Valerie Foley

Archive for the ‘Uncategorized’ Category

Leap off the hook, if you dare…

In Action, Environment, Medical, Parent issues, Research, Uncategorized on June 11, 2013 at 12:02 pm

Today, I unfriended someone I barely know on Facebook. I’m not a massive un-friender, as I’m of the opinion that virtual relationships are not the ones I should get too stressed about.

But today, I drew a line, and I think it’s a healthy one.

The un-friending came because the friend in question posted something about vaccination. It was an article about how if only a family had vaccinated their child, the child would have been alive. It’s a big call, not one that has any possible basis in provable fact, but more to the point, it made me think.

Here’s what it made me think.

I don’t care to engage with people who have not been dragged screaming into autism world about the issues pertinent to autism. I don’t think it is relevant or even interesting. Whether it is about vaccination or diet or environmental toxins or social policy… I’m out. Talk amongst yourselves.

I would like to speak about those things with doctors and researchers and policy makers and public officials. I don’t care what the general populous do, think or care about. And I mean that with great love.

The crisis we face, within the autism community (a screaming need for rigor, research and respect) is huge. It will hit the mainstream soon enough, when the costs drastically escalate and I’m sure they will care about it then. For now though, generalised awareness means nothing to me.

And here’s why.

Whenever there is an obvious crisis, such as the devastating tragedy involving Alex Spourdalakis, the general public (and many of the particularly shiftless within the autism community) leap gleefully on the opportunity to distance themselves from the crisis. People make disgusting statements on social media and on the websites of media outlets condemning people they don’t know, claiming all sorts of stuff they ‘knew all along’.

From a safe turret of moral high ground, people and their lack of anything resembling real-life understanding crow self-righteously, shoring up their own correctness. They use tragedy to reinforce their own life choices.

So a baby dying of whooping cough, is a reason to pat themselves on the back for vaccinating their own child (and thankfully avoiding the tragedy of an adverse event).

A child being denied medical care is a reason to believe medical care is not required by their child (happily pushing responsibility for their child’s condition onto their own child’s temperament/genetics/luck).

A alternate thinking medical professional being shouted down by the system is a reason to believe the system is doing the right thing (conveniently forgetting the ever growing reason that medical professional is speaking out in the first place).

I can’t imagine living in a world where I was looking for reasons to not take action. I can’t imagine caring about opening my mouth to shout ‘the system is perfect, we should question nothing and suspect those who suggest such a thing!’

Well, not unless I had a vested interest in not acknowledging or fixing anything…

The reality, for many of us in autism world, is that our children are one of many facing an uncertain tomorrow, never mind an uncertain future.

Most average people, as much as I want them to (at the very least) empathise with our family’s plight are too busy washing rugby outfits, stressing about their dogs and working out how to pay their mortgages. They don’t have the space in their minds to consider preventative autism policy, phenol reduction vs GAPS or why teachers forget everything they claim to know about the spectrum when their day gets busy.

And I think that’s completely OK.

If I didn’t have to police every foodstuff that enters my son’s personal space, I bloody wouldn’t. I dream of dropping him off at school and doing… something indulgent like working in the company of adults. I’m hopeful there will be a day (and a night) where every twitch, pause or drool isn’t the beginning of a seizure.

So, here’s my gift to the general public, and anyone else who wants it.

You are off the hook. I genuinely don’t care what you think about what I think. I have no judgement of what you do and I bear only the teeniest grudge (hey, I’m nothing if not honest) that your child wasn’t whacked with the random shatter-your-life stick mine was.

It’s OK.

If you don’t want to be autism aware, don’t be. If you don’t want to dig deeper into the key autism issues, don’t. You have other things to think about. Think about them. Do what is important to you. Turn off the blue lightbulbs and chuck out the stupid puzzle pieces, they are useless anyway. Live your lives, do your jobs, be nice to everyone, including the autistic among us.

And now that you are in the clear, let me train my beady eyes elsewhere.

Doctors, heads up. I am coming. And I’m not happy.
You need to lift your game, autism wise. No more denials. No more writing off the concerns of your patients. No more pressuring people to do things that are counter-intuitive. You need to listen, nod politely and action at least one thing that we ask of you. Instead of saying, ‘there’s no evidence of that’, admit that evidence had eluded you or is agin your philosophy or has yet to be established. Instead of insisting current practice is safe, do me a solid, look my child in the eye and admit we could do better.

