Wednesday, November 24, 2010

Oh dear...

Today was a very, very bad day.

A little back story before I present you with the complete travesty that was today...

Last term at school, we decided to try half days for Billy. I thought we were trying this because it would work better for Billy (it did) but it seems we were trying it to see if he got sick less. He did get sick less, but it didn't mean fewer days off school. Therefore, the half days were deemed a failure. A week and a half ago, we abandoned the half days in favour of full days again.

Awesome. Not. And today, we paid the price.

More back story (Oh, I am a tease, aren't I?).

Half days were not working for Billy's teacher because it was hard for her to keep track of what he knew and what he didn't. It was difficult to get a sense of he was travelling in terms of the journey of the whole class. I get this, I understand. It must be very frustrating.

For Billy, the half days were awesome. He was alive when I picked him up. He was full of chat, excited about what he had learned in the day, keen for playdates and extension learning. He got sick twice in the term. Just happened what he got once was suspected whooping cough, which took him out of school (he is not fully immunised, neither are the majority of the kids in his school). So, he was out for fourteen days, no matter what. Those darned numbers.

For the teacher, it didn't work. I get it. I hear you.

Against all my better (gut) instincts, I agreed to try full days again.

On the weekend, he was sick again. Exhausted. Coughing, dark under the eyes, generally zoned out. We sent him back, and on Monday he pulled a bunch of stuff off a shelf in another classroom. Lego, other construction toys. Why, dunno. Guess he was overwhelmed.

Tuesday, he stayed home for the morning and went swimming with the class in the afternoon. Last night, he coughed all night.

Wednesday, today, he went to school for the full day. In the morning, they had an excursion. This included a trip in a bus - very exciting and very, very loud. They went to the CSIRO (science centre), and found out all about insects. Apparently he had a good time. Trip back to school in a bus, free play at school... sounds good?

Maybe, but it is actually very very bad.

Billy gets back to school and is banned from all his favourite safe zones by kids, being kids. Billy doesn't get context. To him, there is no difference between kids and adults/actual direction and kid chat/bullying and conversation... he hears, 'you can't play here' and he leaves. He goes to another safe zone and and gets banned because he was breaking rules.

So he leaves. No safe zone. Overwhelmed child full of the noise of 30 kids on a bus. What does he do? He returns to the scene of the lego crashing crime of two days earlier and... wreaks havoc. This time everything comes off the shelves - books, lego, cuisenaire rods, matchsticks, every kind of construction toy... everything. Every-f'ing-thing all over the floor.

I arrive at school to pick him up, and I can't find him. He's in the midst of the crap, jamming books back onto shelves under the supervision of his teacher. She tells me this is all OK, a part of the journey, totally fine.

W. T. F...??? No it's not. It's just not.

Seriously. This is not Billy. Never in his life has he done this. Never done anything like this. Well, I lie. Once, last year he pulled down a series of tubs filled with beads in the craft room at school. He says he can't hear in the craft room. That it's so loud, it's hard to make a good choice.

Are we getting a picture here?

Noisy + Billy + no appropriate intervention = a crash stuff down fest

So, what the hell do we do?

We are at the only school in Christendom where Billy will not be required to sit still for longer than it takes to complete a learning task. That's because no-one is required to sit still in order to maintain a sense of teacher mandated order. That's a big deal. I do not believe it is good for him to get the message that he is 'wrong' purely on the basis that his neurology demands behaviour that is considered inconvenient for teachers. It's involuntary. There's a certain amount he can stretch himself, and we work toward that, but... really, he's not bunging it on. And the more he forces himself to do the 'right thing' the bigger the cost at the other end.

So we're onto a good thing, right? Maybe.

I am increasingly worried that 'success' at school is declared when Billy behaves more like the other kids.  So, he gets through an excursion. Yay. I celebrate that achievement. In my head, I'm thinking, 'holy crap, there will be a cost for surviving two bus trips', but unfortunately I think the school might be thinking, 'he can totally do it, what the hell is she carrying on about?' With no understanding of the cost or, it seems, the consequences of totally doing it.

I wonder if today's classroom redecoration is even remotely related to the excursion achievement? I wonder if anyone asked anyone what happened just before Billy entered the classroom. I wonder if anyone was even watching. Actually, I don't wonder, because I know that no-one was. No-one can tell me how he ended up in an empty classroom slinging school supplies about.

