Valerie Foley

Posts Tagged ‘Change’

Unlucky…

In Action, Diet, Environment, Medical, Parent issues, Research, Supplements on September 8, 2013 at 2:33 am

Today, in Australia, we have a new government.

It’s not the one I chose, but it’s the one I’ve got, so I’ve got to work with it… Which is kind of how I feel about the lot my kid has been handed, health wise.

The doctors say he’s unlucky. We believe something different.

Sure, we may have passed on some things that made him vulnerable, but the choices we made (under medical supervision/duress) have not helped. We were uninformed, inexperienced and like so many others, we did as we were told – because we were assured it was right, by people we trusted.

Add that to an increasingly toxic world, poor poor nutrition dressed up as health food, completely unnecessary household protection products pervading every part of us… and maybe it’s easy to understand why we have a chronically ill child.

He’s not unlucky, he’s been forced to play a game where the odds are actively and massively stacked against him.

For the uninitiated, my excellent son Billy is autistic (atypical, verbal, sensory, intellectually delayed and yet defined HF).
He has GI issues (atypical, chronic constipation and reflux, not coeliac by the traditional numbers but completely unable to tolerate gluten as well as dairy/soy/additives).
He had an auto-immune disease called Transverse Myelitis (atypical, sensing a trend here?).
He has seizures (frontal lobe, mostly generalised, tonic clonic and… atypical).

We’ve managed the GI and auto-immune fallout with diet and supplements – GFCFSF, low sugar, no additives, omegas, probiotics, enzymes – the basic stuff. The seizures are almost two years old, and we are still in the process of navigating through the world of anti convulsants.

The first medication of choice – Epilim (depakote) failed to control the seizures so we increased the dose. It packed weight onto his body then just as quickly stripped it off, sedated him, sent his TSH levels skyrocketing and as an added atypical bonus gave him OCD. It was the OCD that convinced the neurologist to change medications, not because he was concerned (lots of autistic kids have OCD), but because we were.

The second (and current) medication, Keppra, isn’t controlling the seizures either and has induced what’s known in the trade as ‘keppra rage‘, or atypical behaviour changes common in autistic kids (if you are a neurologist). His recommendation? Increase the medication, to see if it will control the seizures. We really have to comply, at this stage, as the non-pharma options require failure of at least three medications before the neurologists will mandate their use. And, yes, though every instinct is screaming caution, we trust the neurologists. They are genuinely good, open minded people and they are a critical part of all we’ve got.

Billy’s tonic clonic seizures are infrequent (every couple of months), happen mostly, though not exclusively, when we are away from home and last up to three minutes (which, oddly seems like three long, slow hours). They could be much worse, which is heartening in a truly unexpected way. The doctors say there’s no real way of knowing whether something is causing them, or whether they’ve been there all along waiting to emerge (the ‘unlucky’ theory).

I know I write a lot about wondering why this is happening to my kid, but seriously, the question never gets old.

Mainly because I can’t help thinking that ‘He might just be unlucky’ isn’t much of an answer.

It’s not much for him, who has a long life ahead of him, with much medical challenge and little medical wisdom. It’s not much for us, who are frantically trying to plan for that life in the now, and in the never-never that does not include our presence. It’s not good for the many many people who share his challenges in a country and a world that can do so much better.

So, while the blue light folk are sharing peace, love and awareness (oddly without the mung beans which are GFCF and therefore unsupported by evidence), I’m keen to spread the ‘why?’

We have a new government in this country, which makes this as good a time as any.
We have a fast growing cohort of ‘unlucky’ kids – young people diagnosed with a condition that their parents didn’t have, that limits their life journey in myriad ways, that has no known cause or treatment.
We have to do something, right?

In the lucky country – hell, in any country, it’s not good enough.

So, my plan is to see if we can convince the economic rationalists that addressing autism causation will save them money, that knowing what it is will help us prevent it and the massive costs it manifests in the education/healthcare/social services sectors, that leading the world in interventions that actually reduce those costs would shine a positive light on them and their time in government.

If an election proves nothing else, it proves that luck has nothing to do with anything. It’s about strategy, focusing on the relevant information and pushing and pushing and pushing until you get the change you want.

Our new Prime Minister is definitely aware how that works…

I’ll play his game, if it gets the result for our kids. All I need to do is encourage him to understand how he could stack the odds in their favour.

