I'm Back

To my small handful of loyal followers....thanks for continuing to encourage me to get back to this despite my protracted absence. Four years ago, almost to the day, I talked to my dad about this blog - he had just read a draft of what would be my newest entry and he was so encouraging and excited. I had no way of knowing that just hours after I published that post on June 20th 2012, both my parents would be dead - killed at 11:00 in the morning by a teenager high on synthetic marijuana who had been out smoking and driving since the night before. Somehow, the writing became so difficult after that for me and until now I have been unable to take it on, but all this time my inner wonk remained angry and perplexed by the ever increasing rates of autoimmune diseases, allergies, learning disabilities, cancers, autism. Although not writing, I have been reading and researching voraciously (someday I will have to get back to fiction) and it has led me to some unusual - and very unconformable - places. Places that have often left me angry, frustrated and depressed. Some of the things I have to share you've probably heard bits of here and there and some may make you think I've gone a little off. Please don't jump to conclusions - stick with me and I will try to share what I've learned....

In February of 2010, I sat in the cavernous Barnes and Noble in Bethesda, MD. Author Judith Warner had one of her first readings for her new book We’ve Got Issues: Children and Parents in the Age of Medication. I was one of the mothers she had interviewed for the book. A mother whose kids had issues – a mother in the minority. And yet, as I looked around at the packed room, I wondered. As Judy began to talk about Sensory Processing Disorders I expected her to spend time explaining what it was. Twelve short years earlier, when I figured out that’s part of what plagued my kids, doctors didn’t even accept it as a legitimate diagnosis. I had to explain it to everyone – doctors, educators, family members, therapists. But, as Judy talked, all the moms around me nodded knowingly. They all had kids with Sensory Issues – what the heck was going on?!?

I am late to this party – this understanding that vaccines are ruining our children’s health and well-being - which I find a little ironic since the 2 oldest of my 3 vaccine injured children were born in those first years after the Vaccine Court Legislation passed in 1986 and the vaccine schedule took off. For years and years I believed our doctors and thought our struggles with colic, chronic ear infections, sensory integration dysfunction, language delays, motor delays, auditory processing disorder, learning issues, ADHD, allergies, and wrenching gut issues were unique to our family and therefore genetic – some horrible melding of our DNA that consigned our kids – and us as parents - to endless struggles for treatment, therapy and accommodations.

Recently my husband and I watched the documentary Vaxxed: From Cover- Up to Catastrophe about the CDC whistleblower and despite all our struggles over the past 27 years our first words to each other when we sat down in the car after the movie – “We are so lucky….it all could have been so much worse.” Which if you know our story is saying A LOT. (More on that later). Our path has been difficult, but it did not include autism.

Since seeing the movie I have spent a great deal of time reflecting on a number of things. How I missed the connection to our children’s health problems and disabilities to their vaccination. How I have traveled in such a short time from an extreme pro-vaccination stance – I totally bought into the Swine Flu “Pandemic” of 2009 and marched my entire extended family to get vaccinated and as recently as 2013 I insisted on annual flu vaccines for all to “protect” a family member fighting cancer – to my current realization that vaccines are neither safe nor effective.

That’s not to say I didn’t know SOMETHING was up. In fact, as I look back over these 27 years there are so many moments like the one when I was sitting in the Barnes and Noble, when it became clear to me that something was very, very wrong – not just with my kids, but many kids. The clarity of some of those moments is startling and brings such sadness…..

My oldest was born in 1989, when, unbeknownst to me, the vaccine schedule was exploding. (Even if I had, it wouldn’t have mattered – like so many I believed in my doctor and the “science”). I now know that 1989 is seen as the "gateway year"  when the onslaught of learning disabilities; ADHD, allergies, autoimmune disease and autism began. Like many autism stories I have since read or listened to, our son was born healthy with great Apgar scores, but unlike in regressive autism or seizure disorders, his vaccine damage was slow and hard to see. It started with the diarrhea and the horrible diaper rash – after his 4 month shots I think. My husband and I were idealistic Policy Analysts at the Environmental Protection Agency and we started out with a determination to use cloth diapers – it was not to be – his diarrhea and bloody diaper rash demanded disposables.

Despite being precocious and very verbal (thank goodness) our son was late to walk. And when he entered EPA daycare at 18 months we began to get the notes and requests for meetings that would be the hallmark of all school years to come – his teachers had never had a child like him. He was bright, but liked to spend a lot of time alone or with his teachers – he was not interested in his peers. He was very sensitive to textures and his clothes, hated loud noises, had poor impulse control….and the meltdowns….. I distinctly remember my sobbing after a meeting with his preschool teacher when he was 4 – he was so different, so difficult, gifted in some ways – yes - but she told us to temper our life expectations for him.

There were many of those. His first grade teacher who in desperation sent him to the principal’s office one afternoon because he was one of 4 (FOUR!) boys with serious issues in her class of 20 – he would wind up spending most of the remainder of the year and a good part of 2^nd grade hanging out with the principal – who adored him, thank goodness. The 3^rd grade (veteran) teacher who told me (actually screamed at me) at our first meeting that his behavior made her want to jump out the window and run away - in 25 years she had never had a kid like him.

Being a Mom, of course I wanted answers. In those pre-internet days it was not easy. But somewhere in there, with the help of other mothers looking for answers I figured out the sensory integration disorder, auditory defensiveness, auditory processing, ADHD. We found a Physical Therapist who recognized the disorders. We got into a school for kids with issues – a school that was gaining students with issues EVERY YEAR ……. and all around us family and friends’ children were acquiring diagnoses – learning disabilities, ADHD, severe allergies, asthma, autoimmune diseases – you name it – and autism. 

At first I marveled at the wonderfulness of the new awareness! The better diagnoses! The acceptance!  The therapies! So grateful! And then, as the numbers all around us multiplied, it started to scare me....what the heck was going on?!? The Policy Analyst (and proud bureaucrat) in me was alarmed - surely someone was feverishly researching this - the CDC? NIH? Yet, year after year - nothing. My Inner Wonk was getting angrier...as the numbers got scarier and scarier - 1 in 150, 1 in 100, 1 in 68 - where there should be outrage and alarm, there was mostly silence.....

(Next, our daughter's story)