Into the rabbit hole... [Part 1]

So, I have spent a significant amount of time on this post and finally decided just to break it up into multiple parts.  "Into the rabbit hole" will be a series on sensory perception from the inside out and comparatively between overstimulated and understimulated.

ENJOY:

If someone had asked me what it was like to have sensory perception issues a few years ago I would not have been able to put it into words that would have made sense.  Even after reading Temple Grandin's book all I was able to say was that EVERYTHING was TOO MUCH.  That is not quantifiable and mostly the response was 'just ignore it.'

Could you ignore it when:
- your clothing feels like sandpaper tearing off your skin,
- the fluorescent lighting is flickering right in the middle of your brain like fireworks,
- the sounds of the people around you just moving about resonates like the crash of the surf constantly smacking your eardrums,
- the texture of the fabric on the chair of the person next to you is catching their  clothing and making a sound that causes your teeth to itch and your skin to crawl,
- the person's gentle tap to your shoulder hurts like they shoved a red-hot poker into you,
- the uneven edge of the nail you just broke [or chewed off] catches on everything which hurts your ears but you're not sure why,

and all of these things [and more] you have to deal with happen at the same time, constantly, every second of every day but you still have to smile and shake the hand of the person greeting you [though it feels as they just placed a deadWETfish into your palm] and keep thoughts and conversations going like a "normal" person while not flinching or making a rude face, or screaming at them to back away and STOP TOUCHING ME!!! 

I think it has probably been proven that if someone is placed in a soundproof room [where all they can hear are the sounds of their own breath and blood] they will quickly lose their shit. So live in that box while carrying on all the activities of a usual day for 3 months. Then I'll visit you at the nut house and where you can tell me just to ignore it... Provided you can muster any response besides rocking and drooling on yourself.

For Alice the struggle is different yet similar.  There are times when sounds [like our own voices or the media we are enjoying - music, TV, etc.] sound louder or softer than others perceive the same sound, or the light is brighter/dimmer, the smell is a pleasant whiff/horrible smog...  but for Alice it is a constant struggle for enough sensory input: She sits at the buffet and starves [while I try to not vomit the excess onto the person next to me... enjoy your next crowded buffet.]

As a toddler, she would stuff her mouth; past the point of full and to the point of gagging; just so she could feel something on her tounge and between her cheeks.  We used special oral sticks with differently-textured ends to rub inside her mouth to give her that sensory nourishment she craved and desperately needed.

Sometimes I have to intentionally overload one of my senses [usually hearing by playing my music and singing along] just so I can focus on whatever needs my attention.  I loved driving my car and turning the sound up to the point that it filled the small two-seater with the vibrations of the bass and the beat and the mellow resonance of the singing voice.  That was my squeeze machine and everything was okay once I made it to the car.  Once I could no longer drive I had to find other ways to push the release button.  On more than one occasion this involved JD picking me up and driving me around with the music loud in his car.  Alice also needs extra stimuli to function but for her it isn't an overload of one sense to blot out the others but instead she has to meet one need [usually touch] so she can concentrate on anything other than the incessant need for sensory input.

Like Alice in Wonderland, but without her guide rabbit...

or psychedelic drugs.  As she rounded out her third-grade year, my niece [is she still my niece if her uncle and I are divorced?] began having marked problems at school.  She was suffering meltdowns, anxiety, stress, and a decline in her academics. 

JD mentioned it in passing so I got involved.

Background: Alice had been diagnosed with sensory processing issues as a toddler but where I am always overstimulated [and shut down] she is understimulated [and explodes].  When JD and I were married, we had Alice twice a week.  I knew I had sensory processing issues and was helping with Alice but I had no idea about autism at that point.

It was interesting to see the differences between Alice and me because it also allowed me to see more about how the sensory issues affected me.  An autistic in a sea of NT's may not always realize they are different, but start pointing out some differences in specific areas and I started to catch on quick.  Plus with Alice being 3/4 [the "Learning to express yourself" age] I was able to help her communicate her sensory needs while I learned more about how both of us experienced the world.  [More about this in a later post.]

Present: After discussing the situation with JD's sister I made some recommendations for adjustments at school.  When those helped I was welcomed to become more involved.  Armed with my new knowledge of autism I realized Alice qualified as autistic under DSM5 [but not DSM-IV].  At this point, JD's sister was not very happy with me but after she had some time to process [and talk with a JD who has much more understanding and care for who I am] she came to accept my opinion as a starting point.  It helps that the school counselor saw several of the same things I noticed.

