Reasons to be cheerful...

There's been a bunch of stuff going on around here that has made me sad. So today, I thought I'd focus on the positive.

Positive Things About Living With Autism by Valerie (42 and a half years old)

1. Grocery shopping is relatively simple.
There are no real mysteries for me when I shop. I know what I need to buy to keep the boy fed. I know what I need to try to push the boundaries a bit. I know what to stand in front of and go, 'What child eats chickpeas anyway???' (that would be the chickpeas). I read the Sunday papers and I see the recipes for 'Kids Lunchbox Lovelies' featuring avocado, tuna, coriander and lentil wraps and I think... thanks for that.

Let's be clear here. Autism eating, for the uninitiated, is a curious mix of the sensory, the familiar, the thank-god-it's-nutritious and the very well advertised. As far as I can work it out, it's about what Billy believes will not kill him. It's not a matter of us sitting around as parents and thinking, 'Phew, all he wants is McDonald's Nuggets, that makes things easy!' Not by a long shot. Our cupboards, like most autism family cupboards, are full of 'ba-bow' foods. Things we tried on the basis that they were nutritious, other kids ate them and they were related by colour/texture/smell to something our child actually eats. Our compost is like a Whole Foods catalogue.

All is not lost, though. Because one of the brilliant things about autism is just when you have given up, your child will shock the life out of you by picking up that coriander and spatchcock sushi roll and eat it. Looking at you all the time like they were born with a sprig of coriander in their tiny little hand. Also, maturity brings the helpful concept of bribery and corruption. In our house, we are now able to say, 'Eat two pieces of pear, and you can play The Simpson's Game. No pear. No Simpsons.' Thankfully his receptive language wins over his gag reflex. And sometimes, you can sneak more fruit in using advanced mathematics (hang on... if I take one piece of pear away from two pieces of pear, how many are left? One. Well, you agreed to eat two, so here's two. Bang! Eat these two, then The Simpsons. Confused? Me too. But he ate more than two pieces of pear.)

A message of hope? You may have child like my wonderful Aspie nephew who is a sensory eater. His calming food of choice? Crunchy raw vegies. Seriously.

2. Entertainment is not a complex prospect
Let me qualify this by saying, it's not that I believe autistic children are not capable of involving themselves with complex forms of entertainment. Far from it. The positive here is that your child is likely to know exactly what he/she wants to do. Autism makes it slightly easier for the parents, because whatever the love, it's likely to be a deep and specific love.

For us, the first love was Thomas. The Tank Engine, not the saint or Edison. It didn't take long to work out that no amount of colourful building toys or Wiggles DVDs were going to distract him from his little blue engine... or the green one, the red ones or any of the others. So, we bit the bullet and used the engines for good. Thomas zoomed in front of the OT's scooter board, annoyingly demanding a bunch of crossing the line action as he went. Percy was covered in shaving cream more times than a little engine should be, in an attempt to break down sensory barriers. Poor Gordon and Henry spent a lot of time hidden in the sandpit/rice box/ball pit, needing repeated rescue missions.

It doesn't have to be branded, licensed toy hell either. Many friends of mine have children who love rocks, string or science experiments. Again, from an NT point of view, it's easy to think we should be teaching our kids to love a diversity of activities. And to that, we autism parents say, 'Would you like to be the one who teaches my child that? It would be awesome if you could take that one on for me.' And while you do, I might write a PhD, build a house, split the atom or have a Sleeping Beauty style sleep. Because that's how long it will take.

Embrace the beast, I say. You may be slightly bored, but your child will move forward faster.

3. You are among friends
Autism does not discriminate. It hits all sorts of families. Whether you meet those families in real life or online (or both), it will not take long for you to understand that their support and understanding can change your life. Reach out. Someone will grab your hand. I promise.

That whole 'a problem shared is a problem solved' thing is not as old fashioned and granny-fied as it sounds. I never thought I would spend my time typing my thoughts about poo or ways to put t-shirts on. But I do, and when I do, I learn more about how to do it myself. In a community of solution seekers, we are all better off. Among friends who have faced similar challenges, we can empathise and understand in a way that the rest of the world cannot. It's not so much about having degrees (though sometimes they help), it's about the wisdom and compassion that comes from having your heart ripped open and left open.

