“I even have trouble understanding the Mondegreens.”

I mostly listen to instrumental music because I can’t understand what people are singing. One of those major effects of CAPD (Central Auditory Processing Disorder).

*Mondegreen (noun)
“A misunderstood or misinterpreted word or phrase resulting from a mishearing of the lyrics of a song.”
~ Oxford Dictionary

Companionably Autistic

It’s a different thing being around other autistics.

Well, doubtless I’ve been around other autistics before. But when we did not know we were, there was all that stress from passing (“pretending to be normal”), so generally weren’t aware of what our sensory and other needs actually were, much less how to comfortably, genuinely, be ourselves.

Now it’s different.

(1) A little morning talk over my cuppa tea. Then he says, “Well, that’s enough social interaction for a while.”
He returns to his computer work, and I chuckle as I go out the door.

IT’S LOVELY when constant conversation or chit-chat aren’t expected.

(2) Yesterday I took a day trip to London to meet a friend from the States.
We met at the train station, where (being faceblind) I texted him my location and held a page with his name so he could find me.

After he bought his sausage roll, I suggested eating on the less-crowded, quieter mezzanine level. Together again after a long absence, we sat talking about how much less stressful it was not being in the States: him not worrying about being shot at, and myself not being awoken by gunfire. Alas, we were unsuccessful at not talking about Trump and disability and healthcare and racial and social care and environmental and- and- and- US politics Bllaarrgg. (The actual convo didn’t have many paragraphs, or rather, not spoken aloud. But I flapped a little in frustration.)

Time to move on; we brushed off the inevitable puff-pastry crumbs. I geeked over riding trains and how different cities smelled, and he reminisced about subway announcements. We started to get on the first subway car but it was too claustro’, so we caught the next. En route to the British Museum, Waterstones bookstore sucked us in; he found books he was looking for. I checked out the wee toys, feeling more 5 than 55, more child than grandmother, as I checked out the shinies and tiny things and science toys.

We ambled to the Museum, pausing as needed for him to catch his breath or for my slow knees to ascend stairs. No need to apologise; no need to hurry.

Then finally at the Museum! Get maps and —
Have a cuppa tea and figure out what to see. This was not a Must See Everything tour; we both understood having to mete out our tolerances. Made a list. He suggested started and the fifth floor and working our way down — Excellent!

Oh boy. One lift out of service, and it took a bit of searching to find the other. And … the fifth floor Japan exhibit closed. Moving along … Third floor was fascinating. We took photos. SO crowded, so many languages going on, so many Auditory Processing Disorder blips for us to chat much.

By the time we got to the room with the Egyptian mummmies, it was a crush of noisy school children in addition to all the tourists. One couldn’t walk in a straight line, and hardly much take photos.

It was overstimulating. Too much noise and too much crowds and he needed a breather. Too many smell-shapes and flavoured colours and moving sounds and I needed to sit. We glanced at each other in instant agreement; he pointed towards an adjoining room and we wended our ways out. Sat and rested by the rune stones.

At the end I lost my pal in the vast space of the museum entrance and crowded plaza, so once again, I texted him my location and held a page with his name so he could find me. It being mid-afternoon, we did the sensible thing and regained our stamina with chips and ale in the pub across from the museum. Apparently 15:30 is a good time in a pub; there weren’t many there and we could hear each other speak. Recharging time: I rocked and he doodled.

That in turn meant that we were hungry for our evening meal at Café in the Crypt at St Martin-in-the-Fields during early evening. The food was hot and fresh, and we choose a table that felt secure near a pillar, instead of exposed from people surrounding our backs.

Back on the street after dinner, he announced, “I’m running low on spoons.” We stopped to rest at Trafalgar Square. Then my train was due in an hour, so parted we ways at the Northern Line.

IT’S LOVELY not having to justify eating at a particular table, or wanting to photograph the visual texture of fractured safety glass, or why subway announcements are so endearing. Or that one is getting overwhelmed and needs to rest and stim, or is running out of spoons.

Nor did it take us twenty minutes to say Good-bye; that was enough social interaction for a while.

WE MUST CREATE CHANGE

I was going to call this my “Hope For 2015”, but that is so passive and useless. Anybody can – and lots of people do – post warm, fuzzy notes with Hopes for the New Year, and others click and share. Lovely.

But this is NOT all warm & fuzzy. It’s literally dead serious (with many murdered throughout the year), and quite often blunt, because I am blunt at times. It’s also a call to a change of perspective for some of you.

Deal. Think about it. I’m not a lone voice. Click and share.

MY CALL TO ACTION IS FOR YOU TO READ THIS THROUGH, THINK, AND SPEAK UP. ALL YEAR LONG.

And the next year and the next.

This isn’t about some stranger, or Those Other People, or “That Kind”.

Children with disabilities or other differences are not diseased or broken. The same is true for adults. Yes, those “poor, little disabled children” grow up into disabled adults. Gee, so where’s the concern now? It sure isn’t at work; in the U.S. general unemployment is at 5.3%, but for disabled adults it’s twice that at 10.8%.

Nor are autistic or ADHD children some kind of modern mystery; millions of such adults have been around for decades, just unrecognized for lack of diagnostics. Most of us are profoundly relieved to find out Why. We still have to deal with the details, but that’s easier when you know that not all your difficulties are from some kind of moral failing, or from a lack of trying (and trying, and trying).

WHAT, YOU NEVER HAD KIDS LIKE “THAT KIND” IN YOUR CLASSES? YOU KNOW WHY?

Some were kept at home, because until passage of the IDEA in 1975, US law did not require public schools to teach everyone.

Some were warehoused in institutions, badly treated, undiagnosed or misdiagnosed, and oft uneducated.

But many of us were there; how we struggled through school and life, without accommodations or understanding, and often the target of bullying by peers and even school officials.

Untold numbers of women and men just knew themselves inexplicably “a bit odd”, and did best they could; some succeeding, others not so well.

At worst are those who not only lacked resources, but were shunned by society’s classism, ableism, racism and sexism, and (if still alive) are found among the imprisoned, derelicts, addicts, abused and enslaved populations.

YOUR CHILDREN AND EVEN COLLEGE STUDENTS WILL LEARN DIFFERENTLY, SO YOU MUST ADJUST

We are neither inherently stupid nor incapable of learning. Learning differently means teaching differently. Find what works. Everyone has limits, but a consistent lack of success means you should use another method, as well as more time. Sometimes the learning is highly irregular in pace. Tie learning to interests to motivate your children and students.

Also, be aware that sometimes the “simple basics” may be entirely bypassed by some students who leap to master higher concepts, albeit often forever struggling with those seemingly “simple basics”. People are humans, not robots. Learning is not always linear.

COMMUNICATION IS NOT JUST SPEAKING

Never assume that just because someone is nonverbal they cannot communicate. If you’re not getting their messages, then *you* are doing something wrong. Nor should you assume that because someone is nonverbal that they cannot understand what people say (though the processing may sometimes be delayed). Nor assume that because someone has been nonverbal for years that they’ll never speak. And damn, will you get an earful.

INCONSISTENCY IN DAY-TO-DAY ABILITIES IS FRUSTRATING FOR ALL, AND NOT A CHOICE

Importantly, just because someone is able to speak or do a task one day, that does not guarantee consistent results. It’s the nature of disabilities — regardless whether considered mental or physical – all involve the brain. Brains are funny things, and many of us have a few buggy Beta-version programs in our wetware. It’s frustrating as hell for all involved.

But don’t assume the “could-then-can’t-now” is intentional. “Oh, he can hear me when he wants.” “Well, you could solve those equations just fine yesterday.” I can guarantee that after a lifetime of such, ridiculing people and punishing them for things they cannot help only increases performance stress.

While that stress might increase focus from sheer terror, it often squelches overall functioning. (Do you want me to listen to you, or try to recall yesterday’s process, or slowly figure it out on my own? I can only do one — if my stomach will stay down.)

TRAMPLE THE TROPES

Ignore the media tropes and centuries of religious hype: disabled people are neither inherently amoral, soulless and evil, nor are they infinitely happy, friendly and angelic. People are people. A few will be nasty bits, some will be profoundly good sorts, and the rest are just ordinary folks who get mad, sad and glad, who screw things up sometimes, and who will also serve others selflessly despite bearing more abuse than anyone should.

We are definitely not incomprehensible, incomplete, little autism-puzzle-pieces, unloving, unlovable, or uncaring.

We are whole people with all the same cares, needs and wants as all humans. Beware — disability happens to anyone at any time. We aren’t a Them, and YOU can be among the world’s 15% in just one day. We are all Us.

STOP “TEACHING TOLERANCE”

Because tolerance means putting up with something one doesn’t really like, or that doesn’t really belong. We want full-fledged ACCEPTANCE.

Nor should we only be acceptable if we can somehow “overcome” our differences enough to pass for Normal Real People. Trying to “pass” all the time is exhausting, and invariably breaks down, oft resulting in the [supposed] Normal Real People assuming that one is lazy, stupid, crazy, all the above, or worse.

Training children for hours a day how to artificially perform “acting normal” does not serve to help them learn how to function best in the world. Yes, of course teach good manners, social and work skills. But suppressing every twitch of one’s natural being adds to stress, making everything else yet more difficult. This is especially when performing like a “normal person” means not doing the harmless things that reduce stresses.

STOP THE BLAME

I must call out the terrifying, unaddressed assumption which underlies so much daily trauma: “The reason the disabled [children] are targeted by bullies is because they are perceived as being weird”. Despite the pervasiveness of this social theme in society, most people are functionally unaware of it, all the while instilling in their Normal People children the same message. Normal People children need to act normal, and not act like That Kind. After all, that’s how the Normal People know the others are That Kind, who’s Us and who’s Them.

