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Thursday, April 14, 2011

Eat That, Not This

Boy, the early days after our older son's diagnosis were tough.

There is a lot of information "out there" concerning autism--medical, biomedical (which the medical community calls 'antectdotal'), theoretical. As a frantic parent of a newly-diagnosed child, I just wanted answers. Why did he always cry? Why did I get no reaction from him? Why does nothing I do work?

Why does he have bowel movements running down his legs several times a day?

A few days after learning her grandson hat autism, my mother called me. As soon as our son was diagnosed, she and my father had purchased some books on-line about autism. One book in particular depicted a child diagnosed with autism and an astute mom who noticed that her son's symptoms of autism disappeared with the elimination of dairy from the child's diet.

"You have to get this book," my mom said. "This is him completely." Her voice sounded hopeful. I needed hope. I went to the bookstore that night.

It is a wonderful book. I believe her story. Looking back now, seven years later, I understand that the profile of her child just wasn't the profile of mine. A special diet did not take away our son's autism. But I needed the hope. I needed the sense of control.

I was going to cure him.

I had tremendous family support at that time. My aunt had lived the life of a restricted diet with her daughter even before the luxury of the Internet. My sister-in-law has Celiac's Disease. My sister is a special educator and believer in natural medicine. Without this support, I don't think I could have jumped in the way I did.

I read that book, and two days later, I eliminated all gluten, casein ( the milk protein), soy and corn from our son's diet. At the start, we made a lot of mistakes. We purchased a lot of food that contained offending items. But, we found our way. And we saw differences in him. There was a clarity that had not been there before. He was doing things that he hadn't been able to do before, and, again, I found hope. Give him a couple years, I thought. He's going to pull out of this!

We jumped into treating our son biomedically with both feet. Defeat Autism Now! (DAN!) is a movement within the autism community that details "triggers" for autism that have compromised the health of our children. There are DAN! doctors who have dedicated their practices to healing the harmed gastrointestinal and immune systems of children with autism as well as a whole host of other things to improve brain function and wellness.

I had a refrigerator filled with compounded vitamins and supplements, which I combined in various ways in little doses to administer throughout the day. I had powders, drops, tablets and capsules of more things than I can remember. We traveled to several different states to bring him the best care possible. By darn it, we were going to save this kid!

Above all else, the diet. Oh, that diet. I kept a log. I wrote down every morsel that child ate and tracked his behaviors. Yes, I even monitored his bowel movements. What color were they? Consistency? Do they smell? If so, what kind of smell was it? There are even web sites "out there" dedicated to analyzing your child's poop.

I was a pro. I watched that kid's digestive system like a hawk because, surely this was causing his autism! I followed theories of salicylate intake, which monitors a person's sensitivity to a chemical found in fruits and vegetables. By my investigation, he could NOT have pigmented food. He could have a Golden Delicious apple but not a Red Delicious. Pears--but only Bartlett pears-- were the best to eat of all. And, by all means, do not give the kid grapes of any kind! When he ate grapes, he must surely be feeding the yeast in his gut because the amount stimming that happened afterward was stunning!

Yes, it is over-the-top, and I'm not even disclosing everything we thought and tried. Furthermore, I guarantee that I am not the only mother to autism that has done this. It is an awesome burden to place on a parent by telling her she had the power to heal her child's autism. What parent would not dedicate her entire being to make this happen?

I can't say exactly when I pulled back on our efforts. Over the years, our son has had several gastric scopes, and we learned that he has Celiac's Disease, which greatly explains why we saw such a drastic reaction when he ate foods containing gluten. He also has acid reflux, gastritis and colitis. And, he does have multiple food intolerances. I believe that understanding his tangible medical issues helped me to cope with the intangible We don't know for sure what causes it, and that's a difficult notion for parents to autism.

We have a fantastic GI doctor in Boston. Once our son came within his care, I exhaled. I had spent years and LOTS of money trying to wipe autism from our lives. I had gone over the edge. It was time to stop treating this child as a condition and start treating him as a son.

If there is a magic needle in the haystack that had the power to "fix" our son, I did not find it. And, while living with autism can be very, very difficult, I'm not so sure that I could ever look at any child and call him "broken."

2 comments:

  1. "I'm not so sure that I could ever look at any child and call him "broken.""

    That ending came straight at me out of nowhere and made me cry with recognition of that feeling, not just as my own but other mums I'm close to here, dealing with their own stuff. Sending you warmth, strength and friendship, always x

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  2. There is simply nothing more to add to that, a. Wonderfully said. xo

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