Self-Care for Parents of Children with Disabilities

Self-Care for Parents of Children with Disabilities

Young woman arranging plants in her rooftop garden

By Lynn B. Johnson, MFA, APR

I’m not a first-person writer, but I’m an expert in self-care. My eldest was diagnosed with a developmental disability at age 17  — late enough that for years, we just thought he was lazy or unmotivated. The diagnosis helped us understand household stressors more than I imagined.

Here’s what I learned from the second MFA (Make Fun Again) I earned during that time:

Technology: The best thing I own is a pair of bone-conduction headphones. The no-name version I bought a couple of years ago cost less than $30. They rest on either side of my head, mostly hidden by my hair, and send sound directly to the inner ear instead of going through the eardrum. Because they don’t block the ear canal, you can still hear what’s going on around you. Also, my friend who uses hearing aids tried my bone-conduction headphones and they worked for him without interference! #AccessibilityBenefitsEveryone

In-house hobbies: Hobbies that benefit more than just you are a great way to keep it together. Particularly when they are also household arts: sewing (the VisibleMending subreddit!), fiberwork, playing ukulele. Personally, I enjoy cooking. Sourdough bread takes a max of 15 active minutes at any time and is pretty forgiving even if you can’t manage that. Once you have a starter — ask your Facebook friends — you can make tasty, preservative-free food while also making your house smell like fresh warm bread. Win-Win. Cost: flour (I like King Arthur, and their Sourdough English Muffin recipe is #1 in my heart).

Online: Stop the doomscrolling. Find a game or other app that you can get good at; Candy Crush doesn’t count. I like online poker, which I play with fake dollars. Stream new-to-you stuff instead of relying on the old to keep your queue, and by extension yourself, fresh. I watched all of Grey’s Anatomy during COVID; these days, it’s Private Practice. Oh, and instead of online news or social media, I look at listings for cute convertible cars I won’t buy, or sparkly jewelry that I match to my different friends and send them the photos. It’s like window shopping; I call it “black-mirror shopping.”

Creatively: Journal. Write a haiku about how the laundry and dishes never end. Write jokes about how hard your day was. Sing a song about how it feels to drive away from school with nobody in your car but you. Dare to be silly.

Accountability: At the end of the day, it can be hard to remember something good you did. Not remembering the good things is what leads to and/or compounds burnout. So at least make a point to satisfy yourself, and then, remember you cared enough for yourself to do so. Like the saying goes, you can’t pour from an empty cup. “I read three pages of a book” or “I learned the bridge of ‘The Rainbow Connection’ on my ukulele” is better for you than having not. So, your final 5-second task: write the day’s success(es) on a new Post-it Note on your nightstand.

Keep it up and you’ll have a stack of good memories to smile at amid it all.

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