The face a person makes when they learn that Ronan's "autism" really means that he was vaccine injured can be full of:
- a) bewilderment
e) all of the above
When the answer is e and it's all those responses at once, you know you're in for a good follow-up conversation. Thank you, new friend, for that convo, for asking a ton of questions about that "autism", and for some sympathy. And like you said, you don't know until you know...
You don't know how your kid (or you) will react to vaccines until your kid (or you) do react to vaccines. So know what your kid (or you) are getting into. Because once you vaccinate, you can't unvaccinate.
That was a message I shared with family and friends one day last week. Earlier that day, I had had 2 other conversations about Ronan and vaccines. The other 2 convos were with mainstream pediatric nurses. Both times, both nurses were sympathetic. Sympathy can be hard to come by, especially when vaccines come up, especially when they’re brought up by a mainstream medical person. When I politely decline a vaccine, sympathy is usually the last thing I’m offered. Things were different time.
The first nurse wanted to know if Ronan has he had a flu shot this season. I kept my answer short. “He had a reaction to that shot,” is all I said.
Without asking for specifics, without giving me any grief, and without giving me the look I’m so used to getting, she said that declining this year’s flu shot was perfectly understandable. After her quick and polite response, I added, “Yeah, we don’t opt for it anymore.” She agreed that after having a reaction to it, Ronan probably shouldn’t get it. I wanted to hug her.
The second nurse asked if Ronan’s immunizations were up-to-date. I said, “He had reactions to some, so…he’s all set on them now.” Without batting an eye, she said okay and moved on to the next question.
People are telling me that they feel like “the tide is turning” meaning that we, parents of vaccine injured children, are actually being heard. The three times I was able to safely share Ronan’s story last week – that he’d been vaccine injured and that this “autism” is not straight up autism but is the result of environmental exposure – I was heard. Being heard was thrilling. So was being told by a mainstream doctor that what I am currently doing for Ronan was to be commended.
“You’re fabulous. You have so many supports in place for Ronan. You’ve done a lot for him already…”
I blushed and thanked him. I have done a lot, and I will continue to do whatever I can for my son. It hasn’t been easy providing what we’ve been able to, but hard work is paying off. One baby step at a time, Ronan’s made progress. I’ve made progress, too. So has our family. Together, we’re managing a disorder that is full of challenges. The challenges can be daily, but we’ve learned how to be patient and flexible. We’ve learned to work through the difficulties. We’ve learned to look past the disabilities that slow Ronan down so that we can focus on his abilities. When we concentrate on what he is able to do, life is much more positive. The doctor Ronan saw last week noted that, too.
“What can I help you do or get for Ronan? I can see that he’s happy and that you’ve established good opportunities for him, but I don’t want to overlook anything. Tell me your concerns, and let’s talk about what else we might be able to do for him.”
Hearing that he wanted to work with me and not against me was music to my ears. Many doctors we’ve been referred to in the past haven’t had that same attitude, so I welcomed being able to collaborate care with this new provider. Without skipping a beat, out spilled my thoughts, my concerns, and my hopes and dreams for Ronan. I don’t usually share as much as I did, especially with a first-time doc, but in order to make sure he saw the big picture and that Ronan’s autism was medical, I was as honest as I could be. He asked questions. I answered every single one of them. I had questions. He answered every single one of them. By the time the appointment was over, we discussed just about every medical issue Ronan has had, or could face, in his life. Needless to say, we went over the 45-minutes we were allotted for the appointment.
Feeling upbeat, I walked out of the exam room feeling accomplished. Since this was just the initial appointment, I pray that the next time we see this provider and his colleagues they stay on the same page with me. For now, the nurses demonstrated that they were caring, the doctor showed that he was open-minded, and the answer I supplied about the flu shot – that Ronan reacted to it, seemed perfectly acceptable. I’m keeping optimistic that we’ll continue to be welcomed with this group. Time will tell if we are.
Time will also tell if other people I run into will accept or reject what happened to my child. Talking about vaccines as openly as I have can get more than a little uncomfortable. But if I don’t take the opportunity and speak up, I do a disservice to Ronan. If I don’t brave the awkward stare, I lose out on planting a seed. If I don’t address the misinformation the media has shared about vaccines, I lose out on making a new friend who wants to know the truth about them. The new friend I made last week was genuinely interested in Ronan’s vaccine history. At the end of our conversation, I could tell she had more questions about him, about that “autism”, and about those vaccines. I’m thankful for her curiosity because she really didn’t know what she didn’t know until Ronan walked into her life. He’s taught me and our little family so much about life. I know that he taught this new friend quite a bit already. I can’t wait to see what else he can teach her.
Cathy Jameson is a Contributing Editor for Age of Autism.