So all my studying and research work served a purpose, JD and I have mended several bridges, and Alice now comes to my home once a week.  Her transition back to school this year was a pleasant one.  As much as I do not want kids, I enjoy having Alice back in my life.  Rocky still is not sure about her but it is funny to watch him sneak up on her then run off once she acknowledges him.

View from inside the medication...

Relatively recently, due to my anxiety and distress, I was placed on medication.  That sounds more terrible than it really is but I can admit to it.  I am also putting this forward mostly because I do not believe that people who suggest medication really understand that there is not magic in that bottle nor do I believe that children placed on medication possess the opportunity [and/or vocabulary/range of expression] to provide input regarding how they respond/perceive their prescription.

One of the medications I was placed on was for attention deficit [ADD, ADHD] and as I am an adult, I had some say in the matter and thus was able to pick a variety [ie: Ritalin, Adderall, non-stimulant] and have some voice as to effective dosing.  As it has been quite some time since I was last medicated it was interesting to note the differences between this time and last. [Also, the fact that I exhibit a pronounced sensitivity to medications, an ASD perk; I got to watch my medical doctor near-wet herself while the psychiatrist gradually ramped up my dose.] 

I have come to the conclusion that medication really is not a 'cure-all' as I still have days/times where I'm scattered, distractible, or hyper-focused except now IT IS HARDER TO SELF-MANAGE!  Biggeldy-puck, how frustrating! lol!  I have times when it is difficult to concentrate on a flow of related ideas but because the medication helps to concentrate focus, I get too focused on the distractions.  Then there are days where I focus so intently on one small faucet of a larger project that I spend all day completing nothing [literally Saturday I spent 8 hours on a spreadsheet for a worthless detail of a larger whole].  The medication makes it harder for me to self-manage on days like those because I am being chemically stimulated to focus.

Not that it is all bad.  The medication mostly helps me to concentrate on what I need to be doing so I do not perseverate on one thing, have anxiety because I am not focusing, then shut down and accomplish nothing. Plus it kept me from testing out classic anxiety medications which I was not looking forward to.

When I was initially placed on medication it was done in lieu of testing/diagnosis. I was placed on a dosage which "appeared to do the trick" so nothing further was done.  What actually happened was I was placed on a variety which I did not respond appropriately to and instead the medication just made me feel so nauseous and sick that I was incapable of anything beyond sitting miserably at my desk.  I was then prescribed a second [and unfortunately worse] medication intended to counter-act the nausea but instead tasted so awful that it boosted the nausea to vomiting.  After 4 years, my body finally adjusted so that I only felt ill instead of nauseous.  I can now attest [from the vantage point of a variety/dose that works] that the problem was that particular variety not working as it was intended.

Also, medication is not a replacement for knowing how to self-manage.

Also, this too:

