A quick analogy...

I spend a lot of time trying to come up with anecdotal 'frames of reference' for the things I see in Billy that are clearly not in me... the 'autistic things' for want of a better phrase.

Yesterday, we took a return trip to Wizzy World, the scene of Billy's amazing breakthrough. It was truly the sort of place that I had just wiped off our radar - noisy, full of kids, intense and truly the sort of place that makes me sweat with fear.

Well, since his friend's birthday party he's been begging to go back, and yesterday (despite the fact that it's mid school holidays) was the day I caved. I did the usual autism mother algorithm:

time of day + possibility of huge numbers of kids - hours left in the day x what kind of a day is he having = just go and see what happens.

And so we went.

This time, we did not need our Wizzy World Angel. Billy led the way. This was his gig now. He was Wizzy World. Bizarrely (and wonderfully) he introduced himself to stranger (as in 'don't know them' not 'odder than him') kids. He played with kids (quietly, passively... but I'm taking it). He had a blast.

But one thing eluded him. The big slide.

He really wanted to go down one of the big slides (and when I say 'big' I'm talking about the sort of g forces that make little kids look like fighter pilots as they slide down).

So, right at the end of the session, when all the kids were putting their shoes on and freebasing restorative sugar, I agreed to climb up to the top of the structure with Billy, and slide down the big slide. I wasn't thinking about what my almost 42 year old face was going to do in all that wind resistance, or the kind of muscle usage I was going to require to get up there. I probably should have, but... in the light of what I discovered, I'm glad I didn't.

We made our way up squishy rock walls, around squishy rollers, through jungles of elastic, over perspex panels and freaky rope bridges... until we reached this strange part of the tower. The last stretch before the top of the temporary face-lift slide. It was vertical. It had little shelves at various levels. It needed me to enter, then twist and turn like a snake to get to the top (which, incidentally, I could not see).

Billy had already gone through, and was calling me. I had to get through it, because his only way down was on the big slide. And there was no way he was doing it alone.

I've never had a real panic attack, but yesterday, I believe I came close. I couldn't think straight. I couldn't see how to get from here to there. My brain was going all Dr Seuss, trying to bend itself in ways my body was thinking were not even remotely possible. But Billy was calling.

Hormones fought with Thinking and Hormones kicked butt - despite the fact that Thinking had made no plans at all.

I have no idea how I made it through but I did. And as I did, I had that Richard Dreyfus feeling again... I sat on the top of the slide, gripped Billy in a bear hug on my lap, and set off down the slide thinking 'This is important...'

Between the muscle twitching and the relief that we could finally go home, I couldn't put my finger on why it was important, until I talked it through with my friend this morning.

I think what I felt yesterday, when faced with something that I could understand, but not deconstruct was what Billy feels a lot.

• I know what's expected (get to the freaking top, no matter what).
• I can plan the first step (jam my middle aged body into a child sized hole).
• Beyond that, I have no idea (get stuck, need to be extracted by a helicopter, feature on news that night)

I needed to be able to process clearly, plan logically, have full capacity of all my muscle based bodily functions... and let me tell you there was no hope of any of those things. It took a leap of faith, powered by mummy hormones. Thank Christ for those mummy hormones.

Thank you Billy for having the vision and the energy to make it through Wizzy World. And for making me a mummy so I had the hormones to un-wedge myself from the primary coloured corners of hell.

The parenting dream...

These blog entries are like word photographs... little grabs of time and experience that most likely make my life seem incredibly floaty and fun.

It is fun. Definitely. And it has its floaty moments. Definitely. But there have been some hideous, horrible, frustrating teary times as well. They are fewer and further between, for sure, as time goes on. I'm so very glad about that.

Because for a long time it didn't seem like it would ever feel good.

When I was a little girl (don't you hate it when sentences start like that...? Don't worry, you're not about to get in trouble) my sisters and I used to talk about what we would be doing in the year 2000. It seemed so far away, but we'd add up the years, work out our ages and chat about our imagined careers, husbands and children.

Career-wise, I'd had a seminal experience as a five year old in the theatre in Ireland. I was taken to a production of the Wizard of Oz, and as soon as the lights went down, I knew I wanted a piece of it. I was talkative but not really a performer (read, lots of intentions but not much actual talent) but I liked words a lot. I was a precocious reader (three years old by family legend) and liked to write even at five, so my career was set. Bizarrely, I actually managed to pull that one off.

So, it was just a matter of a husband and children.

My relationship history is hardly worth writing about - essentially, a series of misguided attempts followed by a major stroke of luck. As time went on, I became more and more worried that the child I'd dreamed up wouldn't materialise. But at 35, along came Billy.

And not long after it began, my much imagined parenting journey took a swerve to the left.

Now, people who know me would know that there's nothing odd about odd to me. I've never quite fit in to the mainstream. Not different enough to be way out, but not on that straight and narrow Barbie, ballet and team sports road either.

I love that I found a lovely, understanding, funny man to make a family with. I love that I found a job that paid the bills (mostly) and was creative and interesting too. So, having a child who was destined to be a bit odd shouldn't have seemed like such a big deal.

But it was.

The realisation hit me like a ton of bricks. It hurt. It was deeply frightening. It was a threat like I'd never felt before. I was 'queen of the little kids', the favoured aunty, the babysitter of choice... this was supposed to be my moment in the sun.

