Joining In: Things CAN Be Different

I’m feeling a little bit melancholy today. I have recently lost treasured friends and am compelled to reminisce about my former life and the things that used to go on in our society that seem to be quickly going extinct as the landscape of our local communities within this country and the world becomes more stark and foreign to my eyes.

The home where I lived for the majority of my years in Calgary was within a couple of blocks of the home of the renowned Canadian scholar, Mayor of Calgary (1963-1965), Lieutenant Governor of Alberta (1966-1974), Officer of the Order of Canada, friendly acquaintance and client of my Father’s veterinary practice, and [far more importantly to me] one of my most humbling personal role models and mentors, Mr. Grant MacEwan.

Every day that he travelled from his home to work at the University of Calgary and back (or wherever else he roamed), he passed in front of my home as he walked on his way down our street. I remember it from as early an age as 7yrs old, shortly after we moved into that neighbourhood.

I remember it quite clearly from those early years because Mr. MacEwan was regularly involved in the Stampede Parade and many charitable events, besides just being the nice man who visited our veterinary clinic regularly to discuss one of his favourite subjects and former professions, Animal Husbandry, while we tended to his cats.

I came to know the fuller scope of work that Mr. MacEwan engaged in and soon realised that he was so busy helping everyone else by creating an educational and social legacy for our country that he didn’t often have much time to spend on himself. In my earliest years I often made it a point to meet him with a cup of tea in the morning at the end of our front walk to aid him in his travels, standing there in my pyjamas feeling like I was serving some former King. After all, I had seen him on the television with Her Majesty – Queen Elizabeth!

Every winter the snow on the sidewalk outside would grow dangerously deep within no time at all when it was really coming down and I would worry about him trudging through it in the dark. I decided to do something about it one day near Christmas as a seasonal favour – since everyone was in the mood to give. I made myself get up at 5 o’clock the next morning and bundled myself shabbily against the cold as best as any young boy can. I carried our BIG shovel up to the end of our street where the bus stop was and started shovelling my way back home, hoping to reach my mark in time to also serve him some tea. Oh, how a child overestimates their abilities and underestimates the difficulty of a task at hand. I only made it about halfway there when he walked up to me and quickly passed by with just a tiny nod and a small gestured wave of recognition. That was enough. He may as well have shouted out the loudest honours imaginable so the whole street could hear. I was thrilled!

That was the first time I made that effort. After a while I could shovel much farther and, thanks to Mr. MacEwan directing our Scout troop in winter survival basics, was always much better turned out against the cold. It wasn’t too long before I could shovel all the way down our street and beyond - all the way to his front doorsteps! The first day I finally made it that far I felt like I had really accomplished something meaningful in my life.

Eventually, as the years went by, I noticed that his home and garden had fallen into quite a state of disrepair. I doubt Mr. MacEwan even noticed as it was usually dark when he would leave home and then again when he would return. Besides, he was always deep in thought about some kind of current issue affecting the greater community. I figured that he probably didn’t have magical night vision capabilities, no matter how skilled he was. Clearly he had a disability that needed compensating for, right?

Instead of just watching the place rot around him as so many people are apt to do these days, I began dragging our lawnmower over there regularly during the warmer months as well. This wasn’t easy since I had to lift it over the metal-pole stiles to get it through the back alley passageway – which was much better than going two blocks out of my way if I wanted to easily roll it down the street. This eventually became a somewhat lucrative form of advertising for me and several people along the way would ask me to mow their lawns for CASH! The idea of being paid for my services had never entered my mind before that. That summer I made over $800 and was able to put $500 towards our Scout group to secretly fund some less wealthy members to enjoy a big local Jamboree and I still had enough cash left over for that year’s early Christmas sales. I never asked Mr. MacEwan for a penny since I always figured that he had paid enough, and was still selflessly paying more with his continuing personal sacrifices.

I would see him nearly every morning for the next 18yrs as I stepped outside to collect our newspaper, or shortly thereafter, while I sat reading it. He was one of those incredible people who you could trust to be more reliable than the clock on the wall. Clearing the path for his success, humbly, became a minor adolescent life-mission of mine. He regularly thanked me quietly whenever he would walk by and I was in the act. One day he stopped in for a cup of tea and a chat to tell me he’d be out of the country for a while, and to ask if I would keep an eye on his home for him while he was away (as there had been a number of break-ins that year). My parents were the local Blockwatch Captains after all, but the job of maintaining all the communications, flyers, and call-outs usually fell into my hands so he came directly to me!

After some time alone in this service another boy I came to know well just showed up out of the blue and started helping me in the MacEwan’s yard one day while I was trimming some trees that had been damaged by a windstorm. He didn’t come up and talk to me about it or ask what he might do, he just walked up and put his hands to the task even though I’d never seen him before in my life. I’m certain that others in the neighbourhood noticed and pitched in over the years, too. The job seemed to get easier and the bags of yard waste I would cart away got lighter all the time. Nobody ever really said anything to each other about it, we just did it because it needed doing. The same as you should do for anyone you see in need, or anything you notice that needs doing.

One day I showed up to do the yard work and was shocked to see a whole gang of professional gardeners in the midst of giving the place a well-needed facelift and prepping the house for a new coat of paint. I recognised my helper was one of them as he walked up to me. He said that they’d be doing all of the yard work for him with his Father's new company from now on and that I would only need to worry about the winter snow clearing. That’s when I started mowing lawns all around throughout our neighbourhood, since I was used to a certain amount of work. I tried to figure out who needed the help more and concentrated on our most elderly neighbour’s needs first.

