Tuesday, May 10, 2011

Really just need to rant a bit...

I am trying to collect my memories, I have trouble remembering sometimes and I want a record of our journey so I am writing it down here a bit. This isn't the whole story, it meanders around gets really crazy in places... but its a start.

My son is 14- diagnosed about 4 years ago. I don't honestly remember if his symptoms followed a vaccination event, he is my 4th child of five. I do remember the day he started banging his head, it seemed like he was doing it to get a laugh at first, he was irritated about spending too much time in the playpen because we were moving, he needed to be there to be safe while we moved furniture, etc. But it got worse and worse. When he was 9 months old on schedule like with my older girls I tried to get him to take a sippy cup and found the most wildly impossible task ever, he would have a bottle or die of starvation while screaming the house down as far as I could tell. I was flabbergasted, and astounded and at first I thought it was just that he was a boy maybe. I kept asking my ped about the head banging (Isn't this autism?) and she convinced me that since he knew he was banging his head it meant he was just doing it on purpose for attention. Even when it got so bad that from the age of 2 to 4 he lived in a bicycle helmet for safety because he would beat his forehead till he had huge blue goose eggs on his head and still wouldn't stop. We had to wait till he fell asleep to take it off, if we accidentally woke him up he would immediately bang his head. We had to wake up before him to put it on, if we missed it and he got up early or woke up at night he would bang his head.  When he started talking he was a little late but I never believed in pigeon-holing my kids to someone else's schedule- but he had his own language. How cute (right?) Most all his words started with BL (like Blue's Clues his favorite show) he drank bloo (juice) liked to visit bloomblaw (gramma) loved his oldest sister blouway (DeSere) and he couldn't say his next sisters name Jocelynn at all; so both she and the next sister Alex were... Alex. And his baby sister Moxi (Maxi) We thought it was funny, kid stuff, it was random didn't always have to follow the rule. However, he had a serious dark side, unexplainable tantrums screaming fits that lasted for ever, most plates of food offered to him went on the floor immediately, even when you gave him exactly what he wanted on the right color plate at precisely the moment he wanted it, he kept us all hostage. Maxine was the first one to realize he needed help I think, she was 13 months younger and she took care of him. Thats what kids in big families do they take care of each other.
When he was 2 I had started trying to figure out the riddle of his fathers frequent fits of rage, and drinking and apparent diagnosis of adult ADHD didn't help matters even they put him on Ritalin. After his psychotic break on Ritalin I started researching ADHD and found some doctors online who said it wasn't really a disease at all but symptoms of food allergies and I started cleaning out the cabinets, no dyes, no preservatives, food logs, discovered he and the kids all reacted heavily to Red dye #40 others as well but red dye seemed the worst culprit. I didn't notice that my son started to slowly improve then- I was focused on everything else, after all the doc said it wasn't autism.  As he got older he still wasn't right, not like boys his age, full of anxiety and phobias, loud noises preferred- to be alone. I have always pushed him beyond his  comfort zone forced him to deal with the world on its own terms. He stretches for more when I ask him to and he is usually happy he did. When he was diagnosed at ten I read a book by a local woman here in Arkansas called "Autism is not a life sentence" which seemed to tell me that I was blundering blindly in the right direction, if he had been diagnosed back when he was in the helmet, for instance and I had let the school system have their way with him, where might he be? I think his improvements are linked to our dysfunctional environment, the fact that nobody could zero in on his symptoms and forced him to deal with us, instead of forcing us to deal with him.
Where we live in Malvern there is no one who "gets" autism locally, in the school, the doctors office, nobody to lean on or go to for inspiration, no resources. I took him out of public school in the 4th grade because they thought the best way to deal with his frequent meltdowns (non-violent meltdowns btw where the chief mechanism was to shut down and refuse to respond, become non-verbal) was to call the cop from the middle school to come and scare him into submission. His teacher often told me that he just needed a spanking. I didn't find out about the cop for over a week, and I was at the school from 1:00 until 3:15 when school let out everyday because without my presence in the classroom he could not get anything out of it. He sat there lost in a haze of over-stimulation having no idea what was going on around him. And he had a string of paras who sat with him in the mornings too. No good, didn't help. But the cop thing was the last straw for me. As a single mom I have had to put him in school a couple times for different reasons always with similar results.
IN November last year we finally perfected the GFCF diet, we had been trying to do it for most of the year, but when I finally crossed the line and realized that we all had to change the way we think about food, it was finally successful and the result was almost immediate- he said "Mom I feel like I walked out of a fog" this difference in him is amazing. Still have the occasional meltdown etc etc. but the difference, wow. I am still worried that at his age he isn't where he should be, will he ever live independently? I don't see it at this point, I want to improve more I want to try chelation. I have read that if you don't do it within a few weeks of the exposure then their is no point, it won't help, that may be true as far as eliminating all traces of the damage, but I can't see that removing a toxin is pointless so I want to try it.
I am concerned   about using more chemicals to do it. this AC protocol or DMSA so many complicated procedures I don't know if it sounds necessary. I have been reading about a natural chelation procedure using cilantro and of course vitamin and mineral therapy along with Epsom salt baths and its cheap, natural, seems less intense. Doesn't require rounds, just start and keep going. I wonder how to get tests for baselines and then I wonder if its really necessary, I've never had baselines before. I know leads to me not being as credible with the docs, but then thats not why I'm doing this, I don't really care if I can prove to some doctor this is real and is working, I just care whether or not my son will ever learn to ride a bicycle or (dare I hope??) drive a car.
Yeah your right I don't have money to waste, cilantro is cheap, I can buy it with my food stamps. Its food, food is not something you have to regulate our creator gave us wonderfully designed bodies with an amazing system of toxin removal and immune system, if we just get healthy stay healthy how can we go wrong? I have been learning through just random reading and researching and I come to conclusions based on my gut instincts, experience and my faith in Jehovah God. There are some who have said its wrong thinking to assume we are broken and need fixing, which is how we all got in this toxic mess in the first place with drugs and vaccines chemical sweeteners and chlorine bleach spewing from our dishwashers, radiation pouring out of the microwave and tv, cell phones. I wish I could retreat to a desert island, eat the produce of the land and live in peace with my kids *sigh. Pipedream.
Anyway thanks for listening to me rant, sometimes I gotta do it, we all do. lol
Love,
Tori

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