Distress Data Diary

7 February 2010 at 22:30 (Arthritis, Doctors, Food, Hyperacussis, Hypermobility, Ménière's disease, Migraine, Pain, Proprioception)

Dear Diary,

Wait a minute, this is a migraine diary; useful and important, but not such a “dear” topic.

Dear Diary,

Today I had another migraine.  The symptoms included:

As mentioned, I’m putting together a diary of migraine details for an upcoming appointment with a specialist. The other week I had one so bad that my son had to take me to my GP for a Toradol injection, to be taken with a fresh dose of Imitrex — “fresh” in both meanings, because earlier I had taken my last and slightly-expired pill.  I’d planned on asking the pharmacist to order a refill, but of course, had been unable to go into work at the grocery!  (The irony.)

“Have you made an appointment with a neurologist?” asked my doc.

“Headache speshlist; don’ remember whom.”  I held my wallet in front of my nose and squinched one eye open a millimeter to pull out the correct business card.

“Oh good, that’s just the person I wanted you to see.  Takes forever to get an appointment, though.”

“In April,” I mumbled.

“Yeup; takes forever.  Okay, I’ll have the nurse come in with the injection, and I’m writing you a ‘script for some more Imitrex.”

” ‘Ank-you.”

When I do get to see this new specialist, I want to be armed with a good data set so we can maximise the efficacy of our first appointment.  But to do that, I had to figure out what kinds of data would be needed.  This in turn meant researching the various types of headaches, migraines, and symptoms.  I got to learn lots of great new words!

If the headache is bilateral (both sides of the head), then it’s a regular tension-type headache.  I’ve had some intractable ones that linger for a couple-three days, despite various medications.

Unilateral headaches (just one side of the head) are the migraine sort.

There are the icepick migraines that feel like someone just stabbed you in the head.  Although intense, they are mercifully brief — just a minute, though there can be several repeats throughout the day.

Migraines can be temporally divided into three stages:  the prodrome or early-warning symptoms, the migraine itself, and the postdromal after-effects.  If I wake up with a migraine, then I don’t have the benefit of prodromal symptoms to alert me to take some medication and stave off the worst effects.  However, one of the benefits to keeping data sheets is the ability to suss out what sorts of symptoms are prodromal, so I can have better self-awareness.

A persistent tension headache can turn into a migraine (ugh).  Eating much wheat also seems to be a trigger for me; a small cooky isn’t bad, but a couple slices of pizza will do me in later (not to mention digestive hoo-hahs as the gluten works through my kishkas).  Barometric pressure drops — especially those that bounce back up from a swiftly-passing storm — are notorious for making my ears and head hurt.

The cognitive and mood factors can be less obviously related to migraine prodrome: brain fog, depressive state, insomnia, or light sensitivity.  You might think these would be pretty obvious, but the problem with chronic pain (from hypermobility+osteoarthritis+TMJ, especially combined with 11-13 hour work days) is that one gets into those viscous circles of pain-sleep problems-depressive states.  Throw in everyday hyperacussis and UV-sensitivity, and sometimes it’s hard to sort out what is which.  “Ain’t we got fun.”

Once I started researching various migraine symptoms, I had a much better means of both identifying and describing the various symptoms I experience.

One thing that quickly became apparent was that like snowflakes, no two migraines were precisely the same.  This is interesting from an objective point of view, but it also means that I have to spend a bit of effort to verbally identify the symptoms I experience during each migraine, and then shortly thereafter note them.  Although a cognitive task that I cannot always perform throughout the entirety of the experience, it does afford me the opportunity to detach part of my consciousness to that objective state, which gives me one step of remove from the intensity of the experience.  (My research background is useful in so many ways.)

An Aura can include visual disturbances such as:
Scintillating scotoma the classic flickering/shimmering/sparkling arc, zig-zag or castle crenelation effect;
Drifting phosphenes phosphenes are “stars” you see if you stand up too quickly or sneeze; phosphenes can also refer to the geometric patterns that happen when you press on your closed eyes;
Diplopia just the fancy word for double vision;
Oscillopsia when objects appear to oscillate, vibrate or bounce;
Photophobia “the light, augh! too bright!”
Allodynia pain from nothing in particular, or something that wouldn’t normally cause pain, “augh the sheet’s touching my arm!”;
Osmophobia “the smells, augh! too overpowering!”
Olfactory hallucinations smelling things that aren’t really there;
Phonophobia when even the clattering of dust particles falling is too loud;
Hyperacussis I startle overmuch at sudden or sharp noises — well, even more so than usual;
Auditory hallucinations hearing things that aren’t there, nor are related to my tinnitus;
Synæsthesia Feeling sounds, and other odd cross-sensory effects;
Paresthesias tingling or numb feeling like “pins and needles”, or like someone is yanking on my kneecaps or tendons;
Vertigo, nausea, vomiting, chills or clamminess;
Ataxia a “lack of order” or bad muscle coordination;
Disarthria / aphasia disarthria is trouble speaking clearly, and aphasia is problems with speaking and understanding, or making sense of reading things.

Once all that is over, there is the postdrome, or “migraine hangover”. I’ve no idea how one compares to a drinking hangover — I’ve never drunk that much! But it is something like having the flu: weakness, generalized muscle aches, laterality confusion (right v left), fine-motor difficulties, exhaustion, lack of appetite, intense thirst, intermittent strabismus (wandering eye), temporary dyslexia / reading comprehension, auditory processing lags, concentration problems, or once in a while, feeling energetic — “wow, I’m no longer in pain!”

Then of course, the was the issue of creating a useful data sheet, one that was both complete and easily used — and this is where my dual backgrounds in behavioral research and typography+layout blend well.

As with any sort of biological data, it is important to note the frequency, intensity and duration.  In addition to those classic factors, there are also the sorts of factors that one more often considers in ecology: the type, season (if any – only a data set of more than a year can determine that), and the extent, in this case, the extent of the disability that results from migraines.

I’m sorted the pain and disablement into three levels:
1 annoying pain, workable
2 moderate pain, reduced work
3 severe pain, incapacitating.

With the diary, I can then sort out the frequency, intensity and duration of the issues. So far I’m relizing that it’s much more of a problem than I had realized. It’s not so much that one gets used to pain, but that one gets used to being in pain, to headaches as a way of life.

