Wednesday, August 31, 2011

Calling Dr House...

I have come to realise that our journey through autism world has led me to have relationships with doctors in the same way other women have relationships with actual, available quasi-compatible men.

Today, again, I collected photocopies of pathology results from a doctor, in much the same way I gathered a toothbrush, spare undies and that ugly emergency work outfit from past ex's bedrooms and walked away. I made an appointment to catch up in the new year, but we both know we will have moved on by then.

Dr Poo is not the first doctor I have had this relationship with, and I'm sure he won't be the last. It's just that we need different things. It's just that we don't have the same ideas about the future. It's not him, it's me. Well, it's my son, but that's a whole other tangent.

Dr Poo is a fine man. Let me begin by saying that. And he's a fine doctor too, no doubt about it. But he understands autism like I understand The Lord of the Rings. Not at all, for those in the cheap seats, with a vague sense of curious revulsion (Gollum) and confusion (all the other freaking characters). And as it happens, I have a similar level of medical knowledge, so I have no cogent comebacks to his doctoral pronouncements.

He proudly poked Billy's stomach today and pronounced him 'emptier than ever'. Billy, while enduring said poking, announced 'That tickles!' (a script from Roary the Racing Car). Dr Poo responded with, 'How fantastic! It's not hurting him at all!'

No, it's not hurting him. Because nothing hurts him, nothing ever has. Or at least, nothing did hurt him much until we started sensory integration therapy.

I wonder, Dr Poo,  if you've met autism, or indeed Billy's individual brand of it. He does not feel pain like we do. He never has. In fact, many sensory receptions and expressions are unique. He's the one who has endured reflux that would knock an adult down, without complaint, remember? He's the one who has had a hernia since birth, and no one knew because he didn't complain (in the traditional sense). He's the one who spends half his life lying with his tummy stretched over the arm of the couch, the edge of the trampoline, the pile of pillows he's made on his bed attempting to relieve the discomfort he registers. He's the seven year old who has been vomiting since you put him on laxatives and reflux drugs.

He's my son, and I'm wondering if you have listened to anything I've said in the last four months.

Dr Poo's response to my barrage of questions (actually just the word 'why' leading off an infinite number of questions made up of words I have already forgotten) was to distance himself and say, 'I don't know. I really don't know. I don't know the answers to the questions you are asking me (the flashbacks to my twenties relationships with tortured boys with guitars are intense right now). But I'm sure there's a man (sorry, doctor) out there who does know those answers. I just cannot remember his name right now, but I will, and... I'll call you. Yes, I'll call you. Soon. I really will.

In all seriousness, Dr Poo acknowledged that Billy is not well. He acknowledged that Billy is less well now than when we first came to see him. We had a child that could not poo appropriately, now we have a highly anxious, cyclic vomiter who still poops pebbles without drugs.

Dr Poo acknowledged that he does not know why. We have the same aim - a healthy (i.e. pooping and not refluxing child) but we have different thoughts about how to get there.

I, for example, do not want to contemplate putting my 7 year old on anti-anxiety medication when he did not suffer from anxiety until we started giving him chemical laxatives and PPIs. Dr Poo thinks it might be a good idea. I have no interest in giving my 7 year old drugs clonodine on the off chance his neurotransmitters are off kilter, without testing said neurotransmitters first. Dr Poo thinks it might not be a bad idea. In fact, last time I looked, we went to Dr Poo to address the fact that our child was pooping his pants with something approximating gay abandon. Suddenly I'm supposed to contemplating giving my child anti-depressants and blood pressure meds to get him pooping in the toilet.

Um... no.

Seriously, it's not you, it's me, Dr Poo. No more.

Dr Poo did suggest we go to a geneticist. And I agree, we should. I have a feeling that geneticists are the folk that people who have no answers are sent to, and I pity the fool we will see, to be honest. I'm hoping this guy (as I know he is male) will have the people skills of Oprah and Stephanie Dowrick combined, because he's gonna need them.

