Friday, December 30, 2011

What I want...

Billy and I spent the afternoon with one of his old classmates. In true Australian summer fashion, a few more kids from his school dropped around as well. The sun was shining, the screens were turned off and the pool was glittering (though arcticly-cold... a whole other atypically Australian summer story).

For us (OK, for me), these are glory days, magic times when the schedule is soft and flexible. I can drink a little too much coffee, and talk to other mothers. Billy can be himself outside of the safety of home. Both of us can revel in the fact that he is, above all, an 8 year old boy on his long summer holidays.

The other families we met at Billy's old school are truly second to none. Smart, funny, accepting people who continue to welcome us into their lives even though we have spent a whole school year apart. The adults are the kind of folk teenage me hoped to be have as grown up friends, and the kids are beautiful centred human beings with passions and talents they love to share. I know we throw the word around a bit too much these days, but truly... in terms of these people, we are blessed.

The chance to sit and talk about the things 8 years olds do (swing from being 16 one minute to being 4 the next, find beauty in simple things, suddenly decide they can take on a huge dangerous challenge without consultation with taller folk) is a gift, to me.

It works way better for Billy to have maximum non-social space when he's in learning mode, but home schooling isolates us a bit in this regard. Even though we try to fit in a lot of playdates, there's nothing like that schoolyard for affirming, non-judgemental comparison. It's not like I definitively mark Billy's or my success and development against anyone else, but a bit of kid-focussed benchmarking is a great leveller.

It's nice to know that other boys suddenly think they know everything and get anxious when they realise they don't. It's awesome to see other kids' skills often sit in a different place than their bravado lets on. It's lovely to watch other almost tweens yawn and hug their mothers at the end of a long swimmy afternoon.

In autism world, it is very easy to pin everything on autism. I know Billy is always going to see the world differently to his NT peers, and he's going to gather skills and process experiences in a unique way too. At the same time, there's an 8 year old boy in there.

While the others leapt and swam like penguins, Billy sat on the edge, scripted Spongebob and watched, clearly plotting the time in the near future when he would try out their tricks. The other kids grazed on fruit and biscuits, and Billy sat on the edge, jerked his arms and watched, noting which foods were eaten enthusiastically and which were the snack wallflowers. He takes these social occasions, in the same way he takes a lot of his life these days - as an active, reactive and charmingly unusual observer. You can practically hear the cogs turning, processing, sifting through the possible and the preferred, rejecting the loud, the close and the bright. He needs a ton of McDonalds fries as bribes to attend these events, but he gets a lot out of the experience (if it come in measured doses).

I absolutely, positively, definitively do not believe the ultimate aim for Billy is to be as NT as possible. In fact, I think the opposite. I think if he can be free to be himself he has the best possible chance of living a happy, productive adult life. But the terms of his future will be dictated by the NT world, by people I do not know now and maybe will never get the opportunity to brief on all things Billy.

I do hope, that in every phase of his life, he has the most possible options on the table - just like his peers.

I know we are fortunate that this current peer group welcome Billy and I. We are a different package, for sure, in so many ways. I try to give as much as we receive, in what ever way we can, but really it's hard to quantify the exchange. Without turning my kid into a sideshow amusement, I want people to know how much their friendship means to him.

This afternoon is, in a nutshell, what I want for Billy's future.

I hope that people will accept him. I hope that acceptance comes not from his ability to achieve some proximity to 'normal', but from an equal transaction. He is here, you are here. Together, you connect or not as needs demand. It's not going to be exactly the same social transaction that most people effortlessly exchange multiple times an hour, but I hope it can be as equal a transaction, nonetheless.

Give-Take. Connect-Disconnect. Notice the difference-Still give/take, connect/disconnect.

I see now that he challenges his peers with his staunch desire to not be freaked out at every turn. I see that his peers are thinking, 'I'm just asking him a question and he's walking away, what the?' I also see that the longer we know these peers, the more flexible they have become at making themselves heard by Billy's ears (or assessing the exchange is not that important after all and happily moving on to other things).

