Tuesday, November 25, 2014

Confessions of a Rampant Idealist...Black & White and No Grey

It is truly a wonder that I ever get anything accomplished in life.  
Why, you ask, do I say this? 

I am a rampant idealist. 
How so you say?  

Well, I am a person who is guided more by ideals than by practical considerations and this mentally itself flourishes & spreads unchecked by all considerations. I am a utopian visionary, dreamer, wrapped in romanticized fantasy, a daydream, a stargazer.  I am the consummate Portuguese Nefelibata; a cloud walker; One who lives in the cloud of their own imagination or dreams, or one who does not abide by the precepts of society, literature, or art; by nature unconventional & unorthodox.

Furthermore, these dreams are of a creative but rigid nature...
I strive for the rainbow, yet I see in black & white, shunning as something completely unnatural.  

I am so rigid in my thinking that I can (almost) never live up to my own expectations. Even so I will just as easily dispose of the expectation if I see no possibility of it's implementation.  In many ways similar to OCD, but yet not.  Mine is not simply a disorder of the thinking, but  of the brain's structure and function.  I constantly lower my expectations to meet my rigid view of the world, and if the facts dont' correlate with reality I become frustrated, and have learned so easily to abandon a course of thought or action.

Simply put, if things don't go my way, I either fight like hell, or give up completely.  Everything has a specific order and function, everything a singular purpose. If the train of thought is not allowed to go down it's track, it derails and causes complete devastation.  Moderation is something with which I am rarely familiar...everything has it's litmus test, which if not passed creates complete chaos in my mind.

Needless to say, this doesn't work real well in the everyday world.

Whenever I feel that someone is challenging my view of the world, even if what they say is coherent and rational, logical in it's conclusion, it does not compute.  I'm told, "look at reality" "look at the facts", but my reality my facts, are largely dominated by my imagination.  I will feel offended, fight to dissuade and persuade you to see the world as I do...failing that, I can become angry, argumentative and offended.

As a man of 52 years with ACC and ASD, I have learned to allow some grey in my life.  I've opened up to the fact that I have put on spectacles that do not allow me to often see the rich variety of colours that is the rainbow of all possibilities.  Again, however real this maturation it is not consistent, not complete.

Navigated the simplest of conversations, say with the phone company, or my bank, I feel less the advocate and more the caged animal fighting for it's personal boundaries.  To others, I appear stubborn, intransigent and obstinate.  I can't imagine how this affects those who communicate with me. It boggles the mind.

Even this explanation, this description is portrayed as a black & white thing, when logic tells me otherwise.  There are times I can open up to other possibilities; it's just that it is not the norm for me.

In a society that is largely bent on improvement, self-improvement, societal improvement, medical and scientific improvement, I view my own inconsistencies with scorn and derision. Learning to love and accept myself just as I am has not been an easy task.  I "talk a good talk" in this regards, I "logically" understand that I am who I am and it's not likely to change beyond a certain point, that I should embrace and love myself unconditionally...but this is rarely the way that I view myself and my world.  I am my own worst critic.  Taking apart every social, emotional and educational act and thought in my mind, and hashing and rehashing it ad-infinitum.

I often feel as though my thoughts were the gilded cage and I the bird sitting on the perch.  The door to the cage lay open yet I am so enamored by the beauty and complexity of my own thoughts that I would never consider escaping the cage to explore the larger world outside.

The thing is I don't enjoy the cage, it's ornate features and complexities, I'm constantly drawn to escaping it, but cannot see the open door laying before me.

And then POOF! The train of thought, all on it's own jumps tracks perfectly in sync with different thoughts, a different agenda altogether unknown just moments before, and the process begins again.  Many adults diagnosed with ACC later in life, I have found, at one time or another doubted their own sanity...and is it any wonder why?  'Tis a rather lonely place to live from, to this I can attest.

~J

Saturday, November 22, 2014

Adult Diagnoses & Me...

I already mentioned many time that I was diagnosed with ACC and ASD in adulthood.  What I haven't gone to deeply in, are the pros, the cons...how being diagnosed has helped and hindered me.  That's what I'll attempt to do in this post.

In the year 2008, I was suffering from advanced Hepatitis C, with signs of my liver cells turning to cancer.  I was experiencing really extreme itching/pins and needles and neuropathy, that it turns out was directly related to the Hep C.

Now, first the back story:

When I was a child just of 6 years old I was diagnosed with what they thought was ADHD.  In those days, not even doctors understood the implications of ACC, a missing Corpus Callosum.  It's likely the doctors told me parents "he's missing a part of his brain, but he doesn't really need that" (UM, REALLY??? SMDH.) I was always socially awkward, even though I was very extroverted.  By the time I was in 4th grade it was obvious to my family something was going on with me, but in all fairness how could they know?

I was put into a private school that year, and to my memory that's when things began to go really out of control.  I only lasted one year in that school, I remember times of great fear, I remember lots of selective mutism and other odd and out of place behaviors...I had (have) a tremendous imagination, and am primarily ruled by it, as it overrides my logic most times, and gets mixed in with "reality."

By this time my parents were accusing me of being a compulsive liar and manipulator.  Notwithstanding I did lie, and manipulate I suppose, but not any more than any child my age.  My parents and teachers were not able to discriminate between lies and confabulations (nor was I.)  I was taken out of this private school (the Saddle River Country Day School) and brought back into the public school system, where I began to severely lag behind my peers.

I actually remember myself in Jr High, running up and down the hallways, acting pretty much like a 6 year old.  I'm sure this was incredibly frustrating for my parents, teachers and the like...but just imagine how frustrating it was for me to know that I could not connect with my peers.  I do not remember having many/any friends, and usually those "friends" were situational/circumnstantial, they were "friends" only because we were in the same environment.

Through high school age, I honestly remember only one friend, and him coming over my house ONE day.  I remember his name was Gerald.  By the end of Jr High, I was taken out of public school and put in the Archie F Hay Village School.  This "school" routinely restrained students, beat and put students in isolation rooms (read padded cells.)   I consider my real education to have ended at this point.  Never in my 18 years of childhood did I ever do homework, nor did I advance in my studies.

In Jr High, I was consistently bullied, shoved into lockers, beaten, spit on, ridiculed...but never told anyone about it.  To be fair to my parents I don't know if they would have responded or not, but I never really told them about the bullying beyond elementary school.  I was taking the notorious "short bus" to school, being harangued and bullied on a daily basis.  I even remember bullies putting lit cigarettes in my hair and burning me.

 To this very day, I have nightmares about this "school."  The bullying came from teachers as well as students.

We should remember that Autism was not even diagnosed in those days, neither was ACC...they called us "emotionally disturbed."  I can't tell you how deeply I resent that label.  There was no real education happening there; everything was done in units, and to be completely honest, I learned how to (read: they showed me how to) cheat on units and tests, so that I might pass and get a decent score.

Like others on the spectrum, I actually tested quite high in IQ, yet like others in my situation, I tested high, but was not able to use any of these "skills" in  real life situations.  I have always considered myself an "encyclopedia of useless information", I had the knowledge but not the means to implement it, nor an understanding of its implications.