But it’s the disabled and different who are taught, over-and-over-and-over that not only is it their fault for behaving or looking weird, BUT ALSO if they weren’t so weird, well then they wouldn’t be bullied. “Quit being so weird! Just say No! Just say Stop.”

Just say BULLSHIT. Because this is blaming the victim. The problem is not that everyone isn’t the same, the problem is that there are bullies.

Even worse, blaming the targets actually empowers the bullies, because the social story says it’s the victim is the one who is acting wrong, so it’s not really the bully who is to blame.

Let’s just top off all that existing anxiety and depression with the trauma of trying to seek justice, but being told again that, “Well it’s your fault, you know. Attracting attention by being weird, and bugging people. You need to quit making trouble now. You already take up too much of our time with all of your “special” needs. Quit whining and go deal with it. — But no fighting, because we’ll know it was you who started it.”

By the way, it’s not “just a kids at school” thing that everyone will “grown out of”. It continues on through college, and happens at work, too.

YOU CAN’T WALK IN THE LITTLE BOY’S SHOES;

THEY’RE FLOATING DOWN-RIVER

It is NEVER acceptable to murder disabled children. Nor should these repeated, horrifying events be considered “understandable” or “excusable”, with the murderers being pardoned just because their son or daughter had a disability.

Increasingly more prevalent in social media, the crime becomes insidiously deemed more and more acceptable. Murderers re-cast themselves as martyrs, acquiring champions to their cause. Throughout repeated blog posts and news stories, they bemoan how taking care of disabled children is just too unbearable, they had to take care of them every day of the week, there was never any relief or help. (Even though there was.) Cue the groupies’ hand-wringing and protests upon the villains’ behalf: “Oh but won’t you walk in their shoes, how they’ve given up their lives, this wasn’t at all what they wanted.”

For in true sociopathic fashion, the poor, long-suffering parents revel in the attention, announcing to the world – sometimes ahead of time — what they have done, and all the while describing themselves as the victims. The dead children (young or adult) are unwanted, and deemed unwantable, less than human just because they couldn’t speak, or needed medical treatments, or used a power chair, or didn’t play with their toys the “right way”, or wore adult diapers … No one would want to live like that; the thing’s better off dead. And what of the groupies? Well, where do you think people get such terrible ideas that it’s okay to kill one’s own children?

ENOUGH WITH THE “DISABILITY INSPIRATION PORN”.

Quit using those heart-tugging videos, walk-a-thons, telethons, and other grand-society functions to win your supposed Cosmic Brownie Points for giving us your pity. Please stop dumping upon us the largesse of your unwanted rags (so Victorian, so passé), or creating useless functions requiring us to serve as targets of unwanted helpful-helper-helpiness for your ego-boo.

Get disabled people out of “sheltered workshops”. Yes, people need work they are suited to. But the segregation and token sweatshop “wages” are an embarrassment and humiliation to all.

YES, CHILDREN GROW UP.

YEP, STILL DISABLED, BUT NOW ADULTS

Do not assume your children will remain permanently childish and incapable — they mature on their own timelines. Allow adults to be adults. Support their needs and interests, but neither dress them like children, nor expect them to live their lives in naïve pre-puberty stasis, without adult desires for socializing with adult peers, life-long learning, mastering skills for some kind of job (even if that job is “just socially productive work” rather than traditional work), and yes, having a love life, however that may be expressed.

YES, PEOPLE ALSO NEED ACCOMMODATIONS;

THAT DOESN’T MEAN “CURE”

Most disabled or different people are not looking for cures to magically change them into someone else, some kind of fantasy Normal Real person that their families wanted instead. Our differences may result from physical events, by random mutation, and / or genetics. Your genetics. We are family. I’m Me, and I like being Me. If you somehow changed all the differences in my brain, I wouldn’t be Me anymore, with all my quirks and abilities.

Of course it will be great to find a means for preventing migraines, epilepsy, fatal medical conditions, et cetera. But it’s also a sad fact that some people have been so convinced of their undesirability as disabled human beings that they can only see “cure” as a means to being an acceptable Normal Real Person. (Worst of all, some people commit suicide because they’ve been taught to hate themselves, as useless and unwanted.)

But what’s really alarming is all the fund-raising, talk, research, and work going on today to eliminate entire kinds of peoples. I’m talking about the thousands of selfish individuals and sociopaths who believe that anyone with neurological or morphological differences should not exist at all, because That Kind takes up too much time, money, and resources.

That’s not “looking for a cure” – that’s eugenics and euthanasia, the same ideas that led to the Nazi Aktion T4 program and other horrors. (In my youth, the state hospital was still in the regular habit of sterilizing people. Had I been institutionalized, I might well not have had my lovely children and grandchildren.)

Yes, we want assistance, we want things that help us achieve what we want in life. Getting the things one needs to learn effectively, to move about, attend to their own needs, to work, to play, to be a part of the community, to have lovers or families. These things should not be seen as extraordinary, special, absurd, or a waste of money, just because they aren’t the same kinds of things used by other people. 15% of the people in the world have disabilities. That is a lot of humanity, and many are uneducated, abused, neglected, avoided, or shut away, depriving the world of incredible amounts of untapped abilities and talents.

CALL OUT BULLSHIT. REQUIRE ACCOMMODATIONS. DEMAND ACCEPTANCE.

MAKE IT SO.

Having Fun Pushing Limits

I was on the radio! :: hyperactive bouncing ::  You should listen to the show — there are links below.

Adrienne Lauby and Shelley Berman, co-hosts of Berkeley, California’s KPFA “Pushing Limits” disability program, invited Mike Ervin, advocate and blogger of Smart Ass Cripple and me to talk about “The Wild World of Disability on the Internet.” Is that fun or what?

Broadcasting is always giddy: I get to talk with interesting people I wouldn’t have otherwise, and the experience is recorded to share with all of you!

Between my ADHD and Auditory Processing glitches, I was worried about accidentally interrupting folks, but I don’t think we had too much trouble with that. It’s always curious to go back and listen to it myself, because one’s voice never sounds as low pitched as it does inside your head. But when I’m speaking, I’m on “live” rather than “Memorex”, and it’s cool to be able to rewind life and hear what happened.

Mike Ervin and I were unfamiliar with each other, but when you get four people together who are passionate about the same things (including hosts who can lead out introductory stories) there is no awkward stage — we hit it off quickly, and Mike has a wicked wit.

Of course, we could have easily spent an hour riotously remarking about activism, attribution errors and other topics. We did talk about those, and amazingly, with less than eight minutes apiece, we also talked about accessibility, myths, inspiration-p*rn, othering, home-care, how blogging “levels the playing field” and more. It was great fun!

(Oh, and related to a question on fidgeting, I mentioned an XKCD cartoon, which I’ve included — with descriptions — at the bottom of this post.)

You haven’t missed it — there are 3 ways you can listen now!

1. Click this link: Pushing Limits: The Wild World of Disability on the Internet 

2. Paste this URL into the address box for your mp3 player (iTunes, etc): http://www.kpfa.org/archive/id/82157

3. Click on this download hyperlink:

Pushing Limits – July 6, 2012 at 2:30pm

Click to listen (or download)

“RESONANCE” An XKCD.com cartoon by Randall Munroe, in 3 panels.

In the first panel, someone is sitting at a computer desk, and is disturbed by vibrations.

In the second panel, he turns and asks the person behind, “Excuse me, you’re jiggling your leg up and down. It’s traveling through the floor and making my desk resonate.”
The other person apologizes, “Oh, I didn’t even realize! I’ll stop.”

In the last panel, the first person reaches over to hand the second a piece of paper, and asks, “Actually, can you just shift the frequency up by 15%? I think you can get resonance with Steve’s desk instead.”
“Uh huh…” says the second, and the first guy continues, “Here are the calculations. Let’s coordinate and try to spill his drink.”

The mouse-over caption reads, “It’s really hard to control the frequency, actually.”

 

Neither daft nor a bit deaf, just —

Well, more than once-in-a-while I misunderstand what I hear. Especially if I’m preoccupied, or the environment is noisy, and rather much if the other person is mumbly.

Quite likely the funniest Auditory Processing glitch I’ve had yet:

A grocery customer comes by and asks, “Do you have any haggis?”
(Mind you, I’m in the States; most groceries don’t even carry haggis, traditional or vegetarian.)

Turned out he was enquiring about
.
.
.
.
.
.
.
hacky sacks!

And no, we don’t generally carry those either, tho’ at the beginning of summer we get various toys in our seasonal aisle (sidewalk chalk, soap bubbles, jacks, pool floats and such).

Sometimes people ask for the oddest things at the grocery … this week someone wanted a printer cable — a serial port* printer cable! At least we got ourselves sorted before getting as far as the breakfast cereal aisle.

__________

* For you non-technical folks, that’s an older piece of equipment, not something you might find at a big supermarket, like cheap headphones, CDRs, or power strips.

Someone left the Internetz

in my car!

“It’s a system of tubes.”

a system of tubes

a large boxful of cardboard tubes in the back seat

(My son salvaged them from his job because he thought his nephew & niece would enjoy playing with them.)

~#~

And while at work:

Brain’s a little off today; mis-read a woman’s tee shirt as, “Bitchy is my nipple name”. [middle name]

APD (Auditory Processing Disorder) moment: mis-heard a customer’s location query for raisins as “razors” (which, unfortunately, are at opposite ends of the store).

Another APD moment, listening to the radio on the way home: “And now, the Snooze.” [this news]

Stupid Irony!

