ActivismHealthSpecial Needs

from anti-vaxer to vaccine advocate

This is something that I’ve been wanting to share for quite some time, just never had the motivation or purpose to do so. Quite frankly, I’m embarrassed by it, and I’ll get into that in a bit. I’m doing a blog improvement course and one of our writing prompts is to answer a question that we get asked a lot. I often get asked why I am such an ardent advocate for vaccines. So here’s my answer….I am passionate about getting the truth out about vaccines because I was anti-vaxer. Yes, you read that correctly. For almost a year, I stopped vaccinating my child.

I have previously written (on my personal blog) about our “D-Day” or Diagnosis Day. It was July 3…right before a holiday weekend. We were given a diagnosis…and we had no one to talk to. Offices were closed for the holiday. Just us and the internet…all weekend long. We searched the internet because that is what parents do now. With Kevin’s condition, we had this beautiful 8-month-old baby in front of us, but what the internet told us was quite ugly. Among other things, we read that he could/would develop: seizures, mental retardation (because that is the term that was used then and trust me it smacks you in the face much harder than intellectual disability), learning disabilities and autism spectrum disorder and possibly a sudden unexplained death syndrome-sort of like SIDS, but for older kids. Too distraught to even talk much, we shared the news with close family via phone and email and sent them the link to the information page.

I have since come to accept and even embrace that those words are no longer ugly, as our children make them beautiful. But when you don’t know any better, those are ugly, ugly words. Well, the death part, that is still an ugly word and something I fear for him. When you don’t know any better-autism and mental retardation are ugly words.

When you receive a diagnosis like this, I can’t even explain what it feels like. It is so many emotions and yet a complete emptiness all at once…I had this mania running through my head because I didn’t know where to turn or what to do first. You hug your family, your cry, you scream, you read and read some more. The bottom line is that there is such a rawness and complete vulnerability that you can’t even explain or try to recreate or liken to something else.

One thing the anti-vaccine people have going for them, is that there is more anti-vaccine information online than there is true vaccine information. Or it appears that way, I haven’t done a website count. There is a plethora of anti-vaccine information online and those folks are very good at SEO. SEO is the practice that when someone does a Google search, you want them to land on your page for certain topics so you can structure your website that way. If you do any one of numerous searches about vaccines, autism and other topics, you very likely will get many search results that contain false and inaccurate vaccine information. Yes, it is false and inaccurate.

However…I was in a very bad place. It was like I was walking around with no skin on. I felt like people could see into my head to see what I was thinking and doing, like they could see my soul. I am embarrassed for falling victim to this scheme and for what dangers I could have caused my family and others, but I cannot make apologies for how vulnerable I was. It’s just part of the process. When you get a diagnosis like this, you have to mourn the loss of your typical child and prepare for life with a child with special needs. One of the other steps in this process is to try to “fix” your child. And dammit, I was going to fix him. No way my kid was going to develop autism (silly me, looking back, signs of autism were present from the moment he popped out). No sir, I was going to be *the* mom who prevented her child from getting autism. And according to what I was reading online, one of the ways to do that was to avoid vaccines. So I did. Again, just to point out how frazzled I was at this point in life, he was 8 months old–so he already had vaccines at birth and regularly up to 8 months. But it made sense to me at the time, that’s all I can say now. I know I mentioned it to my husband but I’m not positive he fully understood what was going on–like most households, I take care of the “mom” stuff and he trusts me to do the right thing. That part hurts me–that I was trusted to just do what needed to be done and I failed. I failed my son and my husband. My husband also was dealing with the diagnosis himself and making sense of it all while trying to maintain a job and everything else.

To give you a time frame, this was 2007. That’s important for several reasons. First, Jenny McCarthy’s book didn’t come out until 2008. I wasn’t listening to her. In fact, her book came out around the same time as Dr. Offit’s, and if anything, her book pushed me in the other direction. Andrew Wakefield was certainly not trusted by his {then} medical peers, but as far as the general public, he hadn’t been fully outed yet. His fraudulent study was not retracted until 2010, the same year he lost his license. British journalist Brian Deer published some of his material in 2004, but Wakefield still had a medical license and published study to fall back on. Facebook was around but still very much in it’s infancy and popular largely with just college kids and young adults–I wasn’t being presented information by my close friends, neighbors and peers. I was finding this information online, mostly just from searching and from some parenting chat boards which were popular at the time. Blogging was still also very much in it’s infancy, many people had never heard of a blog. If you saw an article online, you assumed it was from a credible source. Now that blogging and self-publishing are much more popular, we question the source more as readers. There are many blogs and anti-vaccine sites that go out of their way to design their site like a credible news site….when they are in fact, just blogs. Don’t get me wrong, I love blogs, obviously. But anyone can start one at anytime.

