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.

Tuesday, November 29, 2011

Is it all real...?

We're back on Terra Australis, finally back in ship shape (jet lag is pretty impressive stuff, we have discovered), and I'm still dipping back into memories of our adventure wondering what was real and what was not.

It's bleeding over into all aspects of our lives.

On a completely fatuous level, I am constantly checking that our excellent, stylish and cheap-as-chips fashion purchases are still in the wardrobe. I'm afraid, having got them so cheaply and from such fabulous places, they will spontaneously combust leaving a pile of cool looking ashes. So far, thankfully, no such carbon has appeared.

On another, more complex, level... over the last week or so, there been a whole new curve to our fairytale ball.

It's a wily beast - the autism spectrum. It's a collective, interpretive diagnosis. To be diagnosed officially, one needs a bunch of folk to observe/document/agree/sign off. It's not an easy process for anyone. Given we are in an unprecedented era of diagnosis (a recent report stated a child is diagnosed with autism in Australia every 7 hours, though this is seen to be a gross underestimate by many locals), it's not just the diagnostic process that's a challenge.

A label of autism is hardly a golden ticket. It is, however, a public acknowledgement that the challenges present at diagnosis are unlikely to disappear completely (despite the carrot of EI funding that evaporates at age 7 in Australia). It's a statement to society at large, that this person will require support throughout their life. Some may need a little, some may need a lot. Some may need money, some may need logistics, some may need services, most will need a bit of everything.

Though there are occasional rumblings of diagnoses being 'handed out' to kids who do not 'have' autism, and allegations that autism is used as a catch all diagnosis for kids who have less specific conditions and yet require support in the education system, I have never seriously (ever) thought that people would genuinely, appropriate autism for their own nefarious ends.

Yet, for want of appropriate services, or want of attention, or want of a community (who knows) it seems like people will. One one level, good luck. It's in the news. It's an emergent field. There are a lot of support systems in place for autistic people and their families. If people truly cannot find their spot, or truly need interaction with therapeutic and social services, then... I guess... do what you have to do.

Here's the challenge, though.

The autism community is held together with chewing gum, string and trust. We look to each other for honesty, for guidance and for the odd drop of alcohol. We do not necessarily have a gigantic pool of reliable evidence and consistent professionals behind us. As much as we'd like to be able to look over our shoulder and find a musty library full of validated, repeatable research to back up our instincts and experience, it's not there (yet). What we have is each other - similar people on a similar journey with their hearts similarly open to the needs of our fellow travellers.

Maybe from the outside, this stuff looks attractive. There are a lot of smily faces, and LOLs and exclamations of preciousness in our kids. There are a lot of virtual places to be heard. There are a lots of cups of tea.

It is the secret bonus of living a life with autism - the generally stellar standard of the folk who share that life with you and your family. It's the wind beneath our wings, the carbs in our lunchbox, the air in our balloons.

Until, it proves to be stale, empty or smelling like poo.

It doesn't happen often, but when a toxic dust storm blows through a bonded group of folks in shared need, it leaves a nasty taste and a bunch of rattled personalities in its wake.

Sometimes it's a new parent in denial, lashing out at the possible identification of their child as actually autistic (insulting long diagnosed families with the revulsion in their voices). Other times it's an inflated ego, taking the 'moment' a little too seriously. Occasionally, it's a line of some kind that just shouldn't have been crossed. No matter what, it stinks.

I had forgotten how vulnerable we can be. I am rarely focussed on the challenges of the parents (we signed up when we threw out the birth control, in my mind, what you get is what you get). This week I realised that the grown ups in this game are betting on a house of cards we have built together. When the occasional dangerous wild card is revealed, it destabilises the whole structure - and we have to build it again.

We can, and we will, because we must. It is not possible to walk this path without compadres. Well, maybe it's possible, but not advisable. As I learned in Yosemite National Park AKA Heaven on Earth, if your friend knows the size and sole pattern of your shoes, someone can find you if you get lost.

OK, that's only vaguely relevant, but along with the video of the bear peeling car doors open, it was my favourite bit of Yosemite info.

Really, what I want to say is... the future will be full of genuinely autistic folk (more than now), and we are not really doing a bang-up job of caring for them in the present. Please don't randomly bugger it up now. It's already like catching falling jelly shots. It doesn't need to be any messier.

Monday, November 21, 2011

It's never over, even when it's over...

It's our last night on the Great Family Adventure, and I'm in utter denial.

It has been so magical, I don't want it to end. We have travelled around for three weeks, covered over 3000 kilometres and heard Moves Like Jagger at least 1500 times.

OK, I'm over restaurant eating and room service (even though we have all discovered some wonderful food while we've been here). I'm looking forward to my own bed (though the cleaning pixies who tidy up the room and do funny things with Billy's toys will be sorely missed). I'm very, very keen to see Scruffy again (as I hope he is to see us).

I'm kidding myself though. We have seen the most amazing things, we have met the most amazing people, and we have proven to ourselves that we can achieve things we thought were impossible. The USA has been very kind to us, and we were pushing the friendship. We asked a lot, and America, being America said, 'Sure.'

Can we have a side of bacon? (asked in every restaurant). Sure.
Can you put each food on a separate plate? (also in every restaurant, as a precautionary tactic). Sure.
Can we leave here and come back later? (every zoo/theme park). Sure.
Can you seat us away from the babies? (every where we go). Sure.


We just had to mention the word autism, and people said, 'Sure'.

It's hard to pick a highlight. San Diego Zoo is the pinnacle of all the city zoos we have ever seen (and we have seen quite a few). The haboob that accompanied us on the road to Phoenix was the scariest, most beautiful thing I've ever seen. Disneyland was pure magic, everything it promises and so very much more. They deserve special mention for their autism respect alone, but over and above autism, it was just plain good to us. Yosemite was majestic, calm, stunning, awesomeness. Half Moon Bay was life-changingly gorgeous. San Francisco was achingly cool and welcoming. Los Angeles is so much more excellent and so much less scary than I ever thought it could be.

After so many years of acclimatising to autism, it has been a joy to experience things with Billy - his way. It's been new to all of us, and so we have let him lead. In many ways, we have seen this whole adventure through his wonderful eyes, and it has been wonderful. We have weathered new noise together, we have taken new steps together, we have planned through totally new experiences together... it has truly been a lesson in life.

We are all tired. We are all hoping for a calm trip home. We are all changed.

I can't believe I have met some of the women who have held my virtual hand (hell, they have held my hair back while I have virtually hurled. Repeatedly) through this autism adventure. I can't believe the ease of those meetings, the depth of the connections and the aching sadness I feel returning home knowing I am putting physical distance between us again.

I can't believe we didn't argue/fall apart as a family/go crazy/break down in the desert or a gang neighbourhood/get caught in crossfire/witness a major crime/gain 10 kilograms/see a Kardashian... OK, I am genuinely a little disappointed about the last one. But a minor Real Housewife is a fair substitute, right?

I can't believe we have taken an autistic child on a huge adventure, and apart from a tired attempt at a meltdown at Los Angeles Zoo this morning when the Bat Eared Fox and Echidna refused to make an appearance, he has been astonishingly balanced.

I can't believe I am saying all of this when we still have a 14 hour flight to go.

For now, I will sleep and dream, and taking the advice of Crowded House, I will not dream it's over. I will dream of a second flight with no babies and a slew of new movies.

