Wednesday, February 10, 2016

"But you don't "look" disabled..."

This is a difficult post for me to write, because this attitude is so prevalent today.  "You can't have autism...you can't have ACC...you don't "look" disabled."  I always come back and ask people "what the hell does "disabled" look like?"  The stereotypes that everyone with ASD or  ACC is "Rainman" is excruciating to bear.  (Although the real Rain man, Kim Peeks did have ACC like me.) The faces of the disabled are multitudinous and individual.  No one person with ACC or ASD is alike.

So, when I hear that ignorant comment "you don't look...." I have to remind myself that they are betraying their own ignorance.

It seems to me, that people that say this are trying to deal with their own discomfort.  They want us to be "normal" (whatever that is) otherwise, we, who look like them become a threat.  After all, if I look just like you, and I'm disabled, that means that you could be too.  The trouble is, is that this is the TRUTH...There is no "look" nor "luck" to being disabled.  An able-bodied person, could easily wake up in the morning "normal" and get hit by a truck, struck by a disease and become disabled.  Yet, those of us born with disabilities cannot wake up one day being able.  This is the hard truth that many do not want to look at, and find threatening.

People also look at me, because I drive, I can bathe myself, cook meals for myself and think "well, he can do all that, so he can't be disabled."  But the facts are, I can't drive at night or long distances, become easily confused driving, I forget to bathe and brush my teeth on a regular basis, and have great difficulty managing healthy meals of any kind...most able-bodied individuals are only comfortable looking at the surface, because they know if they scratch any deeper that they may not like what the find.

Then you have those that say that I would "wear my disability as an excuse, to be (lazy, stupid, moocher, want "attention") different.  I would sincerely challenge any of those people who think this, to live a day in my shoes.  Before I was put on disability in my mid-twenties I had tried MANY dozens of jobs...listening to the perverse voice in my head of my parents' obsessive Protestant work "ethic" that "you just need to try harder, you are just lazy."  I tortured myself with their voices for too long.  And if I was "lazy" how was it that I had close to 50 jobs on my SSA job record before I was given SSDI?   WHICH ONE of those jobs was I "lazy" at?

I don't "wear" my disability, I was BORN without a Corpus Callosum, I was BORN with autistic traits, I can't and don't "put it on and take it off" at will, although my poor sick parents would have me believe that.  Granted they didn't have any access to proper diagnoses and treatment for what I have when I was a child....but still.....  I don't "have" ACC or Autism, it is part of my identity, and on some level is who I AM.  When I was properly diagnosed, I could finally reckon with who I was, I could stop judging myself, start loving myself and start to discover the many and great talents that I DO possess.

So, if you are of "able-body" and "able-mind", please be careful not to judge, you have no idea the struggles another person goes through.

Joseph


Sunday, January 17, 2016

The Pain of Loss, Stability, Friendship and Security, and those that would abuse it...

It has been a long time since I have written, and I apologize for that, best intentions aside...

Back in October 2014, I lost my best friend, been victimized by her family and subsequently have lost years of hard work and change and development in my soul since I learned about my ACC and ASD.  Since that time, I have had a number of people taking advantage of my, my naivete, my differences and deficits.

My friend Troya, immediately recognized my differences and accepted me regardless.  When we both discovered my congenital brain defect and my autism diagnoses it was the missing piece to the puzzle of my life and all the suffering I had been put through.  If it were not for her I would not have sought the medical treatment for my liver, all the way back then that set forward a series of domino events that ended in my ACC and ASD diagnoses.  And when all of that came to the fore, she supported my journey all the more and protected me from those who would try to hurt me, was my advocate and best friend.

Since the time of her death, I have faced not only the loss of someone who we considered ourselves brother and sister (I have that in her own handwriting) but the loss of stability, close friendship, security, advocacy, and much more.

She worked hard to bolster up my self-esteem, never letting me think less of myself.  I guess I could say that some of that did "rub off" on me, as today I am a stronger person, but the pain of loss is still unbearable.

