Five Tips for Supporting Parents of Children with Disabilities During Covid-19
By: Jennifer Velez
Tags: Parenting, Diversity And Inclusion, Covid 19, Tips, Disability

A photo of a black family; two moms and their two children.

While twenty twenty has taught us many, two of the overwhelming lessons the universe forced us to acknowledge this year are: First, it is really hard to be a parent and second, it is especially hard to be a parent without community. This year shined a light, underlined and bold print the idea that the amount of challenge you might be experiencing due to lack of community grows and shares a direct relationship with the number of minority labels or intersectionalities you identify with.

A Sense of Community is defined differently by different groups but to keep us on the same page I want to refer to Sara Buckingham’s research on Community Psychology. She states, “Members can belong to a community based on one shared characteristic while diverging on other characteristics. For example, a receiving community member could be a member of a church with immigrant community members. These individuals share religion while diverging on immigration status. In this way, all community members can bring diversity to their shared communities.” Our shared characteristic with a certain group helps us feel safe, secure, and it helps us develop a sense of belonging. All things our brain chemicals love!

When you are a parent of a child with a disability, you probably don’t know much about solitude anymore. Your pre-Covid days were perhaps filled with any combination of doctor’s appointments, physical therapy, speech therapy, occupational therapy, Applied Behavioral Analysis, early intervention, and that’s on top of all the other health needs a child has like vaccinations and bedtime stories, etc. While those days were crazy, hectic and most certainly didn’t come with respite- Covid hasn’t made your life any easier! While long gone is the traffic of strangers, that have become family, in and out of your house- the days you craved for the madness to stop, now seem laughable.

As a single parent of a toddler with multiple disabilities- there have been many days during this pandemic that I have actually cried and begged for the world to fix itself. I know I’m not the only one! While the virtual world is thriving and we can gain access to other parents or support groups more readily- there is no physical presence of anyone else in your house, ever.

With no services, not only comes the parental fear of your child regressing- but there is not one single moment of the day where you can just take a deep breath, on your own, without your child hanging from you or you simultaneously having to remove them from the Christmas Tree. The tree that has now fallen over and oh-my-goodness, why did I think strings of wooden beads were a good idea!? And work, that place that used to give you a breather is gone now too! Though, naturally, as implied by the name- “work” doesn’t come with solitude either.

As we continue to move so many important conversations forward into the welcomed 2021, about the lack of equity and inclusion in our society and the various intersectionalities of impact- may we also remember an important group that needs us right now. In our forging of virtual community building- let’s be inclusive of the special needs of parents with children that have disabilities. We are not okay and we need your support more than ever.

Here is a list of FIVE things you can do- or not do- for parents in need of a little extra support right now:

Ask questions, don’t make assumptions and definitely don’t make judgments. Our whole life is about taking care of someone else. No one makes sure our needs are being met. And yet still, our biggest hurt is someone judging us, our child or our parenting based on their lack of understanding regarding the disability. Ask questions, gain understanding. This is an amazing way to show you care! Are you in a Covid-safety bubble or Pod? Offer to watch their child or to host a playdate so they can have 30 minutes to breathe or take a nap. Seriously any little bit counts! We are tired. My child is 27 months old and has never, not one single time, ever slept through the night, still. Not impacted financially by Covid? Give the gift of a GrubHub gift card! A meal they don’t have to cook and one round of dishes they don’t have to wash. And when their child’s sensory sensitivity makes them suddenly immune to any food that isn’t beige and crunchy- they won’t have to labor food that goes directly into the trash. Do NOT say, “Wow, I don’t know how you do it?” Or anything to that effect. Neither, do we! And in fact, we barely can anymore, so save the chastising. I promise, no matter how much your brain tells you so- it is NOT a compliment! Do NOT prescribe self care. We know what self care is, we know it is important, Karen. I promise you, if we had any damn time, we’d indulge. Perhaps switch the “you should” to a “Let’s try a virtual 5K?” Or “Let’s do a virtual wine night with our college friends, I will do all the planning- you just show up and log on?”.

If you are overwhelmed with all of the choices, you can ask. But parents of children with disabilities are selfless people- we have to be! If you ask, they will probably say, “Oh, no worries! I’m fine!” Knowing damn well, they are not fine. To remedy this, give a choice of two and avoid “yes” or “no” questions. There is power in choice. Let us feel in control of something, for once.

Sometimes one of the best ways to support children with disabilities is by supporting their parents. We have a whole movement inside us, if we could just take a minute to breathe.

Original citation:

Buckingham, S. L., Brodsky, A. E., Fedi, A., Mannarini, T., Rochira, A., Emery, L. R., & Godsay, S., Miglietta, A., & Gattino, S. (2018). Shared communities: A multinational qualitative study of immigrant and receiving community member. American Journal of Community Psychology. doi:10.1002/ajcp.12255