Sunday, December 16, 2012

Stand by...

The forces are rallying.

In 2013 (Mayan Apolcalypse, not withstanding), I'll be back. Re-branded, re-polished, re-energised and re-focussed.

Fewer charming anecdotes about living with autism, more information and social action.

Though I may throw in the odd poo story, because I know how much you love them.

Sigh. OK. So do I.

Tuesday, October 2, 2012

The screeching of brakes in the theme park...

I'm not sure where to start...

I think I'm done blogging about autism.

There we go. That's a start.

I'm not much of a systematic thinker, so I'll just make a list. It won't be a long list, I promise.

1. I'm over it.
(the most pathetic reason)

My feelings about writing here (and elsewhere online) have changed, pretty much overnight, though I've been chewing them over in my mind for a month or so.

I've spent three years sharing stories about Billy and our lives hoping it might guide one person towards any one of the a-ha moments I wished I'd had along the way. I'd like to think that did happen a few times. But right now, I'm either whining or repeating myself.

Even I am bored with the sound of my own voice.

I have no access to policy change. I am not mates with any politicians. I have no inroads to make medical change.

I have come to believe I am dancing in a long tunnel, and as enjoyable as that has been, I'm not Alvin Ailey.

2. It's too hard all of a sudden.
(the most upsetting reason)

The viciousness and vitriol in autism world, right now, is too much for me.

Plain and simple.

It either didn't bother me before, or it didn't happen before. I'm not sure.

It bothers me now.

It bothers me that some people tell me there's no way I can love my child.
It bothers me that others assume I don't value my child.
It bothers me that people give me unsolicited advice that assumes I have not thought about whatever they are talking about.
It bothers me that people confect stories that draw attention to themselves with no acknowledgement of the responsibility inherent in sharing those stories.
It bothers me that when disagreement occurs, I would rather argue the point, not the man, but that is rarely what happens.
It bothers me that the level of discourse is often reduced to 'you believe (insert anything)', so 'you cannot possibly understand (insert anything else)'.
It bothers me that people tell other people what to think or say or do, as though we all agree on what is right.
It bothers me that anyone with an opinion is fair game for people with an opposite opinion.
It bothers me that people want to bring other people down by somehow proving their reality to be untrue.
It bothers me that truth, in this game, is elusive and compromised and that concept goes unacknowledged in a lot of what masquerades as 'discussion'.
It bothers me that any of this bothers me at all.

I could be doing so much more than being bothered by things and people I have no control over. Over which I have no control.

The whole preposition thing bothers me too.

3. Autism is getting worse, not better.
(the most depressing)

It's having more of an impact, not less of an impact in our lives, and in the lives of most people (if I'm genuinely honest). It has not gone away in any sense. For us, it has become more serious as time has gone on. We are facing a future that no-one prepared us for, no-one even mentioned as a possibility.

It is our life, and so it is wonderful. But it is also deeply confronting and serious and unpleasant.

Being told this is trivial, or irrelevant (as happens with phrases like 'you should just calm down and enjoy him', or 'we're all a little quirky', or 'you can't love your child if you hate autism') is seriously the hardest thing I've ever had to hear.

I need some distance from that. Not distance from my life, or my child - distance from the proclamations of people who are speaking about themselves, and not me or my child, but are not aware there's a difference.

I've always tried to use Billy's life as a springboard for thought, here. It's not universal fact. It informs the way I think, but it has never limited the way I think. It's clear to us that Billy is atypical in many ways (and I say that with no value judgement attached), so making him some kind of poster boy for autism would never have made sense. Making any one a poster child for autism would never never make any sense.

In addition, in this country, at least, I am overwhelmed with the lack of insight and the lack of real, meaningful, compassionate action in regard to autism.

I see lots of people fighting for their moment in the spotlight, some with more altruistic motives than others. I see lots of people spruiking services that are of limited use and are increasingly both gut wrenchingly expensive and backed by questionable, yet 'endorsed', evidence. I see the medical fraternity distancing themselves from the medical nature of autism, only accepting it when the crisis has already occurred. I see more and more kids being left behind in the education system because their needs are too unique for the mainstream and not eligible (or appropriate) for the special needs sector.

It's dragging me down.

It's not a game, it's a reality for us, and for so many people we care for. It is becoming more confronting, medically and logistically, to live it. Our kids are getting older, oddly, and words like 'quirky' and 'different' and the need to tell people to celebrate those things have sunk further and further away from our daily hierarchy. 

Those sentiments have become Hallmark cards, and there are plenty of people selling them.

I can't say any of those things in a new way, and even if I could, I wouldn't. But that's because we, as a family, have been catapulted well past them. If Billy was already an independent adult seeking acceptance and understanding, I'm sure I'd be right there wearing the t-shirt.

I'm happy others have that message in hand, because as things stand, it is the smallest of our concerns.

4. It's not the same as it used to be.
 (the last one)

By 'it' I mean the blog, the online experience of autism, the reason I found myself rabbiting on in the first place.

Online boards used to be crucial to me. They were, literally, the saviour in the middle of many frightening, confronting, dark nights. They were my lifeline, and the source of so much new and useful information. The women and the children from those boards remain incredibly important to me, but the information is no longer the primary reason for my logging on.

Facebook has a different menace. I still learn a huge amount, and treasure the generosity and passion of people, but it's not like it used to be. The cameraderie is gone, in many ways.

And here's why I think this has happened, in my life at least.

We were all, in many ways, a part of a new social (media) movement.  Trying to explain the concept behind The Autism Experience to my mother, was like her explaining the metric system to her own mother.

'You are writing a book with people you have never met, about children you don't know and a condition no-one really understands... ooooooh kaaaaay, dear...'

We were all full of energy and enthusiasm, and our children were mostly at a similar age (seriously, what happened in the world to hit kids born from 2000 or so onwards quite so hard?). We had a lot to talk about, a lot to learn and a lot to hope for.

Flash forward five years or so, and it's a very different story.

The kids have grown to inhabit very different places on the spectrum, even very different places on the health spectrum. We all drank the same (or similar) kool aid, and the results are remarkable in their lack of similarity.

Maybe, it's harder and harder to 'help' each other, when our children are seemingly living with different conditions. I'm thinking they were probably quite different when they were tiny too, but we weren't being encouraged to see them that way. Handling a two year old's speech delay, is handling a two year old's speech delay, until the speech comes or doesn't and you deal with what you've got, if you know what I mean.

Right now, though, in The Autism Experience cohort alone, we have every kind of autism story you could hope for, and there are so many conflicting emotions tied up in 'sharing' the way we used to. And that's before we get to the philosophical, medical, political, cultural differences between us.

I want to be a part of autism world because I care about the people that I have met along the way. I care about the fact that our numbers are growing and no-one in a position of responsibility seems to be demonstrating much care.

But most of all, I care about my family.

Every single fibre of my being right now is saying, 'do not turn your back on this'.

And yet, 'this' has become something I don't understand anymore. I don't know what autism is, I just know it's not a roll of the dice. If it was, a lot of us would be scared off board games for life.

There is not point in blogging about something I do not understand. That would make me one of the people that bother me. It makes me complicit in the very behaviour that bothers me. It makes me a part of the spin machine that is diluting a critical message.

Here is what I tried to impart in three years of blogging. In one paragraph.

Autism is a giant issue and it's getting bigger. Whether it's the quirky and misunderstood end, or the severely physically and intellectually disabled end, or anywhere in between... for now, it's all the same condition. It might be preventable. All of us sitting on our hands, defending our own patch is one thing, but the change required to get a handle on the condition is huge. Whether we think it's something to welcome, something to curse or something to tolerate - autism needs serious amounts of resources that do not exist currently. The work that is required to establish these resources is immense, too immense for me to conceptualise, but there is no denying it.

I've loved being in contact with you all, but the fish in our frying pan are threatening to jump.

Lest I start bleating, or blubbering, let me say goodbye (and thanks for all your fish).

Here's my unsolicited advice, in case you are new to the game, or a glutton for punishment.

 - If you don't already, read Age of Autism, read A Diary of a Mom, read The Thinking Mom's Revolution,  read John Elder Robison, follow Autism One, keep up with Generation Rescue, listen to Tony Attwood, keep up with Dr Jerry Kartzinel and Dr Martha Herbert, go back and read Natasha Campbell-McBride and Jacqueline McCandless.

 - It is not required that you agree 100% with anyone or do what they say, but it is required that you respect them and everyone else you meet along the road.

 - Be nice. It's like organic food. It helps, even if there's limited proof.

 - Get over yourself and your own story. Yours is not the only story, and everything can be gained from acknowledging that you are sharing this road with a diversity of people with a diversity of needs.

 - Listen to your gut. No-one knows everything, but you know a lot about the things that matters the most. The rest, you can Google.

 - Put the autistic person you know first, yourself and your family up there beside them, and all the other stuff somewhere behind.

 - Don't let the turkeys get you down. It'll make you do stupid things like this.

I've got a few plans and a few ideas, and they may end up somewhere in cyber space or air space or real space, but... the rollercoaster has ground to a halt.

