Monday, October 24, 2011

Hauling over the coals...

Next week, when we launch on our California driving adventure, I hope to be free of the millstone we have been carrying for the last 12 months.

This millstone started growing in size about 18 months ago, when we realised all was not well in Billy's world. It took a bunch of steroids in December last year, when our family was shoved from our  bumpy but rewarding road, to being on a dangerous, slippery slope.

Enter an express lesson in disability legislation, child protection legislation and the cost-benefit analysis that is a good strong legal team.

This week, the millstone will accompany us to the Australian Human Rights Commission, where it will (hopefully) be turned into dust.

In our journey as a family, we have made a transition between two worlds - from a world where philosophy principally drives action, to a world where necessity principally drives action.

Before Billy was diagnosed, my feet were firmly in the philosophy world. I believed in frameworks, and theories and scaffolds that drove my every decision. I had a rule for everything, and I surrounded myself with people who shared a similar vision. It worked well for me. I built a career being the 'Nanna', the fact checker, the danger police where kids, creativity and scripts were concerned. I believed what I knew, and I worked hard to keep on knowing more.

Then came autism. The thing that shook me out of my ideas about what kids 'should' be able to do, and into the world of what my child could/couldn't do. I couldn't recreate the 100 Acre Wood with my toddler, because he was sifting dirt between his fingers and struggling to poo. I couldn't let my child climb trees with abandon, because his gorgeous, dirty fingers didn't have the strength or dexterity to hold a toothpick, never mind his own weight.

I lifted my feet out of my fantastical pair of philosophical boots and placed them firmly on the ground.

I read, I asked, I cried, I tried. Together, as a family, we learned how to speak differently so our son could speak at all. We rebuilt our living space to extend our son's physical abilities. We opened our house to therapists and psychologists and early intervention workers and doctors and social workers and all the scrutiny they bring. We acquired a 'team' who are with us to this day, guiding us through each new gateway that life with autism builds in our path.

Every so often, I'd go back to the relics of my past, and lament the fact that the platitudes no longer applied to us. Who really cares about interactive drama experiences when your child can't tolerate a room full of kids, never mind the lights off and the contribution of a booming orchestra. 'He's behind you!' and 'I can't hear you' (the mainstays of kid's theatre) became cruel taunts, not invitations to participate.

I'd listen to radio interviews where people talked about parenting struggles and their dreams for their kids, and I'd think 'I wonder if I'll be trying to cajole my kid to play in the school band, cos right now, I'd settle for a valiant attempt at a three word sentence.'

I didn't lament the loss of my theoretical life, though, in fact quite the opposite. Like any parent, I'd been stripped bare by the refreshing reality of child-bearing and given the cold shower of mummy humility. It was no longer about me, it was about my son, my family and the journey we would all make into the future. Add the special needs aspect to our lives and the path looked more overgrown than before, but not impassable by any stretch of the imagination.

This life certainly beats the shit out of arguing for days about whether it was OK to waste food on kid's TV (though I did get quite good at that one... FWIW, the answer is always 'no'), especially because I was rapidly learning that food (the selection of, intolerance to, and subsequent rejection of) was going to be a central issue in our lives anyway. As would, speaking, writing, learning, independence, emotional stability, listening, walking etc etc etc.

Though our choices as parents will always reference the folk we once were, autism is a more powerful master. It dictates choices, it focusses decisions and it requires constant, dynamic attention.

Here's the thing.

I don't think autism is a burden for me, at all. I think it's a hell of a load for Billy to carry and he carries it with grace and the temperament of the Dalai Lama.

To be honest, I have to thank autism for lifting the theoretical veil off my life and forcing me to live in the here and the now. I'm also grateful for the people it has introduced me to, and the amazing capacity autism has for sending chills down the average human spine (good or bad, those chills remind you you're alive).

The burden, the actual palpable weight I carry is the weight of ignorance and intolerance. Each time someone says, 'He is good, for an autistic kid, isn't he?', add a rock. Each time a request for support is met with eyes that clearly have no intention to follow through, add a rock. Each child that is allowed to stare and laugh without an adult speaking compassionately to them about what Billy is doing, add a rock. Each time someone confects an opinion about us based on what they think they see (without checking the accuracy of those thoughts), add a big, fat boulder.