If anything, since autism came into our lives, I find myself looking at people who have not faced something as confronting as disability in their children with a form of pity. It's a profound experience that lifts you (if you allow it to) out of the mundane and into a constant state of transformation. It's an active kind of life, for sure. And though I would not wake up screaming for it in the night, I welcome it for the positives it brings.

There we go. Happy things. Now, if you will excuse me, I must return to the dark side. I'm trying to work out what Thomas the Tank Engine can teach me about legal campaigns and legislative reform.

Cooking up another theory...

Feel free to keep on clicking, this might not make a lot of sense.

Here in our protected little home learning world, I've been thinking about trust. About the biological nature of trust. And about how that manifests into what we see as autism, especially here on the HF/Aspie end of the spectrum (though I'm almost sure there's a relationship right along the spectrum).

I'm going to throw a few phrases out there, and then try and rein them in again - some thought crochet, if you will.

I'm thinking about fight/flight/freeze. I'm thinking about safety. I'm thinking about thinking. I'm thinking about the box that is the moment and the ability to think outside of it.

And it seems to me, for Billy at least, that 'big picture' it's all about trust.

It's like autism, for Billy is a biological lack of trust.

He lacks the ability to suffer the slings and arrows of everyday fortune, never mind the outrageous stuff. When his sensory boundaries are violated, it takes the moving of mountains to get him back into a place of calm and trust. It barely matters who you are - stranger or most intimate of associates (ie. me), if you sneeze/cough/scream/bark (OK, I don't bark a lot, but Scruffy does), then you join his crap list for a fair whack of time.

We are incredibly fortunate that Billy's extreme responses are very rarely meltdowns, or our lives would be truly traumatic. Billy doesn't melt down, he shuts down. He literally shuts up shop. If he can, he will run away (traffic, be damned). If he can't put physical distance between himself and the person who makes the noise, then he goes inwards. Hands on ears, eyes closed, foetal position, as close to the floor as he can.

He does what any of us would do when we've had the life scared out of us.

The only difference is that it's everyday life that scares Billy. And, for some odd reason that I find very hard to comprehend, that makes it OK for people who are not Billy to question the validity of his reaction.

'Hey kid, sneezing is totally normal, why would you react like that over a sneeze? Plus, you are just a child... grow up, get it together, pull yourself out of it.'

He can't pull himself out of it, just because people might want him to. If it's possible at all (and let me tell you, we've been working on this for seven full years), it's got to happen his way, in his time, in his body. Chemically. Biologically.

It has always seemed odd to me that autism is considered a mental disorder, and it seems even more odd that mental disorders are considered principally behavioural. Like you can learn your way out of them.

I'm not discounting the value of therapy, of any kind. It's awesome stuff. Critical thought, experience, evaluation and learning are brilliant things. I see change in Billy all the time, in response to targeted therapy and to experiences. For sure.

So, am I being naive to think that both the original behaviour and the change have a biological basis?

Repeated lived experience (the 'chuck them in the deep end' mentality) may well be the best (and most convenient) way build trust in a neurotypical child, but the longer I live in autism world, the more I believe that it is not high on the effectiveness scale for Billy.

What does work?

Time. Compromise. Sensory work. Sometimes... nothing.

Some days, it's a little depressing to have to accept that.

It's time to get my trusty teaspoon, and start moving that freaking mountain again. It's unlikely to disappear, but it'll make change for sure.

In the meantime, we'll work on it here in sneezing free, coughing free, barking free world. And, for what it's worth, stifling all those things is a quite the challenge. Trust me.

And if you can't trust me, trust Scruffy.

ETA: first study uncovered. My digging spoon always comes up trumps!

ETA 2: another one. I may not sleep tonight.

If you thought about it, you'd throw up...

This week we started Distance Education with Billy.

Distance Education, in Australia, is like homeschooling but with the full supervision of the Department of Education. It's a test for all of us. On a bunch of levels.

First up, I have to say that my son is a truly amazing child. The Mummy moment will pass in a jiffy, I promise, but really...

