Monday, April 26, 2010

Popeye Party Boy...

This weekend was he-who-thinks-blogs-are-stupid's birthday party. The party was in a room, in a pub, in the inner west. Like the old days, when we could party all night without any obligations.

This time though, Billy came along too.

It was a tough ask, we knew, but we also feel the time is coming for us to be kind of 'out and proud' as a family. Billy is who he is, autism and all. We are also who we are, and that was/is people who really value friends, music, fun and the odd drink or two.

So, we all went together, on the understanding that I would not drink, so when Billy had had enough, he and I would head home, leaving the birthday boy to get smashed with his friends.

And so it was.

Billy was a freaking champion.

He sat at (OK, sometimes under) a table and had dinner (OK, a couple of chips). He loved the room, which was full of games machines (old school arcade games and foosball and ping pong). He loved that it was full of adults, who all thought he was charming and funny. Many of them hadn't seen him since we went into our self imposed exile around diagnosis time, so this giant grown up long haired boy was quite a surprise.

He chatted, he played and he found a little safety spot (amazingly next to the chocolate birthday cake) where he could play trains and re-group (and steal peanut M&Ms off the cake).

He also stimmed off the flying table tennis balls, charged from one side of the room to the other, hugged every person we introduced him to and forgot (twice) to pull his pants up before re-joining the party after a wee break.

It looked odd sometimes (to the unitiated), but you know what?

We couldn't be prouder (more proud). The birthday boy had a blast. I got to chat to friends in a pub for the first time in four years, and most of all... our family unit presented as a whole - Daddy, Mummy and Boy...

Popeye boy - he is who he is. Nyuck, nyuck, nyuck...

If only he'd eat spinach... now that really would be something...

Friday, April 23, 2010

Awards, and what they really mean... I think...

This week, Through My Eyes was recognised in the NSW Autism Recognition Awards.

It was a huge surprise, for a lot of reasons.

This is going to take a while... I may get a bit circular in my descriptions, so you have my permission to go somewhere else, or make a cup of coffee to get you through.

I am very fortunate to be able to make a living doing something I love. I love writing, and I've loved writing since I was a little kid. I loved it at school. I loved it at university. I was the idiot who actually liked writing assignments because it was fun pulling research together into some kind of expression. I was lucky that it was possible for me to make a career out of stringing words together, even though many times it wasn't much of a living.

A lot of the time, especially when I was still working in the theatre, I would question what the hell I was trying to do. We had lots of high ideals about holding a mirror up to nature and all that stuff. We had a lot of definitions about what art was, and what it wasn't. But, at the same time, I'd be thinking why should I expect people to drop $50 (it was the 80s and 90s) to watch people pfaff around in frilly dresses?

So, it seemed logical to stick with writing for kids. I could see the effect it had on the audience. I could almost quantify it. I got the chance to work with great people, and more importantly great kids. I got to experience great moments when you could literally see the light switching on in a kid's eyes. When they connected with the words I'd written, or identified with a character one of the actors had brought to life... there was magic in those moments, and that magic felt good. Good and useful.

Plus, every time I tried to write something for adults theatre-wise, it sucked. Let me re-phrase that, I sucked. So kids, it was.

Television was even more practical. If you get it wrong, you're out, so it was a much more quantifiable beast. High pressure, clear guidelines, relatively easy tasks in quick succession. Kids TV, even more so... it remains a massive gift to be able to make kids laugh, smile, remember the alphabet or what a musical instrument looks like.

And then came Billy.

Like most parents who work with kids prior to their parenting experience, I was shocked at how much I didn't know. I was inspired to use the instinct that he uncovered in me, to make even better work for little ones. Hi-5 has been an amazing job, a flexible, dynamic, supportive job where you can walk in and say 'I'm thinking of rapping beavers', and people go, 'Yay! Go for it!' And lately, working on shows like Magical Tales has shown me you can push boundaries for yourself and for kids and really make change.

That's all theory though. And Billy, and many other kids don't necessarily fit into the theory.

Along came this little boy who relaxed (and I mean legs crossed, arms behind the head) in front of long stories on the TV when he was under one year old. He learned really quickly from a TV screen - letters, numbers, colours. He would choose the TV over people (especially kids) every time, especially if the TV was showing kids. He memorised whole episodes of kids shows, and a few commercials as well... Which was around the time we worked out we needed to seek some advice from the professionals.

While we were seeking that advice (it took a while, given the almost complete lack of understanding we got from the doctors initially) I got thinking about what I do, and who Billy is. I realised I had some skills that could be useful to him, beyond cuddling and cooking chicken nuggets.

