Wednesday, July 28, 2010

School is tough...

I could kind of leave it at that... but I won't.

We've just gone through our yearly parent-teacher meeting, and it was a rough process. I'm still trying to unpack the whys and the hows and the wherefores. Indulge me while I do it here, and maybe we can find something together.

Our take on our child is... he's lovely, he's smart, he loves learning, he does not have any real challenging behaviours, he loves new experiences and he needs preparation for them, he understands and talks well yet struggles to do both those things in a socially pressured, fast, loud environment. Oh, and he's autistic.

A bureaucratic take on him would go like this... diagnosis: autistic disorder - high functioning, language scores above 70 and in normal range, IQ scores in normal range with over 30 point difference between verbal and performance IQ, fine and gross motor delay, attention deficit issues.

Our wonderful school is the absolute opposite of a judgmental bureaucracy, but still... you getting the idea...?

We made the decision to 'mainstream' him in the most liberal, forgiving, creative environment we could find. In many ways, his schooling journey has been a miraculous one. Our little boy who would turn and run when he saw a child his age, is now calling other kids friends. He goes to (and looks forward to) birthday parties. He is developing a real understanding of the subtleties of social behaviour in a way no therapeutically supervised social skills group could have.

However, mangling the words of whoever Don McLean was quoting... the world was never meant for one as beautiful as Billy.

School, as awesome as it is (and it is awesome) is exhausting for Billy. It sucks out his energy, while replenishing his mind. The friends he craves (did I ever think I would write that?) require such mental effort to decode that he's often found weeping while playing with them. The sounds they make, more often than not in pure unadulterated joyful play, cut like knives through his brain.

So WTF-ing hell do we do?

It has not been a natural easy path to find, but we've agreed on a few things this week.

  1. Billy will do short days (in Australia, afternoons at school are often full of the kind of free form chaotic experiences that beautifully concretise learning for NT kids, but unwind a lot of the gain for autistic ones like Billy).
  2. Billy will start early and have some one-to-one time before school with his teacher.
  3. Billy will have an aide, as many hours as we can fund.
  4. Billy's teachers (and said aide) will do some ASD training and agree to use some sensory and ASD learning aids
  5. Billy's Mum (that's me, hi!) will reinforce whatever's going on at school in one-to-one sessions at home.
  6. Home and School will communicate in written form, and meet monthly.

I'm aware we are lucky to have a school that will agree to these accommodations. I'm also aware they are not rocket science.

It's so easy to forget the fact that while I am all wrapped up in writing claws and thera-putty, other people  haven't even heard of them. Sometimes the depth of information sharing/educating required is overwhelming, and I struggle to find a place to start.

I'm thinking, because we are in election mode in Australia right now, that we need to look at these things  in a slightly different way. I was listening to our Prime Minister (bizarrely) 'announcing' that if we return her government, they will give children under six with disabilities up to $12000 in EI services. Awesome, except that her government does that right now... not sure how that might be different just because it's happening after the election... but, that's not my point.

She said that Early Intervention was to 'prepare children with disabilities for school'. And I thought, that's great, but what about preparing school for the children with disabilities?

Why don't we have a scheme, funded by government (wow, that would be cool) or by the private sector (technology/media/gaming... the places many kids with disabilities like autism may end up actually sharing their skills... just throwing it out there) for in-service programs for teachers and other education professionals, where they are expected to skill themselves up in special needs. Maybe employers could go too. Maybe there could be cool programs for NT kids to go find out more too...

The education system (and world of employment) is going to be, whether we like it or now, increasingly populated with differently abled humans. There will never be the resources (nor the desire, hopefully) for fully segregated 'special' schools for all people with special needs. Ability is a spectrum, needs are variable and life is a rich tapestry... so, what are our plans as a society to 'move forward' (to borrow a phrase from the election campaign) together.

I'm thinking... How about the community adapts and educates itself instead of expecting the SN kids to carry the burden of educating everyone else? Maybe we could accept that disability happens, and get pro-active? How about we expect that of each other?

