Monday, June 27, 2011

Accentuate the positive?

Next week, we get the results of a new set of assessments on Billy.

I hate these things. Hate them. It's nothing to do with Billy, or the professionals doing the assessments. I hate the assessments. I know he's delayed/disordered whatever you want to call it. I know we've got a long road ahead. I have known this for a long time, and I will know it for a long time to come.

Cheers, Universe.

The receipt of pieces of paper, carefully read through and interpreted by compassionate professionals, photocopied in advance for distribution to a selection of other professionals is seriously about as much fun as the flu. Without the resting and watching TV bit.

We're doing these assessments so that, should we make the decision to put Billy back into the mainstream school system, we have an 'accurate' picture of his capabilities.

Can you hear me throwing up in my mouth a little? Seriously... in what strange corner of the universe is standardised, normative testing that accentuates what's not possible, an accurate picture of a child's capabilities?

I see it's necessary. I really do. I get the square peg part. It's important to now 'how' square. What I don't like much is the round hole. I don't like working off a deficit framework from the starting line.

Here's how it seems from where we're standing (or sitting... or bouncing, if you are Billy).

Let's make a list of all the things that a special needs kid cannot do, and focus on how to get them to do those things. Let's use expected milestones as 'normal' (nice, comfortable, expected) and the list as the departure from that nice safe place. We'll drag the special needs kid from the scary deficit place to the expected, normal place. Get it, SN kid? You are not right. We need to fix you. Feel good now? OK, let's get started on your education.

I'm being defensive, for sure. I'm annoyed about being backed into corners as a parent. It just doesn't work for me that I am constantly encouraged to 'fix' my kid. That he's a set of goals and aims and things to change. His life has a sub-text that doesn't feel healthy. And I'm not talking about his health... It's easy to get yourself in a bit of a whiny funk, here in autism world. I don't like to hang around in this place for too long, but while I'm here, I'd like to have a good look around.

Here's a thought.

Instead of giving children with special needs, standardised testing to see where they fit along the spectrum of normal, why not flip the testing on its head? Why not come up with a test that assesses the child's strengths and uses those as guidelines for educators?

Why not say to the system, here's a kid who knows everything about gazelles. He's seven and he knows about 30 species of gazelles... How can we use the skills, processes and abilities that built that list of gazelles and apply it to number facts or literacy? He's also really good at remembering things - spookily good. So how can we use that phenomenal memory to his best advantage? He's also brilliant at spelling. What is it about spelling that comes easily? There must be some way we can unpack that and use it to help him with science, or PE? Let's not try to transfer skills from one topic to another, let's really look at the thinking and learning processes that make this kid succeed cognitively.

While we're at it, let's think about using these processes to get some context on his inability to focus in a busy classroom. There must be a way we can compare hyper-focus and hypo-focus and come up with some tips. And, that whole sound sensitivity thing... that must mean something positive too? Maybe it helps him hear more detail as well.

Why don't we do this?

Is it too hard? Is it too whacky? Do the relatively small (though steadily increasing) numbers of children with learning difficulties make it not worth the research/time investment?

The cynic in me says, we can't do this because no-one knows enough about autism to do it effectively. The dreamer in me says, surely we should give it a go.

Wouldn't it be awesome if your kid could walk into school with a set of positive statements about who they are and what they can do? Wouldn't it be great if autistic kids were considered (and actually treated as) an asset to a mainstream class? Wouldn't it be brilliant if they felt empowered to use their uniqueness, rather than morph it into a version of 'normal' for six hours a day (and then pay the price for the other 18 hours)?

Let's face it. One in fifty-eight boys, one in a hundred kids with autism... lots of classes are going to have lots of ASD kids in them. It would make a lot of sense to see those kids as something other than a drain on resources and a challenge to staff equity.

For every one good story of mainstreaming, there are a hundred horror stories. That (as unreliable a statistic as it is - shoot me, I'm blogging not writing government policy) is an ugly scenario. Go strike up a random conversation about education with any autism parent with a mainstreamed kid. Actually, strike up a conversation about education with any parent. Then find your legal drug of choice and take it. You'll need it.