It has taken me a long time to get this stuff together. I'll re-phrase again... It is taking me a long time to get this stuff together. What I know, though, is that I won't stop trying.

I'll get things wrong, and I may get a few things right, but if words and pictures can make life easier for Billy to understand, then I'm going to keep on rearranging them for him, and others like him.

So, I come back to the awards night this week. ('Finally', I hear you say)

There are a bunch of serious advocates and heroes out there, doing amazing work with and for people on the spectrum. People lobbying governments, people researching, people working on the coal-face every day, people living with autism... and I'm just doing what I do.

I'm not studying for years. I'm not cleaning up poo (much). I'm not restraining my child while he injures himself. I'm not wrangling a bunch of assaults on my senses every minute.

I'm just doing what I do. But with a function and a reasoning that the me in the 80s and 90s was really hoping existed.

And it still seems like a luxury that many never get to experience.

Thank you everyone who puts up with me. Thank you everyone who jumps on board with another crazy scheme. Thank you (especially) to the ones who stick their necks out and believe in me (often more than I do myself).

It is a nice surprise. On a lot of levels.

Wednesday, April 21, 2010

Good News from Good News Week

There was a little storm in an Australian autism tea cup this week, centred around a variety/celebrity show called Good News Week.

Someone made an autism joke, which sounded a bit like it was supposed to be an epilepsy joke, but none the less it was tasteless. There were complaints, mainly because it was a pre-record of a live event, and the network could have chosen to edit out the joke. They didn't (clearly) and cited the fact that the host of the show made a kind of admonishing rebuttal as the reason why.

While I totally get that comedy is comedy, I don't really see autistic kids as funny fodder.

Do I think there are funny things about autism? Yes. Absolutely. Having your child bowl up to a complete stranger and quote a TV ad or a stretch of David Attenborough is really quite funny. Especially if said stranger has no experience of autism. Seeing your child shuffle down the hallway having completely missed the part of leaving the toilet that involved pulling up undies and pants... it's funny. Those things are funny in a sight gag, OMG is this really my life, kind of way. And I know we're lucky to have the sort of relationship with autism that gives us the chance to giggle occasionally.

Seeing your child laughed at by others... that's not so funny. Seeing neuro-typical people mock something they can't possibly understand... definitely not funny. To me, at least.

And that's what happened on Monday night's Good News Week. It's not like poking fun at Queenslanders or pointing out the stupidity of people's fashion choices... it's like giving people permission to see difference in the behaviour of a child, actually my child, and saying 'Go ahead, laugh at him, he won't be offended...' Queenslanders or people in bad pants can fight back, rebut the jokes... my kid cannot. By the very nature of his disability, he cannot.

It's a cheap shot, really.

Anyhow, I wrote an email to the Executive Producer, saying I get where you are coming from (comedy and all) but I'm not sure encouraging people to laugh at autistic people and their behaviour is a good move for anyone.

And, he wrote back.

He apologised. He said in retrospect he should have taken the line out of the show, and he made the wrong call. He didn't need to do that...

I'm seriously impressed.

TV, not surprisingly, is not known for its sensitivity, or for taking responsibility for screwing up. It's usually full of bravado, smoke and mirrors. And I'm not slamming it just for fun, I'm one of them. It's where you'll find me when I'm not here crapping on about my homespun theories on autism and everything.

So, thank you, EP of GNW. Apology completely accepted.

We're all human.

Even the autistic among us.

Monday, April 19, 2010

Josh, look what happened to me!

'My two front teeth fell out!!'

This came out of my son's mouth, directed at one of his classmates, less than five minutes after we arrived back at school. We've all had two weeks off, and as usual, we've allowed Billy to steer clear of most kids.

So I'm thinking it's going to take a few days before he jumps right back into the world of kids.

But no... he's back among his peers, watching, commenting and spontaneously sharing information about himself. Wow. Wow. Wow.

I wish I'd had the presence of mind to take a photo, because the phrase was accompanied by a very funny lifting up of the upper lip with the fingers to show off the full beauty of his toothlessness. Hang on, that's an appropriate gesture, added to a peer conversation.

WTF? My kid? No...

Every day, along with the constant taps on the shoulder about what's different about my boy, I get a burst of hope. A little puff of air that surrounds the two of us like a bubble.

And bubbles make everyone feel better, right?

Sunday, April 18, 2010

Don't get me wrong...

But I hate it when the holidays end.

