Jump on the Rollercoaster

If it wasn't happening, I wouldn't believe it...

2012-01-31T21:24:00.000-08:00

It has been a cracker of a week.

When I say 'cracker', I do not mean we won the lottery. I mean we may or may not have lost our minds, on all sorts of levels.

If you read this blog a lot (thank you), you will know that since we began mainstream intervention in Billy's chronic GI issues, he has developed new mental health (for want of a better word) manifestations - namely mild anxiety and very mild OCD. There was also the matter of copious quantities of bile vomit, but that had more of an effect on my mental health (his physical health took a mighty hit too).

In previous years, while Billy was always a reticent (sensory defensive) child, I would not have described him as an anxious child. He stood out from many of his ASD peers in the sense that he seriously couldn't care if you came along and put a gigantic dinosaur in the middle of a carefully created Thomas the Tank Engine scenario and made it dance the macarena. He would simply roll his eyes and remove said dinosaur. He did not need things to be 'just so'. Ever.

Over the last eight months or so, this has changed.

We have seen a gradual increase in anxiety. We've seen more and more questions of the 'is this banana good?' or 'did you wash your hands?' (quite confronting for his grandmother, as she emerged from the toilet at Christmas time). It's been an ongoing worry for us (and clearly for Billy, maybe also for his grandmother). We mentioned it to his GI doctor (rolling eyes, not possible, he is autistic after all) and we mentioned it to his GP (a slightly kinder and less obvious eye rolling style reaction).

This gave us two impressions - 1. we should worry less, and 2. we should stop thinking doctors actually give much of a crap, and start telling cab drivers about Billy's health instead.

So, fast forward from Grandma's Confronting Christmas to last week.

Billy had some blood tests to do. He has had close to a bazillion-gazillion blood tests in his lifetime (if my meticulous filing system serves me correctly). Just before the end of last year, (among increasing questions about toileting habits and general anxiety) he refused, point blank to have any more. We convinced him he had to complete these tests last week, and so he did. It was not easy. It took a few staff, and a millisecond's worth of restraint, but he did it.

He was relieved. ('I'm alive!' he pronounced at the end). We were relieved. He thanked the nurses profusely. They hugged him, and gave him two teddy bears as compensation. All good.

We headed to the movies, to catch up with friends, but we made it to the car park of the movie theatre when Billy started wretching. We apologised to our friends and went home (still haven't seen Happy Feet 2, must see if we still can...) and Billy took to our bed. The next 24 hours were seriously some of the scariest hours we have ever had.

In waves, Billy was consumed by OCD and tics. He would not leave the bed, he wanted all the computers in the house turned off. He moved constantly. His body was wracked by tics, flicking, jumping, shifting. His face was taken over by tics occasionally as well. While he was twitching, he was somewhere else, not with us.

It got so scary we started videoing him, wondering where the hell this was heading. He was consumed by anxiety, endlessly repeating phrases in a cruel parody of his usual echoalia, often in whispers. He was jutting out his jaw, and swallowing compulsively with a far away look in his eyes. He did not eat for most of this time, but he drank litres of water. He complained of reflux pain, but refused to consider any medication. His legs hurt a lot.

Of course, this happened on a public holiday, so our choices for medical advice were an open-all-hours GP clinic where no-one knew him, or the ER. We considered the ER, but knew turning up with our autistic child and saying, 'Um... he is acting weird...' was not going to get us too far (or perhaps it would send us too far...) Who knows?

So we rode it out until the next day. We saw his usual GP, who proclaimed it a 'mental breakdown' and suggested we see his diagnosing psychologist for recommendations to manage anxiety. She also gave is a referral to a neurologist, but she had to be convinced.

Right. That's it then? A 'mental breakdown' at 8. Wow.

We took Billy home (almost back to normal) and sat down to regroup. It was then that we noticed the neighbour's yard.

You may remember the stories of the McMansion construction next door. It's almost complete, thankfully, only the odd dude turns up to rev his truck in the pre-dawn hours these days. In fact, they have begun landscaping. They started this process by killing everything green in the whole backyard with Roundup (glyophosate) two days before Billy went for his blood tests. We found out the details when I was busted taking photographs over the fence, and the neighbours wondered why.

Like autism, pesticides are interesting to search on the internet - lots of conflicting 'evidence'. One site says you could sprinkle this stuff on your cereal, the next says don't even look at a bottle of it unless you are prepared for a mutant spleen to grow out of your forearm.

Billy doesn't have a good history with chemicals. Adverse vaccine reactions, reactions to homeopathics, crazy drug reactions... so maybe, he has reacted to Roundup in the air. Maybe. Who knows.

What we do know, is that the tics, the OCD, the extreme anxiety... are all gone. They left, like they came - gradually over 12 hours or so.

When we go back to the GP for other things, I will mention The Roundup to her. I am expecting more eye rolling. We will watch Billy incredibly carefully for a re-emergence of any of the extremes we saw in those scary couple of days. We will see the psych and talk about anxiety, and we will go to the neurologist and do a full check.

Part of me thinks we should push him into something stressful just to see if he really is living on the edge of a 'mental breakdown'. But while we are in this perverse (and totally not going to happen) part of the universe... can I say, 'Really?' again. Seriously? A blood test pushes him over the edge?

The child who is driven to tears daily by the sound of dogs barking. The child who cannot learn in a school because the sound of other kids sends him into a zen-like free fall. The child who has been admitted to hospital more times in his 8 years than me and my six siblings combined in our lives. He is the one who has a breakdown over a blood test. Really?

He lives with a level of stress that could strike down a racehorse. He is a regular rider on the autism roller coaster. But a very short struggle, followed by immediate acceptance that he was just fine, pushes him into a 'mental breakdown'...? And the same 'mental breakdown' disappeared as quick as it came...?

Really? I know that the three events (Roundup fest - blood test - 'mental breakdown') are linked. I do not know how.

I know I have to accept that perhaps my 8 year old had a mental breakdown, but I know I'm not thinking of marinating tonight's dinner in glyophosate either.

I think I'm missing something...

2012-01-23T17:50:00.000-08:00

Soon, we head to a new gastroenterologist with Billy.

I will call him Dr Poo 2.

I'm trying to get my digestive ducks in a row, as we prepare for a new man in our lives, because I am aware there's a limited supply. I can't keep going to new doctors and going, 'The other guys are tools, I'm hoping you aren't.' I guess I can't also keep asking for information that might be impossible to find. I just need these guys to be honest with me.

Quick poo recap.

Billy is 8. I do not recall being alarmed by anything poo wise until just before he was diagnosed with Transverse Myelitis when he was almost 4. Over a week or so, he had episodes of crying out in pain. We assumed the pain was tummy pain. It may or may not have been given the expected antecedents to TM. He was regular, in a poo sense. Then he started vomiting, and a week or so later, he was having steroid infusions. He recovered, which is supremely awesome, but from that moment, we have been residents in poo hell.

Billy has only very rarely missed a day of pooping, but it has never been easy. It has only rarely been hard (in the not soft sense) but it has been deeply challenging (in the will this ever be something we do not have to think about sense).

We did not know, until we went to the dentist, but Billy has been refluxing chronically for a very long time. After a period of cyclic vomiting attacks in response to PPIs, an endoscopy apparently proved the reflux was cured. We stopped the PPIs and the reflux returned with a vengeance (but thankfully, the cyclic vomiting stopped... that's kind of a win, right?)

And that's where my understanding ends.

There are diet interactions, for sure (dairy is like intestinal cement for Billy), but no diagnosed intolerances. We have an extended family of coeliacs (on my side), but the doctors consistently tell us Billy does not have coeliac disease, or a notable reaction to gluten. We go on and off various diets, we try a variety of supplements, we are currently reliant on osmotic laxatives. There are causation theories voiced (connective tissue disorders, genetic disorders, immune disorders) but they are not investigated.

Some things help, some do not. But I am a kids' tv writer, not a pharmacist/dietician/doctor, and am just a little concerned that my patchwork ideas on GI treatment plans may fall wide of the therapeutically sound mark. Call me crazy, but my comfort zone is closer to poo jokes than poo treatment.

I am no clearer on why this is all happening (and therefore what are our best choice options), than I was when we entered the gates of poo hell, four underpants-abundant years ago.

I may be in complete denial about what medical science is capable of. My logic is this.

If we can grow an ear on the back of a rat, we can surely come up with a valid theory about why Billy can't poop without drugs, and has breath that could knock Superman over (you know the Spongebob episode... that's Billy some days, and his teeth are fine).

I want a bit of 'why'. I want a bit of 'how'. I want a framework, with key words I can safely google (without vomiting in my mouth with fear, as I do).

Am I wrong in thinking it is not OK for a child to be reliant on laxatives?
Is it odd to be concerned that the reflux drugs caused a violent reaction that the original Dr Poo insists could never have happened? (in the end, we brought video, dated and cross referenced to dosage times, but he was still dubious)
Is it out of the realms of normality that we would like some guidance on what's going on, why it's happening and how to decrease the likelihood of it happening forever?

Since Dr Poo 1 and I last avoided eye contact with each other, Billy and I have been through genetics screening and allergy testing. Well, actually we have seen the doctors and done the semi-invasive testing. There's a semi-trailer load of DVDs waiting for Billy tomorrow, if he relents and does the blood tests both doctors have ordered.

We will take those results to Dr Poo 2, among with the charming pictures of Billy's hernia and oesophageal blistering, and see how we go.

In case it's me that's stalling this process, I am considering inventing a new persona - bit of non-toxic hair dye (a whole other story for another day), maybe a hat, a fake accent. Maybe if I approach this doctor relationship as a kind of a improvisational script writing process, I might be able to understand what the hell is going on.

If it's impossible to tell why Billy's gut is a mess, just say that.
If we should totally revise his diet, tell us what to do.
If there's a possibility of an overarching condition (not autism) causing this, investigate it.
If you think I am a crazy woman, join the queue, build a bridge, and get over it.

It is not OK to me, to accept non-specific ill health, under the umbrella of autism.

He is autistic, yes. And many autistic people have gut problems, for sure. But does autism cause gut problems? Who knows? Surely we have to understand what causes autism, or even what autism is (let's start at NOT a collection of behaviours, but a set of medical conditions) before we just drug these kids (adverse reactions, be damned) and send them home.

My aim is for my child to be happy, healthy and free of the possibility that he might crap himself in public. I would like to achieve this without a lifetime of financial contributions to Norgine or any other drug company. I can't help thinking that a life on prescribed laxatives, starting at 7 years old, probably morphs into an future filled with adult nappies, heavy duty deodorising products and very few friends. I'm not willing to accept that yet.

In all seriousness, I feel like we autism families are paying the price for the battle that dare not speak its name. While large pharmaceutical companies and forward thinking doctors fight each other for the medical high ground, we are left sitting in examination rooms apologising for the fact that our kids are sick.

For what its worth, I stand behind Wakefield and his colleagues. I stand behind Dr Bock, and Dr Kartzinel and Dr Jepson and all the doctors who care about asking why. I don't care if they are not 100% right all the time, or if they change their minds, or that the conservative media manages to portray them as dodgy criminals.

I care about one thing - the fact that they are trying to understand why so many autistic kids are so very sick. I care that they are trying to understand why there are so many more autistic kids than there were ten, five, hell, two years ago. I care that they are trying to understand.

Cos, I'd quite like to understand too.

So Dr Poo 2, please don't just go ahead and treat my kid, help me understand why this is happening. Do not brush off my concerns, explain how I can minimise them. Do not, ever ever ever, call me 'Mum'. Unless you are Billy, and it's 2030 and you are now my doctor.

For now, I'm off to stockpile DVDs for tomorrow's blood-letting adventure, and to peruse the image altering hats at my local shops. You may or may not recognise me, next time you see me.

Catching flies...

2012-01-13T04:31:00.000-08:00

The other day, we went to a theme park. It was of those loud, rollercoaster-y, crowded corners of hell that most adults avoid like the plague, and most autistic folk abhor. And yet, we went there.

We went because in the centre of the theme park, there is (inexplicably, really) a pack (a pride? a clutch?) of tigers, and Billy, being Billy, was very keen to see them. Two hundred and ten dollars, a few unremarkable tourist-appeasing marsupials and a couple of dopey big cats later, we were done and we made our way onwards to Nana's house.

The point of today's reflections, though, happened alongside us.

For the first time in Billy's life, I was aware of people gawking at him. No matter the age of the gawker, the look was the same... A slack-jawed, smirky, fly-catching gape.

Billy was wearing ear protection. He was jerking his arms and torso, as he does when presented with overwhelming sensory stimulus. He was grimacing occasionally, and quietly scripting to himself. Really, though, it shouldn't have mattered what he was doing. He was being himself, not disturbing anyone. Actually, compared to some of the choice people gathered around the base of the rolercoasters, Billy's behaviour was actually fairly moderate.

A day or so later, we were at another zoo. It was a zoo staffed by a large number of local volunteers who were visible and vocal and proud of their establishment. Seemed like a great idea, until one of them commented on us calling out to ear protection-wearing Billy. She laughed openly and said, 'can he actually hear anything wearing those?' I started to explain how the ear protection cut the top end of offensive sound out for Billy, when the woman interrupted me saying,'That's hilarious!' I stopped in front of her, smiled broadly and said, 'He has a disability. It's not meant to be funny, but hey, if you find it amusing, good luck to you...'

I was briefly angry. Actually, flames may have curled out of my nostrils. And then it got me thinking about what's going on with us right now.

We are walking through a developmental doorway with Billy. He has developed enough language and understanding to begin to have a handle on what autism means to him. He is building a kind of meta-awareness of the effect autism has on his body and mind. He is starting to compare himself to others, and his behaviour to the things he sees other people do.

It's a condensed version of the rollercoaster every day.

We have been talking a lot about the body jerks and grimaces over the last few days. Apart from the theme park/animal adventures, our hotel is by the ocean (sun, crashing waves, screaming kids) and has an old fashioned holiday fun fair parked out the front of it (more screaming kids, gigantic inflatable fun, blinking lights and popping balloons galore).

Suffice to say, there has been a lot of jerking and grimacing.

We have been talking with Billy about whether he can control any of these movements. We have been trying to talk about about how other people view those body movements, and whether or not it is a good idea to suppress them at any time.For what it is worth, the jury is out, conclusion-wise. He does not fully understand the conversation.

But, these are not conversations one wants to be having with one's child, at any time.

'So, sweetie... Do you know how odd you look?', and 'My lovely boy, see those looks on those people's faces? They are looking like that because you look different to other people. Understand?' or even 'Do you think it's important to be the same as everyone around you, my love?'

Like any parent, I am proud of every single thing about my child. I think he is wonderful, and beautiful and inspiring. More than that, I am unashamedly on his team, no matter what. I want to be, and I have to be, no matter how odd he might look.

This isn't just about accepting Billy, it's about accepting autism. It is about understanding that a disorder like autism comes with added extras, that make our beautiful boy a potential object of derision, amusement or judgement. It's about accepting that while some challenges may be overcome, some will be around for life and all are as natural to him as his hair colour and preference for tan coloured foods.

As tempting as it is some days, I cannot spend my time wishing for him to blend in. I don't want him to live in a world where that's an aim. While I am one who would happily hand over my kidneys if it meant the challenges of autism could be taken away from Billy, I should probably preparing some other vital organ as an exchange for the promise of a world free of ugly, ignorant stares.

For us, so far, despite a lot of therapy and research and a lot of attention to health, autism isn't disappearing. It is morphing. We are very lucky that Billy has developed a lot of useful skills, and that he is a little boy with a calm temperament and a lot of love in his heart.

This holiday, as lovely as it is, is also a reminder that not everyone shares Billy's positives. We need to play to his strengths and help him develop skills to help him navigate through a world that needs to judge or laugh at people they don't understand. We must not give him the idea that he should hide, and yet we must try to give him strategies to understand (accommodate/avoid) the pitfalls of being different.

A couple of years ago, I thought this game was all about getting him 'school-ready'. I thought if we could crack that old chestnut, we were somehow home free. If I could turn back time, I would go back and slap myself a little.

After the slapping, I would remind myself that I've never been fond of jumping through hoops. I would gently remove the hoops that the parenting books and classes placed in my hands, and burn them along with the triangle pillows and the ugly floral smocks.

I would tell myself there is no blueprint. There is no roadmap. There is, maybe, a messy looking brainstorm... A doodle that looks like it was done during an inconsequential phone call many years ago. Among the crude flowers, houses drawn without lifting the pen off the page and mustaches drawn on celebrities, there are some useful keywords...

I would point out the words - love, acceptance and courage. And maybe wine or chocolate. Also some semi-harmless weapon for the idiots who laugh and stare.

At Hopeful Parents...

2012-01-06T16:57:00.000-08:00

Click through for some holiday fun.

What I want...

2011-12-30T02:02:00.000-08:00

Billy and I spent the afternoon with one of his old classmates. In true Australian summer fashion, a few more kids from his school dropped around as well. The sun was shining, the screens were turned off and the pool was glittering (though arcticly-cold... a whole other atypically Australian summer story).

For us (OK, for me), these are glory days, magic times when the schedule is soft and flexible. I can drink a little too much coffee, and talk to other mothers. Billy can be himself outside of the safety of home. Both of us can revel in the fact that he is, above all, an 8 year old boy on his long summer holidays.

The other families we met at Billy's old school are truly second to none. Smart, funny, accepting people who continue to welcome us into their lives even though we have spent a whole school year apart. The adults are the kind of folk teenage me hoped to be have as grown up friends, and the kids are beautiful centred human beings with passions and talents they love to share. I know we throw the word around a bit too much these days, but truly... in terms of these people, we are blessed.

The chance to sit and talk about the things 8 years olds do (swing from being 16 one minute to being 4 the next, find beauty in simple things, suddenly decide they can take on a huge dangerous challenge without consultation with taller folk) is a gift, to me.

It works way better for Billy to have maximum non-social space when he's in learning mode, but home schooling isolates us a bit in this regard. Even though we try to fit in a lot of playdates, there's nothing like that schoolyard for affirming, non-judgemental comparison. It's not like I definitively mark Billy's or my success and development against anyone else, but a bit of kid-focussed benchmarking is a great leveller.

It's nice to know that other boys suddenly think they know everything and get anxious when they realise they don't. It's awesome to see other kids' skills often sit in a different place than their bravado lets on. It's lovely to watch other almost tweens yawn and hug their mothers at the end of a long swimmy afternoon.

In autism world, it is very easy to pin everything on autism. I know Billy is always going to see the world differently to his NT peers, and he's going to gather skills and process experiences in a unique way too. At the same time, there's an 8 year old boy in there.

While the others leapt and swam like penguins, Billy sat on the edge, scripted Spongebob and watched, clearly plotting the time in the near future when he would try out their tricks. The other kids grazed on fruit and biscuits, and Billy sat on the edge, jerked his arms and watched, noting which foods were eaten enthusiastically and which were the snack wallflowers. He takes these social occasions, in the same way he takes a lot of his life these days - as an active, reactive and charmingly unusual observer. You can practically hear the cogs turning, processing, sifting through the possible and the preferred, rejecting the loud, the close and the bright. He needs a ton of McDonalds fries as bribes to attend these events, but he gets a lot out of the experience (if it come in measured doses).

I absolutely, positively, definitively do not believe the ultimate aim for Billy is to be as NT as possible. In fact, I think the opposite. I think if he can be free to be himself he has the best possible chance of living a happy, productive adult life. But the terms of his future will be dictated by the NT world, by people I do not know now and maybe will never get the opportunity to brief on all things Billy.

I do hope, that in every phase of his life, he has the most possible options on the table - just like his peers.

I know we are fortunate that this current peer group welcome Billy and I. We are a different package, for sure, in so many ways. I try to give as much as we receive, in what ever way we can, but really it's hard to quantify the exchange. Without turning my kid into a sideshow amusement, I want people to know how much their friendship means to him.

This afternoon is, in a nutshell, what I want for Billy's future.

I hope that people will accept him. I hope that acceptance comes not from his ability to achieve some proximity to 'normal', but from an equal transaction. He is here, you are here. Together, you connect or not as needs demand. It's not going to be exactly the same social transaction that most people effortlessly exchange multiple times an hour, but I hope it can be as equal a transaction, nonetheless.

Give-Take. Connect-Disconnect. Notice the difference-Still give/take, connect/disconnect.

I see now that he challenges his peers with his staunch desire to not be freaked out at every turn. I see that his peers are thinking, 'I'm just asking him a question and he's walking away, what the?' I also see that the longer we know these peers, the more flexible they have become at making themselves heard by Billy's ears (or assessing the exchange is not that important after all and happily moving on to other things).

I want the future to be full of these kids. I want these kids, as adults, to know that should Billy ignore them (and the communication is important), they should try to ask a new way. I want these kids to retain their acceptance and their lack of judgement. I want them to grow up knowing that making an effort with Billy is worth it. I want them to avoid falling into the shallow pit of fatuousness that says anyone who is different is automatically stupid and open for derision (or worse).

I want, more than anything, for these kids to grow up not frightened of Billy or anyone different to them.

Failing that, I want a lifetime lease on a giant island full of African animals, trains and the odd video game. And a nice granny annexe with high speed internet.

Offending people is easy...

2011-12-22T22:57:00.000-08:00

This week, with school over for the year, Billy and I have been driving about like looney tunes trying to get everything ready for Christmas.

I'd like to say there's a long story involved with why we are last-minute-Christmas kind of folk. There kind of is (dog kennel, crossed wires, postponed opportunity to have all that cooking and tidying done by older more experienced members of the family), but really we'd be running late if we'd started last January. So... we've been driving around a lot, and listening to the radio a lot. Actually, I've been yelling at the radio while Billy downloads endless episodes of SpongeBob onto (my) iPad.

Gosh, people on the radio are offensive. Especially people who ring in and complain about Christmas carols not being played in public places because we are all tip toeing around Muslims, apparently... (I hope I don't have to clarify how stupid I think this is...) Also people who carry on about how Christmas isn't like it used to be (oddly, I'm not like I used to be when I was 12 either, but I don't see the logic in lamenting the change). I'm also offended by the fact that it's supposed to be summer and it hasn't cracked 25 degrees Celsius yet (and this is Australia. It's hot here. It's kind of our thing.)

At the same time as I should be turning off my radio, and singing Christmas Carols to myself (lest I offend my neighbours), there's been an interesting question milling about in my head.

In autism world, the one thing we know is that all our kids are different. They all have different strengths and challenges. They look different. They behave differently. So much so, that at times it seems hard to fit them in under the same disorder umbrella (I have quite the image in my head, reading back that last sentence).

In reality, it means that we autism parents are often having conversations with each other as though we 'know' what the other parent is experiencing, when actually we kinda don't. Well, we do in the sense that we have lived through the 'holy crap, my kid is not like Johnny at playgroup' moment, and also in sharing the 'Thanks for that, Doctor, are you sure you have no actual advice for me?' diagnostic moment, maybe we also share the 'I will stab you with a pen if you continue to look at my child like that' impulse. But really, do we have a sense of the differences between our experiences at all?

My family is pretty fortunate as autism goes. Billy can talk, even though a lot of his language is scripted from other sources (some odder than others). He has pretty good control of his body, even though he is in constant, jerky motion that precludes kid stuff like team sports. He has stunned us this year with his capacity to learn at an age appropriate level, despite the fact that he struggles to to it in a mainstream classroom. He has poo issues. He has immune issues. He knows a lot about household insect eradication.

I have been fortunate to make a lot of friends in autism world, some I've met in real life, some I only know online. I've said before, and I'll say again, they are - generally speaking - astonishingly good people. Up until now, I've not really thought about how I could better respect their children.

I could make a list of the things we don't have to deal with or I could make a list of the things I am grateful for, or I could make a list of what I'm afraid to ask questions about...

I realise I often treat my autism friends in the same way I DON'T want people to treat me. I don't ask questions. I'm too scared to validate their reality. I just assume they think I understand, when really I don't.

How do you say... 'how do you talk to your child who doesn't talk back? or 'how does it feel when your child hits you with no remorse or understanding?' or 'do you think your child will ever write/speak/live independently'? You don't. You can't. So instead, we just act like we understand... or not.

This week, I've set some new rules for myself.

1. It's not so much what you say, it's how you say it.
I should think before I say, 'I wish Billy would stop doing Mortein commercials'. He's speaking. He has awareness of what he's saying. Yes, a lot of it is scripted. Yes, a lot of pronouns get reversed. Yes, he has a lisp and a BBC accent. But he's talking. Many, many of our friends are not. Bitching about how Billy is talking isn't helpful. Not for me, not for my friends, definitely not for Billy. Asking for help/strategies/experiences in the area of language... that seems OK. Whining because his language is a bee's penis away from 'normal', not OK.

2. It may never improve, so work on acceptance.
We're all up for a bit of autism hating. Not hating of autistic people, but feeling negatively towards the struggles that autism throws at our kids. But... shrieking with revulsion at some new autism related behaviour is just a recipe for disaster. Not just for us, but for everyone else. I should be aware of how it feels, to the family of an adolescent who can't control their bowel for me to be blathering on about our sacrifices to the god of underpants. He's wearing underpants. Successfully more than not. That's a win.

3. Don't cry wolf.
Alternate rule title: Pick your battles.
Some days, hell some weeks, I feel myself settling into a wail-fest. Everything is hard. Everyone is an idiot. No-one gets it. I end up wanting to bombard my friends with the poo coloured clouds that are stalking my life. I want to fill my phone conversations, my emails, my posts online with my 'problems'... pithy, witty, well phrased versions of my problems but my problems nonetheless. But... I forget (all the time) that people are dealing with stuff I can't even dream up. I forget they don't have the time or the space that our life with one pesticide obsessed Dalai Lama of a child affords. Already extended people have a limited space for my drama. They have a perfect right to a bit of... what's the phrase I'm looking for...? Compassion fatigue.

4. It's autism, not the plague.
You have several pairs of big underpants. Wear them. Proudly.

I do not want to be the reason why my friends are yelling at their computers. Nor do I want to become a stereotype of myself - the autism parent version of the cranky old lady who thinks people should wait in queues and respect their elders.

I want to present a positive view of autism to the world. I want people who have questions about autism, to feel like they could ask me anything. I want to have some accurate and meaningful answers for them.

I have no idea where Billy will end up, but I have some control over my own journey. So, like all good life changing resolutions, I will start from the inside out. I'm working on serenity, on integrity and on some consolidation of my cut-throat ninja skills for the moments when fools try and cross me.

School days...

2011-12-08T17:15:00.001-08:00

As I type, Billy is lying in bed, covered in stuffed toy animals, pretending I can't see or hear him. In truth, all I can see is the remote control pointed strategically at the TV. As it is very close to the end of the year, and I have Buckley's chance of fishing him out from under assorted predators and prey, I will take a moment to talk about our schooling story.

Around this time last year, I was posting obtuse distressed messages about Billy and school. It was, I would have to say, the worst experience I have ever had.

I would take a gigantic vomiting hangover over what happened a year ago. I would choose to carry around a bag of stinking dog poo over what happened last year. I would re-live every heartbreak I've ever had again and again over what happened last year. It sucked like nothing has ever sucked.

As a part of that process, though, we ended up choosing Distance Education for Billy. That, in itself, was worth all the metaphysical nastiness.

In Australia, Distance Ed is homeschool with the curriculum prepared, supplied and marked by a teacher at a base school. It seemed like the best option for us because it gave me a chance to benchmark both Billy and myself. Six years of therapy and two years of self directed learning at school meant we needed specifics about where his academic skills needed to be.

Choosing a school with a self-directed learning focus is one (repeat, one) of the key mistakes I made in school choice. As his mother, I can see that Billy is 'bright'. He has intense skills in the area of literacy and memory in particular. As a trained teacher, I believed very strongly in the philosophy of self-directed learning. As a human being, I hoped they would adapt to him as they saw him in action. I believed that his teachers were seeing (as we saw) that autism + Billy = an almost intractable inability to learn unsupervised in a busy, heavily populated environment.

They did not.

In what I can only believe is good faith, they assured me he was indeed accumulating skills in the magically osmotic fashion that true, self direction allows. It was quite confronting to realise, after two years of not inexpensive schooling, he could not write more than his name independently. He had no concept of number facts to 10, never mind 100. He was still grasping a pencil in his fist. On the upside, he was reading really well (something we did constantly at home, and which was done once a week by volunteer parents at school).

Why did we not notice these things sooner, I hear you ask? I have two answers. We did, and we believed.

We asked the teacher why Billy's skills were not advancing. She had two answers. He will do it in his own time, or we have no more staff time to allocate to him.

Our alarms increased (not surprisingly) in direct proportion to his teacher's defensive and progressively more absurd avoidance tactics. She had buses to catch instantly, she had double scheduled meetings, she had gloriously detailed excuses for the lack of evidence of actual work completed at school by Billy (involving fine motor skills and mental dexterity well beyond his abundant means).

What is clear now, very very clear to me, is that schools with no specific training in special needs (generally) and autism (in particular) have no right accepting children like Billy among their enrolments. If they do, they must commit to and undertake training.

Also, it is clear that schools whose philosophies centre around genuinely laudable concepts like 'equality' and 'equity' can and will use those concepts (when pushed) to defend their lack of resourcing in relation to special needs - after all, if one child gets 'more' of anything than another, it's not fair. It's not equitable. Right?

We also learned (and this is the scariest clarion call I have) that some schools will support their staff in the misuse of legislative guidelines. It is somehow more appropriate to lay blame on the parents, and (I guess) hope they will go away, than to address the specific issues relating to a child's educational failure. It is also more important to protect the reputation of the school and the integrity of a clearly ill-equipped teacher than it is to actually resolve a situation where a child has not received an adequate educational service.

I am confident there is no parent out there that would calmly accept that their 7 year old is functionally illiterate/innumerate and doesn't require intervention. I am confident there is no autism parent out there that would accept that a clearly cognitively capable autistic child should be allowed to continue to attend school without autism specific support. I am confident there are only a few human beings out there that believe it is OK to make false claims to a government body and effectively deflect from their responsibility over the first two things in this paragraph.

At least I hope there are only a few, because otherwise other families may have to go through something similar to what we have experienced.

While I'd love to rip the school a new one (and would have, gleefully, had our Human Rights Commission complaint not resulted in a full apology to us), what I will do instead is say, 'thanks'. Through your unbelievable action, you allowed us to find Distance Education, and that has saved Billy's education.

Twelve months later, he is writing, building maths skills and still reading like a champion. He is meeting expectations for his age group. More importantly, he is accumulating those skills in a method appropriate to his abilities. We work at home, sometimes in the park or at a local cafe. He needs constant redirection and encouragement. He responds well to his schedule and work expectations being written on a whiteboard each day. He likes his tasks broken down into steps. He is very fond (as am I) of a hug at the end of each task (though this gets a little time consuming when one single spelling word is considered 'a task' and we have a list of twenty to get through).

He still has contact with his school friends. We see them once a week, individually, instead of every day in a giant pack. He learns from them, the same way he did when he was at school, just without the exhaustion that came from constantly decoding language, various walls of sound and motivations of fast moving children.

It may not be everyone's idea of educational nirvana, but Billy is growing and learning again. He is way less sick than he was last year (GI wars not withstanding). His social skills and expressive language have taken an awesome leap into smart-arse tween world. The only down side is an emerging love of Louie the Fly.

Which will take up a whole other post. Or not, if we can convince Billy that animated insects used to promote toxic chemicals are not appropriate mind-mates.

A giant pile of stuffed gazelles covering all but your remote control finger, on the other hand... clearly, they are just fine.

Excuse me while I go fish him out from under there and do some more spelling and hugging.

At Hopeful Parents...

2011-12-06T02:07:00.001-08:00

Click through to Hopeful Parents for a few thoughts about the hard days.

Is it all real...?

2011-11-29T23:24:00.001-08:00

We're back on Terra Australis, finally back in ship shape (jet lag is pretty impressive stuff, we have discovered), and I'm still dipping back into memories of our adventure wondering what was real and what was not.

It's bleeding over into all aspects of our lives.

On a completely fatuous level, I am constantly checking that our excellent, stylish and cheap-as-chips fashion purchases are still in the wardrobe. I'm afraid, having got them so cheaply and from such fabulous places, they will spontaneously combust leaving a pile of cool looking ashes. So far, thankfully, no such carbon has appeared.

On another, more complex, level... over the last week or so, there been a whole new curve to our fairytale ball.

It's a wily beast - the autism spectrum. It's a collective, interpretive diagnosis. To be diagnosed officially, one needs a bunch of folk to observe/document/agree/sign off. It's not an easy process for anyone. Given we are in an unprecedented era of diagnosis (a recent report stated a child is diagnosed with autism in Australia every 7 hours, though this is seen to be a gross underestimate by many locals), it's not just the diagnostic process that's a challenge.

A label of autism is hardly a golden ticket. It is, however, a public acknowledgement that the challenges present at diagnosis are unlikely to disappear completely (despite the carrot of EI funding that evaporates at age 7 in Australia). It's a statement to society at large, that this person will require support throughout their life. Some may need a little, some may need a lot. Some may need money, some may need logistics, some may need services, most will need a bit of everything.

Though there are occasional rumblings of diagnoses being 'handed out' to kids who do not 'have' autism, and allegations that autism is used as a catch all diagnosis for kids who have less specific conditions and yet require support in the education system, I have never seriously (ever) thought that people would genuinely, appropriate autism for their own nefarious ends.

Yet, for want of appropriate services, or want of attention, or want of a community (who knows) it seems like people will. One one level, good luck. It's in the news. It's an emergent field. There are a lot of support systems in place for autistic people and their families. If people truly cannot find their spot, or truly need interaction with therapeutic and social services, then... I guess... do what you have to do.

Here's the challenge, though.

The autism community is held together with chewing gum, string and trust. We look to each other for honesty, for guidance and for the odd drop of alcohol. We do not necessarily have a gigantic pool of reliable evidence and consistent professionals behind us. As much as we'd like to be able to look over our shoulder and find a musty library full of validated, repeatable research to back up our instincts and experience, it's not there (yet). What we have is each other - similar people on a similar journey with their hearts similarly open to the needs of our fellow travellers.

