Special Needs Parenting in the Covid Era
By Diana Outlaw, Associate Professor, Biological Sciences, Mississippi State University
To my fellow parents and community members in rural America,
After the schools closed in March, 2020, we sat out the remainder of the 2020-2021 school year, opting to keep our exceptional child safe at home. It’s not so much that we were worried about her being more vulnerable to Covid but that her poor adaptive skills and general lack of hygiene awareness made us extremely apprehensive about the germ-ridden cesspool of an elementary school.
You see, Arya has encephalopathy, essentially widespread brain damage that affects every aspect of her functioning, from her cognitive level to her understanding of time, from understanding her body’s cues to being able to find something that is right in front of her. She can be “trained,” but she doesn’t understand why. She learns through repetition, and her reasoning is always circular.
We had no choice for the 2021-2022 school year except to send her back. But we practiced with masks, and she showed us that she was exceptionally compliant. One upside of perseverance! We got her vaccinated as soon as she was eligible, and she was thrilled. She gets a subcutaneous growth hormone shot every day, so needles are not a big deal to her.
Arya is in a self-contained classroom, which means that most if not all of her classmates also have poor adaptive skills. Which translates to mean the most vulnerable students in the school, which further translates to the families of her classmates being more vulnerable than most because they are often the only care and safety that her classmates have. If one of their family members gets sick, the children will suffer.
But, one night earlier this year, I got a text from Arya’s teacher, informing me that everyone in Arya’s class (students, teachers, aides) had been in close contact with someone who had tested positive for Covid. In that moment I was beyond upset — for my own family, and for the families of the rest of the students in the class. A caregiver goes down, and ward of the state may be the only choice for these kids. Everyone had to quarantine for five days, which really meant seven because it was a three-day weekend. Literally, the kids had no class to go to, so that meant that someone had to be home caring for those kids, probably missing work, missing income, missing food. The reality is that no one will likely ever know what the impact was. And, my cynical side believes that no one cares.
Let me just get really clear and blunt here. I am a privileged, well-educated white woman with multiple safety-nets. I can work from home and have all the benefits as a salaried state university employee. So, we quarantined and I worked when I could, with zero concern about our livelihood. Zero. Oktibbeha County in Mississippi, like most of Mississippi is rural, with limited internet access, limited access to transportation, limited access to health care. In a study examining the early impact of the pandemic in Mississippi, which has “the poorest score of all 50 states on the economic hardship index, . . [taking] into account unemployment, dependency, education, income, crowded housing, and poverty,1” rural Mississippians had significantly higher case rates and mortalities than non-rural Mississippians. In this context of rurality and poverty, essential employees at the university and in the community had no choice over the course of the pandemic. They couldn’t work at home. They couldn’t be home to make sure their kids got their schoolwork done. For most of the families in Arya’s class, another 5 day quarantine has real, and quite likely economic, consequences — consequences that could be prevented with widespread vaccination.
So please — if you can, get vaccinated, and get your kids vaccinated. We Can Do This! For yourselves, for kids and families like those of Arya’s classmates. The caregivers of vulnerable children thank you very much. For more information about vaccinations, go to vaccines.gov.
1Zhang, L., Mcleod, S. T., Vargas, R., Liu, X., Young, D. K., & Dobbs, T. E. (2020). Subgroup comparison of Covid-19 case and mortality with associated factors in Mississippi: findings from analysis of the first four months of public data. Journal of biomedical research, 34(6), 446–457. https://doi.org/10.7555/JBR.34.20200135