Wednesday, April 27, 2011

That feeling in your gut...

Today, while waiting in the wings of a news studio here in Sydney, about to do an interview to promote the book (that one, over there on the right), I got an SMS asking me to confirm an appointment for Billy with a well recommended paediatric gastroenterologist.

I confirmed the appointment for next week, and stifled a tiny, excited feeling in my own gut that maybe finally we might get some help with Billy's health.

I should contextualise by saying that I am a bit of a catastrophiser. As I type this, I hear the stifled 'You think?' of people who know me in real life. I worry. A lot. I actually plan worrying time. I have worrying management strategies. I spend way too much time worrying whether my worrying is a problem.

The whole deal with worrying, in my mind, is actually some bizarre trade-off with reality. The idea being, if I worry a lot then the chances of the object of my worry becoming a reality are somehow lessened. I have no idea where this dysfunctional thinking has come from, but I cling to it, like a careless recreational fisherman on his upturned boat.

The reality, living with a child like Billy, is so often the complete opposite, that I find myself wanting to stab holes in my upturned boat. I stop myself, purely because I am worried about sharks.

It's not healthy, not productive and generally the sort of thing that cigarettes and beer used to blot out in my youth.

Here is why I have a gnawing feeling in my gut.

When Billy was very young (20 months or so), we were referred to a paediatrician on my insistence. The paediatrician - a woman, told me I should take anti-depressants and send my child to long-day care. I asked for a new referral.

The new paed, on first clapping eyes on Billy, said, 'Oh yes. very autistic. Now, take gluten and dairy out of his diet and spend $1500 on primers, enhancers and supplements.' I asked him whether he should run a diagnostic tool on Billy to actually (perhaps) diagnose autism, and he replied, 'Not necessary. He's clearly on the spectrum.'

This experience turned me so far against any kind of biomedical advice, I shunned everything. Screw him, I thought, I'm making grilled cheese sandwiches for every meal. Fish Oil... bah! Vitamin b12... nonsense. That Children with Starving Brains book... total crap.

Five years on, I'm not proud of my petty protest. I was wrong. My son has a mighty, mighty life altering problem in his gut. He cannot control his bowel well. He has silent reflux.  He vomits for no reason, frequently. He has breath that could shock a sailor with its 'colour'. His tongue looks like he's been drinking coffee (he hasn't... he's seven, and already doesn't sleep all that well).

I'm not wanting to imitate Cher on the aircraft carrier (who could look that good in mesh and lycra??), but seriously, if I could turn back time, I would have listened to that stupid doctor. He handled to moment badly, and I handled that moment like a duck trying to play piano... but he was right.

How do I know?

In a fit of pique after a round of random vomits and chronic no-poops, we cut dairy out of Billy's diet, and replaced it with a calcium supplement and an ASD multi-vitamin. The consequence? A drastic reduction in random vomits and a much easier poo experience. It's not gone, but it's a billion times easier.

Fish Oil, makes for improved cognition and much less anxiety. B12 makes for a brighter boy generally, with far less lower gut pain. Motion Potion stimulates and bulks bowel action (minus the gluten and dairy) and makes life slightly more manageable lower gut wise.

As Billy's Mum, I desperately want reliable guidance. I want people who know WTH they are talking about to advise me. I want to feel safe and supervised as we attack what is clearly a medical problem.

I have not found that yet. In fact, I am fumbling about in the dark. I want tests. I want evidence. I want information, and ultimately healing. I'm aware we might be waiting for a long time for these things, but I'll be buggered if I let it be like this forever.

Today, a dear friend shared this article with me. It's about Dr Andrew Wakefield, a man I refuse to condemn. I won't write him off, because I think he asked (and continues to ask) 'why'? Anyone asking 'why' and 'how' and 'where' and 'how often' and 'in what circumstances' and 'in reaction to what'... I support these people. I commit, here and now, to giving these people more time than I gave the creepy doctor who tried to drain my credit card.