Someone defined poetry as “life condensed”.  Sometimes I think that disability is life magnified.  Today’s lens is Irony:

  • I dropped my reaching tool behind the bed where I … struggled to reach it.
  • Forgot to take my ADHD meds.
  • Was too stiff to pull on my elastics:  the wrap for my elbow, the two pads for my knees, and the fingertip-less gloves.
  • Nearly in too much pain to remove the child-safe cap from the arthritis medicine.
  • Couldn’t see to find the wee screw that holds in the lens to my eyeglasses.
  • (Similarly,  when my ex-husband couldn’t hear his hearing aid squealing.)
  • Couldn’t understand the voice-mail reminding me of a follow-up visit with the audiologist.
  • Being unsure if that noise I heard in the audiologist’s testing booth was one of the test tones, or my tinnitus.
  • Asked a random store clerk to open the box and unpeel a bandage wrapper so I could stop the bleeding of yet another torn cuticle and pay for said bandages.
  • Sat on the grocery floor because I’d forgotten to wear my knee pads that day, and had to stock boxes of aspirin and arthritis meds.
  • When discussing my difficulties with social interactions with a counselor and mentioned that I thought I was missing things, I was unable to tell just what it was that I was not catching!

And so on, and so on.  Feel free to add some of your own!

I need to write a letter to my boss*

[* THIS POST IS A PART OF BLOGGING AGAINST DISABLISM DAY 2010]

Or perhaps, just deliver an explanatory document to my boss and the HR (Human Resources) person at my second job.

My annual review was okay; very good on some things, okay on others, some recommendations (there always are — no one is perfect after all).  But something mentioned was to get to know the regular customers by name.  I have, after all, been here a year, and grocery stores have a core set of regular customers that come through once, if not several times, a week.  It’s not hard to learn names when you’re checking them out, as the names appear on their check or on the register (till) screen when they use a debit or credit card.

But of course, most people have no difficulty distinguishing or remembering faces.

I on the other hand, have that lovely invisible disability of prosopagnosia, or face-blindness.  I don’t recognize people by their faces.  I cannot easily or quickly identify people.  And, I cannot remember faces.  Sure, I’ve learned to (consciously, relatively slowly) identify a core set of the people with whom I work regularly.  I know my immediate bosses, the store manager, some of the other managers, and several of the checkers and sackers, a few stockers, and one each of several butchers, florists, pharmacists, and cooks.

But they are likely less than 25% of the total employees.  I’m not sure how many there really are, because part-timers tend to come and go, and also, to me the other employees form a general mass of generic persons, all of whom follow the same prescribed dress code.

Ah yes, the dress code.  The great thing about jobs I have is that the school and the grocery both require people to wear name tags.  Not only can I be sure with whom I’m speaking, but they also allow me to check and memorize the names once I have figured out how to identify that person regularly.  Whee!

But, unlike the school, the grocery has a dress code.  It’s not overly fastidious, just along the lines of slacks + collared shirt, except when we are to wear a specific color of shirt on Fridays & weekends.  Of course, there’s a down side — when I need to find say, my assistant manager to ask him a question, there’s an entire giant supermarket just riddled with people in blue button-down or polo [golf, tennis] shirts — and some of those are customers!

I cannot just glance over a crowd of people and instantly spot the person I need.  They don’t “pop out”.  (No, not even my family members!)  Instead, I must examine each person and compare their overall size, haircut, gender, and coloration to my mental gestalt.  Of course, it’s easier if I’m looking for say, a taller, brown person — that means I only have to scan each aisle for (1) blue shirts, (2) tall people, (3) brown-skinned people, and (4) the particular haircut, gait and voice that is one of the assistant managers.

That sounds fairly easy, or at least efficient, right?  But that’s still walking down some 15+ aisles and side-aisles, visually sorting each adult-size person.  And quite possibly the guy’s in the back scanning office or stock room or upstairs office or break room or in a restroom or retrieving something from the outside loading dock or where-ever-the-hell managers go when they go poof and disappear.

Thank heavens I can get on the intercom and page him to call extension 137 or whatever.  In turn, when I’m needed to be an extra checker or to meet with someone, the various managers have been very nice about paging me by my name-and-department or by my whole name.  I’ve not really bothered to explain the whole Auditory Processing Disorder thing; I’ve just said that it’s hard for me to understand the pages sometimes, especially if my head’s down in a refrigerated case  with its noisy fans, or I’m in the back room pulling stuff out of shipping cartons.

But you know, it’s difficult to explain faceblindness in 25-words-or-less.  No one’s heard of it, and the fact that I can in some manner still identify some people enough of the time makes it even more baffling to people.  And of course, there’s the old, “Oh, I have trouble remembering names and faces sometimes, too.”

Well, yeah.  But you still recognize people, in a split-second of unconscious thought.  You are aware that you know these people.  You may even know where you know all those people from. You just have trouble remembering the names that go with those faces.

I never do.  And except for the couple-dozen very morphologically distinctive customers, I’m not likely to remember any of them.

Silly people, they keep changing their physical characteristics, wearing different clothes through the seasons, changing their hairstyles, their purses, their hats or glasses, and so on.  Sometimes they have family members with them, and sometimes not.  Their children have this incredible ability to grow and morph dramatically.  And of course, the customers keep changing the details of how they interact with me, and will need my help finding something in one aisle or another, or check out at different times of day, or whatever.  Good heavens, sometimes people whom I know from other parts of my life will come through — the pharmacist will be shopping in their street clothes instead of standing behind their counter in a lab coat, my neighbor, or a former student will greet me, and they usually expect me to know them when they are out of their usual environments.  (At least my ophthalmologist understands that I’ve hardly ever seen him with my glasses on.)

Alas, the world is too full of generic people seen on an intermittent basis.  Once in a great while, somebody comes by to ask me a question, and it isn’t until they begin to speak to me that everything clicks, and I realize this is my daughter or son-in-law!

I’m really quite helpful to customers, am conscientious about getting the stock rotated and shelved with the right price tag, do a great job of setting up displays, make a point to be sure that the back stock is checked so it gets on the floor, am careful when bagging so the cold items are together and the eggs are all okay and the bread and produce doesn’t get squished, and so on.

It’s just that I will never be able to learn very many customers, or even all the employees.  And much as I would like to have this magical skill that 98% of the rest of the population has, my disability is far outweighed by all the other things that I can do well.  I’m not lazy or stupid.  It’s just that I have an invisible disability.

“Attention grocery shoppers!”

“We have a special going on in our natural foods aisle, right now!  You can get your specialty questions answered by our very own over-educated scientist-grocery stocker!  That’s right, weekends and evenings only, over in our natural foods aisle!  And THANK YOU for shopping your local supermarket chain grocery!”

Oh, boy.

It’s one thing to be helping someone find the curious location where the grocery manager decided to stock the barley.  No, not with the rice and beans — that’d be too easy; it’s with the bouillon.

And it’s another thing — but I get ahead of myself.  (Alas, when I do that I’m likely to trip over my own feet and sprain an ankle, but that’s hypermobility for you).

One evening, every other row of fluorescent lights was off, as was the canned music.  Apparently they were filming a commercial or some advertising stills. Whatever, we had a couple hours of bliss.  Why can’t the store be so calm and pleasant all the time?  Because the people who study customer behavior say that noise and lights are important.  Or maybe the grocery industry just thinks that noise and lights are important.  Or maybe old research suggested such.  Or maybe stores are following some historical misinterpretation of behavioral research. Hell if I know.  As for me, the canned music just adds unnecessary background noise, aggravating my Auditory Processing Disorder.  Did someone just page Manager to the Customer Service Desk or Andrea to the Customer Service Desk?  Did my boss just page me to dial 14 or aisle 14?  “Oops, sorry, mis-heard you with all the background noise,” I apologise to an older gentleman, as I lead him away from the [recycled paper] brown plates to the bran flakes.

Sometimes a customer will ask for something not on the shelf, so I helpfully zip down to the back room to see if there’s any in backstock. Usually, there isn’t, because by definition, backstock is the overflow that won’t fit on the shelves.  Alas, if I’m in a distracted mood, I will forget to make a mental note of what the customer is wearing, and upon my return, will have that panicked second when I realise that they have moved onto another aisle, and I am supposed to find them.  Oh, the perils of being faceblind: I can’t remember people!  Were they alone, or with another adult, or children?  Did they have a large or small cart?  Do I have any idea of whether they were male, female, or some overbundled or indeterminately-coiffed gender?  Were they were pink- or brown-skinned?  Hat? Fancy purse?  Team jacket?  Why can’t everyone be as distinctive as the fellow who dressed like Eddie Izzard’s less-chic sibling?

My other problem of course, is that I actually answer the questions about the things we sell.  Some day, someone is going to get annoyed.

Once in a while I stock groceries over in the natural foods section.  It’s pretty much like stocking groceries over in the unnatural foods section, except that omitting artificial coloring makes food more expensive.  That and the aisles are narrower, so I have to park the flatbed down at the ends of the aisles and lug more cases.  One day I forgot my knee pads, and realised with a heavy note of irony that stocking all the arthritis treatments was making my knees ache.

“Um, where do you sell the sugar?”

“The sugar?” I repeat, buying a moment’s time while I re-engage my customer-conversation scripts, and activate my mental map of the store.

“Yes, I want the sugar without any chemicals.”

Omigod.  Aside from bottled water, the bags of sugar are probably one of the purest chemical resources in the entire store.

“But sugar is just sucrose; it doesn’t have any added chemicals,”  I manage to shut my mouth before going onto explain that sucrose is a disaccharide of glucose and fructose.  Nobody cares … “Here are our organically-grown sugars on this shelf.  And we also have sucanat and turbinado, if you’d like.”  (These latter two are less-processed forms of cane sugar; they have varying amounts of tasty molasses impurities that also make them brown.)

