Relationships~Too Quick to Burn Bridges...aka Waiting for the Other Shoe to Drop...

I want to write about relationships...everything from friendships to significant others, keeping in mind the old saw "if you've met one person with ACC you've met one person with ACC," my experiences are my own...

When I was very young, I recall trying to initiate relationships/friendships with enthusiasm.  I also remember this zeal dying quite early in my life.  Unlike typical ASD, most of us with ACC want to have friendships and relationships, but we tire of the cycle in which invariably it will turn south.  I have always been aware that I have the ability (in spades) of gaining rapport with people, it is just what to do after I have gained rapport that has always troubled me.

I'm charming, eloquent, intelligent, yet facing maintaining relationships I shrink at the task.

I suppose I'm jaded because in many ways I have given up trying.  I have come to accept that all people will come and go in my life, none will stay, not even family.  I can think of perhaps two exceptions to this, people I held dear and they the same of me, but unfortunately they are gone off this earthly plain.

Even besides the social difficulties present with my ACC, the truth is I am downright quirky, and I know it.  I know that my actions and reactions to all things of life can look odd or strange to those not looking through my eyes.  Again, the exceptions to the rule are those fully acquainted with ACC either because they or their loved ones are born with it.

In many ways, I just don't give people a chance to get close to me, because I expect that either they or I will burn the bridge that unites us eventually.  I have gotten so used to this happing that often I will jump the gun and sabotage a relationship, just to avoid the pain of them cutting it off and ending it.  I walk on eggshells, waiting for the other shoe to drop.

While this isn't the case in all of my life's circumstances it is for a large part of them.  I have come to accept and expect this so that when it does occur I'm not let down by it.  Every once and a while I am surprised by someone who, by hook or crook is exposed to me and my ACC and loves me not just in spite of it, but because of it.

Troya Patch

Troya Patch was one like this.  She so embodied acceptance and non-judgemental living that when I was first diagnosed with ACC she explained how she had already observed all of what I was, even prior to diagnoses and accepted me just as I showed up without and preconceptions.  It was this unconditional love and support that helped me through the initial discovery of my condition and beyond.

In a sense, it was she who taught me about unconditional love, or at the least demonstrated it to me so that I might model it within myself.

Even with all the above I've written about relationships and waiting for the other shoe to drop, Troya taught me first and foremost about self-acceptance. 

Discovering my ACC had two sides to it.  Immediately after I was diagnosed I experienced the "AHAA" moment, the light bulb over my head, the answer to so many of life's questions, the "why" of who I was.  Yet at the same time I remember looking at the brain scans with my missing corpus callosum and enlarged ventricles in horror and disgust.  The finality of being born with this congenital defect hit me like a ton of bricks a short time later.  Dealing with feelings of inadequacy, of brokenness, defectiveness, I was so grateful to have her in my life.

Troya would have been the first to admit how imperfect a human being she was, in fact, she would often laugh at herself, not take herself so seriously.  I also had this wonderful behavior to model, and I work daily now towards self-acceptance.

Those of us with ACC and ASD are always pre-judging our behavior. We over analyze pretty much everything we say and do, and second guess ourselves.  This is (for me) one reason that socializing is so exhausting.  On the one hand, we over analyze, on the other, through lack of executive function we jump the gun and over or under react to a given situation, then in retrospect beat ourselves up for it.  Day by day, little by little I grow some beyond this.  I don't know that I will never not do it, but through modeling behavior and learning to live with the hardware I was given life shines just a little bit brighter.

Another great example for me to model has been the many parents of children and adolescents with Agenesis of the Corpus Callosum that I have almost daily contact with, via support groups, email and in person contact.  These parents strive to both improve their loved one's quality of life while also working to accept them just as they are.  Needless to say, I didn't grow up with the best of examples in this regard.

Also, a great help have been the many adults with ACC that I have contact with.  They have shown me that we all daily rise to our own challenge, bravely and brilliantly, and that I am not alone in this.

This post has been more "stream of thought" than anything else, I had intended to go into a detailed analysis of relationships, but it is what it is...

Thank you for listening,

~Joseph

Sundowning...and Socio-Emotional-Sleep Hygiene

Not everyone with ACC has this issue the way that I do, but I'm convinced we all have some form of it.  I have had to learn and develop a really strict care for a pattern of "hygiene" in regards to sleep, rest, and destressing.  I'm sure it's even common with NTs that after a long day, their tolerance for bullshit goes way down.  If this is true for them, it is a hundred times more so for those with ACC.

As adults, we tend to be able to hide the effects better, although they are still present, but one can see the lack of this "energy hygiene" most obviously in children.  Often, I hear reports of children "misbehaving" in the afternoon, after school or in the evening.  In most cases this is not a behavior issue, more than it is an issue of socio-emotional overload.  If the child (or adult) is giving time to relax, and let go of the energy and anxiety of the day, and perform a "reset" as it were things would look a lot different.

Personally, by the time evening rolls around, both my cognitive and memory processes, let alone my socio-emotional capabilities most often experience an extreme decline.  During this, I cannot perform the simplest tasks or functions.  If then, I am pushed beyond my limit while in this space, it can get very severe.  I've experienced more than a few times complete fugue states, forgetting my name, not able to speak nor respond in any intelligible manner, not knowing where I was, etc...  The decline is pretty dramatic and destructive if I cannot get to a place of complete silence and privacy.

Skills that I have gained, especially managing my energy input and output have helped.  I practice meditation twice daily, I take power naps, I arrange to have alone time.  The alone time doesn't even necessarily need silence, it is the lack of engagement that I need in order to reset myself.  I am practically "religious" about when I go to sleep and when I wake up.  Even with an hour long nap during the day, I usually need more than 8 hours of sleep at night.  If I keep up my meditation routine, the need for sleep lessens but is still there.

In retrospect, thinking about the times I tried to work (I have been on disability more years than I have worked now) I recall being on the verge of a complete meltdown (at work) on a regular basis.  Me thinks had I the ability to get alone, quiet and reset often enough, this outcome may have looked very different.  But, as I had not known about my ACC at the time none of this information was available to me.

If all of this is true for me as an adult, it would seem that it is all the more true for children with ACC who have not yet developed the coping skills available to (most) adults.

The downside to all of this is that I have had to, as I said, be quite regimented about sleep hygiene and protecting my energetic and emotional space.  I could not even imagine what this would look like for someone working at a job.  Even with such skills as those learned in D.B.T., which, I might add have helped tremendously, the need for regulating my energy and my environment remain at the forefront of maintenance for my mental and emotional health.

This immense breakdown of cognitive, memory, social and emotional skills, this sundowning is a terrifying experience, especially if one cannot escape the stimuli that trigger it.  If I allow myself to get to the point where this occurs, the resultant effects of it can last days before I can fully recover from it...as long as I continue good hygiene in the matter this is far less likely to occur...

...a (not so comfortable) day in the life of this man born without his Corpus Callosum...

I Am My Thoughts and Feelings versus I *Have* My Thoughts and Feelings...

I wanted to write today about a specific area within Theory of Mind (ToM) .  People with ACC, in my experience, have a great deal of difficulty objectifying our thoughts and emotions.  Because we have difficulty with executive function skills, we also have issues with regulating our thoughts and our emotions, they are either "full on" or "full off" regardless of what they are (happy, sad, angry, peaceful, depressed, bored, etc...) and why they arose in us in the first place.

It is my experience that "it is so crowded in there" that there is no space, no room for our cognitive process to work with and regulate, and know the appropriateness of both thoughts and emotions.

While it appears that those with ACC fall along a spectrum, this is more or less true for all of us.  I have met ACCers with well developed ToM, with none, and everything in between.  I imagine the ability to work on and develop ToM also falls along a spectrum.  As I have mentioned in other posts, there are exercises that can evoke ToM in an individual...As mentioned above, often those with ACC find no "space" between themselves and their overwhelming thoughts and emotions, yet there are methods possible to create breathing room in the psyche.  It is this breathing room itself that evokes ToM.

