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!

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.

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.

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...

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.

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.

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)