The entire landscape of the special needs journey makes self-care a challenge. Medical appointments, traumatic events, mountains of paperwork, and the high level of daily need for your child means that your time is more limited than the average American. If you are juggling a full-time job, other children, or additional commitments, you really start to feel the constraints. Is self-care possible for folks with special needs children? How can it be a priority when everything else feels more important?
When M was born, of course we were in survival mode. This was our third child, which is a big adjustment no matter what other circumstances are in play. At first, we were in full newborn season, with all of the sleeplessness and exciting bowel movements that accompany it. Right as I thought we might come out of newborn mode at 4-6 weeks old, M's genetic disorder caught up with her and we started having significant feeding issues. In the midst of the difficulty of spending 10-12 hours per day on feeding-related tasks for her at 6 months of age, our landlord decided to sell the house we were renting, which prompted us to move from Boston to Atlanta to at least have family support. All of this time, I was in survival mode and pushing myself to the max. In the self-care arena, I was doing barely enough to survive. I thought M's struggles were temporary, and if I just powered through this sprint, one day we could cross the finish line and recover to some type of normal. Then, I thought, I would be able to take care of myself well again.
After moving to Atlanta, we started seeing specialists because M was missing milestones. It became clear within a few months that something more significant and long-term was at play. When genetic and neurological testing started being discussed, I remember feeling a big shift in my thinking. That was when I realized that this was a much longer timeline than I was operating in. I wasn't in a sprint. I was in a marathon. And at the rate I was pushing myself, I wouldn't survive it.
From my experience, our American culture does a terrible job teaching us to prioritize self-care. There can even be religious undertones of self-sacrifice that can make it easier to justify neglecting ourselves. It certainly doesn't work well for us as individuals or a society, even in the average case. For those of us with special needs children, we are parenting little ones who will be more dependent on us in more ways and for longer than we were expecting. They need us to take care of ourselves so that we can be available to support them - not just now, but decades from now. I realized that I had to get on track with my self-care, not just for myself and for generally good purposes, but because M needs me to take care of myself so that I can be there for her as much and as long as possible.
Does self-care always feel like an option when I'm juggling three kids, 8 therapies a week, and a part-time job? Of course not. But I've realized that I have to take care of myself in order to juggle those things, both now and long-term. I want to finish this marathon well.
In Jordan Peterson's book, 12 Rules for Life: An Antidote to Chaos (affiliate link and a book I wholeheartedly recommend), he discusses this idea in Rule 2: Treat Yourself Like Someone You Are Responsible for Helping. In summary, the idea of this chapter is that it's not always easy to take care of yourself. Because we all know ourselves so well, we know our own faults, limitations, and every dark thought and secret. It's hard to be motivated to take care of someone who we don't always like - ourselves. He counteracts this by pointing out that "your mistreatment of yourself can have catastrophic consequences for others" (page 60). He continues on page 62:
"You have some vital role to play in the unfolding destiny of the world. You are, therefore, morally obliged to take care of yourself. You should take care of, help, and be good to yourself the same way you would take care of, help, and be good to someone you loved and valued."
Once you can find and latch on to that motivation, what does self-care look like? How do you work it in? I'd like to explore this more in future posts, but I'll comment on that a bit here. I am a pragmatist, after all. 🙂 We've had to make a few strategic choices so that self-care becomes more realistic. We lean heavily on family and friends to help us juggle where they can so that we have a bit more bandwidth. We minimize commitments to activities and only choose the ones with the most benefit to our family. I have a list of things that mean self-care for me; I do my best to get in at least a few each day. That can be things as simple as a cup of tea, a piece of chocolate, a favorite show, or 10 minutes of quiet time. It can also be longer things like working out, time with a trusted friend, a bubble bath, or a date night. Find the things that help you feel grounded, calm, and more like yourself. You are, first and foremost, a human. Yes, you are also a special needs parent, but that is not the core of who you are. Find the things that most help you remember who you are as a person, not just in the tasks you complete or the roles you step into each day.
We have important people to take care of, including ourselves. We are important to other folks, and we are responsible for taking care of ourselves so that we can take care of them.