Sunday, June 22, 2008

A strange place to start

Along the march route during the Green Our Vaccines Rally in DC in early June it occurred to me that none of us would have been there that day if 'it' hadn't really happened, if our kids hadn't been made so sick by their vaccines. We had better things to be doing that day. It was excruciatingly hot, expensive and inconvenient and huge sacrifices had been made by all of the families attending to get ourselves there and responsibilities covered at home....but there we were, 8, 000 of us.
When I held my picture of Nick up with the 8,000 other pictures while Sam Cooke played it became crystal clear to me. This did happen to all of us and countless others and the numbers continue to rise. The sign I thought so original; a picture of Nick at 8 months- a fat happy baby and then at sixteen months-swollen, vacant, agitated, dark black circles under his eyes, wheezing, full of mucus and outrageous diarrhea, was everywhere. I counted thirteen that were the same.
I came back to Boston with a conviction and courage that had been missing before. The reason the dietary changes and biomedical treatment are working is because we are healing him, slowly and purposefully from an assault on his immune system. Like so many other families, we are finding that our children diagnosed on the Autistic Spectrum are physically sick. Despite the bruising and rage inducing fact that our pediatricians, neurologists, GI's and on and on don't believe us and think we are crazy, we persevere because our children are slowly getting better.
Prior to the March my suspicions were growing stronger. We started like many families do with 20 hours of home-based Floortime and ABA services, the rounds of depressing diagnostic evaluations, the transition planning and IEP and then into the world of Special Education parent. We work with speech therapists, PT's, OT's, and Developmental Specialists, most incredibly talented and loving but something was missing. The more I read and I read everything I could get my hands on; Jepson, Bock, McCandless.....Nick fit the picture. His ear infections and need for three sets of ear tubes weren't just a coincidence with the Autism diagnosis. The fact he had, had diarrhea for three years wasn't because he was a picky eater. His low muscle tone and lethargy and anxiousness and poor motor planning were part of a deeper picture. A picture shared by many, many children. My son, like so many others, had been neuro-toxically injured by his vaccines.
I disagreed with my husband initially. I thought is was too simple an explanation 'Vaccines cause Autism'..what about our seven year old daughter? She's ok. What about all the children who don't get sick from their vaccines? It seemed too linear, too inline for his male need for a culprit to blame. And after all, it seemed inconceivable, too frightening to be possible. Then our arguments blended into the blame game. I after all, as the CEO of medical care in our family, had driven Nick to these appointments, asked the nervous questions "these really are safe?" and accepted the given explanation. If this was true, should I throw myself on a massive funeral pyre like all the other mothers who had done the same and ruined our children?
I still battle gravely with my guilt. How could I have done this to such a vulnerable being? This pain is only slightly tempered with the vision of pediatricians having to slowly come to terms over the next few years with their devastating role in the destruction of a generation of children. But I go forward with energy because Nick is getting a little bit better all the time. If he can go forward so can I!
I read recently, in Andrew Solomon's piece in New York Magazine, that the head of NIH has come to the conclusion that the parent's know more than the doctors at this point. Yes, this is abundantly clear to me. As my experience has shown me, it is the mommies that will get you through. The best information, resources, ideas, support and courage I have received has come from other parents daring to try to fix the damage vaccines have done.
I believe vaccines save lives. I wish the shots babies everywhere will receive tomorrow were clean of horrible preservatives. And I wish the vaccine schedule wasn't driven by pharmaceutical interests. What I wish for most of all, beyond the healing of all of these injured children is immediate ownership by the medical community that 'this happened'... vaccines made our kids sick and now we are compelled to heal them. Until that happens I am going to write to keep myself going and any other parent on the same journey that wants support. I believe you. Alison MacNeil

4 comments:

Jean said...

Dear Alison,

I loved reading your blog and am so pleased I was able to attend this most historic autism event (yet) with you in DC! I wish you and your family all the best in recovering Nick. I know he'll fare well, he has an amazing Mom!
Remember, visualization!!!

Jean

Rebekah said...

Alison,

We too attended the Rally and are committed to change.

Awesome Blog. I am in the process of starting our own as well.

I posted this on the TH site but it is waiting approval (I guess because I put a website address in it?)

I read through this site last night and found it fascinating and thrilling that someone/several people are uniting to track and manage the flow of information about research related to Autism/Thimerasol/Toxins as well as the Legislative History.

http://www.autismfacts.com/index.php

I also feel that there are so many Autism groups, all with valid goals and purpose but until we as a community/population/demographic begin to unite in our efforts it will be easier for policy makers to dismiss us.

When the time is right for you and your family please get involved in activism. It took us more than 18 months on the path to recovery before we had even an ounce of energy to even read about this stuff but I have found it to be empowering and motivating to help change the route of health care.
Rebekah

~Zurama Arencibia Nuñez~ said...

I didn't attend the rally, but I was there in spirit. My son is vaccine injured too.

Anonymous said...

http://www.parentsinjusticegroupscotland.co.uk Parents Blogging website for all.

http://www.profitableharm.com/home.html Vaccine damage link

NAME AND SHAME THOSE SOCIAL WORKERS THOSE JUDGES AND THOSE CHILD ABUSERS IN THE STATE SYSTEM ANYWHERE WORLDWIDE.

Had you child stolen ?
Had your child suffer after childhood vaccinations ?
Is your child in care ?

Does your child have adhd autism aspergers allergy or a moderate learning difficulty ?
We have been created by the need to fight widespread social care injustice and abuse of draconian state power. Children are being ripped from their parents simply because they are considered “unconventional” or even single.
Just like pigs we rootle under the surface to find those golden nuggets of truth hidden beneath half truths, targets, idealised aims and a “not my decision” culture. In fact, we are the truffle P.I.G.S. of the social care world.

Our aim is to help and support parents who have lost their children through spurious reasons. Low income, untidy house, learning difficulties,Vaccine damage, bad diet, disorganised lifestyle or a perceived non cooperation with social services.
We don’t claim that these are fully acceptable but if the money wasted by the legal and social system was spent helping families with these difficulties there would be no need for their abusive and draconian behaviour.
The whole system cannot be seen to have made a mistake, so they cover up any dodgy decisions. Everyone has seen how government and bankers squirm out of responsibility for their actions. Even sympathetic solicitors have little chance against this state conspiracy.
The worst thing about the whole rotten business is that the children pay for the rest of their lives. And it doesn’t stop there. Their children end up suffering too. Three generations affected by inept decision making, it’s beyond criminal.
So please get in touch however hopeless and battered you feel. We can and will make a difference to you and your children