While all this was going on, I also underwent sexual abuse, both at the hands of extended family, as well as a stranger when I was a bit older... My life was a nightmare.

More about having knowledge and not being able to implement it:

Out of high school, I took EMT training at the County level.  I did extremely well in the training, but it was obvious in my first job opportunity that I had the knowledge but couldn't use it in "real life."  My parents were of the generation that embraced the so called Protestant work 'ethic' and they felt that I was lazy, that I just didn't "try hard enough."  I began going from job to job to job, not taking care of my needs, not able to consistently manage money, perform my ADLs.  For this I got nothing but scorn from my parents and misunderstanding.

By the time I was 27 I was put on SSDI.  I remember them saying I had many score of job attempts.  I don't think I began to understand responsibility nor adolescence until I was in my 30s.  Even so until I was roughly 40 I spent my life "couch hoping" from one to another acquaintance, until I wore out my welcome.  I honestly remember expecting (even as an "adult") that I would find someone to "take care of me."  I had no sense of being able to self care.  In truth that has come extremely late in my life, and even today isn't consistent.

Moving forward again to 2008:
I was having these multiple neurological issues and the Neurologist ordered a brain and spinal cord scan.  When he received the results, I remember him calling me into his office and I remember that with some trepidation he sat me down, and he asked me "do you know you have a piece of your brain missing? You have what is called Agenesis of the Corpus Callosum."  Immediately I experienced a flood of emotions. Shortly after this I was diagnosed as having an Autism Spectrum Disorder. I was also diagnosed with PTSD.  All of this after years of failed wrong diagnoses due to lack of knowledge.

On the one hand, this was my eureka moment.  I had heard of this disorder before and known of Kim Peek the famous ACC savant that Rain Man was modeled after.  I remember thinking how ALL of my life, I KNEW that I was different, that I thought differently than other people, that I had a loose sense of reality vs fantasy, etc, and how horribly difficult social function was for me.  I had finally proof that I wasn't "morally flawed" like my parents would make me out to be, from a very young age.  Cubic tons of self imposed shame and guilt began to melt away from me.

I also experienced real rage, real anger...
I couldn't help thinking how if this had been identified at a young age, and had I received early intervention that I might be a different man today.  I also, actually experienced (for the first time) real compassion towards my parents.  They were not perfect parents (who's are?) but the truth is in my earliest years they did try to help me.  They really gave up on me when I entered my teens...the time when ACC dysfunction begins to really stand out.

Even today, this anger is real and present.  There is no going back in time, rewriting history, so the anger is largely useless.  The single positive direction I have been able to turn in, was to do things like create this blog and share with the world about autism and ACC, and perhaps make like better for the young children now being diagnosed with this disorder at and early age, that maybe, just maybe it will help their parents provide an ultimately supportive atmosphere for them, that simply could not have existed in my young days.

While the autism part of my equation is relatively well known in society, ACC has really just been researched in the past 20 years or so.  There are giants, the likes of Dr Sherr and Dr Lynn Paul  both of whom are working hard to advance our knowledge of ACC; Dr Sherr its genetic causes, and Dr Paul exactly how it affects the cognitive and developmental abilities of those who have it.

So, I guess there are positives to this, but many negatives.  I have been estranged from my family for more than 20 years, and I have lived below the poverty level, frankly since leaving home as an adolescent.  I still have to fight hard for accommodations, and you would think there would be solid advocacy, but there is not.  I do have advocates, but with very limited scope and ability or motivation to help.

It is all of you, reading my blog that makes my life worth living.  I have struggled with suicidal ideation and depression most all of my life, even to this very day.  The knowledge that I am helping parents with ACC and autistic children and adults with the same, gives me comfort in large measure.  I don't know what I would do without all of you.

Thank you all for being part of my life.

Friday, November 21, 2014

The ADA is a Beginning; But Has it Gone Far Enough?

I've made the argument before, that the disabled are the hidden class of people in the United States that still have bias and prejudice heaped on them.  It is so much part of our culture that even today it largely goes unnoticed.

Most of you younger folk may not realize that there were no civil rights for the disabled as a protected class of people until the 1970s.  Prior to this time, the disabled were routinely shut away, institutionalized and marginalized in society.  In 1975 The Developmentally Disabled Assistance and Bill of Rights Act became law in the U.S., and it provided federal funds to programs serving people with developmental disabilities and outlined a series of rights for those who are institutionalized.  There had certainly been other legislation passed prior to this time, but this was the first (imo) far reaching law effecting the rights of those with conditions such as Autism and ACC (which, ACC, was not even understood or recognized yet.)

This legislation provided that  people with developmental disabilities have a right to appropriate treatment, services, and habilitation in the least restrictive setting that maximizes developmental potential, and specified that public funds should not be provided to any residential program for people with developmental disabilities that conflicts with, and does not meet, the minimum standards for nutritious diet, medical and dental services, prohibition of physical restraints, visiting rights for relatives, and compliance with fire and safety.

Prior to this time it was a nightmare for many of us living with a DD. At the time this legislation passed I was all of 13 years old, and conditions for the "school" I was in were abominable.  I was sent to the Archie F Hay Village School for the "Emotionally Disturbed" (I deeply resent that title) for the entirety of what would have been High School and some of Jr High.  Even after the passage of the law our treatment was pretty ugly.  Students including myself were regularly tied down with restraints, put in solitary confinement (read: padded cells.)  I myself had 5 full grown men sitting on my 95 lb frame restraining and suffocating me, shoving my head into the floor...many times.

You may think of the 1970s, then, as the dark ages.  But the sad thing is this treatment still largely occurs today.  On a regular basis I hear of "schools" being brought up on charges for the abuse of students.  I have greatly suffered from this.  It is something very painful to talk about.  I have been diagnosed with PTSD because of what happened to me,  I still have night terrors and nightmares about being beaten and restrained. Even though this law had been passed "schools" still regularly abused their developmentally disabled students.

In 1984 this law was amended to include the following goals:

  • Independence: The extent to which people exert control and choice over their own lives.
  • Productivity: Engagement in income-producing work.
  • Integration: Using common community resources, participating in community activities with persons who do not have disabilities, and residing in homes or homelike settings in the community.
One thing is sure (in my personal experience) that one can pass all the laws in the world, but I'm of the opinion that you can't really legislate morality.  Both the public and private sectors still had barriers to optimal living for the physically, mentally and developmentally disabled, and it is still so today.

In 1990 The Americans with Disabilities Act became law, and it provided comprehensive civil rights protection for people with disabilities. This law was the most sweeping disability rights legislation in American history. It mandated that local, state, and federal governments and programs be accessible, that employers with more than 15 employees make “reasonable accommodations” for workers with disabilities and not discriminate against otherwise qualified workers with disabilities, and that public accommodations and commercial facilities make “reasonable modifications” to ensure access for disabled members of the public, and not discriminate against them.

