I have tried to write this particular path down multiple times.....we'll see how well I do this time.
The twins were diagnosed with PDD-NOS in October 2002. Tod got on a plane the next morning and went to Kuwait/Iraq for the ramp-up of what would become OIF. He was gone for 9 months. I'll delve into how that saved our marriage in another post.
I was in Germany, with little support. But, mostly because of who I am, I practically demanded that a support group start. I'm most profoundly grateful to Ms Lisa and Ms Judy, the teachers at the developmental preschool. They helped fill my need, as well as giving the twins a great start on the education process.
We came back to the states, Arizona specifically, after 16 months in Wiesbaden. Arizona is home for Tod and me, as well as the branch HQ for Tod. At the time, the state services for the DD community in Arizona were very easy to access. Finding providers in the southeastern portion of the state was, and continues to be, more problematic.
Again, the twins joined a fabulous preschool program and Ms Chris helped us all to thrive. I attended a local workshop presented by STOMP (Specialized Training of Military Parents) and connected with a few other families dealing with autism. Another couple went with Tod and myself to Tucson for an autism conference. We were inspired by that first conference with the imperative need for the information we received in Tucson to be in our local community. Between four families, we created and promoted a support group here in Sierra Vista. It was so awesome to be involved with other like-minded parents who were passionate in helping their child(ren).
As part of the leadership in this support group, we researched out other conferences that would be beneficial for us individually and for our community as a whole. We really stumbled upon the Autism One Conference, held in Chicago. Through our efforts, 6 members of our board of directors were able to attend this conference in 2005 with little or no cost to us as parents. We contacted the conference directly for a group rate; talked to the local school district and behavioral health service agency for funding, as well as numerous fund raising events.
Autism One was the first breakthrough for me. I had heard a lot about different therapies used in treating autism, but no one could tell me what caused it, so how could they treat it? I knew about the gluten-free, casein-free(GFCF) diet, but I didn't think it was that important. Besides, the food was really expensive and didn't taste very good. Well, the entire first morning at the conference was devoted to GFCF recipes and foods. *boring* Probably the only bit of information I took away from the morning was that a leaky gut allows large chain proteins to move through the wall of the intestines and into the blood stream. As these proteins travel to the brain, they are converted into glutomorphine and caseomorphine, and affect the brain the same way morphine would. That made me guilty, seeing as how I was helping my kids basically shoot up every time I fed them pizza or a bowl of cereal. I was going to skip the afternoon, which was talking about a different diet, but I was prompted to stay.
The afternoon had a presentation about the Specific Carbohydrate Diet (SCD). That made sense to me. The science behind the diet was explained as well as showing me a progression of recovery when following the diet. So I came home and we all went on the SCD.
At first, it was really awful. SCD is based on the premise that there is an overgrowth of bad yeast in the gut. This yeast demands fuel, most often in the form of complex carbohydrates. When the yeast does NOT get fed, it produces chemicals that create cravings. When it does get fuel, the by-products from the yeast causes problematic behaviors in and of itself. Most of the "brain fog" that people with autism experience is a result of the yeast getting fed. Uncontrollable laughter , staring off into space, are also behaviors attributed to a yeast overgrowth.
So my job was to kill the yeast. You can do that either with a pharmaceutical intervention, but most docs want to run lots of tests to verify yeast, or you can do what we did: starve it out. Starving it works, but as the process progresses, you experience yeast die off. This can, and in our case did, cause frothy yellow vomit and diarrhea. Multiply that by 4. It was loads of fun at our house for a few weeks. However, once the yeast was under control, we noticed a major break through for the twins: We had been working on potty training at school and home with the twins. They understood the concept, would urinate every time they were taken to the bathroom, but bowel movements happened in really inconvenient places, and often out in the yard, hanging from a limb of a tree. Well, once the brain fog disappeared, Sean and Spencer made it to the bathroom with few accidents and BMs happened in the toilet where they are supposed to.
Diet is extremely hard to control, especially when funds are limited and you are trying to feed an entire family on the SCD. I had good results personally. I lost thirty + pounds, lost my PMS, and was a much more calm person. It is amazing how food can affect our behavior, even for the typical ones. And gluten and casein are found in numerous products that you would never suspect, like shampoos, lotions, soaps, and detergents.
I was really happy with the progress the boys made once we adjusted their diet. It was like the light in their eyes was no longer seen through a filter; you could tell they were in there, just waiting for us to help them come out.
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