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 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...

Friday, January 30, 2015

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.

In a typical tantrum from either child or adult, one observes that they have control over their

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

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

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

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

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

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, my personal experience everything sloooowwws down, my senses, one at a time become dull, become 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!


Meltdown Madness; Sensory Processing Disorder & Cognitive Overload

A requested repost from an earlier date>>>>>>>>> I want to talk about the ACC and ASD phenomenon of meltdowns....