Wednesday, February 22, 2012

Why New Years' resolutions are not stupid...

While we were travelling last year, we walked a lot. As you do. The side benefit of the walking, besides seeing California's excellent zoos, waterfalls and supermarket aisles, was that we all got fitter. We lost weight, we ate better, we actually took a few photos that we are not ashamed of sharing with the family.

We got back home with new resolve to improve our lifestyle.

Pesky things like homeschooling, housework and actual work kind of get in the way of exercising, but in the three or four months since we got home, we've all managed to effect a kind of change. The dog is thrilled, as his days now start and end with a walk. The fruit shop around the corner is thrilled, because I'm there every second day to restock. The chip shop a few blocks away begs to differ, buy hey, you can't win them all.

After Christmas, we brought a treadmill into the house. It has become my me-time. Me, the iPad and the treadmill have a thang going on very day. Billy loves it because for 45 minutes I am not hassling him to practice making the number 8 (seriously, why is 8 so hard? We need a new, simpler-to-draw number).

Then, 2001 A Space Odyessy style, the blender that can crush rocks was dragged out of the back of the kitchen cupboard. Not long after that, I bought a juicer.

And here's where the autism comes in.

Like many kids on the spectrum, Billy could be described, charitably, as a picky eater. It only struck us when we were in California, that all his preferred foods are on the white/orange/tan/brown side of the rainbow. Thankfully, these colours allow for a fair few fruits and vegetables, but preclude much meat (beyond chicken, and the odd man out colour wise - bacon).

We know this is not good, and have worked methodically over his eight years to improve his repertoire. We employed behavioural style tactics (look at it, smell it, lick it, bite it, chew it, vomit it up, start again). We tried modelling good behaviour (look, Daddy's only gagging a tiny bit while he eats broccoli). We tried showing him positive behaviour elsewhere (see, that lion on Animal Planet is eating meat). We tried forcing him (no more David Attenborough unless you eat those peas). In more rational moments, we added a variety of supplements to his life to make up for the lack of all sorts of everything in his diet.

Oddly, all along, despite my total lack of faith in the medical fraternity (see our adventures in the rest of this blog for the reasons why), Billy will do what a doctor says. If they say eat more veggies, he will give it a red hot go (he will at least add one mouthful of plant to his daily intake). If they say drugs are necessary, he will take them (I worry how he will react in his teenage/young adult years when 'drugs' and suggestions thereabouts take on a whole new meaning).

This has meant that things delivered in syringes (minus the needles) are to be tolerated.

Are you following my logic?

I read in Jenny McCarthy and Dr Jerry Kartzinel's book that Jenny follows her son around with syringes full of fresh juice, and I figured if it works, it works. Low and behold, Billy is drinking syringes full of vegetables and fruit (of the non-tan variety) every day. Yeah, yeah, I know that he needs to eat them. I know that a juicer loses 30% of the nutrients right off the bat. Quite frankly, I'll take the 70%, because it's better than 0%.

He's taking in a variety of new tastes every day. He's asking what the fruits and vegetables are. He's learning and he's not hurling afterwards. To me, right now, that's a win.

The bonus win is that I am drinking a bunch of fresh juice. I am also making kick-arse smoothies, full of fresh ingredients and nutrient rich nuts and seeds and we are sharing them. I drink mine the traditional way, while Billy prefers the 'its medicine so I'll take it off a spoon' routine. Again, it's unconventional, but I'm going with it. He's autistic, for crap's sake, we do just about nothing the conventional way.

The final added joy, is that fresh juice and smoothies are brilliant places to hide the supplements. I am no longer bargaining for individual spoonfuls of commercial fruit puree with granules of something barely hidden inside. Fresh juice is a strong flavour, the intensity of it really does hide a myriad of nasty.

We are definitely seeing advancements in the GI department too. Billy has missed the odd day of medication and the system is still on track (to use an old lady euphemism). I'm hoping when we phase out the last of the gluten, and phase in the enzymes and liquid magnesium, we might be drug free altogether.

But we have to take this slow. Between the poo/acid issues and the new addition of seizures, the underlying fear that comes from playing mad scientist with my child's body makes me feel like baby steps are key. Apart from the fear of doing actual damage, there's nothing like turning up to your doctor and trying to justify trying out supplements that you really know very little about. I read in every spare hour I have about the relative benefits of one thing or another, but I'm well aware that one person's evidence is another person's marketing campaign.

