Yesterday’s blog post was about a hard day with Elijah, and I hinted that I might explain why he had a bad day. Here’s some backstory, as each story should have. In my youth I ate whatever I felt like eating. I was a big junk food eater, the kind that would bring boxes of candy to a party and when I started drinking coffee in University I would take it with 10 creams and 10 sugars. For me, as James has put it recently, food was fuel. If I found myself in the grocery store I would actually price out which drink would give me the most calories for the least amount of money. Fast forward a few years, I was in grad school, Erron was starting a nursing degree and we were expecting twins. We were poor, and if you think,”Oh yeah, I’ve been poor before”, just let this sink in, we made $6000 that year. We didn’t live off $6000, that would be impossible. We went into debt but pinched every penny we could. I remember going into the store and get the 96c pasta instead of the 98c pasta. We were forced to cook from scratch because processed food is just too expensive.
Move forward a few years. I’m still cheap, we make more money but have more expenses, we still cook from scratch for the most part and we are living in Chicago. We got an autism diagnosis for Elijah which wasn’t a surprise, but still weighed our hearts down heavily. Erron began to research treatments while I generally assumed that there wasn’t much that would be helpful when he was only 3. Erron read about the gluten-free and casein-free diet and asked me to give it a try. I thought it was all hokey nonsense and went into the primary scientific literature to prove it so Erron would drop it. I couldn’t find anything against it, I could find anything supporting it. The time needed to do a proper controlled experiment is years, the time to publish is probably a year or so more than that. All I had available to me was anecdotal evidence of parents who had seen improvements and, more convincingly, a video journal of a college aged kid who has autism and talks about how he feels when on and off the diet.
I wasn’t convinced, but I would let Erron try.
The GFCF diet is VERY hard at first. You need to eliminate all milk products and wheat products from your diet. Think about it. Not just avoiding milk and cheese and bread, but every single thing that has milk, or casein, or sodium caseinate, or milk products, or lactose, or wheat, (or rye, oats or barley as the fields are almost always contaminated with wheat). You can’t eat out, you have to read every label of every food you buy and generally can’t even trust the stuff you find in a your friends’ pantry. We had to get special soy milk, special noodles, special bread, get rid of just about every processed food because they are so formulated that they usually have one, the other or both.
I figure we’d give it a month, maybe… 2 weeks in we were putting the kids to bed. Petra needed her hugs and kisses and story and time sitting by her and Elijah was the kid who would just lie there and fall asleep. After putting Petra to bed, turning off the lights and stepping out to close the door Elijah called out to me, ”Daddy? I want a hug too.” My son who barely spoke, who wouldn’t look you in the eyes or respond to your voice just asked me for a hug. I was a BELIEVER. (even just writing this brings a couple tears back to my eyes remembering the feeling)
We kept up the diet, not just for Elijah, but for all of us. A 3-year old can’t tell the difference between my glass of milk and his glass of soy milk. If he is thirsty he just drinks, if he is hungry he eats what he finds, special diet or not. He started to make steady progress and I felt such great pride in what he was accomplishing. One day when Erron, her Mom and the kids went to the Museum of Science and Industry they had Kool-Aid slushies and the next day Elijah was back to screaming and biting and generally uncontrollable behavior. We decided that we needed to cut out artificial colors too. One more thing to label read… great.
Over time we have gone from just reading labels to avoid certain ingredients to a general trend in eating better food. Knowing that Elijah has sensitivities that modulate his behaviour has helped me to justify spending more money on organic food as a general rule is that the ingredient list is shorter and I don’t need to worry about artificial crap being added to make the food more shelf stable, addictive, pleasantly colored or whatever the hell they think they’re doing. Don’t get me wrong, I resisted eating organic because I didn’t believe the price justified the benefits. I didn’t really care for myself about pesticides, herbicides, non-genetically modified foods or the other mainstream organic arguments. It was easier to control what additives were in our food, but my payscale in Chicago made what we could eat organically quite limited.
Moving to Saskatoon I got a nice increase in pay, and with it came the ability to spend more on food. Today we are part of an organic co-op and most of the fruits, vegetables, grains, milk products (we’ve re-introduced cheese for everyone except Elijah as all veggie cheese is a poor imitation) and even some of our meat is organic. I believe that the food we eat is better, despite the added cost, and the availability of organic goods in supermarkets makes it so much easier to make that choice.
So where are we now? Oh yes, the bad day. Generally when we have to be away from home for a day or two we try our best to control our diet, but sometimes having food in your belly is necessary despite what other garbage might be in it. We definitely know when we slip up. When Elijah sneaks a hotdog bun from the girls’ empty plate or a chunk of blasted cheese. A day or so later he regresses, he bites, he screams, he might even wet his pants. This is not the boy we see day to day, this is the boy we had before the GFCF/color-free/organic diet. This weekend we were out of town for a funeral and being with family and at the service meant eating the food we were provided. Elijah had a few instances I know about where he ate something he shouldn’t. There were probably more that I didn’t know about too. It wasn’t a surprise that Monday was a bad day. It is hard to blame a kid for his behavior when you know it has more to do with how vigilant you were in making sure he eats right than him wanting to be “naughty”.
Today Elijah was back to normal. I was at work and got a phone call from him, he had pressed Erron to call me in my office and when I said hello he started telling me 100 things about his day (a little too fast and jumbled for me to follow it all), but it was probably the longest phone conversation we’ve ever had. He continues to amaze me, and I will continue to do right by him, and I have become a believer in eating well because I’ve seen it work for him, and me. (Almost forgot to tell you that my bodily response to eating poorly over the weekend was both stinky and runny… what happened to my belly of steel?)
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