Valerie Foley

Archive for the ‘Supplements’ Category

Bite me, April 2.

In Action, Diet, Environment, Medical, Parent issues, Perceptions, Research, Supplements, Therapy on March 31, 2014 at 5:47 am

**I apologise in advance for some of the articles I have linked to in this post. In covering the dross that April brings to autism world, some toe dipping in the grotesque waters of ‘Keep Calm and Suck It Up’ is required. It is heretofore referred to as ‘glurge‘ and will be expunged from meaningfulness in due course. I’ve tried to balance with some more useful stuff as well**

It’s that time of year again. You’d think after 10 years of this game, I’d be used to it. And yet, it just gets more frustrating.

New numbers (higher again, how about that?), science vs anecdote dogma (always a joy), everything is au-some, light it up blue, awareness is everything, blah blah blah…

I used to be able to float through this stuff and find the bits I needed. Now, it’s genuinely, literally and completely making me sick. My heart is pounding, my thyroid is busted, despite a great diet and a total life revision I am chronically deficient in things I shouldn’t be deficient in. It’s crazy.

Why is it crazy?

It’s crazy because I, and many many parents like me, want nothing more than to prevent the preventable in children. We want to do this because we have seen our own healthy children regress, or we’ve seen our own children fail to develop as expected, and we don’t think other kids should have to go through this if there is any chance it can be prevented. We can all see it can be treated, to varying degrees of improved outcome, so it’s a no brainer that we should try prevent it as well.

But, say that in the wrong place and you are a bee’s dick away from Hitler. Say the ‘v’ word and eyes glaze over as people picture you as some pubic-hair-plaiting-stoner-breathairian (not that there’s anything wrong with that). Mention your own story and you are ‘ignoring the obvious science.’ Best of all, if you happen to mention anything negative about ‘autism’ in the wrong place, an autistic adult will be cruelly used as a ‘how could you question my existence’ smoke screen.

It’s all bullshit. Every last wasted ounce of energy. Clouds and clouds of nonsense that cover the fact that we have a giant, wide and deep bottomed problem on our hands and we do not know what to do about it. So instead, we will pretend it’s all OK.

Well… it’s not OK. Not with me. And I no longer care to spend time listening to people who think it’s OK. If one more mealy mouthed parent/doctor/’academic’ tells me that it’s better not to use words like disability because Billy ‘might’ not want to think of himself that way, I will start hurling Thomas trains at them. And I have access to quite a few of them.

Billy doesn’t get that choice. We made it for him.

Who ‘we’ actually are, is up for contextual discussion.

We could be his parents by choosing sub-optimal nutrition and medical intervention for ourselves and then him; or our parents for same; or his doctors for not carefully enough including the ramifications of implementing standard operating procedure again and again and again; or the autism industry that promises big, charges for more and delivers almost nothing while shrugging its shoulders and saying ‘Oh well, that’s autism’; or maybe parts of the education system that betrayed him and so many more in their covert square edge smoothing operation;¬† or most reprehensible of all with blue day approaching, the part of the autism community that has decided it’s more important to viciously undo those to think differently about autism than to allow people to access help in whatever form they choose.

Billy doesn’t get to pretend he is not autistic through assiduous use of behavioural therapy and medication. Billy does not get to celebrate his difference in a protected social environment full of computers, lego and pizza loving peers. Billy is too busy hauling basic human function together. If your child is not, you are fortunate NOT more correct in your choice of terminology than me. And yes, I am being charitable.

We, as his parents have every right in the world to be angry about what has happened to our son. More to the point, we have every right to advocate for change to the systems that contributed to what has happened. See a couple of paragraphs above if you are wondering what systems I am referring to.

For each of the ten years Billy’s life has been compromised by this nonsense, I have a question that is yet to be answered by the administrators of glurge.

1. What is ‘autism’?
(like what biological function causes human kids to exhibit the same triad of impairments, that we conveniently aren’t allowed to call a disability. Why are we pretending that words like inflammation, encephalopathy, seizure, motochondrial, immune dysregulation, allergy and intolerance are less preferable than picky eating, tantrum, zoned out, stimming, lazy, unfocused and hyperactive?)

