on the fringe...

on the fringe 

1. Lit. at the outer boundary or edge of something. He doesn't live in the city, just on the fringe.

of society...

I don't mean a particular society, American, 2014, white, blonde hair and blue eyed, or any other.  When I am referring to society, I am speaking of it as archetype.  I have always felt a pilgrim in this land.  Connected yet not even so...

Of all the labels that would be thrust upon me by the world, "white", "gay", "disabled", "Sikh", "animal lover and rescuer".., and on, and on...unlike so many caricatures of autism; AgCC folk want to connect socially, we often strive for it, but we constantly see our subtle communications skills miss the bulls eye.  Not once, not once in  awhile, but as a way of life.  

Non typical folk like myself often learn backwards of the average bear.  For one thing, we have difficulty generalizing one skill or understanding to similar or related situations.  It isn't until we have many many examples of that skill set, or knowledge, in differing circumstances, only then does our brains make a rule.  Average don't see the forest through the trees; I don't see the trees through the forest.

I find it remarkable, that this striving "against all hope" was part of my personality from early on.  I never wanted to know what, I wanted to know why.  Recognizing from an incredibly young age that I didn't think nor experience the world remotely like anyone else around me, I felt like an alien in a strange land.  This even came down to the relationship with my family, to all of our detriment.  At the same time, I wanted to belong, needed and wanted a niche; a society place to call "my own."  And it is only now at 51 I am realizing that we are one human family, and I in my difference belong in this family, make up a necessary part of it, and that my presence can better this planet and those that live upon it.  Yet there is still the struggle.

I imagine, for the rest of my days, "society" will elude me.  Funny thing though...

There are those who love me despite, and even because I am so different.  They love an accept me for who I am, call me their family and I them.  

More than a simply philosophical construct, I really grok the human family...

a dynamic relationship experiment on the global human scale...we are all in school, that is, all of us as human beings (should) strive to better ourselves and the understanding of ourselves, and we should support this in all who me meet.  

Whether it be my family, my occupational (limited anyhow), social or spiritual associations I have always felt "left out" of the inner circle.  I don't drink or do bars anymore, but I remember feeling the "stranger in a strange land" in the GLBT world, I feel the same in my educational, vocational, political and religious labels as well.  It can be rather frustrating.  This is compounded by the fact that many ASDs and AgCC doubt our actions all the time..."did I say the right thing," "did I do the right thing,"  "did they misunderstand me?" "how do I get my point across?"

I guess my reason for writing this...if you are neuro-typical, please try to understand the struggles we go through on a daily even hourly basis.   Do not misunderstand, I love my life, just as it is, I wouldn't change a thing, but it is a daily struggle of connecting and belonging.

This is hitting me so hard right now as it has been 4.5 months since I lost my best friend and spiritual sister to ovarian cancer.  She was the first person I could ever relate to without fear of being misunderstood.  She herself was most certainly not typical, and we spend our days in complete acceptance of the other, despite what our families and acquaintances did.  I watched her grow in her last five years, more than in her entire life, and the same is true for me.  Now I'm utterly lost without her (I'm being over dramatic here.)  I related to her so entirely.  It seems that her family as deeply misunderstood her as mine did myself.  Because we shared that, we lived in an environment of utter and complete acceptance of the other, with all our wonderful differences and imperfections.

It is just before dawn now, as I finish this post, and as is usual this time of the morning, I am thinking of her, and thanking her for her presence in my life, in life, and even more so in her "death."  The body has dropped, but the lessons, the loves, the friendship and belonging she gifted me with is stronger today than even while she walked the Earth...I love you Troya, and I miss you terribly.  Godspeed in your Journey to the next Whatever <3

~joseph

Nice to know some things are on schedule

As I write this I'm 51 years old, and I've never been more content as I am right in this moment.  Nevertheless mamma never promised me a rose garden!  

I have been struck by this overall sense of being comfortable in my own skin.  Sharing the experience with others I'm told this is common for both men and women around 50 or so;  you've lived a while and experienced much, and in my case "backwards generalized" the entire catalog of the school of hard knocks and plateau experiences and began to make sense of it all.  

Doesn't do a thing for my memory and organization of my thoughts...

anyway...

I'm starting to access services that can help me such as OT, PT, having an IHS worker that helps me when I need it.  So, no, not exactly a rose garden, but Life nonetheless...

Contentment.

There are a lot of changes occurring and shortly occurring in the future...and considering I don't do well with change, I'm handling life with grace, and a new kind of confidence...

Change the world, one person at a time, and start with yourself!

A Peek into Genius (my brain) . . .

A N D . . . 5,  6,  7,  8   .   .   .

Stream of Consciousness posting...

(What this means is that there is a method to the madness, a means to an end, but you cannot see it!  Assume this with me always...)

Brains are all different, you see.  Some will talk of "normal" or "typical", please someone show me this...I've not ever seen it in myself, nor have I seen it in an other.  Just as with ASD and ACC, generalizing knowledge is not my strong point...  A child (or adult) with ASD and often with ACC views the world through our particularly unique rose coloured glasses.  As an example; a "typical" 5 year old who has been told "don't cross the street without looking first" while crossing Main St, infers and generalizes that (s)he should not cross any street without looking first.  SAY it isn't SO?~?~?

Someone with my unique neurology experiences life differently:

If you tell me "don't cross the street without looking first", I won't, at least I won't cross Main St. (the street you told me not to cross) without first checking to see if a car is coming towards me.  However, I will, most likely walk over to Broadway and run right across the street with no concern for oncoming traffic.  And (I know, don't start a sentence with "And") likely this will be true for 1st Ave., and 2nd St. too.

People with ASD and ACC often "backwards generalize."  This is how it looks.  Mum tells me "don't cross this street without looking" (Main St.), then she takes me to Broadway and she gives me the same admonition.  Again, she takes me to 1st Ave. and 2nd St. and does so again.  Now I have 4 different examples of how things work, and from this I "backwards generalize", I now create a new rule, thought, behavior, etc... based on my experience with mum and the four streets she took me to.

