More “Trap Bias”

Whenever I read statistics about the “increasing rates of autism”, I heave a big sigh. Those statements invariable contain a whole number of assumptions, many of them flat-out wrong, or at least unexamined. In the epidemiological data, there are diagnostic issues and census issues and statistical issues and of course, the inevitable agenda issues in the reportage of the census results and analyses. I’ve previously discussed a number of these problems, including incidence versus prevalence, and correlation versus causality in the post, “Epidemics of Bad Science vs Epidemics and Bad Science”

What I would like to address today is a related issue with diagnostics and perceived prevalence, meaning, “How do we know who has autism or AD/HD or a learning disability, and how many such people are out there?”

In entomology (and in other zoological branches) we have a concept known as “trap bias”. There are a number of ways of taking a census of an animal population, including using traps. A “trap bias” means that the kind of trap you use to census a population will limit the responders to your census, and thus create unintended biases in the results.

Now, if a few synapses in your brain just fizzled from that wordy definition, let’s try a simple example. Read the rest of this entry »

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Transitions, ACK!

Read up on descriptions of students with autism, Asperger’s, or Non-Verbal Learning Disorder, and you find the familiar piece about how such people “have rigid routines” or “cannot deal with changes in routine”. Some of those descriptions are um, much more rigidly defined than others. I have real problems with descriptions that use a lot of always or never, as real humans just aren’t that binary. In such cases, the author is being more literal-minded than the group they are describing!

In contrast, statements worded as, “Dislikes changes in routine” or “Has difficulty with unexpected changes in routine” would be much more accurate, especially with regards to the unexpected changes — you can brace for, and plan ahead for expected changes in routines.

Therefore, consistency in routine is suggested as a good instructional, parenting, and employment tool. It’s also recommended for students with AD/HD as a support measure.

But you know what? Everyone is attached to their routines. We like to get through our morning preparation without a lot of glitches. “OMG, we’re out of coffee!” We expect holiday celebrations to go a certain way, and when two people become a couple they find out how many rituals were specific to their own families of origin, and then the couple has to decide how they are going to select and combine both of their rituals.

People in general don’t like having to adjust their day around massive changes in their schedule, and are more than a little vexed at unexpected and unavoidable challenges thrown in. Airline travel went from something exciting to a dreaded ordeal as airport security became tighter and tighter, and the airlines restricted what kinds of and how many comfort objects people could bring with them on the plane. No, “comfort objects” aren’t just teddy bears or worry-beads; a wide variety of mundane objects like your favorite bed pillow, brand of soda and portable music player are also comfort objects.

So why are some people so much more attached to their routines, and then undone when faced with changes?

There are a several reasons, related to situational decoding, compensating, and attention-switching. Read the rest of this entry »

Time to go

“How long can it take to walk out the door?”

Other people ask us this. They are incredulous as we struggle to get to places on time, much less with all the materials we needed to have.

We also ask ourselves this when we are getting ready or planning. Surely, we think to ourselves, merely walking out the door and getting into the car takes almost no time at all.

As if!

And that’s why we struggle to get to places on time.

It takes us far longer to “get our shit together,” to remember everything we need, and then get into the car, and unload all the baggage, settle down, and get ready to drive. The least speed-bump in the getting-ready process (like a mislaid car key) throws everything into chaos, which stresses us beyond dealing with that little event, often resulting in getting so distracted from our tediously-created coping methods so that we forget something we usually can remember, or almost-forget and have to go back in (maybe more than once) to fetch something nearly forgotten.

Take a deep breath.

Let it out slowly.

Yeah. Just thinking about these situations reminds us of all those crazy days, weeks and months and years of them. We remember all the scolding, the embarrassment of being late, of missing appointments, of getting to places without something important or even the most necessary thing that may have been the reason for us going there in the first place.

Just being stressed about trying to leave on time makes things worse; the clumsiness increases. Even after finally getting ready one morning (in N-recursive steps, as usual), Read the rest of this entry »

De-stressing with O.T.S.

Funny short story:

Hubby and I are at the local pub having a Guinness. Naturally, the big-screen televisions are on, and he asks me, “Are you watching the basketball game?”

Are you kidding?! I think to myself, and answer, “No.”

