autism
An inspirational reminder of the potential of disabled children
Last week marked the end of another successful school year for my children. It’s hard to believe we are already in to our summer vacation. Having my family around 24-7 and enjoying endless warm, sunny days has thrown a bit of a wrinkle into my writing schedule. I can see that I am going to have to be a bit more disciplined in carving out time to write and share.
I do not have hands-on experience with autism, although I advocate endlessly for families who have concerns regarding autism and the possible link to vaccines. It is not a world I live in, but I have many friends who are raising amazing children who have autism or are on the spectrum. A very dear friend and colleague of mine, who lives in Virginia, has been quite an inspiration to me in my work. Her son, Sam, has profound autism. She faces a daily, on-going struggle to raise Sam and develop his full potential. Technology has allowed me to form strong bonds with many people, like Vicky, but does limit my ability to interact with their families and their lives. I have never met Sam, but I know much about him.
One day Sam told his Mother that Hotel California was his favorite song. He had apparently heard it on the radio. After hearing 3-4 more times, he sat down at his piano and played a nearly flawless rendition of the entire song. Whether you are raising a child with disabilities or not, you must watch Sam’s performance…you will be moved by the genius that is within this boy who, in many ways, is locked away from the world.
Here is what Vicky sent me, including a link that will allow you to watch Sam’s moving performance.:
Click here for the Age of Autism story and clips related to Sam’s
outstanding performance before a large noisy crowd at the Autism One
conference in Chicago on Saturday, May 23rd. This was his national
debut and there were at least 500 parents and professionals in the
audience and he was a calm and composed as can be.The link also goes to an essay that I wrote about one of the songs
that Sam sang, U2’s, Sunday Bloody Sunday, a well-known political
protest song. As I expected, this song sent the crowd over the top.
The autism community - especially those of us whose children were just
fine until they got a set of vaccinations - are about as battle-weary
as can be. My essay, titled “How Long Do We Have To Sing This
Song” (a line from the song) reflects that state but it also states
that the vaccine-injured communities are still engaged and will
continue to fight for the basic human right to voluntary, informed
consent based on sound science and not ideology. As I gear up for my
next round of meetings with Federal officials to overhaul the broken
vaccine safety system, just know that Sam’s courage and songs like
Sunday Bloody Sunday are the fuel that keeps me going and renews my
commitment to make sure that the system protects the health of everyone.In case you missed the original piece that got this whole thing going
- here’s the Hotel California link that is referred to in the
introduction.Also, Sam has now been asked to play at two additional national
conferences: National Autism Association, Ft. Lauderdale, FL 11/12-15
and the 4th International National Vaccine Information Center
conference, Reston, VA 10/2-4.And, lastly, he’s been asked to host a monthly radio show on Autism
One radio - he want’s to call it “Jam With Sam”.
My thanks for Sam and Vicky for showing us that we can never underestimate the true potential that lies within our children with special needs and for reminding me why my work is important and necessary. Sam, you are a star!!
Autism: building a network for information and support
A lot of people have stumbled across my blog in the past months…the reasons that bring them here vary. Whatever the reason, I am hopeful that the information I share is helpful. One thing I have noticed is that many people who are drawn here are raising kids with autism. Today children are being diagnosed with autism at an alarming rate, 1 in 150…a level that has been described as epidemic.
Quincy is not autistic but the struggles and challenges that I face raising her are shared by anyone raising a child with disability. I am pleased that parents dealing with autism have found my site and I want to offer them as much assistance as possible in building their own support network. Since April is Autism Awareness Month it seems like the perfect time to share what I know.
My work in the field of vaccine safety has given me the opportunity to meet amazing people devoted to finding answers to this epidemic. We are joined by our concern that vaccines might be connected to autism and, in the case of Hannah Poling, we have learned that this concern is legitimate. Their focus isn’t just about vaccines, but support, education and advocacy for families, as well. So, if you haven’t already I would encourage you to check out the websites of the following organizations:
TACA Talk About Curing Autism (Families with Autism Helping Families with Autism)
Generation Rescue (autism is reversible)
Autism Speaks (its time to listen)
Safeminds (Sensible Action for Ending Mercury-Induced Neurological Disorders
Age of Autism (Daily Web Newspaper of the Autism Epidemic)
This is a list of the connections that I have to this world. Each of these groups has a different approach to their work, but they are all connected by their passion to bring understanding and answers to the questions surrounding autism. I know there are other worthy organizations and would encourage my readers share those they find helpful. These are simply the groups that I work with, that I have contacts with and that I respect. If you are raising a child with autism I hope this adds to your own personal support network.