Repetition, repetition, repetition, and more repetition...We may even state "I got it! I understand", yet will not be able to complete the task in question, until we have actually performed the task under "supervision" many many (did I say A LOT?) of times.  In the old days, teachers taught with the method "See it, hear it, do it" and this works well for people like myself.  In fact all children learn better with that method, because it covers all the main modalities of learning (visual, auditory, and kinesthetic) and so regardless of the child's strong points or weak point this method appeals to all the modalities.  Less than 5% of the planet learns kinesthetically (by touch, movement, performance) and I am one like that.  In fact, I almost entirely learn that way alone.

It looks like this:
I see what you've shown me, and I hear your explanation, and perhaps even have a good cognitive grasp on it, yet I will never  be able to perform the task, unless not only shown, but having myself being "put through the paces," through the actual exercise of practicing the task or knowledge  physically, tactically, operationally, etc... and with supervision and prompting.  For me, individually, I might even have to be put through the task dozens and dozens of times for it to "take" both cognitively and as a discreet behavior (actualizing not simply memorizing facts about something.)

Of course, I was born without a Corpus Callosum so their are quite literally two sides to me.  There are with most typical folks too, but they often go unnoticed as discreet and unique processes as they do with me.  For most there is some level of integration...

For many years I felt like the Greek myth of when the Gods created mankind.  (Wo)Man, was created androgynous ("Adam and Eve" were one being, as it mentions in the Torah, not two beings, in the beginning), and they were joined at the back.  The one is always completely aware of the other, yet not able to see, nor touch, nor directly apprehend / comprehend the other.  The myth further states that this created human being moved around through life, almost like when we did a cartwheel as a child, and hopefully the two sides are cooperating, and travelling in the same direction; if not at very best is halted jerky movement, at worst, no locomotion at all.

When I began learning about my neurology, this myth appealed greatly to me.  I felt it described me to a T.  So I began to honour all my disenfranchised parts, so to speak.  I have haltingly, tried to operate from a viewpoint of logic only for most of my life...tried to "figure things out."  This never worked well for me though.  I learn by doing, not by thinking.  I learn by experience.  I learn if and only when the knowledge, skill, behavior has become a gestalt (a whole, 3 dimensional and felt experience), short of this it is only "words in my mind."  Linear words at that, no inference, no colour nor comparison, rather black and white, on and off "facts" which bear little resemblance to reality.

The concept of linear words vs words that are in themselves a gestalt (a felt whole experience) such as the Japanese Kanji, (the adopted logo-graphic/ideographic Chinese characters (Hanzi) that are used in the modern Japanese writing system.) both a Chinese and a Japanese can read it, understand exactly what it means, yet call it something entirely different, still understanding what it means, because they share a common concept.  It does not represent a sound or a (?) phoneme, but a "seed concept."  These seed concepts even built upon each other changing meanings organically, much like a DNA sequence chain.

For example (and I am making this up for ease) a small line, representing the idea "straight."

From that is then compounded another image in the character that represents a shift in the meaning, with the new strokes in the image "straight" becomes "arrow" etc. and it works more like organic language tiny concepts, but fluid in use of expression.

Our Western language systems however, are based on phonemes, and an alphabet ( a representational sound system.)  My brain doesn't do this well, reading can be quite an effort with a disordered working memory and diminished executive functions...  It is like "translating it twice"  going from the words to a concept, then to an image.  I already have the image, that's how my coconut works LOL. Although, for example , the Japanese Katakana is a basic  system like "A, B, C" however it is used only for the unusual, or the italicized, for foreign borrow words, as the intent it approximating the original word with typical Japanese phonemes. It's used also in signs and advertising, book titles, etc... obviously focused on pronunciation as it's main intent.  

I actually owe a lot of thanks to my mom and dad for involving me very early in Judo and Karate while I was still young. I'm sure I was average, but the experience was invaluable, I learned values and lessons, regardless of any "disability" that have stayed with me many years.  And I also learned to love Japanese culture, in my not so different search that everyone really goes through as they mature and move out into the world.  One of the things I gained from this is an understand of Kanji.  When first exposed to an ideographic representational language system, I felt, for the first time, like a fish in water.  I found my element, so to speak, and found it ridiculously easy.  Today I understand perhaps 2000 of the 3000 Kanji commonly taught in Japan for primary education, I can just about read a Japanese newspaper.

Regarding language, my brain also has its unique abilities.  I am multi-lingual, have competency in perhaps half a dozen languages (even Western ones), but I didn't learn them the way a "typical" person would.... In my case, simple exposure to the spoken language for a long enough period of time, and I do that backwards thing I spoke of.  I learn vocabulary last.  I start by listening to the cadence of the speak, inflection, and syntax.  You may wonder how I can comprehend syntax prior to (advanced) vocabulary, but I pick up basic vocabulary by examining syntax, and phrase structure grammar... not the "normal" way of doing things.

I think in 3D....have practiced meditation my entire life, and find ridiculously natural, skills that many spend their lives trying to perfect.  I not only can visualize any object perfectly internally, but can even project it outward into my (actually visual/physical) field of vision...for example I can image-in an apple and set it on the desk here next to me, eyes wide open....I can then pick it up, feel its texture, smell it, and bite into it, hear it crunch, etc...

Internally it is even a bit stranger...When I "see" something inside, it is primarily, anyhow, not visual but kinesthetic.  I "wrap myself around" an object, and I "see" it with my felt sense.  In the same way you use proprioception (the ability to know where your body is in space and in relation to things around it) externally to navigate the world, I use it internally, to navigate or "feel around" an image.

IF I can do this, then I spontaneously can hold its perfect image, internally, and even externally....YEAH confabulation (it is the imaginative confabulatory process, I believe, that allows me to do this.

