It was June 2005, when my son Debashish was formally diagnosed as having severe Autism, at Hinduja Hospital, Mumbai. Dr. Udani, a renowned Pediatric Neurologist in India, was the one who did the diagnosis, based on the reports given by the Child Development centre, at the hospital. He recommended several conventional therapies, some basic supplements and GFCF diet.
At this time, Debashish was extremely hyperactive, had severe sleep issues and was absolutely mute. The only sounds that came out of his mouth was high pitched squealing. Just to mention that he was not always mute, before that. He was a typically developing kid till 18 months of age and then he started regressing. Lost all his speech by 3 years of age and sensory and behavioral issues set in.
We had very limited autism resources in Vadodara, where we were based at that time. Hence I had to visit the therapists in Mumbai, learn the techniques from them and apply on my kid. I was doing all this and hoping that we could move to a better place where we could have better resources. In the meantime, I also started the recommended supplements and GFCF diet.
As we come from eastern and north of India, it was a real challenge to follow the diet, as we had to remove wheat and milk completely from the kid’s diet. But I wanted to do everything that was recommended, so that there were no stones unturned. So the decision was taken and work started!! It was easy to remove milk as my kid had taken to drinking Soy milk. I took one step at a time and slowly removed all casein from his diet by the end of 3 months, replacing each milk product with Soy products. I did not see any change in his behavior by removing all casein, but his bowels were more regular and better formed now. Now this SOY stuff is a little tricky!! It seems that most of the soy produced in the world today is GMO. But didn’t know about that then, so I kept feeding him soy instead of milk. It was much later that I came to know about Almond milk and coconut milk, which I now use for my kid, home made of course, as the store bought ones have many additives.
Simultaneously I had also started removing the Sugar laden wheat products, like biscuits, cakes, cookies, etc, as I had read about sugar contributing to worsening of symptoms, my kid already had. I kept jaggery though as a replacement, whenever I made kheer, halwa etc. Little did I know that jaggery too had equally bad effect!!
After casein was completely removed, I started aggressively on Gluten. Rotis were easily replaced with rice and Poha/Chivda, Sooji/rava was replaced with rice rava for making upma and halwa. Birthdays were celebrated in traditonal Bengali style only, so that we could feed him Payesh or Kheer and there would be no need for cake.
Gluten was completely removed from his diet by the end of another 6 months, and by then my kid had started sleeping well, was less hyperactive and had started imitating a few words, which was HUGE! So Gluten it is!! It has been a big thing for us to have removed gluten from his diet. From imitation, he moved to talking spontaneously using single words and small phrases and my kid was now VERBAL. That had not happened overnight or just due to the diet though. It has been a rigorous work using ABA too. But yes, first words came with gluten removal.
This is how it continued till he turned 6, but just after that he started demanding for the regular items we used to have. If denied, he would just grab (rather try to grab). We started getting these complaints from school too and there was pressure on me to discontinue the diet, so that the kid’s behavior is good at school. How could I do that? I kept fighting for the cause and just did not budge. This eventually led to my experiments in the diet and I can proudly say that the results are quite close to the real dishes, if not the same!! My kid is now satisfied and his grabbing behavior is gone, as he knows there are goodies for him too, which taste yummm…!
I will be giving my recipes in my subsequent posts and hope that others will find them useful. Presently I am following Gluten free, Casein free, Sugar free, Soy and Corn (as both are mostly GMO) free diet for my kid. I have also tried grain free for some time and found that it had really helped in his yeasty behavior, like stimming, giggling, etc. I will be sharing my grain free meal plans and giving those recipes too. I wanted to write all this down as I see few Indian menus and recipes, when I search GFCF and grain free diets on the net, and hence can understand the reluctance by most parents to follow the diet.
Following this path is not easy but its definitely worth it. You will feel its worth when you see that difference in your kid!! So, go for it warrior moms!!!