I found personally, that I could not identify my thoughts and emotions accurately, nor express them, until I first related to how they made me feel in and as my body.  What I mean is "I'm feeling this 'emotion', how does it make my body feel? Do I feel it in my chest, my stomach, my head maybe? Is it pain, is it nausea, butterflies?"  You see, another issue with our ToM is that we can be very unaware that emotional states are felt in the body...yet identifying these feelings in our bodies is a first step in being able to cognitively identify and be able to describe/relate these thoughts and emotions.  Once we have identified how it makes us feel, this gives us a "handle", it gives us something to work with in a concrete manner.

For example, I get anxiety attacks.  I could not always tell you that what I was feeling was anxiety, to me it was just "emotions" and any tags I would put on them, wouldn't be accurate, they would likely be only what I think you wanted to hear. I began to work with my anxiety, and I discovered that this feeling I had was a pain in my chest and that I could hardly breath.  My breaths, I discovered were very shallow and rapid.  I felt like my stomach was this large unprotected vulnerable area, and I was afraid of anyone going near it.

So, the next step for me was not a cognitive approach, decidedly not psychotherapy.  The next movement in my process after identifying how this felt in my body was to do its opposite.  I "could not breath", so instead I made my focus my breath.  Instead of shallow rapid breaths into my chest, I would take long slow breaths, in and out, all the way to my belly.  I would not force myself to do this versus the other, but I would treat myself gently.  Every time that impulse of anxiety would move me back up into my chest and my breath would want to become shallow again, I would gently redirect my attention into my belly, and long, slow, deep breaths, in and out.

What happens to me is that there becomes a "space."  A space between the bad feeling in my body (anxiety) and the feeling of relaxation.  There becomes a realization between "this feeling" and "that feeling."  The space between these two things is where I exist.  I begin to understand, that I am neither the bad feeling or the good feeling, but I am something other than that. 

I began to realize that I had these feelings in the body, instead of feeling that I was those feelings in the body. This step, in my opinion, is extraordinarily important.  It is an objectifying of the physical effects of our emotions felt in the body.

Once I was able to objectify how these emotions felt in my body, I was able to push them away slightly at "arms length."  After I'd gained a lot of practice doing this, my cognitive processes began to latch onto these sensations in the body and label them "anxiety" vs "peace and relaxation."

This is a very simple if dumbed down version of the process I have used that has helped me develop Theory of Mind.  I have been taught even more refined versions of this that have improved my quality of life greatly.  I practice a form of meditation, that in itself evokes this process very quickly and distinctly with my thoughts and emotions.  It has not been an instant fix or easy process, but remains a steady discipline I have embraced that continues to produce useful changes in my cognitive and emotional life.

I'm convinced that almost everyone with ACC is capable of some level of this process in development.  I would think the only barrier to such development might be someone who is profoundly intellectually disabled.

I would add, that this process continues to go on within me, and will likely never "end" or complete.  This is as it should be, (I feel) as human beings are meant to continue and develop, grow, and change throughout a lifetime of experiences, not just "once and your done."  In times of extreme stress or emotional upset, I can and still do appear to "lose" ToM momentarily.  I will get so caught up in the thought or emotion and its feeling in the body that I have no "room" to maneuver, no space to think about it objectively.  When this occurs, I go back to basics, and begin the process all over again, as described in this post.

I hope this post has given ACCers and parents of ACCers something to think about, ponder and explore.  I have not gone into any great detail about this process, as it really needs to be tailored individually to the person who experiences it, there is no such things as one size fits all.

Should you have any questions or comments, you can leave them here, or contact me via Facebook in one of the ACC groups.  I would be happy to help in any way possible.

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?

" Why can't you just be normal like everybody else..? "

Am I jaded? Yes, perhaps I am....

My own father bullied me, almost on a daily basis with verbal threats and the sentence "why can't you just be 'normal' like everybody else?"  You cannot imagine this indignity, cannot comprehend what it does to a child's or adolescent's already fragile self-esteem.

Now, as there are two sides to every story, I can infer and recognize my parents wanted me to be "mainstream" as much as possible for my own hapiness" I would not be truthful if I didn't acknowledge this.  That being said, the absolute shame on my father's face and voice were obvious, even to me, who apparently cannot pick up on subtle facial and emotional cues.  In his eyes, I saw embarrassment that I was not "normal like everybody else."  His feelings more often than not escalated to frustration and anger about the same.

Just about the time that my Corpus Callosum would have kicked into high gear (if I'd actually had one), the time that I began to venture outside of family for a larger social and emotional circle is when he began his relentless negative mantra of disgust and shame.  Of course, I had no idea that mine was not a "normal" or average childhood.  I continually held myself  up to the rule of my peers and found myself lacking.

My father was also struggling with his own issues.  For as long as I remember he drank alcohol to excess and more so when under any stress.  He has also always had a problem with explosive anger, very often my being the direction it was vented.

I do understand, particularly for fathers, they want the best for their child and often think this means "measuring up" to their peers.  I do not think this necessarily "wrong", but one must ask themselves, about ACC children what is my child's "normal?"  Our wiring makes us different, and no matter the wishing, the trying the prodding, the hoping the wiring will not change.  Again, this does not mean we shouldn't strive for our child's very best, but we must strive for our child's very best, not our idea of what this is "supposed" to look like.

Individuals with Agenesis of the Corpus Callosum have different cognitive, memory, social and emotional processes.  There is currently no medicine nor therapy, nor anything else that can change this fact.  What we should hope for and strive for is our child's, or in the case of an ACC adult our own personal best.  Measuring ourselves strictly and only by our peers is not only counter productive but damaging to the psyche of a human being.  This even holds as true for the neurotypical individual, but more so for us.

As parents, and as individuals, we do best by learning about our child's or our own unique neurology.

ACC appears to exist on a spectrum, yet regardless of where on this spectrum an individual exists, research bears out very specific cognitive and socio-emotional differences with everyone born with Agenesis of the Corpus Callosum.  I know I spent far too many years of my own life in denial of these things, always hoping that the next greatest thing would "cure" me or "heal" me. Now this is the very think I strive to be healed of.  My true "cure" came about with my diagnoses of ACC.  Learning to recognize and accept that I am, in fact, different than one in 4,000 of my peers has done far more to heal me, strengthen me, to discover my own unique skills and abilities than any other single thing.

I no longer waste my time and precious energy and attention trying to fix something that is not broken.  It is who I am, and I am not broken, I am different.  Regardless of the hole in my head, I am a whole human being, possessed of unique skills, abilities, strengths, and weaknesses, not unlike my peers.

~Joseph

My Personal Toolchest for Living...

It will come as no surprise to the parent of an ASD or ACC child that the typical tool chest for parents of an NT child, for the most part, do not apply.  It isn't that these approaches cannot work, they certainly can, but there are aspects to personality and maturity that necessarily must be in place for these common approaches to have any value or benefit.

Having said the above, it is also important to realize that if you have met one child or adult with ACC you have met one child or adult with ACC.  What works with one need not necessarily work with another, and visa versa.

One must also understand that "tools" need not necessarily be "methods" or "therapies", but can and importantly do represent knowledge and understanding.  

The first and most important thing to realize is that children/adolescents/adults with ACC will and must learn in their own time, not by anyone's schedule, and certainly not using an NT individual as the measuring stick by which to judge them.  It should be understood that when someone has ACC we are to expect "their teens, throughout their twenties."  The age numbers mentioned are arbitrary, but the principle holds true.

By the time I was 13 years old, I had an above average intelligence, however emotionally I was quite a bit younger than my peers.  In my experience, ego development happens differently, at a different rate than NT children.  I'll not go into specifics, only because "ego development" is looked at in different ways by different schools of thought...I only wish to stress that the "normal" or average developmental stages look very differently for us.

