Sunday, Bloody Sunday

Make no mistake, we are at war.  Those of us living with autism everyday, and those of us whohave to fight school districts, and insurance companies and govenrmental denials, careless bystanders and an apathetic public at large, every day is a struggle and the end is nowhere in sight.  Yet sometimes, hunkered down in your foxholes, you hear about other warrior’s courage and it inspires you to keep fighting.  This is one of those stories. (from Age of Autism)

How Long Must We Sing This Song?
Vicky Debold, PhD, RN

In 1983, the band U2 released an album titled War which includes Sunday Bloody Sunday, a song widely considered to be one of the most powerful political protest songs of all times.  For anyone who doesn’t know the song’s history, it captures the anguish of an observer who witnessed Northern Irish civil rights protesters being fired upon by the British army (lyrics below).

For those of us within the vaccine-injured communities who are fighting on behalf of our children for the basic human right to make voluntary, informed vaccination decisions that are based on sound science rather than ideology, it is a battle.  And it is personal.  Like the victims of the civil war described in Sunday Bloody Sunday, many lives have been lost, our families torn apart, and everyday there’s unbelievable news where indeed, “fact” is fiction and TV becomes reality.

For anyone fortunate enough to be able to attend this weekend’s outstanding Autism One conference and Saturday night’s dinner, they heard my 11 year-old son, Sam, sing Sunday Bloody Sunday.

Sunday Bloody Sunday
U2, 1983

I can’t believe the news today
Oh, I can’t close my eyes and make it go away
How long…
How long must we sing this song?
How long? How long…

‘Cause tonight…we can be as one, tonight…

Broken bottles under children’s feet
Bodies strewn across the dead end streets
But I won’t heed the battle call
It puts my back up, puts my back up against the wall

Sunday, Bloody Sunday
Sunday, Bloody Sunday
Sunday, Bloody Sunday

And the battle’s just begun
There’s many lost but tell me who has won?
The trench is dug within our hearts
And mothers, children, brothers, sisters torn apart

Sunday, Bloody Sunday
Sunday, Bloody Sunday

How long, how long must we sing this song?
How long? How long?
‘Cause tonight…we can be as one
Tonight, tonight…

Sunday, Bloody Sunday
Sunday, Bloody Sunday

Wipe the tears from your eyes
Wipe your tears away
Oh, wipe your tears away
Oh, wipe your tears away
Oh, wipe your blood shot eyes

Sunday, Bloody Sunday
Sunday, Bloody Sunday

And its true we are immune when fact is fiction and TV reality
And today the millions cry
We eat and drink while tomorrow they die

The real battle yet begun to claim the victory Jesus won

Sunday, Bloody Sunday
Sunday, Bloody Sunday

Sam’s story is a common one these days.  He was a healthy, happy, normally developing baby until 15 months-of-age when he experienced a significant physical and social regression after receiving seven vaccines during his well-baby visit.  The following day, he was unable to stand up in his crib, seemed “dazed”, was ataxic and lost interest in walking which lasted for two months, developed chronic diarrhea and progressively lost his ability to speak and all interest in socializing with his family.

In hindsight, I think he suffered from vaccine-induced ADEM (HERE) but it wasn’t diagnosed or treated.  In 2000, at 3 years-of-age Sam was profoundly autistic, non-verbal and mostly disconnected from the world and his developmental pediatrician told me that he would never be able to go to school and would probably be institutionalized.  Even so, he consistently would come running any time he heard the Jeopardy theme song.  As a result, we started music therapy and that’s how he learned to play piano.  If you’re interested, here’s Dr. Wakefield’s intro and Sam’s first two songs (Hedwig’s Theme from Harry Potter and Hotel California):

http://www.youtube.com/watch?v=TQc-Wo6vJGk&feature=channel_page/

And here’s Sam’s closing, song, “Rhapsody in Blue” by George Gershwin.

http://www.youtube.com/watch?v=Hjry3fAzeuw&feature=channel_page/

Although I’m very proud of Sam’s courage and what he has achieved, I’m even prouder of the autism community and more broadly, the vaccine-injured communities.  Without the support, hard work and dedication of these communities, I doubt Sam would have delivered the amazing performance that he did.  I happen to think that there’s something rather poignant and ironic about an autistic child soulfully wailing, “I can’t close my eyes and make it go away.  How long must we sing this song? How long?”

In contrast to the song’s lyrics, the vaccine-injured community is heeding the battle call.  And it’s not just the autism community.  As a longtime volunteer for the National Vaccine Information Center (HERE) which has been fighting for vaccine risk awareness and informed consent for nearly three decades and answered thousands of calls from grief-stricken parents the world over including those of previously healthy teenaged girls who are devastated by Gardasil-induced injuries and death, I know that there are many more lining up to for fight for their rights.

And to all who either deny the existence of “broken bodies strewn across the dead end streets” or claim it is only a coincidence that individuals can be seriously harmed by vaccines — we know that this is not true.  These are people whom we love and their lives count.

If this issue is something you care about and would like to hear Sam sing Sunday Bloody Sunday, please come to Washington, DC on October 2–4, 2009 for the upcoming NVIC 4th International Public Conference on Vaccination (HERE).

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A Mothers Day Miracle

We took Ginger out Saturday to Skillin’s, the 133 year old family-owned nursery, loaded up the car and gardened all day.

But the highlight of the weekend was on Sunday when we were out for a drive and stopped in to see our new CSA farm in Wiscassett , Buckwheat Blossom Farm.  The first thing we noticed was that 4 chickens had gotten out beyond the fence and and were wandering around the other side of the street (talk about “free-range” chickens).  We pulled up beside them and told the boys “look at the chickens.”

Chandler stood up, leaned out the window and said:

Hewwo Chickens. How are you? My name is Chanwer. These are my friends, Webster, Mommy and Daddy.

Four sentences!  It was Chandler’s first single utterance of more than 10 words, and it’s also his first ever paragraph.

Mama couldn’t be prouder.   A true Mothers Day miracle.

Who will emerge as the best Autism candidate?

Check out what Obama said yesterday in Philadelphia:

“We’ve seen just a skyrocketing autism rate. Some people are suspicious that it’s connected to the vaccines. This person included. The science right now is inconclusive, but we have to research it.”
–Barack Obama, April 21, 2008

It’s about time the government took it’s job seriously.  Their first job is to protect its people from threats both outside and within (even when the threat is the govt or the president himself, I’m talking to you Georgie).

And to be fair, McCain weighed in on vaccine safety earlier:

“It’s indisputable that (autism) is on the rise among children, the question is what’s causing it. And we go back and forth and there’s strong evidence that indicates it’s got to do with a preservative in vaccines.”
–John McCain, Texas town hall meeting, February 29, 2008.

We need to be pressing the candidates for change (that we can believe in).  And lets all hope HC loses today in PA so we can focus on how we’re going to change the tide and corruption in the halls of govt, the media and the narrow-minded medical community concerning the causes and treatments of autism.

Happy World Autism Day!

Lot’s of coverage on CNN today. Some of it good. But let’s not raise awareness, let’s raise compassion.

A lot of people are aware of the existence of starving kids in Africa, but who is moved with compassion to do something about it?

We don’t need people to be aware that 1 in 150 kids has autism, we need people to have the courage and compassion to move heaven and earth to help our kids. (preach it!)