Sunday, May 30, 2010

There's always something to learn...

On a little Google journey this afternoon, I found this paper.

You can download it for free, as a pdf, if you want to read it too. But the introduction is almost enough to make me feel a little less frantic about where we are in our understanding of the 'a' word.

That academics are urging us to consider that Kanner's original classification in 1944, might need a fresh look... that can't be bad. That they are also open to examining the biological nature of autism is, in my mind, a step in a useful direction.

It makes me feel less washed away by the power of the 'science' of those with the most marketing power. It gives me faith that some people are getting funding to consider issues beyond the ones that retain either the medical status quo or the best situation for big business.

One of the conversations I like having the least, is the one that follows when someone says, 'Haven't they debunked the whole vaccine/autism thing?' I'm always struggling, backpedalling, trying not to alienate the other person with my 'crazy hippy' thinking, but also keen to change their minds.

I try to say, proof is relative, it all depends on your hypothesis. I try pointing out that there's a lot at stake in anyone in any position of responsibility accepting that vaccines might have damaging effects on anyone, least of all children. I try asking them how they would feel if their child changed overnight, lost skills, slowed in their development, stopped connecting with them. I try. I try. I try.

But I can't prove anything. Really, I've come to believe no-one can. I've come to believe that it's science and not the law that is an ass.

Not so much the science itself, but the people surrounding it.

I feel sorry for Andrew Wakefield, because I believe he's on the right track. And it seems a bit like he made a couple of fundementally stupid mistakes. So now, all the work he's done is lost. I can't see that as a good thing... especially not for us - the families swimming down the river of the early 21st century autism.

I wonder why the autism community isn't listened to. I wonder what people are frightened about. Are they afraid if some of the voices in the arguments about autism are correct, their children might be at risk too? It makes me sad that we, as a family, are something people might fear.

It makes me sadder though, to see the autism community fight amongst itself. Who does the 'right' therapies? Who is a fake? Who could be so stupid as to try... (name an intervention)? Why would that group say (name a statement about anything to do with autism)? Why does that person have the ear of that doctor/politician?

Even though those involved would disagree for sure, in my opinion, that in-fighting detracts from the challenges families living with autism face every day.  Even though I've got strong opinions about what's real for us, and what's worked for us, I don't want anyone to think I'm judging or degrading their decisions. Or, more to the point, I'd rather they felt OK about telling me to pull my head in and respect their choices.

It's raw for all of us right now, and the feeling that we're somewhere close to a crest of a freaky river wave is never far from many of our minds.

I hope that 20 years from now, we'll all be slapping our heads saying 'Dowp! It was THAT!' I hope we will know why it's being reported in a Queensland newspaper that the autism prevalence rates are doubling every five years, and that 2% of the state's school population has a diagnosis on the autism spectrum (not the 1% that's accepted as the new shocking prevalence rate).

And I really believe that the only way we will get there is to keep reading, keep asking, keep studying, keep trying to find out what the hell is causing so many kids to fall at fundamental life hurdles.

So I'll read the Swinburne papers, I'll read Wakefield's new book, I'll read the news on Autism Speaks and anything else that comes my way. I'll talk to my friends and I'll talk to my foes. I'll just keep trying.

I know I'm not anyone. I'm not in a position of power or influence. But if I'm supposed to be keeping my kid safe and healthy, then it is my job to understand as much as I can about the condition with which he is living.

There must be something to learn.

Friday, May 28, 2010

Is there ever a time when autism isn't a factor?

Today we went back to the love of Billy's life - Dr Victoria.

We went back because the cough part of the croup just won't go away, and I (as you know by now) have a brain that spins off into 'could this be very serious' land very easily.

Turns out, even though he is coughing so hard he's making himself vomit... he's just fine. No asthma, no chest infection, no nothing except the same old sensory issues we should be used to by now.

He feels his throat tickle, he coughs. That makes his throat tickle, which makes him cough. Which makes his throat feel odd, and so... you can fill in the rest (but if you are struggling, it generally ends in vomit or gagging at the very least).

I can live with the fact that it cost me $60 to find out he's got a viral cough that may go on for 4-6 weeks (are you kidding me?) I can live with the fact that there's no lurking pneumonia (very good news). But what I struggle with is the fact that he could possibly be coughing himself stupid for a month, and there's nothing really that we can do to calm it down.

He's come so far in regulating himself, understanding when he's about to be overwhelmed, withdrawing and re-grouping... and then little gems like this just pop in for fun.

There's no point in saying it, but it's just not fair. There are worse issues for sure, but some days, I think people with autism must be the hardiest of the bunch.

Billy has a pretty rough trot some days. It's not always life threatening (though he's had that too...) but it's not often a summery walk in the park either.

Tuesday, May 25, 2010

At least they come one at a time...

The good news is, we seem to have exited poo hell.

Thanks to people much more patient than I (Daddy and Dr Victoria, my new favourite person), Billy has re-negged on his statement of last week that 'Billys NEVER ever have to poo'.

I believe the compulsive repeating of Charlie and Lola episodes may have something to do with the wording of his mantra. I like Charlie and Lola. I think it's funny (for the most part), very positive (almost always) and a little bit left of centre (never a bad thing in my book). But since it seems to have been linked to Billy's decision to cease pooing, I'm not as much of a C&L fan as before.