I know we are lucky to have a kid that has the potential to be mainstreamed. I also know, as we approach a half a school year of homeschooling, that he is a challenge and a half. He is funny and charming and clever, and he needs constant redirection and reinterpretation - even at home. He's not going to magically learn the skills he needs to learn in a classroom setting. He has a neurological disability that makes these skills nigh on impossible. He needs support to learn. he needs learning support. I have very little confidence that the mainstream system can support his learning needs.

The system is not giving me anything resembling confidence by making me stack up my kid's deficits against a list of 'normal' outcomes just so he can be placed in the appropriate box. Or hole, as the case may be.

While we were on holidays, I watched Waiting for Superman, cos that's the kind of education nerd I am. I'm not American, and I don't feel like I should weigh in on how the American education system is or isn't working. What I will say is, that film scared the be-jiggers out of me. It's one thing to contemplate a system that is not addressing the needs of the many, but another entirely to think of how the few are handled. If we base continuous improvement in our education system on scores, on test outcomes, on measurable data, how do we cater for those whose cognition, expression and learning being is not fairly measurable?

For now, I will slather myself in sunscreen and pretend I'm still at the beach (even though it's grey and 10 degrees Celsius outside). I will force my senses into denial, and perhaps my brain will follow. If it works for the systems we are forced to abide by, then perhaps it should work for me.

But before I sink into a place where only chocolate will do, Billy would like to make a(nother) film about gazelles. He has storyboards to create, voiceover to write, sound effects to create, supers to consider. Yes, he's seven... but he's clever like that.

Monday, June 20, 2011

It's all about love...

We're at the beach this week, enjoying nature's OT clinic and taking on the odd zoo and theme park (as is Billy's wont).

While our holidays are definitely not what we see the 'average' family experiencing, they work for us, and we all love them. We visit the beach a lot, we see animals a lot, we see family as much as possible. We eat a lot of the same foods, we stay in the same hotels, we buy the same toys over and over.

What's interesting, is the effect these holidays have on Billy.

For sure, we are fortunate. Billy is a child who can cope with almost anything if he has his Mum and Dad close. He may not cope with it in the same way other kids do (I don't see many NT kids flapping, dancing, repeating TV shows and retreating into the world of favoured baby toys), but he definitely makes the most of the new.

All through his life, we notice gigantic leaps during and after holidays. Language leaps, cognitive leaps, behavioural leaps... hell, Billy will even eat new foods his grandmother gives him on holidays. In my mind, this alone is enough to call in the Vatican. It's like the relaxation, coupled with the security of Mummy and Daddy 24/7, added to the shock of the new, equals the permission to grow.

As he gets older, we see that growth in a very different way.

At two or three, it was all about the 'normal' moments. We counted the 'normal' approximations as the successes, and celebrated a day that had more normal than 'not'. We saw him take on new skills and abilities and we thought that meant the older, different ones were outmoded.

At four, five and six we saw his courage build, his flexibility improve and his determination settle at his very centre. He found a sense of humour, a set of passions and a love for achievement. We also began to see autism as normal, and the rest of it as a bonus.

Now, at seven, we are revelling in the last moments of childish freedom. We can see the eyes on him, both child eyes and adult eyes. We can see the acknowledgement in those eyes, when they realise there's something 'going on'. We see the divide in the owners of those eyes - some smile in recognition and acceptance, others step backwards lest the disabled boogies journey up their noses.

Billy cannot fully see those eyes yet. He is deep in the moment.

He can see the kids playing nearby, and he wants to play too. He does not notice their confused (or cruel) stares as his arms and face react involuntarily to the movement of other kids' games. He doesn't understand the meaning of the cruel words they mutter, and even if he did, they come too fast and in a soup of atmospheric sound. His processing skills deliver him a small mercy.

He is tall, but still child enough to be overwhelmed by the beauty of the holiday experience. He is bright, but still simple enough to be allowed to put his foot down in childish refusal. He is one step away from being expected to handle more than he can understand.

There have been moments over the last week where Billy has wrestled with the inappropriateness of his feelings, and lost his way trying to understand why things felt too hard. He has stared into the upcoming minutes, and freaked at the fact that he has no idea what's coming next. He has wrestled with the visit of a relative, knowing he wants to see them, but not knowing what their presence will bring (or what presents they will bring).

Twice on this holiday, Billy has burst into tears at the beauty of love. Once was during a viewing of Lion King 2, when two characters showed they loved each other in flashback. The other was when we found a giant love heart drawn on the beach and Billy was moved by the enormity of the sandy gesture.