Researchers, no hiding behind the snack table… I’d like a word.
Who’s driving your decision making? Because if it’s you, what’s stopping you from wondering why autism rates are accelerating at a frightening pace. If you are one who currently thinks it’s overdiagnosis, or the rise of the super doctor, please go to a school and pick a random teacher, preferably one who has been teaching for 10+ years. Ask them what they think about the number of kids with high support needs in the mainstream. Then come back and convince whoever drives your decision making that you should start asking some questions. I’m not going to waste finger strokes going through my question suggestions, because many of us have done it many times before. Besides, you need to engage properly with the issues, rather than spend yet another year proving the unproveable (you know the game… without A, B would not be possible). Please stop talking to the ones you know, and front up to the ones who need your help.

Finally, politicians. We really need to talk.
I know right now in this country, you are busy starting and stomping on bushfires in preparation for the election. But once your burns heal, 2% of your children have some needs you are ignoring right now. Right now they involve education, therapies and medical care. In the blink of a parliamentary eye, they will also be needing housing, lifelong welfare and intensive medical assistance. None of these things are cheap now, and currently the adults in these kids’ lives are handling the cost (we’re the ones that inexplicably carry higher levels of personal debt than you would like and yet lack spectacular electrical goods or sports vehicles). However, those adults won’t be around forever. That’s where you come in. Because as much as you are currently being sold a happy line about interventions wiping the autism (and its pesky additional needs) out of 50% of the diagnosed cohort, the reality is something much more closely resembling… the complete screaming opposite. Listen to the people, not the people who are profiting from the people. They may promise to put a rose coloured wall between you and the costly reality of autism, but they have not, they can not and they will not.

In an ideal world, we’d all care about everything that needed care. In the real world, we just don’t. We care about what has an effect on our lives, and from that care, in some, comes action.

I don’t care who wins rugby matches of any level, at any time, in any place. I love and celebrate the fact that other people take that pressure off me.

I don’t care about any dog beyond my own. Again, I am trilled that other people take on the world’s canine dramas, and I adore them for their passion.

I don’t care who vaccinates and who doesn’t.

I care about changing the system so we know who is vulnerable to the effects my son and many others suffered, so we can minimise those catastrophes.

I care about cleaning up the environment for a bunch of reasons, not the least of which is to avoid making more kids vulnerable to ‘mysterious’ developmental disorders.

I care about fixing our food supply, revising our approach to medication, being rational about the limitations of our current education and health systems.

I care that the people whose job it is to make the world as safe as possible stop denying that autism is a massive issue and start making it less so – by being brave, asking questions and following through.

And I do care a little about the feelings of the un-friended person. I don’t want her to feel bad. I want her to feel free to speak her truth to those who want or need to hear it.

Her  lack of Facebook regard for the issues in my Facebook life is as OK as my lack of Facebook regard for whatever Facebook issues are crucial to her.  When we are both off Facebook, away from the realm of likes and links, we can change the world, much more effectively.

I will miss the pictures of bowtie wearing kittens, of course, but some sacrifices must be made for the greater good.

Total self promotion

In Uncategorized on February 15, 2013 at 10:52 am

In case you are here because you were a fan of Jump on the Rollercoaster…

I have turned the old blog into a book – hardcover and ebook (also PDF for those that way inclined).

If you want a copy, leave me a message in the comments. I’ll send it to you for cost (around $10).

If you are an autism parent and you wonder what turns a run of the mill parent into a stark raving autism advocate… you need to read Jump on the Rollercoaster. I am shocked at how clearly it chronicles my journey from ‘hooray for autism’ to ‘roll up your sleeves, people, we have some serious work to do’.

You can go here and read it for nothing,  but if you want to own it, deface it, dance around it… leave me a comment and I’ll be in touch.

 

Welcome…

In Uncategorized on December 30, 2012 at 2:57 am

I have a son with autism. His name is Billy. He is nine years old, smack bang in the middle of the autism epidemic.

Yes, I believe it’s an epidemic (if that ruffles your feathers, I will not be offended if you want to click somewhere else).

Billy has multiple additional diagnoses alongside autistic disorder –  Epilepsy, GI disease, Anxiety and Transverse Myelitis (an auto-immune condition). It goes without saying (but I’m his mother so I can say it), he is the best kid I know. I’m not here to sing his praises, though (as much as I do in my life), nor am I here to sing my own. I’m doing this to try to make change in a world that needs it, about an issue that’s important to me.