I, and so many others, need to know 'why?' Not just for our kids, but for future kids. Though, I'd definitely take some clarity for my own kid right now, if there's any lurking about.

So, I'm hanging on the GI doctor as a starting point. After that, who knows?

This burden is too heavy. Not so much in emotion, but in responsibility. I am not a doctor, I'm a writer, for heaven's sake. I do not feel comfortable making big decisions about my child's medical health without medical supervision. I trust and love my autism buddies, but I am rational enough to understand that their decisions are based on their child. Not mine. I learn from their journey, but I cannot blindly mimic it. It would not be appropriate for my kid to wear some other child's glasses on the basis that they seemed to have a similar kind of short-sightedness.

This autism rollercoaster swings from denial, to cynicism, to fervent belief, to fear, to discovery and back again. Some days, I need to get off. Because I really really hate vomit. Mine, Billy's, anyone's...

I know for sure that a mother's gut instinct is to be trusted. I really hope the gut doctor provides us with more than instinct, and a cookie cutter approach to gut troubles.

Or, I too, may be forced to toss my cookies, in his general direction.

Friday, April 22, 2011

Thanks autism. Really...

I've been trying to avoid using this blog to flog the book (see right), because it just seems crass.

But this week, I had the privilege of spending time with some of the contributors, who live in the same city as me. We were gathered for an interview with one of Sydney's metro newspapers - The Daily Telegraph. While our kids, again, played together without incident of any kind (there's a whole thesis in why that works so well), we spoke to an extraordinary journalist about our lives, and how they got jammed into the pages of a book.

My point today (if I can come to it quickly) is all about the good stuff that I never, ever anticipated when the 'a' word was first thrown about in my presence.

Here goes.

1. The quality of people on this road.
It's a chicken or egg question, really. Does autism generally hit cool people, or does autism rip your skin off thus making you cool? I seriously have never met such funny, open hearted, focussed, motivated, generous, evolved, flexible, accepting, child centred people in my life. Mothers, fathers, grandparents... almost without exception, people I would quite happily chuck my coat in a muddy puddle for. I feel safe among these people. I feel understood. I feel brave. Most of all, I feel thankful.

2. The joy of the tiny step.
While we all chatted to the extraordinary journalist this week, each one of us had a moment or two where we were lifted by something we saw in our own or each other's children. The spontaneous 'thank you', the constant 'excuse me', the poo in the right place at the right time, the care and compassion of the older kids, the instant companionship the little ones provided for each other... all things that we've hoped for, battled for, wished for - just popping up and being celebrated by all in earshot.

3. The acceptance of quirky.
We've all had those moments where we've thought, 'Ooops, went too far... showed too much of my odd side.' We all have, right? The fun of an autistic gathering is seeing how little anyone cares about revealing your inner quirk. Things that, among NT kids, would elicit giggles (in a nice group) or taunts (in the rest of the world) barely rate a mention. The flapping arms, things spoken in American or English accents (thank you Pokemon and Charlie and Lola), things repeated and repeated and repeated, moments where a child would literally walk away mid-sentence for some processing time... no-one cared, no-one thought it was odd, no-one asked for a reason why, no-one raised a voice or an eyebrow.

4. The power of more than one.
It's no surprise to me I ended up in autism world. I've never been the centre of the social circle. I've always wondered what people who are in that circle know that I don't. This week, and on many other occasions lately, I find myself standing in a much more appealing, oddly shaped circle, listening to people I respect (OK, trying not to talk so much and often failing), feeling proud to be there.

I think the experience of putting this book together has been an extraordinary gift. I don't have all the answers, most of the time I'm struggling to come up with a single cogent one. But... I am immensely heartened by the fact that I am among a population of people who live with, observe, read, manage autism spectrum disorders every day.

We don't have reliable, repeatable data, we have experience. We don't write research papers, we write about our experience. We don't have clinical trials in our houses, we trial experience.

