A bit of faith in the future...

This evening a friend came around with her 10 year old son.

Billy and this boy have known each other since Billy was born, though they don't see each other very often. My friend is, herself, one in a million. Incredibly (or maybe not), her son is one in a billion. A truly special human being.

It's a lot to put on him, really. I'm loading this poor boy with an awful lot of responsibility, but maybe I can explain why it seems like he can take it.

He's a gentle, witty soul, one of those people who can observe and participate at the same time. He's a talker and a listener. Even as a pre-schooler, you could see he was an all-rounder. He could pretend. He could analyse. He was cognitively bright, and empathetic at the same time. Now that he's older, he's clearly a kid, but he's already stretching one tentative gangly limb into adulthood.

Billy's not a fan of kids generally. But tonight, as darkness fell, he climbed into his trampoline with his 10 year old friend, and together they went spotlighting for possums and bats. They talked about aircraft and star formations together. They bounced together until it was too cold to stay outside anymore.

It's times like these when my fears about the future fly up and away with the aircraft and the bats.

My friend's son (and my friend) remind me that there are people on this planet who can reach right through the defences and engage Billy on equal terms. They observe, they listen and they find their way in, not feeling like they've lost anything along the way.

And when they do, Billy steps right up to the plate. Or the trampoline, as the case may be.

That makes the future seem kind of... bouncy.

The boy is a sponge...

There's something really cool going on at the moment.

It's like Billy's brain has been switched on in an awareness cognitive-y kind of way. Every where we go, there's a little voice asking, 'what's that?', 'what does that do?' what's it for?' He reads everything, he comments on everything, he shares his knowledge on everything.

I guess sometime soon it might get annoying. But for now, it's charming and interesting and means we're having conversations where I've finally stopped counting how many exchanges there are.

It makes me think back to the Bubble Days. The days after our cheeky little toddling boy retreated into a frightened dirt sifter. He didn't really play. He seemed constantly stressed and exhausted. Everything was hard, for all of us.

First the OT came to visit. Within a few short sessions, the hopeful smile came back... you know that look that little kids get when they think something fun is going to happen? It took a bit of shaving cream, and a few goes on the scooter board and a couple of hugs on the trampoline and our Billy started breathing a little deeper.

Then came the ST. She came to the house, and Billy fell in love on the spot. It didn't hurt that she had bubbles in her bag. She blew bubbles, his eyes lit up. She stopped, until he pulled at her hand. She said 'More?'. He grabbed at her hand again, and she looked at him and said, 'More?' He looked right back and said 'More.'

And so, it began. The Bubble Days lasted a looooong time. But it marked the point where we (grown ups) learned to speak again. Simpler, clearer, with more pauses and eye contact. By our changing the way we spoke, Billy was able to learn to speak. Word by word, phrase by phrase, topic by topic.

We counted every word for a long time. We knew how many nouns and verbs he could stick together. People thought we were crazy, as our fingers flicked and our mouths twitched through counting. We hugged him a lot (and that's really saying something) as his count increased.

Not long after the start of the Bubble Days, we worked out that Billy loved songs. He could speak the lyrics of songs easily. So we started singing a lot (maybe that's flattering ourselves), really we started putting everyday activities to a dodgy beat. We invented songs about dinner, songs about the toilet, songs about the car, songs about the dog. Bit by bit, Billy joined in.

Then we started video modeling. It was a stroke of genius in Billy's life. First we watched Watch Me Learn. Seriously, within one viewing, Billy was answering the question, 'What's your name?' He saw other kids do it, on a screen, distanced from the social pressure of being around actual kids, and he learned it. Just like that. Of course, once he'd done it once, we jumped up and down like idiots and reinforced it again and again and again.

We loved those dvds. We still love them. He still watches them. They've taken him through friends and play skills and school...

There's a tiny little interview at the end of the WML dvds, with Mary Beth Palo, who created them. She talked about how they saw their son learned easier off a screen, and so they started taking their video camera everywhere with them... 'We've got a video camera', I thought... so we did the same. And boy did it work.

A couple of our first outings, to the train shed (a Thomas themed family place... be prepared, beyond the Thomas trains, it's grim as hell) and to the zoo. These were repeated a million times, but these home videos (and many others we didn't put on YouTube) changed everything for Billy's language development. Seriously, everything.

Then we discovered he loved other languages (thanks to Dora the Explorer). He started seeking out alternate language subtitles on dvds, and looking on YouTube for French, Spanish and Japanese translations of his favourites - especially Thomas and Hi-5. Again, the logic is easy, once you get into it... it's language, without meaning. He already knows what it means, so he's not struggling with understanding. This gives him the freedom, the joy of freestyling with the beauty of words... like we all do (or maybe I'm revealing what a nerd I am... bit of Dylan Thomas' Under Milkwood, anyone?)

