Love Tears & Autism Turns 1!
I suddenly realised this week that Love Tears & Autism is a year old. To celebrate I'll be publishing some excerpts from the book on this blog and then doing an electronic giveaway. Keep your eyes open for it and you could download the whole epub file of the book for free.
Given my focus recently on writing about food and diet, here's chapter eight from the book, all about our adventures into biomed...
Going all domestic
The next thing God taught me about love was that sometimes it means I have to stretch myself and do things I would never choose to do ordinarily.
In this case, it meant cooking.
Cameron and I started to hang out with Jen and her boys at their place. It was good to get to know someone coping with the same challenges that I was facing. Plus she was a great source of information.
One of her big interests was what’s known in the autism world as ‘bio-med’. It’s a nutritional approach which argues that giving supplements as well as a diet rich in the things the child is lacking will help brain function.
The second time we went to visit she showed me an enormous chest freezer she had bought to store all her son’s special food in, rather than having to cook something different for him every night.
“Have you heard of the gluten-free, casein-free diet?” she asked. “I think it’s going to really help.”
“I don’t even know what casein is!” I laughed, and then groaned. “I’m so not up for changing his diet. I’m just not that mother who spends her time cooking everything. I think I’d go crazy.”
It was true. I was neither enthusiastic nor accomplished in the kitchen and besides, I had heard that biomed supplements cost families thousands. We were already spending more than we could afford and I had no intention of going down that route.
However, after our RDI consultant met Cameron, one of the first things she mentioned was looking into diet.
"I don't normally recommend this but I think he will benefit from it," she said.
One of his problems was a recurring rash around his mouth, which he licked continually all day and night. He also loved putting metal in his mouth. My keys were constantly dripping with drool as a result.
"He might have a mineral deficiency," she said. “It’s something to try, anyway.”
I didn't know what to do about this. It looked like a huge area to investigate. And how was I to find the right doctor after all my negative experiences with paediatricians and psychologists so far?
Thankfully, Jen had the right information. She had found a GP with a particular interest in autistic children. And even better for our hip pocket, he bulk-billed! There would be no expense for us.
We made the appointment. It was an interesting experience. His practice is in Sydney’s most multicultural suburb, and his grotty little waiting room was filled with people of all colours, speaking in many different languages, in different ethnic dress. After waiting for an hour, Cameron was more than ready to be seen, and finally we went in to meet the doctor.
He talked at great length about essential mineral depletion, under-methylation, digestive enzyme support and a lot of other complicated terms that I could not remember or replicate for anyone else. But he did it with such authority that I believed everything he said and decided to do everything he suggested.
At the end of the consultation, he filled out several prescriptions for supplements and ordered a battery of tests. As he told me the costs of each one, my heart sank, but I thought, ‘Well, I’ll try this all once. At least we can see what happens.’
First on the list was to get a urine test done.
I was slightly worried about collecting the sample because at this stage, Cameron was still wearing nappies all day. I rang the collection centre and said, “I’m getting this test done but my son’s not toilet trained. What can I do?”
“Easy,” said the cheerful girl on the other end. “Just come in and get a special collection bag for it. Then once you’ve got the sample, bring it in for testing.”
I drove the 15 minutes to their office to get the cute little collection bag. It was rather ingenious. You literally stick it on the appropriate place, put on the child’s nappy and wait.
Being a little worried about how Cameron would react to a bag stuck on his privates however, I decided that the only way I could get it on and keep it on without him ripping it off in a fit of rage would be to put it on while he was asleep and collect the wee overnight. I stuck it on, congratulated myself on my clever thinking and went to bed.
The next morning we had an appointment to get his blood test done, so Andrew and I dropped Jasmine off at school and went up with both boys, urine sample in tow. Unfortunately due to my bad memory for roads and places, we got lost, arrived at the clinic three minutes late, ‘missed’ our appointment and then had to sit in the waiting room for another 45 minutes.
By the time we got in for the blood test, Cameron was not in a mood to co-operate. There was no way he was going to sit still so that a needle could be pushed into his arm, and he needed to be held down. Reinforcements were called, and I was firmly told by the nurse to leave the room once I started to cry at all the kicking and screaming that was going on.
So I wasn’t feeling too happy when after everything was over, I handed the nurse the urine sample and she said, with disdain in her voice, “I can’t accept that. It’s not frozen.”
