Valerie Foley

Archive for February, 2013|Monthly archive page

Something I wish someone had written in 2001

In Action, Parent issues on February 24, 2013 at 10:08 am

Something I wish someone had written in 2001

Before I got pregnant in 2003, I thought I had read all the things I should read.

I had a good set of medicals, including a gut wrenching breast cancer scare that almost made me halt all baby plans, and then disappeared in the space of a phone call. I cleaned up my diet (so I thought), I stopped anything resembling fun (smoking, drinking, drugs) well before the games truly began. Seriously, I thought I was a mother-to-be out of a funky HBO series.

I didn’t stop my mother-in-law from kindly decorating the nursery with new carpet, paint and treated wood furniture. I didn’t stop cleaning my house with hospital grade bleach (it had the word ‘hospital’ in it for Christ’s sake). I didn’t stop using my microwave, wrapping and heating food in plastic, eating crap loads of fish because we lived on the coast and people go there to eat the big fish the doctors tell you to eat.

Anyway, if you are reading this and you are thinking about autism for reasons either perverse or frighteningly real… here’s my advice.

Stop hiding behind not wanting to be blamed and take responsibility for the mothers-to-be that you once were. Read the above link, if you haven’t already, and then send it to anyone you know that might be thinking about having a baby.

The worst that can happen is they think you are crazy. Blame me, if you want.

We live in different times. We know stuff, or at the very least we suspect stuff, so even though that stuff is uncomfortable and inconvenient and unconfirmed… we should at least listen to it.

If I had read this over a decade or so ago, I would have done things very, very differently. Especially if I was a time travelling superhero who could have had known what we know now, then.

Confused?

Read it. You won’t be anymore.

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.

What a child should eat…

In Action, Diet, Parent issues on February 19, 2013 at 10:26 pm

Just a quick follow up to yesterday’s eating post.

The ‘healthy eating’ guidelines issued by the Australian Government included daily eating plans for various sections of the community. The one for children Billy’s age is here.

Just because it riles me so much (knowing what ‘healthy’ eating can do to a vulnerable child’s body) I broke down the suggestions by ingredient.

The things that bother me are high levels of processed food and processed ingredients within that processed food, poor quality ingredients, preservatives, colours, high salt and sugar content, added vitamins and minerals (the bioavailability question), the reliance on gluten and dairy, the lack of fresh fruit and vegetables, the encouragement for low fat and processed ‘dairy’ products… I am sure I could go on.

On so many levels, WTF?

Even on the most basic PR level, these guidelines came out with news stories featuring faceless children shoving burgers into their mouths. How are they planning to combat obesity by encouraging children to look for nutrition in a packet or a box or a colourful tube?

Anyway… here’s the list. If the source makes you go ‘wha?’ it’s because manufacturers have websites full of spin and short on detail.

The plan again, for reference.

Weetbix: Wholegrain wheat (97%), raw sugar, salt, barley malt extract, minerals (zinc gluconate, iron), vitamins (niacin, thiamin, riboflvin, folate) (www.sanitarium.com.au)

Reduced fat milk: milk, vitamins, minerals, vegetable oil, fish oil, permeate. (www.dairyaustralia.com.au)

Crumpet: Wheat Flour, Water, Raising Agents (500, 450), Iodised Salt, Dextrose, Preservatives (282, 234), Vitamins (Thiamin, Folate). (www.tiptop-foodservices.com.au)

Margarine: natural plant and seed oils, vitamins A & D, colour and flavours (eg. diacetyl), additives (emulsifiers and preservatives 475, 476), milk, salt, water (www.spreadthefacts.com.au)

Ryvita: Wholegrain Wheat Flour (97%), Wheat Flour, Sugar, Skimmed Milk Powder, Rapeseed Oil, Salt, Sugar Beet Fibre. (www.ryvita.co.uk)

Tinned fruit salad: fruit, sucrose, invert sugar syrup, dextrose, dried glucose syrup, glucose syrup, fructose and fructose syrup. (www.codexalimentarius.org)

Kids yoghurt: low fat milk, milk solids, sugar, water, fruit (min. 5.5%), cream, rice starch, halal gelatine, natural flavours, preservative (potassium sorbate), colour (carotene), live yoghurt cultures (s. thermophilus, l.bulgaricus & b.lactis) (www.yoplait.com.au)

Wholemeal bread: Wholegrain Wholemeal Wheat Flour (50%), Water, Wheat Flour, Baker’s Yeast, Vinegar, Wheat Gluten, Iodised Salt, Canola Oil, Emulsifiers (481, 472e, 471), Soy Flour, Vitamins (Thiamin, Folate). (www.tiptop.com.au)

Reduced fat cheese: Pasteurised Milk, Salt, Cultures, Enzyme (Rennet) (www.bega.net.au)

Peanut butter: Peanuts (85%), sugar, soybean oil (antioxidant 330), maltodextrin (from corn), emulsifier (471), salt, molasses (www.foodnut.com.au)

Again, I say… WTF?

Call me a zealot, call me whatever you want. Just don’t call me or my family for any of these meals.

Ugh.

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.

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.

 

This says everything I want to say, but better.