People with ACC and ASD do not face change easily.  The disruption in routine, daily life and environment is profoundly disabling for us.  For an NT this is never a big deal, they change, they adapt and they move forward.  But for people like me, it is like going backwards thousands of miles and dozens of years in development.

I depend upon sameness in everything to cue me into daily habits and such that NTs find automatic.  This includes things like bathing, oral care, proper eating and feeding, organization of my life and surroundings.  Without that sameness I have no foundation in my life or ability to replicate even the simplest of tasks.

Since my friend died, I have been in a wilderness, with no foundation, nothing familiar.  She left me a small amount of money for my needs, which lasted a small amount of time.  I am truly grateful for that.  Yet, on Social Security Disability, I have to survive on money well  below the poverty level.  Less than $800 a month, to house, feed, take care of medical, transportation...

Because of this, I had to remain open to those out there who said that they would help me, be there for me, etc...but I have found many of them to simply want to take advantage of a vulnerable person.  I was moved across the entire country, because I trusted someone that said that they would "be the family I never had", would "pay half my housing, using the other half as 'office space'" be my In Home Support Services, help me "plug into services..." Instead, this person has manipulated me, taken my money, literally made me homeless turning off the electricity to where I was staying, never offering a penny in help but instead milking my own funds and bank account.

To say I am bitter is an understatement...

And there were those who saw and were aware that this person continued to do those things to me, but they shamed ME, trying to gaslight me and convince me that I WAS in the wrong for bringing this person's crimes to the fore.

All this has lead to my being put on the radar with Adult Protective Services, and I guess I should be very glad for that.  The police are now investigating the crimes against me, and APS, along with an advocate who lives far away from me are trying their damndest to get me housed and protected.  I am grateful to be certain, but why does it take being dislocated from one's housing for it to come on the radar that crimes are being committed against me? Troya's own family, after she passed continue a campaign of harassment that was seemingly never ending, but at the time I didn't have an advocate.  I do now, so I'm far less worried about them and other's who would seek to take advantage of me.  Having moral and intelligent and legal advocacy has gone a long way to help me.

I'm currently displaced, living in a motel paid for by APS and they are working full time to get me housed.  We are working to get me into housing for seniors and disableds.  I have been accepted but we are working on getting my service dogs allowed.  The hoops I have to jump through are just debilitating in themselves.

The really sad thing is, though, is that my story is not unique.  Having talked to other adults with autism and ACC, it is a sad reality that many of us are continually taken advantage of, abused, gaslighted throughout our lives.  Without exageration, I can think of at least a dozen others I have talked to, just in the past few months that have gone through or are currently going through similar situations to my own.

The developmentally disabled adult in our society is at risk of constant abuse.  People look at me and have the arrogance to say "you don't look disabled."  What the HELL does that "look like"?  The truth is it looks like YOU.  Those of us with so-called "invisible disabilities" are constantly at risk for this kind of treatment.  People think because I can drive a car (under certain circumstances) and wipe my own ass, that I am just like them, that I should be held to their standard.   It is too painful for them to imagine anything else.

ACC, as with autism is a very spectrum type disorder.   And it helps not to think of this as an A-Z or 1-10 phenomenon.  Rather than saying we are "low-functioning" or "high-functioning", that we have for example "A-F" missing (or F through Z) most of us are more like a block of swiss cheese.  I might have A and F and P and R, S, W and X missing, while I might even excel in some of those other letters.

So THIS is why I haven't written in so long, I've not had any security or stability in my life for a very long time... I am grateful to "L" (my advocate) and to Richard from Adult Protective Services.  I am grateful for the detectives investigating the crimes done against me.  I'm just thoroughly exhausted having to go through this.

And there has also been constant threats, gaslighting and abuse coming from a few people when I write posts.  This is why I have comments blocked expect when I approve them.  All those abusive posts are put into a file and available to the authorities now.

For all my faithful followers of A Boy With a Whole in His Head, I want to express my gratefulness, and ask for your prayers and well wishes.

I'll try to write again soon.

Saturday, October 31, 2015

The Bane of the Black & White of Things...