“Not frozen?” said I.
“Yes. It has to be frozen. And is it the second void?” she asked.
“Second void?” I repeated blankly.
“Yes – the second wee of the day. It has to be the second wee of the day,” she said.
No-one told me that on the phone, I thought grimly. And taking my urine sample, I stalked out, prepared to bring one back later.
That day, I managed to catch his ‘second wee’ in another little collection bag. With glee, I stuffed it into the freezer and in the morning I was back with my frozen sample in an esky.
The junior nurse looked at me mildly apologetically. “Um, we tried to ring you, but we’d already sent your phone number away with the paperwork from the blood work. We can’t accept your sample. Sorry.”
It turns out this time I had ‘forgotten’ (their word, not mine) to catch the sample in the dark, wrap it in silver foil (shiny side out, dull side in), then freeze it.
I went home. I was determined not to be defeated. The next day I caught the second wee of the day in darkness. I wrapped it in foil (shiny side out, dull side in) and I popped it in the freezer. The following morning, I drove back up to their office, lugging an esky.
“We can’t accept that sample,” said the aggressive senior nurse. “You didn’t mix it with the acid. You weren’t listening,” she said.
“Excuse me,” I said, my blood beginning to boil. “I’ve been listening ever since the first phone call. You’d better tell me exactly what I have to do and I will do it. I have been following the instructions I’ve been given ever since the first day!”
We went through it twice. I went home and again, did what I was told. I caught the second wee of the day in the dark, poured it into a little container with acid, put the lid on tightly, shook the container, wrapped it in foil (shiny side out, dull side in), put it in the freezer. And then I took it back to the office the next day.
The senior nurse looked at me blankly. “But it’s frozen,” she said. “We can’t take that.”
“Yes, it’s frozen,” I said at high volume. “It’s been caught in the dark. It’s been mixed with acid. It’s wrapped with foil. It is frozen, just like you wanted.”
“But... we always freeze it on dry ice,” she said. Then she added, defensively, “Well, I’ll send it in, but I can’t promise that you’ll get the correct result. You might be wasting your money.”
My lessons in love failed at this point. I felt like sticking my tongue out at her as she stalked down the hallway, taking my son’s precious urine sample with her.
But the saga was over, and soon I was back in the exotic but rundown surgery, waiting to see the doctor about the results.
I understood some of what he said. I didn’t understand a lot of it as well. But my layperson’s version of it all was essentially that the brain does not stand alone. Gut function affects the brain. Nutrition affects the brain. Levels of copper and zinc and other minerals affect the brain. So a neurological disorder can be helped by treating other systems in the body.
My grasp on the theory was shaky, but practically, I was delighted to go home with a list of things to do that would help.
The first thing was to bite the bullet and put Cameron on a gluten-free and casein-free diet, like Jen had originally suggested. (Casein, it turned out was milk protein). My heart sank when I heard it, but I could understand why I needed to do it.
I started out by looking at what he did eat. It was a bit of a shock to realise that he only ate fifteen different foods. That’s a fairly limited diet for a three year-old. The entire list included: pasta, beef sausages, ham, cheese, vegemite sandwiches, apples, watermelon, cereal, milk, sultanas, crackers, chocolate cake, yoghurt, ice cream and tomato sauce, if indeed, tomato sauce is actually a food. You'll notice there were no vegetables in the list.
Getting rid of the gluten was the first challenge. These days, enough people are on celiac diets so that you can find wheat substituted products in the supermarket. Some of them taste a bit dodgy (and my daughter point blank refuses to even try gluten free food) but most of them are pretty good. The milk part was harder to substitute as many gluten free foods still have milk solids and casein in them.
I looked back at my list of foods. Every single item except apples, watermelon and tomato sauce needed to be modified or replaced on the GF/CF diet.
But then I hit another snag. The doctor said that Cameron’s mineral levels were out of whack. He had incredibly high copper and really low zinc levels, which causes 'under-methylation' of the brain and the autistic symptoms.
“He’s got to avoid foods with copper in them,” the doctor told me, in the middle of a long and convoluted paragraph. I grabbed onto it as something practical I understood and wrote it down.
But then I had to work out which foods contained copper. It turns out ham and pork have high levels. Dried fruits and chocolate are also culprits. And soy is another copper-rich food. So if I substituted cow’s milk for soy milk and yoghurt for soy yoghurt, I would be pumping even higher doses of copper into his body.
