Wednesday, June 30, 2010

Coughs have consequences...

So our logic is starting to be turned back on us. It's thrilling, but a little confronting at the same time.

Today, as we were driving to school, I had to cough.

It may seem strange to some people, but coughing is not encouraged in this house. At least, not by Billy. He is very articulate about the fact that a cough is like being hit on the inside of the head to him. It's the pinnacle of horrible in his life - a surprise, loud, sudden, generally high pitched. Sneezes are also not loved. Sudden (pretentious, unusual) laughs are frowned on as well.

Hyperacusis is at the centre of Billy's struggles with the 'real world'. He feels sound, as well as hears it at a vastly amplified volume. It's a rare sound that's pleasurable, but if it can be consciously managed with a volume control and/or things like headphones, hats or hoods... it's less feared. The management of the hyperacusis has a behavioural component, but the reality of it is very much biological/neurological. It's real. It's realer than real.

For Billy, it influences just about every aspect of his life.

His motor skills (compromised vestibular awareness and management make balance and proprioception a real challenge... this is what makes the ball catching and bike pedaling an ongoing PITA).

His learning (try focussing on what one person is saying, when all the noise in the room from rustling leaves outside the window to kids laughing beside you is coming in at a massively amplified level).

His social skills (it's hard to get a handle on a new 'friend' when you have no idea if they are going to squeal, scream or introduce an even more unpredictable baby sibling).

I've picked one simple example in each of those areas, but I could go on for days. I have such admiration for this boy. He takes steps forward every day of his life, despite the fact that each one of those steps is the equivalent of a mountain climb for one of his NT peers.

It's not just about the immediate impact of the sound either. A nasty auditory encounter can impact on the next hours, days or years.

Consider the fact that Billy will not get any closer to an indoor swimming pool than the doorway. He will watch his peers swim, but after indoor swimming lessons at 10 months old, he learned that indoor swimming pools were auditory hell. He says he's never going in to one again, even when he's a big man.  Fair enough.

Similarly, he has learned that certain people and creatures are not reliable companions on the basis of their noise output. I can't name the people for fear of destroying ongoing relationships, but roosters are never to be trusted.

This morning, pre-car cough, I coughed at home. Billy was just waking up. He woke in tears, asking to see his Dad, and that I made myself scarce. Even me, the spare brain... the back up, is not immune from rejection when it comes to sound. Lucky he-who-thinks-blogs-are-stupid was still home with a big warm hug at the ready.

So, when I coughed in the car, his sensory fuel tank was already half full. He was on the alert. From the back seat, his voice rang out loud and clear.

'Mummy, coughs have consequences! I need you to stop making that noise.'

I tried to explain that people have to cough sometimes. I have needs too, blah, blah, blah. Billy's response?

'Please drink water instead, Mummy. That will help your cough, and my ears won't hurt.'

Not a bad solution, really.

Did I mention I think he's pretty impressive?

And in a quick post-script, thank you to hippy school for introducing Billy and us to the skills of conflict resolution that allow him to understand and frame all of our needs so very beautifully. 

Sunday, June 27, 2010

I can't prove any of these claims...

There are a bunch of things that happen in the life of an autistic person that don't make any sense.

Now there's an understatement.

These are events, habits, tendencies that parents report to each other, but learned very quickly NOT to mention them to doctors or therapists. Unless you enjoy people looking at you like you've grown a second head.

Billy and I have both been sick for over a week. Nasty cold, maybe a flu (though I have this stupid thing that says people who say they have the flu just have a cold and are being overly dramatic). Whatever it is, it's hideous. Jumping with random abandon from noses to threats to chests to heads. Sounds attractive, doesn't it?

In the throes of the odd illness/recovery/illness again experience, though, the 'spooky sickness improvement thing' has happened again. Maybe it's because he's been home, free of social pressures. Maybe it's because he's had time to revel in the stuff he loves. But whatever the reason, through a rivulet of green boogies, has come huge strides forward in language and general resilience.

He's having longer and longer conversations. They make more sense. He's spinning concepts around in his head. He's understanding more subtext and inference.

What is that about?

I'm not the only parents who notices this. Sometimes it comes after a fever. Sometimes after an illness without fever. But it happens often. It's confusing because many of us have learned to be frightened of illness, after nasty regressions in toddlerhood.

Related to this phenomenon is the fact that many of us have noticed that our kids run temperatures that are significantly higher or significantly lower than the normal range. Billy's on the low side, and can be fighting a bug that is so tough he's hospitalised without ever running a fever. Again, what's going on with that?