Thank you, America. For being amenable and positive and accommodating. For pulling out a bunch of smiles when your economy smells like a swamp and you are still leading a massive international conflict. For still having low prices despite my last statement.

I was genuinely scared before we came. Those of you who know me well will know it is not hard to scare me. I can see disaster in a cupcake.

My fears about this country, and Billy and us were unfounded. I will remember this forever and live my life accordingly.

At least I would, if it was over... but too much has happened for this to be an experience that ends. I've still got my virtual hair holders (thank heavens I didn't turn out to be a complete looney tune), I've got around a bazillion photographs and as long as Customs don't raise any eyebrows... I have a secret stash of snack food to smooth the transition to home.

Life is sweet.

Sunday, November 20, 2011

The Choking Man...

A week ago, at a lovely restaurant, in the company of extraordinary women, I witnessed the near death of a man I don't know.

He was eating dinner a couple of tables away, when something got stuck in his throat. For what seemed like an hour, but was closer to a minute, choking man tried to catch a breath, and he couldn't. One of our fellow diners gave him the Heimlich Manoeuvre, to no avail. The sound of someone trying to breathe, and being unable to, is seriously something I never want to hear again. A good 50 people sat frozen in time, watching, hoping, not sure what to do, wondering whether we should stare or move away.

Thankfully, at the peak of his struggle, a second diner took over the manoeuvre and the choking man was saved.

Just like that, crisis over. The choking man thanked the Heimlich men and they all went home.

We tried to resume conversation where it had stopped, matrix-fashion, a minute/hour ago. We tried but we couldn't. Two of our number were crying and the rest of us were a little discombobulated. It's not surprising, in many ways. Choking is scary. Almost dying is scary. The way a potential choking incident resolves itself instantly is just plain surreal.

We talked about the fact that choking hits close to home - low tone kids, oral motor weaknesses, accidents involving other kids... it was hard to watch, hard to experience, hard to reconcile.

For me, I have to say, the thing that hit me the most was that it was over.

I was relieved the man was still alive. I was absolutely delighted the men who intervened had been successful. I was glad the crisis had passed, and everyone could go home in one piece.

But if I'm really honest, and I try to be, I was a bit jealous. Because it was over for them.

I'm not proud of having these feelings. I'm not proud of appropriating someone else's crisis for my own emotional wallowing. But it stinks some days that our crisis isn't over. It's not always a crisis. Not every day. But it's always lurking. It's hanging around, waiting for its moment.

Some days, I want someone to appear from the shadows, give me a good sharp squish in the solar plexus and make the whole damn thing go away.

I don't want Billy to go away, not for a second. It's not really even about autism going away, although I'm not going to lie, I don't love every aspect of autism every day. It's about the underlying possibility of crisis.

Choking man reminded me that crisis is possible for everyone, for sure. It's awful to watch, and obviously, it's awful to experience. It's life. I get it.

But he also made me realise that my challenge as Billy's mother is to make sure he lives his life without the sense of lurking doom that I often have. We've spent too much time in hospital already, we have too many medications and doctors in our lives already, we see the smoky threads of future issues. We need to find a line between informing him of the risks he faces (maybe we should start with properly identifying as many as we can) and letting him live a life full of possibility.

We've been travelling for three weeks, and he has handled himself like a champion. He has been brave and accommodating and engaged. He has learned to regulate himself to the point where he can ask for (OK, demand) his own time (thank you, YouTube). He is clearly challenged, no doubt about it, but he manages his challenges (and is permitted to manage his challenges) in a way that has made this whole adventure possible.

The fact that things might happen, the fact that things will happen... just is. The things might be great or the things might be challenging, but we have to be open to... things. We have to welcome... things. Without a sense of dread.

This is probably a good mindset to be in as we prepare to get back on a plane for 14 hours.

Without knowing anything about choking man at all, I really hope he's OK. I hope the men who intervened and saved his life are OK. I hope everyone in the restaurant is OK.

At the end of the day, I want my kid to be OK.

Nothing to see here.

Thursday, November 17, 2011

Banana slugs drink water...

Last weekend, as a part of the fun, we took the kids on a hike through one of the most painfully beautiful woods I have ever seen.

To give context to my woods-niavity, most of the bushwalking near where I live is kinda crunchy and eucalyptusy. Not that there's anything wrong with that. You can travel to far, milder corners and find less natural crunch, but for the most part, it's fairly bright open country. Beautiful in its own right, but not like Northern California.

Billy needed a bit of quiet time (read: time away from people) so he stayed back and I got a chance to hike alone, and see both the countryside and the company I was keeping in a relatively relaxed state.

Relaxed, that is, until the discovery of the banana slug.

On the rich smelling, dark ground, many feet below the tops of the giant redwoods lay banana slugs. They were bright yellow, they were huge (think, small banana) and they were slimy to the max. All of which made them irresistible to the kids.

As a homeschooler, I can confidently say you could base an entire integrated curriculum on these guys.

Mathematics: count the banana slugs, compare length, girth, weight.
Literacy: ode to the banana slug, invent banana slug language, a banana slug is slimy: discuss
History: where was this banana slug born? What did this forest look like before the banana slugs?
Geography: plot the banana slugs on this map
PE: can you move like a banana slug?
Drama: can you think like a banana slug?
Religion: what does a banana slug believe? where do banana slugs come from?
Writing: why does your handwriting look like a banana slug did it?

See... it goes on forever.

Banana slugs became the glue that kept the kids together. Eeew. That reads much more literally than I meant it to. But they did unify a group of kids of all neurological persuasions. The kids spotted them, stared at them, watched them intently, protected them, and identified with them. It was quite a joy to behold.

The best part was when a banana slug, previously thought to be an orifice free (if that is possible) organism, turned its head (or perhaps its other end) and slurped up some water off a leaf. You would have thought someone had turned on a DS. All the kids were gathered around the poor thirsty banana slug, willing it to drink (or moisten its nether regions) again. They talked, they theorised, they argued, they wished... and in that moment, it was genuinely hard to tell which children had autism and which ones didn't.

Thank you banana slug. Glad to meet you. Don't want to eat you. You helped us all have a hike in the woods without worrying about all that other crap I talk about all the time.

You may have another drink (or bidet) now.

Tuesday, November 15, 2011

For the love of pixar...

This morning we are curled up in San Francisco, recovering from our wondrous weekend.

As we are within driving distance of Pixar headquarters, I thought it was time to explore part two of the lessons learned from our adventure on the american autism island.

Before I talk about the magical powers of Lightening McQueen, I just want to quickly talk about the isolation part of autism parenting, and why we really don't need to feel isolated at all.

Almost a year ago (I should find the post and link to it, but I am in holiday mode and can smell bacon cooking somewhere), we had a get together of a bunch of the Australian families involved in a local autism board. We all 'knew' each other, online, and had done for anything up to four years. But only a couple of us had actually met in person. To be honest, we were nervous. We were wondering how the adults would get on, we were worried how the kids would get on (or cope), we were worried it would wreck the tentative balance of the board...

Thankfully, nothing bad happened. In fact, spookily, nothing bad happened. No disagreements, no meltdowns, no tears. Not even from the kids.

In case that was a freaky case of all of us breathing calm gas, or something... I came to America, to meet some of the parents from the first autism board I ever joined. And this weekend proved that a relationship formed on the internet, can indeed translate into real life.

