Valerie Foley

Archive for January, 2013|Monthly archive page

Autism/Epilepsy therapeutic links

In Medical, Research on January 30, 2013 at 1:26 am

Autism/Epilepsy therapeutic links

If the unexpected improvements we have seen since Billy had to be medicated for epilepsy are anything to go by, this is very interesting research.

That was also a very long sentence.

More info from the author of the study.

Don’t use Movicol/Osmolax/Miralax

In Medical on January 28, 2013 at 12:31 am

Don’t use Movicol/Osmolax/Miralax

Just don’t.

Heal the issue, don’t mask it with long term doses of high level toxins.

This article should be a giant wake up call. It’s full of links, so you can test the logic for yourself.

Inflammation, and eventually autism

In Medical, Research on January 26, 2013 at 4:03 am

Inflammation, and eventually autism

Please, if you can, suppress the impulse to go ‘Oh great, they are blaming the mothers again’ and think about the things that are being said here.

For me, the take home message is:

There is a link between immune activity and autism.

Also, this sentence stuck out for me: Finland also maintains diagnoses of virtually all childhood autism cases from national registries of both hospital admissions and outpatient treatment.

Why the hell don’t all countries do this?

Here’s a link to the original study, if you have access to such things.

We Will All Pay For This

In Action, Medical on January 26, 2013 at 1:14 am

We Will All Pay For This

This is important to read.

No one opened our eyes to the possibility of a future as full of medical crisis as it is. No-one told us it would happen in various guises to many many of our friends.

It’s important to open your eyes. Having them wedged open with toothpicks is nowhere near as natural.

Australian radio talks autism…

In Perceptions on January 25, 2013 at 11:36 pm

Australian radio talks autism…

It’s always interesting to see the perspectives that emerge when there’s no event to promote.

Using your profile for change

In Action, Parent issues on January 22, 2013 at 12:50 am

I have a lot of respect for Jacqueline Laurita right now.

No-one prepared her (or any of us) for the journey she’s on. I think the way she’s handling herself and the opportunity she’s been presented with is laudable. What she does and how she does it is her choice as a parent. However, the fact that she has seized the airspace she has at her disposal to share her journey and potentially ease the way for others, is impressive in my opinion.

For a ‘Real Housewife’, I think she’s got a lot of class.

Add that to the list of sentences I never thought I’d write.

I totally understand people just living their lives and doing their thing. It has never seemed enough for me. Small scale, or bigger Bravo TV scale, speaking up is important to me.

The fact that people will disagree with what you have to say is merely a reminder that we’re all human. The manner in which they will disagree is a reminder that we’re not all the same kind of human. And that in itself isn’t such a bad thing.

What’s the issue with dairy?

In Diet on January 20, 2013 at 9:34 am

Exactly what is the problem with dairy and autism?

Is it the casein?

Is it the BCM7 protein fragment?

Is it the permeate? Or the lactose?

Is it all of them or none of them?

We know that dairy completely slows Billy’s gut function. He was completely CF for five years, and in the last year we have been able to re-introduce hard cheese as long as he has dietary enzymes first. He still can’t tolerate milk, ice cream, yoghurt or anything that includes them as ingredients.

Every day I read something new – a new theory, a new recommendation, a new piece of advice. They are always full of certainty.

Which is truly awesome.

Not.

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.

Air Pollution is bad? Really?

In Environment on January 19, 2013 at 2:04 am

Air Pollution is bad? Really?

Some light reading.

Growing out of autism

In Research on January 17, 2013 at 9:22 am

Growing out of autism

The rug doesn’t match the curtains.

The study and the headline are so very very different.

FWIW, of the 100 or so families in The Autism Experience, the overwhelming majority of kids who have grown up to be successfully mainstreamed (and I mean without 1:1 support) and anything close to being ‘un’-diagnosed are the biomed kids.

It took me a long time to accept it, but it’s without a shadow of a doubt true.

Our journey has taken a very different route, but it is what it is. The wellness narrative is far more potent for us than the recovery one, now.

Here’s the actual study.