Honestly, a “chemical” is simply a substance with a defined composition.    You already know what H2O is.  Sucrose is C12H22O11 – there are 12 Carbon molecules, 22 Hydrogen molecules and 11 Oxygen molecules.  Of course, just knowing how many atoms of each element isn’t enough – other sugars such as lactose and maltose also have the same formula.  The differences are in how those atoms are arranged.

And if you’re shopping for plant fertilizer, a nitrate is a nitrate is a nitrate, and they’re all NO3-. The plant doesn’t care where the molecules came from, nor can it tell the difference if the nitrate came from an organic (naturally-derived) source or an artificially-manufactured source.  That said, organic fertilizers are more expensive and less concentrated, but are less likely to result in a build-up of salts atop the potting soil.

But please, don’t ask me for anything “chemical-free”; the only thing that is “chemical free” is an absolute vacuum.

I retrieve random things left on the shelves, where someone has left a box of Big Name mac & cheese amongst the organic mac & cheese, a shopping list, a wee sample cup given out by the guy flogging new flavors of hummus, and a box of Airborne.

“What does that do?” asks the other grocery stocker, gesturing at the colorful box that proclaimed, “Created by a school teacher!”

“Nothing.  There’s no research evidence to support it at all.  A grade-school teacher is not the same thing as a compounding pharmacologist.”  Were I in charge of ordering, we wouldn’t waste shelf space for nonsense like that, or for things like Bragg vinegar that is supposed to “help remove body sludge toxins”.  Body sludge toxins, what nonsense!  (I suppose it’d help the lime buildup in my sink drain.)

“Excuse me, where are your all-natural gummy candies?”

Because you know, gummy candies are so natural. Wow, I’d love to have a shrub that produced gummies, especially the cherry and liquorice sorts.  Does the soil have to be aerated by gummy worms?  I hope it’s not thorny …  “They’re over here, on the top shelf.  Is there anything else for which you’re looking?”

“Attention grocery shoppers!  Are you looking for holiday candy and merchandise?  You can find it all over in aisle 14, where we have a wide selection of holiday candies in Fun Sizes, all your same favorites as the last holiday, but wrapped in this holiday’s color themes!  Don’t forget to get some holiday-themed merchandise for your loved ones, and holiday-themed party goods as well. And THANK YOU for shopping your local supermarket chain grocery!”

Saved by bureaucracy

( A follow-up on my shaky employment status, as described in a previous post, The Catch.)

So now I’ve twice seen the ENT (Ear, Nose & Throat doc, not tree-folk), to figure out if the vertigo, worsening tinnitus and hearing difficulties are related to Ménière’s, or “just” migraines.  At those visits I also spent time in the audiologist’s booth:  “Huh?  Sorry, I can’t see what you’re saying.”  “Oh,” he replied jovially, “this isn’t a vision test, it’s a hearing test.”  Ha, ha.  Very funny.

(Have I mentioned that lately one of the cable channels is messed up, and maddenly, we’ve not had any closed-captions on episodes of CSI ?  Listening to TV is hard enough with fussy babies who want bouncing, much less auditory processing glitches and tinnitus.)

And then something wonderful happened:

The day after my first ENT visit, it occurred to me that it might be useful to ge an official letter from the doc to give to my various bosses.  So I called in my request to the office nurse and picked it up from the receptionist and passed out copies to my supervisors and those got fowarded to Human Resources people and —

SHAZAM!

I was saved by bureaucracy.

(I mean hey, it’s gotta happen sometime, right?)

Because apparently being treated for Ménière’s disease (note the careful legal waffling on diagnostics) falls under the umbrella of an American labor law known as the The Family and Medical Leave Act of 1993 (FMLA).  Basically, taking care of sick family members, birth, adoption, or one’s own illness (covered by the Act) is protected so the worker can get unpaid sick leave without worrying about job security.

I cannot be dunned for absences related to bouts of vertigo.

My principal was of course very polite and helpful in the process of explanating this unexpected coverage.  I was asked about accommodations that might be helpful.  Alas, none of the things suggested by the Job Accommodation Network are applicable to my job (but that’s a great site if you need ideas for accommodations for most any sort of affliction or difference).

However, I was giving some 60 days of sick leave for absences related to — and only to — Ménière’s.  Despite my initial relief, my job status still feels as wobbly as my gait some days.  Stay tuned for further developments.

The long and short of it

It’s going to be a long day; I can tell already.

Last night I finally got eight hours of sleep, aside from several prolonged coughing fits.  The previous three nights I’d only gotten four hours of sleep.  You’d think the extra rest would make me feel better, but I’m still running short on good sleep because I have this bronchitis or whatever (we’re waiting on the lab results from the nasal swab to see if I have Pertussis, holy shit).

At least I only have to work one job today.  But I’m teaching an evening class and I suspect that by then some of my cognitive functions will be running on Reserve Power.  At least it’s a subject I’ve done several times before, so I can get by with using a lot of verbal scripts.

It’s going to be a long day; I can tell already.  That’s because I’m already running into “System Overload: Error Messages”.

P.S.  I’m going to have a bowl of Mint-Chip ice cream and see if that doesn’t do anything for me, since the efficacy of Häagen Dazs Vanilla Swiss Almond ice cream isn’t up to par. Thanks, Bev!

[now clink on this link for System Overload: Error Messages where post continues]

Cartfuls of Spoons

They’re out.  Or, Out.  We have the exquisite “Privilege of Being Clouted By Cabbage” and are navigating the hazards of the supermarket.  When things are done the way they’re supposed to be, going to pick up a few groceries is just as boring, or as Dave discovered, lonely, for disabled people as much as it is for everyone else.  But sometimes it isn’t, such as when Wheelchair Dancer finds herself navigating the hazards of anonymous donors that leave awkward brochures under her windshield wiper, and then dealing with the even more awkward social fallout with the clerk who’s assisting her.

People with a variety of disabilities come to the store to get groceries, movies, dry cleaning, take-out food, postage stamps, floral arrangements, and because it’s this time of year, garden plants, which is why I am working there.  I shouldn’t be surprised, but I am bemused to report that I realised that people with physical ailments are shopping at the store alla time!  After all, that is why we have some of those electric carts, in addition to automatic doors, ramped paving, lower check-writing stands, supposedly-accessible bathrooms*, et cetera.

Most of the time I just interact with the public as a “normal” garden center employee, but sometimes we are also interacting with that subtle overlay of disability, which entertains the social scientist part of my brain.

Being the token horticulturalist, I answer questions, help customers plan flower beds and suggest suitable plants for locations.  In addition to working the register, watering, deadheading and “facing” the stock (moving pots towards the fronts of the benches to fill in holes left by customers), I work with the others to come up with æsthetically-pleasing displays of the plants.  (Although there is no way of hiding the fact that the corporate HQ plagued us with a plethora of Pelargonium, a visual red tide of geraniums.)

I’ve seen plenty of plant displays at a variety of other stores, and have found their long lines of benches to be annoying.  It’s not just that endless tracts of pink & purple Petunias, orange & yellow Marigolds, and red Geraniums are mind-numbingly dull to the point of dampening any sort of inspiration for coming up with container or bedding combinations.  It’s that the long lines of “benches” block traffic flow.  You feel like you’re trudging up and down the maze of a ticket queue, unable to grab some pots of more-interesting Corkscrew Rush or Calibrachoa tha are hidden over there two aisles over.  It’s hard to break out of the march to exit stage left to the register (till), or even quit to go over to the entrance into the store.  The long lines of benches are especially boring for children, who have little more than a view of the edges of the benches and the pots, with little respite in sight.  (I’ve taken to offering children cups of the cold water from our water cooler barrel, as hot, thirsty children are cranky children.)

Worst, when at these other stores run out of available bench space, a lot of the pallets of potted plants just end up dropped by the pallet jack where-ever there’s room on the ground.  This means that the aisles are not really planned, so sometimes there are narrow dead-ends, or aisles blocked by broken bags of mulch, or the plants are simply hard to reach because they are way down on the ground or are way deep in the center of the pallet.  They are not accessible.

For a few days, we too of a dozen pallets lined up at the edge of our lot, albeit with sufficient aisle space.  It really “made my brain hurt”, because the plants had been shipped all higgedy-piggedy, with shrubs, grasses, annuals and perennials all mixed together.  There were Daylilies in four different places around our lot!  The flats of shade-loving Wax Begonias and Impatiens and sun-loving Verbena and Vinca were all jumbled by species and color!  (And OMG, still more Geraniums.  And Creeping Phlox, which only looks nice when it’s blooming, and now we have enough to landscape a highway interchange.)

But thankfully, I’m not the only one who has a strong interest in making the endless flats of plants look more interesting, and be more accessible. We’ve been stacking pallets or propping them up on cinderblocks to put the plants into easier view and reach.  (Plus, they’re also easier for us to clean and water — ergonomics, w00t!)  We’ve been making sure that the aisles are frequently broken up into side-paths, and we try to keep the aisles 3-4 feet wide so carts, strollers and wheelchairs can get through.  It seems to be working well; every day we get compliments about how good the plants look.

But what makes this place pleasant to work for is the concern for helping our customers.  Sure, it’s store policy to be helpful (doesn’t every business flog that slogan?), but we are glad to break from running the register or watering to carry things out to the car, or load up bags of mulch and rock, or show you where the Verbena is, or explain the differences between the four varieties of white Petunias.  When someone has their hands full, we grab some empty flats, and pull carts (buggies, trolleys) over to make things easier.