Yet, as I said, bias, intimidation, pity, ridicule and dismissal are largely how the ID'd and DD'd to date.  Granted it isn't the 1970s and things have changed a great deal, but the shift that needs to happen is more so in the collective mind of the country, than it is its laws.

On March 15, 2011, new Americans with Disabilities Act rules came into effect. These rules expanded accessibility requirements for recreational facilities such as swimming pools, golf courses, exercise clubs, and boating facilities. They also set standards for the use of wheelchairs and other mobility devices like Segways in public spaces, and changed the standards for things such as selling tickets to events and reserving accessible hotel rooms. The new rules also clearly defined “service animal” as “...any dog that is individually trained to do work or perform tasks for the benefit of an individual with a disability, including a physical, sensory, psychiatric, intellectual, or other mental disability.” This portion of the law also states that the services the service animal provides must be “directly related to the handler’s disability” and dogs that provide only emotional support or crime deterrence cannot be defined as service animals


Yet, 3 years later, public and private entities resist these laws.  For an example, a California resort that I am fond of had no disability access whatsoever.  This is because the law stated that they were "grandfathered" and not required to make any changes unless there was to be a major overhaul/reconstruction.  I was happy to see last year that the 125 year old Inn that I loved was bought by a new family, and they had made the entire place accessible for the disabled.

Slowly, very slowly there is a shift in the Zeitgeist towards a more inclusive world.  Slowly people are becoming more tolerant of differences and the other abled.  Where before was mockery, today for example we have TV characters such as Sheldon Cooper of the Big Bang Theory.  I would argue that his character is a stereotype, still not giving full justice to what it is like to live with autism, and that the author of the show specifically has not named Sheldon as an Aspie, but it is still a great change to see.

When I mention autism, people immediately think of Rain Man played by the consummate actor Dustin Hoffman. Again, I appreciate the exposure, but this was largely a stereotype.  The actual "rain man" that his character was modeled after was Kim Peek.  Laurence Kim Peek (November 11, 1951 – December 19, 2009) was an American savant. Known as a "megasavant", he had an exceptional memory, but he also experienced social difficulties,resulting from a developmental disability related to Agenesis of the Corpus Callosum, the same congenital defect I was born with.

Kim Peek




Kim is my hero.  When I was first diagnosed with ACC, I couldn't get enough of him, and Google the hell out of him.  I actually met him before I was diagnosed with ACC, how crazy is that?

Sadly Kim passed away in 2009 at the age of 58.  I would have loved to gotten to know him.







Here is a 45 minute video featuring Kim and his amazing savant abilities:

 

I was so proud to be one of him.  Certainly, very few with DDs are savants, yet his gifts were magical.  Where he had his gifts, he, like all of us also had his deficits and needed round the clock care.  Thank God, he was born into a family that treasure him and his differences.

So...is there not room in the world for Kim Peeks?  Is there not room in the world for Joseph Galbraiths?

I am so pleased that the tide has shifted to a more open and inclusive world, yet I don't believe we have gone far enough.  I believe we will have gone far enough when the likes of Kim and myself are no longer labeled as disabled, insomuch as our being included in the greater world.  We will have gone far enough when accommodations are not even called accommodations, but are seen as the just, forthright and moral way to live with those who are other abled.

The question is for each one of us...have we yet gone far enough?

Wednesday, November 19, 2014

The Sky is Falling, The Sky is Falling

If there is one thing (actually there are many) I hate about having ACC and ASD, it is the stubbornness of my brain.  I am not talking about the typical personality stubbornness that you see in all people; sure, I have that too, but I'm talking about something far more reaching than this.

Something both ACC and ASD share is we do not like change.  Perhaps it would be better to say that the brain does not switch tracks easily.

When I have it in my mind to do something, my brain only allows me so many steps or variables in any given task.  Above that, I will give up and not even make any attempt.
More so, I am trying to describe how our brains fixate on something, and we have great difficulty changing that.  This is part of executive function, specifically the ability to (at will) move the attention and action from one thing to another.  So why did I name this post "The Sky is Falling..."?  It is so named because this is also how my imagination, (which is dominant) refuses to change tracks even in the face of logic.  In short, my brain defaults to pessimism.

I'm unsure how much is the disability and how much is the added experience of constant let downs in life, but when I am pressured, and I don't see a way out of a given situation, I almost immediately take on a morbid depression.  My imagination will take hold of a bad situation, for all its worth, and will overthink it until an entire scenario is played out in my mind...I can go from "OMG I ran out of money" to "OMG, I'm dying and there is no hope" in a split second.

There are those who try to help, and suggest things such as "think one positive thought" and other such new agey claptrap...and perhaps this helps most NTs, but for the most part, it just infuriates me and makes things worse.  If I could change tracks in my thoughts, I would.  Sometimes I even can...but if I (or someone else) tries to push the agenda, it just entrenches the needle in the phonograph even deeper.  It can also sometimes trigger even more severe anxiety and gloom.

Now, I've talked about such things as DBT on my blog, and to be certain it can help.  But when I write about it I also mention the fact that not all these things work all the time.  There is no "quick fix" for when I get in this space.

As frustigating (yes, I just made up that word) as it is for me, I can imagine that it is really difficult for those trying to help.  Externally, they likely see someone who is stubborn, and while that can often be the case with me, it is not entirely so.  When my thoughts become fixed on something, my brain holds onto it like a dog with a bone.  This happens so much in my daily life, and I would do anything for it to be other than it is, but I know this will never happen.

Some of my friends realize this, and do there best to just listen, to just be there for me in a a supportive role...because just as sure that I am stuck on a particular track, the needle will jump eventually to an altogether different track in my mind, and will fixate then upon that.  The more they try to change me, the more frustrated they get, and the more anxious and frustrated I get.

For the life of me, I can't imagine what this is like for parents of ACC children.  Obviously parents mean well, mean the best for their child, but the child is just not "reacting" or "responding" the way the parent thinks they should be.

Personally, the rub for me is my lifelong battle with depression and anxiety.  Anxiety is quite literally a daily thing for me, and depression is a close second.  I get so disgusted with my brains (dis)ability to to change tracks, that I loose even more hope.  I've dealt with suicidal ideation since I was an adolescent, almost on a yearly basis.  While I wish I could help others understand what I go through, I do not wish that they could feel what I feel.  I truly believe, had you spent one 24 hour day in my brain/mind, you'd likely be balled up in the corner of a room in tears and terror.

Many on the spectrum go through such depression, and even very early in life.  My first thoughts of suicide were around 10 years old, I remember them vividly.  Even today, I have those thoughts all the time, yet I have strategies that help me to loosen the grip of Winston Churchill's "big black dog" that is this depression & ideation.

Holidays are particularly worse for me, and especially this year.  I'm currently undergoing a pretty profound isolation, because of where I had to move after Troya passed, and as I've mentioned before in other posts, this isolation is like poison for someone with ACC.  When I don't have other humans around me, I become almost 100% caught up in my stream of thoughts/free association, and it becomes like a jail cell to me.