Vaccine court, autism, and vaccine safety concerns
The current ruling from the vaccine court denying families of autistic children their right to compensation made headlines this week. Most of the headlines and comments show that most people really do not understand the “vaccine court” or the ruling. I understand the vaccine court very, very well. I want to share my perspective on this controversial topic.
The Vaccine Immunization Compensation Program (VICP) is the actual name for “vaccine court”. “Vaccine court” is a term created by the media. This program was created by Congress in the mid-80’s as a response to the overwhelming number of children injured by the DPT vaccine (mine being one of these children). The pharmaceutical companies told Congress that if they were at risk of being sued in civil court by these families they would simply stop making vaccines. With the overwhelming threat of a renewed emergence of infectious disease, Congress created the VICP to provide liability protection for pharmaceutical companies as well as compensation to families whose children suffered vaccine injury.
The court is not really a court…it is a system designed in which the government is represented by a league of Department of Justice attorney’s, who are paid regularly and who have full access to expert witnesses. The judges aren’t judges at all, but Special Masters who preside over the case. Any family making a claim must have their own counsel (referred to as petitioners and not plaintiffs as in a regular court system). Their counsel and their expenses are not paid immediately, but sometimes several years after the outcome of the case is decided.
One significant difference to this Program versus the civil court is that a ruling in favor of the petitioners is determined by a preponderance of the evidence (or, as attorney’s would say it’s 50% and a feather). The families only have to show that it was more likely than not that the vaccine caused the injury. This is a much looser standard than in civil court.
So, that is the VICP 101. Congresses intent with this program was two-fold. As I mentioned earlier to provide liability protection to pharmaceutical companies. The other goal was to provide quick, generous compensation to injured children. It was not intended to be the scientific proving ground for every single vaccine event. That is what clinical trials and scientific studies are for. It is not to be a political arena that uses injured children as pawns in a game to shield the government or the manufacturers from taking responsibility for inadequate research and science.
The ruling was a sad day for many. I, like many, believe that vaccines have caused a great deal of harm. I do not know the science well enough to explain this, but I believe parents who tell me that one day their children were fine, they got vaccinated and the next day they were sick. It happened to Quincy (this has not been disputed) and it happens all the time. These families struggle to raise their children and endure immense medical costs. They need help. They do not need a big, public and political battle that protects the greedy and the corrupt.
Parents aren’t stupid. We are smart enough to know when we’ve been played. The government and the pharmaceutical companies took care of themselves and covered their asses while those with the least amount of political power, money or influence…every day folks like you and I…just got hung out to dry. This shouldn’t have been about making a scientific statement about vaccines and autism…everyone on all sides of this debate are a long, long way from being able to do that, despite what they might tell you. This should have been about deciding whether it was “more likely than not” that the vaccines caused some neurological injury to these kids. The system is so broken that they couldn’t even get to the heart of the matter.
I know so many of the players in this drama…program directors at HHS and CDC, DOJ attorneys, Special Masters. Individually most are all good people, but collectively they disappointed me last week. I also know the players for the families, the attorneys who have been working on these cases for nearly seven years without being paid and the families who so desperately need help raising their children and my heart breaks for them.
If the government and the pharmaceutical companies think this issue has been put to rest, they are sadly mistaken. Bad rulings like the ones last week only fuel the flames of distrust among the public. Families are asking for answers to the questions about whether vaccines are really keeping our communities safe or whether they are the reason why we are raising the sickest generation of children in history. Until the government is willing to conduct independent research that is not influenced or funded by the pharmaceutical companies and their deep, powerful pockets, I am afraid we will never know.
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National Vaccine Information Center (NVIC)
