I’ve noticed lately that when the word “respite” is used some parents and caregivers recoil a bit. “Respite? Oh no, I don’t need that! My child is great. We’re great. Everything is great.” It’s possible that most are stuck on the first definition of the word:
“a short period of time when you are able to stop
doing something that is difficult or unpleasant or
when something difficult or unpleasant stops or
whereas the second definition, “an interval of rest or relief,” is the one we really need to be referencing.
Somewhere along the line, respite became a bad word with regard to caregiving. Not only can we have it all, we’re supposed to do it all. Admitting differently or having someone else suggest such a thing becomes a value judgment on our loved one, on our abilities, on our very selves. As parents of differently-abled children, we are always on hyper-alert for the medical symptom, the behavior, the developmental milestone, the slight or the bullying. Analyze, analyze, analyze. We don’t even know we’re doing it anymore. It’s necessary, but we need to be able to recognize it so we can turn it off when appropriate.
Remember those days of sleep deprivation when our parenting journey began? When we weren’t really sure which way was up,
found car keys in the freezer, realized after we got to work that we had on two different shoes, or drove away and left the stroller in the parking lot (oh, that was just me? But hey, I remembered the kids!). Anxiety was high in the beginning. Were we doing it right? How would we know? Now remember when we got even just a little bit of rest? It was like the sun shining down on us while the angels sang. Suddenly our brains were clear, everything made sense and we could carry on with purpose. This is exactly the same thing, hopefully without the sleep deprivation part. Caregiving is hard work and only those who haven’t done it will tell you otherwise. Maybe we allow ourselves to talk about it to those who are “in the club” but somehow admitting it to anyone else is taboo. And that needs to change. Not to throw a pity party, but to be honest. We’re all honest about the great things we get from being the parent of a differently-abled child. We can be honest about the hard stuff too.
So we’re all agreed that rest and relief are essential to our mental and physical health. It’s also good for our children. They learn independence. They build their skill sets by being around other people in a more relaxed setting than school or therapy. They get to do special activities that aren’t in the day-to-day. It’s fun! And if you have other children, they get to spend some one-on-one time with you, doing things that perhaps their sibling can’t tolerate.
But…. you don’t have a regular babysitter. Your child’s needs are so complex you can’t really trust someone else to be with them, even for a little while. You don’t have the money for summer camp. Your child is too old for an after school program. You don’t even know where to begin to look for a respite program. Your child is on a special diet. Your child doesn’t sleep through the night. You’ll miss each other too much! Whatever buts are swirling around in your head right now, they’re all valid.
Let’s look at that definition again: “An interval of rest and relief.” Respite doesn’t have to be the big night out or weekend away or summer camp. And even if you are doing those things, you don’t have to be limited by them or burn yourself out waiting for your turn to come around again. Respite can be as simple as taking the time to read a magazine. Getting back into that hobby you haven’t had time for in several years. Taking a walk around the block. Ten minutes of meditation or prayer when you first wake up or right before you go to sleep. A bit of window shopping on your lunch hour. Talking on the phone while you’re cooking dinner. Saturday in your pajamas and the heck with the errands. A tiny piece of chocolate (it’s got antioxidants!) Watching the birds at the birdfeeder in your backyard. Movie night and popcorn for dinner. Three Stooges episodes on YouTube. Pinterest. Hanging out in the waiting room here at danceability and chatting with other parents. Whatever those little things are that feed your soul? Do them. Do more of them. Keep doing them. Because we love you and we want you to be around for a long time.
Written by: Beth Gianturco, danceability parent