Again, this is only my personal opinion built of self-observation and observation of other ACCers, but a primary thing "missing" or incomplete in many ACCers is Theory of Mind. ToM (Theory of Mind) is the ability to attribute mental states — beliefs, intents, desires, pretending, knowledge, etc. — to oneself and others and to understand that others have beliefs, desires, intentions, and perspectives that are different from one's own...in short the ability to objectify mental and emotional states, to "step back from them" as it were, and "operate them" as a series of tools.  Without sufficient ToM an individual experiences that they actually are their thoughts and emotions...they are too close to them to objectively work with them.

Normally children develop ToM at roughly 3–4 years of age and through a progression of stages starting at around 18 months with the awareness that their own mental states are distinct from those of others.  It is found children on the Autism Spectrum as well as Agenesis of the Corpus Callosum do not develop ToM sufficiently, and in some cases not at all.

ToM itself is also on a spectrum, let's call it, from the completely "naive" to actualized, to advanced...Throughout my own life, my own ToM was very weak and underdeveloped.  Even though I myself had an above average IQ, read many books on "psychology," my knowledge were more like Legos that I would put together in various ways, to make interesting things, but said knowledge was never applied to me personally in a way that I could use for my benefit.

My own parents and educators and doctors being unaware of ACC, would see me present as very intelligent, I could "speak the words they wanted to hear" but this did not mean I understood them and applied them as personal experience.  I went through hundreds (thousands?) of hours of "psychotherapy" that (even in my own eyes) were largely unproductive, useless, and even created more difficulties for me.

I began to experience profound shifts in my own ToM in my late thirties to early forties.  The primary tool that I used, and worked with over and over again were mindfulness practices and meditation.  I'm aware that many people have concepts of what these things are (usually incorrect ones), yet I've not found one singly more powerful set of tools than these.

Mindfulness, per say is borrowed from the system of Buddhist psychology known as Abhidharma.  It need not have any religious or spiritual overtones attached to it.  The tools could be considered more a way of being rather than a thing for doing.

The particular set of tools I use(d) are borrowed from the Zen school, and include:

Meditation- (This could look as simple as following and paying attention to ones breathing, their inhale and exhale for one minute, when distraction/thoughts come (and they will) gently return to following the inhalation and exhalation.

Being Awake-We are ACC or not usually distracted in our daily life, in the middle of whatever we are doing we slip into dreams/thoughts/fantasies of the mind, so we practice "coming back to the present moment" of whatever we are involved with, recognizing the tendency to "slip away in thoughts" and recognizing "coming back from the thoughts" to whatever we are currently doing.

Watching Our Urges-ACCers have trouble with executive function and regulation of many things, sleep, food, sex, anger, you name it.  Learning how to become aware of when an urge to do something comes upon on, just examining it and not necessarily acting on it, and watching it disappear just as easily and quickly as it arose inside of us.

Watching Our Ideals-Our ideas about how things "should" go, how they should occur.  Someone cuts us off in traffic (to give an example) and we think "they SHOULDN'T have done that!!!", but really, who is to say?  Are we in their heads, do we know what they were thinking?  Perhaps that "SHOULDN'T" is really causing me anxiety and suffering, more than getting cut off in traffic.

Accepting People & Life As They Are-When I stop trying to change a loved one, and accepted them for who they are I am able to just be with them and enjoy my time with them. This acceptance has the same effect for anything we do — accepting our peer, a student, co-worker, another child,  but also accepting a “bad” situation, an unpleasant feeling, an annoying sound. When we stop trying to fight the way things are, when we accept what is, we are much more at peace.

Learning to Let Go of Expectations-This is really the same as the previous two tools but it’s useful to watch your expectations with an upcoming situation, with a new project or class, and see that it’s not real and that it’s causing you stress and disappointment. We cause our own pain, and we can relieve it by letting go of the expectations that are causing it. Toss our expectations into the ocean.

Learning to Become OK with Discomfort-The fear of discomfort is huge — it causes people to be stuck in their old bad habits, to not begin new projects or skills, to be stuck doing something they don’t really like, because we tend to stick to the known and comfortable rather than try something unknown and uncomfortable. It’s why many people don’t eat vegetables or exercise, why they eat junk, why they don’t start something new. But we can be OK with discomfort, with practice. ACCers need to start with tiny things, small things, with things that are a little uncomfortable, and keep expanding our comfort zone.

Watch Our Resistance-When we try to do something uncomfortable, or try to give up something we like or are used to, we find resistance. But we can just watch the resistance, and be curious about it. Watch your resistance to things that annoy you — a loud sound that interrupts your concentration, for example. It’s not the sound that’s the problem, it’s your resistance to the sound. The same is true of resistance to food we don’t like, to being too cold or hot, to being hungry. The problem isn't the sensation of the food, cold, heat or hunger — it’s our resistance to them. Watch the resistance, and feel it melt. This is a HUGE one for ACCers.

Learn To Be Curious- We are too stuck in our ways, and think we know how things should be.  Instead, learn to be curious. Find out. Experiment. Let go of what you think you know. When you start something new, if we feel the fear of failure, instead of thinking, “Oh no, I’m going to fail” or “Oh no, I don’t know how this will turn out”, try thinking, “Let’s see. Let’s find out.” And then there isn't the fear of failure, but the joy of being curious and finding out. We should learn to be OK with not knowing.

Learn To Be Grateful-We complain about everything. But life is a miracle. Find something to be grateful about in everything you do. Be grateful when you’re doing a new habit, and you’ll stick to it longer. Be grateful when you’re with someone, and you’ll be happier with them. Life is amazing, if you learn to appreciate it.

a very difficult one for ACCers: Learn to Let Go of Control-Often we think we control things, but that’s only an illusion. Our obsession with organization and goals and productivity, for example, are rooted in the illusion that we can control life. But life is uncontrollable, and just when we think we have things under control, something unexpected comes up to disrupt everything. And then we’re frustrated because things didn't go the way we wanted. Instead, practice letting go of control, and learn to let life happen.

Learn To Be Compassionate-This sounds corny, but compassion for others can change the way you feel about the world, on a day-to-day basis. And compassion for yourself is life-changing. These two things need remembering, though, so mindful living is about remembering to be compassionate after you forget.

As you can see, these are things "to be" not things to do...when practiced they can evoke ToM and develop it.  Above all, I (personally) think meditation is important...again it need not be anything religiously based, I have practiced the same form of meditation for many years now, and it is not directly related to any religion or way of thinking, in fact can be adapted to any religion or way of thinking...I practice of form of traditional meditation, albeit in a secular fashion, I also have taught it to many people.  It is suitable for adolescents over the age of 13 or so, and there are modified versions of it for very young children.  The only "requirement" is that the individual not be severely intellectually disabled, as the skill is learned like any skill, and minimally one should be able to follow simple instructions.

The twelve tools mentioned above are sort of a "support" for my practice of meditation...but it was the practice of meditation that is solely responsible for my developing ToM.  Having said that, there are times, when my mindfulness (another name for ToM) wanes and I become so identified in my thoughts and emotions I can't separate myself from them, but those days are rare now, whereas they used to be my constant experience.

I hope you have found this information helpful.  If you would like me to elaborate on anything or explain it further, please either leave a comment or reach me on Facebook, and I'll do my best to accommodate you.

Thanks for stopping by!
~Joseph

Saying One Thing, But Meaning Another...

I have, for all of my life said one thing, while meaning another.  This doesn't really happen (so much) in writing as the process slows down both my thinking and my action making them more congruent.  Yet in any "time-bound" situation where I feel the pressure of needing to answer, especially if it is (perceived as) an emotionally charged question, I am likely to say the opposite of what I mean.