We live in Australia, where try as I might, I can’t find any public figure who has stood up and asked the tough questions about autism. Well, not the questions I want answered.

This site is a clearinghouse for the kind of information I wish I’d had access to when I started out. Hell, it’s the kind of information I need now. I’d go so far as to say, it’s the kind of information we all need to be chewing over if we are going to get any kind of consensus about what autism spectrum disorders are, and what we should be doing about them.

Here are some reasons why you might (or might not) want to explore this site.

While I fight every single day for acceptance and awareness of autism and autistic people, that fight is no longer my primary concern. I am glad others are doing it, but I think there is an urgent need to acknowledge and then move past simplistic messages about autism being a charming variant of normal. It is for some, and absolutely not for others.

In our lives, and in the lives of many people we know, autism is a medical emergency. It started with a speech delay and a few sensory issues, and now lives waaaaay too much of its time in the hospital.

Autism is a behavioural diagnosis, not a medical one, yet our son’s medical needs are often glossed over with phrases that have really started grating on my nerves.

I don’t believe, for example, that he’s ‘unlucky’ (as some of his doctors say). He has not been ‘struck by lightening a few times’ (as some of his doctors say). His additional diagnoses may well be found among a percentage of people with an autism diagnoses, but they are not ‘just autism, Mum’ (as some of his doctors say).

However, I don’t have any answers about what is actually going on. I just have a lot of questions.

So, I read a lot. I talk to a lot of doctors (they’re in our lives a lot, so it seems logical to quiz them a little). I talk to a lot of other autism parents. I make connections where it seems logical, and I keep on looking if the logic seems spongy.

I think people in positions of medical power should be doing more of what I am doing, because there is nothing more scary than carrying your sick child into an Emergency Room and being met with blank stares. I write Kid’s TV for a living and all I’ve got in my arsenal is catchy songs and the odd poo joke.

So, if I’ve scared you away, so be it. If you are still here, click around a bit and see what you find.

There will be articles and studies. There will be petitions you can sign or graffiti if you wish. There will be stuff you can watch, listen to and buy. There will be the odd story from our lives. If you wish, there will be stories from your lives too, but we’ll get to that later.

If you want to know more about me, follow these links:

– The Autism Experience (book): http://www.janecurrypublishing.com.au/The-Autism-Experience.htm
– Through My Eyes (song):
http://www.youtube.com/watch?v=0HwDXoHnVxY (Thanh Bui)
http://www.youtube.com/watch?v=UGCrzmJfwcE (Scott James)

– Jump on the Rollercoaster (where this all started): http://jumpontherollercoaster.blogspot.com.au/

– Change.org (kind of explains itself): https://www.change.org/en-AU/petitions/pm-julia-gillard-health-minister-tanya-plibersek-discuss-the-medical-nature-of-autism-in-a-public-forum

If you want to know more about diet, supplements,poo, medical innovation, research, therapy, poo, auto-immunity, epilepsy, political change, social change, poo… the autism we live with, stick around.

I think we have a lot to learn from each other.

 

DISCLAIMER:
If you are already deep in autism world, you will know one thing for sure… it’s not a place where people agree very often. To that end, I will not be engaging in arguments on this site. Not one. If you are enraged by something I have posted, re-post it somewhere else with lots of colourful language about what an irresponsible/stupid/conned by hippies/conspiracy theorist I am, and argue with your friends. I don’t want to know. I’m not  interested in engaging in pointless online barneys with people I don’t know about information we have just encountered. I think it’s a waste of time and emotional energy. I will moderate comments and delete what I don’t want to publish. I’ll be fair, I promise, but my decision making criterion will be ‘is this helpful?’.

The point here is to disseminate information – information about autism.

Some of it will become gospel. Some of it will become humour. Most of it will swim about somewhere in between. I don’t believe anyone has a license on correct or incorrect. Information is dynamic. In areas like autism, where the doctors look you straight in the face and say ‘We don’t really know…’ all the time, I believe we have an obligation to keep our eyes/ears/hearts/minds (we all learn differently, right?) open.

If you think the world needs changing, tell a politician or an academic or someone who can change it much more effectively than we can arguing in a comments section of a blog. If you agree with the way I’m going about things, join me in my actions.

If not, have a great day.

Actually, we should all aim for a great day.