Tuesday, March 6, 2012

I'm haunted by sprinkles...

I’m embarrassed by myself.

Generally speaking, I’m a big fan of the effect adversity has on writing. It’s not hard to come up with funny jokes when you are consumed by rage of various sizes.

Lately, though, I feel like there’s a tone to what I write. You know the feeling. When your neck starts to cramp up from the inside as your child (friend, neighbour, local politician) starts to whine. It’s like being gaffer-taped to a wall while highly tuned racing cars zoom past.

So, despite Billy’s health issues and the (slowly reducing) desire to stick expired seafood on the undersides of certain people’s vehicles… I’m going to quit my whining and reveal my genuine embarrassment (and the growth that has come from it) instead.

Last week, we returned to Dr Poo 1. I didn’t let him know I had been unfaithful (by visiting Dr Poo 2), though I am sure there’s an equivalent of the oestrogen telegraph among gastroenterologists. I don’t want to think too hard about that.

Dr Poo 1 says Billy’s reflux is chronic (odd, the other guy says it doesn’t exist) and we should try more drugs. He says I know you hate the laxatives but please still use them sometimes. He says good on you for going organic and fresh and adding all those supplements (but please confer with your biomed doctor a lot). He says beware of the fibre loss from going GF (despite the fact that he knows well that Billy does not eat bread/pasta/cereal by choice anyway… or he would if he read his file).

Dr Poo 1 also says the addition of seizures in Billy’s life means we have to start the process of investigating metabolic and/or mitochondrial disorders.

I’m oddly cold, in the face of this suggestion. We will, of course, investigate and deal with whatever we find or don’t find. It’s a long road. It is what it is. I’m not embarrassed by this trip to Dr Poo 1. Thankfully.

The embarrassment comes from the ease with which we have been able to make some serious inroads into changing Billy’s (and our) diet.

I love the change. I hate the sneaking suspicion that we may have been able to do this sooner, and it may have had an effect earlier.

Quick backstory – when Billy was under 2 years old, we went to a well known biomed doctor here in Sydney. He creeped me out so badly with his scary giant Anthony Robbins sized hands and his pronouncement that yet-to-be-diagnosed Billy was indeed ‘profoundly autistic’, that I ran a mile from his office, and from anything biomed related.

I’m not proud. Actually, I’m embarrassed.

Armed with an indignant air, I continued to ignore good advice for way too long. Being me, I asked for information a lot. I just stored it neatly in the same place in the back of my head that my own needed lifestyle changes languished… with cocktails… on sunloungers.

Billy became chronically constipated. Billy developed Transverse Myelitis. Billy was constantly sick. Billy developed seizures. What was I waiting for?

It’s not like I was sitting on my hands. I was trying. I was cutting out this, and trying that… but we were also in deep denial.

There was a lot of sugar. A lot of chips (French fries). A lot of good stuff missing. It felt like it was waaaay too hard to make quantum change.

Many kids on the spectrum, Billy included, are picky eaters, sensory eaters, self limiters… the labels go on and on. It is scary. You think they are going to fade away. You think the delicate balance of functioning and behaviour that you do have is going to be upset if you insist on change. You think the day is too damn hard to make it even harder by taking the sprinkle covered cookies away.

We are about eight weeks into the change, now. It’s slow (literally one sniff at a time), but it’s working. Oh, how it’s working.

I am not going crazy here (now there’s a sentence)… I have just vastly increased fruit/vegetables buy building on the stuff he would eat. Bananas (always overripe) have become smoothies packed with other fruits, seeds, nuts, good fats. Carrots have morphed into juice, muffins, puree loaded with supplements and good oils. You get the idea.

He is asked to tolerate the new food just sitting on the table next to him. Then he has to smell it. Then lick it. Then take a mouse bite. Then a monster bite.

That’s it. Not rocket science.

Yes, he is resistant. Yes, he gags occasionally. Yes, I am bribing him with massive reinforcers and consequences. Yes, he keeps on going.

Tiny steps. Tiny steps that get bigger the next day, and even bigger the next.

In eight weeks, we have increased his food repertoire 100 fold. In tiny tiny bites.

I’m not doing this to prove anything to anyone (least of all him). I am doing this to improve his health and physical functioning. As fearsome a foe as autism can be some days, ill health is a waaaay bigger one.

It is possible.

I am embarrassed at how possible it is.

Actually, I’m lying a bit. I am doing this in part to prove something to others. Here’s why.

You go to the doctor with your autistic child who is… stressed, constipated, sick… you name it. They ask, ‘how’s his diet?’ You say… ‘Hmmm, well, he is autistic’. They go, ‘huh…? Does he have a multi-vitamin?’ And you go, ‘Hmmm, well, he is autistic.’

It is very hard to remain credible when you are not really trying. It is very easy to be embarrassed.

Autism makes a lot of stuff feel impossible. It can’t make good health impossible. Actually, it does, on a cellular level for lots of us, so that should make us even more determined to get diet and supplements right. Right?

I’m not saying we were terrible 100% of the time. I don’t believe any parent thinks that a steady diet of crap is a good thing. But I do know we fell into long periods of not great dietary habits. And it didn’t help any of us. I’m also not saying we don’t still eat the fries. We do. We just choose our moments, and hope that over time, feeling better will help us all to make better conscious decisions about our health.

So, vive la change, for now.

The call of the sprinkle covered cookies is strong. I hear it in the wind some days. Some days, I answer it. Other days, I trick it, by putting diversionary sprinkles on high fibre fruit pulp muffins…

It’s life, by a thousand (sprinkle) cuts.


Valerie’s increasingly randomly ravings can be found at Jump on the Rollercoaster.

1 comment:

  1. I just started looking at food labels more closely. It's scary how much is in foods that can cause problems. Best of luck to you!