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 ~

Will be back in 10, 9, 8, 7, 6, 5......

A short post to let ya'll know I will be back online really soon.  Look for my latest entries on "A Boy With a Whole in His Head ~ a day in the life of a man born without his corpus callosum."

Regards,

Justa Guy (Joseph)

To everything there is a season...

I want to try and focus the intent of this post, on a most extraordinary woman, named Troya Patch.  On October 14th 2013 my dear friend and spiritual sister returned to Great Nature at 6:30 am PST  

Troya battled Ovarian cancer for over 7 years.  She was there for me when I was getting immunotherapy and chemo for my own condition (thanks to her, Kaiser, and many more involved I am free of Hepatitis C and mutating liver cells.)  

Troya was the perfect example of the silent servant.  She touched all she met, deeply, even if she and they only crossed paths for a moment.  While imperfect like the rest of us; she humbly accepted that part of herself, and focused on freely serving all, without measure, need or desire of recompense, motive, nor outcome desired.  

Accepting me into her heart and home, we shared " the good, the bad, and the ugly " about each other, to each other, and yet we both fell into unconditional love and trust of each other.  We both felt we were brother and sister, tied at the hip, even while very similar in important ways, very different in others.  We know " we've done this before, are doing it now, and we shall do it again " (i.e., that we are family, are in this together, and have unfinished business with each other.  

This post isn't about me, but needless to say, in Troya's company the seed of my life was nourished and protected, my hopes, fears and aspirations...  

Life changing information regarding my brain mutation (ACC) and Autism has come about, largely because of her support and encouragement.  If I had not come back to Southern California, been sick to death with Hep C, they would not have scanned my brain (I was having a host of neurological issues at the time)  and found that I was born without the Corpus Callosum of my brain.

Troya 11/12/2011

We shared words, ideas, knowledge and wisdom to be sure, yet Troya was the first person, in a very long time that I could shared the silence with.  So much can be communicated, in just a strong, silent, presence.

Troya:

Tomorrow October 21st, is the eighth day celebration of your passing...  

In this moment you stand as the Bridge
Looking into the Heart of  Ayn... 

Please watch over us,
Hearing our thoughts and prayers 

Present them before the All. 

And May that Light always reside in the hearts and minds of those 

Who remember your memory with kindness.

You can learn more about this amazing soul here:

https://www.facebook.com/pages/In-Memory-of-Troya-Lynn-Patch/460133107347514

*******

Thank you all to the many who have been there with me every step of the way...

I am truly grateful

<3

I need to take more time, so my posts may be a bit "in between"...

After all, to everything there is a season,  

While it is now to mourn, 

Soon the time comes for moving forwards into new Life.

Until that time,

~Joseph

Current Update

Dear friends,

My sister (spiritual sister/soul mate/closer than even my own biological family) is now in her final days of life having fought Ovarian Cancer for many years and outliving all expectations.  I need to spend all of these days till she passes, focused on her.

While I am still writing my book and composing blog posts I may not be posting any for at least the next month.  I know everyone understands.  Please, don't  give up on reading my blog though, I promise, just like Arnold... "I'll be back."

Please pray, as you are willing and able that Troya (my sister) has a most peaceful and blessed passage to the other world, but specifically, and only "for her highest well being, her highest good."  God is not so impotent that (S)He cannot speak to every creature in the unique language and ability only they understand.  I don't care if you are Christian, Muslim, Sikh, Hindu, Buddhist, Jew, Zoroastrian...etc...or even atheist.  An atheists heartfelt wishes and thoughts for someone (I believe) has just as much "power" and validity, our focus is just different...So I am asking all of you for your support in this most painful time.

THANK YOU ALL for supporting my blog and passing on the word about Agenesis of the Corpus Callosum.  Making it easier for ACC people world over, one person at a time.  I may be in emotional pain, but I have been gifted with something I've never really understood before...Grace, Serenity, even Joy amongst the pain....and I am so grateful, so grateful, I have no words to express it.

'umbly,

~Joseph

Round and Round We Go: Routine and Ritual, Remember and Re-enact...

Routine and Ritual, Remember and Re-enact,

On a child's carousel;

Up and down, round and round,

Familiar faces and places again and again:

In a blur of Einstein motion...

This is (in part) what my life is like.

