Monday, December 27, 2010

I'll let you in on a little secret...

Tonight on ABC3 (kind of like PBS for tweens) here in Australia, a new game show went to air. It's called What Do You Know?

For the uninitiated, it is a fast, fun, quiz show that pits Australia's greatest teen know-it-alls against each other for nothing but the sheer joy of winning the series. No prizes (well, a couple right at the end of the series), just glory.

You may have picked up from reading this blog, that I am a bit of a know it all myself. And if you think I'm like that now, you should have seen me in my school days. I tried really hard not to be a pain in the bum, but I just didn't like letting 'dumb' go through to the keeper. So, I often stuck my hand in the air and shared my thoughts.

Cos, I don't want to shock you, but there's a hell of a lot of dumb out there. I'd like to apologise, well after the fact, to all my peers, because I really must have been tedious.

Anyhoo, flash forward to now and I get to write for a living, and throw the odd idea around. One of those ideas came from a combination of my past and my son's potential future.

If you've met Billy, then you've likely had a conversation about one of two things - Thomas the Tank Engine (and his 68 odd vehicular friends, and the plots and dialogue of each and every episode or movie ever written) or animals. And when I say animals I mean obscure mammals like the pika, the capybara and the agouti. Or any of ten or fifteen species of chameleon or iguana.

He knows stuff. He can't remember to say 'Good Morning' to his grandmother, who hangs on his every offering. But he knows stuff about stuff he loves. And once he warms up, he'll tell you all the stuff he knows. If you are lucky, he will also give you a list of all the people and animals he has known who have died.

It impresses people. I'm imagining, if he happens to turn into the Aspie-ish kid who traps unsuspecting folk in loooooong 'conversations' about the things he knows, it could become less impressive. We're working on avoiding that perfect social storm. But in the meantime, it impresses people.

I wanted, just once, for there to be a show on TV where 'kids who know stuff' were the winners, not the boring losers. And so, I strung some words together into a show proposal, and was lucky enough to witness the birth of What Do You Know?

But really, it's a bit of a secret. Though I'd like to dream such a day might come, I'm thinking that the chances of a national TV network marketing a show with the line, 'made to make Aspies look like heroes' are fairly slim. Last time I looked, people weren't making sexy slogans about difference. Shame, really.

In the meantime, if you are an Aspie, or know an Aspie, let me give you a clear message. I think you are heroes, and winners, and completely excellent human beings. You deserve a lot more credit than most people know.

And to all the people I offended with my opinionated, adolescent search for meaning... I'm sorry. Truly. If it makes you feel any better, I'm still looking. And I'm still annoying. I just get to drink more wine now.

Sunday, December 26, 2010

While I'm not talking about myself...

I have no idea how long I can keep this up.

Every day 10 things slap me in the face as potentially interesting things to blog about, but they all come back to the slap in the face from school... and so I shelve them for 'happier times'.

In the meantime, I've read two extraordinary books (frantically ticking mind? me? what gives you that idea??).

Here are my thoughts.

Kim Stagliano's All I Can Handle: I'm no Mother Teresa - A Life Raising Three Daughters with Autism
Funny, smart, enlightening, sickening, inspiring all in one book. She's the human I want to be, never mind the mother, wife, autism advocate... whether you feel like you are fighting the fight beyond your own doorstep or not, Kim speaks to the heart, from the heart, with a fair amount of laugh out loud thrown into the mix. Did I mention she's smart as a whip too? I love this book, and want lots of people to read it too. Because until accepted wisdom (from the coalface) about autism, starts dancing about in popular culture, numb-nuts like many of those who think ASD is a supermarket chain, will just not 'get it'.

Sharon Guest and Stuart Neal's book Jessie Mei Mei is beautiful and harrowing all in one.
They live in my city, they are parents like we are, and they have a child with a disability. Their courage in navigating a bureaucracy that abused and ignored their rights as parents of a gorgeous and chronically disabled daughter is as inspiring as the story they were able to write. There are no happy endings, but a stasis that allows love, integrity and dignity to at least have an airing. This book scared me and charged my soul at the same time.

I also may have read a Lauren Weisberger and a Cathy Kelly (oddly, you can get this in bookstores here, even though it's not released until July 2011 on Amazon... FWIW, it's charming, worth the $10 they're asking for it but not earth-shatteringly Irish and charming), but don't hold either of those against me.

Wednesday, December 22, 2010

I haven't forgotten...

Just before the end of the school year (mid-december here in Australia), Billy's school took a course of action that knocked our feet out from under us.

It's something has huge implications and will require a substantial amount of negotiation and change to resolve.

So, I feel the need to be careful (so very unlike me) as  the road forward is uncharted (at best).

More frivolity and talk of poo will appear on these pages in the future, but for now... I'll say...

Have the happiest of holidays, and take care of yourselves and your families.

Love to you all.

Saturday, December 11, 2010

A little perspective here...

This week, I was picking up Thomas trains, as is my wont, and something extraordinary happened.

An accident, a lot like what happens on countless Thomas episodes, is what happened. Unlike the Thomas stories though, someone actually got hurt. Me. As one leg flew forward and one stayed where it was, and I fell to the ground shouting 'Oh golly, this is interesting', or some such words... I got hurt.

My knee (the one that stayed still) took the next few hours to turn into a very ugly flesh football. The next morning, the doctor and the physio proclaimed a ligament injury, gave me crutches and sent me on my way.

I was secretly thrilled. Crutches! I've never had crutches before. How exciting, I thought.

Clearly, my brain was clouded with endorphins or hormones or whatever the things that make you think it's OK to go grocery shopping when you are hungry. Let me make something clear. Crutches are not cool. Nor are they fun. They hurt your armpits and the heels of your hands. They smell like the person who used them before you. Oh, and they help you get around, but very very slowly and a little like a cow on stilts.

I have spent a lot of time this week trying to work out how to park the car as close as possible to wherever I was going. I have taken to leaving an hour to go on a ten minute journey. I have been sweating like cheese at a picnic.

There's a serious point here. Actually two.

One, is the fact that I seriously need to think more carefully about what Billy, and many many other folk go through on a daily basis. The strategic planning. The avoidance of obstacles. The constant assault on your senses. The extreme interest and indifference (from totally separate people) to your challenges. The lack of dignity that hits you out of the blue.

As I crossed a pedestrian crossing on my way to pick up Billy from school this week, a car got bored waiting for me to get across. So it just sped in front of me. Thankfully, my eyes and ears were still working. And also my fishwife voice that hopefully managed to reach them as they drove away.

I'm more proud of Billy this week than ever before, because I realise I have the luxury to take stuff for granted. I don't have to think through each painful step of my day. And let me guarantee you, me exhausted from planning is not an attractive or rational sight.

My second point. I'm not so proud of this one.

My leg is getting better all the time. I'm hobbling happily now without the crutches. I'm slow and ungainly (a word once used to describe my presence in a phys.ed class). But I'm OK.

