I was at the playground with youngest the other day. It was one of the first real fall days we’ve had and a perfect day to spend outdoors. As my daughter and I held hands walking from the parking lot to the playground, I could see a bunch of kids running all over the place. Some were climbing, others were sliding, and a large group was playing tag. Some stood still as if they had been frozen. Ah, Freeze Tag. I remember it well. But when I got closer, I listened to what the kids were saying – Help, infection! Do you need healing? Yes, save me! What an odd conversation. I slowed down my pace so I could keep watching. With a simple touch, the Healer tapped an infected boy. That simple tap released him from his frozen stance. What an odd game!
I later learned that it wasn’t Freeze Tag. It was a game called Infection. I remember my oldest daughter telling me about the game back when she was still playing on the playground. “It’s just like the original Tag game, and also like Freeze Tag, but has some different elements.”
I’ll say it does!
Instead of continuing our walk around the playground that beautiful fall day, I stuck around and quietly listened some more.
“Help me! I need healing!” another boy yelled to a group who’d just run past him.
Who needs healing?
Getting caught up in the excitement, I wanted to yell out, “Ronan does!”
Oh, how we’d love to see that happen. One of my other daughters desperately wants her brother to be healed. She and I stayed up late one night last week talking about Ronan. Izzy had heard a conversation about vaccines and was curious about the adjuvants, like aluminum, that are added to some of them. She knows that some kids cannot detox metals and could be worse post-vaccination than pre-vaccination.
“Why do people think we’d be better off with all that stuff in our bodies? It doesn’t make any sense,” she said.
Izzy wants to learn more so that one day, when she’s a mom with kids, she will know what to avoid. She knows I didn’t know enough years ago and that my lack of knowledge about diseases lead to making uninformed choices about vaccines. That lack of knowledge lead to Ronan’s vaccine injury. When it came to vaccinating, my choices turned out terribly. Izzy is very aware of that and quietly listens in when she’s been in earshot of a vaccine convo I’m having with someone else. She’s drawn to those conversations and craves more. That’s because she knows that…
Had I known that some diseases weren’t as dangerous as others, I’d have avoided certain vaccines.
Had I known that some diseases aren’t as scary as the media makes them out to be, I’d have thought twice about vaccinating altogether.
Had I known that some diseases can be treated with alternative means, I’d have started to look at alternative medicine much sooner than I actually did.
But I didn’t know all of that as a young mom. And at the time, I didn’t have the wherewithal to look any of that important information up. Now that I know more though, it’s like that game of Tag on the playground. Izzy’s frozen. She’s watching and waiting for someone to get her in the game. But it’s not Tag, You’re It with an infection; it’s Tag, You’re It with knowledge. She wants information now and for when she’s older, too. Watching her big brother grow up without words, without skills, and without the same chance she has toward independence pains her. If she could get some sort of healing for Ronan, I know Izzy would be the first one in line to get it. In the meantime, she seeks to learn what I did not while praying daily and nightly for her big brother. She asks that others will seek and pray, too.
Because sometimes, it feels like no matter what we do and no matter what we’ve tried, Ronan continues to be a non-responder compared to other kids. While everyone else is running around the playground, he’s frozen standing in place. He’s still plagued by seizures, by developmental delays, and by lack of speech while others are tagged Progressing! Recovered! and Independent! We literally jump for joy when we hear news that others have reached that independence. We cheer so loudly when we see our friends’ kids going off into the world on their own. Ronan’s far from that still, but we won’t ever give up on keeping at the chance to heal what ails him.
For Ronan, we crave physical healing. For us, and especially for my typical children, the healing we’d like is different – it’s an emotional healing from some of the difficulties experienced during this journey. While they are some of the strongest humans I know, being an autism siblings isn’t a gift. It’s hard. It’s trying. It’s frustrating. All that said, it can be also rewarding. And they will be the first to tell you that. Always their first question when they come back home from school, How was Ronan’s day?? His siblings love to hear what he did that day and want to know how he’s feeling. They love, care, and stand up for that brother of. As they age and move into adulthood, I hope that they will continue to do that.
So, like the kids frozen on the playground who were anxiously waiting to be healed from the infection, we’d gladly take a little bit of healing, too. Until he’s blessed with that, we will continue to stand up for Ronan. We will stay the course and search high and low for better outcomes for him while continuing to speak up about what happened to him also. If we don’t, we’ll lose an opportunity to tag someone with knowledge, with valuable information and with hope. As difficult as some days can be, we will always hold onto that hope.
Cathy Jameson is a Contributing Editor for Age of Autism.