March 5 earlier this year we flew back from a conference on Autism in Vancouver. I felt it was absolutely necessary we went come hell or high water. We felt Alex's progress had stagnated.March 6 we went on the gfcf diet, cold turkey and launched an assault on the yeast/fungus we suspected was in his digestive system. It wasn't just on a whim... the speakers (other parents and doctors) had described symptoms they had seen in their children on the spectrum. Alex had 9 out of 10 (10 being a capsule endoscopy) of the symptoms. Cut off from the opiate effects of gluten and casein (ever wonder why they call it "comfort food"?), he underwent a (thankfully) temporary regression. He went bananas. His ABA charts at school were all over the place. He nearly attacked his teacher. I got a panicked call from his IPP case manager.
By the end of the week though, he had calmed significantly, focused more easily and one day the week after, I came to get the kids from school. Dana, Alex and Alex's para Sev were waiting for me as usual in the big, very crowded gym. Alex spotted me first. He touched Sev's arm and said to her, "I see Mommy." I think I startled people when I screamed. He's continued to improve since then.
We haven't seen a monster tantrum since. He did become very agitated/spacey/aggressive/coming out of his skin one day when we were away... which was right after he got a hold of a glass of soy milk that had regular milk mixed in. It's obvious when he's had something he's not supposed to. Some people think it's torture to not let them have products like bread and cow's milk. It's 10 times worse seeing it completely scramble their system, watch as they go nuts, flitting from one thing to another but frustrated with everything like a really bad manic episode. Or that it doesn't seem necessary to take corn out of their diet, make sure he gets enough fiber or chase him around with bottled water because he can't remember to keep himself hydrated. Yeah... like it's better to sit there and watch him cry in absolute pain because he needed a suppository because he didn't do a #2 in a week. We do this because his digestive system's health is compromised. It's damaged. Why is it so hard for people to understand that he is a sick child? A test we had done on him showed the markers for inflammation and yeast and an overgrowth of a pathogenic bacteria... things that have been published in mainstream periodicals like Scientific American and Discovery. Why that happens in a lot of autistic children is still something they're trying to figure out. But they have figured out it does happen and it does have an impact on behavior, learning, brain development.
There are various things that can make the yeast come back. Sugar. Infractions (labels are not always very thorough about what ingredients are in the product). Certain supplements. So it's a constant battle to keep the fungus back.
3 days into Diflucan, he woke and stopped to look at me as I went around the kitchen and I said, "Good morning, Alex." Without missing a beat, he replied, "Good morning, Mommy." "I'm making eggs. Do you want onions in your eggs?" He looks at the onion on the counter and looks back at me, "Onions... yes." Towards lunch he brings me his favorite gf muffin mix and helps me make it. Alex fetches the eggs, the soy milk, the protein powder packet, the vegetable oil and he puts everything back in its place. He helps by stirring the bowl and putting the paper baking cups in the muffin pan. He usually doesn't like to wait for anything so he used to keep trying to check the muffins by opening the oven door a crack. "Stop, Alex. It's hot. It's not ready yet. You have to wait."
So, he pulled up one of his little kid chairs, planted it a few feet in front of the oven door and sat down to watch the timer. A few minutes later I passed him and Alex, elbows resting on his knees, chin on his hands, looks at me and says very matter-of-factly, "Waiting."
Yes, we are, sweetie.