I'm really happy to have had so many of you comment to me on Facebook and other places how my blog has (positively) affected your lives, I only ask that you share the blog in return with others who might benefit, and that you would keep me in your thoughts and prayers, especially during this season.

~Joseph

Thursday, November 13, 2014

Overwhelmed in an Ocean of Thoughts without an Anchor...

When I say I wish you could spend 24 hours as me, in my mind, I don't really mean it.  I think an average or neuro-typical person would be curled up in the corner in fear for their lives.

I've touched on intrusive thoughts before but haven't really gone into detail about what it's like.  My ACC brain has the equivalent of a "free association machine" that is running 24/7, 7 days a week and 265 days a year.  I don't even have a normal sleep life, I remember the majority of all my dreams nightly, and this constant stream of thoughts is never quelled but continues on into my sleep.  God help me if I am awakened by such a dream, I will not sleep again that night, because I will be only thinking and rethinking about the contents of the dream, not able to shut it.

The isolation I've endured after Troya's death and my having to be stranded in the desert only makes this worse.  When I have "live people" around me, they help to keep me grounded, in the present, not all the time encouraging the free association machine directly.  Sometimes it is as though I am trapped in my own head, my own thoughts and I can't escape them.

In normal everyday life, I am so busy analyzing say, a question put to me, that I will get lost in that analysis and delay answering, not be able to answer you, or I will simply blurt out any answer to fill the space while I'm still thinking about it.

So I am living amongst "a crowd of people" in my mind, while at the same time physically living in near total isolation, and it is having it's toll on me.  Without the tether, or anchor of other people around me, I become so lost in my thoughts that I can no longer easily perform my ADLs.  I forget to bath, and I stop taking good toileting habits, forget healthy eating, being able to clean and organize my surroundings.

I have always been a creature of structure.  While it is difficult for me to engage structure from within, I thrive most when I am in an environment structured to help me function adequately throughout the day.  Where I am living (read: "surviving") currently is in the Mohave Desert, in a town completely isolated with under 3,000 people, no services, very little medical or appropriate therapeutic interventions to support me.

I can spend (unwanted) weeks at a time not speaking to anyone, and if I do it is usually just momentarily a neighbor.  My mental health is decompensating as well.  There are only county mental health providers out here, and they do not have the means to meet my needs.

I'm also currently dealing with the death of my BFF Troya Patch last year in October, dealing with her family,  and not having any legal assistance nor the ability to afford it, my rights are being trampled all over.  I have spent the entire year since she has died trying to secure legal help, but because I am only on SSDI, and it is a "probate" case I cannot find the help I need.  Her family has gone out of there way to libel and humiliate me, falsely accusing me of all kind of abominable things.

While my blog is an outlet for my frustration, it cannot assist me where I need help the most....I'm overwhelmed in an ocean of thoughts without an anchor.

~j

Wednesday, November 12, 2014

Neuro-diversity, the (a) Final Frontier...


Repost from 7/15/14:

I would argue that prejudice against the developmentally disabled is at once the most acceptable, and yet hidden  form of discrimination on a social level.

Many my age grew up in  what some refer to as the developmental disability  latchkey times.  

I myself would only find out in my 50s that the entire truth was kept from me, and filtered  and kept from my extended family.  My parents knew of my ACC, and yet did nothing about it (even considering little could be done in those days, it identifies a major congenital birth defect.  

This is how the latchkey thing works:  "(s)he seems to be ok, (s)he walks, (s)he talks, so we'll ignore it."  This advice even came from doctors, betraying there own ignorance of the implications of something like ACC or ASD.  While my parents tried to help when I was younger, by the time I was 12-13 (the "magic age" in ACC when everyone who has a Corpus Callosum begins to socially integrate and mature, and we are left in the dust.  Having talked to many adults with ACC (particularly those more "visibly" effected) I hear over and over again (as is true for myself) that we doubted our sanity, more than once in life, before we knew of our diagnoses.

I have always known that I was different, speaking for myself at least; it was glaringly obvious from a very early age.  My parents, they refused to speak about or acknowledge my difference, sans only with the responses of shame, blame and anger.

The four common ways seen in society today that reinforces this attitude, and even is used to find this form of bigotry acceptable are:

Stereotyping, Stigma, Psychological Discomfort, and Pity

One sees the example of stereotyping every time someone shouts at someone visual impaired, even trying to ambulate them, as if they couldn't use their arms and legs.  A common stereotype one sees is that all mental or developmentally disabled people are violent or dangerous, or that physically disabled people must be mentally disabled too.  Finally, there is the lovely treating the disabled as if they are children.

Stigma; a mark of disgrace associated with a particular circumstance, quality, or person. It is a long standing part of Judeo-Christian culture promotes the idea that deviance from physical or mental norms is linked with deviance from moral norms. The Bible begins with the tale of Cain's being physically "marked" as punishment for killing Abel, and continues with numerous other stories associating disability and disfigurement with sin.  One need only look into the tales of the Brother's Grimm, Shakespeare and modern film to see this over and over again.

Regarding psychological discomfort, studies show when individuals are asked to interview a person with an apparent disability, there are more restricted in their communication, express views less representative of their actual beliefs, and  they will terminate the interview sooner than when interviewing the same person when that person appeared to have no disability.  Also people maintain a larger "body distance" from the disabled (or seemingly disabled) person, while if performing the same task with an "abled" person much more up close.

Now to my biggest pet peave, paternalization & pity:

Often people will view those with disabilities as neither incompetent, evil, subhuman, unnerving nor repugnant.  Still, they harbor concepts about them that result in diminished opportunity or outright segregation.


These people believe that the world is simply too much of a struggle for persons with disabilities, and, therefore, that they should be protected from its chalenges. Paternalism enables the dominant elements of a society to express profound and sincere sympathy for the members of a minority group while at the same time keeping them in a position of social and economic subordination.

The outcry that accompanies prejudice against racial, ethnic and religious minorities is rarely exhibited in regards to prejudice against the disabled. This lack of response is a paternalistic notion that persons with disabilities, unlike other minorities, "deserve" to be treated unequally.

Canadian studies found that, although two-thirds of employers expressed willingness in principle to hire persons with developmental disabilities, at the conclusion of the survey only 26% of them would agree to receive job inquiries from such persons.

Often people who would outright deny and disability bigotry, nonetheless respond in a prejudiced and exclusionary manner in real life situations with a disabled person.

You may have noticed, for the most part I have been reflecting on the visibly disabled.  I would also argue that the bigotry affecting the disabled in some ways is more pernicious and hateful towards those with "invisible" or "hidden" disabilities.

Not only those with mental or developmental disabilities, but countless physically disabled also have invisible disabilities.

