Privacy. Boundaries. Respect.
A MotherBlogger Tries
I try to walk a line of careful consideration regarding my family’s privacy when approaching writing for the site, especially regarding my youngest daughter, K. For those of you new to the House of Bubbles and Chaos, K (aka Kaos1Not to be confused with “chaos”; although they may often be found together, they are not one and the same.) is 8 years old, autistic, and has several co-occurring conditions that strongly impact her functionality on both an educational and medical level.
K is considered non-verbal, meaning that she doesn’t speak in the traditional sense of vocalizing her words and that her expressive language skills are limited. (You can read more about non-verbal autism here.)
I Speak on Behalf of My Children
I Don’t Want to Speak over Them2Yes, I have two daughters; the oldest (aka The Teen) is nearly an adult now and seems to be able to handle her business independently for the most part.
As a mother, it’s my job to love and protect my children, and to speak up and advocate for their interests until such time comes that they can speak up for themselves. I try to be mindful to respect them as individuals, to not violate their privacy or embarrass them (no more so than any other proud mama, at any rate), and to not overstep the boundaries of sharing stories that aren’t mine to share.3Mothers, you may already know, are natural braggarts when it comes to our offspring. We will yammer on with endless passion about our babies and their latest happenings at any given opportunity, to an almost insane degree; if you don’t wish to be cornered with child-related chatter at your next social function, take care to avoid subject matter that may trigger the Mother Switch.
Now, as a mother who’s also a writer, abiding by that ideal has been challenging. I mean, writers are natural-born thieves to start with. Stealing stories is what we do, it’s a part of who we are. We rob from the richness of the universe and those who dwell in it and we pour the golden narratives out on the page, offering up our interpreted insanity to any poor soul willing to read it, hoping they’ll find some value in it somewhere. It’s a compulsive kleptomaniacal conundrum; once you start, it’s real hard to stop.
Parent Blogging: Haters Gonna Hate
I’ve spent the last few years with my ear to the ground, listening to on-line herds, trying to get a sense for where people, autistic and otherwise, stand on particular issues concerning those who are actually affected by ASD4autism spectrum disorder, developmental delays, and other various conditions. I’ve tried participating in a few discussions, but mostly I’ve just lurked, opting to stand back, listen, and observe.
Special Needs Parents and Social Media
Haters Say What?
I’ll spare you the gross details.
There are people who seem to think special needs parents are whiny little bitches, especially autism parents, and most especially parents who write about it. The phrases “playing the victim card” and “poor me” and “attention-seeking” get thrown around a lot, I’ve noticed. As parents, we’re encouraged to listen and learn from actually-affected communities but often are met with disdain and disrespect when we try, and it ultimately discourages us to discuss our experiences, feelings, and views publicly 5Now, there are times when shutting down those conversations is 100% appropriate; I’ve seen some nasty back-and-forths transpire between people. I intend to return to that topic another time so we can talk about that with more depth and less distraction. —which is unfortunate, as this “sit down and shut up” attitude shuts down lines of communication, prevents learning opportunities, and further isolates people in an already isolated and stigmatized community.
Special Needs Cargivers
Meeting in Secret
And so, rather than slapping a target on our backs, many special needs caregivers run to the corners of the internet. We meet in secret in “safe spaces”—hidden online communities accessible only to those who are in-the-know; membership is extended by invitation only. We come together to feel accepted and unjudged. We share our cheers, tears, and fears. We lift each other up. We rave and we rage. We vent. We share. We learn.
It took me some time to find the group I’m a part of, only having stumbled upon it much by accident some years ago (and some years after having K). If I had found them sooner, maybe, just maybe some things could have been prevented.
If I hadn’t found them at all…
Well, I don’t like to think about that particular “if” much, but it urgently underscores my “why” for the existence of Bubbles and Chaos, helping justify some of my compulsive anecdote-thievery.
Over the last few
And I do have to share. Haters be damned.
Because 2 years ago, a mother shared a picture and a story in a secret digital room.
It sparked a discussion.
And it likely saved my child’s life.
— To Be Continued —
Perhaps you’d also be interested in reading the Mr. Universe series we’ve included below?