Monday, December 15, 2014

Diagnoses...for me...was waking from a nightmare

I often think of what it must be like for other adult ACCers who have not been yet diagnosed with the condition...I remember how it was for me.

While ACC like ASD is a spectrum, there are many (MANY) of us out there, suffering, struggling through life, without the benefit of knowledge of our condition.  I reflect on the self-imposed shame, guilt and self-hatred that was a major part of my psyche for most all of my life...

waking from the nightmare
It is estimated that 1 in every 4,000 births has some sort of collosul disorder.  Going undiagnosed, then, like me they spend perhaps their entire lives, misdirected, misguiding, misdiagnosed and not able to live to their full potential.  Many ending up in mental hospitals, prisons, or worse even dead.

When I was a child, I know they were aware of my brain anomaly, but even neurologists were quite ignorant of ACC and its implications.  Today, there is more knowledge of the condition, but it is still not routinely diagnosed.  As a child, doctors would say stupid sh*+ like "oh, he doesn't need that little piece of his brain, he'll do just fine!" and other such ignorant things.  Today, we know this is simply not true.

I mean, think of this rationally,ok?  As far as the human organism goes (not addressing soul or spirit) we are our brains.  At the very least, the brain is the receiver, transmitter, and processor of information with and in the "outside world."  How could a computer work, if you took out a RAM stick, or had a faulty hard drive, worse yet a faulty processor? It would not work normally, if at all, right?

By the time I was in my mid twenties I had already begun a hopeless journey through the mental "health" system, being drugged by countless medications, that, God know WHAT did to me, and in many cases creating problems and exacerbating any comorbid conditions I did have.  I had learned to hate and distrust myself, feeling that I was inherently broken, inherently imperfect (again, other than a spiritual sense, I'm speaking as brain/personality.)  I learned to hate myself, to treat myself with utter contempt, becoming my own worst critic and final judge.

Much of my life was, "couch hoping", depending on the good will of others to "take care of me."  When I was an adolescent, I was not, like my peers, thinking about career, thinking about how I would contribute to the world, no...I was thinking "who will take care of me."   I felt and believed myself to be entirely dis-empowered, unable to meet my own needs without the constant concern and care of others.

And there were and are SO many well meaning people in my life, SO many caring individuals, that throughout this time reached out and tried to help.  Yet, I would "wear out my welcome," as others realized I saw myself totally dependent, and unable to stand for myself.  Today, post diagnoses, I wish I could go back throughout my life, and thank all the many people who tried to help and guide me, some of which today, I cannot even now remember...yet this is impossible, so I write this blog.

When I was diagnosed with ACC, and shortly after with ASD, it was not like some might imagine, that the label took away my power, that I became dependent upon it...no, the opposite was true.  I was overwhelmed with the positive knowledge of who I was.  I was (in my eyes) no longer broken, I was no longer the character flawed misfit that my father tried to convince me that I was, and that I believed I was.  When I learned what it was that I was not, when I discovered what I could not do, it rather freed me entirely.  I no longer spent my life trying to do what I could not.  I began to focus on and discover my skills, my strengths and to lean solely upon them.  Where I found ability but weakness, I began to learn how to use my strengths to bolster and improve upon my weakness, but I no longer hated nor judged myself for that which I was not, for that which I could not, and will not ever be able to do.

I remember leaving the neurologist's office in 2008.  I immediately got on the payphone at Kaiser with Troya my BFF who I lived with.  She asked me "how do you feel about all this?"  I remember being SO overwhelmed with positive and negative feelings that I said "I just don't know yet."  She told me that this was ok, "how could I?"

Alongside the positives of diagnoses, and waking up from this horrible nightmare of life, came truckloads of bitterness and resentment for not having been understood and diagnosed as a child.  Unrest in my soul for the many years of my life "lost" because I didn't know about my ACC.  I still struggle daily, I pray, I do good works, in the hopes of releasing more of this angst.

