Balancing Pandemic Safety and Socialization for Kids With Down Syndrome

We’ve been “doing COVID” now for almost a year, living in New Jersey where some of the worst outbreaks occurred last spring, unable to deny the painful truth of this lethal virus. The latest outbreak in our area isn’t of COVID, but of COVID fatigue, and it’s taken me time to empathize with families who are not at increased risk and who are struggling emotionally in real and serious ways with social isolation.

As it is with disability, we often don’t get to cater to our struggles and we grow accustomed to playing by different rules. The conversation about “returning to normal” has shifted from who has antibodies, to a risk-benefit analysis of social gatherings, to who has been vaccinated, but it’s that middle point I’m stuck on—the risk-benefit analysis.

Our daughter is 5 years old and has Down syndrome. In 2019, RSV circulated around our community, but the average parent couldn’t have told you so because their child just had a runny nose. Our daughter, on the other hand, unable to clear the mucus that was settling into her little body, was in the emergency room, dehydrated and feverish, on a Friday night before the December holiday break.

Last spring, parents of children with Down syndrome were certain, based on past experiences of health complications that this novel coronavirus, as we were then calling it, was going to express differently in our children than in others. However, there was no medical evidence to support what was a mother’s instinct besides the comorbidities the general population was instructed to consider, such as heart disease or obesity. At the time, our cardiologist felt our daughter’s repaired heart would be strong enough during an infection, and our Down syndrome specialist felt that although our daughter has leukopenia, or a low white blood cell count, she would have a sufficient immune response to the virus.

Our community’s concerns were finally validated when in January of this year the CDC had enough data to add Down syndrome as a risk factor for increased complications. Thankfully, this also bolstered the state-level argument for early vaccinations. However, our daughter is too young at this time to be vaccinated. We are extremely fortunate to have in-person learning five days a week in our school district, but when our classroom or school closes, our family is thrust into total isolation. In theory, there are plenty of places we can go to play, such as parks, playgrounds, indoor gyms, music classes; they’re all open and available to us.

Masks required. Stay 6 feet apart.

Some children with Down syndrome have done extremely well adjusting to wearing a mask and following directions to remain socially distanced, but our daughter has a strong sensory defensiveness to people or things touching her face, so she still isn’t able to tolerate a mask. Out of the kindness of their hearts, adults are often willing to make an exception for our daughter when it comes to wearing a mask, or accept that she wear just her face shield, but the kindness of a person’s heart doesn’t reduce our daughter’s increased risk of complications should she be exposed to the virus.

Then there’s the social distancing. I had no idea that preschoolers could independently operate Google Meet until I saw a little girl muting and unmuting herself to verbally answer questions during remote gym class one afternoon. I had no idea that preschoolers had the coordination to tug their pants up and over their little bottoms after using the bathroom until this goal was added to my daughter’s IEP. The list of self-help items my daughter needs adult assistance with is long, and although it gets shorter as time goes on, she requires someone within close physical proximity whenever she is outside of our home.

Almost a year has passed since we were first introduced to social distancing, and winter has us weary. The disabilities social program we frequented every Saturday morning, which serves a beautiful community of medically fragile children, has been closed since last March. Recently, I figured there had to be a group working with children who have disabilities that would have figured by now how to socialize in a fun and safe way in person, so I finally researched Special Olympics only to see that our local chapter has officially canceled both their winter and spring schedules.

We continue to cherish our precious time together as a family, and we even started a social bubble for a half-hour of indoor play with one of our daughter’s classmates once a week. We are also extremely fortunate that both of our children attend in-person learning, but when we shift to remote learning due to community spread, we have very little available to us.

Everyone’s risk-benefit analysis will land them in different places, and I can only hope that those same parents who are successfully able to send their children to dance class and basketball practice in masks will be there for us when we achieve herd immunity — strong, fulfilled, and willing to lighten some of this load we’ve been carrying in isolation across so many seasons.