KID KOAN

• Would you like to watch people on tv watching tv?

SUGAR, DEAR

You do keep Dear Sugar in your bathroom, yes? So that when you wake up first thing in the morning and think “I can’t do this day,” or when you get that precious three minutes where you sit on the toilet ALONE pretending to poop, you can take the book in your hands and Sugar can be your oracle and give you exactly what you need to open the bathroom door and emerge human and more whole just by opening up the book and reading? 

If not Dear Sugar, what is your DEAR? What shows you TRUTH, on a bed of laughter, with a chiffonade of tears? HOPE, wrapped in brutal honesty, with a core of sweet, sweet love? PERSPECTIVE, nestled in a can of whoop-as$, with a side of I-get-it-though?

Ideally, everybody should have something like this, a tiny escape-comfort that is always there when needed. Maybe for you it’s music, or cooking, or...? Books have always been that thing for me, as they are for my son. Even at parties. 

I was recently invited by a Very Big Deal Agent to write a book proposal for her agency. I am still struggling with the requirements of the proposal, above all, the selling-of-self. But I think that very quality of being there for others in a very honest way makes this writing worthwhile, and makes a book a valid proposition for this blog. So I am doing my best to get it done.

At the same time, summer is looming. I see people posting on facebook about how they “can’t wait,” and I try to share their enthusiasm, and heaven knows I want my children to have those idyllic summers of which people speak, but—but...: I’ve never had a chance to not be working in the summer, which makes things sometimes quite rough. This year I at least had the foresight to coordinate what few camps the kids attend (hey, both kids in camp during the same week: my big insight from summer 2014!), so that I will have some time to work while both kids are having summer fun. (Have people noticed that camp often costs more than one can earn? What’s up with that?)

Like so many of us, I also hope that I too will get some glimpses of summer fun. That during the times when I am with my kids, I will actually be with my precious kids, rather than being physically present while mentally worrying constantly about keeping us afloat or getting other stuff done, such as The Proposal. I guess that would be a form of practicing mindfulness.

Ever wonder, though, why it’s so hard to remember to be mindful? Perhaps it’s because one’s mind is...full? In those full-brain and heavy-heart moments (big and small), I know Sugar will help. Mostly, she’ll remind me that it’s on me to make things right, to feed the good wolf, to see clearly and be present and not take things personally. Basically, you know, to be mindful. But she says it in a way that I can really hear, my dear, dear Sugar does.

Well, my friends, I am heading out now for the last-day/half-day* pickup rounds. Here’s wishing you plenty of whatever Sugar-esque entity feeds your soul this season and beyond. Summer...starts...NOW!

Love,

Full Spectrum Mama

* Wee tad of a rip-off there?

A SENSORY PROCESSING/NEURODIVERSITY MANIFESTO

My challenges have always been social–neurological–ethical-familial, never academic. My first encounter with academic challenges came when I – in my third and final (and, finally, successful [after a year as a runaway in the East Village]) attempt at high school – landed in a struggling Quaker boarding school that accepted a lot of students with learning differences. The dean there, the man I now call “Dad,” shepherded his motley crew of misfits with infinite love and respect. Students like me who were fleeing troubled, if wealthy, families, were treated just the same as wealthy, healthy, happy-familied students, scholarship students, “learning-disabled” students, all combinations thereof...all students, period. That is to say, equality really happened under his watch.

Until I began raising my son, who happens to have some learning differences, I actually never knew that the official term for such differences is “learning disability.” You see, Dwight, our dean and my “Dad,” referred to students who learned differently from the "average" student as having...wait for it...”learning differences.” And I spent most of my life thinking that this was how everybody thought about the matter.

How much did that linguistic switch mean to those students, my friends, some of whom had felt “less-than” most of their lives because they didn’t process and/or express information in just the same way as everybody else? You can bet it meant a great deal.

G’s early life involved quite a lot of testing, always at the request of his teachers. I began early on to use different terms for many of the labels that were used by professionals for my son and, later, me. I’ve suggested -- whenever the online or in-person conversation comes up -- that we use the phrase “Sensory Processing Differences” in place of “Sensory Processing Disorder,” and people have generally agreed. I do understand that there are contexts in which a disability label may be more effective in managing our differences. However, for the sake of our selves, and our communities, and our children, I contend that the following labels need to be changed, for daily use, if not for services and adaptations (and this is by no means a comprehensive list, just getting this here manifesto going!):

Sensory Processing Disorder              to                     Sensory Processing Differences

Autism Spectrum Disorder                 to                     Autism Spectrum

Accommodations                                to                     Adaptations

Disability                                             to                     Diffability 

Disabled                                              to                     Differently-Abled

Yes, we are different. That doesn’t always make us fundamentally disordered or syndromed.