The book brings 60 of those sets of experience together, from across the globe and across socio economics. By standing the stories together, I hope we can see a picture emerging. An anecdotal, and still valid picture of how we came to be here, and how we perceive and handle the journey.

We do not all agree, all the time. We do not have the same story, by any stretch. But we do all share a hope that one day, we will understand much much more about why so many people are in the same position as us.

As much as I love and appreciate the world I am in, and adore my son, and see what incredible skills and perceptions autistic people bring to society at large... I want change. If not for us, then for children to come. If not for us, then for parents of the future. If I can do anything to help that happen, I will move heaven and earth to do it.

Books, songs, blogs... whatever. It's not for everyone, I know, but if I don't use my powers for good, the lapsed catholic in me wonders what evil will emerge.

In the meantime, I'm working on getting poo in the right place at the right time, and for the record, it's not my poo. Yet.

Sunday, April 17, 2011

Moving against the tide...

There was a time in this autism life, where I would read everything I could get my eyes near, trying to see whether I recognised Billy in the words.

I played an odd game of roulette, ruling autism in or out (well, he doesn't line things up... or man, he does do that weird thing with his eyes when he's walking beside a fence...) as I read. I'd sigh with relief when I saw that other families were under more stress than we were, or I'd jealously read stories of kids who flew under the radar and didn't need to disclose anything resembling their diagnosis. My reading habits are, in all honesty, where the rollercoaster metaphor came from. In a flutter of the fingers, I'd go from 'Wheeeee' to 'Whooooaaaaa'.

With the passage of time, and the colourful experiences that it has brought, I've learned that autism isn't an either/or. It's unique. It's not so much unpredictable as a-predictable.

So, I thought it was worth a post about how Billy surprises us with his very unautistic resilience and flexibility.

We've just moved house. Moving house is hateful, confronting, disgusting, exhausting and unpleasant. And that's on the good days. There will, for sure, be some cathartic purposeful re-birth sometime soon. In the meantime, food tastes bad, my clothes either smell or are AWOL, and the dog can get under the fence.

We have opted for location (suburb we like, good schools with track record of ASD-friendliness, close to friends from previous school, awesome dog parks for hairy son who is covered in mud after discovering a feisty rainy day friend). Location also includes walking distance to some of Billy's favourite shops, which has already become a fab motivator (eat this salad and you can get a new gazelle at the toy shop style).

What has amazed us about the change of location is that it clarifies, challenges and isolates the specifics of Billy's style of autism.

The challenges: he takes change like a pro. No problem in the world. As long as Mummy and Daddy are here, all is good. He was a bit worried that his toys had to stay at the old house, but once they came, he was good. He has a playroom/sunroom here, and a big backyard and a secret bathroom in a cupboard (strange, idiosyncratic rental property... more of that later). After all that 2am reading, I am constantly amazed at Billy's ability to weather change. He travels well, he tries new things, he is brave and curious.

The isolation: we are no longer at the top of a cul-de-sac here. I totally get how, in real-estate terms, the top of a cul-de-sac is good. But in autism terms, the cul-de-sac concentrates kid noise, traffic turning noise and an unfortunate unsocialised dog directly opposite who barked consistently when anyone (yes, anyone) came close to his house. Billy's life has been ruled by that dog, and it's only now we understand how. In this new house, Billy is comfortable alone at the other end of the house. In the old house, we used to hear regular calls, 'Where are you, Daddy?' and 'Mummy, I need you!' Billy was, more often than not, in a state of noise-induced panic. Now, he is comfortably engaged with his toys, and we can sit (like grown ups, with a glass of something grown up) in another room and... chat. It's taken a day or so to realise that Billy is relaxing without the constant threat of barking erupting uncontrollably from somewhere in his eyeline.

The clarification related to this move is much more sobering.

