Thank you woman at Wizzy World...

Yesterday, Billy went to a birthday party. Could have been a disaster. Wasn't.

It was at an indoor play centre called Wizzy World. Should have been a disaster. Wasn't.

The party was for a boy who has gone out of his seven year old way to be friends with Billy. He has invented games Billy can understand. He creates activities that the two of them can complete together. He tells Billy (and me) every school day that he loves him and misses him when he's not around.

So Billy really wanted to be there for his friend's party. It's only the second peer party of his life, but he was clear on what it was going to be, and he wanted to be there.

Wizzy World is as it sounds. Wizzy. Colourful. Noisy as Sideshow Alley on People's Day.

We warned Billy, showed him photos, talked about noise levels, offered to bring the headphones or the noisy hat. He refused, saying he'd be fine. So he and Daddy set off to the party with mid-range hopes.

When they arrived, Billy was hit with a wall of sound. And not the sort of sound he can handle (self generated, predictable, even toned). This was the noise of a couple of hundred screaming, sugared up, party going children.

Not surprisingly, the hands went up to the ears, and the unsure dance began. There may even have been a bit of flapping, as Billy made it clear (without words) he wasn't comfortable in this space. His body wanted to leave, but his brain could see his friends (or maybe it was the other way around). In any case, he-who-thinks-blogs-are-stupid had some negotiating to do.

After a bit of to-ing and fro-ing, and the odd rash promise of McDonalds on the way home, Billy agreed to play. But only with Daddy by his side. Could adults climb on the brightly coloured plastic tower nightmares, pondered He-who-thinks-blogs-are-stupid. As he was thinking, a woman came up to him and tapped him out the shoulder.

'It's OK,' she said, 'You can climb with him if you want to. I do it all the time. My son is autistic too.'

He-who-thinks-blogs-are-stupid looked at her, and she said 'I'm sorry. I hope I haven't offended you.'

But he wasn't offended at all. (Phew!) He was grateful, and together he and Billy spent the first 30 minutes of the party climbing together.

To the nice woman at Wizzy World, I say thank you. I am grateful too. You have made me realise some really important things.

1. That women can be really courageous, and nice in the face of really confronting things. It would have been so easy to not reach out. Who cares if a kid goes home early from a party? But she knew a little more about how hard it was for both of them. She could read the situation, and she took a risk. That risk meant that my son, my partner, my family can walk a little taller today.

2. That people who don't live with a challenge like autism either can't or won't 'get it' on a level that makes it possible to build a bridge between strangers (like you did, Wizzy World woman).

And that's OK, because people have a lot going on themselves. It's becoming clearer as time goes on that most perfectly empathetic, generous folk still struggle to get a grip on the special needs game. There's no point of contact. Unless you have faced  that soul crushing fear in your child, until you see your little one consumed by what looks like irrational worries, until you have experienced kiddie fight or flight on a cellular level... you can't be expected to 'get it'. It looks like so many other (slightly more familiar) behaviours, but it isn't. You can help in other ways, but I see now how it's not easy to help when you don't know what the problem is in the first place.

3. I should have your courage more often. I am going to try from now on. Thank you for reminding me that I can.

4. Finally, despite the autism... primary coloured squishy rooms full of slides are undeniably attractive to children. What the hell is that about? Some primal human instinct? Maybe the womb looks like Wizzy World?

This morning when Billy woke up on Day 1 of the holidays, the first thing he asked was, 'Can we go to Wizzy World again?'

I soooooo wish I could come up with a reason to say no.

Just like the other kids...

It's a game most parents play (I hope, otherwise I am truly insane and my life is crapper than even I thought). But as with most things these days, the rules of our game are a bit different.

The game is 'how does my kid compare to the other kids?'

Sometimes, in autism (NT) mother world, usually when one of us has a particularly bad day, the photos come out.

We share photos of our kids, especially when they were newborns. We talk about the time before the 'a' word, before we were counting words and checking waves and points for true reciprocity. We ponder the time when we clicked away with the camera, thinking our little one was just like all the other kids.

It's like ripping band-aids off or eating an entire family block of chocolate in one sitting. You don't want to do it, but you need to do it and it feels good, bad and painful on both physical and emotional levels.

I think, seriously, it's a kind of therapy we have inadvertently invented for each other. We laugh, we cry, we rage at the fates and then... we're done for a while. We climb down from the peak of crazy mummy mountain and re-join the herd.

This week, I believe I hit a turning point in myself. I think I've reached some kind of plateau, and I'm going to have to sit up here for a while. Because if I venture down, I'm likely to hurt someone.

I'd love to go into detail here and wallow in the reality of it. But I don't want to alienate people, and more than that, I really think wallowing could drown me completely.

It's about school. It's about Billy. It's about him being different (not in that good inclusive fluffy bunny kind of way we like to use that word these days).

It's about equality, and how it's based totally on the perceptions of the people with all their capacities intact, and so people with disabilities will always come up somewhere short of 'equal'.

It's about the fact that autism is a subtle companion, in so many ways.

Humour me. I promise, it will make sense (in an obscure kind of way).

It's so easy to make completely incorrect readings of an autistic child's behaviour. I'll give a little example.

BEHAVIOUR:             'He doesn't follow instructions.' 
INTERPRETATIONS: 'He's being stubborn'
                                       'He's not interested'
                                       'He's bored'
                                       'He's aggressive/non-compliant'
                                      'blah, blah, blah'.

First, let me be clear, I'm not talking specifically about a specific Billy-related incident at the moment. But if I was, I would like someone to understand that he doesn't follow directions because the instructions are impossible to follow.  Walk with me while I explain...

1. He doesn't follow directions because the instructions are impossible to follow.
2. The instructions are impossible to follow because they are too long.
3. They are too long because they contain a lot of information that must be understood in a sequence.
4. He got the first piece of information, maybe some of the second, but you were still talking.
5. He tried to get the third, but you were already finished.
6. He tried to remember the first one again.
7. Then everybody started moving and doing stuff and he had no idea why or what.
8. So, he wandered in the direction of the quietest possible spot.
9. And was distracted by a puddle or a pile of sand.
10. So he sifted the sand or stepped in the water, much simpler than that long string of instructions.

Following me? Keep up, while I come up with some solutions.

1. Think before you speak.
2. Break up instructions into doable actions - step by step.
3. Write step by step instructions in the same place every time.
4. Make a smaller version of those steps (laminated paper and white board pens are good)
5. Give that small set of instructions to him.
6. Talk it through.
7. Make sure he understands.
8. Make sure he has all the resources he needs.
9. Stay with him if you can, but if you can't...
10. Tell him you'll be back to check in.
11. Make sure he has begun the task before you leave.
12. Come back to check in.
13. Mark off each step as it has been completed.
14. Direct him to the next step.
15. Celebrate each step.
16. Have a party on completion.

Sounds a little intense, huh? Well, welcome to our lives.

Our lives that we share with a bright, funny, charming, engaged little boy who would still be sifting sand into puddles of water if we hadn't learned how his mind works and changed our behaviour.

We didn't ask to be here. We didn't make it happen. We are not trying to make your life hell by asking you to understand.

We are trying to direct our son towards the future he deserves.

Just like all the other kids.

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. 

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.

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?

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??

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.