Individuals with Autism and FAS, as well as many with ACC have a disconnect between volition, and action.  This often and also shows itself as one or an other form of Apraxia.  Apraxia is a disorder of motor planning, which is either acquired or developmental, but is not caused by uncoordination, sensory loss, or failure to comprehend simple commands (which can be tested by asking the person to recognize the correct movement from a series)

One of the aspects of living with such neurology can be a great sense of frustration, never feeling like we are able to accurately express and perform our needs, even while we do so, but inconsistently.  Studies show disorder in the area that is referred to as executive function.

Executive function is an umbrella term for cognitive processes that regulate, control, and manage other cognitive processes, such as planning, working memory, attention, problem solving, verbal reasoning, inhibition, mental flexibility, task switching, and initiation and monitoring of actions. The executive system is a theorized cognitive system in psychology that controls and manages other cognitive processes. It is responsible for processes that are sometimes referred to as executive functions, executive skills, supervisory attentional system, or cognitive control. The prefrontal areas of the frontal lobe are necessary but not sufficient for carrying out these functions.

It might be helpful to understand working memory as the RAM on a computer.  The RAM in itself, is only a temporary processing function, taking information from the hard drive (long term memory) and swapping bits of this information back and form in complex combinations at the speed of light (practically speaking?)  Our working memory has/is "faulty RAM."  Often under an ideal condition it can work rather well, but when the system receives any demand that taxes it's speed the entire system can literally shut down.  

At other times, the "RAM" will in fact attempt to work, but will be swapping incorrect data, making correlations where none exist at all, and coming up with erroneous conclusions.

On a purely psychological and subjective level, this leads to incredible self doubt about pretty much everything.  Whether or not it is acknowledged consciously, we can grow to doubt our very sanity, integrity, and mentality.  

As I have educated myself on my condition, this in itself has been a form of great relief.  The very anxiety we would hold about all of this, can be a great cause of pain and dysfunction, yet when it is discovered and accepted, at least I can speak personally about this, there is a form of great relief.  I have and am learning to relax more, not doubt myself, but doubt my "processing", to use double/triple references and checks, comparing my perceptions to those around me who love and appreciate my difference.

Sometimes they will in fact point out that I am completely off the mark, not in judgement, but out of love, and that can, but doesn't always, help me resolve the reality of the task or incident at hand.  I am so very blessed to have this in my life now.

One of the way we ASDs, ACC folk deal with this is routine and ritual.  Externally to the untrained eye this can appear as OCD but (in my opinion) is only loosely related to that phenomenon (in the best of circumstances..)  You see, if I am not prompted, I will not remember to bathe, to brush, even to toilet and eat. This is a bit personal, but I am largely unaware of my bowel or bladder until and unless it has gotten to the point of actual pain and distress.

Sometimes if the event goes against my logic of routine I cannot understand it.  Growing up and baseball is an example.  I could not remember (process actually) which direction to run (while at the plate) because it is illogical to run counter clockwise (in my brain) and they are all running widdershins (counter-clockwise), and I could not get myself to do it, and I would just freeze. and not run.  NOT to mention team sports? omfg NO nonononononoNO, I can't read anybody, why would you even want me on your (sports/aggressive...etc...) sport team?

Lists don't really help, at least not without constant prompting from others.  I can look at my ADL whiteboard (which lists those things I need do on a daily basis) and convince myself I have done something I haven't, very easily.  Now I have an Aid who follows behind me, and she'll ask me "have you done thus and such?"  I might even tell her (fully believing) I have, when I have not, and she'll see that, and won't argue or judge, but say something like "no, look, you haven't yet!" , and actually stand there and make me perform the task, or imitate it for me to copy.  Only so long as the demon in my closet (inconsistency) arises and throws me off the go-round, and I have only my rites and routes to guide me as I hold on.

All of my life, my parents, my family, some "friends" judge me on what appears to them to be wild inconsistency.  My own father branded me, as my brother did his own son a "psychopathic liar" refusing, or to be fair simply not able to comprehend what was going on.  I have absolutely no doubt in my heart and mind my parents loved me, tried to help, but they also had their own issues (don't we all?  I'm not in any way singling them out.)