For all the practical reasons, I totally get the 'thank God the holidays are over' cries. I do definitely look forward to having more clear time in the day... but...

I love seeing Billy relaxed. It's so lovely, especially as he grows, to see him choose his own amusement, and to see his attention levels and stamina expand, to hear his growing opinions about who he is and what he's doing. It's lovely to see him not overwhelmed.

I know they do brilliant things at school. They really do. Billy's school is amazing. It gives me faith in so many ways that the world (never mind just Billy) will be fine. I know he is safe. I know he is loved. I know he is OK... but...

I miss him. I miss the stuff we do together. I miss being the one who knows everything about him.

I worry about him. I worry that he's such a solo player, that he's all alone in a sea of sensory overload. I worry he's lonely.

It struck me recently that this whole special needs thing brought with it a special bonus. It meant I had an excuse to keep my boy close for a bit longer. I don't mean to sound like a crazy over-protective Mum, it's more that I am charmed by him, entertained by him, inspired by him. He's really good company, always has been.

I like to work. I really do. I'm really lucky to be able to do something that I can do from home, fairly flexibly. (Though I'm sure lots of the people I work with don't see my availability as very flexible... sorry about that). I love what I do.

Billy, though, is like a gift. I still can't believe he's mine. To be honest, I'm still amazed that he-who-thinks-blogs-are-stupid wants to keep playing, so Billy's quite the bonus. Even Scruffy adds his own flavour to our little family.

I know our family is very different to other families. I know we do things differently, see things differently, act differently... but we're us, and we make me proud. In our own odd way.

Which brings me back to the fact that tomorrow we must but up against reality again and go to school.

Maybe I'm just struggling with the idea of getting up early and being organised. Or that I have no excuses now, and will have to buckle down and work.

All of a sudden, this 'I love my son' business seems a bit shady doesn't it...

Saturday, April 17, 2010

Me and Biomed: it's complex

How I wish I was one of those people who was able to leap into things with both feet and just go with it. It's just as well I'm not a professional athlete, because apart from truly sucking at sport, I'd make a truly hopeless client for Nike sponsorship.

Not that they seem picky at the moment...

I want to improve Billy's health. That is the guiding principle.

But the space between that statement and what I choose to do to make that happen is wide and full of little distracting critters and oddity.

Maybe if I tease it out here, I can make some decisions that will make actual sense.

I've read some very convincing books, along with a pile of kooky nonsense.

The ones I was convinced by seem very credible... here there are:
 - Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders
 - Changing the Course of Autism: A Scientific Approach for Parents and Physicians
 - The Puzzle of Autism: Putting It All Together
All good, solid, easy to understand, doctor-y stuff.

We completely de-chemical-ed our lives, eat as much organic food and drink only pure (RO) water. But that's pretty much where my biomed journey stalled.

We shunned 'the diet' (GF/CF) for a long time. But, Billy definitely handles dairy badly. When he was much younger and addicted to 'Thomas' milk (milk with Thomas the Tank Engine on the tetra pack), he would often randomly vomit. Always after milk. He also had shocking, unexplainable bouts of constipation that ended in a diagnosis of megacolon. Not an anime villain, a truly debilitating bowel condition that took a LOT of work to turn around. A tip for new players, do not Google megacolon, because the Google image results will never leave your mind's eye.

So dairy is gone. Which means a calcium supplement at least. Our biomed dr recommended a good Calcium/Magnesium liquid, which is great as a combo, especially because magnesium is really good for general calming and for hearing sensitivity. So, we have it. Unopened.

Let me mention here that I would love to get gluten out of our lives too. And as I type I think I sound so lame... get gluten out of your life. Just do it, right?

We have a great ASD multivitamin powder. Unopened.

We have Cod Liver Oil + D. Unopened.

And b12 drops, because I'm too chicken to do the shots. Also, surprisingly... unopened.

Why am I wasting all this money on expensive supplements and not using them?

Because it's such a crap shoot. Because he has such awful reactions. Because every time we start any supps, he does well for a while and then he gets sick and then we have to stop until he gets better. Because we have spent so long getting toilet habits working right, I ate when we throw something into the mix that upsets his stomach and risks random poos at school.

Because I am so sick of sick.

And yet, I know he's not as healthy as he could be. He's not functioning at any where near optimum level. He could be doing so much better than he is, health and brain function-wise.

So... just do it.

I read about all these brave autism mothers who watch their children turn into the anti-christ as they fight off yeast and all sorts of stuff, and I die a little inside. I know I don't have the courage or the faith to put Billy through that. Even thought I'm well aware the outcome could be amazing.

