Thursday, March 1, 2012

Cognitive Impairment and AgCC

I think, for me, one of the most frustrating aspects to AgCC is that, on the one hand we can (and often do) have average, or even above average "intelligence" ( a loaded word without a clearly defined meaning anyhow,)  and have "floating defecits" in other areas.

To use my own life as an example, testing shows that I have a tremendous ability to memorize.  I can memorize words, language, "social behavior", computational math (everything below algebra.)  But, when asked to use this type of knowledge in a "higher octave", i.e. to use reason and logic to take rote knowledge and apply to areas other than that for which it is originally intended...that I cannot produce.

Such is not typically apparent to those around us, unless they spend enough time with us, observing, and then it becomes all too obvious.

When I was a child, my pop often said (and rightfully so) that I could "charm the balls off a brass monkey", and admittedly the sentiment is true.  I was the "class clown" etc...as I grew, I had great difficulty learning social behavior through inference...which is expected in society.  Rather, the way I learn such things, even today, is through rote memorization, intellectually knowing what is "expected" of me.

As an example, I never ever, had difficulty landing a job...I could put on a social affect (because I thought it is what people wanted to see), not truly understanding the behavior that I was "performing" for others.  Sometimes, even within just weeks of working with those same people, it became apparent to them (and to me) that something was "not quite right."  My words, behaviors, and such would be outside of the expected norm, and I didn't know why (let alone those I worked with.)

A few years ago, in my latest neuropsychological examination, the doctors report noted that for all intent and purposes, much of the way I seem to process (or not) could be termed dementia, except for the fact that dementia typically refers to loosing ability one had, and now does not.

It was further explained to me, that, while I excelled in areas of rote memory, and in fact have an extremely high verbal IQ, that when the difficulty and complexity of tasks increased, I began to decompensate cognitively.  This was made worse by the fact that until recent years, I'd never been properly trained and taught emotional regulation (something that "average" peoples pick up as they mature in adolescence.)

Fast forward again, to March 2012...since my Kaiser doctors recognized and diagnosed my AgCC there continues to be major changes.  Some things, I accept will never, can never change, its "in the wiring."  Other things, like emotional regulation (mentioned above) can be taught, or at very least improved.  This was a major stepping stone for me.  For me, it is exactly when I would flood emotionally, that my cognitive abilities nosedive.  Particularly when I flood, is when my brain would either become very locked and rigid in its thinking, and/or it would begin massive confabulation, which I've talked about in other posts.

At that point, I would literally think myself hopeless, insane, bankrupt emotionally and morally.  Thank you God, this is no longer my experience....

Largely due to skills that I continue to learn through Dialectical Therapy and C.B.T. or Cognitive Behavioral Therapy I have learned, and continue to learn skills that have daunted me my entire life.  The first most effective concept as an AgCC adult that I have learned about when dealing with my emotional disregulation is distress tolerance.., methods to become self aware when flooded with conflicting emotions that largely seemed to not have a "definition."

I can't speak for all AgCC adults, but for me this was the (initially) single most powerful concept for me to grasp.  The Work of Byron Katie while not therapy, shares much in common with C.B.T..  I imagine this is why I have found it so helpful.

In July, I will be going down to San Antonio, Texas to attend the annual convention of the National Association for Disorders of the Corpus Callosum . This organization was formed to support parents with children of this disorder, as well as us adults that are diagnosed/identified as AgCC.  Larglely  through the research of Dr. Lynn Paul and the Caltech Emotion and Social Cognition Laboratory, relevant research and intervention strategies are beginning to be developed to help people like us.  Admittedly the research is in its infancy, simply because its only in recent years with the advent of non invasive brain scans that AgCC could be easily identified.

The very idea, of being in a group of my peers, my true peers, takes my breath away.., I mean, I just can't imagine.  AgCC develops in different ways, different extents, with an entire spectrum of physical, emotional, psychological and social difficulties, and while there is very powerful correlation between all born with the condition, there is even more so a huge variation in phenotype (not just our genes, but "how they played out", how we (personally) developed.  I'm so excited...I'm not alone in the world anymore.

The shame, the embarrassment,  the resentment of others that (couldn't possibly) understand, even and especially from those who no doubt love/d us without measure...this is not something you can understand, unless you don't have a Corpus Callosum.

I've not been able to work a regular "in house" job for many years, largely due to what's been explained above.  Now, with the help of my doctors, occupational, physical and psychological therapists I have a whole new world before me.  We are going to try something new.

I never knew this existed, but there is something called Supported/Supportive Employment.  In todays workplace, while there are provisions to protect the rights of the disabled with the ADA or Americans with Disabilities Act (Thank you George Bush...eww did I just say that!) which helps by requiring reasonable accommodations to promote equality for the disabled in the workplace, supported employment goes much farther.

As there are many types of people there is also an entire spectrum of Supported Employment.  In its simplest and most stark, for those of low IQ, with severe mental retardation there are "workshop" environments....On the other end of the scale there exist even executive positions with doctors/therapists/professionals/coaches on board and on site that can intervene and be a constant source of support.

In short, if I were  to experience overload, and decompensate into severe cognitive impairment, I wouldn't necessarily loose my job.  There would be some type of trained professional, often right on site, to whom I could go to, or others could go to on my behalf, so that my needs can be addressed.  I had no idea such things like this were available, wow.

Also, while its taken me 5 decades to get here...I'm no longer interested, bound to, controlled by the "need" to "keep up with the Joneses" so to speak.  I've been shown that I am "normal" but my normal...I have no one to answer to, except that of my best/highest self.  Who the h*ll says I have to have the typical 9-5 over achieving job, that it has to look like "this" or "that?"

With all due respect to my loving parents, the Judeo-Protestant Work Ethic (JPWE), such that it is (generally I think an OK thing) does not address all the needs of all the peoples in the world of 2012. The old "just stick to your job and work harder, everything will be ok" just doesn't (always work.)  In fact, for me, and I stress for me alone, it is a flat out lie.  I have tried to work harder all of my life, thinking that if I "just did more" all these issues would melt away...well B*LLSH*T (sorry lol ;-) they don't.  I'm exceedingly happy though, for those for whom this works.

My own father, my brother, and I can think of many examples that the JPWE worked magnificently for.  Throughout all of my own families' struggles I remember times my father worked more than one job.  His children never lacked love, food, and even the good things in life.  God, please know that I'm grateful for that, you can't imagine.  Both of my parents, bent on sacrificing personal pleasure and comfort did everything in their power to, for the most part give my brother and I a strongly supportive, nurturing, loving and comfortable upbringing.  Especially in  light of the many millions of broken homes and peoples today...I have to acknowledge those that have come before me....we stand on the shoulders of giants...this is how we grow.  But even those giants, even our teachers, parents, always hope their own children will surpass even their own successes.  I am ever grateful for those that brought me to where I can climb on their shoulders, and see farther.

For those that have the need, climb aboard my shoulders, I'm here!

~Just Joe

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