Thursday, March 31, 2011

What could the future hold...

It's the question that lurks around in the back of my brain like dog poo in park grass (you know, jumps out and grabs your attention at the most inconvenient moments, and takes a while to get rid of...)

I wonder where adult Billy will find himself? What will he be able to do? What will be out of his reach?

I wonder if he will be able to drive, or go to university, or have a girlfriend/boyfriend. I wonder if he'll be able to have a job. I wonder if he'll be able to go shopping. I wonder if people will mock him when they think he can't see.

I wonder how to prepare him for a future that I can't picture. I don't have the skills or the experience to predict where he'll be. I often say, 'Oh I have no doubt Billy will change the world, we just have to stop the world from changing him first.' But really, I'm just spouting platitudes.

I do know that he has a gigantic pile of ability and enthusiasm and humour and love inside him. I do know he is motivated by nothing but good. I also know that he talks funny and walks funny and thinks funny. Well, it's not technically funny to me, anymore, but it's definitely funny to his peers, to teenagers and to the odd other parent (FWIW, if you are an adult and you choose to look at my child with a gaping mouth and a expression that says, 'Gosh, I'm glad that's not my kid', I will follow you and slap with a maggoty fish. I have some for just this purpose.)

Back to the future (now there's a title for a movie or two...), I think there are some positives for Billy and his ASDian peers.

There are a lot of kids on the spectrum, and many many more with ADHD and other behavioural/learning/developmental disorders. The future will be full of out-there adults. This has gotta count for something beyond uber efficient help desks in technology companies and a roaring market in chicken nuggets.

It will surely mean a lot more thinking outside of the box. Need a creative solution for global warming? Ask an Aspie with sensory issues. The drive to get the sun out of your face is strong in those ones. If anyone can see through the extraneous fluff, and pinpoint the real need, it's someone with autism. Dispense with the fear that someone might not agree with you, and the world's your oyster. The rest of us just need to get much better at listening and understanding what autistic people are trying to tell us.

One of my favourite things about living with an autistic person is the respect he has for 'the moment'. There are times when a moment is so excellent, it is repeated over, and over, and over and over. Makes him quite the cheap date. Alternatively,  there are times when a moment is so nasty, that the rest of eternity will be spent avoiding a repetition. We will never waste time on a spinning piece of playground equipment again. Why? Because today, one made Billy hurl. Such equipment is heretofore relegated to the pits of hell. Making trips to the park just that bit less fraught with choice.

I think this will add two wonderful things to our lives in the future - a sense of unadulterated joy de vivre, and an adamant sense of efficiency. What an interesting work flow there might be in 20 or so years...

That is, of course, if the non-autistic folk can accept the autistic folk for who they are. If they can see past the odd speech, the funny walks and the desire to eat the same lunch every single day. If they can accept that someone who communicates with a device, not a voice could be their equal. If they can understand that a bunch of unusual social choices do not dissolve a person's worth.

With that, I descend into shameless self-promotion. Kind of. Through My Eyes, the song, is about to have a whole new incarnation.

The video below features someone I am proud to know. It showcases his talents and it gives him a chance to communicate with people who exist outside his own experience. But that's where the content of the video ends, and the bigger meaning begins.

Scott James has Aspergers. He can sing like very few people in the world can, but his journey with autism has not been a particularly easy one. His adolescence was filled with bullies (peers and adults) and his potential was not recognised by many. He didn't always make choices that made universal sense outside his own mind. Luckily, he lives in an amazing family that couldn't be stronger and in a community that is learning to understand him.

Scott put himself on the line and auditioned for X-Factor UK a couple of years ago. He made it to the end of bootcamp. For those of you that know autism, and watch those shows... just think of the pressure that one of those shows puts on a person. And then think of how your child/sibling/partner would cope with all that pressure - the timetables, the social demands, the lack of reality in a reality show.

Thanh Bui did such an amazing job of the Australian release of Through My Eyes. He gave the song life, he gave the song heart and soul and he supported it as it developed it's own momentum in autism world.

Given the trajectory that Thanh launched, we were really concerned to make a good choice about finding the next artist to record the song. And along came the news that a young man in the UK had done an extraordinary audition for X-Factor. A bit of YouTube/MySpace/Facebook-ing and a flood of tears after watching a beautiful mother/son relationship, and we'd made contact with Scott James.

It's been a long road to get to the release of Scott's version of Through My Eyes, but it's been a road that has taught me more than I ever thought possible.

It's shown me that people should be accepted for who they are, not what they can offer you. It's shown me that a pure heart is worth more than anything and that there's always a logic to someone's actions, even if it's not obvious. It's shown me that the faith that parents have in their children is not misguided, no matter what anyone else thinks.