It was both beautiful and heart-wrenching to watch. We were led to believe that our autistic child might never understand love. The doctors said he is likely to live his own life, without the need for others to buoy him up. We know, for sure, that this is a crock.

Again and again, we see that autism is not framed by the things a person cannot do. It is about the impediments that stop a person doing or expressing things. If we work on the impediments (external and internal), we enhance the possibility of achievement. If we re-evaluate our perception of achievement, we enhance the possibility of happiness. The hard part is understanding what can be worked on and what is immoveable.

Except, as I learned today, where leaping dolphins are involved. Am I the only one who can't hold back tears at the Sea World dolphin show? I'll be buggered if I understand what that's about.

I hope if we keep working on our communication skills (and maybe watch Lion King 2 together), Billy may be able to help me understand.

Wednesday, June 15, 2011

Back among the gene pool...

We're back in my home town this week for a short break, and it's lovely.

It's lovely to see that Billy is able to be nice to his Nana. It's lovely to see an 83 year old woman open to understanding autism (when her every instinct is to say, 'why are these kids so rude?') and a 7 year old sound sensitive boy understanding why he has to talk louder sometimes. It's lovely to catch up with old friends, even if I'm carrying around a bunch of guilt for all the old friends I am not finding the time to catch up with...

As always, though, there's an autism theme to the trip.

There's an arm of the autism community, and a headless torso of the wider community that will insist the only reason there are more autistic kids is because there are more autistic kids being diagnosed. That doctors are cleverer (ooooohkay), and teachers are cleverer (yeeeeeaaaah) and that these kids have existed forever, they just flew under the radar.


I'm a small sample, I'll admit. Though we are a big Irish Catholic family, so technically, I'm not really as small as all that. I'm not a study, and there's no control and no-one's documenting systematically. I'm not repeatable (thankfully), and I can't even claim reliability since the senior brain kicked in.

But here's what I've learned in my hometown induced analysis of autism statistics.

There are many, many more autistic kids than there were thirty years ago.

There are three in my immediate family. There are a few in my extended family. Of my school friends, there are five with stunningly beautiful fully diagnosed ASD kids. Of my siblings' school-friends, there are four ASD kids. Of the kids I grew up with, there are three offspring with ASD diagnoses.

Back in my hometown, I do not believe there was an environmental insult of grave Chernobyl-type proportions. I do not remember an outbreak of some debilitating disease that could have impacted so heavily on our kids biology, neurology or any other -ology. I do not recall a generation of distant mothering or obsessive kids influencing each other to be odder than normal.

I grew up in a fairly standard city, in a fairly standard state, in a fairly standard country. Whatever that means.

In case I haven't said it clearly before, I believe there is more autism around. Full stop. Period (which really means something else, reproductively, in Australia... maybe everywhere else too). End of story.

There are no autistic people older than me in my family, although there are quite a few geniuses, socially inept folk and vast collections of obscure objects. These things appear in different, discrete individuals. These individuals have definitely bred with slightly quirky individuals, and compressed the quirk, and therein lies part of the genetic ASD quotient, for sure.

However, from zero in one generation to fifteen in the next... that's a hell of a leap.

For the uninitiated, it's worth making something clear about autistic 'traits'.

We are not talking about something that makes you a little odd - not pen clicking or cheek chewing. We are not talking about liking sci-fi or video games to the exclusion of other (more physical) pursuits. We are not talking about being a bit shy, or wary of crowds... though all of these things can, indeed form a part of the picture of an autistic person's life.

We are talking about challenges that frame and often debilitate, how someone sees themselves and how they are capable of interacting with the world. We are talking about skills and abilities that are missing, disordered or un-masterable.  We are talking about a totally unique way of operating. Not something you will 'get over', not something you will 'get used to' and be able to change behaviour, not something you are 'making up' for convenience or type A style dominance.

Therapy (in my mind at least) is there to open the paths of self awareness and raising the possibilities of self regulation. It's not about normalising. It's not about changing. It's about managing, understanding, being actively willing and practically able. Not about aiming for same, but working on happy.

