So, I woke up at 5:20am on Friday morning. Luckily, Willy still slept. I poked my head out of the room, called for a nurse, who came in to watch Willy while I had a cigarette. Ah, nicotine addiction. It sucks, but I haven’t been able to kick the habit yet.
Willy woke up some time after I returned, and had a breakfast of an apple and milk (which I ordered for him from room service) and carrots (which I’d brought with me). Everyone commented about how healthy he ate. As for me, I had brought a yogurt drink and smoothie, and I drank both up, wishing I could get some protein into Willy in the mornings, but that’s just not going to happen.
By 7am, I needed another cigarette and the doctor wasn’t expected for another hour. I went through the warren of hallways and such, and for the first time I didn’t get lost on the way there or on the way back. Nice! When I got back to Willy’s room at 7:20am, the doctor was waiting. Oops!
Oh, well. He repeated everything we’d talked about, filling in a few blanks, and made sure I knew the plan of action we’d be following over the next few weeks. He also told me it’d take about two weeks before he could produce the full results of the EEG. Then, he said that we needed to give Willy his morning pill, get the gunk out of his hair, get checked out the by lead doctor and the string of interns, and then the nurse would discharge us. “You’ll be going home soon,” he said to Willy.
And here is my one point of criticism: “Soon” is a very bad word to use with a literally-minded person. See, as an adult, I know “soon” is relative. But even I struggle with the misuse of “soon.” Willy is not an adult and he struggles to reign in his overly-literal thinking when interacting with less-literal people. See, to Willy, “soon” means in a few seconds—a few minutes at most. An hour cannot be “soon,” no matter the relativity of one hour compared to 24. No, an hour is definitely not “soon,” and it is most certainly not “soon” when it’s for something—like going home—that you’ve been begging for.
So, while Willy clung to the word “soon,” getting more and more upset as “soon” seemed to get further and further away, I clung to the list of tasks that needed to be completed. Doctor and string of interns came in and did their thing. Check. Technician came in to remove electrodes and started the process of cleaning the glue from Willy’s hair. Check. Finally, the nurse came in to administer medication. Check. So, we get to be discharged now, right? After all, Willy had been weepy and whiny for the last hour and a half, waiting for “soon” to be “now.” So, now that we’ve completed the checklist, do we get to go?
Ah, no. See, the pharmacist needs to come. Why? To tell you about the medication. But the doctor already told us about the medication—twice. Once the nurse gives us our discharge papers, we’ll have a paper record of the details about the medication. But, the pharmacist has to come to tell us about the medication. Okay, fine—when? It’s hard to say.
So, for the hour and a half Willy was miserably awaiting “soon” and I was the rock, calming him down. Then, after this, Willy gets calm and I start to melt down. I’m trapped in a tiny hospital room (see how it’s shrunk from “small” to “tiny”) with a child who just wants to go home, we’ve done everything we were told we had to do, we’re packed and ready, and now we’re waiting for someone who has never met my son to tell me about the medication the doctor prescribed, who had already explained the medication and the plan of action and had not only met my son but had been treating him all night long and the medication had already been started and what the hell was this guy supposed to know that the doctor didn’t! So, we waited another half hour for nothing. Repetition—unnecessary repetition.
I felt like a dog on a chain that was too short and too tight, straining, straining, straining to be free. Trapped in a box. I needed to get OUT!!!
It’s not entirely reasonable. I know that. I do. But do NOT use “soon” with a child with autism, when it means something totally different to you than it does to him. It’s not reassuring. It’s frustrating. And do NOT give a to do list to someone who relies on them to function, only to add things to the list at the last moment after having dealt with an hour and a half of false “soons.”
It’s badness. That’s all I can say.
Luckily, the nurse picked up on the fact that this whole pharmacist thing wasn’t going over well, so once the pharmacist actually arrived she began the discharge stuff, so when the pharmacist left she was walking towards me with the discharge papers the very moment I stuck my head out of the room. Freedom at last!
We arrived home 23 hours after we’d left. And my day had just begun, because my brother had arrived the night before and the time I would get to spend with him before he headed to his new New York graduate school was short and precious and worth every little bit of exhaustion I would experience over the next week.