A bit of a doctor chat, a crazy hi-fibre diet and a some privacy for a growing boy and it's 'Sayonara, pits of stinky hell!!!' No more sacrifices to the underwear gods... woo hoo!!

But we have entered croup purgatory.

Heavy breathing, wheezing, seal coughing, the whole kit and caboodle.

He's got prednisone and Nurofen and chips, and so far so good.

The beautiful part of today, was the doctor visit. We love Dr Victoria. She's respectful and positive and she treats Billy like a human being.

I seriously could have left the room today, as she and Billy had the appointment all covered by themselves. He sat in the chair closest to her and opened the conversation with 'Well, Victoria, I have a problem.' She listened to him, asked amazingly positive and well worded questions and got everything she needed back. She was even allowed a glimpse at the throat - a privilege saved for a very select few on this planet.

I'm proud of him, and even more, I am impressed with Dr Victoria. It restores my faith in the future when I meet people like her.

As we left the doctor, Billy stopped at the receptionist's desk. He said, 'Excuse me, ladies', to get their attention, and when they looked at him, he added, 'I'm keeping my germs right here in my mouth. Don't worry!'

No scripts, no prompts, just little boy chat.

We walked out the door having left smiles on the faces of a collection of women who see a lot of charming six year olds.

Did I mention how proud I am of my little barking seal?

Monday, May 24, 2010

An oldie but a goldie

Sometimes you stumble upon something that articulates something that really resonates... for me, this is one.

In all the furore surrounding discrediting doctors and proving the 'no' case without acknowledging the realities of the 'yes'... this presents a hypothesis that makes sense to me. It makes sense in terms of our lives, but it also validates the range of experiences I hear, read and see as a member of the community of people living a life with autism in it.

It is reproduced with the permission of the author, David Kirby, and was originally published at The Huffington Post.

It's been nearly two years since the release of my book, "Evidence of Harm, Mercury in Vaccines and the Autism Epidemic - A Medical Controversy," and I continue to be vilified by critics who insist that mercury does not cause autism, that autism is a stable genetic condition, and that it cannot be an "epidemic."
I am going to declare a New Year's truce, and announce that my critics are 100 percent correct.
This year, I hope we can ALL agree on one thing: There is no autism epidemic.
Among my most spirited and articulate detractors is a group of adults with autism who belong to a movement that refers to itself as the "neurodiversity" community.
These adults argue passionately that autism is neither a disease nor a disorder, but rather a natural and special variation of the chance genetic imprint left upon human behavior. Most of them, I believe, have what science calls "Asperger's Syndrome," or very high functioning autism.
From their eloquent and well reasoned point of view, autism has no "cause," and it certainly requires no "cure." To suggest otherwise is to brand these adults with the stigma of disease and disability, which is patently absurd given their educational and intellectual achievements.
It's like saying that left-handers or gays are deviant and need treatment - something that reasonable people stopped doing years ago.
So maybe autism really is just an odd genetic peculiarity that yields atypical people whose own set of talents and gifts can lead to perfectly happy and fulfilled lives, with little or no dependence on others for their survival.
If that's the case, then autism has always been with us at some steady, but largely overlooked rate. Growing awareness and better diagnostics have certainly helped us identify and count more people with the condition, who might have been mislabeled as "quirky" or "nerdy" a decade ago.
But if that's autism, then the kids that I have met suffer from some other condition entirely. When I talk about "curing" autism, I am not talking about curing the "neurodiverse."
I am talking about kids who begin talking and then, suddenly, never say another word.
I'm talking about kids who may never learn to read, write, tie their shoes or fall in love.
I'm talking about kids who sometimes wail in torture at three in the morning because something inside them hurts like a burning coal, but they can't say what or where it is.
I'm talking about kids who can barely keep food in their inflamed, distressed guts, and when they do, it winds up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet (no one said this kind of "autism" was pretty).
I'm talking about kids who escape from their home in a blaze of alarms, only to be found hours later, freezing, alone and wandering the Interstate.
I'm talking about kids who have bitten their mother so hard and so often, they are on a first name basis at the emergency room.
I'm talking about kids who spin like fireworks until they fall and crack their heads, kids who will play with a pencil but not with their sister, kids who stare at nothing and scream at everything and don't even realize it when their dad comes home from work.
These are the kids I want to see cured. And I don't believe they have "autism."
Scientists tell us that 1-in-104 American boys are currently diagnosed with some form of autism spectrum disorder. But the mildest, "high functioning" forms of autism have seemingly little in common with the most severe or even moderate cases.
My hunch (and yes, that is all it is) is that most of these kids do not have "autism" at all, and it's probably time we started calling it something else.
American kids are in huge trouble. One in six has a learning disability. Asthma, diabetes, allergies and arthritis are ravaging their bodies in growing numbers. And little of this is due to "better diagnostics" or "greater awareness."
It can only be attributed to radical changes in our environment over the last 10-20 years. There is something, or more likely some things in our modern air, water, food and drugs that are making genetically susceptible children sick, and we need to find out what they are.
Mercury remains a logical candidate for contributing to "autism spectrum disorders," either alone or in combination with other environmental insults. Mercury exposure can kill brain cells. It can cause loss of speech and eye contact, digestive and immune dysfunction, social withdrawal and anxiety, and repetitive and self-injurious behaviors.
So maybe we should leave the autistics in peace and focus on these environmentally toxic kids and what it is that ails them.
Maybe what these kids have is not autism, but something like, say, "Environmentally-acquired Neuroimmune Disorder," which we could call E.N.D. (Great slogan: "Let's End E.N.D.).
Maybe that would explain why a recent CDC-funded study of the San Francisco Bay Area showed that kids with "autism" were 50% more likely to be born in neighborhoods with high levels of airborne toxins, especially mercury. If a second study underway in Baltimore yields similar data, it will be that much harder to defend the "better diagnosis" argument, (other studies have shown an association between autism rates and proximity to coal-fired power plants).
So maybe what we have here is just a semantic failure to communicate. Columbus thought he had met "Indians," and we only recently began to use the term "Native American."
Columbus was not in the Indies, mercury doesn't cause autism, and there is no autism epidemic.
Sad part is, this was published in 2007... 