But this week, Oprah is in town. Waaaaaaaaaaaah!

And I am one of the 12 000 Australians who scored tickets in a ballot. Me, slow, sweaty and freaked out by the presence of the other 11 998 people in the queue (my friend Linda is lovely and I can handle close proximity)... but you are getting the picture. It's not going to be pretty. I kind of need the crutches to maim my lymph nodes... oh sorry, I meant to get around easily. And I can't help thinking that the crutches might circumvent a bit of time breathing other people's sweat while I make my way to see Opraaaaaaaaaaah. Well, I'll still smell the dude who had the crutches before me, but that's a smaller price to pay. I'm not proud of myself, weighing up my compromised mobility over currying favour with Oprah's door bitches.

It's a murky path I'm walking. Hobbling. Murky and stinky. But Oprah's at the end of it, and as much as I vow I will not scream like her other audience members, I may cry. My armpits are bruised... what does Oprah expect?

If this is the first blog of mine you have read, please do me a favour and click through and read another entry. I promise I can be a lot nicer than this entry implies.

I guess, this week I learned that having different abilities than the rest of the folk, can make a girl feel a little cranky... and ride the horns of an ability dilemma.

That sounds like it hurts as much as my armpits.

Sunday, December 5, 2010

I wonder if The Beatles will sue me..?

I'm over at Hopeful Parents today, basking in... Yesterday.

Pop in your earplugs and join me.

While you are there, have a look around. It will change the way you are thinking about your life today.

In a good way... Promise.

Friday, December 3, 2010

What a mess...

For the first time in a long time, I've got nothing.

This week a decision was made about Billy's schooling. I didn't handle it well. And it's a mess, now.

In short, they insist he attends full time, he gets sick and overwhelmed attending full time, they can offer no option but full time.

With that insistence alone, an avalanche began.

It's school. It's him away from home, independent. It's friends. It's birthday parties. It's learning to do stuff like other kids do. It's courage and challenge and difference. It's understanding, and community and support. All falling down around me as someone insists that his needs are not possible.

I may have missed some vital class in parenting 101, but it doesn't take much to make me cry. I'd like to think most parents can be pushed to tears over their childs' needs. But I am, unfortunately, a little closer to the edge than most. It might be the hours of therapy, the diagnostic process, the ongoing health challenges, the serious health crises in the past, the fears, the google degree and all the horrors that deposits in the mind... or it might be just me (more likely)... who knows...? Suffice to say, there are tears fairly close at all times.

Two years ago, the tears seriously slowed to a trickle. Why? Because we found a beautiful school where Billy was welcomed. Not just as a student, but as a human. Where what he did was taken on board, accepted and understood. Where his cognitive skills were not neutralised by his neurological challenges. Where he could eat when he wanted to, use the toilet when he needed, play where he needed to... where the community took each member as a gift - full of lessons that went well beyond letters and numbers.

The tears emerged every so often for sure. Sometimes it was health related (tonsils, mycoplasma, numerous dehydrations) and sometimes it was school related (needing to add more autism understanding, realising he was lagging in curriculum areas) but they were transitional tears, and each bout seemed to make us stronger. It helped, immensely, that we had a beautiful multi-coloured safe place to fall.

It is always hard to play the parent game, and it's a little more challenging when your child's well-being has to dictate your activity. If Billy is sick, we can't hit the world until he is better. I've written many times before about  watching him try to function on half power. So we shut down, re-group and re-enter when we can. Then we make up lost time, in work and school terms. This made me a fairly unreliable parent in the school. I tried as hard as I could, but I definitely failed sometimes.

Hippy school gave Billy a voice. Literally. He learned it was OK to communicate with kids. Previous to hippy school he ran away from every child he met. It gave him skills to share that voice, through writing and singing and dancing and making. It gave him co-operative play and jokes and the sheer unadulterated joy of kid laughter. It showed him how to process his thoughts and express them. It showed him that the world was not an overwhelmingly scary place. In fact, it was the opposite.

I can not thank the whole school enough for that. I could not have done that alone.

Hippy school gave me a voice too. Because while my son was safe, I could work easily for the first time in his life.

It feels like a lot to lose.

It is a lot to lose.

So, unfortunately, the tears are back. Oh boy, are those tears back. And people don't like tears.

I am scared now, and though I know we will find a path forward and we will make the most of it... right now, it's a mess.

I don't know how to go backwards. I don't know how we can replace or replicate a school setting like the one we've had. I don't want to lose any of it... But I also don't want my child's physical and mental health compromised any more than it has to be.

And I don't want people upset, especially kids, but this is hard. This is the hardest thing we have faced yet. I know that this is our business and it's no-one else's job but ours to make it work, but one decision has collapsed our already precarious mountain. And it's a huge, huge lesson.

Even in an accepting, understanding world, there are some things that can't be accepted.

Thinking cap on.

Wednesday, December 1, 2010

Is it autism...?

Not a post about diagnosis denial (a whole other ball game for a whole other holiday weekend), but a question about behaviour.

Today, I met with Billy's teacher to talk through where we are at, and where we want to be in the future. The good news is, we are in agreement that there are accommodations we can make to ensure that Billy is healthy, we are pointing in the right direction for wealthy and all of us feel a little tiny bit wise.

We're going to play around with contact hours again. We're going to set up some new home/school communication strategies and do some much needed in-service. All good.

What's interesting (to a nutcase like me, at least) is the question of behaviour. More specifically, the behaviour of an autistic child in a mainstream setting. Even more specifically, can one ascribe similar motivations and precedents to the behaviour of a child on the spectrum as you can to a neurotypical child's behaviour?

Just a small question to ponder when you know you should be doing more productive things like working or laundry or Christmas shopping or finding the Wiki-Leaks guy.

The great classroom re-decoration of my last post was, in my mind, 100% a result of sensory overload.

In the eyes of hippy school staff, classrooms have been being re-decorated since the first hippy kicked off their shoes and picked up the school guitar. It happens. And it's all a journey, and the important thing is to embrace the teachable moment and move forward.

I love those eyes. I really do, and I agree with them too. But... in autism terms, I can't help thinking we're missing something.

Without trying to (because I know I am gong to anyway) sound like an in-denial parent,  Billy is not the sort of kid who breaks stuff. He has seriously never broken a toy. Seriously. He has broken a few things that have been bought for him that are not technically toys (like Hornby Thomas trains), but seriously the most careful trainspotter could break one of those by looking too closely at it. Billy is not a breaker. He would rather not use something than risk its well being (not necessarily a laudable personality trait in itself, but hey, it saves on clean up costs).

So, the trashing of another class's entire library and toy collection... it's unusual.

Today, I learned he has also taken to throwing rubbish bins down a set of steps, crashing people's lego collections and attempting to empty heavy containers of powder dye onto the floor.

And I know you autism folk are following me down this logical sensory path... he is seeking heavy work, proprioceptive feedback, controlled auditory input... right?

Or... he's being a troubled little shit, hell bent on destroying other people's stuff, getting attention, taking his frustrations out on people who have smote his name (is that even a word?)...