Those that know me, know I don't like to talk to people I don't know on the telephone. And, this is the reason why.  For example if I have to deal with a utility company, say phone, cable, electricity, I'm often frustrated, not believing that the other party hears me or even wants to know what I have to say.  I then open my mouth and strings of words and meanings come out, powered by my overpowered emotions and active imagination.  Usually this results in the situation becoming far worse than it needs to be.

It doesn't have to be a particularly emotionally packed situation though, it can be simply talking to someone who I don't know well, or at all.

I'm not sure, but I think this is related to our issues with Theory of Mind.  Although I've gone through a lot of training in self awareness, I still often am not able to describe my internal state accurately, especially when I am being asked to do so in the spur of the moment.  This isn't new news to me, even before I understood what Theory of Mind meant, I clearly understood that I was not able to describe my internal emotions well.

I often confuse for example; frustration, anger, sadness, joy, excitement...and can only describe them as "feeling."  When you read my finely articulated (so I am told) blog entries, this is through a long process of deep introspection.  I'm not able to just think and feel about something, sit down and write about it, it can sometimes take days, or even weeks for me to correctly identify the feelings I am experiencing.

I know that growing up, my parents, and educators and others around me would often react to what I said or did like it came out of left field.  Often though I am reacting/responding to something that happened long before  the present moment, so you would have no way to connect the two.  I understand how confusing that must be for others.

When Troya was still alive, we would have a discussion at 10 in the morning, and I would see her, say, at 3 in the afternoon and respond then how I should have responded in the morning.  By this time she would be completely disconnected from whatever we were sharing or talking about.  My dear soul sister though, she was a gem, because she innately understood what I was doing (apparently I did this a lot.)  She began to point it out to me on a regular basis (because it happened often), and only then did I understand that I had tremendous time lags in my processing of social and emotional data.

But this saying one thing and meaning another takes other forms...I may do something regret, and I may feel apologetic, yet I may answer you in a way that seems insulting or insensitive.  It may be that I am saying/repeating what I think you want to hear, not what I want to say.

If this all sounds confusing to you, then try to comprehend how confounding it is for those of us for whom this is our "normal" functioning.  Add to that that we cannot change it (easily, or at all), and you may begin to comprehend the stress, anxiety and frustration we feel whenever we communicate with people.

I know that I am always thinking "did I say the right thing", "did I say the wrong thing", "should I have said something differently" and in fear of how I will be responded to.

Sometimes, I have a clear intention of what it is I want to say (accurately) and STILL other words come out of my mouth, before I even have a chance to do anything about it.

I'm not so sure how coherent this post is to all of you, but I read something that triggered it, and felt like I needed to get it out.  If you require further clarification, by all means please leave a comment here or on Facebook, perhaps helping me to develop my thoughts more clearly.

Thanks for listening!

~Joseph

Am I Invisible?

Someone recently wrote me, asking from where comes my muse...
My muse is my pain, my sadness, my isolation...
The hope that an other need not experience life in the way I do...
The sadness in recognizing there will always be others that experience it as I do...

I am a 52 year old man, who, by all external appearances is intelligent, creative, a deep thinker, and at times I feel this is my curse. I have often prayed to be one of the ACCers that is intellectually disabled, but such is not my lot...Why you may ask, would I ever want to be ID'd and not possessed of my level of intelligence?  You think this odd? I ask you to step into my world for a moment.

I'm possessed of an encyclopedic knowledge...bits, factoids, words, paragraphs, concepts, whole sciences, but in an incomplete way.  When you speak to me, for all intents and purposes I come off as one who has a highly developed verbal acuity, and yet can often find myself without words to express the simplest of emotions...Given a keyboard, I can wax eloquent, but asked to speak of these depths on the fly and there is nothing but an empty cavern of vague emotion with no labels to speak of.

I have said in another post that you can't judge a book by it's cover.  There are really many ways to look at this.  I appear self-confident, self-assured, possessed of an inherent dignity...Yet there are many things, you take for granted that "anyone can do" that I find most difficult.

In daily life, I struggle to perform the simplest of tasks with regularity.  Even when I learn the task, I can just as easily forget it.  From the most basic task of brushing my teeth and washing my body, cleaning my clothes, my environment...knowing what and how much to eat, eating a "balanced" diet of any kind, remembering to take medications, remembering to balance a checkbook.  Remembering birthdays and anniversary dates of all kinds.

In many ways, I still feel like the 10 year old boy that I remember.  I'm expected to motivate myself, to know when and when not to do things, yet, left to myself unprompted mentally or physically, I can and will wonder aimlessly.

Most of us born with ACC that are of average or above average intelligence, view our life like a movie.  We are well aware of our deficits even if we are unable to verbalize them in a clear fashion.  So why would I envy those of us born intellectually disabled?  Because they don't go through life registering the difficulty, the disability...Everyday when I wake up, I am fully aware that I will never be like my peers.  I will always need help, will always remain dependent in some fashion to another adult to have my needs met.  I will always feel, in some way, that "I am not enough", that I am a burden to others, that I am less than. 

Most adults with ACC are intelligent enough, despite the disability, to see clearly how it affects our lives.  I struggle daily with this.  I've often thought (and said) that if any neurotypical were to spend just 24 hours in my brain, they would be balled up in the corner of the room, terrified of their lives.  I would wish, above all, that an NT could understand what it is like to be me.

Then there are those, who are so uncomfortable with my difference, with how I show up, that I am invisible to them.  They say things like "you don't look disabled." (Does disability have a "look"?) They will often shovel large amounts of "positive" thinking BS, and claim that "I am just not trying hard enough."  When any honest ACC parent will tell you that there child is likely trying harder than all her/his peers.  People will only see what they want to see, and when it becomes too uncomfortable for them to bear, they will find an excuse to reject us, putting it squarely on our shoulders.

Then there are those, who are loving, unique, genuine, and caring.  And we are so used to not trusting others that we have difficulty believing in other's goodwill.

As I grow older (I'm 52 now) I think about when the day comes that I am elderly.  I have no parents, no family (they exist, but they shunned me many decades ago.)  If it weren't for the internet, I would have no "friends", people seem to come and go so easily in my life...I fear continued isolation, I fear fading away into the background, dying unloved and alone.  When people see that I am possessed of different needs and "requirements" than an "average" person they can't handle it, and conveniently find excuses to move out of my life as quickly as they came in...at least it has always been this way for me.

I'm sorry that this is not one of my more uplifting posts...I'm just not feeling it today....feeling scared, alone, isolated and unloved, feeling only tears.

A day in the life of my brain.

~Joseph

ACC...You Can't Judge a Book by It's Cover...and the Book has Difficulty Explaining Itself...

I think one of the most difficult aspects of living with ACC, both as a child and now as an adult is that we present so well.  Actually, we don't really to those who know what they are looking at/looking for, but to the average person they cannot see what goes on in the inside of us.  Not all disabilities are visible ones.  In some ways, I wish I had been born with a visible disability, then maybe I would be understood, or at least people would take me at face value...but this is not the case for most of us with ACC.

One of the striking things about (my) ACC is that I have always considered myself "the encyclopedia of useless information."  What I mean is that I collect lots of facts and figures, but I do not always understand what they mean...and when I do, I don't understand them in a higher cognitive concept, I may not understand how they relate to the greater world at large.

Dr. Brown and Dr Paul at the Cognitive and Psychosocial Abilities in Agenesis of the Corpus Callosum study I just undertook in Pasadena Ca, might disagree, but it seems to me, anyhow, that those of us with ACC can often test more highly in a controlled situation, but that the same knowledge in "real life experience" can often fall short.

Kim Peek

Dr Paul brought up some things that I initially was not all the comfortable with...We were discussing Kim Peek the ACC Savant.  I was talking to her about his absolutely profound ability to pick up a book, read two separate pages with his two separate eyes and memorize it's contents seemingly instantaneously.  She commented to me, that although Kim could do this, he would often not understand the contents he read, or it's relevance in the "bigger picture."