We all want the best for our kids, unless you have some vital part of your soul missing. After living the exposed and examined life we have lived (the same life anyone with a special needs child has lived), to have our motivations reported as questionable, is beyond offensive. More than that offence, it sets a dangerous precedent for other families of children with special needs.

We are fortunate that we can withstand scrutiny. We are not vulnerable. We have some financial capacity and a good grasp of the English language. We are fortunate we work in the media and so have a slightly heightened ability to source and decode information.

For the record, they call it 'special needs' for a reason. No matter how much we want him to, our son will not one day wake with the magical capacity to be like the 'other kids'. No matter how much belief we have in him (and trust me, the belief we have is not quantifiable), the autism will not disappear. He will gain skills and lose skills and heal some and regress some (as hard as that is to write). We will do nothing but the best we can, to make the road as pleasurable and possible for him as we can.

This is our reality. This is our life. We share it with our 'team' and with a legion of similar families. We do not want a medal, and we do not want judgement. We want questions. We want answers. We want respect for our difference as a family. We are an open book, because the choice to be anything else was taken away by three little letters - ASD.

I hope this week, when the dust settles, I hope that we see (once again) that disability laws exist for a reason, that due process is designed for fairness not for administrative neatness. I hope focus is placed on the idea that one should, as we have learned to, think before every single act.

If that is not possible, then the narrative we share with our son as he grows will be a really sobering one, and I don't think it's right to rest until it is altered. To send him forward into a world that says his unique needs come second to theory or philosophy, seems an abrogation of my job as his parent.

I still have my eye on my old fantastical boots, by the way. They are shiny, after all. They're in the shed with my high school report cards and my uni assignments... those things I valued before I stepped barefoot into the real world.

Maybe Billy can wear them one day when he makes his own 100 Acre Wood.

NB. I know this seems crazy to even say, but if you are feeling like commenting (which would be great), please respect that the matters I'm referring to in this post are legal in nature. I do not want to be in the business of defaming anyone or degrading anyone. It doesn't get us anywhere... and it's illegal.

Tuesday, October 18, 2011

I write scripts for a living...

The irony of my career trajectory is not lost on me, now that we live in autism world.

Today Billy and I had a discussion about scripting. I say 'discussion' like it was a calm, rational, civilised moment. Actually, we were driving and I threatened to pull over and not move the car ever again if he did 'Super Why - the Swiss Family Robinson' one. more. time.

When Billy scripts, it's not just repeating. It's not just regurgitating. It's more like joyfully painstaking practice. It's seriously like rehearsal. He starts and stops, and re-starts again. He stutters, holds himself back, trying to integrate the sound effect and the spoken word in perfect timing. His face is in this beautiful, West-Side-Story-Somewhere kind of place, as he masters something that most of us don't even remember happening in the first place. Again, and again, and again.

We have limits on scripting, though they feel kind of arbitrary. They're mainly based around two things - the need to get something done (that scripting is stopping us from completing) or my fragile mental state (see the afore-mentioned pull over in the car moment). Sometimes they are based on the strange looks from Grandma, but I try to wash over those moments with facile statements like 'Ah, life with a photographic memory, eh?' because I do not want Billy to get the message that a strange look from someone is a reason to alter his nature.

I say 'nature' as opposed to behaviour for a good reason.

I seriously know less, in a concrete manner, about autism every day. It's like the more I read, the less I know. I'm a reverse wise old owl. I often feel like we are living in a world of 'outside-in' interpretations of autism (ie. the behaviour maketh the man). There's a plethora of mainstream research seemingly determined to reinforce the idea that if you can change the autistic behaviour you have succeeded, somehow, in changing the child. While I would do anything to make Billy's life easier, I really struggle with the idea that making him behave like the other kids is the aim.

I'd love him to be not sick a lot. I'd love him to have the ability to eat anything he wants and still have his body function. I'd love a couple of hours of non-YouTube related stillness or the ability to hold a pencil without shaking with exhaustion. I would give up everything I value for a calm, functioning gastrointestinal tract and a lack of auto-immune dysfunction.