Damn, but April’s a long ways off.

8 Comments

We Mutants

5 September 2009 at 23:54 (Arthritis, Diversity, Hyperacussis, Hypermobility, Prosopagnosia)

“Now remember — you’re special, just like everyone else!”

It seems that classic punch line (for all the jokes on useless self-esteem boosters) was never truer.  At the ever-entertaining NeuroLogica Blog, Steven Novella explains recent findings that everyone is a mutant.

Given my numerous neurological quirks, I had long assumed my mutant status to be true, and when finally diagnosed with prosopagnosia (which can result from a single point mutation), I then took it to be a given.

As Novella, points out, not all mutations give one super-powers; in fact, most of mutations are neither beneficial nor detrimental.  There’s certainly nothing exciting about hyperacussis, as I’d previously described in Can you sue your Fairy Godmother for malpractice? Some things like the are just annoying; were I graceful, the hypermobility might have enabled me to be a dancer or gymnast.  Instead, I’m just arthritic and bruised, for all it’s handy to always be able to reach that itchy spot.

100 – 200 mutations per person may be trivial in the genomic sense, but is far from trivial when considering human diversity.  Mutation is normal.  It’s ubiquitous.  Not only are there no “perfectly average” people, but we’re all mutants.  Now, can we finally lay disablism, transphobia, and the rest of the xenophobic rot to rest?

Now ‘scuse me while I go for a soak in the tub; maybe I can distract meself from this silly jingle that’s gotten stuck in my head:

I’m a mutant, you’re a mutant, xe’s a mutant, too.

We’re all alike in our differences, so whatcha gonna do?

5 Comments

The long and short of it

11 June 2009 at 15:40 (Auditory Processing Disorder, Autism/Asperger's, Hyperacussis, OMG, Pain, Sleep, Teaching/Tutoring, Tinnitus, Tourette's / tics)

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]

1 Comment

That joist isn’t funny

19 April 2009 at 18:49 (Humor/ Fun Stuff, Hyperacussis, Pain)

squeeee-squeeey-squeeeeee

The bathroom to the master bedroom is above the kitchen, and when someone is (dressing? brushing their teeth? pacing?) at a particular spot, the floor squeaks abominably, like two pieces of Styrofoam [polystyrene] being scraped together.  (Were this a ground level floor, we could go to the basement to hammer in some splints in the joists.  But of course there’s a ceiling in the way, so we’re stuck and I just have to cope.)

squeeee-squeeey-skwor-skwork-squeeey

There are some noises that make me flinch, jump out of my seat, and/or send me packing from the room.  Not just the typical squeaky things, like the proverbial (and literal) fingernails-on-the-blackboard, but also fire alarms, theatre movies, teakettle whistles, the shattering of dropped water glasses, chainsaws and leaf-blowers and string-trimmers and hedge clippers and table saws and wood chippers and …  Okay, lots of people dislike those noises, but during the quarterly fire drills only another staff member and I are plugging our ears in distress as we herd the students outside.

Then there are the more mundane noises that no one expects anyone to mind: the sour whine of computer hard drives going bad, the strident jangling of class bells echoing down tiled hallways, the cavernous reverberation and intense whirring of elevators,  “merely” stacking pots and pans and shutting the stove drawer where they’re kept, the clanking when stacking ceramic casseroles in the cabinet, or the grating squeal of the pressure-hinge when opening and shutting an aluminum storm door.  (WD-40 is my friend, and periodically I go around the house and spray every room and cabinet door hinge before I “come unhinged”.)

Even my apartment neighbors thought me overly “picky” because I asked them if they could be quieter when washing dishes or taking a shower or walking about in boots or high heels.  Even everyday noises like vacuuming or their sputtering coffeemaker and beeping microwaves or their tinny radio and yakkity telly programs would drive me ’round the twist.

Sometimes it’s neither the suddenness nor the loudness nor the high pitch of the noise, but the combined effects of all the daily noises, the “life in surround-sound” as described in “Bridge Load Limit”.  As I’ve described before, hyperacussis is a “super-power” that truly, truly sucks, even when you don’t have a profoundly debilitating case.

I’m with Karl !

LOLcat Karl makes an anguished face as another cat asks, "They say itz a sound only we can hear. IDK. I don't hear anything Karl. Do u?"

1 Comment

Requesting your thoughts, please

7 February 2009 at 18:15 (Arthritis, Auditory Processing Disorder, Autism/Asperger's, Coping strategies, Doctors, Epidemiology, Hyperacussis, Hypermobility, Menopause, Migraine, Pain, Proprioception, Tinnitus, TMJ (Temporomandibular Joint Disorder), Tourette's / tics)

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 »

22 Comments

Backwards Symphonies

16 August 2008 at 1:57 (ADD/ADHD, Arthritis, College/University, Home stuff, Hyperacussis, Migraine, OMG, Pain, Sleep, Special Education, Stress, Teaching/Tutoring, Tinnitus, Uncategorized)
Tags:

“It’s been a long week — I bet you’re ready to decompose.”

I stared at my husband, blinking through the mental fog of too-many-jobs-not-enough-sleep.

“I’m not ready for the compost pile yet,” I replied, trying to figure out what his latest malapropism was meant to be.

“Or whatever the term is,” he added.

My brain finally catches up. “Decompress,” I answered.

What an incredibly long week.  I can’t remember the last time I had one like this, and in my over-busy world that’s saying something.

Wednesday last week I had a pneumonia vaccination, which left my arm so sore I couldn’t take off my jogbra without assistance, nor even get my hand up to head level until the weekend.  Moreover, Read the rest of this entry »

2 Comments

Buzz Off!

5 April 2008 at 6:50 (Attribution Errors, Behaviour management, Hyperacussis, Injustice, Rants)

No, “buzz off” does not mean that I am being grumpy and telling everyone to Go Away. There are apparently a lot of other people out there who are grumpy about Mosquitos, but not the insect kind. The story (like most) gets complex very fast.

So. There are some young people who hang out in front of shops or public areas and are annoying, even to the point of committing misdemeanors. This is hardly a new problem of urban settings; doubtless ancient Greek and Roman shopkeepers complained about much the same thing. In addition to the primary problems of what the yobbos / chavs / hooligans (pick your fave term) may engage in, there’s the secondary problem of their presence intimidating customers and driving away trade.