I have to admit, (firstly) I am not a savant, so I am not comparing myself to Kim's profound ability, however my brain can contain in inordinate amount of information but may not know how to use it in it's proper context.

This relates to my current topic in this way:  I learned how to pass very young.  Learned how to appear "normal" when I was in society (or so I thought I had.)  From a very young age I had a very high verbal vocabularly...I seemed to say the right words.  Yet by my own admission, also from a very young age, I learned how to manipulate words so that I seemed more on top of things than I really was.

The book of my brain that I was trying to explain to others, I could not do.  Although I have acquired some capability in Theory of Mind today, albeit not perfectly, I did not have this at all as a young child, or an adolescent.  Rather, for the most part, when at any time a parent, a doctor, a teacher or a therapist wanted to know "what I was feeling" (what was going on inside me) rather than (be able to) explain this, I most often confabulated great stories out of my imagination, parsing together the bits and the pieces of my knowledge and memory along with my profound imagination in order to come up with information that was "passable" (I thought "understandable") by those asking the question.

The unfortunate thing about this, is I went through the majority of my life, my childhood, adolescence and a great deal of my adulthood, never once being able to share what was really going on inside my world.  My ACC not being discovered until 2008, this led to many and fabulous wrong diagnoses by mental health "professionals", led to my being medicated with all kinds of inappropriate medications that made existing problems worse and created new problems of their own.

When ACC is not identified, it is my opinion that a lot of damage can be done by well meaning parents, educators and doctors.  It is also fair to mention that these same can only go by what is before them, by what they think they observe.  Having said that, I believe it is of the utmost importance for those working with ACC children and adults to learn the facts about this brain disorder...in essence do not judge the book by it's cover.

Probably the most common comment I hear from parents is that their child's educator is not responding to their child with ACC, but responding in a way that shows that they do not understand the disorder.  I have to believe that educators want to respond appropriately, but I have also seen so many that dig there heals in, and do not want or feel it necessary to understand this difference...this I will never understand.  I've also observed it in adults: "this didn't 'exist' when I was a kid, so it doesn't exist now 'they' should just 'cope' like I did/everyone else had to."  This kind of thinking makes me absolutely nauseous.

On the parent's or concerned adult's  side of things, I think it important to help the child or adult with ACC to develop self reference, Theory of Mind, mindfulness, a "framework with which to be able to relate their inner world in appropriate ways.

Whereas on the one hand, a non-verbal autistic can have a highly developed internal world but not be able to relate to the "outside world" with ACC we can and often do have highly developed speech, but this "speech" is not truthfully connected in a meaningful way with our internal experience/reference.  In my case, my speech and reference were tied directly to my imagination, rather than my reality.  I can understand how this can mislead parents, educators and doctors.

I will say that even today with a more developed sense of self and internal reference, there are many times when someone asks me to describe my internal experience that I cannot that I become at a loss for words, or that I will instead relate some "information" that I have currently going on in my mind but that may not really be linked to it in any way that an outsider can understand.

For me personally, this creates a great sense of frustration.  Like many of my peers with ACC I have average or above average intelligence, so people's expectation of me doesn't match the reality of who I am.  I still have cognitive, emotional and social differences that aren't apparent to someone until they spend any period of time with me.  After they do, they think I have "changed" but the truth of it is they have gotten to see me as I really am and they are confused by the incongruity of how I show up.

At the age of 52, I still experience a great deal of loneliness.  Unlike classical ASD, those with ACC often enjoy and desire to be social yet we do so falteringly.  I've always said that I can quickly gain rapport with just about anybody, but once I have it, I haven't a clue what to do with it, haven't a clue how to maintain that relationship in appropriate ways.

In short, I've come to expect all my friendships and relationships to eventually fail, or at the least stalemate.  The exceptions to this have been those who learned about my neurological differences, and choose to accept them as they are.  They acknowledge that I may show up in some rather unusual ways at different times, come to expect it, and do not reject me when that occurs.  It's my opinion that all relationships should be like this, yet society expects us to fill certain roles, to fit in certain notches, to not stand out.  Thing is, I will never not stand out.  I know this.

I am grateful today that not only are those that tolerate my differences, but they even celebrate them.  They themselves have come to realize that our world is far more variegated than the black and white reality many claim to only exist.

I would say to parents and educators, that your ACCer is not like her/his non-ACC peers.  What appears on the outside does not necessarily match the inside, the reality, the felt experience of your ACCer.  We must find ways to inside of the internal psychological/cognitive and emotional world of people with my condition.  Judging or comparing them to, or expecting them to show up as Neuro-typical people is just absurd, will lead to there frustration, failure and an incomplete outcome of all they can be.  When you ask your ACCer "what is going on?"  be aware that they themselves may not have a clear description of it, they may have an incomplete awareness of their internal experience, may have no frame of reference with which to relate to you what is going on in their world.  They may use words, explanations, even fantasies to try and do this.  They are not evading you, or being deceptive, rather you are asking them to do something that is simply not in their wiring.

Teaching Mindfulness, self-awareness, internal frames of reference...these things are not easy to teach, yet they are not impossible.  I myself was in my mid thirties before I had an accurate gauge of my internal world, and a way to describe it to another.  Even today though, I might default to some learned response of telling your, rather than "what is really going on" what is in my imagination, or comparing my experience to something I've read in books, but may not completely comprehend.  Luckily there are those around me aware of this, they can coax what self-awareness and mindfulness I possess out of me, helping me to use more cogent language and description of my internal world.

My thanks to all my friends who are helping me along this path~

~Joseph

Tantrums, Meltowns and Shutdowns, the ins and outs ups and downs and all arounds...

Today I had an ACC mom pull me aside on Facebook.  She asked me to "think back when I was in elementary school" and proceeded to share with me how her child is responding during the school day to a new learning situation.  To my utter amazement I found that not only could I relate to her child's experience, it was as if she were describing my own.  The more important thing for me, is that I had not ever shared these specific details as of yet.

Her asking me to go back and remember "what it was like for me" finds me awash in memories...putting pieces together that I've not been able to verbalize for a long time.  I have already, in several posts spoken about the differences between tantrums and meltdowns, but I hadn't touched on another part of this, that of the "shutdown" and my personal experience of the dynamics between these things.

Before I do get into this, I want to share what I told her today.  That is this, that I do not believe that children with ASD or ACC ever "grow out of" there perspective ASD or ACC.  As we age we do teach ourselves more "socially acceptable" ways of passing as an NT.  While I think on some level this is certainly necessary, we (personally) must never try to convince ourselves that we are something we are not...the amazing thing, is that her child's experience today in elementary school is still not unlike my day to day experience, when you pull away the vale of "socially acceptable behavior" and "maturity" that I have learned how to parrot.

You will also find much of this material in my previous post:
Meltdown Madness; Sensory Processing Disorder & Cognitive Overload

First I will address each separately, then I will speak about how they are related and connected and issues that go along with this.

Tantrums:
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:
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.

Shutdowns:
A shutdown may well be understood as a different model of meltdown.  This is a missing piece in my previous post, albeit I think an extremely important piece, one which if left out can cause a lot of damage to understanding these behaviors and working with them.

One may think of a meltdown as a fight response, and think of a shutdown as a flight response.  Whereas in a meltdown the child or adult will do everything they can to push away the stimulus that is affecting them, one in shutdown no longer pushes away but retreats from the stimulus.  It is important for educators and parents and involved individuals to understand that the shutdown, like the meltdown is not goal driven.  Rather it is "the end of the rope" "last stitch effort" response to a perceived threat, to over stimulation.

