PROSOPAG-WHAT-Y-WHO????

Prosopagnosia! Prosopagnosia is one manifestation of Sensory Processing Differences wherein your brain doesn’t process faces in the standard way. It’s also known as face-blindness. And both G and I have it.

I didn’t realize how severe my prosopagnosia was until I moved to Vermont. Living in this state is harder for me, recognition-wise, for two reasons. First, the population is almost entirely white. Living in New York City and other more diverse, generally urban environs most of my life enabled me to identify people partly by skin color and hair texture. Second, there was a style factor in these cities which is, shall we say, not so much in play here: flamboyance of dress is not as common in Vermont as I’d like it to be – and not just because I can’t tell anyone apart. As my dear friend Fern once said when we were in graduate school at Columbia University – an environs that felt to us downtown denizens like a bastion of preppiness in the midst of a then-freaky New York City -- “I feel like a drag queen here.” Come to think of it, we need more drag queens in Vermont, too!

ANYway, in a state where most people are white and dress casually, sportily. I find myself frequently faced with a friendly person who knows me, and expects me to know him or her. Which I probably do. But not by face.

Oh and another thing: small towns. In small towns you don’t just see someone where they work or attend a specific activity with you, where you naturally might develop contextual identification. No…in a small town, you also run into them and are expected to recognize them IN OTHER PLACES.

                                             Figure I – Basic Distinctions – Weak to Strong Recognition

                                                    Figure II – Bonus Distinctions – Strong Recognition

None of these observations – from skin color to hair length or texture or color to age to gender identity…--- is a judgment for G or me (well, maybe style -but I celebrate style diversity!). We are generally much too engaged in attempting to navigate this neurotypical world to feel critical of others’ looks. Visual differences (there are others uncatalogued here that may be helpful: moles, glasses, braces…) are just ways to recognize people.

Once I get to know someone well, I am able to recognize them…most of the time. Certainly close-up! This is not the case for all people with prosopagnosia, some of whom are never able to recognize even their closest associates. G has thought other women were me from time to time, and continues to do so; only when he gets right in front of them is he able to see that he was mistaken. Disconcerting – but I get it. In fact, it was through watching G have some pretty notable encounters of this sort that I began to realize that I had the same tendency. Before this dawning, I’d been prone to wondering why I could not distinguish between most of the mothers at drop off (or their kids, or who went with whom…), but I’d just put it in my “quirky me” category, with a side of “pathetic.” Around the same time, there was a great article in the New Yorker by Oliver Sacks ***http://www.newyorker.com/magazine/2010/08/30/face-blind*** on this very subject (which also goes into topographical agnosia – another form of visual agnosia [lit.: not-knowing] - that I also share, but, luckily, G does not), and I realized there was a name for what G and I were experiencing!

G realizes that he has this Sensory Processing Difference, and that it’s something I, too, deal with. He’s learned to check himself in this area, and he’ll often say, now, “…Is that? …No.” He’s become more careful over time of calling out to his peers unless he’s sure it’s the person he thinks it is, which, frequently, it is not.

As G grows, he will be able to develop tools for recognition and hone his skills in this area. As awareness grows, he’ll know his face-blindness is a sort of Sensory Processing Difference that is shared by many. He’ll figure out his own best Distinctions, recognition-wise – and never need to call himself “pathetic.”   

Love,

Full Spectrum Mama

An InLinkz Link-up

THANK YOU AND GOODBYE, 2014

We just found out we missed the Lowbrow Art and Crafts Fair in nearby Western Massachusetts, where we could have found stuffies that grew out of [name withheld]’s “desire to create a stuffed toy that wasn’t striving for a contrived sense of happiness.” Apparently, such stuffies “let you sit with your feelings.”  2014 has been quite a year for the Full Spectrums, replete with a Full share of disastrophes, laffs, triumphs and “dharma gates"...those stuffies would have sure come in handy...

Welp, even without custom Full Spectrum stuffies, 2014 has been a lot about learning to feel our feelings as a family. For the spectrum-y Spectrums, we are learning to sort and identify what our feelings are, and how they actually feel – in our bodies and minds. For the growing spectrum-y Spectrum, G, we are working on finding the perfect balance between teaching pro-social habits (blowing nose) and **not** teaching him to assimilate as neurotypical. Balance for Z, who has needed stringent rules and oversight for attachment-disordered behaviors, has included progress toward being safe with making some of her own choices, while still feeling held in strong boundaries.

2014 has been an exciting year for this blog, too. Readership doubled (up to 30,000+!), comments have been lively, and  the Sensory Processing Disorder Blog Hop is a hoot and a comfort. I was awarded a funded residency at the Vermont Studio center in 2014, which I was unable to attend because of a lack of childcare; in 2015 I am hoping to be able to attend the Studio Center’s only shorter (one-week) program. I’m excited about beginning my Third Anniversary Post cycle in early January with THIRD ANNIVERSARY LISTS I: ADVOCACY, to be followed by II: ATTACHMENT DISORDERS, III: CHOOSING YOUR BATTLES, and, IV: THE COMPLAINT DEPARTMENT.