It's also shown me that Billy's future is in his own hands. He doesn't have to do any of the things I have dreamed for him (Booker Prize, UN posting, atom splitting). He has to do what he wants to do, how he wants to do it, when he wants to do it. And he will probably choose do it with a Thompson's Gazelle involved somehow.

And I will be waiting for anyone who doubts him, with a squirmy wet fish in thwacking position.

In the meantime, have a watch of Scott's video. It will be released on 2 April (World Autism Day) and all proceeds go to an autism charity in Scott's home town, if you want to drop a small amount of money on iTunes.

Two videos in two days... can you tell I just discovered the video linking gizmo...?

Wednesday, March 30, 2011

Ode to the Post-it Note...

Alternate title: Further Adventures in Homeschooling...

I have to start by saying I'm generally all for using as little paper as possible. I've got a touch of the hoarder about me, only in the fact that if I am able, I seem to accumulate piles of crap faster than a sewer. So, I try to not acquire it, so I can avoid collecting it.

But it's a little piece of paper that I feel the need to sing about right now. It's the Post-it Note. It's my teeny tiny saviour as I wrestle autism and curriculum and the fact that there are only 24 hours in every day.

You can write on them, you can cover stuff with them, you can cut them up into useful shapes. You can make patterns with them, you can re-use them, you can eat them.

OK... it's probably not a good idea to eat them, but right now I'm using so many, Scruffy's got the idea they are something to be coveted so he's made it his quest to eat a few.

It's tough for Billy (and often me) to isolate the most important information, at any one time, on a page or a screen. It's even tougher for him to NOT be distracted by the least important information. But if you add a Post-it... You can stick one over a computer screen to block the flicking, repeating, animated thing that often attracts the autistic eye. You can summarise information on a Post-it and stick it next to the confusing mess of symbols. You can cut holes in a post it to make a window to look at.

Handily, you can use the multi-coloured ones to make a visual schedule. I can do a bit of creative sticking on a worksheet, and then say, 'Do blue, then pink, then yellow', and somehow that's easier for Billy than saying, 'Do questions 1-3 while I eat my toast.'

It's often said that manipulables like Cuisenaire Rods and Base Ten blocks are the keys to getting tactile, sensory focussed autistic kids to engage with basic number facts. I agree they are a great idea, but find it's hard to link the concrete play back to the worksheet (and therefore generalise the learning). Enter the Post-it, which can easily, quickly and dynamically label collections of blocks. You can write sums using separate Post-its, and assemble the information in a form that mimics a traditional sum (well, depending on how quickly you do it). It builds a little gluey paper bridge between 'fun with blocks' and 'how in hell do I answer 4 +4+4=?

As I re-read what I've written, I'm starting to think... what has my life been reduced to? But I'm bigger than that thought, and more to the point, Billy's learning journey is bigger.

Sometimes, homeschooling is so hard I want to cry.

I've never had even the slightest feeling that I'd like to speak roughly to my son. Until now. Not right now, but when I've come up with 19 ways to ask, 'Which number is the odd one out?' and he's still staring at a butterfly outside the window... in those moments, I think up lots of abusive swears. I think, people, I do not say.

I always thought of myself as a fairly creative thinker, but this homeschooling adventure has brought me back to reality with a thump. I did train as a teacher long ago (and met some of the best and the worst people on the planet in the process, but that's another post) and the lecturers were always going, 'Oh that Valerie, always taking the road most obscure...' I had visions of myself covered in butterfly stickers and home-made wings uncovering the concept of metamorphosis with a pack of enthralled kiddies flitting in my wake...

Let's just say, I may as well be reading Kafka's take on metamorphosis to Billy... it's not his lack of ability to understand that gets in the way. It's autism, that requires short, sharp, repetitive stabs at the same piece of information in the same way using the same language every single time.

I had no idea how verbose I was (I hear people who know me in real life gushing coffee out of their noses as they read this). I had no idea how inconsistent I was (again, a fair few ex-bosses will be wiping tears of mirth from their eyes). I had no idea how easy it is to turn a simple concept into a meaningless babble. Actually, I kind of did know I did that, but there's a lifetime of chatting habit to change there.

Homeschooling Billy has clarified for me that the world we live in is an abyss of meaningless communication, with a few choice boats of wisdom battling the waves on the surface.

And my Post-it friends are the sails on those boats.

I love you Post-its, and all who sail on you.

Now, I believe I said I felt like singing about Post-it Notes and this may be the cutest, most meaningful (and easiest for your ears) way to do it.