Is it just me?

I just can't see my kid being worried about being smoted... smoot... smod...? He been angry maybe twice in his life. He is not a fan of the dark side. He seriously is the Dalai Lama. I'm not saying he can't be naughty. I'm not saying he's perfect (though seriously, have you seen his little face...?)

I am saying forces that are barely controllable by him (yet) are behind his need to chuck stuff at school. In my opinion at least.

My theory? Give the boy a break. Reduce sensory input where possible. Increase sensory activities to encourage better regulation and appropriate registration. And he will chuck less and focus more.

Or... not. And, if not, I pack up my Birkenstocks and head for the hills.

Because, and this is the serious bit that I said to his teacher today, Billy has enough to handle.

We are reconciled to the autism, and will do everything we can to allow him to advocate for himself, now and as he grows. He has a whole lifetime to live. The autism is as much a part of him as his height, his gender, his eye colour, his endearing sense of love and justice. We can acknowledge, accept, accommodate and a bunch of other 'a' words. He's always going to be different (and not less). It's reality. We've got the t-shirts. We're into it.

But, we do not want to have him known as the destructive kid too. Because it is our firm belief he is not that. Or at least, that is not an intrinsic part of him. Yet.

However, if we handle the next few years badly, it could become a part of him - a way for him to be seen and heard, a way to communicate...  and that just seems like a dumb mistake.

I have made some pretty dumb mistakes in the past (mostly involving doing shots after a night of drinking something tequila doesn't like much or buying a car purely because it had intermittent windscreen wipers... in the 80s... it was cool...) but I'm thinking buying Billy a Bam-Bam costume for a school uniform will not be one of them.

Though... it would be cute... have you seen his little face...?

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.

Sunday, October 31, 2010

The other day I met a man in the park…

And I promise this is not some dodgy George Michael style story. I am not in jail, haven't crashed the Subaru into a camera shop, promise.

I was doing the evening ritual with Billy and Scruffy (dog park, scooter, playground...) and when we got to the playground part of the adventure, there was a man and his two little boys on the equipment. I (very briefly) thought, 'Odd to see a man by himself with his kids. Good on him.' And went about the exciting process of trying to convince the dog that 10 metres away from the playground wasn't actually that far away.

Billy and the two boys started playing an autistic version of chase (they try and engage him, and he 'pretends' to run away), and the man and I got chatting.

He was a pilot. He flew in the Australian Air Force in the first Gulf War, and then became a commercial pilot. He's flown for all of his adult life. When he talked about flying, his eyes brightened and he got a bit taller. He clearly loved to fly. He shared a lot of flying stories, making me feel much more comfortable about long haul flights in the process. I heard about the training they do, the ease of navigation, the way they prepare for potential issues, the intense risk management... all good. 

Until he mentioned the fact that, not too long ago, in a routine check up, they found he has a heart condition. And that means he's grounded.  He can't fly, until the heart condition is resolved. His wings were taken away. And when they were, his heart was broken.

I should mention here, that I have one of 'those faces'. People talk to me. It may be because I talk to them, but seriously, I am constantly amazed at the stuff perfect strangers disclose to me. I have no idea why, but I take it as a compliment. The Silent Partner takes it as a curse. He hates it when I get chatting to strangers. He's not a stranger chatter. Unless he's drunk, then he's everyone's friend. But that's a whole other story.

Back to the playground. I'm listening to this man's story. And more than that, I'm seeing the effect of his story on his being. He's getting shorter by the second. He's slumping into himself. He can barely make eye contact (no, Valerie, not everyone with eye contact issues is an Aspie, OK??). 

His reaction got me thinking. 

The pilot without his wings, is similar to the way I was when we first heard the 'a' word. I felt like my life force had been sucked out. Autism sucked it out. The light of my life... this gorgeous, clever little boy was busted. I wasn't going to get to be the parent of the captain of the block building team. My kid wasn't going to be the dux of the school. No more 'mother of the prime minister' fantasies.  

For the first few doctor appointments (or 'the parade of paediatricians' as I like to call it) I refused to accept anything they were saying. They were all idiots, and no way were they going to take away any of the brilliance and excellentness of my little man. I regret that stance a bit because some of them were talking about kind of useful stuff like GF/CF and b12 shots, and it took me like four years to come back to it. 

But hey... I was devastated. I plead temporary insanity. I was getting shorter and losing the light behind my eyes. I didn't know what was going to happen in the future. I felt rudderless, having potentially lost the one thing I knew I was born to do.

Like park man. Mr 'Point-it-to-London-and-decide-what's-for-dinner' doesn't have a clue what comes next. He's lost, because the thing that makes his heart sing is potentially lost.

And so, a couple of days ago, as the afternoon turned into mosquito hour, I found myself reassuring the pilot that everything would be OK. How did I know that? I knew it because we thought our lives were over too. We thought this disorder was going to steal away our little boy, and our dreams of the future with him. We thought we were no good. That we had failed. That the destiny we had dreamed of was a mirage.

And we were wrong. 

We still have him, and he's awesome. He's living every moment like every other kid.  He's laughing and crying and trying his hardest. He's winning, all the time. He might not play rugby for Australia, but he'll find his place. It will be something he loves and is good at, because it is not in the nature of the beast for him to flog a dead horse just for the sake of it. 

I told Mr QANTAS that we, in the process of having our hearts ripped open, have become a slightly improved, definitely more honest (and more intense) version of who we thought we were. We have accepted the road less travelled, and we are really, truly, enjoying the journey.

I'm confident that my airbus flying friend can do the same.

And if I ever make enough cash to get myself on one of his flights, I hope he actually chooses the road more travelled (or the flight path more travelled), because I'm not really a very confident flyer.

Friday, October 29, 2010

Anyone else deal with this...

Billy's not well. He has a fever and a sore throat. His energy is low,  he's teary. It's day one of symptomatic something.

I'm thinking most people with kids deal with this bit. Unless you are super lucky and if you are... I'm sorry, but I hate you just a little bit.

The thing that I wonder about is the way autism (or is it the SPD, or both) makes illness present. Honestly, looking at him today, without even beginning to take Billy's emotional life into consideration, you would think he was seriously ill. And he may well be, which I'll get to in a second (catastrophiser that I am).

I've alluded to this before. Billy is deeply effected and affected by life. Light, sound, smell, movement and illness knock him around in bizarre ways. He is depleted by intense sun light. He is repulsed by everyday smells. He is assaulted by sudden sound. He is exhausted by atmospheric sound. He is grounded by simple illness. Poor little fella... if it's not hard enough to decode people's language and read their damn faces, he also has to get beaten about by their orientation to the sun. It just doesn't seem fair.

Today, without ibuprofen, he whimpered and shivered and rolled his eyes back. And I get that many people out there would be thinking, 'Holy crap... that kid is really sick.' And I do get very frightened that he is, really sick sometimes. And many, many times we have gone to the ER. Worse, we've gone to our local doctor and the doctor has looked at Billy and ordered an ambulance. And... at the ER, they say... 'Hmm... (very loudly)... we'll put a drip in and see how he goes.' We stay a night, and then we go home.

