rules and relationships better. He completes work at school and continues his own reflection at home. His general abilities, led by his willingness to exercise those abilities, have blossomed.

And all because he gets adequate time to regenerate. And I promise I'm not exaggerating. He's more centered, more relaxed and healthier. This term, we've had two respiratory bugs, not ten. And this has been the winter term here.

It's kind of odd that the very thing that overwhelmed us in the past, has liberated us now. To paraphrase the Rolling Stones, 'Ti-i-i-ime, is on our side. Yes, it is.'

Putting the needs of the kid ahead of the convenience of the system has worked. A full school day is counterproductive for him, so we shortened it. Simple, really.  It's a hassle for the teacher, for sure. It brings up questions for the other kids, absolutely. But, those things are handleable. And, it works for Billy.

This week, I realised I can say goodbye to him when he's in the playground (not holding the hand of a teacher), and leave. He doesn't even want to follow me to the gate. He's on the slide, or on his scooter, and he's content (if not happy) to take on the day.

I don't like being the constantly negotiating Mummy, much, to be honest. Not least of all because I often forget the arrangements we've made, or (spectacularly this week) forget which day of the week it is. That is another story, which either involves some strange brain disorder or the admission that maybe my head is too stuffed full of professional commitments.

Despite the speedbumps, I thank my lucky stars every day we found hippy school. We don't always love it, but who does love school every day? Especially at the end of term.

Did I mention it's two days until the holidays? And that we're finally making the trip north, to the beach and the grandmothers and the in-house movies and the no washing up...?

It's that time again.

Sunday, September 19, 2010

A lesson learned the ugly way...

I have a friend who is on a similar journey to ours. She also has an autistic child. She weathers the same poop-storm we do with grace and insight.

She is also autistic herself.

This past weekend, a seemingly innocuous online sharing (she posted an article on FB that many, many of our friends also posted) turned into a really ugly insight into what can happen if families do not accept what I am going to start calling the 'validity of difference'.

I apologise in advance to the people involved, for mining your life trauma for blog fodder. But I think this is crucially important. I won't name you or shame you. Even the people I would quite like to throttle (were I able to do a kind of horror movie reach-through-computer-screens-choking sort of deal... surely there's a Hollywood movie in that...)

Autism is, in many people, a disorder of stealth. You can look 'normal'. Sometimes, you can even act 'normal'. With effort, some autistic people can transform themselves into 'normal' for stretches of time. It goes without saying that that transformation comes at a cost. For the uninitiated, that cost is most clearly seen in children having what look like snotty tantrums in supermarket aisles/playgrounds/birthday parties. There comes a point where the effort of subverting every biological message into an alternate brain/body dimension is just too much.

Anyhoo, I digress.

Back to the ugly online incident.

My friend posted something her siblings thought was stupid. Not unusual. My siblings think I'm stupid all the time. And for the most part, they are right. But, the reaction of my friend's siblings was something I've never seen before.

Actually, I lie. I have seen it before. In the playground. Or maybe in playgrounds in movies, where systematic bullying becomes the kind of abuse that would be an arrest-able offense should it happen in real-life/adult-life.

It was nasty, coordinated, unpleasant undermining of another human being. The attacks, despite many attempts from friends of my friend to defend or defuse, went on in a self-righteous tone that clearly showed these siblings were used to this kind of activity.

And it got me thinking.

My friend was not diagnosed until she was in her 20s. She was institutionalised in attempts to handle her difference, but no-one was able to give that difference a name until she was an adult. It seems like, lacking a framework for that difference, her family refused to give it any real validity. So they seem to have got into the habit of demeaning her as a method of course.

Why? Because they could? Because she saw the world differently? Because she didn't behave like other siblings?  I don't know... I'm not them.  I can't imagine justifying that kind of behaviour in my life, but clearly, they could. And they still can.

I want to draw a line in the sand. I want to make posters and t-shirts and TV ads. I can't live in a world where this kind of behaviour is OK and not speak out... because my son is growing up in it. And he sticks out too. He's different as well. He doesn't know, and shouldn't know in my opinion, that he should hide that difference lest the more 'powerful' decide to call him out.

