Valerie Foley

Archive for June, 2013|Monthly archive page

They’d tell me, right?

In Medical, Parent issues on June 28, 2013 at 2:07 pm

We spend a lot of time at the hospital.

Sometimes we’re chronic, and sometimes we’re critical. Today, we were curious.  We spent an hour with a truly charming neuro-immunologist having one of the most depressing conversations I may have ever had.

I was hoping to be wowed by doctor magic. I really need to stop believing in doctor magic.

Billy’s first diagnosis was PDD-NOS, then Transverse Myelitis. Then came the GI issues. Then the full ASD. Then the epilepsy. His energy is depleted. His motor skills are impaired. The world takes a toll on him.

We’ve had a neurologist for the longest time, and today we got to meet the next line of defence – the neuro-immunologist. We wanted to know if we should be standing by for any new diagnoses.We’re starting to feel pretty unlucky.

The doctor listened carefully to everything we had to say, sympathised with the dilemma of the autism parent in the medical system and told us he had no idea why Billy has so many suckful medical conditions.

He said can see there’s something, and he suspects it has something to do with his immune system (and less to do with his mitochondria or his metabolism). He says genetics need a good going over. But he was very clear that we are in the realm of real but currently unquantifiable, medically. At least in this country.

Now, why am I telling this story? Apart from giving my fingers something to do in between the disappointed wine drinking?

Well, it’s a rare day that goes by when another autism parent doesn’t say to me… ‘well, if the doctors were worried about something to do with my child’s health, they’d tell me.’

I’m here to tell you, people, they wouldn’t.

Why? Because they genuinely do not know.

I think some of them genuinely want to know, but the momentum is simply not there to find out more.

We are also seeing, that when individual doctors do learn, they think long and hard about sharing their knowledge, because it is the sort of information that will shake up the public health landscape around the world in a gigantic way. And it’s a rare doctor that is confident about doing that.

The information required is the sort of stuff that makes people need to change their lifestyles, make decisions that make them stick out from the crowd, protect their kids from ‘normal’ life. Normal people. Run of the mill, everyday folk, changing their lives to keep their kids functioning.

But it’s not just the doctors.  There’s also the issue that corporate (governmental) knowledge of autism is lagging years behind the lived experience. This wouldn’t necessarily be a problem, if autism was universally the quirky talks-too-much-about-Star-Wars thing that we are led to believe it is. It wouldn’t be a problem if the bureaucrats didn’t need to believe that autism needed no more than some EI and the odd social skills group.

They not only have to learn what autism really is, they need to be willing to change the entire system to accommodate this new reality. No wonder it’s not happening.

Sitting in the presence of skilled and sensitive doctors who say, ‘I can see what you see, and I don’t know what it is’ is my least favourite parental job. I don’t want to hear that the biggest children’s hospital in the country are flummoxed by my son’s health. I also don’t need to be placated by statements like, ‘But autism wise, he’s pretty good.’

I am not the only person I know in this oddly comfortable leaky boat.

My co-floaters have beautiful teens in profound mental health crisis, tweens with degenerative movement disorders, primary schoolers with mito and pre-schoolers in psych lockdown.

‘Boy, I’m glad that’s not us’, I hear you say, ‘my kid just has autism.’

My kid just had autism too. So did the teen and the tween and the primary schooler and the baby. Autism is no more than a word (and that’s from the mouth of the neuro-immunologist). It’s a name we give to a set of symptoms that are evidence of something not doing what it was built to do. And that something is what we really really need the doctors and bureaucrats to understand – the somethings that have become frighteningly common but are not normal.

And, don’t be afraid of the word ‘normal’ for heavens sake.

Normal to me, previous to this medical adventure, was not fearing for my child’s future. Normal was bringing up my son to achieve his goals and find inner peace.

Now, it’s the fervent wish we won’t wake up in a pool of urine, or don’t have to spend our sleeping hours ensuring our son is safe in the recovery position while seizing uncontrollably. It’s accepting that a good day has to include medication, and supplements and vigilance about food that would put a TV chef to shame.