Always clearing the path for Mr. MacEwan became just one of my regular things, like waving at friends, or walking to the store to buy milk. Then one morning as I sat at our dining table reading quietly and watching for him to pass, he didn’t. I read in the paper the next morning, with great sadness to discover, that his precious wife had died. The next time I spoke with him he told me he was going to be slowing himself down and doing other things, so he wouldn’t be catching the bus all the time like he used to, adding that, “You shan’t need to keep on shoveling snow off of every damned thing in the city anymore.” A very odd thing it was, to hear him use even the slightest profanity. He told me that I should do something else now - whatever I might enjoy a little bit more for myself for a change, while helping others too. He was sad, but at the same time he seemed a little bit freer than he had for years as he had constantly worried about his wife being on her own. It was getting home to his wife every night that made him always be in such a hurry as he walked by.

My services were no longer needed by Mr. MacEwan and I felt a certain amount of personal satisfaction knowing that I had not faltered in fulfilling the commitment I had made to myself, and doing what little I could throughout those years to make things easier for him in that small way. I rarely ever saw him after that.

On May 6, 2000, Mr. MacEwan received the Golden Pen Lifetime Achievement Award for literary achievements by the Writers Guild of Alberta. The award has only been given to one other person: W.O. Mitchell. He died a month later and was given a State Funeral in Edmonton, Alberta. (Thanks to Wikipedia and the modern Creative Commons that was inspired by scholars such as this, for providing information freely.)

What brought him to my mind recently and caused me to be inspired to write this passage was simply the mention of the Grant MacEwan University in Edmonton during proceedings at the conference I recently attended. Whenever I hear his name I feel a great deal of pride well up inside of me for him and what he was able to accomplish, not for what little we in the community had done to support his efforts.

I got a big grin when I started writing this and looked up a few dates on his Wikipedia page only to find a quote that I could clearly remember hearing him say more than just a few times. I easily drew his voice from deep within the mists of the past without any effort, to hear it repeating again this common mantra of his.

“If you’re awake, you better be doing something.”

…Damned good words of advice, if you ask my opinion.

I’d like to add to that, as Mr. MacEwan insisted one should always add something beneficial to the good works and words left by others. It should continue on by saying, “…to make our world a better place today.”

  

Conclusion

We must stop viewing the varied assistance we give to others as something significant which we are granting them in meager compensation for skills we believe they lack, and start combining the entire constellation of talents existing within us all towards the creation of a compassionate society built out of joint assistance and support for everyone. Then, maybe we’ll all be able to achieve our mutually intended greatness together. It’s also the way we may build a truly caring family out of the greater community around us.

It’s what most young boys used to do out of the normal course of social habit, not so very long ago.

BTW- It was Mr. Grant MacEwan who presented me with my Queen’s Scout Award. He also made it a point to attend a number of other important award ceremonies, silly little plays and other functions that I was involved in throughout my lifetime, and even visited me in the hospital on occasion as if he were a beloved member of my immediate family - which is something that I suppose he really was, on a grander scale of thinking. His legacy will not easily be forgotten.


Follow Up
“Colonel Grant smiled at me!” I said to my Mother when she got up that first day I tried to shovel the snow and clear his path. Looking back I can imagine just how confusing of a creature I was to her back then. I called him Colonel Grant because; I had always heard him called Grant within our ‘group’, and I knew he was previously a Lieutenant Governor but didn’t know the difference. He always carried himself with such strength and poise that I mistook it for a military man’s affect. I don’t believe that he was ever in the military and see no reference to it in his online biographical references. That doesn’t mean he didn’t have a military life since many people who were drafted into service during those times would rather forget their experience to the point of refusing to acknowledge it. He also looked a bit like Colonel Klink from Hogan’s Heroes to my childish eyes. So, therein lays the source of my childish misconception. For the ensuing history of our interactions I always referred to him as Colonel MacEwan in our ‘group’. When he was coming into the clinic for an appointment my Father would tell me, “The Colonels coming in today.” or some similar variation on that theme. I also seem to think that there may be an error in the data from Wikipedia regarding the date of his eventual demise – Hmmm… wish I had time to check into it, but I’m awake and there are some things that I’d better be doing instead.

Sensory Issues: See Hear I Say

How does the world around you appear? Is it calm and simple? Do you notice the screaming of the Terror Beetle*, or is it simply lost in the drowning out of sensory stimuli that surrounds you? Well, to some people the slightest and most seemingly innocuous environmental signals seem like freight trains roaring through their heads. Thankfully, I am not one of those people… well, maybe at times I have been acutely aware of such things (Sarah has taught me to be more aware of MY needs for limiting sensory input at times). Anyone who suffers from migraine headaches (or strong hangovers) can attest to the perceptual changes which are possible through differences in brain chemistry. Some structural brain differences have the effect of ‘hard-wiring’ that mimics similar chemical alterations.

Many people who have been affected by pre-natal exposure to alcohol, drugs, and other environmental insults (and sometimes sociologically related physical ones) have brains that have been structurally dis-morphed** towards sensory sensitivities. Some of these sensitivities are based upon misconnected neural ganglia (cross-wiring), disconnected neural ganglia (unwired), otherwise physically altered neural structures (mutations), and entirely missing neural structures. One of the greatest processing problems occurs in individuals with insult to the corpus callosum (band of nerves connecting left & right hemispheres of the brain). This callosal** (hehehe) difference is prevalent within individuals who have been affected by fetal alcohol exposure. I have noticed with Sarah that sometimes I can ‘see’ her two minds fighting with each other for dominance of thought (and even dominance of physical action – left/right hands battle for control of objects) much similar to the effects seen in people who have suffered from strokes or other injuries affecting this critically important sub-organ of the brain. Left-right hemisphere comparative continuity is primary to our perceptive awareness. With Sarah, the effect can seem so pronounced as to mimic a multiple personality disorder at times (n.b. MPD may NOT actually exist but be a misinterpretation by psychologists who wish to stretch their knowledge to fit what they believe they are ‘seeing’ – a subject for another day [confirmation bias]). This is one of the biggest things affecting Sarah’s ability to follow verbal directions when being assisted in physical-spatial tasks. I can tell her to pick up that red ball, she can see that red ball, but the battle for left/right perceptual and physical dominance prevents her from proceeding through the functional process of committing the action and actually bending over and picking up that red ball. Unfortunately this is one of the most likely functional difficulties that caregivers may perceive as being willful disobedience.

