I follow many special needs mommy blogs and Facebook groups. It is always interesting to watch the trends, themes, and general sentiment each group promotes. If I were to describe the tone that I see crossing my Facebook feed these days it would be a combination of the superhero narrative, and sheer anger. Many of the posts that stream across my timeline support blogs and messages that perpetuate the notion of superhero parenting and the theme of spiritual transformation along the journey. We already know that I don’t agree with those blogs as a general, though not absolute, rule.
The other theme I see is anger. A lot of anger. I get that one. I spent a long time being very angry.
One of the most angry posts I have seen in a while was a blog documenting one parent’s backlash against the advice to engage in self-care. There are tomes written about the importance of self-care for parents with special needs kids, and most of us know that we are supposed to take care of ourselves. However, for a collection of parents who have a hard time eating three healthy meals a day and getting a decent night’s sleep, such advice is hard to take, and even harder to follow. This parent’s post practically screamed her anger about receiving advice from people who had little to no insight into the chaos of her life and her difficulty with engaging in personal self-care. I understood this parent’s anger. Most of us are in the position where there are very few people who can take care of our kids, and securing caregivers other than ourselves is complicated and expensive. For many of us, any kind of ongoing and substantive self-care is a pipe-dream.
Today I was running an errand and the person in front of me was complaining about how busy they were. The cashier reminded this person in front of me that they had control over their busyness. Therein lies part of the problem. Society seems to think that we can control the content and busyness of our daily lives. Perhaps those of you who aren’t raising complicated kids can, but we who have kids with complex and severe disabilities often cannot. We spend our days providing care and responding to health issues that we may not have even anticipated. For us, any sense of control in our daily lives often is an illusion. Perhaps we have a handle on things for a while, but it takes very little to topple that house of cards before we are sitting in a heap. Which is why self-care is even more important. And yes, I know I am speaking in paradoxical terms.
For us parent with kids with disabilities sometimes taking care of ourselves means that, at least for a time, we are not taking care of our kid to the best of our ability. I know to survive I had to learn to be okay with that. There are moments when my kid has been parked in front of a TV so I could have a cup of tea and chance to catch my breath. I have sent him to respite knowing full well the care offered was second-rate to my own. You know what? Sometimes that has to be okay. In the end I decided that for me to keep being an effective parent overall I would need accept that there would be moments that my kid was getting slightly less than stellar care. What can I say, I am a realist.
To those parents who become profoundly angry about their inability to engage in self care I would say this. I get it. I really, really do. I understand your anger. I understand your frustration. I know we are telling you to do the impossible. I know what it is like to live months wondering if you would ever sleep or visit with a friend again. I know how hard it is to find someone to care for your child. My kid needs nursing level care. But you know what. Do something for yourself anyway. It is imperative that you find the time. It’s the classic airplane and oxygen thing. The plane is out of control anyway. If you don’t breathe there are at least two of you who will suffer. If you take the time to catch your breath at least semi-regularly before you crash the chances are much more likely you will both be okay.
For my self-care I play soccer three nights a week. There is NOTHING better than kicking the crap out of a soccer ball when you are overwhelmed or frustrated. My husband worries there have been moments I imagine the ball is his head!!! These days I am adding punching to my kicking habit and have taken up karate. My kids find it pretty funny. I was practicing my kata last night and my kids didn’t stop laughing once. NOT ONCE. I was actually getting a little worried they would hyperventilate. Karate and soccer not only maintain my sanity, but keep me in decent physical shape since I also happen to lift and physically manage the care of a kid who is almost as big as I am. So really, in the end, it is also in Matthew’s best interest that I kick and punch.
As Nike says. Just do it!