Becca’s Story. She is 30.
I decided that in spite of what the doctors believed, I would focus on something I could control – his diet.
I became obsessed with keeping track of 32-month-old Luke’s daily food intake, his bowel movements, his accomplishments, his regressions. I became a machine when it came to journaling. I was convinced that diet was playing a significant role in keeping him from progressing at the pace of others his age.
At our first visit with the doctor at Riley, we were told that what we thought were milestones appropriate for his age, were in fact nothing; that Luke was behind others who were nearly three years old.
Immediate guilt set in.
At that point, I was a stay at home mother of two boys. My younger son was extremely colicky, so I wasn’t able to spend much time interacting with Luke when Jake needed my attention. I blamed myself for this lack of interaction; fortunately, the doctor assured me that Luke’s diagnosis was not my fault. But how could I have not seen the signs? What I thought was his quirkiness was, in fact, behaviors that placed him on the spectrum.
I clearly remember the doctor arguing with me about Luke’s early achievements. I simply thought that Luke was a bit laid back, like his father. I also told myself that he is a boy; that he is the oldest, so his language would eventually come. Of course, I had no benchmarks with which to compare him. Because I had never been around other toddlers, I wasn’t looking for anything to be wrong.
My obsession with journaling was paying off. As I journaled, I began to realize that Luke was losing and gaining language. And then Jake, his younger sibling, began talking and was soon surpassing Luke’s speech. At this point, I knew I had to do something constructive to help out Luke.
I began reading everything I could get a hold of that dealt with autism. Too often what I was reading hit too close to home and reinforced the doctor’s diagnosis. I spent a lot of time crying. I became depressed. Keeping the journal was something constructive I could focus on. And because I am not a very patient person and because the changes in Luke’s behavior were often gradual, keeping the journal allowed me to look back and see that he had indeed made improvements.
I was afraid that maybe his diet was giving him headaches or somehow preventing him from developing his language. I wanted to be sure he had every opportunity to be successful. The doctors and the therapists aren’t going to argue for a change of diet because controlling diet is not a money maker for them. They were pushing the different therapies: speech and occupational. Yes, the therapies are beneficial, but I firmly believe that the diet was necessary. After all, how can Luke be receptive to learning, if he doesn’t feel well?
While the docs and therapists might not be getting rich from a selective diet, the natural food stores surely were. Because I had quit my job to devote myself to raising our two boys, we were at half of our income, and I was implementing a diet that was terribly expensive. A single loaf of specialized bread cost around $6; a half-gallon of ice cream was close to $8. Not only did I change Luke’s diet, but I also added supplements and probiotics. Again, not cheap. Luckily, my mother was willing to help us out with purchasing his special diet.
I wrote down every morsel of food, every sip of a beverage that passed his lips. At the same time, I kept track of any milestones or any significant setbacks he was experiencing with the new diet. Often, he would experience withdrawal symptoms when certain foods were removed. He had been very selective about his diet. He would only eat graham crackers, apples, chicken nuggets, peanut butter and jelly, orange juice, and 2% milk. But when I replaced those items, that’s when I noticed the withdrawal symptoms. The calm, quiet child became a Tasmanian devil. These trigger items usually contained gluten. “Must be gluten free” became my new mantra as I furiously journaled each and every day.
The process of changing his diet was a gradual one. I had to remove foods one at a time and then add changes. For example, after the 2% milk was removed, I waited a little while and then introduced rice milk. And of course, I kept meticulous track of the changes in diet and his behaviors. I have three years’ worth of the food/behavior journals. Someday I hope to find the time to type out the journals to keep as a record of this time.
All the time I was controlling Luke’s diet, I was feeding our younger son regular foods. While the food/activity journal validated Luke’s need for a specialized diet, I decided to stop the diet when Luke was entering school; when I knew for certain that he could communicate sufficiently with others. I wanted him to be able to blend in with his peers.
The journaling paid off, as did the constant help from therapists, teachers, friends, and family. We began to see some improvements. We’ve come a long way from wishing he could just verbalize what he wants to listening to him belt out all the words to a Maroon 5 song. . .from wondering how to get him to hold the pencil correctly to finding his name on the wall and engraved into the furniture. . .his brother got the blame for that!
And while a combination of therapies and a change of diet helped Luke find his language, I firmly believe that Jake, his younger brother and scapegoat, now is his best therapy.
As told to Cheryl Williamson by Becca Tyler.
Cheryl Williamson is in her 31st year of teaching high school French and English and still enjoying it! The chance to interview parents of an autistic child and writing about it has helped her gain some insight into some of her own students.
If you connected with Becca’s story, you can contact her at firstname.lastname@example.org.
This story originally appeared in Facing Autism in Muncie, Indiana, a publication of The Facing Project that was organized by Interlock in Muncie, Indiana.