And learn how to speak conservative without a bad smell look on my face.

I’m not sure which one will be harder.

Emotion, the enemy of nothing…

In Action, Parent issues, Perceptions on April 14, 2013 at 3:32 am

The arsenal of  ‘you crazy autism parents are wrong’ weaponry needs some attention paid to it. If you start picking the labels off it, there’s truly nothing meaningful underneath.

When evidence and science are not being foisted about as reasons why we are all unreliably nuts, we get ’emotion’ thrown at us. I’m talking choice arguments like, ‘your logic is clouded by emotion’, ‘you are inventing irrational theories because of your emotions’, ‘you are just being emotional’… you know, the kinds of statements that make domestic arguments go so very well.

Let’s pull it apart a little.

On a purely human level, any parent who has seen their child struggle with anything, gets the emotions we are talking about here to a greater or lesser degree – frustration, grief, desperation, hope, pride, anger, resolve.

On an intellectual level, these are the emotions that provoke thought, rigor, action.

On a historical level, these are the very things that have made invention, innovation and change happen.

So, I’m just not buying that emotion is a counterproductive part of this journey.

Instead, I’m thinking throwing shade over natural processes of human existence is more of a deliberate tactic to divert the need for change.

We are parents (genuinely emotional job).

Our children are struggling (stimulates the odd emotion).

We want to know why and we’re being denied answers (tends to provoke responses in the right kind of person).

There’s no doubt there are many parents who share a similar journey to mine who do not want answers. Many of them are friends of mine (maybe yours too). They are flat out living. They trust the experts will take care of it. They do not care why their children have autism, they simply care about living the best possible life with it. Some choose to view their autistic children as gifted, some choose to view their autistic children as irritants, some have no view of the autistic part of their children at all. These parents can be vocal about their stance, or not. While I am not one of these parents, it is absolutely not my place to judge their choices. Speculate, privately, maybe a little, but not judge.

My take on the emotions that motivate me in this game?

If I didn’t let them be felt, express them, share them, acknowledge them, recognise them in others… I would be denying reality. Plain and simple.

Our personal story is not one of the most extreme, and yet…

We have watched our child be tortured (literally) by the presence of other children and the noise they make.

We have watched our child become paralysed (literally) in front of our eyes by a provoked auto-immune disease.

We have watched as his body has been poked, prodded, drained, infused, monitored, imaged (literally) as doctors pondered and never fully answered what was/is happening to him.

We have watched as trusted professional people who refused to understand him, mishandled him in a variety of settings. We have watched as those same people, under scrutiny, lied about their actions and their understandings.

We have watched our son, through all of this be a human being who values joy, humour, compassion and love over everything else.

It is not surprising we have some emotion tied up in all of that.

It is surprising that ‘experts’ would use the presence of that emotion to question our credibility.

And we are, again, by no means the most questioned.

I see, again and again, change agents in the autism community torn down by others. It can be other parents doing the tearing, or ‘experts’ doing the tearing. They do it openly, they do it subtly. It doesn’t matter how they do it, to me, though, the fact that they need to do it is the concern to me.

If, as I read this morning on Facebook, autism is not a disability and just a lovely set of accommodate-able quirks, and we should all be happy with that as a standpoint, because our peadiatricians (80% are on the spectrum apparently) agree…

… then, why the need to discredit those who think differently? Especially by using their normal parental emotions as reasons.

If more and more autism is OK with you, why be threatened by those who think it is not?

Forget the numbers (as if you can), forget the future (as though you can) and focus purely on the experience of being a parent and seeing your child unable to cope with normal life. Your child has a condition that makes the simplest things anywhere between troubling and impossible. No one knows why. No-one knows if it will ever go away. You may even suspect your child was once healthy, and they became… not healthy.

The best response strategy is acceptance, right? Put a lid on your emotions and get on with life. Keep Calm and Carry On.

Here’s the thing.

Do nothing, is a deliberate social choice.

Socially, economically (in the short term), politically (in a shortsighted kind of way)… do nothing is also much much cheaper.

When your doctor says, ‘you are clouded by your emotions and your gut instincts about what caused your child’s autism are wrong’ – why do they do that? What is the aim there? In the moment, I’m sure they just want you to feel better. But the social aim about the condition called autism is ‘do nothing.’