Most neuro-typical people look like this:

"I HATE broccoli" 

OK, so you say, no problem?  This means they will always hate broccoli. This is NOT the case with someone with Agenesis of the Corpus Callosum,  Many things individuals understand to be permanent character/personality traits in us vacillate, change and morph continuously.  It looks like this:

" I HATE broccoli, I have ALWAYS hated broccoli"...and a week later you see me chowing down on broccoli and think I'm an outrageous liar.  But the truth is, I don't even know right now who that person was  who hated it....It is simply not even there.   Right now I think it is the greatest thing since sliced bread.  It is as if our internal sense of self is malleable to the point that it confuses and terrifies those around us.  OK, this was a silly example.  To be be honest, this has been an excruciatingly painful part of my life until I  began to understand what I was all about.

One expression of my obsessions, and then I'll move on to an other equally expressive and articulate rendering of the same obsession.  The Emperor swaps a new set of clothes.  But he never changes.

Many of you that know me, know also of my love of spirituality and religion, philosophy and psychology.  Here it looks much the same, but with a twist.  God has given me the gift of holding on to the "Golden Thread" the Common Root that exists in the aspiration of mankind toward growth and change.  This may be true, but like any other ACC folk, I am at once both craving for, and extremely uncomfortable with black and white.  Truth can never be "black and white" to me this is simply not logical.

By the age of thirty I would study foreign language, read the Quran, the Bible,  the Buddhist Cannon, the Vedas, and many other world religions largely in their original forms and languages. 

I, like many of us found I could legitimately and honestly chameleon myself (not in a hiding way, but in a belonging way) and subsume doubt by doing so, embracing one faith, then an other, and an other, because I would get to the point where I would experience the limitation of that form or discipline.  

Furthermore, always my course of study was not dabbling, I became utterly absorbed into it and it into me and "could not imagine anything else."  It is a personal belief of mine that this very thing is at the core of much human suffering in the name of God.

Saint John Chrysostom one of the pillars of the Holy Orthodox Church (so called "oriental" Christianity) was known to have said "we know without any doubt the fullness of Grace in Christ exists in the Sacraments of the Holy Church, but let us not be amiss and believe to limit the almighty Grace and Power of the Holy Spirit to act, when and if He will without regard to the doctrines and ways of mankind."  I believe he was a truly holy man, and that he was exactly RIGHT (in this:) that True God/Truth, Love, Light, "God" cannot be so impotent that He/She is unable to speak to each and every living and non living being in the universe in a language that only that one can understand.  

I'm learning to trust that innate Love and Compassion I have always had within me, beyond any forms.  A dear one shared with my recently, the more existential and concrete our experience of the Divine in our lives, actually all of the forms that define that begin to dwindle, break down in it's Light.  This is my life's experience...Recently I am experience "grey" for the first time in my life...a "not knowing", a "resting" in Grace....and it comes with absolute peace and stillness, even if in my mind and world around me I'm going through hell, that "rest" is always in the Center.  I'm filled at once with the pain and the Grace of life, simultaneously and reveling in it.

A Love of my life, my God-sister Troya lay in the room next to me, soon transitioning to new Life and possibilities.  I lost my grandparents, and other relations and loved ones, was neither allowed to be present or mourn.  I have been terrified of my emotions all my life, because of executive function issues, they have always been either explosive or worked and completely subdued until I had a meltdown.

Yet now, in the manner I mention above, my heart is breaking, and there is so much pain of loss, incredible agony...and yet, the emotion I'm feeling is largely modulated, meaningful (I can understand both it's source, and have an internal dialog with it, allowing it to heal me instead of wound me)  This is largely a new and unfamiliar experience with which I have no past reference to go by.....

I am filled with gratitude for Life in all Its forms, for my chosen family who loves me unconditionally, and yes even my biological family who largely has rejected me.  Each and every one of us is travelling this Grande Path, there is none that does not suffer, nor love, nor grow, nor change in exactly the same way in the depth of the human heart.

My most 'umble thanks and gratitude,

~just a guy

Great Article on my Congenital Defect Agenesis of the Corpus Callosum

An absolutely outstanding paper on research related to Agenesis of the Corpus Callosum can be found at:
http://www.thecorpuscallosum.com/

Sawing Logs and Building Bridges...