We are all different. All that difference is not the same. Some of it is MUCH harder, because this world was constructed primarily by people who are embodied and think in “normal” ways. The adaptations some of us may need are framed as “special” “services” because of the way this world is designed – and for whom – NOT BECAUSE THERE IS ANYTHING WRONG WITH US.

Here’s an example I see as very simple and non-loaded: because of my Sensory Processing Differences, when I go into a big box store the artificial scents used in cleaners and scented candles etc. give me an instant migraine. Does this make me defective? In my humble opinion, it makes me more of a canary in a coal mine: Nobody should be breathing those chemicals...and it’s not “disordered” to know so in a very visceral way. 

Another thing about language: it’s okay to ask! There’s been so much discussion, much of it rancorous, around whether or not to use person-first language. How about using the language that the person/people in question prefer/s? I, for one, aim to use language that is respectful and egalitarian. When I speak with others, I am willing to use the language they deem respectful and egalitarian, so long as it does not demean me.

Changing the ways we talk about difference are an important step toward healing this world so that we are all included in the spectrum of equality. Although there is some weight to having “differences,” the word itself also implies variety and, in some important ways, validity. We must continue striving to speak and write in ways that are increasingly fair, as language evolves to better fit reality..

You’ll note I’ve no cute rainbow graphic for this Full Spectrum manifesto. (Please see Figure I.)

                                                    Figure I – No Cute Rainbow Graphic

...because the way we talk about stuff is serious.

Love,

Full Spectrum Mama

Welcome to the Sensory Blog Hop -- a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it's like to have Sensory Processing Disorder and to raise a sensory kiddo!Want to join in on next month's Sensory Blog Hop? Click here!

An InLinkz Link-up

POSITIVE PARENTING: FUN!

Just a little example of PP from the Full Spectrums:

Pardner used to be a dawg. Not literally, but – let’s just say he spent his twenties, most of his thirties (there was that...brief first marriage), his forties...even the first part of his fifties, as a single, hunky, zest-for-life-filled, man-about-town chef who had a great appreciation for female beauty of all sorts.

And I do mean all.

When we first started dating, I asked him this highly original question: “What is the most important quality you value in a woman?”

“Fun,” was his simple answer.

Well, I felt very superior when he said that. How trite, I thought. How superficial! And how hard can it be to have fun with no kids, a thriving/rewarding/creative business, excellent health, and that special freedom of the non-married to extricate oneself from any less-fun relationship? A person who thinks fun is the most important thing must be pretty durn trifling, no?

Then I got to thinking about it. Here I was, newly-divorced and unemployed as yet, with two young high-needs kids (neither had labels yet, but the high-needs part was Not Subtle). I was shattered, really, at the time. And yet there he was...into me in a big and, to him, very new way.

Maybe he meant something different by “fun” than I thought.

As we got to know each other, I began to see how fun actually encompasses everything I truly value in life. It dawned on me that a most precious sort of fun was our finding a way to laugh together while courting despite my being in precarious mental, physical and fiscal health.

Fun isn’t just everything always being easy, lighthearted, and effortlessly sparkly all the time; sometimes fun is finding the sparkle in the (heavyhearted, hard, crusty, messy) mud, my friends. It’s choosing to giggle when you get to that giggle/sob crossroad (or at least to gigglesob). As well, fun is exercising our innate capacity to recognize and appreciate that sparkle, that giggle...

Now, we Full Spectrums hold FUN as our High and Sacred Family Virtue. Fun is finding a way to ENJOY each other’s company – even just for a few minutes, even after a crapola day.  Fun is being GRATEFUL for the kids you have and the family you make, whoever and however they are.

Yeah, this isn’t easy all the time; heck, it’s not even happening most of the time. But when it is? That’s fun. Thanks, Pardner!

Positive parentingly,

Love,

Full Spectrum Mama

#Positiveparentingday is the brainchild of the Introverted Matriarch. <3