Today we met the new neighbours - a beautiful family with a girl slightly older than Billy and twin boys slightly younger than Billy. The boys were very keen, in their enthusiastic little boy way, to meet Billy. We convinced him to say hello. He came outside slowly, stood as far away as he could from the boys, twisted his lovely body into a pretzel shape, said, 'I'm here!' and disappeared inside. The twins, understandably, were a little disconcerted. It reminds us that our little man is an unusual member of the league of children. It's a confronting reminder given that this is the neighbourhood where Billy must make a re-entry into formal schooling. These are his peers. Their questioning stares help us prepare for our re-entry into the 'real world' - the place where, no matter how atypical it is, autism will define Billy.

In this month of autism awareness, I am aware how lucky we are. I see how many gifts our boy has been given. I see how much he trusts and loves us. I see how he is able to articulate his feelings and thoughts. I know he is happy.

As we step from our autism cave (old house), where we found therapy and diet and supplements and visuals, it feels a little like a new day.

The autism didn't go away. He didn't grow out of it. He hasn't been healed or recovered. And it's OK. It's really OK.

We have a charming boy. We have a loving boy. We have a funny boy. We have a deeply intelligent boy. We have a life, together, that's pointed (vaguely) towards the future.

And we have a serious damp problem in our temporary rental home. For a woman with deep control issues, and a learned fear of chemicals of any kind... it's not good.

But for a boy with less stress in his life, everything's gold. Wrapped in cardboard and packing tape until we unpack it again, but gold nonetheless.

Tuesday, April 12, 2011

Stinking germs...

All through Billy's life, one thing has been consistent.

If we put him in the middle of a group of kids, he gets sick. Like clockwork.

In the world-meet-autism realm where I live, what the mother thinks is generally somewhere between Lindsay Lohan and a right-wing shock jock on the credibility scale. So my statement about Billy's illness is usually met with a smirk and a raised eyebrow. But trust me, I'm not a doctor, it's true.

One of the great benefits of our Distance Ed adventure is that Billy's contact with kids is sporadic instead of constant. We do parks, and the zoo and the shops. We visit people one on one. He gets social experiences that are manageable, and definitely less confronting than the abyss style immersion social learning that school brought. He loses on the growing relationships, for sure. He misses his friends (I love writing that, not because I like making my son sad, but because he actually has a growing conception of sustaining peer relationships). 

Every so often, we go to an indoor play centre, and Billy gets to have a good old fashioned bounce around. It's tough, noise wise, but the sensory benefit of the inflatables somehow allows him to take on the challenge. He LOVES these places now, though he is generally a sweaty shell of a kid when he leaves. I see a lot of sweaty shells of kids pushing their way out the door of the play centre with lollipops hanging out of their mouths in a desperate attempt to replace blood glucose.

Last Friday, we went to a play centre. Billy made a couple of friends, and they all hung out for almost three hours. Occasionally, Billy tried to stalk one of them (at the moment, he is often a predator and his often unsuspecting friends are prey... in the David Attenborough style, as opposed to the Arnold Schwarzenegger ouvre). The kids weren't thrilled with being 'brought down', nor were they keen on being 'throttled', but with a few Mummy interventions (threats of computer-i-cide and You-Tube-ectomy), we got through it.

As I was smugly sipping lattes and chatting to a lovely other mother, I said (out loud, I believe) 'Ten bucks, we'll pay for this in three days time...' No, I wasn't planning on waiting to pay for the coffee... I was thinking Billy would get sick.

Then I put myself through this crazy game. I think, 'No... he won't. It's all in your head. Those people who smirk and give you patronising eyes and tell you this illness issue is all in your head are not smug bastards after all, they are right. Billy will not get sick.'

Then I go through a couple of blissful days where I forget the whole conversation inside my head. Well, in the case of the last few days, not so blissfully, because we are moving house on Friday and the weekend was spent packing boxes full of forgotten crap.

Then, yesterday, Billy becomes the sneezing boy. I think maybe it's a bit pollen-y here in Sydney, until I remember Billy doesn't really have allergies. No, it's not pollen or dust or dog hair, it's boogies. Nasty, stuffy, hot headed boogies. Billy has a cold, on the first day of the school holidays. Nice.