I had taken on pregnancy like a member of the special forces. Full of rules and discipline and choosing to do 'the right thing'. I didn't eat anything I wasn't supposed to eat - soft ice cream, sushi, salami, salad bar salad. I extended the ban to caffeine - no coke, coffee or chocolate. I drank litres of water, ate tons of fish (I know... I lived on the coast and the doctors said it was the right thing to do... gack!) and generally looked after myself.

So this shouldn't have happened, right?

But it did.

Over the past six years, there have been moments where I thought I couldn't breathe. Sometimes it was because of the unfairness of it all. Other times it was in response to Billy's struggle to master something that other kids just breezed through. Mostly, though it was because I didn't want to accept what was going on.

I'd dreamed of this for so many years. I'd worked so hard to make it happen right. And I'd failed to make the dream happen. Let's face it, I'd flat out failed. I'd fooled myself into thinking I could succeed but, meh...

But... and it's a big but (funny that). Once we finally got Billy off to school, and I got a bit of thinking space, my perspective changed.

I realised I'd learned quite a bit on the journey so far. There's a lifetime of learning, of course, but it's incredible how much you can pick up when you have to... and with autism, you really have to. So, my brain was well exercised.

I also realised that the career that often failed to bring the dollars, brought a lot of flexibility. I could work from home, I could bring a whole lot of new perspective to my work practice (lord knows lots of autistic kids have a passionate relationship with kids television).

Finally, I can confidently confirm that, in my experience, what doesn't kill you makes you stronger. It also makes you much more efficient, increases your time management skills and means you care so much less about things and people that annoy you.

I dream about the future now, like I did when I was a child. But now it's Billy's future I wonder about. And it's not my sisters I share my dreams with, because they have kids of their own to speculate about. Now, I share my thoughts and fears with a new bunch of women - autism mothers. They're just like sisters, really. We giggle about mistakes, we challenge each other's ideas, we sob on each other's shoulders, we tell stories from the trenches that no-one else would understand...

With their support, a bit of space to think and a real reason to succeed... I've reached a point where my parenting dream is becoming a reality.

Watch, next week, some other giant hurdle will appear in front of me on the road less travelled. Throw me a giant squid wielding a light sabre. See if I care.

Actually, I might. That's the stuff of bad dreams...

There's so much to learn...

Today, I was thinking about osmosis. As you do.

I was thinking about the day I learned about osmosis. In a science class at high school. I remember the phrase 'differentially permeable membrane'... how particles need to be able to pass back and forth across the membrane for osmosis to occur. I have no idea how (or why)  that idea appealed so much way back in the 80s, but it did.

If you have a second, I'll link it back to something relevant to Billy, autism and my own strangeness.

Teaching is one of the toughest jobs around, in my book. Good teachers need to be able to understand the modus operandi of each one of their students, and match the external curriculum requirements to each little being. Add a difference like autism to the mix, and you've got a majorly complex challenge on your teacher-ly hands.

Half way through the equivalent of Year One, we are butting up against the complexity of that challenge. I can give up the fantasy of my son being school captain, a popular kid or a soccer player, I will not let this bright boy slide into the ranks of the intellectual under-achievers.

So, in my usual 'fix it' kind of way, I've started seriously attacking Billy's cognitive skills. I have no doubt in the whole wide world he can learn anything he wants to. The challenges of where and how he learns these things, though, is becoming deeply apparent.

There are many reasons why school is unlikely to be the 'where' and 'the same way as the other kids' is rapidly losing favour as the 'how'. Here are a few of those reasons of the top of my head.

• There are too many other children at school. Children make noise. Noise exhausts Billy. Learning is tough when you are knackered.
• Peer modeling is only just becoming valid for Billy, at almost 7. He models things like 'it's OK to wrestle boys to the ground' and 'eating boogers is interesting to try once'. He does not yet have the ability to model ways to attack a maths problem. Unless I take the time to video his peers at maths time, I doubt he will ever have the opportunity to meaningfully mimic their learning styles.
• Every single day, I learn something new about autism. Doctors and academics have spent their entire careers studying autism. It is a complex neuro-developmental condition of as yet indeterminate cause and with impacts and implications unknown. School staff are way down that information chain. 

There are many, many positives to Billy attending school, and even more to him attending the school he's at. Socially, he's kicking goals all over the place. Personally, he's (slowly) developing great independence.

But he's not going to learn traditional cognitive skills by osmosis.

That membrane between him and the information is not even remotely differentially permeable. You just have to spend some time being spoken at by your average Aspie to understand that the information is often moving in one direction only.

It is conditionally permeable though. There are ways to get through, you just have to know how. Here's a list of what I've learned thus far.

• He needs to be as relaxed and non-threatened as possible. The adrenaline needs to be at bay, the fight/flight mechanism should be as rested as possible.
• He needs assistance to maintain a posture that promotes cognitive processing. This does not happen naturally. Yawning, slumping and leaning come naturally. Another ASD parent put me on to this therapeutic cushion, which will be going to school with him next term.
• If all else fails, a video camera is invaluable. Video a successful learning experience, and watch it back. Repeat 100 times.(thankfully, something Billy likes to do). Lesson learned. 

I'm sure there will be more. I am resigned to the fact that I will be driving this journey way more than I had hoped, and so there will have to be more.

Perhaps I will pick some up by osmosis. Can I dare to dream his teachers might as well?

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.