There is a saying amongst people that practice Neurolinguistic Programming that "He with the most behavioral flexibility, wins/is happiest."  This is a source of great difficulty for many with ACC and with autism such as myself who tend to see the world in a series of rigid absolutes, black & whites, as it were...we are concrete, literal, and absolutist.  This is not due to obstinacy or choice, but the way we are wired, literally the way we process thought and action.

We have our own set of rules and regulations and expectations of the world; these are rigid, black and white, right or wrong with very little room for interpretation or tolerance for variability. We feel safer with concrete, predictable rules and laws that remain constant, holding to these rigid beliefs and expectations, and will likely melt-down if challenged or forced out of them.

This holds true for us in social situations as well, where it does not so for the neurotypical individual.  We hold so tightly to our own social rules that we cannot easily read the normal fluctuations of social discourse that take place amongst people, this leaves us "flying blind" much of the time...we will misread a situation, react incorrectly, control the situation to match our expectations...and get extremely angry when they don't.  If things are not the same every time, our world falls to pieces....there is no "average" or "is this 'good enough'?", no possible alternatives but yes or no.

I tend to have an overly simplistic cognitive style... This is due to problems synthesizing complex information.  Those of us with ASD often artificially split decisions and social situations into two extremes: right/wrong, black/white, good/bad.  One teenager with ASD said:  "You need to understand that I only see the world in terms of zero's and one's, much like a computer.  I don't understand anything else.  It's all or nothing."  This makes decisions and life much simpler.

Individuals with ASD can be overwhelmed by anxiety and their decision-making process paralyzed by understanding that most decisions are complex and involve both good and bad aspects.  Therefore, in order to regulate their emotions, the person with ASD will tend to simplify their choices by dividing them into polar opposites.  This gives them greater clarity and avoids the anxiety and emotional regulation problems associated with seeing the world as complex.

Truth be told, this describes me to a T, and I'm quite tired of apologizing for who I am.  While I do spend much of my life trying to better myself, I do know that there are psychological and personality traits, traits of mental functioning that will never change because they are literally how I am wired on a neurological level.  The difficulty I have is that those around me, even those that love me (or say they do) refuse to recognize, through either stubbornness or lack of education, that when they communicate with me, that they cannot expect me to understand complex figurative thought and language in many situations.  Or they will "drop a bomb" on me, give me an unsolvable issue and stop talking to me because THEY are frustrated? (never taking into account on how they are making ME feel.)

Now, there are areas where I can and need to change, but it is a great challenge, and as soon as I shift in one area, another snaps back, over and over again, so it's a never ending battle.  Some of those areas are:

  • Rigidly seeking predictable, static routines & activities.
  • Actively resisting change.
  • Controling all activity & interactions.
  • Seeking rigid routine and self-controlled activities to avoid chaos/confusion.
  • Having a strong resistance to following the lead of others.
  • Being compulsive, repetitive, ritualistic, & self-absorbed; oppositional; self-stimulating and defiant.

As I said, it is like Dr. Doolittle's Push-me-pull-you, I work on one area of this, and another area crops up, then I work on that area, and the first one pops up again, a never ending battle.

My daily life is exhausting, to say the least.  I now live in a situation with little to no social contact, other than my church, and I prefer it that way...is it lonely?  Without a doubt it is, but I can't handle the pain of misunderstanding and conflict constantly at my door.

I have a dear friend in my life right now, who continues to be helpful in so many ways, but they dont' understand that many times when they talk to me, they sabotage me, causing me all kinds of grief.  They set me up with untenable situations, leaving me hanging, without answers, and I end up having sleepless nights and extremely anxious days, mostly because they have not learned how to communicate with me.  I really care for them, but this is crushing me, because I don't know how to get the point across to them that they are doing this.

All in all, life is improving, and I'm back to writing on my blog, so you'll hear more from me in the near future.  Thanks for listening.

Joseph


Tuesday, September 22, 2015

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?

Ableism, Right at Home...

I want to write about a most painful subject.  For me, it is one I have dealt with most of my life, and that is Ableism.

