The Longest Test
I’ve always believed in this: If you do everything you are supposed to do; if you work hard; if you really work hard at getting something, there’s no way that the universe will not compensate you for your efforts. This used to be my motto throughout my five years at college… While my boyfriend would make himself sick with headaches worrying that he wouldn’t pass this or that exam, I’d always go in cool as cucumber, completely sure that in the end it would be okay because I had done everything I was supposed to do in order to pass the exam. I used to call this my “Universal Law of Compensation”.
When your toddler doesn’t eat the nutritious food you give him, maybe you try one more thing, and then, everybody tells you “It’s okay. He’ll be fine. He’ll keep growing. My child lived on carbs and apples all his childhood and he/she turned out okay”. But when you have an autistic toddler, it’s very different…
Every single thing you read tells you that your child is really sick because he’s allergic to gluten, or dairy, or because he’s not assimilating protein, or because he has too much yeast in his system, and his intestinal microbial flora is out of balance (too many bad guys), and all of this is making it so his brain is not getting what it needs to develop correctly. The food he’s eating is making him act as if he is on drugs. So your job is to get him on one of the thousands diets out there aimed at “curing” his autism through his body.
And for some reason, although I’ve resisted this whole theory for months, recently I have decided to believe it and become a cooking mom, and try to get him off of processed foods, and refined sugars, and limit his carbohydrate intake so eventually I can stop complex carbs completely and get him on the Specific Carbohydrate Diet which promises to have recovered or at least improved the autism symptoms of 85% of the children who have gotten on it.
And I get the books and the ingredients, and I try the recipes, and start working towards this goal. And MY GOD!!!! Have I found yet one more way of whipping myself to death on this unbearable damn lesson I’m having to learn about detaching myself from THIS outcome. Because, somehow through the cracks of autism, my Universal Law of Compensation has died, and I constantly get trapped on this feeling that I’m not doing enough, and if I don’t try everything, my child may end up never becoming independent. How can I just do Son-Rise if something deeply troubling is happening in his body… If his brain is malnourished…
Around the time when Joaquin turned two, he stopped drinking milk. There was no way to make him drink it. So after many attempts I stopped worrying, and because he also rejected yogurt, cheese, fortified orange juice, and many other calcium-rich alternatives, I stopped suffering and just resigned myself to the wisdom of his body. And four months later I learned that he is autistic, and perhaps it was the lack of calcium that affected the growth of his brain. So we got calcium supplements and started sneaking them into his fresh juice which at the time was his most favorite drink.
Today I’ve gotten slapped so many times… He asked for pancakes, which I happily made because this is a legal SCD recipe I’m hoping will replace the morning bread that feeds his yeast (yeast everybody tells me he MUST have just because he is autistic). And because he’s suddenly decided not to drink juice anymore, I sneak the fish oil and the calcium in the pancake batter. The result is delicious, and he ate it happily yesterday. But not today. Today, after I’ve made the pancakes, he decides he doesn’t want them. And he doesn’t want the juice. He wants bread. And okay… He can have one slice because I’m trying to slowly transition him into the diet so he doesn’t just stop eating if I make too huge a change… But what about the rest of the day?… How do I keep battling this unwillingness to eat the good food?…
I’ve spent an hour in the kitchen making the pancakes, the juice, then egg, then redoing his juice a little sweeter to see if I can get him to have a little calcium since the pancakes didn’t go in (I ate them and they were delicious). But he won’t drink any of the juice. And I am so tired of hearing and starting to believe all this bullshit about calcium, yeast, vitamin D, diet, protein, DAN doctors, peanuts are evil, this and that, and beating myself so many times trying to do all this shit for him, trying to make him healthier than he already is, and failing at it, and not knowing because all this stuff is so invisible… It means nothing that he’s healthy, that he has a strong immune system, that he’s never taken antibiotics, never had an ear infection, only four colds in his whole life (three in his first year), that he has good muscle tone, fine motor skills, 97 percentile height, appropriate weight growth, he’s not constipated, no diarrhea that I can recall, and his poops look healthy… Collective wisdom says “He is autistic; therefore he is sick like all autistic kids”. And after all this struggle I’m supposed to be magically happy to do Son-Rise.
In college, there was the day of the test, and days later, you’d get your grade. In autism, there’s no test day… Just this constant struggle of living and living and trying, and waiting to see what happens. And hoping that in the end it will be okay. But on the way there, there are so many traps that make you feel like you’re not really living. You’re just killing time waiting for the day when you finally get your grade and see if you did okay. But that day may never come.
