Box? What box?

When I first read this job advert, I began to weep. I didn’t know anyone else understood what it was like to be this sort of person – to have this kind of mind – much less that anyone out there valued it.

Miscellaneous Vacancies

Are you:
• A creative, articulate scientist with research experience in biological, medical, chemical, electrical, mechanical or materials engineering disciplines?
• A lateral thinker, passionate about science and your own discipline, yet able to think outside of the box and make connections to other fields?
• A great listener with highly developed interpersonal skills, with career goals in commercialisation, technology transfer or business development and able to manage relationships with clients in a highly fluid environment, respect confidentiality and work with people across all levels of an organisation?

Do you:
• Thrive on change and derive great pleasure from making connections between seemingly unrelated ideas?
• Get a buzz from finding new routes that others have not trodden before and yet would be comfortable with working collaboratively to develop your ideas and those of others without expectation of extra personal or monetary recognition?

Sadly, the closing date for the position had long since passed by the time I read it. But like so many dangerous ideas, knowing that such a thing even existed reverberated up and down my mental timelines.

In graduate school, the entomology professors didn’t understand how or why I kept making connections between ecology and learning disabilities. Such details were certainly not necessary to researching insect behaviour, no matter how much they might apply to some of the students in the department.

In a recent New York Times article, “Innovative Minds Don’t Think Alike”, Janet Rae-Dupree describes the “so-called curse of knowledge” where experts are so familiar with traditional means of getting things done that their expertise gets in the way of innovation. The article also describes how bringing in people who have other fields of knowledge, but who are not bogged down by the specialist jargon that reinforces and limits the current understanding, can free up boxed-in thinking and create new ideas.

It’s a conundrum how organisations (academic or otherwise) claim to want innovation, but are resistant to novel suggestions that often go against what everyone knows will work. But as the saying goes, “If you always do what you’ve always done, you’ll always get what you always got.”

More recently, an education professor was not only unfazed by my entomological background, but thought it “wonderful” and mentioned that Jean Piaget had worked on snail behaviour before working with children. I was flabbergasted. I so rarely get such unexpected, sincere kudos that such a moment can keep my spirits buoyed for weeks.

“Thinking outside the box” has always been easy – rather, it’s trying to figure out just what the hell others perceive as The Box that’s hard. I’ve spent decades struggling to understand what people’s boxes are like, how they construct and use them, where the boxes came from, and when I am supposed to intuit and conform to those boxes.

Unfortunately, because of everyone’s jargon-constrained knowledge boxes, it’s hard to describe my own kind of lateral, inter-disciplinary thinking. Trying to convince others that they can benefit from such seems almost beyond my abilities, as I’m not a natural salesperson who can schmooze and easily persuade others.

Meanwhile, I’m still buzzing about, looking for a good niche. At least now I have a few more um, “buzz-words” that will help me describe what I can offer.

Advertisements

“Superstition ain’t the way”

Very superstitious, writing’s on the wall.
Very superstitious, ladder’s ’bout to fall.
Thirteen-month-old baby broke the looking glass.
Seven years of bad luck, the good things in your past.
When you believe in things that you don’t understand, then you suffer.
Superstition ain’t the way.

(Part of the lyrics to “Superstition” by Stevie Wonder)

I recently heard on BBC Radio 4 news a story about an effort by the AfriKids organisation located in Ghana. From the AfriKids Web site, they explain:

… a child born with deformities or defining characteristics in the area was considered a ‘spirit child‘ who must therefore not be allowed to live with humans, for fear they will bring bad luck into the lives of the family. Such children, the paper gathered, were subjected to various forms of inhumane treatment aimed at terminating their lives.

To prove their innocence, the deformed infants are given deadly locally prepared concoctions, which the people believe can only kill ‘spirit children’.The practice has been with the people for ages. Until the interventions of some NGOs including Afrikids, the people in the area generally accepted the practice as a traditional norm, which should be conserved and continued.

There are a number of reasons why a child may be born with various deformities, including random genetic chance, maternal malnutrition, and diseases such as polio or rubella. Of course, polio and rubella can be prevented by vaccination. Other news in recent years included Nigeria, where polio vaccines were strongly resisted by local authorities (this article from New Scientist, 18 November 2003):

Laboratory tests by Nigerian scientists have dismissed accusations that the polio vaccine given in a mass immunisation campaign in the country is contaminated with anti-fertility hormones and HIV.

The World Health Organization (WHO) drive to rid the world of polio hit a major obstacle in October when immunisations were suspended in three regions in northern Nigeria due to rumours that the vaccine was laced with the HIV virus and hormones to render women infertile.

Some Islamic clerics suggested the vaccine is part of a Western plot to depopulate Africa. However, test results from experts recruited by the Supreme Council for Sharia in Nigeria gave the all-clear on Tuesday.

“The vaccine is free of any anti-fertility agents or dangerous disease like HIV,” said Abdulmumini Rafindadi, at the Ahmadu Bello University Teaching Hospital in Zaria, according to the Nigerian newspaper The Guardian.

But before you start getting cocky from your ethnocentric place in some Westernised, “first-world” country, stop and remember: superstition isn’t just for the illiterate third-world masses. Cloaked in modern pseudo-science or religious devotion, it’s enabling our neighbors to abuse and kill children.

Consider Amy Burney, a five-year old girl from the Bronx (New York City) who was poisoned in April 1997:

Convinced that the child was possessed by demons, Angelee Burney and Ms. Downing forced her to drink a toxic brew of ammonia, pepper, vinegar and olive oil, the police said. The women wrapped her body in a floral sheet and tossed it in the garbage bin outside their apartment building in the Kingsbridge section, the police said.