It would be awesome if the doctors caught up, in all honesty. We could do with the back up. We are just keeping afloat here, and the flares we are sending up are seen but not understood.

We can’t sit back and think it will be OK. We can’t write ourselves out of this narrative. It is what it is.

I’d love to think that autism parents who don’t feel like they live in this leaky boat would find the space to stand up and fight for change. At the very least, I’d hope they wouldn’t fight against us.

Billy is our everything, and he is the most important thing ever, but on days like today, it (not him, it) is the opposite of fun. Literally, diametrically opposed to fun.

On days like today, I realise that love is quite literally the sea keeping this boat bobbing up and down. All the reading, all the studies, all the therapy… dissolves into nothing.

And we go back to scratch. Focus on Billy. On health. On happiness.

So, yeah… Today I learned, that unless you ask, they won’t tell you anything.

And if you do ask, you might come away wanting.

We have a long, long, long way to go.

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.

Wellness, Recovery and the odd black cat…

In Action, Diet, Environment, Medical, Parent issues, Perceptions, Research, Supplements, Therapy on June 1, 2013 at 2:58 am

Today, I watched this video again, because it popped up on my timeline and I hit play, like the trained monkey I am.

I rejected the school of thought in this video when Billy was a toddler.

I rejected it because I was encouraged to believe autism was not an illness, but a condition that I should just accept. So, I did not treat it. I managed it instead.

It is one of my biggest regrets.

When ‘actual’ illness became apparent in Billy (transverse myelitis, GI inflammation and now epilepsy), we jumped straight into treatment. As any human beings would. Illness needs treatment, right?

Put yourselves in our shoes – if you were told to just manage your four year old who was paralyzed from the waist down, mysteriously after a short bout of vomiting, would you go… Oh, OK? If you were told that your seven year old should just manage chronic constipation with no reasonable cause, would you go… Yeah, no worries? If your child was regularly woken from sleep with violent whole body seizures, would you just put a blanket on him and go back to sleep?

No, of course you wouldn’t. Of course we wouldn’t. And thankfully, his doctors wouldn’t either.

While I have massive issues with many of the medical experiences we have had, I want to be really clear about something.

The medical doctors will treat (to the best of their knowledge and ability) Billy’s medical conditions – auto-immune disease, constipation, reflux, epilepsy. A rare one will see, and maybe speak about, the fact that these conditions are occurring in the body of a person diagnosed with autism. They generally speak in terms of ‘coincidence’, a lack of luck or a series of unfortunate lightening strikes, but at least they notice.

We are now seeing (more and more) the emergence of an arm of the medical community that will speak louder and with medical authority about this. I for one am very grateful.

Because it might surprise you to know that, as Billy’s mother, I do not see any of this as co-incidence, I don’t believe in luck and I try as hard as I can to keep him safe from lightening strikes – real or metaphorical.

(As a side note, I’m genuinely shocked that doctors feel OK about using such non-scientific language, when their own first defense against autism parents’ concerns that vaccines/toxins/immunological events might play a role in their child’s wellness is… science. But I digress.)

Last month, at the MINDD International Forum, I was able to interview a few of the doctors who have changed the way I think about my son’s life. Actually, they are the doctors who affirm the parents who changed the way I think about my son’s life. But as this is getting a little bit too ‘lady who swallowed a fly’, I’ll clarify.

I spoke with Dr Martha Herbert, who appears in the video I linked above. I spoke with Dr Elizabeth Mumper, Dr Ron Erlich and Dr Robyn Cosford among many others. I spoke with Julie Matthews, the nutritionist who has forged a rational and evidence based path for so many autism parents. I spoke with incredible parents like Kris Barrett who have revolutionised their own professional practice in response to their own life journey.

The message from all these people was the same:
Making improvements in diet and lifestyle = improved  health
Treating underlying chronic disease = improved health
Improved health = improved functioning

Unsurprisingly, I came away thinking I am intensely fortunate for doing the work I do. More importantly, I really really really really wish I had been less cynical when this ground was being broken when Billy was tiny.