Ableism is both the practices and dominant attitudes in society that devalue and limit the potential of persons with disabilities; and a set of practices and beliefs that assign inferior value  to people who have developmental, emotional, physical or psychiatric disabilities.

An ableist society is said to be one that treats non-disabled individuals as the standard of ‘normal living’, which results in public and private places and services, education, and social work that are built to serve 'standard' people, thereby inherently excluding those with various disabilities. 

In extreme cases, morality, worth and intelligence may even be equated to being able-bodied or able-minded, while disability is conflated with immorality, stupidity, and worthlessness, and disabled lives may be devalued. The eugenics movement of the 19th and 20th centuries, which took its most extreme form in Nazi Germany, was a product of this belief, and some believe the ‘right to die’ movement is also an outgrowth of ableist beliefs. 

What has been most painful for me lately, is that on a personal level, someone who I trusted entirely; my priest; has entirely treated me in this ableist fashion and has not been there as a support during a most trying time for me.

I did my best to educate this person about my disability.  I provided information online about ACC and autism several times.  I happen to know that he never even looked at any of it, never even considered it.  When I brought up my disability, he laughed it off and said "everyone is a little bit crazy."  ACC and ASD are not just "a little bit crazy" but biological and neurological disorders that make a difference in how I function (or not) and how I can show up in the world.  To understand these differences is to understand me better, to be able to relate to me on my level.

All of my life, I have been forced to "measure up" to an impossible standard, and when I did not, I was judged immoral, imperfect, broken, lazy, whiny, stupid and much worse.  But to be treated that way by those who are supposed to love you unconditionally is beyond repulsive.  What damage it does to the soul is unfathomable.

I will write more in depth about this, as I am quite passionate about it, for now I just wanted to broach the subject, as it is really on my heart and mind.

More to come...


Thursday, September 3, 2015

A 386 in a world of Pentiums...

While not the most accurate analogy, the 386/Pentium analogy works quite well when discussing someone with ACC as compared to a neurotypical individual.  There is no doubt that I am intelligent, that I can remember wrote facts, patterns, sometimes to an encyclopedic extent...but it is what I can do with these in the moment that makes me different than your average bear.

Perhaps, for me, one of the most frustrating aspects of my ACC is what I term "lag-time."  In the course of any given conversation or interchange, it may initially go unnoticed by the parties involved but it's result is not.  This is particularly true of social or emotional situations between peoples, things that an average person wouldn't think twice about...

I might be asked a simple question of how I am going to respond to a situation and before they even finish asking the question the "gears in my head" come to a screeching halt.  Sometimes it's not even "I don't know the answer" sometimes it's just blank and very frightening, so very difficult to describe.  Then oftentimes the gears might move a little, back-up, then move again.  This is especially true if a situation is not what I expect it to be or is outside of my expectation, I will simply have great difficult grasping it, no matter how simple the concept, regardless of my intelligence...

This is where "lag" comes in, because minutes, sometimes even hours later the answer will click and I will have an AHAA! moment.  When Troya was alive we might have a disagreement in the morning over something I simply could not understand...ten hours later, when she'd be home from work and we'd be in the living room I would just start talking about it like we'd never left off of it with an understanding of it just as she intended.  Frustrating for her and for me.

There is also the matter of being able to decode and express my own thoughts so that others may understand them, but that is a subject/post for another time...

I have come to experience that no amount of reasoning is going to correct these processing errors or this lag time.  I experienced it (I believe) far more profoundly in childhood, and was severely punished for it time and time again because I just could not understand what was going on.  Unfortunately, as an adult, I have grown into a pattern of avoidance with people simply so that this has less of a chance of occurring, (but it still does.)

I will write more about this in the future, today I just wanted to introduce the subject...

Thanks for listening,

Joseph

Wednesday, September 2, 2015

My Apologies

My apologies for not writing in my blog for some time.   Much has been going on in my life that has kept me from the task.  I will write soon, but certainly by next month I will be writing regularly again.

Joseph

Wednesday, May 6, 2015

ACC & the Drive to Succeed...

