Saturday, June 30, 2012

Why are we winning?

In the world of autism, this is definitely a first world problem.

We're on a positive roll at the moment, on a couple of fronts. I'll go into detail in a second, but first let me drive myself crazy by asking 'why'?

I'd like to know why, so I could do more of the same. I'd like to know why, so others might get a sense of what might work for them. I'd like to know why, so I have some options when we take the inevitable two steps back in the near future. And no, I'm not being cynical or fatalistic. Anyone in autism world knows this is as inevitable as the purchase of the next great Apple product.

Billy is finally mastering the basics of Math(s). When I say basics, I mean basics. I mean number facts to ten, and understanding that 81 is one more than 80. It has been a giant challenge to get this stuff sitting easily in his brain. We have a box full of manipulables, more workbooks, 10 frames and 100s charts and number lines than a whole school and every single elementary maths app ever published. And finally, it's falling into place.

In learning terms, I think the keys have been repetition (read, drilling) and spiral thinking.

Spiral thinking, you ask? WTF? I'll admit I made this up, but I'll try to explain.

The basics, on one level, were too basic for Billy. He was bored. He wanted to move forward. Problem was, he could master an operation in the moment, and then the next time we tried to do it, he would have forgotten the whole thing. It just wasn't sticking.  So... we moved forward (for interest) and simultaneously spiraled back. That's where the apps came in most handy, because the spiraling back could masquerade as fun. We also release Billy from the need to write for much of the spiraling, which allows the actual learning to sink it.

It's the old autism conundrum. Or at least the processing/fine motor challenged autism conundrum. You need to write, but the process of writing turns your capabilities into disabilities. Balancing the need to learn with the need to write is always tricky.

However it's happened, we finally sat on the trampoline (our winter classroom) on Friday and did some simple addition without the aid of MABs or Unifix or number lines. And then we jumped up and down with joy. There may have been a few tears, and they may have not been Billy's.

The other thing that's going on is a huge surge in language.

It's a very surge in a very particular direction. He is suddenly (it seems) able to express the ability to take someone else's perspective. So, we are suddenly hearing phrases like 'do you think I'm lying?' or 'you are just being mean to me' or 'maybe (someone else) will know the answer'.

To those not living with autism of any kind, this may not seem like much in an 8 year old boy. But it's really huge here. It's a circle that's closing communication wise. It means his ability to understand that the bus may be late some days (for reasons beyond his control or understanding) is growing. It means his ability to not blurt out his (very important) opinion while someone else is talking is developing. It means he's able to express what we have known all his life - that he is an equal in this game and that he can and will play as an equal. While also mashing up an episode of the Regular Show and a clip from Mr Bean... but, I digress.

Why is this happening? It's the $64 000 question.

 - We have been hitting the supplements hard, and generally improving his health.
 - His gut is definitely healing, with probiotics and prebiotics.
 - He is taking in a blend of oils (flaxseed, vitamin E, sesame, avocado, macadamia) every day, in quite high quantities (one day I will try to unravel the role of oils in Billy's health... he is one who seems to need a high fat diet to thrive, and I don't know why...)
 - He is doing weekly sensory OT.
 - He is doing weekly CBT.
 - He is calm, or should I say living a life of low demand. Schoolwork, socialisation and stress all come in measured planned doses to maximise the positive in them (and yes, I think some stress is a good thing, more about that another day too).
 - He is growing up.
 - He is communing with aliens while the rest of us sleep.

It could be one of these, or all of these, or none of these.

For now, we'll take it, them, wherever is coming.

I look around, during these times, and while I am really happy for Billy, I can't help but see our friends dealing with their own struggles (and know we'll be back there soon). From ill health, to increasing violence, to physical regression to serious frightening mental illness... its all happening and it's all scary.

This life, for many of us has become a series of fights. Some we win, some we lose, some we just batten down the hatches and wait until they pass. No-one warned any of us that this could be possible when we first heard the A-word. Early Intervention never mentioned it, they were too busy making that crucial 'difference' we all hear about. The doctors and teachers often don't believe these things are happening, until it's too late. Then our kids are waylaid, or incarcerated or hospitalised when really, what they needed was to be respected way earlier.

So, when I ask 'why are we winning?' right now, all I can say is because we are trying. Or maybe because it's our turn, in case there is some perverse overlord of good fortune controlling this game.

No matter what, it's worth writing it down.

I write it down so I can remember, and so others can know, that things will change. For good or the other way, things will change. I am the kind of person who thinks you have no right taking credit for the change if you are not participating in it. I am also someone who thinks we are in extraordinary times in history in regard to the health of our kids.

It is not OK, in my mind, to write off so many kids as collateral damage. It's not OK to passively accept that our actions, whether they are health related or environmentally focused, are excusable when they are having such an obvious effect on our kids, never mind on the planet.

For now, though, I'll take the number facts and the joyous jumping on the trampoline.

Then, on Monday, we start the fight again.

Oh hang on, it's school holidays. Screw that, we're going to the zoo.


Michele said...

definately a win
So hard to tease out what works and why hey. Does my head in when we are having a good run (or a bad one too for that matter) trying to figure out the variables and contributing factors. Sometimes seems so random but want to keep doing what works or stop doing what doesnt. Sounds like you are onto something good for you guys so stick with it and keep on riding that roller coaster

Madmother said...

I guess I looked on it like a rat running on a wheel. Some days it seemed all we did was run and run and run, going over the same and same and same.

Then *crunch* it would click, and although it was/is still re-inforced constantly, that behaviour/reasoning/skill stuck.

At 14 we have a wonderful, helpful, self-managing most times Boy with Asperger Syndrome.

And all those years make sense. Was it the massive doese of fish oil? The CBT? The OT? The ST? The physio brain gym teacher aide social skills course star charts constant therapy life maturity friends constant neverending everlasting...

I do not know. What I do know is if he misses a dose of his Efelex he reverts to really emotional/sensory meltdown mode. I do know that as puberty hit and we increased his dose the mood swings lessened. I do know that I love him with all my heart and know no other way than our philosophy of setting the bar higher and living in the real world, not his world of choice.

Make no sense? Good, for this is our jumbled world of life.

The Bright Side of Life said...

Extremely happy for you that Billy is progressing so beautifully! Have a happy holiday and enjoy your zoo visits! :)

Wendy said...

Good for you- happy math numbers and joyous trampoline jumping.

Floortime Lite Mama said...

I adored your hopeful parents post