No matter how old, no matter how well fed, no matter how much we work on 'exposure'... this pattern has been consistent right through Billy's life. Him, in a room full of kids for more than twenty minutes or so, equals boogies or chuck or much much worse.

We've had his Ig levels checked, and apart from a slight IgA definiency (more of this in a few weeks when we finally visit the worlds-greatest-GI-doctor, and no, I'm not building him up at all....) On the surface, his immune system is functioning. Despite the fact that he's got a patient summary that looks like one of the Sopranos' charge sheets (one of the less clever ones), we have no answers.

This year, his paediatrician agreed we should investigate properly, as it's impacted severely on his school attendance. So we're finally on the road we would rather have been on four years ago. 

It brings me to another consistency in the lives of autistic children, in Australia, at least. Or maybe it's just Billy... you decide. We've had more than our fair share of hospital admissions, many many ER visits, way too many trips to the GP. In Billy's life, we have never once not passed the Medicare Safety Net (a neat little government level that reduces the cost of medical intervention once you've spent a certain amount per year). We go to the doctors a lot. 

When we go to the doctors, ER, hospital, they generally do their job well and bring Billy back to health and then send us on our way. They exchange paperwork with each other, but they don't speak to each other. So no-one ever says, 'Hey, this kid is sick a lot, what's going on?'

No-one except us.

Who drives the medical investigation of autism? Who orders the tests? Who drives the exploration? The GP? The Paediatrician? The ER doctors? The specialists? No-one os throwing their hands up in the air. We have a few solid DAN/biomed doctors here, but you need to mortgage your house to maintain the process, and their approach is decidedly cookie cutter.

It doesn't seem right, that I - a mother not trained in medicine, is the one who is supposed to tell the doctors what to do. And, for what it's worth, the doctors aren't thrilled about someone who writes jolly songs for little kids making medical suggestions. So who is stuck in the middle of all of this?

Billy. Sick again, after being in a room with a bunch of kids for too long. Sick again, for no good reason. Sick again, when we are about to move house.


I hope the removalists do not notice the boogies on the boxes.

Wednesday, April 6, 2011

I'm at Hopeful Parents...

Click through and have a look, and a read.

If you need a little hope...

Or a little smile.

Tuesday, April 5, 2011

Can I just say...

Individual, one on one teaching really works for my little ASDian.

I know it's not rocket science. I'm not going to win any prizes for my insight... but my kid definitely is.

We are about to finish our first term of Distance Education. For four hours every school day, Billy and I take over the kitchen table, coffee (me) and water (him) in hand, and we hit the books. It's old fashioned learning. The units are written by very clever educators for sure, but there's nothing innovative/post-modern/howard gardiner about this stuff. It's old school homeschool.

We do handwriting, and spelling. We do a unit of maths a week, sometimes two. We back that up with Mathletics, which we both truly love. Well, love is strong, but we get a lot out of it, and it opens the pressure valve on the constant handwriting pressure. We do news, and reading aloud. We do all the touchy feely-move about-y stuff too. Bit of PE, bit of the arts, bit of Human Society and the Environment. We've started a science unit, too. Twice a week, we meet with a tutor, and twice a week we go on a kid filled adventure.

It's a LOT of work. A lot. We need more than four hours a day to do it, and often spread things out over the weekend. Any more than four hours in a day and we're both a bit wrung out. Any less and we fall behind really quickly.

It's a LOT of resources. We have a 100 litre box on wheels full of pencils and art supplies and my great loves - the Post it notes. We need a lot of paper clips. We need to munch a lot of staples out of things and re-staple them a different way. There's a lot of photocopying. There's a lot of scheduling and organising (neither are my strong suit). We sharpen pencils a lot (bizarre that in the 30 odd years between my primary school years and Billy's, I don't believe I ever sharpened a pencil.) We use a lot of paper and above all, we use a lot of erasers. It sounds so American to me, to use the word 'eraser', but if I say we use a lot of rubbers, my American friends will report me to the police.