One morning as I was talking to the parent of an ACCer, it occurred to me that I haven't written specifically about the ACC "need to succeed."  Being driven to success isn't necessarily a bad thing, but with many ACCers and ASDers there is usually a very black or white, success or failure type of thinking.  We are highly driven to succeed, and to measure up to our peers.  When we don't we tend to judge ourselves very harshly.

Talking to this ACC mom this morning about her son "M" I recalled myself at his same age.  I was high school aged, and was so concerned with performing at my best, to make parents, teachers and others proud of me.  All the while though, having ACC and the socio-emotional and cognitive differences (and not knowing it) I would work harder to succeed than my peers. Especially at this age (in my teens and twenties) all I cared about was being pleasing to others, making them happy, wanting them to be proud of me.

I created for myself a most impossible benchmark to measure up to...

I do believe every adolescent wants their parents to be proud of them, but with ACC we can do this at an entirely different octave.  And I couldn't understand that why nothing I did was good enough to please my parents.  I could not understand (not knowing about the ACC) why I "was the way I was" (obviously different than my peers.)

For me, the drive to succeed is an "all or nothing" proposition.  If my success doesn't turn out exactly the way I envision it, I feel like an utter failure and fall into confusion about what to do next. Executive function is as much about planning for contingencies as it is planning, beginning and ending tasks, and I've clearly always had an issue with these vital mental processes.

As I am lacking in behavioral flexibility, planning for contingencies is a constant source of frustration for me.

I still strive to succeed, only now in life I don't constantly use others as the measure by which I judge myself.  I think this has been the most difficult thing for me to do, it is so engrained.   And I think it largely not my ACC but how I have learned to cope with it, and so beginning to look at my own unique talents and deficits I function better.

Learning about my ACC answered so many questions in 2008...almost immediately its effect was a positive one. That AHAA! moment lead to my accepting of myself just as who I am, not what others expect of me.

I still have to check myself now and again to see if I am trying measure myself to impossible standards...but at least I am aware of it now.

That is all! :-)

Wednesday, April 15, 2015

Anxiety Without Focus, as a State of Being

People with ACC and/or autism often have what is termed free floating anxiety or Generalized Anxiety Disorder.  What this is, is a type of anxiety that simply comes and goes with more days anxious than not, all without a clear cause or reason.

Add on top of this any change, whether it be seen as "positive" or "negative" and the state of anxiety can be unbearable.  ACCers do not deal well with change.  This is not "psychological" or stubbornness, it is because we live with a brain that thinks and remembers differently.  Many of us have memory encoding issues, trouble remember things as they happen in sequence.  This being so, it makes all the sense in the world that any disruption to our environment or routine is anxiety provoking.

Anxiety presents itself with a mixture of both physical and mental attributes:

Physically we can experience a pounding heart, sweating, stomach upset or dizziness, frequent urination or diarrhea, shortness of breath, tremors and twitches, muscle tension, headaches, extreme fatigue, and insomnia. Mentally we experience  feelings of apprehension or dread, trouble concentrating, feeling tense and jumpy, anticipating the worst, irritability, restlessness, on constant watch for signs of danger, we feel like our mind has  gone blank.  Any given individual with ACC can experience any mixture of these symptoms.

These symptoms will often lead to anxiety/panic attacks.  Panic attacks come with a surge of overwhelming panic, feelings of losing control or going crazy, heart palpitations or chest pain,
feeling like you’re going to pass out, trouble breathing or choking sensation, hyperventilation, hot flashes or chills, trembling or shaking, nausea or stomach cramps, and feeling detached or unreal.  If these symptoms persist several times a day it is classified as a panic disorder.  This is highly debilitating and itself leads towards depression if not treated.

While there are medications that treat anxiety symptoms many people have success with cognitive behavioral therapy and/or dialectical behavior therapy.  I myself use a combination of all of the above.

Routine and consistency are really important factors in the life of someone with ACC or autism.  The moment these become in any way disrupted the door opens for anxiety.