Sensory perception issues in those affected by pre-natal exposure to alcohol*** can be the most pronounced disabling condition that affects them. I know that this is the case for my wonderful and loving daughter, Sarah. She intellectually fights against her more base urges to react to sensory issues, constantly. She also tends to be the most self-deprecating in regards to this phenomenon. If only she could see the fact that her difficulties are not what make her who she is as well as I am able to.

Anyone who wishes to experience just what a sensory processing disorder feels like for themselves should try taking a massive dose of any hallucinogenic drug available. I would tend to direct you towards something like mescaline or scopolamine or any other strong alkaloid amine compound for the most analogous experience as they have the primary additional effect of manifesting profound physical awareness changes. NO, I haven’t spent my life exploring these effects personally, but would not rule out the controlled experience for those who may need to increase their personal awareness of their patient’s experiences. There are several medically supervised opportunities for such experience available throughout the world. A far easier and less dangerous example is available, although it is not without it’s own dangers.

I provide here for your experience one of the best film productions to date that I believe is most analogous to a sensory processing disregulation** disorder. I must stress the caveat that anyone observing this video needs to ensure that they are NOT likely to suffer from such disorders as; migraine, epilepsy, paranoia, or schizoaffective disorders before embarking on this sensory voyage. Beyond any tendency towards medical predispositions included in that warning, I challenge anyone to watch the entire video without looking away or closing their eyes to shut out the overload.

There, not very pleasant of an experience is it? Imagine if your entire life was filtered through such a disjointed and jumbled perception. Now you may be more aware and sensitive to what people with sensory processing problems (and many animals) see the world to be like. There is a related psychological phenomenon which many people have documented their own experience of upon their first exposure to a large modern mechanised city (name??? it is mentioned in related articles documenting Terror Theory, but I will leave that with the reader to explore themselves). I can relate to the overwhelming effect some immigrants to North America must have felt upon rising out of the depths of the bowels of passenger ships as poor peasant farmers (who have never seen a building larger than three storeys tall) upon their arrival to the New World at Ellis Island. You think you’ve had a hard time adjusting to jet lag or culture shock? I bet you can put your experience into better perspective now.

Please remember this video whenever you are next dealing with a seemingly altered individual. I just wish that I could educate all of the trigger-happy police in this messed-up modern world we live in of the effects related to this phenomenon. Maybe I can hope that one day some who desperately need this knowledge may read this obscure and pedantic Blog of mine. I gave up educating others to the unique special needs of individuals like my daughter when I walked away from the public school system (ran away screaming, actually). The past 4 years of Homeschooling have been the most beneficial accommodation I have discovered for Sarah to date.

Conclusion

There are medications available which can modulate the worst effects of people’s responses to sensory processing disregualtion**, but none that can modify the actual sensory effect itself. Most of these medications are neuroleptics which aren’t exactly the best adjunct to clear minded thinking and carry further stigmatising side-effects. In some patients who have the most severe intellectual problems which prevent them from ‘knowing’ what their own problem is (and therefore self-regulating), chemically restraining medications may be necessary to ensure their personal safety in our loud and haphazard world. The extreme startle response to external stimuli could easily lead to life-threatening scenarios (always consider the worst case scenario when establishing care guidelines for individuals). Sarah tends to wish to bolt and run when she is startled by motor vehicles. Unfortunately her tendency is to run directly into the path of them, or in the opposite direction directly into the path of ones traveling the other way. Not a good scenario for navigating busy city streets (or even not so busy ones). Thankfully her intellectual abilities have been nurtured to the point where she is able to override some of her fear responses. Anything which could possibly dull Sarah’s intellectual abilities would NOT be a good match to her specific needs, and could possibly prevent her from honing those abilities to perfection (or near) in her future. Sarah has suffered many insults due to the misapplication of substances and medicines (her mother kept her on high doses of benzodiazepines for the first year of her life). I will always strongly resist the use of any further medicinal insults to her developmental health. I realise that this may conflict with some current medical advice, but am more than willing to sacrifice myself in any way possible to avoid turning to easy answers like drugging her into compliance with what WE may perceive as the ‘norms’ of human experience.

I would like to mention here the worst and most deleterious effects preventing the establishment of effective accommodations for neurodevelopmental diversity. They are inherent within the Occidental historical foundations of modern science and medicine. Medical science is a Masculine profession. Masculine people have a tendency to want to fix, repair, and otherwise eliminate perceived problems through the liberal application of behavioural, surgical, and chemical intervention. This is usually NOT the best way for affected individuals to experience their lives. Comparatively, there exists a Feminine tendency to wish to wholly and completely nurture and accommodate differences. This is usually NOT the best way for affected individuals to experience true growth in their character which would allow greater achievements and increase the richness of their life experience, either. Again, what would seem a more viable path to follow towards enrichment is the melding of the masculine and feminine into the compassionate and responsive agglomeration of the two extremes in that spectrum. I know it sounds like an all touchy-feely, yoga posing, wheatgrass munching, hippie fried freak, universal love approach, but what’s so wrong with that - if it works? It’s kind of a Zen thing, I guess.