On a similar vein, parents say their ASD kid is the healthiest of all their siblings and peers. They never get sick, ever. When all the other kids are falling, their autistic one is a trouper. I've read somewhere that this is a sign of a hyper-functioning immune system, as potentially concerning as an under-functioning one. Clearly, Billy is not one of those kids...

Seriously, what do these things mean? I know it's all anecdotal, but... the fact that people could be bothered reporting them to each other must mean something. There's absolutely no reason for us to randomly make this stuff up.

I've said before I hope that we are on the thin end of the autism learning wedge right now. I'm in the camp that says some autism (at the very least) is an auto-immune condition. There just seems to be compelling evidence in our lives that neurological inflammation, gut inflammation, immune irregularity and the stuff we call autism are tied very tightly together.

But... who am I to try to make sense of all of this?

I'm not a medical professional, not a therapist, just an involved observer. Although... the amount I think about this stuff might just qualify me to grow that second head after all.

Thursday, June 24, 2010

Things autism has taught me 2...

It's been a while, and I seem to remember promising myself I'd do this every so often.

It's been a tough few days, only because both Billy and I are sick with a nasty cold and have been homebound all week. Billy illness is ALWAYS preceded with a day when I find myself feeling angry with him, because he gets snotty and snarky. And Billy is the least snotty and snarky person on the planet. Seriously, think Dalai Lama and double it. So when he suddenly morphs into a member of the Gossip Girl cast, we know the germs are winning. Then, the next day, the germs have generally also launched an attack of one of the tall folk as well.

So, from my mucous filled brain,  here's my new list of the things autism has taught me.

1. Chaos is lurking around every corner
But there's no point fearing it, 'cos you sure as hell cannot control it. Just now, I was on the phone. Kids came door knocking to raise funds for their sports team, the dog went nuts, Billy burst into tears. It's hard to know which decision to make first. Consequently, I make no decisions at all and end up a complete mess. Then as quickly as it started, it's over. I read a similar story involving doorbell, poop in the bath, naked slippery toddlers and the like on a friend's FB status the other day.  But it's going to happen. Maybe I should call it Kanner's Law - autistic determinism. If one bad thing happens, at least three more will pile on top making a chain of meltdown triggers.

2. Bad isn't necessarily bad
Yesterday, Billy came to a meeting with me. He's sick, I'm sick. He was quietly spinning in an office chair to amuse himself, and made himself throw up. Bizarrely, being the vomit hater I am, I managed to catch most of an entire vomit in my hands. There's so much to say about this incident but the reality is that I was first thrilled that he got dizzy enough to vomit. He's struggled to register vestibular change all his life and now... he's registering it. In my hands... and just a little on the office chair that is now living outside for a few days.

3. You will not win an argument, so end them as quickly as you can
Was it Dr Phil who said, don't get into confrontations with your kids, but if you do, make sure you win? Well, clearly he hasn't met a verbal autistic child. There are so may slippery slopes for the grown up in this one. My favourite is the 'Yes, it is' response. Thrown at you after statements like, 'No, we can't go to McDonalds again because it's not open', or 'You can't have that expensive toy, it's not your birthday'. It's not just being cheeky (though there's a bit of that in there for sure). It's more that after a short brief period of lucidity before the spiral thinking kicks in, what your autistic child wants is actually 100% irrefutably, completely possible. The bigger point of the argument is lost in the smaller part of logic that says 'we are talking about it, so it is'. I feel another law coming on... Hans' Law: I speak, therefore I am right.

And let's face it, most of us waited a loooong time to have the privilege of being harangued illogically. So many of us are still waiting, that it truly seems churlish to complain. Instead, we just give up, grip the steering wheel (so many of these arguments happen in the car.. maybe it's the lack of eye contact?) and helpfully say non-committal things like, 'OK' and 'We'll talk about it later.' And when I say helpful, I mean opening the gates to loopy conversational hell.

4. You will never complete your Thomas collection (Pokemon collection, Transformers collection, Dinosaur collection, Star Wars collection... you get the idea)
There's always something new to buy, find on ebay, look up on Amazon, covet in toy shops and in other kids' toy boxes. Don't worry. Your child will always find another level of purchase, another evolution of thing, another genre. Even if you run out of toys or items in that line, you will be amazed how another passionate love will emerge. It feels like you are always close to an ending, but fear not, the love will go on and on. I call this one Celine's Law.

