So.
I woke up with a scratchy throat, a headache, and a brain full of doomsday scenarios.
It’s probably allergies. Or maybe a minor cold.
Heck, even if it is the coronavirus, odds are we will still get through it OK. Most people do, they say, right?
But still, I worry.
We’ve been staying home for several weeks now, except for brief trips to the grocery or post office (followed by extreme scrub downs of all hands and items before entering the house). I swear we’ve been so careful.
But still, I worry.
I’ve been doing a lot of prep for the “stay home” thing – making sure we have all the right food, activities, supplies.
But I haven’t really planned for getting sick.
Which of course led me, in the early morning hours, to worry-
What happens if my son gets sick?
What if my son gets really sick, and needs to go to the ER?
There are rules that limit visitors now—would I be barred from being with him in his room? How the hell would that work? There’s got to be an exception for those who have disabilities or communication issues. Right?
I even started to think that perhaps all this video conferencing my son has been practicing with his therapists the past couple of weeks is really just prepping him to Facetime with his frantic parents who are not allowed at his bedside in some locked-down hospital.
That really will not work. On so many levels. I got myself all in a tizzy and took a bit to calm myself down.
Nope. Worrying over “what if’s” isn’t helpful.
What would help is to be ready. As ready as I can be. Just in case.
That’s all I can do.
First, I’ve learned that our local hospital has a “one parent per child” policy. My “child” is an adult, but we do have legal guardianship, so I am hoping they would say we still count under the parent/child rule. As things get worse, those rules may become more strict. There’s no way to really know until we walk (run) in the door, because the situation changes so much every day.
It sounds like emergency rooms will be making those decisions regarding needed caregivers on a case-by-case basis. So, our local autism agency suggests, in the event we have to go to the ER, to have my son’s doctor call the hospital first, to make sure they understand what we need.
I’m collecting phone numbers for the people I need to call for help, if needed.
Of course, we would care for him at home, using the 24-hour Nurse line for support, as long as possible.
But now I’m also making updated lists and prepping a “go quickly” bag.
These things will help us be able to get our son to the ER with the correct items in tow, and help us to better communicate what supports he needs. If the worst were to unfold, this will help us to be ready. (Well, emotionally, no. But technically, yes).
If my son needs ER services, I’m bringing with us:
• A copy of our letters of guardianship
• His medicaid insurance card (and a copy too)
• All of his medications
• A communication board – something like this one – so that if I can’t be in the room with him (that just can’t be true), he might have a chance of being able to communicate. I’ll be introducing this board to him now, and practicing with him so it is familiar.
• An “info” sheet (to use at intake so I’m not scrambling to remember key info; and to give to the nurses who will be helping him), with:
◦ Phone numbers of all the important people, including us. Not just doctors, pharmacists, behavioral health supports, and family or friend emergency contacts, but other providers familiar with my son who would know how to interpret his behaviors or give advice on how to communicate with him.
◦ Lists of allergies
◦ Lists of medications, and the schedule at which he takes them (which for my son is an all-day event)
◦ Some basic (and specific to my kid) autism info to explain his behaviors, stims, fears, and quirks. Including quick tips on how to communicate with him, as in WRITE IT DOWN so he can understand what you are asking him.
• Items that he uses daily, if allowed (if he’s really sick of course he may not be using any of these, at least not at first)
◦ Fidgets (beads), for calming and comfort
◦ Earplugs, for sound sensitivity
◦ Any other comfort items, like his iPad (and charger)… maybe. In the crisis mode that would find us at the ER, this seems unnecessary, but they may need a way to keep him distracted. Oh, that reminds me to pack my phone charger, too.
What am I forgetting?
I guess this is my new project for my “stay safe at home” time. If nothing else, it helps me feel a tiny bit better, despite having a slight cold/allergies/paranoia, knowing that I at least have a plan.
A plan that I will never, ever, need to use.
It’s all I can do.
***
My friend, Dixie, who gave me the idea for this post, has a blog about this here.
Stay Quirky, my friends 