When other parents say, ‘it’s OK, doesn’t Bill Gates have an ASD?’, the social message is ‘do nothing’.

When autism service providers say, ‘we can teach your child to cope’, the social strategy on autism is ‘do nothing’.

Where the personal meets the social, I get to this – It’s not just about me and my family, it’s about all of us.

When we normalise the existence of a condition, we are not paying tribute to those who have it, we are condoning the actions of the society that does nothing to stop it.

When we question the credibility of the witnesses to the birth of that condition, we are choosing to condone doing nothing.

If you want to do nothing, do nothing. It’s your life. But do not work against doing something.

Because if you do,  your children and your children’s children’s children’s children will be paying for that choice – emotionally and literally, in the provision of disability services, housing, welfare, education, medical care.

Know that you are saying it’s OK for more and more children to be diagnosed with autism, and if trends maintain, those children will not have the kind of autism that makes them a quirky paediatrician or a sneaker wearing billionaire. They will have the kind that puts them in hospital a lot, on medication a lot, and in the presence of befuddled first responders a lot.

Obviously, that is a choice you are free to make.

I am not OK with that. My baby will not be a medical professional. He is unlikely to be any kind of professional. It is not easy to say that out loud.

I am allowed to be sad. It’s OK for me to be disappointed. There is nothing in the world wrong with my being angry. The problem, for me, would come if I did nothing with those emotions.

In my mind, anything that compromises someone you love is worth doing something about.

I love my own child to the moon and back, which is why I can acknowledge that what needs to change it is way way way bigger than even that.

We need to talk about ‘autism’…

In Action, Parent issues, Perceptions on March 3, 2013 at 2:10 am

April’s a coming…

If we needed any proof at all that autism is a contemporary epidemic, we just need to look at the ever growing divisions between autism parents.

I think I can safely say, very few of us had any of this in mind when we gave birth.

In recent days, I’ve had conversations with other mid-range veterans about the need for a thinking space where people who are past the initial shock, the initial grief, and the initial ‘hooray for autism’ phases can communicate openly with each other.

It’s not that those things aren’t important for people to go through, in whatever sequence makes sense to them. It’s that once you are past them (if you get past them), your tolerance for their passivity and lack of inertia (and general tone, if I’m brutally honest) starts to atrophy.

It may be because you are facing increasing amounts of serious medical crisis (as opposed to accepting that all these pesky ‘symptoms’ are ‘autism’).

It might be because life is all of a sudden getting really real (in contrast to the ‘they might grow out of it’ mentality we are all lulled into… newsflash, btw, they probably won’t and it seriouses-up fast when they don’t).

It may be because in your own temperament, within your person, as a product of your upbringing, in the wake of a lack of hugging, (insert your own reason)… you are simply not a change agent or a fan of change agent type activity.

Doesn’t matter why, to me.

These things just are, and that’s what makes human diversity.

Moreover, in autism there are people who can talk and people who can’t. People who can live independently and people who can’t. People who need regular hospital care and people who don’t. It’s a spectrum disorder.

So the idea that those who need less, actively campaign against those who need more, is not just insane, it’s got a really ugly feel to it.

In other social movements, the stay in the same placers tend to stay in the same place, and the move forwarders tend to move forwards. Makes sense. In autism, the stay in the same placers seem to need to slow down the forward momentum, and I’m buggered if I understand why. Because if you are happy with the status quo, wouldn’t you just um, live it?

We all have different stories that inform our perspectives. It’s hard for all of us.

But some of us aren’t happy with it staying hard, and so we fight for the change we think is necessary. That change is generally the right to chose a more appropriate path, medically and socially, for our kids.

I reached a point where ‘hooray for autism’ was not enough. In fact, it was embarrassing. Actually, it has become something that drives me senselessly around the house looking for sharp objects and something non-living to use them on. But that’s just me.

The point that turned me was my son’s health. It was the frightening co-incidences in diagnoses and conditions among the cohort of autistic kids he has grown with. It was the growing realisation of the medical reality of this condition, despite years of convincing myself otherwise. It was, scariest of all, the startlingly blankly similar reactions in a growing legion of doctors who had no answers for us.

Actually, I lie. They had one answer, ‘It’s just autism.’

