I live an active life as the mom of a child with a disability. One might call me in-tune with the high anxiety involved with the COVID-19 pandemic.
In our current state of anxiety and confusion, one might benefit from a little planning. Here is what my family has planned.
We live in a somewhat-isolated rural mountain community. The closest hospital is over 60 miles away. Our county’s public health department in Kern is not yet set up to test locally, but private labs apparently can and are testing people. When the local public health department is able to ramp up, hopefully testing will happen faster.
Currently, our family is planning for the worst, and hoping for the best.
What is your plan, you ask? Great question.
We live in a tiny house, so transmission between the five of us is likely, even with the best hygiene procedures in place.
In the case that both my husband and I are infected and hospitalized – remember, I said plan for the worst—our children would need care. They would need to be taken to my husband’s sisters’ home where his brother and sisters would need to care for them while we recover. All of the children would need to be tested first, and I don’t know if our community testing options recognize this need yet.
In the case that we slowly get this in our family, we have a two-bedroom care situation.
- Sick people in the bigger room, with the attached bathroom.
- Healthy people sleep in the smaller room.
- All sheets and surfaces washed daily using four teaspoons of bleach per quart of water is my plan based on Dr. Clarissa Kripke’s panel on the recent COVID-19 Webinar hosted by Disability Voices United.
If our daughter with Down syndrome is infected, our plan is slightly different.
- Care at home until her pediatrician tells us (or we feel) that hospitalization is needed. For us, heading to LA County is more likely.
- All sheets and surfaces washed daily.
- Getting all of us tested is key here. If the rest of us remain negative, we will move the family south until she recovers.
- I will likely stay with her in the hospital while my husband cares for our other two unless the hospital has a different care plan. Then, we will revisit this at that time.
Until the worst case happens, we are locked down. Essential trips only. We are lucky to be fully stocked for at least two weeks right now. As mountain people, we are accustomed to planning for about one week at a time of unanticipated isolation, but a month is harder, especially in a small space. We are doing our best.
We are taking the recommendations from the California Public Health Department seriously. This is not the time to doubt the education of medical professionals or our journalists. If everyone is wrong, y’all can cry foul later. Until then, do not endanger my family. I will not endanger yours.
We have already watched nurses and doctors save our daughter once. The pile of masks and protective gowns on the floor as people rushed in and out of her hospital room is burned in my mind. The fear that some nurses are already only allowed only one mask per shift is not lost on me. Let’s prevent spread and help our neighbors survive this together.
- Find out where to get tested near you. Each county should also be sharing statistics on current testing. Here is Kern’s.
- Disability Voices United (full disclosure, I serve on the board) is working hard to get questions answered and connect people with answers. Here is our COVID-19 website.
- People with disabilities are being left out of MANY of the current fast-tracked legislation – this can be addressed by you sending an email to your representatives today. The Center for Public Representation has a fabulous template and information sheet.
- This event might have you thinking about life planning. The Arc has a Future Planning Tool. Check it out.
- Use the National Down Syndrome Congress COVID-19 website to find answers to common questions.
Self-preservation and Mental Health Actions:
- Call your grandparents. Mine are isolated and lonely right now. I called yesterday. I’ll call again tomorrow.
- Happy Hour Tea Time with friends via Zoom or Google Hangouts or other webtool.
- Worry less about chaos; screen time may increase during this event.
- Connect with those you love. Disinfect.— #BleachMatters and so do you.
My friend and fellow Disability Voices United Board Member, Tim Jin, has a list, too.
Be like Tim!
Tim’s “Today You Can List”:
- Social distance from others
- Wash hands and don’t touch face
- Get gas in car and only drive when necessary
- Have approximately 2 weeks of supplies (food, toilet paper and etc) and ration those items. No cooking extravagant meals using all your protein and no wasting supplies/food.
- Ration money. Cut off all unnecessary costs and avoid large purchases for the moment.
- Have a “go bag” with important documents, clothing and other essential items if you need to leave the house in a hurry.