I've long wanted to write a post in more detail about the subject of sleep in regards to living with Agenesis of the Corpus Callosum.  Again, the information I share, is tempered by my personal experience, and I recognize that everyone with ACC "shows up the same but different" (our experiences and abilities/disabilities in re: ACC are unique in each person that has the condition, although certain traits and neuro-cognitive expressions are pretty much seen in everyone with ACC, although some are loath to admit this, even to themselves.

Many studies are showing the importance of sleep even in the neuro-typical brain, let alone the ACC brain.  

Durmer and Dinges study Neurocognitive Consequences of Sleep Deprivation immediately comes to mind, although there are many more studies, and particularly those in regards to memory, such as the Sleep-Dependent Learning Review 

and Memory Consolidation study by Walker and Stickgold.   More recently UCLA scientists discovered that the sleeping brain behaves as if it's remembering something.  The exact same memory patterns observed in live scans for a given task or even are "rapid fire repeated" throughout the night.  Sleep and dreaming are the brains way, it seems, of consolidating and organizing, then coding for retrieval, our memories.  

Getting back, for a moment to neurocognitive effects of sleep deprivation, keep in mind the studies are referring to the so-called "normal" (average) human  brain. Within 24 hours of sleep deprivation a "normal" experiences rapid cognitive and memory decline, decompensation of the brain's executive and regulatory functions.  If I were to remain awake for 24 hours, I would be subject to severe Transient Global Amnesia, the inability to regulate emotion, attention, energy...I would begin to confabulate and become almost stuck in my imagination, and even out and walking around it is as if there is a "dream" overlaying every waking moment, distorting it.  At worst I can have a complete meltdown and TGS usually goes along with that.  

Sidebar: On the subject of meltdowns:

One of the most common misconception about meltdowns is thinking it an everyday temper tantrum.  The parents or caregivers of, or adult with ACC and/or ASD are often scorned by members of the public as being unable to control the individual.  It is important to point out that while the physical aggressions associated with this type of escalation and meltdown appears similar to a temper tantrum, the two events are completely different.  

 A common childhood temper tantrum usually is the result of a person, typically a toddler, either being deprived of something that they want, having something taken away from them.  It is an attempt to manipulate an individual, usually a parent (or a caregiver or another toddler), into getting their way, and therefore requires that person to be actively involved in the tantrum.  If the parent is able to completely disengage from being the “audience,” there is no benefit to sustaining the tantrum.  Likewise, if the parent gives in, the goal is achieved, the tantrum was successful and there is no need to continue.  During the course of a tantrum, the toddler may pause the disruption to check to see if the parent remains engaged.  They may be distracted from the tantrum by being offered an attractive alternative.  Sometimes the threat of discipline is effected at thwarting a tantrum, especially in older children.  Finally, despite the fact the tantrum may appear reckless, the child is seldom out of control.  They are not likely to harm themselves, others, or objects that they “treasure.”  If an injury occurs or they damage a favorite object, they usually will be “shocked” out of the tantrum and immediately will become focused on what has just occurred.

Since escalation/meltdown behavior is not a form of manipulation, an “audience” is not required, either to precipitate or continue the behaviors.  The individual will not check for engagement, and the participation (or lack thereof) of the caregiver is of no concern. It is a reactive mechanism that causes the individual to lose control.  Even if the event begins as being goal-oriented, once the incident escalates to meltdown, obtaining the goal will not quell the behavior.  Likewise, if an alternative is offered, even if the alternative is highly desirable in most circumstances, it may not be acknowledged during escalation and meltdown.   

Literally, during the course of escalation and meltdown, the person with autism is losing or has lost control.  They may even know that they have lost control, but are unable to regain control on their own.  You may need to help the individual regain control.  

Remember: attempting to resolve the meltdown by threatening disciplinary action is both ineffective and not appropriate.  The individual with ACC or ASD will not have the ability to understand the consequences, and even if they can, they will lack the ability to alter their behavior.  In fact, such threats may very well add stress, further aggravating the overstimulated individual and worse an already deteriorating situation.  This is also true of just about any physical interaction with the patient, even gestures intended to be reassuring.  