In short, you think in words translated to concepts then images, but I think in images translate that to concepts and words most naturally.  Yet for me it has texture and shape, form, colour.  The kicker, this never shuts off.  My brain is constantly producing streams of tens of thousands of images...it gets quite crowded in here (and in hear LOL.)  I have something called sensory disintegration disorder...the typical brain, able to manipulate and order the 6 senses (the 6th is that ability specifically) is easily overwhelmed in me, sound, light, and touch at times can be penetrating and excruciating to a degree I would not wish on the worst of Hitlers.  The technique of deep sensory stimulation, has been quite literally a Godsend for me, the only thing that orders my disordered senses, and does so completely and quickly.  If you are AgCC/ACC and or ASD (or even ADHD) the likelyhood is you experience at least some of this sensory disorder. The link in this paragraph leads to an extract of a study that explains the technique and its use in some details...my thanks to Temple Grandin who helped rediscover and mainline the knowledge and application of this technique.

It is now time to give this brain a rest...thank you for listening....now back to your regularly scheduled programming.

~joseph
~gurudaasa

Juggling and brain function growth plasticity...

No I cannot grow a missing corpus callosum & neither can science (yet, but that is way too Frakenstein for me to even consider) but the long assumed evidence is in.  We knew the brain remained largely plastic cells continuing to grow and migrate throughout the body until about age 26, with the rapid development of the nervous system slowing down about then...but this is amazing:

Did you know that neuroscientists are now getting into the juggling act? Brain researchers at the University of Regensburg (Germany) have found that learning to juggle can change brain structure.

The researchers divided 24 people into two groups:

1. The Juggling Group: 12 subjects learned a three-ball cascade juggling routine. 
   They were considered to be skilled jugglers when they could juggle for 60 seconds.
2. Non-Juggling Group: 12 subjects had no juggling practice.

Magnetic Resonance Imaging was used to measure the size of different areas within the brains of the subjects. Brain scans were taken before anyone practiced juggling, three months after the jugglers practiced and three months after the jugglers stopped practicing.

At the first brain scan, there were no differences in the brains of the study participants. However, at the second brain scan, a significant expansion was found in two areas (the mid-temporal area and left posterior intraparietal sulcus) within the brains of jugglers. These two areas of the brain are important for processing information related to moving objects. No changes were seen in the brains of non-jugglers at the second scan. At brain scan #3, after the jugglers stopped juggling, the brain expansion seen earlier was reduced. 

This data suggest that learning new skills can alter brain structure. However, it is unclear what exactly caused the brain changes. The expansion in the two brain areas may have been caused by an increase in the number of nerve cells, glial cells or synapses.

Further research may provide therapies for people who have brain damage. For example, it may be possible to design an exercise program to target a specific area of the brain to repair damage and restore function.  I think we have a long way to go, but it's nice to see the archaic "you'll only ever have what you were born with, and it's all downhill from there" view of the brain and nervous system, begin to choke and die.  I foresee great promise and development for the betterment of us all with thinking like this.

Comments?

Complexity of Emotion and Social Interactions....Finding Balance...

First, to all my readers, I apologize for not having written all month.  Many of you are personally aware of the activities in my life right now, and aren't surprised, but others do not know.  My thanks to all who continue to call me there friend and reach out to me.

Reflecting (and frustrating) on how easy it is (or appears) for others to read the emotions, intentions and subtle clues in human communications.

There is this "land" where all of that occurs, yet Gandalf stands there (where my Corpus Callosum should have grown) and shouts YOU SHALL NOT PASS. Throw in high functioning autism and Oooooh Macarena...


I work hard to find a balance in life, that I never quite seem to apprehend on my own...

I write quite a bit about not being pigeon holed, labeled.  I speak about how for the most part labels have served me, rather than hold me back, however there is yet another side to this.  I have always had difficulty asking for help...scratch that...I have always had difficulty articulating exactly what I need, the "help that will help" me.

Growing up this was so very difficult.  Like most high functioning non-typicals of my age and generation from the outside looking in we appear "normal" often enough (at least this is what others say, personally I have no concept of what normal even really means, other than an arbitrary social designation.)  Both ACC and ASD are spectrum disorders though, and spectrum does not necessarily denote an A-Z, or 1-100 scale that an individual falls along a line upon.  Rather it looks more like a block of Swiss Cheese.  This is because, (to use the previous A-Z, 1-100 scale) it is not that "everything to the left is dysfunctional, and everything to the right functional." It is more like, say, I do good with A-F, but have G, H, I, missing, I got K, and L, have M missing, N through V works some of the time, but not all of it, and W, X, Y, and Z, I haven't a clue.

People judge us by there own subjective view of us, but never consider what it is like for us, never walked in our shoes.  I've said it before, and I'll say it again...if many of these naysayers spent one twenty-four hour day in my shoes, they would be huddled up in a corner, in terror and/or tears.  I don't say this to promote a woe is me attitude, I only want others to understand that the world looks mighty different through my neurology than it does yours. (And the truth is, this is true for everyone.)

The balance that I have had difficulty finding is between discovering and improving my spectacular skill sets, while at the same time, being able to admit those things I cannot, nor will ever be able to do without help from others.

Many of my close friends, and those who follow my blog, know of my best friend and Soul-Sister Troya Patch.  Troya died October 2013 after a long battle with end stage ovarian cancer.  I became the Trustee of her Estate and felt I could do it all on my own. (I had managed a Trust some years ago, but, as it turns out, that Trust was an extremely simplified version of what Troya did for her Trust.

I recently sat down with the Trust's attorney, and we went over many things.  She also gave me documents to read.  I was overwhelmed by the meticulous details and sequential happenings that must take place with a Trust.  The attorney explained to me that no one could really be expected to manage a Trust on their own without legal assistance, let alone someone with my neuro-differences (my comment.)

People with Autism and people with ACC both often over think things.  We often imagine scenarios that have not yet taken place and we worry, worry, worry about it, while at the same time loosing touch with what must occur in the present to have life run more smoothly.  The truth is, that managing (or attempting to) the Trust has pushed me to the brink, to the edge.  The most amazing thing though, this wonderful woman, my sister Troya spent her last years encouraging, nourishing, and supporting tremendous growth and change in my life.  She alone "held the pregnant space", the nurturing environment in which I was completely allowed to be myself, discover, forgive, embrace and love myself.  Over the past 8 years, but particularly the last 6 I have gained more social and emotional skills than I have in my entire lifetime.  I owe this to my hard work, the dedication of doctors, OTs, therapists and more, but especially to Troya.

