Covid’s incapacitation of autism parents offers a glimpse of what’s to come in the future.
(Stock photo)
By Kimberly Christensen
We are a family of five, blessed with three daughters, the oldest of whom, age 21, has severe autism. We have been diligent about mask wearing, not socializing and not traveling. Traveling has never really been an option even in pre-Covid days because, honestly, severe autism doesn’t do air travel or even airport bathrooms. None of our children are attending school because I have asthma and we knew if I caught Covid, it would be bad.
I was right.
I didn’t expect Covid to strike us all at the same time. My husband caught it first and was bedridden. Our daughters fell ill the next day running low fevers. I woke up the following day with a sore throat and as soon as the fever started, I was in a panic. Our autistic daughter needs round the clock care to manage her behaviors and assist with daily living skills such as toileting, showering and meal preparation.
I was terrified my husband and I would end up in the hospital with no one to care for our autistic daughter. I reached out to our Regional Center worker (we live in California) to see about temporary placement in case we were both hospitalized. The only response I received was that a few residential care homes were working with clients that had been exposed to the virus, but our daughter may need to isolate for 10-14 days. She already had the virus at that point.
Fortunately, my husband was bedridden for only 3 days. He had a mild case and recovered quickly. All three of our daughters were relatively mild too. But I had two Emergency Room visits, ran a fever of 103 for five days and developed pneumonia in one of my lungs. I spent three weeks barely able to get out of bed, and a month later I still consider myself recovering. I’m incredibly thankful that my husband was well enough to be her caregiver during that time. But I still have this fear of what would have happened if we were both hospitalized.
Covid has shed a spotlight on the weaknesses in our current system that depends on parents as full-time caregivers for our developmentally disabled adult children. We need more support, more housing, more trained professionals who know and understand how to care for our children. We need this especially now during a global pandemic that threatens the health and safety of us all.
Kimberly Christensen is the mother of a young woman with severe autism. She lives with her family in California.
Disclaimer: Blogposts on the NCSA blog represent the opinions of the individual authors and not necessarily the views or positions of the NCSA or its board of directors.