“I don’t mind the Sun sometimes, the images it shows. I can taste you on my lips and smell you in my clothes. Cinnamon, and sugary, and softly spoken lies. You never know just how to look through other people’s eyes.” – The Butthole Surfers: Pepper. 

Daily Schedule

Sarah went to sleep around 5:30am today, she averages 10-12hrs sleep a night and will therefore be awake by 5pm’ish – just in time for supper as breakfast. I slept till 10:30am myself [5hrs seems about average for me]. This is going to be ‘one of those days’ wherein my clock hasn’t been able to leapfrog to meet Sarah’s, so I will be experiencing many manifestations of sleep deprivation later in her day. I hope she is in a state similar to that of the past few days and can afford me the accommodation I need to be able to make it through intact. [What was it that Janis Joplin taught us about the fact that it’s really always the SAME day anyway?]. I somehow doubt Sarah will be much help as she was experiencing perceptual alterations near the end of her day yesterday. She has always shown extreme empathy towards me when I am ill. The first time Sarah brought me her comfort blanket when I was lying on the couch feeling sickly I nearly broke out into a sobbing fit – but that would have been the wrong signal to return for such a wonderful gesture.

****Update: Sarah awoke at 4:45pm and appears to be headed to a moderately functional day with little problem in morning chores. That can change quickly, though. I need a better word to use than ‘day’ since hers is NOT one and ‘waking period’ just sounds silly.

Mood: Happy

Activity: Blowing bubbles on the balcony

Problem: Sensory – clothes, shoes  (Sarah would prefer if the entire world were a nudist colony)

Homeschooling Win

I feel compelled to share this with someone – Sarah loves Monster High. She has an uncanny knack for making socially relevant connections I overlook. Last night she tried to express something to me which we had great difficulty communicating. It was something she found to be a profoundly amusing little punny joke about the relationship between Cleo de Nile and her boyfriend Deuce Gorgon. She found the fact that they are ‘lovers’ to be amusing because he is the son of Medusa and has snakes for hair. I didn’t get it, the literary historical significance was completely lost on me at the time (I blame sleep deprivation – my favourite real excuse). After playing vocabulary-roulette for a bit her extreme efforts to enlighten me paid off and I felt a fool for not seeing it myself. The amusing historical fact is in relation to the story of how Cleopatra (Cleo de Nile’s mom, committed suicide by the bite of an asp, and therefore Cleo should be afraid of Deuce.) Incredible! I was able to further discover that her knowledgeable memory of this historical event came from watching a documentary about the rulers of Egypt last summer, as far as she could recall. WOW! I made it a point to thank her for teaching me, again.

Breaking Barriers

For anyone interested in disproving prejudices about freaks like me… I am often viewed as a hippie due to my long hair. This is an incorrect assumption. I am fiscally conservative, prefer hard-core heavy metal music that would make most people develop some of the sensory issues mentioned here, prefer hard science over existential philosophy (a close race), and often enjoy gardening and the simple pleasures of closely examining flowers. That does NOT mean that I don’t also greatly enjoy many other less radically harsh forms of musical entertainment. As a matter of fact, my most favourite musical style to play in is free-form stylised Jazz (when my arthritis cooperates, which isn’t often anymore). Stereotyping people by what we perceive them to be by way of their outward appearance demeans ourselves and limits our chances of personal growth.

NOTES

*Terror Beetle is an obscure literary reference to a no longer used term for a group of beetles that live on the Japanese Islands. They are loosely related to the more commonly known European Deathwatch Beetle, and the various Hissing Beetles of other regions. Sorry, but I can’t take the time out right now to seek references to it. If you find anything about it, please inform me. (I apologise to my Entomologist friends for the gaps in my knowledge on these species). Synopsis; The terror Beetle is a group of ‘screaming’ beetles that reside throughout the Eastern Pacific Islands. They are actually made up of three taxonomical sets (using recall of old information references c.1800’s, so please forgive any mis-steps or gaffes). No, they don’t actually scream. Some highly sensitive people can hear their mating/distress call and perceive it to be a haunting plaintive wail that seems to emanate from within their own heads. This proves rather disconcerting to anyone suffering from sensory issues or sensory-sensitive(?) mental health problems. It is often referenced in poetic passages from historical Japanese texts, as well as being given some light treatment by a certain few British and French pirates who ended up being isolated on deserted islands. There are plenty of references to what isolation does to pique a person’s sensory awareness and sensitivities, so I shan’t bother explaining them here. If you want to know more, seek information related to the long-term effects of Sensory Deprivation. [[I was amused to find no reference related to the correct use of the term ‘pique’ within the Digital Encarta English Dictionary. I’m not surprised though, since it IS an Americanised volume of work which often gets things mixed up, completely wrong, or attempts to creatively re-write historical fact. I can’t be bothered to chase after every misinformed professional out there…]]

**Isn’t the English Language a beautiful and ever changing creative thing? There is something unique about English which makes it not just able to accept creative taxonomical alterations, but requires this phenomenon at the core of it’s definition. Having followed my Mother in her later pursuits in ESL, I was made acutely aware of the fact that this is THE biggest difficulty people have in taking up English as an additional language not native to them. If you have been able to additionally learn English, then you are also acutely aware of the difficulties faced by Developmentally Disabled people in trying to understand such literary phenomena as; idiom, pun, onomatopoeia, sarcasm, dual sense (meaning), homonym, et. al.

***Thank you Mr. Dan Dubovsky for championing the need to stop naming/labeling the patients as their condition. I struggle at times to avoid using the sic term FASD’ers, but enjoy being wordy so usually find myself able to happily accommodate the lexical difference.