Do I care about the lack of desire for sleep-overs or team sport... nope. Not a bit. Couldn't give a crap. Why? Because the 'just like the other kids' idea seems as trivial to me in relation to Billy as it did in relation to me when I was a kid.

Billy's scripting drives me bananas some days. It never drives him bananas. It soothes him, and entertains him and engages him like YouTube can.

I wonder a lot about what he can control and what he cannot. I try and think what boundaries I would set if he was NT and whether I should apply those same boundaries given that he is not. Some days I write him a pretty blank cheque for his behaviour, and on other days, I want to write a ransom note.

My frustration, though, is just that. MY frustration. It cannot be my child's fault that I am irritated by some of the behavioural manifestations of his disability. Never. Ever. Nor can anyone else in his life claim that right. Not his family, not his team, not some random grumpy old lady at the shops who thinks he should be seen and not heard.

We are grateful that Billy has the emergent ability to reflect on his own behaviour. We have some breathing room in terms of the sort of behaviour management most kids have to handle. He is generally polite, generally keeps his underpants in the right place, generally gets that Grandma doesn't want to hear those special four letter words you learn from video game play-throughs on YouTube.

We can see that random tears over things he cannot control, frustration that his pleasant walk down the street has been interrupted by a barking dog, deep fear that the baby at the next table might cry... these reactions and their associated behaviours are beyond his control. These are things we need to avoid, manage or suck up and live through.

Maybe that should have been the title for this post - avoid it, manage it or suck it up.

Today as I gripped the steering wheel in that nasty white-knuckle way that the child me observed in grown-ups many moons ago, I wonder was I avoiding, managing or sucking up the real issue.

Super Why is not so bad. Self-calming is a legitimate and valuable tool in the life of a boy on the autism spectrum. The fact that it drives me nuts is a timely reminder of the lot of an autism parent.

Quick trip back in time, to illustrate my point.

I have the great privilege of knowing some beautiful writers, especially songwriters. A lovely old friend wrote a song once, quoting a couple of bits of my drunken conversation. You can find the relevant pearl of twenty-something wisdom at the 1:48ish mark in this video, and it goes like this (for those with time, bandwidth or don't care that much issues): Accept all the things I don't want to accept, and believe in the things that are true.

Some days, in this autism game, it helps to lean on the clarity our twenty-something drunk selves had...

I accept that my son is different, unique, strange (depending on the day) and I believe he has every right to be just that - everyday. I will smile proudly, no matter what. I will speak calmly no matter what (OK, not if he is heading towards a four lane highway or a growly dog, I'll revise this one). I will allow him to be himself, no matter how that looks to the uninitiated.

And I will let him repeat Super Why. Sometimes. Quietly.

I may even keep on driving the car while he does it.

Thursday, October 6, 2011

Hopeful Parents day...

I am at Hopeful Parents today, frantically packing electronic gadgets in preparation for our big adventure.

Click through if you want!

Saturday, October 1, 2011

A new world record...?

I think our family might actually win a world record.

I could be wrong, I'm not certain, but I believe we might be the family that has been to more zoos, more times than any other family. Except maybe the Irwin family, but I actually think we might give even them a run for their money.

We have been (repeatedly) to all the zoos I can think of in our State and the one to the north of us. We are heading to California in a month or so, with an itinerary planned around zoos.

At least twice a week, we are looking at animals in some kind of animal park or zoo. When we are not at a zoo, we are reading about animals, talking about animals, playing with animals or (my personal favourite at the moment) curled up in bed watching David Attenborough documentaries on the iPad.

We do engage with other things (that pesky mater of schoolwork, Thomas and his friends are still around, there's the countdown to our trip to be considered) but we frame our life around animals at the moment.

You may think I'm crazy. After all, the aim is to have a child that's as well rounded as possible, right? We should be encouraging our child to touch on as many subject areas as possible, right?

From my perch, high atop autism world, I say... yeah, right.

In the most loving, least cynical way... yeah, right.

I have mixed feelings about the issue of neurodiversity. I'm all about acceptance. I'm all about the world taking my son, and everyone else, for exactly who they are. And, at the same time, I am pitching for him to be able to live in the world in as functional way as he can.