Every single diagnostic physician we have been to has said the same thing about Billy. One word - atypical. Yeah, autism, but atypical. Yeah, hyperacusis but waaaay atypical. Yup, that's Transverse Myelitis but it's definitely atypical. Yup, this kid has gut issues, but they are quite atypical.

We have some clues - high iron/ferretin/b12 levels despite zero iron intake in the diet and no evidence of haemachromatosis, high bicarb levels, odd IgA and IgG readings but no coeliac evidence, declining Vitamin D without any change in activity or diet, hyper mobility in the extremities, high palate, crowded small teeth, soft nails, bilateral ptosis, positive Gorlin sign, silent reflux, low motility, hyper intensity in the outer surface of the brain in his MRI, tiny cerebellar cyst, odd blood sugar behaviour, keratosis pilaris or some odd lumpy skin on the knees and ears, bizarre reactions to vaccines/drugs/homeopathics, fine and gross motor delays, myoclinic jerks, intense hyperacusis to vocal sounds with possible canal dehiscence, oh... and autism.

But they are just clues. And I am not Dr Poo, or any other bodily fluid Dr. I am a kids TV writer, and a sightly crap one at that (more about that in another entry).

And so we return to my original plea.

Dr House, if you exist, in real life, particularly in Australia (but we're not fussy)... could you help out? Are we ringing any bells? Are we singing your song? Are we tickling your ivories? (or is it tinkling your ivories...?)

I would like my child to be able to take a dump consciously and healthily without drugs. I would like my child to not freak out when his dog barks or someone coughs. I would like my child to be safe and able to learn at school.

Or if that's not possible, a gigantic lottery win would be awesome, so we can fully employ his wonderful tutor and settle into a counterculture existence in the centre of Australia's biggest city.

Or if that's not possible, please send giant dragons to spew fire at the hair of intolerant politicians and shock jocks for my amusement.

Hey, a girl's gotta be able to dream, right?

Sunday, August 28, 2011

Can you live with half a heart...?

This week Billy and I cried together. When I say 'cried' I mean streaming floods of ugly face tears, both of us. When I say 'together', I want to start crying again.

I'll delve into the why of the tears in a minute, but I want to quickly divert into the togetherness part.

I'm not sure how, in almost eight years of Mummy-dom, I missed the fact that Billy really struggles with empathy (in the NT sense). He has always reacted really strongly to peers being upset. I took that to mean he was empathising. He always looked so worried, and worked hard (if he was close enough) to calm his friends down.

This week, I realised those reactions were driven by self preservation, first and foremost.

The longer we live in autism world, the more profound the effect of the hyperacusis on Billy's being. When  his friends cried, he was trying to make them stop, to make the sound stop. Not to make them feel better, but to stop the sound hurting his ears. This week, when I cried, I cried quietly - in Billy's full view, but quietly. Billy knows I will do most things quietly around him, so he does not fear I would wail and send a wave of sound-pain through his body. He has no fear of me, and he has no empathy for me. He did not react at all to the evidence that I was sad.

Maybe he is unfamiliar with my sadness. It's certainly the only time I have let myself cry in front of him. And yes, half of you think, 'hey, kids need to see all kinds of emotions' and half of you think, 'jeez, pull yourself together lady' and to all of you I say, 'Yeah. Whatever. I'm doing my best. Sometimes I make the wrong call.' To be honest, I haven't had much cause to cry in Billy's company (outside of hospital rooms) in his life. The sadness is 'big picture' stuff, best chewed over at 3am when I'm in that optimal mental state for thinking about the future (yeah, right...)

But last week, while I cried, he looked at my face, covered in tears, through his own tear stained eyes and registered a big old nothing.

The reason for all these waterworks? The dog. Noise. And how we handle the former's need to make the latter.