I have learned since that time, that today many ACCers are diagnosed at an early age, even in utero.  This has given me tremendous comfort...No, I cannot change my history, my past, but knowing that it is different for children today, and knowing that I can blog, I can reach out, I can share my experience with others, well, it fills my soul with tremendous love, tremendous healing and hope for others like me in the future.

The Corpus Callosum Research Project
Next month, I will be partaking in the Corpus Callosum Research Project led by Dr Lynn Paul.  This research is aimed at more closely identifying the deficits associated with being acollosul.   And, while it is largely for me an exercise in self discovery, it is moreso filled with a lot of hope that I am helping others with my condition in the future...it is a great relief for me.  Stay tuned, because I am sure to blog freely about my three day participation in the study. I will be scanned again, and studied, and interviewed...and honestly part of me feels a HUGE sense of vindication for all my "lost years."

My own parents refuse to acknowledge my ACC even when I have provided them proof, but like I can make up a hole in my brain?  I'm hoping that Dr Paul's research will assist others in reaching out to my family and healing old wounds before it is too late for my elderly parents.  Hopefully I'll write more about this in the future!

My gratefulness, my thanks to all my many blog followers, and my continued hopes that my words offer some sort of hope, and instruction, and indication of how good life can become for someone with Agenesis of the Corpus Callosum.

Monday, December 8, 2014

Meltdown Madness; Sensory Processing Disorder & Cognitive Overload

A requested repost from an earlier date>>>>>>>>>

I want to talk about the ACC and ASD phenomenon of meltdowns.
First we must establish that a meltdown is not the same thing as a tantrum:

In a typical tantrum from either child or adult, one observes that they have control over their
behavior, choosing to engage in it.  The goal of a tantrum is specific to something one wants or does not want...if the individual gets what they want, the tantrum can rapidly end.  During a tantrum the child or adult focuses on others around them, communicating, yelling at them and drawing their attention directly.  Typical in a tantrum the individual is looking for a reaction, can talk, negotiate but with demands and yelling, even hitting or kicking or destroying property.

Meltdowns, on the other hand occur when the brain is overwhelmed with stress chemicals and has entered the fight or flight stress reaction; the stress building up to the point that the brain overwhelms and loses the ability to cope. 

In a typical meltdown, the individual seems to be in a panic mode, has no control over their behavior.  They are unable to talk or problem solve, negotiate or reason.  Cannot easily or at all follow directions, argue with you, generally so overwhelmed they cannot even engage with you.  Someone experience meltdown feels unsafe and reacting from extreme fear.  If you try to talk to them, it will be nearly impossible to identify the cause of their emotions, or any wants or demands. The two most common causes of meltdown are sensory overload, cognitive stress or social demands that exaust the brain's resources.

Rather than what is seen in a tantrum, the individual is not trying to gain something they want, but escape what is overwhelming them.  They will often attempt to flee or escape the situation, but not seek attention. The only time someone in meltdown would become violent, hit, kick, bite, scream is when you try and attempt to calm or redirect them, if you back away from them, give them personal space, remove any demands made on them and stop interacting, the aggression will likely cease immediately. Unlike a tantrum a meltdown takes time to dissipate, needing time to escape stress, regroup and  reset.  The one having a meltdown often expresses remorse for their meltdown and actions occurring because of it.

In both ACC and ASD meltdowns are precipitated by fright and fear. Fight or flight is triggered and the person tries to escape the source of stress and seeks proprioception (physical stimulus, hitting, self injury, rocking and other behaviors, as these release stress chemicals.  During a meltdown we do not want to interact with anyone or seek their attention, and desire to isolate ourselves, withdrawing for the stressor(s).  If we don't feel safe, we act against the people or property around us to get them to back away, or release stress chemicals.

