Monday, September 12, 2011

Vomit in my mindspace...

This year has been full of examination for us. Lots of folk peering at, on or near Billy and sharing what they see. Doctors of various kinds, psychologists, therapists, teachers... the whole she-bang.

It's been interesting, eye opening, confronting, sobering, hilarious, frightening... I could basically take bites out of a thesaurus and make spit balls full of reflections on what we've learned.

And here's where we are.

Billy is awesome. He's funny and clever and full of enthusiasm and joy. He loves what he loves and he's blessed to be able to express what he does not love (in no uncertain terms). He tries hard, he is brave even when his best instincts are telling him to go hide under the bed.

And... as opposed to 'but' (because that's a negative mindspace, right?)... the promise of Early Intervention (ie. that your child might just lose the dx, might be imperceptible from his NT peers, could manage just fine with a bit of understanding) has not been fulfilled in our case. I'd say it hasn't been fulfilled in most cases, but that's a discussion for further down the page.

Perhaps we could have worked harder. Perhaps we could have pushed our toddler out of his comfort zone and forced him into therapy or groups we weren't happy with. Perhaps, perhaps, perhaps. (I feel a song coming on...)

The reality, looking at Billy and his cohort of EI peers, is that while EI has been really useful (in the same way that pre-school is useful in general school readiness for an NT kid), it has served as a nice little bridge through the troubled waters of diagnosis and school beginning. It introduced us to lovely friends who share the journey. It gave me an unhealthy attachment to instant coffee and homemade cake.

Early Intervention in Australia is not quite the same system as it is in the US, and seems like it might be similar to what happens in the UK. You get what you get. You find it yourself. You get what you pay for.  If you are tremendously lucky (ie. live in a well resourced area, happen upon a service with good people in it, have a tidy lottery win around the same time the A word raises its pretty head) you get good services. If you are the rest of us, you turn up and grit your teeth as much as you learn anything.

People who, since their recent employment, have learned an awful lot about autism invite you to workshops about 'special needs parenting' (which always made me wonder if I needed a diagnosis as well) and you quickly discover that the oestrogen telegraph is the most reliable source of practical information.

From EI, you make your own decisions about what next, and it's trial and error with therapists, services, support groups etc etc. Some make change, some make tears, some make giant holes in your wallet (or mortgage, depending on your choices).

Then you find a pre-school, a school, a small space in your kitchen and you begin the process of formal education.

By this point, you should (under the promises of Early Intervention and government funding) have seen the autism evaporate into a mirage of friends, birthday parties and the eternal soccer or ballet dilemma of the contemporary parent.

Or not.

Billy will be eight in November, and despite years of therapy, a shedload of supplements, a life with the least amount of stress possible and a style of parenting that has seen us both hanging out like dogs balls among more conservative folk... he's still autistic.

In fact, he's probably a bit more autistic (if that's possible) than he was when he was we started this journey. I say this because, though he has developed language (which we value greatly) and he has matured (for which we are grateful) it is very apparent that he is not in control of many faculties his peers have well and truly mastered. He is not well, health wise. He also has behaviours that, to put it mildly, are not even contemplated by NT kids.

Though we all may wish otherwise, he scripts endlessly, drawing his inspiration from absolutely everything he has ever heard. He grimaces and jerks his arms and upper body in a manner which can only be described (politely) as uncontrolled. He cries when the dog barks or someone coughs and this can start when he's asleep. He has to move his body every 2.3 seconds. He can concentrate for hours on Youtube and Minecraft, yet mere nanoseconds on handwriting or what someone else is saying. His IQ is in the intellectually delayed range, but he can flummox much taller folk in discussion about his favourite things, and his school work is at age level (now that we homeschool). I could go on and on (as I often do... wonder where Billy got that one from?)

The point of the game is that the autism has not gone away. It is not imperceptible. It is, in fact, markedly perceptible.

And here's the trap for new players.

Because we have been given a free ticket to the road less travelled, we are not too perturbed by the status quo. It doesn't change anything at all that Billy hasn't morphed into a repeat-free member of the First Fifteen. We're doing OK. In fact, a few rough medical experiences aside, we're mostly having fun.

But I see very clearly, that there are other families in a very different frame of mind. Like us, the first years of schooling have been sobering, dramatic and sometimes unpleasant. Like us, parent and child alike are struggling with all sorts of things - perceptions, sliding outcomes, morphing expectations, age equivalencies, resource availability, benchmarks and a bunch of other charming bits and pieces. But it's not even remotely fun.

Outside the autism community, people are struggling to manage their child and inside the autism community people are wondering why it all seems so hard. I'm guessing one of the reasons it's hard because someone somewhere said this disorder would probably disappear. And it didn't. Someone somewhere placed a statistically (and medically) improbable goal in their heads and they set their noses to the grindstone in order to achieve that goal. And it didn't pan out like they imagined.

This is not about good parenting or bad parenting. It's not about doing enough, or not doing enough. It's about life, and time and things just being what they are. It's about how much it hurts when you see your child struggle and you can't see an end to that struggle. It's about losing faith in a system that doesn't seem to understand you, never mind your child.

I guess it's about acceptance. Or not.

This is my kid. Warts and all. Grimaces and all. Violence, self harm, anxiety, ill-health, hoarding, food limiting, TV repeating, compulsive testicle tickling, not wanting to walk through certain doorways and all. Whatever you got, you got. Whoever they are, they are.

For those of us in the world of special needs, this whole game is often cyclic. Hit a wall, recoil, get angry, gather the troops and try a new tactic. The cycle is short for some of us, slightly longer for others and seemingly endless for an unlucky few. There are also those for whom the promises are fulfilled - a massive change, a loss of quantifiable behaviours, a vast improvement in health, and it is this what many of us hope is the way of the future.

But for now, we have the now. We have our kids. We have each other. We have a fight on our hands to find appropriate health and education services. We have an ever morphing picture of the future to taunt ourselves with.

As exhausting as it seems to keep moving forward, it seems even less fun to slide back. We have learned too much to stop now.

The roller coaster is in full forward mode. We've got our tickets. We're strapped in. No point in trying to send frantic signals to the operator now. May as well accept the possibility of a bit of vomiting, along with a few cool upside-down twists and turns.

I just hope no-one hurls too close to me. I can take autism, chuck can be someone else's department.

1 comment:

Di said...

Oh Valerie, your writing make me laugh...... that's good right? ;)
Viva la acceptance ~ life gets better with acceptance, in fact life can rock at times!!

I was told by Prof Moodley that "don't worry mummy, he will outgrow it by the time he is five". The good Prof then promptly emigrated to Canada and "LOST" all of our records (bloods etc etc etc). If I ever see him again I will be sure to chuck on him!!!! (so you are safe!)