Consider Terrance Cottrell, an eight-year old autistic boy from Milwaukee who was suffocated during an exorcism.

When Junior arrived at the Faith Temple Church he was asked by the minister to lie on the floor. The boy’s trainers were removed to lesson the blows of his kicks. Sheets were also wrapped around him to stop him scratching. During the “prayer” service, Hemphill reportedly used one hand to hold Junior’s head to the floor and one knee to press down on to the boy’s chest. Cooper, meanwhile, held one of Junior’s feet while Tolefree held the other. Another woman, Monica Carver, was lying across the boy’s chest. All the while, Hemphill whispered into Junior’s ear, ordering the demons to leave him. Junior apparently struggled throughout, with Cooper and Tolefree occasionally losing grip of the boy’s feet and the 157lb Hemphill having to bring Junior forcefully under control.

It was only after two hours, however, that the adults noticed Junior was blue in the face, soaked in his own urine and not breathing. When Hemphill heaved himself up, both he and the boy were drenched with sweat. But the boy’s body was lifeless.

Or an un-named 14-year old autistic boy who was severely beaten during an eleven-hour exorcism during August of this year.

Police say the exorcism turned violent and that Uyesugi, under the guise of ‘God’s work’, battered and beat the boy.

“Sticking fingers into the boy’s mouth while he was restrained on the bed, causing him to vomit. And this happened several times. Family said that Mr. Uyesugi told them this was to cast the demons out,” said Detective Swain.

Police say Uyesugi also punched the autistic teen in the face during the ritualistic beating that lasted for eleven hours.

And of course, there are plenty of well-intentioned but misguided parents in the US and UK who refuse to get their children vaccinated for fear they might “catch autistic”, thus allowing the recent outbreaks of measles and mumps, and the resulting disabilities and deaths as described in this previous post.

Oh sure, we’re all intelligent, well-educated peoples. No one does horrible things here like they do in other parts of the world.

Don’t you believe it.

When you believe in things that you don’t understand, then you suffer.
Superstition ain’t the way.

Epidemiology Bass-Ackwards

Again.

A short news item caught my attention today. Unfortunately, it looks like a fabulous example of bad science, with lousy sampling methods, correllation trying to equal causality, and a heavy dose of confirmation bias. Add in a big dose of well-connected media personalities, and it’s absolute chum-bucket for indiscriminate news sharks.

Dr Lawrence Rosen thinks there is probably some kind of “environmental problem” causing an “autism cluster around St. Anthony’s school in Northvale”, New Jersey. Why is that? “The initial study included interviews with 24 current or former school employees who had children after working at the school. Their 42 offspring included 24 with developmental disorders — and 10 of them have autism.”

Oh, and “The school serves children with autism and other learning disabilities.” Are we not surprised. ( /dry humor )

Saying that something around the school “causes” large numbers of autistics (et cetera) is like saying that swimming pools “cause” large numbers of bikinis. Read the rest of this entry »

Weights and Balances

Today I joined hubby for a short visit to the health club. I’d not been in a large number of months, but decided that this would be a good opportunity to scope things out with regards to what they had. I need to get back into the habit of getting some regular exercise. I figured that scoping things out ahead of time and figuring out what I needed, and when I was going to go, would be a good way of easing back into the habit. Why wait until New Year’s Day to make a resolution?

There are a number of good reasons for me to get some exercise, but an equally weighty number of reasons why it’s been increasingly difficult to do so. Read the rest of this entry »

Fun with lining things up

Amidst all the shopping and cooking and driving out to fetch people and trips to the market and other sundry holiday activities, there are a few quiet spots in my holidays. I recently made a Clove-Orange, a sweet-smelling object sometimes used to scent closets or wardrobes. The fruit eventually dries out, leaving the cloves stuck in a leathery-hard sphere. If kept someplace dry, it will remain in this fragrant condition for months on end.

It’s a simple task to stick whole spice cloves into an orange (or in this case, a Clementine) if first one uses a thin tool to pierce the skin of the fruit. I usually use a pointy Japanese chopstick (hashi, pictured) but one could also use a darning needle. The purpose is to just pierce the skin, not impale the fruit, to more easily plug in the cloves without them crumbling. Naturally, I like to line up my cloves, but they may be placed in any pattern. The finished orange can be tied up with a ribbon to be hung up, if desired.

I find the activity to be very calming, and a lovely sensory experience. I’ve done it as a horticulture-therapy activity with students as well. It’s one of the few crafts that doesn’t worsen for having been forgotten in a locker for a few days. They do not, however, survive being dumped in backpacks with textbooks, so plan ahead by having some small cartons for transporting them home.

Stories of Yesteryear

Today I finally got around to decorating the tree, which shows you just how behind I am with things. (But the bedroom painting and sofa-futon assembly is done!) The Kid chose to go shopping instead of decorating, and I requested some wax worms from the pet store (for my Fiery Searcher beetle), and some groceries. There was about a two second pause, and then the kid asked me cautiously, “Those wax worms aren’t related to the groceries, are they?”

After reassurances to the negative, I handed off the extended grocery list, and started opening the crates with the holiday stuff. While decorating the tree, I remembered some stories of past years. These are from the:

“Some Days I Just Don’t Understand People” File

Some years ago, my mother asked me what I wanted for Christmas. “We really need new towels for our green-and-white bathroom,” I volunteered. Our current towels were over a decade old, and getting raggedy with holes and rips and threadbare spots.

