Parenting with a Disability During COVID-19:  Insights from the #COVIDDisParenting Twitter Chat

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Introduction

Parents with disabilities face unique experiences and challenges as they raise their children during COVID-19. On March 25, 2020, the National Research Center for Parents with Disabilities and the Disabled Parenting Project held a Twitter chat, where disabled parents discussed strategies and supports for parenting with a disability during the COVID-19 pandemic. The chat was one hour and included 347 interactions, with an estimated social media reach of 22,699. The following quotes highlight a number of important themes about parenting, COVID-19, and disability.

Helpful Strategies

Parents described strategies they have found useful during COVID-19, such as stockpiling supplies, developing schedules and routines, self-care, and using technology for education and socialization.

“I’ve found my somewhat odd habit of stashing away little surprises and activities really helpful to keep my 3 busy while we are at home.”
“In the first few days, there was also the need to try to get 90-day supplies of meds for everyone. We were successful but it was impossible for many.”
“We’re also trying to maintain some type of normalcy around our routines and schedules. It’s extra tricky because this is supposed to be ‘spring break.’ Later bedtime is about all I can offer this year!”
“I’m *definitely* operating with a higher background level of anxiety, I’ve been trying my best to focus on the things I actually can control, even if that purely moment to moment. I’m also letting myself shut off mentally after my family is in bed, & not focus on productivity.”
“FaceTime and Zoom have been fun ways to connect the kids to friends and family we can’t see in person right now.”
“There is so much great digital stuff out there, and at first I was finding it very overwhelming. One that stood out to me was the TedEd stuff, and we watched one of their videos over lunch today.”
“I’m offering tech support to able-bodied parents in my daughter’s class, as we all try to get our kids online and connected to one another. Understanding Zoom is like my blind mom superpower. LOL.”

Social Distancing

Most parents said they were closely following recommendations for social distancing, especially because many reported being “high risk.” Most families were social distancing; however, some parents shared custody and were separated from their children. Some parents left their homes for grocery shopping or to transport their children between parents.

“My husband and I are both high risk so we have been self-isolating for 10 days now. He leaves once a week to pick up our Clicklist groceries.”
“We’re hunkered down at home. Teleworking and homeschooling.”
“My parents normally help 3x a week with childcare - we’ve decided to isolate from them, which is hard emotionally and hard because both my partner and I are working full time while managing a 3yo.”
“We are following the recommendations as closely as possible. We have been under voluntary isolation/Quarantine for almost 2 weeks. The reality is that we do have to go out to get groceries, but only the bare essentials are worth it right now.”
“The last time we were out of the house was about a week ago, but things have been getting worse, so I haven’t been risking it.”
“With younger kids ([especially] my 3 year old in our case), I feel like we are even more limited because I can't trust that she won't touch things or get too close to someone if we go to a public place for a walk.”
“[M]y daughter’s mom, I & our daughter have been very careful following isolation and distancing rules. I’ve been separated from my daughter until we can be safe…”
“I go out twice a week to drop youngest off at my ex’s and to pick her up. I do any grocery shopping during that time and then go by and visit my oldest and mom to make sure they don’t need anything.”

Unique Concerns and Experiences

Parents described how their concerns and experiences related to COVID-19 differ from nondisabled parents. Many parents were worried about what would happen if they got ill, and were particularly nervous about bias within the healthcare system.

“It’s a scary time for everyone but most nondisabled parents who aren’t high risk don’t have to grapple with the potential that they could very likely die if infected.”
“The idea of one or both parents succumbing to the virus is horrific to think about. I also worry that my children could lose their grandparents and their great grandmother, all vulnerable to this.”
“Honestly, I feel like I’m not going to be able to maintain the stamina needed to manage working from home full time and homeschooling a VERY ACTIVE almost 9-year-old who would rather be out playing ball…”
“I also fear that if my husband and/or contracted, we’d encounter the bias and discrimination that we’re hearing about in attempts to get what would be life-saving treatment. That keeps me up at night too.”
“Blind folk touch things, including other people, to provide sighted guide. Public life will change. More than that though, I worry that if I get sick, all the doctors will see is that I can’t see and my health care will be rationed accordingly.”
“Underlying health conditions + the possibility of acquiring #COVID19 is concerning. Who decides if our #disabled community is worth saving? We’ve fought for disabled education + accessibility on behalf of non-disabled parents. Will they do the same?”

Preparedness and Unmet Needs

Given the rapid changes related to COVID-19, parents did not have much time to prepare for so many life changes. Parents reflected on things they would have prepared for if they had more time. Many parents wished they had more time to prepare for teaching their children at home. Others wished they had visited with extended family before isolation.

“In trying to think of what I would have done, it’s somewhat helpful to realize that there wasn’t a ton I could have done differently. Maybe see friends/family for a last time for a while but that would have also been sad.”
“I wish I had some mental prep for this homeschooling/virtual school situation. I work full-time and now must also take primary responsibility for my children’s education. We are very strong public school people so homeschooling has never crossed my mind.”
“I would have made a solid plan for digital learning and created a schedule to weave that in more smoothly with working from home.”
“We had most everything, but were always taught not to take more than you need. #Hoarders caused us to be more careful of our health, safety like never before. Never thought #kindness would be a commodity. Cleaning supplies are gold. We need to be healthy.”
“Visual homework help!!! Reading primary school children’s handwriting in pencil – impossible for the legally blind!!!”
“I kind of did have a head start because my spouse moved out two weeks before restrictions started. During that time, I prepared single serving cups of frozen cooked meat. Started putting in home routines to meet our diverse family needs. I wish I had more board games, but luckily was able to order more. I wish I had gotten more frozen veggies.”