I'm not advocating purchasing a spouse online, though if that's what you want to do, who am I to stop you? But I am trying to point out that the support you can get online (stress that 'can' a few times because we all know the pitfalls of crazy online boards) can seriously save your life.

One of the original members of our board, opened her house to us last Friday night, sharing her beautiful family (and their various toys). There were five boys (three spectrumites, two NT sibs), three grown up men (sharing BBQs and comparing beer and sports results) and three women who could barely take their eyes off each other.

Even though there was nowhere near enough time to download all our stories, and thank each other enough... we learned some amazing things about the power of the internet-born support relationship.

What has grown (for us), sustained by boards and Facebook, is a kind of acceptance that maybe we haven't defined before. It knows your backstory, it knows your child's quirks already, it needs no contextualising. Plus it sees the humour in ending a meal with syringes full of supplements and meds. It doesn't question, it doesn't judge, and it knows when to put Pixar on the TV.

Seriously, on Friday night, the boys were all over the shop, having played, eaten, played, cuddled the dog, played, hidden in corners, played, jumped on a crash mat (I want one of those so badly), and played some more. Then the great god Pixar appeared, and five boys and one dog instantly curled up on the couch. The three ASDians clutched their electronics (2 iPads and a DS) and the two stunning sibs hovered, gadget free, around the screen. It was magical. Like a movie. Maybe even a Pixar movie.

There's always a way to calm kids. No matter what their needs. It may not be what your mother did. It may not be what your friends do. But there is always a way.

And while kids are calm, parents can truly connect. And relax. And laugh, and laugh, and laugh.

That, in a sentence (and a couple of fractured phrases) is the biggest gift last weekend brought.

Who needs Santa, when you have Pixar and the internet?

Monday, November 14, 2011

Lessons learned from the island...

This has been an extraordinary weekend.

In a beautiful misty beachside town, just south of San Francisco, I have learned a bunch of stuff about life and autism and life with autism. I'm taking these things away with the intention of using them as life principles, or t-shirt slogans, or both.

I'm going to try and summarise. Apologies if I make no sense. I will try and substitute with jokes. I'll fill in the chapters over the next couple of days, but for now, here's a beginning.

1.  I Do Not Wrestle with People I Have Just Met
Billy met his twin. Actually, he met brothers who are his twin, if you were able to morph them both into one human (which would, just for the record, be an irresponsible misuse of excellentness... but I digress).

They look alike, they walk alike, they think alike, they create alike. They are not the same. They are kindred spirits. So much so, that as we mothers were talking, we would randomly drape a hand on the head of the child we believed to be our own, and have to do a double take to clock that we were patting someone else's child.

Within nano-seconds of meeting, the boys were playing like they'd known each other all their lives, and were completely neuro-typical. OK, so they were pelting each other with Angry Birds and Mario toys and making forts in the hotel beds... but it was energetic reciprocal play. Billy, being Billy was keen to move the play to some good old fashioned World Championship Wrestling. His twins were interested, but some boundaries were required. And these are they.

'I do not wrestle with people I have just met' said Billy's twin. 'I need to get to know you first. Do you play Mario?'

Can you conceive of a better way for children on the spectrum to approach new friendships?

Rule. Qualification. Strategy.

It's so perfect, it's got that iPod kind of feel to it. Be clear, be pleasant, be inclusive. Work within your realm of comfort. Do what you can to connect. Understand your boundaries. Read the room and work from there. Build a bridge, walk tentatively over it.

Needless to say, after a quick but detailed discussion of Mario, African animals and why we can hear a foghorn sound every 10-15 seconds... the boys were wrestling like champions. Then they shared movie projects and flip notes. They remained firm friends for the weekend. They vowed to stay in touch (though in their eight year old cuteness they had actually fallen asleep/stayed asleep and were unable to say goodbye in person).

They haven't questioned each other's differences. They only remember their connections.

I'll get on to the extraordinary mothers and grandmothers, the unspeakably beautiful adventuring, the wine, the police presence in the hay maze... all in the next few posts, whose working titles lurk below.

2. For the Love of Pixar
2. Banana Slugs Drink Water
3. The Choking Man
4. Hold My Jacket So I Can Wrestle
5. It's Never Over, Even When It's Over

But now, I need a quiet moment to dry my tears. I know, just like him, I have the ongoing support of my autism buddies... but saying goodbye to them this weekend has been a little more than my heart wants to take.

This weekend reminded me I am not alone, and yet it also showed me what I am missing by being so far away from these women. It's bittersweet. It's a gift. It's going to make me incredibly grateful for my friends at home, when I get back.

Also, probably a little more annoyingly needy than usual for a while. I apologise in advance, for the fact I may need to wrestle you or throw a couple of Angry Birds at you. I warned you, right?

Sunday, November 6, 2011

Gosh it's been a long time!

But I have an awesome excuse... we are on a brilliant adventure through California (and a bit of Arizona)!

I'm at Hopeful Parents today.

Click through for a taste of the adventure, and a big celebration.

PS. we signed a confidentiality agreement on the Human Rights Commission matter. Suffice to say, the outcome was very much to our satisfaction, and the things that happened to Billy are unlikely to happen again. Phew.

Monday, October 24, 2011

Hauling over the coals...

Next week, when we launch on our California driving adventure, I hope to be free of the millstone we have been carrying for the last 12 months.

This millstone started growing in size about 18 months ago, when we realised all was not well in Billy's world. It took a bunch of steroids in December last year, when our family was shoved from our  bumpy but rewarding road, to being on a dangerous, slippery slope.

Enter an express lesson in disability legislation, child protection legislation and the cost-benefit analysis that is a good strong legal team.

This week, the millstone will accompany us to the Australian Human Rights Commission, where it will (hopefully) be turned into dust.

In our journey as a family, we have made a transition between two worlds - from a world where philosophy principally drives action, to a world where necessity principally drives action.

Before Billy was diagnosed, my feet were firmly in the philosophy world. I believed in frameworks, and theories and scaffolds that drove my every decision. I had a rule for everything, and I surrounded myself with people who shared a similar vision. It worked well for me. I built a career being the 'Nanna', the fact checker, the danger police where kids, creativity and scripts were concerned. I believed what I knew, and I worked hard to keep on knowing more.

Then came autism. The thing that shook me out of my ideas about what kids 'should' be able to do, and into the world of what my child could/couldn't do. I couldn't recreate the 100 Acre Wood with my toddler, because he was sifting dirt between his fingers and struggling to poo. I couldn't let my child climb trees with abandon, because his gorgeous, dirty fingers didn't have the strength or dexterity to hold a toothpick, never mind his own weight.

I lifted my feet out of my fantastical pair of philosophical boots and placed them firmly on the ground.

I read, I asked, I cried, I tried. Together, as a family, we learned how to speak differently so our son could speak at all. We rebuilt our living space to extend our son's physical abilities. We opened our house to therapists and psychologists and early intervention workers and doctors and social workers and all the scrutiny they bring. We acquired a 'team' who are with us to this day, guiding us through each new gateway that life with autism builds in our path.

Every so often, I'd go back to the relics of my past, and lament the fact that the platitudes no longer applied to us. Who really cares about interactive drama experiences when your child can't tolerate a room full of kids, never mind the lights off and the contribution of a booming orchestra. 'He's behind you!' and 'I can't hear you' (the mainstays of kid's theatre) became cruel taunts, not invitations to participate.

