So we thought about it. And thought about it. Then thought some more. When I finally found and showed my husband a printout of treatment success rates from the Autism Research Institute, we decided to give the biomedical approach a shot. Almost 70% of parents surveyed by the ARI reported their child’s autism symptoms “got better” with a GFCF diet (a ratio of 24:1 better to worse). Removing just wheat had a 30:1 better to worse ratio, and removing just dairy had a 32:1 ratio.
Because of its higher success ratio, and because it seemed easier than GFCF or even just GF, we decided to go simply casein-free. That meant eliminating all milk and milk products from our son’s—and largely our—diet.
Last week, then was sort of a prologue to going completely CF. Last Monday I bought a half-gallon of coconut milk from the normal grocery store (I have a fear of grocery stores to begin with, and the natural food store was too intimidating to me at this point). I read The Autism and ADHD Diet by Barrie Silberberg, as well as any information I could find online. I spent hours on the Autism Speaks website, the Autism Research Institute’s website, the Talking About Curing Autism website, as well as others unrelated to autism, such as Living Without Magazine. I bought GFCF cookbooks. I messaged an autism support group on Facebook and asked if anyone had tried GFCF or just CF, and received many positive answers—though also one neutral. I messaged a few friends I knew who lived GF and/or CF for various reasons for advice.
All this time, Logan had stopped drinking dairy milk and was now getting only coconut milk at home, though he still received dairy all day at daycare. The good news was he loved his new “special” milk. I also bought a small box of almond milk, and he loved that, too. He has not asked for regular milk once, even when he sees me pour it for his sister.
Next, I informed his daycare about our plan to go casein-free. To my surprise, they told me there is a law that requires them to serve Logan milk and they needed a signed form from Logan’s pediatrician to offer him anything else.
So I called his doctor. She immediately sounded wary. But I persisted, as I walked heatedly down Washington Avenue from work to my car with traffic flying by me and just as heatedly told her that we are going to try this. It’s worth a shot. She reluctantly agreed to sign the form as long as it was understood it was only for a trial basis.
The next day, form in hand from daycare, I attempted to fax it to the doctor’s office. Of course, I couldn’t get it to go through. After work, I called upon all the courage I could and drove to the natural food store. Of course, I couldn’t even find it.
But I kept driving, and I actually soon found it. I tried my best to ignore the crowded aisles and overload of choices, which always defeat me at the normal grocery store. I tried to be OK with looking lost and helpless, and I actually asked an employee for help. I’d brought a list of meals Logan’s daycare would give him that week, so I knew I needed substitutes for yogurt, cheese, and French toast. I actually found all everything on my list.
This is major for someone who freezes when asked by her husband to go “grab a thing of pickles” when grocery shopping together. Have you seen the pickle aisle? Do I need dill or bread n’ butter? Slices, spears, whole, minis? Organic? Kosher? Generic? That brand, this brand, the one on sale? Why are there so many f**ing different jars here? I just want a thing of pickles!
I left the natural food store feeling proud though also felt a bit penniless. Everything seemed so expensive (not that I really knew, since my husband does most of the shopping). As I drove to daycare to pick up Logan and Sadie, I breathed a bit easier. I turned on the radio and rolled down the windows (then I rolled them up because it was 95 degrees out.) But I was happy: I had a plan for my son, and now I had the tools.
Feeling: Positive. Or, as Logan is learning to say, “in the green zone.”