In the process of showcasing the innovations that parents have discovered to facilitate the mainstreaming of their SN kids, someone mentioned something really important. She reminded us that we should not enter into discussions about our kids with a deficit frame of mind. They are not less than other kids. They are kids. People. With every right to an education experience.

I love that advice. And I tried it out yesterday. And it worked. We made positive changes on a small (Billy sized) scale, that benefits him and his peers.

Now I need to take my writing claw to the election campaign...

Friday, July 23, 2010

The impact of words...

We've been trying to get Billy to have more understanding of the impact of the words he says.

Might sound strange... he's saying things, choosing certain words to say... surely he understands what those words mean, otherwise he wouldn't be able to choose them.

Yes, and no.

Billy is one of many kids on the spectrum who uses a LOT of echolalia in his speech. He always has, and at almost seven, he's still doing it. He's never really been much for the immediate echolalia, but he's a cracker at the delayed version.

He has an extraordinary auditory memory. Truly, stunningly, spectacularly extraordinary. And he draws on that memory to supplement and develop his speech.

It works out pretty well, a lot of the time. He can pull out relatively appropriate phrases quite often. People comment (a lot) on how polite and well mannered he is, on the basis of his responses to questions in public. Only the Silent Partner and I (and Billy... maybe Scruffy... not sure how extraordinary his doggy language is) know the truth.

We look at each other and think, 'Thomas the Tank Engine' or' 'Bo on the Go' or 'Grand Theft Auto'. Actually that's where it gets hairy.

Let me first explain why an almost seven year old is playing Grand Theft Auto. He saw the crashes. You may have seen his contribution to YouTube's crash collection. We turned the volume down. And we're not the only ones. Although that other kid is waaaaaay nicer than Billy is... let's just say pedestrians, lamp posts and vehicles generally are not safe in Liberty City.

We chose to turn the volume down because a few seriously ghetto phrases were coming out of a white, Australian boy's mouth. It is not a good idea to say, 'Get out of my way, sucka' to one of your classmates. Despite the fact that it will almost invariably have the desired effect.  It is offensive, inappropriate and unnecessary.

The irony of this little learning journey is not lost on me, this week... when, apart from ill-informed comments about children with special needs needing to be accommodated 'somewhere else' until they are ready to be mainstreamed, the Australian media also let the phrase, 'all boys are retarded' go by without much fuss.

Autism brings with it a life full of 'teachable moments'. I guess an on-air TV career might not.

Wednesday, July 21, 2010

I surprised myself today...

The 'integration of children with disabilities' controversy continues here in Australia.

Today, it appeared in a number of media formats, including on ABC radio in Queensland (one station in our national broadcaster's network). If you click on the link above, you can listen to the interview.

In response to what felt like an unusually aggressive tone from a journalist I thought was quite smart and fair, I wrote this:

