The Real Meaning of Self-care for Special Needs Parents

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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Self-care for special needs parents is not the same as it is for other parents. I’m over reading articles that advise spa weekends, groups, and impromptu getaways as productive self-care.

Like many things for special needs families, modifications are also needed for self-care, and please allow me to enjoy it in a realistic way.

If ever there was a time I needed realistic self-care, it was last week.

Round and round we go

My 11-year-old Angel, Juliana, was sick during Christmas break. She got her COVID-19 shot a few weeks later. Unfortunately, this past week, the sick bug paid her another visit. Her doctor thinks it was a reaction to her shot.

Juliana is not an easy patient. So, with her getting sick so soon after the last bout of illness at Christmas, I knew I needed to conserve my energy. Although my husband works from home, I took off work last week so I could manage her care and recovery. But honestly, I had scarcely recovered from her being sick at Christmas.

Because I knew it would be challenging, I simply put everything I could on hold. Throughout the week, I took some much-needed naps. Normally when Juliana is sick, I’ll work on a project around the house for a distraction. I couldn’t muster the extra energy for a project this time around, so I did lots of vegging out instead.

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My husband came into the room one day while I was taking one of my breaks to veg out. I was just sitting there and staring, somewhat blankly, trying to clear my head. When he asked what was going on, I said I was taking some time to do nothing.

He walked away with a smile and said, “Don’t let me interrupt you.” There were many moments like this that week when Juliana was sleeping or content. It was good to take some breaks when I could.

One afternoon, I cocooned in Juliana’s safety bed while she played on her iPad. Being in her room is always comforting to her. Normally, I’ll sit on the floor while she hangs out, but I was so exhausted that afternoon, I just wanted to lie down. I didn’t go to sleep, I just lay there relaxing and looking at the pretty lights in her room.

realistic self-care | Angelman Syndrome News | Sabrina snaps a photo of her daughter's bedroom while Juliana sits on the floor with her iPad. The light green room features twinkling lights, butterflies on the wall, a foam alphabet mat, and lots of toys.

A room with a view. Juliana plays with her iPad while Sabrina enjoys the relaxing lights. (Photo by Sabrina L. Johnson)

Do what you want to do

I know these things aren’t very fancy or exciting, but they helped me cope while taking care of my kiddo. I think a lot of self-care articles miss the message that self-care can be little things, too. Having family or a helper come into your home is not always realistic, either, so doing something that works for you — even if it’s small — matters.

Near the end of the week when Juliana finally started to feel better, I wanted to do something a little more special for myself. I decided to go to the movies. Alone. I contemplated inviting a friend, but I just couldn’t manage coordinating times or other meetup details. By going alone, there was no one to please but me. Again, this is an example of realistic self-care: putting myself first for a little bit.

Catch a falling star

The movie ended up being way too long and much too slow. Truthfully, I was exhausted when I left home. But going was really about getting out of the house and doing something just for me. 

Doing things like this is realistic for a caregiver in my position. Most days, I have snatches of free time here and there, but they’re not very long. So when I’m also taking care of a sick child, there’s not a lot of energy for much else. I chose a low-energy self-care outing that was perfect, despite my disappointment in the movie.

Special needs parents don’t always have the luxury of racing off to a spa or enjoying a girl’s weekend. Our responsibilities are mounting and our time is tight. So, when I can sneak in little doses of respite, they help balance things out. And for those times I can’t sneak it in — well, those beautiful lights are still twinkling in my mind.

Note: Angelman Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Angelman Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Angelman syndrome.


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