Language: Good, Bad, and Ugly

Elitism dictates that certain vocabulary be avoided in favour of confabulated and baffling techno-speak. The main problem with this phenomenon is that professional practitioners in most fields often find themselves unable (or unwilling) to lower themselves to using familiar language that is effective in expressing difficult abstract concepts to lay-people. The lay-people in question are not unintelligent, but rather uninitiated in the bafflegab of the specific trade or field in question. How does one express higher concepts particular to a complicated subject to someone who has never even heard of the discipline involved in the first place? (Let alone being (un)lucky enough to possess deep understanding of the vocabulary.)

Most professional organisations, associations, and ‘agencies’ strictly enforce specific guidelines that dictate the way in which they wish their members to retain jealous control over their particular discipline. From burger flippers to astrophysicists, this evil cancer to enlightenment is employed to create an ‘esprit de corps(e)’ supposedly necessary to the successful retention of cohesiveness under the guise of community. Arrogant professional self-interest should never come before that of the community being serviced. And, in a perfect world I would be a few inches taller, less abrasive, and gorgeously handsome. Not that I don’t already wow the ladies with my debonair personal presentation.

“Carburetors, Man! That’s what life is all about.” Comes as the hook-line to a song from the movie "Phantom of the Paradise" which I was privileged to see at the age of 8yrs old when it debuted in the Saturday Matinee at the Odeon Theatre in Calgary in 1974 (between their normal regular showings of crappy pornographic movies. I remember the creepy men in trench coats that would hang around that place in the evenings quite clearly [poor guys]). Oh, what a brilliant and enlightening time the social experiment Canada was back in the 70’s. I’m so grateful that I wasn’t cursed to grow up in the ridiculously flamboyant and plasticly hollow 80’s, or worse, the repressive 90’s (I haven’t quite had time to digest and judge the 00’s, yet).

Why carburetors? The reference within the song implies that one should only concentrate upon the complexities inherent within one’s own domain of knowledge. Paraphrase; “…don’t even try to think about what anything really means on a deeper level, or get involved in the complexities of issues outside the stuff that you enjoy and feel safe within (in this case motor mechanics), because your efforts will surely be wasted and it will only lead to confusion and sorrow in your life…” The deeper ‘between the lines’ meaning to the person this was said to (who becomes the Phantom in question) is revealed as the insight that the true value in life is to be found within the complex interplay between the elements that are mixed by the carburetor being able to produce an expression of energy that can then be put to positive use for the entirety of Humanity.

We as individuals are only truly valuable in what we manage to add to the overall mix of human experience throughout history. A further lesson I gleaned from this important life experience of mine was that everybody needs a Satanic Record Producer to champion against. So, don't berate those who do evil too much - for without their continuing negative actions crusaders for truth and justice would have no target to foment their rallying cry to arms against. (I really wish I had the time, capacity, and opportunity to delve into the varied philosophical arguments this brings up regarding the necessity of evil[-doers].)

What does any of this have to do with social language, or the language of Developmental Disabilities? It reflects some of the stereotypical attitudes and behaviours of the Elite Professionals who are active within the field. There is a propensity for the God-like ‘Knowers’ to look down their noses at affected individuals (either patient or caregiver) as if they are so far below them that there is no hope of ever instilling understanding, so every effort towards explanation is surely futile and should therefore be avoided. It also reflects the attitude of several affected individuals to avoid even trying to understand the bafflegab involved. Both trends lead to division and enforce a lack of understanding and empathy between the two diametrically opposed groups, when what is really needed is a melding of the two sets. Professionals who arrogantly and erroneously think that they “Get It” tend to talk down to patients and caregivers that they have immediately and prejudicially deemed to be incapable of deeper understanding. Rather than lowering the complexity of their communications, it would be far more beneficial to raise the level of understanding of the listener to then be met part way between the two extremes.

If we automatically reject the more common vocabulary that is filled with colourful and descriptive language, then we limit our own ability towards understanding. Having grown up with a Mother who was a consummate Special Needs Teacher with a masters in linguistics, a member of the elite Delta Kappa Gamma Society International, and a devoted caregiver to sometimes terminal special needs foster children, I learned the potent weapon that words can be, and above all else what compassion really means. Even Shakespeare suffered censure regarding the offensive language that so often appears within his most masterful works (at least, those attributed to him). Can you imagine telling Stephen Hawking that he isn’t allowed to swear because it demeans his work? I didn’t think so.

((As an interesting side note; I had the wonderful opportunity to meet, speak with, and be inspired by personal encouragement from the consummate Human Developmental researcher Dr. Ann Streissguth, at my Mother’s entrance ceremony to DKG, as an adolescent. She even made it a point to follow [and influence] my progress throughout my educational experience, since I have always suffered from the disabling effects of possessing a sickeningly high IQ [what an arrogant and self-promoting name dropper, eh?]. As I eagerly consumed every document available to me in my lifetime I was always able to put a face and a voice to the texts written by Dr. Streissguth due to having met her, which added a certain ‘alive’ quality to my self-taught lessons. *Further name dropping shall occur throughout my discussions as I have been privileged to meet and know many researchers, artists, and public figures in my life experience – Temple Grandin made a HUGE impression upon me and personally guided me towards a better understanding of animal’s behavioural needs when I met her through my Father’s Veterinary work at the Calgary Zoo, et. al. A more obscure reference to people I know deserves mention here; I grew up knowing, interacting with, and respecting T. Lobsang Rampa and his much more loveable [and seemingly more sane] wife, Mama San Ra’ab Rampa, who always reminded me of my paternal Grandmother and greatly enjoyed and respected how I would treat her to a proper British course of tea and biscuits whenever she showed up at our primary Vet. Clinic with her entourage of feline friends. Mrs. Rampa felt so attached to me (and our family) that she directed many financial resources towards supplying me with goofy tech gadgets, communications devices, learning materials, and artworks that I would have NEVER been able to own without her incredible generosity. She even wrote a few positive and life affirming passages about me in one of her books [the title escapes me at the moment].))

