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.

advocacy · special needs parenting

How powerful should a certain word be?


A cluster of my most used words on Facebook.  I wonder why Meg and Ben aren’t there…

Words.  Words are the reason I’m here blogging.  Words matter, words have power.

Coming up on March 1 is a day dedicated to ending the use of one word.  It’s called “Spread the Word to End The Word”.


The word in question is the “r-word”, retard(ed).

  1. datedoffensive
    less advanced in mental, physical, or social development than is usual for one’s age.
    • informal offensive
      very foolish or stupid.
      “in retrospect, it was a totally retarded idea”

But I’m not certain about any of this.  I’ve written about this before, but I think it’s worth repeated discussion.

First, it’s important to say, that unless you are in private, you don’t know who hears you.  As for me, I have decided to guard my own heart and avoid allowing the word to hurt me, but I don’t get to decide how my kids do or will feel about it if it’s used in front of them, or worse yet, as a bullying tactic.  I also remember all to clearly those early days when I had yet to reconcile the word “retarded” to my child with Down syndrome.  That precious face, those almond eyes, his little poof of hair.  I had nothing but pure admiration for him, and many years later I still remember the sting of hearing girls in a dress shop refer to something or other as “retarded”.

It was soul crushing.

That was one of several incidents which led to my choice to step away from giving more power to a word than it deserves.  I simply cannot be caught in the crossfire of teenage conversations and allow their word choice to ruin my day.

Alex, between 9 and 12 months old. A better mom would remember…hur

BUT, and it’s a big but; if there are other words which would suffice, must we use a word that offends; a word that hurts?

If you do a Google search on the word “retarded”, and click “images”, this is what comes up.

Is this a stereotype you really want to perpetuate?

The face of Down syndrome is largely synonymous with retarded, and if you go by these graphics, it’s not a benevolent association.

However, words like “idiot” and “moron” are commonly used with absolute zero pushback.  Indeed, even “101 Dalmations”, a Disney movie, has a villain who freely uses the word “imbecile”.Below is a quote from the show “Murdoch Mysteries”, set in the late 1800’s.  (full transcript here)

I find it very hard to believe such a precise model was built by an imbecile.

Oooh. Sir, uh, I believe people such as Lydia are no longer referred to as “imbecile”.

It’s felt to be demeaning. The correct term nowadays is “moron”.

So how much power do want to give the word “retard”?  How much power to you want to give it?

If you use the word in public, would it matter to you if the mother/father/brother/sister, etc. of a person with cognitive impairment heard you and was crushed?  What if it was a person with cognitive impairment who heard you, and was crushed?  Would you be proud of your child who said it?  What if they were caught saying it in school?  Or using it as an insult or to bully someone?  Where is the line?  Where is your line?

I post this as a conversation starter.  I’m not jumping onto the “end the word” bandwagon, because I think there’s much more nuance and minutia to it than just ending a word that’s been in the English language for centuries.  What do you think?