In response to this conversation, I would say... life is a challenge.
Being a teacher (as I am, OK, I was a teacher... young, needed the money, you know what it's like) is hard, on a minute by minute basis.
Being a parent of a child with a child with a disability (as I am) sucks too.
Wouldn't it be lovely if all of our lives could be lived with no challenge in them?
Poor children with no educational, medical or behavioral worries (I have not met many of those, BTW). They should be able to live their lives without ever meeting anyone different to them, shouldn't they? They shouldn't have to learn about difference or disability? Why taint their perfect lives with something inconvenient and confronting? Who knows, they might actually learn some empathy or life skills.
I hardly have to add that I'm being sarcastic do I?
Before my son was diagnosed with autism, I was afraid of disability too. Who isn't? But it happens. Like illness and death and elections.
Tolerance is a bitter pill for almost all of us to swallow. Only some of us have a choice about it.
The journalist was talking to the (quite astonishing) mother behind a rapidly growing protest movement and the head of a state teachers union. I was responding, mostly to her unstated (but clearly implied) agreement with the idea that 'normal' students have resources that are naturally owed to them, taken away by their peers with disabilities. 
Instead of teasing apart what life was actually like in an integrated classroom (something along the lines of what I expected of the journo in question), it felt like she wanted to force the mother of a child who had been integrated well, to... change her mind about the benefits of inclusion/integration. That wasn't going to happen, so she played the interrupting cow game (not that I'm calling her a cow... I'm not... but she did interrupt... a lot).
The surprise, though, came in the clarity in my mind as I composed a reply.
I hadn't really thought about it before, but in most people's lives, tolerance is a choice.
When you have to face some kind of adversity - chronic medical condition, disability, financial threat... you lose the right to choose. Add that threat being aimed squarely at your child and most folk don't even pause to consider. 
I can't be sure, but I think that's why the whole 'those children shouldn't be upsetting my child's natural trajectory through life' thing got so many of us instantly riled. Certainly, it's the thing that is sticking with me.
At the same time as all of this is going on, we (as a family) are dealing with challenging stuff at school. Really challenging stuff, that I'm still not sure we can get through. 
I'm finding it very hard to accept that people don't see Billy's condition as really good reasoning for accommodating his needs. I get that it's inconvenient, and there aren't enough hours and it requires more flexibility than usual but... it's real. And wanting it not to be, or not having enough time to understand or act on it... won't make it any more real.
We don't have a choice to be tolerant of autism. Why is it people who don't live with autism (or any disability) on a daily basis think they have a choice...? 
There is no mythical place for SN kids to go for a 'suitable' education. There are a series of largely unsuitable choices, and we as parents seek the most suitable one - by reading, and interviewing, and visiting, and researching, and talking, and questioning, and comparing and rejecting, and hoping, and trusting. 
No-one wants to send their child into an unsuitable environment, for school or for any other activity. Least of all, a parent who has spent a couple of years, dragging their already struggling child to therapy sessions, early intervention, social skills groups, doctor's appointments, specialists, screenings, assessments... in the dwindling hope that things might get a bit more 'normal'.
As a parent of one of 'those children', I can reliably report that it's very hard to trust. It's very hard to accept. But it's not very hard to be tolerant. 
That comes easy when you meet the eyes of other parents in waiting rooms. It comes even easier when you see other kids in therapy doing their absolute best to master something that didn't even blip on the radar of their 'normal' sibling. It stops being an issue when you see the light switch on in the eyes of your pre-schooler as they hit some obscure milestone the twelve month old next door thinks is a game for babies.
Suck it up, 'normal' folk. Take a real (or a virtual, if you must) walk on the road less travelled - tolerance-wise. Things like empathy and sympathy and understanding. They're life abilities, renewable resources (eco-friendly) and they're things the world needs a lot more of anyway.
You'd be doing us all a favour. And you might surprise yourself into the bargain.

Monday, July 19, 2010

At the zoo...

School goes back tomorrow, which never thrills me. In response, Billy and I spent a happy day at the zoo today.

Since our Wizzy World epiphany, I'm less worried about crowds and noise on our adventures. And just to back me up, the city gave us a bleak, cold, deeply unattractive day - the sort of day when sensible people stay home with hot chocolate and dvds. Us, being deeply unsensible (a-sensible? anti-sensible?) folk... hit the wet roads. We didn't even set the sat-nav. That's how we roll.

Actually, if I had set the sat-nav to get to Taronga Zoo, a place Billy and I have been at least 200 times in the last three years, I would have myself committed. I'm getting loopy and forgetful in my old age, but hopefully, not that forgetful.

Before I get to the point (and I promise there is one), let me explain why the zoo is such a popular destination for us.

It's all about special interests. For those of you on the beginning of an ASD-centric journey - listen up, for this could be a model for how part of your future will be built. More experienced players can just sit back and smirk. I am confident I am not going to reveal anything too unique.

It's all Pixar's fault.

First, there was Finding Nemo. In the deep dark hours (for us the year and a half between 18 months and 3 years), there was a LOT of Finding Nemo. We avoided the sharks (too scary), we skipped the bit where the submarine exploded (too many sharks, and also very loud) and we loved the school scenes and Dory (who popped in and out of shot so much, she pleased our little visual stimmer no end. On that note, do not get me started on the turtles whooshing through the East Australian Current).