In the words I used with my MD "If this had happened (Troya's passing) in my life, just 10 years ago, you would be peeling me off the streets of LA and hospitalizing me."  This has been a test that the Divine has given me, not for Her benefit (the Divine's) but for my own.  This entire time Troya has been whispering over my shoulder to stand up to  the person bent on  bullying me, reminding me of the "metal" I am made of that I made it through 18 months of my own chemo and immunotherapy, and lived.

So I'm always asking the question where do I draw the line?  There are those who would (who have) judged me with the same line of bullshit my parents did for years "you just aren't trying hard enough", and there are those that would even discourage me, telling me "you just aren't cut out for that, accept your differences."  There must be a balance in the elusive middle somewhere though.

It is easy for me to be so caught up in who and what I am not, and not capable of, that I forget I have skill sets that some deem incredible, that you likely will never have in your entire life.  This is changing too, but more slowly.  I'm in the process of writing a book about living with ACC/ASD and my journey along the way.  I am forming my own Mobile Notary Public business (which I will write more about in the very near future),  I am actively reaching out and helping in the lives of others with my peculiar neurology and their families.  Becoming a Notary Public is a huge accomplishment for me.  It may not appear so to others, they might role there eyes, but to that I say f*ck y**, no one has a right to judge me, and especially not by their own standards as a benchmark.

But, in order to do this, I must always keep in mind that I cannot meet all of my own needs without help, and this will likely be the case until I am old and draw my last breath.  I don't like to admit that, I still have the echo in my head of my father saying "why can't you just be normal, why can't you be like everybody else?"  (The answer is two-fold, there is no such thing as "normal", and no one is like anybody else.)

I want to thank everyone who has and continues to help me through this most difficult time in my life, especially my soul-sister Troya Patch.  I want to thank those who believe(d) in me, even when I have difficulty believing in myself; for being a constant encouragement and support.

I had wanted to already be writing more on my blog since January, but my life has been so fully with things to do, and only now is slowing down to a dull roar where I think I can pick up where I left off.  Be expecting to hear more from me soon.

Every single day now, I get emails from people directed to my blog, who either have, or have a child born with AgCC and/or Autism.  They relate to me how important it is the work I am doing.  I am peculiar (in more than one way LOL) in that in the past 8 years or so, I have developed a very strong theory of mind.  TOM or Theory of Mind  is the ability to attribute mental states—beliefs, intents, desires, pretending, knowledge, etc.—to oneself and others and to understand that others have beliefs, desires, and intentions that are different from one's own.  Deficits occur in people with ASD, AgCC, Schizophrenia, Attention Deficit Hyperactivity Disorder,  as well as neuro-toxicity due to alcohol abuse. Though there are philosophical approaches to issues raised in discussions such as this, the theory of mind as such is distinct from the philosophy of mind.  

Temple Grandin

  In short, I am able to help parents of children born like myself understand what my own parents could not (for lack of education and information.)  I can help them peek into the AgCC brain, much the same way as my hero Temple Grandin helps others peek into the Autistic brain.  

Albeit, AgCC is also a spectrum "disorder" and even though their child may turn out to be very different than I, they can still get a round about approximation of what it must be like to be their child.

My parents did not have this, and I will never be able to fix that in my own life, however, knowing that I am making this difference in others' lives gives me a joy and peace I cannot even describe.

To all my faithful followers, I bow in reverence and touch your feet (a sign of humility and honour in my traditions.)  We are all teaching, and learning from each other.

~joseph

Until all the pieces come together...

For a long time I remained obsessed with the greater picture.  In other parlance, I couldn't see the trees through the forest.  My brain deals with whole images, and has difficulty with constructs made of many parts.  

This "reverse polarity" also shows up in regards to  the way I learn verses the way a "typical" person learns.   A "normal" child will learn, once (s)he puts there hand in the fire, that it burns and never to do it again under any circumstance.  If (s)he sees a fire again in an altogether different circumstance, (s)he generalizes, learns from a single example and then applies the knowledge to an other part of their life.

But a child that is not neuro-typical might not learn it that way.  Rather we learn by the eventually collecting of various situations and form an understanding that they are related.  We don't generalize our skills well into other domains of our lives.  Speaking for myself, many of us feel compartmentalized and split off from parts of ourself (I don't mean in a multiple personality sort of way, rather that our "theory of mind" or conceptual framework that "I am not my thoughts, thoughts are things and I can examine and change them. others have thoughts feelings and emotions to and I can relate and communicate with them by understanding how they think")  It is only later in life, I'm now in my fifties; where I have developed this theory of mind to a powerful and helpful extent been able to implement change and growth in my life more than in decades.   Is is my opinion that theory of mind is the single-most profound gift and skill that a parent of a developmentally disabled child can attempt to reinforce and nurture.

I never had this in life, until recent times.  I had a firm intellectual grasps on the concepts, but could not "self-apply" them as I can now.  In my case it is the result of hard work, and many years of deep introspection.  I was in fact very aware of my mental processes on a conscious level, but could neither affect them nor interact with them in any creative capacity.  Self-Inquiry and meditation, many dear teachers, doctors and therapists, case managers, occupational therapists and many others now assisting me, and for the first time at 51 years old I get it....  the world is my oyster.

Later in life, I now have a better grasp on the concept of the "pieces that make up the whole person 'me' ..." As long as everything is exactly the way I want it to be, I am totally flexible... Funny? Perhaps, but true nonetheless. Our thinking, my thinking, is inherently black or white, has trouble with grey let alone the rainbow of colours.  Behavioral flexibility is another piece of the puzzle that you can introduce into even a child's needed routine.  For example, I have a very bad time remembering to and brushing my teeth.  I would even walk up to the toothbrush several times, look at it and walk away.  I then was taught about introducing flexibility into my all or nothing thinking and it would work it's way, so to speak into other areas of my life.  So, the next time I walked up to the toothbrush and "gave up" because I started walking away, I decided to grab the electric toothbrush and use it at the kitchen sink, then finish upstair with the flosser.  The next day I did the same, but walked to the downstairs bathroom.  I have "given myself options" and those options help me to follow through on thoughts and/or tasks.  

