We survived fall break

Usually a few days out of school means a few extra days of chaos in our family. K. loves having time off, S. responds less than favorably to the lack of structure and schedule that seems to be inherent in our family/home life.

The boys had Friday, Monday, and today off, and so far...we're doing okay. There have been moments, certainly, but no 45 minute tantrums that leave me feeling wrung out and hopeless.

Today has me in a reflective mood...I think I'm finally coming to grips with how I REALLY feel about the whole "autism treatment" notion. When S. was initially diagnosed, we knew nothing about biomedical interventions. We focused on early behavioral intervention and I threw myself into it wholeheartedly. I'd like to think that my early efforts bore some fruit. It took two years for S. to grasp the pic sym concept, but that has certainly come in handy over the years - now that he's becoming more verbal we rely on pics less now. That's a good thing, in my opinion.

But, as most loving parents do, we keep looking for more, better, faster ways to "cure" our son. I put that in quotes not because I doubt that it can happen, but because I think it is a rare occurrence, and an outcome that we don't really expect. Not anymore. The first biomed-flavored book I read was Karen Seroussi's Unraveling the Mystery of Autism. I devoured it and immediately began thinking of how I would save my son and we could put all this nasty autism business behind us. We did the diet...and what a struggle that was. No gluten, no casein... We also visited the only DAN! doctor in our area, who agreed that removing these things from S.'s diet would help him. I went to health food stores, often spending $50 on ingredients to prepare ONE thing for S. - I don't begrudge the money, but the problem was: IT DIDN'T WORK. Not for S. He got worse. There was no dramatic improvement in behavior. He became listless. He got diarrhea. His hair stopped being shiny, and his face was pale. During this time we also had bloodwork and an EEG done, on the DAN! doctor's orders. THAT was fun. A couple of weeks later his nurse called to tell me (in what now seems a calculatedly gentle tone) that S. was having seizures. I panicked and cried, but she assured me that this was GOOD news. Seizures could be treated!

Suddenly, the emotional rollercoaster that would be my ride for the foreseeable future kicked into high gear. First the diet and it's promises failed us. But now? Now we could attribute S.'s behaviors to seizures, which could be treated, and we'd have our son back! I was overjoyed and couldn't wait to start him on the Lamictal. We started the drug per the doctor's orders and sat back to watch the magic.

Except...IT DIDN'T WORK.

We finally thought to seek a second opinion. We went to a pediatric neurologist who repeated the EEG, then told us that S. was NOT having seizures. The spiky activity on the readout, he said, would be alarming if the test results were from an adult. From a child whose brain, even though hampered by autism, was still developing, though - the activity was normal. He also noted that the dosage of Lamictal S. was taking was too small to have any real effect.

You might wonder why we didn't pursue some kind of action toward the DAN! doctor for what seemed like negligence or even outright deception. The neurologist told us that reading EEG's can be very subjective, and that while he felt that most of his colleagues would agree with him, a case could be made to defend the first doctor's assessments.

Another thing to note here: BIOMEDICAL TREATMENTS FOR AUTISM HAVE NOT BEEN PROVEN TO BE EFFECTIVE. There is lots of anecdotal evidence...enough for parents like us to run ourselves crazy trying to get the next test, the next supplement, the next treatment for our child. You never want to look back and wish you had tried something.

We've tried. We continue to try. We delved into the world of chelation as well. Let's talk about that another time, shall we?

For today, I rest in the knowledge that we have tried everything possible to help our son. Some of these things have helped. Some of them have done nothing. Some caused us huge amounts of stress and resulted in no change. Parents like us will continue to look for answers. The snake oil salesmen have perfect marks with us...we are desperate, tired, and close to despair. There are people out there offering hope in a bottle, or in a hyperbaric chamber, or in a special diet. I'm certainly glad there are children that have supposedly been helped.

I'd be lying if I didn't admit that I wish my child was one of them.