I'd like to hope I knew this before I witnessed my friend's treatment (which she is handling with integrity, compassion and grace). I know it now.

For what it's worth, I also learned that autistic young people, even without appropriate therapy and intervention can grow up to be incredible human beings. They can be passionate advocates, dedicated partners, intelligent parents, superb workers and the very, very best of friends. Not in spite of their disability, because of it. Different, not less (thanks again, Temple).

I know this because of my friend. I'm not going to name her, but I am going to thank her.

By email. Seriously, I get the whole privacy thing. And I hope Billy understands that when random strangers start talking to him about his poop.

Thursday, September 16, 2010

A crash course in kid...

We've had an odd few days.

Along with having a nasty, chesty bug that just won't go away, Billy's been on an odd kind of rollercoaster - an emotional one. It's up and down, one minute sadder than ever, next minute really happy, next minute saying really troubling things like, 'No-one thinks I'm any good at anything...' and slouching off to another room (where is is suddenly, magically giggling again).

Catastrophiser that I am, I've been googling anxiety in autism, looking back at the old text books,   looking everywhere for ways to handle this new challenge. I've been trying to focus myself, telling myself anxiety disorders are common in people on the spectrum. It's cool. There are heaps of great books about it. It's not new ground, we can handle this.

I've been reading about biomedical and therapeutic interventions. I read this awesome book called Shut Up About Your Perfect Kid, about two sisters with SN kids - one with autism, and another with peadiatric bipolar disorder... just incase we were heading toward something really, mega-rollercoaster-y.

And still, we would have moments, often when Billy was at his computer where he would stop, sigh and say, 'I'm genuinely not so good at anything at all...'

Billy's language development is an ongoing game, and lots of phrases creep in from  external sources. So, I started looking sideways at the other kids at school, wondering if there had been conversations about Billy's deficits while he was close by. Not that there's anything wrong with that, seriously.  We'd all rather the conversations are open and honest. Billy's well able to advocate for himself, and an questions that are too hard for him will always be brought to us anyway. Hippy school kids have a tendency to overturn every stone they see.

I didn't hear anything (and no short person collared me with questions about different brains or funny wiring) so... I relaxed my Mummy Eagle Eyes at school and resigned myself to the fact that approaching tween-dom was bring with it the hormones of doom.

My suspicions deepened when Billy announced, after a giant coughing fit, 'I really truly am not very well...' Poor fella, he's feeling really bad... this is very unlike him. He's usually the trouper in the room.

When dinner came last night, he slumped his shoulders, shuffled to the table and said, 'Oh no, I will never, ever eat a potato, not even mash...' and burst into tears.

Hang on a minute...

I've heard that before...

So this morning, I went to his computer. First thing I checked was his YouTube history. Many, many repeats of Charlie and Lola. Then I noticed there was a Charlie and Lola dvd in the computer as well. Next to his bed, two Charlie and Lola storybooks. Ooooh kay.

If you are not familiar with Charlie and Lola (or perhaps have been living in a TV free cave for the last few years), it's a lovely piece of English children's television. It centres around Charlie who has this little sister Lola, who is very cute and very very funny. Lola is highly dramatic, incredibly histrionic, deeply curious, very emotional... are you getting the picture.

Billy, the king of scripting, has been mainlining Lola. He is feeling what Lola feels and... saying what Lola says. OK, I hear you... I should have been monitoring the screen time a little better, but he's been sick, and I have to work so... you know.

The interesting part of this long week's journey into Lola is that Billy is actually experiencing emotions that, up until now, he hasn't let himself go near. We're getting flashes of defiance, of anger, of pity, of deep sadness. I know a lot of this stuff can be really problematic, but a life without these feelings isn't ideal either.

So, thanks to Charlie and Lola, we are safely entering new emotional zones. He's rehearsing. He's trying it out. He's going through a crash course in kid, courtesy of the BBC. Thomas the Tank Engine has some fictitious competition.