During meltdown, the person is not able to process how their actions and behaviors affect others.  In other words, if there is a chair in front of them, and there is a desire to throw the chair, they will throw the chair.  While they may not throw the chair purposefully at an individual, they will also lack any regard of individuals who may be in the line of fire.  This is true, even if the bystanders are regarded as friends.  They will not be able to realize (at that particular time) that throwing the chair may cause serious injury if it strikes someone. Unlike a temper tantrum, the individual engaged in a meltdown will lack any protective instinct to avoid injury to themselves as a result of their actions.  If injury does occur, it will either have no effect on the meltdown, or it will increase the severity as a result of the additional stimulation.  Favored objects or things will not be avoided, consciously or subconsciously, from becoming damaged in the wake of the event.      

Ok, now...(just had to get the above point out...I appreciate and acknowledge Autism EMS from where I got the above quotes. )

As my last Neuropsychiatric doctor observed, "normally they would code (DSM) my presentation as dementia, but that can hardly be appropriate as dementia is seen as a loss of past function.  The memory, cognitive and sensory decompensation is atypical in that he has never fully enjoyed unhindered use of these functions." (He was here speaking of me "at my best".)

It is true, I benefity greately from simply being constanly prompted, and I don't like the term, but really "nurse maided."  If there is another person around me who can provide me cues to remember and practice my ADLs more consistently, and keep me "grounded", I can get tons accomplished, but without prompting and direction I too easily loose my way.

Now...imagine my brain on one day without sleep.  I've been told, it is more like what you would experience after 72 hours of (actual) non-sleep.  Dementia, psychosis, paranoia, fear, mental and emotional paralysis, stop eating, stop bathing, stop body care, live 24/7 in a fantasy in my head and not be able to get out, admission to a psych ward (which, thank god has been a very very long time ago now), abuse by police or those in authority not understanding what is going on with me (why I always have a MedAlert on me at all times now.)

I don't know if I actually coined the term, but I started using it some 15 years ago...I mean Sleep Hygiene.  What this is, is thinking about our sleep, much the same way you would think about bathing the body and keeping it disease free, or logging of your computer so you can defrag the hard drive (consolidate your memories).  

As it turns out, we are building bridges (literally synapse) in our sleep, regulating memory, emotional, activating the immune system, healing the body, all of these go on hyper-drive when we sleep.  

It has also been shown that in those with ASD (autism) when we study their brains (live) there is a much higher metabolic process as well as many more areas of the brain firing off and exhausting neural energy, than seen in the neurotypical brain.  I know this is true, just by personal experience.  I am extremely sensitive to over stimulation, and my brain goes on "hyper alert" mode, and this is extremely exhausting.  Also just navigating social situations is the same.  This is not a "psychological" issue with anything social, it is the result of my wiring not being able to easily interpret the signals and cues others are always easily giving and receiving.  

A two hour meeting say, and especially if I don't know everyone well, will lay me out for a couple of days, so stimulate and overload me that I will hide, it is either that or meltdown.  

My skills of meditation and the like have made an (the) enormous difference in my life, and even at my worst today, I am better than my best of yesterday, and so I am pleased.

I want to say to parents of ACC children: please start young and instill almost "ritualistic" repetition and discipline with sleep. When your child is old enough, explain to her/him how important sleep is for our special brains to perform their magic.  Sleep is far more important that is being regularly acknowledged publicly by the medical community.  And for us, it is MORE important than THAT....(off my soapbox now.)

I say the above, acknowledge the problems many with ACC have with sleep.  I have had, and continue to have lifelong sleep issues, but I work very hard to make sure I've got enough. (by the way, including my daily nap, I absolutely need about 10 hours, to function like a normie.)  Even my pop pop took naps throughout his life.  UCLA has shown that an afternoon nap markedly boosts the brain’s learning capacity, take a look! (oh, and give yourself a 20 minute nap daily, (if you can't you can train yourself to nap, it works !!! )

Well, I gotta go build some bridges~~~

~joseph

Out of the Shadows & Into the Light...

I am overcome with the fragrance of roses...

hidden & contracted inwards with great force

the rose whirls in upon itself...

All the sudden I wake up and look around and think:
"HEY, I'm a flower in the garden of manifestation,
as are all living beings! 

Blooming in to Life sans any limitation

of manifold colour, size, or distinguishing characteristic

flowering in full abandon,
filled with the taste & scent of amrit.

surging into Life...

then comes wilting, fading,
death and descication

but the flower cares not

its glory lasts but for a moment.

and is no more.

