autism · Down syndrome · family · parenting · special needs parenting

Let’s Talk About Self-Care

It’s a topic I go round and round with; self-care.

I love the idea of self-care, putting my oxygen mask on first makes perfect sense, if it was actually that simple. The problem is that there is nothing about parenting a child with complex developmental, behavioral and medical needs that makes the oxygen mask analogy work the way it’s suggested.

Having worked with oxygen as a paramedic, if the person receiving it exerts themselves, they need more oxygen. The delivery system is cumbersome and the person is tethered to it in order to get the benefits of the blessed gas. That makes for serious limitations. To put on your oxygen mask adds the burden of obtaining and maintaining the equipment necessary to do so.

Today is the first day in months that I haven’t felt like I have more to do than I could possibly accomplish. Sleep was pretty decent last night, I was only up once with Ben, and this is the first week of 2019 when Ben has no appointments and, unless something completely unexpected happens, no snow days. That means I have a whole week to get work done, work that has been waiting since last year to be touched.

I’ve often live in survival mode. Treading water so to speak. Prioritizing self-care feels like lugging around an oxygen tank in order to keep my oxygen mask on. If you have never tried metaphorically wearing your oxygen mask while treading water, I don’t recommend it.

Like when you’re broke and need gas to get to work to get a paycheck and you put in only as much as is absolutely necessary and just pray it gets you through the week.

Or when you need to get groceries and have to wait for the money to hit the bank account so you make do with leftovers and the odd items at the back of the cabinets for days on end.

Most people have been there (if you haven’t, stop right here and steep yourself in some serious gratitude), and parents, especially moms, of kids with complex needs, live there when it comes to meeting our own needs.

I do what I can. I get outside to soak in sunshine, and field the never-ending phone calls from doctors, teachers, insurance, and more on my little outing.

I take short little trips to see family and get away, clearing my schedule and notifying as many people as possible to not contact me. To do so I have to cram in impossible amounts of work before and after and still manage urgent communications, which often have the bonus of being at odd hours if I get to visit another time zone.

Please hear me, I despise complaining. Kvetching feels dirty to me. I strive for resilience and optimism and strength. I bathe in gratitude for what we have on a moment by moment basis. I find joy in the little delights of the day, like when my pileated woodpecker friend visits my suet feeders or the belly laughs over the antics of my kids and pets and even my husband. There is so much that I do to keep keeping my head above water.

I’m not a whiner.

But as I tread water and continue to do everything in my power to keep my nose out of the water, my oxygen tank was kicked off long ago as more of an anchor than anything beneficial.

Having the resources for self-care, much like having the bank account that allows you to fill the gas tank all the way up every time it’s low and load up a shopping cart with goodies as the need arises, is just not something that everyone can just do. Not everyone can find the time, money and energy necessary to take care of herself.

And being told how important it is doesn’t help. I’m not diving to the bottom of the lake to retrieve my oxygen tank, that’s precious energy I can’t afford to expend. Every single fiber of my being is dedicated to staying afloat.

I like to wrap up posts neatly, whenever possible on a lighter note. I’m not comfortable being this vulnerable and blunt. It’s nice to leave my readers with a warm fuzzy for their day. But this is truth. Not just for me, but for so many of us. We’re out here just keeping on. I just want you to take a minute to see us.

parenting · special needs parenting

When You Can Never Win The High Stakes Game

It’s a high stakes game, this parenting gig. We have precious little folks that we’re responsible for turning into responsible adults, and there’s no single right way to do it.  With all of the factors going into human nature and nurture, getting it right for each child seems to be a crap shoot at best.

Then we add in developmental differences and the learning curve steepens, necessitating therapies and strategies that typical parents never have to consider. Or even the odd combination of phases that occur when cognitive development is delayed. For example, Alex is 15 years old, and is mature and savvy about many things, but has just discovered lying. You know that clumsy way your first grader lies to cover for his transgressions?  We’re right there with a 15 year old.   It’s just as annoying as when a six year old gives it a whirl, but all the more ridiculous with Alex’s man-voice. Just chalk this up to another parenting issue I never saw coming.

Overall Alex is easy though. He’s pretty straightforward, and super fun and funny. His quirks just add a little dynamic to the game.

Then there’s the truly complex child.

I took Ben to a new psychiatrist last week and she was stymied. She called him bossy, challenging, severely hyperactive and puzzling. And that was only a snapshot from 30 minutes in her office. Maybe it was the complete meltdown that resulted when she told us to go, then called us back into her office that bemused her. Or it could have been him splaying full out on the floor of the waiting room when our exit was delayed. Or any of the couple dozen uncomfortable interactions in between.

In this high stakes game I don’t know how to win. My child leaves experts at a loss.

I know he needs me to stay calm, but sometimes I lose my cool.

I know he needs structure and routine, but how do you stick to it with appointments and phone calls and all the necessary behavioral interventions?

I want more than anything in the world to do the best and be the best for him, but I swear it’s like being an actor and switching from “The Jungle Book” to “Rain Man” with “What’s Eating Gilbert Grape” running constantly in the background.  All along I feel like I should be Mary Poppins.

I can’t keep up. 

I can’t switch gears fast enough. I have a hard time hugging when I just got kicked in the face…even though I realize he needs it. I have a hard time playing after recovering from an epic public (or private) meltdown. And that’s not even taking into account the learning and medical needs.

How do I keep up, let alone maintain the therapeutic environment he needs to thrive.

When I write it out I realize how impossible it is, yet I sink into an abyss of guilt when I fail to be absolutely everything he needs, plus parenting my other children.

This is no attempt to garner kudos or warm fuzzies, there is nothing anyone can say that can change the truth.  The kind words are nice, but it doesn’t change our reality.

 

Yet we carry on, ever moving forward, and keep trying, trying, trying.  He’s our baby.  How can we not?  How can we ever stop trying?

Someday, maybe, we’ll find someone who can really help.  Each day we get up resolving just that.