Post script (get it?): I am not sponsored by 3M or whoever makes post-its and in fact thought this product was  a stupid waste of time and flourescent dye until about a week ago. If the makers of post-its want to get in touch about ASD friendly post-it products, I never said that bit about wasting dye...

Saturday, March 26, 2011

Daddy rules the world...

Part of me thinks I should be offended, and to be honest, part of me is - a little.  Really, though, I think something very important is going on.

We've had a lot of change in our lives over the past three months. We've started homeschooling. We've sold the house. Our timetable morphs all the time depending on what we are working on (professionally... TV demands the hours, not the other way around). The change is still going on (did I mention that we are three weeks away from settlement on this house and we... um.. haven't found another one yet... aaah). But one really important thing has grown stronger and clearer and brighter in this time.

Billy and Daddy are a team. Without wanting to give Charlie Sheen any more airtime than he's already got (because clearly my blog sucks in the readers like the big boys), Billy and Daddy are a winning team.

Daddy will fix anything. Daddy has all the answers. We need to call Daddy many times in the day to tell him what happened. Daddy's potential feelings are referenced all day. Daddy knows a lot of stuff I do not know. Daddy will let him do stuff, even if I say no (we're working on this one as a family...)

There are so many good things about this, in my mind. It shows that Billy can and does understand relationship dynamics. It shows that my boys have a great bond. It shows that Billy's Daddy is a really, really wonderful Daddy. In many ways, Billy has the world at his feet because of his Dad.

Here's how.

Billy is seven and a half now. He's a boy. He loves physical activity and video games and computers and animals. He likes to watch things crash and fall, and he thinks it's unbelievably funny. As a girl, who's brothers were older than her, I am in a whole new world of confusion. Violence (even animated violence) just isn't funny to me. But as I type, I'm listening to Billy giggle as he drops a car on Bart's head on the PS3.

Thankfully, Daddy is there. Daddy gets it. Daddy has remarkable patience. Daddy shares his fun. In a responsible way, of course.

It's not just about video games and violence, though. It's about faith.

Daddy isn't ruled by fears. Daddy deals with the 'what ifs' when they happen, not in fifteen ways beforehand. Daddy gives things a go and accepts the outcomes for what they are.

We play good cop-bad cop autism style.

I've got the back story and the google degree and the advocacy fuelling my engines. I've got the educational aims, the therapy goals, the (vaguely) linear path in my head. I'm accountable to the doctors, the teachers, the therapists. I've got the diet and the medicine and the cuddles. This is all delivered to Billy in a gigantic pillow of love, but if I'm honest, there's rarely a moment where I'm not thinking, 'Holy Crap, what's next? What should I be aiming for, investigating, trying to improve??'

Daddy on the other hand, has got life. It's a hell of a weight, really. He drives the family bus, collecting the fares, paying the bills, sorting out the dings and scratches (mostly caused by me). He holds us together and moves us forward and keeps us laughing.

I've never heard him complain about autism. I've never seen him show he's embarrassed by Billy's behaviour. I've only seen him guide and challenge and love.

It's not like we don't have bad days, and it's not like we don't both get it wrong. We cross purposes and paths (and swords) all the time. But the point is this.

It's about some kind of balance.

I think someone has to have the autism in the front of their focus. If we had decided to just love Billy and ignore the therapeutic stuff, he'd still be sifting dirt and running trains in front of his eyes. On the other hand, if we were both autism crazies, we risk missing out on the pure kid fun and all the learning and development that goes along with that.

Somehow, by respecting each other's focus, remembering to communicate and allowing each other to do what we do as parents, Billy comes out the winner.

This journey is definitely not the one we one we thought we were going to take. Autism has changed our lives on every single level - emotionally, financially, logistically. We don't get much of a chance to talk about it, but somehow we keep on going forward - sometimes lurching, sometimes stalling, sometimes flying.

And sometimes falling and crashing into things.

Billy loves those times the best.

Thursday, March 24, 2011

Just one day...

This is more a request on Billy's behalf, than from me, but I will not pretend that this would not make me happy too.

Please, for the love of all that's cute and fluffy and innocent, could we just have one day where some sound doesn't leap out of some corner and whack my kid in the head? Just one. One day. No tears. No sadness. No statements like 'Everything is wrong' out of a sweet, seven year old mouth.

I don't begrudge Billy's statements, and I don't take them for granted. I know how lucky we are to have language at all. But seriously, if there is some benevolent fella in a beard (or a lady in a toga, or an alien or whatever) looking over us, could you cut the kid some slack?