 _____________________

"
I suppose this isn't strictly speaking, going to be an "ACC" post.  What I mean is I want to write about the often common experience of any 51 year old man, and then perhaps, tie my  ACC into it, how it shapes the experience.

I do feel, very simply, that our lives are like a roller coaster, and for 51 years I have been climbing the monster drop, higher and higher, increasing my kinetic energy, storing it and waiting...Last year, for me was reaching the top and coasting.  At 51 I feel like gravity has taken hold, and I'm coasting down the drop, full speed ahead, with no (relatively little) effort compared to, say, mmm, 25 years ago...

Thing is, I hear and read many men my age talk the same way, more or less.  That's kinda cool, makes me "average."  Amusing, I've never been accused of being "average."

Anyway, things are easier, smoother, flow better, more consistent (as consistent as one can be with ACC.)

I'm just fully confident and free to be myself (whatever that is ultimately) and to move in the direction of my intuition and creativity, the very things I have been supressing all my life, told they were "wrong" "didn't belong", aren't "worth" anything in the "real" world....well, I got news for you!

It is très drôle, really...

I realize that not only have I spent my life trying to conform to the "normal life" that my parents planned for me, but that in doing so, I have ever so subtly been jabbing myself worth in the heart, over and over again, deadening and dampening the spirit in me, the creative, productive, forward moving power of choice in one's own life.

It is quite sad though.  My parents literally have nothing to do with why my heart and mind have been tied to mother's apron strings.  Rather my false view.  My "rose coloured glasses, the grass is greener on the other side" view of my biological family.  This is not to single them out, they did the best they could with what they had and who they were.  I believe this absolutely.  

Beyond this, however, they have chosen willful ignorance.  The medical evidence is out there, and my ACC explains my whole damn life.  Yet they still choose to think I'm an immoral monster or some ridiculous shit.  I wrote them letters, sent them cards, for years.  Mother keeps these in a shoe box so that one day she can "give them to the police for evidence" !  My question who is the paranoid one here? WOW ??

In recent years I regularly wrote and sent cards and letters to family, with never a reply.  Then out of the blue, the first time he has called me in well over 30 years leaves a insane drunken voice-mail...

So, I thought wow, they are living their perfect little idyllic life and don't want me part of it.  Turns out my father's alcoholism affected my brother as well, whom I thought "Mr Super successful etc..." until all these years later when I found the truth I though they were "Norman Rockwell." sorry, getting off track, anyhow....

Today I am coming out of the shadows, kissing my closet goodbye. I will no longer be content hiding within the shadow of the dark place "society" puts those who are deemed "different."  Neither will I be effected any longer by the woulda-coulda-shouldas, or mother's apron strings.  I cannot describe the joy of knowing "who I am" & "what makes me tick", and furthermore, my own talents and specialness.  Who could ask for anything more?

Motivated, matured, confident, connected, creative...I'm getting to know new parts of myself every day.

I'm receiving assistance now, as determined by my case managers, and doctors, and finding that I am now thriving, allowing myself to concentrate on my personal skill set, and those things that I can and do excel in, and find a way to leave my mark on the world.  It is truly a wonderful life, a wonderful journey.

The pain and discomfort of watching a loved one dwindle away, it hurts, yes, but it adds to my overall experience and connection with this person, spiritual sister, friend, co-hort, that I love so much.  She will not leave me, or "here", or "life" or anything such as this...rather transitioning to yet a different expression of perfection.

I am blessed to be at the side of her meat-puppet as she transitions...

She encouraged my finding my center, my confidence, and accept all parts of myself without limitation, understanding they are all necessary aspects making up a whole, the whole "image" we believe/have of ourselves...to function in this world.

To Infinity and beyond...

And that it is simply OK to be different.

The sure thing about inconsistency  one of the hallmarks of ACC, is that it is a consistent issue.  It does make life more interesting, colourful, dramatic, (you might think) but it wears upon the soul, if one thinks oneself only one's thoughts.  I am so much more than my neurology or mental processing, I am filled with possibility  and wonder at the grandeur of the Unity / Universe.  

I now have a 51 year old body to slow me down a bit, (thank God for small miracles LOL...) "

We now return you to your regularly scheduled programming. 