With that in mind, my devious master plan for Billy is to use his loves and abilities (perseverations, if you will) to gaffer tape him to the world in a practical way.

When he was very young, we sucked the marrow out of every last minute of Thomas the Tank Engine. We learned colours and numbers. We developed language, we considered emotions, we made models and food and toileting all Thomas related. We travelled to see Thomas, we purchased the Island of Sodor over and over and over, we read and watched and talked Thomas. Thomas came with us to scary places. Thomas curled up in bed in hospitals. Thomas smoothed the way into the edges of street parties and restaurants.

And with Thomas in hand, we managed to kick start therapy, start pre-school and school, slowly take steps into serious kid culture like movies and birthday parties. Big steps... huge steps that would have been so much huger without our six wheeled friends.

The great thing about trains is that they brought us in contact with other kids. We stood near them at train tables in toy shops. We rode on the back of trains with them. We saw a couple at train shows (in between the adult collectors and trainspotters).

Now that Billy is almost eight (aaaah), animals have edged their way in front of the engines. So instead of smoothing our journey into the world with songs about useful engines, we're carrying a well thumbed copy of 'What Bird is That?' and making documentaries with the video camera on my iPhone.

Animals have (similarly) brought us into the world of children in a very useful way. In order to see the gorillas at the zoo (for example), one has to stand quite close to quite a few children. The zoo is generally full of children, of various ages, in various moods, all with very little desire to get up in Billy's face and drive him out of his comfort zone.

Zoos have provided learning, and comfort and joy to all of us. And when you are onto a good thing, go for it, I say. In fact, in autism world, when you are onto a good thing, you kind of don't have much of a choice.

Hence, the world record for zoo attendance. And a minor record in Thomas engine ownership (I believe we may have more Percy the green engine toys than anyone on planet earth).

In Billy's life, I hope we set more records. I'm pretty sure we will. I feel this because whatever our boy does, he does with passion and commitment. Like many young autistic kids, he does not waste his time with stuff that doesn't set his brain on fire. When he likes something, he loves it. He collects it, he owns it, he inhabits it.

We are fortunate he does not love farm machinery or drum kits or string, as some kids we know do. We feel deeply fortunate he does not love violent video games or superheroes. We see that he gets both enjoyment and learning from the things he loves, and so we support him and use those things as developmental leverage. Inside-out, kid-first, Billy-led development.

Many years ago, when we could see that our infant son had a spectacular memory for letters, yet he had lost his ability to use words, doctors and therapists told us he had 'splinter skills'. They said, 'do not be excited that he can locate letters accurately. It's a splinter skill. Totally useless.' Their advice didn't seem right, and it didn't seem fair.

I can honestly say it was not good advice. He may have been displaying splinter skills (whatever they are), but they were useful skills. We took his ability with letter recognition, and worked hard to translate it into a working knowledge of phonics. We matched the letters to trains, and the sounds to songs and subtitles on DVDs. We immersed ourselves in his interests and abilities, and it paid off in spades.

It continues to pay off, every day.

Through animals, we learn about taxonomy, hierarchy, biology, mathematics. In zoos, we consider ecology and people management and the vast overpricing of snack food. We observe the way animals work, the way public space operates and the way people make up crap when they are trying to impress their children with animal 'knowledge'.

In paying heed to Billy's passions, we legitimise his life journey.

I do not believe any child should be forced through arbitrary hoops, simply because history has laid those hoops for others. When autism is added to the picture, the wisdom of the arbitrary hoops is even less obvious. When you see that your child is not simply bored by the expectations of the system, but they are also threatened, bamboozled, disregarded... making a different choice doesn't seem such a big leap.

It's not just about schooling, it's about living.

We have no political agenda leading the decisions we make about our child's life. We have only love. We are not trying to make a point, we are trying to stay balanced. We are not trying to challenge anyone else, we are simply trying to keep ourselves happy.

And if finding happiness also secures a solid future, and a couple of random world records, so be it.

And if I can get myself some recognition for my encyclopaedic knowledge of potato chips and habits of the lesser Kardashians, the world order will be righted.

Splinter skills. Pffft.