If only that was true of our actual lives...

Thursday, September 20, 2012

Moving the goalposts, again...

I'm not sure why, but I've hit a wall in autism world.

Maybe I need a holiday, maybe I've reached my limit, maybe autism world is hitting a wall and I'm just along for the ride... who knows?

Here's where I am, and here's why.

I spend a lot of time on the internet reading about autism. I read a lot of studies, I read a lot about the issues around the condition, I talk to people, I listen to people, and occasionally I can't take it any more and I assert an opinion different to someone else's.

Most of the time, I do not engage with the opinions of others, especially not on their blogs or facebook pages. This is because I do not see the point in trying to convince someone to think differently. What anyone else thinks is what they think. In autism, especially, this diversity is key. As much as it makes my gut churn, I value it all, whether I agree or not.

Two things make me struggle with my posting fingers off policy.

One is evidence wars - we know this to be true, therefore this (other evidence) is incorrect.
Evidence, schmevidence. The agenda behind and validity of any evidence are much more important considerations in my mind. Anyone who has done research 101 knows you can prove any hypothesis with the right strategy and the right language.

The other is when when someone else asserts something about me or my role in my autistic son's life that I find either offensive, or grossly counter productive.

It's this second one that has me changing my behaviour this week.

And it has made me decide to pull myself right back from this game. Me, personally, I mean.

I'll still write, and I'll still share information that I think is valid, but... the ugliness that grows from online discussion about autism is not something I want to take into my personal life any more.

I understand why intense discussion is necessary. I totally get how easy it is to be drawn into it. I completely accept the need to assert one's place in an argument. These are all things I see and do all the time.

The thing I do not get is the need for homogeneity, for consensus, and for trashing the views and stances of other people. Disagree, for sure. Agree to disagree, absolutely.  Accept that people think differently for good reasons of their own, makes sense.

Insist others are wrong, not so much. Force people to stand in factions, don't get it. Sling abuse, not for me.

The challenge for me in all of this is that here seems to be an understanding among people who talk about autism that there is a pool of information that everyone agrees on. Then, while swimming in this pool, we set about arguing about who is more right. 

But really... what is it that we all agree on?

What autism is...? There are a billion views on this one.
What to do about autism...? Runs the whole gamut from nothing to eugenics.
Whether autism is increasing...? There's a million ways to skew the numbers.

What we do have is both a community and a growing industry that have developed separate arms around any number of the perceptions about the above issues.

Each arm promotes its own perceptions, as it should. Some arms have grown into political movements. Some have grown into companies providing services and resources. Some are still at a grassroots level. Some are groups of like minds. Each one of these groups has a different reason for being and a necessarily different way of communicating their message.

And yet, so often, discussion about these groups, and between these groups takes no account of the functional differences between them.

So, parents hate political campaigns because they don't like a personality attached to them, then dismiss every single thing that campaign espouses.
Or doctors dismiss service providers because their version of valid evidence differs, then encourage parents to avoid said services.
Or supporters of philosophical standpoints deny the validity of other peoples' standpoints because they are different to theirs, and then spend hours arguing about apples and oranges.

It's nuts. And I guess it should be nuts, because nothing is really changing to make it not nuts.

But from now on, the nuts can happen around me and not include me.

I do not want to give up on making change in autism world.

More than ever, I think quantum active social and political change is required.

I think this because the very diversity that splits us into factions, is a big flashing sign that the condition has changed and continues to change rapidly and frighteningly. Therefore, what we have been doing cannot possibly be enough.

I think we need to stop pretending we know what we are taking about, set about defining it in a cohesive and inclusive way, and then get about doing something about it.

I don't think we should hamstring ourselves with nonsense about who is right, or worse, who is more right. I think we should accept that everyone is right and use that awareness to move the hell on.

I think if we don't, we will face a nasty (er) public health crisis in the future than we are facing now. I think if we don't, we are not doing our children or future children any favours at all, nor are we valuing the experiences of autistic adults.

I completely accept that this is my view. Many, many others think completely, completely differently. And some of them have much better political/social purchase than me.

If I was a politician and my fingers were fidgeting with the zip on my autism funding wallet, I would be bemused by the autism community. I would be asking myself what they want, and maybe wondering who they actually are. And then I would be giving my money to the ones who mount the most convincing argument. Or perhaps the only argument.

Right now, in this country at least, that's service providers with their attractive looking data and credible business models. They have autism handled, right?

Tick the box. Move on to the (insert other disorder) community.

Surely we can do better than that? Surely we can include more of our community than that. Surely there are more diverse issues to consider?

How do we make change? Buggered if I know.

I tried a song a couple of ways. I tried a book. I try on here.

As I am no closer to actually achieving anything close to social alteration, never mind social change, I'm opening my mind to any strategy - sky writing? inflatables? interpretative dance, perhaps?

But first, I'm buffering myself a bit. I'm stepping back and hiding behind the wall I hit. This game is rough, and I am not. No mater how much I want to be.

Also, I dance like a dog, so maybe the interpretative dance is out.

Sunday, September 16, 2012

Why we need to talk...

Billy will be nine in a little over a month. He is a long, tall boy now, though he's still all cheeks, ears and eyes to look at.

He is, now, as he was the moment we realised we'd made him, the most excellent child I could dream of. Of which I could dream (who invented that rule, seriously?)

As each birthday has approached in Billy's life,  I have collected the previous year in artefacts - videos, photos, collections of zoo maps. This year, I'm going to do it here. Now.

It's a little premature, but I'm imagining it is going to open a few cans of worms, for me. I'll need to work on catching and containing my squiggling reflections in the intervening 50 or do days.

This time last year, we were in the final stages of preparation for two gigantic events. Three, if you count Billy's birthday.

The first was a mediation session in the Australian Human Rights Commission, aiming to secure an apology from Billy's school for their unlawful actions towards him and us. The second was our first overseas holiday as a family.

I was 10 kilograms heavier, 10 years older and 10 kinds of crazy.

We secured the apology. We got on the plane, and we started a new countdown.

Consider this the 2012 Jump on the Rollercoaster clip show.

10. Billy takes to international travel like a pro.
With his toy wombat under his arm, and an Apple product tucked dangerously close to every vital organ, he flew - literally and figuratively. No-one was more shocked than me at how well he handled the rigors of long haul flight, long haul driving, changes in food, new friends in every city, new everything every day.

We kept a diary, we bought a lot of maps, we walked a lot. We listened to him and gave him space when he needed it. He listened to us, and felt safe and happy. There was one jet lagged vomit, a teeny tiny San Francisco runny nose and a scary moment at Disneyland at night when he decided Captain Hook was coming for him.

Beyond that, he had the time of his life.

9. Billy does Christmas.
Billy is the youngest grandchild for one grandmother, and the only grandchild for the other. He has a broad variety of excellent stand in grandfathers (step grandfathers, grand uncles, mentor type folk), but a devastating lack of blood-line grandfathers. I am digressing, to divert from the gigantic bandit-like making out that occurs every December in Billy's life. He is treasured, and that results in treasure. Seriously.

Also, being Billy, Christmas (read: peak tourist season in Australia) doesn't divert him from his favourite zoos in the north of the country where the abovementioned grandpersons live. Think over 35 degrees Celcius (north of 100F), grumpy children, bored teenagers, overly enthusiastic parents and... us. It's awesome, in opposite world.

This year, we went to Dreamworld - name unintentionally ironic. We went there because they have tigers and an 'animal park'. I use inverted commas, because many of the actual animals had been replaced by stuffed animals (in cages, I kid you not) and the tigers were asleep which made them invisible behind the wall of bored teenagers, who were also sunburned and queasy from rollercoasters. Dream, it was not, unless it's the kind of dream you have after too much MSG.

Billy loved it, and wants to go back.

8. Billy has a 'mental breakdown'.
One day in January, Billy took to his bed.

There were various precedents (neighbours and local council getting busy with industrial amounts of Roundup, a particularly difficult set of blood tests where I may have had an accidental intimate encounter with a phlebotomist while briefly restraining Billy, a planned trip to the movies - I know it's supposed to be fun, but for us, as for most autism families, it's never the deeply relaxing prospect it should be).

Anyhow, a sweaty and floppy Billy lay in his bed and refused to leave for a couple of days. He repeated a lot (and not in that comforting echolalic way we are used to). He stared a lot, twitched a lot and made some very very unusual repetitive movements with his upper extremities. We took him to the doctor, who viewed video of the repeating, staring, twitching, repetitive moving and pronounced it a... 'mental breakdown' (no, I hadn't heard that phrase used since I saw 'Valley of the Dolls' through a crack in the living room door as a child, either). She suggested a trip to the psychologist (see Billy gets comfortable with things he's already comfortable with) and gave me strange looks as she wrote the referral to a neurologist I demanded from her.

One day later, at 5:45am, Billy had his first generalised seizure.

7. Billy has epilepsy.
It took three EEGs, two neuro appointments, one MRI and a partridge in a pear tree to get this diagnosis. For new players (and we are very very new) can I give you a heads up about looking into the mysteries of heads?