We're talking a lot about what is Lola and what is Billy. We're making links from the TV stories into his own life. We're trying out Carol Gray's comic strip concept, to try and make sure that these TV scenarios 'come out' in the most appropriate circumstances. We've got the video camera out again, video modeling (funnily enough the dogs at the dog park are awesome subjects. We do voice overs)... We're trying.

I know much of the scripting, and the transference are linked to very real feelings in Billy. It's definitely not easy being Billy. Whether we like it or not, his almost seven year old world is increasingly populated with ghosts and ogres and monsters and scary things. Some of them are real, and some of them are not real, and some of them have a spectrummy veil over them and are a little more challenging to wrangle.

I'm figuring if all else fails, I've got like 80 C&L episodes to mine for life experiences. Between Charlie and Lola and the dog park... we'll fill it all in somehow.

And if I get a minute, I'm thinking The Adventures of Typical Kid (and his sidekick Aspie Boy) would make a really awesome kids TV show...

Monday, September 13, 2010

There's a gap...

I seriously need a drink...

Today I took Billy to a psychologist to have another ADOS done. He was diagnosed using the ADOS in 2008, and while it meant we had a piece of paper with Autistic Disorder on it (and therefore could apply for funding and support for schooling), that was it.

What was I expecting? Something useful. Something meaningful. Some information about autism, how it relates to my son and how we might best help him navigate his way through the next little bit of life. What we got was a cut and pasted report, with whole paragraphs verbatim from reports given to other kids. I don't know whether the test gives suggested text for parent reports or the practitioner has her own suggested text... but the report was not helpful. And BTW, do they really think parents don't compare reports? Trust me, we do.

So, given our decision to try to get Billy an aide at school, and the fact that his government funding runs out in November, we thought a new report would be... at least, more helpful.

The ADIR part of the process was useful. Mostly because the questions focussed on comparing how Billy was at 4-5 (first full dx) and now. I discovered quite a lot through the process, especially about the issues that have changed significantly (social understanding, social language, non-verbals) and the things that have stayed the same (sensory sensitivities, play preferences).

So, flash forward to the ADOS today.

First, allow me to set the scene. Billy has never met the psychologist before. Nor has he been to their clinic. It's a totally new experience. Billy is good with new experiences, so that in itself was not an issue.

What was an issue (the first issue), was the psychologist's choice to tell Billy (without consulting me) that Mummy was going to go away and have a cup of coffee and he could go into her (as yet unseen) office with her.

Excuse me? Are you kidding me? What child is comfortable being left in an unfamiliar space with an unfamiliar adult for an indeterminate length of time? Let alone an autistic child who is about to attempt a complex behavioural assessment. And while I'm on this point, what messed up kind of world are we living in that we expect that to happen?

Off my soapbox, I took Billy's hand, made it clear that I would be staying, and we moved into the office.

First thing I noticed was the open windows, letting in all the busy street noise - people talking, trucks trundling past, vacuum cleaners from the office next door blaring. The baby in the waiting room, bored with waiting (and perhaps the room) was making its feelings clear as day through the closed office door.

In that office was a second women. I still don't know who she is, as she didn't introduce herself. First thing she did, was let out an almighty cough. Billy's hands went straight to his ears and he started to cry. I explained that Billy had hyperacusis (though I'd be assuming that someone in the office during an assessment would have taken the time to read the freaking paperwork) and that coughing is not something that makes his life easier. She apologised.

Then, the psychologist started the assessment, using the strangest sing-songy, bad kindy teacher voice I've ever heard. Billy, in his overwhelmed state, raised one eyebrow, slumped in his chair and started yawning.

Then the mystery lady blew her nose.

Billy had one of two answers to every single question - 'Yes' or 'Everything'. That was it. He slid off his chair like liquid every five minutes. He looked around at me for reassurance every time the sing-songy psychologist hit top C. It was a freaking disaster.

Apart from some very cute pretend play with very odd superhero toys (what almost seven year old knows who Aquaman is??), he achieved nothing, completed none of the tasks, gave nothing resembling a correct answer.

And every ten seconds, mystery lady cleared her throat.

Thirty minutes into the session, I asked mystery lady to leave. She was miffed, but she complied. Billy perked up slightly, and started cracking jokes, but the damage was done.