Maybe from the outside, this stuff looks attractive. There are a lot of smily faces, and LOLs and exclamations of preciousness in our kids. There are a lot of virtual places to be heard. There are a lots of cups of tea.

It is the secret bonus of living a life with autism - the generally stellar standard of the folk who share that life with you and your family. It's the wind beneath our wings, the carbs in our lunchbox, the air in our balloons.

Until, it proves to be stale, empty or smelling like poo.

It doesn't happen often, but when a toxic dust storm blows through a bonded group of folks in shared need, it leaves a nasty taste and a bunch of rattled personalities in its wake.

Sometimes it's a new parent in denial, lashing out at the possible identification of their child as actually autistic (insulting long diagnosed families with the revulsion in their voices). Other times it's an inflated ego, taking the 'moment' a little too seriously. Occasionally, it's a line of some kind that just shouldn't have been crossed. No matter what, it stinks.

I had forgotten how vulnerable we can be. I am rarely focussed on the challenges of the parents (we signed up when we threw out the birth control, in my mind, what you get is what you get). This week I realised that the grown ups in this game are betting on a house of cards we have built together. When the occasional dangerous wild card is revealed, it destabilises the whole structure - and we have to build it again.

We can, and we will, because we must. It is not possible to walk this path without compadres. Well, maybe it's possible, but not advisable. As I learned in Yosemite National Park AKA Heaven on Earth, if your friend knows the size and sole pattern of your shoes, someone can find you if you get lost.

OK, that's only vaguely relevant, but along with the video of the bear peeling car doors open, it was my favourite bit of Yosemite info.

Really, what I want to say is... the future will be full of genuinely autistic folk (more than now), and we are not really doing a bang-up job of caring for them in the present. Please don't randomly bugger it up now. It's already like catching falling jelly shots. It doesn't need to be any messier.

It's never over, even when it's over...

2011-11-21T20:22:00.001-08:00

It's our last night on the Great Family Adventure, and I'm in utter denial.

It has been so magical, I don't want it to end. We have travelled around for three weeks, covered over 3000 kilometres and heard Moves Like Jagger at least 1500 times.

OK, I'm over restaurant eating and room service (even though we have all discovered some wonderful food while we've been here). I'm looking forward to my own bed (though the cleaning pixies who tidy up the room and do funny things with Billy's toys will be sorely missed). I'm very, very keen to see Scruffy again (as I hope he is to see us).

I'm kidding myself though. We have seen the most amazing things, we have met the most amazing people, and we have proven to ourselves that we can achieve things we thought were impossible. The USA has been very kind to us, and we were pushing the friendship. We asked a lot, and America, being America said, 'Sure.'

Can we have a side of bacon? (asked in every restaurant). Sure.
Can you put each food on a separate plate? (also in every restaurant, as a precautionary tactic). Sure.
Can we leave here and come back later? (every zoo/theme park). Sure.
Can you seat us away from the babies? (every where we go). Sure.

Unbelievable.

We just had to mention the word autism, and people said, 'Sure'.

It's hard to pick a highlight. San Diego Zoo is the pinnacle of all the city zoos we have ever seen (and we have seen quite a few). The haboob that accompanied us on the road to Phoenix was the scariest, most beautiful thing I've ever seen. Disneyland was pure magic, everything it promises and so very much more. They deserve special mention for their autism respect alone, but over and above autism, it was just plain good to us. Yosemite was majestic, calm, stunning, awesomeness. Half Moon Bay was life-changingly gorgeous. San Francisco was achingly cool and welcoming. Los Angeles is so much more excellent and so much less scary than I ever thought it could be.

After so many years of acclimatising to autism, it has been a joy to experience things with Billy - his way. It's been new to all of us, and so we have let him lead. In many ways, we have seen this whole adventure through his wonderful eyes, and it has been wonderful. We have weathered new noise together, we have taken new steps together, we have planned through totally new experiences together... it has truly been a lesson in life.

We are all tired. We are all hoping for a calm trip home. We are all changed.

I can't believe I have met some of the women who have held my virtual hand (hell, they have held my hair back while I have virtually hurled. Repeatedly) through this autism adventure. I can't believe the ease of those meetings, the depth of the connections and the aching sadness I feel returning home knowing I am putting physical distance between us again.

I can't believe we didn't argue/fall apart as a family/go crazy/break down in the desert or a gang neighbourhood/get caught in crossfire/witness a major crime/gain 10 kilograms/see a Kardashian... OK, I am genuinely a little disappointed about the last one. But a minor Real Housewife is a fair substitute, right?

I can't believe we have taken an autistic child on a huge adventure, and apart from a tired attempt at a meltdown at Los Angeles Zoo this morning when the Bat Eared Fox and Echidna refused to make an appearance, he has been astonishingly balanced.

I can't believe I am saying all of this when we still have a 14 hour flight to go.

For now, I will sleep and dream, and taking the advice of Crowded House, I will not dream it's over. I will dream of a second flight with no babies and a slew of new movies.

Thank you, America. For being amenable and positive and accommodating. For pulling out a bunch of smiles when your economy smells like a swamp and you are still leading a massive international conflict. For still having low prices despite my last statement.

I was genuinely scared before we came. Those of you who know me well will know it is not hard to scare me. I can see disaster in a cupcake.

My fears about this country, and Billy and us were unfounded. I will remember this forever and live my life accordingly.

At least I would, if it was over... but too much has happened for this to be an experience that ends. I've still got my virtual hair holders (thank heavens I didn't turn out to be a complete looney tune), I've got around a bazillion photographs and as long as Customs don't raise any eyebrows... I have a secret stash of snack food to smooth the transition to home.

Life is sweet.

The Choking Man...

2011-11-20T11:31:00.001-08:00

A week ago, at a lovely restaurant, in the company of extraordinary women, I witnessed the near death of a man I don't know.

He was eating dinner a couple of tables away, when something got stuck in his throat. For what seemed like an hour, but was closer to a minute, choking man tried to catch a breath, and he couldn't. One of our fellow diners gave him the Heimlich Manoeuvre, to no avail. The sound of someone trying to breathe, and being unable to, is seriously something I never want to hear again. A good 50 people sat frozen in time, watching, hoping, not sure what to do, wondering whether we should stare or move away.

Thankfully, at the peak of his struggle, a second diner took over the manoeuvre and the choking man was saved.

Just like that, crisis over. The choking man thanked the Heimlich men and they all went home.

We tried to resume conversation where it had stopped, matrix-fashion, a minute/hour ago. We tried but we couldn't. Two of our number were crying and the rest of us were a little discombobulated. It's not surprising, in many ways. Choking is scary. Almost dying is scary. The way a potential choking incident resolves itself instantly is just plain surreal.

We talked about the fact that choking hits close to home - low tone kids, oral motor weaknesses, accidents involving other kids... it was hard to watch, hard to experience, hard to reconcile.

For me, I have to say, the thing that hit me the most was that it was over.

I was relieved the man was still alive. I was absolutely delighted the men who intervened had been successful. I was glad the crisis had passed, and everyone could go home in one piece.

But if I'm really honest, and I try to be, I was a bit jealous. Because it was over for them.

I'm not proud of having these feelings. I'm not proud of appropriating someone else's crisis for my own emotional wallowing. But it stinks some days that our crisis isn't over. It's not always a crisis. Not every day. But it's always lurking. It's hanging around, waiting for its moment.

Some days, I want someone to appear from the shadows, give me a good sharp squish in the solar plexus and make the whole damn thing go away.

I don't want Billy to go away, not for a second. It's not really even about autism going away, although I'm not going to lie, I don't love every aspect of autism every day. It's about the underlying possibility of crisis.

Choking man reminded me that crisis is possible for everyone, for sure. It's awful to watch, and obviously, it's awful to experience. It's life. I get it.

But he also made me realise that my challenge as Billy's mother is to make sure he lives his life without the sense of lurking doom that I often have. We've spent too much time in hospital already, we have too many medications and doctors in our lives already, we see the smoky threads of future issues. We need to find a line between informing him of the risks he faces (maybe we should start with properly identifying as many as we can) and letting him live a life full of possibility.

We've been travelling for three weeks, and he has handled himself like a champion. He has been brave and accommodating and engaged. He has learned to regulate himself to the point where he can ask for (OK, demand) his own time (thank you, YouTube). He is clearly challenged, no doubt about it, but he manages his challenges (and is permitted to manage his challenges) in a way that has made this whole adventure possible.

The fact that things might happen, the fact that things will happen... just is. The things might be great or the things might be challenging, but we have to be open to... things. We have to welcome... things. Without a sense of dread.

This is probably a good mindset to be in as we prepare to get back on a plane for 14 hours.

Without knowing anything about choking man at all, I really hope he's OK. I hope the men who intervened and saved his life are OK. I hope everyone in the restaurant is OK.

At the end of the day, I want my kid to be OK.

Nothing to see here.

Banana slugs drink water...

2011-11-17T15:54:00.001-08:00

Last weekend, as a part of the fun, we took the kids on a hike through one of the most painfully beautiful woods I have ever seen.

To give context to my woods-niavity, most of the bushwalking near where I live is kinda crunchy and eucalyptusy. Not that there's anything wrong with that. You can travel to far, milder corners and find less natural crunch, but for the most part, it's fairly bright open country. Beautiful in its own right, but not like Northern California.

Billy needed a bit of quiet time (read: time away from people) so he stayed back and I got a chance to hike alone, and see both the countryside and the company I was keeping in a relatively relaxed state.

Relaxed, that is, until the discovery of the banana slug.

On the rich smelling, dark ground, many feet below the tops of the giant redwoods lay banana slugs. They were bright yellow, they were huge (think, small banana) and they were slimy to the max. All of which made them irresistible to the kids.

As a homeschooler, I can confidently say you could base an entire integrated curriculum on these guys.

Mathematics: count the banana slugs, compare length, girth, weight.
Literacy: ode to the banana slug, invent banana slug language, a banana slug is slimy: discuss
History: where was this banana slug born? What did this forest look like before the banana slugs?
Geography: plot the banana slugs on this map
PE: can you move like a banana slug?
Drama: can you think like a banana slug?
Religion: what does a banana slug believe? where do banana slugs come from?
Writing: why does your handwriting look like a banana slug did it?

See... it goes on forever.

Banana slugs became the glue that kept the kids together. Eeew. That reads much more literally than I meant it to. But they did unify a group of kids of all neurological persuasions. The kids spotted them, stared at them, watched them intently, protected them, and identified with them. It was quite a joy to behold.

The best part was when a banana slug, previously thought to be an orifice free (if that is possible) organism, turned its head (or perhaps its other end) and slurped up some water off a leaf. You would have thought someone had turned on a DS. All the kids were gathered around the poor thirsty banana slug, willing it to drink (or moisten its nether regions) again. They talked, they theorised, they argued, they wished... and in that moment, it was genuinely hard to tell which children had autism and which ones didn't.

Thank you banana slug. Glad to meet you. Don't want to eat you. You helped us all have a hike in the woods without worrying about all that other crap I talk about all the time.

You may have another drink (or bidet) now.

For the love of pixar...

2011-11-15T08:49:00.001-08:00

This morning we are curled up in San Francisco, recovering from our wondrous weekend.

As we are within driving distance of Pixar headquarters, I thought it was time to explore part two of the lessons learned from our adventure on the american autism island.

Before I talk about the magical powers of Lightening McQueen, I just want to quickly talk about the isolation part of autism parenting, and why we really don't need to feel isolated at all.

Almost a year ago (I should find the post and link to it, but I am in holiday mode and can smell bacon cooking somewhere), we had a get together of a bunch of the Australian families involved in a local autism board. We all 'knew' each other, online, and had done for anything up to four years. But only a couple of us had actually met in person. To be honest, we were nervous. We were wondering how the adults would get on, we were worried how the kids would get on (or cope), we were worried it would wreck the tentative balance of the board...

Thankfully, nothing bad happened. In fact, spookily, nothing bad happened. No disagreements, no meltdowns, no tears. Not even from the kids.

In case that was a freaky case of all of us breathing calm gas, or something... I came to America, to meet some of the parents from the first autism board I ever joined. And this weekend proved that a relationship formed on the internet, can indeed translate into real life.

I'm not advocating purchasing a spouse online, though if that's what you want to do, who am I to stop you? But I am trying to point out that the support you can get online (stress that 'can' a few times because we all know the pitfalls of crazy online boards) can seriously save your life.

One of the original members of our board, opened her house to us last Friday night, sharing her beautiful family (and their various toys). There were five boys (three spectrumites, two NT sibs), three grown up men (sharing BBQs and comparing beer and sports results) and three women who could barely take their eyes off each other.

Even though there was nowhere near enough time to download all our stories, and thank each other enough... we learned some amazing things about the power of the internet-born support relationship.

What has grown (for us), sustained by boards and Facebook, is a kind of acceptance that maybe we haven't defined before. It knows your backstory, it knows your child's quirks already, it needs no contextualising. Plus it sees the humour in ending a meal with syringes full of supplements and meds. It doesn't question, it doesn't judge, and it knows when to put Pixar on the TV.

Seriously, on Friday night, the boys were all over the shop, having played, eaten, played, cuddled the dog, played, hidden in corners, played, jumped on a crash mat (I want one of those so badly), and played some more. Then the great god Pixar appeared, and five boys and one dog instantly curled up on the couch. The three ASDians clutched their electronics (2 iPads and a DS) and the two stunning sibs hovered, gadget free, around the screen. It was magical. Like a movie. Maybe even a Pixar movie.

There's always a way to calm kids. No matter what their needs. It may not be what your mother did. It may not be what your friends do. But there is always a way.

And while kids are calm, parents can truly connect. And relax. And laugh, and laugh, and laugh.

That, in a sentence (and a couple of fractured phrases) is the biggest gift last weekend brought.

Who needs Santa, when you have Pixar and the internet?

Lessons learned from the island...

2011-11-14T09:10:00.001-08:00

This has been an extraordinary weekend.

In a beautiful misty beachside town, just south of San Francisco, I have learned a bunch of stuff about life and autism and life with autism. I'm taking these things away with the intention of using them as life principles, or t-shirt slogans, or both.

I'm going to try and summarise. Apologies if I make no sense. I will try and substitute with jokes. I'll fill in the chapters over the next couple of days, but for now, here's a beginning.

1. I Do Not Wrestle with People I Have Just Met
Billy met his twin. Actually, he met brothers who are his twin, if you were able to morph them both into one human (which would, just for the record, be an irresponsible misuse of excellentness... but I digress).

They look alike, they walk alike, they think alike, they create alike. They are not the same. They are kindred spirits. So much so, that as we mothers were talking, we would randomly drape a hand on the head of the child we believed to be our own, and have to do a double take to clock that we were patting someone else's child.

Within nano-seconds of meeting, the boys were playing like they'd known each other all their lives, and were completely neuro-typical. OK, so they were pelting each other with Angry Birds and Mario toys and making forts in the hotel beds... but it was energetic reciprocal play. Billy, being Billy was keen to move the play to some good old fashioned World Championship Wrestling. His twins were interested, but some boundaries were required. And these are they.

'I do not wrestle with people I have just met' said Billy's twin. 'I need to get to know you first. Do you play Mario?'

Can you conceive of a better way for children on the spectrum to approach new friendships?

Rule. Qualification. Strategy.

It's so perfect, it's got that iPod kind of feel to it. Be clear, be pleasant, be inclusive. Work within your realm of comfort. Do what you can to connect. Understand your boundaries. Read the room and work from there. Build a bridge, walk tentatively over it.

Needless to say, after a quick but detailed discussion of Mario, African animals and why we can hear a foghorn sound every 10-15 seconds... the boys were wrestling like champions. Then they shared movie projects and flip notes. They remained firm friends for the weekend. They vowed to stay in touch (though in their eight year old cuteness they had actually fallen asleep/stayed asleep and were unable to say goodbye in person).

They haven't questioned each other's differences. They only remember their connections.

I'll get on to the extraordinary mothers and grandmothers, the unspeakably beautiful adventuring, the wine, the police presence in the hay maze... all in the next few posts, whose working titles lurk below.

2. For the Love of Pixar
2. Banana Slugs Drink Water
3. The Choking Man
4. Hold My Jacket So I Can Wrestle
5. It's Never Over, Even When It's Over

But now, I need a quiet moment to dry my tears. I know, just like him, I have the ongoing support of my autism buddies... but saying goodbye to them this weekend has been a little more than my heart wants to take.

This weekend reminded me I am not alone, and yet it also showed me what I am missing by being so far away from these women. It's bittersweet. It's a gift. It's going to make me incredibly grateful for my friends at home, when I get back.

Also, probably a little more annoyingly needy than usual for a while. I apologise in advance, for the fact I may need to wrestle you or throw a couple of Angry Birds at you. I warned you, right?

Gosh it's been a long time!

2011-11-06T18:48:00.000-08:00

But I have an awesome excuse... we are on a brilliant adventure through California (and a bit of Arizona)!

I'm at Hopeful Parents today.

Click through for a taste of the adventure, and a big celebration.

PS. we signed a confidentiality agreement on the Human Rights Commission matter. Suffice to say, the outcome was very much to our satisfaction, and the things that happened to Billy are unlikely to happen again. Phew.

Hauling over the coals...

2011-10-24T23:30:00.000-07:00

Next week, when we launch on our California driving adventure, I hope to be free of the millstone we have been carrying for the last 12 months.

This millstone started growing in size about 18 months ago, when we realised all was not well in Billy's world. It took a bunch of steroids in December last year, when our family was shoved from our bumpy but rewarding road, to being on a dangerous, slippery slope.

Enter an express lesson in disability legislation, child protection legislation and the cost-benefit analysis that is a good strong legal team.

This week, the millstone will accompany us to the Australian Human Rights Commission, where it will (hopefully) be turned into dust.

In our journey as a family, we have made a transition between two worlds - from a world where philosophy principally drives action, to a world where necessity principally drives action.

Before Billy was diagnosed, my feet were firmly in the philosophy world. I believed in frameworks, and theories and scaffolds that drove my every decision. I had a rule for everything, and I surrounded myself with people who shared a similar vision. It worked well for me. I built a career being the 'Nanna', the fact checker, the danger police where kids, creativity and scripts were concerned. I believed what I knew, and I worked hard to keep on knowing more.

Then came autism. The thing that shook me out of my ideas about what kids 'should' be able to do, and into the world of what my child could/couldn't do. I couldn't recreate the 100 Acre Wood with my toddler, because he was sifting dirt between his fingers and struggling to poo. I couldn't let my child climb trees with abandon, because his gorgeous, dirty fingers didn't have the strength or dexterity to hold a toothpick, never mind his own weight.

I lifted my feet out of my fantastical pair of philosophical boots and placed them firmly on the ground.

I read, I asked, I cried, I tried. Together, as a family, we learned how to speak differently so our son could speak at all. We rebuilt our living space to extend our son's physical abilities. We opened our house to therapists and psychologists and early intervention workers and doctors and social workers and all the scrutiny they bring. We acquired a 'team' who are with us to this day, guiding us through each new gateway that life with autism builds in our path.

Every so often, I'd go back to the relics of my past, and lament the fact that the platitudes no longer applied to us. Who really cares about interactive drama experiences when your child can't tolerate a room full of kids, never mind the lights off and the contribution of a booming orchestra. 'He's behind you!' and 'I can't hear you' (the mainstays of kid's theatre) became cruel taunts, not invitations to participate.

I'd listen to radio interviews where people talked about parenting struggles and their dreams for their kids, and I'd think 'I wonder if I'll be trying to cajole my kid to play in the school band, cos right now, I'd settle for a valiant attempt at a three word sentence.'

I didn't lament the loss of my theoretical life, though, in fact quite the opposite. Like any parent, I'd been stripped bare by the refreshing reality of child-bearing and given the cold shower of mummy humility. It was no longer about me, it was about my son, my family and the journey we would all make into the future. Add the special needs aspect to our lives and the path looked more overgrown than before, but not impassable by any stretch of the imagination.

This life certainly beats the shit out of arguing for days about whether it was OK to waste food on kid's TV (though I did get quite good at that one... FWIW, the answer is always 'no'), especially because I was rapidly learning that food (the selection of, intolerance to, and subsequent rejection of) was going to be a central issue in our lives anyway. As would, speaking, writing, learning, independence, emotional stability, listening, walking etc etc etc.

Though our choices as parents will always reference the folk we once were, autism is a more powerful master. It dictates choices, it focusses decisions and it requires constant, dynamic attention.

Here's the thing.

I don't think autism is a burden for me, at all. I think it's a hell of a load for Billy to carry and he carries it with grace and the temperament of the Dalai Lama.

To be honest, I have to thank autism for lifting the theoretical veil off my life and forcing me to live in the here and the now. I'm also grateful for the people it has introduced me to, and the amazing capacity autism has for sending chills down the average human spine (good or bad, those chills remind you you're alive).

The burden, the actual palpable weight I carry is the weight of ignorance and intolerance. Each time someone says, 'He is good, for an autistic kid, isn't he?', add a rock. Each time a request for support is met with eyes that clearly have no intention to follow through, add a rock. Each child that is allowed to stare and laugh without an adult speaking compassionately to them about what Billy is doing, add a rock. Each time someone confects an opinion about us based on what they think they see (without checking the accuracy of those thoughts), add a big, fat boulder.

We all want the best for our kids, unless you have some vital part of your soul missing. After living the exposed and examined life we have lived (the same life anyone with a special needs child has lived), to have our motivations reported as questionable, is beyond offensive. More than that offence, it sets a dangerous precedent for other families of children with special needs.

We are fortunate that we can withstand scrutiny. We are not vulnerable. We have some financial capacity and a good grasp of the English language. We are fortunate we work in the media and so have a slightly heightened ability to source and decode information.

For the record, they call it 'special needs' for a reason. No matter how much we want him to, our son will not one day wake with the magical capacity to be like the 'other kids'. No matter how much belief we have in him (and trust me, the belief we have is not quantifiable), the autism will not disappear. He will gain skills and lose skills and heal some and regress some (as hard as that is to write). We will do nothing but the best we can, to make the road as pleasurable and possible for him as we can.

This is our reality. This is our life. We share it with our 'team' and with a legion of similar families. We do not want a medal, and we do not want judgement. We want questions. We want answers. We want respect for our difference as a family. We are an open book, because the choice to be anything else was taken away by three little letters - ASD.

I hope this week, when the dust settles, I hope that we see (once again) that disability laws exist for a reason, that due process is designed for fairness not for administrative neatness. I hope focus is placed on the idea that one should, as we have learned to, think before every single act.

If that is not possible, then the narrative we share with our son as he grows will be a really sobering one, and I don't think it's right to rest until it is altered. To send him forward into a world that says his unique needs come second to theory or philosophy, seems an abrogation of my job as his parent.

I still have my eye on my old fantastical boots, by the way. They are shiny, after all. They're in the shed with my high school report cards and my uni assignments... those things I valued before I stepped barefoot into the real world.

Maybe Billy can wear them one day when he makes his own 100 Acre Wood.

NB. I know this seems crazy to even say, but if you are feeling like commenting (which would be great), please respect that the matters I'm referring to in this post are legal in nature. I do not want to be in the business of defaming anyone or degrading anyone. It doesn't get us anywhere... and it's illegal.

I write scripts for a living...

2011-10-18T03:21:00.000-07:00

The irony of my career trajectory is not lost on me, now that we live in autism world.

Today Billy and I had a discussion about scripting. I say 'discussion' like it was a calm, rational, civilised moment. Actually, we were driving and I threatened to pull over and not move the car ever again if he did 'Super Why - the Swiss Family Robinson' one. more. time.

When Billy scripts, it's not just repeating. It's not just regurgitating. It's more like joyfully painstaking practice. It's seriously like rehearsal. He starts and stops, and re-starts again. He stutters, holds himself back, trying to integrate the sound effect and the spoken word in perfect timing. His face is in this beautiful, West-Side-Story-Somewhere kind of place, as he masters something that most of us don't even remember happening in the first place. Again, and again, and again.

We have limits on scripting, though they feel kind of arbitrary. They're mainly based around two things - the need to get something done (that scripting is stopping us from completing) or my fragile mental state (see the afore-mentioned pull over in the car moment). Sometimes they are based on the strange looks from Grandma, but I try to wash over those moments with facile statements like 'Ah, life with a photographic memory, eh?' because I do not want Billy to get the message that a strange look from someone is a reason to alter his nature.

I say 'nature' as opposed to behaviour for a good reason.

I seriously know less, in a concrete manner, about autism every day. It's like the more I read, the less I know. I'm a reverse wise old owl. I often feel like we are living in a world of 'outside-in' interpretations of autism (ie. the behaviour maketh the man). There's a plethora of mainstream research seemingly determined to reinforce the idea that if you can change the autistic behaviour you have succeeded, somehow, in changing the child. While I would do anything to make Billy's life easier, I really struggle with the idea that making him behave like the other kids is the aim.

I'd love him to be not sick a lot. I'd love him to have the ability to eat anything he wants and still have his body function. I'd love a couple of hours of non-YouTube related stillness or the ability to hold a pencil without shaking with exhaustion. I would give up everything I value for a calm, functioning gastrointestinal tract and a lack of auto-immune dysfunction.

Do I care about the lack of desire for sleep-overs or team sport... nope. Not a bit. Couldn't give a crap. Why? Because the 'just like the other kids' idea seems as trivial to me in relation to Billy as it did in relation to me when I was a kid.

Billy's scripting drives me bananas some days. It never drives him bananas. It soothes him, and entertains him and engages him like YouTube can.

I wonder a lot about what he can control and what he cannot. I try and think what boundaries I would set if he was NT and whether I should apply those same boundaries given that he is not. Some days I write him a pretty blank cheque for his behaviour, and on other days, I want to write a ransom note.

My frustration, though, is just that. MY frustration. It cannot be my child's fault that I am irritated by some of the behavioural manifestations of his disability. Never. Ever. Nor can anyone else in his life claim that right. Not his family, not his team, not some random grumpy old lady at the shops who thinks he should be seen and not heard.

We are grateful that Billy has the emergent ability to reflect on his own behaviour. We have some breathing room in terms of the sort of behaviour management most kids have to handle. He is generally polite, generally keeps his underpants in the right place, generally gets that Grandma doesn't want to hear those special four letter words you learn from video game play-throughs on YouTube.

We can see that random tears over things he cannot control, frustration that his pleasant walk down the street has been interrupted by a barking dog, deep fear that the baby at the next table might cry... these reactions and their associated behaviours are beyond his control. These are things we need to avoid, manage or suck up and live through.

Maybe that should have been the title for this post - avoid it, manage it or suck it up.

Today as I gripped the steering wheel in that nasty white-knuckle way that the child me observed in grown-ups many moons ago, I wonder was I avoiding, managing or sucking up the real issue.

Super Why is not so bad. Self-calming is a legitimate and valuable tool in the life of a boy on the autism spectrum. The fact that it drives me nuts is a timely reminder of the lot of an autism parent.

Quick trip back in time, to illustrate my point.

I have the great privilege of knowing some beautiful writers, especially songwriters. A lovely old friend wrote a song once, quoting a couple of bits of my drunken conversation. You can find the relevant pearl of twenty-something wisdom at the 1:48ish mark in this video, and it goes like this (for those with time, bandwidth or don't care that much issues): Accept all the things I don't want to accept, and believe in the things that are true.

Some days, in this autism game, it helps to lean on the clarity our twenty-something drunk selves had...

I accept that my son is different, unique, strange (depending on the day) and I believe he has every right to be just that - everyday. I will smile proudly, no matter what. I will speak calmly no matter what (OK, not if he is heading towards a four lane highway or a growly dog, I'll revise this one). I will allow him to be himself, no matter how that looks to the uninitiated.

And I will let him repeat Super Why. Sometimes. Quietly.

I may even keep on driving the car while he does it.

Hopeful Parents day...

2011-10-06T19:14:00.000-07:00

I am at Hopeful Parents today, frantically packing electronic gadgets in preparation for our big adventure.

Click through if you want!

A new world record...?

2011-10-01T05:38:00.000-07:00

I think our family might actually win a world record.

I could be wrong, I'm not certain, but I believe we might be the family that has been to more zoos, more times than any other family. Except maybe the Irwin family, but I actually think we might give even them a run for their money.

We have been (repeatedly) to all the zoos I can think of in our State and the one to the north of us. We are heading to California in a month or so, with an itinerary planned around zoos.

At least twice a week, we are looking at animals in some kind of animal park or zoo. When we are not at a zoo, we are reading about animals, talking about animals, playing with animals or (my personal favourite at the moment) curled up in bed watching David Attenborough documentaries on the iPad.

We do engage with other things (that pesky mater of schoolwork, Thomas and his friends are still around, there's the countdown to our trip to be considered) but we frame our life around animals at the moment.

You may think I'm crazy. After all, the aim is to have a child that's as well rounded as possible, right? We should be encouraging our child to touch on as many subject areas as possible, right?

From my perch, high atop autism world, I say... yeah, right.

In the most loving, least cynical way... yeah, right.

I have mixed feelings about the issue of neurodiversity. I'm all about acceptance. I'm all about the world taking my son, and everyone else, for exactly who they are. And, at the same time, I am pitching for him to be able to live in the world in as functional way as he can.

With that in mind, my devious master plan for Billy is to use his loves and abilities (perseverations, if you will) to gaffer tape him to the world in a practical way.

When he was very young, we sucked the marrow out of every last minute of Thomas the Tank Engine. We learned colours and numbers. We developed language, we considered emotions, we made models and food and toileting all Thomas related. We travelled to see Thomas, we purchased the Island of Sodor over and over and over, we read and watched and talked Thomas. Thomas came with us to scary places. Thomas curled up in bed in hospitals. Thomas smoothed the way into the edges of street parties and restaurants.

And with Thomas in hand, we managed to kick start therapy, start pre-school and school, slowly take steps into serious kid culture like movies and birthday parties. Big steps... huge steps that would have been so much huger without our six wheeled friends.

The great thing about trains is that they brought us in contact with other kids. We stood near them at train tables in toy shops. We rode on the back of trains with them. We saw a couple at train shows (in between the adult collectors and trainspotters).

Now that Billy is almost eight (aaaah), animals have edged their way in front of the engines. So instead of smoothing our journey into the world with songs about useful engines, we're carrying a well thumbed copy of 'What Bird is That?' and making documentaries with the video camera on my iPhone.

Animals have (similarly) brought us into the world of children in a very useful way. In order to see the gorillas at the zoo (for example), one has to stand quite close to quite a few children. The zoo is generally full of children, of various ages, in various moods, all with very little desire to get up in Billy's face and drive him out of his comfort zone.

Zoos have provided learning, and comfort and joy to all of us. And when you are onto a good thing, go for it, I say. In fact, in autism world, when you are onto a good thing, you kind of don't have much of a choice.

Hence, the world record for zoo attendance. And a minor record in Thomas engine ownership (I believe we may have more Percy the green engine toys than anyone on planet earth).

In Billy's life, I hope we set more records. I'm pretty sure we will. I feel this because whatever our boy does, he does with passion and commitment. Like many young autistic kids, he does not waste his time with stuff that doesn't set his brain on fire. When he likes something, he loves it. He collects it, he owns it, he inhabits it.

We are fortunate he does not love farm machinery or drum kits or string, as some kids we know do. We feel deeply fortunate he does not love violent video games or superheroes. We see that he gets both enjoyment and learning from the things he loves, and so we support him and use those things as developmental leverage. Inside-out, kid-first, Billy-led development.

Many years ago, when we could see that our infant son had a spectacular memory for letters, yet he had lost his ability to use words, doctors and therapists told us he had 'splinter skills'. They said, 'do not be excited that he can locate letters accurately. It's a splinter skill. Totally useless.' Their advice didn't seem right, and it didn't seem fair.

I can honestly say it was not good advice. He may have been displaying splinter skills (whatever they are), but they were useful skills. We took his ability with letter recognition, and worked hard to translate it into a working knowledge of phonics. We matched the letters to trains, and the sounds to songs and subtitles on DVDs. We immersed ourselves in his interests and abilities, and it paid off in spades.

It continues to pay off, every day.

Through animals, we learn about taxonomy, hierarchy, biology, mathematics. In zoos, we consider ecology and people management and the vast overpricing of snack food. We observe the way animals work, the way public space operates and the way people make up crap when they are trying to impress their children with animal 'knowledge'.

In paying heed to Billy's passions, we legitimise his life journey.

I do not believe any child should be forced through arbitrary hoops, simply because history has laid those hoops for others. When autism is added to the picture, the wisdom of the arbitrary hoops is even less obvious. When you see that your child is not simply bored by the expectations of the system, but they are also threatened, bamboozled, disregarded... making a different choice doesn't seem such a big leap.

It's not just about schooling, it's about living.

We have no political agenda leading the decisions we make about our child's life. We have only love. We are not trying to make a point, we are trying to stay balanced. We are not trying to challenge anyone else, we are simply trying to keep ourselves happy.

And if finding happiness also secures a solid future, and a couple of random world records, so be it.

And if I can get myself some recognition for my encyclopaedic knowledge of potato chips and habits of the lesser Kardashians, the world order will be righted.

Splinter skills. Pffft.

Because it's odd...

2011-09-24T17:51:00.000-07:00

There have been a couple of times this week when my parenting brain has slowed to a snail's pace. This is not unusual, sadly, but it's got me thinking about the pointy end of meaning - the messages we want to pass on to our children.

When I was a kid, I heard strange things on TV ('wait till your father gets home!') and I read confusingly semi-inspirational things on greeting cards ('your potential is guided by angels') and I made up my own mantras ('keep your expectations low, so you'll generally be surprised' was one of my favourites).

Through a sea of nonsense, a bunch of things remained relatively meaningful.