We (I) have very strict mental "lines" in our thinking process.  If even one little thing in our pattern that we have established gets "moved over" we cannot function, and are liable to get really angry, and deregulated in behavior and communications.  Teaching flexibility can change that, and the earlier, the better.  Even if your child is not yet diagnosed, work to reinforce these things, and do it now,  do it right away.  The earlier the intervention the better the outcome, period.   Perhaps in these earliest years, you can benefit and do more for your child than during the rest of there lives.  

To be fair, I'm certain my own parent knew nothing of my thinking processes persay (they had no concept of their own, what was I to expect?)  While I have worked through and healed the bitterness and pain, I must clearly admit and recognized that had I been given correct treatment, diagnoses and care from the earliest age, I would be an entirely different person today.  Be that as it may, my task is to encourage and educate others to to so for their children without reservation.

Until all the pieces come together, I'll not cease to try and help  myself and others gifted with our unique neurology.  There is quite a bit of evidence now in science that what we think of as absolute genius, Einstein for example, is actually an abnormality, often a mutation.  The spacial-visual parts of his brain are many times larger than seen in typical humans....and he (began to) unravel time and space before our eyes...

I am unique, I am different, I am, as are you, made of many different parts...we need not hide in the shadows anymore. We are your friend, your boss, your mailman, your neighbor, and we are coming out into the light and we are going to shine.  We are only "disabled" as in the actual sense of the word; society has barriers to our equal access.  This is as much true, if not more for children and adults with a developmental disability or ACC.  Our difference is often ridiculed, and scorned and "tolerated."   While I would be a liar to say that my DDs haven't held me back in life, I would not trade my brain for anything in the world...I wouldn't be myself anymore, and I would have my talents and gifts, my love and compassion and urge for equality for all.

~joseph

Getting with the program...

I intended to post more often and Life had gotten the better of me.   Wonderful, when this is the reason for not posting.  You see, doors are closing, others opening, what I thought were walls are really windows, I just had to wipe away my doubt and fears with the Windex of knowledge to see opportunity where once I perceived only limitation stagnation and frustration. 

I'm not one to make New Years resolutions.  For one thing, they are nothing but, in my opinion ridiculous and ego stroking.  If one were to have really desired and resolved to do something, it would already be done. Why would the first day of the civil calendar mean anything at all?  

You must understand that this is coming from a man born without his corpus callosum.  One of the absolutely consistent things about an individual with Agenesis of the Corpus Callosum is inconsistency.  Before I understood the clinical and medical reasons for this, I was filled with loathing and self hatred.  I doubted myself more than people doubted and even denied me.  As my early childhood medical records reveal, my own parents knew of my condition and never spoke of it.  In fact, they have called me "psychopath" "liar" "evil" and things I cannot even repeat in mixed company.

The unfortunate thing is not my lifelong estrangement from my biological family.  The unfortunate thing, is really that I internalized the anger and hatred, the disappointment and outright denial that I wasn't your average neuro-typical bear, even when I didn't (medically) know what was different about me, I actually understood quite clearly from say, age of 12 that I thought profoundly different from others.  But I never understood why.

Recently I was evaluated by a specialist that works with ASD or Autism Spectrum Disorder.   While I knew that I showed autistic traits and such, I wasn't prepared for what they told me.  I always considered myself an expressive person, and was observed to have a limited range of facial expressions and gesticulative expressions (body language to communicate your meaning.)  Then it was said plainly that I score towards severe autistic social and communicative tendencies....and I'm thinking "I do?"  

I was observed, however, over a long period of time and was given examples of how my behavior was typical of someone on the spectrum.  The diagnoses is all the more difficult because of my ACC, quite a few of the traits cross over in both directions.  There is a noticeable percentage of those on the spectrum that are born with full or partial agenesis of the corpus callosum.  

If someone is like myself on the spectrum and they have ACC, they potentially have both the social and communicative issues (just because I speak, and extraordinarily well, sometimes, does not mean I communicate well on a face to face basis), as well as profound memory issues, and confabulation to boot, it is no wonder that I tried (seriously) committing suicide in my twenties.  I had no support, no medical intervention, had the truth hidden by my pediatrician and doctors and family (even from other extended family members.)

Today however, things are different.  Knowledge is power (do I have to say that again?) :

KNOWLEDGE IS POWER

It is well time I get with the program...time to forget what "family" and society says I should be, and start being myself.  

I have "pressed me down" so long that I barely know myself any more.  and this is changing too!  Have you ever noticed, you can sometimes still see tree seedling coming up through the cracks of the hardest cement?  Well, this is me folks.  If I were to die today (heaven forbid) on the "New Years" eve (that was actually the solstice, folks ;)  ) , I would return into the Arms of Eternity knowing that I have helped others, loved others, made a difference in the lives of parents of and children like myself...Great things are happening for me, and my platform for sharing about ACC and Autism is about to grow big-time (more on that in the future.)

I don't plan to die though....watch me ROAR ! ! !

I want to take this time to thank all of you who have supported and continue to support me in my Journey of Life.   I leave behind 2013 with the (physical) absence of my dear spiritual sister Troya, and while my heart aches, even now I feel her hand on my shoulder as I write this, and she is so proud of me.  I cannot thank you, my "chosen family" and friends enough...

To all of my friends and chosen ones (family), to all of you who support and encourage me, thank you...

In 2014 may you and all of your loved ones know happiness

May you know freedom of suffering

and may you know Peace.

I love you all

Joseph Galbraith/Anandagurudasa Singh

A Blog Post to Parents Everywhere...

