Mafe Maria: Personal stories by autism parent mentor, Maria Stultz

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.

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  1. On , Maria wrote:

    Blogging is cathartic. Just putting it down in words helps me let go of it a bit, and attempt to get back to the present, loving, and accepting attitude. Trying HARD…

  2. On , Kim Miller wrote:

    If you find the ‘magic’ combination to eating the healthy stuff let me know. After this baby is born I swear we’re going to eat better (I know I’ve said that before). -Kim

  3. On , Maria wrote:

    Well Kim… I have to say that you and Nat would probably like the recipes I’m trying. This diet is very strict, and I can’t even say we’re doing it because, since we’re dealing with a 2.5-year-old, we’re not starting it properly (with a week of hell), and we’re not introducing foods one by one, as we should. We’re just going straight to the “advanced food” (nuts) in order to replace the devils (complex carbs, yeast, and sugar). As to treats, you can basically do anything with nut flour and honey.

    The “magic” combination so far has been… Try a legal recipe for something he likes (e.g. cookies), then when he asks for the old stuff, you don’t have it, sorry. But you have this other very tasty thing. Since we stopped refined sugars (as much as possible), he’s surprised me by trying new things he never wanted to even look at before (yogurt, prunes, carrots, and today: cauliflower). He’s still not hot on those new veggies, but trying is a HUGE start.

  4. On , Ria wrote:

    Doesn’t the sunrise say that you are doing the best you can? And you are. So don’t blame yourself. I’m convinced Joaquin knows you are doing the best you can for him. And you have so much to offer.
    Off course you want to pass the test, curing Joaquin. And you are so right to want this. So you experiment. And I think you will find out what works for him, how his body will react to nutricion. Give it time. Alow yourself the time. And try to keep connected to that part of you that knows that it will turn out well. Because you did the best you could. You truly do.

  5. On , Maria wrote:

    Thank you for the kind reminder Ria. You are totally right. And this is all about me still struggling with myself…

    I had said I would take my time implementing this diet… The plan was to do this in a way that wouldn’t make me or Joaquin crazy… I was going to start adding recipes slowly and replacing “evil choices” one by one until at some point we would be there. But just a few days into this process, the perfectionist in me wants to be all the way there. Because the more I learn about all this biomedical theories, the more I get scared about the status quo. I start looking at the poor piece of wheat bread and the peanuts like they’re the devil, and giving them to Joaquin one more day makes me feel like hell.

    And so, although I had planned to do it slowly, I’m completely contradicting myself expecting a 100% perfect diet from day one, which of course, given my lack of time, is completely impossible. This diet is all about making EVERYTHING yourself, because you can’t trust package labels that may omit a tiny bit of a forbidden ingredient. It sounds like a good thing to try; it’s just very hard to get it all right immediately… Much more so with a two-year-old.

    Oh, so many falls to go through on this journey to “letting go”… Hope you’re doing much better than me. Love your latest posts about preparation for your trip :)