The whole experience sucked.

Now, I get that kids have off days, and circumstances are rarely perfect, but seriously, this was a joke. There was no effort made at all, to set this situation up for Billy to succeed. The noise, the extra person, the stupid patronising tone... What were they thinking?

But, whether this clinic sucks, or the ADOS itself sucks (it is our second time, and I'm starting to think it does really suck) there's an issue here.

The issue is... what freaking use in the whole world is this process for anyone? What possible benefit (beyond a first time dx, and even then I wouldn't trust these people to accurately diagnose a decapitation) is there?

Will anything in this upcoming report say anything at all about what Billy can do or is capable of? The answer is no. And I know the answer is no because he showed nothing of what he is capable of, at all. Nothing. Not one thing. Beyond the hilarious making of a bed for Aquaman with a spiky hairbrush pillow and Wonder Woman's cape as a blanket.

It's a daunting prospect, but I'm quite happy to captain this autism ship. But I need some freaking help, people! I need experts. I need people who know more than me to get to know my child, understand the disorder he lives with and give us some advice about how to take him forward. I need an assessment tool that allows him, like his peers, to succeed rather than fail.

It's not rocket science that a kid on the spectrum will fail at or struggle with certain tasks. Not being able to 'show and tell a random stranger how to brush their teeth in an invisible bathroom'? No real news bulletin. My question is WTF is it in the test at all?

If we're going to do simplistic, no-brainer style tests, what about doing an autism screening that tests how many awesome voices my kid can do from TV, how many Thomas trains he can name, how many episodes of Garfield he can re-enact.

I know I'm sounding like an idiot, but there's some seriousness to what I'm saying. Really. I promise.

Here it is. Why are we working on a deficit framework? Why are we looking for 'can't do', why are we not exploring the autism can do? What is it about autism that means we ignore the abilities, and spend our time frantically trying to repair the inabilities?

Only last night, the Silent Partner and I were commenting on the fact that our (much contested by the ill informed) decision to allow Billy to learn through the things he loves has paid off in spades. Thomas the Tank Engine has taught him numbers, letters, colours, positive social language and a kick-arse English accent. David Attenborough has give him a love of drama, an understanding of big item issues like death and fear, and an encyclopaedic yet completely useful knowledge of animals.

I'm thinking, surely, we want to see what we believe a child's potential is... not just what their limitations are. I'm thinking, we (OK, I) want some help to shepherd Billy towards the most possible success. I think we need a screening tool that individualises autism, that acknowledges that life is a family-centric journey and that celebrates the fact that skills and interests are (at least possible) highways to a better future.

I'm not an expert, but today I met experts who are not experts either. And they are not the first. I don't blame the sing-songy psych or mystery lady for today's travesty, though they did a grand total of nothing to make it less of a cock-up. I do sense that both the test itself, and the lack of suitability of a lot of the  circumstances of testing (lack of relationship skills in the grown ups, distractible elements in the physical environment, complete disregard for the specific sensitivities of individuals on the spectrum) seems to be counter-productive... and soul destroying.

I totally accept that my son is autistic. What I do not accept is that he is a failure. And I do not appreciate either of us getting that message. He has come so far, and has qualities and abilities that most kids his age  would dream of, if six year olds were into that sort of thing.

Today sucked. And next will suck, when I have to go and get the report and sit through a (thankfully not sing songy, as she speaks perfectly normally to adults) recitation of it.

There has to be a better way. Because if there isn't, I'm going to end up drunk for the majority of the next two decades.

Speaking of which...

Friday, September 10, 2010

Who, what, when, where, why...?

I'm just doing what the teachers told me to do...

I have my theories about autism. They come and go, forming and falling apart after five years of reading a lot, watching a lot, talking a lot, listening a lot...

They are based mostly on the rambling links my mind makes, often at 3am. Today, I'm trying to clear out the mental undergrowth and see whether there are any recognisable plants in there. I'm almost sure I've grown a bunch of strange triffid-like hybrids that will never bear fruit, but if you have five minutes, come with me on a bushwalk.