Christmas came, and I unwrapped a large box of towels. It was one of those coördinated sets, two bath towels with two matching hand towels and two matching washcloths. And they were all pink. I don’t like pink; I haven’t liked pink since I was a small child. Nothing in my house was pink, especially not my bathroom. Each towel had a big embroidered appliqué on it, with the bath towels having dinner-plate size areas that were too stiff and rough to make them usable for drying off. I was unfolding a towel and asked her, “Do you think they will soften up after they’ve been washed a few times?”

“Oh you’re not supposed to use them — they’re just to hang up for show,” explained my mother. She was pouting because I wasn’t ecstatic to have a functionless gift. This was not unlike my birthday, when she had given me a heavily-ruffled blouse full of scratchy lace, that was four sizes too large.

~~#~~

A few years later, I worked temporarily at a local garden center on weekends and evenings. They had extended their evening hours until 9:00, but few folks had caught on yet. Maybe it was the freezing rain on that Friday night, and the snow on the Saturday afternoon. But by Sunday the roads had been cleared, and the customers were finally trooping through the store more-or-less steadily.

I was shelving, and overheard a customer ask the store manager, “Do you know anything?” (Now what would Miss Manners reply to that?)

Some wit at the corporate head office decided to put the dog chews and bird seed on sale for 1/3 of their regular prices; I think that’s what they mean by a “loss leader”. So customers would trot in with their coupons to buy just 99 cents of seed and leave again, after much wandering around and asking questions about the other merchandise.

“Can I buy just nine feet of this eleven foot tree? The top’s not really pretty.” No, they didn’t want the tree merely trimmed down (as people sometimes do), they wanted to pay for just part of the tree. But because we bought an eleven-foot tree from the grower, that was the price we had to sell it for. Unlike a side of beef that gets pieced down to primal cuts and then steaks, Christmas trees are a whole-unit item.

“Where are the extension cords?”
“They’re all over here,” I answer, pointing to a small end-aisle display of brown lightweight extension cords and orange heavy-duty extension cords.
Customer, disdainfully: “I don’t like this brown; do you have any blue ones?”
“No. All of the extension cords we have are over here,” I answer, smiling despite chapped lips. This was a small garden center folks, not a gianormous hardware store that stocks extension cords in “designer” colors.

The phone rang.  I picked up the receiver with one hand, and use the other to cover my free ear and block out the background noise of the endless tinny Christmas carols that were giving me a headache. “Garden center and pet store, this is Andrea,”
“Do you have any ponderosa pines?”
“No, but we do have white pines, with or without flocking.” (“Flocking” is the white artificial snow stuff they spray on trees.) I was thinking, ponderosa pine Christmas trees?
“I want a ponderosa pine to plant outside.”
“We don’t have any balled-and-burlap live Christmas trees to plant outside, ma’am.”
“I don’t want a Christmas tree, I want a landscape tree.”
In December? The ground had been frozen for weeks; everything was covered in snow and ice! “No, I’m sorry ma’am, we’re not selling landscaping materials at this late date.”

I was standing with a customer in front of the ornament rack, pointing to hooks and replacement parts for Christmas tree lights (fairy lights). “Do you need any ornament hooks or or replacement bulbs?” I asked, always ready to save customers an unnecessary trip back to the store.
“No, just these balls,” she replied, holding a box of glass ornaments.
“Then I can ring that right up for you … That’ll be $13.92. Do you want a sack for those?”
Customer, staring at her box of purple glass balls, “Oh, do you have any of that wire stuff you use to put these on the tree?”
“Yes,” I responded, unplugging my key from the register and walking back to the aisle where we just were. I held up two different packages of hooks, “We have long ornament hooks, and short ornament hooks.”
“Oh. What’s the difference?”

And this, O Best Beloved, is why I don’t work in retail any more.

Circling Over O’Hare

I am in the waiting place. Again. Still. It’s annoying.

I can be patient; I’ve spent hours waiting and watching for things to happen when doing outdoor photography, waiting for the sun to be covered by a cloud so the light is not so contrasty, waiting for the eternal wind to not blow so hard, waiting for an insect to alight somewhere, waiting for it to quit raining, et cetera.

But at the core, I like to operate and make my decisions based upon facts. A lack of (what feels like) sufficient or useful data leads me to milling around, stuck until I can figure out where or how to get the information I need. I also like to know what I’m going to be doing, so I can be prepared and plan around the other things in my life. One of the ways that I reduce stresses in my life is by limiting these free-floating anxieties.

Merely being in the limbo of putting things on hold because I’m stuck waiting is annoying, but I’m an adult. I can deal with feeling like I’m stuck on a dreary flight circling over O’Hare airport, waiting for a runway to free up. There’s no point in having a hissy fit because that won’t change anything. So why am I grousing? Read the rest of this entry »

Smack me upside the head

Now I remember why I used to thump my head on the wall.  Or smack my skull with the base of my hand.  Because sometimes doing so would interrupt the sudden, sharp feeling like I’d been axed in the right parietal bone (above the ear).  I’m not talking self-injurous episodes of head-bashing, just carefully-applied sudden pressure. The good news is that after several repeats of these episodes, I realised that for all its unexpected intensity, the Blitzkrieg of headaches is also brief and naturally passes after a minute.  The bad news is that the “ice-pick headache” variety of migraine will repeat a number of times during the course of a day (one can understand why trepanning seemed like a reasonable treatment once-upon-a-time).  Hot bath didn’t work. Time to crawl in bed. Better unpack an Imitrex from its devilish over-packaging in case things don’t improve. This better Go Away — I have a wall to finish painting, and other things to do on my first day off school.  Blargh.