I do think, if you look at the 7 year old, you get a fair idea who the adult will be. I do think finding your passion is a good thing, even better if you can finagle a way to use it to make a career. I suspect drinking a lot of water and eating as many green things as possible also has some benefit.

I looked to my parents, my siblings and my mentors for these gems as I grew up. More often than not, I found them on TV, in magazines and increasingly online.

It makes me wonder what life defining platitudes Billy will take into adulthood.

Last night, at a family dinner, he did a fine performance of a phone company ad. 'Don't just change your phone, change your phone company' is etched in vocally nuanced perfection in his sub-conscious, as are the remaining scripts from the ten other ads in the campaign. Including a rousing rendition of 'Give Me the Simple Life'. I hope that will mean something when he is old enough to actually need a phone.

He has developed the miraculous skill of translating kids' tv shows from one accent to another. So, although he has not left Australian shores (Yet. Give us a month and all that will change!), he can do a perfect Charlie and Lola in both English and American accents. He takes Super Y, and makes it sound like the British Royal Family doing their literacy homework. Should he become a super-spy or a voice over guy (both are clearly on the cards), these things will no doubt be handy.

Billy has also discovered a talent for finding YouTube clips that innocently depict kids video games, but are narrated by bored teenagers with a proclivity for profanity. We are very much enjoying the fact that the presence of Buzz Lightyear or Woody now has the capacity to bring forth a string of F, A and C words. Not. Having said that, I am not averse to a bit of swearing myself (don't tell my mother), so I guess some time in his life, these words will come in somehow useful.

On a slightly more serious note, we had a sobering chat this week. It involved the aforementioned phone ads, other kids and the word 'odd'.

I know we are not alone in scripting world, although I think we may be somewhere in the upper echelons of government. Billy is the king of scripting. He learns and recalls things with remarkable accuracy. It can be TV shows, movies, songs or, most recently, favoured advertisements.

I am cursing one of our major telecommunications companies, for a clever campaign that has been running for a long time featuring African animals. You may recall Billy has a real affinity with African animals. Now he has an affinity with the phone company that makes money out of African animals. He records the ads on TV, he watches them on YouTube, he finds them in newspapers and magazines. And... he repeats them (like he did last night at our family dinner).

He is charming and cute (and very cheeky, as we have talked a lot about limiting the perseveration a little) as he masters every sound, vocalisation and dramatic beat of these advertisements. He knows it will get a reaction, but more he seems genuinely thrilled by his mastery.

In a safe audience (like family dinner), he gets a round of applause and a few befuzzled faces ('what kind of child recreates TV ads?', the older folk think to themselves). Among his NT peers, the reaction is quite different, and often involves some of the words Billy has only heard on YouTube Toy Story play throughs.

So, what's a mother to do? Well, in a scene reminiscent of 'THE' talk where many parents get themselves all wrapped up in knots trying to explain where babies come from without actually mentioning that it involves sex, which is not yucky, it's quite fun, even though it doesn't seem like it now, but you shouldn't think about that now because you are only a child, aaaah, why did I start this conversation... I tried to explain why it's probably not a good idea to do Optus ads around other kids.

I started with an affirmation of how very clever he is to be able to do such good voices. I extend to mentioning that Voice Over Guy is a very well paid and respected profession. I'm doing quite well, I think to myself, as I start in on the downsides of repeating TV ads.

Do you hear other people repeating Optus ads? I ask. No, Billy replies. As though he actually cares or notices for one nano-second what other people choose to do. Do you think other people want to hear Optus ads repeated a lot? I try again. Billy thinks about this one and replies, Yes. They see them on TV and they like them.

I think about this one. He's got me. That's kind of the point of advertising. I regroup.

When you are around other kids, maybe you should try not to repeat things. OK, says Billy. Then he asks, why? (I waited a long time for this word to be used. I should be happy. I am not.) Why? Um, I say (desperately trying to some up with a good, solid, meaningful answer that will transcend generations and become the title of my next blog entry)... because it's odd.

That's all I've got? That's the best I can do? Tell my son that something as natural to him as choosing his finger over a tissue to clear out nose boogies is 'odd'.

I tried to say 'odd' like it's a good thing, because I genuinely think it is. But I want him to understand that it loses its charm fairly quickly when all the other boys are playing Star Wars and you are singing the theme from a phone ad.

Like most kids, Billy gave me that 'thanks for sharing' half hug and ran off to learn some more swears off the computer.

Which left me wondering.

Some autistic people have a lot of social understanding. Some do not. Billy is somewhere in the middle. He wants to be out in the world, but he does not have a keen sense of curtailing his own activity to suit the goings on around him. Fortuitously, he is generally a calm, observe-y kind of child. It's just that what he is learning from his observation is the subtle nuances of the soundscape, not which fork everyone is choosing to use.

I'd love for him to be able to share his inner 'odd' with confidence, with the hope that it would be received with an open heart. I suspect that hope has as much chance of being met (the older he gets) as my hope that I will drop a tidy ten kilos without exercise or lettuce.

I don't imagine I am helping much with my ham fisted attempts at explaining the social consequences of Optus ad repeating. I may, instead, just join in. The jingle is catchy.

Or I would, if he would let anyone sing around him. That is a whole other story that makes me want to swear like Buzz Lightyear.

Sharks can bite me...

2011-09-20T02:18:00.000-07:00

This is a cautionary tale.

It involves drugs, sharks and anxiety. Three things that kind of sit well in a sentence together, but are slowly making our lives unpleasant-er than they were before.

And I tell it in case someone else is facing a similar situation and is wondering if there's any reliable evidence of their fears. I'm not a big sample, but I am not making anything up. Which may (or may not) help.

I will preface this take with a tiny, contextualising kind of timeline:
- Billy gets sick all the time
- Billy's digestive system starts to shut down
- We contemplate buying shares in a local underpants manufacturer.
- Billy has breath that could wither a cactus
- Mummy takes Billy to a well respected paediatric gastroenterologist
- Dr Poo is full of... advice, including lots of drug recommendations
- Mummy feels uncomfortable about drugs (see: Billy's life) but accepts Dr Poo knows poo
- Drugs fix poo and reflux
- Billy starts high pitched screaming at passing flies, animals and 'scary' noises.
- Dr Poo says 'here, have anti-anxiety drug chaser for gut drugs'
- Mummy makes effigy of Dr Poo and feeds it drugs
- Billy reverts to natural supplements, halts normal digestion and hysterically refuses to walk past a statue of a shark at the Sydney Aquarium. Ever. Even after Mummy paid $170 renewing annual tickets to the aquarium. An aquarium we have been to a bazillion times before. Also continues random screaming at imagined irritants and chooses to fall asleep with his hands, three pillows and a set of noise cancelling headphones over his ears.

End timeline, for fear of Mummy committing actual crime on the person of Dr Poo.

There are some of autism's joys we have been spared (in the past). Billy is not prone to self harm. Billy has not developed an interest in making art work out of his poo (perhaps because said poo is quite hard to come by). Billy is not a meltdown kid.

Actually, Billy was not a meltdown kid.

All through his life, as long as either Mummy or Daddy (preferably both) was close by, all was well at Camp Billy. We could avert crisis, we could anticipate disaster, we could talk him down from the edge of anything. As a result, we've been able to live a fairly normal life. I say normal, but I mean, it works for us. We have holidays. We have adventures. We have a lot of laughs. It's not a sit-com life (though it may morph in a Big Bang Theory kind of direction sometimes) but it works for us.

We have observed along the way that Billy has odd reactions to medicines, environmental chemicals and some foods. So, we have adapted our lives to those sensitivities.

This has included being very selective about antibiotics, being oddly entranced by the fact that cortico-steriods turn him almost netrotypical, taking all petrochemicals and bleaches out of contact with him at home, cutting out dairy and junk, eating organic and ceasing vaccination at 3 years. We have done these things in consultation with the relevant professionals (some medical) who have been helping us understand how the Billy organism functions.

Nothing revolutionary there. It's a route many families with kids with autism and other chronic illnesses have taken. Gets a few scathing remarks from Grandma as she clocks my expression as she sprays Christmas dinner with fly spray (hey, the weather is hot here in December, give her a break), but a bit of subtle under table feeding to the dog, and we're all even (except for her dog, but he lives with it all the time so I figure I'm not doing any extra harm).

So, when circumstances sent us into homeschooling, and gave us the opportunity to solve some medical mysteries (see: hard to come by poo, recurrent illness and the spooky ability to touch the back of his wrist with the fingers from the same hand) we jumped at the chance to meet some new doctors.

Billy's paediatrician, a grumpy and knowledgeable older man recommeded Dr Poo, and said he sees most of Sydney's autistic kids. Sounding good so far. Dr Poo is a smooth, professional with a set of tricks designed to disarm mothers just long enough to trust his cookie cutter approach to initial GI intervention.

This is where the whole issue of reliability in medicine gets really murky to me.

Reliability means tried and trusted. It means well tested and researched. It means it has 'worked' for lots and lots of people. All good, I hear myself think. I hear words like 'safe' and 'no side effects' and I think, 'Relax, Foley. It's OK.' Dr Poo may have even used similar words, though of course, he substituted the word 'Mum' for 'Foley' which is affirming my child's individuality in a reassuring way. Not.

Cut to the chase, and the administration of a PPI called Somac (to handle the reflux that resulted from the hard to come by poo) may have caused physical (non infection related cyclic vomiting episodes) and mental (chronic anxiety) side effects in Billy. Either that or the use of osmotic laxatives may have caused these things, because they did not exist before the administration of these drugs.

We have stopped the reflux drugs. We have stopped the laxatives, though occasionally they are necessary in combination with the natural supplements (otherwise the pain and the sacrifices to the great god of underpants begin again). The vomiting episodes have ceased.

The anxiety has not. It may be slightly less acute, but it is no less insidious. I have no idea whether it is possible to retreat from this. I don't know if permanent 'damage' has been effected, or if anxiety is a kind of door a kid walks through and then has to be coaxed back over his lifetime. I wish I knew. More than that, I wish the damn doctors knew.

Because they were quite happy to assure me of the safety of the drugs. They were insistent we had nothing to worry about. They were wrong.

As were the doctors who said continued vaccination was safe after the tongue swelling incident at his 8 week vaccinations, and the ones who said getting measles from the MMR was just fine, and the naturopathic ones who refuted the neurologist's claim that a homeopathic detox could have contributed to Billy's Transverse Myelitis.

You'd think I would have learned. I thought I had. Problem is, there's no reliable evidence backing up what I thought I'd learned, so I have no defence when doctors (other parents, therapists, grandmothers) insist that some drug or other would be safe.

It's like a game of 'There was an Old Lady who Swallowed a Fly', except with a real live child. I don't like the end of that song much at all, so after experiencing the ingesting of a metaphorical fly, a spider, a bird and half a cat... I'm not playing anymore.

While we retreat to the world of Dr Light Bottom (see my last entry) and his magical, mystical world of genetics, Billy and I will endeavour to defeat the scary shark statue.

Without drugs. Without (hopefully, eventually, somehow) anxiety. With organic chocolate (for me at least).

Doctors are people too...

2011-09-16T02:59:00.000-07:00

... which is why I find it so odd that so many of them are allowed to be so robotic in their professional lives.

I get they need to remain detached. I get they need to be analytical. I don't get their reluctance to see a bigger picture than the one that is in front of them right at that minute.

Last night I stayed up very late making a spreadsheet containing all the pathology results we have ever received about Billy - blood, urine, spinal fluid, MRI, CT scans, nerve conduction studies, gut x-rays, renal x-rays, pithy anecdotes about the inside of his duodenum.

It was an interesting process, not least because I am not (repeat not) a systematic thinker. My idea of a system is a mud map. Numbers, charts and formulae are not usually my cosy bed buddies.

But they were last night.

And though there were interesting patterns (I coloured high results blue and low results red, just to amuse myself), I am obviously still no closer to understanding much at all about Billy's ongoing health. I finished my task, with a growing sense of grumpiness.

No, I hear you say. You? Grumpy? Never!

I wish I was citing the opening scene of the movie of my life, where a lightbulb (rising sun, angler fish, something bright and eye opening) appears reflected in my computer-screen-fatigued eyeballs as I finally crack the Billy code. Alas, it's more like a soap opera, where an ill-prepared, scruffy looking me walks out of yet another doctor's office clutching a soggy tissue and glaring at the receptionist for just a beat too long.

There's another light at the end of the tunnel, though. I'm hoping it is emanating from the nether regions of the geneticist we are seeing next week. I hope he's not feeling too much pressure. Even more, I'm hoping he doesn't take one look at my work of Excel artistry and decide I'm a (completely) crazy woman.

This goes to a wider issue in adult life, that I wish I'd never started to examine.

I grew up, for better or for worse, thinking that there were a few pillars of society that were constant and true. I hadn't really named them out loud, but now that the pillars are crumbling and I feel like a frightened 8 year old, I'm thinking they are - the health profession, law enforcement, the education system and perhaps politics. Religion, was easier to de-frock, when at quite a young age the nuns thought hitting me was a better option that answering my honest question about the chronology involving Jesus and the dinosaurs.

Police are still kind of OK in my book. I'm skeptical but feel we're likely to be in a better state than we were in Joh's Queensland when I was a kid, so you know... Also I don't actually do anything that would raise their ire, or challenge their professional integrity. We kind of leave each other alone.

Unfortunately, I can't do the same with pollies, doctors or teachers.

I think the Australian government (on both sides) are behaving like over-privileged children at a birthday party. Doctors I've dealt with a number of times and you are probably well sick of hearing it. And teachers...? Well, this week, teachers redeemed themselves just a tiny bit.

We had Billy's annual review at his school - an urban base school for children who can't attend school for a variety of reasons (illness, remoteness or a job in the movie industry... I know, random, right?) I was fully expecting a rap over the knuckles for not achieving enough, or filling out forms wrongly or something (gun shy? me?) and what I received was something very, very different.

I met a group of educators with passion, compassion and insight. They knew their business very well. They understood the pressures on an autistic child, learning wise. They had read their files. They had come prepared with ideas and resources.

The overwhelming message I took away was inspiring - a child with challenges should not be challenged by the education system as well. They should be inspired, supported and buoyed by the possibilities of learning.

Now, how many folk with autistic children would like to hear that little gem from their child's school...?

We can argue the relative merits of homeschooling another day, but for now, I'm loving educators that can come up with stuff like that.

It comes in a context of really shabby recent educational experiences for us. So seriously, they could have said, 'How's your day been?' and I would have burst into tears and kissed them. But these folk have gone a long way to restoring some faith.

Now... as long as I can get the doctors to agree, we can continue with this method of learning for another year. I am hoping, Dr Light Bottom (the geneticist), Dr Poo (though he is on my brown list right now) or the grumpy old paediatrician will sign the damn form. If they won't, I'm breaking out the snotty tissues and the piercing stares again.

I want to have faith. I want to believe. Like Bob Geldof says, I'd feel quite relieved if I could lose myself in irrational assurance that everything was going to be just fine.

But autism, growing up, being stabbed in the eye by Billy's old school... those things wore my love of pixie dust down to just about zero. Now, I'm working on the principle, that if you look me in the eye and admit we could all do better, I'm on your side.

So, Dr Light Bottom, are you ready for us? If I could ask a favour in advance, it would be... please, switch off your interface, and open your mind. I promise not to shake your hand and leave a damp tissue residue...

I'm trying my best (though I promise to take your advice on how to do better).

Vomit in my mindspace...

2011-09-12T05:16:00.000-07:00

This year has been full of examination for us. Lots of folk peering at, on or near Billy and sharing what they see. Doctors of various kinds, psychologists, therapists, teachers... the whole she-bang.

It's been interesting, eye opening, confronting, sobering, hilarious, frightening... I could basically take bites out of a thesaurus and make spit balls full of reflections on what we've learned.

And here's where we are.

Billy is awesome. He's funny and clever and full of enthusiasm and joy. He loves what he loves and he's blessed to be able to express what he does not love (in no uncertain terms). He tries hard, he is brave even when his best instincts are telling him to go hide under the bed.

And... as opposed to 'but' (because that's a negative mindspace, right?)... the promise of Early Intervention (ie. that your child might just lose the dx, might be imperceptible from his NT peers, could manage just fine with a bit of understanding) has not been fulfilled in our case. I'd say it hasn't been fulfilled in most cases, but that's a discussion for further down the page.

Perhaps we could have worked harder. Perhaps we could have pushed our toddler out of his comfort zone and forced him into therapy or groups we weren't happy with. Perhaps, perhaps, perhaps. (I feel a song coming on...)

The reality, looking at Billy and his cohort of EI peers, is that while EI has been really useful (in the same way that pre-school is useful in general school readiness for an NT kid), it has served as a nice little bridge through the troubled waters of diagnosis and school beginning. It introduced us to lovely friends who share the journey. It gave me an unhealthy attachment to instant coffee and homemade cake.

Early Intervention in Australia is not quite the same system as it is in the US, and seems like it might be similar to what happens in the UK. You get what you get. You find it yourself. You get what you pay for. If you are tremendously lucky (ie. live in a well resourced area, happen upon a service with good people in it, have a tidy lottery win around the same time the A word raises its pretty head) you get good services. If you are the rest of us, you turn up and grit your teeth as much as you learn anything.

People who, since their recent employment, have learned an awful lot about autism invite you to workshops about 'special needs parenting' (which always made me wonder if I needed a diagnosis as well) and you quickly discover that the oestrogen telegraph is the most reliable source of practical information.

From EI, you make your own decisions about what next, and it's trial and error with therapists, services, support groups etc etc. Some make change, some make tears, some make giant holes in your wallet (or mortgage, depending on your choices).

Then you find a pre-school, a school, a small space in your kitchen and you begin the process of formal education.

By this point, you should (under the promises of Early Intervention and government funding) have seen the autism evaporate into a mirage of friends, birthday parties and the eternal soccer or ballet dilemma of the contemporary parent.

Or not.

Billy will be eight in November, and despite years of therapy, a shedload of supplements, a life with the least amount of stress possible and a style of parenting that has seen us both hanging out like dogs balls among more conservative folk... he's still autistic.

In fact, he's probably a bit more autistic (if that's possible) than he was when he was we started this journey. I say this because, though he has developed language (which we value greatly) and he has matured (for which we are grateful) it is very apparent that he is not in control of many faculties his peers have well and truly mastered. He is not well, health wise. He also has behaviours that, to put it mildly, are not even contemplated by NT kids.

Though we all may wish otherwise, he scripts endlessly, drawing his inspiration from absolutely everything he has ever heard. He grimaces and jerks his arms and upper body in a manner which can only be described (politely) as uncontrolled. He cries when the dog barks or someone coughs and this can start when he's asleep. He has to move his body every 2.3 seconds. He can concentrate for hours on Youtube and Minecraft, yet mere nanoseconds on handwriting or what someone else is saying. His IQ is in the intellectually delayed range, but he can flummox much taller folk in discussion about his favourite things, and his school work is at age level (now that we homeschool). I could go on and on (as I often do... wonder where Billy got that one from?)

The point of the game is that the autism has not gone away. It is not imperceptible. It is, in fact, markedly perceptible.

And here's the trap for new players.

Because we have been given a free ticket to the road less travelled, we are not too perturbed by the status quo. It doesn't change anything at all that Billy hasn't morphed into a repeat-free member of the First Fifteen. We're doing OK. In fact, a few rough medical experiences aside, we're mostly having fun.

But I see very clearly, that there are other families in a very different frame of mind. Like us, the first years of schooling have been sobering, dramatic and sometimes unpleasant. Like us, parent and child alike are struggling with all sorts of things - perceptions, sliding outcomes, morphing expectations, age equivalencies, resource availability, benchmarks and a bunch of other charming bits and pieces. But it's not even remotely fun.

Outside the autism community, people are struggling to manage their child and inside the autism community people are wondering why it all seems so hard. I'm guessing one of the reasons it's hard because someone somewhere said this disorder would probably disappear. And it didn't. Someone somewhere placed a statistically (and medically) improbable goal in their heads and they set their noses to the grindstone in order to achieve that goal. And it didn't pan out like they imagined.

This is not about good parenting or bad parenting. It's not about doing enough, or not doing enough. It's about life, and time and things just being what they are. It's about how much it hurts when you see your child struggle and you can't see an end to that struggle. It's about losing faith in a system that doesn't seem to understand you, never mind your child.

I guess it's about acceptance. Or not.

This is my kid. Warts and all. Grimaces and all. Violence, self harm, anxiety, ill-health, hoarding, food limiting, TV repeating, compulsive testicle tickling, not wanting to walk through certain doorways and all. Whatever you got, you got. Whoever they are, they are.

For those of us in the world of special needs, this whole game is often cyclic. Hit a wall, recoil, get angry, gather the troops and try a new tactic. The cycle is short for some of us, slightly longer for others and seemingly endless for an unlucky few. There are also those for whom the promises are fulfilled - a massive change, a loss of quantifiable behaviours, a vast improvement in health, and it is this what many of us hope is the way of the future.

But for now, we have the now. We have our kids. We have each other. We have a fight on our hands to find appropriate health and education services. We have an ever morphing picture of the future to taunt ourselves with.

As exhausting as it seems to keep moving forward, it seems even less fun to slide back. We have learned too much to stop now.

The roller coaster is in full forward mode. We've got our tickets. We're strapped in. No point in trying to send frantic signals to the operator now. May as well accept the possibility of a bit of vomiting, along with a few cool upside-down twists and turns.

I just hope no-one hurls too close to me. I can take autism, chuck can be someone else's department.

I'm at Hopeful Parents...

2011-09-06T03:13:00.000-07:00

Reflecting on the sort of parent I have become, and how deep is the ocean.

Click through for a look around.

Calling Dr House...

2011-08-31T02:54:00.000-07:00

I have come to realise that our journey through autism world has led me to have relationships with doctors in the same way other women have relationships with actual, available quasi-compatible men.

Today, again, I collected photocopies of pathology results from a doctor, in much the same way I gathered a toothbrush, spare undies and that ugly emergency work outfit from past ex's bedrooms and walked away. I made an appointment to catch up in the new year, but we both know we will have moved on by then.

Dr Poo is not the first doctor I have had this relationship with, and I'm sure he won't be the last. It's just that we need different things. It's just that we don't have the same ideas about the future. It's not him, it's me. Well, it's my son, but that's a whole other tangent.

Dr Poo is a fine man. Let me begin by saying that. And he's a fine doctor too, no doubt about it. But he understands autism like I understand The Lord of the Rings. Not at all, for those in the cheap seats, with a vague sense of curious revulsion (Gollum) and confusion (all the other freaking characters). And as it happens, I have a similar level of medical knowledge, so I have no cogent comebacks to his doctoral pronouncements.

He proudly poked Billy's stomach today and pronounced him 'emptier than ever'. Billy, while enduring said poking, announced 'That tickles!' (a script from Roary the Racing Car). Dr Poo responded with, 'How fantastic! It's not hurting him at all!'

No, it's not hurting him. Because nothing hurts him, nothing ever has. Or at least, nothing did hurt him much until we started sensory integration therapy.

I wonder, Dr Poo, if you've met autism, or indeed Billy's individual brand of it. He does not feel pain like we do. He never has. In fact, many sensory receptions and expressions are unique. He's the one who has endured reflux that would knock an adult down, without complaint, remember? He's the one who has had a hernia since birth, and no one knew because he didn't complain (in the traditional sense). He's the one who spends half his life lying with his tummy stretched over the arm of the couch, the edge of the trampoline, the pile of pillows he's made on his bed attempting to relieve the discomfort he registers. He's the seven year old who has been vomiting since you put him on laxatives and reflux drugs.

He's my son, and I'm wondering if you have listened to anything I've said in the last four months.

Dr Poo's response to my barrage of questions (actually just the word 'why' leading off an infinite number of questions made up of words I have already forgotten) was to distance himself and say, 'I don't know. I really don't know. I don't know the answers to the questions you are asking me (the flashbacks to my twenties relationships with tortured boys with guitars are intense right now). But I'm sure there's a man (sorry, doctor) out there who does know those answers. I just cannot remember his name right now, but I will, and... I'll call you. Yes, I'll call you. Soon. I really will.

In all seriousness, Dr Poo acknowledged that Billy is not well. He acknowledged that Billy is less well now than when we first came to see him. We had a child that could not poo appropriately, now we have a highly anxious, cyclic vomiter who still poops pebbles without drugs.

Dr Poo acknowledged that he does not know why. We have the same aim - a healthy (i.e. pooping and not refluxing child) but we have different thoughts about how to get there.

I, for example, do not want to contemplate putting my 7 year old on anti-anxiety medication when he did not suffer from anxiety until we started giving him chemical laxatives and PPIs. Dr Poo thinks it might be a good idea. I have no interest in giving my 7 year old drugs clonodine on the off chance his neurotransmitters are off kilter, without testing said neurotransmitters first. Dr Poo thinks it might not be a bad idea. In fact, last time I looked, we went to Dr Poo to address the fact that our child was pooping his pants with something approximating gay abandon. Suddenly I'm supposed to contemplating giving my child anti-depressants and blood pressure meds to get him pooping in the toilet.

Um... no.

Seriously, it's not you, it's me, Dr Poo. No more.

Dr Poo did suggest we go to a geneticist. And I agree, we should. I have a feeling that geneticists are the folk that people who have no answers are sent to, and I pity the fool we will see, to be honest. I'm hoping this guy (as I know he is male) will have the people skills of Oprah and Stephanie Dowrick combined, because he's gonna need them.

Every single diagnostic physician we have been to has said the same thing about Billy. One word - atypical. Yeah, autism, but atypical. Yeah, hyperacusis but waaaay atypical. Yup, that's Transverse Myelitis but it's definitely atypical. Yup, this kid has gut issues, but they are quite atypical.

We have some clues - high iron/ferretin/b12 levels despite zero iron intake in the diet and no evidence of haemachromatosis, high bicarb levels, odd IgA and IgG readings but no coeliac evidence, declining Vitamin D without any change in activity or diet, hyper mobility in the extremities, high palate, crowded small teeth, soft nails, bilateral ptosis, positive Gorlin sign, silent reflux, low motility, hyper intensity in the outer surface of the brain in his MRI, tiny cerebellar cyst, odd blood sugar behaviour, keratosis pilaris or some odd lumpy skin on the knees and ears, bizarre reactions to vaccines/drugs/homeopathics, fine and gross motor delays, myoclinic jerks, intense hyperacusis to vocal sounds with possible canal dehiscence, oh... and autism.

But they are just clues. And I am not Dr Poo, or any other bodily fluid Dr. I am a kids TV writer, and a sightly crap one at that (more about that in another entry).

And so we return to my original plea.

Dr House, if you exist, in real life, particularly in Australia (but we're not fussy)... could you help out? Are we ringing any bells? Are we singing your song? Are we tickling your ivories? (or is it tinkling your ivories...?)

I would like my child to be able to take a dump consciously and healthily without drugs. I would like my child to not freak out when his dog barks or someone coughs. I would like my child to be safe and able to learn at school.

Or if that's not possible, a gigantic lottery win would be awesome, so we can fully employ his wonderful tutor and settle into a counterculture existence in the centre of Australia's biggest city.

Or if that's not possible, please send giant dragons to spew fire at the hair of intolerant politicians and shock jocks for my amusement.

Hey, a girl's gotta be able to dream, right?

Can you live with half a heart...?

2011-08-28T17:40:00.000-07:00

This week Billy and I cried together. When I say 'cried' I mean streaming floods of ugly face tears, both of us. When I say 'together', I want to start crying again.

I'll delve into the why of the tears in a minute, but I want to quickly divert into the togetherness part.

I'm not sure how, in almost eight years of Mummy-dom, I missed the fact that Billy really struggles with empathy (in the NT sense). He has always reacted really strongly to peers being upset. I took that to mean he was empathising. He always looked so worried, and worked hard (if he was close enough) to calm his friends down.

This week, I realised those reactions were driven by self preservation, first and foremost.

The longer we live in autism world, the more profound the effect of the hyperacusis on Billy's being. When his friends cried, he was trying to make them stop, to make the sound stop. Not to make them feel better, but to stop the sound hurting his ears. This week, when I cried, I cried quietly - in Billy's full view, but quietly. Billy knows I will do most things quietly around him, so he does not fear I would wail and send a wave of sound-pain through his body. He has no fear of me, and he has no empathy for me. He did not react at all to the evidence that I was sad.

Maybe he is unfamiliar with my sadness. It's certainly the only time I have let myself cry in front of him. And yes, half of you think, 'hey, kids need to see all kinds of emotions' and half of you think, 'jeez, pull yourself together lady' and to all of you I say, 'Yeah. Whatever. I'm doing my best. Sometimes I make the wrong call.' To be honest, I haven't had much cause to cry in Billy's company (outside of hospital rooms) in his life. The sadness is 'big picture' stuff, best chewed over at 3am when I'm in that optimal mental state for thinking about the future (yeah, right...)

But last week, while I cried, he looked at my face, covered in tears, through his own tear stained eyes and registered a big old nothing.

The reason for all these waterworks? The dog. Noise. And how we handle the former's need to make the latter.

Scruffy is an awesome dog. He has learned not to bark in most circumstances when a dog's natural instinct is to let loose. Not when he sees birds or possums. Not when he sees another dog. Not when he's in the back of the car with the window open and his tongue lolling out. The one and only time he barks is when someone comes to visit. Briefly, but loudly. He is 35kgs of long white hair. Not a small dog. His bark is enough to scare the be jiggers out of a serial killer. Unsurprisingly, it turns Billy into a puddle of goo. And not happy, Hallmark style goo. Screaming, crying, on the edge of self harm kind of goo.

This has got a LOT worse since we started the drug regime for his gut. A lot. I have no idea what that means. The drugs make him vomit cyclicly (is that a word? It looks like a name for an insect) but I have very little hope I can convince the GI doctor that they effect his hearing/mental state as well. This is a man who took my statement 'Billy does not eat dairy' to mean 'Autistic Billy has an autistic behavioural aversion to dairy'. I'm getting the feeling he's not quite on the A Team (if you get my drift).

I would go so far as to say, we could handle this before the gut drug regime. But right now... oh boy. We are not handling it well. Any of us.

All the dog has to do is sigh, and Billy is weeping and reaching for the headphones. If he actually barks, it's a whole other story. A frightening story. Billy goes to a place he has never been before, at least not in my presence (and that's been 95% of his life pretty much). He has started screaming hysterically... horrible high pitched horror movie ingenue style screaming. Often in the foetal position. Always a precursor to tears, and running away. If the door was open, he would be gone. If there was a busy road between his hysterical self and salvation, he would not notice.

Awesome, huh?

So why am I crying? Well, here's where I welcome you into my own world of odd adjustments. I'm crying because my kid is struggling, for sure. It takes its toll, and some days it's just plain hard. But, as I said before, I can usually hold it in until I am (at the very least) out of his eyeline. Driving the car is a favourite time to let it all drip out, slightly dangerous to other drivers, I admit but I'm sure I'm not alone. I also like arguing with phantom people in the car, pretending I'm talking on the bluetooth to someone. It's amazing how many conflicts you can settle when the other party isn't even present.

But, I digress.

I am crying because Scruffy is my second child. My alternate child. And no, I am not someone who treats my dog like a child. He does not own clothes or eat chocolate or have his own room.I am someone who subverts my desire to be nurturing a tribe of children by having another being who needs my care. I enjoy the responsibility, I love the faith he returns in bucket loads (I did say he was clever, but you understand those buckets are metaphoric, right?)

I may be truly lame in admitting this out loud (as it were), but I love to be needed. I like having a purpose beyond my work. I enjoy the emotional learning that comes from love. It's just that some days it rips strips from my heart.

And last week was one of those days. Those weeks. We had one of those days. Whatever (it's sad that my job is writing and I can't get that straight in my head). I need to get me some filters before I am unemployed as well as tribe-of-kids-less.

Last week, I felt angry at autism for the first time in a long time. There are lots of other good reasons why we only had one child, but the guiding one was the effect babies had/have on Billy. It's very much like the way barking effects him now. That's no way for a child, who already has a bunch of challenges, to live in his own house - everyday. Now that we have been told his hearing issues are physiological at their root, I feel quite reconciled in that decision, because, 'No, Virginia, he will not grow out of it/get used to it. Possible surgery, when his ears are fully grown is the only chance he's got.'

We could not risk losing our boy any more than we had already. And so we did not try for baby number two or more.

I give you that one, autism. Because I have to. Because I respect you enough to work around you. What stinks is that you now are threatening to take my slightly hairier son away too. I'm not letting you win this one, because I need the dog. We need the dog. But I need the dog.

This once, I need to put my own needs in the front of the equation. We'll do more training. We'll get a dog walker to further amuse the dog out of barking (OK, it's a long bow but we can only try. Two walks a day can only be fun, right?). I'll try anything.

I cried because I'm sick of giving stuff up. We've bent ourselves like pretzels around this damn disorder, often to the detriment of our adult lives. And I can suck most of that up. I just need to keep my dog. I need the dog love. Never mind all the great things Scruffy has done and continues to do for Billy - the companionship, the language, the chomping of toys (therefore necessitating the purchase of new ones).

As I type, the dog is at my feet, actually lying his head on my feet. Staring up at me. Snuggling in a little closer each time I look at him. Which, given his bulk, is actually a little disabling. But, I'll give up temporary mobility for this. I'll give up a lot for the many, many benefits this dog brings all of us. I just don't want to have to accept that my child's physical and mental health is damaged by his presence.

So, autism, bugger off and let me keep my heart. At least half of it.

I do not want to be forced into being a crazy cat lady. I'm close enough, without the cats.

It's been a while...

2011-08-22T04:57:00.000-07:00

I'm a bit ashamed to have left it s long between blogs. I have no excuse really beyond too much happening. Thankfully, in these busy times the Apple Corp keeps me connected (if not actually responding!)

As I type my first blog entry on my shiny new iPad (birthday present) and deal with the hilarious auto correct mistakes, I really wonder how parents of autistic kids coped without these loel gadgets.