In a cute side story to the side story, The Silent Partner (previously known as He-Who-Thinks-Blogs-Are-Stupid... he doesn't think they are stupid, I was projecting) and I saw Finding Nemo when I was pregnant with Billy. Imagine my joy as the fertile, protective Mama clown fish and all but one of her progeny were mauled by barracuda in the first five minutes of that one...

Back to autism and Pixar. Because of Nemo, Billy loved fish.

So we bought a marine aquarium, and stocked it with Nemo, Dadda (Marlin) and Dory. Like the rest of Sydney, if we were to believe the exasperated fish shop sales folk.

Then we went to a very small (read, fairly unpopular) public aquarium here in Sydney. I won't add a  link. Don't want them to sue me for saying they are unpopular. Suffice to say, it's in a place where only big Sydney ferries go, and is close to a lot of good ice cream (both awesome bonuses).

There, we bought a dvd of Barrier Reef footage called Coral Sea.  It had subtitles. The beginning of a lifelong (I can confidently predict) love for Billy. He seriously buys dvds on the basis of whether they have subtitles or not. Within two viewings, he knew all the fish.

We were going to need a bigger aquarium.

We started going to the Sydney Aquarium, but... it was indoors, seriously busy and full of hidden hazards to the autistic (pump noises, darkness, glass bottom rooms and serious - Harry Potter soundtrack on 11 -  muzak). Too much. We backed away.

Where else could he see creatures, without feeling quite so assaulted (in a sensory sense)?

Taronga Zoo. Outside, lots of quiet spaces, a cool train running from one end to the other and a Sky Train as a bonus. Our first visit was marred by over-eager seagulls (stealing our chips and squawking, both cardinal sins in our family). We persevered. We had to, because I had already bought the first of many Friends of the Zoo yearly entry passes.

And oh, how grateful we are to Taronga Zoo.

There are animals there. Billy has a personal relationship with all of them. He knows (but thankfully isn't too distressed) when one of them moves enclosure. He knows what they eat, where they are from, who their close cousins...

There are LOTS of kids there too. And that's why we love it so much. When I say 'we' I mean the tall people in the house. Because we (tall folk) knew that we could get him (short, cute autistic fella) there by promising all his animal friends. We took the video camera with us that first time, and he's watched the video complete with annoying Mummy-as-speech-therapist voice over so... he knew all the animals very quickly. Over three years, through rain, shine and steam (Sydney summers are nasty), Billy has gone from swerving in a 10 metre circle around other kids to... well... tolerating Wizzy World.

At the zoo, he talks to the keepers. He corrects people ('Look at the lizard, Baby...' says an unsuspecting mother. 'Um... it's a Fijiian Crested Iguana,' says Billy, while slinging the baby the evil eye.

Well, the kid-hating's not completely gone. That would be one of those 'Iguanas Cured My Son's Autism' stories, and we all know they're a bit iffy. Yaks, maybe...

Oh no... what was my point?

Ah yes.

At the zoo today, we passed three separate children who were undeniably autistic. One angel faced child maybe a year or so older than Billy, flicking a well loved teddy bear repeatedly in front of his eyes and making one word requests. A two or three year old with his hands planted firmly over his ears as he shared his stroller with a giant bag of potato chips. And a very, very loud and large pre-adolescent, with no social or personal barriers to speak of...

People say the rising autism rates are because of better diagnosis - sharper teachers, more canny doctors (seriously, are you kidding me? where are they hiding these clever folk?)

I'm about to start my 43rd year on this planet, and in the last, oh, three of those years, I've seen more randomly placed (like not at school or sitting in the ST's waiting room) autistic people than in the four decades before.

I really hate to say this, but I think history will mark this period - the rise of autism, once we understand more about what the freaking hell is going on.

And, it will mark the rise of Pixar, whose stunning work I am hoping to take in in 3d this week... when Billy (the cinema hater.. another blog entry one day) goes back to school.

Told you I'd make it back to where I started!


Friday, July 16, 2010

Having one of 'those children'...

Last weekend, a person employed for her loud and impulsive voice made some statements on Australian television about mainstreaming children with special needs. The comments were, unsurprisingly, reactionary and deeply offensive to people who have, or care about, SN kids.