This bigotry and hatred of the disabled can take most ugly forms.  One has only to look in the "news" to see this.  Who comes to mind immediately is Alex Spourdalakis murdered by his mother, and then his memory exploited by Eugenics based groups such as "Autism Speaks."  (Autism Speaks, does not in any way represent the scientific study of Autism, it's causes, effects, etc, but is based on bogus bs and pseudoscientific claptrap.)
Alex Spourdalakis, alive and happy

The concept of "normal" in regards to neurology, well, it simply does not exist.  The lovely little color charts of human anatomy and physiology that you looked at in high school (or even college and graduate school) are average or "typical" of human anatomy, to be certain, but only typical.  Anyone who has  been exposed to gross anatomy can tell you that there is a huge variety and difference in organs of the body, including the brain.  We are all individuals, we are not carbon copies of "perfect human body" or broken carbon copies...no, we are not.

Even taking into account the variation in genetic materials (your genome is unique amongst all human beings) there is also the individuals phenotype.  Your phenotype is your own set of observable characteristics resulting from the interaction of your genotype (genetic material) with your environment/social construct.

The concepts "normal" and "abnormal" are moreso a social judgement than a scientific conclusion.  They are rooted in the history I've mentioned earlier.

In 1973 the (American) Rehabilitation Act became law; prohibiting discrimination in federal programs and services and all other programs or services receiving federal funds.On July 26th of 1990, 3 days before my 28th birthday. George Bush signed into law the Americans with Disability Act. Prior to these laws being established in the United States it was clearly legal to discriminate against me based on my disablity.  Prior to this time, I did not have the legal right to decide my own housing/employment/relationships/medical care.

I for one, have decided that I will no longer strive to be simply "tolerated."  I am a (unique) individual, with unique gifts, talents and deficits, not unlike any other human being alive today.  I will insist, for myself, and all other-abled individuals, that we be allowed our place in society, be given equal rights, equal respect, and equal dignity.

It is time for mankind to move beyond this bias towards the other-abled, in all our forms.  The other-abled, may be your brother, or sister, mother or dad, relative or friend, perhaps not today, perhaps tomorrow, but they (or you or I) will be.  Those that insist on pushing us out of their sight, their memory, their presence, will be in the most horrible shock of their lives, when they find themselves in my (and many other-abled's) position, because, they will, whether or not they wish to remain blind to that fact.

Anyhow, that's enough of my thoughts for ya'll to chew on today

~Joseph

Tuesday, November 11, 2014

Come on over and sit a while...

Normal, average, self controlled,
Round peg in a round hole.
Born to be what I would be,
Many parts make up the whole.
Yet what you'll get is what you'll see;
Unique is what I'm born to be...

Special talents, flair and flaws,
Different every way with different laws.
All I can speak, and this I know;
Torn from mediocrities' claws.
God's gifts upon me are bestowed;
He the maker, He the cause...

One of many, only singular,
Constant dialogue, I the listener.
Ladder of clouds and thoughts my norm,
Internal, eternal, entirely insular.
Loving and innocent, friendly and warm;
Never at home always a visitor...

Won't you come enjoy with me,
This variegated world to see;
An orchestra imperfect,
Unless everyone can be...
Prejudice deserted.
Our differences; our very beauty?
It's so much more pleasant over here, why don't you come on over here and sit a while?

ACC, an Orphan Disorder

ACC can clearly be labeled an Orphan Disorder.  This means it is a disorder that has not been adopted by the medical industrial complex because it provides little financial incentive for the private sector to make and market new treatments to treat or prevent it. An orphan disorder may be a rare disorder (according to US criteria, a disease that affects fewer than 200,000 people) or a common disorder that has been ignored because it is far more prevalent in developing countries than in the developed world.

The oddball thing about this is that ACC is actually one of the most common brain malformations, affecting approximately 1 in 4,000 births.  As many of us go undiagnosed for a plethora of reasons, far too many born with ACC fall though the cracks, ending up misdiagnosed, or worse in prisons and detention, hospitals and the like.  While true owing to the fact that ACC is a spectrum disorder, many with it function relatively normal throughout there lives without knowing of their condition, studies are beginning to reveal that all children born with ACC have specific cognitive differences in how their brains function.

Also being ASD I benefit from science, from services that are clustered around that disorder, yet in the ACC community this is only recently coming together.  We have not benefited from the same kind of publicity that the autism community takes for granted.  Autism seems to effect far more people in the population than ACC, but there is a correlation between collosul disorders of all kinds and ASD.  This doesn't necessarily speak to a "cause" for autism, rather that these two disorders are closely related in ways we do not yet understand.

I am constantly thinking about ways in which we can educate and make public the prevalence of ACC and it's effects on those who have it.  I'm unsure as to how the autism community began this journey, but I am convinced that it can serve as a model for us.  We already have such great organizations as the NODCC, the National Organization for Disorders of the Corpus Callosum that are doing great work bringing together those of us affected by ACC, but so far they really lack the funding to educate on the scale of the autism community.  The NODCC holds conferences for parents of ACCers and adults affected with the disorder.

I have not yet been able to attend a conference, but it is one of my life goals.  I have lived below the poverty line for most of my adult life, and even putting together the money for airfare and for the conference is (so far) completely beyond my means.  This is a source of great frustration and sadness for me, as I hear of the great connections and networking many with ACC are making at these conferences, and the positive effect it has on their lives.

I do have the pleasure of belonging to a few online support groups, and I personally know one other adult with ACC that lives in my region, albeit too far away to visit.  The support groups are great, but I'm convinced nothing equals the face to face in person connection that these conferences can provide.

I'm hoping the right people can put there heads together, and discover ways that we can educate the population at large about ACC, can help organizations such as the NODCC education, inform and and assist others that so far have been unreachable.

What we really need is for our cause to be picked up by the media.  I've been, myself, brainstorming about how this might actually look and I have a few ideas, but I lack the connections and the personal ability to carry my ideas out.  I actually used to know several people in the media, but have long since lost any connection to them.  Would I have known of my condition years earlier I would have taken advantage of these resources.

We need to get the word out!  We need the same kind of notoriety as seen in the autism community.  How do we do this?

Inquiring minds want to know.

Monday, November 10, 2014

Parenting This Special Needs Child or Adult

 I am filled with anxiety and consternation of late.  I grew up in a generation that did not view disabilities in the way they are accepted today.  I was a wildly difficult child in my teens and adolescence, or so I thought.  I'm currently speaking to many parents with ASD and/or ACC children, and I'm viewing the frustrations that they go through on a daily basis.

My consternation stems from the fact that each one of these parents have made it abundantly clear that there is absolutely nothing their child or adolescent could do that would make them stop caring, stop trying.  I did not have that.

I'm torn between a rock and a hard place.  I cannot fully blame my parents for the reactions to my typically ACC behavior growing up.  I've talked to one parent that is hanging on by a thread trying to support their 24 year old child.  Like me, he can be abusive, aggressive, seemingly illogical and not wanting to engage their parent's help.  I was much the same.

The difference is, this parent has never given up hope, never stopped trying.  My own parents stopped trying years ago.  They refuse to acknowledge my disability, and instead label me as having character defects and immorality.  My parents are quite old now, 79 and 76, and I know they won't be around much longer, and this (internally) tears me apart.