A shutdown can appear as extreme fatigue, tiredness, disinterest, withdrawal...in my personal experience everything sloooowwws down, my senses, one at a time become dull, become numb...my face goes blank...any incoming information is no longer interpreted at all it just becomes "background noise."  I may roll up into a ball, I may roll over in place and go to sleep, in class I may simply put my head on the desk (did this many times and was "punished" for it many times SMDH)

For the person experiencing a shutdown, it is not unlike a limbo state or a catatonic state.

In my personal experience the shutdowns are far more problematic behaviors than are meltdowns...WHY you may ask?  I'll tell you:

As explained earlier the meltdown/shutdown response are natural responses of fight and flight produced by our nervous system.  A child or adult will learn to shutdown, rather than meltdown if he or she thinks/knows that they will be punished for the behavior (not mentioning a child should never be punished for a meltdown or a shutdown.)  The problem with this, is that the meltdown allows a discharge and dissipation of the over stimulus, the pain, the confusion the child or adult is experiencing, but no such discharge occurs with the shut down.

Imagine, if you will the shut down is the dreaded "three finger solute" of ALT+CTRL+DEL on your computer until it is forced to shut down with all its programs still running.  We know this is damaging to the computer, in the same way it is damaging to the individual experiencing a shut down.  A meltdown that is not allowed to occur can result in PTSD...repeated shutdowns are that damaging to the psyche...just ask me...

I was screamed at, yelled at, beaten, punished, shunned because of my meltdowns, I learned rather young how to shut down, and (personally speaking) I became quite adept at them.  They became my default coping mechanism.  I cannot say for sure that "all of my PTSD" is related to my shutdowns, but I am absolutely certain they contributed greatly to it.

This is not to say that I never had tantrums.  I will be the first to admit that both in childhood and adulthood I have them, but a tantrum (goal driven) looks nothing like a meltdown or shutdown (no goal, no desired outcome.)  Having said this, it is important to understand that a tantrum can further devolve into a meltdown.  The trained eye can see the difference between the two and it is important to recognize.  If someone in meltdown is continually pushed they will go into shutdown mode.  To my knowledge and experience once in meltdown or shutdown, a "tantrum" is not even a possibility.

If shutdowns are continually ignored or punished, this is where PTSD comes in.  I remember the tremendous confusion I was in as a child...having learned a task and learned it well, and having new information thrust on me, I would just become overwhelmed.  I spoke well, but didn't have the self understanding to explain to others my thoughts.  I was often afraid (and justified so) that whatever I had learned would "disappear" as soon as I was asked to hold the new information in my mind.  New concepts in school did not come easily for me, my speed was not that of my peers.  I would either put my head on my desk, and go into "no man's land" as I knew it, or I would even on occasion become selectively mute and unresponsive.  Today, with all the knowledge at hand educators have no excuse, but in my day I was constantly and severely punished for this coping behavior.

The pain became so intense, that by 6th grade,  I no longer wanted to learn because the way I was being "taught" didn't register with me...I became disinterested in school, and school became a living hell for me.  Within a few years of this I was put in "special schools" where my actual education all but disappeared, I was expected to just "show up."  Thank God, once I was out of school, my hunger for learning returned and only increased, but I missed a lot of seminal and important education because educators were ignorant of ACC, ignorant of my personal learning style, ignorant of even the common information in this post.

I hope this post has been somewhat helpful, and again please refer to my earlier post:
Meltdown Madness; Sensory Processing Disorder & Cognitive Overload

Thanks for your time!

~Joseph

"You're just not trying *hard* enough..."

I know that several parents of teenagers are anxious about "how their kids will turn out" and one of the subject I hear most often is questions about employment.  This is difficult for me to talk about, a very loaded subject.  My own parents used the phrase "you're just not trying hard enough" on me so often, not unlike a verbal baseball bat...which I proceeded to take from them and continue beating myself for many years.  Thank God when I was diagnosed with ACC and began to understand whyI had so much difficulty in this area, I have been able to begin the process of healing.

In my own personal experience, and in my chats with other adults with ACC there is observed a pattern.  Many of us are capable of learning vocational tasks, other tasks, scoring highly on them in a controlled situation, but when asked to perform the task unsupervised in the "real-world" we fall short of our demonstrated ability.  This was/is especially true of me.

Fresh out of high school, I decided that I wanted to attend EMT school.  The classes were for 4 hours on a Saturday morning and afternoon, 12 weeks total.  I scored very highly in this training, and I remember being very proud of it.  Yet, I only had one EMT job, lasting all but a few weeks.  This pattern has continued throughout my life.  During my interview with Dr Lynn Paul, I was asked "why did I think that was?"  As I am not the doctor I can only guess, but in my experience it seems that I lacked the organizational skills to perform the needed tasks at hand.

I remember, very early on in my experience of trying to work, that no matter what I did, what kind of work I performed, my mind was "off somewhere else" not wanting to attend to the task at hand.  If the job was 9am-5pm by 10am I was already thinking about what I needed/wanted to do once I got out of there, and all I could think about  was getting out of the task.  I have always had an obsession with "not having enough time."  I can't tell you having enough time for what, just that "I don't have enough time."

Even though I trained as an EMT, immediately on the job I found I could not manage the many tasks needed to be done without constant prompting.   Unfortunately, such prompting is not available in most adult work tasks.  I went from job to job to job for a couple of decades...beating myself up with the thought "I'm just not trying hard enough."  Being told I was "lazy" and "didn't care enough" and "not applying myself" (still don't even know what that last one means.   Thing is, even today, if I am not prompted, I just kind of wander around in my mind and thoughts.

I also have great difficulty switching tasks.  What I mean is this.  I was told "you need to get this done" so I would apply myself to it and work to finish it.  Then a contingency or change would happen, I would be expected to put aside the task I was doing and begin the new task, going back to the old one later.  This is really difficult for me.  Kinda like a freight train jumping tracks is how I experience this, but without the track switches, I'm just supposed to sort of "jump over here now and do this."  So, while on the one hand I need great concentration to stay on track, I am very resistant to switching tracks.  This is not a "willful" resistance, not "no damn it, I'm not going to do it!", I would rather describe it as a confusion, a frustration.

Before I was put on SSDI, I had several dozen job attempts...sort of does away with "not trying hard enough", don't you think?  Even after I was put on SSDI and didn't understand my ACC I spent years just trying to find "the right job", that magic bullet that would allow me to be "just like everybody else."  I caused myself so much unnecessary pain and suffering doing this.  And then I had to deal with Vocational Rehabilitation.  This was an awful experience.  They never were concerned with finding me a job with the right fit, what I could and couldn't do, what I could stick with, they were concerned with their numbers and results.  By the age of 40, some 15 years (I'm guessing) after I got on SSDI I used up all my "trial work hours."  It would be impossible for me to try and go "back" to work now, as I would loose major benefits.

I want to stress, I want you to all know how incredibly painful this experience, this subject is for me.  Even now at 52, diagnosed with ACC, supposedly "knowing better" I still have my father's voice in my head beckoning "why can't you just be 'normal' like everybody else?"  "Normal" is something, I'm afraid (rhetorically) I will never be.  Yet neurotically, I will often still pretend and behave like such a thing exists.

After decades of failed job attempts, I think the longest I ever kept a (part time) job was 6 months, my self-esteem has suffered incredible blows.  I know better but I still judge myself about what I can't do.

After being diagnosed with ACC, I have worked hard, but in a different way.  I'm learning to be ok with who I am, with what I cannot do.  And (I know, don't start a sentence with "and" surprise of surprises the more I accept my limitations, the more the gifts  I do possess come to the forefront.  The most obvious example is this blog.  It is the single-most coherent and consistent effort of mine to do anything, that I have ever accomplished in my life.

I know that I am just one person with ACC.  And, if you've seen one person with ACC, you've seen one person with ACC, but it is my hope that the sharing of my experience can open up my world to others, to parents with ACC children and adolescents, and other adults with the disorder.  I "think" I'm doing a good job at this.