_/|\_

~j

Independent or Interdependent?

Always something new to learn, become aware of. Always somewhere to nudge, stretch, stress, and strengthen or transform. Today is no exception! One of the ways I like to describe what it is like for me with ACC is socio-emotional dyslexia.

It really is an apt description, when you consider that the most common "occurrence" my life is inconsistency. In my case, my "person" (felt sense of being, inner-sense of self) is something far more fluid than neuro-typical folk.

We not only deal with memory and communications, social and emotional glitches, most people will deal with one or more of these, but over a lifetime rather than as a daily occurrence.

For example, I will hold strong convictions on one or another issue.  Then I will wake up one morning and feel strongly convicted of perhaps an opposite or alternative view on the same issue.  As far as I'm concerned though, I haven't "switched" from one to the other.

Lord Brahma the Creator

with

Four Faces

That other day, that other person, his convictions and his reasoning behind them, vanish, and in there place an other.

This is not through any mediate process, like careful consideration and planning, or even obsession.  The more unusual thing is that who " I am " now thinking about this, cannot even comprehend that other position/thought/ way of looking at things.

I know (because I have spoken to people about it all my life) that there are those that say "you are just not trying hard enough" when the opposite is true, I spent much of my life completely obsessed with what the hell makes me tick, so to speak. For me, it is much the opposite.  I can experience it more like being handcuffed to one of those mega roller coasters and be forced to ride it again and again and again, with absolutely no choice in the matter.   I think on this note I hold to the words of Swami Satyananda Saraswati when I was sharing my ACC with him, he said "isn't it a good thing that you are not your mind?"  I am in no way "defined" by my having ACC.

You find many ACC people along a spectrum in much the same way you do children and adults with ASD. Also, understand what spectrum is referring to.  It is not generally referring to anything remotely similar to the marks on a 12" ruler, or from "A to Z" etc...  Spectrum is the the rainbow, it consists of many millions of gradations of light and color.   

For example I have a very very high verbal IQ, I can write (obviously), and I can speak on a given topic (monologue), but even though I can present myself comfortably in social situations, I find I am very often misunderstanding someone's intent.  Just this week my Case Manager said to me quite clearly "I think you are misunderstanding what I told you."  She actually picked up on my cognitive mistake and while I was thinking she was quashing something, she was actually telling me how she was going to help me with it.  This is not at all uncommon for me.

So when we refer to a spectrum, I think of it more like Swiss cheese (I used to say I had Swiss cheese memory), because I can be high functioning in one area, but low or non-existent functioning in an area "right next to it" on the spectrum.  For example, I use words well, but fail when engaging in extensive dialogue of any kind.  I can charm a person, gain rapport, but not know what the hell to do once I have that rapport.

I can wash dishes, clean house, but not consistently, literally in  the middle of a task, I will think of something and just walk away into an entirely different thought pattern/thing to do and the old one literally just vanishes, I don't choose to ignore it or forget it, it is simply not there for me anymore...(but may pop up hours later in the middle of an other task, doing the same thing, causing the same "interruption" that occured earlier when I had "lost" it.

While I cannot speak for anyone else with my congenital defect, I know that I have had a constant struggle with things like my own identity, and independence.   I  do not want  to need help, just getting through the "average person's things" on a daily basis.  Sometimes I let myself feel less a human being because I am (in truth) so utterly dependent on kindness and concern of others for my well being.  Left to my own devices, without any external prompting at all, I can become much like that steel ball in the arcade games being thrown all over the place, but never getting anywhere, locked in a perpetual bumper car cluster fvck....I just baiscally wander in my imagination and tie that to whatever is going on around me, and, get quite lost.

Having someone around me all the time serves as an anchor to the here and now, to my bodies needs, first of all, then my mental and emotional, social, cognitive and communicative needs.  I often try to explain what it is like for me this way.

I can do most of the same tasks as any other person, however, (and the latest science is bearing this out, at least with ASD brains) the studies are showing that non-neurotypical folks like us use  far more "processing power" in a 24 hour day, than a neuro-typical will in a week.  I'm quite capable of some amazing feats of art, beauty, language, image, creativity, however this remains dormant in me, largely because I have used so much "processing power" just trying to manage my ADLs consistently...nothing left to do anything else with.... :(


But change is a comin'....