There’s a slight pause, then he asks, “Are you staring at the ceiling fan?”

Busted!

Well you know, I’m there to relax, right? Chatting with hubby about life, and enjoying my ale is only part of that.

A pal of mine is very stressed. Sadly, this is a common problem. But even worse, over the years the repertoire of natural coping methods have been so discouraged, extinguished or suppressed that my pal can hardly name what is helpful. Now that is really sad.

We all have ways of dealing with stresses. They can be roughly divided into three general categories: organisation [O], timing [T], and soothing activities [S]. I have denoted each with an initial because the text flow did not easily lend to listing these in categorical sections.

Prevention [O]: We avoid situations that we know will be stressful. Sometimes we can have someone else do a task for us, or set things up so the task does not actually have to be done.

For example, Read the rest of this entry »

A shot in the arm, A slight kick in the butt

Last week I took two of our cats to the vet for their annual check-ups, including the Rabies, Feline Distemper, and Feline Leukemia vaccines. Some years ago we lost one of our cats to Feline Leukemia; the poor kitty died just a few months before the vaccine was available.

This Saturday past I reminded my gardening students that if they cannot remember when they last had a Tetanus booster, they they should go and get one, because a booster is recommended every ten years. The number of people to have survived Tetanus is vanishingly small; it’s pretty much a death sentence. It’s also easily prevented by a simple vaccine. Sure, your arm is a bit sore for a couple of days, but that beats dying an extremely painful and highly unnecessary death. As I reminded my students, “You get your pets vaccinated, you get your children vaccinated, so you should get yourself vaccinated!”

Except there are a few people who don’t want to get their children vaccinated. A drop in vaccinations means not only that some people get sick, but a drop in vaccinations also means a loss of “herd immunity”, meaning that most of the population is not immune, so there are enough people who can catch and then transmit the disease. When you make a decision to not immunise, you are not making a decision that affects just you and your children. You are a making a decision that affects everyone else in your community.

That is why we had recent epidemics of mumps and measles in the UK and the US, leading to hundreds of sick people, and some who were disabled or killed. Because I work with students in various schools, I get lots of exposure to viruses. I had not previous had a mumps vaccine or the disease, so during those epidemics I went and got the MMR. Now I’m protected against Mumps, Measles and Rubella (even though I had the other vaccines in ’63 and ’70, the combined vax helps boost my immunity). I also went through the Hepatitis B series that year.

So yes, I’m a big proponent of vaccinations.

And no, I do not subscribe to the hysteria generated by a few noisy, well-meaning but seriously-deluded or paranoid people who believe that there is a world-wide conspiracy Read the rest of this entry »

Communication Blips

I’ve not been posting much lately, due to a combination of a head cold (you would think that would result in more sleep, but good sleep still eludes me), major changes in my job schedule, an evening class that I’m taking sucking up time with studying, new Saturday classes that I’m teaching sucking up time with preparations, and ongoing communication blips between my household wireless router and the AirPort card in my MacBook. I think the wireless problems annoy me most of all, because it’s being able to rely upon the little things that enable us to deal with the big things.

Having digital communication blips reminded me of the other sort that we sometimes deal with around here.

So. I have a teenager of the typically reticent sort, who at times is given to answering open-ended questions in monosyllables. That in itself is not particularly uncommon. What we do run into are situations where the Kid is still learning what needs to be actively communicated, rather than assuming that others will know what is wanted or planned. These are the little blips of “mindblindness” that we sometimes run into with the Asperger’s and/or AD/HD kids. (Adults have these problems at times too — the difference being that we have figured out the more common situations, but still miss moments here and there, leaving our spouses and co-workers puzzled or annoyed).

What are these communication blips? Read the rest of this entry »

Maslow Cleans House

This How-To post is dedicated to a pal of mine who was commenting about how hard it is to get the apartment (flat) tidied and cleaned up. I was trying to describe how I used Maslow’s Hierarchy of Needs, natural supports, and the Premack Principle together as means for organising this most mundane set of chores.

In this case, we don’t mean that housekeeping is “hard” in the sense of physically mopping a floor, but hard in the sense of figuring out where to start, how to keep the momentum going, getting the job finished, and even figuring out what to do with stuff. The so-called “executive functions” of planning, execution, self-monitoring et cetera are not limited to office work — they are just as necessary in the realm of what used to be referred to (somewhat tongue-in-cheek) as “domestic engineering”.