If the word seizure is suggested in relation to your child, you will be offered an EEG. They will first try to sell you on a short EEG. Unless your child has massively apparent seizure activity, or you regularly win lotto, you will not see a seizure on a short EEG. This will mean a line will be drawn under the question of seizures, until your child has another seizure. If you are genuinely concerned about seizures, and not simply looking to draw random lines under health fears, ask if there's any chance of a longer EEG. There may not be, but it's worth a shot.

There's also the questions surrounding the links between autism and epilepsy and seizures and sub clinical discharges and... Actually, I'm going to let you google those yourself if you are keen. You'll probably make more sense of it all than I've managed to so far.

Billy is handling this new addition to his file with style, grace and the odd bit of scary language ('my eyebrows won't stop buzzing' is one of my favourites).
6. Billy gets mega healthy
The seizures gave us a bit of a kick in the pants.

We though we were doing OK, health wise, but really we weren't. Billy was CF but not GF. He was eating a grand total of maybe 10 things. They weren't bad things necessarily (OK, the chicken nuggets weren't made of hemp seed, but they were the only animal protein he would eat) but they weren't great either.

So, we started juicing. We added plant based omega threes (fish oil made Billy leap through the air like a salmon). We added probiotics, then prebiotics, then more and more good clean organic foods as his gut healed. We added a multi-vitamin formulated for kids on the spectrum. Finally, we nixed the gluten.

Each and every step along this path was taken so slowly Billy barely knew it was happening. We took baby steps. Actually we took baby beetle steps. Teeny, tiny steps. We're still walking this way, and will for the rest of his life. The change is miraculous (no drugs in his GI life, really noticable changes cognition wise) and it needed to be because the seizure activity has further complicated Billy's ability to focus.

5. Billy gets comfortable with things he's already comfortable with
OK, that's a little harsh.

Billy did CBT - cognitive behavioural therapy. He did it one to one with a very lovely, positive, clever young psychologist. It taught him what anxiety is, what it feels like and what to do about it. It's useful, it is. On a surface level that may well allow him to distract himself from the possibility of running onto traffic to escape a painful sound. It reminded me that behavioural therapy is not my favourite thing, and that life is really all about managing risk rather than eliminating it.

Billy has a toolkit, and a bunch of new reasons to suspect his beloved dog is actually his enemy.

4. Billy avoids schoolwork.
He is an almost nine year old boy, after all.

Distance Education continues to be his preferred mode of learning, and so it is ours. He needs an adapted program, and he was not receiving that in the 'system'. He is quiet and compliant. He is not a behavioural disruption. He talks. Ergo, he can cope.

But he can't. He doesn't. He doesn't even survive. He is depleted and exhausted and saddened. He is very clear about the stress he felt at school and pre-school. In addition, we now know from our adventures in neurology, that those stresses have a direct impact on his health. So, it's a no brainer.

Billy needs calm and time and space, so that's what he gets.

3. Billy gets an adjusted prognosis.
It's been a year of new thoughts about Billy's future.

Up until the last couple of weeks, we had kind of assumed that Billy would make his way through the education system (in his very own unique way) and probably find a way to study post school (again with modifications). We thought he might live independently (quirkily, but independently) and we thought he would probably hopefully have an independent but quirky relationship... all the stuff that I read was possible for 'high functioning' autistic people. We bought the PR. We invested in the t-shirts.

It's unlikely to pan out like that according to his neurologist.We always had concerns beyond what we were told. We tried to get answers for those concerns. We tried to make sure his life accommodated those concerns. We had people tell us we were wrong. Oddly, not medical people.

Anyhow, they were wrong. We were right. It doesn't feel good to be right this way.

2. Billy continues to be awesome.
This new information doesn't change much in reality.

Billy is brilliant. He is insanely funny. He is inordinately happy. He is incredibly clever. He can do stuff that I can't dream of doing. He has amazing ideas, and he has enough follow through to make them happen. He has an immensely good sense of himself, he is very clear about his own limits and he is fearless in challenging them.

He is beyond the child we dreamed of... he exceeds the child of which we dreamed.

We continue to do what we have done since the first moment we knew he existed. We love him like we have never loved before. We listen to him. We put him first.

We do every possible thing we can to ensure he is well and happy and Billy.

We don't belittle him. We don't infantalise him. We don't think he is 'less than'. We don't misrepresent him. We don't pity him. We don't find him a burden.

I speak about his challenges in the hope it might help other people facing similar issues. While some may see this as a self aggrandising grab at notoriety, I see it as an opportunity to give other people a heads up. It most definitely breaches his privacy, and as his parent, that is my choice. As much as he can understand, as an almost nine year old, he does. When he is 18, he and I can slug it out about the fact that strangers know how his bowel works.

Here's why autism parents need to talk.

Autism world is full of information. Some of it is relevant. Some of it is crap. Some of it is pure spin. Some of it is genuine gold plated messages from the gods.

There is no way of knowing what is relevant to you and your child. No way. The doctors can't tell you with any authority. The teachers sure as hell can't hand you a crystal ball. You get the diagnosis, and then you start... doing. Blindly half the time, but driven by the hope you are doing the right thing. Hoping blindly that you are driving in a useful direction.

As a parent, there is nothing worse than not knowing what to do to help your child. It's not because your child is a hopeless case. It's not because your child is worth nothing. It's because they are your child.

You want to help your child because they are everything, because they are the moon and the ocean and the dinosaurs and the phosphoresents and the first star of every single night. You want to help because every single fibre of your being is buzzing with the message that you should. You want to help because you knew from the moment your child existed that you would, no matter what stood in between you and them.

Like it or not, there are days when autism feels like a giant brick wall between you and your child. Other days it feels like you and your child are behind the wall, and the rest of the world can't see through. Like it or not, autism is the thing you didn't expect. It's the new information. It requires... orientation. Acceptance is a given. Awareness is what we live.

Let parents be parents. Let us play our part. No matter how it looks from your point of view, whoever you are. Other parent, autistic adult, teacher, doctor, neighbour, crabby old lady at the shops... have your opinions, but share them sensitively. Share them with the knowledge that our children, who are autistic, are our children. Not our possessions, not our projects, not our experiments.

Our kids. That we dreamed of. Of which we dreamed. Ugh... isn't there a song about this?

As a parent, you want your child to have access to the world - whatever that world means to them, however they see the world, whatever they want to do in the world...

So, we get to the end of this year's countdown.

1. Billy plans a new holiday for 2013.
The first one worked so well, he's ready for another shot at the world. On his terms.

Monday, September 10, 2012

What's your problem...

Gosh, autism world is a grumbly place.

Everybody's got a gripe of some kind. Perfectly legit ones too. It makes me slightly uneasy that if I ran out of actual challenges, there are so many more disgruntlements to cherry pick from around the community that I have good reason to never laugh again.

Doctors suck. School sucks. Vaccines suck. People who talk strongly about anything suck. People who have opinions different to other people suck. Parents suck. Parenting sucks. Food totally sucks. The diagnostic process sucks humongously. Research sucks. Genetics seriously suck (though this one really truly confuses me). Medication sucks. Therapy sucks. Everything sucks.

Seriously, I'd be hard pressed to find anyone (including myself) who lives in autism world, who doesn't believe that quite a few of the things I've just listed suck. The others have their own lists.

Here's the thing, though.

Things do suck, at times. At different times for each of us. Sometimes permanently, but mostly it's transient. Some of us cope better than others. Some of us barely notice. Some of us are moved to roll up our sleeves and devote a fair proportion of the lesser sucking portions of our lives to making change (in the hopeful thought that perhaps it might not suck as much for people in the near and far future).

And yet, autism world being the rich and complex place it is, admitting things suck is somehow not permitted.

As soon as one person says something doesn't make them happy, someone else comes out with a statement about how that offends them to their core. If you express frustration as an autism parent, then you are offending autistic people. If you express frustration with your child's medical situation, you are offending people who don't believe their child is sick. If you express frustration about your own vaccine choices, you are offending people who believe their choices were the absolutely correct ones.

I guess feeling offended is a perfectly legit frame of mind, but... is expressing it helping anyone?

Are there some things, we talkative autism folk should think about keeping to ourselves? Does it gain anything at all to justify your position as a counterpoint to someone else's?

It's not like we're blogging or commenting just for our own mental health. If we were, we'd keep a private journal and leave it at that, right? We must all have really good reasons for opening our mouths, surely?

Sometimes, when I have nothing else to do, I search around the internet to see if I can find the equivalent of the intense factionalism of autism world in the online expression of other medical conditions. I see bits of arguments around hearing impairment, especially in relation to cochlear implants and sign vs speak. I see broad discussions about advocacy and normalisation. I see lots and lots of detailed, validated information and campaigns seeking cures in conditions that strike children.

But in autism world, among rare gems of articulate, passionate (often very dogma-specific) wisdom, I see a lot of indignant 'you offend me' responses to blogs and articles. I see a lot of attention seeking , stating the bleeding obvious behaviour. I see an almost frantic need to be right (and to call out those who are 'clearly' wrong) in a realm where right is very difficult to define.

And I do not get it.