2. Where are the 2% of adults with autism?
(because if it’s better diagnosis making the numbers rise then the undiagnosed hordes are somewhere, functioning sub-optimally without intervention, early or otherwise that is essential according to the powers that be. If 2% of the population were somehow able handle school without support, though most current ASD school kids find that quite challenging, which magic pixies made their adult lives suddenly tolerable?)

3. Why can’t we talk about vaccines?
(If vaccine package inserts say autism is a possible long term outcome of use, how come we accept the statement that ‘science’ says vaccines don’t cause autism? In related matters, what perverse logic says every human will react the same to any introduced substance? Has science ever been in a room full of drunk people?)

4. Why do we use ‘science’ as a weapon to shut down discussion?
(When there are countless peer reviewed studies linking vaccines and autism, why are we pretending there isn’t? OK, there are 84 here, that’s not countless, but it’s not zero either. If they aren’t convincing, search the Australian Government’s database of Adverse Event Notification. Or watch this. It is as black and white as a rainbow, anyway, between statistics as science, anecdote vs science and my personal favourite the rejection of validity because the system is screwed anyway. Clearly, science has some issues)

5. Why are people so determined to normalise what is deeply deeply atypical?
(forget, for one second the tendency to go ‘normal, what a toxic word’, and instead focus on the experience of realising your child is not achieving milestones and is instead regressing and increasingly physically sick. If autism involved 2 % of the population developing a disfiguring rash, you can bet your life we’d be addressing causation as a matter of urgency)

6. Why do we hide behind arguments about semantics?
If disability is such a dirty word, why does the CDC refer to a speech and language impairment (the thing so many parents cling to like desperate autism avoiding limpets) as a disability? So, all that ‘my kid isn’t disabled’ means exactly what to the systems that oversee the wellness of the world? While we are on ‘d’ words, why is a ‘disorder’ preferable to a ‘disease’? Why are we ‘dicking about’ pretending that arguing the values of words is more important than focusing on the actual condition we are discussing?

7. Why are we so afraid of common illness?
(let’s not sink into a pointless discussion of whether you would rather your child be disabled by autism or disease, and focus on the question of why it’s so not OK to be sick anymore. What’s wrong with a few days off school or work with the flu, well, except that the world has to adapt to the fact that you are away and that costs money, and also you lose money because no-one’s got a salaried job for life anymore… ah, OK. I see… carry on…)

8. Why have we accepted ‘there is no known cause’?
(How could any developmental condition, especially one that’s growing in impact daily, including ‘autism’ NOT be related to nutrition, the environment or the physical health of anyone involved? Seriously? After all these years? Why are we letting paediatricians say ‘we have no idea’?)

9. Why is autism intervention not related to physical health?
(How could it possibly be that improving the health of an autistic child through nutrition and lifestyle modification isn’t helpful? What deep Catholic denial was I in when I accepted that one? In other questions, why have we not studied more of the legions of children who have gone through biomedical interventions and seen improvements)

10. What are we doing about it?
(Why are we, and I refer specifically to Australia here, doing a grand total of nothing yet at a government level, to understand why more children every day are being diagnosed with ‘autism’ or how their ongoing health might be related?)

*crickets*

I’m done arguing. I’m taking action. Well, as much as my own health and my child’s health will allow.

I’m working with the system – finding alternatives in education, working with doctors with open minds and credible careers, connecting with like minded parents and service providers. We are all moving forward practically and medically, and more importantly, we are leaving the unhelpful nonsense (AKA glurge) behind.

It isn’t OK to hide behind anything. It isn’t OK to take each other down in order to build ourselves up. It is definitely not OK to co-opt people as emotive smokescreens in discussions that matter to the people having them (even if they happen to disagree with you). These things might be natural human reactions but they are also basic political strategies designed to shut down subversive agendas. We do not need to be distracted this easily.