I notice many NT's around me seem to see the world as one either accepts fault or one is accusing others of fault. I see a similar idea expressed as "winning" means one person/side is happy/victorious while the other has clearly lost/been defeated.
At my ExWork it got to the point that; no matter how petty; nothing could reflect that I a) actually had ADA Rights, b) was/had been accomodated, or c) effectively completed any work-task.  This got rather ridiculous at several points, but it all came down to denying/bypassing/ignoring that I may have a) potentially been even slightly correct is the assertion of my rights or b) received any adjustment resulting from subsequent "battles" over employee/ADA/etc. rights/regulations/priveledges.
I see this when "talks" with JD [or others] oscillate between placing blame/fault/negative connotation/etc. on me or accusing me of lumping it upon them...
Seriously, I do not care if you want to re-write the rules of "winning" but, outside of a few well-defined arenas, "winning" happens when all sides are satisfied.  WWII was not "won" until nobody [including the Germans] was living under oppression.  One may "win" a hearing or "win" by subjecting another person/group to subpar conditions under their power/authority based solely upon the certainty that no one will do anything about it, but the bully has not actually won anything.  Also, the fact that grown people stoop to this posturing/attitude/behavior is just pathetic.  What did that person get?  Um, the humiliation and subjugation of another human being because that person is too stuborn/spiteful/self-important/prideful/arrogant/lacking-in-real-world-knowledge-or-intelligence to think clearly, make effective/good decisions, and/or treat people with respect/dignity.
Congratulations on being small and ignorant?  Hallmark does not make a card for that, how about a "Get Well Soon" instead.
Going back to a one-on-one argument, I do not understand why blame always/usually/often has to be placed on a particular person.  Yes, we ended up in this crappy situation and we are arguing and we have BOTH said/done things which were spiteful/immature/wrong/rude/hurtful/regretted but can we stop stacking blame like casino chips and actually just solve the [biggeldy-puck]ing problem?  We are miles away from it and too busy tip-toe-ing through the minefield of hurt and/or chucking warheads related to things which have nothing to do with the fact that this whole argument started due to a simple misunderstanding and has ended up being a multi-media event of every way one or both of us is a crappy person in the eyes of the other.
A disagreement is "won" when both sides are satisfied with the outcome and feel they have been treated fairly.
And as a contradiction to this [as many people see these ideas as conflicting] I am firmly in support of competition, sports, recognizing talent or a job well done, and the inevitable truth that some people do X better than others, some people appear insignificant in terms of abilities, and some people are inept at physical or mental challenges.  However, there is a healthier way to expose our youngsters to this - make teams of the kids who want to play ball but are not natural-born talents, encourage kids to try out for what they like, support the kid who wants to do X but needs extra support to be a productive teammate - without removing any reward.  Score teams, let there be a winner and a loser, but remember to mentor them on being good winners AND good losers, do not let bullying be an acceptable behavior, teach them to be respectful of themselves so they can be respectful of others...
There is dignity in every area, we all have strengths and weaknesses, we all have talents even if they are sometimes hard to identify, we all can contribute, but we may not all bring home the gold or be the hero or get the fame; this does not mean our lives lack purpose/meaning.

#ThisIsWhyWeCan'tHaveNiceThings

So I have been doing a lot of thinking and drafting and frustrated [metaphorical] tossing of paper into the bin.  I keep coming back to this one idea: The individual gets blamed for the sins of the [insert any larger entity here].
I have examples! Bare with me, this will not be easy. lol I will attempt not to rant.
A legal policy [tax/regulation/whatever] is meant to help/address X, the business/corporation/other governed group reacts by placing a negative consequence onto customers/employees/group of others/etc. and the VOTER gets the blame.
An employee is denied their rights/human dignity, and during the employee's attempts to have their rights honored, the employer penalizes other employees [removal of rights/priveledges, increased caseloads while trying to remove victim from employment, other alterations in the attitude/conditions of the workplace] and it is the victim who suffers the score and scrutiny of the office - often involving harassing conditions, hostile work environment, and out-right abuse but it is the VICTIM who gets the blame.
Child/Adult X is different and requires an alternate experience interacting with their world but is within a larger entity [school, business, care facility, etc.] that does not respect [or choose to even recognize an established difference] but it is the Child/Parent of Child / Adult/Caregiver who is ostricised and/or abused for the incompetance of the people in power/charge/etc.
I find this so frustrating because people complain about injustices yet appear blind to the injustices they commit.  I had to listen to a coworker [who created a hostile work environment for me] lament about her uncle being harassed at work for his medical problem.  Honestly, no idea how I kept my mouth shut.  She even adjusted how she addressed a coworker who is still there and was having a conflict with management over a medical issue but I was still unworthy of even the professionalism of civil, basic office interactions during the time I was still there.
I look at a world full of people who lie by omission with every simple yes-or-no answer, who bend their description/recollection of events to satisfy their adgenda, and who manipulate with wording and am absolutely flabbergasted at the fact that I [a paladin if ever there was one, I ask the cashier at the restraunt if I may take a toothpick/mint] am labeled a liar/manipulator by people who fail to know/understand/care-enough-to-be-bothered-with-the-fact that I work differently.  I do not perceive, describe, interact or engage with the world using the same filter as the majority of people out there.
If you take the time to give any biggeldy-pucks at all and actually get to know me, you would understand.
But that is the other thing: Once the larger group has written a person off, there is no social benefit to showing understanding/acceptance so [individuals within the larger group] just stop showing it.
Sheeple, this is how the holocost happened.  This is where genecide starts.  Did you not actually understand the lessons behind the history classes you were subjected to or did your history teacher(s) fail to point out the "behind-the-scenes" of the horrors of histoy?  Do you still think Columbus sailed to the United States, shook hands, and began a symbiotic and beneficial relationship with the Native Americans?
Sigh.