As I have said, if this anxiety is allowed to continue for any length of time, it leads to symptoms of depression...I know, in fact, I am going through both anxiety and depression as I write this.  It's so frustrating too, because I have recently made some positive changes in my life...but as I've mentioned before, change of any kind can be incredibly anxiety provoking for both ACC and ASD people.

A not so pleasant look into the brain, on any given day, of someone with ACC...

Friday, March 13, 2015

ACC is...


ACC (Agenesis of the Corpus Callosum) is anxiety for no reason; anxiety when things go well, and worse anxiety when things go awry.  ACC is loneliness, even when surrounded by a room of people.  ACC is trying to get your point across, and no matter what nobody really understands what you are trying to say.

ACC is forgetfulness, but not like what typical people have.  ACC is having a conversation, turning away and completely forgetting we have talked;  it is reading a chapter and not being able to describe it to someone two minutes later.

ACC is just not getting the joke, not understanding the subtlety in which someone is speaking to me.  ACC is the ability to be ironic, to use metaphor and insinuation, but not to understand them when someone else uses it.

ACC is the frustration of overwhelming emotions, without the ability to interpret them or describe them to others.  ACC is so many other things I cannot possibly describe it...

sometimes...

Thursday, March 5, 2015

The Politic of Change, Sameness & Inconsistency...

We live in a world of change; nothing stays the same...in many ways this is the bane of my existence.

On some level, all people resist change, yet those affected by autism and/or ACC resist it with all their might (in my experience.) This is also complicated by our (seeming, by others) inconsistencies.

I imagine it is frustrating for our neurotypical friends and parents and the like, more so, I dare say for us with the condition.  I have often explained the inconsistency like this:  I will tell you with conviction that "I HATE broccoli, would never eat that garbage, I've ALWAYS hated it, and I COULDN'T imagine eating it" on a Friday, you come visit me on Monday we go out to lunch and low and behold I'm eating broccoli, and I'll say "I love broccoli, I can't get enough of it, I can't imagine life without it."  Now, I know that this is a silly example, but it does transfer to how we can appear to others.

In my case, I will hold to a religious, political or philosophical position, even fight to defend it, then another time I might hold exactly the opposite position.  This has got to be confusing to those around me, but it isn't to me, nor is it a contradiction.  I will have the typical autistic obsession on a given thing for a long time and then a switch flips in my head and it becomes something else.  Then, all of the conviction, all of the energy and commitment to the previous way of thinking or seeing something is completely supplanted by the new obsession/way of doing and seeing things, and I can no longer even imagine the old way.

So, on one level there is a fluidity in my brain and personality, although generally speaking I am not in control when the "fluid changes."  I live with a great deal of relativity on a certain level, and when faced with aggression, confusion, frustration I am apt to change positions on a whim...all appearing consistent to me while to others appearing confusing and incongruent.

I am resistant to change of any kind.  Be it good or bad, difference makes me feel very uncomfortable.  Even the foreknowledge of positive changes and moves evokes tremendous anxiety in me.  So, in some ways knowing in advance of negative things is less troubling, as I can work, I can fight, to change it.  Yet when I positive change is coming, I still have tremendous anxiety about it.  It's known that ASDers overthink things, and I'm sure it is true of ACCers as well.  When I have positive plans for change my mind races, overthinks, confabulates futures that do not yet (or may never) exist.  The end result is complete emotional exhaustion.

One of the major ways I combat this is to try with all my might to stay focused in the present moment.  It isn't always effective, but it is the best thing I can do to not enter a loop with my imaginative mind that leads to anxiety, frustration and depletion of any and all of my emotional energy.

I can be so stuck on sameness and having things presented in my life in exactly the same way, that when I learn a task, and learn it in a certain way, it only takes a single variable thrown in the mix for me to unlearn that task.  To an outsider many of these things might appear as OCD but I (personally) think it is a coping mechanism to deal with our memory encoding problems.