Of course, not all young people act like this. In fact, very, very few do. And young people, like people of other age groups, like to get together with their pals and socialise. Of course, when you’re young you don’t have your own place, and not everyone wants to hang around the living room where dad’s watching Top Gear or yet another history programme about some war or another. So kids hang around in parks, on sidewalks, in malls, and other public areas. And then people complain because shockingly, there are kids hanging around. Well, duh; few can afford to spend lots of cash at movie theatres or pool halls or video game parlors, and if you’re not spending, they don’t want you there.

Back in 2005, Howard Stapleton realised that he could use teens’ better hearing against them. In theory, young people can hear up to 20 kHz (20,000 Hertz), but as people age they lose this ability due to presbycusis. Although most older adults can pass a basic hearing exam with flying colors, such exams only test up to 8,000 Hz, because audiologists are concerned with how well people perceive common speech and environmental sounds. (This concept also assumes that those targeted have not had any hearing loss due to listening to loud music in vehicles, headphones, and / or concerts.) Thus, the Mosquito device was born.

According to a distributor’s description, these speakers broadcast a 17.5-18.5 kHz tone at 75 decibels. Although not damaging, the whine becomes very annoying after a couple of minutes, and those who can hear it usually leave after a few minutes, although the unit runs for 20 minutes before shutting off. It can be heard 15 meters / 50 feet away, with stronger models audible as far as 90 meters / 300 feet away.

The Mosquito device proved popular with a number of shopkeepers and other business owners; some 3500 units have been installed around the UK, to prevent young people from congregating outside of stores, rail stations, car parks, industrial areas, city parks, and even school grounds (used after hours). Now it’s being sold in the U.S. and Canada as well.

Naturally, there were protests about the use of the devices. The prototype was banned in its place of inception, Newport, South Wales. Although legal elsewhere, other groups have taken up complaint, and not just young people:

Scotland’s Commissioner for Children and Young People, Children in Scotland, and the Scottish Youth Parliament fully support the campaign launched today in England against the use of the Mosquito device.

So too is Liberty, the National Youth Agency, the Children’s Commissioner for England, which is spearheading the Buzz Off campaign.

Frankly, I find the whole idea of using sonic deterrents as weapons (attack devices) against young people to be abhorrent. These things target and punish all young people present for the actions of a few. You get what you give, so how is being deliberately obnoxious supposed to encourage better social behavior in others? We don’t like it when people go around playing their music too loud, so why is it okay to broadcast high-pitched whines that are meant to get on people’s nerves?

Furthermore, the manufacturers and users assume that only young people can hear these sounds, and that simply isn’t true. I’m 47 and I can hear such frequencies (despite the tinnitus), and a 75 kHz noise is also pretty damn loud, even if it’s not technically at the damaging threshold. If I came across a shop that was using this sonic attack, the shopkeeper would certainly get an earful from me! There’s too much noise as it is, without adding gratuitous noise.

It’s not that I don’t sympathise with business owners and other citizens who are dealing with the effects of antisocial or criminal behavior. But this kind of antisocial retaliation hurts everyone, and is blatant discrimination.

10 Comments

Leaks

6 March 2008 at 4:38 (Humor/ Fun Stuff, Hyperacussis, Insects & Arachnids)

Last ngiht I had an absolutely BRILL idea for a blog post. Even came up with a catchy title. Thought it would be a good way to remember it. Didn’t write it down, owing to having finally warmed up my spot on the bed and it being past midnight, so I didn’t want to climb out of bed and grope around in the cold and dark for writing materials.

And, then of course the next morning I couldn’t remember it. Still by evening I can’t remember it. The idea seems to have leaked out my ears during the night. So it goes. Maybe it’ll come back to me — this time, I’ve a pencil and paper at bedside.

Meanwhile, here’s a lovely little Minuscule vid that I’d not seen before. It’s part of an animation series done in France, short little stories with natural scenery and computer-modeled invertebrates (insects, spiders and snails). The funny stories have no dialog, just some light background music and humorous sound effects. (No captions needed.) The physics are just spot-on, too, with only slight exaggerations for effect.

This one has a fuzzy black house spider that has taken up residence in the kitchen of a country house. Alas, the sink drips, drips, drips. The sound clips we get from the spider’s perspective sound horribly loud … maybe it has hyperacussis.

Anyway, enjoy the story as our protagonist seeks to create some “Silence”:

10 Comments

Fishing With the Wrong bAIT

9 February 2008 at 23:43 (ADD/ADHD, Auditory Processing Disorder, Autism/Asperger's, Hyperacussis, Tinnitus)

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 »

9 Comments

ALDs in the Classroom

13 January 2008 at 4:55 (ADD/ADHD, Auditory Processing Disorder, Hyperacussis, Teaching/Tutoring)

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.

3 Comments

A Most Dangerous Question

6 September 2007 at 11:14 (Autism/Asperger's, College/University, Coping strategies, Counseling, Hyperacussis, Stress, Tinnitus)

Once Upon A Time…

I had a great counsellor. That sort that gives you unconditional positive regard, and listens to what you’re actually saying (instead of what they’re expecting), and who also asked especially good questions. Some of the questions were of the Zen-master category of counselling, the sort that jog you from your everyday running, smacking palm to forehead and saying, “OH!” or else stopped you short because you had been doing something totally irrational and then had it pointed out to you when you were at a point to heed such. Other questions were more like planting little seeds, things that seemed innocuous at first but that later proved to be much greater things.

This is the story of the little seed question. It was a very dangerous question, not in the hazardous sense, but in the transformational sense. Read the rest of this entry »

4 Comments

Things that bug me

16 August 2007 at 3:55 (Arthritis, Hyperacussis, inertia, Insects & Arachnids, Rants, Tinnitus)

No cheese with this whine, please; I’m out of crackers. It’s HOT — we went from 24°C/75°F weather in the mountains to 40°C/104°F weather back home. It’s humid, too. Weeds grew outrageously in my absence, but I’ve no energy for tackling them when I get home from work. Nor do I have any energy to cook dinner, and no one has any ideas on what they want to eat, either. I need to buy groceries, but don’t know what to get beyond the inevitable milk & toilet paper. The heat saps our appetites. The heat has melted all of my blogging ideas from my brain, and staring at the snippits in my drafts folder doesn’t jog anything.

