Saturday, February 27, 2010

Things autism has taught me...

They occur to me all the time, and I think I should start writing them down.

1. A person is not the sum of what they are able to communicate to me

It strikes me all the time that Billy is so much more than what people see. We get so used to judging people by what they tell us or show us. And Billy probably shows the rest of the world around 10% of what he's got on any given day. Maybe even less. Some days he doesn't talk. Some days he doesn't even look. Some days he is a charming chatterbox. Some days he is Animal Planet stuck on repeat.

So, if were not familiar with autism, and you met him for the first time on a mute day? You'd probably think, 'Man, that kid's pretty limited/quiet/dumb/whatever'... without realising that he's got a huge amount more going on in there.

So, beyond ASD, I really should remember that. People are not just what I see them being, or hear them being, or am told they are.

2. Animals are not just good for postcards with captions

Non-verbal communicating entities are awesome. They take the pressure for understanding away. They open the doors for genuine reciprocated communication. They just don't use words, which is great, because words coupled with facial expressions, body movements and social context are really confusing.

If you don't believe me, have a chat to a dog... they truly don't care what you are saying, they're generally just happy to listen. It makes you feel good. It makes you relax.

3. The world is really loud

It is. It really is. We know this because sometimes it's just not possible to make Billy calm. Because... the world is too loud.

Here are some thing that are loud, that I never thought about:
- the kettle boiling first thing in the morning
- an owl hooting, especially if it's a recorded part of a soundtrack
- xylophones and chime bars in backing music
- crackling, scrunching plastic bags

All big surprises to me.

That's it for now. Like famous people dying, these things tend to come in threes.

Feel free to add your own observations in comments. We can build our understanding together!

Monday, February 22, 2010

Doctors... why do so many of you suck so bad?

Dear Doctor Who-Ever-You-Are,

I've gotta tell you something.

And I want you to listen, even though, it's all about the fact that you don't seem to want to listen.

Let me start by saying, I know I appear a little crazy. A little unwound around the edges. I've always been a bit like that, and now that I have this kid who has a bunch of challenges... I don't get around to winding up the edges as much as I used to.

But the words that come out of my mouth are true. I'm not making things up. I'm not inventing problems. I am genuinely concerned. I may be a little on the over-concerned side, but work with me.

I don't know a lot about autism. I guess I will never know enough about autism. But I've learned some stuff over the last six years. About autism, and about Billy.

1. He registers pain differently to the way I do (and maybe even to the way you do)
For a long time, he felt no pain at all. We thought he was 'tough' and even 'brave' when he fell over, bruised or cut himself and just got up and kept on moving. No... that was him under-registering pain. After lots of therapy, he now feels pain, but we can't be sure how much or how little. It's hard to quantify, when you've got nothing to compare it to, and when comparison is not one of the skills you were hardwired with.

So, statements like 'he doesn't look like he's in pain' don't really have much substantial, medical meaning.

2. I do not want your job, and have no interest in making you feel threatened.
But I will advocate for my child, and that may include pointing out some things that may not have occurred to you yet (see, I'm being charitable...). If it's OK for you to acknowledge that you are struggling to choose the right words to get Billy to do things - 'Can you point your foot, Billy?' 'Yes!' says Billy as he proudly points to his foot - then why is it not OK to acknowledge that someone who lives with a condition every day might have some information you may not have thought about... in relation to that condition. Especially when it has a direct influence on WHY WE ARE HERE!!!!!

How can you diagnose someone, when you are closing your eyes to the fact that the information you are seeking will have to come to you in a different way than usual.

3. It's not rocket science - be nice, and people will be nice back to you
I'm not sure anyone, even someone who is genuinely paranoid, appreciates being called paranoid. You, and all the doctors before you, who choose to ignore my son's needs because you do not think I have enough related degrees to have a genuine conversation with you, can bite me.

Seriously, bite me.

You can keep your stinking vaccines and your antibiotics and your insistence that we should toe the line for the 'greater good'. You can keep your opinions about the level of responsibility we exercise in parenting our child. You can keep your toxic, germ filled, dollar driven workplace to yourself.