Except for the two times they sent us home, and then we were back the next morning, worse than ever. One of those ended in Mycoplasma (nasty scary rash, hateful antibiotics). The other in Transverse Myelitis and more seriousness than I EVER want to deal with again.

And (surprise, surprise) those events scared the hell out of us. Which makes the 'is it a cold, or is it some freaky Australian mutation of West Nile Fever' even more of a challenge. For me at least. Did I mention the catastrophising thing?

Tonight I'm taking solace in the magical ibuprofen transformation. As long as it's making his perk up (as opposed to puke up) I will keep my desire to convince an off duty ER doctor to crash on my couch at bay.

And remember that as much as my heart is ripped out for Billy, I know so many other autistic kids whose ability to weather life's intensities is compromised in much more profound ways. I'm not one of those people who wants to 'cure' my kid (not that there's anything wrong with that) but, on days like today, autism's more charming qualities evade me, and I want it to go away for a while.

Saturday, October 23, 2010

Sometimes I wonder...

I wonder about myself a a parent, as though 'parent' is some kind of independently moderated constant concept.

I wonder if I would have been a different parent, if autism hadn't been thrown into the mix. I wonder if autism makes me a different parent (not better or worse, but different). And I wonder if the way I started parenting, before I knew much about autism, was the way I would have gone on...

Tomorrow, we're off to a birthday party. Our lovely, compassionate, welcoming school community have included Billy in a classmate's celebration. I feel very lucky to have found this village, and know that they are playing a huge role in Billy's development (in the unmeasurable human ways).

But I've already hit the red wine bottle trying to calm the old nerves in preparation for the event.

Will he cope? Will he understand? Will the subtleties of the house party experience evade him altogether?

While I've been thinking, it's sent me back to my own childhood. I've been struggling to remember kids parties in my own life. Perhaps I was one of those kids no-one wanted at a party.

There's no doubt I was not the rudder by which my peers navigated their way through social waters. I dreaded parties, never sure when to eat, what to do and where the toilet was (let's not even start with the issues around using toilets in places that were not my home...)

I know, as a child,  I sought the company of adults, and impressed them with my knowledge of obscure non-child-like subjects (are you sensing a pattern here...?) Perhaps my memory of kids parties is actually my memory of the space away from the children, who always seemed to be engaged in deeply pointless and unfathomably random activities.

Oh God, my kid didn't have a chance, did he?

So, here's my question. And it's not that much different to the ones I was asking in my head when I was a child.

Is everyone else worried about the things that I am worried about?

Do the parents of the perfectly NT kiddies sit at home, knocking back the red wine, (avoiding the work they should be doing... that's a whole new conversation), and thinking 'how are we going to make it through that birthday party?'

Do they wonder if their child will break something without ever knowing it shouldn't even have been touched? Do they fear their child might choose to take a leak in the potted palm? Do they dread that their child will stick out when it doesn't occur to them to greet anyone, or leave the birthday presents for the birthday boy to open?

I think I was lucky (or not) to have been gifted with a temperament that said, 'Just don't do anything spontaneous, in case it's wrong.' This meant my childhood was spent in detective like observation of everyone and everything. When I wasn't discussing foreign languages with the parents of my friends, of course.

Billy has a stunning temperament of his own. Sweet, calm, connected to his experience.  He is like a barge anchored on a choppy bay - unassailably himself, regardless of what life throws at him. He has a rawness about him that makes his days rich and deep, even in their mundanity. Even as a baby, I would swing from thinking he was sick, to knowing he was thriving, just by observing his reaction to the minutiae of his day.

And that is why I may need a little more alcohol before we go to this birthday party.

I hope the other parents have a parallel experience to this. It's tempting to think they're just thinking, 'Oh sweet, two hours off, what will I do?' But, I hope I'm not completely right... not because of their decisions, but because of mine.

Because (and here's the tail of the circle finally coming to grab onto the head), I suspect I would still be the mother who wanted to be at the party with my son, even if he wasn't on the spectrum. I think I may have always been the mother who wanted to walk alongside my kid as he broke out into his own world.

And I guess I've got autism to thank for making that kind of hovering, codependence possible.

Now, if only I could use autism to justify the red wine, the overwhelming desire to eat potato chips 24/7, the ever-present thought that if only cigarettes didn't kill you, I could smoke again...

Tuesday, October 19, 2010

If you have a spare moment...

Or thirty.

Download this podcast and listen to an extraordinary take on parenting a child with a disability.

His name is Ian Brown, and his son is called Walker.

I may be especially fragile right now, but I cried and laughed and was, as my friend Jane once said, pulled up in my socks.


Thursday, October 14, 2010

It's all a little crazy...

Life has forced autism into the background, as both work and family conspire to eat up our very short days.

And interestingly, Billy has risen to the occasion in a very interesting way.

We are out of town. We are at the beach. We have limited internet access.

Billy loves the variety of locations, n a very un-autistic way. He does rue leaving a place...'I wish we were back at Nanna's house...', 'I wish we were at the lighthouse again...'. But beyond that, he's eating up the new experiences.

We struggle with family members who don't see him very often saying helpful things like, 'Of course a little boy should have some ice cream' (because we are evil nasty parents who have concocted the mega colon that has sent him to hospital in the past... who needs to learn about stuff and make change... give the kid some ice cream for crying out loud). They also like to offer constructive advice like 'If he doesn't like coughing he'd just better get used to it quick smart. People have to cough.' (Of course, an adult's need to cough is more important. Why expect the disabled kiddy to have an opinion?)

But, you know... all in all... he's doing OK. I have learned to resist the urge to punch people (they are advancing in age, it's hardly a fair fight) and they have learned to ignore my pinched mouth.

The beach is a whole other issue. Twelve months ago, we couldn't pay Billy to hit the beach before sunset. Even then, he took some convincing. Now his first words are, 'Can I go boogie boarding now?' Often, it's in the murky light of pre-dawn, and in those instances, I am indeed a nasty parent who refuses his requests. And it's hard because he's often wearing his board shorts endearingly backwards (having dressed himself) and has had a stab at applying sunscreen as well.

He runs, he dances, he body surfs (in a manner of speaking). He climbs rocks, and sails around on his boogie board/skim board/beach limo hauled by an ever more buff Silent Partner (have you ever tried to pull one of those things along the sand? It's not easy).

Something wonderfully light and relaxed has taken Billy over. And whatever it is, I hope it doesn't disappear any time soon. I may have to gaffer tape him all over to seal in the beach bum after we get back to the 'big smoke'.

And finally, the internet access. Interesting... Billy loves YouTube. Almost as much as he loves feet. Once, those two worlds collided (have I mentioned this before...? I'll remind you, either way - do not let your child Google 'Lady Feet Bed' without safe search turned on.)

