I was thinking about a friend last Thursday. Out of the blue, she texted me on Friday. Wanting to check in on Ronan and to offer a suggestion that may help him, I was touched that she reached out. With how busy I’ve been, I haven’t had a chance to talk to her yet. Her son is leaps and bounds ahead of Ronan and inching closer and closer to recovery, so I look forward to hearing more about what she has to say. I’ve liked other things she’s shared in the past, especially a blog she wrote called Backwards Day. If you haven’t read it, I’d encourage you to take a few minutes to do that. I bawled like a baby the first time I saw it. I cried rereading it again last week.
I’ve been thinking about that blog all week and how backwards some of life has been. I had no intention of watching my child’s health and development spiral backwards, but that’s what happened when Ronan regressed. Before I knew how that happened, I went back to look at events that I documented on our family calendar – to the well-child appointment date compared to the date when seizures started. I’ve gone back in time to pore over the pages of our family photo album – to a baby picture where Ronan was smiling and interactive to the one that shows a droopy, expressionless gaze. I’ve found myself slowly flipping through Ronan’s baby book to look back at certain pages – to the specific page where I’d started writing down the dates of milestones that Ronan achieved to the blank lines showing where those milestones abruptly stopped. As painful as it was to go backward and to look for clues, I found what I was looking for and successfully connected the dots to Ronan’s vaccine injury.
I don’t do it as often as I used to, but over the years as I’ve tried to make sense of things, I’ve had to force myself to go backwards – to replay conversations I’ve long forgotten, to revisit actions I wished I’d never taken, and to relive Ronan’s vaccine reactions that I now know how to avoid. Some people say I shouldn’t, but in certain circumstances, I think it was wise to go backward. It’s then that I could plainly see what went wrong and when. I could also see where time and Ronan’s development stood completely still. Not wanting to continue that trend, I used past experiences to shape a new path – one that I’d hoped would catapult me and Ronan forward.
I try to go forward and do so always hoping, praying and believing that progress is just around the corner. But, some days, progress is nowhere to be found. Instead of tippy toeing toward more typical behavior and accomplishing those milestones that Ronan left behind, it feels like he and I are either at a standstill or worse that we are actually physically spiraling backwards again. Ronan is less aware of how far behind he is, but a setback, an illness, a rash of seizures like he had on Tuesday, or a returned fixation of 30-seconds of a Baby Einstein song played a minimum of 200 times a day can really do a number on me.
Setbacks come and go. The ones that Ronan goes through take a toll on him, and they suck the life out of me. The first ones started so many years ago when Ronan was vaccine injured. I didn’t know to call it vaccine injury at the time though. Not until after I retraced my steps did I know to call it that. It was then that I also learned just how backwards my thought process and my past actions were.
I learned about vaccines after Ronan was vaccinated.
I learned about vaccine adverse events after Ronan had them.
I learned about vaccine exemptions after Ronan was fully vaccinated.
I learned that I had the right to question vaccines and to decline them after I was bullied into them.
I learned about vaccine safety studies and how they don’t exist after questioning why too many vaccines too soon.
Then, I learned about the vaccine-autism connection but only after Ronan regressed.
Each time I went backwards, I realized how much I didn’t know. I found myself scrambling trying to catch up on the basics. The basics were so simple, but things were already complicated. Had I thought to go back to learn the basics before opting for vaccines, I would’ve taken time to study the body and to review the science behind the immune system. That would’ve lead me to reading about diseases and viruses. That would’ve introduced me to the ins and outs of vaccinations. Taking time to read about vaccinations would certainly have been eye opening. I can’t say what I’d have done with that information – if I’d rethink vaccines or not – because, as much as I’d like to, I can’t go back in time to do that.
Of course, I can never go back in time. I know that. The past is the past. There’s no way to change it. But there’s a way for others to avoid what many of us did not. Knowing what I know now, I know that I’d do things a bit differently, and I tell other parents exactly that. I let them know that…
-had I understood the basics, I’m sure I could have avoided how complex my child’s situation currently is.
-had I known to read the vaccine package insert and not just the Vaccine Information Sheet (VIS) before I walked into a well-child visit, I’m sure I would’ve been more informed and could’ve been a better advocate for my child.
-had I also thought to look up what the current vaccine law was in my state and realized that “school shots” are a misnomer and that I had the right to use an exemption, I wouldn’t have felt coerced and gone against my mother’s instinct.
Thankfully, other parents listen and do what I did not. They hear and see the results of my child’s vaccine injury. They recognize the frustrations that come with his severe regressive non-verbal autism. They see where my son is today and don’t want that for themselves. They can imagine for their own child – that if this (vaccine, antibiotic overuse, unnecessary medical intervention, etc.), then that (autism, asthma, allergies, attention issues, etc.). They use that knowledge to their advantage and confidently take a different parenting path. Leading off with their best foot forward, they won’t have to go backwards poring over medical files, or reviewing shot records, or scanning the family calendar to pinpoint which day it was that their child’s development stood still.
It’s not a bad idea to every now and then stop, reflect, and go backwards. I’ve done that so many times over the last few years. Some days, I have to go backwards – back to a medical file to look for a date; back to the notes I took while researching a potential therapy that we were not ready to pursue; back to the pages of a medical book to review a disease, a medical condition, or a treatment plan. Going back can be helpful in some instances, and the next time I plan on doing that, I find myself feeling excited.
The next time I plan on talking about the past and what happened to my son, I’ll be talking to my friend who wrote that Backwards Day blog. While I could be very discouraged and even jealous that my son is going in the opposite direction than her son is, I’m not discouraged or jealous. I’m hopeful. She’s pulled her child out of the horrors of the past and has envisioned a better future for my son than the present pain he’s in. So, back I go once more. To the beginning. To when I say if I could go back to the time to when I didn’t know what I should have. To when I should’ve questioned but didn’t. To when my mother’s instinct screamed NO! but I sheepishly said yes. I’m looking forward to finding out how my friend beat the odds and how her son got ahead. I’d love for nothing more than for Ronan to finally get ahead, too.
Cathy Jameson is a Contributing Editor for Age of Autism.