I want the future to be full of these kids. I want these kids, as adults, to know that should Billy ignore them (and the communication is important), they should try to ask a new way. I want these kids to retain their acceptance and their lack of judgement. I want them to grow up knowing that making an effort with Billy is worth it. I want them to avoid falling into the shallow pit of fatuousness that says anyone who is different is automatically stupid and open for derision (or worse).

I want, more than anything, for these kids to grow up not frightened of Billy or anyone different to them.

Failing that, I want a lifetime lease on a giant island full of African animals, trains and the odd video game. And a nice granny annexe with high speed internet.

Thursday, December 22, 2011

Offending people is easy...

This week, with school over for the year, Billy and I have been driving about like looney tunes trying to get everything ready for Christmas.

I'd like to say there's a long story involved with why we are last-minute-Christmas kind of folk. There kind of is (dog kennel, crossed wires, postponed opportunity to have all that cooking and tidying done by older more experienced members of the family), but really we'd be running late if we'd started last January. So... we've been driving around a lot, and listening to the radio a lot. Actually, I've been yelling at the radio while Billy downloads endless episodes of SpongeBob onto (my) iPad.

Gosh, people on the radio are offensive. Especially people who ring in and complain about Christmas carols not being played in public places because we are all tip toeing around Muslims, apparently... (I hope I don't have to clarify how stupid I think this is...) Also people who carry on about how Christmas isn't like it used to be (oddly, I'm not like I used to be when I was 12 either, but I don't see the logic in lamenting the change). I'm also offended by the fact that it's supposed to be summer and it hasn't cracked 25 degrees Celsius yet (and this is Australia. It's hot here. It's kind of our thing.)

At the same time as I should be turning off my radio, and singing Christmas Carols to myself (lest I offend my neighbours), there's been an interesting question milling about in my head.

In autism world, the one thing we know is that all our kids are different. They all have different strengths and challenges. They look different. They behave differently. So much so, that at times it seems hard to fit them in under the same disorder umbrella (I have quite the image in my head, reading back that last sentence).

In reality, it means that we autism parents are often having conversations with each other as though we 'know' what the other parent is experiencing, when actually we kinda don't. Well, we do in the sense that we have lived through the 'holy crap, my kid is not like Johnny at playgroup' moment, and also in sharing the 'Thanks for that, Doctor, are you sure you have no actual advice for me?' diagnostic moment, maybe we also share the 'I will stab you with a pen if you continue to look at my child like that' impulse. But really, do we have a sense of the differences between our experiences at all?

My family is pretty fortunate as autism goes. Billy can talk, even though a lot of his language is scripted from other sources (some odder than others). He has pretty good control of his body, even though he is in constant, jerky motion that precludes kid stuff like team sports. He has stunned us this year with his capacity to learn at an age appropriate level, despite the fact that he struggles to to it in a mainstream classroom. He has poo issues. He has immune issues. He knows a lot about household insect eradication.

I have been fortunate to make a lot of friends in autism world, some I've met in real life, some I only know online. I've said before, and I'll say again, they are - generally speaking - astonishingly good people. Up until now, I've not really thought about how I could better respect their children.

I could make a list of the things we don't have to deal with or I could make a list of the things I am grateful for, or I could make a list of what I'm afraid to ask questions about...

I realise I often treat my autism friends in the same way I DON'T want people to treat me. I don't ask questions. I'm too scared to validate their reality. I just assume they think I understand, when really I don't.

How do you say... 'how do you talk to your child who doesn't talk back? or 'how does it feel when your child hits you with no remorse or understanding?' or 'do you think your child will ever write/speak/live independently'? You don't. You can't. So instead, we just act like we understand... or not.

This week, I've set some new rules for myself.