Today, I bought a frock, and being the person I am, I bought it online. There isn't a lot of mystery with me and clothing sizes. Let's just say I am at one end of the 'able-to-buy-clothes-relatively-easily' scale, and samples are not my friends. I have recently fallen in love with the work of an Australian designer called Leona Edmiston. She makes awesome, wearable dresses that make you feel like an actual woman (not a collection of forgotten details and 15 year old t-shirts). Fortunately, she also considers grown ups in her sizing. I am the least girly girl in the world, but these dresses don't scare me. So, I bought one.

It was delivered by courier, which requires (amazingly) a knock on the door. This makes the dog bark (the only time he does). This makes Billy cry. And it's not just the tears, it's the recovery time. It's the jolt out of the school work we are in the middle of, it's the sweating and the fear that it will happen again.

We went to the park. The Council has made a clever decision to schedule mowing and leaf blowing (WHY do leaf blowers exist? They're leaves, people, not chunks of poo...) when the tiny park was full of children. This makes Billy cry.  And it's not just the tears, it's the retreat into himself. It's the need to run and jerk and twist his head like Stevie Wonder mid-tune to try and shake the physical feeling of the sound free of his body.

We go to the supermarket. It's early afternoon. Time for babies of a certain age to be winding down for an afternoon sleep. Tired babies cry. This makes Billy cry. And it's not just the tears, it's the desperate need to get out of there ASAP regardless of where our shopping needs are at (too many times this happens before I get a chance to even look at the red wine... OK, so maybe that's a good thing).

We walk the dog. A dog barks. We walk down the street. Someone's doing their edges with a whipper snipper. We go to the pool. Someone blows a whistle again and again and again.

Enough, already.  Shush.

I want to put a sign up at the end of my driveway, saying, 'NO DROP-INS OR CANVASSERS (but not for the reasons you think)'. Give us some warning.

The drop-in means the dog barks, means we lose Billy. If I am home with just Billy and someone calls offering me home insulation or a better deal on my freaking energy bills, I have to restrain myself from throwing something at their head.

I want to say to people in parks, 'Can you please tell your kid to stop screaming just for fun?'

I want to grab small white dogs by their sparkly little collars and throttle the yaps out of them.

I know I can't, but I want to.

Instead, I tell my child everything's OK when in his terms it's not. I reassure him that he'll be OK, even when he assures me he won't. I push him into the world every day and count it a success if I don't see the tears.

Today was one day. Today was every day. Today was actually a good day. It doesn't go away. It doesn't really get any easier. We just get better at smiling through it.

Here's hoping we get closer to the red wine tomorrow. Or the chocolate at the very least.

Saturday, March 19, 2011

A special kind of parenting...

As we get closer to the release of The Autism Experience, my mind is full of stories of parents like us - autism parents.

The book is a collection of stories from all over the world. The thing that links us is at least one autistic child in our families. I've spent the best part of two years reading, editing and annotating contributions from around sixty women. I think what we've got is beautiful and valuable and interesting and funny and really, really sobering.

It's a life not many of us anticipated. It's by no means all disastrous, but it comes with some curveballs.

There are times you feel exposed.

Like any child, an autistic child will want things they can't have or have a desire that can't be satisfied. People call the behavioural reactions to these events tantrums in NT kids, and they can be frightening and intense, but generally a child can be brought out of a tantrum with consistency and time. In an autistic child, what looks like a tantrum can often be a meltdown. A meltdown is not rational. A meltdown is not easily manageable. A meltdown needs to end before anything can be 'done' about it. An autistic meltdown can range from tantrum like behaviour to severe anxiety/panic attacks to shut down.

Having a meltdown is not a choice by an autistic person determined to have their own way. It is a reaction to the perceived uncontrollability of circumstances external to them, combined with inner circuitry that makes perspective almost impossible. They may improve with age, or may not.

Parenting your child, of any age, through a meltdown is not easy. To the untrained eye, there's no doubt you don't look like parent of the year.

There are times you feel judged.

Many of us experienced an 'eat your vegetables or you can't leave the table' moment as a child. Most of us felt very confident that we would have children who were going to eat as balanced a diet as we could afford. Autism had other ideas for many of us. Not only do we live in a world of supplements, vitamins, hidden toxins, dietary restrictions, allergies and intolerances... many of us have children who eat a very restricted range of foods.

It might be because of their sensory issues. It might be because of oral motor strength and coordination issues. It might be a medical issue - reflux or other GI conditions. Sometimes we know, sometimes it's too complex to work out.