For example, when I do dishes, I must do the glassware, the dishes, the utensils and pots and pans all separately.  When I do the utensils, I will do all the forks, then spoons, then knives, (in whatever order) but will not do a fork, then a spoon, another fork, a knife.  And then each must be stacked separately.  The knives must not be put in the dirty dishwater because I know in my absence of mind I am likely to reach into the sink and cut myself badly (I have done this.)  I have IHSS, (in home support services) that help me with household cleaning, cooking, and order.  I will insist that they do (for example) the dishes in exactly the same way as I would do them, and if they didn't, I would do them over again, or worse let those dishes sit in the drainer and not use them for a long time.

This makes my life really very complicated when it comes to my ADLs.  IF I remember to do them at all, I have to do them in a certain order, and a certain fashion, and if anything interrupts or changes that order I will "loose" that habit for a long period of time.

The most obvious example that comes to mind is brushing my teeth.  All of my life I have had difficulty in "remembering" (processing?) the task of oral care.  I usually want to do it in a certain order, and also having sensory issues that make the task even more difficult.  I really dislike the feeling of anything against my teeth, and even more hate the feeling of dental floss.  When, a year ago I moved to my current location, I had up until that point, maintained an oral regime that I kept consistent for about 6 months.  This included using a water flosser with specially prescribed medication (I have dental implants, having lost most of my back teeth by my twenties, and both the water flosser and medicine were prescribed and deemed necessary because of my inconsistency) and where I would not consent to brush my teeth if I had to use floss, I worked with a dentist who had success with special needs clients and helping them learn consistent habits, for about a year, the water flosser and sonic brush made the task tolerable.

Yet, a month after I moved here, my flosser broke.  As they are very expensive and I'm on Social Security Disability as my only income I could not replace it.  So I stopped brushing my teeth altogether, except perhaps once every couple of weeks, until many months later when I had the extra money to buy a water flosser.  I am sorry if this example grosses you out, but, certainly not all with ACC have this issue, but I can guarantee that quite a few are probably not all that different than I am.

The thing is, you can transfer this inability to cope with change in a multitude of things in my life, from the most mundane to the most impactful.

Household moving, for example, while stressful for many is practically intolerable for many with ASD or ACC.  Even in the very best of situations it provokes an anxiety to be reckoned with.

It is as if the great factor called the unknown allows my ACC brain to start spinning out of control.  In just ten minutes, I am capable of fabricating dozens (if not hundreds) of possible scenarios.  In the right context, this is quite a gift but someone with ACC generally does not have a switch with which to shut this off.  Furthermore, our confabulations for all extents and purposes to us, are real things.  While cognitively we have the sense "this is my imagination" in reality we still have a great deal of difficulty not accepting these scenarios as real.  In many cases in my brain, they are in a sense "happening" as I'm imagining them.

Hence, my insistence that the major tool to combat this is to stay in the present.  I know often my therapist would "bring me back" by examining my imagination from a cognitive standpoint.  She would often remind me of the reality of the present situation, and that more or less what I am thinking about it are only possibilities, but not reality.  Often my confabulations occur because I really don't have a solid grasp on all the facts of the present situation, so she would rehearse with me, what is actually going on in the present time.

So, I would say to an ACC parent, that if your child is not wanting to do something, they are not (necessarily) being stubborn or indignant, there may be something else at work there.  I know it can be very difficult for us to express our thoughts to others.  Even today at 52 years old, when I am in the midst of this turmoil, that I can lack the ability to describe my internal process.  What you see here in written form is a skill that I have developed over decades of practice, yet often to describe the same thing to you verbally (in the moment it is occurring) is fraught with difficulties.  As I have said many times on my blog, encouraging skills that can evoke ToM (Theory of Mind) are likely the single most important skills, or at any rate foundational skills upon which to build positive changes in the life of an ACCer.  I recommend DBT and other mindfulness-based skills as they, in their very conception, are designed to develop ToM.

I hope you have found what I have written here helpful and welcome your feedback in the comments section and/or on Facebook.  Thank you for taking the time to look inside the mind of someone born without his Corpus Callosum.

~Joseph

Saturday, February 28, 2015

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

Monday, February 23, 2015

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...

Thursday, February 19, 2015

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.