But on the road, he has accepted that sometimes there's internet, sometimes there's not. When I say accepted, I use the term loosely. It's not a wrinkle-free acceptance, but it's there. It may make life cheaper. Gotta love that value.

And speaking of limited internet access... best I sign off before I-

Tuesday, October 5, 2010

An odd looking circle...

It's my day on Hopeful Parents today.

If you'd like to read about poo (again), older ladies (unrelated to poo) and coming home... click here.

Spend a bit of time looking around. It's a wonderful place.

Friday, October 1, 2010

It's been a big week...

This week has been pretty intense in my working life, and it's had its knock on effects in the autistic parts of our lives too.

And they haven't all been bad.

As I walk uneasily through an entirely new professional door, I've had to step aside from the tight, controlling mama world I share with Billy. It's been liberating and completely suckful all at once.

Thankfully, the Silent Partner has been willing and able to step into the breech, and together he and Billy have shared a lot of valuable boy time. On the surface, this has meant a lot of excellent train track building, wonderful time spent on the trampoline and a few video game playing breakthroughs. But underneath, the knock on effects are much more meaningful.

As much as a part of me hates it, my boy is stretching the strings that bind us. He's more resilient, more independent, more adventurous. He's been happy to let me set off for work in the early morning (why, oh, why do we have to start work waaaaay across town at 8am? It is not natural, functional or un-puffy for me or my face). He's accepted perfectly logical discussions about why it wouldn't be appropriate for him to join me at work in a noisy, busy TV studio. Instead, he's been building lists of experiences to share with me verbally, rather than bodily. He, and his wonderful Dad, have been hanging out. Doing stuff.

That stuff hasn't necessarily had the 'therapy outcomes' that almost everything he and I do has. It hasn't been considered in the context of what has come before and what may come in the future. It isn't even close to being a part of the 'big picture'. It's just life. Stuff. Holidays.

He's a bit sunburned. He's tired. He's not necessarily as 'monitored' in a health or therapeutic sense. But he's happy.

And I am... a little discombobulated. I'm not getting the hugs. I'm not the first port of call. I'm not the font of all wisdom and warmth. Daddy is. Theoretically, I'm thrilled about this. Realistically, I feel like there's a wall between me and my wingman. And I'm not sure I like it. In fact, I'd quite like to deface it with spray-painted illegible not-suitable-for-children words.

There's nothing new about these feelings, I guess. This is the journey of any working parent. Though it's highlighted slightly by the autism prism, that makes the boy seek the most reliable solace. He loves with a need that many of us shy away from - knowing that the ones he loves interpret the world for him.

So, for maybe the first time, I'm not his Nicole Kidman in that shitty UN movieThe Interpreter (Widescreen Edition) with George Clooney. I've taken a supporting role while someone else (someone truly able and wonderful) walks with Billy on the front line.

I'm looking forward to our holiday. I'll still be stapled to my computer, but I'll be staring at the ocean or my own Mum at the same time. Mostly, I want the permission to hug and be hugged.

I know that as a person, I want a future where I am capable of earning a living and making a difference. But as a Mummy, I want my koala boy, sleeping warm and dribbly against my shoulder, as well. And I'm guessing my employers wouldn't take kindly to almost seven year old dribble on their studio floors.

Change is good. But, man it's hard.

Did I mention it's been a big week?

Tuesday, September 28, 2010

One quirky step at a time...

This post is going to be full of obtuse references, but I'm hoping it will make sense.

When I'm not banging on about autism and all its interesting tentacles, I work in television. Most of the time it's kid's television. And as much as work drives me crazy (mostly because there are simply not enough hours in the day, and then I choose to spend too many of them reading stupid things I really should ignore on the internet), I really love what I do.

There have been some incredible moments.

I've loved the opportunity to share interesting information on TV, especially because when I was a kid, if it was on TV it was 100% true. I was convinced I would be a crime fighting, cruise taking, semi-robot woman when I grew up. I've loved meeting incredible kids and being able to get their stories on screen.  I've loved meeting innovators, visionaries and complete crazy people... even when the latter were breaking my back... even when I was swearing under my breath that I would never do this again.

I haven't always been as proud as I could be of the work that I've done. I could have tried harder. I could have got over myself and got on with it. I coulda, woulda, shoulda.

But (possibly prematurely) I am proud of myself right now.

It's not all done and dusted, but tomorrow we take a big step closer to putting something on air that brings the two edges of my world together into an uncharacteristically neat package. We go into the studio, to start recording a television program that, at it's heart, pays tribute to quirky, individual, perhaps even perseverative thinkers.

I don't want to name the show, because I'm not stupid enough to think that people want to market a show  with the message that it's all about odd kids. I hope we live in a world one day where the 'a' word isn't a negative marketing tool. But right now, I can't imagine the tweens of Australia rushing to be considered 'just like the weird dude'.

That said, I know (and now you know) that there's something swimming about in popular culture that says:
 - its great to be extremely passionate about something your peers think is odd
 - it's cool to know more than other people about some odd subject
 - you may not be the top of the class but your knowledge is valued
 - if you like knowing stuff that others don't necessarily like, you are a winner

 I hope that (just as I believed that perhaps I would be able to wear a funky gold belt and fly) adults of the future remember the show where the kid that knew (and cared) a ridiculous amount about grasshoppers. And maybe, just maybe, they might have become adults who value the grasshopper expert for more than being a figure of fun. Maybe they'll get over the cringe factor... cos autism can be embarrassing.

I know for sure that I have. And I know my life is much, much richer for it.

Friday, September 24, 2010

An interesting dynamic...

Today at school, there was a working bee - to complete the landscaping around our new building.

For the non-Australian among us, part of Australia's attempt to avoid the worst of the credit crunch was a national school building program. Every school in Australia (practically) has a new building of some kind taking shape in its grounds. And hippy school is no exception... though being hippy school, our building is a stunning, curvy, environmentally sensitive piece of genius.

Today, the school was swarming with parents and siblings and extended family, who lugged rocks around packs of frantically playing kids (we've missed our playground) to realise a long held, and well planned dream. As we left school this afternoon, the BBQ was warming up and the beers were cooling in preparation for a well earned 'school dinner'. Billy had tolerated a Friday full of many baby cries (heretofore known as a day of unmitigated torture) so we left.

Apart from a quick reflection on the immense dedication of volunteering parents, there was a very interesting dynamic today, that's worth deconstructing a bit, I think.

The presence of the parents brought out a whole new range of emotions in a lot of the kids. Some of it was happy, proud, 'look-at-me' kind of stuff. And some of it was not. Some kids, previously stoic and resilient, had meltdowns that required standing still and wailing for Mum or Dad. The ability of individual parents to recognise their own child's cry over the cacophony of an even crazier Free Friday than normal, was pretty impressive. And the unconditional support that only Mum or Dad can provide was also something to behold.

And it got me thinking (again? I hear you ask...)

