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.”
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.