I Have Something to Tell You

Well, with all the buzzing going on around more noisome news, I was certainly glad to find something sweet during a recent forage of my news source trapline*. It’s a new-ish piece of Assistive Technology (AT) for communication! But this post isn’t just about a nifty little mechanism (which I’ll get to in a minute); it’s about the social stuff around using ATs to communicate.

A variety of disability bloggers have discussed different electronic mechanisms they use for communicating with others**. There are a number of hurdles faced by users of augmentative communication (aug-comm), and unfortunately they are often greater in number than other kinds of AT. With any tech, there’s always the issues of finding out about it, trying it out, affording it, the learning curve, dealing with maintenance issues, upgrading to newer models when something gets too worn out or is simply too archaic for customer support or technical compatibility, working it in with other hardware in your life (“It’s a great piece of equipment, but my chair doesn’t come with a trailer so I can’t simply schlep it everywhere”) and other annoyances (“How is anyone s’posed to type on these tiny buttons?”).

But communication AT has its own strange set of social-disability type hurdles. Our culture so inextricably links communication with speaking Read the rest of this entry »

The Bee That Roared

Roar Large Lighter

I’m quite flattered to have received the “Roar for Powerful Words” Award from abfh. This award, initiated by the Shameless Lions Writing Circle, is to “encourage and celebrate good, powerful writing on the Internet / blogosphere”. It is given to “those people who have blogs we love, can’t live without, where we think the writing is good and powerful.” Each person giving the award then gets to select “three things they believe are necessary to make writing good and powerful” and nominate five deserving people. You’ll need to visit abfh’s blog, Whose Planet Is It Anyway? to read her own descriptions of good and powerful writing, and to learn of her other nominees.

For my own qualifiers, I believe that good, powerful writing originates from someone who is authentic to their own experiences, is clear on their own vision for what the world should be like, and is both thoughtful and articulate in expressing these things.

All of these bloggers have ATTITUDE. There’s not a “compliant”, unduly self-abnegating wallflower amongst them, bless their wicked little souls. They have words and they know how to use them, both the four-letter kind and the four-syllable kind. A thoroughly diverse group of bloggers, each has a different perspective on their particular interests. If you’re not familiar with them, I suggest reading a couple weeks’ worth of posts, to get a good feel for the subjects covered (none of these people are shy about posting a rant now and then, but rants don’t a blog make).

In alphabetical order (because otherwise trying to organise this bunch would prolly be like herding cats):

Cilla Sluga at Big Noise

Ms. Crip Chick

Joel Smith at NTs Are Weird

Shiva at Biodiverse Resistance

Wheelchair Dancer

You folks ROCK!

The Writing on the Wall

OMG Zombies! The leper-outcast-unclean-undead are on the move, seeking to steal away our chilluns and Eat Their Brains!

Except I’m not talking about the latest sci-fi movie with Will Smith. I’ve finally gotten to the point to where I can speak reasonably about the horrible “ransom notes” campaign by the NYU Child Study Center. Their billboards and magazine ads describe children with OCD, ADHD, depression et cetera as being stolen away and held hostage by their disorders. In an article in the New York Times, the organisation’s description of the effort says,

We hope to both generate a national dialogue that will end the stigma surrounding childhood psychiatric disorders and advance the science, giving children the help they need and deserve.

Excuse me? How the HELL does this horrifying campaign “end the stigma”? The stigmas that people with such conditions face are NOT caused by the conditions, they are caused by societal attitudes! Such negative, one-sided publicity only reinforces such.

The demonisation of differences creates Read the rest of this entry »

Rudolph Redux

I’m trying to paint a small bedroom (doing so slowly, over the course of the day), which means no time for blogging.  But it’s also that time of year when the “Rudolph the Red-Nosed Reindeer” animated Christmas show appears on television.  There was always something unsettling about the whole story of this reindeer with the glowing nose, and it wasn’t until late in my own high school years that I figured it out.  Here’s a link to my post from last year, “Games People Play (off and on the court)“.

Some things never change.  ::sigh::

It’s a Real Pain

Bath time. I steady my balance by holding the sides of the tub, and ease myself into the hot water. There I play “What’s My Bruise”, trying to figure out how I acquired all the motley souvenirs. There’s a large turquoise blodge shaped like Antarctica on the top of my right foot, a constellation of dark purple marks on my left knee, several random fading-green spots on my forearms, various dull plum-coloured dings on my thighs and calves, and a deep tissue olive-green zone the covers most of the fleshy area between my left thumb and the back of my hand. As usual, I have no idea how or when these happened. I bruise easily, and between my joint hypermobility and crappy proprioception I’m always bumping into things. There’s nothing to do about the bruises, but I monitor them to make sure that things do heal up and disappear within a couple of weeks (my mother had diabetes), and to watch for infections (like the ingrown toenail cellulitis for which I just finished a round of antibiotics). And so it goes.

Unless you have a rare CIP mutation (Cogenital Insensitivity to Pain), you’re familiar with aches. We’ve all experienced the ordinary headache, the run-of-the-mill bruised limb, the annoying paper cut. These “owie-boo-boos” are annoying and ephemeral. Many people experience severe but thankfully brief* pain with childbirth or traumatic events such as broken bones or appendicitis. Yet none of them begin to describe the issues faced by those with chronic pain problems such as arthritis or TMJ, or the re-occurring severe pain of migraines.