Amazingly, tidying and cleaning a small apartment is more difficult than doing the same in a full-size house. Granted, the larger house has more rooms, which in turn means more square area to be vacuumed or mopped, and may mean twice as many toilets and tubs to scrub. But the problem with the tiny domicile is that the average 21st-century post-industrial resident has a certain amount of Stuff for daily living, and that amount of stuff does not shrink proportionately just because the domicile does. (I love the German word for “stuff”, Kram, because cramming my Kram into odd places is what I spend a lot of tidying time doing.) Worse, small residences usually lack great amounts of storage space. Unless you are spartan in your personal possessions by dint of poverty or strong design aesthetic*, you have more stuff than the meager cabinets and closets will hold.

Of course we have to pick up first to clear the surfaces so we can clean them. But we could spend all day trying in vain to get things picked up, especially if we have AD/HD and are easily distracted. Picking up is way too recursive — you pick up one thing to put away, take it to where it belongs, find something at the end point or en route to the end point, pick it up, maybe put away the first thing, try to put away the second thing, maybe manage to do so without being distracted by the third thing, or get interrupted by a phone call or a cooking timer or remember something else or…

Heavens, at that rate you would need to get your shoes re-soled before you got the place picked up! And in all that, you’re making a half-assed attempt at trying to clean things as well, because you got thirsty and found something moldy or spilled in the fridge and —

ARGH!

To make any headway in my own domestic engineering, I finally had to set up a hierarchy, somewhat similar to Maslow’s hierarchy of needs. The needs are dual, based upon the needs of the residents for living there, and also upon the housekeeper for being able to get things done effectively. My own order of operations is set up as much as possible for natural supports to be created. Read the rest of this entry »

Fishing With the Wrong bAIT

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

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

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

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

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

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

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

The 3-pound Exemption (disembodied woo)

You gotta feel sorry for Topeka, Kansas. The state’s capital city is not only home to the infamous Fred Phelps and his Westboro Baptist Church, and has recently been the battleground for Intelligent Design vs Evolution counter-counter-legislation by the school board (currently with the majority ruling pro-science), but now the capitol is host to the paranoid propaganda by the CCHR. CCHR is the Citizens Commision on Human Rights, which despite the generic name is really just a front for Scientology. Their exhibit is titled, “Psychiatry: An Industry of Death” (well, no hidden biases there). Correspondent for the Kansas City Star newspaper, David Klepper, writes that the “the Capitol sees its share of traveling displays and wandering weirdness”. He notes that any group that can pay the fee is allowed to put up a display as long as it is not obscene, and describes the content thusly: Read the rest of this entry »

ALDs in the Classroom

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Mystery Jam and Other Achievements

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

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

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

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

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

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

It’s Not Just Me

“It’s not just me.”

I always feel ambivalent saying that. It’s part, “I’m not nuts or just being whiney, it’s real,” and part “I wouldn’t wish it on anyone else.”

Recent stories on BBC News describe how fluorescent light bulbs are not just good for saving energy — they can also be problematic for some people. The lighting can worsen skin rashes in people with photosensitive conditions, including, “the auto-immune disease lupus, the genetic disorder Xeroderma Pigmentosum (XP), certain forms of eczema and dermatitis, photosensitivity, and porphyria”

It has been estimated about 100,000 people in the UK with these skin conditions will be affected.

ME (Myalgic encephalomyelitis, AKA Chronic Fatigue Syndrome) was also mentioned.

Dr Colin Holden, President of the British Association of Dermatologists, said: “It is important that patients with photosensitive skin eruptions are allowed to use lights that don’t exacerbate their condition.”

The bulbs were also mentioned as potential triggers for migraines or epilepsy.

However, Karen Manning, from the Migraine Action Association, said this could be damaging to some sufferers.
She said that up to six million people in the UK suffer from some sort of migraine attack.
“These bulbs do trigger migraines for some of our members – it’s either the flickering, or the low intensity of the light, causing eye strain.

Some people with AD/HD or autism also complain about similar problems with fluorescent lighting.

