CONGRATULATIONS! HERE'S WHAT YOU'VE WON!

By Jack Russell

Whenever you read the comments sections following any article related to the vaccine-autism link you inevitably see someone write about the “anti-vaccine” crowd and our “agenda.”  There is so much so obviously wrong with these statements, starting with the “anti-vaccine” label, but I’m always most blown away by the fact that we are perceived to have some “agenda” and that it wouldn’t be a universally held one.  I thought our “agenda” was merely something along the lines of this: things injected into children should be safe and not cause debilitating disease and parents should have freedom in determining what those things are.  But yet there seems to be some perception that we would have something more to gain if we were to “win” this public debate.

So, to be fair, I thought I’d conduct an honest accounting of what I’ve personally gained since coming to the view that the epidemic of autism is caused by exposure to environmental toxins (sometimes through vaccinations) combined with the harm done to the developing immune system from our current vaccination schedule. 

1)  The awesome responsibility and fear that comes with taking our children’s medical care into our own hands:  Prior to this experience I had tremendous faith in the medical community.  I had even wanted to be a pediatrician at one time in my life and looked up to them professionally.  I worked well with our pediatrician.  He loved me and my wife.  Now, we’ve moved and we have a new pediatrician.  He’s not a big fan since my “conversion”.  In fact, I believe he can’t stand us.  He fights with us about the flu vaccine.  He complains when he’s got to figure out a new dose of an antibiotic because I demand a pill we can crush up rather than the Red Dye #40 laced amoxicillin they typically peddle.  He’s jealous that we also take our children to a DAN doctor (that he casually suggests might be taking advantage of us) or an OT he didn’t recommend.  Sure, we’ll listen to the pediatrician, but ultimately, we’ve now got to go back and consult with each other, and perhaps the internet, and figure out what is best to do. 

2) The loss of faith in my career:  I used to work in a profession I loved and believed in.  I actually went into graduate studies in biology rather than medical school because in the end I thought I could do more good developing new drugs and vaccines than I could merely dispensing them. Now I’m not so sure about science.  Despite what I believe to be the pure motives of the small companies I’ve worked for, I now am coming to believe that our society’s whole application of science in general is potentially flawed and catastrophically dangerous.  This doesn’t apply merely to vaccines, but nearly all products we consume.  I’ve lost faith in science, what I would have considered my religion a few long months ago.  I now take no joy in a job that once inspired me and yet, I have to continue on in that job due to the responsibilities of raising two kids on the spectrum. 

3)  The loss of normalcy.  I used to fit comfortably in the mainstream.  Now, the school system thinks we’re kooks for the way we feed our kids.   We have to send lunch to pre-school everyday.  We have to deny our kids the birthday cake everyone else gets.  We buy organic laundry detergent.  We’re “those people.”

4)  The loss of a world view:  I used to feel confident in the economic and political world views I held.  I believed that capitalism would ultimately ensure that nothing but the best products were available.  Now I know that the health of little children will not stand in the way of the pursuit of the almighty dollar.  And yet, the only thing worse I can imagine is a government with the reach and power to perform whatever medical procedure they see fit at whatever time.  I now live with a sort of existential despair feeling like no economic/political system will ever function for the good of mankind. 

5) Zero dollars: Some might suggest that we (the autism community) stand to gain financially through lawsuits and compensation funds.  Lord knows we’d deserve it and hopefully a few will.  But for most us this will not be the case.  I can assure you it won’t be for me.  Ours boys are not clear-cut cases of regression.  We have nothing medically documented to tie vaccines to their autism.  I’m not even sure vaccines did cause the autism seen in my boys as opposed to some other unknown environmental exposure.  I’m not selling anything.  I stand to gain not one red cent from my views on this matter. 

6)  Someone to blame:  This one gets a lot of play in the mainstream press.  As in, “they are just looking for someone to blame.”  But I HATE knowing there is someone to blame for this epidemic.  I hate it.  It was previously not in my nature.  I was a let’s fix the problem kind of guy.  I hate the anger.  It is not healthy.  I didn’t want it.  Not for one second.  And furthermore, ultimately, if I want to spend a lot of time trying to blame someone I’ll find the finger pointing back at me. I know, and have probably posted at various times in various places, that we were just doing what we were told and believed to be best thing for our children and there is no reason to blame ourselves.  But yet, I was there.  I said okay.  I don’t truly recall but I might have even said/thought, “Oh, he’s not too sick, let’s go ahead.  I can’t get off work again next week.”  I helped hold their little legs down.  So, yes, maybe I’ve found someone to blame.  But unfortunately, at the end of the day if I feel like if there is someone to blame, it’s me.   

