I’m going to write about what families with special-needs children do.
But before I get into that, I’m eulogizing the beautiful weather which has filled my home with sunlight and the dappled shadows of the bright yellow cottonwood leaves outside. We’ve reached the cusp of the lovely fall weather. It’s about ready to be blown out by something cold and wet. I’m not ready for this, mainly because I spent the last month being sickly indoors. I didn’t get my fill of our temperate October.
The imminent change in weather has me waxing nostalgic for fall. Fall is still here, but it’s morphing, so I am already lamenting it. I’m lamenting the end of the season when the boys play happily and at length outside, as I’m also mourning the option of leaving a few windows open for fresh air to cleanse the stinky house.
But I’m not entirely mournful. I sometimes surprise myself by summoning the perspicacity to figure out something meaningful. I did this recently. I figured out what special-needs families do.
You see, I run in some interesting circles where I meet people with disabled children. There’s my online support group, my real life support group, plus myriad friends who like me have large families which include a child (or children) with special needs.
As much as a family touched by special-needs may appear basically typical on the surface, said family is actually nothing close to being typical.
They are different. We are different. I’ve been mentally compiling a list of the differences. I could outline them for you in a tidy list, but there’s no need because the whole list boils down to one central factor.
Here it is. Are you ready for it?
Special-needs families are trying to survive.
It’s one little word and one major concept: survival. Just staying afloat.
It’s a stark contrast on social media: there are the moms of special children discussing feeding tubes, seizures, daily meds, oxygen, hospitalizations, appointments with specialists, insurance snafus, and guilt. Or like me, they are discussing behavior death spirals, nonverbal child meltdowns, IEP meetings, and Code Browns.
It’s less about vacations and home renovations, and more about therapy and sibling dynamics. Less flourishing; more hanging on by the fingernails.
A recurring theme among many of my online support group friends is the financial devastation which so often accompanies having a special-needs child—it’s the elephant in the room for many special-needs families, hiding in plain sight from friends and family who may be unaware it is there.
When special-needs moms tag themselves at a location, it’s likely at the children’s hospital.
This is not a condemnation of what people put on social media. I peruse it. I consume it. I think most of it is great.
This is just me finally putting my finger on a concept that has alluded me, but which I am beginning to understand.
The difference between my family and so many others is this: we are desperately trying to survive. Non-essentials typically fall by the wayside.