Saturday, May 22, 2010

Must write.. must write...

Who knew I was one of those people who needs to write, in the same way as I need to eat or shower...?

It's been a big week of writing and reading, and sharing and being so unbelievably amazed at the generosity of people.

I've been gathering stories from other mothers, who share the experience of parenting an autistic child. And the more I gather, the more they offer. The more women who write, the more they want to write. Amazingly, the more their friends and associates and co-passengers on the 'a' word boat want to write.

I've never been someone who writes a journal. I've always secretly thought people (especially girls) who fill in their diaries were a bit weak. There's a nasty secret I've been carrying around for 30 years or so. I thought the whole 'Oh how I love... whoever' or 'blah-blah is a meanie' was a complete waste of physical, mental and creative energy.

But then I started this blog, and then I 'met' other bloggers and then... I started collecting the words of other woman who share some of my experience. Not about lurve or dreams or secrets... about life. The big stuff. At least the stuff that I think is big.

What a snob I am. I am truly a judgmental fool.

Because this week, I've seen the magic that can be unleashed in the words of women - from the lives of women who have faced one of the nastiest fear beasts there is... learning your child has a disability.


It cuts to the core of why I'm doing what I'm doing. It slaps me in the face with my life experience, my life choices and my accumulated life skills. It makes me think a lot about how and why I have arrived at this point in my life.

Where was the point where I thought I could pull off this writing lark? What made me think it was worth pursuing? Why didn't I stop and go get a job in a bank (apart from the unfortunate armed hold-up at the video shop workplace of my teenage years)?

There have been some cracker moments in my writing life.

When a shy outcast kid in a primary school stood up in the audience of a play I'd written by adapting his prose into performance and said, 'I liked my bit the best' and got a round of applause from his peers.

Or when a play I had written was performed at the site of the Port Arthur Massacre, and brought parents to tears when they saw their children laugh for the first time since horrific tragedy invaded their lives.

Or when I saw words I had written being interpreted in song by children whose voices came through their hands...

I've been truly fortunate.

And this week, again, I was humbled by the ability and opportunity I have managed to assume. It's not about the writing, per se. It's about the permission to speak. It's about having a moment to share and to shine. It's about trusting your gut.

This week, I have shared in the hilarious and the hideous. I have laughed and cried and been angered and left dumbfounded and been ultimately inspired...

So, thanks all you women who know who you are. The world will be a better place for your courage and your conviction. That much I know. The trust that you have laced in me is humbling, but the strength that exists in you is even more so.

In the words of someone more wise than I... You Rock.

A few last things.

1. My friend Jenni is a wife and mother, and a teacher and an autistic person. This week she showed me that autistic people need only to have the world understand and need them to succeed.  It is our (the NT and the NT-ish among us) responsibility to open our minds and our practical perceptions. Jenni has gifts that her autism both informs and transcends. She is a human being of great talent and drive. She and I achieved something incredible this week. In doing so, she showed me that autism doesn't impede achievement, if it can be respected, affirmed and embraced. She showed me that skill, talent and passion conquers all. The rest is mere details.

2. Holy dooley, there are some amazing things to learn when you amass the experience of a bunch of people in the same position in life. I hope to heaven it gets into print, and I hope people read it. There is so much to learn about autism, and I believe very much that there is a lot to learn from this collection of stories.

3. He-who-thinks-blogs-are-stupid is an amazing human being. I know I'm nuts. I know I'm unpredictable. I know I throw curve balls all the time. I am unspeakably fortunate to have a back up, sidekick, partner, guide like him.

This has been a hell of a week. Who knows what might happen next week?

It will have to involve a real-eo, tru-leo big pet dragon to top what I've experienced already.

Monday, May 17, 2010

I have a deadline...

I am procrastinating, by ruminating... and I have something to say (funny that...)

I'm working on a project at the moment, which involves lots of people in a similar position to me in terms of autism and parenting. I'm going through lots of heartfelt statements, detailing their lived experience and it's inspiring.

But it's also seriously sad.

