Wednesday, November 24, 2010

Oh dear...

Today was a very, very bad day.

A little back story before I present you with the complete travesty that was today...

Last term at school, we decided to try half days for Billy. I thought we were trying this because it would work better for Billy (it did) but it seems we were trying it to see if he got sick less. He did get sick less, but it didn't mean fewer days off school. Therefore, the half days were deemed a failure. A week and a half ago, we abandoned the half days in favour of full days again.

Awesome. Not. And today, we paid the price.

More back story (Oh, I am a tease, aren't I?).

Half days were not working for Billy's teacher because it was hard for her to keep track of what he knew and what he didn't. It was difficult to get a sense of he was travelling in terms of the journey of the whole class. I get this, I understand. It must be very frustrating.

For Billy, the half days were awesome. He was alive when I picked him up. He was full of chat, excited about what he had learned in the day, keen for playdates and extension learning. He got sick twice in the term. Just happened what he got once was suspected whooping cough, which took him out of school (he is not fully immunised, neither are the majority of the kids in his school). So, he was out for fourteen days, no matter what. Those darned numbers.

For the teacher, it didn't work. I get it. I hear you.

Against all my better (gut) instincts, I agreed to try full days again.

On the weekend, he was sick again. Exhausted. Coughing, dark under the eyes, generally zoned out. We sent him back, and on Monday he pulled a bunch of stuff off a shelf in another classroom. Lego, other construction toys. Why, dunno. Guess he was overwhelmed.

Tuesday, he stayed home for the morning and went swimming with the class in the afternoon. Last night, he coughed all night.

Wednesday, today, he went to school for the full day. In the morning, they had an excursion. This included a trip in a bus - very exciting and very, very loud. They went to the CSIRO (science centre), and found out all about insects. Apparently he had a good time. Trip back to school in a bus, free play at school... sounds good?

Maybe, but it is actually very very bad.

Billy gets back to school and is banned from all his favourite safe zones by kids, being kids. Billy doesn't get context. To him, there is no difference between kids and adults/actual direction and kid chat/bullying and conversation... he hears, 'you can't play here' and he leaves. He goes to another safe zone and and gets banned because he was breaking rules.

So he leaves. No safe zone. Overwhelmed child full of the noise of 30 kids on a bus. What does he do? He returns to the scene of the lego crashing crime of two days earlier and... wreaks havoc. This time everything comes off the shelves - books, lego, cuisenaire rods, matchsticks, every kind of construction toy... everything. Every-f'ing-thing all over the floor.

I arrive at school to pick him up, and I can't find him. He's in the midst of the crap, jamming books back onto shelves under the supervision of his teacher. She tells me this is all OK, a part of the journey, totally fine.

W. T. F...??? No it's not. It's just not.

Seriously. This is not Billy. Never in his life has he done this. Never done anything like this. Well, I lie. Once, last year he pulled down a series of tubs filled with beads in the craft room at school. He says he can't hear in the craft room. That it's so loud, it's hard to make a good choice.

Are we getting a picture here?

Noisy + Billy + no appropriate intervention = a crash stuff down fest

So, what the hell do we do?

We are at the only school in Christendom where Billy will not be required to sit still for longer than it takes to complete a learning task. That's because no-one is required to sit still in order to maintain a sense of teacher mandated order. That's a big deal. I do not believe it is good for him to get the message that he is 'wrong' purely on the basis that his neurology demands behaviour that is considered inconvenient for teachers. It's involuntary. There's a certain amount he can stretch himself, and we work toward that, but... really, he's not bunging it on. And the more he forces himself to do the 'right thing' the bigger the cost at the other end.

So we're onto a good thing, right? Maybe.

I am increasingly worried that 'success' at school is declared when Billy behaves more like the other kids.  So, he gets through an excursion. Yay. I celebrate that achievement. In my head, I'm thinking, 'holy crap, there will be a cost for surviving two bus trips', but unfortunately I think the school might be thinking, 'he can totally do it, what the hell is she carrying on about?' With no understanding of the cost or, it seems, the consequences of totally doing it.

I wonder if today's classroom redecoration is even remotely related to the excursion achievement? I wonder if anyone asked anyone what happened just before Billy entered the classroom. I wonder if anyone was even watching. Actually, I don't wonder, because I know that no-one was. No-one can tell me how he ended up in an empty classroom slinging school supplies about.

And there's the crappy end of the stick. He needs an aide. He needs someone to help him. He needs someone who understands autism, and understands him and puts the two pieces of information together into a logical, reasoned picture.

And here's where I question whether we are doing the right thing at all, in regard to his education.

I do not want him to go to autism school where he is given the message that his autistic being is wrong, and needs to be re-trained.
I do not want him going to mainstream school where he is given the message that his autistic behaviour is wrong and must be re-directed.
I want him to go to a school were who he is is OK. Autism and all.

The autistic being and the autistic behaviour have to be OK. They have to be understood and anticipated and pre-read and managed and accepted and challenged and, and, and... all the things we have done as a family for the last seven years.

As I type I am clear that this is too much to ask of a school. Even hippy school. Without an aide, he is free to handle his sensory processing disorder in his own way, and he's seven years old. Seven year olds make irrational choices some times. Without support,  he is at the mercy of children who are amused by his behaviour and thrilled by what they can make him do. And we all know what that means. Without some freaking miracle, he is doomed to be 'that kid'... the odd one... the one who does weird things. The retard (and no, I don't agree with that language being used, but it is used whether we like it or not.)