What's the saying? 'If you've met one person on the spectrum, you've met one person on the spectrum?

So, crude extrapolation makes me think something like... if we accept that all autistic folk are allowed to be different, we all must have very different stories as autism families. If we all have very different stories, then we must all have different experiences.

So, if you are angry because you feel like you were promised vaccines were safe and they weren't for your kid, then... that seems, to me, like a fairly valid reason to speak out. Especially if you have rolled up your sleeves and committed a bunch of your non-suckful time to making the change you believe is necessary. Coming from that perspective, to me at least, desiring change seems like a fairly valid standpoint. No matter how that is expressed, and no matter how it might differ from what I have lived.

If you are elbow deep in faeces paintings and you're not thrilled about that fact... I hear you. I can't imagine cleaning poop repeatedly off surfaces not intended for such things is fun. I'd want change too.

If your child was unfairly restrained/illegally assaulted/illegally discriminated against (like there's legal discrimination...) then, go for it. Shine a light in a dark corner. I can learn a lot from hearing about it.

If you are going through the motions of life and need a moment in the spotlight, do that too. It's tough to do that without making a hero out of yourself, in my experience. And that feels wrong to me. But, each to their own.

A little side note here. Genetics. I do not get why people are so dead against trying to understand  genetic information around autism. I don't want it to be the only thing, but... I do want to know some things. I can't help thinking if I'd known Billy was as vulnerable as he is, pre-birth, I would have made some very very different decisions about what I put him through in the name of public health and modern living.

I hear people spouting arguments about a hidden eugenics agenda and I think surely that's not a serious concern. (FWIW, I think this is trivial because believe what people choose to do with pre-natal information is their choice).

I hear people talking about wasting resources and I think, sure, I would like the resources spread throughout a range of research areas, but as I am not gaining profit from the outcome of said research, I'm guessing my wishes about research diversity are not high on the priority list... unless I start my own multi-national drug company which is unlikely given my chosen profession of Children's Television).

I think I must be missing something on the anti-genetics research front, but... that's nothing new. I'll add it to the list of things I need to get a better handle on.

Back to the autism community, minus my genetics confusion.

Here's my take on things.

Autism is relatively young, as the condition we see currently.

Autism is a frighteningly diverse condition. Some people take its emergence in their stride, others do not. This may have something to do with the differing effects it has on the bodies, minds and lives of the people who live with it. Or with the experience or psyche of the parents. Or with the phase of the moon, size of the trees outside or something...

Autism requires a massively different set of parenting skills depending on the aforementioned diversity, and perhaps the psyche/s of the parents.

Autism is something some people accept, some people turn into a personal cross to bear, and some people interpret as a call to action.

Autism has given some people a reason to raise their voice - in person, on screen or in print.

Autism has grown, for some, into a political movement that harnesses the full force of their raised voices to effect the change they deem necessary in big picture social/medical realms. In politics, the loudest voices effect the most change.

How these raised voices become a source of offense for those of us who do not take the opportunity or have the courage to yell, is seriously beyond my cognition.

It's not like there's some autism census and if we don't fit the profile, we're going to be struck off the roll. If you don't agree, you don't agree. If you don't think we need to change, then all that's going on is that you disagree with the people who think change is necessary. Sit back, and revel in the status quo. We're not required to all vote together.

If you think something different to the loud-voiced message is necessary, stand up and yell your message. Surely the diversity of the condition allows for that.

In our case, we have an uncommon combination of vaccine injury and medical crisis. In my IRL friends' cases, there's gut wrenchingly severe all around unsupported-by-the-system disability, degenerative illness, burgeoning behaviour crises, devastating mental illness of suspicious origin, fully recovered, needing minimal support, chronically high achieving and quirky... the whole gamut of autism experiences.

What links us as adults, is the fact that we all gave birth to children who ended up with a diagnosis of autism. 

We don't all agree about what needs to happen in our individual cases, or in autism broadly. We don't all play the same role in our various communities, in autism related matters. We do all agree that we want our children as healthy and happy as possible. I don't think my group of buddies are all that different to any other group of parents.

Yet, often discussions about our diversity of needs ends up in curiously pointless tension, as though it's possible (or necessary) to come to some kind of social media consensus.

By admitting that some things suck in my world, I am not telling everyone their lives suck too - we all have a different day to day measure of suck. By detailing what's suckful, I am not pointing universal 'this sucks' fingers at anyone - what sucks for me might be a day at the park for others.  By agitating to change the things I call suckful, I cannot expect consensus.

How could we all want the same thing? Remember the whole, 'you've met one autistic person...' idea?

Here's what I do know, though.

If I was able to get myself close to those in positions of decision making power, I would make sure I had been briefed by every single stakeholder I could identify. I would read and talk and listen and watch. I would do my damndest to have as broad a background as I could before I opened my mouth.

Would I say what I thought was important, once I was in front of the power brokers, though? You bet I would. If I had worked my behind off to get to that meeting, I would, for absolutely sure push the agenda I value. Would I feel informed by all I had heard/seen/learned... sure, I would. But, you don't get to the politicians without being political. And you can't be political without playing a good spin game.

A blurry, soft indistinct message doesn't fly. A maintenance message doesn't need to fly. It's already up there.

I know how much work it takes to get any voice heard in the corridors of power. I have ultimate respect for those who devote the time and energy to make that happen. If they happen, in autism terms, to be people I don't agree with, then more fool me. Maybe it means my message hasn't got political legs. Maybe it means I should get off my chair and take some voice lessons.

In this last week, as the serious life-long nature of our son's challenges have been driven home to us, I have settled on two clear messages. The first is simple... it sucks, and no-one on a different journey can tell me it doesn't. It may not suck forever, and I appreciate the caring platitudes very much, but it sucks now.

The second is that being given this news in the context of a condition that has no known origins and no known causes and no known cure... is not good enough.

It's not even close to good enough. It might be for some and their perceptions of the condition they live with, but not for me and what Billy has. I can't imagine I would be doing the future any kind of favour if I just quietly accepted this, mused about difference and had another coffee.

Accepting and loving autistic people, does not mean accepting and loving the fact that the condition exists for no known reason, with no known cause and with no known cure. I do not accept and love the fact that it is a non-specific amorphous umbrella that continually whacks my child without notice, even if it doesn't whack others in the same way.

So, I guess I'm saying, permit us our grumbling. Allow us to revel in the suck. Try not to be offended, there's no point. It's coming from a place of honesty. It's actual, genuine passion. It's real life. Poop and all.

And from here, surely, the only way is up, or out, or around... no matter to me, as long as it's different to now.

Thursday, September 6, 2012

At Hopeful Parents...

Roots, wings and scary things doctors say.

Click through to Hopeful Parents, and read some other people's stuff as well.

Tuesday, September 4, 2012

Ice, Ice, Piglet...

We are in the middle of a battle of wills with YouTube.

Why are we battling a video sharing website, when it doesn't even know we are battling it?  Ugh. If I knew that, well... we wouldn't be battling. We would be peacefully watching Winnie the Pooh sing Vanilla Ice songs... if he released more than one. I forget now.

Here's the scenario.

Billy has some down time, and cranks up YouTube. He watches videos on repeat. A lot. He has a photographic memory, so the words in those videos are in his brain whether he likes it or not. He is well supervised, so we know what he is watching. He wears headphones so we do not have to listen to things on repeat (which appeals very much to his brain, but not to ours).

Not seeing any issues here?

Look a little deeper.

To do this, it's especially helpful to have an eye into the minds of two groups of people - tweens and teens. The tween (autistic or not) is often ready to push some boundaries, and delighted by farts, poops, explosions and swears. The teen (autistic or not) is mysteriously interested in taking product intended for younger kids and inserting farts, poops, explosions and swears. I can deal with the farts, the poops and even the explosions.

The swears are seriously going to kill me.

Billy loves YouTube. Since he was old enough to point his chubby cheeks at the computer screen, YouTube has been his friend, his escape, his teacher, his mood enhancer, his encyclopaedia and increasingly, a repository for his ideas.

A quick disclaimer, lest you think Billy is gaffer taped to his computer, grey matter rotting and middle expanding.

Billy loves the outdoors. He loves his scooter. He loves the trampoline, swimming and walking the dog (as long as there aren't barky dogs around) but... he is not made for group sports. I could go so far as to say he is not made for sports, generally. He likes watching them, especially the ones that involve crashing, tackling or falling down. He loved the Olympics like it was his own personal sports pageant. He is not a natural participant.

Before the chorus of 'I'm sure there's a sport for him' hits, let me say, slotting him into the sporting world is the least of our concerns. If he was keen, sure, we'd go nuts. If he becomes keen, we're onto it, for sure. As long as he's moving and eating well, we're good with keeping him out of the cute uniforms.

But...I digress.

Back to YouTube.

Like many kids his age, Billy has pretty high level computer skills. He also spells and reads pretty well. He also loves what he loves, and thinks a lot about what he loves. He is a visual learner. He needs downtime, where he's not talking to people, but he's also not sitting in a room by himself.

YouTube was made for him.