Talking to my therapist I was explaining all this.  I was describing how insane I felt, still yearning for a relationship with my parents, while at the same time acknowledge their neglect and abuses of me.  How crazy I must be to want that.  She told me though, that the bond will always be there, my parents will always be my parents and that this will never go away.

Perhaps I could have tried harder to reconnect with them in earlier years, but frankly I have been scared.  My father since my teenage years has been the consummate bully.  I tried several times in my younger years.

When my brother Billy was getting married, I visited my parent's home for the first time in years.  I remember it clearly.  For the first 20 minutes or so everything was fine.  Here I was a young man in my twenties, and within minutes they were treating me like the 10 year old boy they remembered.  I sat in my parent's hot tub, and something came loose...immediately I got "you break and ruin everything you touch, you always do, why can't you change."  The next day, they had given me the house key, I had gone to wander in the woods behind our house.  Enjoying the day I remember laying on my back, looking up through the trees up to the sunlight.  I apparently dropped the house key out of my pocket.

Upon reporting this to my parents, I got "you can't be responsible for anything, why can't you be like everyone else?"  This was so utterly overwhelming to me, that without telling anyone I got into my car in the morning and I left to go back to California.  It was my brother's wedding, I was to be his best man.  Yet I was filled with so much pain I couldn't stay any longer.  I'm not sure my brother ever forgave me for this, but I know he wasn't aware of the entire situation.  The last I talked to him was some years ago, when I was having heart problems, and I wanted to make him aware.

I'll stress again, that my parents are products of their time, and at least in that regard are not fully culpable for their (mis)treatment of me, but I doubt they will ever have the foresight and humility to admit any of this, although I wish it were true.  Even today with all the internalized anger and hurt that I have towards them, I would drop all of it in an instant, setting aside the past, just to have a chance to connect with them in their twilight years...but I'm afraid this will never happen.

I want to say, how proud I am to be part of making life better for this younger generation with ACC.  My wounds will never completely heal, as I doubt my parent's own wounds will either.  But I know I am making a difference in people's lives.  So many of you have come forward to show your love and support, your belief in me, and I'm so grateful.  It makes my wounds and pain that much more tolerable, knowing that my encouragement reinforces your efforts to love and support your child(ren) unconditionally.  Without this, I would have very little reason for living.

Thank you for visiting with/ reading my blog.  Thank you for spreading the word about ACC and ASD.  Thank you for believing in me, where others could or would not.

Thank you,

Joseph

Saturday, November 8, 2014

Acquaintances, Friends, & Conversation.

One of the things that has always thrown people off about me, is that I am hyperverbal.  When I was in 8th grade I had a graduate level vocabulary.  Thing is, command of the English language and it's meanings is not necessary command at its uses.

On a regular basis I find my conversations regarding ordinary events descending rapidly into deeply philosophical matters. My over-thinking nature & extreme lateral thought process can quickly carry a local conversation to distant galaxies.

I've never been called rude for this (exactly), but often get that glassy eyed look of confusion and confoundment on people's faces...They wonder how I manage to take so many steps in a conversation in so little time.  Often my conversations will move into personal matters, for which I have no shame or embarrassment, that others find uncomfortable.

In other posts I talk about confabulation and the "the fish is THIS big" syndrome, and this touches on the same area.  You see, those with ACC often are constant free-associators, one thought, leading to the next, to the next ad infinitum. All the time, it makes perfect sense to us, we can follow our ACC logic but those around us become confused.  If I had a penny for every time I heard "where did that come from" I'd be as wealthy as Trump.

I've been lucky enough in recent years to have people around me that recognized this within me, and didn't "excuse" it, but rather they made space for it.  It's "just Joe", etc...That's good, because I can't be anything but that!

I most definitely experience the "giftedness" of this condition, non-stop creativity, thinking outside the NT box, seeing things other people cannot see.  While the negative side of this has gotten plenty of fires burning in my life, the gifted side of it helped me to figure out how to put out the fire.  Now I concentrate on not starting the fires to begin with.

Talking with me, is largely an exercise in following stream of consciousness.  I've had doctors, prior to my correct diagnoses of ACC and ASD say that I was "the worst case of ADHD they ever saw."  I can understand how someone can think that, not knowing of my brain's differences.  People often find talking with me exhausting.  Funny thing though my ACC friend Sara Oliver, she and I can talk and talk and talk for hours covering a thousand subjects, and still be able to follow our conversation.  While we are inflexible with some things, we are hyperflexible with attention and conversation.

So, parents, your ACC child may blurt something out of nowhere, in a conversation or on its own that will have you going "where did that come from?"  Please understand that it "came from" that spark of creativity which is the associative thinking process.  The words make total sense to your child, and in his or her thinking are perfectly in context.  Think before laughing at, criticizing or ridiculing what may seem to you as an off the wall comment.  If you can follow our logic you should be able to backtrack the conversation to the point where "they left off."  Listen to their stream of consciousness, then let them know you heard them, but what about "______" (the thing they got "distracted" from.)

Thank you for listening!

Parents, People, and the Politic of Disability

I have been writing out of a lot of frustration lately...I worry for the current generation of ACCers and ASDers, there still is not in place nationally the supports necessary for us to transition from childhood, to adolescence and adulthood.  In most cases, when a young person becomes 18 years old they loose the services needed to support them.  Many fall through the cracks, ending up in mental hospitals, or jails, or at worse the streets.

While it is better for younger children today; so much more awareness and support that has not existed before now, it is not so for many adults with ACC.

In my own case, my parents had limited knowledge, and also having come from a generation where these disabilities were ignored, denied and ridiculed, I can relate to many adults with ACC.  Certainly not all of them, but many I have talked to lived through the school of hard knocks in life, in regards to family, to adjusting, to making it out on their own.

Many of us, like myself have a terrifically difficult time maintaining employment.  Myself, by the time I was put on disability, had many dozens of attempts at work.  Lacking proper diagnoses, I tortured myself, always wondering why I could not fit in with the crowd.  Technically I possess a lot of skills, but when asked to perform them in everyday situations amidst the persons and politics of social life in the workplace I could not perform to standard.

I carried so much shame with me for years over this.  I grew up with the Protestant work "ethic" being literally shoved down my throat.  My parents believe that the solution to all your problems, is just to work harder.  If you couldn't or didn't work harder, you were seen as morally flawed, of bad character.

I was a difficult teen and adolescent to deal with.  I put my parents through many challenges, frustrations and the like.  I've been told by parents of other children with ACC that while this may be so, I've done a lot of things that are typical of teenagers.

When I was still in my teens, I felt so unsafe in my parent's home that I lived with a man who was well into his forties.   It was a creepy and abusive relationship, I really was still "as a child" in so many ways I didn't understand I was being taken advantage of.  Two friends from a church I'd belonged to, they pointed out to me how bad the situation was, and they moved me out of his home while he was at work.   This same man accused me of stealing from him (unfounded) and dragged me into court, embarrassing my family.  This was really the beginning of the end of my relationship with my parents, and I was still just a teenager.

