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...?