I'd like to say that I'm convinced had this disorder been recognized (and understood) as it is today when I was younger that proper intervention may have provided me a different outcome.  I know many ACC adults that struggle with work, but many of them do much better than I ever did.  This is why I am stressing "I am just one person with ACC."  I just hope that those that are like me don't have to go through the self flagellation and deprecation that I unnecessarily put myself through for far too many years.

In many ways I remain emotionally immature.  I feel exactly as I did as young teenager running around the halls of junior high school (like I was ten years old.)  I don't quite have the same grip on "real world responsibilities" that others do, that even some ACCers accomplish.  I remain bitter, when I hear and see of other ACCers who are accomplished in the work world.  I know I shouldn't be, that I should be happy for them, grateful that they succeeded where I only fail, yet I am still reminded every day when I wake up that I don't have "purpose" in the world as other people do...and it makes me incredibly sad.

Again, having this blog has helped me...and apparently helps others, so it makes me happy.  Yet I even judge myself saying/thinking "the blog could be better, it's childish, repetitive" etc...I'm so used to the Protestant Work Ethic that was jammed down my throat growing up that I still judge myself by that ruler.  My parents thought and taught that the solution for every problem was simply "work harder."  I admit, that both of my parents worked very hard, were driven in fact, to provide for us, we never lacked material necessities.

I honestly can not understand them, my mother successfully kept the same job for (I'm guessing) twenty years, as had my father, lived in the same house, same phone number, same everything for as long as I can remember.  This is not my experience of the world.  I've had very little stability in my life, the only real stability occurring in the past 10-15 years.  To use the AA expression, all of my life I continued "pulling a geographic."  I convinced myself that if I moved to yet another city, another state, other people that my problems would not follow me.  Well, we both know how that turned out...

I'm sure there are other aspects of working and keeping a job (trying to) that I could write about.  Other ACCers seem to be more successful at it than I, perhaps ask them.  If there are other aspects that I haven't covered that you think I can, either leave me a comment here or on one of the ACC support groups, and I'll answer if I can.

Thank you for spending time looking into my mind...

Joseph

AUTcast & ACCused

AUTcast and ACCused

Separate and distinct,

Generalized and penalized

The labels are succinct.

I wonder with the thunder of never ending thought:

Do you see me?  Can you be me?

Painful and distraught?

I am so much more, than what you hear or see

I beckon and implore from your judgement set me free.

Care to know, care to go

Where few have gone before?

I will show you what I can do-

On highest wing I soar

I am alone myself of kind

As you alone are too

Find the one who known by just you

To thine own self be true

Can you be me, can you see me?

I say that you cannot,

Each and every one is special

To know this, each one ought

Many flowers in the garden

A beauteous array

Hearts hardened loveliness decreases

If you take just one away

Working labels are just fables

Fictions causing strife;

See each one as they are able

An expression of God's life

Lab Rat for the Greater Good...

There is important research going on surrounding Agenesis of the Corpus Callosum and I have  just finished a three day study with Drs Warren Brown and Lynn Paul Kerling.  I want to reach out and thank them especially, as well as Ryan Mangum (the research assistant I got to know the most) and the other fine ladies and gentlemen that administered the testing and made my time there most enlightening, most fulfilling.

I apologize for not remembering all of your names, but I have difficulty with names, but you are all equally important.

First, I would like to start off on a purely personal note, then I'll talk more about the research...:

I'm 52 years old, and I spent the greater portion of my life not knowing I had Agenesis of the Corpus Callosum.  Yet I always knew I was different, the way I thought, felt, and communicated unlike those around me.

Not knowing this was because of my ACC I lead a life of dysfunction, self-blame and hatred.  My parents accusing me of "faking it" and "lying", telling me there is "nothing wrong with me" "I fabricated it all in my head." (Fabricated a hole in my head, that is a good one SMDH.)

When I was diagnosed it was like a light turned on inside of me.  All the misplaced hate, rage, misunderstanding, anxiety, blame...it all began crumbling down, melting like an iceberg in the sun of knowledge.

Today, I still deal with people that tell me "it's all in my head" sadly these people are "doctors."  Doctors who tell parents either "(s)he didn't need that 'little bit of tissue' in the brain" "it's of no consequence" or "your child will grow up to be profoundly intellectually disabled, will never walk, never talk."  These doctors are ignorant uneducated fools, harming patients by there uneducated and misguided pronouncements.

Dr Warren Brown

Hence where this research comes in...

The research piloted by Dr Warren Brown director of the Travis Research Institute is designed around demonstrating the core cognitive and psychosocial deficits common to all individuals born without the corpus callosum.

Dr Brown is assisted by Dr Lynn K. Paul. 

Dr Lynn K. Paul

Dr. Paul is heading the Caltech Corpus Callosum Research Program and an inter-institutional research consortium on AgCC. The purpose of the Caltech AgCC Project is to "characterize the neuroanatomy, effective connectivity, cortical organization, emotional responsiveness and social cognition in adults with Primary ACC."

From the moment I met these two fine doctors I was impressed with their passion and commitment to uncover the secrets of agenesis of the corpus callosum.

On a purely personal level, this experience has at once been both cathartic and healing, both bringing up and simultaneously healing old wounds.  Finally having exacting recognition that what was "going on in my head wasn't 'all in my head' " has helped me bring closure to the denial and gaslighting, the shame and disgust heaped on me by my own flesh and blood.  One literally cannot "invent" a hole in his head, missing the largest single brain structure, responsible for so much in the neurotypical brain.

This, however, is not the primary reason I participated in the study; rather I wanted to participate because I knew how meaningful, how important this research is, and that perhaps a generation down the line it will permanently alter the lives of those born with this disorder for the better.  ACC, as with autism, in my observation of parents with children and adult with ACC is that early intervention is key to a positive outcome.  This research is tuned to not just present that there is a "problem" with not having a corpus callosum, but what exactly the deficits are.  Only knowing where the exact cognitive and socio-emotional-social issues are can we hope to improve the outcomes for people like myself.

I want to be careful and not talk too much about study specifics, as I agreed with Mr. Mangum I would not.  To do so would be to invalidate and leave the study open to irregularities for the participants in the future.

I arrived at the facilities on a Friday, we did some initial testing, then I had lunch with Dr. Paul. I was taken to the California Institute of Technology to have my "hydrogen atoms flipped."  By this, of course, I am talking about spending time in an MRI (Magnetic Resonance Imaging) machine.  I have tattoos on my body, and apparently this particular MRIs radio frequency was so strong that they were concerned of "cooking" my tattoos. (As they are unsure of the inks, some of which absorb the radio waves and can heat up.)  So, I spent the better part of an afternoon with ice packs in contact with my ink inside of an MRI scanner....WHAT an experience! LOL

They were able to get all of the various scans they needed of my brain and ACC.  Who could have imagined that being scanned was so exhausting! (but no cooked tattoos, thank God!)

The remainder of the weekend was spent taking various and sundry cognitive, memory, social and emotional based tests...so many I lost count.

For most of the testing, it would be improper for the researchers to go into any details as to the meaning and results of the examinations, and I went in to this understanding that. That being said, there were times that it was acutely obvious to me that I had problems performing certain tasks.  In one sense, to be honest this was excruciating.  It was confrontational to the "Nth" degree.  I do not mean the research assistants were confrontational, but that my "deficits were right in my face."  This was pretty painful for me.  I have spent my life in denial of my shortcomings, because I was constantly bombarded by those telling me they were fabricated, so for my own sanity I had to deny them.  But here I was, voluntarily an open book for the researchers with everything hanging out.  This has been both the single most painful yet liberating experience of my life. 