In Action on February 11, 2013 at 10:41 pm

https://www.youtube.com/watch?v=3yL4BQbu48o

Natalie Palumbo is a brilliant young woman, who has a brother with autism.

She’s not willing to stand by and watch while autism is ignored, either.

Purely selfishly, the notion that women like Natalie are going to be fighting after I can’t, is very comforting.

Please watch the video. It was a school project. I am so impressed, I’m actually jealous.

Thank you, Natalie. If my son had a sibling, I’d want that sibling to be you.

How’s it working for you…?

In Action, Perceptions on February 11, 2013 at 10:35 am

I keep writing and re-writing this post in an attempt to make sense.

I’m thinking about how to change the world and make real change and fix stuff and protect other kids and families from some of the stuff we have to endure. I’m thinking about pluralism and inclusivity and agitation and policy change… and I keep disappearing around corners and up my own bottom.

So, instead, I’ll keep it short and sweet.

Here’s a list of what I think is holding back the realisation of actual, tangible useful change in the way autism is viewed, treated and understood.

In random order.

– ridiculous passive memes.

– hideous whiny stories about how no-one really gets it.

– the views of the few being touted as the universal truth.

– actively avoiding the acknowledgement of the presence of elephants in the room.

– pathetic mainstream attempts to divide and conquer with diversionary arguments about hot button issues.

– parents confusing acceptance with inertia.

– professionals pushing nonsense barrows to keep themselves in business.

– politicians answering actual thought out questions with irrelevant cut & pasted press releases.

– people who do not research but pretend they have, who are not informed but claim they are.

– people who buy the ‘movement’ and wouldn’t recognise the reality if it crept up and gave them a wedgie.

If I have to accept that I live in a time where real people seriously think that it’s OK to more than double the rate of a lifelong disabling condition in less than a decade, and not care about why or how… then I’ll stop writing sweet little lists and start running for office.

Or running down the street playing paintball with unsuspecting strangers.

One or the other.

In lieu of absolutely nothing…

In Action on February 4, 2013 at 11:31 am

It saddens me beyond almost anything that autism could easily become an un-solveable issue.

For some in the autism community, the resounding response to that statement would be, hooray. It’s not an issue that needs solving, it’s just something that needs accepting. Open your minds and move on.

For many others, it’s a huge issue and it’s getting huger.

Every day, in my life, there are a series of discussion about school and health and hospitals and doctors and teachers and therapy and medication and side effects and… and… and…

Rest assured, for every study that says (or actually doesn’t say but that was a post last week) kids grow out of autism, there’s scores of children NOT growing out of it, and many many more growing into it.

And we are not doing a damned thing about changing it.

Sure there are parents doing a brilliant job – supporting their kids, fighting for change, provoking thought in a brilliant way. Sure there are professionals doing the best they can with limited resources. Sure, there are autistic folk living the best lives they can some achieving incredible things publicly, some moving mountains that other people don’t even see as they get through their day.

But…

Where are the governments? Where are the policy makers? Where are the industry leaders?

Who is asking why and what and then signing off on following up their answer?

Who is acknowledging that we are not doing enough and committing to do better?

Who is actually actively listening?

Autism is not a choice. It’s not something that anyone assumes. It’s something that is. There’s no flexibility around that. We can’t just stop dealing with it, no matter how much we accept it.

As people who live lives with this disability, we don’t have the choice to disengage financially, practically or emotionally. Whether as a carer or as a person with autism, life IS about the issues. We cannot (and will not) stop dealing with the issues because we can’t. We have to maintain health, try to learn, to get around our cities, try to provide for the future… to live.

So, when pressure comes either from within the factions of the autism community (‘stop talking about autism as a disease, I don’t have a disease‘ or ‘autism is just a natural variant of normal and not something that needs fixing‘) or from outside (‘stop asking why and just accept that it is‘, or ‘you are just angry and want to blame someone‘, or ‘there’s no evidence of what you claim, end of story‘) I sigh… because it changes nothing.

Worse, that pressure is designed to change nothing.

And most families I know, living with autism would say, if we change nothing, we are in a very grave situation indeed.

In Australia right now, we have children being denied medical supplies, being under-educated, being under diagnosed and under serviced. We have people in varying stages of crisis, with no safety net. And there’s lots of them. More and more every day.

Yet, people try to say autism not a problem, that it’s an inflated construct.

Look around you. Go to a school. Talk to a doctor or a nurse. Open your eyes at a zoo or a theme park. Autism is a huge, present, obvious, increasing issue.

If the present is challenging, imagine what the future is going to be like.

The more we normalize this game, the less we support it, financially and politically. It may solve the storm in a tea cup now, but in 40 years time, when my ‘just-slightly-left-of-centre-calm-down-mum’ child has a fatal seizure because his autism means he can’t manage his own epilepsy medication, and there’s zero social service provision for him because autism is NOT an issue… we’ll have a whole new storm on our hands. Or will we…? Do we even care enough?

It seems to me, trudging forward wearing puzzle pieces and lighting things up blue is a colourful diversion from the reality. Sure, some days we need diversions. Why not?

But most days, we need so so so much more.

One in 62.5 school aged children in Australia. From one in 150 not very long ago.

It’s not getting any easier.

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?