Looking over the list I’m having difficulty seeing where my self-interest in this controversy lies.  All these things are quite terrible and rather unwanted, especially when compared to billions and billions of dollars in guaranteed profit to be had on the other side of the coin.  There is one thing though. I gained the truth.  And with the truth I’ve gained, is the hope that if enough small voices cry it out eventually the truth will be heard and the world will become a safer and better place.

Jack Russell is the father of 3 1/2 year old identical twins boys, both diagnosed with Asperger's Syndrome

 

Comments

[Randy]

Thank you Terri

I have been lurking for a while - this seems like a natural resting place for anyone who's spirit is tired from all the politics of autism. Just dropping notes here and there to say thanks to other parents (Jack's post being a perfect example) who can sum it up and say it (whatever "it" is within the realm of autism related discussions) much better than I can.

We (in other families, other countries) benefit so much from the efforts of these journalists, scientists, activists, doctors, parents, lawyers, etc. - for now all I can pull together is the occasional thank you, fwiw...

-randy

[Terri Lewis]

Gayle and Randy,

Welcome! (I don't believe I've seen either of you here before?)

You have found a good, good place.

Daily news and commentary on autism, a sharing of emotions and advice from enlightened parents (enlightened whether we want to be or not), and most exciting: some of the most truly brilliant minds I've ever seen and some very hard-working, never-say-die individuals and groups working for positive change.

There are people here who have been working on vaccine safety issues for decades.

There are parents who have just "found out." Parents who have lived with autism for a long, long time.

There are journalists, scientists, activists, doctors, parents, lawyers, and many, many others--all touched in some way by autism.

I hope you will join us. Welcome!

Terri Lewis

[Gayle]

Dear Mr. Russell, I am also the mother of ASD twins, but mine have PDD-NOS, the garbage basket category for autism. Your article really touched a deep chord within me as I do not feel blessed by my experience with this disorder, either. In particular, your points number 1. taking your children's medical care into your own hands, and 4 loss of a world view, have been the toughest for me, personally. Am I happier with my knowledge? Primarily, no. When I think about the alternative, however, that is even scarier. My kids would be worse off today, if I had remained ignorant. Wish I felt happier, though!!! The loss of faith in medicine and our government is not fun for me at all. I wish you and all the rest of us in the autistic spectrum community the peace of knowing we are now doing all that we can to help our children reach their fullest potential.

[randy]

thank you Jack - couldn't have said it better. as far as guilt, that tears me up too - i know it's been said (here and elsewhere) that you can't blame yourself - but here's me 7 or 8 years ago - working in the information technology field - no stranger to the internet - and what do you think was one of the last things i did after my son's diagnosis ? i should have been tearing up the net searching for clues day 1 - instead i trusted what i was told - even a bit of denial mixed in there - maybe - not even sure how much or how long - too long in any case...

that becomes part of survival mode - fighting not to think about certain things - every single day i try not to think about how maybe i could have done so much more if i acted just a bit sooner. my better half tells me often that my son is so lucky to have such a great dad fighting for him, but some days, it doesn't feel like that, you know...?

[Sandy Gottstein]

momtodavon, I couldn't agree with you more. The whole point of my website Vaccination News was to create the opportunity to make that connection. But, so far, it would seem, with few exceptions, the only people getting the point are those who are forced to by their experience. Somehow, we have to get the message out. If we can't it means nothing will change until everyone has been harmed by vaccines, and by then it will be too late.

[Diane Farr]

I have to blame myself and I forgiven myself. What I can't do is forgive those that are putting children at harm to save their reputations. I am grateful for age of autism. I am free to be me and talk about recovering a child from autism and question vaccine policy without being made to feel like a traitor or unstable. Surely, mainstream has got to realize that by us acting like this that we are not wanting to be part of the problem; just the solution.

[momtodavon]

To Sandy Gottstein- The problem is that the public isn't making the correlation that not only kids are getting vaccines and getting sick but teenagers, adults and the elderly are also getting them and many of the immune system disorders are on the rise (alzheimers,ms,scleroderma,diabetes) and look at the military! When the Hep B series started for babies it also started for college students and hospital workers and so on and when I worked in MRI between 5 and 10 years ago it seemed like there were tons of people in there early 20's coming in with "MS" like symptoms. If the public started to make the connections then maybe the need to take a common sense look at injecting toxins into you body will be more important.

[Sandy Gottstein]

Excellent post, Jack.

However, until and unless we demand that vaccines are no longer "mandated" (creating a free market environment), until and unless we do not succumb to "the power of fear", until and unless we demand properly designed and controlled studies, until and unless we recognize that no one cares about our children as much as we do and that no one should be be given our blanket or blind trust, injury to our children will continue to occur. If and only if parents blaming themselves results in such change does parents blaming themselves serve a function.