Currently there is a plan in the UK to voluntarily phase out incandescent bulbs by 2011, as part of the effort to reduce overall CO2 emissions.  This is important as part of the world-wide effort to reduce global warming; the US could stand to be more proactive.

But we need to remember the important tenant of Universal Design:  there is no one perfect solution for everyone.  Employers, schools and other organisations will need to be able to have options for people, as indicated by the ADA (Americans with Disabilities Act), DDA (Disability Discrimination Act) and similar rulings.  Hopefully advances in LED lighting or other new technologies will result in other products that work well for various purposes.

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.

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 »

ADD-itional News

While driving home, I just heard this latest ADHD news on NPR (link has text synopsis):  some children diagnosed with ADHD do literally grow out of the disorder by the time they are in their 20s.  Parts of the brain responsible for “the control of action and attention” experience about a two-year lag in these children, compared to their age-cohort.  The MRI study at the National Institute of Mental Health looked at scans of over 400 children (half diagnosed with AD/HD) taken over several years, to track the development of various areas of the brain.

Previous studies have shown that the AD/HD brain shows structural differences, as well as differences in the levels of neurotransmitters*.  Although some people continue to have these differences into adulthood, not everyone does.   Apparently this is sometimes merely a maturational delay, and sometimes a more permanent developmental difference.

* No, AD/HD is not “just an excuse” to cover up lazyness, or due to “bad parenting” (although poor parenting practices can certainly aggravate related issues), nor is it due to food colouring, sugar, et cetera.  There are a plethora of MRI scan studies out there demonstrating that the condition has a real, physical basis.

a-Tunes

So last night the aspie kid, dad and I were sitting around the kitchen table, playing card games. We made a dent in some of the leftover Halloween candy, consumed a couple pots of tea, and generally had fun. Later on that night I was thinking over the evening, and I realised that there were some marked differences compared to similar evenings of my own youth. Read the rest of this entry »

How to Get Ready, in N Recursive Steps

(That’s N for an unspecified number.)

Thank goodness I have that extra 15 minutes built into my morning routine, because I needed all of them today. It was one of those mornings when I’m amazed that I got out the door and where I’m going without having achieved some minor catastrophe. The whole ADHD routine would be quite comical were it not so damn typical.

Of course, there are a few people who “don’t believe in” AD/HD. And there are people who believe that it exists, but can’t quite get their brains wrapped around the whole How and Why of it. You know, What could possibly be so hard about something as straightforward as getting dressed, eating breakfast, and driving off to work?

Well, it’s like this: Read the rest of this entry »

Time to get dressed

There I am, finally dressed and breakfasted and medicated and packed for work. A storm was coming in, so it was actually, finally cold enough to wear a jacket. I pulled my leather bomber jacket and wool fedora from the coat closet, then set my purse and lunch bag down to pull on the jacket.

Meanwhile, hubby comes by from the kitchen to give me a good-bye kiss and observes, “You look like you’re in pain, or tired, or both.”

I nod; it’s both. I’ve been slow getting up and ready in the mornings, hence slow to eat and then take my meds, and the dosage on the arthritis medication was halved to see if that helps the hypertension. My HRT was also dropped for the same reason, so I’ve not had a good night’s sleep the past month due to frequent hot flashes. Kinda sucks, but life goes on.

Then I’m slowly flapping my left arm, trying to get it into my left jacket sleeve, which is absurd because normally I can reach my arm around backwards so much that I can even scratch my own back. Read the rest of this entry »

Power surges and outtages

“Power surges” is the common joke phrase referring to having menopausal hot flashes.

Oh, yes. Because what’s life without something new to deal with? And naturally, it’s something inter-twined with everything else. Generally when women experience menopause, it’s because their hormones are going from the usual monthly oscillation to a damped oscillation, where the ups and downs get smaller and smaller. Mine aren’t — this is the thrill of quitting my HRT (hormone replacement therapy) that I’d been on after surgery five years ago. In a mere day’s time, I went from a low dose HRT to nothing. Klud.

First I had what my OB/GYN described as an ovarian cyst the size of an orange, which cyst+ovary she somehow managed to remove from a mere 1″ (2.5 cm) incision. (I suppose that pulling out large objects from narrow passages is the specialty of OB/GYNs.) Having been relieved of that painful annoyance, things went well for about a year, and then I started having the periods from hell again. They turned into the periods from hell with interperiods that were nearly as bad — now I had endometriosis.

