It is hard to decipher the flood of information and recommendations coming our way as COVID-19 infections continue to rise across the country. One thing is clear: there is a substantial lack of data about how this virus impacts adults and children with disabilities.

Doctors report that children, including children with disabilities and medical complexities, are typically being spared when compared to adults and older Americans. They are failing to mention one stark difference in how individuals with disabilities and their families are handling this when compared to those without disabilities: most of us are STAYING HOME. There is no way to know how the infection impacts people who are, as a group, taking heightened measures to avoid getting infected. 

Families like ours know that the state guidelines do not apply to us. Our family is not taking any chances. Our 9-year-old son has Down syndrome and a compromised immune system. We have been corresponding with his team of doctors since January, quarantining since March. The verdict: continue with the quarantine, with some modifications. We must pay close attention to what is happening around us and decide for ourselves. Here are the guidelines we’ve come up with. 


Right now is actually a good time to get routine medical appoints done: bloodwork, hearing screenings, dental cleanings, etc. It’s important to stay healthy, especially as we move into the fall and winter months. We will get the flu vaccine as soon as it’s available. 

Request virtual visits whenever possible. For in person visits, remember that doctors’ offices have had time to get their sanitation routine down. Many precautions are in place to keep not just you, but the staff safe. Be rigorous about social distancing and masking. If you or your child has difficulty wearing a mask, let the office know ahead of time so they can make accommodations.


Our son’s team has told us there is no reason to go out and about just because everyone else is, one even suggested we let everyone do it and see what happens. That means no restaurants, no public pools, no public bathrooms, no in-person summer school, no babysitters. We still avoid playgrounds, since our 3 children would have a hard time staying away from others or understanding why we can only use certain playgrounds at certain times. 

For us, it’s lots of hiking (we stand off the trail with our backs to others when they pass). We splash and wade in rivers and lakes. We pack coolers and have lots of picnics. My husband and I avoid going into stores unless absolutely necessary. We typically stay within a 2-hour radius of our home. We have a travel potty. We keep masks in the car. We use common sense and have a plan B in case our destination is too crowded. 


I specifically asked about haircuts because my oldest won’t sit for me and very much needed one. His doctor said that with masks and safety precautions it should be safe, and cited the case where two stylists had COVID-19 and none of their clients contracted it because they were all wearing masks. My son’s stylist knows him and had thought how to handle him if he refused to wear a mask. Sure enough, the visit was challenging. We were the only customers there, she wore a mask and face shield to accommodate his mask refusal. We opted for a much shorter cut that usual to buy us more time between visits. 

I plan to get a haircut this summer since COVID cases are low in our region and that will be it for me until the pandemic is over. I will continue to cut my other children’s hair at home. 


We’re all itching for a change of scenery, but need to do it safely. Our summer getaway will be in an apartment with a kitchenette. We will drive there. We’ll basically be quarantining in a different location. Lots of hiking and carry out from restaurants practicing safety protocols. We will utilize our travel potty as well and avoid all public restrooms. 

Our getaway isn’t until late August though, so we are putting a Plan B in place in case circumstances change and it feels too risky. 


While we miss our loved ones dearly, we are not seeing anyone who is not practicing the same levels of quarantine that we are. That means no cousins, no neighbors, no friends. We have seen one family once who is also on the same level of lockdown and might see them again.


My husband and I are lucky enough to be able to work from home. As difficult as it is to care for our children and teach them while working and juggling the household, this is the only way to keep our son safe. His doctors have recommended we keep not just him, but his siblings home. We will continue to do this through the fall and gauge the situation as it all plays out.


Our son’s doctors are practicing the same level of quarantine that we are. As one of them put it, you don’t want to be one of the first ones to get this. We know so little about this virus, the longer you can put off getting it, the better your chances are of fighting it. Some scientists predict a vaccine as early as this winter, but we have no idea how effective it will be or how many will be able to access right away. 


My husband and I recognize how privileged we are to be able to take these precautions. We are sharing that message with our children, though it’s hard for them to understand their fortune as we drive by a pool and repeatedly explain why they can’t go even though their friends are there. 

This is bigger than us though; so much more than just keeping our family safe. By continuing to quarantine, our family of five is ensuring we don’t need medical attention. Given our son’s complexities, him contracting COVID-19 would likely mean needing vast amounts of resources. This would put doctors, nurses, aides, and so many others at risk. If just one person in our house gets it, we’re all likely to get it because our children are too young to understand isolation. It is our duty to stay healthy, because that will help keep others healthy. This virus is bigger than one person, everyone needs to do their part. So, we stay home. 

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