For some reason, people often think Rick and I have a special communication connection with Josiah.  Josiah is non verbal. So, naturally, people ask questions about him when they need to gather information. Some questions are logical. We definitely have the answers. Others, not so much.

Monday afternoon I spoke with a nurse on the phone. I explained Josiah’s behavior. I told her he was non verbal. I told her he was sleeping most of the day, but woke 2 separate times and cried hard. He cried for close to an hour both times. He hit himself in the head a few times. He moaned a lot.

“So, he has a headache?”, she asked.  “Ummm, I guess he could have a headache”,  I said.  “I’m going to write down he has a really bad headache and he’s dehydrated”, she responded.

“On a scale of 1-10 how bad is his pain?”  I had no idea how bad his pain was. He wasn’t telling me. I didn’t remind her. Instead, I guessed.  “7, I said. On a scale of 1-10 his pain is a 7.”  She wrote it down.

In the hospital, many times I was asked, “How is he feeling today? Is he feeling any better do you think?” One morning a Dr. walked in around 7 am. The room was dark. Josiah was sound asleep. I was trying to be sound asleep. The Dr. asked, “So, how do you think he’s doing today?” “Hmmm, I don’t really know. He’s sleeping,” I said, as I glanced over at Josiah’s bed. He nodded, took out a notebook and wrote something down.

A nurse was concerned about the red, tender looking area around Josiah’s IV port.  “Is he in pain?” she asked me.  “I’m not sure,” I said. “He’s moaning a bit. He grabbed my hand and threw it towards the IV port area”, I told her. “So, you think it’s bothering him? Should we take it out? Do you think he’s in a lot of pain?”

OK, I know as Josiah’s parents, we know him best. But, really? Do people really think we have some kind of mind meld with the boy?

Sleep deprivation makes me either really cranky or really silly. Fortunately, mostly I just get really silly. So, I am tempted. Here’s my plan:

The next time someone asks, “How is Josiah feeling?”  I’m going to walk to a corner of the room, stare intently at Josiah. using both hands to twist my ears as I cock my head a little to the side and say something absurd like,  “Is there another family with an Autistic child nearby?  I’m picking up something about a boy named Greg. Do you know any Gregs?

And then, “I can’t be sure but a Lean Cuisine in the microwave may be done cooking in 43 seconds. Someone should probably check on that so it doesn’t burn.”

I’ll stare a little longer, then add,  “Josiah, that’s not funny, sweetie. No, I am not going to repeat that. Come on buddy, they really want to know how you’re feeling.”  After a serious, I mean business look at my child followed by a long pause, I’ll announce.”He’s feeling better.  He says he’s really hungry.  The pudding here isn’t his favorite but he’s asking for more yogurt.”

“Oh, and as long as you guys let him just rest and stop coming in to check on his vital signs every 4 hours, he says he’s good.  Over and out.”

Last night, after his first full day at home, Josiah didn’t look so great. He was moaning a lot and crying quite a bit. Rick was concerned.

“Maybe we brought him home too soon from the hospital”, he said. “Maybe he wasn’t quite ready to be discharged. He isn’t doing very well.”

I held Josiah tightly in my arms to comfort him and never even realized it when I asked, “Do you think he’s in pain?”

“What do you think is bothering him?”