More to the point of this Blog…

The first time that Sarah said, ”Fuck you!” to me I got the biggest shit-eatin’ grin that I can ever remember. Why? Because it meant that she finally got what it meant to be able to feel free and self-empowered enough to stand up for herself in the face of ultimate authority. By the way, Sarah was around 4-5yrs old when this happened, and it wasn’t done in anger but rather came out during a stiff oppositional argument regarding the imposition of my will over her personal desires (and possibly what She needed at the time that She knew was best for her). My deep affection and love of her personal character grew by leaps and bounds in that moment. I became a little bit less scared of what might happen to her in her life knowing that she wasn’t afraid to scream out NO! if somebody ever tried to unfairly inflict themselves or their prejudices upon her. A moment of true fatherly Pride.

The following 3-4yr old video is an example of Sarah’s propensity to correctly employ colourful euphemistic language. It bears no other relationship to the topic of this Blog entry.

I have also recently experienced another moment of Pride, somewhat more important to my Single Father status. During the past week of turmoil involved in striving to attend the ‘Conference’, Sarah has been experiencing her first proper menses. The fact that, other than increasing her emotional volatility, the event itself carried NO surprises, shocks, fears, or difficulties in management speaks volumes towards the value of pre-arming children to handle life’s most tedious and troublesome events that we like to refer to as growth experiences. It was nothing big to her at all due to the previous lessons we have engaged in which have involved biology, physiology, reproductive issues, and Sarah’s ownership over her own body and life experience. Although severally given the choice to engage women we know in discussions related to women’s sexuality and biological processes, Sarah has always insisted that she only wants my involvement.

Conclusion

Language is a colourful and ever changing reflection of ourselves and our own personal attitudes towards the rest of the universe. What does Your language reflect within the bounds of practice you have chosen to limit yourself to?

Course descriptive vocabulary; If you don't like it… well I think that you can imagine how I must feel towards you - or at least the language I would likely employ.

(This one was partly for you Miranda – not to offend your sensibilities, but to amuse your tolerance [which you have always displayed admirably – especially back in Junior High School when we first became friends].)

NOW… time to go wake up Sarah and face another sleep deprived, stress filled, grey and rainy West (wet) Coast day without sunshine. I hope she wakes up in the hyper-educationally aware state she went to sleep in last night (wee hours of this morning actually).

(((Favourite Podcast - - - A Gobbet o’ Pus)))

“Whatever happened to ‘Saturday Night’? When we did the Bump and felt ‘All Right’. It don’t seem the same since Cosmic Light came into my life. I thought it was Divine.” Rocky Horror Picture Show – Eddy (a.k.a. Meatloaf).

((***Follow Up: Sarah awoke in a positive mental state, and began her day by reaching for the very difficult brain teasers we were working on last night before bed. It’s interesting as they are directed at an average Adult intelligence and definitely NOT what one would expect an adolescent with difficulties to be attracted towards. Her performance on the items last night was admirable. BTW – Sarah insists that her favourite subject is Science. Maybe that’s just because I become so animated when it comes to providing descriptions of scientific principles and the proper application of Scientific Method.))

Social Justice: Not Just in Theory

It’s a Matter of Justice: UBC Inter-professional Continuing Education’s - 5^th National Biennial Conference on Adolescents and Adults with FASD

WARNING: There are a few instances of Extreme Language within this entry.

Attending this event was the most helpful, interesting, empowering, and life-affirming event I have experienced in the entire span of my experience as a Special Parent in Training. I extend my deepest and most sincere gratitude to everyone involved in the execution of this event, especially towards those semi-invisible players who made it possible for me and several other Parents and Family Members of affected people to attend – not to mention those responsible for their financial assistance (as well as the ancillary staff of the Vancouver Hyatt Regency Hotel). The most profound input came directly from those precious few successful affected people in attendance brave enough to boldly show themselves to the other attendees – they humble us all.

 

The educational sessions were all effectively presented by dedicated and learned individuals and groups who don’t just care, but actually “Get It”. Dealing daily with the billions of people in this world who don’t “Get It” makes this demographic far more poignant. My personal highlight of the entire event was that a wonderful woman who has been diagnosed with FASD allowed me to provide her with assistance on several occasions throughout the three days of the main conference. Her strength of character and perseverance in the face of adversity that has existed throughout her entire life bore witness to why I’ve always been involved in helping others – “…because it makes a difference for this one”. Thank you “S” for demonstrating just what inclusion is supposed to feel like by extending that gift to me.

 

I won’t be addressing the specifics of any of the educational sessions that I attended at the event in this particular blog entry, but will hopefully be able to pass on what knowledge I received in future entries. Instead I shall be addressing some of the difficulties I experienced in endeavouring to attend the event and the emotions that were dredged up by these minor adversities.

 

Due to my daughter’s sleep differences I began working towards being able to attend this event over two weeks ago. The need to have Sarah on a nearly “normal” diurnal schedule was paramount to the success of her staying with my elderly parents during the four days of my attendance, and overnight for the 4 nights involved. Sarah understood just how important this event was - not just to me personally, but to both of our future success’. Sarah demonstrated her strength of character throughout.

 

During the first week of sleep schedule alteration Sarah had numerous extreme behavioural outbursts. Although her bedroom door has been damaged, it remains functional and will stand it’s expected performance for some time to come. Apparently the neighbours are used enough to her rages that they seem to have gone unnoticed. I guess I’ll find out over the next little while whether we’re still as welcome as we always have been in the building. Beyond this collateral damage; my bruises will heal as they always do, and Sarah will learn to forgive herself in the same capacity as I do… eventually.