We tend to view pain as strictly a physical problem, treated with various analgesics and/or physiotherapies. You hurt, you take treatment, the pain goes away, your wound heals, the event stops. That’s the way it’s supposed to work, and if it doesn’t, then you’re not doing it right. We even have child-birth classes to teach people the “right way” to have pain (yes, I say “people” because their partners are there to learn how to reinforce the appropriate responses during L&D).

But chronic and re-occurring severe pains don’t follow that socio-medical model. Read the rest of this entry »

“Searching, please hold …”

NOTE: BEVERAGE-SPEW WARNING — funny stuff ahead

  • request the pleasure of your company

Why, thank you!

Every day I like to look at the search terms that brought people to my blog. And every day there are several requests for “cat drawing” or some variation thereof, which lands people on my page about prosopagnosia, as does “faceblindness”. Of course, every Web site gets its share of weird search hits. Here are some of mine, including my all-time favourites, which are at the end of the list. (As you might guess from some of these truncated references, the WordPress search-term lister has a character limit.)

Meanwhile, I have:

  • prove you are not a robot

That would be related to the devilish annoyance of CAPTCHA. I hope! Sometimes I think people view search engines as modern versions of crystal balls — a lot of queries are scripted in ways that suggest someone is asking questions of an oracle: Read the rest of this entry »

DISABILITY BLOG CARNIVAL: A Few of Our Favorite Things

 

Description: a photo of part of my desktop, a faux-oak surface with several items lined up along the back edge, (left to right) a clear green plastic desk lamp; a piece of mirror glass on the desk holding the quartet of a green-swirled globe of art glass from Scotland, a faceted crystal, and a small green beaded keepsake tin, and a purple glass tray with green beach glass from the North sea and pieces of granite from Loch Ness; a green glass bottle; several clear green plastic desk accessories including a stapler, tape dispenser, page holder, a tool caddy with green scissors and pens and suchlike, and in front of these is an electric mug-warmer with an old mug bearing the inscription, “SAVE THE EARTH (IT’S THE ONLY PLANET WITH CHOCOLATE)”. The photo has the post title added in the blank area near the top that reads, “A FEW OF OUR FAVORITE THINGS”.

As you may have guessed, shiny or clear green objects are some of my favorite things. This photo doesn’t even show the prismatic green tissue box, photo frame, green fidget-widgits, or Rosie’s habitat with the green lid. Having these things on my desk to use and admire makes me happy. (And that is the mug-warmer I mentioned in my own post on favorite things.)

We all have a number of little things that not only delight us in small ways, but also make life just so much more pleasant, and even help reduce our stress loads. These tend to fall into three categories: technology that enables us to do things, creature comforts, and human interaction. Got your cuppa? Cats and dogs settled down? Then let’s begin! Read the rest of this entry »

Why this Behavioural Observer isn’t a Behaviourist

I’ve spent hours observing and recording the actions and reactions of insects and humans. I’m a behavioural observer, but I don’t consider myself to be a Behaviourist. Despite the usefulness of Behaviourism for training animals (including humans) to perform particular tasks, I find that school of thought to be too limiting for understanding and helping people.

Some years ago when I was taking my MSc in entomology, I studied insect behaviour. One of the professors introduced us to Miller & Strickler’s “rolling fulcrum” model* for how insects respond. Essentially this idea states that there are internal factors (of varying strengths) that affect how much an insect responds to of excitatory or inhibitory stimuli. The example given was that even if you smell something really appetising, if you’re not hungry then you’re not going to eat it. It was presented as something profound, but my internal response was along the lines of, “Duh!” (My external response was to continue doodling triangular pursuit curves on the margins of my lecture notes.)

In other words, Read the rest of this entry »

All in the family

Sometimes after a child gets a diagnosis (or diagnoses) the parents begin to realise many of the same issues from their own childhoods, and on through adulthood. In our family it took the opposite route. It took years to really see the aspie qualities of my kid, partly from unfamiliarity, and partly because in a geeky family like ours … most of those qualities are “normal”. Not until the teen years did the social issues, the APD issues, and ADHD-related educational issues really become unavoidable. The tics went away after several years, as happens sometimes. But I think there was less “denial” as there was unawareness and a sense of internal normalcy: “this is just the way we are”.

A very nice article by Benedict Carey illustrates this: Your Child’s Disorder May Be Yours, Too

Mr. Schwarz, a software developer in Framingham, Mass., found in his son’s diagnosis a new language to understand his own life. His sensitivities when growing up to loud noises and bright light, his own diffidence through school, his parents’ and grandparents’ special intellectual skills — all echoed through his and Jeremy’s behavior, like some ancient rhythm.

His son’s diagnosis, Mr. Schwarz said, “provided a frame in which a whole bunch of seemingly unrelated aspects of my own life growing up fit together for the first time.”

It can alter the present, too, if parent and child have enough common ground. Mr. Schwarz, the software developer in Framingham, said he became in some ways like a translator for his son, who’s now 16.

“I think there are a lot of parents of kids with these diagnoses who have at least a little bit of the traits their kids have,” Mr. Schwarz said. “But because of the stigma this society places on anything associated with disability, they’re inhibited from embracing that part of themselves and fully leveraging it to help their kids.”