Information and Resources

Parents discussed where they go to get information about COVID-19 as well as resources for parenting; however, some parents expressed frustration about the lack of accessible information and resources available for disabled parents.

Information about COVID-19 identified by parents:

Resources for children identified by parents:

Strengths

Many parents believed that having a disability made them more prepared for COVID-19. For several, strengths inherent to being disabled were discussed, including adaptation and resilience.

“We adapt. For those of us that have felt isolation before, we may have already tried some of these ways to connect. And in my parenting, I try to teach empathy.”
“I feel like I’ve prepared my whole life for this. I’m good at thinking outside of the box (because of my disability) and that’s what #COVID-19 is asking us to do.”
“If there’s one thing that disabled people know how to do, it’s face adversity. We are resilient.”
“We’re well connected to intelligent doctors, nurses, teachers, media, people working hard for #DisabilityRights.”
“Gosh, how about adapting has prepped us? [W]e’ve been preparing all our lives as [little people] for this. Also, culturally from immigrant parents, having little food or supplies has been a great tool.”

Supports

Some parents are using formal and informal supports to assist in parenting during COVID-19. In particular, parents used online grocery shopping. Some parents also discussed how the pandemic has reduced their access to informal supports.

“No formal supports at this time. Clicklist (grocery pickup) dramatically lowers our risk. Almost all previous informal support options are no longer available.”
“Other blind parents have definitely been a great help.”
“Have a few people checking in virtually. Checking in with a colleague by phone. And then anything that delivers, especially Amazon. No formal services though.”
“It’s our first time depending on grocery pick up. We’ve never had formal supports besides access to our in-person #healthcare to manage our health.”

Perspectives

Parents described what they would like others to understand about being a disabled parent during COVID-19. Above all, parents want others to understand the importance of social distancing.

“I wish that everyone would pitch in in social distancing and isolating to try our collective best not to continue the spread. It's hard not to take it personal when [people] don't because it could devastate our family.”
“Follow social distancing, isolation, etc. so we can see our kids grow up and remember the lessons learned here whenever we move beyond this.”
“I would echo what others have said about people needing to take this seriously. We may look young and healthy from the outside (or maybe I’m kidding myself), but our likelihood of surviving a virus is much lower than non-disabled people. Stay home!”
“I’m seeing disabled people either acting like this is no big deal or screaming for everyone to pay attention. For this first group, I think there’s a very real fear that this will only isolate disabled people more and people will think they’ll catch something from us. For the second group, it’s a fear of our vulnerability and a desire to stick around for our kids.”

Advice for Disabled Parents

Parents offered advice to others as they navigate being a disabled parent during COVID-19. Connecting with other disabled peers and self-care were the most common advice.

“Don’t forget to breathe. Do your best. Stay home as much as you can.”
“Keep or become connected with each other. I think I realized early on that my disabled parent peer group was facing this is a different way than my nondisabled parent friends. Having both has been helpful.”
“Give ourselves some much deserved grace. We’re all working through a lot AND helping our kids do the same. I’m sick of the words “uncharted territory” but it is. We can do this together...but far apart.”
“Try and keep things in perspective and reach out (albeit from a distance) to friends and loved ones and laugh when you can.”
“Talk to other parents with disabilities. They get you!”
“Reach out to other disabled parents. Know that you’re not the only one. You are strong, but remember it’s ok to take a couple moments to breathe and collect yourself.”
“Eat. Let everything else fall where it needs around eating times. It makes structure without a lot of executive functioning skills needing to be utilized. And remember this is a traumatic event we’re living through as we speak. Set your expectations with that in mind. For yourself and your kids. They’re feeling it too. It’s reasonable to not be able to do everything you normally can.”

New Outlooks

Although parenting with a disability during COVID-19 is challenging, some parents hope that the experience will lead to positive changes in how they parent.

“I am starting to find more moments of appreciation for the novelty and hopefully one-time-only experience of this. We’ll be able to talk about this shared experience as a family for years to come.”
“Being an older parent. I’m 52, daughter 13, I always thought I didn’t sweat the small stuff but if we make it through this I’m really not going to sweat the small stuff. I also hope I’ll appreciate the little moments more.”
“I don't know for sure but maybe we'll continue to integrate some of these ways to connect from afar into our everyday life more often.”
“I’m more appreciative of the funny things my kids do. Or even how creative they can be if we’re not constantly on the go. It’s slowed us down as a family and allowed us to just see each moment.”
“I think I’m going to be more strict with bedtime routines. I am usually relaxed, but I really need that time now to wind down and when it’s extended, it’s so hard.”

Parenting with a Disability During COVID-19: Insights from the #COVIDDisParenting Twitter Chat