I feel that I finally have closure.  I no longer wonder that "maybe I'm just not trying hard enough" or that I am immoral or evil as my "parents" would have me believe.  I can now put that to rest forever.  They refuse science, they refuse any attempt at reconciliation, and it is truly their loss.  I feel terribly (for them) but will no longer let it rule my life, leading me around on a leash of misplaced shame and guilt.

Knowing that I can never have the reconciliation with my family that I desire, I have great peace, knowing that this research will change the lives of ACCers in the future.  Knowing that in my small part, I am making a difference.

On that note, I want to stress that you can make a difference too.  The NODCC, the National Organization of Disorders of the Corpus Callosum, founded by Dr Paul and Barbara Fonseca is an organization created to support these types of research, and to support and educate families affected by ACC is in need of your help.  The truth is, ACC is such a rare disorder affecting between 1 in 10,000 to 1 in 4,000 individuals.  We've not had the same exposure as has other rare disorders (yet), but I'm confident our time will come.

Dr Brown and the research team was kind enough to take me to dinner, to thank me for my participation in the study.  But really, I want to thank them.  Having participated, I now understand in more detail how important this work is for the future.  Participating in it has been a high point in my life.  I was treated with great deference, with respect, kindness and importance for my contributions to this study, and I am truly grateful to all who were there as part of it.

Truth be told, the weekend was perhaps one of the most mentally and emotionally exhausting and challenging things I have ever done...but I would do it again in a heartbeat, without any hesitation.

The research team and I discussed subjects I could write about on my blog, things that many parents have asked about but I have not yet covered.  I have a lot more material to write about, so please be sure to visit my blog soon in the future, and let others know about it.

Thank you everyone for your unwavering support,

Joseph

Disability and Poverty...the American Way...

According to recent statistics 1 in 4, or 28% of those aged 18-64 years of age living with a disability live below the poverty rate.  I am one of those myself.  The poverty rate in the United States is considered any individual earning under $11,139 per year, which basically describes all of the disabled in the united states living on SSD and SSDI.  Those of us considered disabled are not allowed to earn over $700 a month in order to receive SSDI, cannot ever save over $2000 in savings, in short,  everyone with a disability in the United States who receives SSI is legally obliged to be poor.

Even as today, there is a new law passed that allows parents of disabled children under 18 to put roughly over $100 thousand into a savings plan, this money can only ever be used for medical expenses and disability related expenses.  

This income disparity between the abled and other-abled/dis-abled can hardly be what the founding fathers of this country had in mind.  A lower socio-economic status is linked directly to lower education, poverty and poor health, ultimately affect our society as a whole. Inequities in wealth distribution, resource distribution and quality of life are increasing in the United States exponentially.

Specifically, I am thinking about all the many children who becoming adolescent age out of the "system", those with developmental disabilities such as ACC and ASD.  Many of us end up homeless, hospitalized, on the fringes of society, even in prisons that are largely being used as "storehouses" for the intellectually and developmentally disabled populations of this "great" county of ours.

I question, where is the opportunity so often spoken of as available in our country to lift one's self up and succeed?  I would argue it largely does not exist for us.

I myself grew up in an upper middle class family.  Both parents worked (hard), and I never lacked for anything (monetarily or physically) in my years of maturation.  Yet, in a family that was sorely prepared or willing to deal with my disability for the first, say, 20 year of my adolescence  I did the equivalent of couch hopping in order to survive, depending on the kindness of friends and strangers, till they themselves no longer could cope with my (as yet) undiagnosed disabilities.

I left home young, then came back home, ultimately by 26 I was shunned by my family, told to be "family at a distance" and then completely estranged from them.  I can honestly say, that since then, till the present time at age 52 I have lived well below the poverty line.

Prior to diagnoses I tried to work.  After all, my father would constantly pound in my head his good ol' "Judeo-Christian 'work ethic' " of "just try harder, you have to work harder and that is the solution to all your problems."  By the time I was put on SSDI I had many dozens of job attempts, so was it really that I was not "trying hard enough"?  I say not.  I have never kept a full time job at all, not for more than a couple of weeks anyhow, and the longest I ever kept a part time job was 6 months, but this wasn't for lack of trying.  It is because of my disability.

Prior to diagnoses of ACC I had no way of understanding why I could not navigate complex social situations.  I also had no concept as to why the organization and management of my life (let alone "work") was nearly impossible for me.  Those with ACC can often have great difficulty with executive function.  We can, in a controlled environment test very highly in our abilities, but given the task to perform these same in a "real life" situation we find ourselves unable to perform at all.

While I can't speak for everyone with ACC, I can describe my own experience living with this lifelong disability...I can tell you that one can get to a point where one questions one's ability, sincerity, one's sanity and worth in society as a whole, when forced to fit our "round peg" into the square hole that society provides for us and demands we fill.

Since diagnoses, as I have mentioned many times before, my life has changed radically for the better. Of this there is no doubt.  Insofar as self-acceptance, and encouragement and embracing the many gifts and skills I do possess my "old life" is but a shadow of who and where I am today.

Having said that, I, as a 52 year old man, am left with very little options to function and fit into the "real world."  The so-called "jobs programs" available, have never been focused on long term successes, rather in their own numbers and figures.  Even going through "vocational rehabilitation" I have constantly run into unfunded and under educated "help" only interested in forcing my round peg into their square hole, long enough for them to increase their funding.

arrow pointing to the missing corpus callosum

It does not help that ACC is so little recognized and understood.  I've run into problem in my own state of California, trying to access services for the developmentally disabled where they will tell me "ACC is not a 'legally recognized' disability" and therefor I am not able to access needed services.  You tell me, if having a hole in your brain, is not a disability, then what is?

"The impact of AgCC may become more evident as a child reaches puberty. In a typical brain, corpus callosum functioning becomes much more efficient around ages 10-12, as the callosum mylenates. As the corpus callosum becomes increasingly functional in their typically developing peers, children with AgCC often appear to fall behind. Particular areas of difficulty are social understanding, social communication, comprehension of non-literal language (for example vocal inflection and proverbs), problem solving, executive skills (for example organization, flexibility in response to change, and planning), emotion recognition in others, self-awareness and personal insight. People with AgCC may appear somewhat rigid in their interests and socially simple. In this sense, AgCC symptoms may "get worse" with age ... however, often these individuals learn coping skills well into adulthood, so they may also "get somewhat better" with age eventually." (from the works of Dr. Lynn Paul Kerling)

HOW is this not a disability?  I still constantly run into ignorant doctors, therapists, and workers that want to shuffle me off because they do not understand.  I was actually told by a worker at the California Regional Center when applying for benefits that because I had ACC I wasn't ASD but rather schizoaffective, which I might add has been struck down dozens of times by multiple doctors as being inaccurate and untrue.  Because ACC is a neuro-anatomical structural defect, it is not included in the DSM, which strictly speaking is an insurance billing manual for the American Psychiatric Association.  WHERE does it leave us with ACC?

I myself, have reconciled with the fact that I will always be poor, and the poor are always shuffled off to the margins of society.  This does not mean that I will not continue to fight for the rights of others, that I will not continue to try and make a change for the future generations.

It is my hope that when my book comes out, I will be able to help make that difference.  One in four thousand of us are born with a disorder of the Corpus Callosum.  Again, I would argue that would make it the second most common disorder (next to ASD) affecting people today, rare, but not for those who have it.

As I'd mentioned last week, I will soon be participating in the Corpus Callosum Research Program study of Dr Paul.  While I'll have the added benefit of some personal enlightenment, this research will likely have untold benefits on future generations that I will never know about, and I'm fine with that.  Yet, I will never stop working to educate the public about ACC and its effects on an individual.

In the meanwhile, my heart breaks for all of those (us) that continue to live poor and unnoticed, unhelped, on the margins of society.  We will never be a "free land of opportunity" until that opportunity is equally available to all its citizens, as it certainly is not at the current time.