I'd listen to radio interviews where people talked about parenting struggles and their dreams for their kids, and I'd think 'I wonder if I'll be trying to cajole my kid to play in the school band, cos right now, I'd settle for a valiant attempt at a three word sentence.'

I didn't lament the loss of my theoretical life, though, in fact quite the opposite. Like any parent, I'd been stripped bare by the refreshing reality of child-bearing and given the cold shower of mummy humility. It was no longer about me, it was about my son, my family and the journey we would all make into the future. Add the special needs aspect to our lives and the path looked more overgrown than before, but not impassable by any stretch of the imagination.

This life certainly beats the shit out of arguing for days about whether it was OK to waste food on kid's TV (though I did get quite good at that one... FWIW, the answer is always 'no'), especially because I was rapidly learning that food (the selection of, intolerance to, and subsequent rejection of) was going to be a central issue in our lives anyway. As would, speaking, writing, learning, independence, emotional stability, listening, walking etc etc etc.

Though our choices as parents will always reference the folk we once were, autism is a more powerful master. It dictates choices, it focusses decisions and it requires constant, dynamic attention.

Here's the thing.

I don't think autism is a burden for me, at all. I think it's a hell of a load for Billy to carry and he carries it with grace and the temperament of the Dalai Lama.

To be honest, I have to thank autism for lifting the theoretical veil off my life and forcing me to live in the here and the now. I'm also grateful for the people it has introduced me to, and the amazing capacity autism has for sending chills down the average human spine (good or bad, those chills remind you you're alive).

The burden, the actual palpable weight I carry is the weight of ignorance and intolerance. Each time someone says, 'He is good, for an autistic kid, isn't he?', add a rock. Each time a request for support is met with eyes that clearly have no intention to follow through, add a rock. Each child that is allowed to stare and laugh without an adult speaking compassionately to them about what Billy is doing, add a rock. Each time someone confects an opinion about us based on what they think they see (without checking the accuracy of those thoughts), add a big, fat boulder.

We all want the best for our kids, unless you have some vital part of your soul missing. After living the exposed and examined life we have lived (the same life anyone with a special needs child has lived), to have our motivations reported as questionable, is beyond offensive. More than that offence, it sets a dangerous precedent for other families of children with special needs.

We are fortunate that we can withstand scrutiny. We are not vulnerable. We have some financial capacity and a good grasp of the English language. We are fortunate we work in the media and so have a slightly heightened ability to source and decode information.

For the record, they call it 'special needs' for a reason. No matter how much we want him to, our son will not one day wake with the magical capacity to be like the 'other kids'. No matter how much belief we have in him (and trust me, the belief we have is not quantifiable), the autism will not disappear. He will gain skills and lose skills and heal some and regress some (as hard as that is to write). We will do nothing but the best we can, to make the road as pleasurable and possible for him as we can.

This is our reality. This is our life. We share it with our 'team' and with a legion of similar families. We do not want a medal, and we do not want judgement. We want questions. We want answers. We want respect for our difference as a family. We are an open book, because the choice to be anything else was taken away by three little letters - ASD.

I hope this week, when the dust settles, I hope that we see (once again) that disability laws exist for a reason, that due process is designed for fairness not for administrative neatness. I hope focus is placed on the idea that one should, as we have learned to, think before every single act.

If that is not possible, then the narrative we share with our son as he grows will be a really sobering one, and I don't think it's right to rest until it is altered. To send him forward into a world that says his unique needs come second to theory or philosophy, seems an abrogation of my job as his parent.

I still have my eye on my old fantastical boots, by the way. They are shiny, after all. They're in the shed with my high school report cards and my uni assignments... those things I valued before I stepped barefoot into the real world.

Maybe Billy can wear them one day when he makes his own 100 Acre Wood.

NB. I know this seems crazy to even say, but if you are feeling like commenting (which would be great), please respect that the matters I'm referring to in this post are legal in nature. I do not want to be in the business of defaming anyone or degrading anyone. It doesn't get us anywhere... and it's illegal.

Tuesday, October 18, 2011

I write scripts for a living...

The irony of my career trajectory is not lost on me, now that we live in autism world.

Today Billy and I had a discussion about scripting. I say 'discussion' like it was a calm, rational, civilised moment. Actually, we were driving and I threatened to pull over and not move the car ever again if he did 'Super Why - the Swiss Family Robinson' one. more. time.

When Billy scripts, it's not just repeating. It's not just regurgitating. It's more like joyfully painstaking practice. It's seriously like rehearsal. He starts and stops, and re-starts again. He stutters, holds himself back, trying to integrate the sound effect and the spoken word in perfect timing. His face is in this beautiful, West-Side-Story-Somewhere kind of place, as he masters something that most of us don't even remember happening in the first place. Again, and again, and again.

We have limits on scripting, though they feel kind of arbitrary. They're mainly based around two things - the need to get something done (that scripting is stopping us from completing) or my fragile mental state (see the afore-mentioned pull over in the car moment). Sometimes they are based on the strange looks from Grandma, but I try to wash over those moments with facile statements like 'Ah, life with a photographic memory, eh?' because I do not want Billy to get the message that a strange look from someone is a reason to alter his nature.

I say 'nature' as opposed to behaviour for a good reason.

I seriously know less, in a concrete manner, about autism every day. It's like the more I read, the less I know. I'm a reverse wise old owl. I often feel like we are living in a world of 'outside-in' interpretations of autism (ie. the behaviour maketh the man). There's a plethora of mainstream research seemingly determined to reinforce the idea that if you can change the autistic behaviour you have succeeded, somehow, in changing the child. While I would do anything to make Billy's life easier, I really struggle with the idea that making him behave like the other kids is the aim.

I'd love him to be not sick a lot. I'd love him to have the ability to eat anything he wants and still have his body function. I'd love a couple of hours of non-YouTube related stillness or the ability to hold a pencil without shaking with exhaustion. I would give up everything I value for a calm, functioning gastrointestinal tract and a lack of auto-immune dysfunction.

Do I care about the lack of desire for sleep-overs or team sport... nope. Not a bit. Couldn't give a crap. Why? Because the 'just like the other kids' idea seems as trivial to me in relation to Billy as it did in relation to me when I was a kid.

Billy's scripting drives me bananas some days. It never drives him bananas. It soothes him, and entertains him and engages him like YouTube can.

I wonder a lot about what he can control and what he cannot. I try and think what boundaries I would set if he was NT and whether I should apply those same boundaries given that he is not. Some days I write him a pretty blank cheque for his behaviour, and on other days, I want to write a ransom note.

My frustration, though, is just that. MY frustration. It cannot be my child's fault that I am irritated by some of the behavioural manifestations of his disability. Never. Ever. Nor can anyone else in his life claim that right. Not his family, not his team, not some random grumpy old lady at the shops who thinks he should be seen and not heard.

We are grateful that Billy has the emergent ability to reflect on his own behaviour. We have some breathing room in terms of the sort of behaviour management most kids have to handle. He is generally polite, generally keeps his underpants in the right place, generally gets that Grandma doesn't want to hear those special four letter words you learn from video game play-throughs on YouTube.

We can see that random tears over things he cannot control, frustration that his pleasant walk down the street has been interrupted by a barking dog, deep fear that the baby at the next table might cry... these reactions and their associated behaviours are beyond his control. These are things we need to avoid, manage or suck up and live through.

