This week is the Maestro's fourth birthday. In many ways he is the same boy now that he was a year ago. He still loves music as much as he did then. He still loves cats. He still loves to play little tricks with a sly little grin.
This week-end we were listening to Bach's Unaccompanied Cello Suite No. 2, the sixth part. We had currently have two versions of it, one by Yo-Yo Ma, and one played by Edgar Myer on the Bass. As we listened to each version over and over, the deep growling of Myer's Bass, and the fast-fast phrases of Yo-Yo's cello caused him to rock back and forth, shaking his head like a teenager at a rock concert. He was sitting in a cardboard box; it was a Kitty-box. As the music crescendoed, he began to sway, wider and wider until the box fell over and spilled him onto the floor. Lying on his side, he would laugh, look over at me and say "Do you see how into music I am?" Then, we'd do it again.
The present he was most excited for this year was a plastic toy saxophone we found at the dollar store. As a two-year-old he decided that he wanted to be a conductor, and he has never wavered from that decision. A conductor needs to know all the instruments, and the Maestro loves to collect and create instruments of every kind. He has gone to bed now listening to the story of Tubby the Tuba. His new saxophone is lying there beside him.
In many other ways, the past year has been a year of incredible change and growth. In some ways I hardly recognize him as the same boy that drove me to tears a year ago. Last year, his birthday was a rare treasure, a day of calm, a day of composure, and everyone enjoyed playing together. I remember because it was such a sharp contrast from the days immediately before and after. It is hard to describe the many ways the Maestro made life a challenge. He moved compulsively-spinning in circles and jumping off the couch repeatedly. He was determined to win any battle, even when there was no battle to be won. He woke-up grumpy, and stayed that way for hours.
This isn't to say that he wasn't often fun. He took delight in the most amazing things, and loved to play. We just didn't have any way of predicting or controlling when things would go well, and when things would go so very wrong. He didn't have yet the curls that now adorn his head, but he reminded me strongly of the poem my parents quoted to me:
There once was a boy with curl in the middle of his fore'ead.
When he was good, he was very very good,
And when he was bad, he was horrid.
By his third birthday, we had learned about a condition the Maestro has called Sensory Integration Dysfunction, or DSI. It is a condition in which sensory input is not processed efficiently. Some senses are too strong, like his hearing. Others, like input from his muscles and joints, are not strong enough. Loud noises drove him crazy, and he continually felt the need to run in circles and jump off the furniture so the shock of landing would register.
Knowing about DSI gave us lots of new things to try, and a new vocabulary to discuss his specific challenges and how to approach them. One night, as Riley was reading about sensory issues, she came across some information that has changed our lives. Many of the symptoms of DSI are also found in Autistic children. Researchers (a generic title for "They say" people, who in this case have a name – Knivsberg, a researcher at the University of Oslo, Norway) have discovered a link between incompletely digested food proteins and many of the symptoms of autism. Specifically, peptide fragments of gluten and casein activate opioid receptors in the brain, and cause such things as poor habituation, social indifference, repetitive behaviour and varying analgesia. Removing gluten from the diet, as well as any dairy, can cause a marked improvement in these and many other symptoms, many of which are actually symptoms of DSI, not of autism itself
After reading some of the primary literature on the subject, (not everything that you read on the internets turns out to be true, after all) we decided to give this diet a try. What followed were three days of complete chaos as the Maestro adjusted to his chaning body chemistry. It seemed to us like someone going through withdrawal from narcotics. I knew that something was changing, but what exactly was it?
By the fourth day, he leveled out to a more calm, more consistent version of himself — gradually becoming less grumpy, less prone to running into walls and people, more able to sit still, more able to calm himself when things go wrong. He is now more loving and playful with his little sister. He tolerates loud sounds much better than he used to, though he still prefers low registers and major keys. The Maestro did go back on gluten for a time, early in the spring. We wanted to have him tested for celiac disease, which requires that you be eating gluten. While eating bread and wheat crackers, all his sensory problems came back again, like they had never left. His blood test came out negative, so there is hope that someday he will be able to eat gluten again. When we will decide that it is worth the risk, I have no idea. Maybe never. We're all so much happier than we were then.
Some might look at how he has changed in the past year, now that his worst days are on par with what where some of his best days a year ago, and think that the changes are because he is now a year older. I know differently. I was there when we took him off gluten and casein, and I was there when we put him back on gluten for the celiac test. If this was a case of a boy simply growing up, he wouldn't have had the steep curve in February and March as we made our first steps in the GFCF world. This has not been a linear change.
In the past few months, his fine motor skill development has taken off. He discovered that he can draw, colour and cut out any musical instrument he wants, and glue it to cardboard. Never before has he had the ability to sit long enough to draw, or the patience to reconcile the drawing he wants to make with the one he can.
My immediate family all have problems with wheat in some way or another. My Mom had told me many times I would probably have more energy if I didn't eat wheat, but how do you just not eat wheat? It is everywhere, in everything. When the Maestro went off gluten, I did too, and it has made a big difference in my health. I need less sleep and I have fewer headaches than I did before. I've been accidentally "glutened" a couple of times since I gave it up, and instead of becoming less sensitive to gluten, I appear to have become more sensative than I used to be. A chocolate bar with crispy rice bits knocked me down for three days, and a turkey injected with "vegetable protein solution" gave me a killer headache and sent me to bed. I don't want to go back, either. For the foreseeable future, the Maestro and I are on this road together.
So what do we eat? Well, for one thing, I have had to learn to bake all over again. I discovered sorghum flour after just enough baking disasters to be able to appreciate how amazing it really is. There are few enough people who bake with sorghum flour that I have had to figure out for myself how to use it, and I started this blog, chronicling what I have learned. At this point, I think I can bake almost anything with sorghum that you can with wheat.
Bread is still tricky, and I haven't tried donuts yet, but the Maestro has never felt deprived because he can't eat the same food as everyone else. In fact, I think he kind of likes being able to have exactly what he wants, everytime. When they have cupcakes at preschool, he is the only one who gets to decide ahead of time whether he wants his with so much chocolate that it is black, or if he wants it to be vanilla. If you give him something to eat, he looks at it, looks at you and asks, "Is this wheat? Is it sorghum?" Since we started, he has rarely been tempted to eat wheat.
What changes in the next year? We will see. We should move this summer, with many changes associated with that. We don't know where we will go, or who we will find there, so it is hard to predict what is going to happen. I'll let you know in a year…