A Small Setback...But Back On Track!
Toward the end of November, as I literally prepared the final touches for this book, I noticed Zachary had a few behaviors again that previously had almost completely gone. These included a little more spinning of truck wheels than had been “usual”. He was down to spinning for only ten or twenty seconds, and now, thirty seconds to a few minutes of spinning occurred. He plucked plastic flowers off the Christmas tree and pulled the “flower” off the stem again, he wanted the lights off (that one was one of the more pronounced things to “come back”). He was a little more sensitive to certain noises again, the sensitivity to food textures had come back (he began to spit bananas out again unless cut in small pieces) and he now refused to eat his rice spaghetti noodles. These behaviors troubled me. I had even seen him do his “finger face spinning” once or twice. Again, most of these behaviors were by no means “severe” again, and in most cases, it had taken me quite a while to even notice they had intensified somewhat...but they had and it was just noticeable “enough”.
I thought and thought...what had been different – nothing it seemed...at least not in the last two or three months. But, upon thinking further, it hit me. In the past, I had given Zachary rice noodles with sea salt, organic black pepper and a little safflower oil spread. But, then, I decided to “test” giving him a teaspoon or two of spaghetti sauce mixed in with his noodles. I had given him rice spaghetti perhaps two or three times a week in the last three months – a food he absolutely loved – that in itself should have tipped me off to the fact that there was something wrong. But, I had let my guard down...I had not seen a “reaction” when I first gave him the “sauce” back in September. It had taken three months for some of these behaviors to “come back” though only mildly – but still, there was a change that was now “noticeable”.
I could stop the unwanted behaviors simply enough with a distraction but, regardless, it bothered me tremendously – they were after all a step backwards. The spaghetti sauce had to be the culprit. It contained “spices” that must have contained gluten – it was either that or the slow accumulation of phenols from the tomatoes. It was one of the two – I just knew it. The next time I tried to give Zachary rice noodles, with only sea salt, organic black pepper and nothing else, as I had done in the past, he went to the refrigerator and said, “jar”, meaning he wanted his teaspoon of “sauce”. When I refused to put it on there, he refused to eat it. That was as good a confirmation as I needed – absolutely no more sauce for him – not even three to five teaspoons a week. I had let my guard down. Not seeing an impact right away, I thought the reintroduction of this food had gone well, but I was obviously wrong.
Zachary could still not tolerate even a small amount of gluten or tomatoes. The ingredients in the sauce were listed as follows: tomato puree (water, tomato paste), diced tomatoes, corn syrup, beef vegetable oil (contains one or more of the following: corn, cottonseed, canola), salt, spices (oregano, basil, and other spices), onion powder, dehydrated garlic, citric acid, dehydrated parsley, spice extract. I included this listing in the hopes of further helping scientists who may find value in this book as one of my primary reasons for writing it was also to provide data to further the scientific study of autism. I had been very strict with Zachary’s diet, and yet, he was obviously still impacted by even minute amounts of “bad foods” even after eighteen months. That was ok, I would simply get back on track.
I had hoped Zachary’s gut had been healed enough to start introducing such products, but obviously not. It certainly would have been nice to end my book without this chapter, however, Zachary’s “small reversal” had been sent to me as a reminder not to let my guard down. I saw how it could literally take months to see the impact of even just a little “bad food” for Zachary. As such, I had to include his minor “setback” also. I felt like a fool for having broken his diet with this one product, but throughout all of this, I had always battled with the question of “when” to try “regular foods” again. Bananas and apples he now tolerated a little, but processed foods were obviously still going to have to be “out”.
The following week, I tried making “my own” spaghetti sauce for Zachary. I simply took five or six organically grown tomatoes, boiled them in water until cooked, put them in a blender (after removing the outer peels), strained them to remove all the “seeds” and then gave Zachary bout five teaspoons on his rice noodles. It was very “liquidy”...much less potent than anything he would have had from a store bought brand. I added a little sea salt and organic black pepper. Zachary started to eat the noodles, then he stopped (actually a good sign in my book). I then picked up the bowl and fed him a spoon at a time. He ate pretty well all of it. That night, I found him a little more restless than usual – he banged his legs again to “get rid of the extra energy” and settle down for the night but other than that, he seemed ok. The jury was still out on “tomato tolerance” (tomatoes were high in phenols). I needed more “observations” to come to any definite “in” or “out” conclusions. I would give it two or three weeks.
I knew we could quickly get back on track and minimize negative behaviors again if they really surfaced...at least I knew for sure there was no gluten there and so any adverse reaction would have to be due to the tomatoes. I looked at it as a part of the learning process. It certainly did not take away from the fact that Zachary had made huge progress in the last year and a half – and that was much more noticeable to everyone who knew him than this small setback.
I guess it was better for me to find out now and include it in my book than to have perhaps several hundred parents with children on casein and gluten free diets make the same mistake. There was a blessing in everything – perhaps that was it! Within a few days, I noticed Zachary’s behaviors (from the store bought sauce) were subsiding again, and that was good. The bottom line was...I still very much had my son back!
Like everything, each day still had its struggles. Would I say Zachary was 100% cured? Absolutely not! But I knew that he has come a very long way in eighteen months and that he was well on his way to a normal life. I had my son back, a little boy who laughed and played, pretended and learned, and continued to amaze me each and every day...a little boy who now returned my precious butterfly kisses of so long ago. He was my “best boy”, as I always told him as I blasted him with kisses. I figured he was probably around the age of two and a half socially but more near the age of six in cognitive functioning, and that averaged to right around four, exactly where he should be. I knew that was a different way of looking at things, but the last eighteen months had been anything but “usual” or “ordinary”. I knew the social skills would only get better with time. I was happy with having a son I knew could later function well in this world...and that meant Anika would have a better life also...knowing my children both benefited from Zachary’s difficult gluten and casein free diet and the low phenols as well - that in itself had been worth this tremendous effort. I knew Zachary was not perfect and he may never be completely “recovered”, but that was ok because as my mother used to say, “perfection is not of this world”.