It's sad because it seems like the world has very little faith in women and children. What's going to follow is a mass of generalisations and anecdotal, unsubstantiated statements but trust me... unlike Tony Abbott (our Opposition Leader for the overseas folk among you), I'm not making it up right now.

Again and again, I'm reading about mothers who faced derision and judgement when first voiced fear about their children's development. Some of it comes from within the family, and I can forgive some of that. No-one wants a massive issue in their family, and the first reaction is often denial. The nasty, unhelpful judgement comes from the doctors and the teachers.

It makes me wonder what's going on in the heads of some 'caring' professionals that they would dismiss a mother's concerns about their child. What would motivate you to question a woman who spills her heavy heart about her child? What are you thinking she is thinking? And what are you thinking the effect of your cynicism will be... that she'll stop asking...?

Sadly, may women do stop asking. Hideously, their kids can end up struggling through parts of their life, not understanding themselves and not being understood. Being thought of as stupid, or naughty, or bad...

If you don't stop asking, it gets expensive. Doctors visits, new referrals to different doctors, travelling, googling, struggling to understand. Hopefully, eventually someone gives some information that leads to understanding.

It's not always about women being ignored, though. Often there's a pile of denial involved too.

Occasionally,  I hear a parent, quite offended and self righteous because someone dared suggest there might be something spectrum related going on with their child. The tone is almost always the same - like there are teams of crazy autism seekers around the place, picking out perfectly innocent children and labelling them... Like there's something to be gained in calling as many kids as possible autistic.

So... what am I trying to say today? Apart from, I have a deadline and am procrastinating...?

I'm trying to say...

Dear... people, 

It's hard to contemplate the fact that a child might have challenges.  Especially if that child is yours, or closely related to you. 

So, listen carefully and compassionately when people voice their concerns to you. Chances are, they are not attention seeking or making it up. And if they are, they are in need of support anyway.

Watch their children without judgement, too, if you can. See how they navigate their way through their day, how they use their bodies, how they react to their peers. Listen to what they say, even if it's not yet words. Look in their eyes, if they will let you. 

You are not helping by doubting. Nor are you helping by brushing off concerns. 

Just listen, reflect back what you hear, offer your shoulder, don't be afraid of anyone's tears... you have nothing to lose.

And there's a lot at stake. 

Cheers, Valerie  

I'll just pop out and mail this to... the world. That should add to the procrastination nicely!

Friday, May 14, 2010

Eat my words...

So... I spent the day at hippy school today, and it was me that learned a lot.

There were a couple of Billy triumphs (I'll get to those in a minute), but the humbling learning came from the three boys who I had assumed had been trying to humiliate Billy a couple of days ago. We sat down (the boys, Billy, his teacher and I) and had a chat about what had happened.

I won't go into details, but it seems like they weren't targeting Billy at all. I misunderstood. They were genuinely asking kids the question 'do you have a house?' and gathered quite a range of responses (houses, hotels, apartments, flats, two houses...)

Big Mama lion swiped her claws a little too fast. And for that I apologise. Though now that I write this, I'm not sure if I apologised to the boys. Ah crap.

Hippy school is truly confronting, and exacting and inspiring... it's no easy task to be a human being in that environment, and that's what makes the lows and the highs so meaningful.

I stay at school on Fridays and help any kids who want to make films. They set out with video cameras and put togehter all sorts of audio-visual things. There are overly serious news stories, stop frame animations starring C3PO and whacky interviews with chairs and trees.

Billy, amazingly, is not stuck to my side at all. He has his friends to wrestle with and chase. He has his teacher to request 'scruffles' from, and he has choices to make - because it is Free Friday, after all.

Today, he completed a project on Green Iguanas. I write this like it happens all the time. This is totally the first time I have seen him complete a project. It had coloured cardboard and pictures and text he had typed up and cut and pasted. It has a few iguana skin looking decorations on it... it was a project alright, and it's up on the wall in his classroom right now.

You have got to love a school that values the expression over the motor skills. His fine motor skills are not good (although the beautiful beaded necklace he made in the craft room in the afternoon totally makes a liar out of me), and writing is a processing struggle. He spells beautifully (with appropriate 6 year old mistakes like 'vegertibels'), has a great memory and a lovely imagination, but pulling all of that together and making pencil marks on paper at the same time... waaaay too hard. So he types. And he gets the project done.

We do work on the writing, and we will always work on the writing. But the confidence that comes from being able to process your ideas into something that can be shared and understood by others... that's something that drilling handwriting skills just can't achieve.

Kudos too, to the wonderful kids in Billy's class who shared a non-patronising smile as they patched together the word 'IGUANA' from the bendy, big, badly placed letters on the poster heading. It's not patronising because they see the level of information in the project and genuinely go, 'Cool...' and because they have lived experience of how hard he has worked to get those letters looking like they do. One very special child turned to me today, as Billy was writing his name at the bottom of the Green Iguana Poster and said, 'That is the neatest writing I have ever seen!'

So... lessons learned at school this week are many and varied.

1. Stay calm and remember that it might not be as bad as you think.
2. Good teachers are amazing, and work like freaking trojans for their money.
3. Children are not always stinky, evil or nasty.
4. Green Iguanas look like dinosaurs.
5. Necklaces made by small children are always the coolest things. Ever.

Man, am I glad it's the weekend.