It's an endless pit of information and affirmation that being yourself is OK. On YouTube you will find people who think like you and see the world like you. All you have to do is look. And Billy knows how to look.

Match two totally disparate ideas? Bam. There's a thousand videos.
Endless episodes of your favourite show badly videoed while sitting in front of the TV? Easy.
Something you have seen before randomly translated into a variety of languages? Hardly a challenge.

It's all good. Unless it's bad.

We are not slightly worried about real internet danger, at the moment. That stuff is easy to buffer a kid from. Vigilance, safe searches, software if you are really scared or your kid loves things with names heavy in double entendre (do not ever let your child google Britney Spears and Pink at the same time).

It's the Thomas the Tank Engine re-duxes, laden with swears that are our nemesis (nemeses?) right now. The Spongebob revoiced by stoned teenagers. The Simpson's montages with mysterious mother-effers thrown in for some reasons explicable only to their makers. It's also the videos where people scream, endlessly and hopelessly at each other, also for no apparent reason.

It's hard to pick them, because there isn't any kind of mother-effer warning at the beginning of the video. It's hardly an issue for the people who made the video. It's only an issue for the kid with the photographic memory and the emergent penchant for naughty swear words.

When you are Billy, you take in this stuff and you regurgitate it at the worst possible moments, uncontrollably.

When you are Billy's mother, you try very very hard to have that not happen. Especially at Grandma's house, or the doctors or in the middle of a very quiet library.

I know it is out of his control (the regurgitating part). I wish the watching part (once he's been made aware of the ban) was in his control better, but it's not.

It's like a compulsion. Consequences be damned. I'm holding the ipad. I'm typing the letters. I'm watching. Then I'm busted. I'm banned. I'm begging for another chance. Wait 24 hours for ban to be lifted. Rinse. Repeat.

I know when his current stealth swear love passes, he will find another. He is a child, after all. The fact that he is a child with autism makes the transition out of such potentially unpleasant behaviour... decidedly unpleasant. Or elongated, which is quite frankly... unpleasant for all concerned.

No-one wants to be in a constant cycle of behaviour/consequence. No one wants to be in trouble. No one wants to be the mean parent all the time. Also, no-one wants their lovely child yelling 'Get off the effing road, mother-effers!' to people outside the shops.

So, YouTube. Cut us some slack, would you?

Institute a warning system... ask people to add a tag for offensive language. Even if one out of ten people actually do it, then that's one out of ten less surprise swears for us to shield for unsuspecting library patrons. Maybe teenagers will actually love the idea of being labelled as a swear provider.

Or let users block videos within their account. Or send us a virtual nun who will virtually whack our kids on the back of the knuckles when they make a bad choice while we are momentarily indisposed. Seriously, I need to pee. A few times a day.

I don't want to ban you. I like you. We all like you. We need you.

Who else gives us the chance to see Winnie the Pooh singing Vanilla Ice?

Winnie the Poo. Vanilla Ice.

No-one should have to live without that.

Thursday, August 30, 2012

In the name of autism...

In the wake of the publication of an article about autism (with astonishingly beautiful pictures of Billy included) in Australia this week, it has been a real pleasure to see a broad discussion about issues related to the condition bloom. It has also been amazing to hear people's stories about themselves and their own children.

What has been slightly unsettling is to see how comfortable people are with falling into a polarised position, in relation to autism.

I have always felt uncomfortable with polarities, most especially because their yes/no nature denies the fact that new knowledge might exist beyond their limits.

It seems incredibly unproductive to present your position as the 'right' one, and the opposite position as the 'wrong' one, without acknowledging the subtleties of each of those positions (or any of the others that could be involved).

But maybe I'm missing something.

The autism related positions that shock me a little, with their simplicity, go like this.

I am an adult Aspie (or my child is an older Aspie) and I am fine. Therefore, people should stop worrying/pathologising and start accepting that difference is perfectly OK.

Autism is caused by... (insert opinion) and people who think otherwise are wrong and stupid.

Autism is not a disease (I know, because I am autistic or my child is) and people should stop saying it is because it is offensive to me as an autistic person.

And the one that really really concerns me is,

You should just enjoy your son.

I'm sorry. Did I hear that wrong?

I really appreciate people's positive energy, I really do. I am in awe of people's courage in making contact, and I am not trying to make anyone feel bad.

... but I'm wondering how it could possibly be that people who care about understanding where autism comes from and about reducing the incidence in future generations might not enjoy their autistic child. Or am I jumping to the same type of conclusions I am struggling to accept in other people...?

Let me tease this out for a second.

I get that people don't know us, unless of course you do (in which case, hi! how's it going?) but... is it a healthy step to take, people who don't know us, to jump from 'she wants autism numbers to decline' to 'she might not appreciate her own child enough'?

On similar thinking grounds, why do we need to leap from 'it is devastating to be told your child has a lifelong disability' to 'parents of autistic kids think autistic adults are not valuable'.

How in heaven's name could a parent who is in the early stages of understanding, never mind acceptance of a condition that -

a) we have no known cause for
b) we have no agreement on management of
c) we have increasing numbers of, and can't (won't) agree on why

- be thinking that adults who have the condition are somehow downgradable in anyone's estimation?

And again, why are we being encouraged, by people who say they have no medical challenges to deny the medical challenges that are apparent in so very many of our children.

Why is it all or nothing? Why is it 'my way or the highway'? Why is it not... we're all in this together?

Last time I looked, no-one questions the level of enjoyment a parent of a diabetic child gets out of their child. I'm not sure if adult diabetics get on diabetic forums and tell parents of newly diagnosed parents how to feel about their children.

I'm assuming this happens because the level of discourse about an established condition like diabetes is slightly more sophisticated. We know a little more about what causes it, we know some more about how to manage it.  I'm assuming, because I'm not in the diabetes community, but I can see it's easier to talk about than autism is... I wonder why that is?

I hear the chorus of 'autism is not a disease' as I type, and in response I say, 'how do you know?'

I hear people say, 'I'm not sick, I am just different' and in response I say, 'That's brilliant news but my child is often very sick, and so are many of his autistic peers, more and more each day.'

I hear people say, 'you disrespect me with your talk of disease' and in response I say, 'You disrespect my child by denying his reality.'

And that's the point where I feel like I'm back in school having arguments with nuns about whether God exists or not. The polarities are not only pointlessly impossible to prove, they are waaaaaay too far apart.

Why are we not all right? We are all here, acknowledging a connection to the same condition, right?

We all accept autism is a spectrum condition. It is very young, medically. It is changing in front of our eyes. People outside of the condition, or people who have had it for a long time may not be aware of the changes, but they are there.

Of the 100 or so families I would call peers on this journey, well over a third of the autistic kids have serious medical challenges. Not simple challenges. Serious, increasingly life threatening ones - metabolic conditions, mitochondrial disorders, serious mental illness, auto-immune conditions. Every week comes with a new, or worsening diagnosis among these kids. If this is just co-incidence or bad luck, we all need to move our houses off the indigenous burial grounds we must have defaced and buy a couple of black cats each.

None of us were told to expect this. None of us knew it was coming. All of us are, and should be (in my mind) alarmed.

It would take a very, very closed mind to experience what we have experienced in relation to the health of our child and not assume it was linked to the fact that he is also neurologically different. He is one person, one integrated body system, with a recurring set of blatantly medical red flags that bridge his 'difference' and his time in the ER.

Us accepting that has been hard, but that is nothing compared to what Billy has to deal with. Us accepting that does not, and should not lessen the legitimacy of any other life journey on the autism spectrum - similar or different to Billy's.

Does acknowledging (because calling an ambulance repeatedly for your child kind of makes you acknowledge stuff) the seriousness of our kids health conditions make us devalue them as people (autistic or not)? Of course it doesn't. And to be honest, it's pretty offensive to be told it does, or even that it might.

My personal take on our lives is this.

Billy is autistic. Billy has seizures. Billy has an auto-immune condition. Billy has chronic GI conditions. Billy has blue eyes, a photographic memory and gives the best hugs on planet Earth.

None of these things make him an better or any worse than any person on the planet. They, and many other things, make him Billy.

As his parents, it is our job to help him have the best life he can possibly have. This job is only different to other parents' journeys (ie. with children without the conditions he has) in the fact that we spend way more time in the hospital than some people, way less than others.

Beyond that, we love him and challenge him and care for his needs and, most importantly, help him find his path in life. The biggest part of that job is helping him have a very clear sense of who is is - inside and out. He knows he is autistic, he knows he has seizures, he knows he gives good hugs. The list could go on.

Does he think any of those things are bad? No. Not for a second. Are they always fun? No. No, they are not.

Acknowledging the challenges in anything, let alone something like autism, is a healthy process, surely? Giving an autistic child the opportunity to understand that his challenges are not because he is a loser, but because he has a legitimate condition that comes with a range of issues (more than just 'difference') is a responsible path.


I could honestly give two craps whether someone thinks their autism is a gift from God, or a curse from the vaccine industry or an unfortunate by product of a visit from aliens during pregnancy.

The reality is, it is here. None of it should be disrespected. None of it should be judged. None of it should be discounted as something as simple as 'difference'.