Boy starts classes tomorrow, and at my school, the students return. I have no idea why it is that Read the rest of this entry »

4 Comments

Can you sue your fairy godmother for malpractice?

27 July 2007 at 6:30 (Arthritis, Geeks, Hyperacussis, Rants)

I always thought it would be cool to have a superpower. You know, be able to fly, be invisible, walk through walls, be utterly graceful … impossible things like those.

Turns out I have a bit of a superpower after all. Took me long enough to figure that out, though. As a child, I figured it would be pretty damn obvious to me that I could do something that other people couldn’t, right? Well, it would be if I could fly or turn invisible. Those things are apparent, so to speak.

Instead, I find that I can hear all kinds of obnoxious noises that most people cannot hear. The hell of it is, it’s a lousy superpower. Read the rest of this entry »

10 Comments

Bridge Load Limit

16 July 2007 at 1:16 (Attribution Errors, Autism/Asperger's, Coping strategies, Hyperacussis, Meltdowns / Shut-downs, Stress)

“I try to take one day at a time, but sometimes several days attack me at once.”
~Jennifer Unlimited

PART THE FIRST: THRESHOLDS AS VARIABLE MAXIMA

Sometimes it’s hard to explain why things get overwhelming, or why something I could tolerate just find one day becomes overwhelming on another day. I look “normal”. I earned university degrees, hold jobs, have a family, converse like an intelligent person … and then I’m standing there dumbly like a deer in the headlights, or am staggering down the hallway flapping a hand, or am seated away from others and rocking in agitation. I’ve turned into a “not-normal” person, and transgressed that invisible boundary marking staff from students / clients, or have shifted from upstanding citizen to crazy-looking person on the street.

Amanda wrote a pithy blogpost on 6th May, 2006, making the excellent point that what constitutes a sensory overload threshold for one (autistic) person may be quite different for another. This is relevant to all sorts of types of inner and outer functioning; as she points out, Read the rest of this entry »

12 Comments

Oops. Ouch.

27 May 2007 at 19:52 (ADD/ADHD, Arthritis, Coping strategies, Hyperacussis, Hypermobility, Insects & Arachnids, Migraine, Proprioception, Tinnitus, TMJ (Temporomandibular Joint Disorder), Tourette's / tics)

Here’s one of those quandaries: Which is worse, accidenting one’s self frequently, or not responding well to anæsthetic?

It’s not that I react badly to local/topical anæsthetic, just that I don’t react to it much at all. But I’m getting ahead of myself. Which is not unusual because I’m often unsure of where I am in space.

Being chronically uncoördinated is technically known Read the rest of this entry »

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Who Owns It?

28 March 2007 at 5:03 (Attribution Errors, Autism/Asperger's, Behaviour management, Hyperacussis, Meltdowns / Shut-downs, Parenting, Prosopagnosia, Teaching/Tutoring)

“It’s not about YOU,” I explained, although I had that dreaded sinking sensation that although the words flowed by her ears and pinballed through the processing areas of her brain, that although she was hearing and listening and understanding the verbiage, the other staff member was also not really understanding what the hell I meant. Meanwhile, the children around us were bouncing around in various levels of happiness, impulsiveness, mild disobedience, and general obliviousness to rules. As long as no one was getting hurt, the minor details of behaviour didn’t matter; this was yet another day at the city pool, in a long line of such overly-hot summer days at the city pool.

“It’s not about what you’re doing,” I tried in vain to rephrase, although my efforts were getting to be pretty lame by this time in the afternoon, what with the combination of summer heat, the impact of children’s high-decibel noise aggravated by hyperacussis, and the strain of trying to track a dozen children despite mild faceblindness. “I mean, how you handle it does matter, but …” I stared into the distance, as one of our charges was wandering around with her bathing suit bottom halfway up one buttock. I kept track of our children by remembering what bathing suits they were wearing, so I was predisposed to notice such. “But it’s not about you.” I finished, flapping my hands a bit in agitation as those words were still in my verbal buffer, but I was instead needing to formulate some kind of sentence directed to another staff member closer to our wayward girl.

“Oh, he’s just being defiant, and I’m not going to let him,” she replied in the self-assured manner of the barely-twenty-something, and left me to go refill her cup of iced cola. I heaved a big sigh at the idea of “letting” someone be defiant, and went to intercept one of our autistic boys so he wouldn’t toss bits of paper into an air conditioner fan.

There are some children who are just explosive in temperament, for any number of reasons. Handling such children is always tricky, because it’s all to easy to get sucked into the whole situation and end up aggravating the dynamic instead of damping it.

Some children get angry because they are being defiant, and are pushing you into a power struggle. We’re familiar with how this works with toddlers who return instruction with a, “NO!” The best approach for such is to give them choices that are acceptable to you – the toddler feels they now have some measure of immediate control over their life, and yet you are still in ultimate control by being able to select options that are appropriate. Teenagers are sometimes like toddlers-with-hormones, and frequently benefit from similar tactics. In any regard, you shouldn’t respond to the power struggle, but rather respond to the situation and help the child understand the options they have available to them, and how to anticipate the results of their choices. (Sometimes I hate to use the word “consequences” because it has gotten so laden with meaning punishments.)

This particular staff member was predictably playing into the power struggle, and was determined that she was going to “win” by proving something or another to the child. However, this child wasn’t really being defiant in the volitional sense. The defiance wasn’t premeditated or consciously malicious. This was just one of those children who didn’t have sufficiently well-developed mental “brakes” to be self-aware, anticipate things, and stop himself before he reacted to situations. Such children frequently have low frustration levels, which are also a result of this kind of dysfunction.

The issue here was many-fold. For one thing, the staff member was reacting to the effects of the problem (the blow-ups) instead of the cause of the problem (the child’s processing dysfunction, plus the ongoing presence of situations that fed into the blow-ups). For another thing, the staff member believed that she had a lot more ownership of the solution to the problem than she did. She probably also likely believed that the child had a lot more ownership of the cause of the problem than he did. But although the child rarely meant to get so upset or angry, he still had to have some responsibility for what he did, otherwise he would end up reneging on most of his personal responsibility and go from being a child with a problem to being a brat with a problem.