I initially wanted to write a blog entry with parents of DD children...and then I thought how my thoughts clearly apply to parents of all children generally, and us DD children specifically.  I have been touching the subject in all of my latest posts, but here I'll speak in specifics:

Eugenics Propaganda

It is my experience that all human beings are possessed of unique capabilities and individual expression.  The major problem I see today, is that developmentally disabled individuals are not integrated into the social norm.  Rather, we have been set outside the boundaries of "normal" by the average, the "typical" persons in society.  But typical is an illusion. Normal is just a setting on the dryer, and that is all.  Throughout history, people with developmental disabilities have been viewed as incapable and incompetent in their capacity for decision-making and development.  Such thinking is deeply rooted in the Eugenics movement.  By the mid 20th century it's perverse ideas being promoted and to a great extent propagandized successfully, as many of its ideas have entered into our cultural zeitgeist.  It is also my experience that this is the problem.  

Someone with developmental or intellectual disabilities (or for that matter, physical disabilities) is in no way lesser than those without them.  This is the reason behind changes in language from dis-abled to other-abled.  Your child is possessed of infinite potential, packaged in his or her own uniquely individual self.  Nourish that, encourage that, feed that.  In yourself, as well as your child(ren.)  It is true your child cannot or cannot easily do things other children in their pier group can do, to deny this is ludicrous. That being said, this is not untrue of all children/adults/individuals.  Your child did not come into the world an empty slate; but a uniquely empowered individual.  It is this uniquely empowered young man or woman that will leave their mark on the world.  Your child has the potential to discover purpose in their life.  Can a parent ask for anything more for their child?

Bigotry and bias towards intellectually and developmentally different peoples in our country, while not acceptable to all, most will turn a blind eye, shuffle off the individual to a category in their little brains, behind a closed door in the dark.  I am now "marked" as that category in their minds, so I don't matter, I'm less, you are superior, I'm inferior and to be tolerated at best.  

Enriching your child's sense of belonging, of being a necessary part of a greater world and society, in their own unique expression of that, is in my thinking the single most empowering thing you can do for them.  Even if their world is much smaller than someone else's.  Even if  they aren't average (especially if they aren't.)  Teach them that they have the power to make a difference.  Because you do, and they do.  

My own parents admitted to "do as I say, not as I do."  Out of one side of their mouths they said "I can do anything I put my mind to," spewed out of the other side of their mouth was "why can't you just be like everybody else." and "you'll never be responsible for anything."  I believe their intent was (originally) good, but their carry through sucks.  

My Guru has taught me that our words must match our actions.  This means, even IF our actions are nefarious, we are clear with ourselves and others in such actions.  If we say we believe thus and such, and such a way is how we must live our lives, but we don't actually live up to our own words, others learn to not trust what we say and do and far worse, we learn not to trust ourselves. And, as actions teach louder than words, we pass this (potentially) on to our children.

Teach your child to stand up for themselves and be strong, by standing up for them and remaining steadfast.  In today's world DD children are at a much higher risk of passive neglect, physical abuse, neglect, sexual abuse, psychological and emotional abuse.  We are more likely to be constrained and restricted from normal activity.  We are far more likely to be victims of financial abuses, legal and civil abuses and systemic abuses.

Especially, create an environment for your child where they would feel safe relating any of these abuses to you.  And those of your who aren't parents and who know DD adults, please do the same for us.

It brings me immense joy to speak with parents of ACC children like myself and see them championing for their child(ren.)  I almost feel like the little lady in Poltergeist (I think she was also one of the original Oz munchkins) "This house is clean! " LOL 

My thoughts of kindness stretch over all ACC children, adults, and their parents like a warm blanket to envelop your being and caress your souls...

~joseph

Seva / Service, Life With a Purpose

Amos Muzyad Yakhoob Kairouz, better known as Danny Thomas, the extraordinary actor, humanitarian, and father of Marlo Thomas (That Girl, in the 70s) was the visionary behind and creator of the St. Jude Children's Research Hospital. 

As a "starving actor," Thomas had made a vow: If he found success, he would open a shrine dedicated to St Jude Thaddeus, the patron saint of hopeless causes. 

Thomas never forgot his promise to St. Jude, and after becoming a successful actor in the early 1950s, his wife joined him and began traveling the United States to help raise funds to build his dream - St. Jude Children’s Research Hospital, a hospital for needy children, where they would be cared for regardless of race, religion or ability to pay - a hospital where no suffering child would be turned away. 

Danny Thomas

He fervently believed that “no child should die in the dawn of life.” With help from Dr. Lemuel Diggs and close friend, Anthony Abraham, an auto magnate in Miami, Florida, Thomas founded the St. Jude Children's Research Hospital in Memphis, Tennessee in 1962. 

Since its inception, St. Jude's has treated thousands of children for cancer and other catastrophic diseases. In 1996, Dr. Peter C. Doherty of St. Jude's Immunology Department, was a co-recipient of the Nobel Prize in Physiology or Medicine in 1996 for key discoveries on how the immune system works to kill virus-infected cells.

"All of us are born for a reason, but all of us don't discover why. Success in life has nothing to do with what you gain in life or accomplish for yourself. It's what you do for others." ~ Danny Thomas

The life of Danny Thomas segues into what I want to write about today:

Growing up with ACC and ASD, I have always felt socially and even cognitively disconnected, from family, from acquaintances.  I understood that I stood out amongst others, I wasn't "typical", my own father telling me "why can't you just be normal like everybody else?"  People think that we don't feel, don't emote, that we have no empathy, but the truth looks entirely different...

The opposite is true.  I find myself deeply moved and desirous of reaching out to others consistently, even if at my own pace and manner.  Particularly, today I am wanting to educate others on developmental disabilities, ACC, ASD and the like.  I am working daily to help improve things for today's generation of children and adults who don't fit the label of the common neuro-typical individual.

We must not settle for being merely tolerated, or anecdotally  known: "I saw Rain Man / The Big Bang Theory..." etc...  We are your sons and daughters, brothers and sisters, mothers and fathers, your employee and your bosses.

I wish to act to promote a world of equality where the other-abled can come out of the closet, the closet imposed on us by bigotry inherent in our society.