I know times change and needs must and all those sayings I learned from my old aunties, bu really... Seriously... The things that we can achieve because of an iPhone, a lap top and now this iPad, really shock me.

Billy can learn (from spelling games to maths games to electronic books). ?
Billy can play (it's hardly worth going into the things he can play on these gadgets. Billy can cope with overwhelming social situations. Billy can communicate with other kids and his family in was he wouldn't have a hope of attempting in his day to day life. Billy can keep up with his NT peers in a popular culture sense. Bily can expand his skill base in preparation for a future that uses technology we haven't even dreamed of yet.

And then there's me.

I can work. Two years ago, it was a desktop or nothing. Clunky old PCs took a wet week to start up, and periodically ate my work, tempting me to throw them out the window of a moving vehicle. I couldn't drag a desktop into bed with me, I couldn't write while Billy was in therapy, I couldn't sync my appointments with my dreams and try to organize my constant stream of thoughts, ideas and crazy dreams. I couldn't blog easily.

Over the last week, we've been in hospital with Billy, having more tests. We've been working out of home while trying to keep our homeschooler both focussed and calm. We've been celebrating birthdays and friendships and the fact that we are finally living in a place where these things are way more possible. It's been... A little hectic.

But through it all, we've all been leveled out by these pieces of technology that keep us connected and communicating.

I know people will think, 'Hang on, you can't rely on machines to do the communicting for you. Technology isn't human. It drives us apart.'

And to those people I would say, that may have been the case in the past, and/or it may be the case in your family, but it is not the way for us. When you watch your child struggle to utter words, never mind string them together... When you see your child overwhelmed by normal human experience... When you have to turn your brain insideout to try to help your child understand something that a much younger child picked up without conscious thought... Then you see how the latest wave of technology can help.

I can leave the house now, confident that Billy is less likely to be assaulted by the sound of another child having a perfectly normal reaction to life. Billy can share moments of play and connection that do not require a raft of social scripts and prior knowledge prop them up. Together we can find ways to plug gaps, to answer questions, to plan new experiences with ease.

The one problem I can see... Angry Birds.

It distracts me. It enrages me. It beckons me back all the damn time.

To be honest, despite a heinous result from Billy's endoscopy and waaaaaaybommuch work and an ever growing pile of school work (Billy has discoverednthe self motivated research project, which he now uses to fill every last moment of our homeschooling time... Let's just say we have a LOT of information about moorhens and pademelons to process)... Despite these things, it has not been a busy enough week to stop me from blogging. Those birds and pigs are the real reason.

I curse them, and the slingshot they flew in on. More than that, I curse the game developers who made them, and the ones who are (I am sure) cooking up the next cute, addictive app that will distract me further.

If only I had one of those minds that could invent the next one, I could be distracted AND filthy rich. I need hyper focus, wit, a specific knowledge base, a love of repetition and a mind like a steeltrap. Hang on... I know someone like that.

Is almost eight to young to invent the next app craze? Could we turn it into a homeschool project? Would the rest of the world be interested in a Crazy Gazelle app?

I will post this with apologies for auto correct, because. Cannot work out how to scroll back through what I have written. Perhaps Billy could help me work it out. I will ask him...

Just as soon as I clear 3-24 on Angry Birds.

Up yours, normal thinking...

2011-08-12T04:12:00.001-07:00

This week we got the results of a bunch of testing that we've had done on Billy. The WISC, the ABAS and the WAIT. Or something. Tonight, I am nursing a glass of red wine and combing through the pages and tables of numbers and recommendations, genuinely discombobulated that they are related to my child.

These things are necessary evils of having a child with autism, and form a nice paper lined begging bowl which we use to request support and services for our children. They are about as much fun as adenoid operations.

After the great debacle of 2010, which saw our family leave the safe confines of a small community school when they decided Billy was not in need of services (and some more extra galling statements that we will share once the legal action is over), we buckled down, opened our wallets and set the fan on high - blowing cash and time at a variety of professionals.

We love the clinical psychologist who did Billy's assessments. She is a truly experienced and compassionate person. Which made this week's reports even harder to take.

Billy, the boy who can script, shoot, edit and upload his own movies at not quite eight years old has an IQ of 68. For the new players, that places him in the 1st percentile - Intellectually Impaired. He has a photographic memory. He can absorb information at a rate of knots. He can read, write and add. He is charming and engaged and a joy to behold. And, in the eyes of the 'system' he is bone fide holding a position firmly behind the eight ball.

In cognitive testing, Billy tests at age appropriate level, for the most part. Nothing hints at his brilliance, but nothing says 'this kid is in massive trouble' either. His school report places his academics at a 'sound' achievement. But, if he was to be written up in the paper for some random reason, he'd be simple or handicapped or delayed... or some truly offensive word.

It stinks, plain and simple. But there's good reason behind the lingering stench of poop.

It shows what we were trying to explain to his school, in pure and simple numbers.

A child with a language delay, significant processing deficits and an impaired working memory has as much chance of functioning without support in a mainstream classroom as I have of being a Playboy centrefold. Billy has the above mentioned qualities, along with the genuine ability to achieve just about anything. Put him in a non-visual, language dependent learning environment, with no visuals or aide or task breakdown strategies and he loses the ability to achieve just about anything. At the same time, he magically gains the ability to stare into space, jiggle about until someone punches him and repeat endless excerpts from the Numberjacks.

There are a bunch of ways his learning journey can be made easier. They won't make the impairments disappear, but they can frame the task in an accessible way. Those strategies require people-time, people-thought and people-heart. Unfortunately, those things cost money, Except for the heart. That stuff can't be bought (which is unfortunate, as the education system could be a much nicer place with bit more aorta action).

I know Billy is not the numbers on a page in front of my swimming eyes. I know he is clever. But I also know that the world is not set up for the way he thinks.

I think about the amount of implied information out there - the times we are expected to just know how to respond to a situation. I think about the amount of verbal instruction that exists - when the rules of a game or the response to a crisis is barked to the crowd with no visual supports. I think about the reactions of law enforcement, health professionals and random old folk when Billy has no freaking clue what they are asking or why they are asking it.

He looks like he should understand. He appears as though he is wilfully ignoring you. I do not imagine his cute, indifferent face will go down well with a traffic cop or an emergency doctor trying to extract information or compliance out of him.

It's times like this, I realise the importance of autism awareness. It's not just about getting people to understand what autism is. It's about getting people familiar with what autism does.

For what it's worth, autism does not (generally) include (as a first principle) being a lazy pain in the bum, being consciously insulting or not giving a crap. It just looks like that sometimes. For advanced players, autism is not a deliberate attempt to make people laugh at you (unless you are Dan Ackroyd), not permission to ridicule you, and only very rarely something that requires instructions delivered in the sort of voice you use for your ageing aunt who has English as a second language.

On paper, Billy is a kid who qualifies for 'special school'. In reality, he beats crap out of adult opponents in trivia competitions and knows more about the subjects of Attenborough documentaries than the man himself.

The complexities of his learning style detailed in the reports this week have scared the be-jiggers out of the homeschooling part of me. I have real fears I'm not able to provide the scaffolding he requires. More specifically, I worry I will not understand the subtleties of what he requires. Add those to the health concerns, and the fears that my head might explode from a lack of alone time and professional hairdressing and I am, in all honesty, a little on the shaky side.

I know one to one teaching suits him well. I know he is learning and developing. I know he is genuinely happy and working on the barest minimum stress level. What I do not know is if this is the best thing, for now or for ever.

One foot in front of the other. One Numberjacks dvd in my head at once. One glass of wine at a time.

Time will show what this growing generation of kids on the spectrum can contribute, if they are supported (or not) to do so. How we articulate the need for that support, and secure the means to provide that support is a whole other question.

One for a night without so much wine...

I am at Hopeful Parents...

2011-08-06T04:38:00.000-07:00

Where other people's words provide the care and cups of tea I crave from our hospital system.

Click through (and wear a mask), Billy's sick again.

Memories... repeated over and over again...

2011-08-04T04:08:00.000-07:00

Sung in my best Barbra Streisand voice (which, unsurprisingly sounds nothing like Barbra and everything like Rebecca Black).

We've been going through a bunch of home movies recently. Billy discovered the hard drive on our DVD player, which is where we stored said movies until Apple Corp entered our lives and shut down our ability to choose. If you are a fellow autism parent, you will probably understand how well documented Billy's life is... we've got feeding videos and social experiments and shaving cream and rice play and video modelling experiment after video modelling experiment. Add that the the endless visits to the zoos of Australia, and you have many gigabytes of Billy.

And he LOVES every last frame.

For Billy, they are fodder for scripting, they are proof that his memories are real, they are comfort. For us, they are proof of how far this boy has come.

I wanted to draw a line in our funny looking autistic sandbox with this post. I hope it gives hope to families who are just entering the autism game, or at least calms some frayed fears, or makes someone smile.

I've been watching a lot of two-three year old Billy in the last few days. I've been reminded of how our lives were ruled by his challenges. We were able to manage one trip out of the house every day. Any more than that, and Billy was a sad mess. Some days we didn't make it out at all.

Most of our trips were to zoos, because that was what made Billy happy. Having said that, if the zoo was busy, or had a school group in it, or had construction going on, or (god forbid) had a screaming baby in it... the trip was over and the day was done. We went back into our cave, which mostly involved Billy shut down to sleep and me cuddling him on the couch and cursing at the neighbours when they let their kids scream endlessly in their backyard.

His tiny eyes are often red rimmed in our home videos. They have huge dark circles under them, often. His hands were never far from his ears. His voice is charmingly babyish, the delay in his language just making him look cuter (to us, of course. If you look closely at the background, you can see people looking quizzically at the tall three year old with the one year old's language. He echoes almost everything we say, he falls into repetitive question/answer forms, he struggles to sustain any kind of conversation, his vocal tone is cute as a quince but just slightly off in an unexplainable way. You can hear the strain in our enthusiastic voices as we try to drag him out of his defence position... you can hear the wanting in our voices, the hope that this veil over our treasured boy would just bugger off and leave us to enjoy our lives together.

Those really were the dark days. In memory they seem dark. On video, they seem dark. Hopeful, but dark.

Today, we are in such a different place.

The autism is still there, as there as its ever been. His health is still compromised, and the health threats come in waves. What has changed is our perspective. Both the grown ups and Billy... we've changed as a family.

We are happier, more accepting, more courageous. We have the ability to take on more, to navigate more swiftly, to anticipate, avoid, alleviate a lot. We can take chances and be confident in our ability to get out of whatever happens in one piece.

I've been trying to work out why we've changed (or what changed within us). To be honest, I am not sure, but I suspect it's just time, experience and being hit repeatedly over the head with the wet fish of autism.

Along with a lot of positive experiences, we've come across way too much ignorance, intolerance and insensitivity. In big ways and in little ways. In schools and hospitals and shops and at family dinners. We've been insulted, ignored, abused and maligned. We've gone from thinking the problem is autism to realising the problem exists well outside of Billy and any condition he might have.

Even in situations that have been welcoming, there have been compromises. Even in places where he is comfortable, there are qualifications. The world is not set up for difference, and somehow people have got the idea that it's OK to denigrate someone (or their family) because they are different.

In the beginning, we were trying to avoid being the different ones. Now, we accept who we are. Different has become kind of normal.

Today, Billy saw a new doctor - a cardiologist. He had a cardiac ultrasound, and he did it with no preparation. Then we went to the vet (full of barky dog potential). Then we went to a photo shop and had passport photos taken. Then we had cake, and Billy got to have a surprise visit to Daddy at work while I went to a meeting. Then we went home, picked up the dog and went to the local dog park.

Billy did it all, in his own way, in his own style, with a lot of arm flapping, skipping and grimacing and a few ear covering tears. He said please and thank you when it was appropriate, he ate, he used unfamiliar toilets (a feat in itself in these days of explosive poo... a whole other story), he was awesome. He's come a long, long way.

We've come a long way. They're not dark days anymore. They're just days.

At the end of his appointment today, the doctor said 'You were really well behaved, Billy.Thanks' And Billy replied, 'Yes, I was.You're welcome. ' The doctor looked at me and said, 'We should all take our accolades like that.'

He's right. Yet again, Billy shows us a better way of being.

And if you will excuse me, I'm off to make some more videos. Billy's going to need something to watch in four years or so.

The power of one...

2011-08-01T04:33:00.000-07:00

And no, I am not suggesting you read Bryce Courtenay (unless you really want to, and if you do, read the book about his son, Damon - April Fool's Day, because it's astonishing, in my opinion). But, already, I digress.

This post is about one to one teaching, and the power of it in the life of my son.

We have just begun Term 3 of our Distance Education (homeschool) adventure. Distance Ed is schooling at home, that is fully supervised by the education department. We have developmentally appropriate units of work sent to us, and we complete them and send them back to a supervising teacher.

It's (sadly) temporary until we get a handle on Billy's health issues (fodder for another post). It is a great way for us to get our heads around where Billy's same age peers are at, learning wise. It's a great way of exploring learning in a manner that accommodates both the expected (NT) and the possible (ASD) in our lives.

Some days I want to throw up, because I cannot work out how to explain (mould, re-constitute, re-iterate, represent) some concept that Billy needs to learn. We've struggled with money (who knew that 7 year olds should be able to make change for $20?), we've spent more time on the intricacies of handwriting than I ever thought was possible (until an old episode of Elmo's World covered all the necessary basics in a 7 minute segment and I almost cried with relief) and we've listened to recordings of a lot of kids talking about their lives (something Billy finds as interesting as the rise and fall of stock markets of Eastern European nations).

Other days, I want to cry with relief. The days when things fall into place, when his little eyes light up, when he furrows his brow and works and works and works at something until he's got it.

To be honest, most days have a fair mix of both in them.

Billy likes to achieve. He is one of those kids. He looks for the light in your eyes when he's on the right track. He loves to share facts. He's very big on the 'I didn't know that!' or the 'Isn't that amazing?' in response to something new.

He is not a perfectionist, by any stretch. His favourite homeschooling phrase is, 'But that's OK' in response to my endless stream of corrections. I have all sorts of sneaky methods to ensure there is some (slow, incremental) change in his practice, because he would be one finger typing and never handwriting (never mind handwriting in Upper and Lower case) if he had his way.

He is not a dogged 'have a go' kid either. He's more likely to guess at something he's struggling with, than to apply any kind of strategic thought. He will not be the kid who hacks into the FBI, through sheer methodical determination. He may, however, luck into their database, and have a good look around (probably for their files about animals or trains.)

This is because Billy is the king of the break.

He is the kid who ends a term completely unable to do something, who has a couple of weeks off, and who can magically do that thing (that has been causing his mother to weep into her cornflakes) at the beginning of the next term. It's like his brain needs the rest. It's like his brain has tiny teeth chomping away at the concept, taking bits off the edges, remoulding them with a bit of brain-spit and sticking them back on again. And now that I am thoroughly revolted by that image, I'll let it alone.

We struggle for time doing homeschool. There are many things that make it hard for Billy to sustain attention. His inner ASD-ian/ADHD-ian fights with dog woofs, construction noise from next door, tantrumming toddlers over the back fence... we can be deep in some exhilarating spelling worksheet, and whammo... the doorbell rings, the dog barks, and we have tears and a resolution that he 'cannot possibly try again because everything is terrible and impossible and awful...' And then, we find a book about flamingoes or a crazy pencil (more about that later) and we're off on a learning journey again.

We struggle conceptually sometimes too. Billy's report (a very interesting document in itself) noted his challenges grappling with things like history (it's not here in front of me and there are no photos of it, ergo it doesn't exist - it's the scandal ridden politician's view of history). But there are ways around that (as politicians find all the time). We recently found a brilliant app called Strip Design. It's a way to 'have fun with your photos', if you are anyone but us. For us, it's a way to learn, a way to prepare, a way to ease into just about anything. We've made social stories with it, we've explored history with it, we've annotated Billy's (very fine motor-ly challenged) drawings with it. It's freaking genius.

Concept by concept, story by story, experience by experience, word by word... this homeschooling adventure is really starting to stick. Things are sinking in. There is more laughter. There is increasing serenity. There is a massive amount of flexibility. None of these things have a nasty undercurrent, to me. They all seem positive, productive, possible.

All in all, I dread the day (should it come) when we send Billy back in to a big class full of kids and bossy (not-Mummy) adults. I see how other kids thrive at school. I wish (for the sake of my sanity and hairstyle) that it was a place where Billy would thrive. But right now, it does not seem like the right place for him. Not in the form it exists in now (heavily populated, noisy, fast, lengthy in hour and plentiful in germ-age).

It sucks some days to have to accept that you only get one go at life, at least in this conscious life we live now, because sometimes it would be handy to be able to compare. For now, though, it is what it is.

Homeschool is what we do, and it is working well on all sorts of levels that non-homeschooling did not.

One to one learning means Billy learns. One to anywhere between 18 and 39 learning meant he did not.

One to one learning means Billy is in control of his learning environment. Higher ratios mean he is not.

One to one learning means we try and try and try (and rest and cry and get distracted and have a break) and try and try until we get it. That could not and did not happen at school.

One to one learning means we can use a crazy pencil (seriously, instead of his name it has the word 'crazy' etched into the end of it, and it jumps around a lot, magically finding itself in the right position in his hand) to encourage the correct pencil grip, a set of tiny animal toys to encourage the appropriate behaviour and a series of un-smily faces and drawings of bottoms to endorse the 'wrong' way to do things.

Neurologically, Billy comes with an individualism that requires unique attention. We live in a society that cannot afford to respect the need for that attention, and instead chooses to see his difference as something to be moulded into something more recognisable. For now, I reject that reality, and choose to celebrate the difference. Even if it means I have a shocking home made haircut and tear soaked breakfast cereal.

For what it's worth, Billy's Distance Education report said he had a 'sound' grasp of the Key Learning Areas for 2nd Grade. For any parent with a child on the potentially mainstream-able end of the ASD spectrum, you will understand this is a double edged sword.

On one level, we know he is deeply clever and has waaaaay more than a sound understanding of many, many things. On the other, we realise that an intricate knowledge of the populations of at least 100 zoos worldwide is not exactly what the Year Two curriculum is calling for. On the most important level of all, we see that making your way through school at an expected age level, with solid mental health and a general lack of physical and emotional bruising... that's a win.

My hair... not so much. But I'm convinced if I keep snipping, something nice will emerge.

A little back story...

2011-07-28T04:22:00.000-07:00

Now that Glee is big and all that, I have a little confession to make.

When I was at high school, I was a theatre nerd. And I loved every second of it.

I have always loved words. Since I was a tiny kid. I loved to read, more than write.

I went to a production of The Wizard of Oz, in Ireland (where I was born) when I was 5 or 6. I sat in the squishy seats, in the dark, watching the people on stage, and I knew I was home. Never knew anything more clearly.

As I moved from kid through tween to very, very awkward teen (and across continents), I found writing. At school, at home, anywhere... I liked that I knew I could string words together. I liked that people saw I could string words together. I liked stringing them together as I watched the cool kids doing their cool stuff, suspecting that my ability potentially had a longer life than their coolness.

At a point in high school when the arse threatened to fall out of my world, I found youth theatre. Amazingly, it was full of nerds like me, who were inspired by the same stuff I was. They were like family. Thirty years on, I am really happy to say, they are still family.

As I ventured off on my own, after Drama School and a life in the theatre, I found other ways to write. I found press releases, and articles, and magazine editorial and (eventually), television, book writing and blogging. Writing is one of those lovely things that pays off in so many ways. Nerdy ways, for sure, but many ways, nonetheless. It makes you the go-to person on birthdays (heavy pressure over the need for a witty statement on someone's birthday card), and the rational editorial head at funerals and company retirements.

Still, deep down, I am a theatre nerd. I hate wasting my money on crap, but I love the moment when you realise you are about to be transformed. I love the commitment, the belief, the transcendence of real committed truthful artistic expression.

So, as I grew older, I was excited about the possibility of taking my future children to the theatre. I spent a solid ten years working in the hey day of theatre-for-young-people in Australia, thinking it would be cool when I could walk into a theatre with my own child. I hoped that we could share that moment of awareness, the time when you left the real world at the door, and milled about (carefully) engaging with people's dreams.

And then autism came knocking.

Not just traditional autism, but the sort of autism that makes you terrified of crowds. The sort of autism that puts you on the most volatile edge 24/7 wondering if someone, somewhere is going to make a noise you don't expect.

Definitely, not the sort of autism that feels comfortable in a dark room, full of hidden musical instruments and folk given to hoicking out juggling balls and screaming at each other.

I grieved with my inner theatre nerd, in the same way my rugby loving partner commiserated with his inner Wallaby fan. It sucked, in my head, that the one (legal) thing that lifted me out of the everyday and lit up my mind, was out of my son's reach.

But I sucked it up. After all, Billy is awesome. And Billy's brand of autism brought us animals (of all shapes and sizes, and presented in all media). Animals are excellent, and I love them too. Autism also brought us trains. Not so exciting to me, but hey... you win some, you lose some.

Autism also brought us massive amounts of kid's TV, that lifted Billy out of the social pressure eof the everyday and taught him a massive amount. From Hi-5, we got school skills and child-like playful relationships. From Charlie and Lola we got siblings and passionate histrionics. And from Little Einsteins, we got classical music.

Thankfully, Billy's version of autism also brought us passion. Real, driving love for whatever it was he was into at the time. If he heard the word Mozart, he wanted to find out everything he could about Mozart. He embraced that passion as he learned to spell, and he learned to read using Google and YouTube. He drove himself through the skills necessary to uncover whatever he could about what it was he was interested in.

At seven and three quarters, it drove him to the Sydney Symphony Orchestra, and their family concerts. It drove him to the Sydney Opera House, and the chance to sit with a group of other kids and take in the magic of the orchestra. In a theatre.

It drove him to the place I called home.

It's truly pathetic that I feel so happy about heading into the Opera House to see a show with my son. I see that... but I an happy. I love that he loves (for now, at least) something that I don't just love, I connect with... I learn from... I am inspired by.

Because when your child is diagnosed with autism, you are told to rationalise your dreams about who they are and might become. You are told to shorten your horizons and take them for what they are. You are told a lot of stuff.

Little Einsteins brought us the music. Daddy brought us the 'concert' idea. Life strung the rest together into a new experience.

Some days bite. Today didn't.

Next weekend might, when the screams of some random baby drive us out of the Concert Hall at the Sydney Opera House.

But, for now... no biting. Just smiling. And Mozart.

Do you ever get this one...?

2011-07-25T04:58:00.000-07:00

You may have gathered I'm generally not backward in coming forward, most of the time.

In context, where it seems something needs to be said, I am the one who will probably choose to open my mouth and say it. It's not my most socially attractive attribute, but it remains something of which I am relatively proud.

I try to use my power for good, not evil. I am incapable of genuinely following through with a desire (which I often feel) to actually, consciously hurt someone with my words or actions. I still do manage to hurt people, though nowhere near as often as the frenetic voice that surfs the emotional waves in the confines of my skull, goads me to.

Having said all of that, there are times when I an genuinely, absolutely lost for words.

These are the times when people challenge my understandings with bizarre, unfocussed, unhelpful half facts.

It goes something like this.

Me: Billy has shocking bouts of vomiting and we have no idea why.
Someone: That doctor of yours is an idiot.
Me: Wow. Really?
Someone: A good doctor would know why immediately.

I start to launch into the complex, detailed backstory about who we've seen, and what they've said, and who they've referred us to, and what medicine he's on, and what tests are coming next and how much we've read on the matter, and how we plan to build our own enzyme making machine... OK, I lied about the last bit, but you get where I'm coming from.

In some parallel universe, perhaps one broadcast on daytime TV, things are easily explained, understood and solved. Sometimes, I read about such places in books with suspiciously pastel cover art. But I am yet to live in such a place, and I am yet to be provided with a life scenario that is as easily solved as finding a 'good' doctor/teacher/therapist/hairdresser. I would go so far as to say, I dream of such a place.

Over the last year, which has been seriously Dickensian (as in 'the best of times and the worst of times'), life has spun out into something decidedly rich and strange. It feels like, on all levels, the world is a passive-aggressive battle between folk with generally good intentions and ugly closed minded individuals determined to be right.

Moreover, I have been forced to accept that I know nothing. Nada. Zip. I'm out, kind of nothing.

What's caused this empty frame of mind?

Billy's health, and the giant wooly monsters that jump up and bite us.

When he was three, on the urging of happy parents and therapists (professing miraculous changes on their kids and clients) we took Billy to a renowned homeopath. He began a detox program, not long after the meningococcal vaccine. Within a month, he was hospitalised with Transverse Myelitis. He has not fully recovered. Not many do.

This year we finally got some reliable guidance on what makes a child who eats relatively well and drinks litres of water a day constipated to the point of no return. It's a bigger picture disorder that could be nothing, could be nasty. We began a drug regime to get his system cleaned out, and Billy is now felled with waves of bile vomiting. This week, we test to see whether his bowel is twisted, next week we see whether his heart valves are up to the game, the week after it's his sphincter collection we challenge.

He's seven. Not seventy.

We've tried following the advice of the mainstream doctors, we've given the out-there herbally-burballys a go. We've tried the complementary medical people, the hospital residents, the suburban therapists and the child medical research centres. We've talked to a lot of people. And still...

We know nothing.

I have no defence, when the 'your doctor is a dick' people come at me. Maybe he/she is, I don't know.

I watch my kid struggle with everyday life, and while he's not bleeding from an artery, he's not exactly tap-dancing to show tunes either. I sit in doctor's offices and they say things like, 'It's rarely life threatening' and I think, 'For crying out loud, I'm a lapsed Catholic. I'm Irish. We invented catastrophising. Why the hell are you saying this so calmly to me?' I spend a lot of time wondering how other people react to some of the conversations I have been lucky enough to have... because I am seriously at a loss some days.

I know nothing.

Except this.
I know other families deal with terrible things, much worse than the worst case scenarios we are being presented. I take my hat (if I had one) off to those families, because the game of doctor polka is doing my head in. (Have I mentioned I'm not the most coordinated of folk?)

And this.
I also know that my son deserves better health. He deserves better information. He deserves a mother who can rustle up a better response than, 'I know you are, what am I?' when people hit me with their opinions on my life choices.

So, in the spirit of the yoga I have begun to improve Billy's (and my) health...

Please universe, find out more about why some autistic kids are so damn sick. Please find out more about why they can't control their poo. Please find out more about why bananas send them loco and grapes send them up the wall. Please find out who vaccines are safe for, and who vaccines are not safe for. Please test my kid, and give me some guidelines on how I can keep him functioning well. Please let me know how to keep the bile inside his gall bladder and not coming out of his mouth. Please give me evidence I can use, and please could a bunch of you agree before you chuck it out there?

And while you are at it, please stop questioning my credibility and the credibility of other autism parents. Disagree with respect and counterpoint. Ignore us if you are not interested, tune us out if you have no vested interest, listen to us if you do.

If you have the good fortune of having children who have not struggled, or who have been well treated in the system, enjoy that fortune. Use that fortune to shore up your chances of not ending up in the ICU, or the psych ward or worse.

I want to have cogent arguments. I want to have our journey planned out. I want to know where the hell we are headed.

I'm working on it. At the moment, all I've got is 'somewhere else'. Tahiti looks nice.

You know those Mummy instincts...?

2011-07-20T20:24:00.000-07:00

If there's one thing most autism parents share, it's experiencing a gnawing feeling in your gut, telling you that something isn't quite right with your treasured beautiful child. Some of us felt it before birth, some of us felt it once schooling hit, some of us felt it somewhere in between.

For many of us, it was the point where we felt a whole new us growing. The growly warrior lion Mama version of ourselves started to take shape, as we hugged our tiny kids as if we could use their little bodies to squish the gnawing feeling away.

Then, we grabbed their little hands and we started the rounds of doctors and therapists and those odd experiences where you walked into someone's rooms and went, 'Oh man, this place sucks' and spent the whole time trying to plan a graceful exit.

In our family, we could see that the 'outside world', the place where we lived, loved and thrived, was massively stressful to Billy. As a foetus he covered his eyes and ears from the ultrasound. As a baby he cried when anyone raised their voices (no matter what their emotional state). As a pre-schooler he hid in the back of the room. As a primary school kid, he was sick more than not as he struggled to function in a noisy classroom.

No medical professional ever encouraged us to follow our instinct to protect him from the things that stressed him. In fact, they recommended the opposite. Despite their suggestions (which we were forced to try), we have fought, all his life, for the right to respect his need for calm, security and personal safety.

All parents have the lion tendency. I really believe that being a special needs parent, and especially an autism parent, brings out a whole new set of protective (sometimes angry, often innovative ) instincts. And this is why.

If we compared the dynamic body of information we have about expected child development to the actual concrete irrefutable knowledge we have about autism, we'd be comparing the Encyclopaedia Britannica with an Archie comic. By which I mean (should you be confused, as many are by my ravings) we do not know much about autism at all. And much of what we do 'know' is verging on the comical.

If one more person says to me, 'But haven't they proven vaccines and autism are unrelated' (insert any other nugget of autism related information if you wish), I will start random punching. Or I will scare that person by asking questions like, 'Who are they exactly?' and 'What do you mean by proven?' and 'Do you believe everything you read on Facebook, 'cos I'm fairly sure that the Dad who got the shock of his life or the vision of the baby being born that supposedly no-one can watch more than 25 seconds of, is actually 'true'. Then for a final conversational wrap up, I will invite them to prepare a dissertation on their favourite definition of the word 'truth'... while I walk away and make a stiff gin and tonic (I need to research how to stiffen gin, but I'm sure the truth is out there somewhere on the internet).

Every doctor we see has a different, and generally strident opinion on all things autism. It makes it rather fun when you take your child in for a consultation. In the six odd years we've been doing this, it is the exception (as opposed to the rule) that I've walked out of a doctor's office going, 'What an inspiration, that doctor really cares/knows something/changed my mind.' Generally speaking, the first rule of Doctor Club is 'Dismiss what parent is saying.' You don't need to be Brad Pitt to work out the second rule.

I go in with multiple questions, and I watch their eyes glaze over with fear, judgement or anger. I see them looking for my tin foil hat (Doctor says: what do you mean you don't use cleaning chemicals... what's your problem with nitrous oxide... fluoride is great stuff). I hear the tone of their voice shift when I ask that my son's blindingly obvious heath issues could use some sustained, ongoing attention (Doctor says: yeah, kids with autism often vomit for sensory stimulation... don't you know kids with autism get more gastro upsets than other kids cos they're always eating sticks and stuff... oh, yeah, he's withholding poo because he's learned you'll help him anyway). I watch their faces go red as they tell me to calm down, and accept that my hospitalised child is perfectly capable of sleeping alone in a shared ward without a parent there, with the TV turned off and with a pre-prepared hospital 'meal' for nourishment.

Some try, some fight, some use helpful vague phrases like, 'The interaction between the body, the brain and the environment is a complex one.'

And you know what? I'm OK with the vague phrases.

Because the way I see it (and experience it) in the world of autism we are struggling for any kind of absolute. We have some diagnostic criteria, a vast variety of behavioural and health manifestations and a bunch of theories. I reckon we are stretching it to call them theories. Maybe guidelines. Some things that work for some people. Helpful hints, that may be relevant to your child or not.

Big picture, we have splintered studies, funded and supported by niche sectors of health and education backing up the efficacy of one approach or another. We have people in the various camps of the autism community making their claims and slamming the other camps and their views. We have adults living with autism sharing the wisdom and courage of their lived experience, and parent warriors leading the information dissemination charge from their chosen standpoint. All laudable pursuits, and all different in philosophy, approach and recommendation.

We also have an ever growing series of autism industries building up around a variety of premises and promises - cure, recovery, change, social success, mainstreaming, detoxing, neuro-plasticity, focus, compliance etc etc, all of whom are oddly strident in their belief that this is the thing that will help your family. Most interesting, some genuine, all lucrative for someone.

And we have an ever growing generation of kids - people, with autism. All with parents by their sides who want nothing more than 'the best' for their kids. Except there's no consensus on the best. And if you scratch the surface of someone who claims to know the best, their stream of words runs out pretty quick - especially when you try to match what you know of your individual child to their recommendations.

So what do we do...?

We listen to our instincts. Remember those old chestnuts? The things that, way back when, helped us out of that uncomfortable squishy make-it-go away hug and toward the world of diagnosis.

This week, Billy was massively sick again. Vomiting green bile for 36 hours. His GI doctor says it it somehow related to his gut dysfunction and we need to start the process of having a look inside (contrast imaging and scopes - ahoy!) He says these episodes Billy is having (we've just finished the 4th in two months) are likely to be stress related and that we should consider keeping him as de-stressed as possible.

For six odd years (some way odder that others) we have said, 'The intense sensory assault of this world makes our kid sick.' This week, while Billy vomited bile, someone medical finally agreed with us.

It's not the be all and end all, but it might just be a start.

To the therapists who recommended hard core behavioural therapy to 'teach' Billy to be comfortable around other kids - bite me.

To the neurologist who suggested that our major children's hospital was not the Hilton Hotel when I asked for him to be removed from a room shared with babies - bite me.

To the teacher who chose to interpret Billy's absences from school as parental neglect and not a manifestation of stress induced illness - bite me.

And if you won't bite me, bite Dr Poo... hardly a pleasant sounding prospect.

We have a child who can't crap without drugs, who vomits bile after a visit to an indoor play centre, who needs medication to share an aeroplane with a baby... we didn't ask for it, we didn't make it happen and we don't want this to be the way it is forever. No matter what anyone else may choose to think.

We have to follow our instincts because that is all we have. We are not alone in this. Every day, in every way other autism parents are trying to put their kids first as well.

In the face of an education system that will allow an aspiring actress to access supported homeschool services but will not allow a child with autism to negotiate an ongoing flexible schooling arrangement. In the face of a health system that is adamant that their is no such thing as 'autistic pathology'. In the face of a government that deems families no longer need support in caring for their autistic children past seven years of age (and yes, I know we are lucky here in Australia to be able to access such support in the 'early years', it's just slightly inconvenient that autistic kids actually grow up).