I crossed off the high copper foods on my list and was left with this:
GF pasta, GF beef sausages, GF sandwiches, apples, watermelon, GF cereal, rice milk, GF crackers and tomato sauce.
It wasn’t exactly the world’s most balanced or varied diet.
If that wasn’t enough, I then started looking at ADHD, and the recommended diet for that. This was different from the autism diet. It removed all preservatives and colours and foods with salicylates in them. If I followed that too, I’d have to take out apples, sausages, and the all important tomato sauce.
The doctor had suggested introducing more, different nutritious foods into his diet.
“Look, I’m all for that,” I said. “The big problem is that I cannot get him to eat them, no matter what I do.”
“You’ve just got to be perseverative,” he said and moved on to the next topic.
I’d never even heard the word before but I could guess what it meant. I sighed. It seemed so hard to keep going when Cameron literally ran away from the dinner table in hysterics at the sight of something new on his plate.
I searched the diet books I’d been reading for solutions. How did these people make their fussy autistic children eat broth, green peas, organic chicken, wheat germ and freshly squeezed juices? From all I could tell, there was a lot of screaming involved. And I was guessing it wasn’t all from the child.
The guilt began to set in. I knew his body needed good nutrition, but I just couldn’t force the stuff down his throat. He was so anxious that he just wouldn’t cope. The best I could do was try to find reasonably healthy alternatives and offer them to him with my fingers and toes crossed and with a few desperate prayers. More often than not, he rejected them, but occasionally I had success.
I became the queen of the hidden vegetable. I made fresh carrot juice and mixed it in with his drinks. I added grated zucchini, (skins removed because they’re green) eggs and almond meal to gluten free bread mixes. I even got my local butcher to add pureed vegies to a batch of GF sausages. My greatest triumph came when I bought a doughnut maker and managed to get him to eat doughnuts made with banana and sweet potato – and lots of icing, of course.
For the next year and a half, my favourite kind of shopping was at health food stores and my ongoing project was to try to create healthy food that might, just might, get eaten. The bad days were when I threw out concoctions that failed through my inadequate kitchen skills, or were just plain rejected. The good days were when he ate an egg, or a doughnut, or drank a mouthful of carrot-infested juice.
The bad days outnumbered the good days by about ten to one.
That was the food. Then there were the supplements.
These were a mixed bunch. The digestive enzymes that he was supposed to eat with every meal were yummy little things, just like lollies, and luckily Cameron had never had an issue eating lollies. The Omega6 oils could be rubbed straight into his skin – another easy thing to do. The zinc-enriched mega-vitamin liquid, on the other hand was completely foul and a nightmare to administer.
Cameron refused to swallow capsules of the stuff, even though I tried every trick I could find, including ordering a specially-designed, capsule-taking drinking cup from the US. He quite sensibly refused to take it as liquid on a spoon or a dropper because it tasted worse than bile. I tried mixing it with a flavoured masking fluid the chemist supplied and then tried to hide that in vegemite, tomato sauce and juice throughout the day, but it was still very difficult to predict if he’d eat it, and if he’d end up getting the right dose throughout the day.
After a number of months of fighting and tears and tantrums, I decided that just like forcing food down his throat, making him take the medicine was raising his anxiety levels too much, which was being counter-productive to the remediation of his autism. I stopped administering it. To be honest, I’m not sure I saw the effect of it anyway.
What I did see a result with was the removal of the gluten and casein. Cameron’s eyes became less glassy and more alive. He seemed to understand more and communicate more. He took some steps forward and achieved some milestones. I could see this would be something worth pursuing in the long-term.
From being a reluctant ‘diet mum’ at the beginning, I followed the nutrition trail with enthusiasm for about two and a half years. I went to seminars, read books, and learned as much as I could. I believed it all and still am so truly convinced that it works that for a long time, at every meal time and snack time I felt hugely guilty because the fact remained that several years later, he still wouldn’t eat good stuff. He refuses most meat and all vegetables, eggs and fish. He loves sugar and chips and lollies and ice-blocks.
After a few years of guilt, I decided that perhaps I needed to give myself a break. He’s still GF-CF and I still try to provide balanced meals, but I was no longer beating myself up over it. There were still too many other things I had to deal with.