1. It's not so much what you say, it's how you say it.
I should think before I say, 'I wish Billy would stop doing Mortein commercials'. He's speaking. He has awareness of what he's saying. Yes, a lot of it is scripted. Yes, a lot of pronouns get reversed. Yes, he has a lisp and a BBC accent. But he's talking. Many, many of our friends are not. Bitching about how Billy is talking isn't helpful. Not for me, not for my friends, definitely not for Billy. Asking for help/strategies/experiences in the area of language... that seems OK. Whining because his language is a bee's penis away from 'normal', not OK.

2. It may never improve, so work on acceptance.
We're all up for a bit of autism hating. Not hating of autistic people, but feeling negatively towards the struggles that autism throws at our kids. But... shrieking with revulsion at some new autism related behaviour  is just a recipe for disaster. Not just for us, but for everyone else. I should be aware of how it feels, to the family of an adolescent who can't control their bowel for me to be blathering on about our sacrifices to the god of underpants. He's wearing underpants. Successfully more than not. That's a win.

3. Don't cry wolf.
Alternate rule title: Pick your battles.
Some days, hell some weeks, I feel myself settling into a wail-fest. Everything is hard. Everyone is an idiot. No-one gets it. I end up wanting to bombard my friends with the poo coloured clouds that are stalking my life. I want to fill my phone conversations, my emails, my posts online with my 'problems'... pithy, witty, well phrased versions of my problems but my problems nonetheless. But... I forget (all the time) that people are dealing with stuff I can't even dream up.  I forget they don't have the time or the space that our life with one pesticide obsessed Dalai Lama of a child affords. Already extended people have a limited space for my drama. They have a perfect right to a bit of... what's the phrase I'm looking for...? Compassion fatigue.

4. It's autism, not the plague.
You have several pairs of big underpants. Wear them. Proudly.

I do not want to be the reason why my friends are yelling at their computers. Nor do I want to become a stereotype of myself - the autism parent version of the cranky old lady who thinks people should wait in queues and respect their elders.

I want to present a positive view of autism to the world. I want people who have questions about autism, to feel like they could ask me anything. I want to have some accurate and meaningful answers for them.

I have no idea where Billy will end up, but I have some control over my own journey. So, like all good life changing resolutions, I will start from the inside out. I'm working on serenity, on integrity and on some consolidation of my cut-throat ninja skills for the moments when fools try and cross me.

Thursday, December 8, 2011

School days...

As I type, Billy is lying in bed, covered in stuffed toy animals, pretending I can't see or hear him. In truth, all I can see is the remote control pointed strategically at the TV. As it is very close to the end of the year, and I have Buckley's chance of fishing him out from under assorted predators and prey, I will take a moment to talk about our schooling story.

Around this time last year, I was posting obtuse distressed messages about Billy and school. It was, I would have to say, the worst experience I have ever had.

I would take a gigantic vomiting hangover over what happened  a year ago. I would choose to carry around a bag of stinking dog poo over what happened last year. I would re-live every heartbreak I've ever had again and again over what happened last year. It sucked like nothing has ever sucked.

As a part of that process, though, we ended up choosing Distance Education for Billy. That, in itself, was worth all the metaphysical nastiness.

 In Australia, Distance Ed is homeschool with the curriculum prepared, supplied and marked by a teacher at a base school. It seemed like the best option for us because it gave me a chance to benchmark both Billy and myself. Six years of therapy and two years of self directed learning at school meant we needed specifics about where his academic skills needed to be.

Choosing a school with a self-directed learning focus is one (repeat, one) of the key mistakes I made in school choice. As his mother, I can see that Billy is 'bright'. He has intense skills in the area of literacy and memory in particular. As a trained teacher, I believed very strongly in the philosophy of self-directed learning. As a human being, I hoped they would adapt to him as they saw him in action. I believed that his teachers were seeing (as we saw) that autism + Billy = an almost intractable inability to learn unsupervised in a busy, heavily populated environment.

They did not.

