So, about a week ago Oliver had a piece of pizza. I watched him. And I waited. And I watched some more, trying to be as objective as possible. Mostly what I saw was just a very, very happy boy. After that my heart wasn't really in it anymore.
Going GFCF wasn't really that difficult for us. I want to say that it was even easy. Give me some rice noodles, fish sauce, soy sauce, sugar, lime, basil, meat, chili peppers, maybe an egg or two and I can usually whip up something in about 20 minutes. And usually it would be gobbled up by just about everyone except Sami who doesn't eat these days just to be contrary.
We started the diet on August first and kept it up, without infraction, for almost 14 weeks. But if there was any difference in Oliver is was extremely subtle. Extremely subtle. Oh sure, there were times when I thought he seemed more this or less that, but there were an equal number of times when he was dysregulated and I had to wonder if it was him or me. Because really, I'm often very dysregulated. And we're a unit, my boy and I. So in the end, it was really hard for me to say that the diet made any difference at all. Except that without all the bagels I dropped five pounds.
But here is the interesting part (to me, anyway): I'm feeling a bit guilty about it. You see, the day after the piece of pizza I loaded the boys into the car and took them to the cookie store. Both boys know the downtown bakery as the cookie store and going there is one of our favorite outings. "Let's go on an adventure", I'll say. "To the cookie store!!" Then, we pile in the car and I drive a half mile to the city center. I park in the parking garage, we make our way to the bakery, go inside and order up four cookies for a dollar. I like the snickerdoodle and the boys both like the chocolate crinkle or chocolate chip. I give Oliver the money and he pays the lady, then we find our chairs in the back of the little seating area and have at it -- each of us seeing who can eat our cookie the quickest and lay claim to the fourth. Normally Oliver wins but usually I can convince him to give me half.
I love taking the kids to the cookie store. I love everything about it. I love how excited they are to be in a parking garage. I love how the bakery smells. I love how competent Oliver is at navigating his part of the adventure. I love how Sami gets covered with gooey chocolate. I love how the bakery ladies cluck over how handsome my boys are. And I love how someone looking at us from the outside would think we are just like any other family -- how for that half hour excursion I feel just like any other family.
But then a little annoying voice in the back of my head says things like: maybe you just didn't do it right. Maybe you didn't try long enough. Maybe it takes six months. A year. Maybe you should have also cut out soy. Or corn. .... Or maybe the diet was just preparing his body for what should have come next. Anti-fungals? Pro-biotics? Zinc? B-12? And what? You're giving up almost fourteen weeks worth of work for a cookie???
So I argue with myself and say: "Well, no, actually. It was four cookies. And two happy smiling boys. And the ladies who cluck over my kids. Even if one of them has autism and won't engage them in conversation but thanks them anyway with his hearty appreciation for their cookies. It was my strong desire to just live life with my boys. To stop weighing and measuring and examining every little moment.
It's an argument that will probably be on-going with me. Every time I hear about someone whose children made incredible progress on the diet or by following a DAN protocol I'll probably wonder if my instinct was correct, if I was just seeing what I wanted to see, or if I gave up too soon, didn't do enough.
My sister-in-law, who has Down Syndrome, turned 50 this year. I remember that when we were trying to find which direction to take with Oliver, my mother-in-law told me (well, Nik translated for me) that when her daughter was very young they didn't know what caused Down Syndrome and that some believed that blood transfusions and other similar kinds of interventions would help "cure" or lessen the symptoms. There were doctors out there who did these sorts of things. Nik's mom did all the research and eventually decided not to do any of it. She would have had to travel a great distance and it would have been costly. Besides, she said, her daughter was always a very happy child. She told me that she thinks that the understanding of autism today is where Down Syndrome was fifty years ago. So I often wonder how long it will be until we look back at today and know -- really know -- what it is and what to do to help lessen the challenges that face kids like Oliver. I hope it is in my lifetime. And I hope I don't regret all those cookies.