It's like being trapped in an ugly, co-dependent relationship.

Thanks for nothing,


Thursday, February 18, 2010

It seems odd but...

Billy's having a mental health day today.

That's not the odd bit (I hope).

As I type right now, he's out on the trampoline by himself, just chilling. Not jumping, just chatting to himself, rolling about, playing with a small toy tiger.

That's not the odd bit either.

The odd bit is that I'm not freaking out that he's out there by himself. He doesn't even have his wing commander (Scruffy) out there at the moment. Just himself. And it's OK.

A year or so ago, I went to see Tony Attwood talk, and one of the things that really stuck in my head was this... he said, for every hour of social time (school, shopping, park, home chat) kids like Billy (on the spectrum) require an equal hour of self directed time - solo time.

It's taken over a year to get comfortable with that reality. It seems wrong, to let a six year old alone. It takes everything I've got to stop myself from getting in his face and doing... stuff. I've spent so long dragging him out of himself, it feels risky to let him sink back in.

But I know now, that this is not about regression. This is about rejuvenation.

We had to go through the Early Intervention stuff to understand what was happening, to build strategies, to get a framework, to help him find the skills to bust through the 'veil' that forced him to sift dirt through his fingers instead of play with toys.

But that bridge is built now. And no amount of fear will break it down. I'm sure a bunch of other things could, but fear won't.

He grows when he is calm.

In other states, he can experience stuff, he can take stuff in, he can learn things, he can function.

But when he is calm, he can learn.

Monday, February 15, 2010

In Depth with Temple Grandin

This weekend, Billy and I were driving home and a noisy motor bike drove past us.

His hands flew up to his ears while the bike went past, and he said, 'My ears hurt because I'm autistic.'

I was surprised. Pleasantly, because while we haven't really sat him down and had 'the talk', we've never stopped talking about autism around him. And we've always included him in discussions about his own dilemmas.

I asked him what he thought autistic means, and he said, 'My brain is special, and it makes my ears hurt.'

Fair enough.

Flash forward to this morning, and I was watching an interview with Temple Grandin on C-Span. It was posted on, one of my favourite ASD related websites.

Billy came and sat with me for a minute.

He watched some of the interview, and turned to me and said, 'Is she autistic too?' I said, 'Yes'. He said, 'Cool.'

Click on the link below, if you want to see Temple Grandin in action. Watching her makes me feel peaceful.

Doesn't happen all that often...

Sunday, February 14, 2010

It really is a Rollercoaster...

I wonder, at times like these, whether there will be a day when we rest, emotionally. When we are not making faces because we are flying down the face of something scary, or creeping up towards something really exciting.

Week three of school has begun, and for Billy it's a tough ask. All the same old stuff - noisy, fast, overwhelming. This morning it was like the colour drained out of his face, from the time we arrived, to the time I left him. It's like a graphic depiction of how the 'real world' exhausts him.

And yet we also see great joy.

On Friday, I spent the day at the school. I hung about, while Billy went about his kid stuff. It was a special day at the school. A film crew were there talking to the kids and the teachers about kids, adults, life, conflict resolution. I was proud as anything to see how well the school stood up to the scrutiny a TV camera can offer.

And while I was there, I saw plenty of times that Billy completely engaged with his surroundings - both human and environmental.

There are some kids who work so hard to engage him, on his level. Beautiful human spirits who see that he loves gifts and not long conversations. Or the ones who know that a string of repetitive questions are more likely to get answers. And then there are the kids who have realised that a gesture or a sign accompanying their words will help them get through.

And Billy does cautiously engage with those kids. He also LOVES to watch kids wrestling. And at Billy's school there's a lot of wrestling. There are rules, and checks and balances. There are rarely injuries. So Billy's in heaven. He will also join in the wrestling sometimes, though he sometimes struggles to know how to make it stop.

He has come up with a game called 'Count to Ten, zoom!' which basically means kids run away while he counts to ten or calls 'zoom'. Then he chases them. Huge amounts of fun for all concerned.

