Tuesday, May 19, 2009

Shot through the heart and you're to blame, Baby...

I do not claim to be an expert. I am just an interested party, and as such, I have an opinion. I have spent countless hours researching autism and my own illness. I have read umpteen books and blogs, newsletters and magazines and scientific journals. I have gone to meetings and conventions. I have taken my son to no less than 9 medical practitioners. Because I am an interested party I have tried to do my research so that I can have an opinion, but it is still just my opinion. On this journey I have traveled I have reached many conclusions, but none of them are or will be my final destination. As a parent I must remain vigilant in the search for a healthy, safe life for my child, and as my child's caretaker and last line of defense, good health for myself.

It is almost impossible to stay on top of all the current research being presented by the scientific community and parental think tanks. Many times just reading the opinions of the research, hypothesis' and stories of participants conjures up so much emotion -anger and tears, and old fashion fact checking that it can only be tackled in small increments. To really know and understand autism you must have a rudimentary understanding of science and biochemistry or at least the ability to develop one. Sound insurmountable? Thousands of parents are having to buckle down and be researchers and detectives to fill the gap created by misunderstanding, misinformation, politics and hubris that is the medical community and government.

Did you know that the Giant Panda was unknown to the Western world until 1869? Did you know that blood groups were not discovered until 1901? Some doctors experimented with transfusing blood, but up until 1901 they didn't know why it worked sometimes and not others. Is it unthinkable that there might be some things that we just don't understand yet in 2009? Should we not question and investigate? Is it not possible that maybe we should push the boundaries of what scientific investigation entails? When the accepted tests fail should we not try the therapeutic trial? Because it works for you does that mean it will work for me? Should we buy in to the herd immunity argument? Should we believe everything about vaccines are safe? Even if the actual vaccine itself is safe what about the preservatives and additives? What about the timing of giving vaccines before a child's immune system can adequately respond? What about giving multiple vaccines at the same time? What about the recombinant DNA vaccine which is a product of genetic engineering? Why do we have a vaccine court if vaccines are safe? Do you see what I'm getting at here? We have to ask the right questions.

Oh, I'd love to point the finger at the government. I'd love to have someone to blame. That big freak show we call the CDC is in this up to it's neck, but kicking their ass isn't going to save mine. I'm tired of the who knew what when and the secret meetings. Look at Nancy Pelosi right now. That's right, look at her then you won't be looking at the people who actually did the torturing. The CDC meeting at Simpsonwood in 2000 proves that proof of danger from vaccines was revealed at the conference and then hushed up by government and private industry. But by focusing on the who knew what when and trying to take a fight, this fight, any fight to Capitol Hill we're not seeing the actual grass roots people, scientists and parents, who have the good research to bring recovery to this autism epidemic. Don't worry, Karma is definitely going to be kicking some asses.

Do I think vaccines cause autism? No. Do I think they trigger it? Yes. Do I think that the benefits outweigh the risks? No. Is it black and white? No. Are these the right questions? No.

Today I took my son to a birthday party. One of his friend's older siblings was there. I introduced myself to this tween as Monkey's mother. He says, "Oh. Now I see where he gets it." "Get's what?" I'm almost afraid to ask. "The craziness." Well, sh*t. "What are you talking about?" He says, "I've never met a grown up who was wearing a Ghostbusters t-shirt." So, even though this looks on the surface as a complete faux pas by the teenage fashion police I know he just called my son and me crazy. High strung, funky free-spirited fashion plates that we are I couldn't help but get my feelings a little hurt. I know he didn't mean any harm, and really, I don't want to be seen as typical. Even though that lots of people may not know that Monkey was diagnosed as having autism and has since lost his diagnosis I still fear they'll be able to tell that something is amiss. And sure enough a 12 year old boy may have noticed. At least I feel a little vindicated that I am right to remain vigilant and continue with the B-12 therapy and sensory therapy and detox protocol. I know the rest of the 6 year olds are just as wacky as he is, but I will always be wondering if his behavior is weird in a good way or just weird. I'm okay with not being normal as my wardrobe would indicate, but I'm not okay with my kid falling through the cracks. As far as I'm concerned, normal is for people who didn't reach their full potential. We're shooting for the stars, my Monkey and me. Good health will give us the ability to do nearly anything we can conceive. Our health is priceless...although it seems to cost a whole hell of alot.

There are tons of wonderful mommy blogs out there about autism and lots that just compile all the info for your perusal. I can only tell you how we got Monkey from there to here. I can tell you how blessed we are. I can tell you what to read and who to talk to. I can tell you who to go tell cram it. And I don't give anything when they ask for donations at the cash registers for autism research. I always just say that I gave 2 lives already and we're doing our own research, you're welcome very much. It's going to be up to you if you choose to roll the dice or not. You need to remember what you are gambling with.

Just tell me what you need to know and I can point you in the right direction. I just talked to a friend today with a 13 year old with autism who was undiagnosed until 2 years ago. Guess what! She lived in Connecticut before he was born and she contracted Lyme there about 6 months before she had him. Hmmmmm. We've got to ask the right questions...by just talking to each other. So, talk to me, Goose...

We ain't 'fraid of no ghosts!

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