Disability or no, the job of the parent is a fearsome beast. Apart from all the multi-skilling (pet trainer, food chemist, magician, dust hider, dodgy cake decorator, plotter of evil deeds on those who cross your child...) there's the unforgiving timetable, the unattractive tedium and repetition and the deeply deeply insubstantial pay packet. Seriously, if it wasn't for the hugs and the paintings for the fridge... you wouldn't apply for the job at all.

And yet, from the ranks of our downtrodden comrades come some of the most inspiring innovators I've ever come across.

I remember watching Oprah (just the once, when I had the flu) and seeing a program about women who made millions from ideas they'd had after they'd borne children. One of them was the inventor of Baby Einstein, Julie Clark who turned something that made her baby's face light up into a rest-of-your-life business. Another one was delightfully odd looking and had somehow made millions out of wheat bags and pajamas (despite the fact that these things were, as far as I know, invented by other folk). They impressed me, these women, with their passion and their ability to market something they just knew was important.

Though they didn't feature on Oprah (yet, but she's coming to Australia, there's still a chance), there are two parents here in Sydney who I have a huge amount of admiration for as well. Seana Smith and Benison O'Reilly are parents. Like many, they have kids on the autism spectrum (and NT kids as well). But not like many others, they wrote an incredible book - The Australian Autism Handbook.

This isn't a parent memoir, though there's nothing wrong with a good holy-crap-my-kid's-autistic book (like this one: The Other Country: a Father's Journey with Autism). This is an information book, a guidebook, the closest thing any Australian parent dealing with an ASD diagnosis could come to an instruction manual. It lists treatments and therapies and interventions. It suggests paths of thinking. It reflects on evidence (Benison is a pharmacist) and makes links between concepts (Seana is a journalist). Both women are astonishing writers.

And I feel no hesitation in suggesting that they are both also astonishing parents.

Their work continues in a blog, in separate titles from both women (one a novel, one a guide to entertaining kids) and in an upcoming book dealing with a completely different challenge for parents.

When I feel like sitting on the ground tracing swear words in the dirt, I think of these other parents. When I feel like asking, why did the karmic powers that be choose me for the 'special' parenting gig, I remember the crazy lady with the wheat packs. When I wonder how I am going to handle the next three weeks/months/decades, I recall the actions of the sweaty landscapers (and hope they are enjoying the sausages and beer).

It's not just dealing with adversity, that's almost a no brainer. It's the sheer terrifying newness, and unusualness of forgetting about yourself for long stretches of time. It's the all encompassing dependence. And I've only got one... I take my hat off to anyone out there with a bunch of kids... hooley dooley, that's a whole new kettle of sea creatures.

It's like anything, I guess. You live and learn. And if you can, you take the time to let others in on the stuff you've picked up that you think might be important. There's something about parenting that brings out the best in people. I know there are plenty of brilliant non-parents too, but today I'm seriously impressed with those with kids. It can tear strips off your heart, but if you survive, there's some great stuff on the other side.

If it wasn't for the parents I've met along the way, I know I'd be a quivering, alcoholic ball of bitterness. And on that note, I believe a Friday evening drink is in order.

Cheers to all the parents out there. Thank you for your generosity, your courage and your talent.

And for doing all that nasty landscaping... those rocks looked heavy.

Wednesday, September 22, 2010

It's time again...

We're just coming to the end of 3rd term in our school year here, and given the dramatic way 2nd term ended, I thought it was worth coming back to report on our progress.

I say 'our' progress because it really has been a progression for all of us - Billy, his teacher and me. Or is it, I...? (must ask the teacher...)

There have been times in this journey through autism land, where it seemed like there was so much to do, and so little time to do it. Our heads were constantly stuffed with goals and appointments and timelines and plans. We had thoughts about certain things disappearing by certain ages, and certain milestones marking points of no turning back...

But this year, things have changed a bit. We've started the process of accepting that things just are what they are, and we'll bend and shape our expectations around and through the ever changing reality of Billy. On one hand, it's a subtle kick in the guts - a clear message that its not going away. But on the other hand (my favourite hand) it's liberatingly positive.

We're not fighting anymore. We're living. We're advocating. We're learning and we're educating. We're just being.

It hasn't been a simple journey, and it certainly hasn't been smooth. It's actually been deeply and unpleasantly bumpy. We've driven over unsuitable therapies with a sickening thud. We've ground the bottom of our vehicle over inappropriate activities. We've swerved away from ignorant people and judgemental situations. We've gestured inappropriately as we sped past unpleasant experiences.

But today, as I chatted (in our regular weekly before school meeting) with Billy's teacher, there were positives to share. We could both say, without glossing over the details, that the decisions we had made about Billy's school life had paid off.

Among our good decisions, were an increase in visuals, an increase in expectations on Billy in terms of his participation in whole class activities and the introduction of teaching aids like a writing claw (Oh, how I love the writing claw) and a timer (to stretch out attention to non-preferred activities).

The winner of all winners, though, was the decision to shorten Billy's school days.

Seriously, I'm not sure it would work for everyone, but for us, a four hour school day instead of a six hour one has changed everything.

Instead of collecting a weepy shell of a kid at the end of the day, I share the car with a chatty, bubbly joke cracker. He shares work with us. His productivity has increased. His attention span has increased. He's understanding peer rules and relationships better. He completes work at school and continues his own reflection at home. His general abilities, led by his willingness to exercise those abilities, have blossomed.

And all because he gets adequate time to regenerate. And I promise I'm not exaggerating. He's more centered, more relaxed and healthier. This term, we've had two respiratory bugs, not ten. And this has been the winter term here.

It's kind of odd that the very thing that overwhelmed us in the past, has liberated us now. To paraphrase the Rolling Stones, 'Ti-i-i-ime, is on our side. Yes, it is.'

Putting the needs of the kid ahead of the convenience of the system has worked. A full school day is counterproductive for him, so we shortened it. Simple, really.  It's a hassle for the teacher, for sure. It brings up questions for the other kids, absolutely. But, those things are handleable. And, it works for Billy.

This week, I realised I can say goodbye to him when he's in the playground (not holding the hand of a teacher), and leave. He doesn't even want to follow me to the gate. He's on the slide, or on his scooter, and he's content (if not happy) to take on the day.

I don't like being the constantly negotiating Mummy, much, to be honest. Not least of all because I often forget the arrangements we've made, or (spectacularly this week) forget which day of the week it is. That is another story, which either involves some strange brain disorder or the admission that maybe my head is too stuffed full of professional commitments.

Despite the speedbumps, I thank my lucky stars every day we found hippy school. We don't always love it, but who does love school every day? Especially at the end of term.

Did I mention it's two days until the holidays? And that we're finally making the trip north, to the beach and the grandmothers and the in-house movies and the no washing up...?

It's that time again.

Sunday, September 19, 2010

A lesson learned the ugly way...

I have a friend who is on a similar journey to ours. She also has an autistic child. She weathers the same poop-storm we do with grace and insight.

She is also autistic herself.