Maybe that should have been the title for this post - avoid it, manage it or suck it up.

Today as I gripped the steering wheel in that nasty white-knuckle way that the child me observed in grown-ups many moons ago, I wonder was I avoiding, managing or sucking up the real issue.

Super Why is not so bad. Self-calming is a legitimate and valuable tool in the life of a boy on the autism spectrum. The fact that it drives me nuts is a timely reminder of the lot of an autism parent.

Quick trip back in time, to illustrate my point.

I have the great privilege of knowing some beautiful writers, especially songwriters. A lovely old friend wrote a song once, quoting a couple of bits of my drunken conversation. You can find the relevant pearl of twenty-something wisdom at the 1:48ish mark in this video, and it goes like this (for those with time, bandwidth or don't care that much issues): Accept all the things I don't want to accept, and believe in the things that are true.

Some days, in this autism game, it helps to lean on the clarity our twenty-something drunk selves had...

I accept that my son is different, unique, strange (depending on the day) and I believe he has every right to be just that - everyday. I will smile proudly, no matter what. I will speak calmly no matter what (OK, not if he is heading towards a four lane highway or a growly dog, I'll revise this one). I will allow him to be himself, no matter how that looks to the uninitiated.

And I will let him repeat Super Why. Sometimes. Quietly.

I may even keep on driving the car while he does it.

Thursday, October 6, 2011

Hopeful Parents day...

I am at Hopeful Parents today, frantically packing electronic gadgets in preparation for our big adventure.

Click through if you want!

Saturday, October 1, 2011

A new world record...?

I think our family might actually win a world record.

I could be wrong, I'm not certain, but I believe we might be the family that has been to more zoos, more times than any other family. Except maybe the Irwin family, but I actually think we might give even them a run for their money.

We have been (repeatedly) to all the zoos I can think of in our State and the one to the north of us. We are heading to California in a month or so, with an itinerary planned around zoos.

At least twice a week, we are looking at animals in some kind of animal park or zoo. When we are not at a zoo, we are reading about animals, talking about animals, playing with animals or (my personal favourite at the moment) curled up in bed watching David Attenborough documentaries on the iPad.

We do engage with other things (that pesky mater of schoolwork, Thomas and his friends are still around, there's the countdown to our trip to be considered) but we frame our life around animals at the moment.

You may think I'm crazy. After all, the aim is to have a child that's as well rounded as possible, right? We should be encouraging our child to touch on as many subject areas as possible, right?

From my perch, high atop autism world, I say... yeah, right.

In the most loving, least cynical way... yeah, right.

I have mixed feelings about the issue of neurodiversity. I'm all about acceptance. I'm all about the world taking my son, and everyone else, for exactly who they are. And, at the same time, I am pitching for him to be able to live in the world in as functional way as he can.

With that in mind, my devious master plan for Billy is to use his loves and abilities (perseverations, if you will) to gaffer tape him to the world in a practical way.

When he was very young, we sucked the marrow out of every last minute of Thomas the Tank Engine. We learned colours and numbers. We developed language, we considered emotions, we made models and food and toileting all Thomas related. We travelled to see Thomas, we purchased the Island of Sodor over and over and over, we read and watched and talked Thomas. Thomas came with us to scary places. Thomas curled up in bed in hospitals. Thomas smoothed the way into the edges of street parties and restaurants.

And with Thomas in hand, we managed to kick start therapy, start pre-school and school, slowly take steps into serious kid culture like movies and birthday parties. Big steps... huge steps that would have been so much huger without our six wheeled friends.

The great thing about trains is that they brought us in contact with other kids. We stood near them at train tables in toy shops. We rode on the back of trains with them. We saw a couple at train shows (in between the adult collectors and trainspotters).

Now that Billy is almost eight (aaaah), animals have edged their way in front of the engines. So instead of smoothing our journey into the world with songs about useful engines, we're carrying a well thumbed copy of 'What Bird is That?' and making documentaries with the video camera on my iPhone.

Animals have (similarly) brought us into the world of children in a very useful way. In order to see the gorillas at the zoo (for example), one has to stand quite close to quite a few children. The zoo is generally full of children, of various ages, in various moods, all with very little desire to get up in Billy's face and drive him out of his comfort zone.

Zoos have provided learning, and comfort and joy to all of us. And when you are onto a good thing, go for it, I say. In fact, in autism world, when you are onto a good thing, you kind of don't have much of a choice.

Hence, the world record for zoo attendance. And a minor record in Thomas engine ownership (I believe we may have more Percy the green engine toys than anyone on planet earth).

In Billy's life, I hope we set more records. I'm pretty sure we will. I feel this because whatever our boy does, he does with passion and commitment. Like many young autistic kids, he does not waste his time with stuff that doesn't set his brain on fire. When he likes something, he loves it. He collects it, he owns it, he inhabits it.

We are fortunate he does not love farm machinery or drum kits or string, as some kids we know do. We feel deeply fortunate he does not love violent video games or superheroes. We see that he gets both enjoyment and learning from the things he loves, and so we support him and use those things as developmental leverage. Inside-out, kid-first, Billy-led development.

Many years ago, when we could see that our infant son had a spectacular memory for letters, yet he had lost his ability to use words, doctors and therapists told us he had 'splinter skills'. They said, 'do not be excited that he can locate letters accurately. It's a splinter skill. Totally useless.' Their advice didn't seem right, and it didn't seem fair.

I can honestly say it was not good advice. He may have been displaying splinter skills (whatever they are), but they were useful skills. We took his ability with letter recognition, and worked hard to translate it into a working knowledge of phonics. We matched the letters to trains, and the sounds to songs and subtitles on DVDs. We immersed ourselves in his interests and abilities, and it paid off in spades.

It continues to pay off, every day.

Through animals, we learn about taxonomy, hierarchy, biology, mathematics. In zoos, we consider ecology and people management and the vast overpricing of snack food. We observe the way animals work, the way public space operates and the way people make up crap when they are trying to impress their children with animal 'knowledge'.

In paying heed to Billy's passions, we legitimise his life journey.

I do not believe any child should be forced through arbitrary hoops, simply because history has laid those hoops for others. When autism is added to the picture, the wisdom of the arbitrary hoops is even less obvious. When you see that your child is not simply bored by the expectations of the system, but they are also threatened, bamboozled, disregarded... making a different choice doesn't seem such a big leap.

It's not just about schooling, it's about living.

We have no political agenda leading the decisions we make about our child's life. We have only love. We are not trying to make a point, we are trying to stay balanced. We are not trying to challenge anyone else, we are simply trying to keep ourselves happy.

And if finding happiness also secures a solid future, and a couple of random world records, so be it.

And if I can get myself some recognition for my encyclopaedic knowledge of potato chips and habits of the lesser Kardashians, the world order will be righted.

Splinter skills. Pffft.

Saturday, September 24, 2011

Because it's odd...

There have been a couple of times this week when my parenting brain has slowed to a snail's pace. This is not unusual, sadly, but it's got me thinking about the pointy end of meaning - the messages we want to pass on to our children.

When I was a kid, I heard strange things on TV ('wait till your father gets home!') and I read confusingly semi-inspirational things on greeting cards ('your potential is guided by angels') and I made up my own mantras ('keep your expectations low, so you'll generally be surprised' was one of my favourites).

Through a sea of nonsense, a bunch of things remained relatively meaningful.

