Am I?

When I first started putting words to paper (well, screen) and decided to share my thoughts and experiences with anyone who’d be kind enough to read them, I had a dear friend ask me if I found the writing to be cathartic.  Just this week, I had another dear friend send me a note that said she liked my honesty and hoped writing helped me deal with the frustrations that are coming along with trying to find answers for Sammy.  (And I miss seeing you, too!)

They’re both so right.

When you get me in a room and ask my thoughts on something, I rarely am without opinion and plenty to say.  Over the past six months, I’ve learned so much, and have discovered that I have an awful lot of thoughts on so many things that I had never even contemplated before autism entered our lives.  I wish I could find the words – and the time – to write about it all.  But then there is this life that we’re living in that doesn’t always lend itself to moments of escape to get the the thoughts out of my head and onto the computer screen.

So, I may not always be super timely or current, but I will always be honest and real.  And I decided it was time to be honest and real about a particularly taxing subject within (and outside) the autism community.

A few weeks ago, I was talking to a friend, another autism parent who has had years on this journey we’ve just begun, about the debate over environmental factors vs. genetics as the root of a child’s autism.  I said I didn’t see how environmental factors could NOT be the bigger trigger, given that my kids all have the same general genetic makeup, but, although they all have their issues, the environmental factors, including vaccinations, are what I know were different among all three of them.  He then asked me if I was “one of those vaccine people.”  I don’t even really remember how I answered him, but I’ve spent a lot of time since then thinking about that question.

Even six months ago, I probably wouldn’t have had a firm, committed answer.  And I’ve realized that I’ve actually been afraid to express my true thoughts on the subject because there really are people reading my blog.  (Yay friends!  Thanks!)  I didn’t want to offend anyone (regardless of their “side” of the debate).  And I didn’t want to be one of “those” vaccine people.  You know what I mean – most everyone, whether in the autism world or not – has heard the name calling.  Irrational, frustrated, under- or un-educated, naïve, uninformed, emotional, desperate, delusional … and the list goes on.

Emotional?  Well, yeah – hard not to be when it’s the health, safety, and future of your kid at issue.

Desperate?  For answers.  You bet.  I think we’d all concede to being desperate to find an answer to our kids’ conditions.  I want my son to live a full and rich life.  Today, we just don’t know for sure that will ever happen.  So, yes, I’m desperate for answers.

Frustrated?  You have absolutely no idea.

But the others?  The ones that seem to be tossed around with little regard to the hurt they cause?  Now, those are the ones that just plain tick me off.

There’s been a lot of press concluding that there have been “numerous” studies discounting any correlation between vaccines and autism.  Accepting that fact as true seems to be a catalyst for a lot of the other characterizations.  Because I’m a bit skeptical by nature, and spent years learning how to research both sides of an argument (generally not considered naïve and certainly not uneducated), I wanted to look at the issue in as much depth as I could before deciding what my position would be, I started looking into the research myself.

I had heard on a morning TV show that there were 16 studies that have shown no association between vaccines and autism.  What I didn’t hear about were the more than 45 studies that have shown that there is a correlation.  And although correlation does not equate to causation, those studies are awful hard to ignore. Read the summaries.  Plod through the studies.  Then try to tell me – or yourself – that there’s no association.

And then there are the people I’ve met.  A medical professional whose daughter was developing normally until receiving nine vaccines in one day.  A newborn baby who started seizing immediately after her one and only vaccine and who died as a teenager after a life-long battle with seizures and other medical conditions.  A little boy who was talking and playing and healthy until his 5 year shots – and who has not spoken since.  And hundreds of other stories I’ve read.  These people are certainly frustrated, emotional, and desperate for answers.  But few would seem to be irrational, or delusional.  It happened to their kids.  They were there.  They know.

Then I thought about our Sammy.  I remember so clearly the day (or the days following, anyway) the six vaccinations he received at his two month well-baby checkup.  We brought him home from the doctor to have him spike a fever and start vomiting.  For days.  I had the puke phobia before that, so trust me when I say that I remember how incessantly it continued for a week.  We were told it was just a normal reaction and to wait it out.  And we did.  And, although I refused the second round of the “new” vaccine that was in the two month shots (because I was told that was probably the reason he was so sick), we gave him five more on the same day two months later.  And by the time of his six month check-up, the ear infections had started.  He had one the day we gave him four more shots at that appointment.  And they didn’t stop until he had tubes put in his ears at 14 months.  During the interim – when he was fighting the non-stop ear infections – he got five more vaccinations.

Now what I’ve learned about genetics and autism since then tells me that our little guy had a lot of cards stacked against him.  His family – on both sides – has a plethora of auto-immune problems, from thyroid disease, diabetes, and eczema to fibromyalgia and multiple sclerosis.  Autism (and the related issues ADHD and allergies Sam’s brothers are dealing with) is highly correlated with a history of autoimmune disorders.  Sam also has a genetic abnormality that makes it more difficult for him to process and get rid of toxins in his body.  In the simplest of analogies I’ve heard, Sam’s genetics loaded the gun, and environmental factors – among which I believe were his vaccinations – pulled the trigger.

Please don’t get me wrong.  We don’t blame Sam’s doctor, who treated him and his brothers with passion and heart and advised us to do what she believed to be best.  The American Association of Pediatrics, the AMA, the CDC, the pharmaceutical companies and their paid physician-spokespeople push those 16 studies that say there’s no connection and ignore, actively dismiss, or angrily indict the more than double the 16 that show there is.  (You can read a summary of some of these important studies here.)  That’s what doctors are taught.  And if the leaders and spokespeople of the medical community refuse to acknowledge that something is triggering this national crisis, this epidemic, it can only get worse, with our children as the casualties.

I don’t expect everyone to agree with me.  I know both sides of the debate.  I’m a litigator by triaining – I can argue both sides of the debate!  But what I truly pray for every day is that the debate continues and draws more attention.  Not ridicule.  Not name calling.  Not disgust or contempt.  For anyone.  But attention.  So that studies are done to find real answers to why autism is ever-increasing, why ADHD diagnoses are rising, why more children have learning disabilities than we’ve ever seen in history.  So that answers can be found for improvement and recovery.

Clearly I don’t profess to have all the answers. But what I do have is a love and compassion for Sammy and ALL children afflicted with autism. And like any caring parent, what I want more than anything else is a chance for these children to be heard – objectively.

So, in answer to the question … yes, I guess I am one of those vaccine people now… And I will always wonder if, had I been before, would Sam’s life be different?

4 comments on “Am I?

  1. As someone who has formerly worked with kids with Autism, I am impressed with your research! Many parents just go with the flow, hear the newest thing out there about Autism, and just decide that is why their kids are different. I am not sure there is a 100% correct answer to what “causes” Autism or why it shows up in some kids and not others, but I do believe that it is a combination for factors. I do pray that they continue to find answers for the disorder so that we can tackle it earlier and have the best intervention possible!

  2. Thank you for sharing your story. I’ve come across a lot of parents in your same shoes the past few years (because we don’t eat gluten), and I wish there were more answers to the many many questions.lots of love to you and Sam.

  3. Thanks!  I have to say that there are so many parents that have spent years in doing the research that I’ve only just begun … and I’m thankful to them for doing it every single day.  It’s all about our kids – and that’s where I think we have to keep the focus!

  4. Thanks so much Steph — I’m so there with you, wishing each day for more knowledge and understanding…

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