No matter the cause, serving up the same dinner to your child night after night looks odd. It doesn't feel odd to many of us, who are working day in and out to extend our children's eating skills. But to Grandmothers, and fellow diners at restaurants (for those of us able to take our kids to restaurants)... it's clearly odd.

There are times when you are misunderstood.

When your child is unable to speak in particular circumstances, but can in others, people might think you are not encouraging them to use their voice. When your child is sick repeatedly, exhausted by simple child activities, uninterested in leaving the house, people might think you are impairing their social skills. When your child is unable to keep their hands to themselves or stay out of their peers personal space, people might think you are not teaching them self-discipline.

As autism parents, we know those people are wrong. We know those people are ignorant. We know those people are using their own lives, their own fears and their own deficits and projecting inappropriately onto us.

As autism parents, we devote our lives to our children first, and then to fighting that ignorance.

We might do it through books, or songs or blogs. We might do it through speaking and teaching. We might do it through just living our lives - holding our heads up high, celebrating the wins and not hiding the losses.

We might want to do it through acts of random violence on judgemental, unpleasant folk but generally we restrain ourselves.

So, if you see a parent struggling with their child's behaviour, and your first thought is something along the lines of, 'A good smack would fix that' or 'That child is too big for that nonsense'... please take ten seconds. Take a breath and either offer some help or walk away forcing yourself to think nice thoughts.

If you are a professional and you deal with children and parents every day, please educate yourself before you judge them and their choices.

It might not be autism, but it's something. Something that you do not know everything about.

The world can only be a better place if you can at least try to open your mind.

Given the growing size of the autism army, it's probably a good idea. We've got lawyers among us and we're not afraid to use them.

Wednesday, March 16, 2011

Breaking the code of learning...

Week five of the homeschool adventure, and there are some clear patterns emerging. I'm learning about learning while watching Billy learn.

Scruffy, from his position at my feet, is learning that humans spend their time doing some really odd stuff.

Here's a summary of what he may have observed me learning.

1. The more trivial the goal, the easier the learning
If I spend ten minutes saying 'add 2 and 2'. See 1,2 plus 1,2... what does that equal? Two apples, add two apples, how many apples have you got now? Two blocks and another two blocks, how many blocks is that? Billy will slump, yawn, giggle, look around, squirm around on his squishy sitting cushion, stare lovingly at the computer and ask if cheetahs hunt gazelles.

If I set a timer and present Billy with a number sentence 2+2=? He will answer the question correctly in under ten seconds, while staring excitedly at the timer.

Why? If we take the pressure off the cognitive process and place it elsewhere, the cognitive process becomes easy. Or my son is oddly empowered by timers. Could go either way.

2. Turn down the noise
Though our whole lives are lived by this maxim, there's a figurative side to it too. A page full of numbers and letters is just that - a random, meaningless collection of symbols. In his gigglier moments, Billy tells me things move around on the page and, to be honest, I don't want to contemplate what that means. It scares me like the times he tells me he sees 'fireflies' in his field of vision. Any neurologists out there, feel free to weigh in on that one.

I have a plastic folder full of pieces of coloured cardboard and paper. They are cut into various sizes, some with windows, some L shaped and some N shaped and some H shaped. I use them to either block out the information on the page that we are not working on right now, or to focus Billy's attention on the spot he needs to be writing. The added bonus is that I can also make the windows in the shapes smaller and smaller. Did I mention that Billy's natural handwriting is the size of your average elephant footprint? We're working on bringing it down to a koala paw at least.

3. Recording brings out the inner chatterbox
Billy has, in his lifetime, gone entire days without speaking a word to anyone but us. On these days, even we only get a select few pointed communications, usually related to trains and snacks. The combination of his easy going temperament and extreme sensory processing disorder makes for a generally minimal level of verbal communication.

So, when I realised Distance Education required a fair number of recordings be made and sent back to his teacher, I was worried. I'm thinking, he's going to clam up and say nothing when he has to do 'news' and reflections on maths (lord knows, I've got very few positive reflections on maths, even on a talkative day...) Once Billy worked out the technology, and heard the sound of his own voice on the computer a few times, we were in for a surprise.

We can't shut him up. Nor can we pull him away from the front of the camera, or dissuade him from 'performing' whenever he thinks the video camera might be useful to document his learning journey. With an electronic audience, all the communication compromises disappear.

4. 'Writing' is a relative concept
Billy has to complete two journals every fortnight. I asked if one could be typed, because handwriting for Billy may as well be renamed 'marathon running while memorising the encyclopeadia'. This was fine by his teacher.