Up until now, our Mummy-Billy interaction has revolved around food, poo and play. All with a context of love (foremost) and therapy (always in the front of the planning and the back of the mind).

Now, for four hours a day at least, it's flat out learning. Arbitrary, just do it, kind of stuff. His little brain is processing a mile a minute, and let's be very clear, his brain is not naturally built for that kind of action. His tiny fingers are shaking with the penmanship pressure. His core is quivering trying to hold his head and his heart upright and together.

And he's doing it. Each session gets a little longer than the one before. Each answer comes a little quicker than the last one. Each time he speaks, it's a little louder than the time before.

We have a long, winding, bumpy, mirage filled, pot-holed road ahead of us, for sure, but we're on it together. We're a team.

Now, I need to do a bit more teacher sucking up.

All you folk out there who work with kids on the spectrum, I take my hat off to you. Therapists, teachers, principals, special ed people... teacher aides in particular, you guys earn your money. This is not easy.

It takes patience. It takes flexible thinking. It takes a lot of eraser work, lots of copies of whatever you are working on, lots of fiddle toys, lots of quickly assembled concrete materials, lots of bribes, lots of breaks,  lots of promises, lots of heart and lots and lots of time.

No wonder schools are freaking out around the world. This is heavy duty stuff. One adult to one kid gets the job done. Just. But who can afford that kind of ratio? Unless you are homeschooling (and to be honest, talk to me in three months time when my increasingly limited ability to earn actual money is hitting us...)

No wonder autistic kids are left to amuse themselves when the rest of the class are working on group activities.

No wonder people raise their eyebrows and question whether all these kids being diagnosed are really autistic.

No wonder the potential of ASD kids in mainstream classes is leeching through the floorboards in schools all over the place.

If the will is there, and it's a big if, then the resources are likely not. Even if the funding is there, it's not enough. It's not enough pay for such a huge job. At least in Australia, it's not. It's a vicious circle, and I am not willing to let my kid get chomped up in it. It's wrong.

I feel the size of a mouse right now (and if you know me IRL, you will know I am not even remotely mouse-like). The world of formalised mainstream education is lumbering along beside me like an elephant. By hanging out in our Distance Ed mouse-hole for as long as we can, we're avoiding getting squished by those big grey legs. At some point, we have to venture out into the clearing again, and I'm hoping to hell we find out the elephant is a buddy and not the galumphy, insensitive, mega-mammal it seems like right now.

This gig is tough.

I can see my kid is waaaaaaay behind his same age peers right now. Comparisons between children may not be universally useful, but when your child is presented with the correct age curriculum and he is missing huge chunks of the most basic of basics... it's sobering to say the least. He has a very high IQ, and he has natural talents, but the gaps are gi-freaking-normous.

I made a choice, and it was the wrong one for his academic development. It was the right one for lots of other reasons but the wrong one for learning. If I was forced to drop him into a mainstream school right now, he would be lost in the churning foam. Actually, being the sensory boy he is, he'd probably quite like being bumped around by foamy water, but that's another story.

For now, I love how he's responding to 1:1 teaching. He's trying. He's engaged. He's proud as punch. We've brought in the services of a trusted buddy to help out. This buddy is a trainee teacher, but more than than he's a kindred spirit - a soul mate of Billy's, a careful guide. We're hopeful that will start the bridging process from the Mummy mousehole to the classroom clearing of the future.

We may have made another mistake, who knows? Right now, it seems like a slightly terrifying but good, safe, enriching kind of option, but... so did our last choice and that ended up in a giant pool of crap-flavoured custard.

And seriously, if you think too hard about that, you will throw up.

In the aisle of the supermarket...

This afternoon, in the supermarket, Billy and I ran into his old pre-school teacher.

She recognised Billy, before she recognised me. Oversized tick number one. She greeted Billy before she greeted me. Gigantic tick number two. She didn't bat an eyelid when he retreated behind a freestanding display full of chocolate bunnies with his hands over his ears (a baby was having a tantrum over said bunnies and Billy needed a chocolatey place to hide).

This poor teacher had a hell of a job dealing with me. Speech and OT sessions were always Billy and I together. Early Intervention was Billy and I together. Pre-school was the first time he was expected to spend time somewhere without me. And though I put on a very presentable front, neither of us were happy about it.