He also loves watching his peers master physical skills. After they leave the equipment, he has a go, and the pride on his face when he gets something is worth bottling.

But... the buts still remain. At hippy school... in an atmosphere of pure child directed learning... Kids are fast. Kids are noisy. Kids talk a lot of crap. Kids are genius. Kids are intense. Kids are creative. Kids are demanding. Kids are confusing. Kids are needy. Kids are unpredictable.

Can you imaging a crazier combination - a passive autistic kid and NT peers who are like the 'normal' community multiplied by a bazillion. In a really good way...

It still feels like I am leaving him in a pack of wolves.

I guess the good part is, that Billy loves wolves... as long as he can just watch them.

Saturday, February 6, 2010

My Boy...

He-Who-Thinks-Blogs-Are-Stupid made this truly beautiful thing. Though he hates the fact that this one is not the original 60000000mb HD version.

For those of you in the ASD family, play the macabre game of 'see when the autism kicks in' as you watch.

I shouldn't play either. But I do.

Friday, February 5, 2010

Let it Be...

At the risk of sounding like a typing monkey... 'It was the best of times, it was the worst of times...'

Hippy school is brilliant. Not just for Billy, for everyone. It's the school we all truly wish we had been to when we were kids. People are interested in each other. It is child-centred. Hell, it's child-run. No principal, just a cooperative structure fully understood and run by the children and the adults together. Each giving the other guidance when required.

And with all of that comes two apparent things - respect and freedom. By giving and earning respect, the members of the school community earn freedom. Behaviour, both 'good' and 'bad' has consequences, and so everyone lives in a fluid, thinking atmosphere.

And that buys Billy a lot. Certainly a whole lot more than a mainstream school could. He does not have to wrestle with the need to sit still at a desk, for example. He completes his work, and is free to move around. Any of you with children with autism or ADHD will know how much mental energy is spent by all concerned on that one element of school life alone.

Is he allowed to fidget? Yes. Can he have processing time? Yes. Is he allowed to disengage when he's stressed? Absolutely.

Is he being treated any differently than any of the other kids? No.

He's treated with understanding. He's taken for who he is. And sure, who he is is quite different to many of his peers. But who they are is quite different to him... and quite different to each other. They are all unique.

And no, I don't mean 'unique' as in 'special' and all the other euphemisms for disabled. They are all unique in the truest sense of the word - one of a kind. As we all are.

But, all this floaty loveliness doesn't change the fact that school is loud. School is fast. School is full of the need to decode language. School is demanding. School is exhausting. And the one thing that compensates for all of these things for most kids - the fact that they can play with their friends, well... it's not compensation for Billy. It's becoming more attractive every day, but it's really, really hard for him.


I believe I would have sought this for my child, even if he hadn't turned out to be autistic. But what seems to work for Billy is... 'let it be', let him be... just allow him to feel safe and secure and not constantly wrong.

Do not punish him for behaviour he cannot control, yet at the same time help him understand what achievable behaviour is expected of him.

Hippy school allows that to happen. And the results are unbelievably positive.

He is cognitively matching his peers. He is becoming flexible socially with his peers. He is able to manipulate expressive language in a manner not unlike his peers. His receptive language is 100% age appropriate.

We are all fortunate that Billy chooses flight, over fight. So he does not have many challenging or unpredictable behaviours. He has exuberant involvement, active observation, mute fear and shut down. But before hippy school, in a child filled environment he had tears, panic and shut down. So we're winning.

It's obviously a life long journey but at the end of this part (ie. week one of grade one) I would like to take the opportunity to pat us on the back. It's still hard, but it's right.

And if you are reading this because you too have a gentle, quiet child with autism, them please consider our example... take it easy, keep things slow, listen to The Beatles... Let it Be.

It may be tempting to try and 'teach' your child to hide their autism while they are in the real world. It may even seem like it's working. But... if your gut is screaming that what you are doing is counterintuitive... then listen to your gut.

It knows when to ask for food, and it probably knows a lot about how you could make decisions for your child.

I'm going out on a limb, but I believe our child will thank us in the long run.