I was never a social butterfly. I was prone to a bit of encyclopaedia reading. I was able to recite long volumes of meaningless prose. Am I autistic? No. Am I a part of the make up of my son's autism? Absolutely. Does that deny the validity of his diagnosis or the multitude of diagnoses around him? No way.

It's popular language right now, but for what it's worth I believe my child is one of many canaries in the coalmine-of-now. I do not know what kicked us into this state, but I do believe we are in a 'state' (and I say that with all my emergent old lady passion). As a generation, we are having a 'turn'. We are in trouble.

I love my boy more than anything on this planet, don't get me wrong. He is awesome, and is (thankfully) able in many ways. He is (thankfully) fortunate in many ways. However, if he was pushing me down a hill in my wheelchair in 30 years time, and a baby cried or a dog barked, I would be a goner. It's a sobering thought, really.

If that is the ending to my story, I guess it's an interesting way to go. It's a story Billy can tell his grandchildren. If, indeed he ever reaches the point where he can have children. Or a partner. Or a relationship.

I guess for now, it would be sensible for us to make sure Billy's not in control of Nana's perambulation, no matter how much they understand each other.

Unless I want another interesting story to tell.

Thursday, June 9, 2011

An empty vessel...

When I was a kid (frightened about what this blog post holds?) a teacher said in an attempt to discipline our class, 'Remember, an empty vessel makes the most noise.'

It stuck with me. It seemed then, as now, a powerful metaphor.

If you have no substance, you draw more unnecessary attention to yourself, than you would if you are credible. If you mean nothing, you stand out.

This made a lot of sense today, when I watched my boy behave in a way that parents dream of. Sorry about the preposition at the end of the sentence, but I can't work out the rearrangement...

Today, we had to take Billy to a meeting. It was about him, but it was not ideal that he was there. We had no choice but to bring him, if we both wanted to be present. He had to sit on the 65th floor of a city building, while we hashed out information that required actual focus, and he had to be quiet while we did it.

And he managed it. He managed it with style.

The interesting thing about his behaviour is that it is not what people would necessarily expect of a boy with autism. The generally accepted view is that a 7 year old boy with autism would be unable to focus, remain quiet, understand the need to subject himself to the needs of those around him. Many, many 7 year olds of all kinds could easily find themselves struggling with these things.

But Billy did not. Generally, Billy does not. He is calm and quiet. Unless someone coughs, sneezes, screams or cries. Or barks (generally unlikely to happen on the 65th floor of a city building, thankfully).

His behaviour today made us think about how he is viewed in the world when we are not around. He does not act out. He does not strike out. If anything confronts him, he internalises it. He withdraws, he internalises, he shuts down.

In NT terms, this is ideal. He is not a problematic member of a class. He is a dream. He doesn't make a fuss. He doesn't interrupt. He does not cause trouble. He's easy. In Billy terms, it is not ideal. It takes a toll, physically, mentally and emotionally.

The best metaphor we can find is the fuel tank.

The more Billy encounters in terms of noise, light, movement, sensory input in general. The more noise, light, movement... the fuller the tank gets. At some point, the tank will be full. Then his behaviour changes, drastically. He loses control, he reacts without regard for anyone except himself. This means potential destruction, disruption, devastation.

We have spent his life helping him understand what to do to avoid that change. Through hours and hours (years and years) of therapy, through modelling behaviour, through discussion, through research... we have helped him build the tools to manage his own, disordered fuel tank. It hasn't been easy, because it's not what we experience. It has meant slowing down, observing and re-ordering our own understandings.

To watch him today, rolling with the demands of an entirely new situation (albeit a fairly quiet and controlled situation) was inspiring. To know that so many people read his outward behaviour as a simple expression of his internal life, is depressing.

He does not make noise. He is not empty. He takes hits that most people don't notice. He handles assaults that would make most people recoil. Yet, he is carrying, within him, a fullness and a depth that most of us can only dream of. There's that preposition mistake again.

Today, as most days, I take my hat off to my little boy. He teaches me how to be. He reminds me that the general community have no idea. He teaches me to think before I judge anyone's behaviour. He makes me proud.

And that's more than I every dreamed could be possible.

And more stress over the preposition than I knew I could handle.

Monday, June 6, 2011

I'm at Hopeful Parents again...

This month, I've used the phrase 'quirky, murky nether regions'.

It may be my favourite set of words ever.

Click through if you've got a spare few minutes.