It’s this “serve everyone” approach that makes helping people with various disabilities so much easier.  One of the other clerks knows American Sign Language, so Deaf customers are sure to look for her (my ASL is rather limited).  When the gentleman in the power chair thanked a coworker for carrying stuff out to his van, I was tickled to overhear him say, “No problem!  We do that for everyone.”  Because we do.

Sometimes the “disabled community” moments are colored in large brush strokes.  An older man in a wheelchair came by in search of some herb seeds, accompanied by two women who were of the “care-taker” rather than “personal assistant” mentality.  Although neither said anything obviously untoward, there was still a patronizing aura, that his desire to go shopping was being honored but that they were still “humoring” him.  It made me uncomfortable, and I kept trying to scan the interactions in the triad to figure out what was going on.

But the women were intent on asking me questions of their own, even as they were simultaneously going through the motions of helping him.  “Here’s someone who can help you.  He’s looking for some seeds.  Tell her what you’re looking for.  Do you have any seeds?  Do you remember what it was he wanted?  Ooh, don’t you just love those pink flowers?  Isn’t that what you got on your desk?”

“Well I dunno, but it’s not flowering any more.  Was you looking for parsley?  He was wanting to grow some stuff from seed.  You sure gots a lot of plants out here.”

Trying to track all this verbiage flying by was making me dizzy, and I just wanted to focus on finding out what the man came to get.  The customer himself was having some expressive difficulties. (Who wouldn’t have, being around those two all day!)  I knelt down on a knee so I could speak with him face to face.  I had to.  I had to disengage myself from the chatty care-takers who were now trying to ask me random questions unrelated to the needs of my primary customer.  I had to be able to focus on what he was asking for, which meant watching him speak.  And I had to honor him personally as the customer, not as some second-class accessory.

My knees cracked noisily, and I knelt down on one knee, and we conversed, just the garden center clerk and the customer who wanted parsley seeds, and who considered and then decided against the Doubled-Curled or Flat Italian Parsley seedlings.

After that moment, I stood back up and we were sucked back into the vortex of the chatty care-givers, who asked me some confused questions about houseplants, and then led/followed him over to the main store entrance.  I hoped he would be getting the things that he wanted this evening.

Sometimes the community moments come by quietly.  I was checking out a couple flats of annuals and several perennials for a woman, cleaning off some old leaves and blossoms and chatting as the register processed her credit card in its own slow time.

“This is going to take me several days to get it all planted,” she offered.

“Well, that’s always a good thing to do anyway,” I offered, affirming her wisdom.  “It’s those marathon gardening sessions that break our backs.”  The register finally finished hiccoughing through the electronic transmission and spat out her receipt.  I picked up her potted rose bush, rested it on a hip, and then deftly tipped up the flat of annuals to balance them on my other hand.  (It only sounds tricky; in reality the flats are just boxy grates, and I can curl my fingers into them.)  “Here, I’ll carry these out for you,” I said, leaving her to handle her purse and a couple quart pots of perennials, then added,  “I can’t garden for ten hours solid since I got arthritis.”

“Thanks.  I have RA and can only do so much at a time.”

“Ah, yeah,” I commiserated.  “You have to make dinners ahead, because the next day you’re too exhausted from gardening.”  She nodded, already tired from just the idea of the ordeal ahead.  “It’s fun, but you just run out of ‘spoons’!”   And then I loaded things into her car and we swapped the mutual thanks.  My attention turned to the gardening work of my own, left uncompleted or never even started.  Oh, and errands.  Here I was at the market nearly every day, but I kept forgetting to get my arthritis medicationn refilled!

“Hey Andrea,”  piped up one of my coworkers, “it’s nearly time for you to go on break.”  This clerk is a good guy; he’ll remind me when something is coming up, he’ll remind me when it’s time to start, and even after I’ve forgotten it.  He asks me if I remembered to clock in, and reminds me (several times) to copy down the next week’s schedule before leaving.  It sure is wonderful to have garden center clerks who are so helpful, especially when you when you’re having seriously distracted & forgetful AD/HD days!

* I’ve never navigated the women’s restroom in a wheelchair, but there are still the stupid doors to wrangle …

Gone Bananas

A few weeks ago …

“4011 !” I exclaimed to my daughter.

She looked up from her Mac where she was composing her latest essay. “What?” she asked in confusion.

“They started me on cashiering today at the grocery.  4011 !”

And then we both broke out laughing.

“4011” of course being the PLU (Price Look Up) code for bananas.

shipping cartons full of bananas

shipping cartons full of bananas

When she started as a grocery cashier the other year, my daughter had commented in amazement at how many people came through with bananas.  So many in fact, that she too had learned that number the first night, just from sheer force of repetition.

I would have thought that apples would be the most-commonly purchased fruit.  But no, endless bunches of bananas came through.

Not only bunches of bananas, but also bunches of people with similar behavioral patterns, which I found to be rather interesting:

  • People with a large bunch of greenish bananas.  (I wondered if they were feeding a lot of people, or simply don’t care about the stage of ripeness when eating them.)
  • Customers trying to balance their fruit bowl with a couple each of greenish and yellow bananas.
  • Parents herding several small children, with bunches of bananas that had the requisite number of stickers for each child to have one. These were difficult checking assignments — not because of the parents, but because as a cashier I was also trying to keep track of the assorted tots with regards to alerting their adult to their safety, or asking their adult if the candy or toy items coming down the conveyor belt were approved purchases.
  • People with bunches of the organically-grown bananas (PLU 94011; all the organic produce starts with a 9).
  • Tired working folks picking up a sandwich from the deli, a banana, and an energy drink for their meal.
  • Frazzled parents rushing through with bananas, applesauce and bread. ( = “BRAT diet”: bananas, rice, applesauce, toast, a menu for dealing with diarrhea via dietary intervention.)
  • Frequent shoppers with just a few yellow bananas — I heard a lot of apologetic explanations about not being able to plan ahead for weekly menus and shopping lists, and wondered why some people felt the need to explain their purchase choices, unbidden.
  • A few elderly shoppers who explained that they couldn’t carry many grocery bags, or used frequent shopping as a means of getting out of the house.  After a while, I realised that such explanations were probably a curious form of chit-chat.

Although I began to develop my own “scripts” for appropriate cashier dialogs, I found that cashiering is a more challenging position than I had anticipated.  This is because there are a number of different kinds of simultaneous cognitive demands, involving spatial handling, operational sequencing, data entry, calculations, communicating in a noisy environment despite my auditory processing issues, struggling to identify numerous coworkers despite faceblindness, and socialising with the appropriate amount of eye contact and proscribed chit-chat.

Cashiering doesn’t just mean scanning groceries and making change.  I am not only trying to scan accurately and quickly, but also:

  • performing subtle security checks to make sure that no one is walking off with unchecked goods on the bottoms of their carts or pocketing the candy and other small goods near the register racks;
  • sorting the goods as I move it down towards the bagger courtesy clerk in whatever organisational method that person prefers;
  • querying the customer about coupons and whether they wanted the gallon milks bagged and if they want candy and greeting cards handed to them instead of bagged
  • explaining discounts and how gift cards work;
  • looking up endless PLU codes for the numerous types of untagged produce;
  • watching out for children’s safety;
  • greeting the next customer in line so they didn’t feel neglected during the wait;
  • trying to remember who the manager is that night for when I need to call them to void a mis-scan;
  • and of course, bagging while I check when the regular courtesy clerk has switched from my lane to another with greater need.

When bagging, bananas are a tricky item.  I can put vulnerable loaves of bread atop the fragile egg cartons, but aside from soft packs of sugar, toilet paper or maxi-pads, there are few items that will co-exist happily with bananas when packed in limp plastic bags.

Given that bananas are nutritious, don’t require refrigeration or heating, and can be eaten quickly, they have recently filled my lunchbox, er, meals-box that carries both my lunch and third meal.  I drive directly from one job to the next, with just 10-15 minutes for a snack to tide me over between 11 a.m. lunch and clocking out again at 8 p.m.  (I usually have a fourth meal when I get home; call these breakfast-lunch-tea/supper-dinner or whatever, but the third meal is usually rather minimal.)  So what’s the best way to transport a banana safely?  I drop it into a tall plastic drink cup.

Thankfully, I spend most of my time at the garden center end, rather than endless hours of checking. But in this latest addition to my repertoir of work roles, I have literally gone bananas.

Requesting your thoughts, please

Howdy folks,

This morning I’m again in pain and rather stiff.  I know that many of you have rather specialised knowledge, and would appreciate your thoughts on getting diagnostics.

I have a number of conditions, both common and uncommon, including Raynaud’s, migraines, cough-variant asthma, tinnitus & hyperacussis and Auditory Processing Disorder, motor tics, and assorted neurological glitches including prosopagnosia (face-blindness) and ADHD. Getting these things diagnosed over the past decade has been wonderfully helpful for those that can be medicated, figuring out how to make accommodations for those that can’t, and being able to prove to others that I have documented reasons for difficulties, and that I’m not being lazy or stupid.

However, the crux of this post is that I also have Read the rest of this entry »

Comfort-able

For the first time in months and months — far longer than it should have been, but there we are with the insane busyness of life — a friend and I got together at her house for dinner.

“You look like you’re finally relaxing,” she said after I’d been there a little while, and we decided to not wait in conversational limbo for the third person (who never did show).  “You were so stiff when you came in,” and she made reference by some expression (that now escapes memory) of how I was indicating being relaxed by behaving more normally.