5. YouTube is proof the autistic population is growing
When Billy was five, we made a movie set to a Thomas song and uploaded it to You Tube. To date, over 400, 000 people have watched it. And Billy's Thomas movies are by no means the most popular. Some of the others have over a million hits. Thomas movies. Kids with cameras crashing their trains into other trains, and blocks and dogs. A million hits and counting. Then there's the mash up. Thomas vision cut to the audio from a Simpson's episode, or a scene from The Lion King or Piglet's Big Movie... Who thinks of these things? Who has the time an the knowledge and the passion to match to completely separate televisual concepts perfectly? Autistic people, and their friends, that's who. Seriously... it's visual. It's repetitive. It's familiar. It's screen based. It's meticulous. It's funny. It's content driven and infinite in its depth and reach. It is the autistic mind laid out on the internet, which is pretty autistic itself.

I do not mean, in any way, to sound disrespectful or flippant here. I seriously think it's awesome. I don't think it's scary or pathetic.  And I don't think kids should be outside playing with their friends and not doing this stuff. I think it's cool and worthy. And just because I've said it, it must be true.

Oh dear... I've been hanging out with Billy a little too much this week, haven't I?

Saturday, June 19, 2010

A shifting scale...

It feels like we've been in autism world for a while now, long enough to see what amounts to a generation move through Early Intervention and into big kid world. Not surprisingly, there's a whole new cohort bringing up the rear.

This morning I was reading a 'new' mothers' questions about the whole issue of High vs Low Functioning Autism, and what the qualifiers really mean in a very small child. Billy's diagnosis is High Functioning Autism, and it always seemed like a namby-pamby way to reassure the adults that the future wasn't all doom and gloom.

It got me thinking about how on the journey to acceptance in the autism game, reality shifts constantly. And it's taken me this long to understand that part of it is human nature, and the other part is related to the fact that we still know sooooo little about autism that everyone's guessing.

When Billy was a baby, it was the 'is he or isn't he?' question. We could see the hyperacusis, we watched him shy away from big crowds, but at the same time we were blessed with a funny, chatty, outgoing little dancing man, so it seemed insane to consider him autistic.

In the early stages of our journey, we were reading lists of autistic behaviours as though they were pre-determined attributes, not biological reactions to different wiring/chemical imbalance (whatever you want to call the differences in an autistic make-up). So, I'd look at my boy and think, 'but he's not remote' or 'he doesn't want to be alone' thinking that those tendencies were what made an autistic person. I could see he was capable of all the things a little boy should be doing, and clearly autistic kids were not capable... ergo, he's surely not autistic.

It was like bargaining with the intellectual devil in an odd sort of way. Or the emotional devil... though maybe they're the same little fellas, just choosing different shoulders to sit on. Sorry, diverted off the path for a second there. Back to understanding and acceptance.

At a little under two, we got the first kick in the guts, also known as 'the first time a medical professional agreed with my concerns that maybe a toddler shouldn't turn and run when another toddler enters their field of vision'. I fought those medical professionals (thus setting up a long term pattern of behaviour for myself) because again, though I was the one flagging an issue, I truly didn't believe it was autism.

My nephew had been diagnosed by this time, and though I knew enough to understand that all autistic kids were different, I just didn't see a connection between the functioning of the two boys. It seemed like a different thing. I was sure Billy's issue was hearing related - not a hearing loss, but a hearing gain. Too much hearing, I reasoned was just as possible as too little.

Billy's reaction to the MMR (developing measles, ceasing language development) made me fear we were moving into more autistic territory, but it still seemed as though he was experiencing an illness - a transitory slow down as he recovered from vaccine induced measles (or rubella, they never bothered to test).

My bargaining now was about illness. It seemed like he was a bit more like what people would think of as autistic (by now completely averse to the company of children, not keen on adults other than close family, sweaty, unable to play functionally for any length of time, not developing speech) but... this was because, for the first time in his short life, he'd been sick. Properly sick.

Then we hit pre-school age. Two or so years into Early Intervention, he was talking, playing, laughing and the only real concern was his dogged determination to avoid his peers. The hyperacusis was a little more manageable, but again, it seemed logical that he would stay away from noisy, unpredictable little kids.  He was obviously different to a lot of the kids, but hey, lots of pre-schoolers are a little eccentric. In our lives, he was a joy. Happy, funny, engaged... maybe a little more rigid than your average 3-4 year old, but again, he's ours... we get him, we understand what he wants, so it didn't seem like much of an issue to us. He HATED pre-school for good reasons.

We had a diagnosis at this point (PDD-NOS), and used it very much as a way to contextualise behaviour for other people. I still thought he might defy the experts, though, because I knew that the behaviours had a logical root. I thought (because it's really the impression the professionals and books give you) that he was unusual in autism terms. He wasn't mysteriously trapped in himself, he was overwhelmed by the world.