I'm not sure why Billy is such an attached boy. Well, I have a few theories but no evidence (which, in autism world, means I have no freaking idea and may as well be wearing a colander for a hat and bedazzling my kid with crystals). Not that there's anything wrong with that.

I see that I am Billy's spare brain. His safe zone.

He lives in a constant adrenalin bath, spinning somewhere between flight and freeze on a hourly basis. Since he was a clump of cells, there's been me. Even when I've been cursing yet another sacrifice to the God of Underpants, or briskly forcing him past a crowd of cranky toddlers in a coffee shop queue (mostly minus my much needed latte) or, in the unquestioned worst moment of our lives together, holding him down with the full (substantial) weight of my upper body while a trainee doctor repeatedly attempted catherisation. There's always been, (and for as long as I can bargain with the boogey man) there always will be, me.

The other reason Billy might not want to leave home without me (I am AMEX Mummy!) is that home is controllable.

Sound, particularly surprise sound, is Billy's nemesis. Crying (particularly from babies, but really from the mouths of anyone) is Perry the Platypus to Billy's Doofenschmirtz. Funnily enough, we don't have much crying in our house, and a remarkable absence of babies. So home, in Billy terms, rules.  We do have the occasional moment when the dog barks when someone comes to the door, but after watching re-runs of It's Me or the Dog today, I think I may even have that one licked. Home is a haven from hyperacusis. It's a place where the adrenaline can bugger off and do whatever it's supposed to be doing... inspiring powerlifters or naming nightclubs or something.

Beyond that, I'm guessing Billy isn't massively keen on independence because the world is full of confusing, overwhelming, indecipherable, uninteresting, fast moving, irrelevant stuff annoyingly sandwiched between the good stuff. The world, to a kid like Billy, is most easily encountered for the first time, at arms length. Hence the love of DVDs, YouTube, documentaries, video games and endless hours spent quizzing Mummy and Daddy about their recollections of DVDs, YouTube, documentaries and video games. Then there's the other time, spent in an alternate dimension repeating, telling stories and recreating the scripts from DVDs, YouTube, documentaries and video games. The boy is quite content at home.

I've got Temple Grandin sitting on my shoulder as I type muttering, 'Push your kid, Mama...' And I'm listening, Temple. I'm listening. Given how profoundly his neurological safety net has been tinkered with (by nature, nurture or tiny wee pixies with a wicked sense of humour) I just want to push him in his own time, in his own way. I want him to give us a sign. Preferably one that doesn't come with heart palpitations and gigantic dilated pupils. He shouldn't have to do anything, just because society says it's time.

And that's where beautiful teachers like Julie, Billy's pre-school teacher shine like jewels that even I would like to own (have I mentioned I'm not a big fan of diamonds or flowers? Chocolates, on the other hand... sorry... back on task...)

Billy's first attempt at pre-school ended in hospital. I'd publish a picture of him in the days before he was admitted, but to be honest, I don't like looking at them. My tiny wee three year old looked like he was in a war zone. His hands were never less than half way to his ears. He clung to the furniture at the edges of the room, unable to focus well enough to let go. His eyes were like saucers, he was always shiny with sweat. I know this, because I was there. Every moment. I worked my way to the opposite side of the room to him, but I was always there. And Julie was OK with that.

Six months and a long stretch in the neuro ward later, he came back to pre-school. And so did I. And Julie was OK with that. She taught me her mantra, 'Small, manageable steps', and encouraged me to repeat it as I moved from the edge of the classroom, to the kitchen to the stairway to the car park, into my car and finally, home. It took a month or so, and Julie was OK with that.

She was OK because she's been doing this stuff for a really long time. She's taken countless Billys and Valeries through the same journey - just along a different path and at a different pace every time. She was learned and trusting and trustworthy.

Julie is a jewel among teachers. Among people. Even though she was exhausted, today, after a long day's teaching, she had the time and energy to greet us like family. She was interested in how her family had fared since she'd last seen them. Even if she didn't really care, she did a damn good impersonation of it.

