Age of Autism Weekly Wrap: Dearly Departed
One in 68…When “Better Diagnosing” is Really “Over-diagnosing”

Tell Your (Autism) Story

Autism Reality
By Cathy Jameson

I came across a headline last week that caught my eye.  From a magazine that I no longer subscribe to, but happened to get an email from in my spam folder, the headline said, Tell Us Your Story—2017 Neuro Film Festival Now Accepting Submissions.” 

We know you have a story to tell … and we want to hear it!


  Neuro Film Festival

Even with how many times I’ve told it over the years, telling our story isn’t an easy task.  It comes with admitting that I did things the wrong way.  It comes with reliving a painful past. 

Is [your story] about yourself, or a loved one?

My story is about a very much loved son, Ronan. In sharing his story, it requires sharing intimate details of a decisions that ended up hurting him.  Despite all that, I tell our story whenever I can. 

Do you want to help raise awareness of and funding for critical brain disease research?

As painful as it would be to share it again, I’d love nothing more than for the video judges from the contest’s sponsor, the American Association of Neurology, to know exactly what happened to my typically developing child and the neurological damage he has suffered.

And while brain disease research is critical, my experience has been that Ronan is not on mainstream’s research radar because of the controversy surrounding how his brain injury occurred.

… your video must include one of the four "Neuroscience Is..." phrases…

  • "Neuroscience Is... Cool." (reserved for kids 13-17)
  • "Neuroscience Is... Rewarding."
  • "Neuroscience Is... Essential."
  • "Neuroscience Is... Critical."

Though Ronan’s age qualifies him for the kid category, nothing about Ronan’s vaccine injury story is cool or rewarding, so that narrows the field of options. 

I think the AAN could be headed in the right direction stating that Neuroscience is Essential, but with how many pharmaceutical ads their magazine boasts, I hesitate to believe they are on the same page that I am.  That leaves just one category:  Neuroscience is Critical. 

Critical.  Yes.  That’s it.  It’s a perfect description, maybe not of neuroscience, but of Ronan’s needs, healthcare, and the constant supervision that he requires. 

Ronan’s lived with a dozen years of pain and frustration.  It’s critical that I reduce that pain and eliminate that frustration. 

Ronan’s lived with the loss of speech.  It’s critical that I use my voice, even when it trembles, to speak up for him. 

Ronan’s health has been compromised.  It’s critical that I advocate for him, not just at the doctor’s office, or at the legislative level, but within my family, my community, and my social networks as well. 

But, it’s intimidating to even think that I could capture in a short five-minute video all that happened to him in the last 14 years.  What parts of his story do I highlight?  Which parts do I leave out?  Will my submission make the cut if I dare say how Ronan went from typically developing to fully dependent on others?  I won’t know unless I actually submit a video. 

Should I enter this contest, I’d start out as I always do, “Ronan was a typically developing baby.  He was reaching his milestones until…until he wasn’t.”  With my voiceover, I’d share those happy baby photos of Ronan that I loved to share with family and friends.  While those are flashing on the screen, I’d then share the hopes and dreams I had for this first-born son of mine – that he’d be happy, healthy, and enjoy life like other kids do.  Then, because the film can only be a few minutes long, I’d start to weave in the parts of Ronan’s story that are so hard to tell – that post-vaccination I witnessed my child lose skills and cease to achieve milestones while he slowly, but steadily, tumbled onto the autism spectrum. 

I didn’t share photos of that time of Ronan’s life as readily as I shared his baby photos, but a few do exist.  The photos from that timeframe capture just how much a physical toll vaccine injury can place on a child.  The dramatic changes are undeniable and will surely help the judges understand just how critical it is for the vaccine injured to get the support they need.  As those photos go across the screen, I’d end the video updating the judges with where my son is today:  living with a vaccine injury that left him with seizures, with neurological delays, that took away his speech and destroyed his health…with the realization that none of that had to happen. 

I know it’s a long shot that anything I send to this group would be considered acceptable for their contest let alone the winner of the $1,000 prize.  But as I’ve said before, as painful as it is, we must tell our stories.  Even if it’s just one person who hears that story and who heeds our cries, it’s one more person informed and knowledgeable.  It’s one more person’s child saved. 

Since there’s still a few weeks left before the March 10th deadline,  I invite all our readers who have a story to share to please consider sharing a video entry.  If a picture is worth a thousand words, imagine just how much a video of our children would be worth. 

Cathy Jameson is a Contributing Editor for Age of Autism.

Comments

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Hera

Hi Barry
"Someday, at least some of the children from this generation are going to look us in the eye, and ask why in the hell we stood by and let this be done to them."

You are probably right. So the thing is, I believe you have to do what you can do. Take breaks when you need to, and then, tell your story again. At least that way you did do something. :Lots of people doing little things can help create change.

Vaxxed is a great movie; but most of the people who chose to see it probably already were questioning vaccines, and most of the USA still hasn't seen it. People may not be "rioting in the streets" but if they are quietly saying to their doctor; hey my kid had seizures after that last vaccine.I want you to do your job as a medical professional and protect him, then things are still changing.