It’s one of those weird little subconscious glitches in our brains that leads us to make fundamental attribution errors – our own lapses are caused by environmental reasons (“I of course couldn’t help but be incoherent as the heat and noise was making me tired”), but other’s lapses are caused by their moral failing (“but she was being foolish”). Staff members, teachers and other people usually assign successes to themselves, and failures to the children.

But in real life, education “takes two to tango” – both the teacher and the student need to work at the process. So does engaging in arguments – the second person has to continue to give the first person enough responses that reinforce all the hollering and carrying-on.

Diffusing these explosive situations is difficult. We have to figure out just when a child is being truly manipulative, and when it’s some kind of cognitive dysfunction, and when it’s a child with some kind of cognitive dysfunction that on that day is just being manipulative – life is messy! Sometimes we can identify what kinds of situations tend to spark these meltdowns, and then during a good time, discuss with the child what ways we could work with them to change things so they would be less problematic. We can also defuse or at least reduce those meltdowns by not giving into the power struggles. We have to remain compassionate, but detached. Be calm, remove extra people from the situation, give plenty of personal space, have open and friendly body language to reduce the feeling of threat, even be silent sometimes to let the argument fizzle out. After the child has calmed down then we can reflect with them in an objective manner about what happened, what needs to be done to rectify the problem by restitution to the others who were involved, and work proactively to reduce such future events.

But as I redirected the boy from flicking bits of paper to flicking pool water, I realised that I would not be able to “make” the other staff member understand something until she was ready to look beyond the necessity for “not letting” him do something. I could not control her need to “win” the argument any more than she could control his need to not quit an activity when it was time to leave.

4 Comments

Running With the Red Queen

3 February 2007 at 22:01 (ADD/ADHD, Auditory Processing Disorder, Autism/Asperger's, Coping strategies, Hyperacussis, Inclusiveness, Mathematics And Statistics, Migraine, Paradigms, Stress, Tinnitus, Tourette's / tics)

Everyone in life has to compensate in some manner or another, because no one excels at everything. If you are not mechanically inclined, you take your car to a shop to get the oil changed, and you call a plumber to fix leaks or replace worn faucets. If you’re not comfortable with arithmetic calculations, you have a tax specialist do your annual return, and you arrange for automatic payroll deposits and bill payments with your bank. These are ways that ordinary people deal with ordinary difficulties, and no one thinks any less of them. In fact, the economy depends upon people’s interdependency — earning your living doing things for others is important to the Gross National Product, is important to a town’s sense of community, and is important to a person’s self-worth from feeling useful.

It is curious that people who have others do everyday things for them because they are rich are envied, whereas people who have others do everyday things for them because they are unable to do them are looked down upon. People with ability sets that are different than the “average” person’s run into problems because they are being “inappropriately incompetent”. Some of those “should be able to” things are related to sex-rôle stereotypes: a man should be able to fix a leaky faucet, a woman should be able to sew her own shirts. Among more traditional or conservative populations, a person is not faulted if they are incompetent at a skill that is reserved for the other gender. However, when someone cannot do something that is expected of everyone, or cannot do it well, or cannot do it consistently, they are then open to derision.

The Austrian psychologist Alfred Adler noted how people compensated and even over-compensated as ways of dealing with perceived incompetence and avoiding feelings of inferiority. Not all “incompetences” really are gross difficulties — they may merely be assigned as such by others around us.

I’ve mentioned before that my life is a mass of compensatory strategies. I compensate for auditory processing problems, and the tinnitus that increases the background noise problem. I compensate for prosopagnosia (difficulties recognising people from their faces). I compensate for all those organisational, time-sense, and executive-functioning issues related to ADHD and Asperger’s (planning, executing tasks including the getting-past-the-inertia stages, self-monitoring). I compensate for the hyperacusis, and my general clumsiness, tics and stuttering, and migraines. Generally speaking I compensate fairly well. So much so that most people don’t realise that I am working much harder to achieve nearly as well. I “pass for normal” most days, so people can’t understand why I’m having problems when I’m ill or stressed or simply trying to compensate for too many things simultaneously.

Adler would probably say that I over-compensate.

I had to go through Driver’s Education class twice to acquire the necessary motor skills. I did eventually learn to drive stick shift (manual transmission) and have even driven in both the UK and US. The day that I parallel-parked in front of my high school to request a transcript to be sent to a college was indeed a threshold moment in my life. (Even the transcript part was a highlight, as assaying higher education was uncertain due to my previous academic difficulties.) My husband once asked me, “What, can’t you drive and talk at the same time?” and I did not feel that it was unreasonable to answer, “No, I can’t.” I cannot drive a stick shift vehicle through city traffic, trying to find a business I had never been to, and talk on a cell phone. (I have Auditory Processing Disorder and he has a severe hearing loss — talking on the phone can be inherently confusing in its own right.)

There are classes when I struggle to keep my attention focused on the instructor, and also to understand what they are saying, especially if the classroom is mechanically noisy, or if the instructor mumbles or talks while facing the whiteboard or doesn’t present information in a clearly-defined format or use supplementary visuals. Because I am very good at being able to distinguish the important material in an educational presentation and record those details in sensible paragraphs, I have been a note-taker for dysgraphic or hearing-impaired students. But I have only been able to do that in those subjects where I was already familiar with most of the information — I could not be a note-taker for others if I was still learning all the vocabulary and concepts myself.

Mathematics presents special difficulties for me because of problems with sequencing, slow working speed, and occasional transpositions. It took me four years to memorise my multiplication tables, and I have flunked a number of tests over the years, and nearly had to take a class over. In university I dropped a course that I was getting D or F grades, to try it again later on to get C, B or A grades, and did that with more than one course. It was slow, difficult work slogging through college algebra, trigonometry, calculus, statistics, physics, and four semesters of chemistry. One of my current jobs is working as a special education paraprofessional. I help in the science classroom, but my main assignment is in the math classroom. The extremely ironic thing is that not only am I helping students with mathematics, but also that I am doing so in the very same school I attended years ago, in the same classrooms where I had once sat flunking math tests. (My first work week was not only difficult from the prosopagnosia-aggravated new-job disorientation, but also from “post-traumatic school disorder” as I had ongoing flashbacks.)

I actually did flunk a semester of secondary English and had to re-take that portion of the course. I have also written a book and hundreds of articles (on a variety of subjects) for magazines and newspapers. I tutor college students in composition classes.