I'm still not sure what she's thinking about the first four weeks work from Billy on her desk. The handwritten journals consist of two skeletal sentences. Those took maybe thirty minutes each to complete, and bear the stains of sweat, procrastination and chocolate bribery. The typed journals were done and dusted in ten minutes, and are a couple of paragraphs each. They contain descriptions, jokes, information and the odd line of dialogue.

Why is handwriting so hard for so many kids on the spectrum? There must be Phds out there on this stuff.

5. Everything has a smily face
I'm not sure if all school is the same, but the NSW Grade Two curriculum demands an awful lot of pictures. Draw a picture of yourself measuring the mass of two objects. Draw a picture for every letter of the alphabet. Draw yourself drawing a picture. It's like the Old Spice man sketching.

Billy's not a natural with a pencil in his hand at the best of times, but... every single picture he draws has a smily face. Him on a scooter - smiley (him and the scooter). Him measuring the mass of a stapler and a teddy - smiley (him, the teddy and the stapler). Him drawing - smiley (him, the drawing and his pencil).

I have to say, despite all his challenges, and the exhaustion of processing the vast volume of school work (and art work) he has now, the smily faces endure. And they make me smile.

Last but not least...

6. Chocolate is a potent teaching tool.
Think about it. It's bribery. It's reward. It's distraction. It's mental health for me. Only downside? It's poison for the dog. He's not thrilled with the new currency in our house. He'd prefer dried kangaroo.

I've said it before and I'll say it again... teachers are very special people. I am not one of them. I knew once I did the first prac on my teaching degree way back in the 90s and people called me Miss Foley. It made me shudder. Now that I'm homeschooling, I know for sure I am not a natural teacher. It is hard graft, and I only have one student who I know very, very well.

I can only dribble absent-mindedly when I contemplate the job that teachers of children on the spectrum do every day, for minimal pay. It is impossibly, frustratingly difficult. The modern curriculum provides a lot of multi-modal, many-perspective learning. The average autistic child (and my kid is obviously exceptional at being autistic) generally needs just one doorway into understanding. Problem is, it might be the tenth of eleven modes. As his supervisor, I grit my teeth through all the brick walls, hoping against hope that the next one will be the one that morphs into something resembling sense.

It's not about capability. It's not about understanding. It's about conceptual clarity - the prism of autism docking with the portal of information.

And the caffeine of the chocolate releasing the motivation endorphins of the humans (while avoiding the jaws of the dog).

Easy, really. If you are an Enigma codebreaker.

Saturday, March 12, 2011

The solution is underpants...

My little boy is growing up in front of my eyes. Seriously. He's tall.

He's seven and a half, and he's the height of an average 10 year old. He's slender (despite his all abiding love for hot deep fried potato products) and gangly. And as he walks along beside me, almost at shoulder height, bobbing and weaving in his skippy-hoppy walky way, I have to smile.

I smile because he's so himself. So unencumbered by social expectations and kid cool. So at one with the demands of his own being. So buoyed by forces I can only speculate about. I smile because he doesn't miss a trick, in his terms. Every train, every animal, every green car - they all rate a mention. He's giggling about Phineas and Ferb talking about toilets. He's inventing compound words (what's a mixture of yellow and black? Blellow. What's a gazelle crossed with a deer? A gazeer). He's planning the next addition to his toy collections and asking again and again (and again and again) whether we can get them.

I smile because if I didn't, some days I'd cry.

I see what other kids his age are up to. I see the sleepovers and the sporting competitions and the choirs. I see the excitement about growing up. I see the mastery of tasks not related to toys and TV shows. I see the parents sharing a wine as they roll their eyes over emerging crushes. I see the carpooling and the hastily arranged babysitting and the sudden surprise decisions to share a meal while the kids play.

I really love my life. And I really love my family. I love what we have become, and I love the way we handle ourselves - as a unit and as individuals. Most of all, I love what Billy has brought to our lives - beyond the fact that he made us parents. He made us thinkers, and feelers and adapters. He made us appreciate the good moments, and celebrate the small steps right alongside the giant leaps. He made us understand that 'bad' stuff happens all the freaking time, and we can and will endure.

As I watch him skipping along, anticipating the next moment of pure pleasure in his life, I am full of appreciation for the effect he has on us. I am certain he will go on to have a similar effect on many other people in his life. That's if some of those other people can wipe the disdainful judgement and pity off their faces when they meet him.

He can't sit still. Big deal. He walks funny. So? He repeats himself and interrupts. And your point is?

Every moment of Billy's life is lived in the same mode I'm in when I choose my underwear for the day. I'm sure as hell not looking like the chick on the swing tag, but it works for me, and the important people in my life think my choices rock.