I just have to bite the bullet, right?

I know I do.

I just wasted two weeks of school holidays not giving him the supplements in a place where it wouldn't matter if he pooped at the wrong time.

Gah! Just do it, Foley.

But then, look where that got Tiger...

Tuesday, April 13, 2010

Tonsil Talk...

There have been a few questions about Billy's tonsils lately and I did say I'd come back to them so...

Billy had his tonsils and adenoids taken out in October last year. We made the decision to do it because he was constantly sick. For the previous two winters (which goes from June to September here on the bottom of the world), he got every possible combination and permutation of respiratory infection known to doctors (and a few so freaky they just kept him in hospital with a stream of doctors shrugging their shoulders and x-raying his lungs a lot).

He was skinny, missing a LOT of school, miserable and freaking expensive. That reads really badly, but by the time you count the costs of hospital admissions, evil antibiotics and other drugs, lost work time blah, blah, blah... it grinds down the bank balance.

So, it took a bit of convincing the doctors (Lord, I got sick of doctors telling me that little kids get sick, despite the fact that Billy was off school at least five times more than anyone in his class), but eventually they agreed.

Billy's biomed doctor suggested we ask the anaesthetist to avoid the use of nitrous oxide. Once I'd read up on it, I agreed, and floated it with the ENT. He made a very good suggestion which was for me to speak directly, face to face with the anaesthetist. I did, and he agreed, despite never having heard anything about the concerns I had. I have to give both of those men kudos for that.

The process was quick, the doctors were very nice and he was home on the afternoon of his operation.

And that was where the fun began. The recovery was rough. Really rough. Lots of vomit. Lots of up and down - one day good, one day crap. Lots of serious pain, especially once we got to ear recovery.

But, almost immediately two things happened.

1. He slept quietly and still for the first time in his life. No snoring, no fussing, no constant movement.
2. His peer related language opened up almost immediately. He visibly relaxed.

This has kept on going between then and now. He is conversing with his peers now, which he NEVER did before. He still chooses adult company, but he can talk to kids. I think it's because he can breathe properly, finally. It makes me sad to think of how he must have been struggling for oxygen for so long.

And most importantly, he has had a total of two infections since then. Now, it has been summer, and there was two months of school holidays in the middle of that, but still... that's a big change.

I should add that Billy didn't ever have many ear infections. It's one of the very autistic things that he's managed to avoid. He's had a few, but no more than your average kid. And most of them he's fought off without antibiotics.

All in all, the tonsillectomy and adenoidectomy were huge successes in Billy's life. He is sick less, talking more and generally more chilled.

And not surprisingly, so am I.

Monday, April 12, 2010

The Magic Words...

Age Appropriate...

I heard them today, partially in relation to Billy. And as much as I'm all about not making meaningless comparisons between Billy and other kids, and all about the autism being a good thing... it felt good to hear those words.

We've been really lucky with the government funding Billy qualified for under the Australian Government's Helping Children with Autism Package. We'd done a lot of EI before the funding was established, so we've been able to use it for great extension type activities.

Like therapeutic listening, which was next to useless when Billy was younger, but much more effective now.

And, Fast ForWord, an awesome computer package based around the concept of neuro-plasticity which I initially heard about from hearing Norman Doidge on the radio and then reading his book (The Brain That Changes Itself: Stories of Personal Triumph from the Frontiers of Brain Science (James H. Silberman Books), has been really useful for Billy. Which reminds me, we need to start the program up again, we've had quite a break since Billy had his tonsils out (another story for another day).

We also decided that we would use the funding to get assessments in speech and OT before the funding finishes up on his 7th birthday. Today was the beginning of the speech assessment process.

And it was really, really impressive.

Don't get me wrong, Billy has a lot of speech issues. He scripts his head off. He struggles with pragmatics, his processing abilities are pretty significantly compromised and that makes stamina and multi-step directions challenging. But... his grammar, his sentence structure, his vocabulary, his receptive language, his non-verbals... man, he's come so far.

He loves to please the people he loves, and that's a good thing. He has great cognitive skills. He loves to learn new things. These are all really handy things.

I pushed our lovely ST to say it, but she did say, in the cognitive areas of speech and language, he is definitely in the age appropriate range.

When he turned two, Billy had less than twenty words. Most of those were incomplete approximations of words. Now he's got some age appropriate skills...

Hearing that was magic.

And I know he's got a lifetime ahead of him, but I really feel like our theory of letting him be, but with guidance is really paying off. He is learning and growing. He is loving and he is brave.