Forgive my ranting, I am slightly sleep deprived (and bile stained). Just know that your instincts are likely very, very good and you will need your gin to be very, very stiff.

Whatever that means.

A blog about a blog...

2011-07-14T03:14:00.000-07:00

This week, the Australian Prime Minister released information about a proposed carbon tax. People got all fluffy and red-faced about what it could mean, and there was wall to wall coverage for a couple of days.

What has this got to do with autism you ask? Well...

One of the bits of coverage came from an (almost) astonishingly brilliant blogger called Heathen Scripture. It's a witty, insightful, ruthless piece of writing which I would invite you all to read, but I'm fairly sure than many of you will (as I did) baulk at the first paragraph. It's got a bunch of colourful language in it, in case you are one who is offended by traditional swears and curses. I warned you, OK?

This blogger, a brilliant mind in my opinion, leads me to a question... is it ever OK to make fun of people with disabilities?

And some other questions... like, is 'retard' a nice word or a nasty word? Is it fair to use a distasteful mental image to wittily prove a point, even if that mental image relies on stereotypes of vulnerable folk? Is colloquialism an excuse for offensiveness? Is offensiveness a word...?

It's a bit depressing to read the comments following the carbon tax post. Many of them tried to point out the potential offence (and laziness of using such an ugly image to make a witty point, many of them did not, some of them actually defended the use of the word 'retard' on the basis that it means other things apart from the one we in the world of special needs all hate. Many (probably the majority) chose to use the 'r' word themselves, to illustrate their point.

People I know, and have a lot of respect for, were not affronted in the least. And it really makes me pause and think (and feel a bit sick).

Perhaps I have lost my sense of humour completely. It's possible.There's plenty sucking the giggles out of the everyday around here. We work pretty hard at keeping things light and breezy, but looming court cases and visits to hospital and all that... these are not things that make me crack random smiles.

I just can't work out why it is funny/appropriate/necessary to evoke a distasteful image of people with disabilities to make a pejorative point. It seems like a cheap, nasty shot. I can understand that if your life has not been influenced in some way by disability that you might not care much... and maybe it's that perspective that makes me the saddest.

Today, I thought (and said on FB) 'What if we replaced the word retard with black person or lesbian or Chinese person? Would it be any more palatable to me to laugh at those folk while making a point about politics?'

No, it wouldn't. Not to me at least. Me, who may or may not have lost her ability to 'take a joke'.

It just isn't humorous to me at all to poke fun at vulnerable people, directly or indirectly. Nor is it helpful to associate images of vulnerable people with hopelessness, depravity or stupidity.

I don't think it's about my sense of humour. I think it's about my kid.

Billy is a legend. Don't get me wrong. But there are lots of things about him that can (and do) make people smirk.

Kids, who generally don't know any better, have been known to laugh at him as he chats away to himself, walks funny, struggles with motor tasks that others find dead easy. As his mother, I find it quite easy to initiate a conversation with said children about difference, acceptance, understanding and the fact that I don't have a problem standing on their little toes until their eyes water a bit. I've been known to death stare adults who give Billy pitying glances or those other looks that translate as 'Jeez, I'm glad that's not my kid.'

Because here's the thing.

Billy does not choose to be different to the average seven year old. He just is. He doesn't choose to have no control over his arms and face at inopportune moments. He just doesn't. He isn't trying to sound like Stephen Fry, it's just how he learned to talk.

It's not funny. It just is. He is not a joke. He just is.

I have nowhere near the writing talent of Heathen Scripture. I bow to his ability to both understand and commentate on current events in such a razor sharp and witty way. If I was his Mum, I'd be dead proud. Seriously, I think he's good. So good, that the last thing I would want is for him to be limited in what he can achieve.

I guess I just want the same thing for my child, special needs and all. And I'm guessing if I let people laugh at him because he looks/thinks/is different, I'm eroding his chances of success.

Or maybe I just need to teach him to 'take a joke', even if the joke is on him.

Now I feel really sick.

At Hopeful Parents today

2011-07-07T04:21:00.000-07:00

Doing my head in, waving my arms about...

Just a normal day at the office, really.

Click through if you are keen.

Today, I love scripting...

2011-07-05T18:40:00.000-07:00

Scripting, repeating, echolalia... whatever you want to call it. Today, I am very happy to be hearing it.

Billy is the king of scripters.

He scripts repetitively (the latest grab of children's TV that is stuck on a loop). At the moment it's the Numberjacks. The accents are quaint and English, if slightly shrieky... that Shape Japer wreaks quite a bit of havoc. I'm constantly on edge, thinking all the circle things are turning into squares.

He scripts in play (entire episodes of Thomas the Tank Engine, restaged and relived in the playroom, often videoed so then the video can be scripted, complete with giggles, dog barks and passing car noises).

He scripts events from our lives (this one's relatively new and slightly disconcerting as we have to be on our best behaviour now... the events leading up to Mummy telling the car's seat belt alarm to 'shaaadddduuupp' is the current favourite).

He recreates moments from TV shows and from life in actions (echopraxia), which is hilarious when we are out somewhere and suddenly there's a silent cheetah chase from Big Cat Diary going on. Not so hilarious for the elderly lady wearing her fox fur, mind you, but thankfully many cheetah chases end unsuccessfully.

He has now taken to re-creating movies (echo-speilberg-ia?). He finds clips on the internet similar to the ones he's seen already, assembles them into logical order, records the voice over (with the right accent, of course), adds screen supers and moves on to the next one. The best bit is his approximations of the background music, which are laid in to the voice over. To him, the logic of the aural world is in what is heard, not in the meaning of what is heard. He gets the meaning, but the recreation includes all sound, not just language. Many movies include grabs of conversations, phones ringing, hammering sounds from the construction next door and the odd dog bark. Billy's like a human Lyre Bird.

While he's not an obsessive details man (one of the autism trends he has shunned), he is an eye for detail man. He misses nothing, and works out creative ways to re-present those details in his movies, his language interactions, his cheetah stalkings and his play. Scruffy has been called on, many times, to play the part of 'unfortunate second impala to the left' or 'quarry wall'.

I read a lot about echolalia. I understand the theories. I get the logic. In my internet adventures, I see a lot of parents saying, 'How do I stop it?'

I may be proven wrong, or driven slowly mad by the Number Taker's song, but I would say do not stop it. I would say work with it, use it, enjoy it.

Billy's journey to functional language has been echolalia dependent. He learned to speak by mimicking the language that came to him with the least amount of social and sensory pressure. That language was on the TV. We saw this, and used it to his advantage.

We discovered Mary Beth Palo's Watch Me Learn DVDS - a learning system for autistic kids that maximises language and social skills. These worked like a faith healer on Billy. He saw kids doing things and he memorised everything - the words, the body actions, the facial expressions. He took that data and he moulded it for his own use.

We took our own video camera everywhere we went, and my sing-songy voice noted everything useful (and some non-useful things... he learned a lot about coffee in those years) in simple, declarative language. He learned from that and started commenting on his own world. As his language improved, so did ours on the videos. Bit by bit, the loop closed. Now, he teaches himself, making his own home movies, and reflecting on his own behaviours as he goes.

Sometimes, it's like Billy's rehearsing. He starts and stops, matching the facial expression with the verbal. He tries to get it to match the image he has in his head. Sometimes, it's like he's trying on a new identity for size. Sometimes, it's like pure restorative pleasure. He digs it.

We have a very open dialogue about scripting (now there's an oddly post-modern phrase). We figure deconstruction gives him (and us) tools for conversation, understanding and behaviour management. We talk about where different phrases have come from, we talk about changing up the words and expanding the language interactions, we talk A LOT about limits/appropriate times and places for scripting/who understands and who doesn't understand scripting (this issue of understanding equity comes up a lot around elderly family members who are constantly complimenting Billy's manners without realising that they've come courtesy of Charlie and Lola or Phineas and Ferb).

The NT adults in the house do not always love the scripting, for sure. There are only so many times you can hear 'It's the Problem Blob!' repeated in the key of C in the space of five minutes. On a side note, I try in my professional life as a kid's TV writer to avoid all high pitched utterances, just to reduce the amount of times I have to listen to sounds that could cut glass coming out of my son's mouth.

We do not love it, but we live it. We see its worth, and we value (more than almost anything) its function in Billy's life. It works with his skills and abilities, not against them. It helps him make choices and improve his language and social functioning. It reinforces his knowledge base, and therefore his security in this world. It highlights the astonishing gift that is a photographic memory, and opens doors to future learning strategies.

With maturity, age and our help, I'm confident Billy will learn to manage the social aspects of echolalia. I am assuming that he will not be 35 and repeating news stories to anyone who will listen. He may, however, be repeating them to himself in his own quiet moments. He may also be repeating them because his impeccable speech and gift for consistent vocal delivery has earned him a career as a newsreader or a voice over artist.

Echolalia, to us, is like a symbol of autism. It's one of the things that makes our kid stick out likes dog's balls in NT circles. At the same time, it is something that teaches him, extends him, calms him and gives him great pleasure. The same can be said of most children's educational toys, and I don't see any government warnings to mainstream parents on Fisher Price toys. Except for those odd mistakes with ambitious factory owners and cheap lead paint, but we won't talk about those any more, will we toy companies...

For the last three days, Billy's been in hospital, vomiting, wiped out. He's been on a drip, sad, sorry for himself and... quiet. No volume allowed on the TV. No toys. No scripting.

Today, I love scripting.

Later, when we go out, I'm hoping we don't see that old lady in the fox fur coat. I'm tired after two nights sleeping in a hospital chair and I'm not sure I have the energy to intervene. This could be the day the cheetah chase is successful.

Maybe you should watch the news, just in case.

Accentuate the positive?

2011-06-27T21:03:00.000-07:00

Next week, we get the results of a new set of assessments on Billy.

I hate these things. Hate them. It's nothing to do with Billy, or the professionals doing the assessments. I hate the assessments. I know he's delayed/disordered whatever you want to call it. I know we've got a long road ahead. I have known this for a long time, and I will know it for a long time to come.

Cheers, Universe.

The receipt of pieces of paper, carefully read through and interpreted by compassionate professionals, photocopied in advance for distribution to a selection of other professionals is seriously about as much fun as the flu. Without the resting and watching TV bit.

We're doing these assessments so that, should we make the decision to put Billy back into the mainstream school system, we have an 'accurate' picture of his capabilities.

Can you hear me throwing up in my mouth a little? Seriously... in what strange corner of the universe is standardised, normative testing that accentuates what's not possible, an accurate picture of a child's capabilities?

I see it's necessary. I really do. I get the square peg part. It's important to now 'how' square. What I don't like much is the round hole. I don't like working off a deficit framework from the starting line.

Here's how it seems from where we're standing (or sitting... or bouncing, if you are Billy).

Let's make a list of all the things that a special needs kid cannot do, and focus on how to get them to do those things. Let's use expected milestones as 'normal' (nice, comfortable, expected) and the list as the departure from that nice safe place. We'll drag the special needs kid from the scary deficit place to the expected, normal place. Get it, SN kid? You are not right. We need to fix you. Feel good now? OK, let's get started on your education.

I'm being defensive, for sure. I'm annoyed about being backed into corners as a parent. It just doesn't work for me that I am constantly encouraged to 'fix' my kid. That he's a set of goals and aims and things to change. His life has a sub-text that doesn't feel healthy. And I'm not talking about his health... It's easy to get yourself in a bit of a whiny funk, here in autism world. I don't like to hang around in this place for too long, but while I'm here, I'd like to have a good look around.

Here's a thought.

Instead of giving children with special needs, standardised testing to see where they fit along the spectrum of normal, why not flip the testing on its head? Why not come up with a test that assesses the child's strengths and uses those as guidelines for educators?

Why not say to the system, here's a kid who knows everything about gazelles. He's seven and he knows about 30 species of gazelles... How can we use the skills, processes and abilities that built that list of gazelles and apply it to number facts or literacy? He's also really good at remembering things - spookily good. So how can we use that phenomenal memory to his best advantage? He's also brilliant at spelling. What is it about spelling that comes easily? There must be some way we can unpack that and use it to help him with science, or PE? Let's not try to transfer skills from one topic to another, let's really look at the thinking and learning processes that make this kid succeed cognitively.

While we're at it, let's think about using these processes to get some context on his inability to focus in a busy classroom. There must be a way we can compare hyper-focus and hypo-focus and come up with some tips. And, that whole sound sensitivity thing... that must mean something positive too? Maybe it helps him hear more detail as well.

Why don't we do this?

Is it too hard? Is it too whacky? Do the relatively small (though steadily increasing) numbers of children with learning difficulties make it not worth the research/time investment?

The cynic in me says, we can't do this because no-one knows enough about autism to do it effectively. The dreamer in me says, surely we should give it a go.

Wouldn't it be awesome if your kid could walk into school with a set of positive statements about who they are and what they can do? Wouldn't it be great if autistic kids were considered (and actually treated as) an asset to a mainstream class? Wouldn't it be brilliant if they felt empowered to use their uniqueness, rather than morph it into a version of 'normal' for six hours a day (and then pay the price for the other 18 hours)?

Let's face it. One in fifty-eight boys, one in a hundred kids with autism... lots of classes are going to have lots of ASD kids in them. It would make a lot of sense to see those kids as something other than a drain on resources and a challenge to staff equity.

For every one good story of mainstreaming, there are a hundred horror stories. That (as unreliable a statistic as it is - shoot me, I'm blogging not writing government policy) is an ugly scenario. Go strike up a random conversation about education with any autism parent with a mainstreamed kid. Actually, strike up a conversation about education with any parent. Then find your legal drug of choice and take it. You'll need it.

I know we are lucky to have a kid that has the potential to be mainstreamed. I also know, as we approach a half a school year of homeschooling, that he is a challenge and a half. He is funny and charming and clever, and he needs constant redirection and reinterpretation - even at home. He's not going to magically learn the skills he needs to learn in a classroom setting. He has a neurological disability that makes these skills nigh on impossible. He needs support to learn. he needs learning support. I have very little confidence that the mainstream system can support his learning needs.

The system is not giving me anything resembling confidence by making me stack up my kid's deficits against a list of 'normal' outcomes just so he can be placed in the appropriate box. Or hole, as the case may be.

While we were on holidays, I watched Waiting for Superman, cos that's the kind of education nerd I am. I'm not American, and I don't feel like I should weigh in on how the American education system is or isn't working. What I will say is, that film scared the be-jiggers out of me. It's one thing to contemplate a system that is not addressing the needs of the many, but another entirely to think of how the few are handled. If we base continuous improvement in our education system on scores, on test outcomes, on measurable data, how do we cater for those whose cognition, expression and learning being is not fairly measurable?

For now, I will slather myself in sunscreen and pretend I'm still at the beach (even though it's grey and 10 degrees Celsius outside). I will force my senses into denial, and perhaps my brain will follow. If it works for the systems we are forced to abide by, then perhaps it should work for me.

But before I sink into a place where only chocolate will do, Billy would like to make a(nother) film about gazelles. He has storyboards to create, voiceover to write, sound effects to create, supers to consider. Yes, he's seven... but he's clever like that.

It's all about love...

2011-06-20T04:33:00.000-07:00

We're at the beach this week, enjoying nature's OT clinic and taking on the odd zoo and theme park (as is Billy's wont).

While our holidays are definitely not what we see the 'average' family experiencing, they work for us, and we all love them. We visit the beach a lot, we see animals a lot, we see family as much as possible. We eat a lot of the same foods, we stay in the same hotels, we buy the same toys over and over.

What's interesting, is the effect these holidays have on Billy.

For sure, we are fortunate. Billy is a child who can cope with almost anything if he has his Mum and Dad close. He may not cope with it in the same way other kids do (I don't see many NT kids flapping, dancing, repeating TV shows and retreating into the world of favoured baby toys), but he definitely makes the most of the new.

All through his life, we notice gigantic leaps during and after holidays. Language leaps, cognitive leaps, behavioural leaps... hell, Billy will even eat new foods his grandmother gives him on holidays. In my mind, this alone is enough to call in the Vatican. It's like the relaxation, coupled with the security of Mummy and Daddy 24/7, added to the shock of the new, equals the permission to grow.

As he gets older, we see that growth in a very different way.

At two or three, it was all about the 'normal' moments. We counted the 'normal' approximations as the successes, and celebrated a day that had more normal than 'not'. We saw him take on new skills and abilities and we thought that meant the older, different ones were outmoded.

At four, five and six we saw his courage build, his flexibility improve and his determination settle at his very centre. He found a sense of humour, a set of passions and a love for achievement. We also began to see autism as normal, and the rest of it as a bonus.

Now, at seven, we are revelling in the last moments of childish freedom. We can see the eyes on him, both child eyes and adult eyes. We can see the acknowledgement in those eyes, when they realise there's something 'going on'. We see the divide in the owners of those eyes - some smile in recognition and acceptance, others step backwards lest the disabled boogies journey up their noses.

Billy cannot fully see those eyes yet. He is deep in the moment.

He can see the kids playing nearby, and he wants to play too. He does not notice their confused (or cruel) stares as his arms and face react involuntarily to the movement of other kids' games. He doesn't understand the meaning of the cruel words they mutter, and even if he did, they come too fast and in a soup of atmospheric sound. His processing skills deliver him a small mercy.

He is tall, but still child enough to be overwhelmed by the beauty of the holiday experience. He is bright, but still simple enough to be allowed to put his foot down in childish refusal. He is one step away from being expected to handle more than he can understand.

There have been moments over the last week where Billy has wrestled with the inappropriateness of his feelings, and lost his way trying to understand why things felt too hard. He has stared into the upcoming minutes, and freaked at the fact that he has no idea what's coming next. He has wrestled with the visit of a relative, knowing he wants to see them, but not knowing what their presence will bring (or what presents they will bring).

Twice on this holiday, Billy has burst into tears at the beauty of love. Once was during a viewing of Lion King 2, when two characters showed they loved each other in flashback. The other was when we found a giant love heart drawn on the beach and Billy was moved by the enormity of the sandy gesture.

It was both beautiful and heart-wrenching to watch. We were led to believe that our autistic child might never understand love. The doctors said he is likely to live his own life, without the need for others to buoy him up. We know, for sure, that this is a crock.

Again and again, we see that autism is not framed by the things a person cannot do. It is about the impediments that stop a person doing or expressing things. If we work on the impediments (external and internal), we enhance the possibility of achievement. If we re-evaluate our perception of achievement, we enhance the possibility of happiness. The hard part is understanding what can be worked on and what is immoveable.

Except, as I learned today, where leaping dolphins are involved. Am I the only one who can't hold back tears at the Sea World dolphin show? I'll be buggered if I understand what that's about.

I hope if we keep working on our communication skills (and maybe watch Lion King 2 together), Billy may be able to help me understand.

Back among the gene pool...

2011-06-15T06:15:00.000-07:00

We're back in my home town this week for a short break, and it's lovely.

It's lovely to see that Billy is able to be nice to his Nana. It's lovely to see an 83 year old woman open to understanding autism (when her every instinct is to say, 'why are these kids so rude?') and a 7 year old sound sensitive boy understanding why he has to talk louder sometimes. It's lovely to catch up with old friends, even if I'm carrying around a bunch of guilt for all the old friends I am not finding the time to catch up with...

As always, though, there's an autism theme to the trip.

There's an arm of the autism community, and a headless torso of the wider community that will insist the only reason there are more autistic kids is because there are more autistic kids being diagnosed. That doctors are cleverer (ooooohkay), and teachers are cleverer (yeeeeeaaaah) and that these kids have existed forever, they just flew under the radar.

Yup.

I'm a small sample, I'll admit. Though we are a big Irish Catholic family, so technically, I'm not really as small as all that. I'm not a study, and there's no control and no-one's documenting systematically. I'm not repeatable (thankfully), and I can't even claim reliability since the senior brain kicked in.

But here's what I've learned in my hometown induced analysis of autism statistics.

There are many, many more autistic kids than there were thirty years ago.

There are three in my immediate family. There are a few in my extended family. Of my school friends, there are five with stunningly beautiful fully diagnosed ASD kids. Of my siblings' school-friends, there are four ASD kids. Of the kids I grew up with, there are three offspring with ASD diagnoses.

Back in my hometown, I do not believe there was an environmental insult of grave Chernobyl-type proportions. I do not remember an outbreak of some debilitating disease that could have impacted so heavily on our kids biology, neurology or any other -ology. I do not recall a generation of distant mothering or obsessive kids influencing each other to be odder than normal.

I grew up in a fairly standard city, in a fairly standard state, in a fairly standard country. Whatever that means.

In case I haven't said it clearly before, I believe there is more autism around. Full stop. Period (which really means something else, reproductively, in Australia... maybe everywhere else too). End of story.

There are no autistic people older than me in my family, although there are quite a few geniuses, socially inept folk and vast collections of obscure objects. These things appear in different, discrete individuals. These individuals have definitely bred with slightly quirky individuals, and compressed the quirk, and therein lies part of the genetic ASD quotient, for sure.

However, from zero in one generation to fifteen in the next... that's a hell of a leap.

For the uninitiated, it's worth making something clear about autistic 'traits'.

We are not talking about something that makes you a little odd - not pen clicking or cheek chewing. We are not talking about liking sci-fi or video games to the exclusion of other (more physical) pursuits. We are not talking about being a bit shy, or wary of crowds... though all of these things can, indeed form a part of the picture of an autistic person's life.

We are talking about challenges that frame and often debilitate, how someone sees themselves and how they are capable of interacting with the world. We are talking about skills and abilities that are missing, disordered or un-masterable. We are talking about a totally unique way of operating. Not something you will 'get over', not something you will 'get used to' and be able to change behaviour, not something you are 'making up' for convenience or type A style dominance.

Therapy (in my mind at least) is there to open the paths of self awareness and raising the possibilities of self regulation. It's not about normalising. It's not about changing. It's about managing, understanding, being actively willing and practically able. Not about aiming for same, but working on happy.

I was never a social butterfly. I was prone to a bit of encyclopaedia reading. I was able to recite long volumes of meaningless prose. Am I autistic? No. Am I a part of the make up of my son's autism? Absolutely. Does that deny the validity of his diagnosis or the multitude of diagnoses around him? No way.

It's popular language right now, but for what it's worth I believe my child is one of many canaries in the coalmine-of-now. I do not know what kicked us into this state, but I do believe we are in a 'state' (and I say that with all my emergent old lady passion). As a generation, we are having a 'turn'. We are in trouble.

I love my boy more than anything on this planet, don't get me wrong. He is awesome, and is (thankfully) able in many ways. He is (thankfully) fortunate in many ways. However, if he was pushing me down a hill in my wheelchair in 30 years time, and a baby cried or a dog barked, I would be a goner. It's a sobering thought, really.

If that is the ending to my story, I guess it's an interesting way to go. It's a story Billy can tell his grandchildren. If, indeed he ever reaches the point where he can have children. Or a partner. Or a relationship.

I guess for now, it would be sensible for us to make sure Billy's not in control of Nana's perambulation, no matter how much they understand each other.

Unless I want another interesting story to tell.

An empty vessel...

2011-06-09T05:24:00.000-07:00

When I was a kid (frightened about what this blog post holds?) a teacher said in an attempt to discipline our class, 'Remember, an empty vessel makes the most noise.'

It stuck with me. It seemed then, as now, a powerful metaphor.

If you have no substance, you draw more unnecessary attention to yourself, than you would if you are credible. If you mean nothing, you stand out.

This made a lot of sense today, when I watched my boy behave in a way that parents dream of. Sorry about the preposition at the end of the sentence, but I can't work out the rearrangement...

Today, we had to take Billy to a meeting. It was about him, but it was not ideal that he was there. We had no choice but to bring him, if we both wanted to be present. He had to sit on the 65th floor of a city building, while we hashed out information that required actual focus, and he had to be quiet while we did it.

And he managed it. He managed it with style.

The interesting thing about his behaviour is that it is not what people would necessarily expect of a boy with autism. The generally accepted view is that a 7 year old boy with autism would be unable to focus, remain quiet, understand the need to subject himself to the needs of those around him. Many, many 7 year olds of all kinds could easily find themselves struggling with these things.

But Billy did not. Generally, Billy does not. He is calm and quiet. Unless someone coughs, sneezes, screams or cries. Or barks (generally unlikely to happen on the 65th floor of a city building, thankfully).

His behaviour today made us think about how he is viewed in the world when we are not around. He does not act out. He does not strike out. If anything confronts him, he internalises it. He withdraws, he internalises, he shuts down.

In NT terms, this is ideal. He is not a problematic member of a class. He is a dream. He doesn't make a fuss. He doesn't interrupt. He does not cause trouble. He's easy. In Billy terms, it is not ideal. It takes a toll, physically, mentally and emotionally.

The best metaphor we can find is the fuel tank.

The more Billy encounters in terms of noise, light, movement, sensory input in general. The more noise, light, movement... the fuller the tank gets. At some point, the tank will be full. Then his behaviour changes, drastically. He loses control, he reacts without regard for anyone except himself. This means potential destruction, disruption, devastation.

We have spent his life helping him understand what to do to avoid that change. Through hours and hours (years and years) of therapy, through modelling behaviour, through discussion, through research... we have helped him build the tools to manage his own, disordered fuel tank. It hasn't been easy, because it's not what we experience. It has meant slowing down, observing and re-ordering our own understandings.

To watch him today, rolling with the demands of an entirely new situation (albeit a fairly quiet and controlled situation) was inspiring. To know that so many people read his outward behaviour as a simple expression of his internal life, is depressing.

He does not make noise. He is not empty. He takes hits that most people don't notice. He handles assaults that would make most people recoil. Yet, he is carrying, within him, a fullness and a depth that most of us can only dream of. There's that preposition mistake again.

Today, as most days, I take my hat off to my little boy. He teaches me how to be. He reminds me that the general community have no idea. He teaches me to think before I judge anyone's behaviour. He makes me proud.

And that's more than I every dreamed could be possible.

And more stress over the preposition than I knew I could handle.

I'm at Hopeful Parents again...

2011-06-06T04:25:00.000-07:00

This month, I've used the phrase 'quirky, murky nether regions'.

It may be my favourite set of words ever.

Click through if you've got a spare few minutes.

Stories and journeys and lawyers. Oh My...

2011-05-27T21:50:00.000-07:00

It's been much longer than I would like between posts, as Blogger needed me to clear my cookies. In true passive-aggressive internet style, it didn't actually tell me that. I had to spend the week ineptly googling until I worked it out.

No matter, I am here.

It's been a week of illness. Billy kindly shared his bug with me, and I have to take my hat off to the little man's coping skills because it's a stinker. It's one of those throat bugs that makes moving your head painful, and being the vomiters we are, it's been a little unpleasant. It's all coughs and sneezes now (Billy's coughs and sneezes, as other folk are not able to cough or sneeze around him without him retreating to his inner cave in tears.)

Along with the sickness, it's been a week where we've thought a lot about the parents that we are, and the parents that we want to be. I'm not able to include the back story to this examination, but I'm glad (in a perverse way) that it has happened.

And this is why.

I'm 43 this year. I am (if I'm lucky) somewhere between a half and two-thirds of the way through my life. I feel like, around now, It's timely to look back and make some observations about my 'story'.

Don't get scared, now. I'm not going to take you on a long meandering journey through my life. In summary, here are some of the dot points I carry around with me - migrant kid, Irish in Australia, always wanted to write, outsider in an amenable way, fortunate to have great friends, lucky to have found a really decent partner, ultimately privileged to be a mother.

I have a mind that burns, and a heart in constant conversation with the brain. I churn through emotions, and each one of them leaves a mark. I've made some intensely stupid decisions in my life, but overall, I'm fairly proud of what I've done and what I've become...

Before Billy, my life was focussed on little kids. All the work I have done has been about making the world a better place for little kids - through theatre, through television, through words in general. I'm really, really proud of that, even though it has often meant a lot of intense advocacy and tough discussion. I really don't think we live on a world that has genuine respect for the immediacy of childhood.

When Billy came into our lives, my world came full circle. I loved everything about parenting from the start. Not that it is all easy, but it is definitely meaningful, rewarding, important. It is, without a doubt, the ultimate gig to me.

The only thing that autism has done to my perception of parenting, is intensify everything. Most parents find it hard to watch their child struggle with everyday kid tasks. When your child struggles with 90% of everyday tasks... it's hard more of the time. Most parents are proud of their child's achievements. When the achievements need so much leg work before they come to the fore, you feel you've earned a little extra pride. It's also given me an opportunity to use the skills I had before I entered autism world, in a slightly more obvious way.

So, along with the kids TV, I've always done, I've been able to write the song - Through My Eyes and put together the book - The Autism Experience. And I'm very proud of being able to do something positive and practical towards promoting autism awareness.

Why am I banging on about all of this?

Because it's all about my story. And that makes me think about Billy's story.

In his short life, he has faced more challenges than I have in mine, for sure. Between his medical issues and the individual idiosyncrasies autism brings to him, Billy has a lot going on. You wouldn't know it to talk to him. He has the odd moment of sadness (I have a mental picture of him with his head in his hands this week, crying and saying, 'it sucks more than anything, Mummy!' as evidence), but mostly, he is a really happy kid.

It's a brilliant thing that his story so far, if he were to tell it, would be a happy one filled with love and trains and holidays and animals and wrestling with friends. A lot of that can be attributed to him and him alone - the true beauty of his temperament and depth of his passions. The remaining bits, I think, come from the sheer duck-like leg paddling we do as his parents, to keep his life on an even keel.

Unfortunately, the outside world doesn't always respect the value of this graceful on the surface, comic-ly energetic behind the scenes parental activity (remember, I'm not that coordinated). Like most autism parents, we get our fair share of 'just make him do it' and 'he doesn't need any of that'. When it comes from family or friends, you can handle it with a smile and a hastily assembled voodoo doll or two. When it comes from people in a position of authority - doctors, educators and the like, it's not so easy. In fact, it's downright dangerous.

We, as a family, have entered a new frontier, and it's not full of pretty grasslands and horses. It's full of lawyers and legislation and long, detailed letters. It's where we're learning to be aware of the consequences of every action, every word and every single choice we make. In true Little House on the Prairie fashion, there are a few cowboys, snakes and Nelly Olsen types as well.

Why are we here? I hate snakes.

We are here because of Billy's story.

Billy's story will show that his parents fought for his rights, along with their own. It may show that we won, it may show that we lost. That, we don't know yet. We do know it will show that in Billy's world, fighting for what you believe in, is the right thing to do.

He will be able to say, when he was a kid, his parents thought he was important enough for them to risk weathering a few crappy storms. It will also show that his parents believe that the system should never come before the rights of a vulnerable individual, and that there are laws to back up our feelings - locally, federally and internationally. It will show him that if he chooses to do the same in his life, his parents will be totally behind him.

We may not do this right, but we will do our best. We will do it with honesty, integrity and the odd stiff drink.

It's not about the destination, it's about the journey and the reasons why we take journeys at all.

I would quite like to return to the days when journeys were about hotels and pina coladas. Maybe I should write that into my story...

The shock of the poo...

2011-05-21T05:37:00.001-07:00

This week, we've taken a step backwards in our war with poo. We are officially losing the war with poo. We are being defeated by poo in the war with poo.

I do not like poo. Poo is not my friend. I would not invite poo to my house for a sleep-over. Poo stinks.

Despite this, in the last two weeks, I have seen a lot of poo. On top of this, poo has chosen to invite its friend vomit without my permission (which I would have withheld, by the way). To be fair, this wasn't completely unexpected, but it's definitely an unpleasant turn of events.

Doctor Poo put Billy on a long course of osmotic laxatives to try and regulate the action of his bowel. Laxatives are generally likely to lead to more poo, and these fellas definitely did their job. They didn't deliver pleasant poo, either, if there is such a thing. It was a lot of defiantly unpleasant poo. The drunken footballer of poo.

There was a lot of other improvement associated with the actions of Doctor Poo, so we accepted the unpleasant poo as a consequence of improvement. I was going to say we 'sucked it up', but I decided against it. Not a mental mage I want to take to bed with me tonight. Let's just say, we had an uneasy truce with the poo.

Along with the long, thin, rivers of poo, Billy has been randomly vomiting after taking the laxatives. Five times in two weeks, not long after taking the 'salad water' (Billy hates salad, the laxatives are dissolved in water, therefore the medicine will heretofore be known as 'salad water'), Billy was struck with sudden stomach pain, a wave of fever and then delivered a giant hurl. As soon as the hurl was done, the pain and the fever were gone.

Early this week, Billy had an awesome playdate with some beautiful friends. It went so well, we had another one the next day. Longtime readers will know what's coming next - Billy got sick. For whatever reason (immune dysfunction, bad luck, karma for my teenage annoying-ness), Billy + other kids = illness. So, the second half of this week involved a slow decline into throat infection. Along with the random hurls, we were in quite a state by Friday.

Dr Murphy's Law says, 'on the day you need a doctor that knows your kid, said doctor or doctors will be resolutely unavailable'. And so it was that Friday was the day when we needed to call in the medical cavalry. A replacement GP talked to a replacement GI and x-rays were ordered.

Poor old Billy, surfing waves of pain-nausea-fever, handled an abominal x-ray and ultrasound like a seasoned champion (thanks to the staff at Chatswood Radiology... seriously amazing folk). No obstructions, no odd bowel pathology, no reason for the pain or the vomit. No reason beyond the throat infection he was clearly fighting...

Hmmm... WTF?

Then, on Friday evening someone clever asked whether Billy had a problem with lactose. He, like many autistic kids, does indeed have a problem with dairy products. From around the time when his language stalled, he would randomly hurl after drinking cow's milk. He would also get very constipated if he had a lot of dairy. We haven't done allergy testing, and we should add it to the list of wallet emptiers, but we did make the decision to replace dairy with calcium supplements and a high non-dairy calcium diet. The random hurls stopped, and the constipation lessened slightly. So yeah, we feel like he might have an issue with dairy.