Scruffy is an awesome dog. He has learned not to bark in most circumstances when a dog's natural instinct is to let loose. Not when he sees birds or possums. Not when he sees another dog. Not when he's in the back of the car with the window open and his tongue lolling out. The one and only time he barks is when someone comes to visit. Briefly, but loudly. He is 35kgs of long white hair. Not a small dog. His bark is enough to scare the be jiggers out of a serial killer. Unsurprisingly, it turns Billy into a puddle of goo. And not happy, Hallmark style goo. Screaming, crying, on the edge of self harm kind of goo.

This has got a LOT worse since we started the drug regime for his gut. A lot. I have no idea what that means. The drugs make him vomit cyclicly (is that a word? It looks like a name for an insect) but I have very little hope I can convince the GI doctor that they effect his hearing/mental state as well. This is a man who took my statement 'Billy does not eat dairy' to mean 'Autistic Billy has an autistic behavioural aversion to dairy'. I'm getting the feeling he's not quite on the A Team (if you get my drift).

I would go so far as to say, we could handle this before the gut drug regime. But right now... oh boy. We are not handling it well. Any of us.

All the dog has to do is sigh, and Billy is weeping and reaching for the headphones. If he actually barks, it's a whole other story. A frightening story. Billy goes to a place he has never been before, at least not in my presence (and that's been 95% of his life pretty much). He has started screaming hysterically... horrible high pitched horror movie ingenue style screaming. Often in the foetal position. Always a precursor to tears, and running away. If the door was open, he would be gone. If there was a busy road between his hysterical self and salvation, he would not notice.

Awesome, huh?

So why am I crying? Well, here's where I welcome you into my own world of odd adjustments. I'm crying because my kid is struggling, for sure. It takes its toll, and some days it's just plain hard. But, as I said before, I can usually hold it in until I am (at the very least) out of his eyeline. Driving the car is a favourite time to let it all drip out, slightly dangerous to other drivers, I admit but I'm sure I'm not alone. I also like arguing with phantom people in the car, pretending I'm talking on the bluetooth to someone. It's amazing how many conflicts you can settle when the other party isn't even present.

But, I digress.

I am crying because Scruffy is my second child. My alternate child. And no, I am not someone who treats my dog like a child. He does not own clothes or eat chocolate or have his own room.I am someone who subverts my desire to be nurturing a tribe of children by having another being who needs my care. I enjoy the responsibility, I love the faith he returns in bucket loads (I did say he was clever, but  you understand those buckets are metaphoric, right?)

I may be truly lame in admitting this out loud (as it were), but I love to be needed. I like having a purpose beyond my work. I enjoy the emotional learning that comes from love. It's just that some days it rips strips from my heart.

And last week was one of those days. Those weeks. We had one of those days. Whatever (it's sad that my job is writing and I can't get that straight in my head). I need to get me some filters before I am unemployed as well as tribe-of-kids-less.

Last week, I felt angry at autism for the first time in a long time. There are lots of other good reasons why we only had one child, but the guiding one was the effect babies had/have on Billy. It's very much like the way barking effects him now. That's no way for a child, who already has a bunch of challenges, to live in his own house - everyday. Now that we have been told his hearing issues are physiological at their root, I feel quite reconciled in that decision, because, 'No, Virginia, he will not grow out of it/get used to it. Possible surgery, when his ears are fully grown is the only chance he's got.'

We could not risk losing our boy any more than we had already. And so we did not try for baby number two or more.

I give you that one, autism. Because I have to. Because I respect you enough to work around you. What stinks is that you now are threatening to take my slightly hairier son away too. I'm not letting you win this one, because I need the dog. We need the dog. But I need the dog.

This once, I need to put my own needs in the front of the equation. We'll do more training. We'll get a dog walker to further amuse the dog out of barking (OK, it's a long bow but we can only try. Two walks a day can only be fun, right?). I'll try anything.