How an individual carries themselves through life, in addition to their inborn capacities, is influenced by how they were parented. We take that job very, very seriously.

If I thought I was bringing my son up to believe that there is one belief system, and all others were wrong, I would feel like I was failing dismally.

How we have got to the point where we think it's OK to apply this black and white thinking to a condition like autism, is a mystery to me. The only possible reason I can think of is because we do not know enough about it yet, so people are all clinging to their various lifeboats determined to believe theirs will make it to shore.

Polarities are not only basic level debate strategies, they deny the depth of information that exists (and will exist whether we like it or not) in that vast region that spans the line between black and white.

I'd quite like my son to be healthy. I'd quite like to avoid other children having to have his challenges or the challenges I see in his peers. The difference involved in those challenges is the least of anyone's concerns. The danger involved is the greatest.

So, if a polarity in relation to autism is necessary, here's one.

Difference on the one side. Danger on the other. The stakes are not just way higher, I suspect they are very different to what they used to be.

As much as I don't care for such simplistic arguments, and don't see the sense in trying to unravel a person (least of all my son), I want him to not be in danger. I could care less how different he is.

If doing that makes people think I have somehow compromised my ability to enjoy my child, then that makes me really quite sad. The reality couldn't be further from the truth. Sadly, this very line of thought takes us back to a very unproductive way of viewing and managing disability or difference, in my mind at least.

The discussions we need to be having are so much more complex. I only wish we truly knew how to have them without alienating each other with polarities.

If there was a 'right' position in this game, surely we would have leapt on it.

Then, the world would be happily accepting all the 'difference' and we (and so many others) wouldn't be headed to the hospital again and again and again.

All in the name of autism.

Tuesday, August 28, 2012

The point of a point of view...

It's been an interesting few days.

A Canadian documentary about autism went to air in Australia, and the wave of reaction was something to behold. First, autism parents and families went 'Wow, finally, someone talking about one of the key issues we live with', with a tiny bit of 'Oh great, another thing to feel guilty about' and a few 'Why are people thinking we don't know this already' statements.

Then, the service providers and the non-aligned researchers started in, warning people (who clearly have no ability to interpret the information for themselves) to treat the documentary's message with caution (and I am being kind about their statements).

On the most basic level, I felt a curious mixture of anger and embarrassment. Anger at the pathetic patch-protecting response of the autism industry, and embarrassment that Australia is so far behind international thought on the medical nature of autism.

But that's my point of view, from where I am at the moment in my ride through autism land. It's not where I was when we started, and it's not where I was this time last year. It's not where I will be in five years time.

I think my journey is fairly typical, especially for someone with a child with a range of challenges.

Moreover, what I think is just that... what I think. I don't think it's gospel. I don't think it's irrefutable. I do think it's an honest product of what we have been through as a family.

In response to the interesting-ness of the last couple of days, I feel moved again to think about why I put words on paper about autism. I'm just another mother of a child with the condition. I'm no expert, in anything. So, what the hell am I doing here?

Let's see... I do not write this blog to:
 - present some ideal of what autism parents should do with their time.
 - harange/bully/insult anyone who does things differently to the way I do.
 - promote one intervention/service/initiative over another.
 - inflate my own sense of importance.
 - make money of any kind.

I do this for one reason (apart from to sort my thoughts into neat rows of word-ducks).

In case, one person, one day, in a moment of need might come across what I've written and go... Oh wow, I relate to that. 

It sounds insane, because autism is everywhere, right? It's not like there's a shortage of information out there. But, here's the thing.

Each and every autism parent has to navigate their own way through what really is a minefield of information. One would think, given the depth of the minefield, that it might be like autism Christmas... lots of choice, lots of positivity, lots of surprises.

Well, it's not.

It's more like autism Mad Men. On crack.

Almost every thing you read about autism has an agenda behind it. The agendas vary and they sneak up on you, especially if you are a little tired and emotional.

When you start in this game, it's really, really hard to decode those agendas.
 (well, it was for me, and I'll happily admit I'm not all that quick witted. If you've got this game wired already, just sing a happy song for a few minutes then cut to the bottom of the page. I'll try to throw in a joke for you, by way of a reward).

Here are a few I have found.

Someone is selling you something. 
This can be good and bad.

Some things, you genuinely need to buy, so it's good to have the information (therapist services, books, some food and supplement related products).
Some things you think you'd like to try, but it seems too good to be true or it's gut wrenchingly expensive and so it makes you nervous (computer based products, apps, other supplements and interventions).
Some things are so outrageous your alarms rise straight away but you can't help looking anyway (programs that teach you to 'love your child', snake oil of various kinds).

There is a giant, and growing, pile of cash swirling around autism and it is a giant, and growing shock that people will take advantage of you in pursuit of that cash. It's business, to them, and I'm sure there are very few genuinely evil people out there, but, seriously... buyer beware.

If re-mortgaging your house is required so you can engage in a long term behavioural intervention, and you don't mind re-mortgaging your house... go for it. But, know that NOTHING (repeat NOTHING) comes with a guarantee of success, so you may end up with a giant debt and not what the brochure tells you will happen. If you are happy to take that gamble, then take that gamble.

GFCF is expensive, in time and money. So is going organic. So are supplements. So are shoes, and restaurants and overseas holidays. Do not listen to the sales pitch. Well, do listen, then go and do more research. Then ask some people... Then, read some more, ask your doctor. They'll all say different things and you will feel like vomiting, but you will learn useful stuff. Even so, the outcome is unpredictable.

Therapists, psychologists, consultants will all charge you significant prices for their services. Are these prices justified. Sure, they are, if the therapist is skilled and experienced (which is really hard to work out because, lets face it, they all say they are, and they are all more skilled than we are - unless we are therapists ourselves, so... ). It becomes less and less easy to find the money, and more and more necessary to find it. Not the best position to be in, when one is under pressure to allocate the dwindling cashola.

It's tough, but you have to make the call that feels right to you, and it's bloody hard to know what feels right. More often than not, you listen to the spin, try the thing, drop way more money than you have and then kick yourself and move on. Once in a while, you hit paydirt. Those are good times.

Someone believes something, passionately.
This one takes a super human level of reading between the lines skills, and regularly explodes unsuspecting brains.

Autism is political. Autism is emotional. Autism is divisive. You have to get really good at working out where someone is coming from and reading their passion through that, very legitimate, lens. You need to know about the lens because you will grow one too (or a few if you are lucky) and it will influence who and what you believe (or not) and how quickly you will believe it (or not).

What the hell am I talking about?

Neurodiversity is the easiest to decode, to me. Neurodiversity is term coined by advocates who are autistic to advocate for their right to be autistic. It is a deep, worthy, complex set of beliefs that I will do no justice in one sentence. It has become an advocacy based political movement in the autism community and at various times, prominent members of the neurodiversity movement will make statements on various things relevant to the autism community.

Sometimes, as a parent of an autistic child, who is not autistic yourself, you will be deeply confronted and challenged by what neurodiversity advocates have to say. Other times, you will find yourself applauding their messages and finding great hope in them. Almost always, they will make you question your choices. Sometimes that challenge will disappear quickly, other times you will go out and sell a whole pile of stuff because you realise it's completely wrong for your child.

Similarly, advocates of vaccine safety, biomedical treatment, ABA, mainstreaming, recovery/cure... any number of things, will throw intellectual grenades into your journey through the information. It is really hard to not get scared, angry, threatened, inspired, teary, hopeful and a bunch of other Disney dwarves.

I suggest you become all of those characters, and while you do, try to work out why. Try to decode your reactions, and use that to get yourself a useful framework for action.

Am I angry because it's genuinely offensive, or am I angry because I am feeling guilty for not considering this before? Am I teary because I am exhausted, or am I teary because I've missed an opportunity? The answers will surprise you, I promise. I suggest a including a drink or a chocolate or a very understanding friend in this decoding process, as it's not fun by its very nature. You may as well lighten the load a little.

Then, stand up, put your grown up underpants on and get on with it.

Someone is feeling a strong emotion of some kind.
This is about inertia.

We all do this in our non-autism lives. Well, I do.

Gyms (yoga/pilates classes/bootcamps) are stupid, is my favourite one. I say it all the time, and I have said similar things throughout my life. What I'm saying is, 'I should be exercising in a way that works for me, and I'm not.' Therefore, all the choices I have rejected are stupid.

In reality, they are not stupid. They are perfectly legit choices for other people. I'm not keen right now (though I am getting to love the treadmill running, but that's for another post), but I know I have to do something, so I'll say (or feel, if it's a calm day) my non-preferred choices are stupid. I might even go to lengths to disprove the validity of pilates in conversations, with involved stories about pilates disasters and unfairly acquired pilates injuries. No offense, pilates, I'm just using you to make a point.

I do not know one autism parent who feels like they are doing enough for their child. Not one. This might reflect the calibre of people I know, but I suspect it's more than that. You can never do enough. You can never stay ahead of the game. There is always something else you should be doing, thinking about, planning for, freaking out about... so don't allow that already fraught journey be hoodwinked by other people's emotional reactions to whatever you are considering.

