Hauling over the coals...

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...

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...

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...?

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...

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...

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...

... 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).