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...

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.

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.

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?

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...

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...

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.