 

The sleep deprivation I had to endure leading up to and throughout the event to facilitate my attendance was, for the most part, comparatively inconsequential as well as being more minimal than what I have previously experienced. I did experience a moderate stress-induced neural event (full-body myoclonic tremor) during the Friday session, but thankfully had with me the anticholinergic medication that could stop it as a normal course of my medical maintenance regime. For anyone interested; the drug in question was 10mg. Buscopan (Hyoscine Butylbromide), which is nowhere nearly as effective a treatment as the newer analogue (Hyoscyamine a.k.a. daturine) which is no longer reliably available. The difference in efficacy between these two drugs is intrinsic to their molecular properties and not just due to the longer onset of absorption caused by Buscopan’s enteric coating. It always surprises me as to what extent medical professionals are willing to forego effective treatments in a vain attempt to avoid the possibility of substance abuse.

 

I was not only required to endure the sleep changes due to the normal course of events, but additionally had to deal with placating Sarah’s (and my Parent’s) insecurities surrounding the changed environment. After each long day of attendance (including two night sessions) it was necessary for me to lay with Sarah in aid of coaxing her to sleep (11:30pm) before being able to finally go to our apartment, kick off my boots, and prepare paperwork etc. for the following day. I still say that nothing feels more satisfying than removing sweaty footwear after a long day of productive work (well, maybe a good bowel movement can compete with that at times). In the end it turns out that I managed on 3-4 hours of interrupted sleep nightly. This will cause some problems for me in the coming weeks as I am now keyed to my “normal” diurnal physical urge to be up with the sun. This will inevitably conflict with Sarah’s needs and I will experience further sleep stress to accommodate her over the next while. It has always intrigued me how this divergence of sleep patterns seems to mimic the differences seen in the astronomical effect of diurnal parallax. Sorry if I continually divagate into seemingly unrelated scientific paradigms, but I suffer from a wide exposure and find it necessary to the facilitation of adequately expressing myself. (Hmmm… could I be more wordy if I tried?)

 

I can see this entry continuing ad infinitum if I don’t attempt to wrap this up. Parts of the following have been gleaned from text messages et al.

 

**text to Ruth
 

What are the odds????

 

Just to confirm that my life is actually the dream of some demented cosmic joker - as the conference was winding down I began to get teary and felt depression welling up inside of me because now this wonderful 700 strong personal support group I've been blessed enough to be part of for the past 4 days was about to vaporise into thin air. I kept pumping my "good place" and steeled myself to face the ride home like a STRONG Man. I decided to quickly slip out and get home in a jiffy so I could collect myself before going to get Sarah. Parting scene; the crew of the closing celebratory dance number in the midst of group self-support. A good time to head down the escalator. On my way I have a couple of parting words of joint encouragement between myself and the generous, Dr. Rob Densmore. Good ending.

 

I did my first 1 stop train transfer and got onto the main train home early enough to get a decent seat right away. I managed to avoid the rush I'd faced every day previous wherein I had rude and bothersome commuting experiences with no respect given to my crippled state.

 

Doors close, train rolls, the next stop comes, doors open, and who should be the first face I see entering looking straight at me... Sarah's mother.

 

Having not seen or heard from her in 5yrs I had to ensure I wasn't just hallucinating due to the intense emotions I was experiencing and paid attention to where she sat down. Well, the crowd parted and it WAS her. There's no mistaking it. I've known her since she was 4yrs old. She glanced up and immediately strained to avoid eye contact. I felt anger begin to well up inside me to quickly be replaced with a terror of panic I haven't felt in years. What to do? Be calm and cool? Ignore her? Say hello? Hmmm... What had Mr. Dan Dubovsky said in closing about Social Justice and treating others not equally, but fairly? I decided to just try to catch her eye and be kind. We finally arrived at the terminating stop and she quickly left the train so as not to have to acknowledge me, heading for the stairs. I went the other way towards the cripple elevator that has been such a Godsend. I paused at the top of the stairwell to watch for her and maybe make eye contact. Yep, it was her alright. Avoiding looking up at the big hairy me standing there that everyone else was eyeing. I guess she wasn't ready to 'see' me, ok. I waited a moment to allow her ample time to avoid imposing myself upon her any further. I took the elevator down and s-l-o-w-l-y walked to where I needed to catch my bus. All the while still mentally twitching about whether this was actually happening NOW of all possible moments.

 

Sitting down on the bus my head was swimming in the statistical calculation of the probability of such an event occurring NOW, today of all possible days. Profound barely covers the odds involved.

 

I tried calling Gerri to see if I could stop in for a moment and decompress, but only got her answering machine.

 

On my own for this one.

 

Cosmic test.

 

So, here I am texting you, Ruth Anne, knowing you are camping and probably not going to see this till tomorrow. You ARE my life-line right now. Fulfilling the role by the mere fact that I AM texting you for later. :)

 

You fucking ROCK, Doll. I love you and am soooooooooooooooooooo grateful for our connection.

 

Thank you Ruth Anne.

 

Don't worry about what my state may have been right now. The connection worked. There are tears hanging in the corners of my eyes, but I am OK! They are way smaller and far less significant than the ones that kept leaking out at the conference when I'd think of Sarah's strength and the love and caring pouring over all of us attendees from ourselves. I am going to check on my owl right now and then I'll start to think about collecting Sarah from Grandma's in a little while.

 

Loki, you bugger!

 

Trickster must work harder if he ever expects to trip ME up! B-)

Warning: Don't follow this link and listen to it if you like good music, or hate foul language.

http://soundcloud.com/that-hairy-canadian/2012-04-21-18-55-01

Music? Hmmm... Can I call it that?