And there's the crappy end of the stick. He needs an aide. He needs someone to help him. He needs someone who understands autism, and understands him and puts the two pieces of information together into a logical, reasoned picture.

And here's where I question whether we are doing the right thing at all, in regard to his education.

I do not want him to go to autism school where he is given the message that his autistic being is wrong, and needs to be re-trained.
I do not want him going to mainstream school where he is given the message that his autistic behaviour is wrong and must be re-directed.
I want him to go to a school were who he is is OK. Autism and all.

The autistic being and the autistic behaviour have to be OK. They have to be understood and anticipated and pre-read and managed and accepted and challenged and, and, and... all the things we have done as a family for the last seven years.

As I type I am clear that this is too much to ask of a school. Even hippy school. Without an aide, he is free to handle his sensory processing disorder in his own way, and he's seven years old. Seven year olds make irrational choices some times. Without support,  he is at the mercy of children who are amused by his behaviour and thrilled by what they can make him do. And we all know what that means. Without some freaking miracle, he is doomed to be 'that kid'... the odd one... the one who does weird things. The retard (and no, I don't agree with that language being used, but it is used whether we like it or not.)

I don't want to set my kid up for failure.

I don't have the answers. I just want to keep him away from all of this for as long as I can. I don't have the energy or the desire to force autism down anyone's throat. I am exhausted enough having it forced down mine.

We are the luckiest parents in the world, because we have a boy who sees only good in everyone. And we throw that luck away when we let him loose in a world not made for his sensitivities.

I have no jokes. I have no answers. I can barely see through my eyes that have cried too much.

Which made sorting out all those freaking legos and construction toys a little challenging, I'll tell you that much. Kids are going to be building spaceships with matchsticks tomorrow...

Saturday, November 13, 2010

I'm quite scared to do it...

But I think it's time to dip my toe into the vaccine waters.

That actually sounds really yucky. More that that, it frightens the hell out of me, because there's nothing like a vaccine debate to make people angry and alienated. The last thing I want to do is alienate anyone... (I promise I'll return to hilarious stories about poo and hippy school next time)... but...

A couple of disclaimers:
 - Vaccinate your kids or not, I'm not questioning you.
 - I have no problem with autism per se. If that's who you are, awesome, that's who you are. I do have an issue with avoidable autism (or avoidable health issues of any kind).
 - Clearly, I have a leaning toward the non-vaccinating camp given I have a kid with a medically diagnosed vaccine injury and autism, but I'm completely NOT of the mind that all vaccinations are wrong.
- I'm totally not trying to back anyone (or myself) into a corner. I'm just trying to think it through.

I just kinda, sorta, want to organise my thoughts on vaccinations and vaccines.
Not so I (or anyone else) feels guilty or more conflicted.
Not so I can slam doctors or big pharma.
Not so I can isolate blame or even responsibility.

I'd like to do this, because it would be brilliant to think that we were making some inroads into a future where we all feel comfortable about vaccinating our kids (or not) and while we're at it... maybe we could also think about our comfort level with the other environmental insults that seem to challenge our kids.

Cos, I'm not feeling very comfortable right now. In fact, my level of uncomfortable has risen from king-sized-bed-in-a-flash-hotel to nasty-too-tight-underwear-worn-on-a-very-hot-day over the last six years or so.

What I'd like to know is... are there people on this planet who do not have the capacity (on an immune or other biological level) to cope with vaccines (and pesticides and cleaning chemicals and dietary additives and medicines). If it makes you feel better, insert the word 'certain' in front of each of those beastie nouns.

It seems to me that a lot of the 'is there a relationship between vaccines and autism' discussion gets banjaxed because people get tied up in 'yes' or 'no' as an end (rather than a beginning) to the debate. If we take wanting to say the yes/no answer out of it, what are we left with?


OK, then... let's look at the 'spectrum of maybe' and see what we find.

On one end of the spectrum is the belief that autistic people do not (innately or in an acquired manner) methylate (process and detox) heavy metals and other toxins well within their bodies. This leads to all sorts of biological consequences, especially in relation to the gut/brain/immune connection. It impacts on motor skills, thinking skills, bodily functions... yada yada yada. Given the presence of heavy metals and other chemical agents in vaccines and the environment, and the timing and density of the current vax schedules... we may be making susceptible children more vulnerable.

Makes a lot of sense to me. I see an emerging bank of evidence (and a much bigger and more vehement tsunami of refusal of that evidence) and I still go, 'meh... makes a lot of sense.'