Because here’s the thing.

We are a canary family, in a whole generation of canaries. We are brighter and yellower than many, though by no means the most canary like.

Billy couldn’t be more medically autistic if he tried.

I was convinced when he was little that he was completely atypically autistic (and therefore inelligible for the raging hope that biomed offered) because he was not a behavioural kid. He didn’t tantrum. He didn’t spin. He didn’t rage.  I would look at these stories of kids yelling and biting and kicking at the world, and think, ‘my beautiful toddler is just autistic, he’s not sick. This stuff can’t help Billy.’

In the most perverse statement I will ever make, I will say Billy is fortunate to have become so very obviously unwell.

And before you diagnose me with Munchhausens by proxy, or call child protection, let me explain.

By separating Billy’s medical life from his autistic life, as we had done, we put ourselves in a unique position to see what happens when you treat the underlying medical conditions that manifest in an autism diagnosis.

When we treated his auto-immune illness with massive IV prednisone, his language improved overnight. Overnight.

When we treated his constipation and reflux (with diet, probiotics, enzymes and omega oils) his social skills improved. Noticably.

When we treated his seizures with anti-convulsants, his cognition took a huge leap.

When we changed our lives, we changed his ‘luck’.

I don’t give a crap if you call it recovery, or wellness or life… Billy’s existence is better. He is better.

None of these solutions are perfect, the journey will go on for his whole life, I imagine. But we’re on it. We’re driving it, and it’s making things better.

I spend my days talking to autism parents on various places on this journey. Some hardcore recovery journeyfolk, some dabbling in ‘the diet’, some adamantly opposed to the idea that autism is anything more than a roll of the genetic and behavioural dice.

Each to their own, I say. Despite drastic differences of belief and practice, I don’t know any autism parent who doesn’t think they are doing the best they can for their child.

In fact, I find it beyond ridiculous that parents would choose to use a difference of perception to reinforce the validity of their own path. Take yours and run with it, I reckon. All I ask is that instead of using the differences between your experiences and mine as a reason to reject my reality, I’d encourage you to learn from my experience.

I didn’t think my child was sick. I thought he was unlucky, and somehow we just had to live with that. We had to force him out into the world, with a few swings on an OT’s rope and some flash cards as weapons against a world that made him choose muteness over communication.

The pressure of doing that (or maybe time, inevitability, the manifestation of staring too many black cats in the eyes… whatever) made him really sick. When we treated the sickness effectively, the unlucky stuff improved too.

Billy still qualifies for an autism diagnosis, and I’m not thinking that will ever change. Billy will likely have lifelong support needs. But, Billy is much, much, much better and I have every hope that will continue.

He is no longer unlucky. He is on a path to wellness that can not help but improve his life.

I have no doubt that the path we are on now has genuinely recovered children from the medical conditions that can manifest in an autism diagnosis. I have no doubt that this path doesn’t ‘cure’ others. Just the same as some cancer treatments work for some people and not for others.

This isn’t a framework of magic bullets and miracle cures. It’s about health.

I rejected it because it seemed like the former, but it is actually about the latter.

Billy’s health is doing what health should – it is healing.

For those who take perverse pleasure in bringing down those who are courageous enough to take control of their child’s health, I say, who are you helping?

For those who say it’s dangerous quackery and parents should be warned against it, I say, do you think we are that stupid?

For those who think autism is just fine, I say, enjoy the ride and good luck to your grandchildren.

Eighty years ago, if your child developed acute leukaemia, you were told to try a blood transfusion and prepare your goodbyes. These days advances in medicine and more importantly in our understanding of what leukaemia is, mean the treatment and prognosis is entirely different.

We study, we learn, we change… in relation to all sorts of medical/social conditions, and until we genuinely accept autism as a medical condition, we cannot reasonably expect change.

In the meantime, I have grains to grind and nut milk to make.

And black cats to stare down. Just in case.