Accounting for my parent's age, they still hold to wildly false ideas about me.  They've told other relatives that I am a "thief" that I am a "psychopathic liar" and far worse.  I've been assured and told by my doctors many times that "I am no psychopath."  For one thing, I not only have empathy, but I have empathy to the point where it is ruinous to me.  Because of my disability, I can't often separate my own emotions from those being projected by other people.

I hope my readers can appreciate the pain and agony I live through daily, having all of this on my plate.  Both my parents are well advanced in age, and refuse any contact with me.  They will have gone to their grave never even knowing who their son really is.

I still, largely, live my life the way a child would, even so in a 52 year old body and mind.   When I am out amongst my peers, I still feel that way.  I do not feel "equal" to those my age.  I have programmed myself so deeply with many of my parent's errant values that I still mentally torture myself, hearing my father's words in their common refrain "why can't you just grow up and be like everyone else?"

I know of other adults with ACC that go through this.  I have one ACC friend, who, while still in communication with his family feels "left out of the loop."  He has difficulty with (less so, than I, thank God) employment and work, and is himself on the edge of homelessness, where I have been many times.  My heart, it just breaks, for me and all those like me.  Even though his parents know of his disability they use the measuring stick common to the neurotypical world...how can we possibly compete with that?

As we approach the holiday season, I again approach it with dread, with loneliness, with the absence of family...and I know their are other adults with ACC that do too.  What I wouldn't give to have been born in today's generation.  What I wouldn't give to have my parent's eyes open, for even a moment to see who their son has become.  What I wouldn't give, to know my own relatives, niece and nephew that I've never met.  What I wouldn't give...

Friday, November 7, 2014

Isolation vs Insulation and the desire to belong...

****VENTING IN PROGRESS****

There is a myth out there, that those on the spectrum do not want to be social.  The same holds true, for ACC.  In my personal experience I crave the "belongingness" the desire to fit in, communicate with and understand others, I simply don't do it well.

My father used to use the expression that I could charm the balls of a brass monkey.  Of course, he meant that I was charming and gained rapport easily; but meant in an accusatory way.  What he didn't understand what that I could also gain rapport with anyone I chose too, but once I got it, I didn't know what the hell to do with it.

I can't thrive in isolation, but I do benefit from carefully constructed insulation.  I'm easily overwhelmed by too much stimulus, but lacking any stimulus my mind creates it, I get caught away in my imagination.  I'm altogether careful about sleep hygiene; about how large a crowd I expose myself too...I take it all in, sans any filter; I (unhealthfuly or not) protect myself from any situations of conflict, by any means. In a room with, say 6 people talking, I hear six people talking, blending together in an uncomfortable ooze of random noise.  I wear earplugs (and can still hear you just fine) as too much ambient noise gets on my nerves fast.

I want to belong, belong to a family, to a community, to the greater world...yet I have to belong on my own terms.., is that too much to ask?

It can be frustrating for others to be around me, because they aren't aware of how easily I become overloaded.  We are having a "normal" conversation one minute, and I seem to lapse into some nonsensical thing like why do alien dogs wear purple underwear, or something seemingly just as disjointed to you, but it makes sense to me.  The one thing that was apparent when I had neuropsychiatric testing was that I started out strong, but with increase of difficulty and or length of time, my cognitive skills decompensate rapidly...

I have to walk a fine balance, I have to have some measure of control over my environment, and how much I take in at any given moment, but I also have a tendency to isolate; and when not around others I become lost in my own thoughts.  I don't want to be lonely, I just want to be left alone.  I imagine that sounds as bizarre to you as it does to me, but that is my life.

Isolation is another thing entirely.  Since my BFF died a year ago this October I had to take the only living arraignments that I could survive on with SSDI.  I'm currently so far out in the desert, that I'm not getting my medical, psychiatric, special needs and more tended to.  In a town of a scant 3,000 people, I do not know anyone here.  The average year round temperature is around 100 degrees, and I'm desiccating in the desert sun.

The longer I am here, the more I decompensate, diminish and become deregulated.
I do not know what will become of me.

****VENT OVER****

Tick tock goes the clock

A Repost from July 2013:
Tick tock goes the clock
And what then shall we see?
Tick tock until the day
That thou shalt marry me
Tick tock goes the clock
And what now shall we play?
Tick tock goes the clock
Now Summer's gone away?
Tick tock goes the clock
And all the years they fly
Tick tock and all too soon
You and I must die
Tick tock goes the clock
He cradled her and he rocked her
Tick tock goes the clock
Even for the Doctor...

What does Dr. Who have to do with Agenesis of the Corpus Callosum..?
Good question!

I've always really identified with the character of Dr. Who, and this is why:

His sense of time is fluid and "corruptible" (changeable) 
He has two hearts..; I have "two brains" so-to-speak, 
moreso than one integrated whole.

His fear of attachment (emotional) because he will outlive them all,
I am loosely attached to people in my life, because I see them all, and myself, as just fleeting images, "they don't know who they are", I have no fear of mortality, there is no such thing as death for me, but it seems to cause everyone else around me so much suffering.
I'm more interested in who you are, 
than I am who you think you are.

All of this, and yet the character called The Doctor is still bound to life and death, intimately  in fact....

This body-mind-personality thing will have been around for 51 years in a few weeks...

We continue to revisit those things in life that we have not yet mastered, and my first half century has been "interesting."  Yet, knowing what I do now about my brain and neurological wiring, the, um, "world is my oyster." 

I am currently given to take care of someone I love and respect with all my heart, as her body-mind-personality thing, is nearing it's completion, the body puppet succumbing to cancer. Were it not for her, I'd not have been able to realize everything that is so much part of my life now...surviving Hep C treatment, discovering about my AgCC/ACC, and everything that came with it.

You see, I had been doing years of work to try and improve myself, yet this piece was missing, my ACC and everything that has developed as a result.  Unconditional trust, love, and support...can do magical things to the most hardened of hearts...She taught me to all out, no holds barred, believe in myself.  Barely off chemo herself, she was there 24/7 while I started treatment (the beginning was really rough for me) and as I quickly improved...

She was determined that she would "live long enough to see me become the person she knew that I was", to realize my potentials...she is, as I write this doing so.  

What else could I do for this person, who is like a sister, best-friend, mother-father figure, reflecting my image back to me, my potential...etc..?

I wish she would live for another 50 years, but this is not to happen...I've not even a guarantee that I live for 51 years...treasure every moment.  To turn away from my own needs and wants and comforts, and focus entirely on this person, even if it is just being there... 

I am approaching 51 years, and just want to thank all of you who have been with me along the Way...no guarantees, treasure each moment.  Make a difference.  Turning obstacles into opportunities.  Changing myself, changing the world, if only by my taking baby steps...

My medical team is in the process of going through what I can find of childhood records, medical, education, etc...they want to have me re-evaluated, in light of firming establishing me "along the spectrum" (ASD.)  I have found that ignorance runs deep.  Not just surrounding ACC, but any of the "unseen" disorders.  Most often I get the "we didn't have that in my day, our parents would have beet it out of us..."  They do not understand what a DD is.