It's been four years of focussed slog really. The confidence of knowing that, pragmatic challenges aside, he's linguistically safe, is immense. He can express his needs. He can parrot his address. Man, he can parrot entire episodes of David Attenborough's Life of Mammals... but (again) I digress.

The point, for Billy, was to reduce the stress around both receptive language (understanding) and expressive language (talking). First, he needed to understand - hence my annoying, sing song on the early videos. Then he needed the space to talk (I try my hardest to STFU now).

To see him filling in the gaps, asking strangers questions, offering his services as a ball thrower for dogs at the park... it makes me want to cry with relief. He still makes mistakes, but all it takes is a day in Billy's class to see that kids all make mistakes, in all sorts of ways (and so they should).

We didn't think we'd get to this point.

And it makes the future seem so much more possible. Makes me want to go outside and blow bubbles for the hell of it.

A bit of healthy cynicism...

I've always thought having a critical mind was a good thing.

But over the last few days, I've started wondering... I know this will come as a surprise, but it's another autism issue that made me wonder.

A day or so ago, I read this article.

It's flagging the results of a study where they have discovered a particular chemical profile in the urine autistic kids and their siblings. It connects the gut function question with the genetic component of autism, and so, opens the question of whether that gut function can be corrected or repaired, thus decreasing the impact of potential autistic symptoms/behaviours/presentations.

I was really surprised to find that many parents seemed to think this was another in a long list of useless autism related studies. Some shared a tentative hope it might be genuine, but many picked phrases out of the article as proof it was stupid. Most often, people were flinching at the word 'cure' as it appears in the article. Fair enough, I guess... cure is always one of those things guaranteed to get the autism arguments flaring.

Still, I have to say, to me, this is article feels like great news. Not so much the specifics of the study, but the acknowledgement that autism has a biological basis, and that a profile is being built. It means the mystery of 'why my kid' or 'what did we do' doesn't have to continue to deepen. Especially not for the Billys of the future. It's a hell of a crap shoot, and a nasty game we're playing with our collective future, in my opinion.

If there's a chance that this study is even half useful, it's a step in the right direction.

What's my idea of the right direction?

It's a place where, in the pursuit of medical understanding of autism, people living with autism who want to be heard, are genuinely heard. Where parents of children with autism are respected. Where the reason 'stuff just happens' isn't given and accepted when a parent raises an eyebrow as an autism diagnosis is delivered.

It's one of the toughest parts of this journey, in my opinion. The fact that the medical profession have so little to offer. More than that, they seem to want to diffuse any discussion on questions surrounding autism, if those questions come from the mouths of parents. If you start a sentence with the word 'why' in the company of a doctor, they seem to get a funny sheen across their top lip, and throw out a few words ending in istic, oma or itis... They either stop making eye contact with you (hell, we're used to that) or they start staring you down, playing eyeball chicken, until you stop talking and start shrugging along with them.

I don't know an autism parent who isn't a bit beaten around by their experiences with doctors. It makes me sad that I felt such affinity with Temple Grandin's mother (played beautifully by Julia Ormond in the HBO movie) when the doctor tried to avoid sharing the little he knew of autism in the 1960s. She steeled her eyes and reminded him she graduated from Harvard and could handle the information. He gave her so little, and even now 40 or so years on, we're not getting much more.

So now, as parents, many of us have become conditioned to roll our eyes and ignore the dudes behind the desks. We're like annoying teenagers, thinking we know so much more than our parents and teachers.

And so it makes sense, I guess that studies get published and people roll their eyes.

I really hope this is real news. I hope that all the agitating and arguing and sacrifice and scapegoating will come to something. For us, and for the families five years on and ten years on and twenty years on.

We're a privileged section of the community, who have taken a big deep breath as we've faced a nasty fork in the road. We're also growing in numbers, at an almost embarrassing rate. We didn't choose to be here, but we are here. In our numbers we've found support and friendship, but we're yet to achieve any real respect from the people with our children's individual and collective futures in their professional hands.

I hope that sometime soon we can stop rolling our eyes and exhale. Even a little.

Life is crazy, in a good way...

It's been a week! The highlight of which is Billy. Surprising, I know.

At the beginning of the week, while it rained buckets, we curled up inside and talked about the future. He told me he didn't want to be a Daddy (even though he thought he'd be a great Daddy), and he wasn't all that interested in having a girlfriend. 'Why not?', I asked. He said, 'Because girlfriends are quite noisy...' I guess when you are 6, girls are quite noisy. I couldn't really offer a counter argument, so I left it alone.