I feel as if I am a dog with a bone,  I am living a life with purpose, and Life with a purpose.  I can not ever imagine it being other than this purpose driving me through life, even though I know intellectually this is not so.

I understood this secret to my life many years ago...a sure way for me to be relieved of my suffering is to relieve the suffering of others.  He who is the least amongst men, is the greatest of all.  I speak here of the idea of seva or selfless service, reaching out when one sees a need in order to fulfill it, with absolutely no desire nor expectation of recognition or compensation, nor any specific outcome.   This is not your mother's co-dependency however.  As one reaches out to meet the needs of others in the way I mention above, one intuitively knows how to meet one's own needs better than before (s)he gave themselves to selfless service.

I receive so much joy and peace in my heart, supporting and educating parents of neuro-different children and neuro-different adults.  Referring them, listening to them, supporting them.  A large part of my Non-profit will exist to promote communication between ACC adults, ACC children and their families, and to provide materials and methods to spread awareness about ACC.

Education is key.  There is not one single thing that will promote and support better lives for us with ACC than education, teaching people what ACC is, how we are different, how we can be supported to not just cope, but even thrive and develop our own unique skills and abilities.

I'm never going to be in the "business world" of my families' imaginings, the "Protestant work 'ethic' " and all of that.  Never going to have the wife and house and 2.5 kids, blah blah blah, ad infinitum, but I am thriving now, making a difference in many people's lives.  I'm finding where my skills are.  I'm in the process of receiving my Commission from the State of California as a Notary Public and plan on making some income that way.  I'll be returning to class (I say "class" because I will only take one class at a time) to finish my psychology degree, no matter how long it takes...not to become a psychologist, but for me.

Troya at the beach, shortly after she was re-diagnosed with cancer

To be clear, the life of selfless service, while it has been a lifelong desire and goal, became real for me through the life of Troya Patch, my spiritual sister.  I learned by her example, and I owe her a heart of gratitude for this.

Troya never cared (to) much for things, and externals, and the next, latest, greatest whatever...She cared for people; two-legged and four-legged with tails.  She found her happiness in service and in love and friendship and a common purpose of bringing Light, Life and healing to all who needed it, without cost or expectation.  This is the example by which I wish to live my life.

~joseph

Now, back to your regular Bat Channel!

Labels, Fables and Other-ableds..; It Is Time to Turn the Tables...

"The most common method of 'labeling' people derives from a general way of perceiving members of a certain nationality, religion, ethnicity, gender, with a certain disability...or some other group. 

When a majority of people hold a certain point of view towards a certain group, that point of view becomes a stereotype. This stereotype affects the way other people perceive the groups in question and the result is a 'label' that is metaphorically imposed on the members of the group in question. 

A member of a targeted group is thus 'labeled' by the larger society, and along with it, the nuances underlying the label, be it positive or negative, that aids in the formation of social stereotypes." (thank you Wikipedia)

Of course, we humans use labels in other ways, than that mentioned above. Certainly without "labels" concepts and constructs it would be very difficult to navigate the "real world," but there comes a point at which the thing labeled ceases to be living and dynamic, rather it becomes stale, stagnant, and black & white.

Take me for example, I'm a 51 year old man who has been labeled for as long as I can remember.  I've noticed that once someone successfully attaches a label to me, that "I" cease to exist in their eyes.  From that point forward they associate me with the label.  But, I am not a label.  Prior to the diagnoses of my ACC and re-discovery and re-diagnoses of ASD, I had literally been given dozens of inaccurate labels by physicians and clinicians.

I was called ADHD, Borderline, Schizoaffective, depressed, dementia by doctors.  My own father goes so far as to call me a "psychopathic liar", "manipulator", and even more horrible things I won't repeat here.

Having said that; I admit that both ACC (incontrovertible, since it is a physical brain malformation) and ASD, both fit me to the T.  The thing is, all of those years of wrong diagnoses, pumping me with drugs that always far worsened my cognitive, emotional, memory and social skills, could have been avoided.  It could have been avoided in a world where clinicians are more focused on individual clients/patients and how they personally "show up in the world," rather than trying to pigeonhole me into an arbitrary insurance category in the DSM.

I've heard the comment from some that, "taking on a label will only weaken your abilities and functionality in the world."  While this may be true on some level, it most definitely is not the case for me.   Since I have been properly diagnosed with ACC and now ASD, I can exhale.  I have been waiting to let go, relax, to exhale all of my life.   I have been trying to live the life and labels that many in the world think and expect that I am supposed to do, to "fit in and be normal."

I have caused myself long-lasting and excruciating suffering by always holding myself up to the standards of other people.  It is I, however, that must take responsibility of this (primarily.)

Yet (secondarily) the "hammer down the crooked nail" mentality which goes hand in hand with the Protestant Work "Ethic" is forced down the throats of those of us in the Western hemisphere.

There are situations, however, where "labeling" can open doors and create possibilities, can heal, can thrive.

You might argue that labeling is a kind of limitation.  I am prone to agree with you.  Having said that I would have to say boundaries and limitations are what make life possible, they only hold us back if we identify or define ourselves as or by the limitation.

In the eastern religions, boundary and limitation is the source of Life, or to be more precise, allows Life to flourish ( be born, mature, grow old, then die.) Shiva (or Consciousness) is the source (origin) of all, but is inert, inactive, immature and impotent without Shakti (or Matter/Mother/Existence.)  Life is only pure potential without limitation, (She is called "the Great Limitation" in India) which gives it its form and Existence.

In the same way all humans are filled with an infinite potential, tailored specifically through biology, psychology, etc...

To be clear though, my infinite potential is not yours, nor does yours look anything remotely like mine.

My ACC and ASD diagnoses do not hold me back, they free me.  I am a fish, and family, "friends", the world and society tell me if I can't climb there tree I'm stupid, useless, a burden.  No, my diagnoses reminds me that "I am a fish", that there are others just like me, I am unique, unusual, one of a kind.  I have an  eidetic and encyclopedic memory for  all kind of extraneous information; but cannot tell you what I ate for breakfast this morning, or if I brushed my teeth, without help and prompting.  I can sit down at a keyboard and type my thoughts without end, a few of them quite profound, but cannot explain it to you face to face.  I've had a lifelong ability to create Rapport between an other an I, but have no idea wth to do with it, once I have it...

