Last week, for the first time, I really felt as though I had an autistic child.
Which seems like a ludicrous thing to say, seeing as how I have had an autistic son for almost four years. But Logan’s always simply been himself to me—maybe more difficult sometimes than others, and maybe more challenging than “normal” children, but still he was always just Logan. Over the past two weeks, though, something changed, and I felt as though I was literally watching him regress in front of me. Every day was worse. Reports of aggressive behavior at school, screaming fits at school, defiance, refusal to follow directions … even aggression at home, purposely head-butting me or my husband, pushing his sister, stepping on our feet, screaming in our faces. Everything was so different.
Toward the onset of this change (a short while after), we’d gone back on the GFCF diet. And this time, in addition to eliminating casein and limiting gluten, we decided to commit to it fully. And more than that, we’ve also eliminated sugar (or as much as possible) and added probiotics.
But not the yogurt you think of when you usually hear “probiotics.” We bought a bottle of coconut kefir, which is water from raw young coconuts, and a jar of raw young coconut pulp, which comes with a warning, “open over a bowl.” And they mean it—the live cultures inside cause a mini-explosion when you screw off the lid.
Every morning we use these, along with coconut milk and a dash of cocoa powder, to make Logan a probiotic shake. I had to watch my husband do it three days in a row before I could make one without shaking myself. I know it’s not exactly cooking, but it still feels like trying to speak Greek to me.
The CocoYo (the brand we bought) has over 25 billion cfu (colony forming units) live probiotics per 4 ounce serving, which is ton; in comparison, a regular yogurt cup might contain only a few million. It’s not awful-tasting … but it’s different. Logan drinks it, but he has to be coaxed to do so with getting to use a straw (or two).
We were warned that trying probiotics might result in worse behavior before improvements were seen as the yeast in Logan’s gut begins to die and work its way through his system. Cravings for sugar, I’m sure, add to that.
My husband is confident Logan’s apparent regression is a positive sign, a sign that there is yeast in his gut dying. I have to say I’m grateful for (and simultaneously jealous of) his stoic determination this past week. While I’ve felt on the verge of collapsing for days—literally, my whole body physically hurts from shooting pains in my arm and constant headaches, and I can only imagine how awful Logan must feel—Jason seems so strong. Which is really weird, considering he was the resistant one to try the GFCF diet for a long time.
But the weird thing is, this time around, GFCF actually seems easy (probably because the probiotics and eliminating sugar is now the bigger challenge). I found GFCF substitutes for his daycare lunches and sent them all ahead of time in a big bag; we also learned we like using ghee rather than Earth Balance for butter. Meals have somehow seemed easier to decide on, and yesterday—a week in—Logan was actually excited for his GFCF macaroni and cheese. “It’s real mac n’ cheese!” he exclaimed. My husband’s idea to melt the fake cheese in chicken broth worked. That was a much-needed positive sign after a week of darkness.
Maybe it’s true that things seem darkest before the dawn. I hope so.
Feeling: Sad. Simply sad.