This drives me nuts, to be honest. I'm not sure about anyone else in autism world, but I haven't got a clue if anything is 'right' anymore.

Are vaccines evil? I see both sides of the argument, and am bored with explaining why I won't give my child any more. Is fish oil important? Some say yes, some say no, but it sure is disgusting. Was my child just dealt a filthy hand in God's poker game? Maybe (but I'm not a fan of God or gambling so where does that leave us?).

I know, I have a child who struggles to get through a day in the world without being overwhelmed. I know the solutions offered to me by the medical and educational systems (for the most part) are a curious combination of 'get over it' and 'just make him, he has to learn it sometime' - neither of which fills any of us with anything resembling confidence.

The alternatives - frantic, eclectic reading/radical lifestyle simplification/restraining oneself from whacking well meaning folk with ones' car keys - aren't making me feel like Oprah on a good day either, but hey... they keep me busy. And regular.

Win-Win, ish.

Friday, February 17, 2012

Tiny kitten wearing a bow tie...

I've got nothing good to say. So I've given this post a cute title in lieu of nothing.

This last week began with Dr Poo 2 who magnanimously informed us that Billy has no reflux and that his bowel issues are 'all in his head'. There's no evidence of GI disease, no reason why an 8 year old would be unable to control his bowels, no way to find out any more.

He felt Billy's tummy. He looked at Dr Poo 1's endoscopy results.

He said keep going as we have been. Take the osmotic laxatives. Stop thinking he has reflux. Nothing to see here. There are lots of kids who can't hold poo in, or let it out on a regular basis. Chill out, Mum. He'll get it when he's ready.


Then we booked an EEG to investigate Billy's seizures, or whatever they are. He has thankfully not had any big shaking seizures since that first one. He has had at least one absence event every day since we started on this game. Some days, they come in waves, like they are chasing him. Some days, you can see them coming. Some days you can't. Some times he twitches, some times he is dead still. Some times he has a bunch of repetitive hand actions, sometimes he doesn't. There's a set of physical behaviours that are common to all these events - a loss of coordination, an increase in sweating, a set of odd swallow mouth movements. They interrupt his play, they interrupt his learning, they break our hearts.

We've videoed as many as we can, but seriously, it's hideous watching your child disappear into some alternate universe, so sometimes we can't make ourselves document what's doing on. We just write down the details and move on.

Billy calls these events 'the funny feeling', and he can tell us when they are coming now. It helps, because having lived with a deeply sensory autistic boy for so long, it's sometimes hard to know whether he's taking some processing time or having a seizure.

I'm reluctant to call them seizures, really, because he hasn't seen a neurologist yet. It's like a spooky stranger has come to live with us. Like Billy has a creepy imaginary friend.

I'm thinking this will all become less odd, very quickly, and I'll stop using offensive words like 'creepy' in reference to my child. Either that or they will disappear altogether. I'm hoping we find out more from the EEG, but a big part of me wants the EEG to find nothing. Actually, I want this crap to stop happening to my boy.

If that's OK.

I'm sick of being grateful that Billy can talk. I'm over being happy that he's reading and hating maths as much as at least half his NT peers. I'm not getting any solace from the idea that 'lots of kids' have poo issues, or sensory problems or seizures. I'm not comforted by the idea that he has been 'struck by lightning'... just bad luck, when it comes to the transverse myelitis or the drug reactions.

I want to get a t-shirt made for me or him or anyone who will wear it that says, 'this is one child, not a representative sample.' Maybe with 'you idiots' on the back.

I'm figuring they wouldn't see the offensive bit until we are walking out the door. I'm used to keeping my back to the wall in those places.

But... I've been writing this whiny crap for the way too long.

He's fine. We're fine. The dog had a bit of a limp early in the week, but he seems fine too.

There are autistic kids everywhere struggling with the day to day. There are parents fighting the good fight with varying degrees of success everyday. There are lightning bolts whizzing about whacking families on the back of the head all the time.

That's all I've got. We're all deep in it. We're all doing the best we can.

Well, that and a very cute tiny kitten wearing a bow tie.

There you go.

That's as close to rock bottom as I want to go.

Monday, February 6, 2012

At Hopeful Parents...

Wondering if I've been selected as a contestant on a reality show.

Click through for a read... if you have a strong stomach.