Thursday, May 13, 2010

Things I'm excited about...

It's kind of chicken or egg...

I have a little boy who loves a screen. But it's not just about wanting to chase funny looking creatures around virtual worlds (though that is a lot of fun for him). It's about something much more zen. And much more valuable (ultimately).

He loves screens because they do not ask anything confusing of him, and if they do, he's allowed to sort out his confusion in his own way and in his own time. He loves screens because they are full of things he is interested in. He loves screens because he can manipulate them, play with them, master them without needing to decode another human being's communication.

And because he loves them, I love them too.

Actually, I love them anyway and I loved them first... but that's another blog entry.

Most parents are lamenting their children's love of the DS, the TV, the computer, the Wii, the PS2 or 3... not us.

Sure he may spend a little too much time on there in the future... but there's something much more important happening right now, IMO. It's a moment in his-story, in Billy's story.

I'm taking it with both hands. It's a teachable moment, for us and for society.

Simple statistics - If we're talking 1 in 58 boys now, and two years ago it was 1 in 250, then it could be (unless something completely bizarre happens, and lets face it there are bigger problems out there in society's mind) 1 in 20 or less in a few years time. That's a lot of kids (people) who struggle with learning from people. A lot of people who seek the safe zone of screens to extend their cognitive skills, life skills, social skills (will I go on...?)

Let's think about this. If you want to keep on fearing the technology, go right ahead. I understand. But if you don't... man, there's a huge and growing market for innovative, credible product.

I don't have the skills, but I know there are people who do. I'm excited for those people, and I'm excited for Billy... boy, are we in a great position to innovate!

Did the geeks make the Aspies, did the Aspies make the geeks? Will the geeks help the Aspies, or will the Aspies help the geeks? It's like a Shakespearean drama... unfolding around our autistic kids... and I, for one, am really keen to be a part of the action.

I'm guessing Billy will be too, but right now he's searching for videos of Giant Salamanders on YouTube.

Found one...

Tuesday, May 11, 2010

They say, 'be careful what you wish for...'

Stinking 'they'. Who the hell are 'they' anyway?

So, I get to school to pick Billy up today, and overall it's been quite a good day. There have been ups and downs and he's understood most of them.

He has been crashing down people's lego creations (known at hippy school as 'bases'), and people are seriously annoyed at him. He got that. He also understood and accepted the consequences.

I can see the base crashing has a number of interesting elements to it. Bases are the number one cause of tension at hippy school, and so they should be. They are made of lego, so they are colourful and fragile. They are the product of a lot of thought, planning and (often) collaboration. When Billy crashes them, he stuffs up all of that thought, planning and collaboration. It's flat out annoying.

For Billy, it's a huge sensory release (I feel crash, I see crash, I hear crash). The desire for that crash is often related to a game he has been playing alone (today, it was a Percy's Chocolate Crunch game, with a green lego piece playing Percy and someone's base inadvertenty playing the chocolate factory). There's also the fact that by crashing a base, he gets the conversation and interaction he craves, without having to do any hard work to make it happen. No decoding language, no reading faces, no inventing novel words... just immediate attention (mostly of the adult variety, as the kids are over him by that point). Job done, Billy style.

The teachers think there's an element of naughtiness here too, and maybe there is. We don't see it at home much, but then we don't see much challenging behaviour. I'm willing to provisionally accept their reading of the situation...

So, consequences attached, Billy was banned from base corner, and the day progressed. He'd chosen animals to study in preparation for a trip to the zoo. In fact, he chose two. And he'd had a brilliant conversation with one of his younger classmates about frogs. Turns out both of them love frogs, and know 'all the frogs in the whole wide universe'.

Then, as we walked out the front gate and past the front fence of the school, three older boys from Billy's class called out to him, stopping him in his tracks.

'Hey Billy', they called in loud, slow voices accompanied by exaggerated, bright eyed facial expressions (you know the sort you are tempted to use with tiny babies or people with dementia), 'Do... you... have... a... house?'

'Yes, of course.' said Billy, to a chorus of giggles and smirks.

I was standing right there. Right next to them. Probably not the smartest choice these patronising little ingrates have made. I gave them the Mummy death stare, until one said... 'what...?'

Through angry tears, I said, 'You guys need to think very carefully about why you ask Billy questions like that...' and glared some more, until they shrank away.

Things were spinning through my head, as I grasped Billy's hand too tightly, walking back to the car. I'm thinking, Billy's so much nicer and smarter and... and.. and. But it doesn't matter what Billy is, to a lot of kids. Hell, it doesn't matter to a lot of adults. Because the thing they will struggle with, right up front, is the fact that he's different. And, different conjures up a lot of instinctual stuff in people.

Right now, I'd like to hurt those boys. I understand I cannot. But here, in a nutshell is exactly what I fear. These kids are six, maybe seven. And they already desire the power that comes from a cheap shot. They already relish the role of predator, and see my son as prey. It's primal, and it stinks.

I'll talk to the teachers. I'll talk to the kids. I've talked to Billy already. I've given him some words to consider as reactions ('I think that's a silly question' and 'Please don't disrespect me') but really, I'm pushing shit uphill. Or perhaps it's the whole moving a mountain one teaspoon at a time thing...