My pediatrician. Thank goodness she was patient with me and didn’t kick me out of her practice. I still took him in for his regular checkups, and since we were still in the early phases of being diagnosed, he had many follow-up and specialist appointments. Each time, she’d ask me to vaccinate. There was lots of screaming (both of us) and tears (mine). I was belligerent, adamant and oh-so-much-more educated (ha, like most anti-vaxers think) than the general public. I distinctly remember her saying, during many of our arguments, “Just you wait, there is information coming out….” She was aware of Dr. Offit’s book coming out, but it hadn’t been released yet.

For a few months, I acted like nothing short of a giant horse’s ass. I spewed all the buzzwords-proteins, antigens, adjuvants, alternative schedule…I knew it all! This is the really embarrassing part of this journey, because when I hear or read some of what the anti-vaxers say now, in my head I think, “Crap, I can’t believe I used to say stupid stuff like that.” They use big words. There’s a really funny and odd meme that makes the rounds of Facebook every once is a while, and it says “Vaccines don’t cause autism, they just cause demyelinating of the sheath which causes autism.” Sounds impressive, doesn’t it? TOO BAD autism is NOT a demyelinating disease! The most common demyelinating disease is MS, which is NOT autism. But this is the type of language that these folks use to sound and feel superior to you.

When you are in a very vulnerable spot, it works. Once you are there, you are drawn to it. You feel like you making proactive choices for your child. You find a common bond in others who have made these choices. You seek reassurance online that these are good choices and there are plenty of people willing to reassure you.

A few months went by and during another argument with my pediatrician, she pleaded with me to read Autism’s False Prophets by Dr. Offit which was just being released.

So I did. I don’t know if it was fate, karma or me getting my feet back under me and coming to my senses….but I actually went home, ordered the book from Amazon, waited a few days for it to arrive, and read it. And once I started, I couldn’t put it down. I felt ashamed, I felt scared (for what I had exposed Kevin to), I felt stupid…I felt relieved.

And then I became angry.

Because here’s the thing….there is no case for not vaccinating your child. Vaccinating has risks, no one has ever claimed that it doesn’t. But the risks of NOT VACCINATING are GREATER than the risks of vaccinating. It’s really that simple. Both have risks, one has a greater risk of harm to children.

So I’m angry for being lied to. Because it is all lies.

As I got my feet under me, I began to embrace my child for who he is, instead of living in fear of who he may become. I felt a life calling to help children with disabilities, and in 8 years I have encountered hundreds of children with various disabilities–including some cancer patients and cancer survivors, children who are medically complex and medically fragile, and some who have other issues that cause them to be immuno-compromised. So then I get angry all over again. Because these anti-vaxers are putting those helpless children at risk. A child who is going through chemo, and her parents…they have enough to worry about. They shouldn’t have to worry about some mom passing the flu or chicken pox onto their child because they believe false information. I get really angry when I read things like “I don’t care about herd immunity” because while you may not care, for some children, their lives depend on it. Those are the moms I want to throat-punch. (mostly kidding, I’m not violent at all, but that makes me seethe with anger)

As parents of children with special needs, we are a very vulnerable population. For as much as I love my child and am able to celebrate him for who he is, we still sometimes wish there was a magic pill or potion that could make all of our struggles go away, right? There isn’t, it’s just a daydream. But, for the anti-vaxers, they usually have an expensive and interesting array of products to go along with your not vaccinating. None of which is proven to work. If they talk you into not vaccinating, that doesn’t bring them any money. But, if they can sell you the promise of fixing your child with special diets (just buy our book for details!) or supplements (widely available on these sites) or anything else….well it’s quite a lucrative business. Let’s be honest, the 2011 financial report for the NVIC, just one of many of these organizations, lists that they brought in a million dollars. Where did that money go? How many children did that money help? (answer:0) Exactly zero lives were made better. They can rant all day long about ulterior motives of doctors, but the anti-vaxers are making a very nice profit for themselves.