It's a long road, but today, it seems like a familiar local road, not a long yawning highway.

We are so proud of you, little man.

Saturday, April 10, 2010

Pulling myself together... bit by mega-bit

This seems completely trivial given what Billy lives with on a day to day basis, but I think it deserves a bit of airspace.

During the EI years (from Billy's age 2-5), I used to joke with the other mothers that a diagnosis was worth five kilograms for the mother. I think it took that a little too much to heart, because about four weeks ago, I realised a few other people in this house must have got a few sneaky diagnoses, because I was about 15 kilograms above where I should be. And I'm not being kind to myself. Really, consider my height, consider my BMI, consider the flobbely woman who looked back at me when I tried to avoid her gaze in shop windows... oh dear.

So, the Wii Fit (kindly bought by he-who-thinks-blogs-are-stupid on my insistence a whole year ago) was dragged out from the dusty netherworld beneath audio-visual land. And despite the big fat Mii it made for me, we have agreed to spend at least 30 minutes a day together. We just passed 10 hours of exercise fun (something turned bronze... I can't recall what), and so far so good. I've lost a few kilos, I've changed shape completely and... I feel 100% better.

I now get that it's not that I don't have any clothes, it's that I looked (and felt) horrible in the ones I had. I now understand that I can sweat, and yet keep on going. I've learned that hula-hooping looks really, really funny when you don't have a hula hoop. For a skinny bit of plastic, it covers a lot of funny looking movements.

I guess, even more importantly, I've learned that it is not hard to find 30 minutes every day. What's hard is to get off your butt and do something with that 30 minutes.

I could ascribe all sorts of deep and meaningful stuff to my decision to get healthier. And there are really good reasons, some obvious, and some much more closely aligned to my irrational Irish catastrophising fears. Don't let me get started on that stuff.

At the end of the day, it's all about doing something right. For everyone. I am Foley, hear me roar. Well, more gasp for breath as I jog through Nintendo world... even in my breathless state, the world seems like a better place. It's all looking good.

Except that fat Mii. I really don't like her. Not because she's fat, of course.

Friday, April 9, 2010

The Zoo is a zoo

Today Billy and I went to the zoo. Bet that surprised you, after reading the title...

We are Friends of Taronga Zoo, and we have been for the last four years. It was a deliberate move on our behalf, once we knew Billy loved animals. It's a strong bond, and something so strong, can be incredibly useful. Even as a tiny boy, a toddler, he was entranced by animals. He was naturally gentle, and completely unafraid.

If only we could say the same about little kids...

He was terrified of kids. He still wouldn't choose their company, but as a little one, the fear was immense. He would freeze in place, hold his hands over his ears, cry if they made a noise even a squeak over normal voice level.

In fact, it was a birthday party, when he was eight months old, that made me first seriously realise there was 'something' going on. We had friends who lived around the corner who had beautiful twin boys. We saw them almost every day, when we walked our dogs together. The boys were about fourteen months older than Billy. Their 2nd birthday party was the first one Billy had ever been to, and I was pretty impressed with how he handled it. He sat on the floor, in the middle of all the ladies, making goo goo eyes and smiling at them as they chatted to him.

Then the kids arrived. There were only five or six, aged from the birthday boys up to eight years old. The eight year old was particularly hepped up on party goofballs. Curiously, it turned out he has Aspergers. He had a shriek that could wake the dead, which he shared with us all as soon as he entered the room.

Billy jumped a mile, and cried like he'd been hit. So much so, that I really glared at the ladies around him, thinking one of them had stepped on his hand or something. Then the kid shrieked again, and the same cry came out of Billy. I picked him up and comforted him, and he calmed a little. Then came shriek number three. Again, Billy jumped, tensed and cried and cried and cried. So I carried him out of the room and... as soon as he was away from the noise, he stopped crying. No recovery, no nothing. Just fine. We walked back into the room, and the kid shrieked and... tears.

At that moment, my heart broke. I knew something was going on. I wasn't sure what, but I knew it wasn't good.

I couldn't get out of there fast enough. I packed up, picked up and walked home in floods of tears. Billy clung on like a koala, looking back over my shoulder, babbling, unaware of the tears pouring down my face. He was asleep by the time we got home, and I started my first obsessive googling run.

The obsessive googles still happen, but their frequency has lessened hugely over the lest six years... as I refined the search... and eventually found the key words that would become defining features of all of our lives - hypersensitivity to sound, hyperacusis, sensory processing, autism.