Given these examples, it might sound as though my difficulties were all in the past, and have been made up for by my recent successes. That isn’t quite true. What I have done is learned how to work around some kinds of difficulties. With others I simply have to work harder to puzzle through consciously to figure out those things that most people do easily and without conscious effort. Some days I feel like Alice Through the Looking Glass, running as fast as I can just to stay in place.

The problem with over-compensation is that although I have at times felt that I had vanquished my personal demons of incompetence by having overcome various failures with landmark achievements, those successes do not mean that I cannot or will not have future problems! What helped more than those moments of personal glory (exhilarating though they were, despite lacking exciting soundtrack music), has been finding out why I have problems, how those problems manifest in my daily life, and how to work with them. Self-understanding improves self-image because it gives me tools for those ongoing and future difficulties. Self-understanding means that the next time I fail something (not “if” but “when”, because everyone does fail periodically), I will have the necessary cognitive and emotional tools to handle the disappointment. I will be able to handle defeat graciously, because it is a failure of task-specific achievement, not moral failure. Furthermore, I can extend that same grace to others, because we all have such problems, even though the details differ.

Out in our various communities, we need to be able to not only acknowledge that Yes, not everyone can do the same thing, but also destigmatise that fact. One of the tragedies with the current paradigms in the helping professions is the disdain and depersonalisation from “care-givers” to that people who need personal attendant services or other forms of assistance. We can’t all do the same things. Needing someone to change your diaper should be no more stigmatising than needing someone to change the oil in your car. There’s really something sick about people who feel superior those whom they serve — there’s an element of self-loathing transferred from one’s self to one’s job to the client. It is overcompensation of the soul-eating malicious sort. Service to others is about sharing strengths, not about bolstering one’s damaged self-worth at the expense of others’.

We should not have to overwork ourselves to over-compensate just to earn other’s acceptance.

7 Comments

To Be A Person, or, Not To Be A Person-With

30 August 2006 at 19:19 (ADD/ADHD, Advocacy, Auditory Processing Disorder, Autism/Asperger's, Deaf / Hard of Hearing, Hyperacussis, Inclusiveness, Invisible disabilities, Paradigms)

I promised to address “person-first” language. (And my pal David promised to “rip the piss outa [me]”, for which I’m curious what-all he has to say. Then again, I’m really curious as to what all of you readers here have to say; just who ARE you people??)

Person-first language refers to saying things like “person with a hearing loss”, as opposed to someone “being hard-of-hearing’. The philosophy behind this is that the person is more important than an impairment they have; that a person should not be known by a diagnosis. This is a reasonable goal, but like anything, it can be taken to extremes and has been.

I think “person-with” makes better rational linguistic sense when the “with” is a temporary (or preferably temporary) condition, as in “person with broken leg” or “person with cancer”. Person-first language makes all kinds of sense when trying to avoid the bad hospital habit of saying “the emphysema in 402”. The ENT says I am a person with hyperacussis and tinnitus.

Actually, I would end up saying things like, “I am nearsighted and have Auditory Processing Disorder”, and skip the whole person-with scenario. “I am brunette” is infinitely handier than saying “I have (or am a person with) brunette hair”. It’s understood that it’s my hair color we’re talking about, and that a description of me is only slightly delineated by that descriptor – I’m more than my hair.

When the condition is rather a state of being — something fairly permanent, whether acquired or developmental — then it’s (noun) as in autistic, Deaf, gay, male, dyslexic, Canadian et cetera.

Person-first can be prissy and awkward and sometimes is simply benign earnestness at being polite – well-intended but treacly. Or, person-first can be Politically Correct at its most obnoxious, demonstrating a belief that the condition is “recoverable” and thus meaning something should be done about it. At its worst, person-first demonstrates a belief that the condition is shameful, to be avoided or hidden, such as a person with homosexual tendencies who just needs a good dose of religious correction and a burning desire to be morally uprighteous and “normal”.

Early in my life I started doing things left-handed, so they made sure I learned to write with my right hand. And I’m still left-handed. My inner right-handed person was never “recovered” from that pathological condition, because that imaginary person was never there. I’m a lefty who has learned how to be ambidextrous, which often means that I’m clumsy any way I go about it. Trying to pretend I’m really a right-handed person and calling me such never changed that. Likewise, autistics are not broken or diseased neurotypicals, anymore than gays and lesbians are not confused or immoral heterosexuals.

(I just wish there was a better term for “I have ADHD”; ADDer just doesn’t cut it for me. Maybe they’ll rename it – again – and we’ll have a more euphonic term.)

25 Comments

I Miss My Opposable Thumb

20 July 2006 at 21:12 (ADD/ADHD, Attribution Errors, Auditory Processing Disorder, Hyperacussis, Invisible disabilities, Proprioception, Tinnitus)

Don’t get me wrong — I’ve not really lost my entire thumb to accident. I merely knicked a bit off the tip with a kitchen knife. But unlike a mere cut where the skin just has to close back together, this is a small concavity that takes a bit longer to fill in. Because it’s on the tip of my thumb, it’s prone to all sorts of ongoing abuse that would prolong the healing process. So, I have one of those plastic caps taped to my thumb to protect it. And of course I can’t really use my thumb for much bandaged like this.

So like many other things in my own life I had to develop coping strategies to accommodate this temporary disability. I use my index and middle fingers in a pincer grip for holding small things (hooray for doublejointedness). Shoelaces are really tricky this way, but I’ve always asserted that shoelaces are the work of the devil (I was in 3rd grade before I finally mastered them), so I stick to loafers and sandals whenever possible.

Last night I remarked to hubby that my entire life is composed of coping strategies.

I have coping strategies to deal with the ADHD forgetfulness, distractedness, and hyperactivity. We have a baker’s rack near the front door for backpacks and shoes. My necessary pocket stuff is emptied onto a special dish at bedtime, and reloaded the next morning when dressing. I set my medicine bottle on my computer keyboard. I write notes to myself (and others) using a dry-erase marker on the bathroom mirror, as one ends up in the bathroom on a regular basis, it doesn’t get lost like scraps of paper, and I can be sure of seeing them when getting up the next morning. I turn off the oven before removing the food. I have an index card in my shirt pocket where I keep my To Do list and ideas to pursue. I set my car keys atop whatever object I need to take with me.