Sensory Processing Disorder is commonly found in individuals that are ASD and/or ACC and is a common cause of meltdowns. Sensory Processing Disorder (SPD, formerly known as "sensory integration dysfunction") is a condition that exists when sensory signals don't get organized into appropriate responses. Pioneering occupational therapist and neuroscientist A. Jean Ayres, PhD, likened SPD to a neurological "traffic jam" that prevents certain parts of the brain from receiving the information needed to interpret sensory information correctly. A person with SPD finds it difficult to process and act upon information received through the senses, which creates challenges in performing countless everyday tasks. Motor clumsiness, behavioral problems, anxiety, depression, school failure, and other impacts may result if the disorder is not treated effectively.

Cognitive overload is a situation in which there is too much information to process or too many tasks to perform simultaneously, resulting in the individual being unable to process this information.  This results in a reduction or elimination of the executive functions and higher reasoning, producing anxiety and stress, and sometimes even triggering the fight or flight mechanism mentioned earlier.

This toxic dyad, sensory over stimulation and cognitive overload are part of the daily life of those of us with Autism and/or ACC, and should be understood by parents, caregivers, educators and law enforcement, concerned friends and family (I can think of a few more), and it would make our lives so much better.  Those of us on the spectrum tend towards a lot of self blame and self hatred because what is constantly reflected back to us is that we are choosing our condition/social-emotional situation, that we are inherently broken and "different."

It does not have to be this way.  We can learn to accept the differences of individuals and allow them room to grow and thrive in their own way.  But in order to do this we must educate others.  I hope this post has done just that.

Joseph

Friday, December 5, 2014

The Importance of ACC Research...

So, I am very pleased and excited to be asked to participate in a study about Agenesis of the Corpus Callosum...

Having spent the greater part of my life undiagnosed for either ACC or ASD, when I became diagnosed (and even today) I hold a tremendous amount of bitterness, regret and anger in my heart.  I know that with early intervention those of us with this condition can be taught to thrive, regardless of our disability.  I myself was not diagnosed until I was 46 years old...that, despite growing up with unidentified special needs, going to "special" school and the like.

Complete Agenesis of the Corpus Callosum
In those 46 years, I received many wrong diagnoses, everything from bipolar to schizophrenia, to God knows what.  In 2008 when I was diagnosed with ACC then ASD my doctors clearly expressed that all of these diagnoses were incorrect.  Today, besides ACC and ASD, I still hold the diagnoses of depression, PTSD and ADHD.  I jokingly tell people I am "alphabet soup."

It isn't just the fact that my outcome would have been different with early diagnoses...but all these wrong diagnoses, and treating me with inappropriate therapies and medications wreaked havoc on my mental and emotional health.  Until the age of 46, I carried around tremendous self-imposed guilt, shame and hatred, always knowing that I was different, but never understand just how different, or why I was different.

On top of this, I spent the majority of my life continually trying to do things and be someone  I was not.  The old saying of "doing the same thing, expecting different results, is insanity" applies here.  Prior to my being put on SSDI in my mid to late twenties, I had well over 50  job (attempts.)  The longest I lasted at any job was six months, but usually they lasted no more than a few weeks to a month, sometimes only days.

Now, I just want you to imagine what that would feel like for you, if you were me.  Can you for a moment imagine the shame and guilt, the self blame that you might experience, if you try and try and try and never get new results?

I grew up with two very hard working parents, and I never lacked for anything (physically/monetarily), and for that I am very grateful.  Yet my parents grew up in a generation that worshiped the so-called "Protestant work 'ethic' ."  I was constantly led to believe that the cure for all ills is just applying yourself harder, working harder.  And if you couldn't do this, in their eyes, you were morally or ethically flawed.

Like many with ACC and/or autism I am very intelligent, and in controlled environments I can test highly on IQ, and different functions, but given those same tasks in a real life uncontrolled situation I consistently fail to perform at an optimal level.  While today I am learning to accept myself as God created me, I still default back to being self-critical, judgmental and even hateful towards myself when I can't perform as an NT.  I'm learning to change this, but the change (any change really) does not come easy for me.