I cried because I'm sick of giving stuff up. We've bent ourselves like pretzels around this damn disorder, often to the detriment of our adult lives. And I can suck most of that up. I just need to keep my dog. I need the dog love. Never mind all the great things Scruffy has done and continues to do for Billy - the companionship, the language, the chomping of toys (therefore necessitating the purchase of new ones).

As I type, the dog is at my feet, actually lying his head on my feet. Staring up at me. Snuggling in a little closer each time I look at him. Which, given his bulk, is actually a little disabling. But, I'll give up temporary mobility for this. I'll give up a lot for the many, many benefits this dog brings all of us. I just don't want to have to accept that my child's physical and mental health is damaged by his presence.

So, autism, bugger off and let me keep my heart. At least half of it.

I do not want to be forced into being a crazy cat lady. I'm close enough, without the cats.

Monday, August 22, 2011

It's been a while...

I'm a bit ashamed to have left it s long between blogs. I have no excuse really beyond too much happening. Thankfully, in these busy times the Apple Corp keeps me connected (if not actually responding!)

As I type my first blog entry on my shiny new iPad (birthday present) and deal with the hilarious auto correct mistakes, I really wonder how parents of autistic kids coped without these loel gadgets.

I know times change and needs must and all those sayings I learned from my old aunties, bu really... Seriously... The things that we can achieve because of an iPhone, a lap top and now this iPad, really shock me.

Billy can learn (from spelling games to maths games to electronic books). ?
Billy can play (it's hardly worth going into the things he can play on these gadgets. Billy can cope with overwhelming social situations. Billy can communicate with other kids and his family in was he wouldn't have a hope of attempting in his day to day life. Billy can keep up with his NT peers in a popular culture sense. Bily can expand his skill base in preparation for a future that uses technology we haven't even dreamed of yet.

And then there's me.

I can work. Two years ago, it was a desktop or nothing. Clunky old PCs took a wet week to start up, and periodically ate my work, tempting me to throw them out the window of a moving vehicle. I couldn't drag a desktop into bed with me, I couldn't write while Billy was in therapy, I couldn't sync my appointments with my dreams and try to organize my constant stream of thoughts, ideas and crazy dreams. I couldn't blog easily.

Over the last week, we've been in hospital with Billy, having more tests. We've been working out of home while trying to keep our homeschooler both focussed and calm. We've been celebrating birthdays and friendships and the fact that we are finally living in a place where these things are way more possible. It's been... A little hectic.

But through it all, we've all been leveled out by these pieces of technology that keep us connected and communicating.

I know people will think, 'Hang on, you can't rely on machines to do the communicting for you. Technology isn't human. It drives us apart.'

And to those people I would say, that may have been the case in the past, and/or it may be the case in your family, but it is not the way for us. When you watch your child struggle to utter words, never mind string them together... When you see your child overwhelmed by normal human experience... When you have to turn your brain insideout to try to help your child understand something that a much younger child picked up without conscious thought... Then you see how the latest wave of technology can help.

I can leave the house now, confident that Billy is less likely to be assaulted by the sound of another child having a perfectly normal reaction to life. Billy can share moments of play and connection that do not require a raft of social scripts and prior knowledge prop them up. Together we can find ways to plug gaps, to answer questions, to plan new experiences with ease.

The one problem I can see... Angry Birds.

It distracts me. It enrages me. It beckons me back all the damn time.

To be honest, despite a heinous result from Billy's endoscopy and waaaaaaybommuch work and an ever growing pile of school work (Billy has discoverednthe self motivated research project, which he now uses to fill every last moment of our homeschooling time... Let's just say we have a LOT of information about moorhens and pademelons to process)... Despite these things, it has not been a busy enough week to stop me from blogging. Those birds and pigs are the real reason.

I curse them, and the slingshot they flew in on. More than that, I curse the game developers who made them, and the ones who are (I am sure) cooking up the next cute, addictive app that will distract me further.

