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

The Totally Real Special Needs Christmas Emotional Survival Guide

Isn’t that picture absurd?  A skating Santa holding up a Christmas tree like Rafiki with baby Simba, as an offering or dedication of some sort.  Perhaps he’s hoping for some happy Christmas juju to descend upon him. Who knows?  

Speaking of happy Christmas juju, dear friends with kids who have special needs, I’d love to spray that stuff all over you you with a firehouse. 

I’m reading all kinds of articles with tips for families with special needs, some are great, truly helpful. I just took a different tack yesterday and wrote one directed toward extended family of kids with special needs, because we could really stand to have a bit of the burden lifted by others.  (It’s for my paid gig, not here).

But this is for all the parents in the trenches with me. 

Things might (okay will) go awry this holiday season. Channel your inner Elsa and start singing,”Let it Go”, like right now. Put it on a repeat track in your mind, your house, your car, your phone. Play it liberally and sing it too.  Your kid melts down at the holiday concert?  A huge spill (or bodily fluid if your kid is like mine) on Aunt Betty’s Persian rug?  You’re running an hour late?  Let it go!  Stuff is going to happen. Take a deep breath and move on. 

Be direct. My sister made it easy this year by asking what works for me, but if your family isn’t there yet, don’t be afraid to say, “I don’t think that will work for us.”  I have about zero FOMO (fear of missing out), so it doesn’t faze me much when gatherings don’t work for me, but I do realize this is a stretch for many. If you’re on the bubble about whether to do something or not, jotting a quick pros and cons list can provide perspective. If it’s just not worth it, say it. If you need your host to help you make it doable, ask!
Enjoy what you can do. We have missed out on plenty over the years, but my parents and sisters make things doable, so I focus on these people who are nearest and dearest. I also truly delight in cooking and baking and making home made items as gifts. In fact, I took up many of my current hobbies because I can manage them at home with kids afoot. 

Cry about it. I’m being awfully pragmatic here, but I realize that even if it’s a simple solution to cut down on holiday jazz that it isn’t easy. You are missing out, and it hurts. Whether it’s because of medical issues or behavioral, you’re trading off something you love to streamline your life, that’s hard and it sucks. You are  the one whose child melts down at the holiday concert (whether it’s on stage or in the audience). You are the one who has to leave early for a medical procedure that doesn’t take a day off for Christmas. You are the one whose child is so overstimulated by the end of dinner that you spend the afternoon in a quiet space so the rest of the family can enjoy the day. 

Focus on your child. Yes, it blows to be the parent managing all this, but your child is so worth it. Every time you soothe a meltdown or empower your child to cope or prioritize their needs, you are holding space for your child and giving them what they need to become the best person they can be. It can be daunting to watch your friends carry on with their normal lives or complain about missing one gathering for the flu when you miss many every year because that’s your life, but your life is worthy and beautiful. Don’t ever forget it. 

Special needs don’t take time off for holidays. In fact they often ramp up.  It’s okay to be flustered or disappointed sometimes because things are simply different for you than the vast majority of people. But don’t make it a pity party, celebrate what you can. Whether that’s taking time to reflect on progress or be thankful that your child survived another year. Meditate on the blessings, the teaching and/or medical staff that has been there for you, or the family support system that you have. 

And if you’re having one of those days, you know where to find me. I get it.