In what I can only believe is good faith, they assured me he was indeed accumulating skills in the magically osmotic fashion that true, self direction allows. It was quite confronting to realise, after two years of not inexpensive schooling, he could not write more than his name independently. He had no concept of number facts to 10, never mind 100. He was still grasping a pencil in his fist. On the upside, he was reading really well (something we did constantly at home, and which was done once a week by volunteer parents at school).

Why did we not notice these things sooner, I hear you ask? I have two answers. We did, and we believed.

We asked the teacher why Billy's skills were not advancing. She had two answers. He will do it in his own time, or we have no more staff time to allocate to him.

Our alarms increased (not surprisingly) in direct proportion to his teacher's defensive and progressively more absurd avoidance tactics. She had buses to catch instantly, she had double scheduled meetings, she had gloriously detailed excuses for the lack of evidence of actual work completed at school by Billy (involving fine motor skills and mental dexterity well beyond his abundant means).

What is clear now, very very clear to me, is that schools with no specific training in special needs (generally) and autism (in particular) have no right accepting children like Billy among their enrolments. If they do, they must commit to and undertake training.

Also, it is clear that schools whose philosophies centre around genuinely laudable concepts like 'equality' and 'equity' can and will use those concepts (when pushed) to defend their lack of resourcing in relation to special needs - after all, if one child gets 'more' of anything than another, it's not fair. It's not equitable. Right?

We also learned (and this is the scariest clarion call I have) that some schools will support their staff in the misuse of legislative guidelines. It is somehow more appropriate to lay blame on the parents, and (I guess) hope they will go away, than to address the specific issues relating to a child's educational failure. It is also more important to protect the reputation of the school and the integrity of a clearly ill-equipped teacher than it is to actually resolve a situation where a child has not received an adequate educational service.

I am confident there is no parent out there that would calmly accept that their 7 year old is functionally illiterate/innumerate and doesn't require intervention. I am confident there is no autism parent out there that would accept that a clearly cognitively capable autistic child should be allowed to continue to attend school without autism specific support. I am confident there are only a few human beings out there that believe it is OK to make false claims to a government body and effectively deflect from their responsibility over the first two things in this paragraph.

At least I hope there are only a few, because otherwise other families may have to go through something similar to what we have experienced.

While I'd love to rip the school a new one (and would have, gleefully, had our Human Rights Commission complaint not resulted in a full apology to us), what I will do instead is say, 'thanks'. Through your unbelievable action, you allowed us to find Distance Education, and that has saved Billy's education.

Twelve months later, he is writing, building maths skills and still reading like a champion. He is meeting expectations for his age group. More importantly, he is accumulating those skills in a method appropriate to his abilities. We work at home, sometimes in the park or at a local cafe. He needs constant redirection and encouragement. He responds well to his schedule and work expectations being written on a whiteboard each day. He likes his tasks broken down into steps. He is very fond (as am I) of a hug at the end of each task (though this gets a little time consuming when one single spelling word is considered 'a task' and we have a list of twenty to get through).

He still has contact with his school friends. We see them once a week, individually, instead of every day in a giant pack. He learns from them, the same way he did when he was at school, just without the exhaustion that came from constantly decoding language, various walls of sound and motivations of fast moving children.

It may not be everyone's idea of educational nirvana, but Billy is growing and learning again. He is way less sick than he was last year (GI wars not withstanding). His social skills and expressive language have taken an awesome leap into smart-arse tween world. The only down side is an emerging love of Louie the Fly.

Which will take up a whole other post. Or not, if we can convince Billy that animated insects used to promote toxic chemicals are not appropriate mind-mates.

A giant pile of stuffed gazelles covering all but your remote control finger, on the other hand... clearly, they are just fine.

Excuse me while I go fish him out from under there and do some more spelling and hugging.

Tuesday, December 6, 2011

At Hopeful Parents...

Click through to Hopeful Parents for a few thoughts about the hard days.