I would read stories about really sick kids, from autism parents elsewhere, and I’d think, ‘Wow, that must be awful.’ I’d seen similar patterns of crisis in overseas stories and thought, ‘Gosh, I’m so grateful that’s not what we are dealing with.’ And in the back of my head, I’m thinking, I hope that problem with pooping isn’t more serious than they say… I hope that ‘freak’ auto immune attack that paralysed him wasn’t related to anything else… I hope those staring spells and tremors don’t mean anything.

It was, and it is and they do.

If they (the nagging fears) don’t mean anything bigger for your child (or you don’t have them at all), then I think you are very very fortunate. And I’m very happy for you.

But here’s the important thing.

Your personal experience contributes to the massive growing pool of autism experience. It is not indicative of everyone who shares the experience of autism. The reality of your experience does not negate the integrity or validity of anyone else’s experience.

And yet, by virtue of the diagnosis our children share, we spend a massive amount of time acting as though we share the same experience.

Even more insanely, (and maybe because doing less is generally more attractive than doing more), we use mindless inspirational posters to throw shade over the seriousness of the condition. We place ‘love’ and ‘acceptance’ on one side of the scale and the demand for medical respect for sick children on the other.

So here’s what I’d like to see us talk about in April.

Count your blessings if autism is something to celebrate in your lives.

Then, open your mind to the fact that it shouldn’t be. Stick with this. Listen, even if your guts are churning. You don’t have to change your mind. It’s your mind.

All of us love our children. All of us accept our children. These things are not in question.

Here is what is in question, for me.

Is autism a random act of fate, genetic or otherwise? Or, is it something we all play a role in, like say diabetes, allergies, asthma, cancer? Yup, I went there. Cancer and autism in the same sentence. I question whether our choices, lifestyle, medical advice played a role in causing and exacerbating this condition in our son, and I question whether our societal choices play a role in causing and exacerbating this condition in a generation of kids. I don’t have all the answers, but I gain a lot from the search for them.

Does that make me love and accept my child any less?

I’m actually not going to answer my own stupid question, because it’s so damned ridiculous. What I will happily admit is that I was sucked in mightily by a passive acceptance manifesto for way to long. I promoted the ‘there’s nothing wrong with Billy and everything wrong with the world that judges him’ for a long time. And in that time, my son got sicker and sicker. If you want to follow that journey in painful (and sometimes witty) relief, download it for free here.

But that’s my journey, and everyone’s journey is different.

How is it I can say that, and yet others feel happy telling me my son’s story is (somehow, mysteriously and illogically) a random unfortunate series of events, and I am inventing logical connections because I have Munchausens or some other invented condition and so do all my crazy imaginary friends..?

As April approaches, I am bracing myself for a barrage of nonsense.

I am happy to report that my chosen perspective on autism advocacy is being presented now more than ever before on the information super highway. I am inspired and affirmed by the rigor and passion of the Thinking Mom’s Revolution. I am informed and challenged by Age of Autism. I am calmed and educated by Autism One. If there’s a fence, I choose to stand on their side. Do I agree with everything they say? No. Do I agree with everything anyone says? No. Does it stop me confidently standing on this side? No way.

If you identify on the other side, the ‘I wouldn’t trade my autistic kid for anything’ (whatever that means) side, it’s all good. I know you have a lot on your plate, and it’s not easy, and I’m guessing there’s a lot of comfort and focus in your side (as there is in mine).

Enjoy it.

And then, back off my turf.

It is hard enough to convince the actual doctors we see in our actual days that autism is not a good enough explanation for our son’s medical issues, or that adult doses of medication is not a good enough long term solution. We need change in this realm. If you do not, awesome, it’s no skin off your nose if I fight for it, so leave me to it.

Leave us to it. You have what you need. We are not competing.

It is hard enough to convince teachers and educational administrators that children with autism who are mainstreamed need complex and expensive support in the classroom. There is no other appropriate place for many of these kids, and they have to be in some kind of educational setting because that’s the law. So enjoy the fact that you need less, and support the fight for the kids who need more.

Or, even less confronting, just let the people who have to fight fight, and you do what you do.

The nonsense idea that just because your experience of autism means you see no need for change, then no-one’s experience of autism reflects that need, is just… immature. Politically and socially immature.

There is so much to question, so much to consider, so much to try… so much that can be done.

As much as I’d like to sit back and hum along to Simon & Garfunkel next month, I’ve got work to do.