By Cathy Jameson
The 2013 AutismOne conference is now but a memory. For those in attendance, it was no doubt a moving experience. Several people have already blogged about what they saw, who they spoke to and how it relates to their child’s journey. Being able to catch up on the AO comings and goings is much appreciated. Since I remain in constant motion the minute I step foot in the hotel to the moment I get on a plane heading home, I tend to miss some of the lectures and events.
Despite how my own schedule filled up while in Chicago, the event I made sure to attend—and what I think was the most important that occurred last weekend—was the Congressional panel. I got to the room early to make sure I could get a seat in the audience.
Scheduled to sit on the panel were four U. S. Congressmen. Rep. Dan Burton (R-IN), past Chairman of the Oversight Government Reform Committee, introduced hearings on Childhood Vaccines and Autism in 2000. His efforts to get specific questions on vaccines answered date back to before 2000 after his grandson became ill from his childhood vaccines. Rep. Dave Weldon (R-FL), now retired from politics, was also on the original committee with Rep. Burton. Rep. Bill Posey (R-FL) and Darrell Issa (R-CA),both new to the autism scene, were part of the November 29, 2012 Autism Hearing.
At that hearing, Rep. Issa promised that the committee will stay involved, and if there was further need, have more hearings about autism. Also vocal about his commitment to help us was Rep. Posey. Keeping true to his word, and along with Rep. Carolyn Maloney (D-NY), who was also present at the 2012 hearing, Rep. Posey has a bill before the House called H.R. 1757, The Vaccine Safety Study Act. It is a monumental bill that asks the government finally to conduct an unbiased vaccinated vs. unvaccinated study, a request that has been ignored for far too long. I was anxious to hear more.
I hoped one of the Representatives on the panel would give us a follow up of the hearing. To my knowledge, we haven’t heard much of anything from the committee. I don’t believe I’ve seen any updates about the reports that Drs. Boyle and Guttmacher were asked to supply after being grilled throughout their testimonies. Did they answer the questions they were asked about autism, vaccines and vaccine safety? It was comical yet terribly absurd that during the hearing, both doctors hemmed and hawed about statistics and studies on autism and vaccines—information that many an autism parent can cite from memory!
Boyle, representing the CDC both in 2012 and way back in 2000 when the original Childhood Vaccines and Autism Hearing started, doesn’t seem to realize how her continued silence and question dodging has contributed to why so many children are sick.
Guttmacher, representing the NIH, had little to offer in November as well. Sadly, both of these “expert” witness testimonies, and their past actions, add miles to the darkened rabbit hole our community has felt trapped in for years.
Something that has stayed in my thoughts after walking away from the November hearing was part of Rep. Issa’s opening remarks. He said that we should “…keep banging the drum…” and to “…keep banging louder and louder…” As long as it’s not us beating our heads into a wall, we should bang loudly together. We have to until the autism epidemic is no more.
As expected, the Congressional panel drew a large number of conference goers. After being introduced by Canary Party Chairman Mark Blaxill, Drs. Andrew Wakefield and Arthur Krigsman presented plaques of appreciation to the four distinguished gentleman. While highlighting the Congressmen’s action and their efforts about the growing autism epidemic, this statement boldly got the Congressmen’s attention. Facing the audience, which numbered about 1,500, they were told, "This is the beast, and you're facing them. For every person here, there are 10,000 who could not make it because they are home taking care of their children." 10,000. At least that many!
I thought of all of my friends who couldn’t be there who were part of that number. Sitting up straighter in my chair, I pictured the children who lost their voices and their abilities just as my son did. Promising to always do as much as I can for Ronan and those other children, I looked at the crowd and joined the rousing applause as it spread across the room.
After the introductions, Rep. Burton, now six months out from his swan song encouraged those of us still in the thick of things. Keep at. Go after the pharmaceutical companies. Breathe down their necks. Get the government to do their job. Yes, it’s going to take some time. Of course it’ll take lots of work, but do it. And do it with a smile.