Next month, I am going to participate in a study on Agenesis of the Corpus Callosum under the wing of Dr. Lynn Paul and the Corpus Callosum Research Program and I'm incredibly excited about this.  My parents to date refuse to believe in my disability.  I had (and still have) major issues with confabulation, and was branded by my own parents a "psychotic liar" (which all of my doctors emphatically denounce as false) and even worse.  I've not had any meaningful contact with them in well over 20 years.  Dr. Paul is so well known, and her research is so well respected, I'm hoping that my parents get wind of this study, and maybe they can have a change of heart.

They (my parents) even accuse me of fabricating ACC and ASD.  And I ask you, how can I fabricate a literal hole in the center of my brain?  How can I fabricate enlarged ventricles that take up a major portion of what should be the occiputal lobes of my brain?

Needless to say, participating in this study has me feel that I am getting some retribution (not sure if that is the right word) and acknowledgement, even while my own family refuses to accept the facts.

There are many like me, adults with ACC and other comorbid disorders that are rejected by there families.  Hell they didn't even have the term autism until I was out of school, and ACC, these stupid doctors would just tell parents "he's missing a little part of his brain that he doesn't need."  EXCUSE THE F*CK out of me, but who in their right mind could say with an honest face that you don't need a piece (an extremely important piece btw) of their brains?

I'm not going to pull punches here.  I underwent loads of abuses in the so called "Archie F Hay Village School for the Emotionally Disturbed" including restraints, beatings, isolations and more.  I endured the ridicule and rejection of my own flesh and blood family...false accusations, blind judgements and flat out shunning.  To this very day, I have regular nightmares and night terrors about what was done to me in that school.  I am quite certain my parents did not know what happened, they did not want to know what happened there.

And, despite the fact that I have always had a very high verbal IQ, I was not able to, nor did tell my parents anything about those abuses.  I also underwent sexual abuse of relatives, which my own parents still insist I am lying about, not to mention the horrible bullying and emotional abuses from my own father.

Dr Lynn Paul
Dr. Paul, well, she is one of my heroes.  The research she is doing is already improving the lives of children and adults with Agenesis of the Corpus Callosum, and will have a profound impact on the lives of those like me born in the future.  I am so proud to participate, and feel a great deal of vindication (that's actually the word I was looking for earlier.)  IF in the presence of all this research and data my blood relations still refuse to recognize my ACC, to recognize my ASD and my differences, and why I was the way I was/still am I will finally be able (even though with great sadness) to wash my hands of any responsibility towards reconciliation with my family.  It tears my heart apart that my parents are both very old (77 and 80) and they may soon go to their own deaths never knowing what a wonderful and special person I am.

So, thank you Dr Paul, and also thank you Dr Sherr (another ACC study I am enrolled in) for believing in me, studying me, using what you learn about me to improve the outcomes, the lives for many in the future!

Tuesday, December 2, 2014

Adults with Developmental Disabilities, Accessibility, Poverty, et al...

I hope to share some of my personal experience, my personal pain and struggle in this post...Expect it to largely be my venting and stemming from frustration.

There are many diagnosed with ACC and/or ASDs that fall through the cracks of society.  Since the 70s there has been increasing funding and benefit for minors with an autism spectrum disorder, or ACC or similar disabilities.  Where society has utterly failed, in my personal experience is in the process of integrating us into the larger society.

For many of us adults in my age range, there is the added humiliation of estrangement from our own families.  Granted, the resources (to understand these disorders) just were not there for our parents as we were growing up, yet many such parents (as my own) remain locked away in their 1950s "psychology" of blame the victim or shame the victim.  Such is the case in my own life.

Both of my parents, very hard working, providing for me as a minor, flatly, and obviously gave up on trying to help me by the time I was 21 years old.  Even faced with medical evidence, they would rather hold on to their grudges, their anger, their "position of safety", not having to deal with guilt or shame in how they raised me.