So, my advice would be accept the information, but first process other peoples' emotions in whatever way works for you. They should not be a mitigating factor in your decision making. Do not use your reaction of fear or overwhelmed-ness as a reason to not act. Do not use your reaction of giggly hopefulness as a reason to act.

Take a sanity second. Take a sanity month. Stay engaged, but take a sanity year.

And here's where I want to say something I wish someone had said to me. It is my point of view. It has become the reason I keep on writing.

Hope is a wonderful thing. Progress rocks the kazbah. But if I've experienced and observed one thing on this journey so far, it is this.

It is not getting easier as time goes on. It is getting different. And it's not always an easier different.

I definitely know some families who have managed to minimise the challenge significantly, but they are in the vast, vast, vast minority.

Do everything you can for your child, of course. That's what parents do. But...

Do something (anything, whatever you can do) to prepare yourself for the fact that it might not get easier. Do something so that that reality doesn't stab you in the heart/gut/brain every time you face it.

I'm not saying anything even remotely related to not having hope, or that autism is a pox on anyone's house, or that autistic people are hopeless burdens on all of us.

I am saying, the narrative you are likely to be presented early on in this journey is that you will be relieved of the stress as soon as is humanly possible. The people who are presenting you with the information you seek have likely given you this message. Maybe it will come at EI, at therapy, maybe at school, or when your child becomes an adult. As much as I want this to be true for me, and much much more for my son, it is not what is unfolding. It is not what I am observing around me.

And...  it is what it is. It isn't a choice, and it is our lives. It isn't miserable by any stretch of the imagination, but it's not what the agenda bearing statement makers promised. They were making statements based on their agendas, not on us.

This is NOT a competition about who is more right. It is a significant, important, commitment to happiness. It is life.

You are the only you. Your child is the your child.

I have learned (been taught/been forced to accept) that it is really, really important to look after your own emotional (and physical) journey. Your child needs you to have your ducks in a row. They will need you to have your ducks in a row for a long time, a much longer time than you expected. Even if you choose to replace those ducks with geese, or oranges or bottles of beer.

OK, maybe not the beer. Not every day.

Sunday, August 26, 2012

Enough with the drugs...

Today we head back to Dr Poo, for what must be a six monthly check in. I kind of like that I don't know when the last appointment was.

In the time since we last saw him, we have made pretty significant changes to Billy's gut life, and we have seen pretty significant gains too. It's by no means perfect, but it's better.

I feel like the highschooler with a note from my mother to say I'm allowed to smoke at school, as I head back to the GI, just kind of in reverse.

And here's why.

To Dr Poo and to so many others, we say, 'Thank you, but we don't want to take the drugs.'

I want to put a giant disclaimer here.

I am not, and would not ever ever ever make a comment on or pass judgement on anyone who chooses to medicate their children or themselves. Everyone does the best they can, and more than that, it's their life, their choice and their internal logic that I can never and would never presume to understand.

Having said that... we get a lot of pressure to medicate Billy, from various places and for various things.

The GI would rather Billy took the drugs to keep his bowel moving, and to reduce his acid production so the reflux isn't an issue.

The neurologist would rather he started on anti-convulsants to reduce the number of seizures.

The paediatrician suggests we consider medication for attention/focus/stillness if we want to maximise Billy's school and social success.

We listen, we research, we talk, we observe. In the case of the GI drugs, we gave the drugs a red hot go.

But, so far, the hardcore pharmaceuticals have not proven to be the road for us - in theory or in practice.

We have seen drug reactions that doctors have no response for, but 'wow, I've never seen that before'. We read listed side effects and quake with uncertainty. We do not feel comfortable with the uncertain future that comes with long term untested use of big deal drugs on little growing bodies. We have the space in our lives to made lifestyle changes to accommodate Billy's needs, and the good fortune that he is not showing signs of being a danger to himself or others.

This is not meant to start a debate about whether drugs are good or bad.

Drugs are good. Drugs are bad. And what's a drug anyway? The doctors delight in telling us that supplements are drugs. 'Natural' substances are drugs. Drugs come from plants. I'm sure they are right.

There is no doubt medication is the only answer for many people. Right now, it feels a lot like once we walk through the hardcore medication door, it is very very hard to turn around and walk out again. We want to be genuinely and seriously convinced it's genuinely and seriously necessary before we turn that handle.

Here's some of the thinking I am falling back on (and am certain will evolve and explode many times over on this journey). I've ranked them from easiest to hardest to swallow (in my experience, and in a symbolic tribute to the substances we are considering).

What the hell is in there?
I have learn to not give Billy foods containing (randomly chosen food additive) Butylated Hydroxyanisole (E320, perfectly legal to add to anyone's dinner).

I do this because it's a synthetically manufactured chemical, and I can source enough reading to know it's not doing any good (at the very least) to our bodies. We do not need BHA in our bodies. The food industry needs it because it's doing a great job of stopping fatty foods going rancid on the shelf.

I can at least understand what is in the supplements we choose. I have a teeny tiny bit of knowledge based power. I'm no scientist, so it's not a massive advantage, but it's something. I don't currently have that right when it comes to pharmaceuticals. So I'm more cautious about them.

What the hell is going on?
Billy has odd reactions to drugs. Doctors don't know why. Doctors actually, genuinely demonstrate a lack of care about why. We think and read and ask and research, and if it seems right, we choose to manage the condition over masking it with medicinal bandaids and risking the side effects.

On top of that is the ever growing feeling that 'they' (those who make and sell medicines) are not in this game for our health. I'm not saying safety isn't a priority, I'm saying a bit of collateral damage is not a reason to consider not using the drugs, to the medical fraternity.

Drug safety is based on statistics, not individuals. Billy is an individual. Until someone can give us a clear framework for the drug reactions, we will remain cautious.

Even if he didn't have odd drug reactions, we would be cautious.

What the hell are we expecting here?
Billy is Billy.

Right now, he is happy. Right now, he is on a semi upward trajectory in terms of the challenges he faces. Without wanting to sound like I'm selling front row tickets to my own show, I'd like to think some of that upward movement is because we have made significant changes to our lives to help him.

I'm not even considering the supplements or diet stuff here (though I'm sure they are contributing) but at the most basic levels, we live our lives to reduce his stress levels. We changed our lives so he can learn outside of a school/classroom setting which proved to be immensely stressful to him. We acknowledge his unique stressors and work with, not against them in a very practical sense. We allow him to lead in processes of scheduling and change in our lives. We keep a consistent (and yet growing) team of qualified professionals around both him and us (conflicted as that makes the grown ups in the room some days).

Let's choose a few 'problems' that the drugs are meant to address.

Can he sit still? No. Does it matter? No. Will drugs 'teach' him to sit still? Tough question. Will they make him sit still longer so he can comply with the requests of someone else? Maybe. Could that help him learn to sit still? Jury's out. Is sitting still a giant concern to us? No.

Are we willing to risk having giant adolescent in constant movement? Totally, especially as the potential alternatives seem either not such a big deal (ie. he can sit still) or catastrophic (living with the long term effects of a drug whose long term effects are unknown, even in kids without whacky drug reactions).

Again, the fact that others are willing to take these risks is a tribute to them, and all I can say right now is 'thank you', because somewhere along the line, you are helping all of us know what the effects of these drugs will be.

Can Billy control his bowels effectively? No.
But he is way better at it than he was before. His pathology/serology backs this up 100%.

Is he seizure free? No.
But are the seizures doing him damage? Not according to his neurologist. So...

Can he function better as a Billy?

Yes. No doubt in the world. Do we measure function on social compliance or similarity to peers or academic results? No. No, we do not.

Will we pay a giant price for choosing this path? Who knows.

All we know right now, is it seems like a better choice than drug induced bilious vomiting, uncontrollable diarrhoea, cognitive loss, stillness, compliance... oh wait.... we've gone from safety into some other, less formed territory.

It's the conceptual quicksand of difference, really. What are we wanting from our kids? If they can't naturally be like everyone else, should we force the issue? Is it our right, and is it the desired outcome anyway?

(I always get a touch of the early Carrie Bradshaws when I write something like that... then I realise what I'm writing about and whack myself across the knuckles like the nuns used to... it feels like an odd kind of balancing act)

Back on deck...

I do not envy anyone in this game. No-one's choices are easy. Ours have not been, even though (to us) they seem like the natural choices.

If Billy has an infection that we're clear he can't fight himself, we take the drugs carefully. If his diet is lacking in something he needs, we take the supplement carefully. If there's a challenge to him achieving something, we change our lifestyle to make it possible.

We know it's not this easy for everyone, and for that we are grateful. We know it probably won't remain this easy for Billy's whole life, and because of that, we remain massively cautious.

These strategies definitely don't make the challenges magically disappear, as much as we sometimes wish they would. But they do teach us more about what those challenges mean, and they do give us space to consider our next step.They allow us to live this journey a more examined, aware, considered manner.

Oddly, in an unexpected turn, this whole process has made us happier too. It's made us healthier too. It has shown us that sickness, otherness, difference from the pack is not a bad thing. It's just a thing. Some days it's a really, really good thing.