My biggest fear, however, and so far it has mostly been borne out, is that only those who become apparently damaged by the vaccines seem to care. How do we get the attention of those who have not been personally touched by this situation?

[Twyla]

Thank you so much for writing so eloquently about some of the most infuriating things we constantly hear, such as the "anti-vaccine" label, and that parents are just "looking for someone to blame" or looking for a pot of gold. Regarding the pot of gold, one hears of families who won their case in vaccine court and then still have to go through years of fighting just to get reimbursement for expenses clearly related to the child's vaccine-induced condition (such as a wheel chair for a child who could not walk).

Another really annoying comment we hear over and over again is that voiced by "Sandy" below: "As long as they make us immune to things like small pox and polio, I say keep 'em going!" First of all, the small pox vaccine is not even an issue because it is no longer given. The risk of contracting small pox was found to be lower these days than the risk of adverse effects from the vaccine. Second of all, I can't speak for everyone who have concerns about vaccine safety, and there is some debate on this, but I certainly believe that vaccines were very important in eradicating small pox and polio in the U.S. This does not in any way change my belief that the current vaccine schedule is too much too soon and contains harmful ingredients and that the problems are not being addressed. Pharma profits and influence on gov't agencies are resulting in too many vaccines being mandated, often containing unsafe ingredients. Many of these vaccines are given for diseases that are either very rare or fairly low risk. I know I'm preaching to the choir, but I could not leave Sandy's comment unanswered. We have a generation of children with immune system and learning disorders. Moreover, for many of them the vaccine-induced immunity to diseases such as mumps, measles, and chicken pox will wear off and they will be vulnerable to these diseases as adults when they can do more harm.

The four arguements above were repeated ad nauseum among the 431 comments to the March 21 NYT article "Public Health Risk Seen as Parents Reject Vaccines ". I found myself wondering, "Why are so many people writing in to repeat the same thing over and over again and wasting the time of those who are reading this blog?" I came to the conclusion that many of the comments must be made by pharma plants and others who are against our community. They accuse us of flooding these blogs with repeated comments, but I think that is happening on their side, not ours.

[nhokkanen]

Re: #5 Zero Dollars - I'd say "Negative Dollars." Since I had to quit working full time 10 years ago, our family has lost hundreds of thousands of dollars, and paid out money for treatments and therapies we really couldn't afford. My husband and I may never retire.

Also note that any monetary award from the National Vaccine Injury Compensation Program will be attached by the State to recover their costs for services to your child.

I hate that lame "anti-vaccine" label. And am disgusted at people who can read story after story about children's vaccine injuries, but still say "keep 'em coming" just because they were lucky to have dodged the bullet.

People must open their minds and accept the paradox that a product intended to improve health is having the opposite effect for some children. Like peanut butter, you don't force it down everyone's throats.

[Gatogorra]

I have wanted to read just this article for so long. It's as if had to be written from the moment this began happening to our children and I'm so glad it was done by you. You describe the situation perfectly. You were the right voice for the thing that had to be said.

I know this sounds sort of grandiose, but I've also noticed that there's an emblematic loss in all of this-- loss of esteem for the world at large, loss of faith, loss of trust, loss of belonging and friends. The loss of self-image of being easy-going and forgiving all the time. The price of truth. Is it worth it just so that all the poems and art and plays by Shakespeare on dispossession now speak directly to us because now we get the "universal theme" of the price of truth? Sometimes I don't know. I wish we could have all read about it in a book instead of having to end up so "refined" by the sheer horror of it. But here we are.

I understand the wisdom of what you wrote about enduring this kind of stress not representing a gain, but I wonder if the anger in this situation is necessarily unhealthy. It's like saying a fever in response to a virus is unhealthy. Sure, if the fever was happening for no reason but there is a reason. Maybe lack of anger in this exact context would be just more unhealthy and it's all relative. There's always a balance: I don't forgive the culprits because I need that forgiveness to go easy on my family and on my children who struggle so much. I see people for whom NOT appearing angry and NOT designating responsibility-- sort of generally copping a la-dee-dah positiveness, maybe for the sake of retaining a social niche and self-image as "not angry"-- is more important than the truth or justice or protecting future children or even *their own*. And I have to think that they're the ones actually rotting from the head down, like fish.

Here's a line of poetry (roughly) that I can now suddenly relate to because of having the dubious "gain" of being initiated:

"Be careful what you forgive. The young will not forgive in you what you forgave"-- Yvgeni Yevtushenko, "Lying To The Young Is Wrong".

[John Best]

Blaming yourself is not healthy. Autism may have been a blameless bit of negligence before Verstraeten in 1999. Since then, every case of it is a crime. And, every child who can't afford all the treatment they need is an even worse crime.

