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Congressional Autism Hearing: Take Note

Posted Dec 01 2012 12:00am
Listen_to_me_by_rachellove147-d34d13d By Cathy Jameson

Psst, did you hear that? 

Congress talked about autism.  Not just any old autism, but the autism that has increased by 1,000%.  And that it has something to do with vaccines and not "better detecting".  The autism that has something to do with thimerosal.  The autism that can be treated with diet.  Oh, and the autism that has infiltrated Africa.  That same one that never existed on that continent until we, good old' US of A, shipped it over in the form of vaccines.  I know, I know!  It doesn't sound real, does it?  Even I couldn’t believe it. But I was there on Thursday, and I heard it. 

When I got a message that the Congressional Hearing on Autism was being scheduled, and that families were being encouraged to bring their children, I thought long and hard about attending.  Could I do it?  Could I jet to D.C. for the day?  Can I add something political to my busy life?  Should I go?  Could I leave everyone behind and go by myself?  Or with kids? I'd have to rearrange several appointments, figure out how I’d get there, factor in taking some of my children and secure a babysitter for those who weren’t, and pray that they had a normal day with no incidents while I was away.  Could I?  It was a lot to figure out. 

I do so much already, mostly solo with hubby on extended travel again, but was this something I should add to my schedule?  What if there was an emergency back home, or if Ronan had seizures at school again?  Do I have time, energy and back up plans for my back up plans to pull this off?  Should I? 

Why would I not!

Just thinking about coordinating a day in D.C. took an effort.  But the reasons why this Hearing was important were far greater and affects more than just me and my family.  The Hearing, this Hearing, the one that's taken over ten years to be scheduled?  It was important for everyone to be there, and I knew that I really should go if I could. 

If everything lined up, if I could pull it off, I could get there.  And I wanted my older, typical kids to be there as well.  They are beyond being aware of autism and have been ready and waiting for years for other people to finally get up and do something about the type of autism we hoped was going to be discussed, the kind that their brother has.

Oh, yeah, we'd be there.  

I coordinated as much as I could and got my kids' schedules organized and finalized the day before the Hearing. Ronan's big sister and typical brother, Little Buddy, we're excited to go.  They didn't know too much about what the Hearing would cover, so I told Little Buddy that it was a big meeting about autism and that Mommy wanted to bring them too because we might learn something helpful for Ronan and of course later share with other families.  My daughter understands much of why I advocate and frequently asks to read whatever I am currently reading to keep up with the news.  She has a great understanding of how difficult some of these last years have been for our family and why we’ve had to make the decisions we have made for Ronan’s health, his care and his schooling. I am proud of how much she knows and what she has shared (and discusses in depth) with her classmates about autism.  Having two of Ronan’s siblings with me was important.  Not only was I grateful to have my kids in tow, but I was proud that they wanted to be there themselves.

D. C. or bust

I'll be totally honest, before I got to D.C. part of me thought our efforts for the day might be a waste, the testimonies full of fluff and the Representatives less than interested in autism.  I've heard about these types of meetings before and have watched government agencies and other autism advocacy groups say so much yet say absolutely nothing useful over and over again.  Was going live and in person going to make a difference when I have doubted these types of gatherings and our government’s responses for so long?  To say that I was completely caught off guard as the Hearing unfolded is an understatement.  

I couldn’t believe what was being said.  The questions directed toward the CDC and NIH doctors were ones I myself have asked for years now!  The same words, the same topics, the same facts and even the same doubts were being volleyed from the committee members to both Dr. Boyle and Dr. Guttmacher throughout their testimonies. 

Not only were the questions most impressive, but the Representatives were as well because it felt like they were actually representing! They shared stories of their constituents’ children.  They spoke of the same type of symptoms and sufferings what Ronan has had to handle and work through on a daily basis.  These politicians have not only met families like mine, they have listened to them and were offering their stories as evidence.   Each story sounded similar to Ronan’s and included a link somewhere in there with vaccines.  I was floored.

It gets better.

Put the brakes on

The information our community has been researching, writing, citing, quoting and begging to be addressed for years was being talked about in Congress. Out loud.  On record.  Under oath.  And for the entire world to see on live television. 

