Since the pandemic began, countless conversations have taken place between parents — friends, coworkers, journalists, blog-writers, and others — about the effects of suddenly having to act, as one writer put it, as both “1960s parents and 2020s parents all at once, a nightmare mash-up in the space-time continuum, brought to you by a wormhole from hell.” For parents raising children with disabilities, that may be putting it lightly.

The effects of this overwhelm are hard to quantify — especially for families whose children have big behaviors, medically complex diagnoses, symptoms that depend on in-person therapies, or for those of us that rely on supports like IHSS and respite that, for a variety of reasons, just aren’t available to us right now. As most of us know, we are at our best when we have the support of our village — and right now, that village is largely on the other side of a computer screen. 

If we’re going to talk about this in a realistic way, we have to acknowledge the elephant in the room, which is that parenting a child with significant disabilities is hard, and not everyone is going to be able or willing to bear it without help. We have to allow ourselves the right to say that we aren’t up to the task: that we need a break, we need a surrogate, we feel that someone else will be better able to take care of our child/ren for a while. In pre-pandemic times, this could both be small — sending a child to school for seven hours of structured time during which both parent and child can work and learn and be independent of each other — and it can be large: choosing a residential living community outside the home. Disability affects one in five of us, and yet we continue to hold ourselves to standards that often aren’t achievable without real, meaningful help.

And when I say “help,” I don’t mean a support group or a cup of tea or even a hotline — while those can be helpful in the moment, they aren’t sustainable solutions. 

While few of us want to confront the issue of overwhelm or discuss it in real terms — for what we fear it might reveal about us, or for the very real lack of options the conversation could expose — we increasingly need to find better ways to survive this time, unprecedented in modern history, in which everything (jobs, sanity, our children’s education) seems to be on the line. (One mom and advocate raising a teenager with severe autism put this in pretty stark terms recently.) So what resources are available to parents who desperately need help?

While there may not be a satisfactory answer to this question, to start the conversation we reached out to Barbara Joffe, who runs the Special Needs Resource Group and has a wealth and diversity of experience supporting children with disabilities and their families. Here are some of the points she raised:

  • Give yourself permission to make mistakes, to feel the feelings that you’re having. Then move on to something proactive. For example, instead of staying up late finishing the homework your child didn’t do, let’s focus on asking the IEP team for compensatory hours and ESY this summer. Instead of fearing an uptick of COVID cases because of protests, let’s talk to our children about tolerance because they’ve got neurodiversity.
  • There may not be the resources we want right now, but there are solutions. If you have a partner, consider a shift schedule so that each adult can provide the other with a little respite. Take the pressure off cooking every night, support local restaurants, and pick up or order takeout once or twice a week. Clean the house less than you think you need to.
  • Consider giving yourself a respite from responsibility. You may not feel successful right now with your work or with your kids — and seeing where they are academically compounds the overwhelm. Remember that there will be a time when school resumes in person, and that we are all overwhelmed. Asking for a little latitude at work might be less of a big deal than you think. 
  • While those of us with medically fragile and immunocompromised children are terrified of having respite providers in our homes — and some of us carry guilt for needing respite for ourselves in the first place — remember that you CAN get respite even during a pandemic.
  • We all need to be part of a community, a safe place where we can reach out without shame or worry. Organizations like Special X and others are a phone call, text, or email away. Don’t wait to reach out to family, friends, and other support networks when you need it.


As we live and breathe through these WTF moments, let’s try and support each other as best we can. What resources — if any! — have you found that have made a difference for you?

 

Jennifer Alise Drew
Head of Editorial

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