And the laxative he was given by Dr Poo is not intended for the lactose intolerant.

We stopped the laxative, and our relationship with poo deteriorated even further. I'm just going to say, this weekend has been one where we are grateful to not have a massive social life. People might be scared away by the fact that parts of our house smell like the gates of hell. We are very grateful to the inventor of the washing machine.

As with so many things in this autism game, it's like unravelling a ball of spaghetti. What caused what? Which thing came first? What's 'just autism' and what's approaching catastrophe? Is there a difference? Does anyone actually know?

All I know is that we are counting the hours until we can phone Dr Poo and see what he thinks. We will also be buying a bunch of new underpants.

I am thinking of buying camouflage undies (despite my philosophical objections) as a tribute to the poo wars. Or maybe, some flowery ones to give the poo the idea that we, together, are one with the universe. Or maybe just some plain white underpants which I will remove from my son, place on the end of a stick and wave, surrender style, in the wind.

After they've been washed, of course (or we may have even fewer friends).

You know...

2011-05-19T06:06:00.000-07:00

Over the last month or so, I've been annoyingly present in the media in Australia.

It's a price we have to pay to get the book out and about, but in the process I seem to have attracted one lone, angry hater. Because I haven't got enough to handle.

I got hate email, following one radio interview. This blog has been repeatedly defaced. And all because...

Who knows? The only thing that has been communicated to me, by the bravely anonymous emailer is that I say 'you know' too often when being interviewed.

The overwhelming feedback from the book has been amazing. Really positive. And given that it is the collective work of many, many women, I couldn't be prouder. We thought we had something to say, and we said it. We set out to achieve something that hadn't been done before, and we did it. We found incredible support and resource within our number, and wanted to share that with others.

We've heard wonderful stories since it was released. Healing in families, connections made between neighbours, children respected rather than vilified for their difference. The diversity of stories in the book has collected and presented a diverse vision of autism and its impacts. This, in itself has meant we've managed to connect with a wide range of people.

All lovely stuff.

And alongside this loveliness, I'm accepting that if you hang yourself out there, you are going to get whacked.

But really... If people are more worried about my vocal repetitiveness than the fact that increasing numbers of children, every day, around the world, are being diagnosed with a lifelong disability... then I've also got to accept that those same people are well and truly detached from any kind of compassionate, active collective, hope for the future. And that they should, perhaps, get a life.

I hereby apologise for being repetitive. It is something I live with every day, given that my son holds the transcripts from endless Attenborough documentaries and Thomas episodes in the very front of his brain. I am also not a radio presenter. But, whatever, sorry for saying, 'you know', you know?

However, I will never apologise for trying to raise awareness, make change and fight for Billy and those like him.

He didn't ask for this disorder, nor did we. I do not want more families to have to deal with autism, if it's preventable. And I believe it is preventable. At the very least, I think we should find out as much as we possibly can, as reliably and as quickly as we can. I think we should stop passively harming, start actively listening and get on with fixing what's fixable. I think we should live autism awareness through real respect, legislative and societal change.

And if I get abused while pursuing those things... It's nothing compared to the snide comments, pitying looks and ignorant judgement my son faces each and every day. From passers by, from peers, from professional adults who should know better.

Just as I have the privilege of journeying beside some brilliant folk, professionally and personally, so should Billy. If I can do anything to clear the road of unthinking detritus for him, I will.

He is different. He is not less. Having a hand to hold on this journey is not a weakness, it's a gift (for both of us).

This is not about me, and it's not just about Billy. It's about all of us. If you, like the hater emailer/defacer have the 'good' fortune to live in a world untouched by preventable, chronic disease then I would suggest you should be more (not less) inclined to listen to the message rather than take pot shots at the messenger.

Or not. You know...

A late Mother's Day wish...

2011-05-13T18:07:00.000-07:00

After almost eight years of being a mother, I've had lovely breakfasts in bed and chocolates and magazines. This year, I have a couple of other wishes.

There's rarely a chance to express wishes like these, and I know I'm preaching to the choir here, but just in case anyone's got a giant glittery wand, here goes.

Living a life with autism means that other people's behaviour has a huge impact on you. Not just in that, 'wow, what an obnoxious family' kind of way - in an actual, screw your entire day, give up your plans or endure a truly crapola experience kind of way.

So, in the spirit of including people with autism in your behavioural code... here are some suggestions I have for the neurotypical among us. I am going to try to be pleasant about it, but seriously, some days it's like being forced to spend time with the leader of the political party you don't vote for. It saps our faith in the future, and sucks every last moment of fun out of the present.

1. In public, deal with your crying child
If you choose the 'cry it out' method, you are made of stronger stuff than me, that's for sure. Please, though, do it at home. Do not walk away from your crying child at the supermarket, in the park, at a theme park. Why? Because me and my autistic child are somewhere around you, and we have spent two years building to the point where we can be here. It has taken a lot of time/therapy/reparation/courage/learning from us, and one hysterical child is enough to send us backwards. Not only is an uncontrollable crying child going to end our visit today, it's likely to stop us from being able to come back here for a long time.

I get that you need to handle your child's behaviour too. I totally understand that kids are challenging and you are trying to make the right choice to end the unpleasant behaviour. But if you can, put the needs (even the needs you may not anticipate) of those around you ahead of your own frustration. Find a spot away from the crowd to talk to your child, handle it at home, talk to a behaviourist... it sucks, but it will not only help you and your child, it will protect your fellow park goers/shoppers/fun seekers.

2. If you have a dog, train it.
Superman had cryptonite. Many, many autistic people are debilitated by barking dogs. Some with just dogs in general. For us, it's the noise - surprise! Barking dogs annoy most people. Barking dogs turn my child catatonic - frozen to the spot, crying, hands over the ears, likely to run in the opposite direction even if that opposite direction involves four lanes of speeding traffic.

It is not OK to let your dog bark uncontrollably. It is not good for your dog, and it's not good for those with the misfortune to be near your dog. Train your dog, socialise your dog, initiate strategies to keep your dog amused and engaged when you are out, block your fence so they don't bark at every single person who has the audacity to walk past your house. It is possible. There are trainers that can help. It could make the difference between alive and not, for a person on the spectrum.

3. Cough quietly if you can.
Winter is approaching here in Sydney, and with it comes the inevitable coughs and sneezes. It's totally understandable, people need to cough and sneeze when they have a cold. Sometimes, people need to cough and sneeze when they don't have a cold.

Now, we can do something about avoiding the babies and the dogs, to an extent. We have become masters of holding in/masking/re-directing our own respiratory expressions, without blowing out our eardrums. We cannot avoid the sudden cough or sneeze from someone else. If you are someone else, is there any chance you could reduce the volume of your coughing? In the spirit of reducing the spread of germs, if nothing else. Cough into a handkerchief. Sneeze into a tissue. Use your sleeve. Use your breath control... keep it to yourself. It's a natural biological reaction, I get it. But it doesn't need to break the sound barrier.

As I write this, I know it sounds whiny. It is whiny. But it's our life. It's the one thing that's hard.

Billy's repeating is handleable. His need to charge about and crash into things for some part of the day is fine. The flapping and the occasional toe walking, no problem. We are developing some great strategies to help him learn easily, we're working on the gut issues with some heartening early success, we're building a bank of great friends and social strategies.

As a parent, though, it is not even remotely pleasant seeing your child shocked into tears multiple times a day by stuff he can't either control or anticipate. It makes it even harder when you realise that those things can be controlled, to a degree, at the source.

Now that Billy's able to reflect and talk about his interactions, it's hard to not speak out with him. He says hearing a dog bark is like being hit in the side of the head. He says the worst part about kids crying is that they might never stop. He says coughing hurts his ears like when you fall over and cut your knee.

I'm thinking, it wouldn't be OK to deliberately hit him in the head or push him over, so it shouldn't be too hard to try and control the volume of the sounds he hears.

I understand this because I am his mother, and I know I can't expect the whole world to 'get it'.

And even if you don't get it, feel free to give me the chocolates anyway. I'll share them, I promise.

Poo, my old friend...

2011-05-10T04:34:00.000-07:00

I'm going to ramble a bit (really? me?) but I want to start by saying this post should provide some hope for the parents of picky eating ASD kids... maybe picky eating any-type-of-kids.

A week ago, we went to see a paediatric gastroenterologist.

For those of you who have, until now, avoided my wailings about Billy's bowels, here's a brief recap.

Billy was born with no sucking reflex at all. He was fed using a supply line for the first few days of his life, and by the time we left hospital, he had a rudimentary suck. He was never hungry in the morning, but was ravenous when night fell. He made an odd noise occasionally, when you held him, as a baby. It was like a popping sound coming from the space between his lungs and his stomach.

Since he was 12 months or so, Billy has had all kinds of bowel trouble. The Poo Doctor has taught me not to use the word 'constipation' (wise move, it's a yucky word anyway). Suffice to say, Billy has often cried, often gone many days between poos, often done poos that would make a sailor blush.

His diet was limited to a few items (chicken nuggets, diced carrots, rockmelon, croissants, bacon, bananas, fries/chips). He drank a minimum of two litres of water every day, often double that amount. We had supplemented his diet with vitamins, bowel health formulas, probitics, fish oil, calcium, magnesium and zinc.

He has never had diarrhoea. He didn't vomit as a baby - ever. He would spontaneously vomit (always after drinking milk) from about 18 months. These events were very hard to anticipate, and were never related to an ongoing illness. He also had three different breaths - poo breath, fermented breath and an inoffensive 'normal' breath (very occasionally).

Amazingly, with all this going on... he was a genial, generally calm, sweet natured fella.

It took his first trip to the dentist earlier this year (yeah, yeah... he should have gone before... autism, blah, blah... you know the song I'm singing) to realise he had reflux. She saw acid wear on his teeth, and so, we could convince the paed to refer us to the Poo Doctor.

I did say this would be a short re-cap. I apologise for the essay. My previous post (the Hopeful Parents one) will fill in the details of the appointment with Dr Poo. He has a name, and he deserves promotion, but it takes almost a year to get an appointment and he's in Sydney (and I realise that many of you aren't) so I like to call him Dr Poo. Because I can.

So, fast forward to a week after the appointment, and a week after the drugs started and here's the interesting thing.

Billy is eating many, many new foods.

Why? Buggered if I know.

Maybe his gut is healing. Maybe he's not so uncomfortable. Maybe tiny pixies have invaded his brain and made vegetables look like chocolates.

I will say this. Dr Poo is one of those doctors who speaks to kids, not at them, and not just to their parents. After a lot of talking to me and observing Billy playing (yep, doing what kids do), there was a respectfully poky examination and then a long serious chat with Billy. He told him (with pictures) how he needed to eat more fruit and vegetables, how he needed to change his toilet habits (very specific changes - sitting down to wee and poo, heels flat on a step or the floor, going at predetermined times no matter what the result) and how for a while he needed to take some medicine.

Billy took it all very seriously, and he's not a boy with a strong grasp on focus, unless it's on YouTube.

He is doing all the things the doctor told him to, and that includes adding insane amounts of new foods to his diet. In a week, we've added raw carrots, raw snow peas, raw beans, broccoli, radishes, cooked corn, cooked green beans, cooked peas, pears/apples/strawberries (chopped or pureed), nuts, mandarins, oranges and kiwi. He's also swallowing medicine with no protest. OK, little protest.

I'll take it. It's expensive, but I'll take it.

We're deeper in poo hell than ever before, thanks to the drugs. But we're hopeful we're on our way to poo purgatory. We've got six weeks to watch and work for change. Six weeks of watching very carefully, because Billy's on some serious laxatives...

We're dreaming of getting close to the poo version of bright lights and singing ladies... but for now, we're potentially surrounded by pixies who can make vegies into chocolates, so we can't complain.

Over at Hopeful Parents...

2011-05-06T02:46:00.000-07:00

There are lots of amazing people, lots of amazing stories and...

This week's musings about poo and doctors.

Click here to join the dots.

We're baaaaaaaack....

2011-05-04T04:57:00.000-07:00

After a couple of cocky years of avoiding too much therapy and big title doctors appointments, I'm baaaaack. I'm sitting in the waiting rooms, making polite conversation with receptionists and nursing that omnipresent gnawing doubt that I'm missing something vital.

Again.

On the Autism World rollercoaster, I'm back strapped into my seat wondering when something's going to hit me from left field and suck my breath away. Hoping that it'll be something super cool, thinking it's likely to be poo.

It's slightly different these days, though, because Billy's tough enough to be in the appointments by himself (a situation I am not completely reconciled with). He's in with his diagnosing psych today, reacquainting, in preparation for a WISC next week. I can hear him through the walls, hooting and laughing and being more than a little bit charmingly bossy. I'm buoyed by his confidence, and scared by the chance he might poo his pants without realising and prematurely end the session.

It's an odd game, this Mummy of the SN child caper. Sometimes I'm busting with pride, amazed at what we've achieved and sad to leave. Other days, I feel like hiding. I want to take off my 'Yes, my kid is bung' t-shirt and go and get drunk.

Yesterday, it was the Gastroenterologist at the Children's Hospital. I quite like the hospital appointments because I can lurk in the grey area between autism world and medically diverse world. It somehow feels more legit to be queuing for blood tests and ticking boxes on pathology requests. The hidden bonus (booby prize) comes when medically diverse world cuts into my autism reality, and we find ourselves in genetic testing for a range of disorders I didn't even know existed until yesterday. More about that in future posts.

Today, the psych and the GP. Next week, aqua-therapy. After that, Outer Space.

OK, I lie. I haven't booked the aqua-therapy yet.

It's a lesson for the soon-to-be parents, really. Keep in the back of your mind that you may find yourself doing stuff you didn't know existed. You may well do playgroups, and Gymbaroo, and Baby Teddy Decorating Classes. You may even retain your PhD worthy brain while you do those things. On the other hand, you might find yourself sifting through rice to find trains, making visual schedules depicting the steps required to do a poo without unduly distressing the visitors or you may spend time perfecting your death stare for unsuspecting non-autism world residents.

You may also waste time riding high on the cocky assurance that you know best for your child and therefore do not need therapy, therapists or their boxes of rice. You may spend time plotting revenge on the doctors who mention the 'a' word and frantically researching cases that refute their theories (just to reinforce your notion that said doctor is a weird tool who must have found his medical qualifications in a cereal box). You may spend your time identifying obscure medical conditions that on a Friday, in spring, when you lean out of your upstairs window look a bit like what your kid might have.

And you may find yourself staring at your sleeping child wondering what they are dreaming about, and who they might become and whether you'll be around to see it. You might smile at the memory of their laughter, cry when you remember their tears, get to curl up next to them and find your own peace in their sweet smelling sleep.

Some days it feels like Poltergeist, and other days it feels like Mary Poppins. Most days it will, no doubt, be your very own Discovery Channel. And we all love those shows about eating deer poop and counting down to air crashes, right?

You'll be fine.

That feeling in your gut...

2011-04-27T03:35:00.000-07:00

Today, while waiting in the wings of a news studio here in Sydney, about to do an interview to promote the book (that one, over there on the right), I got an SMS asking me to confirm an appointment for Billy with a well recommended paediatric gastroenterologist.

I confirmed the appointment for next week, and stifled a tiny, excited feeling in my own gut that maybe finally we might get some help with Billy's health.

I should contextualise by saying that I am a bit of a catastrophiser. As I type this, I hear the stifled 'You think?' of people who know me in real life. I worry. A lot. I actually plan worrying time. I have worrying management strategies. I spend way too much time worrying whether my worrying is a problem.

The whole deal with worrying, in my mind, is actually some bizarre trade-off with reality. The idea being, if I worry a lot then the chances of the object of my worry becoming a reality are somehow lessened. I have no idea where this dysfunctional thinking has come from, but I cling to it, like a careless recreational fisherman on his upturned boat.

The reality, living with a child like Billy, is so often the complete opposite, that I find myself wanting to stab holes in my upturned boat. I stop myself, purely because I am worried about sharks.

It's not healthy, not productive and generally the sort of thing that cigarettes and beer used to blot out in my youth.

Here is why I have a gnawing feeling in my gut.

When Billy was very young (20 months or so), we were referred to a paediatrician on my insistence. The paediatrician - a woman, told me I should take anti-depressants and send my child to long-day care. I asked for a new referral.

The new paed, on first clapping eyes on Billy, said, 'Oh yes. very autistic. Now, take gluten and dairy out of his diet and spend $1500 on primers, enhancers and supplements.' I asked him whether he should run a diagnostic tool on Billy to actually (perhaps) diagnose autism, and he replied, 'Not necessary. He's clearly on the spectrum.'

This experience turned me so far against any kind of biomedical advice, I shunned everything. Screw him, I thought, I'm making grilled cheese sandwiches for every meal. Fish Oil... bah! Vitamin b12... nonsense. That Children with Starving Brains book... total crap.

Five years on, I'm not proud of my petty protest. I was wrong. My son has a mighty, mighty life altering problem in his gut. He cannot control his bowel well. He has silent reflux. He vomits for no reason, frequently. He has breath that could shock a sailor with its 'colour'. His tongue looks like he's been drinking coffee (he hasn't... he's seven, and already doesn't sleep all that well).

I'm not wanting to imitate Cher on the aircraft carrier (who could look that good in mesh and lycra??), but seriously, if I could turn back time, I would have listened to that stupid doctor. He handled to moment badly, and I handled that moment like a duck trying to play piano... but he was right.

How do I know?

In a fit of pique after a round of random vomits and chronic no-poops, we cut dairy out of Billy's diet, and replaced it with a calcium supplement and an ASD multi-vitamin. The consequence? A drastic reduction in random vomits and a much easier poo experience. It's not gone, but it's a billion times easier.

Fish Oil, makes for improved cognition and much less anxiety. B12 makes for a brighter boy generally, with far less lower gut pain. Motion Potion stimulates and bulks bowel action (minus the gluten and dairy) and makes life slightly more manageable lower gut wise.

As Billy's Mum, I desperately want reliable guidance. I want people who know WTH they are talking about to advise me. I want to feel safe and supervised as we attack what is clearly a medical problem.

I have not found that yet. In fact, I am fumbling about in the dark. I want tests. I want evidence. I want information, and ultimately healing. I'm aware we might be waiting for a long time for these things, but I'll be buggered if I let it be like this forever.

Today, a dear friend shared this article with me. It's about Dr Andrew Wakefield, a man I refuse to condemn. I won't write him off, because I think he asked (and continues to ask) 'why'? Anyone asking 'why' and 'how' and 'where' and 'how often' and 'in what circumstances' and 'in reaction to what'... I support these people. I commit, here and now, to giving these people more time than I gave the creepy doctor who tried to drain my credit card.

I, and so many others, need to know 'why?' Not just for our kids, but for future kids. Though, I'd definitely take some clarity for my own kid right now, if there's any lurking about.

So, I'm hanging on the GI doctor as a starting point. After that, who knows?

This burden is too heavy. Not so much in emotion, but in responsibility. I am not a doctor, I'm a writer, for heaven's sake. I do not feel comfortable making big decisions about my child's medical health without medical supervision. I trust and love my autism buddies, but I am rational enough to understand that their decisions are based on their child. Not mine. I learn from their journey, but I cannot blindly mimic it. It would not be appropriate for my kid to wear some other child's glasses on the basis that they seemed to have a similar kind of short-sightedness.

This autism rollercoaster swings from denial, to cynicism, to fervent belief, to fear, to discovery and back again. Some days, I need to get off. Because I really really hate vomit. Mine, Billy's, anyone's...

I know for sure that a mother's gut instinct is to be trusted. I really hope the gut doctor provides us with more than instinct, and a cookie cutter approach to gut troubles.

Or, I too, may be forced to toss my cookies, in his general direction.

Thanks autism. Really...

2011-04-22T18:03:00.000-07:00

I've been trying to avoid using this blog to flog the book (see right), because it just seems crass.

But this week, I had the privilege of spending time with some of the contributors, who live in the same city as me. We were gathered for an interview with one of Sydney's metro newspapers - The Daily Telegraph. While our kids, again, played together without incident of any kind (there's a whole thesis in why that works so well), we spoke to an extraordinary journalist about our lives, and how they got jammed into the pages of a book.

My point today (if I can come to it quickly) is all about the good stuff that I never, ever anticipated when the 'a' word was first thrown about in my presence.

Here goes.

1. The quality of people on this road.
It's a chicken or egg question, really. Does autism generally hit cool people, or does autism rip your skin off thus making you cool? I seriously have never met such funny, open hearted, focussed, motivated, generous, evolved, flexible, accepting, child centred people in my life. Mothers, fathers, grandparents... almost without exception, people I would quite happily chuck my coat in a muddy puddle for. I feel safe among these people. I feel understood. I feel brave. Most of all, I feel thankful.

2. The joy of the tiny step.
While we all chatted to the extraordinary journalist this week, each one of us had a moment or two where we were lifted by something we saw in our own or each other's children. The spontaneous 'thank you', the constant 'excuse me', the poo in the right place at the right time, the care and compassion of the older kids, the instant companionship the little ones provided for each other... all things that we've hoped for, battled for, wished for - just popping up and being celebrated by all in earshot.

3. The acceptance of quirky.
We've all had those moments where we've thought, 'Ooops, went too far... showed too much of my odd side.' We all have, right? The fun of an autistic gathering is seeing how little anyone cares about revealing your inner quirk. Things that, among NT kids, would elicit giggles (in a nice group) or taunts (in the rest of the world) barely rate a mention. The flapping arms, things spoken in American or English accents (thank you Pokemon and Charlie and Lola), things repeated and repeated and repeated, moments where a child would literally walk away mid-sentence for some processing time... no-one cared, no-one thought it was odd, no-one asked for a reason why, no-one raised a voice or an eyebrow.

4. The power of more than one.
It's no surprise to me I ended up in autism world. I've never been the centre of the social circle. I've always wondered what people who are in that circle know that I don't. This week, and on many other occasions lately, I find myself standing in a much more appealing, oddly shaped circle, listening to people I respect (OK, trying not to talk so much and often failing), feeling proud to be there.

I think the experience of putting this book together has been an extraordinary gift. I don't have all the answers, most of the time I'm struggling to come up with a single cogent one. But... I am immensely heartened by the fact that I am among a population of people who live with, observe, read, manage autism spectrum disorders every day.

We don't have reliable, repeatable data, we have experience. We don't write research papers, we write about our experience. We don't have clinical trials in our houses, we trial experience.

The book brings 60 of those sets of experience together, from across the globe and across socio economics. By standing the stories together, I hope we can see a picture emerging. An anecdotal, and still valid picture of how we came to be here, and how we perceive and handle the journey.

We do not all agree, all the time. We do not have the same story, by any stretch. But we do all share a hope that one day, we will understand much much more about why so many people are in the same position as us.

As much as I love and appreciate the world I am in, and adore my son, and see what incredible skills and perceptions autistic people bring to society at large... I want change. If not for us, then for children to come. If not for us, then for parents of the future. If I can do anything to help that happen, I will move heaven and earth to do it.

Books, songs, blogs... whatever. It's not for everyone, I know, but if I don't use my powers for good, the lapsed catholic in me wonders what evil will emerge.

In the meantime, I'm working on getting poo in the right place at the right time, and for the record, it's not my poo. Yet.

Moving against the tide...

2011-04-17T04:40:00.000-07:00

There was a time in this autism life, where I would read everything I could get my eyes near, trying to see whether I recognised Billy in the words.

I played an odd game of roulette, ruling autism in or out (well, he doesn't line things up... or man, he does do that weird thing with his eyes when he's walking beside a fence...) as I read. I'd sigh with relief when I saw that other families were under more stress than we were, or I'd jealously read stories of kids who flew under the radar and didn't need to disclose anything resembling their diagnosis. My reading habits are, in all honesty, where the rollercoaster metaphor came from. In a flutter of the fingers, I'd go from 'Wheeeee' to 'Whooooaaaaa'.

With the passage of time, and the colourful experiences that it has brought, I've learned that autism isn't an either/or. It's unique. It's not so much unpredictable as a-predictable.

So, I thought it was worth a post about how Billy surprises us with his very unautistic resilience and flexibility.

We've just moved house. Moving house is hateful, confronting, disgusting, exhausting and unpleasant. And that's on the good days. There will, for sure, be some cathartic purposeful re-birth sometime soon. In the meantime, food tastes bad, my clothes either smell or are AWOL, and the dog can get under the fence.

We have opted for location (suburb we like, good schools with track record of ASD-friendliness, close to friends from previous school, awesome dog parks for hairy son who is covered in mud after discovering a feisty rainy day friend). Location also includes walking distance to some of Billy's favourite shops, which has already become a fab motivator (eat this salad and you can get a new gazelle at the toy shop style).

What has amazed us about the change of location is that it clarifies, challenges and isolates the specifics of Billy's style of autism.

The challenges: he takes change like a pro. No problem in the world. As long as Mummy and Daddy are here, all is good. He was a bit worried that his toys had to stay at the old house, but once they came, he was good. He has a playroom/sunroom here, and a big backyard and a secret bathroom in a cupboard (strange, idiosyncratic rental property... more of that later). After all that 2am reading, I am constantly amazed at Billy's ability to weather change. He travels well, he tries new things, he is brave and curious.

The isolation: we are no longer at the top of a cul-de-sac here. I totally get how, in real-estate terms, the top of a cul-de-sac is good. But in autism terms, the cul-de-sac concentrates kid noise, traffic turning noise and an unfortunate unsocialised dog directly opposite who barked consistently when anyone (yes, anyone) came close to his house. Billy's life has been ruled by that dog, and it's only now we understand how. In this new house, Billy is comfortable alone at the other end of the house. In the old house, we used to hear regular calls, 'Where are you, Daddy?' and 'Mummy, I need you!' Billy was, more often than not, in a state of noise-induced panic. Now, he is comfortably engaged with his toys, and we can sit (like grown ups, with a glass of something grown up) in another room and... chat. It's taken a day or so to realise that Billy is relaxing without the constant threat of barking erupting uncontrollably from somewhere in his eyeline.

The clarification related to this move is much more sobering.

Today we met the new neighbours - a beautiful family with a girl slightly older than Billy and twin boys slightly younger than Billy. The boys were very keen, in their enthusiastic little boy way, to meet Billy. We convinced him to say hello. He came outside slowly, stood as far away as he could from the boys, twisted his lovely body into a pretzel shape, said, 'I'm here!' and disappeared inside. The twins, understandably, were a little disconcerted. It reminds us that our little man is an unusual member of the league of children. It's a confronting reminder given that this is the neighbourhood where Billy must make a re-entry into formal schooling. These are his peers. Their questioning stares help us prepare for our re-entry into the 'real world' - the place where, no matter how atypical it is, autism will define Billy.

In this month of autism awareness, I am aware how lucky we are. I see how many gifts our boy has been given. I see how much he trusts and loves us. I see how he is able to articulate his feelings and thoughts. I know he is happy.

As we step from our autism cave (old house), where we found therapy and diet and supplements and visuals, it feels a little like a new day.

The autism didn't go away. He didn't grow out of it. He hasn't been healed or recovered. And it's OK. It's really OK.

We have a charming boy. We have a loving boy. We have a funny boy. We have a deeply intelligent boy. We have a life, together, that's pointed (vaguely) towards the future.

And we have a serious damp problem in our temporary rental home. For a woman with deep control issues, and a learned fear of chemicals of any kind... it's not good.

But for a boy with less stress in his life, everything's gold. Wrapped in cardboard and packing tape until we unpack it again, but gold nonetheless.

Stinking germs...

2011-04-12T04:26:00.000-07:00

All through Billy's life, one thing has been consistent.

If we put him in the middle of a group of kids, he gets sick. Like clockwork.

In the world-meet-autism realm where I live, what the mother thinks is generally somewhere between Lindsay Lohan and a right-wing shock jock on the credibility scale. So my statement about Billy's illness is usually met with a smirk and a raised eyebrow. But trust me, I'm not a doctor, it's true.

One of the great benefits of our Distance Ed adventure is that Billy's contact with kids is sporadic instead of constant. We do parks, and the zoo and the shops. We visit people one on one. He gets social experiences that are manageable, and definitely less confronting than the abyss style immersion social learning that school brought. He loses on the growing relationships, for sure. He misses his friends (I love writing that, not because I like making my son sad, but because he actually has a growing conception of sustaining peer relationships).

Every so often, we go to an indoor play centre, and Billy gets to have a good old fashioned bounce around. It's tough, noise wise, but the sensory benefit of the inflatables somehow allows him to take on the challenge. He LOVES these places now, though he is generally a sweaty shell of a kid when he leaves. I see a lot of sweaty shells of kids pushing their way out the door of the play centre with lollipops hanging out of their mouths in a desperate attempt to replace blood glucose.

Last Friday, we went to a play centre. Billy made a couple of friends, and they all hung out for almost three hours. Occasionally, Billy tried to stalk one of them (at the moment, he is often a predator and his often unsuspecting friends are prey... in the David Attenborough style, as opposed to the Arnold Schwarzenegger ouvre). The kids weren't thrilled with being 'brought down', nor were they keen on being 'throttled', but with a few Mummy interventions (threats of computer-i-cide and You-Tube-ectomy), we got through it.

As I was smugly sipping lattes and chatting to a lovely other mother, I said (out loud, I believe) 'Ten bucks, we'll pay for this in three days time...' No, I wasn't planning on waiting to pay for the coffee... I was thinking Billy would get sick.

Then I put myself through this crazy game. I think, 'No... he won't. It's all in your head. Those people who smirk and give you patronising eyes and tell you this illness issue is all in your head are not smug bastards after all, they are right. Billy will not get sick.'

Then I go through a couple of blissful days where I forget the whole conversation inside my head. Well, in the case of the last few days, not so blissfully, because we are moving house on Friday and the weekend was spent packing boxes full of forgotten crap.

Then, yesterday, Billy becomes the sneezing boy. I think maybe it's a bit pollen-y here in Sydney, until I remember Billy doesn't really have allergies. No, it's not pollen or dust or dog hair, it's boogies. Nasty, stuffy, hot headed boogies. Billy has a cold, on the first day of the school holidays. Nice.

No matter how old, no matter how well fed, no matter how much we work on 'exposure'... this pattern has been consistent right through Billy's life. Him, in a room full of kids for more than twenty minutes or so, equals boogies or chuck or much much worse.

We've had his Ig levels checked, and apart from a slight IgA definiency (more of this in a few weeks when we finally visit the worlds-greatest-GI-doctor, and no, I'm not building him up at all....) On the surface, his immune system is functioning. Despite the fact that he's got a patient summary that looks like one of the Sopranos' charge sheets (one of the less clever ones), we have no answers.

This year, his paediatrician agreed we should investigate properly, as it's impacted severely on his school attendance. So we're finally on the road we would rather have been on four years ago.

It brings me to another consistency in the lives of autistic children, in Australia, at least. Or maybe it's just Billy... you decide. We've had more than our fair share of hospital admissions, many many ER visits, way too many trips to the GP. In Billy's life, we have never once not passed the Medicare Safety Net (a neat little government level that reduces the cost of medical intervention once you've spent a certain amount per year). We go to the doctors a lot.

When we go to the doctors, ER, hospital, they generally do their job well and bring Billy back to health and then send us on our way. They exchange paperwork with each other, but they don't speak to each other. So no-one ever says, 'Hey, this kid is sick a lot, what's going on?'

No-one except us.

Who drives the medical investigation of autism? Who orders the tests? Who drives the exploration? The GP? The Paediatrician? The ER doctors? The specialists? No-one os throwing their hands up in the air. We have a few solid DAN/biomed doctors here, but you need to mortgage your house to maintain the process, and their approach is decidedly cookie cutter.

It doesn't seem right, that I - a mother not trained in medicine, is the one who is supposed to tell the doctors what to do. And, for what it's worth, the doctors aren't thrilled about someone who writes jolly songs for little kids making medical suggestions. So who is stuck in the middle of all of this?

Billy. Sick again, after being in a room with a bunch of kids for too long. Sick again, for no good reason. Sick again, when we are about to move house.

Awesome.

I hope the removalists do not notice the boogies on the boxes.

I'm at Hopeful Parents...

2011-04-06T01:52:00.000-07:00

Click through and have a look, and a read.

If you need a little hope...

Or a little smile.

Can I just say...

2011-04-05T04:57:00.000-07:00

Individual, one on one teaching really works for my little ASDian.

I know it's not rocket science. I'm not going to win any prizes for my insight... but my kid definitely is.

We are about to finish our first term of Distance Education. For four hours every school day, Billy and I take over the kitchen table, coffee (me) and water (him) in hand, and we hit the books. It's old fashioned learning. The units are written by very clever educators for sure, but there's nothing innovative/post-modern/howard gardiner about this stuff. It's old school homeschool.

We do handwriting, and spelling. We do a unit of maths a week, sometimes two. We back that up with Mathletics, which we both truly love. Well, love is strong, but we get a lot out of it, and it opens the pressure valve on the constant handwriting pressure. We do news, and reading aloud. We do all the touchy feely-move about-y stuff too. Bit of PE, bit of the arts, bit of Human Society and the Environment. We've started a science unit, too. Twice a week, we meet with a tutor, and twice a week we go on a kid filled adventure.

It's a LOT of work. A lot. We need more than four hours a day to do it, and often spread things out over the weekend. Any more than four hours in a day and we're both a bit wrung out. Any less and we fall behind really quickly.

It's a LOT of resources. We have a 100 litre box on wheels full of pencils and art supplies and my great loves - the Post it notes. We need a lot of paper clips. We need to munch a lot of staples out of things and re-staple them a different way. There's a lot of photocopying. There's a lot of scheduling and organising (neither are my strong suit). We sharpen pencils a lot (bizarre that in the 30 odd years between my primary school years and Billy's, I don't believe I ever sharpened a pencil.) We use a lot of paper and above all, we use a lot of erasers. It sounds so American to me, to use the word 'eraser', but if I say we use a lot of rubbers, my American friends will report me to the police.