For all the resources and all the work, though, there is a LOT of payoff.

Billy's handwriting, in 10 weeks (actually 6 weeks of actual contact, but that's another story) has gone from completely unintelligible squiggles (think the patterns on a scribbly gum or the way your Mum plays Pictionary) to absolutely understandable. His little hands still shake while he writes, and it stresses the life out of his processing skills, but if he writes it, you can read it. We've even got to the point where his grip is 'three-pointed' enough that he doesn't need the the writing claw every time.

Billy's maths skills have improved out of sight. He still finds the abstract, non-concrete stuff hard to get his head around, but I'm rational enough to see that these are life-long challenges. His mind is moving quicker, his basic number facts are solidifying, his enjoyment levels are rising. Mine, not so much, but I have an awesome poker face and a large coffee mug to hide behind.

My sweet boy has inherited a deep love of language, and for that I thank whoever wishes to line up for my offerings (I often have chocolate in case any random deities are looking for a treat in a wooden bowl). He loves funny spelling, co-incidental rhymings, words that sound like other words (if I say homophones, I'm surely flirting with snickers from the cheap seats). He loves to write the way he thinks (in vaguely linked, very detailed, generally animal related sentences). His understanding of writing forms, and his desire to communicate in a written form have blossomed over this term... he's even voluntarily illustrating his writing, which, if I said was unprecedented, I would not be doing the miraculousness of the event justice.

And I hear you. I know that just about any kid would benefit from a teacher on tap. I get that. I really do.

But when the benefit takes a kid from being ambivalent, absent and incapable, learning wise, to at least able to give it a fair crack...? You've got to call it a win. And you've got to continue for a least a little while more. Right? Well, unfortunately for Billy, it can't go on this way.

Billy is enrolled in Distance Education on medical grounds, and that has nothing to do with the autism diagnosis. It is related to the impact his health has on his ability to attend school. The experts agree there's something, but they have yet to build consensus on what.

It's becoming clearer by the day that our beautiful boy is not going to 'get better' in the he-will-probably-just-seem-quirky autistic kind of way. He has come a huge way, don't get me wrong, and he will continue to grow/develop/thrive for absolutely sure. He has abilities and gifts for which we are endlessly endlessly grateful.

But his version of autism clearly runs deep, and has its claws dug into his body. It has clogged up his digestive system. It has ulcerated his oesophagus. It has worn down his baby teeth. It has cut connections in his nervous system. It interrupts his brain with fear signals and processing breaks that he cannot be distracted from easily. It makes his legs jig, his arms spasm and his hands shake. It makes him roll his head and his eyes repetitively. It makes him repeat the same words and sounds, without conscious control. It stops him from being able to experience the cries of a baby or the barking of his beloved dog without uncontrollable tears. It is not mild. It is not easy. It is not get-over-able. Not simply, and not quickly.

So, while we spend our mornings learning together at home, we spend our afternoons at GI doctors and neurologists and immunologists and psychologists - hopefully learning a bunch of other stuff.

As time passes, we must also find Billy a new school, because as soon as we know what's making him so sick, we must re-enrol him in 'the system' or homeschool without the supervision of the Department of Education.  This, in itself, makes the desire to see Billy's learning skills improve just that little bit stronger. Setting him loose in the noisy, germ-filled, bell-filled world of assemblies and desks and uniforms... makes my heart squeeze just a bit harder.

Of course, it could be the coffee doing that.

For now, we're sucking as many miracles as we can out of this experience.

In homeschool, there are no bullies (OK, occasionally I'm a little less tolerant than I could be, but seriously, it's hard to smile through the 10th request to finish the word or type a number). In homeschool, we can control the noise (no bells here, unless you count the oven timer telling us lunch is ready). In homeschool, there's only one person for Billy to have to understand (and though I know I'm a little convoluted some days, I am great at hugs and am often bearing chocolate).