Not “normally” in the er, Normal (neurotypical) sense, but me-normal, where I felt comfortable enough to sit and rock slightly, to not worry about making eye contact, to get a bit flappy at funny events or when agitated, to shed the pent-up motor tics.  To just be me. To “let my hair down” and to set aside unnecessarily restrictive social norms.  To eat my chicken and rice with a fork, and the still-crisp cooked green beans neatly with my fingers (as one does with fries or asparagus), because her table was Nicely Set for our aesthetic enjoyment and yet we weren’t standing on formality.

We talked about typical stuff, like the foibles of spouses, the concerns for college-age kids, the drudgery of eternal home repairs, the quirks of cats, of temperamental computers and the thrills of new mobile phones, of career changes, and the vicissitudes of economic times.

We also talked about atypical stuff, like the difficulties of college education and employment when dealing with various educational/neurological disabilities, of managing arthritis pain and joint issues, of the wonders of TMJ bite blocks, of dealing with the profound cluelessness of the general public for the extreme pain of migraines and how hospital Emergency (A&E) is a horrid place to physically be when in the throes of gut-wrenching-head-splitting pain and the snarkiness of some medics therein.

Crip chicks like we don’t diss on our disabilities, we diss from our disabilities.  It’s not poor-pitiful-me whining but the healthy pitch-a-bitch whining from someone who understands, even when our respective glitches are not all issues shared in common.

I need more social life, but there’s so much of ordinary socialising that I find enervating.

I’m not antisocial; the interest in socialising is not a binary form, where one either does it or doesn’t do it.  But over the years I have learned what I actually enjoy (as opposed to what one is “supposed to” enjoy).  My intro/extroversion levels vary wildly because some kinds of social interaction are nothing but draining, while others leave me (if not physically) at least spiritually recharged.

I’m not fond of socialising by large quantities of people all chattering with each other in the same room, where the conversations get all blenderized from my Auditory Processing Disorder, to where I end up trying to tease apart sequential fragments of half a dozen unrelated conversations, fruitlessly trying to follow just one voice or two, and reasoning out from fractured context what some of the mis-heard words could possibly be.

I’m not fond of socialising where the content gets watered down to less-consequential subjects of chit-chat, by dint of less privacy and some unwritten code of how long one is “supposed” to entertain time with another guest before moving on, and by the other unwritten rules of conversational quid pro quo, where my monologuing to fully deliver a story complete with back-explanations and thesis statements delivered at the end is discouraged in favor of witty repartee.

I like the time to mutually share and analyse our respective news, and the real, content-laden answers to our mutual questions of, “How are you?”  The real “How are you?” question, not the fluff of “How-are-you?” or “How-was-your-day?” that is the social minefield trying to distinguish between polite interested query of acquaintances and polite disinterested query of associates (that latter social coin that is all form and no content), or the mental quagmire of trying to answer “How-was-your-day?” when the question is so vague and our answers are so experientially linear and tangential instead of whatever the hell others were expecting.

I was comfortable — we both were comfortable — because together we had created a social environment that enabled our mutual comfort.  It was an agreement that had been developed by long familiarity and by various conscious decisions over decades, to create a friendship that fulfilled our individual needs over the culturally-proscribed forms.  True friendship enables positive interactions, and supports needs and affirms and enriches our lives.

Here’s a toast to real friendships!

That old social bugaboo. Again. Still.

So, recently I was observed while teaching an evening class, and a couple weeks later had the opportunity to meet and discuss the professor’s observations.  Except for one problem, most everything else can easily be resolved.

I was able to explain how the combination of illness and exhaustion were affecting me, as well as how accessory issues like Auditory Processing Disorder and tinnitus and prosopagnosia meant that I had to either work harder or do some things differently.  I explained how I took notes during the classes of what I wanted to do differently, to keep improving my teaching. I think that overall the discussion went well.

The prof had some really good suggestions, such as repeating questions, or asking students if I had answered their question.  He reminded me not to mutter to myself when looking for something, as it was distracting to the students.

Since the observation, I decided to have the students pick up their returned papers from a pile, instead of trying to pass them out. That had not worked out well.  Due to my faceblindness, I was carrying around my seating chart and asking each person if they were so-and-so before handing them their paper. Students can accept that the first week or two of school, but even though I have mentioned my problem more than once, the concept is really hard for most people to get their brains wrapped around.

Halfway into the semester, I’ve finally sorted people out with regards to my prosopagnosic identification crutches, but I’m still working getting the names attached to their individual gestalts.  The other week I was entering grades and finally realised that there’s a student who is in both of my classes!  That this student is rather generic looking, quiet, and sits in the back of the classroom doesn’t help, faceblindness-wise.

But after the whole review experience had passed beyond the anxiety level into the stage of applying the information positively, I am still sighing over one point.

I thought I had gotten past this. I thought I had it down pat. But apparently, I still need to work on making eye contact.

21,059

Holy Shit.

(And no, I’m not going to apologise for taking Shit’s name in vain…)

Normally I love technology.  When human beings mystify me in their endless capacity to engage in rudeness and biases and cognitive fallacies, I know that I can trust machinery to perform sensibly.  Sure, things break down, and sometimes they frustrate us because our mental models are incomplete, or the design is too poor to provide the right information for us to build accurate models. But once you understand how a system works, you can rely upon it to be predictable.

But sometimes the hardware is crappy, and sometimes the software is crappy, and sometimes it’s the “wet-ware” (me) that’s introducing errors, and when things get bad, it’s all of those.  And then I spend literally hours trying to get the simplest of tasks done.  Even ordinary things, like … getting messages.

1.

I have voice-mail messages to listen to during my brief lunch not-hour.  I’m sitting in a desk by the window, hoping that the signal doesn’t break up due to Invisible Wireless Velociraptors or whatever the hell makes the signal erratic from one minute to the next.

The first time around I miss half the message because I’m having trouble punching the mobile button and then getting it back to my ear quick enough to catch the beginning of the message.

The second time I dial back into my voice-mail, all I can understand is that there’s an Important Message from someone.

The third time around all I can understand is that someone whose name sounds like “Spencer Wallace” is calling me, and then two people in the room begin chatting and Mr Wallace’s message gets blenderized with their words.

I clap the phone shut in annoyance and go outside to redial my voice-mail a fourth time, and finally hear enough to realise that this is (A) a recorded message and (B) punching “1” will connect me to a live body … hopefully.

(Granted I have a lot of trouble understanding voice-mail messages because of my auditory processing problems, but you would think that a major mobile phone company could at least make sure their automated recordings were clearer.)

Yes, it’s a live body!  She informs me that No, it’s not Spencer Wallace, but Sprint Wireless. Damn, Live Body is mumbly or has an accent or is required to stick to scripts that aren’t helpful for me right now.  Rather than spend the rest of my break time trying to muddle out the situation, I thank her and return inside to bolt down the rest of my lunch before it gets disgustingly congealed. (The sad part is that microwaved fries/chips with leftover chile and cheese is the best lunch I’ve had all week.)

In addition to needing clearer messages, getting phone service inside of the school buildings where I work would also be a good thing — on one campus, I have to leave the building and walk across the open-air plaza and try facing cardinal directions in hopes of securing a signal.  Sometimes I have to pull up the antenna, hold the phone up to the sky, and stroll halfway to the next building to get signal.  Mind you, I am at a college in a heavily-populated area, not the intersection of Cornfield and Bob’s Road in the hinterlands.  [Name that movie reference!]

2.

Another voice mail was from the department secretary.  Plus, apparently I missed some e-mails from her as well.  Oh heavens, that’s right — I have a staff e-mail account in addition to the other e-mail account I use at the college. I had totally forgotten about getting the password set up a couple of weeks ago, because I was starting two jobs at the same time and both jobs required lots of paperwork and setting up user ID’s and passwords for various and sundry programs.

Yes, I have two e-mail accounts provided by the college.  Not just two e-mail addresses, but two separate systems that run on two different programs.  The secretary kindly reminds me of the URL to access my other account program.

Unfortunately, that is just the sign-in page for the second account.  It runs on Microsoft Outlook, and there are no helpful user links to click for “I forgot my password”.  (Insert Mac user’s rant about Microsoftware.)  An hour later, I have finally noodled through enough of the college’s Web site to have found where to set/re-set my password (and received no less than five unwanted pdf’s that automatically downloaded after clicking on an internal search-engine result).  Finally I can go back to that sign-in page.

Polysyllabic Expletive!

I have 21,059 e-mails.

I shit thee not; apparently the account was set up for me back in September of 2003. I had no idea it was there. I assumed that my other account was “the” account, because that was the address that all of the links and documents contained.

Obviously any e-mails before this year can be deleted.  There are so many because 99.9% of them seem to be list-serve messages sent to everyone at the college.

But Techies, GET A CLUE: it would be a good idea to set up a small routine to flag when you have users who have more than a couple hundred unread e-mails AND who have never sent any e-mails, so you can send them an alert by some means other than their e-mail account.

Crap, do I have some housekeeping to do. I have to read through the past month’s e-mails to make sure I’m not missing anything critical.  Anything else that’s critical, because I already missed something.

Then I have to figure out how to set one of the college’s e-mail systems to automatically forward to the other system.

Of course, that’s in addition to other little things this weekend, like teaching my Saturday class, writing the next three exams, figuring out how to use the grade-keeping program, grading the last two exams, and entering the two-week-point attendance (which information the secretary needs to drop anyone who hasn’t shown up).

3.

Now that I’m at home, I also have to listen to the household voice-mails on the land line.

Oh, and I ALSO need to slog through setting up my voice-mail account with the college as well!

  • Voice-mails on my mobile.
  • Voice mails at the house.
  • Voice mails at the college.
  • E-mails at home.
  • E-mails at the school.
  • E-mails at the college.
  • The other e-mails at the college.
  • The e-mails within class-access program for the two classes I teach (Blackboard, which has its own special set of glitches).