For all the resources and all the work, though, there is a LOT of payoff.

Billy's handwriting, in 10 weeks (actually 6 weeks of actual contact, but that's another story) has gone from completely unintelligible squiggles (think the patterns on a scribbly gum or the way your Mum plays Pictionary) to absolutely understandable. His little hands still shake while he writes, and it stresses the life out of his processing skills, but if he writes it, you can read it. We've even got to the point where his grip is 'three-pointed' enough that he doesn't need the the writing claw every time.

Billy's maths skills have improved out of sight. He still finds the abstract, non-concrete stuff hard to get his head around, but I'm rational enough to see that these are life-long challenges. His mind is moving quicker, his basic number facts are solidifying, his enjoyment levels are rising. Mine, not so much, but I have an awesome poker face and a large coffee mug to hide behind.

My sweet boy has inherited a deep love of language, and for that I thank whoever wishes to line up for my offerings (I often have chocolate in case any random deities are looking for a treat in a wooden bowl). He loves funny spelling, co-incidental rhymings, words that sound like other words (if I say homophones, I'm surely flirting with snickers from the cheap seats). He loves to write the way he thinks (in vaguely linked, very detailed, generally animal related sentences). His understanding of writing forms, and his desire to communicate in a written form have blossomed over this term... he's even voluntarily illustrating his writing, which, if I said was unprecedented, I would not be doing the miraculousness of the event justice.

And I hear you. I know that just about any kid would benefit from a teacher on tap. I get that. I really do.

But when the benefit takes a kid from being ambivalent, absent and incapable, learning wise, to at least able to give it a fair crack...? You've got to call it a win. And you've got to continue for a least a little while more. Right? Well, unfortunately for Billy, it can't go on this way.

Billy is enrolled in Distance Education on medical grounds, and that has nothing to do with the autism diagnosis. It is related to the impact his health has on his ability to attend school. The experts agree there's something, but they have yet to build consensus on what.

It's becoming clearer by the day that our beautiful boy is not going to 'get better' in the he-will-probably-just-seem-quirky autistic kind of way. He has come a huge way, don't get me wrong, and he will continue to grow/develop/thrive for absolutely sure. He has abilities and gifts for which we are endlessly endlessly grateful.

But his version of autism clearly runs deep, and has its claws dug into his body. It has clogged up his digestive system. It has ulcerated his oesophagus. It has worn down his baby teeth. It has cut connections in his nervous system. It interrupts his brain with fear signals and processing breaks that he cannot be distracted from easily. It makes his legs jig, his arms spasm and his hands shake. It makes him roll his head and his eyes repetitively. It makes him repeat the same words and sounds, without conscious control. It stops him from being able to experience the cries of a baby or the barking of his beloved dog without uncontrollable tears. It is not mild. It is not easy. It is not get-over-able. Not simply, and not quickly.

So, while we spend our mornings learning together at home, we spend our afternoons at GI doctors and neurologists and immunologists and psychologists - hopefully learning a bunch of other stuff.

As time passes, we must also find Billy a new school, because as soon as we know what's making him so sick, we must re-enrol him in 'the system' or homeschool without the supervision of the Department of Education. This, in itself, makes the desire to see Billy's learning skills improve just that little bit stronger. Setting him loose in the noisy, germ-filled, bell-filled world of assemblies and desks and uniforms... makes my heart squeeze just a bit harder.

Of course, it could be the coffee doing that.

For now, we're sucking as many miracles as we can out of this experience.

In homeschool, there are no bullies (OK, occasionally I'm a little less tolerant than I could be, but seriously, it's hard to smile through the 10th request to finish the word or type a number). In homeschool, we can control the noise (no bells here, unless you count the oven timer telling us lunch is ready). In homeschool, there's only one person for Billy to have to understand (and though I know I'm a little convoluted some days, I am great at hugs and am often bearing chocolate).

And in homeschool, we have holidays at the end of this week. Can you hear the giant release of breath? Watch out, it smells like coffee.

The thing about April 2...

2011-04-02T16:42:00.000-07:00

I don't know about you, but when I was young, I wasn't thinking I'd be walking around in public weeping because I made eye contact with other people.

On Friday night, here in Sydney, I did just that.

It was a spontaneous leaky eye moment. You know the ones - they happen at weddings, when babies are born (to other people... doing it yourself brings on a whole different kind of tears), in the supermarket when you see a single old man buying frozen apple pies (maybe it's just me... but that makes me sad).

Walking down Circular Quay at sunset, holding hands with my tiny man in blue, my eyes just wouldn't stay dry. Billy was excited about seeing the Opera House, and even more excited by the gigantic flock of bats circling overhead. We were headed to see the Opera House sails being lit up blue for autism awareness, along with other families just like us.

Every time I locked eyes with another mother clasping the hands of her child dressed in blue. Tears. Every time I saw a little one with a skippy irregular walk. Tears. Every time I heard a Pokemon induced American accent coming out of an Aussie kid. Tears.

Now, those of you with one of 'those' brains might just be thinking, hang on... Friday night...? That's not April 2. Friday night was April 1. What's she doing... some kind of autism flavoured April Fool's joke?

To be honest, I ask myself the same question. I too, am wondering why Australia chose to celebrate World Autism Awareness Day a day earlier than the rest of the world. We weren't going to miss the chance to see our awesome Opera House lit up blue, in honour of Billy and so very many people like him. But it definitely felt a bit odd doing it on a different date to our international community.

I think this is really important. And I now I may be a bit odd in this (surprise!), it's just a day, isn't it? But work with me for a second.

I think solidarity is crucial in this autism fight. I think it is a fight, too.

We all have our issues in our own lives (and you kind readers share the load on many of our issues just by listening to my random ravings). We all worry about funding, and services and schooling and intervention and organisational respect and recognition. These are very important things in our day to day lives, as individuals and as organisations defined (touched/ruled) by autism.

But on World Autism Awareness Day, those are not the important issues to me. On World Autism Awareness Day, we stand together, identifying what makes us the same - autism. While we stand together, we show that we are proud, we are concerned, we are determined to fight. We show that we are aware of our rising numbers because we are standing among them. We show that we care about each other. We show we will not apologise for our difference, no matter how socially inconvenient we are - individually or as a group (anyone who knows autism knows we didn't have a chance in hell of covering up the oddness on Friday night).

So, even though I am sure there was some completely credible administrative reason why the Sydney Opera House was lit up blue a day early, I do not like it. I find it disrespectful to our community. Why is it OK to say to autistic people, 'Surely the day before is good enough for your celebration...?'

The UN mandated day to highlight autism awareness is 2 April. It is a brilliant thing, in my mind, that the international autism community has that day. We should use it. Together.

We have World Autism Awareness Month to individualise and institutionalise our awareness raising and celebration. A whole month to make the symbology a more immediate reality. On one day, we stand together as an ever growing world community of people and let the autism be. With timezones, it stretches out to a day and a half of April 2-ness. Or, close to three days, if you add the Australian choice to move to April 1... dilute the message, much?

Having said all of that, the compromise position made me cry.

It was beautiful to meet families like ours, in public and not have to worry about who was doing odd stuff. Billy (being a cheetah) stalked well dressed couples on their way to the theatre (ostriches... nice creative touch, I thought). We also had Sonic the Hedgehog, Pokemon and the odd Harry Potter character jumping around doing their thing. We heard lots of misplaced pronouns, and saw lots of impulsive charging about.

Most of all, we stood in a small sea of blue clothing, bathed in blue light from the sails of the Sydney Opera House and smiled proudly.

It felt good to know we are not alone. There is safety in numbers.

Which is handy, because there were cheetahs about.

What could the future hold...

2011-03-31T00:43:00.000-07:00

It's the question that lurks around in the back of my brain like dog poo in park grass (you know, jumps out and grabs your attention at the most inconvenient moments, and takes a while to get rid of...)

I wonder where adult Billy will find himself? What will he be able to do? What will be out of his reach?

I wonder if he will be able to drive, or go to university, or have a girlfriend/boyfriend. I wonder if he'll be able to have a job. I wonder if he'll be able to go shopping. I wonder if people will mock him when they think he can't see.

I wonder how to prepare him for a future that I can't picture. I don't have the skills or the experience to predict where he'll be. I often say, 'Oh I have no doubt Billy will change the world, we just have to stop the world from changing him first.' But really, I'm just spouting platitudes.

I do know that he has a gigantic pile of ability and enthusiasm and humour and love inside him. I do know he is motivated by nothing but good. I also know that he talks funny and walks funny and thinks funny. Well, it's not technically funny to me, anymore, but it's definitely funny to his peers, to teenagers and to the odd other parent (FWIW, if you are an adult and you choose to look at my child with a gaping mouth and a expression that says, 'Gosh, I'm glad that's not my kid', I will follow you and slap with a maggoty fish. I have some for just this purpose.)

Back to the future (now there's a title for a movie or two...), I think there are some positives for Billy and his ASDian peers.

There are a lot of kids on the spectrum, and many many more with ADHD and other behavioural/learning/developmental disorders. The future will be full of out-there adults. This has gotta count for something beyond uber efficient help desks in technology companies and a roaring market in chicken nuggets.

It will surely mean a lot more thinking outside of the box. Need a creative solution for global warming? Ask an Aspie with sensory issues. The drive to get the sun out of your face is strong in those ones. If anyone can see through the extraneous fluff, and pinpoint the real need, it's someone with autism. Dispense with the fear that someone might not agree with you, and the world's your oyster. The rest of us just need to get much better at listening and understanding what autistic people are trying to tell us.

One of my favourite things about living with an autistic person is the respect he has for 'the moment'. There are times when a moment is so excellent, it is repeated over, and over, and over and over. Makes him quite the cheap date. Alternatively, there are times when a moment is so nasty, that the rest of eternity will be spent avoiding a repetition. We will never waste time on a spinning piece of playground equipment again. Why? Because today, one made Billy hurl. Such equipment is heretofore relegated to the pits of hell. Making trips to the park just that bit less fraught with choice.

I think this will add two wonderful things to our lives in the future - a sense of unadulterated joy de vivre, and an adamant sense of efficiency. What an interesting work flow there might be in 20 or so years...

That is, of course, if the non-autistic folk can accept the autistic folk for who they are. If they can see past the odd speech, the funny walks and the desire to eat the same lunch every single day. If they can accept that someone who communicates with a device, not a voice could be their equal. If they can understand that a bunch of unusual social choices do not dissolve a person's worth.

With that, I descend into shameless self-promotion. Kind of. Through My Eyes, the song, is about to have a whole new incarnation.

The video below features someone I am proud to know. It showcases his talents and it gives him a chance to communicate with people who exist outside his own experience. But that's where the content of the video ends, and the bigger meaning begins.

Scott James has Aspergers. He can sing like very few people in the world can, but his journey with autism has not been a particularly easy one. His adolescence was filled with bullies (peers and adults) and his potential was not recognised by many. He didn't always make choices that made universal sense outside his own mind. Luckily, he lives in an amazing family that couldn't be stronger and in a community that is learning to understand him.

Scott put himself on the line and auditioned for X-Factor UK a couple of years ago. He made it to the end of bootcamp. For those of you that know autism, and watch those shows... just think of the pressure that one of those shows puts on a person. And then think of how your child/sibling/partner would cope with all that pressure - the timetables, the social demands, the lack of reality in a reality show.

Thanh Bui did such an amazing job of the Australian release of Through My Eyes. He gave the song life, he gave the song heart and soul and he supported it as it developed it's own momentum in autism world.

Given the trajectory that Thanh launched, we were really concerned to make a good choice about finding the next artist to record the song. And along came the news that a young man in the UK had done an extraordinary audition for X-Factor. A bit of YouTube/MySpace/Facebook-ing and a flood of tears after watching a beautiful mother/son relationship, and we'd made contact with Scott James.

It's been a long road to get to the release of Scott's version of Through My Eyes, but it's been a road that has taught me more than I ever thought possible.

It's shown me that people should be accepted for who they are, not what they can offer you. It's shown me that a pure heart is worth more than anything and that there's always a logic to someone's actions, even if it's not obvious. It's shown me that the faith that parents have in their children is not misguided, no matter what anyone else thinks.

It's also shown me that Billy's future is in his own hands. He doesn't have to do any of the things I have dreamed for him (Booker Prize, UN posting, atom splitting). He has to do what he wants to do, how he wants to do it, when he wants to do it. And he will probably choose do it with a Thompson's Gazelle involved somehow.

And I will be waiting for anyone who doubts him, with a squirmy wet fish in thwacking position.

In the meantime, have a watch of Scott's video. It will be released on 2 April (World Autism Day) and all proceeds go to an autism charity in Scott's home town, if you want to drop a small amount of money on iTunes.

Two videos in two days... can you tell I just discovered the video linking gizmo...?

Ode to the Post-it Note...

2011-03-30T00:32:00.000-07:00

Alternate title: Further Adventures in Homeschooling...

I have to start by saying I'm generally all for using as little paper as possible. I've got a touch of the hoarder about me, only in the fact that if I am able, I seem to accumulate piles of crap faster than a sewer. So, I try to not acquire it, so I can avoid collecting it.

But it's a little piece of paper that I feel the need to sing about right now. It's the Post-it Note. It's my teeny tiny saviour as I wrestle autism and curriculum and the fact that there are only 24 hours in every day.

You can write on them, you can cover stuff with them, you can cut them up into useful shapes. You can make patterns with them, you can re-use them, you can eat them.

OK... it's probably not a good idea to eat them, but right now I'm using so many, Scruffy's got the idea they are something to be coveted so he's made it his quest to eat a few.

It's tough for Billy (and often me) to isolate the most important information, at any one time, on a page or a screen. It's even tougher for him to NOT be distracted by the least important information. But if you add a Post-it... You can stick one over a computer screen to block the flicking, repeating, animated thing that often attracts the autistic eye. You can summarise information on a Post-it and stick it next to the confusing mess of symbols. You can cut holes in a post it to make a window to look at.

Handily, you can use the multi-coloured ones to make a visual schedule. I can do a bit of creative sticking on a worksheet, and then say, 'Do blue, then pink, then yellow', and somehow that's easier for Billy than saying, 'Do questions 1-3 while I eat my toast.'

It's often said that manipulables like Cuisenaire Rods and Base Ten blocks are the keys to getting tactile, sensory focussed autistic kids to engage with basic number facts. I agree they are a great idea, but find it's hard to link the concrete play back to the worksheet (and therefore generalise the learning). Enter the Post-it, which can easily, quickly and dynamically label collections of blocks. You can write sums using separate Post-its, and assemble the information in a form that mimics a traditional sum (well, depending on how quickly you do it). It builds a little gluey paper bridge between 'fun with blocks' and 'how in hell do I answer 4 +4+4=?

As I re-read what I've written, I'm starting to think... what has my life been reduced to? But I'm bigger than that thought, and more to the point, Billy's learning journey is bigger.

Sometimes, homeschooling is so hard I want to cry.

I've never had even the slightest feeling that I'd like to speak roughly to my son. Until now. Not right now, but when I've come up with 19 ways to ask, 'Which number is the odd one out?' and he's still staring at a butterfly outside the window... in those moments, I think up lots of abusive swears. I think, people, I do not say.

I always thought of myself as a fairly creative thinker, but this homeschooling adventure has brought me back to reality with a thump. I did train as a teacher long ago (and met some of the best and the worst people on the planet in the process, but that's another post) and the lecturers were always going, 'Oh that Valerie, always taking the road most obscure...' I had visions of myself covered in butterfly stickers and home-made wings uncovering the concept of metamorphosis with a pack of enthralled kiddies flitting in my wake...

Let's just say, I may as well be reading Kafka's take on metamorphosis to Billy... it's not his lack of ability to understand that gets in the way. It's autism, that requires short, sharp, repetitive stabs at the same piece of information in the same way using the same language every single time.

I had no idea how verbose I was (I hear people who know me in real life gushing coffee out of their noses as they read this). I had no idea how inconsistent I was (again, a fair few ex-bosses will be wiping tears of mirth from their eyes). I had no idea how easy it is to turn a simple concept into a meaningless babble. Actually, I kind of did know I did that, but there's a lifetime of chatting habit to change there.

Homeschooling Billy has clarified for me that the world we live in is an abyss of meaningless communication, with a few choice boats of wisdom battling the waves on the surface.

And my Post-it friends are the sails on those boats.

I love you Post-its, and all who sail on you.

Now, I believe I said I felt like singing about Post-it Notes and this may be the cutest, most meaningful (and easiest for your ears) way to do it.

Post script (get it?): I am not sponsored by 3M or whoever makes post-its and in fact thought this product was a stupid waste of time and flourescent dye until about a week ago. If the makers of post-its want to get in touch about ASD friendly post-it products, I never said that bit about wasting dye...

Daddy rules the world...

2011-03-26T17:08:00.000-07:00

Part of me thinks I should be offended, and to be honest, part of me is - a little. Really, though, I think something very important is going on.

We've had a lot of change in our lives over the past three months. We've started homeschooling. We've sold the house. Our timetable morphs all the time depending on what we are working on (professionally... TV demands the hours, not the other way around). The change is still going on (did I mention that we are three weeks away from settlement on this house and we... um.. haven't found another one yet... aaah). But one really important thing has grown stronger and clearer and brighter in this time.

Billy and Daddy are a team. Without wanting to give Charlie Sheen any more airtime than he's already got (because clearly my blog sucks in the readers like the big boys), Billy and Daddy are a winning team.

Daddy will fix anything. Daddy has all the answers. We need to call Daddy many times in the day to tell him what happened. Daddy's potential feelings are referenced all day. Daddy knows a lot of stuff I do not know. Daddy will let him do stuff, even if I say no (we're working on this one as a family...)

There are so many good things about this, in my mind. It shows that Billy can and does understand relationship dynamics. It shows that my boys have a great bond. It shows that Billy's Daddy is a really, really wonderful Daddy. In many ways, Billy has the world at his feet because of his Dad.

Here's how.

Billy is seven and a half now. He's a boy. He loves physical activity and video games and computers and animals. He likes to watch things crash and fall, and he thinks it's unbelievably funny. As a girl, who's brothers were older than her, I am in a whole new world of confusion. Violence (even animated violence) just isn't funny to me. But as I type, I'm listening to Billy giggle as he drops a car on Bart's head on the PS3.

Thankfully, Daddy is there. Daddy gets it. Daddy has remarkable patience. Daddy shares his fun. In a responsible way, of course.

It's not just about video games and violence, though. It's about faith.

Daddy isn't ruled by fears. Daddy deals with the 'what ifs' when they happen, not in fifteen ways beforehand. Daddy gives things a go and accepts the outcomes for what they are.

We play good cop-bad cop autism style.

I've got the back story and the google degree and the advocacy fuelling my engines. I've got the educational aims, the therapy goals, the (vaguely) linear path in my head. I'm accountable to the doctors, the teachers, the therapists. I've got the diet and the medicine and the cuddles. This is all delivered to Billy in a gigantic pillow of love, but if I'm honest, there's rarely a moment where I'm not thinking, 'Holy Crap, what's next? What should I be aiming for, investigating, trying to improve??'

Daddy on the other hand, has got life. It's a hell of a weight, really. He drives the family bus, collecting the fares, paying the bills, sorting out the dings and scratches (mostly caused by me). He holds us together and moves us forward and keeps us laughing.

I've never heard him complain about autism. I've never seen him show he's embarrassed by Billy's behaviour. I've only seen him guide and challenge and love.

It's not like we don't have bad days, and it's not like we don't both get it wrong. We cross purposes and paths (and swords) all the time. But the point is this.

It's about some kind of balance.

I think someone has to have the autism in the front of their focus. If we had decided to just love Billy and ignore the therapeutic stuff, he'd still be sifting dirt and running trains in front of his eyes. On the other hand, if we were both autism crazies, we risk missing out on the pure kid fun and all the learning and development that goes along with that.

Somehow, by respecting each other's focus, remembering to communicate and allowing each other to do what we do as parents, Billy comes out the winner.

This journey is definitely not the one we one we thought we were going to take. Autism has changed our lives on every single level - emotionally, financially, logistically. We don't get much of a chance to talk about it, but somehow we keep on going forward - sometimes lurching, sometimes stalling, sometimes flying.

And sometimes falling and crashing into things.

Billy loves those times the best.

Just one day...

2011-03-24T03:35:00.000-07:00

This is more a request on Billy's behalf, than from me, but I will not pretend that this would not make me happy too.

Please, for the love of all that's cute and fluffy and innocent, could we just have one day where some sound doesn't leap out of some corner and whack my kid in the head? Just one. One day. No tears. No sadness. No statements like 'Everything is wrong' out of a sweet, seven year old mouth.

I don't begrudge Billy's statements, and I don't take them for granted. I know how lucky we are to have language at all. But seriously, if there is some benevolent fella in a beard (or a lady in a toga, or an alien or whatever) looking over us, could you cut the kid some slack?

Today, I bought a frock, and being the person I am, I bought it online. There isn't a lot of mystery with me and clothing sizes. Let's just say I am at one end of the 'able-to-buy-clothes-relatively-easily' scale, and samples are not my friends. I have recently fallen in love with the work of an Australian designer called Leona Edmiston. She makes awesome, wearable dresses that make you feel like an actual woman (not a collection of forgotten details and 15 year old t-shirts). Fortunately, she also considers grown ups in her sizing. I am the least girly girl in the world, but these dresses don't scare me. So, I bought one.

It was delivered by courier, which requires (amazingly) a knock on the door. This makes the dog bark (the only time he does). This makes Billy cry. And it's not just the tears, it's the recovery time. It's the jolt out of the school work we are in the middle of, it's the sweating and the fear that it will happen again.

We went to the park. The Council has made a clever decision to schedule mowing and leaf blowing (WHY do leaf blowers exist? They're leaves, people, not chunks of poo...) when the tiny park was full of children. This makes Billy cry. And it's not just the tears, it's the retreat into himself. It's the need to run and jerk and twist his head like Stevie Wonder mid-tune to try and shake the physical feeling of the sound free of his body.

We go to the supermarket. It's early afternoon. Time for babies of a certain age to be winding down for an afternoon sleep. Tired babies cry. This makes Billy cry. And it's not just the tears, it's the desperate need to get out of there ASAP regardless of where our shopping needs are at (too many times this happens before I get a chance to even look at the red wine... OK, so maybe that's a good thing).

We walk the dog. A dog barks. We walk down the street. Someone's doing their edges with a whipper snipper. We go to the pool. Someone blows a whistle again and again and again.

Enough, already. Shush.

I want to put a sign up at the end of my driveway, saying, 'NO DROP-INS OR CANVASSERS (but not for the reasons you think)'. Give us some warning.

The drop-in means the dog barks, means we lose Billy. If I am home with just Billy and someone calls offering me home insulation or a better deal on my freaking energy bills, I have to restrain myself from throwing something at their head.

I want to say to people in parks, 'Can you please tell your kid to stop screaming just for fun?'

I want to grab small white dogs by their sparkly little collars and throttle the yaps out of them.

I know I can't, but I want to.

Instead, I tell my child everything's OK when in his terms it's not. I reassure him that he'll be OK, even when he assures me he won't. I push him into the world every day and count it a success if I don't see the tears.

Today was one day. Today was every day. Today was actually a good day. It doesn't go away. It doesn't really get any easier. We just get better at smiling through it.

Here's hoping we get closer to the red wine tomorrow. Or the chocolate at the very least.

A special kind of parenting...

2011-03-19T22:04:00.000-07:00

As we get closer to the release of The Autism Experience, my mind is full of stories of parents like us - autism parents.

The book is a collection of stories from all over the world. The thing that links us is at least one autistic child in our families. I've spent the best part of two years reading, editing and annotating contributions from around sixty women. I think what we've got is beautiful and valuable and interesting and funny and really, really sobering.

It's a life not many of us anticipated. It's by no means all disastrous, but it comes with some curveballs.

There are times you feel exposed.

Like any child, an autistic child will want things they can't have or have a desire that can't be satisfied. People call the behavioural reactions to these events tantrums in NT kids, and they can be frightening and intense, but generally a child can be brought out of a tantrum with consistency and time. In an autistic child, what looks like a tantrum can often be a meltdown. A meltdown is not rational. A meltdown is not easily manageable. A meltdown needs to end before anything can be 'done' about it. An autistic meltdown can range from tantrum like behaviour to severe anxiety/panic attacks to shut down.

Having a meltdown is not a choice by an autistic person determined to have their own way. It is a reaction to the perceived uncontrollability of circumstances external to them, combined with inner circuitry that makes perspective almost impossible. They may improve with age, or may not.

Parenting your child, of any age, through a meltdown is not easy. To the untrained eye, there's no doubt you don't look like parent of the year.

There are times you feel judged.

Many of us experienced an 'eat your vegetables or you can't leave the table' moment as a child. Most of us felt very confident that we would have children who were going to eat as balanced a diet as we could afford. Autism had other ideas for many of us. Not only do we live in a world of supplements, vitamins, hidden toxins, dietary restrictions, allergies and intolerances... many of us have children who eat a very restricted range of foods.

It might be because of their sensory issues. It might be because of oral motor strength and coordination issues. It might be a medical issue - reflux or other GI conditions. Sometimes we know, sometimes it's too complex to work out.

No matter the cause, serving up the same dinner to your child night after night looks odd. It doesn't feel odd to many of us, who are working day in and out to extend our children's eating skills. But to Grandmothers, and fellow diners at restaurants (for those of us able to take our kids to restaurants)... it's clearly odd.

There are times when you are misunderstood.

When your child is unable to speak in particular circumstances, but can in others, people might think you are not encouraging them to use their voice. When your child is sick repeatedly, exhausted by simple child activities, uninterested in leaving the house, people might think you are impairing their social skills. When your child is unable to keep their hands to themselves or stay out of their peers personal space, people might think you are not teaching them self-discipline.

As autism parents, we know those people are wrong. We know those people are ignorant. We know those people are using their own lives, their own fears and their own deficits and projecting inappropriately onto us.

As autism parents, we devote our lives to our children first, and then to fighting that ignorance.

We might do it through books, or songs or blogs. We might do it through speaking and teaching. We might do it through just living our lives - holding our heads up high, celebrating the wins and not hiding the losses.

We might want to do it through acts of random violence on judgemental, unpleasant folk but generally we restrain ourselves.

So, if you see a parent struggling with their child's behaviour, and your first thought is something along the lines of, 'A good smack would fix that' or 'That child is too big for that nonsense'... please take ten seconds. Take a breath and either offer some help or walk away forcing yourself to think nice thoughts.

If you are a professional and you deal with children and parents every day, please educate yourself before you judge them and their choices.

It might not be autism, but it's something. Something that you do not know everything about.

The world can only be a better place if you can at least try to open your mind.

Given the growing size of the autism army, it's probably a good idea. We've got lawyers among us and we're not afraid to use them.

Breaking the code of learning...

2011-03-16T03:44:00.000-07:00

Week five of the homeschool adventure, and there are some clear patterns emerging. I'm learning about learning while watching Billy learn.

Scruffy, from his position at my feet, is learning that humans spend their time doing some really odd stuff.

Here's a summary of what he may have observed me learning.

1. The more trivial the goal, the easier the learning
If I spend ten minutes saying 'add 2 and 2'. See 1,2 plus 1,2... what does that equal? Two apples, add two apples, how many apples have you got now? Two blocks and another two blocks, how many blocks is that? Billy will slump, yawn, giggle, look around, squirm around on his squishy sitting cushion, stare lovingly at the computer and ask if cheetahs hunt gazelles.

If I set a timer and present Billy with a number sentence 2+2=? He will answer the question correctly in under ten seconds, while staring excitedly at the timer.

Why? If we take the pressure off the cognitive process and place it elsewhere, the cognitive process becomes easy. Or my son is oddly empowered by timers. Could go either way.

2. Turn down the noise
Though our whole lives are lived by this maxim, there's a figurative side to it too. A page full of numbers and letters is just that - a random, meaningless collection of symbols. In his gigglier moments, Billy tells me things move around on the page and, to be honest, I don't want to contemplate what that means. It scares me like the times he tells me he sees 'fireflies' in his field of vision. Any neurologists out there, feel free to weigh in on that one.

I have a plastic folder full of pieces of coloured cardboard and paper. They are cut into various sizes, some with windows, some L shaped and some N shaped and some H shaped. I use them to either block out the information on the page that we are not working on right now, or to focus Billy's attention on the spot he needs to be writing. The added bonus is that I can also make the windows in the shapes smaller and smaller. Did I mention that Billy's natural handwriting is the size of your average elephant footprint? We're working on bringing it down to a koala paw at least.

3. Recording brings out the inner chatterbox
Billy has, in his lifetime, gone entire days without speaking a word to anyone but us. On these days, even we only get a select few pointed communications, usually related to trains and snacks. The combination of his easy going temperament and extreme sensory processing disorder makes for a generally minimal level of verbal communication.

So, when I realised Distance Education required a fair number of recordings be made and sent back to his teacher, I was worried. I'm thinking, he's going to clam up and say nothing when he has to do 'news' and reflections on maths (lord knows, I've got very few positive reflections on maths, even on a talkative day...) Once Billy worked out the technology, and heard the sound of his own voice on the computer a few times, we were in for a surprise.

We can't shut him up. Nor can we pull him away from the front of the camera, or dissuade him from 'performing' whenever he thinks the video camera might be useful to document his learning journey. With an electronic audience, all the communication compromises disappear.

4. 'Writing' is a relative concept
Billy has to complete two journals every fortnight. I asked if one could be typed, because handwriting for Billy may as well be renamed 'marathon running while memorising the encyclopeadia'. This was fine by his teacher.

I'm still not sure what she's thinking about the first four weeks work from Billy on her desk. The handwritten journals consist of two skeletal sentences. Those took maybe thirty minutes each to complete, and bear the stains of sweat, procrastination and chocolate bribery. The typed journals were done and dusted in ten minutes, and are a couple of paragraphs each. They contain descriptions, jokes, information and the odd line of dialogue.

Why is handwriting so hard for so many kids on the spectrum? There must be Phds out there on this stuff.

5. Everything has a smily face
I'm not sure if all school is the same, but the NSW Grade Two curriculum demands an awful lot of pictures. Draw a picture of yourself measuring the mass of two objects. Draw a picture for every letter of the alphabet. Draw yourself drawing a picture. It's like the Old Spice man sketching.

Billy's not a natural with a pencil in his hand at the best of times, but... every single picture he draws has a smily face. Him on a scooter - smiley (him and the scooter). Him measuring the mass of a stapler and a teddy - smiley (him, the teddy and the stapler). Him drawing - smiley (him, the drawing and his pencil).

I have to say, despite all his challenges, and the exhaustion of processing the vast volume of school work (and art work) he has now, the smily faces endure. And they make me smile.

Last but not least...

6. Chocolate is a potent teaching tool.
Think about it. It's bribery. It's reward. It's distraction. It's mental health for me. Only downside? It's poison for the dog. He's not thrilled with the new currency in our house. He'd prefer dried kangaroo.

I've said it before and I'll say it again... teachers are very special people. I am not one of them. I knew once I did the first prac on my teaching degree way back in the 90s and people called me Miss Foley. It made me shudder. Now that I'm homeschooling, I know for sure I am not a natural teacher. It is hard graft, and I only have one student who I know very, very well.

I can only dribble absent-mindedly when I contemplate the job that teachers of children on the spectrum do every day, for minimal pay. It is impossibly, frustratingly difficult. The modern curriculum provides a lot of multi-modal, many-perspective learning. The average autistic child (and my kid is obviously exceptional at being autistic) generally needs just one doorway into understanding. Problem is, it might be the tenth of eleven modes. As his supervisor, I grit my teeth through all the brick walls, hoping against hope that the next one will be the one that morphs into something resembling sense.

It's not about capability. It's not about understanding. It's about conceptual clarity - the prism of autism docking with the portal of information.

And the caffeine of the chocolate releasing the motivation endorphins of the humans (while avoiding the jaws of the dog).

Easy, really. If you are an Enigma codebreaker.

The solution is underpants...

2011-03-12T02:57:00.000-08:00

My little boy is growing up in front of my eyes. Seriously. He's tall.

He's seven and a half, and he's the height of an average 10 year old. He's slender (despite his all abiding love for hot deep fried potato products) and gangly. And as he walks along beside me, almost at shoulder height, bobbing and weaving in his skippy-hoppy walky way, I have to smile.

I smile because he's so himself. So unencumbered by social expectations and kid cool. So at one with the demands of his own being. So buoyed by forces I can only speculate about. I smile because he doesn't miss a trick, in his terms. Every train, every animal, every green car - they all rate a mention. He's giggling about Phineas and Ferb talking about toilets. He's inventing compound words (what's a mixture of yellow and black? Blellow. What's a gazelle crossed with a deer? A gazeer). He's planning the next addition to his toy collections and asking again and again (and again and again) whether we can get them.

I smile because if I didn't, some days I'd cry.

I see what other kids his age are up to. I see the sleepovers and the sporting competitions and the choirs. I see the excitement about growing up. I see the mastery of tasks not related to toys and TV shows. I see the parents sharing a wine as they roll their eyes over emerging crushes. I see the carpooling and the hastily arranged babysitting and the sudden surprise decisions to share a meal while the kids play.

I really love my life. And I really love my family. I love what we have become, and I love the way we handle ourselves - as a unit and as individuals. Most of all, I love what Billy has brought to our lives - beyond the fact that he made us parents. He made us thinkers, and feelers and adapters. He made us appreciate the good moments, and celebrate the small steps right alongside the giant leaps. He made us understand that 'bad' stuff happens all the freaking time, and we can and will endure.

As I watch him skipping along, anticipating the next moment of pure pleasure in his life, I am full of appreciation for the effect he has on us. I am certain he will go on to have a similar effect on many other people in his life. That's if some of those other people can wipe the disdainful judgement and pity off their faces when they meet him.

He can't sit still. Big deal. He walks funny. So? He repeats himself and interrupts. And your point is?