So... today, we went to the zoo. Six years (give or take a few months) from that day, and my brave boy was such a champion. It truly sucks there during school holidays. It's FULL of freaking people. People who don't usually go to the zoo. They can be truly foul too - yelling at animals, arguing with each other, complaining, leaving rubbish everywhere... ugh.

But, even with the crowds, Billy stuck it out, he coped, he even enjoyed himself.

As he has learned over four years of at least weekly visits to the zoo... it's all about the animals. He looked, he talked, he corrected people when they got the names of the animals wrong. He said, 'excuse me' so he could get a good view, and sometimes disappeared six deep into a crowd with just a glance back over at me, over his shoulder. My tiny man peeking over shoulders again...

So, even when it sucks, we love the zoo.

Thursday, April 8, 2010

Happy, happy, happy

I'm such a lapsed catholic.

I feel such guilt about my grumpiness. I really do.

So, I just wanted to write a few happy things... things that make me feel grateful.

Today, Billy lost one of his front teeth. He was thrilled about it. No squeamish freak-outs. Just exactly what you would expect from a six year old boy. Quite keen on the blood, interested in the additional lisp (he already has one) and generally keen to try eating stuff to see how it would feel.

This is his third tooth loss now... he's quite a pro.

He's put the tooth on a cushion to await the tooth fairy (because that's what happened on Hi-5). I'm going to have to go through old DVDs to find out what happened at the end of that Hi-5 segment. I hope it involved a gold coin, because that's all I got!

This afternoon, he had a bit of an energy dip. It's been a big day of dog walking, playing, swimming (school holidays at the moment) so it's understandable. The lovely thing was the way he brightened up when Daddy came home. All of a sudden, Billy was cheeky, funny, joking and wrestling with his Dad... again, just such a wonderfully happy Billy way to end the day.

In the freedom of the holidays, there is so much more cheeky... so many more experiments with language, so many casual actual conversations, so much evidence that he's putting together a really dynamic, flexible picture of his world and his place in it.

I am lucky to have this boy, and to have the ability and the support to try to make the world a better place for him.

Wednesday, April 7, 2010

Am I crazy or passionate or obsessed or what?

Sometimes I think I've gotta get some distance from all this autism stuff. Or maybe perspective is a better word.

Let me take you on a little mental journey (a mental little journey), and you can decide for yourself.

Last night, I read something on Facebook that made me furious. Not someone's request for hammers for their farm, or the fact that someone had joined a group praising the qualities of a bowl of fruit or anything... it was a link to an article about autism. Someone in Australia had posted it on the Autism Mothers page.

I've got a lot of time for Autism Mothers. I have a huge amount of respect for Polly Tommey, and for Autism File magazine. I'm deeply impressed with the work she and her colleagues have done in providing accurate, dynamic information about autism to the world.

So my expectations are high.

Anyway, the link was titled 'Autism in Australia' and it linked to an article from a community newspaper in Queensland (one of the States of Australia). It told a family's story, giving details of their situation and their two autistic children. It also made reference to the autism diagnosis rate - 1 in 160.


See, I'm flipping out just thinking about it again. The dx rate is now set in the US at 1 in 91, 1 in 58 boys. In Australia, it was established last year at 1 in 100. It's a huge deal, as the rate... the scientifically established, government mandated rate is changing rapidly and profoundly. And it has done over a very short space of time.

Now, I (clearly) have my opinions (me? opinions? am I kidding me?) about why those rates have risen. But I'm willing to accept everyone's ideas about why. Right now, I don't care why. I just care.

Doctors don't seem to know crap, and more than that, they actively resist engaging in discussion about autism as a medical condition. To them, it seems, autism is a set of behaviours.

Teachers (unless you are very lucky, and I will say, I am) are struggling with understanding, accommodating, accepting the ever changing information about ASD kids.

The general populace are swinging between sympathy, ignorance and that horrible self-righteous kind of judgement that old ladies on busses are famous for...

I'm raving again.

I posted after the article on FB, 'why are the statistics wrong?' The responses that came back shocked me. Soft, stupid (in my opinion) statements about how any awareness is good awareness, and that those were the most common statistics on the internet, therefore they were the best ones to use.


Are you kidding me? I'm not even going to start on the accuracy of the internet, nor checking your sources, or perhaps even double checking your freaking facts...

What concerns me is the 'oh we should be grateful for the meagre crumbs from the master's table' attitude.