If only I had one of those minds that could invent the next one, I could be distracted AND filthy rich. I need hyper focus, wit, a specific knowledge base, a love of repetition and a mind like a steeltrap. Hang on... I know someone like that.

Is almost eight to young to invent the next app craze? Could we turn it into a homeschool project? Would the rest of the world be interested in a Crazy Gazelle app?

I will post this with apologies for auto correct, because. Cannot work out how to scroll back through what I have written. Perhaps Billy could help me work it out. I will ask him...

Just as soon as I clear 3-24 on Angry Birds.

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...

Saturday, August 6, 2011

I am at Hopeful Parents...

Where other people's words provide the care and cups of tea I crave from our hospital system.

Click through (and wear a mask), Billy's sick again.

Thursday, August 4, 2011

Memories... repeated over and over again...

Sung in my best Barbra Streisand voice (which, unsurprisingly sounds nothing like Barbra and everything like Rebecca Black).

We've been going through a bunch of home movies recently. Billy discovered the hard drive on our DVD player, which is where we stored said movies until Apple Corp entered our lives and shut down our ability to choose. If you are a fellow autism parent, you will probably understand how well documented Billy's life is... we've got feeding videos and social experiments and shaving cream and rice play and video modelling experiment after video modelling experiment. Add that the the endless visits to the zoos of Australia, and you have many gigabytes of Billy.

And he LOVES every last frame.

For Billy, they are fodder for scripting, they are proof that his memories are real, they are comfort. For us, they are proof of how far this boy has come.

I wanted to draw a line in our funny looking autistic sandbox with this post. I hope it gives hope to families who are just entering the autism game, or at least calms some frayed fears, or makes someone smile.

I've been watching a lot of two-three year old Billy in the last few days. I've been reminded of how our lives were ruled by his challenges. We were able to manage one trip out of the house every day. Any more than that, and Billy was a sad mess. Some days we didn't make it out at all.

Most of our trips were to zoos, because that was what made Billy happy. Having said that, if the zoo was busy, or had a school group in it, or had construction going on, or (god forbid) had a screaming baby in it... the trip was over and the day was done. We went back into our cave, which mostly involved Billy shut down to sleep and me cuddling him on the couch and cursing at the neighbours when they let their kids scream endlessly in their backyard.

His tiny eyes are often red rimmed in our home videos. They have huge dark circles under them, often. His hands were never far from his ears. His voice is charmingly babyish, the delay in his language just making him look cuter (to us, of course. If you look closely at the background, you can see people looking quizzically at the tall three year old with the one year old's language. He echoes almost everything we say, he falls into repetitive question/answer forms, he struggles to sustain any kind of conversation, his vocal tone is cute as a quince but just slightly off in an unexplainable way. You can hear the strain in our enthusiastic voices as we try to drag him out of his defence position... you can hear the wanting in our voices, the hope that this veil over our treasured boy would just bugger off and leave us to enjoy our lives together.

Those really were the dark days. In memory they seem dark. On video, they seem dark. Hopeful, but dark.

Today, we are in such a different place.

The autism is still there, as there as its ever been. His health is still compromised, and the health threats come in waves. What has changed is our perspective. Both the grown ups and Billy... we've changed as a family.

We are happier, more accepting, more courageous. We have the ability to take on more, to navigate more swiftly, to anticipate, avoid, alleviate a lot. We can take chances and be confident in our ability to get out of  whatever happens in one piece.

I've been trying to work out why we've changed (or what changed within us). To be honest, I am not sure, but I suspect it's just time, experience and being hit repeatedly over the head with the wet fish of autism.

Along with a lot of positive experiences, we've come across way too much ignorance, intolerance and insensitivity. In big ways and in little ways. In schools and hospitals and shops and at family dinners. We've been insulted, ignored, abused and maligned. We've gone from thinking the problem is autism to realising the problem exists well outside of Billy and any condition he might have.