Our understanding of diagnoses mean changes over time, and we leave or entirely skip that stage of grieving over not having a promised “normal” child, or possibly even viewing the issues as horrible things that must be cured at all costs. Instead, we find that our children are different rather than damaged, and that we ourselves are oft times different as well. We move from grief to acceptance, and realise that acceptance is not the same thing as resignation.

In fact, we do not have children with broken wings, but we are in many ways flocks of different kinds of birds, not unlike the diversity of finches that Darwin found in the Galápagos, all adapted for slightly different niches. After all, we don’t all need to be penguins attired in identical tuxedos.

Favorite Things

The weather for the past few days has been absolutely dreich, with fog, snow, freezing drizzle, more fog and sleet. Three of us have had migraines this week, possibly related to such. There’s nothing worse than waking up to a migraine with the blinding blue snow-glare piercing one right through the eyes to the brain, or the sleet-magnified echo-chamber effect of having a Boeing jetliner come grinding down the street and then going by again and then OMG going by a third time (jeez, it’s the bloody snow plow scraping off the ice), and let’s not forget crickets that suddenly mature to start chirping (STFU!), and lamp timers that develop annoying rattles (my apologies to recent house guests).

Even worse, the weather’s bad enough to make driving dangerous, but not bad enough to cancel school — teh suckage!

Meanwhile, today I’m snugged down at home, and have just made up some lentil soup (a vegetarian Indian recipe) in the crockery-cooker, so recipe at end of post (apologies to folks down-under who are contemplating summer fare).

But there are the very good parts, including family in town for an early Christmas, and being also blessed with necessities like warm homes, full larders and effective medications. We also have a number of little things that not only delight us in small ways, but even make life just so much more pleasant, and reduce our stress loads. As usual, “you don’t appreciate something until you’ve lost it” so we often don’t realise just how much these mean to us, and how supportive they are, until we’re away from home. Here are some of my faves, which fall into two categories: technology that enables me to do things, and creature comforts.

  • The internet. It’s hard to imagine life without this font of information, fun and community. Howdy to you all out there!
  • My MacBook. Years ago I got my first personal computer with word processing, and haven’t looked back. I store my music on it, create PowerPoints to show pictures and illustrate methods in my gardening classes, keep track of my calendar, use it to download and modify and print pictures, play games, and of course, write and store all sorts of documents.
  • To take all those fun pix I have my digital SLR. No more 35 mm film to load and get developed or slides to scan! I can shoot over 600 photos before downloading, which means plenty of shots to get just the Right One, and I can play around with interesting angles.
  • My New Beetle beeps to let me know I’m low on fuel, and furthermore, will beep again the next time I start up the engine to remind me that now I really need to fill the gas/petrol tank. It also has heated seats which sounded like a ridiculous frill until the first winter, and then I realised that I could get myself warmed up by the end of the first kilometer of driving, rather than by the time I’d reached my destination.
  • My microwave that gives me a reminder beep a minute later, when I’ve forgotten something in there after the finish beep. This is fabulous for the AD/HD brain! Sometimes it takes that second reminder beep to penetrate past the hyperfocus to alert my consciousness.
  • And since I have that extra small microwave from when I had a second home in my campus apartment, I now keep it in my bedroom where it’s invaluable for also warming up my Rice Sock. The rice sock is simply a tube sock filled with 1 lb (1/2 kg) of dry rice, and knotted shut. I warm it up for a minute or two in the microwave, and then drape it where-ever I’m cold, stiff or sore. Unlike an electric heating pad, it eventually cools down, so there’s no risk of burns, and it conforms to my body much more nicely. It’s even nice in the summer, when I keep it in the freezer to cool down by draping it over my neck or forehead. Any time of year it’s great for draping across my eyes to shut out the light. Everyone needs a rice sock!
  • Shearling slippers for the chronically cold feet; thankfully these things “wear like iron” (last a long, long time) as I wear them around the house for all but the barefoot months of the year.
  • My mug warmer, a small electric hot plate that keeps my coffee or tea Just Right for however so long.
  • Old, soft 100% cotton pillowcases, ironed blissfully smooth (bonus if the bed linens were dried on a clothes line and smell like sunshine). Cotton also feels cooler in the summer time.

“A few of my favourite things” is the theme for the next Disability Blog Carnival, being held right here on the 13th. You can submit one of your blog posts by using this page, or posting a link in the comments section here (if you can, please send in links by Today-Monday or Tuesday). More links to Disability Blog Carnivals can be found where Penny L. Richards has posted them on this page of the Disability Studies, Temple U blog. They’re great reading!

Here’s that soup recipe, for some chow to go with all that reading:

MYSORE RASAM

2 tablespoons melted butter
3/4 teaspoon black mustard seeds
1 cup yellow lentils (toovar dal)
1 teaspoon turmeric
15 ounce/ 400 g. tin tomato sauce
1 tablespoon ground coriander
1 teaspoon ground cumin
1/4 teaspoon ground red chillies
1 teaspoon salt

Sauté the mustard seeds in the butter. Add to the lentils and spices, plus 4 cups water and simmer for 35 minutes, until the lentils are tender. (Or cook in crockery-cooker for several hours.) Mash or puree the lentils, and simmer 15 minutes more. Soup may be strained for a consommé.

Oh no, here we go again …

A recent report claims that autistic children improve when they have a fever:

Fevers could actually improve autistic behavior in children, new research suggests, hinting at the possibility of a biological cause behind the disorder that has proved so difficult for experts to understand.

