Tag Archives: GF/CF

Adjusting

More from “Nigel At Six:”

We moved into a new house a few months ago. It’s on almost half an acre, with lots of trees and even a playhouse in the backyard. The boys really seem to like it; for the most part they’ve adjusted well to the change. The only difficulty Nigel’s had since we moved in happened about two months after we moved in when the landlord, without notifying us, had bark chips put in areas of the front yard as a landscaping element. I knew Nigel would initially have a problem with it, because it was new. I had just gotten home with the boys on a Saturday afternoon after they had spent the night at their father’s house. Nigel got out of the car and immediately began trampling the bark, shuffling and dragging his feet through it, sending it flying. Brian [my then-boyfriend] immediately started lecturing Nigel, not realizing that it was Nigel’s way of adjusting to something new. I tried to tell Brian that this was Nigel’s way of learning about something foreign (What is it? What is it doing there, when it wasn’t there the last time he was in the front yard?). I explained to Brian that Nigel’s anxiety level goes up when he doesn’t recognize something, especially in his own home. “Well, that doesn’t make it right for him to destroy something that somebody worked on all day,” Brian said, totally missing my point. Nigel could not understand that someone had spent time arranging the bark. He was just trying to assimilate it into his world the only way he knew how. I told Brian that probably tomorrow Nigel wouldn’t even touch the bark; it would no longer be foreign to him. (I was right.) The one thing Nigel could understand was that in dragging his feet through the bark, he had made a mess, and when I pointed that out to him, we got a broom and he helped sweep it up.

[Next I wrote about our experience with trying the GF/CF diet.]  . . . There may be supplements he can take to alleviate some of the symptoms (of autism), which of course I intend to look into as soon as I can. Sometimes I berate myself, thinking, why wait? Why not now, instead of writing this? Why not do everything I can to fight this? I don’t think I have an acceptable answer. There are many components of my answer. One part is because I’m so tired; I don’t want autism to run our lives (but if I just let it be, then it is running our lives, isn’t it? It might seem that way to some. But to me, when we’re at home, we function as a family at a near-normal level. Or at least, it feels nearly normal, and that’s good. It’s only in public that problems arise. So it’s almost easy to be comfortable with it in our daily lives). But mostly I don’t fight it because I seem to innately know that Nigel’s autism cannot be “cured,” at least not by current methods which seem to cure some types of autism. I know that Nigel will learn academically, and he will eventually learn about autism and how it affects him. In his daily life, he’ll work with it, and he will succeed on his own terms.

Our GF/CF Experience

As I contemplate making old-fashioned macaroni and cheese for dinner tonight, it reminds me that I have been meaning to write a post about the whole GF/CF (gluten-free/casein-free) topic. Over the years, and especially lately with the hey-day surrounding Jennifer McCarthy’s book, my family and friends have forwarded various articles about the GF/CF diet to me, asked if I’ve read the book, or asked me if I might like to try the diet with Nigel. Here’s the short answer: Been there, done that.

Back in 2000, when Nigel was five and a half, I was on one of my every-three-month trips to Barnes & Noble in search of new autism books. Facing Autism by Lynn M. Hamilton had just come out, and that’s when I first heard of the GF/CF diet. I thought, This is it! This has to work! It made sense. And I was so motivated after reading about the positive results: the increase in language, the decrease of problem behavior, the ability to focus and improve cognitive skills. I so wanted this to work, believed that it would. I immediately went to our local natural foods store and purchased GF/CF bread, cereal, cheese, soy milk, yogurt – everything Nigel would eat. And he ate it. I could tell he didn’t really like it and wasn’t too enthusiastic about it. But I had him stick to it because I knew consistency was key to having the diet work. I told his teachers and therapists so that they wouldn’t give him regular milk and bread or crackers at school. I was so optimistic. Thought I had all the bases covered, that my years of research would finally pay off.

And so I watched my son, hoping to see some improvement after the first week or two. And then going into the third week I began to realize that, not only was he not improving, not talking more, he was actually regressing. I thought, Okay, maybe it will take a little longer. We’ll stick it out. And then going into the fourth week I began to notice that he was looking sickly, he had dark circles under his eyes, was lethargic and had very little appetite. By the fifth week he was even worse, and I had to admit that it was not helping at all. So I scrapped the GF/CF diet, let him start eating the foods he had eaten previously, and within a week he was back to his normal, healthy, neuro-diverse self.

I’m really glad that I tried the diet. If I hadn’t, I would have always wondered, every day. And I’m truly happy for Jenny McCarthy and all the many parents who have experienced such wonderful success with the GF/CF diet. I wish I could be in that group. I would be a huge advocate of GF/CF, shouting it to the world. And I’m glad that Jenny McCarthy wrote her book, so that more awareness could be raised about the diet and its effectiveness. But the fact is that it doesn’t work for everyone, like every other type of autism intervention therapy out there. In a way, though, I am an advocate for GF/CF, because I highly recommend to every parent of an autistic child: Try it. It might work for your child. And what would be more wonderful than that?