This morning I was watching television, and a commercial came on for some new brand of paint. I've always worried about the renovating we did during my pregnancy and during Billy's second year of life. We did a lot of painting, and you don't have to be Einstein to work out that those fumes don't contain vitamins and minerals.

So, if autism is a genetically inherited tendency disorder that's waiting for an environmental insult to trigger it (which is a theory I think has legs), then shouldn't there be statistically more autistic children among the offspring of professional painters. While we're in this territory, what about farmers and gardeners using toxic pesticides, people working in plastics manufacture, mechanics trapped in enclosed spaces with exhaust and chemical fumes. Surely, if your life is bathed in toxic chemicals, you're carrying around some biological impact...

I wonder if anyone has studied this?

Similarly, is it just me that is freaked out (and you know how easily I can freak out) about the amount of plastic in my life? Since we de-chemicaled, my attention has turned to plastic and it's nasty friend teflon. We've got a lot of it. We had even more, but I've tried to get rid of it as much as possible.

We had plastic that went into the microwave (and while I never microwaved them, Billy's baby bottles were the nasty brand heavily marketed to 'modern mothers'). We had plastic that wrapped our leftovers, plastic bags for food, plastic containers for storing food, food sold in plastic wrapping and bags... Ugh. These things smelled bad, they looked bad, they changed their shape and colour from being used around our food. Seriously, that can't be good. It's not good. It's convenient as hell, but it's not good.

I have a very strong canary in a coal mine feeling about this growing generation of children on the spectrum. And it stretches to their peers with ADHD, allergies, auto-immune issues, learning and behaviour disorders...

I know I'm not alone. There are many practitioners out there saying the same thing. I see that they are buffeted my the press and the medical industry. I see there are cases against them, after people are unhappy with their promised/treatment. I also see many, many cases against mainstream medicine too.

I feel the need to say that I may sound like a tragic old hippy, and to be honest, I kind of like that. But really, we're suburban folk in a suburban house, living a suburban life. I'm not a zealot by nature, but the longer we live in autism world, the more I sound like one.

The medical professionals who are visiting from Vietnam, learning from the Australian autism experience, have made one thing abundantly clear. If we think we are experiencing an autism epidemic here in the developed world, it is nothing compared to what is emerging in resource poor countries.

The reality in Vietnam is that families are appearing at the doors of hospitals desperate for help, in increasing numbers every week. This is happening in a culture where disability and difference is not welcomed. Their 'different' child can be seen as a product of their disrespect for spiritual authority.

Most of these children are on what we in the better resourced parts of the world would call the more severe end of the spectrum. The quirky, odd dreamers are not yet on the intervention radar. Are they there in places like Vietnam, China or India...?

Man, I'd like to know. I think it would help us understand a lot more about WTH is going on, if someone could find that out.

Is autism a disorder of privilege? Is autism a disorder of toxicity? Is autism a disorder of indulgence?

I wish I knew.

I have such admiration for the people who are dealing with day to day autism assessment and intervention (though I know some days I sound like I don't). I know how challenging it can be to deal with the 'how'.

But I really wish I knew more about the 'why'.

Not for us, necessarily (though I wouldn't push that knowledge out of my bed, especially at 3am when the brambles in my brain are particularly active) but for the others - those to come, those in other places, those wondering whether they should be talking to their paediatrician or not, those dreaming of their future 'perfect' child...

I blame the teachers. They probably should have given me a hint that not all the answers are actually out there...

Sunday, September 5, 2010

Over at Hopeful Parents today...

Click through and have a look around, if you want.

They're an inspirational bunch.

Saturday, September 4, 2010

Gently does it...

I just need to take a moment and reinforce the power of a gentle approach to a life that has autism in it... actually in relation to any kind of life.

When wonderful friends generously introduced me to the Australian state of Tasmania almost two decades ago, I was introduced to the idea of leaving nothing but shallow footprints behind as you journey through life. I loved the idea, as much for the liberating concept that I could be quiet and active at the same time, as for all the good environmental reasons.