This past weekend, a seemingly innocuous online sharing (she posted an article on FB that many, many of our friends also posted) turned into a really ugly insight into what can happen if families do not accept what I am going to start calling the 'validity of difference'.

I apologise in advance to the people involved, for mining your life trauma for blog fodder. But I think this is crucially important. I won't name you or shame you. Even the people I would quite like to throttle (were I able to do a kind of horror movie reach-through-computer-screens-choking sort of deal... surely there's a Hollywood movie in that...)

Autism is, in many people, a disorder of stealth. You can look 'normal'. Sometimes, you can even act 'normal'. With effort, some autistic people can transform themselves into 'normal' for stretches of time. It goes without saying that that transformation comes at a cost. For the uninitiated, that cost is most clearly seen in children having what look like snotty tantrums in supermarket aisles/playgrounds/birthday parties. There comes a point where the effort of subverting every biological message into an alternate brain/body dimension is just too much.

Anyhoo, I digress.

Back to the ugly online incident.

My friend posted something her siblings thought was stupid. Not unusual. My siblings think I'm stupid all the time. And for the most part, they are right. But, the reaction of my friend's siblings was something I've never seen before.

Actually, I lie. I have seen it before. In the playground. Or maybe in playgrounds in movies, where systematic bullying becomes the kind of abuse that would be an arrest-able offense should it happen in real-life/adult-life.

It was nasty, coordinated, unpleasant undermining of another human being. The attacks, despite many attempts from friends of my friend to defend or defuse, went on in a self-righteous tone that clearly showed these siblings were used to this kind of activity.

And it got me thinking.

My friend was not diagnosed until she was in her 20s. She was institutionalised in attempts to handle her difference, but no-one was able to give that difference a name until she was an adult. It seems like, lacking a framework for that difference, her family refused to give it any real validity. So they seem to have got into the habit of demeaning her as a method of course.

Why? Because they could? Because she saw the world differently? Because she didn't behave like other siblings?  I don't know... I'm not them.  I can't imagine justifying that kind of behaviour in my life, but clearly, they could. And they still can.

I want to draw a line in the sand. I want to make posters and t-shirts and TV ads. I can't live in a world where this kind of behaviour is OK and not speak out... because my son is growing up in it. And he sticks out too. He's different as well. He doesn't know, and shouldn't know in my opinion, that he should hide that difference lest the more 'powerful' decide to call him out.

I'd like to hope I knew this before I witnessed my friend's treatment (which she is handling with integrity, compassion and grace). I know it now.

For what it's worth, I also learned that autistic young people, even without appropriate therapy and intervention can grow up to be incredible human beings. They can be passionate advocates, dedicated partners, intelligent parents, superb workers and the very, very best of friends. Not in spite of their disability, because of it. Different, not less (thanks again, Temple).

I know this because of my friend. I'm not going to name her, but I am going to thank her.

By email. Seriously, I get the whole privacy thing. And I hope Billy understands that when random strangers start talking to him about his poop.

Thursday, September 16, 2010

A crash course in kid...

We've had an odd few days.

Along with having a nasty, chesty bug that just won't go away, Billy's been on an odd kind of rollercoaster - an emotional one. It's up and down, one minute sadder than ever, next minute really happy, next minute saying really troubling things like, 'No-one thinks I'm any good at anything...' and slouching off to another room (where is is suddenly, magically giggling again).

Catastrophiser that I am, I've been googling anxiety in autism, looking back at the old text books,   looking everywhere for ways to handle this new challenge. I've been trying to focus myself, telling myself anxiety disorders are common in people on the spectrum. It's cool. There are heaps of great books about it. It's not new ground, we can handle this.

I've been reading about biomedical and therapeutic interventions. I read this awesome book called Shut Up About Your Perfect Kid, about two sisters with SN kids - one with autism, and another with peadiatric bipolar disorder... just incase we were heading toward something really, mega-rollercoaster-y.

And still, we would have moments, often when Billy was at his computer where he would stop, sigh and say, 'I'm genuinely not so good at anything at all...'

Billy's language development is an ongoing game, and lots of phrases creep in from  external sources. So, I started looking sideways at the other kids at school, wondering if there had been conversations about Billy's deficits while he was close by. Not that there's anything wrong with that, seriously.  We'd all rather the conversations are open and honest. Billy's well able to advocate for himself, and an questions that are too hard for him will always be brought to us anyway. Hippy school kids have a tendency to overturn every stone they see.

I didn't hear anything (and no short person collared me with questions about different brains or funny wiring) so... I relaxed my Mummy Eagle Eyes at school and resigned myself to the fact that approaching tween-dom was bring with it the hormones of doom.

My suspicions deepened when Billy announced, after a giant coughing fit, 'I really truly am not very well...' Poor fella, he's feeling really bad... this is very unlike him. He's usually the trouper in the room.

When dinner came last night, he slumped his shoulders, shuffled to the table and said, 'Oh no, I will never, ever eat a potato, not even mash...' and burst into tears.

Hang on a minute...

I've heard that before...

So this morning, I went to his computer. First thing I checked was his YouTube history. Many, many repeats of Charlie and Lola. Then I noticed there was a Charlie and Lola dvd in the computer as well. Next to his bed, two Charlie and Lola storybooks. Ooooh kay.

If you are not familiar with Charlie and Lola (or perhaps have been living in a TV free cave for the last few years), it's a lovely piece of English children's television. It centres around Charlie who has this little sister Lola, who is very cute and very very funny. Lola is highly dramatic, incredibly histrionic, deeply curious, very emotional... are you getting the picture.

Billy, the king of scripting, has been mainlining Lola. He is feeling what Lola feels and... saying what Lola says. OK, I hear you... I should have been monitoring the screen time a little better, but he's been sick, and I have to work so... you know.

The interesting part of this long week's journey into Lola is that Billy is actually experiencing emotions that, up until now, he hasn't let himself go near. We're getting flashes of defiance, of anger, of pity, of deep sadness. I know a lot of this stuff can be really problematic, but a life without these feelings isn't ideal either.

So, thanks to Charlie and Lola, we are safely entering new emotional zones. He's rehearsing. He's trying it out. He's going through a crash course in kid, courtesy of the BBC. Thomas the Tank Engine has some fictitious competition.

We're talking a lot about what is Lola and what is Billy. We're making links from the TV stories into his own life. We're trying out Carol Gray's comic strip concept, to try and make sure that these TV scenarios 'come out' in the most appropriate circumstances. We've got the video camera out again, video modeling (funnily enough the dogs at the dog park are awesome subjects. We do voice overs)... We're trying.

I know much of the scripting, and the transference are linked to very real feelings in Billy. It's definitely not easy being Billy. Whether we like it or not, his almost seven year old world is increasingly populated with ghosts and ogres and monsters and scary things. Some of them are real, and some of them are not real, and some of them have a spectrummy veil over them and are a little more challenging to wrangle.