No matter how you stand this condition up, it is an emergency. We are not set up to deal with it now, never mind to approach the future when there are not just kids unable to handle kid life, but an additional very obvious cohort of adolescents and adults unsupported in their existence.

One of them, unless we find something to help him that currently isn’t common knowledge, will be my son.

I will not let that happen. What responsible parent would?

That was another question. Ugh. He’ll be 11 soon. Indulge me.

 

IMG_6839

(Image: Clifford Harper/agraphia.co.uk)

 

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.

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.

It’s April 2

In Action, Diet, Environment, Medical, Parent issues, Perceptions, Research, Supplements, Therapy on April 2, 2013 at 2:15 am

It's April 2

Red for Action.
I’m aware already.

Sometimes things are so stupid they’re barely worth linking to…

In Action, Environment, Medical, Parent issues, Perceptions, Research, Supplements on March 22, 2013 at 10:12 am

On the same day the CDC grudgingly admitted autism numbers in the USA have hit 1 in 50 (1 in 31 boys), another couple of curiosities emerged.

A study, from Harvard University (no less) linking childhood abuse and autism and a woman’s chance of giving birth to a child who would eventually be diagnosed with autism. There were cursory attempts to link the physiological effects of childhood abuse (stress on the immune system, brain chemicals rhubarb, rhubarb) to the creation of a child vulnerable to autism.

Also, a Swedish study linking young grandfathers and autism. I lost the train that logically connected the young grandfathers and autism, while I medicated my son’s seizures and attempted to soothe him from the whole body attack that is a dog barking in the distance. Though I suspect I lost it, because it’s so effing ridiculous that giving it thought would be insulting to my synapses.

It’s hilarious how we are often accused of spurious concept connections as autism parents (oh, the autism/MMR thing is a complete coincidence of timing… oh, he would have learned to control his anger with maturity and not all those whacky diets and supplements etc etc etc) yet ‘science’ can draw the longest bows known to man, and we’re supposed to go, ‘Oh, of course, that makes total sense because someone with Dr in front of their name said it.’

Nothing to see here. Move on. Smile at the doctor or he’ll say you have Somatic Symptom Disorder.

The timing is suspicious. But there’s a bigger suspicion/question/brain conniption.

There is no compulsion currently on anyone to publish research. It’s a big bone of contention in research internationally. So why publish these studies? And why publicise them on the same day as the CDC admissions (oddly impossible to find on the CDC website)?

Can you say, ‘Oh look, an unusual looking butterfly!’?

Many folk way smarter and better connected than me have spoken about the importance of the international community waking up and smelling the autism flavoured coffee.

My rant for today is about why in heavens name we are persisting in ‘studying’ things we cannot control?

I have absolutely no control over the fact that both my grandfathers were well advanced in age by the time I was born. I also have no control over whether I suffered abuse as a child (OK, I know that’s marginally contentious and if you want to see how insanely dinosaur like some members of the Australian media are about issues like this, click here.)

I have control over… um, wow… just about everything else. What I eat, what I wear, what chemicals I use and consume, where I live, how I sleep, what I put in/on/around my body, and let’s not even start on the choices I make about my child. We have control over those things. We all do.

Why are we not studying them?

Where’s the funding for the ‘how about a year without E numbers?’ study?

Who’s the Bill Gates of NOT filling our bodies full of foreign substances?

We are being fed the information that it is important to feed us.

And we are living with the consequences of not questioning it.

Even my cranky old grandfather would have been able to see that.

Before he died.

Old.

I am a nutcase. And…

In Medical, Supplements on February 23, 2013 at 2:30 am

One of the most useful things I have done in the journey through autism world is to compile every single pathology results we’ve had on Billy into one giant Excel document.

Obviously, I have also mastered compiling every word I can think of into one over-long sentence.

Many times, when doctors have said, ‘Yes, but what happens to his (calcium/ammonia/vitamin D/strange collection of letters and numbers) when he’s sick…?’ I’ve been able to go… actually, I can tell you.