Researchers from the Kennedy Krieger Institute in Baltimore report that autistic children who are sick are less likely to make repetitive movements, use less inappropriate speech and are not as hyperactive as they normally behave.

Shocking news, that — feverish children are less hyperactive. Feverish children are just less active in most ways, because they feel crappy!

You can just see it coming on the horizon — more junk “biomedical treatments” to “cure” autism. Snake-oil salesmen will be sticking kids in saunas and trying to induce fevers or whatnot. Nevermind the disclaimer way near the bottom of the article:

In the meantime, however, experts warn that parents should not induce fever in their children or withhold medical treatment to replicate the reported improvements in behavior.

:: sigh ::

Just Bugging You

Circus of the Spineless #27 is going on over at The Hawk Owl’s Nest! Patrick got all hexalogistic and limited himself to describing each post in only six words, which is quite a neat trick.

Comfort Time

Today’s post includes a recipe. It’s a really quick recipe, “quick” in the real-world sense, not quick in the warped cookery-book sense that means standing at the stove for 45 minutes. It’s also from scratch, so you can adapt it as necessary to fit your own dietary requirements. The ingredients are common pantry things, too.

On days like this, I need comfort food. It’s a long day at work, as working with 28 students who have emotional & behavioural issues can be. I’m tired of the temper tantrums (teenagers being like toddlers with hormones), and hearing the “F-bomb” tossed about. I’m especially tired of a trio of acting-out 8th-graders who collectively are the BD equivalent of acid+base+catalyst. Two of the teachers/staff are off sick, which means that they’re death-warmed-over sick, unlike several of the present teachers/staff members who are among the walking sick. I’m in the second category, and get to spend all morning crunching spreadsheet data, which given the way the students have been, was something of a blessing despite the fact that number-crunching is hardly my fave activity. The teacher has a substitute (of sorts), but of course there are no subs for paras, so we’re short-handed.

I have the intense desire to go crawl into a hot bath after work, but get home and discover that my son has beat me to it, having spent yesterday at home sick and then dragged through a school day. So I get a snack and find that somehow we’re missing a couple gallons of milk that I’d bought at the grocery two days ago. Cuss. I go out to the garage and find them still in the trunk/boot of my car, where we’d missed unloading them. Eeuw … gingerly set the two warm jugs of milk into the rubbish bin. Go back in the house and then my sock squishes into a puddle of cat-gack that one of them barfed up. Everybody has things that absolutely cannot stand; I can deal with blood and gore just fine, but wet socks absolutely gross me out. This pair of socks has one heel that’s getting threadbare, so I simply toss them into the rubbish as well. I clean up remains of cat-gack that my foot missed.

Retrieving the cleaning-up materials from the kitchen yields the discovery that for some unfathomable reason, one of the cats barfed onto a stovetop burner. I’ve no idea why any of them would be up on the counters, and querying the quartet of felines produces nothing but blank stares, Hear no evil, See no evil, Speak no evil, Eat no evil. As if! Someone was gnawing on the spider plant! (Chlorophytum comosum ‘Variegatum’). I go fetch my slippers for my cold feet, and then start dismantling the stove-top for cleaning.

Days like this call for comfort food — quick and easy comfort food, the sort you can eat with a bowl and spoon. I pull out a bag of spiral pasta and a couple tins from the pantry. I zapped some Romano green beans in the microwave for a side dish because we had some in the freezer.

PASTA PARMA ROSA

Some shreds of Parma ham would be fabulous in this sauce, but who has that just sitting around? But even without it’s still tasty. Quantities are rough guides; use what you have. Depending upon your ability to multi-task, this takes about 15-20 minutes to make.  Chunky pasta shapes work better than slippery spaghetti.

  1. Start a pot of water to boil for the pasta.
  2. If you have some on hand, mince half a small onion and a couple cloves of garlic. If not, dig around and find a couple tablespoons of dried onion flakes and/or 1/4 teaspoon garlic powder.
  3. Open a 14-ounce / 400 gram tin of chopped tomatoes, and set them to draining. Or, dice a couple-three fresh tomatoes.
  4. Open a tin of condensed milk, or measure out 2 cups half-and-half / half a liter of single cream (or dairy substitute).
  5. When the water is boiling, start pasta to cooking; don’t forget to set the timer!
  6. Cook the onions, garlic and tomatoes in 2 tablespoons of olive oil or butter, on medium heat. If using dried, add them at this stage so they will rehydrate in the tomato juice.
  7. Give the pasta a stir so it doesn’t cook into a big noodleblob.
  8. When the tomato mixture no longer looks very juicy, stir in a couple tablespoons of flour. Add a sprinkle of pepper (white pepper if on hand) and half teaspoon of salt or to taste. Pour in the milk. Turn heat down so the sauce doesn’t scorch.
  9. Stir pasta again. Turn strainer upside-down and whack it inside the sink if the bits of tomato stuck to it offend you. Rummage around and find a big serving bowl and spoon.
  10. Toss in a handful (about 1/4 cup if you’re a measuring person) of shredded Parmesan cheese into the sauce, and a handful of minced ham if there’s some around. I have also substituted a slice of bacon to great success — scissors make dicing the bacon much easier. Substitute half-cooked bacon for the oil at the beginning, and sauté the onions et cetera in the bacon fat.
  11. Drain pasta when done cooking. Dump the pasta into the serving bowl, pour sauce over it, and put the rest of the Parmesan on the table for adding atop individual servings.
  12. Nest the cookpots in the sink, tossing in the cooking spoons, along with a squirt of dish soap/ washing-up liquid, so the sauce doesn’t harden while you’re eating.