I have coping strategies to deal with the Auditory Processing Disorder blips where I can’t understand what someone has said to me, and the resultant overtaxing of my short-term memory that makes recalling verbal instructions and lectures so damn difficult. I watch television with the closed captions (subtitles in English) turned on. I take extensive notes when given verbal instructions. I request emails instead of phone calls, printed meeting agendas, and transcripts.

I always have earplugs on hand to turn down the volume a bit in noisy places because of my hyperacussis, and frequently listen to background music to drown out my tinnitus.

I have coping strategies to deal with my faceblindness. Like other prosopagnosics, I rely on accessory features of posture, gait, mannerisms, voice, hairstyle and location to identify people. I also rely upon name tags and prompts by family members and others. When we’re in crowds, I instruct people to wave at me so I can find them again.

I have coping strategies to deal with my clumsiness (although given the continuous succession of bruises and the number of scars I have, apparently insufficiently adequate ones). For years we did not have a coffee table because I crash into furniture too often. I transfer raw eggs with my hand palm-up to let gravity work for me. I pour liquids with the containers over the sink to make spillage cleanup easier. I keep burn ointment on top of the refrigerator instead of in the bathroom medicine chest because I get burned in the kitchen, not the bathroom. I skid the sole of my foot across the top edge of a staircase to find the first step. I do complex hand-and-foot actions sequentially instead of simultaneously. I wear glasses with metal rather than plastic frames, as they bend instead of break. I wear snug clothing to improve my proprioception so I don’t run into furniture as often.

I have coping strategies to deal with my intermittent reading & writing transpositions. Everything has to be proofread. I block off extraneous numeric data with a piece of blank paper so I don’t pick up the wrong number. If I have to write out calculations for students, I ask them to watch me really closely and let me know if I transpose something. (This makes me more human to them, and also makes them watch me like a hawk, thus paying more attention to the lesson!)

All these coping strategies mean that on good days I may even be over-compensating for some things. Overcompensation is something I sometimes do well. Spelling was one of my worst subjects; as an adult I became a newspaper proofreader. I had a speech impediment and occasional stuttering that required speech therapy; I’ve recorded books on tape and now I do a lot of public speaking and get return invitations. (I also get queries about my “accent” because when I’m tired I tend to over-enunciate, producing a sort of Received Pronunciation effect.) I have ADHD but for several years of college I lived in two cities and did four jobs while taking classes. I have APD but have been a note-taker for other students, albeit in classes where I already knew most of the material. Adler would be proud.

There is however an inherent drawback at being so good at developing coping strategies: because I can more-or-less get by most of the time, people can’t tell that I’m having to work twice as hard to do what I do. So when I’m tired and/or sick or otherwise stressed, I don’t do things as well. To be frank, I do poorly. A lot of my coping abilities lie in the fact that I’ve worked to create enabling environments for myself. Take me out of those (for examples, when on trips, or when starting new jobs), and a lot of my strategies fall apart.

Because these are invisible difficulties and disabilities, people don’t understand why I intermittently fail or falter. They can’t understand why an otherwise apparently smart person suddenly does and says apparently stupid things. This means that sometimes people will decide I’m being lazy or rude, or if they don’t know me they will decide that I’m stupid.

In the long run, the attribution errors can be the most disabling thing of all.

2 Comments

Is That Ringing Sound … the one in my ears, or cash registers?

5 July 2006 at 5:47 (ADD/ADHD, Anti-Quackery, Autism/Asperger's, Hyperacussis, Medical Quackery, Migraine, Tinnitus, Tourette's / tics)

Every now and then I will buzz around the Web to see what the latest absurdities come ducking out of the quack pond. There are the inevitable villains that “cause” AD/HD or autism: mercury, food colourings, French fries … I shit thee not! Maybe it’s that theoretical autistic lack of imagination, because I never, never would have associated the consumption of French fries with Asperger’s. <Blogger falls of rocking chair laughing> I won’t give these fools the page hits by linking to them; it’s at autismfries dot com.

Meanwhile, back at the ranch…

Then there are the oddities in my life that make life less-than-thrilling, such as the tinnitus, hyperacussis, tics, and migraines. The personal testimonial story at tinnituscure dot org is probably one of the longest I have yet to read. They have a homeopathic remedy that “heals damaged nerve endings in the inner ear” and another one that will “actively stimulate the hypothalamus”. Gee, if they can restore damaged nerves, maybe my hubby will no longer need his hearing aids, and then I won’t have to listen to the occasional feedback squeal, either.

Apparently an “integrated” facial massage at Integrative Manual Therapy (centerimt dot com) will resolve hyperacussis “The body is always speaking volumes of information that provide incredible diagnostic tools. Integrative Diagnostics focuses on listening to that information. As a simple example each system in the body has its own unique circadian rhythm–a more subtle version of the way in which the vascular system presents a distinct heartbeat for diagnosis. Integrative Manual Therapy practitioners utilize advanced yet gentle palpation techniques to “listen” with their hands to all of these rhythms. In doing so they determine whether each system is in optimum flow or suffers anomalies and impediments.” How sweet. They also have classes available: “Health professionals come to CenterIMT to learn Integrative Manual Therapy from a wide variety of career backgrounds. Physical Therapists. Occupational Therapists. Doctors. Speech Therapists. Massage Therapists. Chiropractors. Athletic Trainers. Naturopaths. Homeopaths. Nurses. Dentists.” Don’t forget the books, and oh, green tea for sale, too.

(Oops, ADHD moment here – how long has this mug of Earl Grey been steeping?)

Moving right along, lessee… how about Tourette’s being caused by a “phlegm mist of the orifices”? (itmonline dot org) Ooh, this is treated with acupuncture and herbal mixtures, including scorpion. Fond as I am of arthropods, I’ll pass on that one. That reminds me, someone out there was researching Botox for tics – I could imagine someone taking that route for something like a cheek tic, but I’m not a neurologist, so I don’t understand the physiology of how it would help say, my shoulder-jerk tics or nose-tapping tics. (Then again, I don’t think that I’m dx’ed as full-fledge TS; the tics aren’t obnoxious enough. They can make singing along in the car more entertaining, though, especially after a long, tiring day at work.)