That attitude is why our children are misunderstood and judged by their peers and their elders. That attitude is why doctors insist we vaccinate our children even when they have already acknowledged vaccine injury (and I'm talking about my child and my doctors here). That attitude is why the diagnosis rate is rising... because people are not paying enough attention to 'why'?

I accept that we, as ASD parents are on the coal face of something significant (as sick as that makes me feel). I accept that the only chance for change is for all of us to 'work together'. I accept that someone has to try and turn this ship around and slow down something that must be able to be slowed.

I do not accept that we should do that by slacking off on the details.

We live it, alongside our kids. We feel the hits when children call our kids 'weird'. We struggle to restrain  the loves of our lives when they are freaking out over a simple medical procedure or the sound of a fire alarm. We dream, just like everyone else, of a future where our kids can 'be' who they are.

I don't hate autism. I hate ignorance, I hate denial and I hate that there aren't enough services available for the diagnosed kids we have now.

Actually, I hate that I read something on Facebook and it made my head explode.

Time to give Billy a giant scruffling... that will make us both smile.

Monday, April 5, 2010

Billy's first imagined first person story

I'm so proud. Done by himself. Typed by Billy. Spelled by Billy. I helped find the picture.

Seeing a river dolphin
Billy (6 april 2010)

We hev gone inder to se a river dolphin.
Inder hes tigers.
Wev gonne to a boat.
We wsd a camera to se the the river dolphin.
The river dolphin cached fish.
He hes long nose.

I falt very happy.

I feel very happy too, baby.

(PS. he's six, and we've never been to India... or Inder...)

Here we go, acting like a 'normal' family...

As we all recover from chocolate poisoning (how is it that something so good can make such unpleasant things happen...?), I'm wondering if it's OK to say that we had a pretty 'normal' easter.

My lovely friend from long ago (thank you, Facebook) invited us to her house to have an easter egg hunt. Billy was thrilled, for lots of reasons. He loves my friend, he loves easter eggs and he really loves that her teenage son has a collection of 'old style' Thomas trains.

So, the grown ups got to BBQ and sip grown up drinks, while Billy found eggs and played trains.

I'll pay the fact that it's a very Billy style event (no kids, lots of trains). To be honest, I'm quite proud of that fact.

Because in this autism game, what we hope he learns is that who is is, is just fine. He's not always going to be able to be 100% comfortable, but wherever we can, we will make an effort to make things work for him. I do not subscribe to the theory (if you're a regular reader flip over this bit, because I'm sure I've said it before) that 'he has to learn sometime, so we may as well start now'. I believe he has to learn his way, and he has to learn what he is capable if learning. Lord knows, plenty of NT individuals never learn basic qualities like oh... compassion, honesty, empathy... and somehow, that's OK with society.

The idea is that Billy functions, learns, grows best when he is calm... Lots of little kids culture is not the sort of stuff that immediately screams the word 'calm' to Billy. So we don't force him to be in the middle of it, all the time. Mostly, we find a way for him to observe from a safe distance, and join in when he feels equipped to do so.  It means he may never be one of those kids screaming through the McDonalds play place, but I have a feeling neither he or us or society are losing much by accepting that.

The big picture idea, is this... Billy should develop skills to keep himself calm. Over time, he should learn to make most of those decisions himself, in the same way that protective behaviour is learned by any child. He's been given a body and a brain that are not naturally inclined towards calm in social situations, and so his life journey is in understanding that he will not die in the crowd at a basketball game, or in the darkness of the cinema or (god forbid) away from home at a sleepover.

And on easter Sunday, he had a calm social experience. We are lucky enough to have accepting and compassionate friends, who not only let him be, but who actively create situations where Billy's needs are at the forefront. I'm really thankful for those friends. Thank you, friends.

I know I'm supposed to be thinking about more traditionally spiritual qualities at easter, but I feel a bit like we got a good dose of those qualities this weekend... and we got to have a couple of beers as well.


Friday, April 2, 2010

30 000 times the words have been heard...

Last year, in response to a request from ASPECT (Autism Spectrum Australia), I wrote the words to a song.

I sent them to my wonder twin, composer Fiona Johnson, and she worked her magic.

We knew we had something very beautiful and (like most aesthetically pleasing things) powerful on our hands.

With the song in demo form, we approached Thanh Bui, who had been a finalist on Australian Idol in 2008. To be honest, I thought he seemed like a really nice guy (he is) and that his voice was just beautiful (I still agree with myself). I also saw how he carried his uniqueness proudly as he went through the Idol  machine. And he held his nerve, with a gentleness, but also with steely determination. We were very fortunate that Thanh agreed to record the song.

