Tuesday, July 21, 2015

MORE OR LESS

We’re more and more aware that our sensory sensitivities are intricately interwoven with our mental, emotional, physical, and neurological proclivities. This holds equally true – in very different ways – for my son and me.

Just as I often suspect I feel “too much” as compared to others, I think too much as well. Here’s an example: I was in a local coffee shop, reading a sign on a muffin: “Uni        Corn Muffin,” it read, with the “Corn Muffin” part all typed and official and the “Uni” handwritten.

I began to consider this puzzling marker...Did it herald some sort of prestigious, single-source, locally-farmed corn? Just one particular type of corn, a Silver Queen or Butter n Sugar perhaps? Or were they referring, trendily, to “uni” as in sea urchin?

I definitely didn’t want that!

“Um...what does that mean?” I asked the incredulous cashier, pointing to the sign.

“Unicorn?” she said, with pity.

Oh.

Pardner asked me not long ago, “When do you decide to put on lipgloss?”

I think he expected an answer along the lines of, “When I don’t have any on.”

I, however, gave him a very long, involved answer, touching upon the vicissitudes of being a ghostly-looking white person, what sorts of textures there are in lip things, the many, many sensory and chemical qualities that can be wrong with various lip-related products, what makes for a good lip gloss, and, most importantly, how incredibly painful it feels for me when my lipgloss wears off in even a tiny part of my lip...


                                              Figure I – Amount of Dry Lip That May Lead to Crisis

There’s a potential world of pain in a dry lip, and I say this as someone who bears the chronic pain of rheumatoid arthritis with nary a whimper (rheumatoid also brings me raynaud’s syndrome, which adds to dry lip – help!). I say this as someone who has lived quite a life and is amply endowed with “perspective.” I am pretty butch...but don’t leave me stranded without my chapstick. Burt’s Bees original, to be precise, with the Lip Shimmer on top.

Some of you will be reading this aghast. Indeed, I might be called an over-thinker, and/or an over-feeler by many, be it regarding muffins, lipgloss, or just about anything else. Others will be nodding along, having experienced life with sensory processing differences.

I am not saying people with high physical sensitivities necessarily have high emotional ones, just that our physical, emotional, neurological, intellectual, and all other “parts” are so intricately related. Sometimes our “parts” complement each other – and sometimes they exacerbate each other. We notice and feel and think and so on, more or less, more and less, more and more, less and less....It’s part of who we are.

Take my G, he’s a smart, caring, and thoughtful giant little dude, but, as I have mentioned before, he wouldn’t notice if there was a pound of schmutz on his mouth. In sensory processing lingo, he’s an “under-responder.”


                                    Figure II – Putative G Mouth: Yes to Schmutz, No to Crisis/Cleanup

Perhaps partly because of this less-sensitive-to-irritants way of being, G is so relaxed and natural about life. He’d read “unicorn,” no problem. He has a carefree heart. He feels a lot, but his feelings, so far, are remarkably positive. In contrast, I have to work pretty hard to stay upbeat, because of all that’s literally weighing on me. Being more sensitive overall – an “over-responder” - has a lot to do with this need to make quite an effort just to function at times.

G’s executive functioning is almost non-existent, and I know this, along with some social differences typical of neurodiverse persons, as well as non-noticing of schmutz (and other hygiene issues), will bring him many, many challenges in the years to come. But how about his EQ (emotional intelligence)? Off the charts. What balance and wholeness this seems to bring him!

Just yesterday, G pulled his socks on over soaking wet feet without screaming. In fact he was smiling and chattering while he did so. How liberating would that be? I wouldn’t change either of us  – and I am not crazy about the judgy aspect of terms like “over-“ and under-responsive” – but I do find our differences fascinating. I watched him doing this little thing I could never do, and I marveled at the range of ways of being whole, at how our mores and lesses -- RATHER THAN MAKING US MORE OR LESS -- make us, us.

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!


Monday, July 13, 2015

THE LIEBSTER AWARD

My friend Kelly Dillon, over to the Eating Off Plastic, has kindly nominated me for The Liebster Award!



This award was created to grow the love amongst bloggers, and so I shall pass it on, as politely yet firmly demanded.

THE RULES OF THE LIEBSTER AWARD:

1. THANK YOUR NOMINATOR:

Thank you, Kelly Dillon. I remember the first time I fell upon your blog, I was AMAZED – no other word – by how gifted you are as an artist and by your terrific sense of humor. I feel truly honored that you nominated me!