While sitting in the room with those highly respected politicians, I cheered along with the crowd after the pep talk. I clapped as Rep. Burton gave me a laundry list of things I needed to do: get more attention, go after those who ignore us, keep at it even though it feels fruitless and smile all the while I’m doing it. But, when I got back to my hotel room later that night, I felt a huge letdown from the day’s events.
Sure these men made a lot of noise with us. Yes, they appeared to be cheering alongside us. And by golly, it seemed like we were actually making waves in the political sector. But, then, in the same breath it felt like I was standing still, frozen in time watching every single one of our children get sick all over again. Even with some of these Congressmen on our side, will we ever do what we’ve set out to do with regard to the vaccine program and with our efforts to eliminate the debilitating autism that grips so many of our children? The rush I felt earlier from those speeches was gone. Deflated, my usually hopeful thoughts were nowhere to be found.
It was at this point that I said Rep. Burton’s words out loud, “Do it with a smile.” The words haunted me. I can’t smile a sincere smile when just days before the conference another young mother cried out help. When another vaccine reaction took effect. When another baby got sick after their one-year-old check up. When the doctor’s response was to just give the baby more Tylenol. None of that should have happened! But to this day, and to people I personally know, babies are still being injured by unsafe vaccines and the over-inflated vaccine schedule.
Smile. It’s a nice gesture, but a smile isn’t going to do a blessed thing. And it certainly won’t bring back those who get hurt or die from a vaccine injury.
Stay Calm and Fight On
The Representatives are great at motivating. They do that very well. But with all due respect, sirs, I may smile, but it will be through gritted teeth. We have no time for smiling. Lives are at stake! We’ve fought for justice. We’ve marched in our own towns and up and down the streets of Washington, D.C. We’ve asked for help over and over again. What can we do that hasn’t been done already?
We need answers, the truth and appropriate care for our children. We need people who say they will help to actually help. We need all of that. We need more than that. And quickly before another generation of children is affected.
Playing the nice guy role went out the window the second my son was vaccine injured. Since his injury, I joined too many other parents whose children were also severely damaged. Our children were used. We were duped. And all of us have been tossed aside like discarded trash on the side of the road. Our futures have been changed forever, and some were not changed for the best. To continue to fight for our children while smiling through the pain, the endless suffering and the ridiculous bureaucracy is an insult. I understand completely that some things take time, but in the time the original hearings were recorded, thousands more were vaccine injured unnecessarily. Thousands before me and who knows how many after me. It’s absolutely tragic.
Many of us have picked up where the government left off. And, like last week’s message, once again it’s the parents who’ve been tasked again with the impossible: move mountains that no one else seems to see.
Whatever it takes, and for however long, I’m sure we’ll do something. We’ll do it every day if we have to. We’ll do it because we are survivors of the greatest disaster of modern medicine.
A Simple Homecoming
Coming home after the AutismOne conference gave me mixed feelings. On the one hand I felt rejuvenated and ready to finish working on goals I made for Ronan. But then, on the other hand I thought how on earth was I going to do it all? There is SO much I have yet to do.
Each year there is a sort of “high” that carries me home. It lingers for a few days after the conference, and I ride it for as long as I can. I remember the rush of seeing the people who inspired me—my favorite warriors and Thinkers, the autism “celebs” and my personal heroes. I recall the warm embrace of the hugs I got from those who offer me endless support for Ronan. I hold on tightly to those hugs knowing that when we all return to our families at the end of the weekend, many of us would still feel the weight of the world on our shoulders.
Even though I’d love to stay just a little bit longer in Chicago, being greeted by Ronan upon my return home was the best part of my trip. He instantly reminded me of why I left in the first place and why I my return home was so important.
That smile. HIS smile. Ronan is the only motivation I need. His smile may not take down big pharma, or right the wrongs done unto him, but it helps keep me focused. Because of him, because of what Ronan created in me and how he makes me smile, I do promise to carry on.
Cathy Jameson is a Contributing Editor for Age of Autism.