I will be accepting COMPLAINTS at my email address, jineffable@gmail.com, until late January.

Wishing you a jolly, healthy 2015,

Full Spectrum Mama

Oh, Thank God, YES!!!!

Not long ago, I ran into someone I vaguely recognized at an event the children and I were attending. As we purchased tickets, I remembered that we’d met maybe six or seven years ago and that she’d had a son who at that time was being evaluated for some differences. G hadn’t been diagnosed with autism then, but had been tentatively labeled as having a Sensory Processing Disorder (SPD). *

With G and Z sort of doodling around behind me, I initiated a brief conversation with this woman:

Me: ““Hi. You’re blah blah, right? Yes, I think we met over to the blah blah when our boys were little…”

She: “That’s right! How have you been?”

Me: “Great, thanks. You? Do you still live on xyz street?

She: “Yes.”

Me: “And didn’t you have a son with asperger’s or something like that?”

She: “Oh, thank god, no!”

CRINGE.

I look around immediately, furtively to assess damage. G’s back is to me, uncharacteristically still.

What do I do????

First, I say, helpfully, “Well, I do. Have a son with asperger’s. He’s really great!”

“Oh…Sorry!”

Awk-ward.

“Yeah, um, no problem. Really, it’s…great…See ya…”

Next on the agenda? Make a list, of course!

Why I thank whatever forces in the Universe brought me this child who is the best kid (boy division) I have ever known (abridged version)

He is super-kind

He always tells the truth

He is generous

His attempts at eye-rolling show just how little of a real eye-roller he is

He is goodhearted

He is selfless and has no guile whatsoever

He doesn’t care what people look like

He doesn’t care what people have – money, status, possessions

He loves his teachers and makes them feel extra-appreciated

He is a gentle warrior for justice

He would never intentionally hurt any creature, except in self-defense or defense of another

He loves animals for the whole, worthwhile beings they are - with all his big heart

He always does what he says he is going to do

He always has good intentions

As they say, “If you know one person with autism, you know one person with autism.” But I can safely say that ALL the people I now know with autism – though they are as different in size, shape and temperament as any other bunch -- share these traits.

Well, some of them may be better at eye-rolling than G. But not much.

A dear friend recently shared a blog post with me where a mother was expressing her anguish about her child’s SPD* diagnosis (http://www.scarymommy.com/somethings-not-right-with-our-boy/?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+ScaryMommy+%28Scary+Mommy%29) .

Sure, anguish is a piece of the autism/difference picture  – but for me (and most other people I know with autism and parents of children with autism) it’s anguish about how the neurotypical world will treat us/them, NOT about the “condition” itself!

I’m not saying this discrete anguish is wine and roses, baby -- it can get you down. But it is separate – at least for me – from feeling that something is WRONG with my boy (or me, or my friends, or their kids…). 

For many of us, getting through the diagnosis and labeling morass, and, dealing with well-meaning and/or thoughtless ignorance are the grueling bit.

Not the autism.

And so I say unto you, Praise the Universe, YES, I do have a child with autism.

Love,

Full Spectrum Mama

* Sensory Processing Disorder is generally related to the autism spectrum, although not considered on it per se. These two neurological conditions may co-present in some individuals.

Our Spectrum Through a Lens of Rules

Do you obey rules?

Why or why not?

What about the children you know – yours or others’?

Continuing on the trajectory that began in my next-to-last post about boundaries, we now turn to those more concrete, explicit boundaries known as “rules.”

Figure I: Chart of Obedience

This chart describes some of the main ways individuals react to rules.

People may obey rules out of a sense of justice or fear or respect. They may do so for the sake of appearances -- or because it has not occurred to them to do otherwise. People may disobey rules because they are not aware of them – or are aware and simply do not care. Or they may do so because they are rebellious and see rules as made to be broken. They may enjoy being sneaky, or feel that they need to be sneaky in order to do what they want to do.  In this chart, the motives of justice and injustice meet on the spectrum, as do two expressions of apathy.

Finding ways to help my Full Spectrum household follow those rules I deem important has been an ongoing challenge. In fact, when I consider getting my children to obey rules, the classic notion of “herding cats” comes to mind. G cares deeply about justice and will sometimes follow rules for this reason, but he tends toward the “Lack of Awareness/Who Cares?” quadrant of my chart.  Z typically obeys rules for the sake of appearances or out of fear or respect, while having a very strong propensity toward sneakiness and rebellion. I’ve yet to determine if, for Z, defiance is based on a feeling of injustice. 