Each day, I have to remind myself that looking 'like the other kids' is not success. Being able to be Billy is the goal. Being able to be happy and healthy and some other 'h' word I can't think of right now... that's the aim.

It's so easy to think, 'phew, today was a good day' when it's a day without too much obvious autism in it. But that can't be grounds for celebration. He is who he is. He does what he does. We do what we do. The fact that we all (sometimes) look about as subtle as testicles on a birthday cake shouldn't be a problem. We're not doing it to annoy people. Besides, Chelsea Handler gets away with that crap every day of her life.

Of course, we're all hoping for a day without meltdowns or gigantic allergy shiners or endless sacrifices to the God of Underpants. Of course, we work like very enthusiastic ants to maximise health and minimise distress. Of course, we are constantly working on goals of so many kinds that our heads spin.

We want our son to have every possible chance for happiness and fulfilment and success. That goal must be inclusive of the fact that he is autistic. Achieving that goal will come with a fair size serving of funny walks, slabs of TV show scripts and the odd collection of merchandise. It will hopefully also come with better immune function, less toxic overload and a brain that sends more reliable messages to his body. That would be awesome, and I'll work my ring off to make that possible.

But the fact that Billy will likely continue to look different, sound different, think different... that shouldn't come into our measure of success. There are reasons for that difference that we don't yet understand. We can't let anything distract us from trying to understand what those reasons are.

This is really the essence of what Billy has taught us.

Normal is a fallacy. It's a mirage. It's something we think we're heading for, without ever really knowing what it is. It taunts us as adolescents. We mimic it as we age. But our son was born without an inbuilt 'normal GPS', and it's toughened us up. We have thicker skins and bigger hearts than we did before. We have x-ray vision, supersonic hearing and a renewed passion for finding solutions and answers.

Some days, I need a reminder to wear these gifts on the outside like Superman's undies. So what if they are a little embarrassing.

Every day is a win for my kid. He climbs a mountain to achieve things that other children do without conscious thought. He manages to joke when the world hurts him with weapons that are playthings for his peers.

I don't think this is a question of embracing neurodiversity or not. I think it's a question of focus.

I'm not aiming for my kid to be normal. I'm aiming for my kid to be capable. I'm aiming to be able to leave this world without the fear that my son will be a natural target. I'm aiming for a world where he's able to make choices for himself, without instant judgement or misinterpretation.

And this requires the world to meet him half way - to open their minds and their hearts in the same way we, and so many other parents have done.

Perhaps it would also help if we all wore our undies on the outside more often. Just so Billy can have the odd smirk at the 'normal' folk in the same way they smirk at him.

Sunday, March 6, 2011

I'm at Hopeful Parents...

Click through to Hopeful Parents if you have the time.

I've had some thoughts about parenting and cheetahs (not parenting cheetahs, that would be way too pointy). Other people have thought much more significant things.

Saturday, March 5, 2011

Sensory house hunting...

This week we sold our house.

We got a great price and we are very lucky to have done as well as we did. We're looking forward to a change. But, it's definitely worth a quick moment of reflection on autism, SPD and what home does and can mean.

First, there's the process of preparing your house for sale.

We don't use any cleaning chemicals in our house, as we know Billy's toxic load is quite high enough. We use essential oils, water, bicarb, vinegar and elbow grease. I've joked through this whole process that I see why 1950s housewives had those teeny tiny little waists. OK, so the easily available pharmaceutical speed may have helped, but a lot of it has to be sheer housework sweat. Our house had to be uncluttered, shiny and non-stinky twice a week for the last month and a half. That meant wiping, dusting, scrubbing and sweating through a really odd late summer heatwave which curiously hit temperature peaks on a Thursday evening and a Saturday lunchtime - our open for inspection times.

Then there's explaining to a seven year old autistic child why people are entering his house (and playing with his trains) when he's not there. Twice a week. And while we're at it, explaining what 'selling the house' is eventually going to mean, and that it doesn't mean today but soon this house will be someone else's, and no they are not going to knock it down, but no we won't be there anymore we will be in another house and yes you can have a green bedroom in our new house (so no we can't rent we will have to buy) and yes you can probably have a turtle but no it can't live in our tadpole pond because we won't be living here anymore....

Exhausted from the world's longest sentence...? Well, it's nothing compared to how we feel about explaining something so very concrete and yet so abstract as an impending house sale.

Then there's the endless search for a new house. Billy thinks any house is fair game, and is always yelling out from the backseat about some random house he's seen as we're driving somewhere. He's very patient and well behaved when we attend open houses, though if there are trains in the house - fuggedaboudit. Then he's a one man mission to kleptomania. He's all about the houses with trampolines, wide lawns and if there's a bean bag to crash in, he's sold.

