Each night before the kids’ bedtime, we gather in Ronan’s room to say family prayers. We go around individually with our own prayer requests. The kids have had the same general prayer request for years: for Ronan to be able to communicate. Over time, that simple request has evolved. They now have more specific intentions: for Ronan to get his words back, for him to use his words, for him to be able to verbally communicate, and for him to have a meaningful verbal conversation with us. Since Ronan had speech at one point in his life, we remain hopeful that it will one day return.
Bedtime should be quiet time but it actually turns into the best time for the kids to communicate with their non-verbal brother. Before the whole family has pig-piled into Ronan’s room to start prayers, he gets some one-on-one time with a sibling. Sometimes it’s Fiona who joins him. Other times it’s Willem. Lots of times it’s his silly little sisters. No matter who has a few quiet minutes before we gather at the end the day, I always hear one of the sibs ask Ronan to say something.
Hey, Rone. Can you say shapes? Try it. S-h-a-p-e-s…
I’ll sing the song but you say the word that’s missing. Ready? I’m bringing home a baby bumble---
I found one of your favorite pages! Say it with me, “And our fish said ‘No, no’…make that Cat go away...tell that Cat in the Hat you do not want to play…”
When he hears his favorite words being said, sung and signed by the siblings, Ronan’s eyes light up. His interactions improve. His verbal output attempts increase. Squeals are squealed, and hope is restored.
Using words or phrases from his favorite books, movies, or songs, instead of winding down for the day, everyone gets a little jacked up. Despite how exhausted I am and how much I’d like their day to end so I can catch up on whatever I need to do, I never stop their activity. Ronan feeds on the kids’ positive energy and communicates more in the ten minutes prior to bedtime than he’s done all day.
When they finally do slow down for the day, the other kids gush all over that brother of theirs. That isn’t the only time they show him any attention or affection, but it’s the time of the day that they give him all of their attention all at once. My typical kids are active. They love to play, run around, play, swing, play, do arts and crafts, and play. It’s rare to see them quietly sitting still. Ronan, on the other hand, is a couch potato. He’d rather play Wii. He’d rather watch YouTube videos. He’d rather play a game on his iPad. Trying to interact with him while he’s engaged in his preferred activities doesn’t work out so well. We do curb screen time to make sure Ronan gets regular play time opportunities, but his underdeveloped social skills prevent him from wanting to join in on the playtime my other kids crave. I know it’s hard for the siblings when Ronan ignores their requests to join them, but they don’t stop asking him to play. The other night at the end of prayer time, though, I could tell that one of the siblings was getting a little frustrated. The frustration was not toward Ronan but with why it’s sometimes hard for him to do things that she, the younger sister, can do so easily.
Waiting until the other kids had skipped off to bed, Izzy crawled under the covers with Ronan. I’m going to snuggle here with you, Ronan,” she said as she cozied up next to her brother. Laying quietly next to Ronan under his favorite blankie, I could tell that she had something on her mind.
“Mommy?” Izzy started.
“Yes, sweetie?” I replied.
“Mommy, what if Ronan hadn’t ever gotten the flu shot?” Izzy asked.
I offered, “Life would be different, honey.”
Somewhat nervous, she lowered her voice and asked, “What if he wasn’t here?”
Pausing, I answered, “Well, life would be very, very different.”
Snuggling closer, Izzy lay still for a few minutes. Then, she leaned in, closed her eyes, and gave Ronan a kiss on his forehead.
After laying quietly for a few more minutes, she said, “Night, buddy. I’m glad you’re here,” and then tiptoed out of the room
Holding back tears, I hadn’t expected my emotions to be walloped right after family prayers. It had been a trying day. Ronan had had a seizure earlier. He was fine by nightfall, but in keeping seizure watch over him that afternoon, my day had been completely rearranged. I had planned on getting caught up after prayers and to also get us ready for the next day – lunches needed to be made, laundry needed to be finished, emails needed to be returned. All of that would wait.
A million thoughts ran through my head. What If. I don’t play that game as often as I used to, but it appears that Izzy has started to. I don’t mind. It shows me that she’s been picking up on some of the vaccine talk that comes up in conversations she’s heard me have.
Izzy’s gotten the abbreviated version of what happened to her big brother, but she knows completely that it didn’t have to happen. Even as young as she is, she knows that some of the shots are worthless. She knows that vaccine injury isn’t a one and done deal also. The negative side effects can last quite a long time. As we approach Ronan’s 14th birthday this week, I’ve been reminded more than ever just how much that vaccine injury affected his growth and development. His vaccine injury affected the entire family and has done a number on my emotions. It’s obviously done a number on Ronan’s little sister’s emotions as well. That part is hard. But each night as we try to find something hopeful together.
Each night, you’ll find us gathered as a family to pray. We pray for Ronan. We pray for his words to come back, for his seizures to stop, and for his health to return. Ronan’s youngest sister prays for friends’ children by name: for Brandon, for Kael, for Patrick, for Ben, for Nick, and for other kids who were in need of prayers like little Penelope. Some nights, especially the ones that come after a rash of seizures or after I’ve been on the receiving end of Ronan’s aggression, it feels like it’s a long shot to pray. But my kids remind me to pray and to pray always.
So I, along with them, hold onto the hope that their brother will talk again, that he will want to play with them, and that other kids like him will be granted healing. Healing from the physical pain and the emotional pain – with all of my heart, I welcome that. It would take a miracle for healing that to happen. What a miracle that would be!
Cathy Jameson is a Contributing Editor for Age of Autism.