On the other hand, is the camp that says autism (or anything else) just is. It happens. Get over it. Children get an unlucky roll of the (probably genetic) dice, and there you have it. Autism. We have more kids being diagnosed because doctors are getting cleverer all the time. (you can tell this argument is starting to rankle with me, can't you?)

It does make some sense, but seems oddly minimalist in its approach. And this is why.

When I was a kid, I knew a couple of kids who could have been autistic. One was a walking grasshopper encyclopaedia and went on to work in one of Australia's leading animal research zoos. The other had CP and what seems (now) like autism along with it. I went to an average, lower middle class set of schools, full of big populations of average lower middle class kids. Two kids, in all that time. And I'm the sort of person who would have noticed. Trust me on that one.

Now? Ask a teacher how many ASD kids they see in their school population. Ask a friend whether they know any ASD kids. Ask me, and I accept my perspective is somewhat skewed by family and online boards and EI, but even so... I have three friends from school with ASD kids, two friends from university and two from my early professional life. That's seven kids on the spectrum. That sure beats the grasshopper expert and the kid with CP.

How does this all tie in with vaccines (and other environmental insults?)

Kids definitely get more shots now than they used to. I should google the numbers but I don't think the numbers are the whole issue.

Here's my theory. For what its worth. And I'm 100% certain I'm not coming up with anything revolutionary.

Generations of people have lived with an increasing amount of untested or undertested combinations of toxins. These toxins have been coming at us from all angles - in our food, in our water, in the medicines we take, in the vaccines we receive,  in the substances we use to clean and deodorise our bodies and houses, in the plastic we use to wrap, store and heat our food.

We've trusted in 'them'. The decision makers. The seekers of evidence, who have tested all these substances and deemed them safe. How many times (in my head) did I think, 'Man, I feel odd after using that hospital grade viscous bleach to clean my bathroom... but they wouldn't let me use it if it wasn't safe.' Seriously, I thought that. A lot. But then I will admit, I feel 'odd' a lot (on account of being decidedly odd).

Minor diversion. I'm back now.

These chemicals have been (perhaps) tested separately but not in combination, perhaps tested under one circumstance (unheated) but not in another (oh, say... heated), perhaps suitable for use in one context (as an industrial cleaner) but not another (as a shampoo ingredient)... and they've been in constant, even increasing use over many generations. They are surely accumulating in our systems.

Now add this accumulation, in a chicken or egg style fashion, to an increasing genetic susceptibility to things like autism, ADHD, allergies, auto-immune conditions, asthma, epilepsy... and you get an increased change (surely) of creating increasing actual susceptibility in subsequent generations.

So, if we continue to treat emerging generations in the same way as we have treated those that have come before... the susceptibility is going to make newborns with cracks in their health.

And it is exactly those those newborns who deserve special consideration (and they are not receiving it, at least not here in Australia where they receive 25 vaccines over four visits before 6 months of age,  in various combinations).

You can probably tell I haven't gone past high school biology. I do not have an evidence based brain, for sure. But, as Scruffy's vet told me this week, I have a very good eye for relevant detail (which was handy as the walking stomach of a dog continued to vomit from unknown causes).

I swing from wanting to stand on the top of a grassy knoll waving a flag saying 'perhaps you should drive an alternate route today', and thinking I am a complete nut job. But here's my plan (crazy as it may sound).

Why can't we have a test  (either prenatally or just post birth)? A test to see how newborns immune systems are functioning. I don't know what we need to know, though I'm sure there are plenty of people who do know. But if we knew, we could make decisions about these precious newborns that might protect them the sorts of environmental (external) insults that may link with a possible genetic (pre-existing) susceptibility and cause... something like autism.

We test. We think. We act.

Feels (to me) like it beats the status quo - We assume. We ignore. We blame.

I hate feeling powerless. I hate feeling out of control. I really hate not being considered. I know I am not the only parent who thinks their child's health is being ignored. I am not the only parent who saw a child struggle with immunisations. I am not the only parent who suspects their child is worse off, having had decisions made about their health that were out of their control.

I don't blame anyone (though I do wish I'd spoken louder in various situations), but if there's a chance to reduce the numbers of kids with autism (ADHD, allergies, etc etc) shouldn't we try? At the moment, we seem to be telling the vocal parents to be quiet (because we are not doctors and therefore do not know) and then scrambling ever dwindling resources to 'cope' with all these diagnosed kids.