This week I found this lovely link, which explains what those results actually mean, in lay person’s terms.

Now, I can be crazy AND slightly more articulate.

Watch out.

Food, eating and insanity

In Diet, Medical, Supplements on February 19, 2013 at 4:47 am

Today, the day after the Australian government released an arcane update to their slightly less arcane dietary guidelines, Billy has eaten quite a few more than twenty individual ingredients.

And the day’s not over yet.

I preface this by saying in his past, Billy has managed to eat only one ingredient in a day, and sometimes that ingredient was potato, maybe deep fried in oil (technically two ingredients, maybe more if you count the added carginigens). I’m not proud, but I am honest.

Insert ridiculous and constant illness, all sorts of associated social and health challenges and an ever growing list of diagnoses, and a rock could have worked out things had to change.

People said, ‘Yeah, autistic kids are picky eaters.’ We all compared our kids hilarious preferences for food of a particular colour or texture. PhDs were done on the autistic love of the chicken nugget.

I knew it was going to be a challenge and I knew (from failing spectacularly a number of times) that while there was an urgent need for change, speed was not going to be my friend on this journey (and I mean the hasty kind, not the illegal kind).

It’s been anywhere between one and two years (depending on which whack in the face with a wet fish I take as the actual beginning of this journey) of GI investigation, diet change, supplementation, lifestyle revision and research obsession and… we have reached a landmark, of sorts.

Today, for breakfast Billy had a smoothie made out of home made almond milk (almonds, pure water, medjool dates, vanilla), bananas, raspberries, spinach and ice. He ate some extra fruit as well. That’s 7 separate ingredients (if I was counting…)

Then we made muffins with the almond pulp (which I won’t count again) with carrot, sultanas, coconut, eggs, coconut oil and coconut flour. That’s 6 more. We’re up to 13 (though words are my thing and I’m very excited, so forgive me if the numbers are wrong). He ate a muffin.

Then, he requested leftover GF pizza. Mushrooms, olives, hard cheese (taken with enzymes), tomato, Superfoods for Kidz Vital Veggie Power on Quirky Cooking’s GF base. I’m stopping counting ingredients because these last two have bazillions of goodies in them. I’m confidently going to say he’s had maybe 30 different foods today.

It’s only the afternoon, so there’s probably a snack and dinner to go.

Now, when you ask him, ‘Would you like to try….(any food that’s not nuggets)?’ He says, ‘Sure.’ And he actually does try them. Last week, he asked for a fruit salad (I know…, seriously?) and he ate it. It had rockmelon, paw paw, blackberries, blueberries, banana, apple and grapes in it.

I know. It’s me talking. It’s my child I am writing about.

This is how bad it used to be.

We travel a lot. It was impossible for us, up until this year, to travel anywhere out of striking distance of a McDonalds. I’m not exaggerating. If we couldn’t cook for ourselves, McDonald’s chips were it. Seriously. Again, I’m not proud.

And here’s how excellent it has become. Yesterday, he asked if we had any chocolate. I looked. All the packaged stuff in the pantry was out of date (woo hoo!!), and he went, ‘OK, can I have an apple?’

If we can do this, anyone can do this.

Vitamin D again

In Research, Supplements on February 3, 2013 at 5:33 am

Vitamin D again

What’s interesting, to me, about the coverage of this study of the link between ASD and Vitamin D is that it comes from Saudi Arabia. Even with sun screen and clothing coverage, there’s access to environmental Vitamin D a-plenty, if you take the recommended daily levels into consideration.

The idea that a lack of sun exposure is the issue is questionable. It’s the same here in Australia (or anywhere that doesn’t have significant stretches of the year where being out in the sun is a challenge).

In our personal experience, we are learning there seems to be an issue with synthesizing Vitamin D. No matter how much we supplement, sunbathe or add D rich foods, the levels don’t rise. More than that, oral supplementation causes significant GI disruption.

The naturopath says that’s because Billy is not metabolising fats, because his liver needs support, and D is a fat soluble vitamin. So, we take a step backwards try and support his liver function better (so at some point we can take a couple of steps forward again).

