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.
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