I'm figuring if all else fails, I've got like 80 C&L episodes to mine for life experiences. Between Charlie and Lola and the dog park... we'll fill it all in somehow.

And if I get a minute, I'm thinking The Adventures of Typical Kid (and his sidekick Aspie Boy) would make a really awesome kids TV show...

Monday, September 13, 2010

There's a gap...

I seriously need a drink...

Today I took Billy to a psychologist to have another ADOS done. He was diagnosed using the ADOS in 2008, and while it meant we had a piece of paper with Autistic Disorder on it (and therefore could apply for funding and support for schooling), that was it.

What was I expecting? Something useful. Something meaningful. Some information about autism, how it relates to my son and how we might best help him navigate his way through the next little bit of life. What we got was a cut and pasted report, with whole paragraphs verbatim from reports given to other kids. I don't know whether the test gives suggested text for parent reports or the practitioner has her own suggested text... but the report was not helpful. And BTW, do they really think parents don't compare reports? Trust me, we do.

So, given our decision to try to get Billy an aide at school, and the fact that his government funding runs out in November, we thought a new report would be... at least, more helpful.

The ADIR part of the process was useful. Mostly because the questions focussed on comparing how Billy was at 4-5 (first full dx) and now. I discovered quite a lot through the process, especially about the issues that have changed significantly (social understanding, social language, non-verbals) and the things that have stayed the same (sensory sensitivities, play preferences).

So, flash forward to the ADOS today.

First, allow me to set the scene. Billy has never met the psychologist before. Nor has he been to their clinic. It's a totally new experience. Billy is good with new experiences, so that in itself was not an issue.

What was an issue (the first issue), was the psychologist's choice to tell Billy (without consulting me) that Mummy was going to go away and have a cup of coffee and he could go into her (as yet unseen) office with her.

Excuse me? Are you kidding me? What child is comfortable being left in an unfamiliar space with an unfamiliar adult for an indeterminate length of time? Let alone an autistic child who is about to attempt a complex behavioural assessment. And while I'm on this point, what messed up kind of world are we living in that we expect that to happen?

Off my soapbox, I took Billy's hand, made it clear that I would be staying, and we moved into the office.

First thing I noticed was the open windows, letting in all the busy street noise - people talking, trucks trundling past, vacuum cleaners from the office next door blaring. The baby in the waiting room, bored with waiting (and perhaps the room) was making its feelings clear as day through the closed office door.

In that office was a second women. I still don't know who she is, as she didn't introduce herself. First thing she did, was let out an almighty cough. Billy's hands went straight to his ears and he started to cry. I explained that Billy had hyperacusis (though I'd be assuming that someone in the office during an assessment would have taken the time to read the freaking paperwork) and that coughing is not something that makes his life easier. She apologised.

Then, the psychologist started the assessment, using the strangest sing-songy, bad kindy teacher voice I've ever heard. Billy, in his overwhelmed state, raised one eyebrow, slumped in his chair and started yawning.

Then the mystery lady blew her nose.

Billy had one of two answers to every single question - 'Yes' or 'Everything'. That was it. He slid off his chair like liquid every five minutes. He looked around at me for reassurance every time the sing-songy psychologist hit top C. It was a freaking disaster.

Apart from some very cute pretend play with very odd superhero toys (what almost seven year old knows who Aquaman is??), he achieved nothing, completed none of the tasks, gave nothing resembling a correct answer.

And every ten seconds, mystery lady cleared her throat.

Thirty minutes into the session, I asked mystery lady to leave. She was miffed, but she complied. Billy perked up slightly, and started cracking jokes, but the damage was done.

The whole experience sucked.

Now, I get that kids have off days, and circumstances are rarely perfect, but seriously, this was a joke. There was no effort made at all, to set this situation up for Billy to succeed. The noise, the extra person, the stupid patronising tone... What were they thinking?

But, whether this clinic sucks, or the ADOS itself sucks (it is our second time, and I'm starting to think it does really suck) there's an issue here.

The issue is... what freaking use in the whole world is this process for anyone? What possible benefit (beyond a first time dx, and even then I wouldn't trust these people to accurately diagnose a decapitation) is there?

Will anything in this upcoming report say anything at all about what Billy can do or is capable of? The answer is no. And I know the answer is no because he showed nothing of what he is capable of, at all. Nothing. Not one thing. Beyond the hilarious making of a bed for Aquaman with a spiky hairbrush pillow and Wonder Woman's cape as a blanket.

It's a daunting prospect, but I'm quite happy to captain this autism ship. But I need some freaking help, people! I need experts. I need people who know more than me to get to know my child, understand the disorder he lives with and give us some advice about how to take him forward. I need an assessment tool that allows him, like his peers, to succeed rather than fail.

It's not rocket science that a kid on the spectrum will fail at or struggle with certain tasks. Not being able to 'show and tell a random stranger how to brush their teeth in an invisible bathroom'? No real news bulletin. My question is WTF is it in the test at all?

If we're going to do simplistic, no-brainer style tests, what about doing an autism screening that tests how many awesome voices my kid can do from TV, how many Thomas trains he can name, how many episodes of Garfield he can re-enact.

I know I'm sounding like an idiot, but there's some seriousness to what I'm saying. Really. I promise.

Here it is. Why are we working on a deficit framework? Why are we looking for 'can't do', why are we not exploring the autism can do? What is it about autism that means we ignore the abilities, and spend our time frantically trying to repair the inabilities?

Only last night, the Silent Partner and I were commenting on the fact that our (much contested by the ill informed) decision to allow Billy to learn through the things he loves has paid off in spades. Thomas the Tank Engine has taught him numbers, letters, colours, positive social language and a kick-arse English accent. David Attenborough has give him a love of drama, an understanding of big item issues like death and fear, and an encyclopaedic yet completely useful knowledge of animals.

I'm thinking, surely, we want to see what we believe a child's potential is... not just what their limitations are. I'm thinking, we (OK, I) want some help to shepherd Billy towards the most possible success. I think we need a screening tool that individualises autism, that acknowledges that life is a family-centric journey and that celebrates the fact that skills and interests are (at least possible) highways to a better future.

I'm not an expert, but today I met experts who are not experts either. And they are not the first. I don't blame the sing-songy psych or mystery lady for today's travesty, though they did a grand total of nothing to make it less of a cock-up. I do sense that both the test itself, and the lack of suitability of a lot of the  circumstances of testing (lack of relationship skills in the grown ups, distractible elements in the physical environment, complete disregard for the specific sensitivities of individuals on the spectrum) seems to be counter-productive... and soul destroying.

I totally accept that my son is autistic. What I do not accept is that he is a failure. And I do not appreciate either of us getting that message. He has come so far, and has qualities and abilities that most kids his age  would dream of, if six year olds were into that sort of thing.

Today sucked. And next will suck, when I have to go and get the report and sit through a (thankfully not sing songy, as she speaks perfectly normally to adults) recitation of it.

There has to be a better way. Because if there isn't, I'm going to end up drunk for the majority of the next two decades.

Speaking of which...