I do think, if you look at the 7 year old, you get a fair idea who the adult will be. I do think finding your passion is a good thing, even better if you can finagle a way to use it to make a career. I suspect drinking a lot of water and eating as many green things as possible also has some benefit.

I looked to my parents, my siblings and my mentors for these gems as I grew up. More often than not, I found them on TV, in magazines and increasingly online.

It makes me wonder what life defining platitudes Billy will take into adulthood.

Last night, at a family dinner, he did a fine performance of a phone company ad. 'Don't just change your phone, change your phone company' is etched in vocally nuanced perfection in his sub-conscious, as are the remaining scripts from the ten other ads in the campaign. Including a rousing rendition of 'Give Me the Simple Life'. I hope that will mean something when he is old enough to actually need a phone.

He has developed the miraculous skill of translating kids' tv shows from one accent to another. So, although he has not left Australian shores (Yet. Give us a month and all that will change!), he can do a perfect Charlie and Lola in both English and American accents. He takes Super Y, and makes it sound like the British Royal Family doing their literacy homework. Should he become a super-spy or a voice over guy (both are clearly on the cards), these things will no doubt be handy.

Billy has also discovered a talent for finding YouTube clips that innocently depict kids video games, but are narrated by bored teenagers with a proclivity for profanity. We are very much enjoying the fact that the presence of Buzz Lightyear or Woody now has the capacity to bring forth a string of F, A and C words. Not. Having said that, I am not averse to a bit of swearing myself (don't tell my mother), so I guess some time in his life, these words will come in somehow useful.

On a slightly more serious note, we had a sobering chat this week. It involved the aforementioned phone ads, other kids and the word 'odd'.

I know we are not alone in scripting world, although I think we may be somewhere in the upper echelons of government. Billy is the king of scripting. He learns and recalls things with remarkable accuracy. It can be TV shows, movies, songs or, most recently, favoured advertisements.

I am cursing one of our major telecommunications companies, for a clever campaign that has been running for a long time featuring African animals. You may recall Billy has a real affinity with African animals. Now he has an affinity with the phone company that makes money out of African animals. He records the ads on TV, he watches them on YouTube, he finds them in newspapers and magazines.  And... he repeats them (like he did last night at our family dinner).

He is charming and cute (and very cheeky, as we have talked a lot about limiting the perseveration a little) as he masters every sound, vocalisation and dramatic beat of these advertisements. He knows it will get a reaction, but more he seems genuinely thrilled by his mastery.

In a safe audience (like family dinner), he gets a round of applause and a few befuzzled faces ('what kind of child recreates TV ads?', the older folk think to themselves). Among his NT peers, the reaction is quite different, and often involves some of the words Billy has only heard on YouTube Toy Story play throughs.

So, what's a mother to do? Well, in a scene reminiscent of 'THE' talk where many parents get themselves all wrapped up in knots trying to explain where babies come from without actually mentioning that it involves sex, which is not yucky, it's quite fun, even though it doesn't seem like it now, but you shouldn't think about that now because you are only a child, aaaah, why did I start this conversation... I tried to explain why it's probably not a good idea to do Optus ads around other kids.

I started with an affirmation of how very clever he is to be able to do such good voices. I extend to mentioning that Voice Over Guy is a very well paid and respected profession. I'm doing quite well, I think to myself, as I start in on the downsides of repeating TV ads.

Do you hear other people repeating Optus ads? I ask. No, Billy replies. As though he actually cares or notices for one nano-second what other people choose to do. Do you think other people want to hear Optus ads repeated a lot? I try again. Billy thinks about this one and replies, Yes. They see them on TV and they like them.

I think about this one. He's got me. That's kind of the point of advertising. I regroup.

When you are around other kids, maybe you should try not to repeat things. OK, says Billy. Then he asks, why? (I waited a long time for this word to be used. I should be happy. I am not.) Why? Um, I say (desperately trying to some up with a good, solid, meaningful answer that will transcend generations and become the title of my next blog entry)... because it's odd.

That's all I've got? That's the best I can do? Tell my son that something as natural to him as choosing his finger over a tissue to clear out nose boogies is 'odd'.

I tried to say 'odd' like it's a good thing, because I genuinely think it is. But I want him to understand that it loses its charm fairly quickly when all the other boys are playing Star Wars and you are singing the theme from a phone ad.

Like most kids, Billy gave me that 'thanks for sharing' half hug and ran off to learn some more swears off the computer.

Which left me wondering.

Some autistic people have a lot of social understanding. Some do not. Billy is somewhere in the middle. He wants to be out in the world, but he does not have a keen sense of curtailing his own activity to suit the goings on around him. Fortuitously, he is generally a calm, observe-y kind of child. It's just that what he is learning from his observation is the subtle nuances of the soundscape, not which fork everyone is choosing to use.

I'd love for him to be able to share his inner 'odd' with confidence, with the hope that it would be received with an open heart. I suspect that hope has as much chance of being met (the older he gets) as my hope that I will drop a tidy ten kilos without exercise or lettuce.

I don't imagine I am helping much with my ham fisted attempts at explaining the social consequences of Optus ad repeating. I may, instead, just join in. The jingle is catchy.

Or I would, if he would let anyone sing around him. That is a whole other story that makes me want to swear like Buzz Lightyear.

Tuesday, September 20, 2011

Sharks can bite me...

This is a cautionary tale.

It involves drugs, sharks and anxiety. Three things that kind of sit well in a sentence together, but are slowly making our lives unpleasant-er than they were before.

And I tell it in case someone else is facing a similar situation and is wondering if there's any reliable evidence of their fears. I'm not a big sample, but I am not making anything up. Which may (or may not) help.

I will preface this take with a tiny, contextualising kind of timeline:
 - Billy gets sick all the time
 - Billy's digestive system starts to shut down
 - We contemplate buying shares in a local underpants manufacturer.
 - Billy has breath that could wither a cactus
 - Mummy takes Billy to a well respected paediatric gastroenterologist
 - Dr Poo is full of... advice, including lots of drug recommendations
 - Mummy feels uncomfortable about drugs (see: Billy's life) but accepts Dr Poo knows poo
 - Drugs fix poo and reflux
 - Billy starts high pitched screaming at passing flies, animals and 'scary' noises.
 - Dr Poo says 'here, have anti-anxiety drug chaser for gut drugs'
 - Mummy makes effigy of Dr Poo and feeds it drugs
 - Billy reverts to natural supplements, halts normal digestion and hysterically refuses to walk past a statue of a shark at the Sydney Aquarium. Ever. Even after Mummy paid $170 renewing annual tickets to the aquarium. An aquarium we have been to a bazillion times before.  Also continues random screaming at imagined irritants and chooses to fall asleep with his hands, three pillows and a set of noise cancelling headphones over his ears.

End timeline, for fear of Mummy committing actual crime on the person of Dr Poo.

There are some of autism's joys we have been spared (in the past). Billy is not prone to self harm. Billy has not developed an interest in making art work out of his poo (perhaps because said poo is quite hard to come by). Billy is not a meltdown kid.

Actually, Billy was not a meltdown kid.

All through his life, as long as either Mummy or Daddy (preferably both) was close by, all was well at Camp Billy. We could avert crisis, we could anticipate disaster, we could talk him down from the edge of anything. As a result, we've been able to live a fairly normal life. I say normal, but I mean, it works for us. We have holidays. We have adventures. We have a lot of laughs. It's not a sit-com life (though it may morph in a Big Bang Theory kind of direction sometimes) but it works for us.