[Jeanne]

I can only speak for myself when I say that I don't blame myself for my child's autism, I blame myself for not being more educated on the potential dangers of vaccines. Where the blame comes in for me is, in the past, when I would think about buying a new vacuum, car, appliance, book, CD, computer, electronic device (and the list goes on), I made sure I did research and got the opinions of others before spending a dime. When it came time for vaccines, I didn't research anything, I didn't question anything, or anyone for that matter. Why did I put so much thought into what kind of vacuum to buy; yet, didn't think about asking, "Hey, what's the deal with vaccines anyway?" I mean, we all know that truth in advertising is a rarity, so why is it so hard to believe that the advertising [aka propaganda] of vaccines could be lies as well. Yet it took my son being harmed, damaged and permanently affected for me to WAKE UP! So you see, I carry some guilt and I blame myself to a certain extent. Thankfully, I am learning to let go of those negative thoughts.

[Julie Rishel]

Dr. Mercola has fought the vaccine issue himself. In an article I read today, he supports your view that we need answers for the sake of our kids. Where is the evidence that vaccines are safe and effective? I haven't found any. What I have found is the evidence that our kids are at serious risk. What I have seen is autism in what was once a neurotypical toddler who was vaccinated with 5 injections on a day he was ill. What I was told was that everything would be fine. I trusted them. I used to blame myself. Now, I blame the people who are not listening for the sake of ALL children, not just mine. I, too, have an agenda. It is to inform all who will listen about the dangers of mass vaccination. Parents have a choice. We deserve to be informed. We can then choose how many, when, or if we vaccinate at all. Our kids are not cattle to be lined up and vaccinated because someone mandated it. If they would have cared enough to test my child for any predisposing factor that would not allow him to handle vaccines, I know he would not be autistic now. "It costs too much money to test all children." How much do you think autism costs you? I talked to a prolife group who is also fighting to get aborted fetal tissue out of vaccines. That's right. Did anyone know they are putting aborted fetal tissue into your child's vaccines? How many people who are against abortion are unknowingly injecting this into their kids? You didn't know what they do with aborted fetuses? Now you do. Be informed. Make an educated decision once you have the facts. My son is now medically exempt. He never should have or could have handled a vaccine. My daughter never created antibodies to any of the diseases she was vaccinated for. The doctor's answer? Vaccinate her again. My answer? Not on your life.

This link has a great article:

http://articles.mercola.com/sites/articles/archive/2008/04/01/the-dangers-of-excessive-childhood-vaccinations.aspx

[Sandy]

My mother doesn't blame herself, or her doctors, or my brother for his autism. You make it seem as though vaccinations are horrible things, when, in fact, they save lives more than they take them. As long as they make us immune to things like small pox and polio, I say keep 'em going!

[Dan Olmsted]

Jack,

What a great piece! You really convey to someone like me, without an affected child, the emotional dynamics and the real cost of putting the truth first. If it's any consolation, I don't think it takes much in this society to feel cast out of the "mainstream," whatever that is, and to have your faith in the civics-textbook version of things sorely tested. Let's hope that the self-corrective power of the free press, which very much includes powerful articles like this one, takes hold before it is too late. That's what Age of Autism is all about. In a few years there will be a new mainstream that we've all helped create. Please keep writing for us!

Dan

[Cathy Jameson]

Jack,

Excellent post! I have very similar feelings as you do. It's what keeps me glued to this topic, raising my voice and concerns and writing about truth and hope for all of our children.

Cathy

[Tanners Dad]

I would like to think at the end of the day, when the dust settles and the world comes to its senses that injecting nasty things into little babies, that we can have a world with resources to help their sons and daughters. I need help with respite, therapies, legal problems, IEP problems, medical problems, and counseling.

I am a middle class individual thinking I have the fight of my life. I have seen the wealthy struggle. I fight for those who can not. I have heard of things that happen to Autistics around the world and even here at home for poor uneducated single mothers.

I really don't care if they call me names. I do have an agenda. Some probably could call me borderline. I am not stupid... I know that vaccines have done many good things but we need to stick to the mantra "Green our Vaccines"

I think that should be the next Generation Rescue ad... Showing a mother to be turning down a cup of tea or coffee... With the headline "next week I will inject the poison right into his bloodstream."

[Robin Nemeth]

One of the things that really makes me angry is when parents blame themselves for having trusted their doctors and their public health agencies.

These people have earned a very comfortable standard of living. Their job was supposed to be to protect the health of your children. You paid for their services, you were entitled to trust them. It is their fault, not yours.

[Jeanne]

Well done Jack. Thank you for pointing out that there are some of us out here (a lot of us) who have nothing to gain by this situation, who don't blame anyone except ourselves, and who still have faith that we can make change by continuing to raise our voices.