If you have a child with autism (no matter how 'mild'), or you are someone who feels empathy with kids, you will know that it's impossible to think that parents in the past didn't notice that their kids were autistic. If you have a child with any kind of special needs, you will have seen that blank look in the faces of the medical profession when you ask them questions they can't answer. Something is going on...

Oh, how I wish we could stand together, respectfully, as a community and acknowledge each others strengths. Even more important, we could acknowledge that we share this autism experience - we don't own it or control it, but we need to work together to understand it.

Or not... we could just think of fluffy bunnies and Renee Zellwegger movies.

I am seriously nervous about posting this, and would hope that even if it makes you feel like spitting all your teeth out one by one, that you still keep one thing in mind.

Our kids... my son, just like most kids, was conceived and born in pure love and hope. He lit up our lives from the moment we met him . And he still does.

But, every single day, he begs, through tears, for us to make sure the dog doesn't bark, because the sound feels like someone punching him. He has a massively high IQ and yet struggles to complete a simple first grade worksheet. He can talk up a storm, but doesn't have the muscle strength to eat meat. He hasn't got a chance in hell of sitting at a desk for more than five minutes at a time, unless YouTube is on that desk and he has control of it. And we are, undoubtedly, the lucky ones.

If there was a way, even a possibility, that you could spare your child an anxiety attack over a lamb cutlet, you would, right? And surely, if there was a way you could spare future generations of kids from going through hours of uncontrollable tantrums... you would, wouldn't you?

There's a roll of the dice, and there's ever diminishing odds... I know which one I'd choose.

OK, go spit out your teeth now. Who do I think I am?

Tuesday, November 9, 2010

You know what stinks...

Billy's still not well.

But there's more (unsurprisingly). What stinks even more is that when he's not well, he's also unable. Not disabled, so much as unable.

He struggles to do all the stuff he's learned are possible (the things that don't come naturally). Things like:

  • it's a good idea to answer people when they ask you a question
  • it's even better to look at them
  • loud noise is bad, but seriously it won't kill you
  • walking on your toes isn't always the best option
  • listening to and following instructions is, unfortunately, not an elective choice
  • waving your head in the air like Stevie Wonder feels great, and yet, might make your peers freak out
  •  repeating the same thing endlessly might be soothing to your brain (and even hilarious) but people around you are starting to pull out their own eyelashes in frustration

Now, the accepting all encompassing humanist in me says, 'Who cares about any of those things?' And that is a huge part of me. So really, I don't care. He's sick. Cut him some slack.

But, add Billy's tendency to hold onto a bug for waaaaaaay longer than most kids (we're onto day 15 of this one) and you've got a kid who is at home from school a LOT.

Because there is no point in sending him. Because he cannot control it. And I do not want him hearing that he 'needs to...', 'should be able to...', 'is old enough to...' when he cannot control it. Even at hippy school, which is as understanding and loving as a school could be.

Illness makes everything harder to access.

It's like his neurological capabilities shut down from the extremities first - from the outside in. Who knows, maybe it's a primitive fight/flight/freeze thing. The brain is taking care of core business, and the regional offices close until cash flow is improved.

So (and here's the pathetic woe-is-me bit)... I hate looking like the crazy Munchhausen's by proxy mother (again). He's not hideously ill. He's not contagious (though there's a whole other post in germ risk minimisation coming from Billy, not going in to Billy... it's amazing how generous he is with his boogies). But it doesn't seem fair to chuck him into the world when he's operating on half speed.

Let's face it, it doesn't seem fair to send him out on a good day.

When sound and light and smell and movement flips his chatty brain into a place where responding to a simple 'Hi Billy' seems too hard... it just sucks.

The upside? More time with my boy... who, at the grand old age of seven, has announced that my days of calling him 'Baby' and 'My Tiny Prince' are over.

Actually, that sucks a bit too.

Did I mention the dog is in hospital, having eaten something deeply inappropriate?

I need chocolate.

Friday, November 5, 2010

Gonna party like it's your birthday...

I'm at Hopeful Parents today, on a very special day.

Billy is seven today.

And we're all covered in sprinkles, because some seven year olds have very specific ideas about their birthday cakes...

If you have the time, and the inclination, take a look around Hopeful Parents. They're an inspirational brunch... I mean bunch. I've got cake on the brain.