The Reps were intrigued, and at some points even infuriated at the lackadaisical responses the public “health” agencies were spitting out (or keeping mum about).  It royally irked some of the politicians as well as many of us in the audience.  That didn’t stop more pointed questions from being fired: 

Including questions peppered with the current 1 in 88 rates (and why so high?). 

Including questioning the reasons behind what has come of useless government-funded studies that have been conducted in the past (along with demanding the justification of those studies and the millions of dollars spent, or stolen, on those projects).

Including heated questions about why some vaccines still have thimerosal (while others do not) and why some states have higher autism rates than others (and how can that possibly be?).

After those questions, and a very lively discussion, Congress made a point of saying that what we have here in these United States is an epidemic: it’s an autism epidemic.  When asked if the doctors thought the same, I felt that the delay in their responses, and the vague and let-me-get-back-to-you-on-that reply, was answer enough.    

There were so many perfect opportunities for the Representatives to segue and remind and also reintroduce that very high, and rising, autism rate while reiterating the fact that autism most certainly is a crisis.  They see that just as plainly as many of us have for years. 

Congress has spoken.  Loud and clear.

Something is seriously wrong   

As announced at the beginning of the Hearings by the Chairman, every topic raised at the Hearings would be considered and no topic would be off limits. Topics like the amazingly high vaccine injury compensation fund (which is at $2.43 billion dollars, collected to reimburse individuals or families who have suffered vaccine injured or vaccine death).  That point, as well as when the Lily Rider and the Homeland Security Act were mentioned, as well as when the CDC’s former Poul Thorsen, who is also on the FBI’s Most Wanted list, was discussed—-all of it, to also include the many queries of vaccines on the vaccination schedule and how they directly relate to our infant mortality and morbidity rates (which are some of the worst rates across the globe)—-when all of that was raised, discussed, documented for the record and promised to be further investigated, was why it was worth the effort of mine to go to Washington, D.C.

The committee members were infuriated at the skyrocketing autism rates and with the inadequate responses the CDC and the NIH offered.  They have every right to be upset!  WE have every right to be upset!  The committee had done their homework and heard firsthand about this epidemic--and it’s come straight from the very people they represent--people like you, parents like me about children like Ronan!

It was liberating to hear what this group was asking and how they were so adamantly asking.  But, it was equally as frustrating as the discussions continued.  As the questions and answering period went on, it’s no surprise that perfectly logically questions being asked of the doctors about vaccines were dodged.  The Representatives continued to demand answers though.  They kept at it just as many of us have.  Truth be told, it was riveting.  As well as frustrating.  But, we’ve been assured that more questions will be asked, and more answers must be provided.

For the children

I have always hoped to one day get to an autism event in D.C. at the government level.  After listening to the testimonies and the questions and answers it made me think that I was no longer there to just say I went, but that I was witnessing history in the making.  I was watching an actual turning of the tide.  I could absolutely feel the shift happen.  And so did many of us present, including the friends I was sitting with and amongst in that room. 

Being able to bring my children who love and adore their brother, who only want for him to be able to talk to them and play with them, for them to be present for these jaw-dropping moments left me full of pride--pride for my children who have promised to look after a brother who they hope can one day catch up to them.

Ronan's siblings were sitting so patiently throughout this incredibly long day.  I thought how wonderful for them to be here to hear everything I and so many of us got to hear.  For them to know that everything we have questioned and researched for so many hours on our own and later discussed with our families and friends, and even strangers we encounter along the way, was promising. 

We personally came to make a stand for Ronan, for his needs and for a chance for him to someday to be able to do more than he’s capable of now.  We came also to bear witness for all the other children like Ronan whose families were unable to attend.  My children fully understood that, so it’s without surprise that even though incredibly great things were said in that room, Ronan’s little brother left me with the most meaningful quote of the day’s events. 

Good guys vs. bad guys

Backtrack a bit to the beginning of the Hearing to sometime within in the first hour as it got underway.  After my kids were settled into their seats, which were the last seats in the room before others were turned away to an overflow area, we were still unprepared for what was going to unfold. Right away I could tell it was going to be a long day.  My two children understood that, too, and promised to do their very best while we were there. 