We have observed along the way that Billy has odd reactions to medicines, environmental chemicals and some foods. So, we have adapted our lives to those sensitivities.

This has included being very selective about antibiotics, being oddly entranced by the fact that cortico-steriods turn him almost netrotypical, taking all petrochemicals and bleaches out of contact with him at home, cutting out dairy and junk, eating organic and ceasing vaccination at 3 years. We have done these things in consultation with the relevant professionals (some medical) who have been helping us understand how the Billy organism functions.

Nothing revolutionary there. It's a route many families with kids with autism and other chronic illnesses have taken. Gets a few scathing remarks from Grandma as she clocks my expression as she sprays Christmas dinner with fly spray (hey, the weather is hot here in December, give her a break), but a bit of subtle under table feeding to the dog, and we're all even (except for her dog, but he lives with it all the time so I figure I'm not doing any extra harm).

So, when circumstances sent us into homeschooling, and gave us the opportunity to solve some medical mysteries (see: hard to come by poo, recurrent illness and the spooky ability to touch the back of his wrist with the fingers from the same hand) we jumped at the chance to meet some new doctors.

Billy's paediatrician, a grumpy and knowledgeable older man recommeded Dr Poo, and said he sees most of Sydney's autistic kids. Sounding good so far. Dr Poo is a smooth, professional with a set of tricks designed to disarm mothers just long enough to trust his cookie cutter approach to initial GI intervention.

This is where the whole issue of reliability in medicine gets really murky to me.

Reliability means tried and trusted. It means well tested and researched. It means it has 'worked' for lots and lots of people. All good, I hear myself think. I hear words like 'safe' and 'no side effects' and I think, 'Relax, Foley. It's OK.' Dr Poo may have even used similar words, though of course, he substituted the word 'Mum' for 'Foley' which is affirming my child's individuality in a reassuring way. Not.

Cut to the chase, and the administration of a PPI called Somac (to handle the reflux that resulted from the hard to come by poo) may have caused physical (non infection related cyclic vomiting episodes) and mental (chronic anxiety) side effects in Billy. Either that or the use of osmotic laxatives may have caused these things, because they did not exist before the administration of these drugs.

We have stopped the reflux drugs. We have stopped the laxatives, though occasionally they are necessary in combination with the natural supplements (otherwise the pain and the sacrifices to the great god of underpants begin again). The vomiting episodes have ceased.

The anxiety has not. It may be slightly less acute, but it is no less insidious. I have no idea whether it is possible to retreat from this. I don't know if permanent 'damage' has been effected, or if anxiety is a kind of door a kid walks through and then has to be coaxed back over his lifetime. I wish I knew. More than that, I wish the damn doctors knew.

Because they were quite happy to assure me of the safety of the drugs. They were insistent we had nothing to worry about. They were wrong.

As were the doctors who said continued vaccination was safe after the tongue swelling incident at his 8 week vaccinations, and the ones who said getting measles from the MMR was just fine, and the naturopathic ones who refuted the neurologist's claim that a homeopathic detox could have contributed to Billy's Transverse Myelitis.

You'd think I would have learned. I thought I had. Problem is, there's no reliable evidence backing up what I thought I'd learned, so I have no defence when doctors (other parents, therapists, grandmothers) insist that some drug or other would be safe.

It's like a game of 'There was an Old Lady who Swallowed a Fly', except with a real live child. I don't like the end of that song much at all, so after experiencing the ingesting of a metaphorical fly, a spider, a bird and half a cat... I'm not playing anymore.

While we retreat to the world of Dr Light Bottom (see my last entry) and his magical, mystical world of genetics, Billy and I will endeavour to defeat the scary shark statue.

Without drugs. Without (hopefully, eventually, somehow) anxiety. With organic chocolate (for me at least).

Friday, September 16, 2011

Doctors are people too...

... which is why I find it so odd that so many of them are allowed to be so robotic in their professional lives.

I get they need to remain detached. I get they need to be analytical. I don't get their reluctance to see a bigger picture than the one that is in front of them right at that minute.

Last night I stayed up very late making a spreadsheet containing all the pathology results we have ever received about Billy - blood, urine, spinal fluid, MRI, CT scans, nerve conduction studies, gut x-rays, renal x-rays, pithy anecdotes about the inside of his duodenum. 

It was an interesting process, not least because I am not (repeat not) a systematic thinker. My idea of a system is a mud map. Numbers, charts and formulae are not usually my cosy bed buddies. 

But they were last night.

And though there were interesting patterns (I coloured high results blue and low results red, just to amuse myself), I am obviously still no closer to understanding much at all about Billy's ongoing health. I finished my task, with a growing sense of grumpiness.

No, I hear you say. You? Grumpy? Never!

I wish I was citing the opening scene of the movie of my life, where a lightbulb (rising sun, angler fish, something bright and eye opening) appears reflected in my computer-screen-fatigued eyeballs as I finally crack the Billy code. Alas, it's more like a soap opera, where an ill-prepared, scruffy looking me walks out of yet another doctor's office clutching a soggy tissue and glaring at the receptionist for just a beat too long.

There's another light at the end of the tunnel, though. I'm hoping it is emanating from the nether regions of the geneticist we are seeing next week. I hope he's not feeling too much pressure. Even more, I'm hoping he doesn't take one look at my work of Excel artistry and decide I'm a (completely) crazy woman.

This goes to a wider issue in adult life, that I wish I'd never started to examine.

I grew up, for better or for worse, thinking that there were a few pillars of society that were constant and true. I hadn't really named them out loud, but now that the pillars are crumbling and I feel like a frightened 8 year old, I'm thinking they are - the health profession, law enforcement, the education system and perhaps politics. Religion, was easier to de-frock, when at quite a young age the nuns thought hitting me was a better option that answering my honest question about the chronology involving Jesus and the dinosaurs. 

Police are still kind of OK in my book. I'm skeptical but feel we're likely to be in a better state than we were in Joh's Queensland when I was a kid, so you know... Also I don't actually do anything that would raise their ire, or challenge their professional integrity. We kind of leave each other alone.

Unfortunately, I can't do the same with pollies, doctors or teachers.

I think the Australian government (on both sides) are behaving like over-privileged children at a birthday party. Doctors I've dealt with a number of times and you are probably well sick of hearing it. And teachers...? Well, this week, teachers redeemed themselves just a tiny bit.

We had Billy's annual review at his school - an urban base school for children who can't attend school for a variety of reasons (illness, remoteness or a job in the movie industry... I know, random, right?) I was fully expecting a rap over the knuckles for not achieving enough, or filling out forms wrongly or something (gun shy? me?) and what I received was something very, very different.

I met a group of educators with passion, compassion and insight. They knew their business very well. They understood the pressures on an autistic child, learning wise. They had read their files. They had come prepared with ideas and resources. 

The overwhelming message I took away was inspiring - a child with challenges should not be challenged by the education system as well. They should be inspired, supported and buoyed by the possibilities of learning.

Now, how many folk with autistic children would like to hear that little gem from their child's school...? 

We can argue the relative merits of homeschooling another day, but for now, I'm loving educators that can come up with stuff like that. 

It comes in a context of really shabby recent educational experiences for us. So seriously, they could have said, 'How's your day been?' and I would have burst into tears and kissed them. But these folk have gone a long way to restoring some faith.