In basic societal terms, it seems that G wants to be “good,” and is sometimes unable to figure out how, while Z seems to want to be “bad,” and is only sometimes successful due to constrictions which force her to act “good.” Obviously this is an oversimplification, and not language I would ever actively use in parenting, but it does reflect how I often feel as we try to navigate the world of rules as a family.

I was fortunate to encounter my parenting idol, Xiao Chuan Ayi (Auntie [given Chinese name]), when G was but a lad of two.  Xiao Chuan Ayi is unflappable, serene, as stable as I have always been high strung.  And she has two brilliant, active sons.

Her standard admonition is very simple: “You know what? That is not safe [or kind or polite or…],” said with great poise and tranquility and authority. Her boys could be breaking all sorts of rules -- swinging from a chandelier with machetes, making war cries and sprinkling those below with water balloons -- and, with a word and a Special Look from their mother, they are standing at attention. On the ground! She would surely argue that they don’t get off the chandelier immediately 100% of the time but, trust me, they listen more than most.

 Following the admirable Xiao Chuan Ayi, “You know what? “ became my earliest go-to phrase. “You know what? That is not safe/kind/polite/[fill-in-the-blank]…” was a relatively effective way to at least communicate rules and boundaries. if not to actually enact them in each instance.

The problem was and remains that I have neither what Xiao Chuan Ayi terms, “The Chinese Look of Death,” nor its Whitey McWhiterson equivalent.

“What if I got angry?” my demeanor and past conduct seem to say to my kids, “Oh yeah? Well…What if I-I-I…raised my voice to a fairly loud volume and then told you, um, you couldn’t have any dessert but, uh, you could certainly have some blueberries with a teensy bit of Hershey’s syrup on them? Huh? Huh??? What then!”

Very threatening.

“You know what?” Infractions in areas I really care about – kindness, respect, safety – may call my Full Spectrum of Doom down upon my chilluns. In those instances I am able to invoke a fearsome aspect of myself without, indeed, really even trying. I just – some stuff I just don’t care about, even though I am supposed to.  Sure, I would like my children to know how to properly set a table.  I have a hard time, however, mustering obedience-ensuring wrath over a fork in the wrong place.

But I should not imply that my friend rules through fear. To be clear, Xiao Chuan Ayi’s Chinese Look of Death may be most remarkable in how unnecessary it is -- because the woman just exudes calm. To wit, G, Z and I were recently at her house on a lovely summer morning and, through a series of stomach-related mishaps, managed to cover her entire bathroom floor (heck, her entire bathroom) in diarrhea. After cracking up big time (now that’s a good friend), she whisked G and Z away so I could deal with the disastrophe at hand.

While I scrubbed away upstairs, the children – those same children who had not stopped flapping their jibs for the first three weeks of July -- stayed downstairs with their Ayi, quietly entertaining themselves.  As I attempted at length to restore my dear friend’s bathroom to some semblance of cleanliness, not a peep was to be heard. Meanwhile, Xiao Chuan Ayi was…accomplishing things!

Or consider G’s kindergarten teacher, Mrs S.* Mrs. S is of small stature and looks like a stereotypical blonde angel. She is gentle, kind and quiet. Yet she was in complete control of a classroom that consisted of eleven rambunctious boys and two girls. Imagine the boy-filled, first-time-in-school chaos, and the tiny teacher in its midst. Yet: “Now girls and boys,” she would say softly, and the Entire Room would Instantly hush!

News flash: that type of gentle admonition leading to thrall does not often happen in our household, despite a much more favorable child-to-adult ratio.

Sometimes kids don’t listen. As parents, we must choose our battles. One task, then, is deciding which rules matter to us. The second is figuring out how to convey their importance in a way that makes sense, so that our rules are clear, just, fair and compelling.  Then we try to follow through with consistency and regularity.  If we can begin to do so with the inner authority and peaceful mien of a Xiao Chuan Ayi or a Mrs. S, so much the better.

I’ve heard tell my paternal grandmother (who taught first grade) had this gift, but such subtleties do not come naturally to me. From where I stand on the spectrum, rules that are just and good are meant to be followed and those that are not just and good are to be disregarded. Simple. Explaining why this is so feels alien.

Modes of enforcing rules seem either mysteriously subtle or ham-handed or violent.  Also, ineffective: yelling, exhortation, protracted explanations and dire consequences all have little impact given Z and G’s Spectrum locales. The way they handle rules could ultimately affect their overall well-being and chances of success in life, ergo, the need to cultivate new approaches.

The gentle authority of teachers like Xiao Chuan Ayi, Mrs. S, and my Grammy seems a tricky, elusive, extremely worthwhile art, and certainly one to which I aspire. 

Subtly!!!

Love,

Full Spectrum Mama

* Mrs. S will be Z’s first grade teacher in the fall, and her placid, earthy solidity promises to be a great match for X’s mountain-moving attempts.