Next step, some financial assistance. This came from Thomas and Friends (soulmates of a huge proportion of autistic kids) and their parent company HIT Entertainment, through the incredible team at Haven Licensing.

Today, the day after World Autism Awareness Day, Through My Eyes will pass 30 000 hits on YouTube.

That's almost 30 000 times people have heard the words that I wrote for Billy.

I can't see the world in the same way you do, bud, but I can try to understand how it feels. More than that, if I can pull together any skills I have got to help other people try to understand as well... then I will. You have my guarantee.

Thank you to everyone involved. Thank you to everyone who has supported the song. Thank you to all the autistic people who truly live their lives with twice the grit I could ever muster.

Go on... you know you want to click it...

You've got to love autism at Easter...

Being a lapsed Catholic, and having lapsed well before parenthood, we're struggling a bit with the exact sequence of Easter weekend. Especially as it relates to the chocolate and baked treats.

So yesterday afternoon, Billy and I braved the shops to pick up Easter supplies. I say 'braved the shops' like it was premeditated. It wasn't. I didn't even think of the fact that the shoppers of Sydney would be in panic mode before they faced the bizarre phenomenon of a day where you can't buy alcohol.

We wondered why there were few parking spaces available in our usually deserted shopping centre. And when we finally found one, and headed upstairs... we found out why. Mostly, the elbows poked in my sides and in Billy's eyes gave us the message.

Ladies, in panic mode. The odd older man pushing his trolley full of minute steaks and frozen vegies through the throng. And a legion of children peeling the foil off easter eggs and licking the chocolate before replacing the eggs on shelves. Drool and all.

Not. Pretty. Not a bit.

We managed to find a ridiculous number of well sealed Easter Eggs (I went as far back in the display as I could, but now I'm thinking that might have been playing right into the foil peeler gangs' hands..) Billy needed a lot of eggs. Or so he told me. So, in Billy speak, we 'collected' Easter Eggs, and fish (there's that crazy old catholic thing again), hot cross buns (we've been eating them for months, I didn't know they were strictly Good Friday food... the ones we ate in January would have been mighty stale by now) and a pile of random must have Billy supplies (picky eater, anyone?).

From the moment we arrived home, it was time for an Easter Egg hunt. I managed to hold him off until bed time, when he announced we would hunt for eggs tomorrow. I agreed we could hunt for little tiny eggs. I have no idea what saint's memory I smote with that decision. But I'm sure some guy is shuffling in his sandals.

In the morning, we got through breakfast with only eight or nine... hundred reminders about the impending egg hunt. Then, after breakfast came the announcement. We need an Easter Basket... and it needs to go 'around, and up and across and down'. Right, then.

I need to go back a little in history, to sometime around the catholic lapsing. It was the 80s, and along with Wham and U2, I was finding out all about feminism. It made a lot more sense to me than the random believing of men in floaty dresses. So, God out and girl power in.

The knock on effect, apart from a partially shaved, gravity defying haircut, was a complete dismissal of all school subjects and life habits that could be construed as 'girly skills'. Motor coordination was never a strong point (still isn't unfortunately) and so I gleefully freed myself from the demands of typing, home economics, art, craft... pretty much anything useful. I lost myself in the very practical world of ancient history, french and drama. What was I thinking?

Well, flash forward to this morning, and I was asking myself the same question. I needed to Macgyver  up a cute looking Easter Basket that went 'around, and up and across and down', and I needed to do it quickly.

I'll save you reading too many more words, and let you know that the basket I made out of a snipped up coat hanger (goes 'up, across and down') and a dodgy wicker cracker basket (goes 'around') served the purpose only because Billy was jumping up and down so fast he could barely see how crap it was. I'd post a picture, but the basket fell apart after Billy put one miniscule chocolate egg in it.

He hunted, he found, and while he did try all the eggs (Creme eggs and Caramello eggs suck, white chocolate is not chocolate, and Crunchie eggs are for Mummy...) he only fully ate the ones with the familiar Cadbury purple label.

Tomorrow, we have a giant chocolate Bunny to eat. Though Billy uses the word 'we' very loosely.

And on Sunday, he has lined up not one, but two hollow egg hunts. One at home, and one at a friend's house.

It's the religious event that keeps on giving. Which makes me feel very guilty for the lapse, and therefore very conscious of the catholicism.

I don't mean to offend the religious, by the way. I've got a feeling they would be much better at providing a manageable context for all this chocolate hunting. And for that, among many things, I've gotta give them props.

I hope everyone is rested and calm and less caffeinated than my son.