And in homeschool, we have holidays at the end of this week. Can you hear the giant release of breath? Watch out, it smells like coffee.

Saturday, April 2, 2011

The thing about April 2...

I don't know about you, but when I was young, I wasn't thinking I'd be walking around in public weeping because I made eye contact with other people.

On Friday night, here in Sydney, I did just that.

It was a spontaneous leaky eye moment. You know the ones - they happen at weddings, when babies are born (to other people... doing it yourself brings on a whole different kind of tears), in the supermarket when you see a single old man buying frozen apple pies (maybe it's just me... but that makes me sad).

Walking down Circular Quay at sunset, holding hands with my tiny man in blue, my eyes just wouldn't stay dry. Billy was excited about seeing the Opera House, and even more excited by the gigantic flock of bats circling overhead. We were headed to see the Opera House sails being lit up blue for autism awareness, along with other families just like us.

Every time I locked eyes with another mother clasping the hands of her child dressed in blue. Tears. Every time I saw a little one with a skippy irregular walk. Tears. Every time I heard a Pokemon induced American accent coming out of an Aussie kid. Tears.

Now, those of you with one of 'those' brains might just be thinking, hang on... Friday night...? That's not April 2. Friday night was April 1. What's she doing... some kind of autism flavoured April Fool's joke?

To be honest, I ask myself the same question. I too, am wondering why Australia chose to celebrate World Autism Awareness Day a day earlier than the rest of the world. We weren't going to miss the chance to see our awesome Opera House lit up blue, in honour of Billy and so very many people like him. But it definitely felt a bit odd doing it on a different date to our international community.

I think this is really important. And I now I may be a bit odd in this (surprise!), it's just a day, isn't it? But work with me for a second.

I think solidarity is crucial in this autism fight. I think it is a fight, too. 

We all have our issues in our own lives (and you kind readers share the load on many of our issues just by listening to my random ravings). We all worry about funding, and services and schooling and intervention and organisational respect and recognition. These are very important things in our day to day lives, as individuals and as organisations defined (touched/ruled) by autism.

But on World Autism Awareness Day, those are not the important issues to me. On World Autism Awareness Day, we stand together, identifying what makes us the same - autism. While we stand together, we show that we are proud, we are concerned, we are determined to fight. We show that we are aware of our rising numbers because we are standing among them. We show that we care about each other. We show we will not apologise for our difference, no matter how socially inconvenient we are - individually or as a group (anyone who knows autism knows we didn't have a chance in hell of covering up the oddness on Friday night).

So, even though I am sure there was some completely credible administrative reason why the Sydney Opera House was lit up blue a day early, I do not like it. I find it disrespectful to our community. Why is it OK to say to autistic people, 'Surely the day before is good enough for your celebration...?' 

The UN mandated day to highlight autism awareness is 2 April. It is a brilliant thing, in my mind, that the international autism community has that day. We should use it. Together. 

We have World Autism Awareness Month to individualise and institutionalise our awareness raising and celebration. A whole month to make the symbology a more immediate reality. On one day, we stand together as an ever growing world community of people and let the autism be. With timezones, it stretches out to a day and a half of April 2-ness.  Or, close to three days, if you add the Australian choice to move to April 1... dilute the message, much?

Having said all of that, the compromise position made me cry. 

It was beautiful to meet families like ours, in public and not have to worry about who was doing odd stuff. Billy (being a cheetah) stalked well dressed couples on their way to the theatre (ostriches... nice creative touch, I thought). We also had Sonic the Hedgehog, Pokemon and the odd Harry Potter character jumping around doing their thing. We heard lots of misplaced pronouns, and saw lots of impulsive charging about.

Most of all, we stood in a small sea of blue clothing, bathed in blue light from the sails of the Sydney Opera House and smiled proudly.

It felt good to know we are not alone. There is safety in numbers.

Which is handy, because there were cheetahs about.