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.