My inner child is now whining, “Do I gotta?”

I could just cry. Were I the prayin’ sort, I would be praying.  But I’m not. Were I the drinkin’ sort, I would be drinking.  But I’m not.  I’m the rocking sort. So I am going to sit here and rock, because that’s what I do when I’m stressed.  At this rate, I’m going to be walking around in circles and flapping too, before the night’s out.

Twenty-one thousand and fifty-nine.  Ye gods and little fishes!

“Mama said,

‘There’ll be days like this,’

‘There’ll be days like this,’ Mama said.”

The Shirelles, “Mama Said”

Coming down with some virus most likely, as the school nurse says it doesn’t look like strep throat (despite the sore throat that’s making it hard to lecture).  I can deal with that.

Headache, only ’bout a 4 out of 10, not so bad of itself. I can deal with that.

Ditto the tinnitus, which alas, seems to be making it more difficult to understand people, especially those students more than a few feet away from me, which is most of the time — why do the most soft-spoken students sit in the back corner?  The auditory processing glitches don’t help, either; I’m sure some of the students think I’m not paying attention, or am losing my hearing.  At least no one is going around yelling to me in the mistaken impression that volume = clarity.

Five hours sleep.  Definitely need to get to sleep sooner, and I would were it not for the class prep I have to do before and after classes.  Okay, now it’s getting really challenging.  I’m dropping words in the middle of my sentences once or twice an hour, and does that ever make me feel stupid.

I’m hungry because I didn’t eat much due to the sore throat & canker sore.

Two of the pieces of paper I really needed to have with me were not in my binder.  No, I’m sorry, I don’t remember the date of the next exam right off the top of my head.  No, I’m sorry, I haven’t memorized the ID labels to all of the slides (but I can tell you what’s important about the slide).

We were reviewing the results of the first exam.  This is the first college-level science class that many of the students have had, and some of them haven’t had a science class in years.  Bumpy ride.  It’s also the first full exam I have written, and every teacher knows the hidden hazards of writing such.

For some reason I decided to hand the graded exams out, rather than just letting the students pick their own test up.  I’m faceblind, and have not yet memorized the seating chart.  Definite planning error on my part.

My PowerPoint — that delightful gizmo that helps keep the tired, the distracted, the forgetful, the sick, and the first-time teacher from losing track of the game plan — the PowerPoint file on my flashdrive proved to be an older version that did not have the other half of the slides I needed to remind me what I was going to tell the class this evening. That too, of itself I could deal with, although the presentation was not at smooth as I would have liked, and we had to go back a few times and fill in something I had not mentioned earlier.

But all of these things together, oy vey!  I muddled through everything, but did not feel very brilliant or smooth.  I didn’t even have all of the lab equipment fully prepped because I had rushed in right before class.

And then shortly after class started, one of the professors came in to do a surprise Observation of me as a new instructor.

At least I didn’t have my trouser zip left undone, or have a strip of toilet paper (loo roll) stuck to my boot!

Mama said there’ll be days like this …

A few updates

The 92nd Edition of the Skeptic’s Circle is up, and The Lay Scientist gives us the latest press conference news as given by the Team Skeptic Manager Martin, from the state-of-the-art Olympic training facility in Beijing!  Prepare to be amazed — but never bamboozled.

The July issue of the Pain-blog Carnival is now up at How to Cope With Pain blog.  Readers share a variety of subjective experiences and treatment information.

Speaking of things painful, I put up a couple of photographs I modified to demonstrate some of the visual disturbances I experience during migraines.  Due to the trigger potential, I put these on a special page.  (The images are described for those with impaired vision.)  Alas, the Kid was laid flat by a migraine today — the preventative meds certainly help reduce the numbers of attacks, but they don’t completely eliminate them.  However, he reports that the new medication is a definite improvement over the old one, wooziness notwithstanding. A quiet “Hooray” for this encouraging news.

And although the timing isn’t quite “news” anymore, it’s not so late for it to be “olds”, so do check out the 42nd Disability Blog Carnival over at Pitt Rehab, where Greg gives us a break from the usual busyness for some summery relaxation at the beach, and plenty of great links.

As for me, I have to blame day-long teacher training class all week for my dearth of posting.  It’s been really good, but so intense — having to sit and focus on attending, listening, and learning for hours on end is hard.  Every day I run an errand right after class, and then come home to crash for a 20-minute catnap for my brain to do some filing before I can even think about cooking dinner.  The fatigue is a good reminder of what it’s like for all our students!

(Now if only the tinnitus would Shut Up.)

P.S.  Time to play ADD hide-and-seek: if you were a $100 calculator left in some random location by a teenager, where would you be?

P.P.S.  We already checked the breadbox.

Mental Menus

(WARNING: This is one of those posts that starts off tangentially. Sometimes that’s the way communication works.)

If you peruse the books in the travel sections of stores and libraries, you can find pocket-size volumes of useful phrases in different languages. While pantomiming works well for some situations*, there are times when having the actual word is best for all concerned. (For example, being able to ask a shopkeeper, “Tampons?”)

* I believe it was travel writer Rick Steves who noted that one does not always need a phrase book — merely pointing at your injured foot and screaming does get the point across just fine.

Sure, there are plenty of little words of politeness that are great to memorise, please, thank-you, excuse me, and the rest. But these little bits do not a conversation make. And anyway, phrase books are always of limited use; anyone who has tried such can explain the inherent problems that result by being about to make statements or ask questions, but not being able to understand the answers, or know what you are to do with the other person’s reply.

And that’s where we sometimes end up when wandering through the awkward territory of small talk. As I have blogged on before (“Small and Medium-size Talk”), the big sorts of talk, those that are the exchange of real information on subjects of mutual interest are generally rather easy — it’s the medium-size talk that is the social dance of chit-chat which is fraught with difficulties.

But there are days when the very-small talk of passing through and exchanging greetings seems to be a strain. Read the rest of this entry »

More Cross-Cultural Communiqués

What do you do when you are trying to get a technical project started, or get feedback on it partway through, or even get it finished, and some of the people with whom you work have this strange inability to just reply to an e-mail or memo ? You need information — simple data, and maybe a higher-up’s preferences — so you can perform the tasks for which you were hired. That’s what you are there for. Why is it so hard to get simple answers? (One feels like Johnny-Five from the movie Short Circuit, “More input!”)

Asperger’s / autistic employees everywhere express this same complaint. Just give me the information so I can do my job. But what if you also have Auditory Processing Disorder as well? The Unruly Asides blogger ran into this recently, where she describes in a recent post how all she needs is some responses from a board member to produce a video. But the other person won’t simply reply with the required information in an e-mail. They want to chat. On the phone, because they don’t even work in the office. Oy!

If you also have APD, you need information given in a manner that doesn’t work against you and make things more difficult. You don’t want to appear foolish, forgetful, rude, or uncaring because you are having problems simultaneously Read the rest of this entry »

Headlining

I’m going to tell you a story.

It’s about a recent presentation I gave on Auditory Processing Disorder.

Afterwards one of the attendees had some specific questions,

and I had some ideas to offer. Here’s how it goes:

One of the things that I had mentioned that APD wasn’t really “curable”, but that one could improve some skills to cope with it. She was concerned because the school had released her son from therapy some years ago, and yet her son was demonstrating obvious difficulties again … she was concerned and puzzled.

As I’ve mentioned before, a person can “lose their label” by having achieved the proscribed psycho-educational goals. This means that the particular skills have been met so that the problem is no longer severe enough to warrant the diagnostic label. The therapists, the school district that may have employed them, the family, and the child have all succeeded in the neatly-documented IEP goals. Whoopee!

But in cases like this, although the child’s enunciation may be much improved, and his phonemic awareness sharpened (meaning he is better at discriminating between different spoken sounds), that does not mean the APD has necessarily gone away.

So why was the boy having so many of the familiar, discouraging, “Huh?” moments again? Read the rest of this entry »

Fishing With the Wrong bAIT

The other day (er, week) I promised to post some thoughts on AIT, so here they are.

There are plenty of treatments offered to cure or improve Auditory Processing Disorder (APD). Auditory processing is not just about hearing. Hearing is the sensory business that the ears do, and the auditory processing is what the brain then does with the signals from the auditory nerves. The ears also have the semicircular canals, which provide us with information about balance — that sense of balance, along with the proprioception of our joints, ligaments, muscles, tendons and bones, give us the sensory information we need for coördination. In auditory processing disorder, the sensory part of hearing often works just fine; it is not a hearing problem, it is an understanding problem. The ears are getting the information and are sending suitable signals; but there are some “tangles” or “speed-bumps” in the interpretation of the signal.

One treatment popularly lauded on Web advertisements is Auditory Integration Training (AIT), which is supposed to also help problems related to tinnitus, hyperacussis (oversensitivity to high-pitched and/or sudden noises, or sound in general), autism, ADD or ADHD. Depending upon the practitioner, AIT may also be sold as effective treatment for dyslexia, stuttering, depression, speech delay, and even head-banging or echolalia. That’s quite a list of highly diverse issues, which immediately sends off mental warning bells.

AIT was developed by Dr Guy Berard, who is also the author of the (out-of-print) book, Hearing Equals Behavior,

“Everything happens as if human behavior were largely conditioned by the manner in which one hears.”

(Hmn, I bet a lot of Deaf people would beg to differ with Dr Berard’s assertion!)

So how is this method supposed to work? Read the rest of this entry »

ALDs in the Classroom

On my page about Auditory Processing Disorder, someone had enquired if using ALDs (Assistive Listening Devices) in the classroom would be helpful. Her daughter, like many students, did not want to be singled out by using them and perceived by her peers as being “weird”. I thought I would expand upon the response to include more information. Please note that these suggestions are slated more toward APD and general educational design suggestions, rather than toward ALD equipment for students with severe hearing loss.