Remember that I hadn’t told my children too much about the Hearing beyond that it was going to be about autism and that we should be there for it.  We were sitting in the very back of the room and had a hard time seeing the panel of politicians and had no view of those giving testimony.  The television monitors were helpful, but it was still not the best view.  We could still hear everything very clearly which I was grateful for, because as I’ve already shared a lot was said. A LOT. 

Early on it became very clear that these two kids of mine knew exactly what was going on, especially as the committee members grilled the doctors repeatedly on the topic of vaccines. Midway through questioning both of the doctors, Little Buddy looked at me and asked, “Mommy, which ones are the bad guys?”  It didn’t take long for my son to put two and two together.  You see, the autism that was being discussed at that point is the one his brother is affected by.  The one triggered by vaccines.  Little Buddy knows this because he too was injured by vaccines, not nearly to the degree that his big brother was, but enough that it made his early years challenging.  He remembers some of those challenges and the difficulties he had to overcome. Now that he’s healthier and older and very in tune with what happened to his brother because of Ronan’s vaccines, Little Buddy is passionate about vaccine safety.  He’s more knowledgeable about vaccine injury than some adults we run into.  Little Buddy’s a worrier, too, so for him to hear what was being said caused his ears to perk up even more so than other vaccine-autism discussions he’s heard.  He knows exactly what happened to Ronan which is why he is not afraid to ask people to be careful if they want to vaccinate. 

Little Buddy’s a really good listener when it comes to hearing the truth,too, and when something else is pawned off instead.  At one point, when the CDC’s Dr. Boyle glamorized a statement that vaccines have saved many, many lives, Little Buddy could take it no more.  The disappointment in his face spoke louder than words as he leaned toward me and whispered, "Mommy, vaccines don't save lives.  She lied.  Why would she say that they save lives when they don’t?"

Ronan's vaccines did the opposite of save his life, and Little Buddy knows this.  He still sees the negative effects of that vaccine injury – the loss of Ronan’s speech, the onset of the seizures Ronan suffers, the painstakingly slow skills Ronan works so hard to develop.  Little Buddy is just a little kid, but he’s figured out the cause and effect so many refuse to see or believe.  After the doctor’s disappointing statements, my son sat back in his chair clearly, definitely and unequivocally upset.  I'll even say he was a little bit hurt by it, too.

I could go on and on about the remainder of the day’s events and that second half of the hearing was just as riveting as the first, but I want to stop here and let my son’s reflection be the last thing you read of my account of the Hearing.  Our typical children are listening.  They are taking notes. They can quickly sniff out the good guys and the bad guys.  They can also identify a lie as its being uttered.  I don’t doubt that these children want to make those lies stop just as badly as we do. 

Most children know right from wrong.  Our typical children most definitely do.  They know when something or someone is good.  They also know when something or someone is bad.  If a typical eight-year-old child, who is sitting in the back row of an crowded, long-overdue Hearing on autism can instantly understand that something being said is far from the truth, there’s no denying that the discussions from Thursday aren’t over. They are a clear reminder that so much has yet to be done. 

Of course we will still face some serious road blocks and detours as the truth is revealed, and many people will continue to do everything they can to stop us in our tracks.  But I do believe our typical children will be watching right along with us and be more than ready to jump in for support.

As we look to the future and press Congress for more Hearings to continue the many conversations started on November 29th, please remember that more people are watching.  Our children will be watching like a hawk.  They will be listening.  They are motivated to do more.  Let’s make sure we continue the focus on how to make the changes that need to be made and to find ways to help each other.  Our efforts, and those that the siblings are ready to offer, should always be full of honesty and integrity. 

Every child involved in this epidemic, including and especially the typical siblings, needs to be valued.  Our typical children’s passion is as strong, if not stronger, than ours.  I know my children are ready for the next step and will walk the halls of Congress once more, and however many times after that.  I pray that they don’t have to wait too long for the next Hearing.  They’ve waited so long already, not just for the healing of their brother’s vaccine injury resulting in autism, but for justice for every child affected by the autism epidemic.

Cathy Jameson is a Contributing Editor for Age of Autism.

Posted by Age of Autism at December 02, 2012 at 5:45 AM in Cathy Jameson Permalink

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