When Billy emerged from behind the Easter display, he exchanged a few shy words, and clung to the trolley. But he wasn't sweating, and his pupils were fine. He barely needed me at all.

Except for when we got to the checkout and someone had to pay for the giant pile of chocolate bunnies he'd snaffled from the display.

It's Hopeful Parents Day...

Not in the official Hallmark Card-y kind of way (though that's not a bad idea right there...), but in the it's-the-6th-of-the-month-so-i'm-blogging there-today kind of way.

Hopeful Parents is a brilliant resource, and a great place to read this month's theory about Thomas the Tank Engine and his possible medical qualifications.

You should probably also read some other people's stuff while you are there.

It will be way more sensible.

Home is where the learning is...

While we wait for issues in our lives to resolve, we are teaching Billy at home. It may last a couple of days, or a week or longer... who knows?

I know lots of you are already homeschoolers. I know lots of you are autism parents. If you are not either of these things (or even if you are), indulge me for a moment.

I'll start by saying, I can see how homeschooling has its drawbacks. There's the social questions. There's the lack of consistent peer modeling. There's the general challenge about what the hell are you supposed to know what teach. Never mind how in hell will I ever have a haircut again?

But, it seems right now, to have a LOT of benefits. For all of us.

We are very fortunate that Billy has a very easy-going temperament. He is loving and joyful and connected. Most of the time. These make for a pretty solid atmosphere in the house. We are also fortunate that Billy is relatively bright. We have the odd Rainman moment (as in the freaky, how-does-a-seven-year-old-even-know-that-fijian-banded-iguanas-exist kind of moments) but generally, he's keen to find stuff out. He loves what he loves, but he's happy to find out random stuff just for the hell of it. He's kind of like both of us in that regard.

These last couple of days, we have done art projects. We've read aloud and asked each other questions on what we've read. We've visited the pool, the park and the playground. We've written stories and emails to Nanna. We've cooked, we've done maths, we've researched, measured, speculated, designed, planned and reported.

I'm sure we will hit walls all along the way, whatever schooling journey we choose for the next part of our lives. I'm definitely sure it will be challenging. I'm certain I will struggle with the responsibility of big  and small picture education issues. Hell, I'm always struggling.

But, what we have in our house is a well child, a happy child, an engaged child.

He is suddenly planning projects, and strategising how we could best find an answer to his questions. He is seeking resources on line and on the bookshelves (should we tell him we are going to pack them away soon??). He is laughing. A lot. His lists of anxious protective behaviours ('I will not have good dreams, or scary dreams, or bad dreams, or nasty dreams...') are getting shorter every night.

I worry about his friends. I worry for them, and for Billy. I miss them, and Billy misses them, and I know  (and he doesn't) that we won't see them every week day like he has in the last two years. I worry that he misses the deep value he gained from building trusting, loving relationships with credible, loving, compassionate adults who were not related to him. I worry that he will lose his ability to be socially independent. I worry that he will lose the buffer zone where he learns how to be a kid by watching the consistent behaviour of the same group of peers every school day (and the odd birthday party weekend). I worry about the loss of community, for all of us.

Then I remember that this is not forever. And even if it is, we are consciously (painfully) aware of the challenges. I know we have a team of therapists, and doctors and friends who will help keep us real and respond to our need for connection and consistecy. We can and we will make the best (if not always the 'right') decisions. We have brought him this far, and we will continue the journey with love and honesty and white-knuckle-adrenalin-pumping-reality-checking integrity.

I will not miss the ignorance. I will not miss the judgement. I will not miss the misinterpretation or the unspoken assumption that we are less than complete as a family, or as individuals.

I know I've said this before, and I will say it again. (nooo... I hear you cry)

I would not wake up screaming for it in the night, but... having a child with special needs, to me, is an exquisite gift. It is a life circumstance that challenges and defines and strips away extraneous layers. It's equal parts terrifying, confronting and affirming.

I know I am alive. And I know how important it is that I value and live each and every moment with integrity, honesty and passion.

In the words of Mr T, 'I pity the fool'... who doesn't get it... or who questions it, without an inescapable reason to understand it.

And, speaking of Mr T, now I need a Snickers.