The question is… why?

Eating the elephant

In Diet, Medical, Supplements on January 19, 2013 at 11:28 am

Eating the elephant

Another good page – info and links.

Biomed is like eating an elephant.

Except the elephant is made of pills, oils and powders.

We tried it when Billy was two and got spooked by spooky doctors (who have subsequently lost their licenses), and saw little progress and hemorrhaged cash for too long. Then a homeopath provoked Billy’s immune system so hard it collapsed.

So we gave it up, thinking it was all a bunch of dangerous hooey.

But it’s not. I promise it’s not. Not all of it.

No more than eating, drinking and sleeping well is a bunch of hooey. It seems like the fun police but it’s not. It’s a roadway to better functioning. Sometimes things work, sometimes they don’t. But that’s like anything in wellness. We’re all different.

Do it carefully, do it safely, do it with your eyes and heart (and wallet) open. Don’t do anything that feels wrong, but if something does feel wrong, do yourself the favour of working out why.

Most importantly, my personal advice would be do not do this alone.

It’s an elephant, and it’s big and once you take one bite, it changes shapes and then it’s hard to know where else to bite.

Find a medical/wellness professional who knows autism and talk to them, without your child first. If you don’t like them, move on and find one you do trust. The internet is not a medical professional. It’s a great support, but it is not reliable enough to guide you completely. It’s just not.

Here’s search engine to find a practitioner in Australia and NZ. I’m sure these people would point you in the right direction if you are in other countries.

The reason I think this is important is because autism is not a medical diagnosis. It is a behavioural one. If the behaviour you experience/see/deal with is troubling or self injurious or dangerous, then it seems nuts to me if you don’t try to do something to ameliorate it.

Also, there’s a lot of stuff that’s become normalised in autism that should not be, in my view – GI issues, food intolerances, sleep disturbance. In an NT person, you’d be asking for help. In an ASD person, doctors go ‘Oh yeah, lots of autistic people have that.’ – end of story. Actually, not end of story, ‘Take this drug.’ Now, end of story. I’m not buying that for a second. It’s like saying, ‘Lots of people who sit down a lot are overweight. If you have to sit down, take this metabolism booster.’

It just seems logical to ask why. Why does my child struggle to poop? Why does my child bite himself or others? Why has my child developed OCD? Seriously, why is why so unexpected?

Behaviour does not exist in a vacuum – it is learned or it comes from a biological basis. That biological basis can often be an imbalance or a malfunction and it may be able to be addressed biomedically. If it’s learned then there’s behavioural therapy (not that I’m a massive fan, but that’s a whole other post).

Despite the whole, ‘if you’ve met one person with autism’ thing, there are too many similarities across the autism spectrum to not learn from the journeys of others. You don’t have to copy them, just learn from them. I quite like this site, but there are a billion others, catering to your belief set.

Knowledge is accumulating.

I, for one, can’t imagine a reason to ignore that knowledge (whether I agree with it or not).

Obviously, if you are happy as a clam with your child’s or your own health and behaviour and you don’t see the need for any change, then ignore this whole post.

You’ll know by now, that I think my son is a cracker of a human being, but I’d be an idiot if I denied the complexity of his challenges – across the board, with ‘autism’ (as it is defined in the DSM) being the smallest of our concerns.

I can’t imagine ever ever giving up the chance for him to have better health and functioning.

And that is why I eat the elephant.

Apologies to all the elephant lovers out there.

Great Summary of Probiotic Brands

In Supplements on January 6, 2013 at 3:54 am

Great Summary of Probiotic Brands

This list is American, but I’m sad to say, we have had to return to having probiotics sent from the USA.

The locally available high strength probiotics we have had been using with great success, contain strep strains, and Billy has developed significant OCD, so… we’re back on getting them from this brilliant site – Our Kids ASD.

Like everything, it’s not cheap. But unlike everything, this company is reliable as they come, and will ship refrigerated goods to Australia quicker than I can have things delivered from interstate here.