Your asking, "how is this a good thing?"  Well,  knowing, acknowledging, and accepting what I am not, frees up my infinite potential to be the unique and talented person that I am.

It is obvious to the (scientific) eye that each one's potential is unique and genius, yet society itself sets up rules and limitations, customs, and expectations.  It seems a human thing, (although I do not claim knowledge of sociology) throughout all cultures and social groups.

This is the "hammer down the crooked nail" analogy, all over again.  It seems to me, in our democracy, our Republic that we say we honour individuality, and that we honour creativity, productivity, etc...but in reality we are still largely bound up in selfishness and hold our individuality, group, clan, religion, ethnicity, sexuality or politic to be superior over our neighbor's.  What is the old saying? "Walk a mile in another man's moccasins."

So, here it is...

I'm turning the tables..;

I find it humorous that this learning and developmentally disabled guy, who has slogged through the first have of his life, languishing, crushed under the weight of my "disability" is the same one who is out here today educating parents, and other adults and children about ACC and ASD.  If I am out and about and you treat me with disrespect and bias I am gunna call your ass on it. 

My mission in life (one of them) is to promote the diversity of individuals both unique & neuro-typical.   Each and every person should be allowed to develop to their full potential.  Yet no one comes into the world with a blank slate, we are each, once in a lifetime occurrences.  What would an orchestra be, without the triangle, the tuba, the violin or the piccolo?  It would not be complete, that much is certain.  It is an individuals goal, right and privileged to discover what part they play in the grande orchestra that is human life.
It is to the betterment of all humanity.

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

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

May all beings be happy
May all beings be free
May all beings know Peace

~Joseph

and we're off !

Troya Lynn Patch  | 1959 ~ 2013 

I'm as it were, entering the second half of life, I'm neither slowing down, nor am I speeding up; but I am coasting along, taking in the scenery whilst focused on my destination. 

Every day there is pain, even when I know this world is but a fleeting dream, that there is so much more of it unseen to the eyes...I miss the presence of my best friend, and yet strangely feel her more "present" than while she was bound to the Earth...

If I spend the second half of my life gaining even an iota of the grace, compassion, love and commitment, service and selflessness that Troya embodied, I will be a better man, and this will be a better world for all.

"Moving on" has always been a painful concept for me. I'm now 51, and can honestly say I've not know real security (food, shelter, warmth, friendship, medical care) until my later years.

In light of who I am, my disability and what I deal with on  a daily basis, I have to acknowledge this as one of the single most painful times in my life.  I understand though, that with pain come growth and change.

I currently have a good friend, who is actually staying with me, helping me sort out the house and do what needs to be done, but I find myself in a quandary.  Troya was very special, we shared so much (of our affect) as being the same that we connected on a deep level, that people could only hope for in their lives.  Since her passing, I am really feeling the pain of the loss of this.  With Cameron here, staying with me, she loves and respects me, is selfless, goes out of her way to hep others, is understanding...yet I see, that neuro-typical people, even when they "understand" what we are going through, don't really understand.

I suppose it is also unfair for me to expect them too.  I have always been charming, and I can always gain initial rapport upon meeting almost anyone, but after they have been around me a while (Cammy has been helping me here some weeks now), they begin to see what it is really like living with someone who isn't neuro-typical.  They will try to understand, but often become frustrated, hurt, angry.

I'm having difficulty with "I need to be alone, I need my space and lack of stimulus, at the same time, I acknowledge that I cannot make it alone. "

This is certainly true for everyone, including neuro-typicals, but only to a point.

Unlike folks that are distinctly ASD, but not ACC, those of us without a Corpus Callosum would like to be social, but we know, from experience, that it often does not end well, that we, or the other party will misunderstand in communication, feeling will be hurt...

I can't speak for other with my condition(s), but I know that because of this, I often avoid social contact, and when I do have it, I try to have it in a certain "context."  It can honestly be a lonely, (horribly lonely) experience.  Not that I don't have some "friends" but for the most part they are "friends at a distance."

While sometime I actually long for social connection, I have always been aware that I was different, processed things differently, "thought" differently, and that more often than not it lead to argument, or hurt feelings, people even being violent towards me, my own family rejecting me and estranging me.

This is different from mere "social awkwardness," which is real, exists, and is a separate issue altogether.  My traits are not "psychological" traits (purely, in today's understanding of that term), mine are, for the major part, "neurological" or "neuro-psychiatric" traits.  They aren't by choice, can't be "trained" out of me, etc...  This is not to say I have no recourse to a full life.  Learning how to live with who I am, and "get the best out of the machine" is by far the more productive way to live my life.

I continue to work on my book, "A Boy With a Whole in His Head ~ A day in the life of a man born without his corpus callosum" (C) JS Galbraith 2010 , as well as continue in the formation of my ACC Non-Profit, and several other projects...and as the internet acronym goes, lately I"m just smfh, thinking "Wow, I'm beginning to find my niche, and already I am making a difference in people's lives" in utter dumbfounded wonder.  I owe my thanks, love and gratitude to Troya;  she was both the candle who passed on her flame, and the catalyst for incredible change in both of our lives.  It is for this reason my book will be dedicated to her.

I imagine the pain of "loss" will remain for a long time, but I know I can never loose the unconditional love, compassion, wisdom, faith, joy, and the laughter; the patience and the firm resolve that she planted deep within me.  Already I see some sprouting,  and to my utter astonishment others even fully in bloom.

Ah Sunflower, weary of time,

Who countest the steps of the sun;

Seeking after that sweet golden clime

Where the traveller's journey is done;

Where the Youth pined away with desire,

And the pale virgin shrouded in snow,

Arise from their graves, and aspire

Where my Sunflower wishes to go! 

~ William Blake ~