More and more people are starting to acknowledge that vaccine injury exists. In some ways the vaccine industry has done it to themselves. The families of the gardasil girls are a large outspoken group that the vaccine industry has created.
And pediatricians seem to be unaware that in refusing to treat or help vaccine injured people, they are arguing themselves out of a job. Why pay to go to a pediatrician who will force vaccines regardless of a child's health? Vaccines are cheaper at Walgreens if that is the only practical service they can provide. When this continues happening, then pediatricians will have to start to provide helpful medical services, or loose their clientele.
Things do change. And doing what you can do is a lot better than doing nothing at all.
I am also concerned about bee deaths from neonic pesticides. So; I can't solve the whole problem, but I can buy plants that don't have pesticides in them, and let the dandelions grow in my lawn,.
The "hundred monkeys" theory suggests that eventually after sufficient people come to realize or learn something, then society as a whole changes. While some question how quickly the change happens, everyone agrees that over time, more and more monkeys learned to do things differently.
Similarly, people also learn and change, even if slowly, when given sufficient information.

Barry

That's how I used to feel too Hera, but I can honesty say that I no longer believe in what you're saying.

If the world we live in really worked that way, then the documentary Vaxxed would have sent furious parents rioting into the streets. Are you aware of viewers reacting in this way, anywhere in the world that this film has been viewed ??

If the last 10 years have taught me anything, it's that people have to find their own way to the truth. And unfortunately for most of them, their path to the truth will be the same as ours, which is a vaccine injured child or grandchild of their own.

Someday, at least some of the children from this generation are going to look us in the eye, and ask why in the hell we stood by and let this be done to them.

As well they should.

Hera

Barry;
"why bother?"
because if you don't bother, nothing changes.
Will everything we say or do change someones mind, or protect someones child, or inform someone about the existence of vaccine injury? No. But if we do nothing, we can guarantee no one will ever be informed.
And lots of people truly have no idea about the existence of vaccine injury, the CDC table injuries, the existence of the vaccine court.
Even if only one or two people seeing the videos etc make the connection, we are adding to the information available. And maybe when a person who kind of paid attention to a video, sees a child start to go under, they will say something, ask the right questions.
Sometimes people hold information in the back of their heads, and revisit it when other events bring it to mind.You never know if the information you give that gets ignored today, will end up helping someone down the line.

Barry

Why bother?

I've been telling my son's story here for years. And in that time, the Editor and Editor-at-Large for this website site.... collaborated on a book that supposedly provides a guide for safely vaccinating a child. As if that was even possible.

If telling my son's story cant make a difference in the minds of these two people, what's the point of telling it to people who still think that I'm just one of those parents, who cant deal with the hand that life has dealt to me ??

As much as I hate to admit it, the truth about vaccine injury is going to remain within the realm conspiracy theory. Until the volume of vaccine injured children, is so great that it brings the economy to its knees.

Because money is all that most people really give a shit about.

go Trump

The major problems this New Years Day seems to be the Russians that the president just kicked out and of course omg Zika ! ... Only the CDC can save us from this one...

I just wonder how many from the CDC are presently taking steps to leave the United States ? It would be the next, logical. cowardly step.

I believe a number of things will change by the end of this month.

Ted Kuntz

I submitted my son's story of vaccine injury for the "To Vaccinate or Not" theme. My understanding is it is going ahead. My story has been accepted. Will soon see how honest the inquiry actually was.

Angus Files

thanks Rebecca I wish we had started the AC Chelation years ago just started it this year and small gains which is great.

I know many with similar stories such as Cathy`s and lots worse to ours and it goes without saying we just take a look at our kids diagnosis's and we as parents know that we are one.

On a lighter note as one of my nice neighbours referred to a local busy body( do gooder pain in the neck) as a "Fanakapan" - well as you do Google here I come.... I looked it up and it has various origins from endearment of little ones with a lot of worry, to a person who spins to many plates,to somebody who is a snob so the neighbours refer to her as Mrs Fanakapan and then to the Gracie Fields song Fred Fanakapan who is a prospective boyfriend is overawed and shocked into silence and never to be seen again after this family friendly reception he receives..

https://www.youtube.com/watch?v=cU35RGuxvwM

I am sure there are plenty Pharma Phanakapan`s a lot more worried now, than this time last year the plate spinning cant go on..


Wishing all a Happy New Year

2017 THE YEAR OF ENLIGHTENMENT

MMRIP

Rebecca Lee

I read this newsletter religiously every morning, so I have heard a lot about Ronan. I'm sure you have done loads of biomed interventions to help him...but clearly not AC chelation.
Do investigate what we do:
Fight Autism and Win Detoxing Kids Facebook group
Www.cutlersuccessstories.weebly.com
After being a moderator on the Facebook group for several years, I have seen hundreds of hair tests and listened to thousands of kids' stories and chelating for mercury with frequent low dose oral chelation is all you need to do to completely recover 50% of these kids, greatly improve another 25%. The other 25%it wasn't mercury and you have to figure out something else.

Ottoschnaut

Hi, supposedly this journal's next issue theme is "To Vaccinate or Not," they solicited submissions asking parents to "tell their stories" as well....have not seen the issue, perhaps they were shut down on this one...
https://www.press.jhu.edu/journals/narrative_inquiry_in_bioethics/

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