I’m angry that I was lied to and encouraged to put my child at increased risk. He has significant special needs and is non-verbal, a headache or backache from meningitis would be impossible to recognize. He has hypotonia, which means he does not have the muscle tone or strength to produce as forceful of a cough as his peers–something like pertussis or an infection could quickly settle in his lungs and become dangerous. Plus, chromosomally, he is put together differently than you and I…at the most basic DNA level, we don’t even know if his body’s reaction to things like measles and chicken pox will be the same reaction that is seen in other kids. It could be much worse. I still get a feeling of panic and sadness when I think of what could have happened.

That book changed my life. I have been so impressed by Dr. Offit’s writings and his commitment to letting people know the science and what is real and true…I wanted to meet him. So this summer I arranged for a few bloggers to tour the Vaccine Education Center. I will post more on that tomorrow. I sometimes wonder, if it hadn’t been for that book, would I have come around? What would have been the catalyst for me to regain my common sense? I don’t know…but I am glad that it happened sooner rather than later.

You know how when people who are former smokers…they become the most ardent supporters for people quitting smoking? It’s like that. I am determined to help my fellow special needs moms not fall victim to this nonsense. Nonsense that is actually becoming dangerous. We are seeing vaccination rates that rival some parts of developing countries in Africa. We are seeing epidemics of measles and whooping cough that we haven’t seen since the 1950s.

All because fear sells.

Now it’s time to fear the diseases again. Vaccine skepticism is a first world luxury. For now, anyway.

So there it is, all out in the open. I think it was easier for me to come to my senses because I am a science person and skeptic anyway. I need to see evidence. I truly feel that there are probably some anti-vaxers who are in it so deep that they can’t get out, even though in their gut they know that they have been lied to and are lying to others. It’s very hard to stand up and say “I was wrong” especially when you have put your family in danger, put other children in danger, and have encouraged other moms to do the same. But there is always time to do the right thing. You don’t have to go full force and join Shot at Life and become an advocate like I have. You can start with one big, meaningful step–take your child to get vaccinated. Get caught up on his/her vaccines, apologize that they have to do so many so late in life. Allow yourself to feel guilty for being misinformed and allow yourself to forgive yourself for that.

To recap:

  • Most, if not all, of the anti-vaccine propaganda out there is false information. It’s lies.
  • Most, if not all, of major players in the anti-vaccine movements have a product to sell.
  • By not vaccinating your child, you are not eliminating risk. You are merely changing the risk to a greater one. All scientific data shows that the risk of the disease is greater than the risk of any vaccine injury.
  • Not one single study has shown that vaccines cause autism or increase the likelihood of it.
  • There is no giant conspiracy to suppress information about the danger of vaccines. Fear sells, are you buying it?

Is death from a disease really a better risk than autism? Is autism so horrible that you are better off risking the child’s life? I don’t think so. And I think it’s insulting to people with autism to infer that notion. If you are on the fence about vaccines or know someone who is, I encourage you to read and share this book. Having spent half of a day with Dr. Offit, I can tell you that his motives are genuine. It’s about promoting the science, the facts and what is the better option for children. He is not some villain like the anti-vaxers would like you to believe.

You can click on either photo to order from Amazon. Dr. Offit donates all proceeds/profits from these books. Later today, my post about my visit to the Vaccine Education Center and our chat with Dr. Offit will be live. Stay tuned or subscribe over there–> to our RSS feed so that you don’t miss it.

 

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Lisa Lightner

Lisa Lightner

Lisa Lightner lives in southeastern Pennsylvania with her husband, two boys and two dogs. When not screaming at her kids in public, she can be found on her special needs parenting blog, ADayInOurShoes.com where she offers advice, support and fun tips for special needs parents.

2 Comments

  1. October 22, 2014 at 4:35 pm —

    I hate to focus on a detail, but though you spoke a lot about “the diagnosis,” I didn’t see where you actually said what it was. I’m guessing it was autism or some ASD diagnosis, but some of what you said didn’t seem to fit. Anyway, it made it hard for me to put the posting into a coherent whole. (Or maybe it’s just that I have a touch of the ASD that my son is diagnosed with and which we suspect my brother, father, father-in-law, and aunt have, and have trouble reading between the lines.)

  2. October 22, 2014 at 5:27 pm —

    Sorry, he has a chromosome disorder, a duplication. I’ll leave it at that. Yes I’m a blogger and I put my kids “out there” sometimes, but I purposely left that out. I don’t know why I feel this way, but I do.

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