Am I allowed to flick teaspoons of soil into the eyes of little children? Even 'accidentally'...?

Monday, May 10, 2010

Here's a big fear, right here...

Let me begin by saying (as I may have before) I'm irish. I'm a catastrophiser. I was already carrying around a too-active mind, and a leaning toward the dark side before the 'a' word entered my life.

That's my disclaimer. I should just put this at the top of every post.

Today, I was driving home from the school drop off. Billy, slightly bizarrely, was thrilled to be back at school. He was immediately engulfed by wrestling boys, and was very happy to be there. They're working on animals, in preparation for a big trip to the zoo at the end of the term. So, he was happy - socially and cognitively. He was happy, and so I was happy... it's all good. He's safe, the world's a good place.

Then, they played this amazing song by Kate Miller Heidke on the radio.

It's a story from her life, she says. It's called Caught in the Crowd, and it tells of her reaction to a specific bullying in her school life. The description of the kid - the bullying victim, is the thing that got to me. He sounds a lot like he was autistic. He sounds a lot like Billy could be... at high school.

I don't want to write a failed future for my son. I truly do not believe that anything he does could be construed as a fail. He has such integrity. The way he lives in the moment, makes it (at least at this point in his life) very difficult for him to do anything but be himself.

But the world is an arse of a place sometimes. The pack is a dangerous entity. There is protection in being one of the crowd, and there is bravado in that protection. It is that unreal, immature bubble, that allows young people do horrible things. Especially when there is an easy target around - one who does not share a common understanding of simple teenage things like friendship and peer pressure.

I know he's very young right now, but at this point, I cannot see us sending Billy to a mainstream high school. I have no doubt that he can handle the school part. I do not believe it is fair to force him to handle the social part. It seems like sending a soldier into battle with fake weapons.

There must be another way of learning about the ins and outs of social transactions, without having to go through it on the coalface. We might not know how, yet, but given the generalities of what we know about how ASD people learn best... it can't be a huge leap to work it out.

This, to me, is one of the things we should be investing our research time and energy into... as this generation of ASD people grow into an adult world unused to such a big autistic population.

Just another thing to turn the mind to on a rainy afternoon.

But maybe not today, because today he's happy wrestling with his friends.

Now here's something interesting...

Well, it's interesting to me!

Today we had another chat to the woman we will call 'nice doctor'. She was the one we saw last week when Billy was sick, who stood out from the crowd (and I mean crowd) of doctors we have met in Billy's lifetime.

She called (yes, she called) to give us the remaining results from the blood tests she took when he was sick.  The results are very interesting, for reasons I never would have called interesting.

First, no coeliac disease. I'm glad about this, though it still doesn't rule out going GF. We will do a GF trial.  (See how I convince myself...?). But I am Irish born, the last of six kids. There are two diagnosed coeliacs among my siblings alone. There's a bunch of auto-immune stuff in the family, and a whole lot of allergy and intolerance. I wouldn't have been surprised at all if Billy's coeliac blood tests had come back positive, but they didn't. Which totally buys a procrastinator time. Not such a good thing, I know, but I digress (again).

Then, came the other blood results. She had ordered a full Ig array, including sub classes, and the standard blood sugar, and other blood levels. The results... nothing out of the normal range. Nothing beyond what would be normal for a kid who hadn't eaten and had been vomiting for four days.

You'd think we'd be disappointed. No results? Nothing abnormal? Are you kidding me? He was frighteningly limp, unresponsive, unable to kick the bug... what's up with that?

Autism is up with that. Sensory Processing Disorder is up with that.

This set of results, taken (finally) at the peak of an infection lets us know that he's sick, for sure. But, it's his particular autistic profile that takes it out of him when he is sick. He is depleted by the fight. He is disembodied by the feelings. He is dissolved by the symptoms.

I'm sure I've linked to this article before, but I'll do it again. It's all about shutdowns in autism.

Very briefly, we didn't lean toward autism as a description for our toddler's 'issues' because we didn't have meltdowns, we had shutdowns. We didn't have tantrums, we had the Dalai Lama. We didn't have rigidity, we had the ultimate cruiser. Billy is compliant, to a 'T'. As in, 'Too' compliant.

This article was the first one that made us go, 'Oh... that's not good, even though makes old people think he's the best kid on the planet...'

Instead of acting out, Billy internalises. He's not a fighter, he's a flighter. It's way more socially acceptable, but it's just as damaging to his health. He is struggling just as much (if not more) than a kid who is screaming and biting. He is deeply, deeply overwhelmed. And we all know what that feels like... Everyday life is one thing with all its noises and movements and nuances. Sickness is quite another set of things.

So, now we know, (thanks to 'nice doctor') that our many trips to the hospital are not necessarily necessary. This discovery will save us time and money. That's good. We can ride these incidents out, hydralyte and panadol/nurofen in hand.

He is getting sick like a normal kid, it's just that he's experiencing it in a different way.

Quite the metaphor for his life, really.

Big breath out for us, and a big pile of food for Billy... check out the weight loss!

Saturday, May 8, 2010

Can't let the day go by without a bit of a mention...

It's Mother's Day morning, and I'm curled up in bed with my second child - the laptop, caffeinated, hungry and thinking about being a mother to the first child, Billy.

