That week, on March 28th, 2000, Zachary had returned my butterfly kisses as I changed his diaper. He found this very funny. I recalled a class I had taken over fifteen years ago - Abnormal Psychology. At that time, autism was attributed to the lack of bonding between a mother and a child, the old “cold mother” syndrome. I remembered, back then, being appalled by the fact that a mother could be so cold to her child that the child could spend hours in a corner just “rocking” himself/herself. I had found the whole subject repulsive. It was as though I did not even want to hear about something so horrible. I remembered sitting in that class and thinking that would be something I would never live through. I would love my children. Yet, here I was, years later, facing this very disorder. The difference was that this was happening to me and I knew I loved my son, as much as I loved my daughter and that the “cold mother” syndrome was a bunch of crap. Those butterfly kisses he had found so funny told me there was still a little person within him, a little person who loved me as much as I loved him. My heart clung to those little butterfly kisses...within these kisses was my ever so tiny and fragile glimmer of hope. I had not lost him, not yet!
As we prepared to meet with the pediatrician, Fred and I intensely researched autism. From 7:00 a.m. to 3:00 a.m., almost every day for the next two weeks, we read absolutely all we could on autism. We ordered books via the Internet, to be delivered overnight, and devoured them the next day as we sought to satiate ourselves with knowledge about this disorder. Between the two of us, we had read over twelve books by the time we were ready to meet with Dr. Johnson and had poured over countless articles on the Internet.
Many articles we had read as well as a most valuable book, Unraveling the Mysteries of Autism and Pervasive Developmental Disorder, by Karyn Seroussi, published in March of 2000 (talk about timing) indicated what appeared to be a strong link between autism and diet.
I spent the better part of the evening on March 29th at a health food store in the suburbs of Chicago. Author after author seemed to believe that autistic children could not digest gluten and dairy proteins. I have to be honest, I had never heard the words “gluten” or “casein” before I began researching autism and I considered myself to be a very well educated person, having two undergraduate degrees (one in Psychology and one in Finance) as well as a Masters of Arts in Finance. I had also taken close to two years of graduate work in Psychology and Business Writing. So, with close to ten years of university, how could it be that I had never even heard of these things called “gluten” and “casein”? Fred had heard of them though. He had a background in agriculture.
At first, it seemed simple enough; “gluten” was something in almost every grain, wheat, barley, oats, etc. OK, I could deal with that…. so he could not have “gluten”... and “casein” was a “dairy protein”. I would just go to this special food store and buy foods that did not contain these things and go from there.
As things would go, it would not be that simple. I spent over four hours in the store reading labels only to find out that the great majority of foods, he could not have. Almost everything contained dairy or a gluten containing grain he could not eat. In researching autism there were names of products I had learned needed to be avoided. These were words like: Wheat, Oats, Barley, any “gluten containing product”, Casein (another word for “dairy protein”), Whey (the liquid part of milk), Malt, Lactose, Milk Solids (or any product with the word “milk” in it). Artificial Flavorings and Food Colorings or Preservatives (nitrates and nitrites, etc.) were also to be avoided. And then, there was this thing with phenols Karyn Seroussi had also mentioned in her book. I had found that section too short when I first read it. As I scanned parts of her book as I prepared to write this book, I noticed she had mentioned one example, in particular, where a little girl had eaten bananas and had had a very adverse reaction. Foods high in phenols included bananas, apples, tomatoes and raisins.
For now, I knew for a fact the main things were the dairy and the gluten. I would avoid the high phenol foods also. As I very slowly worked my way through the aisles of the store, I very quickly came to realize just how hard this diet thing was going to be.
I came out of the store with a few things I knew Zachary could eat: rice products, organic French fries, uncured meats, etc. I had enough to meet his nutritional needs for that week. I would work more on Zachary’s diet in a week or so. The food was one thing, but, before my battle could really begin, I had to gather as much data as possible to plan my strategy. I began with the visit to the pediatrician on April 3rd, 2000. First, I had to confirm my suspicions. Armed with my DAN article that outlined many of the symptoms of autism, most of which I had circled in red because Zachary displayed these behaviors, I entered the doctor’s office. The article I had found on autism was approximately twelve pages long. I went through all of the pages with the pediatrician, showing her the circled items. She sat there, taking notes, inputting them into Zachary’s file, every once in a while, looking at Zachary who was busy spinning a toy on the floor and basically kept to himself and never looked our way. As I finished going through the article, I again, broke out in tears and said in a quivering voice: “So, do I have a reason to be concerned”? “Yes”, she answered in a soft, gentle voice, “you do”. There was that inner feeling of death again, only this time, there was also anger that my previous pediatrician had missed this. Had he not notice that Zachary’s ears and cheeks were always red? Fred and I did not realize these were signs of food intolerances, but should he not have known? Should he not have mentioned something? Perhaps I was looking for someone to blame, someone other than myself because I missed so many signs. Blaming someone else was not going to change the situation but I felt betrayed by the medical profession. After all, I basically had to diagnose my own child. How long would Zachary’s problem have gone “unnoticed” had Fred and I not figured it out for ourselves? Along with the anger, there was also relief in knowing that my suspicions had been confirmed by a medical professional, that someone finally saw what Fred and I saw. I could now plan my attack on this disorder. I needed to focus on “saving Zachary”, a phrase/task that would become paramount in our home.
By the end of April, Fred and I spent literally hundreds of hours researching the subject of autism. It was all we did, day and night… read, read, read. Forget the housework and other trivial matters. We were starting the battle to save the life of our son and time was of the essence. Reading breaks were spent hugging Anika and Zachary and caring for their basic needs. I hugged my children differently now. I cherished each of Anika’s sweet gazes and wondered what would become of my son.
Zachary had always been the “perfect baby”, he “never cried”… words I had written in my journal soon after he was born, words I once treasured as sweet memories of my perfect baby now haunted me to the deepest of my inner being. My perfect baby had been replaced by a very vulnerable, and sick child. How could this have happened? I thought back, looking for answers.