The "day one" miracle

At the time of my son's diagnosis he was 5 1/2 years old. At first I resisted the doctor's suggestion that any dietary change could help my son's anxiety, after all, I have been raised to believe my whole life that milk and wheat are good for you. How could this be possible?

Well, on Christmas day 2008 we had a particularly anguishing 7 hour drive from Saskatchewan to Alberta to visit family. We had let each of the kids pick out a drink at a gas station and my son's choice was a bottle of chocolate milk. I didn't make the connection at the time, but during that trip, he was so anxious and wired he was begging to stop the trip, begging to get out of the vehicle and crying out "I can't take it anymore" over and over, although we were constantly trying to appease and calm him, divert his thoughts with singing, movies, books and different activities. He was inconsolable.

At the end of that day, two weeks after the initial diagnosis, we finally decided we were desperate enough to try removing milk for a few days to see what would happen.

Well, what happened was a miracle. Literally overnight, the next day, there were drastic changes in my son. He was calm and happy, did not require constant consoling, and the biggest miracle of all was that he played happily and quietly (on his own!) with some little plastic animals at his grandparent's house, creatively pretending they were talking to each other and coming up with stories on his own. He did not pace at all.

My eyes were opened. Milk was the trigger for my son's anxiety.

How it all began

Well, I didn't know it at the time, but my journey began almost 7 years ago, when my second child was born, a son. At first we marvelled at what an easy baby he was, so content to lay and look at whatever toy was placed above him. We giggled at how early he started raising one eyebrow in response to a little coo or smile from his sister, at 7 weeks. His only difficulty was latching when nursing, he would always turn his head at the last moment, a trait which later continued when we started feeding solid foods by spoon! Low weight gain and then mastitis led to starting the bottle at about 2 months old.

I can't say that I noticed a sudden change, but over time things did change. It's hard to explain, but by the time he was 10 months old, my son developed severely anxious reactions to things. My doctor laughed at me and said they were just tantrums, but to me they didn't seem like tantrums. A tantrum, I thought, should stem from understanding and then active will or anger, but he didn't seem to understand the simplest things. If I handed him a bottle and it didn't "feel" full, he seemed to think it was empty and he would refuse to even try to drink. If something fell, even within reach, it was so upsetting for him, he wouldn't even try to pick it up. Coming to the end of his bottle or sippy cup was a major melt down each and every time it happened.

The endless daily examples of this strange anxious lack of understanding turned into months and years of appeasing, trying to explain, that everything was fine, that each little thing is not a big deal, to relax. We were in constant crisis management mode.

At the same time, although his speech was developing quite normally, and showed normal intelligence, my son had absolutely no desire to engage in creative play, and hated to play outside. This was very hard on his older sister, who wanted to play outside! He screamed endlessly in parks, and swimming pools, gymnasiums, community halls, churches, anywhere with an echo was even worse.

My son showed few physical signs that anything was wrong. Besides affectionately referring to the little "deer turds" in his his diaper, and spiking an occasional brief unexplained fever, his health seemed excellent. When he finally started walking at 17 months, we joked at first that he never stopped... he paced almost obsessively every chance he got, and it became a full time job to divert him from pacing. This was a challenge, as he was so difficult to engage in creative play. He loves tv and computer games however, and will sit and do them for hours, as long as he is permitted.

Occupational therapy at 5 alleviated some of his praxial motion fears, but his anxiety was always hindering him. Finally, just over a year ago, in December 2008 he was assessed and diagnosed PDD-NOS, a mild form of autism, and our diagnosing doctor suggested that eliminating milk and wheat products really helped some children. This was the beginning of a long journey of discovery, that is still going on today. And so begins my story!