Now... as long as I can get the doctors to agree, we can continue with this method of learning for another year. I am hoping, Dr Light Bottom (the geneticist), Dr Poo (though he is on my brown list right now) or the grumpy old paediatrician will sign the damn form. If they won't, I'm breaking out the snotty tissues and the piercing stares again. 

I want to have faith. I want to believe. Like Bob Geldof says, I'd feel quite relieved if I could lose myself in irrational assurance that everything was going to be just fine.

But autism, growing up, being stabbed in the eye by Billy's old school... those things wore my love of pixie dust down to just about zero. Now, I'm working on the principle, that if you look me in the eye and admit we could all do better, I'm on your side. 

So, Dr Light Bottom, are you ready for us? If I could ask a favour in advance, it would be... please, switch off your interface, and open your mind. I promise not to shake your hand and leave a damp tissue residue... 

I'm trying my best (though I promise to take your advice on how to do better).

Monday, September 12, 2011

Vomit in my mindspace...

This year has been full of examination for us. Lots of folk peering at, on or near Billy and sharing what they see. Doctors of various kinds, psychologists, therapists, teachers... the whole she-bang.

It's been interesting, eye opening, confronting, sobering, hilarious, frightening... I could basically take bites out of a thesaurus and make spit balls full of reflections on what we've learned.

And here's where we are.

Billy is awesome. He's funny and clever and full of enthusiasm and joy. He loves what he loves and he's blessed to be able to express what he does not love (in no uncertain terms). He tries hard, he is brave even when his best instincts are telling him to go hide under the bed.

And... as opposed to 'but' (because that's a negative mindspace, right?)... the promise of Early Intervention (ie. that your child might just lose the dx, might be imperceptible from his NT peers, could manage just fine with a bit of understanding) has not been fulfilled in our case. I'd say it hasn't been fulfilled in most cases, but that's a discussion for further down the page.

Perhaps we could have worked harder. Perhaps we could have pushed our toddler out of his comfort zone and forced him into therapy or groups we weren't happy with. Perhaps, perhaps, perhaps. (I feel a song coming on...)

The reality, looking at Billy and his cohort of EI peers, is that while EI has been really useful (in the same way that pre-school is useful in general school readiness for an NT kid), it has served as a nice little bridge through the troubled waters of diagnosis and school beginning. It introduced us to lovely friends who share the journey. It gave me an unhealthy attachment to instant coffee and homemade cake.

Early Intervention in Australia is not quite the same system as it is in the US, and seems like it might be similar to what happens in the UK. You get what you get. You find it yourself. You get what you pay for.  If you are tremendously lucky (ie. live in a well resourced area, happen upon a service with good people in it, have a tidy lottery win around the same time the A word raises its pretty head) you get good services. If you are the rest of us, you turn up and grit your teeth as much as you learn anything.

People who, since their recent employment, have learned an awful lot about autism invite you to workshops about 'special needs parenting' (which always made me wonder if I needed a diagnosis as well) and you quickly discover that the oestrogen telegraph is the most reliable source of practical information.

From EI, you make your own decisions about what next, and it's trial and error with therapists, services, support groups etc etc. Some make change, some make tears, some make giant holes in your wallet (or mortgage, depending on your choices).

Then you find a pre-school, a school, a small space in your kitchen and you begin the process of formal education.

By this point, you should (under the promises of Early Intervention and government funding) have seen the autism evaporate into a mirage of friends, birthday parties and the eternal soccer or ballet dilemma of the contemporary parent.

Or not.

Billy will be eight in November, and despite years of therapy, a shedload of supplements, a life with the least amount of stress possible and a style of parenting that has seen us both hanging out like dogs balls among more conservative folk... he's still autistic.

In fact, he's probably a bit more autistic (if that's possible) than he was when he was we started this journey. I say this because, though he has developed language (which we value greatly) and he has matured (for which we are grateful) it is very apparent that he is not in control of many faculties his peers have well and truly mastered. He is not well, health wise. He also has behaviours that, to put it mildly, are not even contemplated by NT kids.

Though we all may wish otherwise, he scripts endlessly, drawing his inspiration from absolutely everything he has ever heard. He grimaces and jerks his arms and upper body in a manner which can only be described (politely) as uncontrolled. He cries when the dog barks or someone coughs and this can start when he's asleep. He has to move his body every 2.3 seconds. He can concentrate for hours on Youtube and Minecraft, yet mere nanoseconds on handwriting or what someone else is saying. His IQ is in the intellectually delayed range, but he can flummox much taller folk in discussion about his favourite things, and his school work is at age level (now that we homeschool). I could go on and on (as I often do... wonder where Billy got that one from?)

The point of the game is that the autism has not gone away. It is not imperceptible. It is, in fact, markedly perceptible.

And here's the trap for new players.

Because we have been given a free ticket to the road less travelled, we are not too perturbed by the status quo. It doesn't change anything at all that Billy hasn't morphed into a repeat-free member of the First Fifteen. We're doing OK. In fact, a few rough medical experiences aside, we're mostly having fun.

But I see very clearly, that there are other families in a very different frame of mind. Like us, the first years of schooling have been sobering, dramatic and sometimes unpleasant. Like us, parent and child alike are struggling with all sorts of things - perceptions, sliding outcomes, morphing expectations, age equivalencies, resource availability, benchmarks and a bunch of other charming bits and pieces. But it's not even remotely fun.

Outside the autism community, people are struggling to manage their child and inside the autism community people are wondering why it all seems so hard. I'm guessing one of the reasons it's hard because someone somewhere said this disorder would probably disappear. And it didn't. Someone somewhere placed a statistically (and medically) improbable goal in their heads and they set their noses to the grindstone in order to achieve that goal. And it didn't pan out like they imagined.

This is not about good parenting or bad parenting. It's not about doing enough, or not doing enough. It's about life, and time and things just being what they are. It's about how much it hurts when you see your child struggle and you can't see an end to that struggle. It's about losing faith in a system that doesn't seem to understand you, never mind your child.

I guess it's about acceptance. Or not.

This is my kid. Warts and all. Grimaces and all. Violence, self harm, anxiety, ill-health, hoarding, food limiting, TV repeating, compulsive testicle tickling, not wanting to walk through certain doorways and all. Whatever you got, you got. Whoever they are, they are.

For those of us in the world of special needs, this whole game is often cyclic. Hit a wall, recoil, get angry, gather the troops and try a new tactic. The cycle is short for some of us, slightly longer for others and seemingly endless for an unlucky few. There are also those for whom the promises are fulfilled - a massive change, a loss of quantifiable behaviours, a vast improvement in health, and it is this what many of us hope is the way of the future.

But for now, we have the now. We have our kids. We have each other. We have a fight on our hands to find appropriate health and education services. We have an ever morphing picture of the future to taunt ourselves with.

As exhausting as it seems to keep moving forward, it seems even less fun to slide back. We have learned too much to stop now.

The roller coaster is in full forward mode. We've got our tickets. We're strapped in. No point in trying to send frantic signals to the operator now. May as well accept the possibility of a bit of vomiting, along with a few cool upside-down twists and turns.

I just hope no-one hurls too close to me. I can take autism, chuck can be someone else's department.

Tuesday, September 6, 2011

I'm at Hopeful Parents...

Reflecting on the sort of parent I have become, and how deep is the ocean.

Click through for a look around.

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?