Transverse Myelitis hit him like a ton of bricks not long before his 4th birthday. In the parallel universe of hospital life, his differences crunched hard into us all. It was like skating on crocodiles. Every slip meant some horrible assault on his being. It was a challenge to protect him from the sensory onslaught of a children's neurology ward, and then the sensory onslaught of the TM hit him... we were all leaping around like the characters in Peter Pan, trying to get higher than the crocodiles' jaws.

Even though he recovered (amazing in itself) it threw us off the acceptance track because we were well and truly back in medical condition territory. Maybe it's not autism, maybe it's some odd neurological/metabolic something or other. After all, he's not typically autistic...

I threw up the day he received his official diagnosis: Autistic Disorder - High Functioning. I'm not sure whether it was anger (he's NOT typically autistic) or the sting of humiliation (crap, I was wrong... me??) or resistance (you don't know him like we do...) that made me throw up, but it sucked (the vomit and the diagnosis). I haven't read the report since, but I guess I should.

Fast forward to now, a year and a half into primary school, and the acceptance game has a whole new set of rules.

It struck me for the first time this week, when Billy went on a rowdy, independent boy's playdate, that it's not really about my acceptance anymore... it's all in Billy's hands. It's about him having the skills to say, 'I don't like that noise' or 'please leave me alone for a while'. It's about him understanding and accepting his capacities as a human being.

The fact that he's autistic is neither here nor there to him. He is just living, responding as the stimulus hits. His behaviour is his own. It is genuine, not dysfunctional. It may be different, but to him, that barely rates a mention. He is truly (as they tried to tell us we should be at drama school in my youth) 'in the moment'.

Just like he was when he was a baby, and a pre-schooler, and recovering in the hospital.

I genuinely wish I was more like him. Acceptance shouldn't be transitory, it should be unconditional.

Hear that, little fellas on my shoulders??

Wednesday, June 16, 2010

It's all about the money...

The more confident we get about the possibilities for Billy, and really they are all about the freedom hippy school provides, the more the flipside also rears its ugly head.

It's all about money.

Any kind of change, any improvement, any significant opportunity is costly. Financially costly. I don't even want to start on the other costs (emotional, family stability, time... should I go on, or have I depressed you enough?)

I think about hippy school, and what it means to us. A place where Billy can learn and grow and understand himself, free of judgement and threats to his safety. OK, maybe not free of them, but definitely in an environment where those judgements and threats are dealt with openly, honestly and with humanistic consequences.

The downside. It costs. We are very fortunate to have family who help us pay the fees. If they didn't... we'd be homeschooling. And I know Billy would not be challenging his full potential if we do that.

I think about my friends with children severely impaired with autistic challenges. As much as I'm not a fan of ABA for us, these are children whose lives could be enhanced with intensive behavioural intervention. But they can't access ABA services.

Because it costs. So kids grow older lacking language, and cognition and life skills. Not reaching the potential so clearly within them.

And I think about Through My Eyes. It will pass 60 000 hits on YouTube soon. There are plans to release in the UK, and in the USA and it's all lovely and wonderful. and truly inspiring to have gained the reach we have.

But it costs. A lot of money. And we don't have that money. If we did we'd be paying our own kid's school fees. So even the freaking song can't reach it's potential.

I don't mean to be doing an 'oh poor me...', though I'm well aware how whiny I'm sounding right now.

We are fortunate beyond belief, in so many ways, and I am completely grateful for that. I have support in this game. Family, he-who-thinks-blogs-are-stupid, and from complete strangers. Those strangers - the parents who share this journey, give me incredible support that goes beyond anything money could buy. These people have shared their time, and experience and wisdom to guide me and others through the darkest of dark times.

I've made friends I'll have for life. I know that, for sure. And it adds to the confidence I have for Billy because I know that he'll grow up as a part of a virtual generation, linked across the world by their parents, their challenges and the internet.

The generosity of these people is what keeps us moving forward.

But I really do wish that the other kind of generosity wasn't necessary too. I wish that money wasn't an issue. So kids who need therapy could have it. So kids who need tailored, sensitive, inclusive education could have it. So people could share information and inspiration without needing to have the connections and salary of a Hollywood celebrity.

Whine-fest over. Resume normal transmission.

Sunday, June 13, 2010

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.

Wednesday, June 9, 2010

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.

Sunday, June 6, 2010

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.

Saturday, June 5, 2010

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.