Why such things frighten people is beyond me?  Why?  Because this is the story of my life.  It is my norm.  But on observation of others I see people who are terrified of anything under the umbrella "mental" "emotional" "developmental" "intellectual" disorders.  Again, this is the outside looking in, but I see people who think this too close to home.  They believe they are their mind, emotions, behavior and intelligence. They are wrong.  They don't know it though, so subconsciously, they project, fear, hatred and disbelief on those of us living with such a disability.

I've said it before, and I'll repeat it again.  My own parents were generally of the Protestant Work Ethic train of thought: "you're just not trying hard enough, work harder and everything will be ok."  My own father told me in his own words "there is no such thing as mental illness, only moral weakness." Denial ain't just a river in Egypt.

Over the past, say 7 years or so, I have begun to "map" my internal world.  What I mean is that for the first time, I have a more or less accurate way to describe my internal states.  I've been able to do this in great detail in writing, but in conversation and daily life it is simply not there. 

Many born with ACC find it difficult to describe their internal states.  In fact I've known for some time I confuse them.  For example, I cannot often tell, "I am feeling anger?  Or is that fear? Or maybe both?"  Until recently I've not had the tools to accurately navigate emotions internally.  I've also not had the understanding that what my body is feeling (in any given moment) may not be emotion, may be just response to the environment...or maybe emotions after all!  Thanks to hard work and therapy, and support from my Neurologists, and doctors and such this is at least within my reach.  It's not something I'll ever be fluid and consistent with, ACC is the antithesis of consistency; yet I still have a better idea how to navigate all of this.


I was currently approved by the State to have IHS, or in home services to assist me with my ADLs on many levels.  This is a game changer.  I am capable of all kind of feats of creativity, engagement and service, if I'm not distracted by the constant confusion I incur when trying to navigate the simple daily world that neuro-typicals find so easy.  Remembering to eat, remembering oral care, hygiene, dishes, laundry, oil in the engine, watering the lawn, taking out the garbage, navigating the stress of appointments medical and otherwise, managing my schedule...all things that I can do "mechanically", but cannot do consistently...thank you ACC and a non-functioning working memory :(

This will help me focus on my upcoming non-profit for ACC, and other projects I have in the works.   I am so very grateful.

I haven't enough words of thanks to those who have believed in me and supported me, emotionally, morally, and otherwise, so many of you.  


~joseph

Saturday, November 1, 2014

Today's Research for Tomorrow's Generation...

I'm blessed to be in the beginning stages of two different studies on Agenesis of the Corpus Callosum.  One is a genetic study, to try and discover the genetic markers for ACC, the other a connectivity study, to understand how the brains of ACCers think and work differently.  

While I'm excited for purely selfish reasons, to gain a bit more self knowledge of myself and this brain disorder, I'm really not doing these studies for me.  I know that a generation or so down the line, all of these studies will bear fruit that will help the lives of those born with ACC.  I have to deal with my own frustrations.  I'm a 52 year old man now, and I doubt that these studies will have direct impact on how I live my life and greatly improve it.

In many ways, I am a ten year old boy in a 52 year old body.  I am certainly highly intelligent, but I lack the social and emotional skills of even a teenager, and have difficulty with cognitive functions that most NTs find easy.  There are so many mysteries about ACC and Dr Sherr and Dr Paul are working hard to uncover them.  While I'm diagnosed with HFA (high functioning autism) in general there are strong similarities to autistic traits for those with ACC.  We are atypical, as in not sharing all of the traits all of the time, but we nonetheless have these.  I have enough to be classified autistic, but many have a smattering of them across the spectrum.

Studies show we have difficulty with certain cognitive and decision making processes, that we have difficulty understanding facial expressions or social cues.

In discussing this with my therapist yesterday, I explained what it was like when I was first diagnosed with ACC then ASD...you see, all of my life, I knew beyond any shadow of a doubt that I thought differently, that I didn't "get" things like other people did.  This wasn't in itself a horrible thing, but what dragged me down most of my life was my parental upbringing.  It was constantly drummed into my head that "there was nothing wrong with me" and that I just had a flawed moral character.

I know many would say "well, just grow up, you are not living with your parents anymore", but people fail to take into account how deeply our upbringing affects us.

When I was diagnosed, it was like a million lightbulbs going off in my head.  I finally understood that there was indeed nothing wrong with me.  I had gotten mixed messages throughout my life, "there is nothing wrong with you, just try harder" and "why the hell can't you just be like everybody else?"  Truthfully, it is/was no longer my parents holding me back, but it was  my programming, my view of the world and myself that held me back.

Just imagine going through life thinking you were a morally flawed monster, this is how I lived my life.  Always feeling like I was bad, cruel, evil, and non caring.  My own parents called me a psychopath.  It took my therapist to get through to me, that even with all the ACC confabulation ,and yes even sometimes outright lying that this is not sociopathy, she told me "all teens lie."  She also noted that I have an obvious overly deep empathy for others, and that sociopathy does not fit that distinction.

The current (young) generation of ACCers are being raised by parents that have a much better understanding of our plight. There is no question of any moral judgement, but an understanding that we simply do not think, process, or see the world like NTs.

Even through my late twenties, my imagination always dominated over my intellect/logic.  There was, within me a mixture of "how the world really was" and "how I imagined it to be" and these most often blended into something altogether different.  I remember being in my teens, and I was convinced that I was dying of the disease ALS.  I had told my parents this, firmly and fully believed that this was so, there was no intent to deceive, it was purely confabulated.

As I have matured, and am now 52 years old, I still confabulate, but nowhere to this extreme...yet there are, I'm sure even times today that I do not know fact from fiction.  I recall episodes with friends that I insist that something happened, or that we had a certain conversation, that they swear never occurred. Even using my logic, and telling myself they must be right so I will concede to their understanding, I still do not know it to be so, and think that I am correct.  I can't tell you how horribly frustrating that is.

When Troya was alive, she used to call it, "the fish was THIS BIG" syndrome.  She quickly understood that often when I described something, rather than take it literally, to look for the embedded message within it.  Simply put "the fish was THIS big" is really "hey Troya, I went fishing today."

This is one of the reasons why cognitive therapies don't work well with ACCers and ASDers, you cannot convince somebody of something which they know the opposite to be "true."  My therapist has often had to, many times even in the same session, continually reframe how I was understanding something, because it was not logical or accurate, or that I came to conclusions that were confabulated and "not so yet."

Connecting with some young adults that have always known about their ACC, as did there parents, they live in a different world than I did growing up.  I have no jealousy over them.  Perhaps I have some disappointment that it was not so in my case, but it honestly gives me great joy to know how much more ACC is understood today.  And I know that the research I'll partake in will help generations to come.

ACC is still a relatively unknown disorder by the public at large, but the fact is one in ten thousand births has a collosul disorder, even today largely going undiagnosed.  The thought that more and more children are being diagnosed at an earlier age makes me really happy.  Even with the relatively young understanding of this disorder, the odds are that the person with ACC will adapt and have a better outcome than the generations before them.

For this I am most grateful.