I wonder if Dr Poo will give a crap?

Tuesday, August 21, 2012

Dear Dr Scientist...

I have a question.

It's a fairly specific question, and I'd quite like a specific answer. The only problem is that I have a feeling the answer to my question is just going to be more questions.

It would be great if that didn't mean we quickly rush to a 'oh well, there's nothing we can do' position too quickly (or at all, if possible).

Here's the question.

Why are we not spending time and money trying to ascertain who the medically vulnerable folk are in our population?

My logic (honed by 44 years of thinking, reading and writing... OK, most of it has involved less hefty content than you are used to, Dr Scientist, but bear with me) says, medical action based on statistical success is awesome, as long as you don't fall into the nether regions of those statistics.

Birth control success at 99.9%, feels great each month when you use your birth control and you are not pregnant. The consequences when you are the .01%... fairly large.

Penicillin allergy risk sits at about 10%.  That's great for the 90%, and heartening that it's the overwhelming majority. It sucks quite substantial balls for the 10%, especially for the 1% of that 10% who may well die from their reaction. It has massive consequences especially for the babies who find out the hard way penicillin is not for them.

A 'very rare' vaccine reaction is listed by the CDC (Australian figures are much harder to source, Google wise... sue me, I'm a kids TV writer) at anywhere between 1 in 100 000 or 1 in 1 000 000... quite a broad range that changes vaccine to vaccine. Also, given that the US has a population of close to 315 million, that's a hell of a lot of people living with 'rare' consequences.

The World Health Organization says it's not possible to predict who will have a mild or serious reaction to a vaccine, and my question, Dear Dr Scientist, is... why not?

We can grow a human ear on the back of a rat. We can land a rover on Mars in real time. We made a sheep without the need for two sheep, soft lighting and a Barry White CD... why can't we work out who is vulnerable?

The cynic in me (or is it the realist) says it's all about money.

It's cheaper to deal with the aftermath than to investigate avoiding the risk. This is especially true if we do not acknowledge a lifelong disability with higher numbers than relatively common conditions (like diabetes or cancer) as a possible consequence of taking on the risk.

The peacekeeper in me wants to believe that governments give more of a crap than that.

Surely, public health, especially the health of children and adolescents comes ahead of financial gain. Surely, a growing and expensive crisis in education and social services is something a government would want to avoid.

The parent in me just wants to protect my child. The human being in me wants to protect other children as well.

And yes, I know that vaccines, penicillin and birth control are protecting children too. Personally, I think they are fab, and should be there along with lots of other procedures that make life better.

But, they need to be safe.

How do we make them safe?

I'm not a scientist, but I'd suggest keeping manufacturers accountable, separating 'testing' out of the mandate of the manufacturer and into the aegis of an independent body, and increasing transparency about how and why ingredients of all broadly administered medications (or whatever the correct word is) are chosen and approved.

Moreover, I'd say, if you want people to continue to use medications with confidence, find out who is at risk and encourage them to make different choices.

The 99% (or 75% or the 10% or whatever) who can go ahead with confidence, then should go ahead with confidence.

The rest can make a different choice.

We should have the right to make a different and accurately informed choice. Billy needs the right to make a different choice. We are not the only ones who need this right.

Just because we are not the majority, doesn't make our safety any less valid.

I remember, as a kid, reading somewhere that you have more chance of being kicked to death by a donkey than being killed in a plane crash. And yet, every year, hundreds of people would lose their lives in spectacular plane crashes.

Interestingly, in a valid quest to ensure people felt more confident about flying, we improved aviation safety. I'm guessing that improvement took a lot of time and money. I'll bet it also hurt someone's hip pocket, but at the same time, it felt like responsible progress.

It wasn't anywhere near the majority of travelers who lost their lives in crashes, but it was some. Death or injury as a possible consequence of air travel probably influenced people to make other choices about travel methods. Especially when the news kept flashing up pictures of flaming fuselages.

I wonder what's stopping us shining a similar light on safety in the medical industry?

I also wonder what all those angry donkeys are doing nowadays...

He really is useful...

There has been one true constant in our adventures in autism world.

The poo issues? Well, they only started after Billy had Transverse Myelitis when he was almost 4. Picky eating? Really only kicked in around 3. Anxiety? Seriously, not an issue before the reflux got bad.

Our consistent companion - Thomas the Tank Engine.

Billy is a hardcore Thomas fan.

I can clearly recall the first contact. We flicked onto an episode of Thomas on the ABC one morning when he was about 15 months old. It was Thomas and the Jet Engine. Billy stopped what he was doing, grabbed the remote from my hand and placed it out of my reach. He stood, transfixed for four and a half minutes.

We had a paediatrician's appointment that day, and afterwards we went to a toy shop. Tiny, toddling Billy wandered through the toy shop and again, stopped in his tracks. A giant tank engine shaped display called him over. He literally knelt before the temple of the tank engine. In a Thomas trance, he chose his first engine - Percy the small green engine.

And so began an enduring love affair.

Billy hearts Thomas, in all its forms. He loves the narrators, from Ringo Starr and George Carlin, through the questionable flirtations with Alec Baldwin and Pierce Brosnan, to the Michaels - Brandon & Angelis. He adores the TV show, even since they betrayed the autistic developmental paradigm by making the faces move. He covets the feature length movies, he consumes the books, he has every kind of train (the ertl, the wooden, the die-cast, the plastic, the wind up, the Subway limited issue, the Hornby and the Bachmann).

It hasn't been an easy relationship.

There were moments when the love of the trains tormented him. In toy shops, where other kids played on his beloved tables and he was too frightened to join in. In dark moments, when he clung to a page of train stickers like there was nothing else in the world, including us. In therapy, when his love was objectified into a motivator or a reinforcer... without a doubt the most exquisite torture a toddler could endure.

I have hidden and given away more Thomas products than I care to recall, at times when we feared his love of trains was taking over everything. But this never, ever felt like the right thing to do... despite all the professionals telling us it was.

And here's why.

Thomas taught Billy everything. He learned colours (for a long time, anything red was 'James'... James cars, James pants, James pencils). He learned directions (forwards, backwards, forwards, backwards... repeat endlessly while lying on the floor with a train in front of your eyes). He learned numbers (we all got this message clearly and quickly, as a misnumbered Thomas train is one of the easiest ways to spot a piss poor pirate non-licensed product). Thomas helped him to talk, to count, to read. Thomas took him further than any of us frantically caring adults could manage on our own.

Most of all, though, Thomas ensured Billy learned about positivity, gentleness, friendship, helpfulness - usefulness.

While I lamented the English class structure overtones in the engines' deferential relationship with the Fat Controller, Billy saw nothing but positive. He can't even see bad in Diesel, or Diesel 10. He reads their motivations better than I can read my workmates' thoughts.

While we feel like we've seen the same thing over and over, Billy finds depth. He can spot repeated shots, he finds characters lurking in backgrounds, he memorises scripts and songs as though they are Shakespeare.

While I wonder when it will end, Billy finds new ways to love. He's uncovered simulators and online games and nasty re-voiced YouTube clips full of swears (hilarious to Billy), explosions (what kid doesn't like a good explosion) and terrorist plots (yes, really).

More importantly, Thomas keeps him company. Thomas is his safe zone. Thomas is his friend. Thomas is his expertise.

Billy has other loves, especially as he veers perilously close to tween-age (he will be nine in November).

David Attenborough and all animals associated with him (read, all animals), zoos, Spongebob, Phineas and Ferb, Regular Show and Adventure Time... all approved Billy fun. He is morphing, reassuringly, into peer mandated, sophisticated popular cultural product consumption.

But a day does not go by, still, where Thomas and Friends do not make an appearance.

It's more sophisticated interaction now. He has a real tangible ability to make films. So, he re-stages Thomas episodes with his own toys. He films and re-cuts episodes, re-voicing the adventures and tightening the shots. He re-cuts trailers and songs. He makes animations. He writes detailed original episodes... I guess that's Thomas fan fiction.

His sensitive and clever teachers integrate his attachment to Thomas into challenging academic moments. His doctors are understanding that Thomas will help him through difficult procedures. We know anything in the universe is easier with an engine attached.

Even though he's almost nine and they are meant for much younger kids, the residents of Sodor still make Billy feel like the world is spinning on its axis.

Oftentimes, I wonder what the future will hold.

Will teenage Billy be charmed by the offer of a Thomas stamp on the back of his hand? Will he go on a first date with a train in his pocket? Will he attend university lectures listening to The Whistle Song on his iPod (or iBrain, or whatever Apple will have invented by then)?

You know what?

It's not really relevant.

As long as he is happy, who cares how he is happy?

We don't know what the future will hold. We can only speculate on what he has the capacity to achieve. We have no idea what to expect.

Autism has completely robbed us of that ability. Autism and its buddies, chronic illness, have scrambled that path for us, as parents. We don't know where we are headed. The road we thought we were going to walk with our child has changed. It's morphed into something else.

Maybe, it's a train track.

At least, if it is, we all know we are chuffing along among trusted friends.