He's a brilliant kid, and I'm prouder of him than anything I've ever had anything to do with. I'm reluctant to say 'anything I've ever done' because I think Billy has really done it all himself. Mostly because I think children are who they are, no matter how hard we try to make them what we want them to be.

I am a lucky mother, because I got a child with a calm, contemplative temperament who looks for the laugh in most situations. I got a child with a true love of learning, and a passion for the things and people he loves. I got a child whose natural instinct is to care, and who has never, ever thought to use violence to solve a situation.

If I was making a list of the sorts of things I would look for in a friend, a colleague or in the kind of aspirations I'd have for myself... the qualities I see in Billy would be at the top of that list.

I'm torn about even mentioning the 'a' word, to be honest.

I'm his Mum, regardless of what he may be diagnosed with in his lifetime. It may change the way we behave as a family, it may change the choices we make in our lives, it will definitely change the dreams we had of being the parents of the next captain of the Wallabies.

But it doesn't change my experience as a Mum. We start each day with a cuddle, and end it the same way. In between, we laugh, cry, eat, play, talk and dream together.

I cannot imagine what my life would be without my little man.

Thank you for making me a Mum, Billy.

Friday, May 7, 2010

Why do we not prepare a bit more for stuff like this?

When I was a kid, I remember an awful lot of school time being given over to preparations for a variety of life outcomes. There were mothercraft classes (lots of montages made from pictures cut out of the Australian Women's Weekly), sex education classes (very strange films about ovulation featuring Tinkerbell) religious classes (in a state school, always stuck in my craw) and the odd chat about politics (in National Party Queensland, always funny).

But no-one, ever, talked about disability.

Perhaps where I grew up was particularly backward. I hear the sniggers from all the Australians. Let me rephrase. Where I grew up was particularly backward. But I'm thinking there were still people with disabilities there.

I don't recall any kids with disabilities at my schools... And I went to big, outer suburban schools. You'd think there would be a few different kids among the 2100 kids in my high school in the year I finished.

Don't get me wrong, there were a couple of kids who knew everything about grasshoppers or dinosaurs. There were kids who wore their pants really high, or who had odd bathing habits or who were spectacularly brilliant at something obscure. But I do not remember wheelchairs, stimmy kids, obvious chromosomal issues...

No wonder this generation of parents is so flummoxed by the acceleration in stuff like autism rates. We totally did not see it coming.

The first mention of autism I recall was in a book called The October Child. I read it when one of my siblings had to read it for school (you're starting to understand that the kids who knew everything about grasshoppers didn't seem all that odd to me). The book really caught my attention. I would have been ten or eleven, and the idea of a child in their own world was almost romantic.

Apart from that, we had a family friend with a young daughter with a birth injury related disability. I'm guessing now it was CP and mild MR, in the 70s we called it 'spastic' or 'retarded'. Nice, huh? And I remember the phrase 'Sporting Wheelies' and now that I look back on it, I'm thinking it would have been around the International Year of Disabled Persons.

As I grew older I worked with a wonderful actor with CP, and had friends with a beautiful daughter with a disability, who has grown, in my lifetime to be a spectacularly independent successful woman.

It doesn't seem like a lot of preparation, really.

I'm thinking kids need a lot more open discussion about disability and difference.

No matter why (and you know I can rabbit on for quite a while about why), there are a lot more people with disabilities around... present... apparent in everyday life. I haven't heard it yet in relation to my boy, but I seriously dread the day someone tries to call him 'retarded'. I've been around when kids have asked him why he was weird. I've watched children and adults band together to hold him at a distance, as though if they get too close they might catch autism. I see there are kids who are naturally cruel, and who (probably without realising it) separate out the herd and toy with the ones they perceive as weak.

There are some kids who just 'get it' too. Kids who read each person as an individual, and work out how to get through in their own unique way. Those kids I do not fear for. They will take what life throws at them and make lemonade. Should life send them a 'different' child in their future, they may miss a step or two but they will keep going on life's journey.

The herders and the fearers I really worry about. They may be little now, but they have a long life to live. They may not always have the protection of the crowd to reinforce their perceptions. They may be faced with challenges they never allowed themselves to contemplate. I hope they are not challenged too much, to be honest. Because difference and disability is not a choice, it's a given. It just is.

I think we should be preparing our kids a little better than I was for a life full of difference.

It's a different world to the one I grew up in. Thankfully. I hope Billy benefits from that, as much as his NT peers.

Wednesday, May 5, 2010

Maybe I'm handling this wrong

Sorry whales, I love you and want you to know I do not pour chemicals into your home. I will always keep at least 100m away, and I promise to never eat you.

Kids overboard... it's complex, but I'll sign all the petitions I can, and definitely not vote for anyone who thinks you should go back and 'join the queue'.

Today we've been back to the doctor, and after all my raving and raging against doctors, I will take the time to give this one serious kudos. Our expectations were low. When I called to make an appointment, the receptionist said our usual doctor was booked out, but they did have a 'new lady doctor' who had a certificate in 'child... looking after... medical things...' I did fleetingly think, 'I hope she has a medical degree as well...' but I didn't say it out loud. I'm glad I held off on being a smarty pants.

