ChARM and Ear Infections

Those are actually two separate topics, but it looks interesting put together, doesn't it?

So, Monster has an ear infection. Doc had a very tough time finding anything, but he did see some puss in Monster's ear (ewwwww). Last night Monster had a major, screaming-meamy fit (Sorry you had to listen to that, Jim). I guess the little dude's ear was really hurting. By the time we got some tylenol down his throat, he litteraly fell asleep mid-wail. Luckily, he slept very soundly all night. He was very protective about his ear and didn't want the doctor to come near him. I don't know if the fill in pediatrician was just really cool or if he was trained to deal with autistic children, but he pretty much did everything right, which isn't that common for mainstream practices. Perhaps it is the incidence rate in the bay area, perhaps it was because he was a young doctor (heck, I didn't think he was old enough to be out of high school-when did I get so freaking old?), but he asked if he could touch Monster's head, was fast and got away from Monster as soon as possible in a nice way.

Something else intereting was he actually gave us the option to use anti-biotics or not. we have the Rx for it, but he said anti-biotics would only reduce the illness by about 1 day and suggested that since Monster wasn't presenting a fever or other symptoms (just the pain in the ear) that we waig until Wed/Thursday before trying anti-biotics. Since we've been working on the bio-med treatment stuff for Monster's autism, I was very pleased with how he explained the whole matter to us and let us make the final decision. We have chosen to wait to see how things go; regardless if one believes/doesn't believe in the effect of candida overgrowth on people with autism, anti-biotics can mess with one's stomach and I don't relish dealing with a puking/runny monster who also has pain in his ear. We aren't going to torture the poor baby, but if he can kick this without it severely impacting his life (meaning it doesn't really get that much worse) without anti-biotics, we feel it is worth a try. Trick is gettting Monster to take the tylenol/ibuprofin enough to keep the pain under control. So far, so good. Dyes are going to take their usual toll on his behavior, but in our experience, that's easier to deal with than the tummy problems that result for anti-biotics (not to mention Mr. is allergric and as the person who will be giving Monster the meds, the one most likely to be spit up on if Monster is being onery).

Now onto the ChARM portion of the title. Someone posted about an online tool to track bio-med treatments on one of the yahoo groups to which I belong. I have the paper products (composition book, spiral notebook, etc) to keep track of stuff, but I admit, I'm more comfortable having things stored online somewhere where I can't lose it. I've registered there (http://www.charmtracker.com) but haven't started using it. It seems to me, from their website, that someone will be looking at the data the families put in. That's cool with me. Maybe someone can actually get a good handle on this aspect of autism.

I realize that some people think that this aspect of autism is nothing more than schmarmy con-persons taking advantage of desperate people. I'm sure there are those out there. However, to me, I know enough people (in real life, not just on the internet) who have seen some success. Our children are still autistic, but the autism seems to ease off a bit, or perhaps it's more appropriate to say the symptoms are lessoned. As a scientist (or at least a former one in that galaxy far, far, away) I want to do controled experimentation where I can test my hypotheses from different perspectives and compare them to a control group. That's not going to happen. So we do the best we can.

And this leads me to one of my biggest dilemnas and pet peeves. "Curing" autism. You see, to me, autism isn't like cancer, a disease that needs to be erradicated. To me, autism is a description of symptoms/behaviors. When one reads about autism and what it means, you can read about "concrete thinkers", "single minded focus", "near perfect memory (in preferred areas)" in addition to missed social cues and difficulty speaking. So what does "curing" autism really mean? I, personally, don't want to "cure" Monster's autism, I want to eliminate those aspects that separate him from the world-the sensory integration issues that make this world a continual assault on his senses, to reduce his anxiety in delaing with a place that moves too fast, is too bright/loud, to help him communicate his feelings/needs/thoughts. I don't want to change those thoughts. Maybe I would feel differently if my child was higher functioning or had asperger's syndrome.

So what is a "cure"? To me, a "cure" is something that is going allow his physical system to function appropriately-his mouth can form the words it needs to speak, his hands should be able to touch slimy things, his ears should be able to hear the words of others through the static, his eyes are not distracted by background. I don't want to change his sense of humor, his charming smile, his joy while swinging and flipping upside.

It is heartening that so many people are getting on board with autism-meaning they are researching, talking and asking about it. But as with any "Cause celeb" the picture being painted is fairly 1-dimensional. Autism is an epidemic and we need to find a cure. The reality of autism is actually 5 or more dimensions (if that is possible). Yes, these kids have serious challenges (sensory integration, communication, attention) but they have incredible talents. It seems like their biggest "symptom" is not being able to fit into a pre-determined, one-size-fits-all social-education system. They don't color within the lines. so to speak. I wonder if that's their biggest problems, that they don't fit in.

I am curious, for those who read this blog (if any), what do you see as a "cure" for autism? All opinions are welcome. It takes a whole hell of a lot to piss me off and even more to actually offend me. I may be an arrogant, conceited bitch sometimes, but I do admit that my opinons are not the final say in anything (just don't tell Mr, ok?).

What is a "cure"?

Monster at gymnastics