Even in situations that have been welcoming, there have been compromises. Even in places where he is comfortable, there are qualifications. The world is not set up for difference, and somehow people have got the idea that it's OK to denigrate someone (or their family) because they are different.

In the beginning, we were trying to avoid being the different ones. Now, we accept who we are. Different has become kind of normal.

Today, Billy saw a new doctor - a cardiologist. He had a cardiac ultrasound, and he did it with no preparation. Then we went to the vet (full of barky dog potential). Then we went to a photo shop and had passport photos taken. Then we had cake, and Billy got to have a surprise visit to Daddy at work while I went to a meeting. Then we went home, picked up the dog and went to the local dog park.

Billy did it all, in his own way, in his own style, with a lot of arm flapping, skipping and grimacing and a few ear covering tears. He said please and thank you when it was appropriate, he ate, he used unfamiliar toilets (a feat in itself in these days of explosive poo... a whole other story), he was awesome. He's come a long, long way.

We've come a long way. They're not dark days anymore. They're just days.

At the end of his appointment today, the doctor said 'You were really well behaved, Billy.Thanks' And Billy replied, 'Yes, I was.You're welcome. ' The doctor looked at me and said, 'We should all take our accolades like that.'

He's right. Yet again, Billy shows us a better way of being.

And if you will excuse me, I'm off to make some more videos. Billy's going to need something to watch in four years or so.

Monday, August 1, 2011

The power of one...

And no, I am not suggesting you read Bryce Courtenay (unless you really want to, and if you do, read the book about his son, Damon - April Fool's Day, because it's astonishing, in my opinion). But, already, I digress.

This post is about one to one teaching, and the power of it in the life of my son. 

We have just begun Term 3 of our Distance Education (homeschool) adventure. Distance Ed is schooling at home, that is fully supervised by the education department. We have developmentally appropriate units of work sent to us, and we complete them and send them back to a supervising teacher. 

It's (sadly) temporary until we get a handle on Billy's health issues (fodder for another post). It is a great way for us to get our heads around where Billy's same age peers are at, learning wise. It's a great way of exploring learning in a manner that accommodates both the expected (NT) and the possible (ASD) in our lives. 

Some days I want to throw up, because I cannot work out how to explain (mould, re-constitute, re-iterate, represent) some concept that Billy needs to learn. We've struggled with money (who knew that 7 year olds should be able to make change for $20?), we've spent more time on the intricacies of handwriting than I ever thought was possible (until an old episode of Elmo's World covered all the necessary basics in a 7 minute segment and I almost cried with relief) and we've listened to recordings of a lot of kids talking about their lives (something Billy finds as interesting as the rise and fall of stock markets of Eastern European nations).

Other days, I want to cry with relief. The days when things fall into place, when his little eyes light up, when he furrows his brow and works and works and works at something until he's got it. 

To be honest, most days have a fair mix of both in them. 

Billy likes to achieve. He is one of those kids. He looks for the light in your eyes when he's on the right track. He loves to share facts. He's very big on the 'I didn't know that!' or the 'Isn't that amazing?' in response to something new.

He is not a perfectionist, by any stretch. His favourite homeschooling phrase is, 'But that's OK' in response to my endless stream of corrections. I have all sorts of sneaky methods to ensure there is some (slow, incremental) change in his practice, because he would be one finger typing and never handwriting (never mind handwriting in Upper and Lower case) if he had his way.

He is not a dogged 'have a go' kid either. He's more likely to guess at something he's struggling with, than to apply any kind of strategic thought. He will not be the kid who hacks into the FBI, through sheer methodical determination. He may, however, luck into their database, and have a good look around (probably for their files about animals or trains.)

This is because Billy is the king of the break. 

