People who know my 10 y.o. now have a very hard time picturing him nonverbal, but he was. He met all his developmental milestones, definitely on the tail end of most of them, but in a timely manner. That was until he was treated for a dog bite with I.V. antibiotics and then received his MMR 2 weeks later. He was about 15 months at the time. His language acquisition ceased to progress after that and he actually started losing language. He was our first child and the first grandchild on both sides. We had no point of reference for neurotypical progress and were ushered in and out of doctors appointments at the speed of light.
I would ask questions about his diarrhea and be told that that was just toddler's stool "a little wet, but just fine". Mind you, no professional ever looked at it or ever took a sample. I would ask about his red cheeks and be given a myriad of answers ranging from "he has a sunny disposition" to "he has your complexion" to "it is sunny/rainy/windy/hot/cold outside" all given to me in a completely dismissive tone. Until one day a doctor at a walk in clinic basically called me a 'village idiot', and said to me and my husband " This child clearly has Autism. What's wrong with you that you don't know that?" I suppose what was wrong with me was that I forgot to go to medical school after I discovered that I just didn't like biology. This doctor had a horrible bedside manner, and seemed almost giddy to be delivering this life altering news to us in a completely superior manner. His best suggestion was to get our son on a list for a group home and get myself a good psychiatrist.
The next morning I made several appointments. The Neurologist would see us in 2 months. The Audiologist could see us in 3 weeks. One Speech Pathologist could see us the next day, the best in the area could see us in 3 weeks at the soonest, I booked all the appointments. I was trying to remain calm and my husband rationalized that the doctor was not a specialist, and clearly a jackass (my word, not his). It would be stupid to just take his word for it.
A week later we had an answer. A formal evaluation from a speech pathologist gave a diagnosis of moderate autism. His recommendations were hardly any different than that of the clinic doctor. I initiated birth to three services at that point.
My mental breakdown started later that night. A deep, deep sense of despair filled me. The memory of my mother's voice filled my head, "Don't have children. It will ruin your life!" A reminder throughout my life how much she did and didn't love me, even after she departed this world. Clearly, very clearly, this was all my fault! I wasn't able to go more than twenty minutes without crying. I don't mean a couple tears down my cheek. I mean uncontrollable sobbing, chest heaving, crumpled on the floor, our lives as we knew them are over crying. Three days went by like that. Cradling my child in my arms whenever I could sobbing "I love you" whilst he desperately struggled to get out of my grasp. My poor husband had no idea what to do. I had always been so strong no matter what horrible thing was happening. I remember hearing him on the phone, quietly talking to his mother in the other room, saying,"I don't know what to do...". I knew she was saying to him that I'd cope, I always had before. Almost a whisper, "Not this time! It's different."
In hindsight, he was right. The very fact that it was a this time circumstance made all the difference. I was in my thirties. I didn't have an easy run up to my thirties. I was raised by an undiagnosed manic depressive mother and a workaholic. Adding to that my mother was chronically and eventually terminally ill and as I grew older I had greater responsibilities in taking care of myself, my sister, my mother and the household at times. My relationship with my mother had become horribly enmeshed which made relationships with others incredibly difficult and then when she died I suffered from PTSD (Post Traumatic Stress Disorder) and a chronic depression.
Now, I had a child with Autism, too. The only consolation the professionals could give me was that there was nothing that could be done about. So get over it! This was the straw that broke the proverbial camel's back.
The third day was my turnaround. At some point during the day, I was on my knees praying. Begging. Desperately beckoning to God to show me the path out of the madness. There on my knees, praying, I had a moment of clarity. I realized how ridiculous it was to believe that this is what God wanted for me, or for our family or my beloved little boy. I thought in my head "I know this isn't what you want for us, just show me what to do." Suddenly the phone was ringing. I answered it. It was Sally Brockett the chapter head of the Autism Society of Connecticut. I had left a message earlier in the week. We spoke for a good 45 minutes. It wouldn't have taken so long if I hadn't broken down in tears quite so many times. I had the feeling she dealt with that a lot. She handled it well. She couldn't give me any professional advice without seeing my child, but I was relentless in begging her to give me an idea of what I could do myself. She finally mentioned a website that might help me, http://www.gfcfdiet.com/ . I have recommended, and used this website so much over the years. That night, and that website was the turning of the tide for our family.
After my son was in bed for the night I hit the Internet. I was very sceptical when I read the information. How in the world could taking wheat and dairy out of a child's diet possibly make autism go away. This was crazy! I decided to read the testimonials. I was still very sceptical. About the 15th testimonial down was a mother, who had heard about the diet a year prior. She wrote that her biggest "regret" was that she hadn't done the diet when she first read about it. It seems the diet had been nearly miraculous with her child.
Regret. I rarely experience regret. I wish I did. Instead, I end up emotionally "beating" myself up. Over and over and over again. I still hear my mother's wicked ramblings in my head. Could I afford to add my own voice to the cacophony in my own head? Wasn't I on my knees praying for a path when the phone rang? Wasn't this a path? Wouldn't it be blasphemy to ignore a course I was steered to while literally on my knees praying? Yes. At the very least, I was obligated to give this a try. My husband, so delighted to see me not crying, gave me his blessing to go buy whatever we needed from the health food store. I did, in plenty. And so began our foray into dietary intervention.
At the time, http://www.gfcfdiet.com/ had links to Defeat Autism Now! (DAN!) doctors and nutritionists. That was how we originally found our doctor http://www.drohara.com/ Dr. Nancy O'Hara and our dietitian Vicki Kobliner M.S., R.D. http://www.holcarenutrition.com/ both first rate assets in our life journey. I've noticed lately they no longer link to DAN! practitioners but the Autism Research Institute at http://www.autism.com/ does. I can't stress enough how important, how very crucial a role both practitioners have played in bringing my son back into his true self.
Ours was a textbook success. Within 3 days our son began talking again. When we started the diet he had a vocabulary of five words, and not all of them held meaning for him. Six weeks later he had a vocabulary of over 200 words and they all held meaning.
Next week, hear about the early days. The easy mistakes. And why GF/CF just isn't enough sometimes!