Although ALDs do work to an extent, they may not be the best choice for some situations. We should also note that although schools focus on the deficiencies of the student’s hearing, listening comprehension, or attention, quite frequently some of the deficiencies are really in the design of the school classrooms. These make it more difficult for students with APD, ADHD, or hyperacussis, and they also make it more tiring for the instructors who must spend all day trying to talk over noisy environments, and for the other students. (More on this aspect in the latter part of this post.)

One type of ALD is an FM or infrared system that involves a microphone (for the teacher) and receiver headphones (for the student). Naturally this is highly visible, so not everyone wants to be singled out in this manner.

The microphone must be positioned correctly, so the speaker’s voice does not fade in and out of range (you may have experienced this yourself when sitting in presentations or conferences). Of course, both pieces of the equipment needs to have fresh batteries and be in good repair, or it’s useless.

Sometimes microphones with speakers are recommended for teachers so they can broadcast better to the students in the back of the room. Usually the speakers are not high quality, and such systems just add to the amount of noise, rather than improving the clarity of communication!

Because the microphone is used by the primary speaker, it presents problems if anyone else in the classroom speaks. Either the mike is passed around when there are group discussions or questions, or the listener does not get comments and queries by the other students in the room. The latter not only removes a layer of information, but can also lead to reduce social inclusiveness because the person with the headphones loses the small commentaries that may not be part of the formal instruction, but are part of the socialisation and informal culture of the classroom. Even if the microphone does get passed around, the other students’ lack of familiarity with holding the mike where it can pick up their voices and the considerable junk-noise of passing the microphone do not improve the listening experience.

I will say that there are special situations when an ALD such as this would be especially good, such as when the teacher is doing instruction during a bus ride, in noisy places like zoos, factory tours, science museums and so on. It should also be made clear (and probably reminded) to the teacher that PA announcements are often unintelligible to people with APD (or hearing loss) — this means that messages will need to be passed on, and the teacher should not rely on the student being able to follow those announcements, except where they are simply following the herd of students. (I’ve had my family page me at airports and other places, and I not only couldn’t understand the page, I couldn’t even tell that I was the one being paged!)

There are alternatives to using an ALD, which should be considered and probably tried before deciding to use the ALD.

Students with APD should get “preferential seating”, which is often used for ADHD students as well. This means sitting near the teacher and/or instruction board or instruction area. The point is to reduce the amount of space and distractions between the student and the source of information. This is especially helpful if the student does some lip-reading (not everyone with APD is even aware they do this).

The teacher should be careful to not address the students when writing on the board. (Unfortunately, most teachers start out very conscientious, and then after a few days revert back to their old habits.) The student will have to get in the habit of asking, “What was that?” or “Can you repeat that?” or may have to advocate after the fact. Meaning, when everyone has started on the work, raising her hand, and then when the teacher comes by to talk with her, point out that the teacher was talking to the board (again) and she couldn’t understand everything. She could also have a special hand-signal to make when the teacher turns back around from the board, to alert the teacher of the missed communication.

Have the instructor turn on captions to broadcast media — these are good for the ESL students, and they help the other students catch the terms and spelling of details they need from the program. It’s best for the teacher to not point out that they are turning on the captions for your daughter specifically — just turn them on, and if anyone asks, simply explain that they are on so everyone can more easily understand the dialog. That’s the truth; there’s no one need for one person to be singled out.

As I referred to earlier, the classroom design can aggravate APD and ADHD difficulties. Not all of the problem should be set at the feet of the student!

“Noise” is composed of a number of factors. Most people just think of the volume (measured in decibels). But there is also the complexity factor — it’s hard to focus on one sound source when there are other sound sources going on at the same time. There is also the noise-to-signal-ratio factor where clarity is important, and clarity can be lost from not just background noise, but also echoes, unclear speech, and poor transmission equipment (fuzzy speakers, tinny receivers and so on).

ALDs are often recommended because the student (or employee) is having trouble hearing or understanding because the room is atmospherically noisy. This is in large part due to bad environmental design — too many hard surfaces, noisy HVAC (air conditioners, radiators, fans), various kinds of equipment, lots of voices at once and so on. Please note that “noisy equipment” does not mean it has to be loud by OSHA standards — students who are distractible and/or have APD problems and/or hyperacussis will find the noise levels in an average classroom to be more of a problem than many of their peers. (This also applies to many students with autism.)

Things like area rugs, draperies and acoustic tiles (or new, much more effective acoustic tiles) will help muffle a lot of the echo and reverberation. Turning off equipment when it’s not being used helps more than people realise, and is also important to save energy. If there are times when multiple instruction is going on (for example, an aide helping a few students) then setting up an area with a couple of those portable, upholstered cubicle-type dividers will help not only your student, but also be more effective for the aide and the other students. It’s always easier to “sell” an idea when the benefits to numbers of people are described.

I don’t believe that students with ADHD or APD should not even be in settings with the “open classroom” design that was in vogue some decades ago, as having several different classes and multiple instructions and larger numbers of students milling around is just too much to deal with effectively. Schools that have tried to retrofit open classroom areas into individual classrooms often end up with inadequate materials (due to budgetary issues). Unfortunately, merely pulling a folding divider wall between two rooms does not adequately damp all the noise that seeps through. A suspended (common) ceiling that is sometimes added along with the partitions does not effectively mute sound, but rather serves to transmit the sounds from one room to the next.

Likewise, rows of file cabinets are also poor excuses for walls between “rooms” in libraries or other resource rooms. It’s hard for adults to work in such environments, so I don’t know why we expect that children should find it easy. Furthermore, pretending that experiencing classes in such poorly-divided greatrooms is good practice for working in “cubicle farms” is nothing more than piss-poor rationalisation, what Alfie Kohn refers to as “getting hit on the head lessons” (justifying bad educational practices as preparation for more of the same).

Sadly, there are a great many districts that are suffering from insufficient classroom space. Teachers and students end up in a variety of locations that were never meant to be classrooms, and have had only minimal modifications, usually hanging up a whiteboard and cramming in some desks and chairs. In addition to features like thin, hollow “temporary” walls that have been there for years, odd room shapes or cramped conditions (including putting the board on a free wall rather than one that works with the traffic flow or desk orientation), and ventilation quirks we often find that these ad hoc classrooms are poorly placed with respect to other functions of the school.

Usually school architects try to create noise-buffer zones between the classrooms and the other functional areas of the school, such as the gymnasium, lunch room, kitchen, power plant, or specialty classrooms such as shop (wood/metal/engine working) or band instruction. These desperation classrooms are stuck in all sorts of bad locations, even in part of the custodian’s storage area. I remember having my Government class in a tiny room set in the back hallway by the gymnasium (it was probably once the coaches’ office), and the students reached the room by virtue of going through the boys’ or girls’ locker room. We spent the entire time assaulted by the locker room and pool chlorine smells, and the instructor had to talk over the noise from the adjoining gymnasium and natatorium.

Many older school buildings were designed in eras when passive lighting and ventilation were more commonplace. These frequently have high ceilings hung with banks of fluorescent lights and tall windows that are usually shaded by metal blinds. Those high ceilings and the hard surfaces combine to accentuate the noise echo and reverberation, and the banks of fluorescent lights are often noisy in their own regard. Because the fans are beneath the windows, the air flow will create ripples and rattles in the blinds, even when teachers try to pin down the bottoms of the blinds with stacks of extra textbooks. These are the sorts of rooms where general amplification speakers are especially un-helpful.

In summary, Assistive Listening Devices are helpful for reducing some of the noise-to-signal ratio.  However, they cannot substitute for effective interpersonal communication skills, and can only mediate some kinds of environmental noise problems.  They are not an easy fix to the problems faced by a student with APD.  As I have mentioned before, our various assistive devices do not remove our cure our problems, but rather, are part of the system of coping methods.

Mystery Jam and Other Achievements

I lost a label. I don’t mean the sticky label missing from the jar of “mystery jam” in my pantry (the goo is yellow, so I’m pretty sure it’s last summer’s ginger-pear jam), but rather a diagnostic label. For many parents, one of the highlights or milestones in life is for their child to “lose the label”.

Once-upon-a-time the getting that label (or labels) was highly important, so everyone knew what the problem was (well, sorta) and so the child could get some kind of educational or therapeutic services. Getting the label was oft times a relief because it meant that Someone Official had recognised that the child’s problems were not due to bad parenting, moral failure, or general laziness on the child’s part. Usually parents suspected something was “off” for quite a while, so having that validated is a bit of a relief.

Of course, then once the suspicions are confirmed, there are often new kinds of feelings while adjusting to the new daily reality. Frequently there are skirmishes with school districts or other bureaucracies. Sometimes there’s a bit of a grieving process for not having the perfect little darlings imagined during pregnancy. Some families have issues with relatives not understanding, accepting or even “believing in” whatever problem with the child is dealing with. Nasty episodes can erupt in extended families if one of the parents is accused of “causing” the problem or bringing “bad blood” to the lineage.

And of course, a number of parents eventually realise that the child’s issues are echoes of some of their own issues. Going through these things is very complex, sometimes stressful, and often enlightening. Having a child with a disability does not automatically tear a family apart or make the siblings resentful; depending upon how the parents respond to the issues and to each other, it can strengthen the family members’ ties to each other, and lead people to be more compassionate and less judgmental.

So losing the label can mean that the family has (finally!) managed to get beyond a lot of those stresses. Or so it seems.

But what does it really mean to “lose the label”? It can mean a number of things. Read the rest of this entry »

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