Every moment of Billy's life is lived in the same mode I'm in when I choose my underwear for the day. I'm sure as hell not looking like the chick on the swing tag, but it works for me, and the important people in my life think my choices rock.

Each day, I have to remind myself that looking 'like the other kids' is not success. Being able to be Billy is the goal. Being able to be happy and healthy and some other 'h' word I can't think of right now... that's the aim.

It's so easy to think, 'phew, today was a good day' when it's a day without too much obvious autism in it. But that can't be grounds for celebration. He is who he is. He does what he does. We do what we do. The fact that we all (sometimes) look about as subtle as testicles on a birthday cake shouldn't be a problem. We're not doing it to annoy people. Besides, Chelsea Handler gets away with that crap every day of her life.

Of course, we're all hoping for a day without meltdowns or gigantic allergy shiners or endless sacrifices to the God of Underpants. Of course, we work like very enthusiastic ants to maximise health and minimise distress. Of course, we are constantly working on goals of so many kinds that our heads spin.

We want our son to have every possible chance for happiness and fulfilment and success. That goal must be inclusive of the fact that he is autistic. Achieving that goal will come with a fair size serving of funny walks, slabs of TV show scripts and the odd collection of merchandise. It will hopefully also come with better immune function, less toxic overload and a brain that sends more reliable messages to his body. That would be awesome, and I'll work my ring off to make that possible.

But the fact that Billy will likely continue to look different, sound different, think different... that shouldn't come into our measure of success. There are reasons for that difference that we don't yet understand. We can't let anything distract us from trying to understand what those reasons are.

This is really the essence of what Billy has taught us.

Normal is a fallacy. It's a mirage. It's something we think we're heading for, without ever really knowing what it is. It taunts us as adolescents. We mimic it as we age. But our son was born without an inbuilt 'normal GPS', and it's toughened us up. We have thicker skins and bigger hearts than we did before. We have x-ray vision, supersonic hearing and a renewed passion for finding solutions and answers.

Some days, I need a reminder to wear these gifts on the outside like Superman's undies. So what if they are a little embarrassing.

Every day is a win for my kid. He climbs a mountain to achieve things that other children do without conscious thought. He manages to joke when the world hurts him with weapons that are playthings for his peers.

I don't think this is a question of embracing neurodiversity or not. I think it's a question of focus.

I'm not aiming for my kid to be normal. I'm aiming for my kid to be capable. I'm aiming to be able to leave this world without the fear that my son will be a natural target. I'm aiming for a world where he's able to make choices for himself, without instant judgement or misinterpretation.

And this requires the world to meet him half way - to open their minds and their hearts in the same way we, and so many other parents have done.

Perhaps it would also help if we all wore our undies on the outside more often. Just so Billy can have the odd smirk at the 'normal' folk in the same way they smirk at him.

I'm at Hopeful Parents...

2011-03-06T14:03:00.000-08:00

Click through to Hopeful Parents if you have the time.

I've had some thoughts about parenting and cheetahs (not parenting cheetahs, that would be way too pointy). Other people have thought much more significant things.

Sensory house hunting...

2011-03-05T00:55:00.000-08:00

This week we sold our house.

We got a great price and we are very lucky to have done as well as we did. We're looking forward to a change. But, it's definitely worth a quick moment of reflection on autism, SPD and what home does and can mean.

First, there's the process of preparing your house for sale.

We don't use any cleaning chemicals in our house, as we know Billy's toxic load is quite high enough. We use essential oils, water, bicarb, vinegar and elbow grease. I've joked through this whole process that I see why 1950s housewives had those teeny tiny little waists. OK, so the easily available pharmaceutical speed may have helped, but a lot of it has to be sheer housework sweat. Our house had to be uncluttered, shiny and non-stinky twice a week for the last month and a half. That meant wiping, dusting, scrubbing and sweating through a really odd late summer heatwave which curiously hit temperature peaks on a Thursday evening and a Saturday lunchtime - our open for inspection times.

Then there's explaining to a seven year old autistic child why people are entering his house (and playing with his trains) when he's not there. Twice a week. And while we're at it, explaining what 'selling the house' is eventually going to mean, and that it doesn't mean today but soon this house will be someone else's, and no they are not going to knock it down, but no we won't be there anymore we will be in another house and yes you can have a green bedroom in our new house (so no we can't rent we will have to buy) and yes you can probably have a turtle but no it can't live in our tadpole pond because we won't be living here anymore....

Exhausted from the world's longest sentence...? Well, it's nothing compared to how we feel about explaining something so very concrete and yet so abstract as an impending house sale.

Then there's the endless search for a new house. Billy thinks any house is fair game, and is always yelling out from the backseat about some random house he's seen as we're driving somewhere. He's very patient and well behaved when we attend open houses, though if there are trains in the house - fuggedaboudit. Then he's a one man mission to kleptomania. He's all about the houses with trampolines, wide lawns and if there's a bean bag to crash in, he's sold.

Today, we went to an auction in the suburb we are keen on, just to get a sense of what the market is doing. It was depressingly expensive, but that wasn't the eye opener for us. That came in the form of what sounded like the hounds of hell barking next door. As the auctioneer was doing his gavel banging thing (using a dongly wooden gavel he oddly kept stored down the front of his very well tailored suit trousers), the barking sent Billy into a sweaty spin. He looked at me, with dilated pupils and said, 'Why do these things hurt me?'

We had brought my trusty iPhone. We had tickled and wrestled as we walked up the street. We had steered clear of as many whimpering babies as we could. But the snarling of what sounded like fifteen pitbulls was too much for us. We left, leaving the bidders to argue in increments of $5K, amazed at how sound aware we have all become since Billy came into our lives. Seriously, not one other person batted an eyelid at the barking. To be honest, never mind the SPD impact, why would anyone buy a house next to attack dog central??

When we got home, we had a bit of quiet time. We fed the dog, and watered the garden and had a little ferret around our favourite spots in what will soon be someone else's house.

And in that time, I came across a bunch of reasons why I secretly don't want to move at all.

There's the sandpit where an undiagnosed two year old Billy would spend hours staring into the cascading sand he would drop in front of his face. We soon learned to hide trains in the sand so he would at least challenge his sensory defensiveness, and at best advance his fine motor strength. We added water, and dirt and sticks and stones. We welcomed the dog in, to increase the chaos quotient (Scruffy magnanimously complied, especially in his puppy years). We built the Island of Sodor again and again. We blew bubbles and traced their patterns in the sand. We counted and sang and laughed, and soon enough, Billy stopped sifting and started building, creating and expanding his world.

Then, there's the frog pond we built with our own hands, and populated with tadpoles from the garden of Billy's first real friend. Reuben and his siblings showed Billy the meaning of teamwork and uncomplicated motor skills, as they all captured a cake tin full of wiggly tadpoles, snails and guppies. Back at home, we made playdoh frog statues and sat them on the pondside rocks to keep the taddies company. We fed them frozen lettuce until the pond plants kicked in. We watched them grow legs and lose tails. And every night, we listen as their great-great-grand-froglets ribbet through the sunset.

Finally, there's the inside of the cubby house where we would hide and paint. We hid because the kids next door always wanted to play in our backyard but Billy was terrified of their pure child exuberance. We painted because that's what kids do, and Billy showed zero interest in those peak pre-school painting years. So, when I say 'we' I use the term creatively. For the longest time, I painted and Billy labelled. Over and over. And over and over. The entire carnival of animals from David Attenborough's Life of Mammals is represented on the inside walls of our cubby house. Actually, when I say 'represented', I am also using that word creatively as well. Let's just say that while I was hit with the 'string words together' stick, the fairy holding the visual arts stick must have been off smoking somewhere. I cannot paint to save my life. Thankfully, Billy has a photographic memory, and once we called the brown blob a gazelle, it was a gazelle for life.

One miraculous day, when he was three or so, Billy stuck his chubby hand in the paint tray and made an arc shape in the air. He said, 'wain' in a tiny voice as he waved his arm in the air. I sat with my knees up near my ears (cross-legged in a tiny cubby house) thinking 'Do we know someone called Wayne?' and Billy showed me his multi-coloured hand and waved it in front of my face again. 'Waaaaiiiiin...' he said. I was still going, 'Is he calling me vain? Cramped up in this cubby house? Man, he's tough!' when Billy's hand hit the bottom of the 'creature' covered wall. 'Waaaaaiiiiinbooow' he said, as he painted an arc of colour over the animals. His other hand touched the animals. 'Day haaapee!' he yelled.

He painted a rainbow, and he named it. Not repeated it. He named it, and he talked about it. There is no rainbow in Life of Mammals, he just thought a rainbow would fit the picture. It was the first step in a journey that continues today. The Billy journey, out of himself and into a world where animals need rainbows to be happy.

In four weeks time, I have to leave that rainbow for another child to find. I hope they like it. I hope they feel how important it is. Unfortunately, they probably won't understand that the rainbow is protecting a menagerie of mammals, because the animals look like the marks on the sides of a Quarter Pounder box.

It's daunting and exciting in the same breath, to be moving on from this place. It's autism house. It's where we used the word for the first time. It's where therapy started. It's where we received the diagnosis. It's where we cried and sucked it up and started fighting.

It's time to move on.

We own the diagnosis now. We own the journey now. Unfortunately, we don't own a house anymore... but we're working on it (one trampoline at a time).

Reasons to be cheerful...

2011-02-27T15:07:00.000-08:00

There's been a bunch of stuff going on around here that has made me sad. So today, I thought I'd focus on the positive.

Positive Things About Living With Autism by Valerie (42 and a half years old)

1. Grocery shopping is relatively simple.
There are no real mysteries for me when I shop. I know what I need to buy to keep the boy fed. I know what I need to try to push the boundaries a bit. I know what to stand in front of and go, 'What child eats chickpeas anyway???' (that would be the chickpeas). I read the Sunday papers and I see the recipes for 'Kids Lunchbox Lovelies' featuring avocado, tuna, coriander and lentil wraps and I think... thanks for that.

Let's be clear here. Autism eating, for the uninitiated, is a curious mix of the sensory, the familiar, the thank-god-it's-nutritious and the very well advertised. As far as I can work it out, it's about what Billy believes will not kill him. It's not a matter of us sitting around as parents and thinking, 'Phew, all he wants is McDonald's Nuggets, that makes things easy!' Not by a long shot. Our cupboards, like most autism family cupboards, are full of 'ba-bow' foods. Things we tried on the basis that they were nutritious, other kids ate them and they were related by colour/texture/smell to something our child actually eats. Our compost is like a Whole Foods catalogue.

All is not lost, though. Because one of the brilliant things about autism is just when you have given up, your child will shock the life out of you by picking up that coriander and spatchcock sushi roll and eat it. Looking at you all the time like they were born with a sprig of coriander in their tiny little hand. Also, maturity brings the helpful concept of bribery and corruption. In our house, we are now able to say, 'Eat two pieces of pear, and you can play The Simpson's Game. No pear. No Simpsons.' Thankfully his receptive language wins over his gag reflex. And sometimes, you can sneak more fruit in using advanced mathematics (hang on... if I take one piece of pear away from two pieces of pear, how many are left? One. Well, you agreed to eat two, so here's two. Bang! Eat these two, then The Simpsons. Confused? Me too. But he ate more than two pieces of pear.)

A message of hope? You may have child like my wonderful Aspie nephew who is a sensory eater. His calming food of choice? Crunchy raw vegies. Seriously.

2. Entertainment is not a complex prospect
Let me qualify this by saying, it's not that I believe autistic children are not capable of involving themselves with complex forms of entertainment. Far from it. The positive here is that your child is likely to know exactly what he/she wants to do. Autism makes it slightly easier for the parents, because whatever the love, it's likely to be a deep and specific love.

For us, the first love was Thomas. The Tank Engine, not the saint or Edison. It didn't take long to work out that no amount of colourful building toys or Wiggles DVDs were going to distract him from his little blue engine... or the green one, the red ones or any of the others. So, we bit the bullet and used the engines for good. Thomas zoomed in front of the OT's scooter board, annoyingly demanding a bunch of crossing the line action as he went. Percy was covered in shaving cream more times than a little engine should be, in an attempt to break down sensory barriers. Poor Gordon and Henry spent a lot of time hidden in the sandpit/rice box/ball pit, needing repeated rescue missions.

It doesn't have to be branded, licensed toy hell either. Many friends of mine have children who love rocks, string or science experiments. Again, from an NT point of view, it's easy to think we should be teaching our kids to love a diversity of activities. And to that, we autism parents say, 'Would you like to be the one who teaches my child that? It would be awesome if you could take that one on for me.' And while you do, I might write a PhD, build a house, split the atom or have a Sleeping Beauty style sleep. Because that's how long it will take.

Embrace the beast, I say. You may be slightly bored, but your child will move forward faster.

3. You are among friends
Autism does not discriminate. It hits all sorts of families. Whether you meet those families in real life or online (or both), it will not take long for you to understand that their support and understanding can change your life. Reach out. Someone will grab your hand. I promise.

That whole 'a problem shared is a problem solved' thing is not as old fashioned and granny-fied as it sounds. I never thought I would spend my time typing my thoughts about poo or ways to put t-shirts on. But I do, and when I do, I learn more about how to do it myself. In a community of solution seekers, we are all better off. Among friends who have faced similar challenges, we can empathise and understand in a way that the rest of the world cannot. It's not so much about having degrees (though sometimes they help), it's about the wisdom and compassion that comes from having your heart ripped open and left open.

If anything, since autism came into our lives, I find myself looking at people who have not faced something as confronting as disability in their children with a form of pity. It's a profound experience that lifts you (if you allow it to) out of the mundane and into a constant state of transformation. It's an active kind of life, for sure. And though I would not wake up screaming for it in the night, I welcome it for the positives it brings.

There we go. Happy things. Now, if you will excuse me, I must return to the dark side. I'm trying to work out what Thomas the Tank Engine can teach me about legal campaigns and legislative reform.

Cooking up another theory...

2011-02-22T18:47:00.000-08:00

Feel free to keep on clicking, this might not make a lot of sense.

Here in our protected little home learning world, I've been thinking about trust. About the biological nature of trust. And about how that manifests into what we see as autism, especially here on the HF/Aspie end of the spectrum (though I'm almost sure there's a relationship right along the spectrum).

I'm going to throw a few phrases out there, and then try and rein them in again - some thought crochet, if you will.

I'm thinking about fight/flight/freeze. I'm thinking about safety. I'm thinking about thinking. I'm thinking about the box that is the moment and the ability to think outside of it.

And it seems to me, for Billy at least, that 'big picture' it's all about trust.

It's like autism, for Billy is a biological lack of trust.

He lacks the ability to suffer the slings and arrows of everyday fortune, never mind the outrageous stuff. When his sensory boundaries are violated, it takes the moving of mountains to get him back into a place of calm and trust. It barely matters who you are - stranger or most intimate of associates (ie. me), if you sneeze/cough/scream/bark (OK, I don't bark a lot, but Scruffy does), then you join his crap list for a fair whack of time.

We are incredibly fortunate that Billy's extreme responses are very rarely meltdowns, or our lives would be truly traumatic. Billy doesn't melt down, he shuts down. He literally shuts up shop. If he can, he will run away (traffic, be damned). If he can't put physical distance between himself and the person who makes the noise, then he goes inwards. Hands on ears, eyes closed, foetal position, as close to the floor as he can.

He does what any of us would do when we've had the life scared out of us.

The only difference is that it's everyday life that scares Billy. And, for some odd reason that I find very hard to comprehend, that makes it OK for people who are not Billy to question the validity of his reaction.

'Hey kid, sneezing is totally normal, why would you react like that over a sneeze? Plus, you are just a child... grow up, get it together, pull yourself out of it.'

He can't pull himself out of it, just because people might want him to. If it's possible at all (and let me tell you, we've been working on this for seven full years), it's got to happen his way, in his time, in his body. Chemically. Biologically.

It has always seemed odd to me that autism is considered a mental disorder, and it seems even more odd that mental disorders are considered principally behavioural. Like you can learn your way out of them.

I'm not discounting the value of therapy, of any kind. It's awesome stuff. Critical thought, experience, evaluation and learning are brilliant things. I see change in Billy all the time, in response to targeted therapy and to experiences. For sure.

So, am I being naive to think that both the original behaviour and the change have a biological basis?

Repeated lived experience (the 'chuck them in the deep end' mentality) may well be the best (and most convenient) way build trust in a neurotypical child, but the longer I live in autism world, the more I believe that it is not high on the effectiveness scale for Billy.

What does work?

Time. Compromise. Sensory work. Sometimes... nothing.

Some days, it's a little depressing to have to accept that.

It's time to get my trusty teaspoon, and start moving that freaking mountain again. It's unlikely to disappear, but it'll make change for sure.

In the meantime, we'll work on it here in sneezing free, coughing free, barking free world. And, for what it's worth, stifling all those things is a quite the challenge. Trust me.

And if you can't trust me, trust Scruffy.

ETA: first study uncovered. My digging spoon always comes up trumps!

ETA 2: another one. I may not sleep tonight.

If you thought about it, you'd throw up...

2011-02-17T02:27:00.000-08:00

This week we started Distance Education with Billy.

Distance Education, in Australia, is like homeschooling but with the full supervision of the Department of Education. It's a test for all of us. On a bunch of levels.

First up, I have to say that my son is a truly amazing child. The Mummy moment will pass in a jiffy, I promise, but really...

Up until now, our Mummy-Billy interaction has revolved around food, poo and play. All with a context of love (foremost) and therapy (always in the front of the planning and the back of the mind).

Now, for four hours a day at least, it's flat out learning. Arbitrary, just do it, kind of stuff. His little brain is processing a mile a minute, and let's be very clear, his brain is not naturally built for that kind of action. His tiny fingers are shaking with the penmanship pressure. His core is quivering trying to hold his head and his heart upright and together.

And he's doing it. Each session gets a little longer than the one before. Each answer comes a little quicker than the last one. Each time he speaks, it's a little louder than the time before.

We have a long, winding, bumpy, mirage filled, pot-holed road ahead of us, for sure, but we're on it together. We're a team.

Now, I need to do a bit more teacher sucking up.

All you folk out there who work with kids on the spectrum, I take my hat off to you. Therapists, teachers, principals, special ed people... teacher aides in particular, you guys earn your money. This is not easy.

It takes patience. It takes flexible thinking. It takes a lot of eraser work, lots of copies of whatever you are working on, lots of fiddle toys, lots of quickly assembled concrete materials, lots of bribes, lots of breaks, lots of promises, lots of heart and lots and lots of time.

No wonder schools are freaking out around the world. This is heavy duty stuff. One adult to one kid gets the job done. Just. But who can afford that kind of ratio? Unless you are homeschooling (and to be honest, talk to me in three months time when my increasingly limited ability to earn actual money is hitting us...)

No wonder autistic kids are left to amuse themselves when the rest of the class are working on group activities.

No wonder people raise their eyebrows and question whether all these kids being diagnosed are really autistic.

No wonder the potential of ASD kids in mainstream classes is leeching through the floorboards in schools all over the place.

If the will is there, and it's a big if, then the resources are likely not. Even if the funding is there, it's not enough. It's not enough pay for such a huge job. At least in Australia, it's not. It's a vicious circle, and I am not willing to let my kid get chomped up in it. It's wrong.

I feel the size of a mouse right now (and if you know me IRL, you will know I am not even remotely mouse-like). The world of formalised mainstream education is lumbering along beside me like an elephant. By hanging out in our Distance Ed mouse-hole for as long as we can, we're avoiding getting squished by those big grey legs. At some point, we have to venture out into the clearing again, and I'm hoping to hell we find out the elephant is a buddy and not the galumphy, insensitive, mega-mammal it seems like right now.

This gig is tough.

I can see my kid is waaaaaaay behind his same age peers right now. Comparisons between children may not be universally useful, but when your child is presented with the correct age curriculum and he is missing huge chunks of the most basic of basics... it's sobering to say the least. He has a very high IQ, and he has natural talents, but the gaps are gi-freaking-normous.

I made a choice, and it was the wrong one for his academic development. It was the right one for lots of other reasons but the wrong one for learning. If I was forced to drop him into a mainstream school right now, he would be lost in the churning foam. Actually, being the sensory boy he is, he'd probably quite like being bumped around by foamy water, but that's another story.

For now, I love how he's responding to 1:1 teaching. He's trying. He's engaged. He's proud as punch. We've brought in the services of a trusted buddy to help out. This buddy is a trainee teacher, but more than than he's a kindred spirit - a soul mate of Billy's, a careful guide. We're hopeful that will start the bridging process from the Mummy mousehole to the classroom clearing of the future.

We may have made another mistake, who knows? Right now, it seems like a slightly terrifying but good, safe, enriching kind of option, but... so did our last choice and that ended up in a giant pool of crap-flavoured custard.

And seriously, if you think too hard about that, you will throw up.

In the aisle of the supermarket...

2011-02-11T02:03:00.000-08:00

This afternoon, in the supermarket, Billy and I ran into his old pre-school teacher.

She recognised Billy, before she recognised me. Oversized tick number one. She greeted Billy before she greeted me. Gigantic tick number two. She didn't bat an eyelid when he retreated behind a freestanding display full of chocolate bunnies with his hands over his ears (a baby was having a tantrum over said bunnies and Billy needed a chocolatey place to hide).

This poor teacher had a hell of a job dealing with me. Speech and OT sessions were always Billy and I together. Early Intervention was Billy and I together. Pre-school was the first time he was expected to spend time somewhere without me. And though I put on a very presentable front, neither of us were happy about it.

I'm not sure why Billy is such an attached boy. Well, I have a few theories but no evidence (which, in autism world, means I have no freaking idea and may as well be wearing a colander for a hat and bedazzling my kid with crystals). Not that there's anything wrong with that.

I see that I am Billy's spare brain. His safe zone.

He lives in a constant adrenalin bath, spinning somewhere between flight and freeze on a hourly basis. Since he was a clump of cells, there's been me. Even when I've been cursing yet another sacrifice to the God of Underpants, or briskly forcing him past a crowd of cranky toddlers in a coffee shop queue (mostly minus my much needed latte) or, in the unquestioned worst moment of our lives together, holding him down with the full (substantial) weight of my upper body while a trainee doctor repeatedly attempted catherisation. There's always been, (and for as long as I can bargain with the boogey man) there always will be, me.

The other reason Billy might not want to leave home without me (I am AMEX Mummy!) is that home is controllable.

Sound, particularly surprise sound, is Billy's nemesis. Crying (particularly from babies, but really from the mouths of anyone) is Perry the Platypus to Billy's Doofenschmirtz. Funnily enough, we don't have much crying in our house, and a remarkable absence of babies. So home, in Billy terms, rules. We do have the occasional moment when the dog barks when someone comes to the door, but after watching re-runs of It's Me or the Dog today, I think I may even have that one licked. Home is a haven from hyperacusis. It's a place where the adrenaline can bugger off and do whatever it's supposed to be doing... inspiring powerlifters or naming nightclubs or something.

Beyond that, I'm guessing Billy isn't massively keen on independence because the world is full of confusing, overwhelming, indecipherable, uninteresting, fast moving, irrelevant stuff annoyingly sandwiched between the good stuff. The world, to a kid like Billy, is most easily encountered for the first time, at arms length. Hence the love of DVDs, YouTube, documentaries, video games and endless hours spent quizzing Mummy and Daddy about their recollections of DVDs, YouTube, documentaries and video games. Then there's the other time, spent in an alternate dimension repeating, telling stories and recreating the scripts from DVDs, YouTube, documentaries and video games. The boy is quite content at home.

I've got Temple Grandin sitting on my shoulder as I type muttering, 'Push your kid, Mama...' And I'm listening, Temple. I'm listening. Given how profoundly his neurological safety net has been tinkered with (by nature, nurture or tiny wee pixies with a wicked sense of humour) I just want to push him in his own time, in his own way. I want him to give us a sign. Preferably one that doesn't come with heart palpitations and gigantic dilated pupils. He shouldn't have to do anything, just because society says it's time.

And that's where beautiful teachers like Julie, Billy's pre-school teacher shine like jewels that even I would like to own (have I mentioned I'm not a big fan of diamonds or flowers? Chocolates, on the other hand... sorry... back on task...)

Billy's first attempt at pre-school ended in hospital. I'd publish a picture of him in the days before he was admitted, but to be honest, I don't like looking at them. My tiny wee three year old looked like he was in a war zone. His hands were never less than half way to his ears. He clung to the furniture at the edges of the room, unable to focus well enough to let go. His eyes were like saucers, he was always shiny with sweat. I know this, because I was there. Every moment. I worked my way to the opposite side of the room to him, but I was always there. And Julie was OK with that.

Six months and a long stretch in the neuro ward later, he came back to pre-school. And so did I. And Julie was OK with that. She taught me her mantra, 'Small, manageable steps', and encouraged me to repeat it as I moved from the edge of the classroom, to the kitchen to the stairway to the car park, into my car and finally, home. It took a month or so, and Julie was OK with that.

She was OK because she's been doing this stuff for a really long time. She's taken countless Billys and Valeries through the same journey - just along a different path and at a different pace every time. She was learned and trusting and trustworthy.

Julie is a jewel among teachers. Among people. Even though she was exhausted, today, after a long day's teaching, she had the time and energy to greet us like family. She was interested in how her family had fared since she'd last seen them. Even if she didn't really care, she did a damn good impersonation of it.

When Billy emerged from behind the Easter display, he exchanged a few shy words, and clung to the trolley. But he wasn't sweating, and his pupils were fine. He barely needed me at all.

Except for when we got to the checkout and someone had to pay for the giant pile of chocolate bunnies he'd snaffled from the display.

It's Hopeful Parents Day...

2011-02-06T00:29:00.000-08:00

Not in the official Hallmark Card-y kind of way (though that's not a bad idea right there...), but in the it's-the-6th-of-the-month-so-i'm-blogging there-today kind of way.

Hopeful Parents is a brilliant resource, and a great place to read this month's theory about Thomas the Tank Engine and his possible medical qualifications.

You should probably also read some other people's stuff while you are there.

It will be way more sensible.

Home is where the learning is...

2011-02-02T03:12:00.000-08:00

While we wait for issues in our lives to resolve, we are teaching Billy at home. It may last a couple of days, or a week or longer... who knows?

I know lots of you are already homeschoolers. I know lots of you are autism parents. If you are not either of these things (or even if you are), indulge me for a moment.

I'll start by saying, I can see how homeschooling has its drawbacks. There's the social questions. There's the lack of consistent peer modeling. There's the general challenge about what the hell are you supposed to know what teach. Never mind how in hell will I ever have a haircut again?

But, it seems right now, to have a LOT of benefits. For all of us.

We are very fortunate that Billy has a very easy-going temperament. He is loving and joyful and connected. Most of the time. These make for a pretty solid atmosphere in the house. We are also fortunate that Billy is relatively bright. We have the odd Rainman moment (as in the freaky, how-does-a-seven-year-old-even-know-that-fijian-banded-iguanas-exist kind of moments) but generally, he's keen to find stuff out. He loves what he loves, but he's happy to find out random stuff just for the hell of it. He's kind of like both of us in that regard.

These last couple of days, we have done art projects. We've read aloud and asked each other questions on what we've read. We've visited the pool, the park and the playground. We've written stories and emails to Nanna. We've cooked, we've done maths, we've researched, measured, speculated, designed, planned and reported.

I'm sure we will hit walls all along the way, whatever schooling journey we choose for the next part of our lives. I'm definitely sure it will be challenging. I'm certain I will struggle with the responsibility of big and small picture education issues. Hell, I'm always struggling.

But, what we have in our house is a well child, a happy child, an engaged child.

He is suddenly planning projects, and strategising how we could best find an answer to his questions. He is seeking resources on line and on the bookshelves (should we tell him we are going to pack them away soon??). He is laughing. A lot. His lists of anxious protective behaviours ('I will not have good dreams, or scary dreams, or bad dreams, or nasty dreams...') are getting shorter every night.

I worry about his friends. I worry for them, and for Billy. I miss them, and Billy misses them, and I know (and he doesn't) that we won't see them every week day like he has in the last two years. I worry that he misses the deep value he gained from building trusting, loving relationships with credible, loving, compassionate adults who were not related to him. I worry that he will lose his ability to be socially independent. I worry that he will lose the buffer zone where he learns how to be a kid by watching the consistent behaviour of the same group of peers every school day (and the odd birthday party weekend). I worry about the loss of community, for all of us.

Then I remember that this is not forever. And even if it is, we are consciously (painfully) aware of the challenges. I know we have a team of therapists, and doctors and friends who will help keep us real and respond to our need for connection and consistecy. We can and we will make the best (if not always the 'right') decisions. We have brought him this far, and we will continue the journey with love and honesty and white-knuckle-adrenalin-pumping-reality-checking integrity.

I will not miss the ignorance. I will not miss the judgement. I will not miss the misinterpretation or the unspoken assumption that we are less than complete as a family, or as individuals.

I know I've said this before, and I will say it again. (nooo... I hear you cry)

I would not wake up screaming for it in the night, but... having a child with special needs, to me, is an exquisite gift. It is a life circumstance that challenges and defines and strips away extraneous layers. It's equal parts terrifying, confronting and affirming.

I know I am alive. And I know how important it is that I value and live each and every moment with integrity, honesty and passion.

In the words of Mr T, 'I pity the fool'... who doesn't get it... or who questions it, without an inescapable reason to understand it.

And, speaking of Mr T, now I need a Snickers.

I'm not sure I like photos...

2011-01-28T04:05:00.000-08:00

We've got our house on the market right now. We are completely crazy for doing it, but we're doing it now, so we just have to suck up the crazy and go with it.

In the process of turning our dog hair gallery into a showable house, I've found a bunch of old photographs. You know those floppy papery things with pictures of things on them. I had to google it, to be sure what they were.

Billy was born in 2003, and for the first five months of his life, we took pictures with old fashioned film cameras and sent them off to be developed. He'll surely laugh at us when we tell him that in a couple of years time. Since we went digital, we've gone completely nuts, and at last count my iPhoto had close to 10 000 photos in it. For the first few months, though, we chose our kodak moments carefully. They were expensive.

It kills me to look at those photos for a couple of reasons.

One reason, I've spoken about before. They mock me with their wide eyed lack of autism knowledge. Billy didn't know. We didn't know. Nobody we knew, knew. We were just drinking in the wide eyes and vast smoochy cheeks of the wonderous being we had created. And I know everyone says it about their own child, but boy was he cute. He looked like a cabbage patch kid. But actually cute. And we hadn't signed his bottom. Yet.

The second reason is even more insidious, though. It's because he's perfect. These are photos from before we knew to be worried about him staring intently at leaves blowing in the wind. In every single baby photo before twelve months old, Billy stared straight into the camera. When he was old enough, he smiled. Now we take literally 30 shots, so two will have managed to catch those beautiful eyes in full contact. His little baby arms are relaxed, rarely caught in the spasm-y jerks we see now.

In those photos, we are new parents full of joy and hope and pretend bravado about the amazing journey we'd just started.

Now, we're different too.

Sometime soon, I'll be able to talk about what's been going on in our lives. For now, all I can say is that our bravado has been eroded, our hope is clouded and our joy is now for us alone.

I never really thought about how I would appear as a parent. I just thought I'd take each day as it comes and do what came naturally.

Then, along came autism. Maybe because of who were were, maybe because of what we did or maybe because of a combination of the two... along came autism. And along with autism came the stares and the judgement and the people standing a respectful three feet away from us just incase they catch it from our spit. Along came the need for us to skill up fast in fields we didn't even know existed - we changed the way we talked, the way we thought, the way we drove, the way we cooked, the way we cleaned, the way we holidayed, listened to music, spent our leisure time... you name it, we changed it. We continue to change. Every single day.

Why? We change because we want Billy to live the best life possible. We've learned the way to do that is to keep him feeling safe and secure. When he is safe, he learns. The world is not really built to keep him on an even keel - it's noisy and fast and verbal and smelly. So we work like ducks to keep the balance - flapping our feet like crazy, while attempting to maintain some kind of decorum up top.

This does not make the autism go away, it honours the autism. It helps translate the world into a form he can understand and accept. And so, it helps him be a part of the world. He learns things that would otherwise wash past him in a blur of sturm and drang. We do not believe in 'chucking him in at the deep end', we do not think he 'has to learn sometime'. We think he will learn in his own time.

As with everyone else on the planet, the more he learns, the more he can learn. But that doesn't subsume the principal impairment. He is differently wired, unique, autistic. And unless the deep brain stimulation thing John Elder Robison is doing, or stem cell transplants happen or some rabbit placenta miracle cure comes our way... he will always be autistic.

We're fine with that. We're not at peace with it, but we're accepting of it. We're living it. It just is.

What we do not need is for our lives or his life to be interpreted by people who choose to avoid the change and understanding we have lived through. We do not need pity. We need respect.

To anyone who is getting ready to launch themselves into the parenting adventure, I would say, open your eyes, open your hearts and jump on the ride. You do not know what you are getting into. You do not know what you're going to get, or how you are going to get it. You are going to need every last bit of love you feel for your partner and every bit of support you can get from your family. It's not going to be easy, it is going to test every last skill you can dredge up from every learning experience you've ever had. But it is going to be amazing.

Even if you discover your child has a disability. Like we did.

If you do end up living a life like ours, remember those times in your life when you thought change was necessary. Real, cellular level change... when you could see that they way things were working was going to end in disaster... when you felt like screaming out to stop someone from really seriously hurting themselves.

That's the mental state you will come to accept as normal. You may as well get used to it early. Make friends with it. Be one with it. Have a t-shirt made.

When pressure comes from the outside, you will need to remember what defines you. Not stasis - not the way it always happens. What will define you is the need for flexibility, empathy, mind-reading and change. That and pure, joyful love.

Also, stupid decisions like selling your house. They may come to define you too.

Though from where I'm standing right now, I'd avoid that, along with getting a long haired and very large dog.