Flash forward to a few years ago, when my parenting journey began, and...low and behold, as we grew to know and love our beautiful boy, the desire to journey gently became stronger and stronger.

There was a lot of pressure to fast track him through development he was clearly struggling with... from in-laws, and siblings, and medical professionals and early educators. A lot of statements like, 'He'll have to get used to it sometime' and 'He's just a child, you're the adult' ring in my ears, still.

It never seemed right. And I know I am a total softy. I am the one who rotated the position of my stuffed animal collection as a kid because I was worried individual teddies would feel less valued than the others. I get it. It's not altogether conducive to success in the 21st century. But... I still think it's right.

This week, despite some seriously challenging behaviour at school (complete refusal to join the class during inside time, and destruction of other kids' property), Billy also scored some serious goals.

My favourite one involved his friend (the movie going mate from a couple of weeks ago). We've been to his house, we've all been to the cinema, and on Friday this week, this boy was adamant it was time for a return playdate at our house. Billy's not a big fan of visitors, so my hopes were not high.

We drove home from school with Billy's friend in the car. This, as many autism parents will attest, is an achievement in itself. People do not ride in the car with us. If you are not living an autistic life, you will think I am crazy accepting that, but if you do... then you get it, I am almost sure.

The two boys sat in the back competing to see who could make the most realistic fart sound (with their mouths, thankfully. It's still winter here, so opening the windows would have been challenging... never mind that in Billy's world, we do not open car windows).

At our house, they ate gluten free/dairy free (Billy's friend comes from an allergy house) snacks and drank rice milk. Billy's never touched the rice milk I have offered in the past, but once his friend asked for it, it was instantly cool.  They played with trains, jumped on the trampoline and played with the dog. There were no tantrums, no meltdowns and only a couple of snatched toys and sad moments (they came when it was time to go home, and seeing as how Billy was already home... they weren't his).


I need to remind you that Billy will turn seven in November. He's practically an adolescent. He's not experienced in this play-date game, because we have taken a gentle approach. Rather than force him to do the things that the 'other kids' were doing, we let him find his way. We waited until he was able to follow in the footsteps of the other kids... not just the random, amorphous, mob of 'kids' but the individuals that he has grown to trust.

It's meant a lot of disenfranchised Mummy moments, where I've watched Billy's peers joining sporting teams, taking dance classes and disappearing from their families on shared camps and holidays. It's meant a dire lack of couple time for the Silent Partner and I. It's meant I haven't seen a grown ups movie or had a decent haircut in waaaaay too long.

But as I watched my boy race scooters up and down our driveway with his friend, reveling in the statement, 'We're best friends, aren't we Billy?'... my split ends and lack of over-salted popcorn don't seem like such a big deal.

It's not that acceptance is my goal for Billy or for me. I could seriously care less about either of us 'fitting in'. It's the joy in the faces of Billy and his friend, as they play, that I cherish. It's the honest connection that two kids have, that has ongoing meaning to me. It's the genuine desire to have a friend come over and play that (despite all predictions) does exist in Billy, that gives me hope.

Billy's friend shared an interesting insight during the playdate. He admitted that he'd been frightened of Billy at the beginning. But he decided to listen to Billy, then talk to Billy and before long he realised he couldn't stop talking to him. Billy was quite surprised that anyone could be frightened of him, but his buddy's response was... 'You're pretty different Billy, but that's why I like you...'

How much better a world could it be, if more people adopted that philosophy?

The interesting thing for me is that, had we expected Billy to conform at an earlier age, he wouldn't necessarily have retained his difference. He may well be a little more 'normal' (whatever that is) but the quirky, funny, Billy-ness may not have been so apparent. He may have been a little more predictable, but the fact that he allows his peers to overcome their fears of autism and autistic behaviours... well, I can't help thinking it makes the world a little less nasty.

Maybe the autistic tendency toward toe walking reflects my desire to leave less destructive footprints. Or maybe it's the true spirit of my son and so many like him, that personifies the gentle-man/woman journey I aspired to in my own youth.

Or... maybe I'm just excited to be a 'normal' mummy for once.

Either way, the world's a tiny bit more balanced today, and for that, I am very grateful.