Today, we went to an auction in the suburb we are keen on, just to get a sense of what the market is doing. It was depressingly expensive, but that wasn't the eye opener for us. That came in the form of what sounded like the hounds of hell barking next door. As the auctioneer was doing his gavel banging thing (using a dongly wooden gavel he oddly kept stored down the front of his very well tailored suit trousers), the barking sent Billy into a sweaty spin. He looked at me, with dilated pupils and said, 'Why do these things hurt me?'

We had brought my trusty iPhone. We had tickled and wrestled as we walked up the street. We had steered clear of as many whimpering babies as we could. But the snarling of what sounded like fifteen pitbulls was too much for us. We left, leaving the bidders to argue in increments of $5K, amazed at how sound aware we have all become since Billy came into our lives. Seriously, not one other person batted an eyelid at the barking. To be honest, never mind the SPD impact, why would anyone buy a house next to attack dog central??

When we got home, we had a bit of quiet time. We fed the dog, and watered the garden and had a little ferret around our favourite spots in what will soon be someone else's house.

And in that time, I came across a bunch of reasons why I secretly don't want to move at all.

There's the sandpit where an undiagnosed two year old Billy would spend hours staring into the cascading sand he would drop in front of his face. We soon learned to hide trains in the sand so he would at least challenge his sensory defensiveness, and at best advance his fine motor strength. We added water, and dirt and sticks and stones. We welcomed the dog in, to increase the chaos quotient (Scruffy magnanimously complied, especially in his puppy years). We built the Island of Sodor again and again. We blew bubbles and traced their patterns in the sand. We counted and sang and laughed, and soon enough, Billy stopped sifting and started building, creating and expanding his world.

Then, there's the frog pond we built with our own hands, and populated with tadpoles from the garden of Billy's first real friend. Reuben and his siblings showed Billy the meaning of teamwork and uncomplicated motor skills, as they all captured a cake tin full of wiggly tadpoles, snails and guppies. Back at home, we made playdoh frog statues and sat them on the pondside rocks to keep the taddies company. We fed them frozen lettuce until the pond plants kicked in. We watched them grow legs and lose tails. And every night, we listen as their great-great-grand-froglets ribbet through the sunset.

Finally, there's the inside of the cubby house where we would hide and paint. We hid because the kids next door always wanted to play in our backyard but Billy was terrified of their pure child exuberance. We painted because that's what kids do, and Billy showed zero interest in those peak pre-school painting years. So, when I say 'we' I use the term creatively. For the longest time, I painted and Billy labelled. Over and over. And over and over. The entire carnival of animals from David Attenborough's Life of Mammals is represented on the inside walls of our cubby house. Actually, when I say 'represented', I am also using that word creatively as well. Let's just say that while I was hit with the 'string words together' stick, the fairy holding the visual arts stick must have been off smoking somewhere. I cannot paint to save my life. Thankfully, Billy has a photographic memory, and once we called the brown blob a gazelle, it was a gazelle for life.

One miraculous day, when he was three or so, Billy stuck his chubby hand in the paint tray and made an arc shape in the air. He said, 'wain' in a tiny voice as he waved his arm in the air. I sat with my knees up near my ears (cross-legged in a tiny cubby house) thinking 'Do we know someone called Wayne?' and Billy showed me his multi-coloured hand and waved it in front of my face again. 'Waaaaiiiiin...' he said. I was still going, 'Is he calling me vain? Cramped up in this cubby house? Man, he's tough!' when Billy's hand hit the bottom of the 'creature' covered wall. 'Waaaaaiiiiinbooow' he said, as he painted an arc of colour over the animals. His other hand touched the animals. 'Day haaapee!' he yelled.

He painted a rainbow, and he named it. Not repeated it. He named it, and he talked about it. There is no rainbow in Life of Mammals, he just thought a rainbow would fit the picture. It was the first step in a journey that continues today. The Billy journey, out of himself and into a world where animals need rainbows to be happy.

In four weeks time, I have to leave that rainbow for another child to find. I hope they like it. I hope they feel how important it is. Unfortunately, they probably won't understand that the rainbow is protecting a menagerie of mammals, because the animals look like the marks on the sides of a Quarter Pounder box.

It's daunting and exciting in the same breath, to be moving on from this place. It's autism house. It's where we used the word for the first time. It's where therapy started. It's where we received the diagnosis. It's where we cried and sucked it up and started fighting.

It's time to move on.

We own the diagnosis now. We own the journey now. Unfortunately, we don't own a house anymore... but we're working on it (one trampoline at a time).