I don't want to set my kid up for failure.

I don't have the answers. I just want to keep him away from all of this for as long as I can. I don't have the energy or the desire to force autism down anyone's throat. I am exhausted enough having it forced down mine.

We are the luckiest parents in the world, because we have a boy who sees only good in everyone. And we throw that luck away when we let him loose in a world not made for his sensitivities.

I have no jokes. I have no answers. I can barely see through my eyes that have cried too much.

Which made sorting out all those freaking legos and construction toys a little challenging, I'll tell you that much. Kids are going to be building spaceships with matchsticks tomorrow...


Anonymous said...

Not too much I can do or say cousin to try and lift your spirits after a day like that...but.... I've been hearing this song a lot lately for some reason (eventho' it's a pretty old song). It was written by a very famous Irish songwriter called Phil Coulter (for his own 4 year old boy who was born Downs Syndrome)and he specifically wrote it to be sung by the now late legendary Irish ballad singer Luke Kelly. This is a great version. Some of the lyrics may not be for Billy per se but the sentiment I think is the same :)

Anonymous said...

(((((VAL))))) um, i'll try to give a 'bright side' to this mess. if it were my boy, it would have been people, not legos that were attacked. we've started driving carter on school excursions for that very reason, the bus is a sensory nightmare, especially with kids all hopped up on field trip excitement like little crackheads. maybe it is time for the teacher to have a talk about how kids are not the bosses of other kids. to be honest, its a big problem for carter and i worry about it a lot. if they can talk him into getting under the bus seat in the morning, what the hell else will they make him so as they get older?? we're trying to work sensory stuff into his day more, like before sitting activities he does some heavy lifting. if you can, i would fight for those half days. ask the teacher to include you in her plans for lessons so you can pick up where she leaves off at the end of BILLY'S school day. maybe he can bring projects home to continue work on. there has to be a way they can work with you, it is hippy school for god's sake, isn't that the whole point of the existance? to nuture the individual spirit rather than fold it into a nice little square?? love and kisses to you both. you are an amazing mom, somehow you'll muddle through this one too.

Susan said...

God be with you. I swear you sound like a FANTASTIC mother!! May tomorrow be a brighter day :)

Lisa said...

Ah shit. One of those days.
I really hate the way that whenever you/I start to relax because things are going (reasonably) well, one of *those* days happen along just to remind us that we *can't* coast through.

Whaddya mean there are no safe zones that are safe from kids? Not fair, not acceptable. School can fix it. There needs to be a safe zone that is under the eyes of adults at all time - next to the librarian's desk? In an office?

Yes. What our kids need will always conflict with the (generally accepted)purpose of a school. If the teachers can't cope with that, then we need to let them off the hook. I've lost count of the number of teachers that I've had to tell (some several times before they got it) "Yes, I understand he's not passing, please just let him enjoy his learning, and I will take full responsibility for him not doing exams/passing/doing homework/whatever". I dunno, they must think that they're failures as teachers if they can't get the whole class to be 'good students'.

I never could get it to work for us but my ideal would have been for part-time school enrolment for excursions, art, sport, social stuff - the half-day stuff, and home school parent-responsible-for-completing-the-curriculum for the academics to let the teachers/school off the hook.

Schools don't like part-time enrolments I believe because it confuses their funding.

Wouldn't it be nice if you could, say, send Billy for the excursion, then have him home to recover. And have a 'curriculum checklist' where the teacher could check off whatever they have covered, and you could check off what you've covered?

Don't have to tell me, I know I'm dreaming - the edumacation department couldn't possibly trust the word of a parent that a particular curriculum area has been 'done'.

Anonymous said...

That completely and entirely sucks!

My heart is breaking for both you and stinks so bad.

Why can't everything just be so much darn easier and not so crappy.

Why do our kids need to change to be what society expects them to be?

Sorry I have no words of wisdom, just empathy and hugs Fi

Anonymous said...

FUCK, FUCK, FUCKETY FUCK is all I can say Val.

I have my boy home sick at the moment so I know how that feels. They seem to get sick all the time. Mine has a fever that has lasted 3 days now and no one can tell me why!!?? WTF

I think half days are awesome IF you can get the school to agree!!

I hate excursions just HATE them.

Hate them sooo bad that at time's I will drive my children to the excursion behind the bus because it's just toooooooo hard.
Bus + lots of kids+ Child with ASD = big smashing, screaming,crying fest after! When are schools going to realise they just can't do it?

Sometimes life is just so shit for us and our kids babe and it's just not fair.

If I could be so bold as to suggest you give Billy short weeks instead of days?. Start with giving him every Wednesday off and if he is still not coping try one day on one day off. Our children are different and thats a hard thing to admit but it's true and we need to help them every way we can. Hey if that means we do stuff a little differently then so be it! Our children are so awesome and they should get the best education for them. Do what ever you need to get your little man back to his happy beautiful self babe, he deserves it and so do you.

major hugs and love to you and Billy sweet heart :) xx

Jenni said...


I know how hard it is ... I really feel for you after a day like that. I have to wonder, though, if learning to sit still for some of the day would really be that bad for him. I know it isn't an easy behavior for him, but I have to say that I am definitely glad my parents forced me to learn how to act NT when I have to ... even if it was done unconsciously. I honestly believe it didn't come naturally to me ... but I also believe I am much better and much happier because I learned to conform to a small degree. You may find that, in the long run, he feels the same way.