He did tell me that he loved me like a girlfriend. In fact he said, 'I love you more than anything!' (cue: heart melting) and finished off with '... and I'm very sorry that you feel you have to leave me everyday.' (cue: something much less pleasurable.)

Then he went back to school. I didn't think it would go well, after the 'leaving me' comment but... he was really, genuinely happy to be there. We arrive in the morning and he disappears to play. He chases and wrestles and asks questions. He's comfortable. More than comfortable, he's excited.

There are issues, socially. There always will be. But he's trying, he's learning, he's nowhere near frightened anymore. The lovely part is, he's dipping his toe into a whole lot of experiences I never thought he would contemplate - approaching totally new groups of kids, choosing to participate in sign-up style electives on free Fridays, sitting quietly in line with the group waiting for birthday cake at the end of the day (with 38 kids in the class, there's a LOT of birthday cake!!)

We went to the zoo as a group this week, in the pouring rain (fun in itself, really). The trip had been postponed once due to rain, and there was no way it was going to be put off again.

Billy was so excited (as they all were) and for the first time, armed himself with his own noise protection strategies. He brought his noisy hat (a man sized woolen beanie that can be pulled right down over his ears), he brought headphones (designed for garden work) and he made sure I had my iPhone (loaded with his music). In the past, this has been my job. This time, he took care of the planning and the implementation. Gotta love that one.

In the end he only needed the hat. He coped with 36 kids on a bus (why is it that kids freak out and squeal with added glee when they get to take a bus trip???). He coped with taking on the zoo, in the rain, having to accommodate the interests of five kids (for the non parents out there, the adrenaline level of taking responsibility for other people's children on school excursions is something akin to a mapless navigation through a totally new city at night on your first backpacking trip, complete with pressing decisions about eating and pooping). He coped with eating banana bread, made by the class the day before so they all had a snack (yes, he ate strange food, just because everyone else was... insanely novel behaviour).

This week he also experienced what I believe is his first real celebrity crush.

Both he-who-thinks-blogs-are-stupid and I work on a kids TV show called Hi-5. It's a pre-school show, and it's been a part of our working lives since Billy was a year old, so the studio and famous folk are nothing new to him. Two years ago, the cast changed, and one girl in particular has really caught his eye. I won't name her (Casey) but suffice to say, anything she says or does on screen is high-larious to Billy... even the stuff that's not meant to be funny. The sun shines out of this girl, in Billy's eyes (though in truth, she is such a luminous, natural performer, the actual sun almost does shine out of her). Yesterday, when he ran into her at the studio, and she spontaneously invited him over for a hug and a smooch... he blushed and sweated a little and melted into her arms. He was so speechless when I picked him up a little later, that I was worried he was sick.

He told me later he might like a girlfriend after all. I wonder if Casey will wait for him?

He's worth it.

There's always something to learn...

On a little Google journey this afternoon, I found this paper.

You can download it for free, as a pdf, if you want to read it too. But the introduction is almost enough to make me feel a little less frantic about where we are in our understanding of the 'a' word.

That academics are urging us to consider that Kanner's original classification in 1944, might need a fresh look... that can't be bad. That they are also open to examining the biological nature of autism is, in my mind, a step in a useful direction.

It makes me feel less washed away by the power of the 'science' of those with the most marketing power. It gives me faith that some people are getting funding to consider issues beyond the ones that retain either the medical status quo or the best situation for big business.

One of the conversations I like having the least, is the one that follows when someone says, 'Haven't they debunked the whole vaccine/autism thing?' I'm always struggling, backpedalling, trying not to alienate the other person with my 'crazy hippy' thinking, but also keen to change their minds.

I try to say, proof is relative, it all depends on your hypothesis. I try pointing out that there's a lot at stake in anyone in any position of responsibility accepting that vaccines might have damaging effects on anyone, least of all children. I try asking them how they would feel if their child changed overnight, lost skills, slowed in their development, stopped connecting with them. I try. I try. I try.

But I can't prove anything. Really, I've come to believe no-one can. I've come to believe that it's science and not the law that is an ass.

Not so much the science itself, but the people surrounding it.

I feel sorry for Andrew Wakefield, because I believe he's on the right track. And it seems a bit like he made a couple of fundementally stupid mistakes. So now, all the work he's done is lost. I can't see that as a good thing... especially not for us - the families swimming down the river of the early 21st century autism.

I wonder why the autism community isn't listened to. I wonder what people are frightened about. Are they afraid if some of the voices in the arguments about autism are correct, their children might be at risk too? It makes me sad that we, as a family, are something people might fear.