A campaign started immediately, to get an apology from the woman who made the comments. It was run, astonishingly well, by parents and within a couple of days, there were 1700+ friends on a FB page. They got a half-arsed Twitter-pology from the woman, blaming them for 'misunderstanding'. Minor setback. They received an apology from the television network involved. Huge win. They are still working on getting a on-air apology from the woman herself.

All in all, a nice resolution to a serious storm in an important teacup.

The real revelation for me, though, comes in the woman (known as a social commentator)'s use of phrases like 'those children'. 'Those children' need to stop taking valuable teaching time and resources away from their normal classmates. 'Those children' need to be looked after somewhere else. Mainstream school is not the place for 'those children'.

You hear it again and again. And a surprising number of people are in total agreement. Even more would agree, but know it's not PC to say it out loud.

But here's the thing. I have one of 'those children'.

He, as you know if you are a regular reader, has a lot going for him. He  has a ton of capability and a very high IQ. He keeps himself to himself at school, and has never thought to tease, bully or rely on any kind of violence to resolve conflict. He knows more about some things (animals, in his case) than most of us could dream about, and he has the passion, drive and unique turn of thought to turn that knowledge into something truly world changing.

Sounds like the perfect kid, right? The sort of kid any teacher, child, school community would welcome.

Like any parent, I dream about his future, and I want the best for him. I try to make the best decisions on his behalf in regard to his education, his health, his emotional and social development. Like any parent, I believe my son has the right to be exactly what he wants to be - right now and in the future.

But, he's one of 'those children'.

So, I make decisions for him based on his individual needs. Here's what I know.

  • he struggles in school, despite his intelligence
  • he requires a lot of one-to-one attention when it comes to academics, not because he is stupid, but because, to him, the school environment is not conducive to concentration.
  • he needs adults with compassion, understanding and experience around him to decode the subtleties of the world with him.

These are not qualities that gain him entry to 'special school'. His IQ and language scores are way above the cut off for those settings, and there are hundreds, if not thousands of children in this State alone waiting for access to disability/autism specific school settings. Children with more profound and debilitating clinical presentations than my son.

It may surprise people who do not have children with special needs to learn the following:

  1. There are more of 'those children' than there are dedicated educational placements for them.
  2. 'Those children' range in ability, temperament, socio-economic status, skill, race (just like 'the other kids')
  3. Many of 'those children' have every chance of being fully fledged, employed, tax paying, world changing members of society, with the right support. 
  4. Peer modeling, trained and skilled educators and inclusive curricula go some way to providing that support.
  5. Children, unlike adults, acknowledge difference and in satisfying their curiosity about their differently abled peers are much more likely to live a life free of ignorant discrimination. Mainstreaming isn't just for 'those kids', it's for the rest of us as well.

To live a life where we constantly work toward reinforcing the success of those with the least impediments to that success, is to deal on a level of such shallowness that, to me, it's hardly worth trying. Where's the challenge in ensuring the inheritors of the universe actually take control of the moon and the stars? Can we really be proud, as a society, when the children of the able-bodied, wealthy and successful  themselves go on to be... able-bodied, wealthy and successful?

Before I had my son, I thought about all the great things that a child of two relatively sane, stable, capable and happy individuals could achieve. I planned for those outcomes, making career decisions and moving house to make those things possible. As all parents do, to the best of their ability.

Even though my son has a disability, I have not, and will not, alter my strategy. The journey is unique, but the destination (his future as an adult) is the same as any one else's.

I didn't expect to have one of 'those children' but now that I've got him, I'm sure as hell not letting him loose to wolves like the brassy 'social commentators' on network TV shows. I do not work as hard as I do, on a daily basis, to provide you with an easy meal.

All power to the parents behind the challenge to this TV show, and all the other media outlets who let this stuff go through to the keeper.

And to the people who make their careers by punching at easy targets... I truly hope a shallow life is enough.

Tuesday, July 13, 2010

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.

Monday, July 12, 2010

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...

Wednesday, July 7, 2010

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?

Monday, July 5, 2010

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.

Saturday, July 3, 2010

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.