Self Care When You Are Caring For a Child With Special Needs

There is always so much talk about how Moms need to care for themselves so that they are able to care for their children. When you Google “Secrets of a Happy Mom” you come up with advice for everything – from new moms to moms of teenagers, and all the ways one can find happiness in those roles of parenting.

They all have a common theme.  Moms need personal time, exercise, time alone with a husband or significant other to be a whole person before anything else. It all sounds great.  In theory, it all sounds easy, seamless, and sensible.

My reality is not like that.

I wake up every morning before my kids (as suggested), but not for meditation and a quiet cup of coffee while I gaze out the window.  By the time I take a quick shower, and get organized with clothes and lunches, it is time to get the kids up and going. By the time I take my kids to school, I have physically lifted  my daughter’s 100 pound frame eight times; out of bed, into the wheelchair, into the bathroom, into her clothes, into her wheelchair again, and into and out of the car.  On top of it, I am pushing a crazy heavy wheelchair and hauling her walker.  I physically need to get her dressed, and to get her up from bed.

To transfer her and help her move.

I have friends who have kids with more involved cerebral palsy, and they have it 100 times harder. I try not to complain for that very reason.

But it’s hard, and it’s constant.  It is like the movie Groundhog Day, every single day without fault.  I silently resent (just a tiny bit) the Moms who hop out at school with their perfect little bodies and their skin-tight little yoga pants – when I feel honestly beaten down and prematurely aged, before the clock hits 9:00 am.

My daughter is delightful, and fun and awesome, and I wouldn’t trade her for anything.  But my muscles scream, and my shoulders and back ache, and I never, ever get a break.  And I accept this reality, I do.  But it doesn’t make it any easier some days.  Some days I can do it with a smile and sunshine at my back, but other days it is just plain hard.  There’s no real prize on the other side for doing it well.

The New York Times ran an article last year called “When the Caregivers Need Healing,” talking about this issue, and some of the negative things caregivers face in their own mental and emotional health while filling this role for their family.

How do Special Needs Moms put themselves first or practice all of the things they are “supposed” to do to stay strong and balanced for their kids?  How do they do all of that when their kids are so much more needy, so much more attention sucking, energy grabbing and anxiety causing than other kids?

The reality is that we literally cannot fall down on the job.  We can’t “not be there” to care for our kids.  Our children cannot do it themselves.  We have so much more reason for self-care than most Moms do.

But how to practice self-care as the parent to a child who has special needs when there’s no time to do so?

I don’t know the answer for other moms, and I would never feel as if I could give advice and look into someone else’s heart to see what struggles lie there with their own kids.  If I have learned one thing as a mom of a special child, it is to not judge what I don’t know.  I may silently curse the yoga moms once in a while, but that’s really probably jealousy at my own non-limbered skinny body.  But I digress.

For me, I have started this year with the pursuit of balance.  I have asked to step back from some of the responsibilities of my job at a non-profit so that I have more time and energy to write and focus on my dreams.  Just having less stress from a job where people were counting on me has opened up my eyes to how much pressure I was under.

When my kids are at school, I have valuable hours to do the things I have wanted to pursue and to follow some dreams that I just never found the minutes or energy to do before now.  When I run errands or drive endlessly, I am listening to books I’ve had on my list, escaping – for a few hours – into the lives of other people.  Mysteries, chick lit, memoirs – all of them seem to whisk me away for a break from the everyday.

I have made time for physical therapy for my back, and for coffee and lunches with various friends. One day, I even grabbed a salad for myself and a big coffee, and went to an afternoon movie.  It felt decadent and like a gift totally for myself.

I think as parents, as people, as special moms – we have to find the way to fill our depleted tanks.  I read something that Arianna Huffington said about how we make sure we recharge our cell phones every single night, but don’t give ourselves the same consideration.  We just let our own batteries run down without recharging.  But everyone’s “recharge” or “refill” is not the same. Some find exercise to bring them balance.  Some it may be yoga, or meditation, or massage, or manicures.

Each person has to look honestly inside to find their own.  I am working hard at finding mine.  I feel refilled when I write, when I read, and when I nap.

I will continue the search, because I believe that I’m headed in the right direction.