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.))

Change: The Scariest Word

The idea of change terrifies Sarah.

Speaking to her about changes that are going to occur is nearly impossible. Even speaking about what changes she may want, causes intense distress. I’m speaking literally about any and all changes. Changing activities, changing clothes, even changing directions whilst out for a walk.

It seems that Sarah’s fears centring on speculative changes are based upon her fear of the concept of future events. Sarah experiences intense fear when faced with concepts she can’t understand. The main functional concept in change is that of time, and Sarah does not comprehend the passage of time - she has no sense of it whatsoever. Poor recall of past events and variable anterograde amnesia prevent Sarah from being able to project her concept of self onto past or future scenarios.

There is only now as far as she is aware.

 

The idea of now has always intrigued me. The concept aligns with several existential philosophies and scientific theories that refute the existence of time, or imply that it is static.

Briefly; there is only now because time does not actually exist, it is merely a concept created by humans to understand the damage caused by radioactive decay and toxic substances which inflict the depredation of aging on living tissue thereby limiting lifespans. Radioactive particles from background cosmic radiation cause damage directly to DNA as well as the DNA-repairing mitochondrial bodies. When the mitochondrial bodies are damaged to the point where they can no longer repair/replace the damaged DNA, cells begin to fail in their maintenance of bodily functions and death occurs. If there were no damaging radiation (or other substance), then we could conceivably live forever [barring accidental injury and disease].  ((Radio-isolation experiments with plants and animals have produced results indicating that this may be the case. Although, to date they have all failed due to limitations in the isolation systems causing disease conditions related to the proliferation of environmental toxins and competing organisms.))

 

To say that Sarah is Cognitively Impaired, in the classical sense, would be incorrect. Sarah has always had a slightly above average IQ. In the now her grades on standardised daily work materials often average near an A- level (excepting math). Her intellectual perception and insight can be quite extraordinary at times. This intellectual strength does not translate into functional ability. Rather, the opposite is the case in that Sarah is acutely aware of the level of her Functional Disability. I believe that this may be what lies behind the majority of her self-injurious behaviours. The current commonly overused ‘Catch-All’ term that describes Sarah’s condition is Functionally Impaired. That covers a huge array of neurodevelopmental differences. It would be far better to describe Sarah as being Perceptually Impaired. The end result of this perceptual impairment is that only now can be understood in concrete terms. Speculative alterations on a partial perception of reality as it exists in any given moment are impossible for her to conceive. The act of trying to imagine the effects of something that one is not aware of the existence of (change), while it continually occurs around you, creates specific challenges.

 

 

BEHAVIOURS: A Brief Description

How can I explain my daughter’s behaviour to others?

If I speak with any kind of harsh tone in my voice, approach quickly or at the wrong moment, move my hand in her general direction, say or imply something she doesn’t like or agree with, she’ll freak out and start screaming as if she is in immediate mortal danger. Sometimes she will react with incredible hostility, stomping, yelling, swearing, or physically attacking me. Often even the slightest change in my facial expression can trigger her – a smile, frown, or grimace, whatever. This can happen at any time of the day or night and, due to her complete lack of circadian rhythm, often occurs at inappropriate hours (such as 2am). At other times she will freely engage in self-abusive behaviour in response to external stimuli most people would barely notice such as sound or light differences. It has taken years of extreme efforts to stop her from overtly inflicting physical pain and damage upon herself. Unfortunately, I became the ‘safe’ proxy target for expressing her rage towards. It was far easier to put up with her chewing on my arm than to bear the sight of her gouging at her own face. We’ve come a very long way since then.

I have tried everything I can think of to help her to manage her unrealistic anger and fears. I have spent endless hours researching all aspects of special needs accommodation in hopes of gleaning a paltry few workable strategies. I have spoken to doctors about the problems many times without ever managing to convey the full compass of issues involved. Everyone seems to feel as if there is some help out there as they have heard anecdotal tales of useful services being delivered, but they have never been able refer me to where I may be able to seek assistance. Programs that supposedly exist, don’t. Legislation that directs government agencies to be responsive to this population is openly ignored. Behavioural programs specifically exclude those with disorders related to teratogenic developmental brain damage, preferring to address only those with certain types of acquired brain injury.

Sarah is not capable of thinking clearly, ever, about anything. People tend to view these types of problems as stemming from some kind of parental shortcoming. This has been the traditional viewpoint – blame the victim(s). As if some deep character flaw within the caregiver has instilled the dysfunctional behaviours.

This situation didn’t come into existence over time, but is the way that Sarah has always been.

It goes from one extreme to the other. Either she is completely in love with the world and oblivious to every form of suffering within it, or she emotively feels the exact opposite and loathes everything entirely. The change can occur rapidly within the space of a single sentence. This isn’t bipolar disorder, rage syndrome, or any other simple singular psycho-emotional problem. Sarah’s spectrum of symptoms encompasses a multitude of similarities with many of the hardest to manage psycho-social disorders.

Her condition is not static. Once a routine develops and I think I know how/when/why her state will become dis-regulated, everything changes. Suddenly, one morning, her favourite things have shifted. The particular stimulus (sound, light, thought) which triggered her worst responses has changed. It can be very challenging to regularly wake up to a different child than the one that you put to bed. Constantly working to re-calibrating her environment to minimise negative reactions is an ongoing strategic game of charades. It’s a bit like playing a perpetual game of musical chairs wherein the seats are constantly being re-arranged and randomly added or removed, whilst blindfolded.

It’s a whole brain effect of the teratogenic organic damage that she has suffered from since before her birth and continued throughout her development to this day. The genetic damage was imprinted upon the earliest neural cells and every division has brought about haphazard structural differences at every stage of growth and development since.

I cannot change her. There is little or no therapeutic response to any type of medication for those who suffer from the effects of pre-natal alcohol exposure. She will not outgrow it, or miraculously develop the ability to live life normally. We face this reality head on, daily.

We don’t ask for a great deal of outside help. It would be nice to get some type of respite services, though. We could both really use a break from each other once in a while. I imagine that it would take a long time to brief anyone on Sarah’s specific needs. I am woefully aware that no qualified caregiver relief personnel currently exist, or are being trained for deployment anytime in the near future.

…One can dream, though.