 

As I was editing this poor quality recording to send your way, screaming, yelling, banging, bashing - thumpthumpthump on my door! Sarah in a horrible state! I haven't seen her this upset in ages. “Please don't yell at me”, she pleads. “No dear, I won't do that.” “What happened?” I ask. With some coaxing and hugging and assuring she tries to speak, but can't. I ask if anyone is hurt, “no”. The short answer is Pappa yelled at her and scared the fucking shit out of her. She panicked and ran to our door even though she hadn't been told I was home.

 

Loki didn't like me taunting him =)).

 

Phone rings, it's Grandma. I don't say hello, but "She's here." Gran tries to explain, I say I know and it doesn't matter. I beg off right away to get back to Sarah. Owl must wait.

 

After some work she's lying on the couch with a few good stuffies under a blanket and calming down. “I'm worried” she says. “About what?” I ask. “Shrek” “Don't worry too much he will be just fine, they won't do anything to harm him.” I must run over and get him now.

 

Sheep go to heaven and goats go to hell and shepherds must sacrifice themselves to ensure that more goats get to be counted as the sheep they really are inside. You can quote me on that. At least I don't think I heard it before. :p

 

Off to collect an ogre now.

 

Later Ruth – I’m on duty again. :]xx

 

…

 

REPLY

Jamie, my phone is almost dead. I can feel what you just wrote in the core of my bones. YOU are incredible. I don't know what to say besides I am here and I understand you. Will talk to you tomorrow when I have my phone plugged in. Jamie Randall....... wow....

 

((Follow-up: Today when Sarah awoke, she had no recall of the problem she had from being frightened by Pappa last night. Sometimes anterograde amnesia has an upside. I do worry about the cumulative effects of the repetitive cortisol cascade her body experiences – a major component in establishing the cognitive patterns of PTSD.))

**call returned from Gerri
 

Gerri was very worried about how I was. Mostly, she was concerned that something could possibly have happened to harm Sarah. Good neighbours/friends are incredibly hard to come by, and worth far more than could ever possibly be expressed. (Remember to be one as often as you can.)

 

I quickly put Gerri’s mind at ease and explained the stress I had wanted to decompress from was due to having seen Sarah’s mother on the train, and that the moment of greatest need had passed.

 

As it turns out, Gerri has been experiencing far more stress herself. Her sickly mother had finally been transferred from Richmond General Hospital (against better judgement, advice, and common sense) to Fraserview, a local long-term care facility. Naturally, it had ended with an ambulance ride back to the hospital due to the intrinsic failures of crappy care at Fraserview. Out of respect for privacy I won’t go into specifics.

 

Gerri is incredibly stressed as she is forcing herself through the physical strain of trying to compensate for the lack of adequate nursing care by attending to her mother’s bedside needs personally. She hasn’t been eating or sleeping properly and needs a little bit of support herself. I offered to include her in the fish and chips dinner I am cooking Sunday, but she declined as she isn’t certain when she may be back in the building. I’ll check back on her later then.

 

**conclusion – it’s a small world

 

During conversations with several of the other attendees to the conference, the subject of it being a small world came up. Mostly this was due to the fact that we had come here from places we all had some type of previous connection with, in the sense of caring for others and thereby creating immediate benefits for ourselves.

 

It really IS a small world. We may be large in number at 7 billion (or so) individual human beings upon this planet, but we are all intimately connected with each other – not just by familial ties. There is a certain amount of interdependence that we must foster and participate in. Not just to ensure our individual survival, but also to enhance the situation for those who may not be as capable as each one of us feels. This will help to strengthen our survival as a species.

 

There is no simple and easily applied definition of what levels of neurodiversity are best suited to providing the help we each need. Some people who may view themselves as being at the lower end of the intellectual/functional spectrum feel that they are not able to provide proper help to themselves, let alone anyone else. They must be informed of the richness and necessity of their diverse contributions. What they may see as being not worthy of mention in their abilities and efforts are actually some of the most important core supportive skills available to humanity.

 

Not only is there a need for universal inclusion, but there also exists the need for each and every person to do whatever they are capable of, whenever they are able to.

 

The more we practice extending ourselves beyond what we believe we are able to, the more likely these skills are to become intrinsic and instinctive parts of our own personal characters.

 

When our first reaction to the sight of adversity is an instant urge to join in with our personal skills in any way possible, everybody on the entire planet benefits from the slightest positive action we may engage in.

 

We owe it to everyone else, and we owe it to ourselves.

 

It’s a Matter of (Social) Justice.

 

"Thank You" – Led Zeppelin

If the sun refused to shine, I would still be loving you.

When mountains crumble to the sea, there will still be you and me.

Kind woman, I give you my all, Kind woman, nothing more.

Little drops of rain whisper of the pain, tears of loves lost in the days gone by.

My love is strong.

With you there is no wrong.

Together we shall go until we die.

My, my, my.

An inspiration is what you are to me.

Inspiration, look… and see.

And so today, my world it smiles, your hand in mine, we walk the miles.

Thanks to you it will be done, for you to me are the only one.

Happiness, no more be sad, happiness… I'm glad.

If the sun refused to shine, I would still be loving you.

If mountains crumble to the sea, there will still be you and me…

(In the context of this song, ‘Woman’ represents the positive life force, often incorrectly referred to [in the literary sense] as Gaia. According to an interview I saw many years ago - the authors, Robert Plant and Jimmy Page, originally meant it in this sense. This song pays homage to Earth.)

*** Update: I have come to remember that the day I saw Sarah's Mother on the train would have been on Her birthday! Now I must redo all of my statistical calculations of the probability with the addition of this new variable. I bet it wasn't the best thing She could have experienced on that special day.