Monday, July 25, 2011

Do you ever get this one...?

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

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

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

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

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

It goes something like this.

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

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

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

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

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

What's caused this empty frame of mind?

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

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

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

He's seven. Not seventy.

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

We know nothing.

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

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

I know nothing.

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

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

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

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

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

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

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

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

1 comment:

Wendy said...

Well said, Val!