Go eat your food while it’s still hot!

Absolute Nonsense

Over in England, Mary is working to get her son assessed for ADHD, Tourette’s Syndrome and Asperger’s. I would think that the TS would be a fairly easy diagnosis for their specialist to make, especially if various people at home and school have documented lists of various motor & vocal tics. The ADHD diagnosis can sometimes be trickier, if only because the more noticeable tics tend to overshadow things, but given the frequency with which these syndromes are co-occurring (I hate the term “comorbid”), no one should be surprised. Likewise, AS also tends to come in these “package deals”.

But the reason I mention all this is to comment about one of the aspects of the interview process that she mentioned:

They did not think, for various reasons, that he has Asperger’s, mainly because he is highly creative and also has a sense of humour (doesn’t take everything literally as most asperger people do).

Boy, talk about literal-mindedness! There’s nothing like absolutes to mess up diagnostics. When people start throwing around concepts like “always” and “never”, I get the impression that their experiences with different students (or clients, or adults, or children) is limited to memorising narrow diagnostic criteria and the obligatory (brief) psych rotation during training, rather than with numbers of rather diverse, real people.

Asperger’s or autistic kids do not:

  • always take things literally;
  • never have a sense of humor;
  • always have flat affect;
  • never make eye contact;
  • always drone on incessantly about their special interests;
  • never have friends;
  • are always computer or math whizzes;
  • always demonstrate stereotypical flapping, rocking, or stimming;
  • or lack imagination — as the man himself said:

“It seems that for success in science and art, a dash of autism is essential.”
~Hans Asperger

After all, everything is relative — we’re comparing how the person is compared relative to their peers. Likewise, if the family has members with TS, AD/HD, AS or any other co-occurring conditions, well, it shouldn’t be too hard a diagnostic stretch to consider that the person of enquiry may well have similar issues!

As a pal of mine used to jest, “There are absolutely no absolutes.”

The Fine Art of Fidgeting

Most people think of children with Attention Deficit HYPERACTIVITY Disorder as being kids who bounce off the walls, sometimes literally so. Several years ago, there was some debate as to whether or not our kid had ADHD. All of the disorganised, inattentive, losing-things, forgetting-things details were there, as well as the bedroom floor that was invisible from clutter. Certainly the kid couldn’t sit through dinner without hopping up from the chair several times. But in school the kid behaved somewhat differently (as children often do), and remained appropriately seated. Because the kid is also rather reticent, there wasn’t the frequent class interruptions that one gets with the talkative sort of ADHD student.

The kid is now 16, and not surprisingly, has matured as well as gotten older. Years of developing support systems at home have paid off in some areas; Read the rest of this entry »

Trials and tribulations of take-out

Imagine that you spend your day in an office cubicle. And you know that sometime, likely after you’ve been hungry for a while and wondering where that distracted secretary has got to, you will eventually get that take-away meal you were promised. It’s never on time and they always get the same thing, but there’s always plenty to eat, with leftovers to nosh on the next couple of days.

So there you are, peacefully focused on business, when alla-sudden you are bombarded by a dozen sack lunches raining down on you and your cubicle!

That’s what happened to Rosie. Again.

As soon as I popped open the access-hatch on the top of her habitat, she scuttled hurridly over to a side wall and clung from an upper corner. I don’t think it anthropormorphising too much to say that she was alarmed, for I was hurridly dropping in over a dozen large crickets, along with their block of artificial diet and packaging. Then my giant hand scrabbled around inside to retrieve the piece of cardboard egg carton and shake off the crickets still clinging to it. That bit of packaging gives them something to hang on to during shipping and handling, but it would simply clutter up Rosie’s room.

Escapees are always a possibility, and annoying to both capture and return, so I hurridly snapped the access-hatch shut. The crickets are discombobulated from being dumped out of their shipping container and bouncing around everywhere, with a couple of them landing in the white sake cup that is her water dish. Only after the hatch has been shut and the crickets settled down does Rosie go to check out the latest “manna from heaven”.

It’s not easy being a pet-store cricket — they go from a life that revolves around food and (once matured) around sex, to being dumped someplace strange with a predator. As things stand right now, the block of artificial diet has tumbled to one end of the habitat, and the rock the crickets are hanging on is at the other end. Rosie snags a few nearby crickets, tip-toes around her habitat to see if there are any other changes (photo), and then retires to digest by parking in her little flowerpot.

I realise that I need to find a better way of transferring the crickets, as the whole process seems alarming to all the arthropods involved, and is nerve-wracking for me as well due to the risk of escapees.

For the arachnophobic, I put the picture “below the fold”.

Read the rest of this entry »

Stolen Moments

This old poem of mine is posted for Whitterer and all the other mums and dads out there.

STOLEN MOMENTS

The last bowl of cereal —
the children will want some too,
if they see you eating it.

The latest edition
of the science magazine
while going potty.

The “Travel” section
of the newspaper
at the dentist’s waiting.

Counting the seedlings
under the basement lights
while shuffling laundry.

Watching finches feeding
outside the window
washing the dishes.

Writing a letter
to the distant friend
before everyone else awakes.

Sorting color blocks
with the youngest
while the eldest is at Kindergarten.

Discussing the eldest’s latest theory
of dinosaur extinction
while the youngest naps.

Hugging hubby
before the baby loses a pacifier*
and the eldest needs teeth brushed.

… enscribing this poem
between a nap
and making lunch.

* pacifier = binky, dummy