That was bad enough, but the worse part wasn’t the surgical solution — Read the rest of this entry »

How hard can it be?

A few years ago I had the pleasure of providing the annual Inservice training session for a university’s tutoring department. One of the themes I explored in brief was how tutees, especially those with various learning disabilities, may have processing difficulties. We have to take information in, make sense of it, retrieve information, and then be able to relay information back. Various kinds of learning disabilities interfere with steps in this process, and the interference can happen at more than one step, especially when a person has more than one kind of difficulty. (Learning disabilities and other physiological issues are often co-occurring, technically known by the dreadful-sounding term of “comorbid”.)

The upshot of all this is that any “speed-bumps” or “road-blocks” in the processing will result in slow processing (it takes longer to do things), or uneven processing (some days it’s more difficult to do things, not always for apparent reasons), or intermittent or chronic inabilities to do things (being able to do things on some days or in some hours, but not others, can be more frustrating than never being able to do them).

There are a variety of disabilities out there, but instead of describing how each one can affect a person’s ability to respond in educational efforts, I’m going to describe how processing works in general, and at which steps some disabilities become apparent.

Whenever we interact with the world, there is a whole series of steps that has to happen. Let’s take the subject of, “Answering a question asked of you”. Most people assume that this is really simple, and thus, easy. Hah! Read the rest of this entry »

Attendance Required

Earlier this week I had to sit still in one place and pay attention for a longer period of time than I’ve had to do in ages. Man, I’d forgotten how utterly difficult that is to do! I had to not just sit, but “sit appropriately” on a hard wooden pew, and stay seated for three hours solid, and also pay attention to what a bunch of people were saying. I was part of a panel of jurors that had been randomly selected to go through voir dire for jury selection. Of the 24 people who showed up, 8 were finally selected to be the jury. However, all of the extra panel members (including myself) had to pay attention to all the voir dire questions to have our own answers ready in case any of us were to replace a dropped juror.

Sitting there all that time made me aware of how frequently I had little shoulder or head tics. And how much I wished I had a “fidget widget” to have something to do with my hands. And how much I jiggled my foot, and repositioned myself. And how much I wanted to sit there and rock from side to side, but feel inhibited to do so in public (even though I probably do rock a bit when I’m not aware).

There were some expected bad parts and unexpected good parts to the experience. Read the rest of this entry »

Accommodating the Normals

In your place of business, educational institution, or public service area, you will have to make certain accommodations for the “normal” (“Temporarily Able-Bodied”) patrons. (Please note that within Normal culture, it is considered appropriate to refer to them as “normal people” rather than as “people with normality”.) Normal people will usually succeed in schooling, and will apply for jobs that they can do, presuming that they are given accommodations. These needs are diverse, and such accommodations include, but are not limited to, the following items: Read the rest of this entry »

Mitigating measures

“Ms Andrea, please explain to the Court how being homosexual substantially limits one or more major life activities.”

“What?”

“Your case to the Court is a discrimination case, claiming the defendant made homophobic remarks. Please describe to the court how homosexual you are.”

“I … what, no. I never said I’m a lesbian, or bisexual, or even heterosexual. I’ve never made any kind of formal statement about my sexual orientation. This isn’t about whether or not I’m gay. This is about the slurs, threats, and homophobic remarks at school. It’s about sexual harassment.”

“Ms Andrea, do not waste the Court’s time. You cannot make a case for discrimination unless you can prove that you are a member of a group that has been discriminated against. Now please explain to the court how being homosexual substantially limits one or more major life activities.”

This is satire, of the dark sort. I have never really filed a court complaint. My actual time in a court process is limited to paying a minor speeding ticket (lesson learned: cruise control is a good thing).

I have been at that ugly social place (repeatedly so) where complaining about homophobic remarks simply sets one up for further sexual harassment, because everyone assumes that complaining about such means that you are gay, and that because you’re gay you “deserve” whatever abuse happens.

The point to this bit of theatre of the absurd is that a person need not be a particular sort of person to have been harassed or discriminated against. Read the rest of this entry »

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