Working with my medical doctors at Kaiser and my Case manager there they have helped me get access to IHS or in home services.  This is a game changer  for me.  I'm at once excited, but at the same time ambivalent.  I say that I have cut the apron strings in my heart and mind, but I fear it is not so.

I find so much that I am still slave to the expectations of my biological family and of "society."  I don't wish to be judged or seen as a burden. In fact I am not to be judged nor am I a burden to anyone.  Because I have access to this help, someone to come in, and help me remain organized house hygienic and clean (me too, I do have to be reminded sometimes) help me navigate appointments.   It doesn't always happen, but often the stress of some interactions can trigger me to melt down, pretty much anywhere at any time.  I have never, nor would/could hurt someone, but I have broken a fair share of dishes, doors, walls, windows, etc...I find person on person violence abhorrent in the deepest sense.

I'm a 51 year old man, so in the eyes of the world, a melt-down can appear rather ugly...and to be fair, they likely do not know what they are observing, how could they?  I do call for compassion and acceptance, not of me in particular, but of all people and differences.  I do call for a world where on a rainy night, George Zimmerman would pull over, and offer a young black man with a hoodie a ride home.

There is far to much ugliness right smack dab up against the beauty of this world.  I understand (in some sense) the dilemma of the young black man in America today.  How is that you ask?  By being profiled, and abused by "officers of the 'law' " sometimes beaten, and far too often taken away by police brutality.  I fear this myself.

I fear being misunderstood and injured, beaten or worse.  This is for good reason, I have been beaten by

police before and literally dumped off the side of the road, while in a melt-down, granted this was over 20 years ago, but it still happens to others with DDs all the time.

So, I had a lifelong struggle between my own independence, and the apron strings in my mind, leading back to the expectations of biological family and society.

Yesterday was the first day, and my new IHS worker a lovely older lady who raised 7 children (she lost one of them) who has being doing in home services for many years, came to my rescue.  I have had all kind of apprehensions about letting someone into my home, etc, and even just the social aspect of it, do they understand my disability, etc.  But, in this case, my fears were unwarranted.  She helped me accomplish more in three hours than I  could do in a week, and with far more attention to detail than I am consistently capable of under the best of conditions.

However everything has a "payoff" right?  So I continue to struggle with this independence question, because it just seems so root, so primal, so to the point, Yet I continue on some level to struggle with it.  If I admit to my dependence in some or another area of my life, it frees me up to see where I am independent.  Furthermore it speaks of the interdependence of all things; something I not only believe in, but experience  directly on a very deeply.  Taking it a step further, there are those in this life, I myself am meant to reach out to, to help, where they themselves find lack.  So, there is a balance in there somewhere, I've yet to fully experience it.

By allowing others to help me in the areas in which I have most need, and can't function like neuro-typicals, my productivity, creativity, focus, mental elasticity all have a chance to flow, not bogged down trying to resurrect a dead horse....it dead, it be gone, it ain't comin' back...move on...

As I observe the world we are bent on classifying our experiences into black and white.  Yet not only do I think "black and white" an illusion, I see my life and experiences along the spectrum of a rainbow.   Each person born is part of a wide (the widest) array of color and shape and form and attitude and quality, and skill, and weaknesses.

Not only that, but all the many sparks of color in the rainbow ebb and flow effortlessly, merging, touching blending, supporting, the entire array that is really an expression of Life in its most primal form. All of this in an interdependent web, ultimately my actions affection not only those I touch in life but the entire world, as well as myself.  The same, I believe is true of all living things...in level of degrees.

This is all the more apparent when we have begun to examine the data of countless satellites studying this Earth, Her systems, the many ways these systems all work together for the common well being of the planet, and how fragile and interdependent they are.

I think it is to the well-being of all involved that we continue to globally wake up to this reality, before mankind self-implodes... anyhow...

I feel a certain kind of "humility" (I do not really know the word I'm looking for) in that I have such needs as I do to help function "in the real world."  I don't think I'm comfortable with it, I feel myself squirming back and forth, even while this is exactly what my doctors and caseworkers are there to determine and help with and I'm looking forwards.  So much to do !

Imagine that we could all see one family.
This really is who we are
It's time we start acting it.

_/|\_