Friday, August 12, 2011

Up yours, normal thinking...

This week we got the results of a bunch of testing that we've had done on Billy. The WISC, the ABAS and the WAIT. Or something. Tonight, I am nursing a glass of red wine and combing through the pages and tables of numbers and recommendations, genuinely discombobulated that they are related to my child.

These things are necessary evils of having a child with autism, and form a nice paper lined begging bowl which we use to request support and services for our children. They are about as much fun as adenoid operations.

After the great debacle of 2010, which saw our family leave the safe confines of a small community school when they decided Billy was not in need of services (and some more extra galling statements that we will share once the legal action is over), we buckled down, opened our wallets and set the fan on high - blowing cash and time at a variety of professionals.

We love the clinical psychologist who did Billy's assessments. She is a truly experienced and compassionate person. Which made this week's reports even harder to take.

Billy, the boy who can script, shoot, edit and upload his own movies at not quite eight years old has an IQ of 68. For the new players, that places him in the 1st percentile - Intellectually Impaired. He has a photographic memory. He can absorb information at a rate of knots. He can read, write and add. He is charming and engaged and a joy to behold. And, in the eyes of the 'system' he is bone fide holding a position firmly behind the eight ball.

In cognitive testing, Billy tests at age appropriate level, for the most part. Nothing hints at his brilliance, but nothing says 'this kid is in massive trouble' either. His school report places his academics at a 'sound' achievement. But, if he was to be written up in the paper for some random reason, he'd be simple or handicapped or delayed... or some truly offensive word.

It stinks, plain and simple. But there's good reason behind the lingering stench of poop.

It shows what we were trying to explain to his school, in pure and simple numbers.

A child with a language delay, significant processing deficits and an impaired working memory has as much chance of functioning without support in a mainstream classroom as I have of being a Playboy centrefold. Billy has the above mentioned qualities, along with the genuine ability to achieve just about anything. Put him in a non-visual, language dependent learning environment, with no visuals or aide or task breakdown strategies and he loses the ability to achieve just about anything. At the same time, he magically gains the ability to stare into space, jiggle about until someone punches him and repeat endless excerpts from the Numberjacks.

There are a bunch of ways his learning journey can be made easier. They won't make the impairments disappear, but they can frame the task in an accessible way. Those strategies require people-time, people-thought and people-heart. Unfortunately, those things cost money, Except for the heart. That stuff can't be bought (which is unfortunate, as the education system could be a much nicer place with bit more aorta action).

I know Billy is not the numbers on a page in front of my swimming eyes. I know he is clever. But I also know that the world is not set up for the way he thinks.

I think about the amount of implied information out there - the times we are expected to just know how to respond to a situation. I think about the amount of verbal instruction that exists - when the rules of a game or the response to a crisis is barked to the crowd with no visual supports. I think about the reactions of law enforcement, health professionals and random old folk when Billy has no freaking clue what they are asking or why they are asking it.

He looks like he should understand. He appears as though he is wilfully ignoring you. I do not imagine his cute, indifferent face will go down well with a traffic cop or an emergency doctor trying to extract information or compliance out of him.

It's times like this, I realise the importance of autism awareness. It's not just about getting people to understand what autism is. It's about getting people familiar with what autism does.

For what it's worth, autism does not (generally) include (as a first principle) being a lazy pain in the bum, being consciously insulting or not giving a crap. It just looks like that sometimes. For advanced players, autism is not a deliberate attempt to make people laugh at you (unless you are Dan Ackroyd), not permission to ridicule you, and only very rarely something that requires instructions delivered in the sort of voice you use for your ageing aunt who has English as a second language.

On paper, Billy is a kid who qualifies for 'special school'. In reality, he beats crap out of adult opponents in trivia competitions and knows more about the subjects of Attenborough documentaries than the man himself.

The complexities of his learning style detailed in the reports this week have scared the be-jiggers out of the homeschooling part of me. I have real fears I'm not able to provide the scaffolding he requires. More specifically, I worry I will not understand the subtleties of what he requires. Add those to the health concerns, and the fears that my head might explode from a lack of alone time and professional hairdressing and I am, in all honesty, a little on the shaky side.

I know one to one teaching suits him well. I know he is learning and developing. I know he is genuinely happy and working on the barest minimum stress level. What I do not know is if this is the best thing, for now or for ever.

One foot in front of the other. One Numberjacks dvd in my head at once. One glass of wine at a time.

Time will show what this growing generation of kids on the spectrum can contribute, if they are supported (or not) to do so. How we articulate the need for that support, and secure the means to provide that support is a whole other question.

One for a night without so much wine...


Suz @ Segovia and The I Love You Song said...

On a friday night, the complexities of this are enough to make my head spin, in addition to the lovely little bourbon I have just partaken in. I know this is all ahead of me (with the Batsman being 4 and a half and with another kinder year ahead of him). Our next lot of assessments are next tuesday and while I dread them, I take heart from your wisdom here. The wisdom not necessarily from knowing the answers but being brave and strong enough to ask the questions in the first place. I think you are amazing Valerie and clearly your beautiful boy is too xx

Lisa said...

Ah, wine. Yes. I has wine.

Learning and developing, without getting suicidally stressed ( you or him) is not just the best thing, it's the only thing.

Because it's a journey that is sustainable - lifelong.

G'night, and what an 'ugh' birthday present.

And off on another tangent, I believe that the IQ 'number' is considered 'not valid' if the subtest results are widely disparate.

As for the reported 'learning style', I'm sure that 90% you'd know already from experience, with the other 10% being lightbulb moments or ideas to try. By teaching 24/7 for 8 years, you have to know a helluva lot more than a stranger.

I'd love to see the report numbers breakdown. Significant lowpoints in our reports were processing speed, and working memory, but combined with advanced (albeit unusual) language.

Angela Juso said...

Hi I think I would have needed a wine too to walk through all of the results but I agree with the other blogger who said you were brave for doing the tests. I think home schooling is the nicest thing for our kids when they are happy and unstressed they can do anything you keep chugging on there love we're right behind you. love ange

Dana Meijler said...

This stuff is so hard, I see a lot of similarities in my daughter Maya with Billy on their issues but also how they learn. I think as parents we will never be absolutely sure that the path we have chosen for our kids educationally is the right one. I read about Billy and think Maya, who goes to a special school, where they move at the pace of the children and has been great for her stress levels and such may not be so great for her academically in that Maya is nearly 8 and not really reading yet and while she likes numbers she is not really doing math yet either. I read your article and think, maybe I should be homeschooling her.

My point is that as much as I would like my daughter to come with a user manual which would give us the answer, we both know it doesn't work that way. And while I get tired of thinking about it (wine helps) I think it is good that we are continually evaluating and reevaluating what is best for our kids. They will be better off for that.

I often get bogged down in whether Maya is developing fast enough or far enough and that does pervade my thoughts for much of the day (and has drastically reduced my REM sleep as well) but I think what is most important is that they are making steps forward and it sounds like Billy is doing great.