Speaking of music, apparently listening to a CD will cure migraines, “Like all our binaural beat recordings, simply slip on your stereo headphones and press the “Play” button on your CD player. The binaural beats will automatically begin affecting your brainwaves, and you’ll soon realize the benefit – no more headaches and a clear, fresh mind!” (binaural-beats dot com) Other CDs are available for balancing your chakra points, taking a power siesta, and more: “Brainwave entrainment is used in treatment of depression, low self-esteem, attention deficit disorder, drug and alcohol addiction and autism, to name a few.”

I’ll pass. When I want to sort out my brainwaves, I take a more traditional method: staring off into space and rocking. The tinnitus becomes less noticeable, the tics calm down, and sometimes I can damp the entrenched sort of migraine. Now there’s an approach to relaxation that merits some serious study.

10 Comments

Overcoming Inertia and Moving Into Commitment (PART 1)

22 June 2006 at 20:55 (Advocacy, Attribution Errors, Auditory Processing Disorder, Autism/Asperger's, Hyperacussis, inertia, Injustice, Migraine, Paradigms, Personal change)

So much of what people have been blogging about lately is the necessity for major changes in what assumptions are made about the abilities and worth of people, all kinds of people, even those that have been considered to be of so little worth as to need removal from the gene pool or to not even rank the status of murder victim.

High moral ground is easy to take. It’s abstract, refers to grand sweeping generalities, and oddly, often doesn’t make a lot of impact on our daily lives. It’s easy to witness for big things against the big impersonal bureaucracies or in demonstration marches. But it’s far harder to protest the steady barrage of small, deadly insults from family, neighbors, coworkers, neighbors, fellow church or club members and other acquaintances.

Part of this lies in the fact that writing a letter to an editor, or posting on a blog, or doing a public presentation all give one the opportunity to plan ahead, to contemplate and improve wordings and rationales, and to deliver precise quantities of verbiage in a manner that is calculated to be clear and rational. You can define the problem and explain your position.

Instead, real life happens. And here we find ourselves in odd moments with unexpected opportunities to assert that NO, this is not right!

“Normal” injustices are easy to point out. “No, wait a minute – the end of the queue is behind me.” That Mr Next-Guy-In-Line here in front of me is in a wheelchair doesn’t matter; no one should be treated as a nonperson or noncustomer. (And then the interloper apologises to me for having cut in front of me, still ignoring the man ahead of me in line!)

The unusual injustices are hard to point out. These are the things where the current paradigm so permeates culture that most people can’t even see the injustices. When those are pointed out, most people do not even understand why they are problems. Pointing these injusticess out attracts dismissal. Expecting and then demanding fair treatment on someone’s part earns denial. Being the recipient of denial and dismissal, not even being taken seriously, gives one the horrid sensation of fighting fog.

Full-fledged denigration would almost be easier than denial. Anger (even excruciatingly polite righteousness) is easier to deliver. But being “on a mission” when people fluff off your responses as unimportant or silly or borderline crazy or merely picky is very, very difficult.

It’s hard to advocate when people don’t even understand what the hell you are talking about. You’re not starting from ground zero, you’re starting from the negative integers. You can’t even protest the problem until you can define it for someone and then convince them it exists!

Moments like that can paralyze one, especially when they happen unexpectedly, and you are left standing there gawping with profound indignation, but finding that the words just don’t come. There are no set phrases laid down by Dear Abby or Miss Manners to initiate the right social scripts for some things. To ask for apology or to demand equal, human treatment requires the transgressor to understand the problem in the first place.

Hey, I’m not crazy or contagious with some loathsome disease or going to harm your children or steal your wares. I’m just exhausted from working nine hours and dizzy from the smells of the cleaning solvents and perfumes and new merchandise and all the crazy flickery lighting and background noises, and being ticcy, and having auditory processing delays, and flinching because my hyperacussis makes me overly sensitive to that sudden screech, and wearing my sunglasses inside because a migraine is creeping up on me, and HEL-LO Mr Cashier you don’t need to turn your back on me so you don’t have to acknowledge my presence and wait upon me, and Mommy you don’t need to drag your kids away, and Ms Assistant Manager don’t bother asking me if I want to sit down by the pharmacy so someone can call a responsible party to come fetch me. I’m just a harmless shopper who needs to get a few groceries and go home and make dinner for the family and then get some rest! I’m an otherwise Okay Person and I belong here!

Being able to advocate in such situations can be hard at first. It’s certainly not a lack of desire. It’s not necessarily a lack of ability. Given enough moments alone, some useful scripts can be formulated and practiced, to have on hand for those brain-dead moments. The hard part is overcoming the decades of inertia that have been trained into one. Be a good little victim. Don’t inconvenience people. It’s not important. Who the hell are you to complain?

Personal change is not always easy. It’s not usually the cognitive impetus that is difficult; sometimes it’s not even the emotional impetus. It’s the inertia that holds us back, that prevents us from speaking up when something wrong is happening, or from speaking out and initiating changes. The internal change cannot be merely called forth just by wanting it.

On the cusp of genesis is the threshold of inertia. You must gather sufficient momentum to force, to hurtle yourself through the portal. Up to that very grain of time is an oozing molasses of eternity that impedes the effort, although the mind is halfway on the other side. But mere movement is not enough, for mere movement is not progress. To overcome the inertia and move into change, you need sufficient commitment. Not just commitment to an idea, although that is first necessary, but commitment of the heart towards a goal, a purpose for something.

Once that commitment is invested, the portal is not just a change from one room to the next, but a threshold that lets you fall upwards with a single large, fateful step …

“HERE WE GO!”

Personal change is dangerous, not for the person taking the step, but for everyone else. The person who makes that transition is pushing at the very assumptions of the common paradigm, because any major changes you make in yourself are going to create ripples that affect others.

It’s this ripple effect that creates some of the inertia – you have to want to step forward, not just for yourself, but also at risk of changing the way others relate to you.

What helps create some of the crystallization of will is the realization that implementing change not only creates ripples, but also creates opportunities. “Nothing succeeds like success”, and crossing that threshold is a success. It is not only a moment of empowerment, but also of genesis. It initiates a hub and lightning rod for other changes; you acquire some of the momentum of the universe, and previously unimagined and oft-unexpected things are now drawn to you; new webs of connectivity sprout and catch onto the new hub, and you find yourself meeting people and getting aid, encouragement and inspiration from unexpected sources. This liberation and delight also means that you are now an agent of change yourself, and can in turn connect with and help others …

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