 

2. ANSWER THE QUESTIONS GIVEN BY THE NOMINATOR:

1. Harry Potter or Lord of the Rings?
Books or movies?
No fair. Both! If forced over a pot of boiling oil to choose I’d go with the latter.
2. What’s your zombie apocalypse survival tool?
My glasses! So I can see?
3. If you could be one animal for 24 hours, which one would you be and why?
A cat. Oh, to be sooooo self-satisfied, and cozy!
4. If you had to choose between living 200 years in the past, or 200 years in the unknown future, which would you choose?
The future. Since science will surely soon find a way in time to way extend my kids’ generation’s lifespans, I want to make sure my son is not riding motorcycles and my daughter is running an only partly evil empire, and also check that she is supporting my son in the style to which he has become accustomed. I cannot choose the era you say? Bah.
5. I have 5 apples, I gave one to your friend, and then I gave 3 to you. Finally, I gave you 1 apple. How many chickens crossed the road?
4.
6. Name one food and one beverage to consume for the rest of your life.
OOOH.
Water – so dull but true.
BiBimBap – Korean rice dish with lots of vegetables on a hot stone pot. With chocolate considered a veg.
7. Number of Pixar movies that made you cry?
ALL.
8. Speaking of, name your most favorite Pixar movie.
Up. In my all-time top ten for sure!
9. Respond to the following statement: “Last week, Japanese scientists explaced – placed – explosive detonators at the bottom of Loch Ness to blow Nessie out of the water. Sir Court Godfrey of the Nessie Alliance summoned the help of Scotland’s local wizards to cast a protective spell over the lake and its local residents and all those who seek for the peaceful existence of our underwater ally.”
Shhhhh!
10. Meow?
Meep.

3. NOMINATE OTHER BLOGGERS:

As I just this morning commented on one of these very blogs, we don’t always share the exact same language, beliefs, or views on life, but the words of these people comfort and uplift readers, and help them to constructively confront challenges and injustice nonetheless. These are the bloggers who make me laugh and cry and think and hope every visit. They’re also extremely good looking. Please visit these wonderful blogs:

Eating Off Plastic (Is that allowed? It would be a genuine top choice!)

4. CREATE TEN NEW QUESTIONS FOR YOUR NOMINEES:


1. On a scale of 1-10, how seriously do you take yourself? (How do you feel about that?)

2. Let it go or get it done?

3. All-expenses paid vacation with free and actually effective childcare, where appropriate/necessary: what are the details – where, what, etc - for you and yours?

4. What is the thing you worry about most?

5. What is your favorite thing about yourself?

6. Off the top of your head, what are your four best-loved books?

7. Same for movies?

8. Three last meals, breakfast, lunch, dinner (this includes dessert, duh): go!

9. What do you miss from the past?

10. What are you looking forward to today?


And so go the four rules of THE LIEBSTER AWARD. Nominees are welcome to accept and pass on the award following these tenets, or to decline for whatever reason, knowing they retain my undying, slobbering admiration.


Again, huge thanks to Kelly at Eating Off Plastic for thinking of me!

Love,
Full Spectrum Mama

Thursday, July 9, 2015

TRASHY


Summer is here and the Full Spectrums are, one might say, less productive than they might be. It's been all kids (and lots of fun, truly) all the time since school got out and there hasn't been a whole lot of writing time, but I did manage to pick up a "People" magazine today. All in the interest of research, of course. 

Now I love a trashy magazine as much as the next person, maybe more, so I was stunned in my relaxing reverie to read this headline: "Heros Among Us: Crusading Against Autism." Against my better judgement - I Was trying to relax! - I read this piece on, guess who, Autism Speaks. Apparently, what Autism Speaks does is "restore the spirit and hope that autism tried to take away." 

With all due respect to a wide range of families and situations, I very much beg to personally differ with that assessment !

I managed to quell the kiddos long enough to write this letter because I wanted to, you know, Speak:


Re: "Crusading Against Autism"
To the Editor:
Are you aware that many autistic people are able to read? In fact, many are avid readers.
As a mother on the spectrum with an autistic son, I was deeply saddened to see this headline. I will NOT be keeping this issue in the house, in case my dear boy, who is perfect just as he is, happens to fall upon this article. I would never, ever want him to feel that he himself is seen by some as something to be fought against, or someone who takes hope away. 
Sincerely,
Dr. [FSM]

Love, 
Full Spectrum Mama

Wednesday, June 17, 2015

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?

Tuesday, June 9, 2015

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!

Monday, June 1, 2015

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