This doctor was lovely. Smart, open minded (love a doctor who openly says, 'I'm a bit stumped, but let's rule out the bad stuff' and who begins questions with 'You guys know him better than me...' She really studied for that certificate.

So, blood taken, vitals good, acknowledged challenges trying to get a good take on what the issue is, instructions to go straight to hospital if he takes a nosedive.

Thanks for all the messages of support. Illness bites. Illness with a kid, on the spectrum, with sensory issues bites, bites, bites.

Did I mention he still has headlice? Hair combing is as stressful as having a blood test. Plus, he can't sit up long enough to have a bath, so he stinks and has headlice. Classy.

Parents of the year, us.

On the other hand, we're known for being really nice to whales...

Tuesday, May 4, 2010

Gastro bug, gastro bug, gastro bug

I hate whales and I don't care about anyone who is wrongly imprisoned... today.

Because Billy is still sick.

From what he's saying, it's in his throat now... which could be accurate, or could be one of those odd autistic associations where someone mentioned the word throat at the moment when he was feeling like he feels right now.

Tomorrow, Shamu and the children overboard can have my attention.

Tonight, it's all about Billy.

Tiny monkey.

Monday, May 3, 2010

I will say gastro bug as many times as I can...

In the hope that it will actually be a gastro bug that Billy has right now.

He is sick again. Surging fever, rash, vomiting every 30 minutes or so, unpleasant poo (did I just mention poo again...?)

We've been to the doctor and he says 'gastro bug'. They always say gastro bug, and I'm writing this now because I am hoping that it really will be a gastro bug.

In the past we've been back to the doctors, we've been to the hospital, been sent home and gone back to the hospital again, before being admitted. He has never managed to beat a gastro bug without a drip. More often than not, it either wasn't a gastro bug (and was pneumonia, mycoplasma, strep, staph) or it was a gastro bug but it morphed into something truly horrible (transverse myelitis).

Right now, he's floppy and quiet and sweaty. He's covering his ears and eyes. And yes, those of you who have been around me (or my stark raving mad writing) for a while will know that I have indeed floated the possibility of meningitis, and all its nasty friends, to the doctor. He says it's not meningitis because Billy can move his neck. I'm choosing to be calmed by that. For now.

The saddest thing, is the determination with which Billy tries to play in between vomiting episodes. For a split second after being sick, he feels good, and grabs a train or a book, only to give up, drop his toy and curl up on the couch again. Scruffy is getting very good at dodging falling objects, and curling up just out of vomit's reach.

Actually, the good bit is that he's finally got the yucky bucket. Unless he's really caught by surprise, the vomit generally goes where it can be easily disposed of... I can't believe I've spent two days writing about poo and vomit.

Where are my standards?

They are in the toilet. Funny that.

So, here's hoping we are not in hospital tomorrow. Here's hoping his little body fights this bug by itself, and that tomorrow I will write about saving whales or human rights or something not flushable.

Saturday, May 1, 2010

Poo... when will I not care about you?

I don't want to say this, but I will.

I am sick of caring about poo. Especially poo that is not my own. And not belonging to the dog or the other tall person in the house.

I don't want to mention names, to protect the innocent, who may read this sometime around his 21st birthday and come hunting me with a blunt weapon. So I won't. I'll just lament my attachment to his poo.

There's the general 'how healthy is my child?' parental interest in poo. I can accept that. It's just that autism brings along with it a truly unnatural interest in the frequency, consistency, colour and control of poo.

There's poo vocab, I have, that I do not want to have. I don't want to know what mega-colon is, but I do, and so does the shortest human in our house (at least my understanding is intellectual, poor old short one knows it from the inside out, literally).

I'm bored with asking 'do you need to poo?' 'did you poo today?', 'what did his poo look like?', 'was it big poo/too much poo/tiny poo/yucky poo/poo like a grown up/mr whippy poo/poo in the bath/poo in the undies/the dreaded poo under the fingernails/spontaneous poo/stinky poo/blah blah blah poo...

If we track back from the poo itself, we get to general gut health. What is he metabolising, and what is he shunting straight through? What is flat out toxic? What can he handle?

And of course, that takes us to diet... gluten free, dairy free, soy free, organic, low salicylate, no preservatives, no colours, no sugar, raw food, super food, all freaking McDonalds... I feel like throwing up just thinking about it.

It's one of the oddities of this game. Hyper-focus on individual parts of your child and its life... knowing all of them need to be working in sync to have a healthy child, but not really being able to assess what's going wobbly or why.

You read stories of people who have spent years researching and working with biomed doctors, or people who have hit on seriously helpful strategies or who stick hard to diet and supplement regimes that definitely work for them. I know lots of people who have seen huge changes with diet and biomedical interventions. I see lots of physically healthier kids, with bodies and brains working better together.

It seems exhausting, and it is exhausting... at least to me, but it also seems incredibly worthwhile.

The one thing that stick in my craw (or is it my nose?) is the prospect of even more time analysing poo.

I know I have to know, but I don't want to know.

And for those of you who are as sick of poo as me... here's some info about poo. Because poo is us, whether we like it or not.

What poo should look like (a document your doctor will show you if you ask nicely)