He is the kid who ends a term completely unable to do something, who has a couple of weeks off, and who can magically do that thing (that has been causing his mother to weep into her cornflakes) at the beginning of the next term. It's like his brain needs the rest. It's like his brain has tiny teeth chomping away at the concept, taking bits off the edges, remoulding them with a bit of brain-spit and sticking them back on again. And now that I am thoroughly revolted by that image, I'll let it alone. 

We struggle for time doing homeschool. There are many things that make it hard for Billy to sustain attention. His inner ASD-ian/ADHD-ian fights with dog woofs, construction noise from next door, tantrumming toddlers over the back fence... we can be deep in some exhilarating spelling worksheet, and whammo... the doorbell rings, the dog barks, and we have tears and a resolution that he 'cannot possibly try again because everything is terrible and impossible and awful...' And then, we find a book about flamingoes or a crazy pencil (more about that later) and we're off on a learning journey again.

We struggle conceptually sometimes too. Billy's report (a very interesting document in itself) noted his challenges grappling with things like history (it's not here in front of me and there are no photos of it, ergo it doesn't exist - it's the scandal ridden politician's view of history). But there are ways around that (as politicians find all the time). We recently found a brilliant app called Strip Design. It's a way to 'have fun with your photos', if you are anyone but us. For us, it's a way to learn, a way to prepare, a way to ease into just about anything. We've made social stories with it, we've explored history with it, we've annotated Billy's (very fine motor-ly challenged) drawings with it. It's freaking genius.

Concept by concept, story by story, experience by experience, word by word... this homeschooling adventure is really starting to stick. Things are sinking in. There is more laughter. There is increasing serenity. There is a massive amount of flexibility. None of these things have a nasty undercurrent, to me. They all seem positive, productive, possible.

All in all, I dread the day (should it come) when we send Billy back in to a big class full of kids and bossy (not-Mummy) adults. I see how other kids thrive at school. I wish (for the sake of my sanity and hairstyle) that it was a place where Billy would thrive. But right now, it does not seem like the right place for him. Not in the form it exists in now (heavily populated, noisy, fast, lengthy in hour and plentiful in germ-age).

It sucks some days to have to accept that you only get one go at life, at least in this conscious life we live now, because sometimes it would be handy to be able to compare. For now, though, it is what it is. 

Homeschool is what we do, and it is working well on all sorts of levels that non-homeschooling did not. 

One to one learning means Billy learns. One to anywhere between 18 and 39 learning meant he did not. 

One to one learning means Billy is in control of his learning environment. Higher ratios mean he is not. 

One to one learning means we try and try and try (and rest and cry and get distracted and have a break) and try and try until we get it. That could not and did not happen at school. 

One to one learning means we can use a crazy pencil (seriously, instead of his name it has the word 'crazy' etched into the end of it, and it jumps around a lot, magically finding itself in the right position in his hand) to encourage the correct pencil grip, a set of tiny animal toys to encourage the appropriate behaviour and a series of un-smily faces and drawings of bottoms to endorse the 'wrong' way to do things.

Neurologically, Billy comes with an individualism that requires unique attention. We live in a society that cannot afford to respect the need for that attention, and instead chooses to see his difference as something to be moulded into something more recognisable. For now, I reject that reality, and choose to celebrate the difference. Even if it means I have a shocking home made haircut and tear soaked breakfast cereal.

For what it's worth, Billy's Distance Education report said he had a 'sound' grasp of the Key Learning Areas for 2nd Grade. For any parent with a child on the potentially mainstream-able end of the ASD spectrum, you will understand this is a double edged sword. 

On one level, we know he is deeply clever and has waaaaay more than a sound understanding of many, many things. On the other, we realise that an intricate knowledge of the populations of at least 100 zoos worldwide is not exactly what the Year Two curriculum is calling for. On the most important level of all, we see that making your way through school at an expected age level, with solid mental health and a general lack of physical and emotional bruising... that's a win.

My hair... not so much. But I'm convinced if I keep snipping, something nice will emerge.