Sadly, my story is not in any way unique.  Having talked to dozens of adult ACCers and ASDers I hear my story over and over and over again.  Basically, at 18, I was expected to "go out, get a job and move out", but as doctors now know, emotionally and socially I was still 10-12 years old...I very quickly got mixed up in bad crowds, trying to survive in a cruel world.  I even had my "spin around the block" with hard drugs, which years later was cruelly in evidence of my advanced Hepatitis C.  I went through a long and difficult course of chemo to beat it, and I DID thank God (though just in recent years.)

Throughout my 20s, 30s and even 40s, I went through the "mental health mill" of wrong diagnoses after diagnoses, sometimes even causing me worse problems with mental health due to medications that they were pumping me with.  I have been abused by people, by doctors, by clergy, by police, the list goes on.

Diagnosed with ACC and ASD in my late forties answered so many questions, and I've been able to at least improve my quality of life, and get the supports I need, at least for a while.  After the death of my best friend, who housed me and cared for me, I am again stranded in a place with no services, not even proper medical care...and society (pardon the language) doesn't give a shit.  My own parent refuse to believe science, refuse to believe a doctor's diagnoses...so I don't even have family.

What is society to do with the many DD'd people coming of age and being classified an "adult" when all the supports are taken out from under their feet because they are no longer a "dependent"?  Truth is, on some level I will always be a dependent and I cannot change that...so does this mean society has the right to throw me out as so much trash as they have?

I have an awesome friend, she like me is both ACC and ASD.  In many ways she is more functional than I and is trying to help me learn some much needed skills.  She is trying to move me out of the desert, even temporarily, until I can find a viable living situation where I can get my needs met.  We have even set up a fundraising site, we want to get me out of here by February.  We are trying to raise $3000, enough to move me, put my things in storage, until I find a more permanent solution (someone would be taking me in temporarily with my dogs, until I found reasonable accommodations.)  I have resisted up till now, using my blog for any appeal, but feel that I must do it now.  My social and emotional skills, distress tolerance and cognitive abilities are all decompensating here.  I am so isolated (in the Mohave, "Needles" CA) I can go a month without talking to anyone, and even groceries are a 45 minute drive away.

The link is https://www.youcaring.com/HelpJosephMove if anyone cares to help.  If you know of anyone that can help please pass the link along.  I'm truly sorry for using my ACC blog as a platform for this fundraiser, but it seems I have no choice.  I appreciate the fantastic moral support I have gotten from both the autism community and the ACC community, and now I am pleading for your help.

~Joseph

Tuesday, November 25, 2014

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

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

I am a rampant idealist. 
How so you say?  

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

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

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

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

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

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

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

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

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

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

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

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

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

~J

Saturday, November 22, 2014

Adult Diagnoses & Me...

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

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

Now, first the back story:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Thank you all for being part of my life.

Friday, November 21, 2014

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

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

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

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

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

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

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

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

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

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

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


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

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

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

Kim Peek




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

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







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

 

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

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

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

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

Wednesday, November 19, 2014

The Sky is Falling, The Sky is Falling

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

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

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

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

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

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

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

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

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

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

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

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

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

~Joseph

Thursday, November 13, 2014

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

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

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

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

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

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

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

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

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

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

~j

Wednesday, November 12, 2014

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


Repost from 7/15/14:

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

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

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

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

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

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

Stereotyping, Stigma, Psychological Discomfort, and Pity

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

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

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

Now to my biggest pet peave, paternalization & pity:

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

~Joseph

Tuesday, November 11, 2014

Come on over and sit a while...

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

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

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

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

ACC, an Orphan Disorder

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

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

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

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

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

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

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

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

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

Inquiring minds want to know.

Monday, November 10, 2014

Parenting This Special Needs Child or Adult

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

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

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

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

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

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

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

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

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

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

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

Thank you,

Joseph

Saturday, November 8, 2014

Acquaintances, Friends, & Conversation.

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

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

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

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

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

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

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

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

Thank you for listening!