It makes me sadder though, to see the autism community fight amongst itself. Who does the 'right' therapies? Who is a fake? Who could be so stupid as to try... (name an intervention)? Why would that group say (name a statement about anything to do with autism)? Why does that person have the ear of that doctor/politician?

Even though those involved would disagree for sure, in my opinion, that in-fighting detracts from the challenges families living with autism face every day.  Even though I've got strong opinions about what's real for us, and what's worked for us, I don't want anyone to think I'm judging or degrading their decisions. Or, more to the point, I'd rather they felt OK about telling me to pull my head in and respect their choices.

It's raw for all of us right now, and the feeling that we're somewhere close to a crest of a freaky river wave is never far from many of our minds.

I hope that 20 years from now, we'll all be slapping our heads saying 'Dowp! It was THAT!' I hope we will know why it's being reported in a Queensland newspaper that the autism prevalence rates are doubling every five years, and that 2% of the state's school population has a diagnosis on the autism spectrum (not the 1% that's accepted as the new shocking prevalence rate).

And I really believe that the only way we will get there is to keep reading, keep asking, keep studying, keep trying to find out what the hell is causing so many kids to fall at fundamental life hurdles.

So I'll read the Swinburne papers, I'll read Wakefield's new book, I'll read the news on Autism Speaks and anything else that comes my way. I'll talk to my friends and I'll talk to my foes. I'll just keep trying.

I know I'm not anyone. I'm not in a position of power or influence. But if I'm supposed to be keeping my kid safe and healthy, then it is my job to understand as much as I can about the condition with which he is living.

There must be something to learn.

Is there ever a time when autism isn't a factor?

Today we went back to the love of Billy's life - Dr Victoria.

We went back because the cough part of the croup just won't go away, and I (as you know by now) have a brain that spins off into 'could this be very serious' land very easily.

Turns out, even though he is coughing so hard he's making himself vomit... he's just fine. No asthma, no chest infection, no nothing except the same old sensory issues we should be used to by now.

He feels his throat tickle, he coughs. That makes his throat tickle, which makes him cough. Which makes his throat feel odd, and so... you can fill in the rest (but if you are struggling, it generally ends in vomit or gagging at the very least).

I can live with the fact that it cost me $60 to find out he's got a viral cough that may go on for 4-6 weeks (are you kidding me?) I can live with the fact that there's no lurking pneumonia (very good news). But what I struggle with is the fact that he could possibly be coughing himself stupid for a month, and there's nothing really that we can do to calm it down.

He's come so far in regulating himself, understanding when he's about to be overwhelmed, withdrawing and re-grouping... and then little gems like this just pop in for fun.

There's no point in saying it, but it's just not fair. There are worse issues for sure, but some days, I think people with autism must be the hardiest of the bunch.

Billy has a pretty rough trot some days. It's not always life threatening (though he's had that too...) but it's not often a summery walk in the park either.

At least they come one at a time...

The good news is, we seem to have exited poo hell.

Thanks to people much more patient than I (Daddy and Dr Victoria, my new favourite person), Billy has re-negged on his statement of last week that 'Billys NEVER ever have to poo'.

I believe the compulsive repeating of Charlie and Lola episodes may have something to do with the wording of his mantra. I like Charlie and Lola. I think it's funny (for the most part), very positive (almost always) and a little bit left of centre (never a bad thing in my book). But since it seems to have been linked to Billy's decision to cease pooing, I'm not as much of a C&L fan as before.

A bit of a doctor chat, a crazy hi-fibre diet and a some privacy for a growing boy and it's 'Sayonara, pits of stinky hell!!!' No more sacrifices to the underwear gods... woo hoo!!

But we have entered croup purgatory.

Heavy breathing, wheezing, seal coughing, the whole kit and caboodle.

He's got prednisone and Nurofen and chips, and so far so good.

The beautiful part of today, was the doctor visit. We love Dr Victoria. She's respectful and positive and she treats Billy like a human being.

I seriously could have left the room today, as she and Billy had the appointment all covered by themselves. He sat in the chair closest to her and opened the conversation with 'Well, Victoria, I have a problem.' She listened to him, asked amazingly positive and well worded questions and got everything she needed back. She was even allowed a glimpse at the throat - a privilege saved for a very select few on this planet.

I'm proud of him, and even more, I am impressed with Dr Victoria. It restores my faith in the future when I meet people like her.

As we left the doctor, Billy stopped at the receptionist's desk. He said, 'Excuse me, ladies', to get their attention, and when they looked at him, he added, 'I'm keeping my germs right here in my mouth. Don't worry!'

No scripts, no prompts, just little boy chat.

We walked out the door having left smiles on the faces of a collection of women who see a lot of charming six year olds.

Did I mention how proud I am of my little barking seal?