My son had his first MRI today.
The ear surgeon wanted to see the results in his left ear, and we knew this day was coming. But they also wanted to see what’s going on in the right ear, as he may need surgery there, too. An MRI is scary for anybody. For a kid, it’s worse. For a kid on the spectrum, it’s a different kind of mountain.
So we prepared.
Children’s Hospital of Colorado made a video about what to expect in the MRI. We watched it every day for a week. We built a setup at home: he laid his head in a canvas toy bin, put in earplugs, and put on headphones. The Children’s Hospital MRIs have a setup that lets kids watch a movie during the procedure, so during our home MRI practice, I held up an iPad playing K-Pop Demon Hunters. Meanwhile Juli banged pots and pans and made loud noises while encouraging Royce to lay perfectly still.
We got Royce pumped up. Told him he was going to be an MRI Star!
At the hospital he and I both changed into scrubs, because one parent was allowed to go back with him. They let the kids bring a stuffy and a blanket, too, as long as there’s no metal on it.
We walked into the MRI room.
His whole body changed. He tensed up, started taking smaller steps. “I am shaking. I am shaking.” That’s Royce-speak for scared.
We went slow. The tech’s name was Krystal. She was patient and willing to do this in whatever tiny increments he needed. I sat on the bed. Then he sat on my lap. Then he touched the bed. Then he sat on the bed. Then we worked on laying him down, getting his head in the cradle.
He started naming his zones. “I’m in the Blue Zone. I’m in the Red Zone. I’m shaking.” We got his blanket on him. He held his kitty.
We tried the helmet. It’s not actually a helmet, it’s a plastic frame that sits a few inches above his head and improves MRI image quality. It also holds a mirror in place. That mirror reflects to a TV behind the MRI, which is where the movie will play.
We got him to lay down under the helmet but he went right into the Red Zone and sat up.
We backed up and worked on each step: earplugs first. He said they were too squishy, but he dealt with them. Then the headphones. He said they were uncomfortable.
We got him back down. “Let’s try the helmet for just 10 seconds.” We counted to 10. Krystal unclicked it and let him sit up. Still nervous, but okay. Let’s try again, longer this time, with the mirror in.
Krystal told me my options during the procedure: I could stand at his feet and hold his toes (not recommended, because kids lift their heads to see their parents), or I could sit by the TV so he could see me reflected in the mirror.
We got him back down in the setup. I went to the TV and he grabbed for Krystal’s hands. I was on the other side but I could see him in the reflection. I gave him two thumbs up. He gave me one back. I told him that’s exactly where I’d be the whole time.
Then came the wedges.
I hadn’t thought about the wedges. Little foam blocks they push in between the headphones and the cradle to keep his head locked in place. More pressure. More tightness. We’d practiced a lot of things. We hadn’t practiced that. He shot up with tears in his eyes. Headphones off. Earplugs falling out. Red Zone.
We showed him the wedges. Let him touch them. Explained what they do. I got him to try again.
This time he grabbed onto Krystal’s hand and wouldn’t let go. She had to go operate the machine. She told him gently, “I can’t stay here.” I was holding his toes with one hand, holding Kitty with the other and trying to hold his arms down. The moment she pulled her hand back, he was up. Everything came off.
We started over. I asked Krystal to start the movie first, thinking it might distract him. She did. We got the earplugs in, the headphones on. He could hear the movie. Got him down. Wedges in. He grabbed her hand. Squeezed. Helmet. Mirror. She tried to pull away.
Same thing. He shot up, tears in his eyes, everything fell off.
We’d been at it least 30 minutes. Krystal was kind but she had other patients waiting, “I’m sorry, but we’re already over time.”
We went into this knowing it wasn’t going to be his only MRI. With the right ear possibly needing surgery, we might be looking at annual MRIs for years. If we couldn’t get through this one right now, it meant we’d have to come back and use anesthesia. And for every time thereafter. We didn’t want that for him.
I stood there feeling completely hollowed out. Gutted, thinking about walking back out to Juli and telling her we couldn’t do it.
I kept my voice level, but Royce is sensitive; he knows when something’s wrong. “Come on Royce, we’re all done. Let’s get your stuff and go.” I grabbed the blanket and kitty, and I swung his legs off the table.
Something clicked.
He laid right back down, put his head in the cradle, and said, “I’m ready to hold still.” His eyes were bloodshot from the tears, but they were fierce and determined. “I’m ready to hold still,” he repeated.
I looked at Krystal. “Let’s give this one more shot.”
Earplugs. Headphones. Wedges. Helmet. Mirror. He reached for Krystal’s hands.
This time I grabbed them instead. That wasn’t one of the options I’d been given. Krystal didn’t say anything and I didn’t ask. I just held his hands.
She left the room and I heard the heavy door thud closed. The table started sliding back into the machine. They only needed to scan his head, so I could still reach his hands when he was in the middle. He went in and my arms went with him.
I was bent at about 45 degrees, shoulders and head outside the magnet, arms and hands inside, holding his hands. I positioned myself as high as I could in his sight line so he could see me by flicking his eyes to the bottom of his lids.
I was shouting over the K-Pop Movie and the MRI racket. “Just get to the Blue Zone. It’s gonna be okay. I’m right here.”
And he did it.
For the first few minutes he held still maybe 75% of the time, dipping his chin a bit to see me better and say something that I couldn’t hear over the insane MRI noises. By the end he was completely still. He’d flick his eyes down, see me, flick them back up, watch the movie.
I could see him singing “Soda Pop” when it came on.
I would catch glimpses of the movie, but really, I was focused on him. Every time I’d look at him, I was so overcome with pride and joy that now I was crying. At the brink of giving up, at the point of failure, he dug deep and found a fire inside.
I held his hands for over 30 minutes. My lower back cramped so hard it went past pain into numb. When Krystal said “okay, all done,” and rolled him out, I couldn’t even stand up straight. I didn’t care. Royce came off the table and I couldn’t stop telling him how proud I was.
When we came out to the waiting room Royce saw Mommy, he ran over to her and with tears starting to well up again said, “I was in the Red Zone, then the Blue Zone and then the Green Zone!” He finished the sentence with pride in himself.
Juli asked the tech, “did you get the images?” She said yes, and Juli burst into tears of relief and joy. He sat in Mommy’s lap and was showered with hugs and kisses.
He was scared. He knew he was scared. And he did the hard thing anyway.
That look on his face when he laid back down after everything had gone wrong, that look of determination, I’ve never been more proud in my life.
