Wednesday, November 8, 2017

Again... "Oh yeah, I have a BLOG"

Good morning 2017.

I'm a little late to this party, obviously, but you've been a bit of a bitch to me 2017, and I really don't appreciate it at all.

So.... here's the nutshell version:


  • I turned 52
  • da Creature turned 13
  • da Firstborn got married
  • da Firstborn is currently carrying the recursion equation wherein she will have a firstborn...
  • (A GIRL!!!!)
  • The school district oscillates between being a good thing and a giant, kraken-calling WTF
  • Life moves on
  • Pokemon Go is a world-wide skinner box of DOOM
  • The NSA is data mining your children, but everytime I point that out online, no one sees it, so...  this is how I'm going to make sure no ones sees THIS post either...  :P  I like to write the words though, in case there is a brief moment in which someone goes...  "wait, what?"
  • Houston did a lovely version of Gondoliers, the opera we've been waiting FOUR YEARS to see
  • Conventioning was exhausting, but worth it
  • I have a LOT of pictures that I've just sort of accumulated, and some are on the facebook page for Aspie Spice Cosplays
  • Comcast is incompetent, not evil
I'll try to make an effort to catch my blog up, but don't bet on it until Pensacon, which is gonna be a FANTASTIC experience.

In the meantime.... here is this picture that totally describes my prayer life, and the resulting life life that goes with it these days...  




Tuesday, March 15, 2016

The Monkey Chased the Weasel

My blog.  My rules.  Just Sayin'.

I have been in a right bizarre circle this past six months.

For me, the hard road is the one that yields the best fruit and I find that as I circle this same damn fruitloop of an intersection over and over again, eventually my own momentum spits me out.  Then, there is that hard landing on your ass part that is unpleasant at best, and downright painful at its worst.  Here I sit, again, ass sore and raw from a thousand botched landings, wondering if THIS TIME I might just be able to get this right.

It is an unfortunate truth of life with PTSD that you experience your story as a series of repetitive events---events which do not resolve until the emotions that were originally associated with them are experienced and put to rest

So, you live life on this circular spiraling path.

Lately, mostly I circle drains.

In the spirit of changing that dynamic...  here's something I'd like to share from the vault of things that sprang into being as a result of the difficulties I have lived.  It is an excerpt from a larger work, but it strikes at the core of what I want to amend right now, right here:

From Tenure of a Mystic, Mvt. 5 "Communion" (link to the whole poem:  https://www.scribd.com/doc/304893477/Tenure-of-a-Mystic-A-Symphony-in-Five-Movements):

The dark is not
because of us.
We did not make it
on our own.
We borrowed it when needed
to hide our pain
to cloak our rage
to mask our sin.

No one knows this better
than those who’ve
suffered from the dark
that others used
to mask their sin
to cloak their rage
to hide their pain.
BUT—victims who seek
justice
often fail to look
past judgment
and He clearly told us
we could not know the hearts of men
but what is pain to do
but seek redemption, rescue, and release?

It’s hard to see what’s real, what’s true
when all around you is deception
blame and muffled screams
of victims and of perpetrators lost to God
by sin and power.

Power chooses, steals His children
and in isolation
re-enacts a chain of pain
so ancient no one to this hour
can remember
there was a source.
There is a cure.

My mother tried to school in me the ancient curse:
She taught me that if I would listen I could KNOW, and then believe my eyes:

the difference between Good and Evil.

The fruit of the tree
a nightmare—
so like unto God but never God—
able to see but not redeem

Was that the agony, my Lord?

Could you see us as we were and know
we never really meant it
and know you could not stop us
know we could only be saved if we chose

You.

Yet, choice demands belief
in what we cannot see
or else we choose
the visible
accessible
the tangible
which we can grasp
without the tourniquet of faith,
and choosing all too often
what regards us best
we fail
and cry to God
What NOW?!?!

The answer is preceded by a question—
“Do you believe that I can do this?”

The simplicity of which is only
truly comprehensible for those who have escaped
the strangle hold of reason and entitlement.

For me,
it is hard:
this seeing in the dark.

It draws me ever closer to this God,
this God of Abraham, Isaac, and Jacob,
but fear is omnipresent:
my hourly battle of barricaded will
          what will I see
          what will I choose
          what will I act upon
          what will become of me
if I surrender
to His power, love and grace
and disappear
among the ruins of the desert
to serve in silence
in the dark
alone with Him I cannot see
but never am without,
surrounded by people
still harassed and harried
people with the power
each and every one
to harm, to heal, to kill, to serve
and using it
aware or not
that using it
is garden, desert, garden, death,
is resurrection, promised or implied,
is mechanism of damnation or redemption
action of imperfect elements
is body, blood transformed
in us to hoard and share
as we do deign to try
to BE the instruments of God.

The wisdom of the cave is you can see in the dark,
but only when you realize that you yourself are blind.

The wisdom of the desert is that those
who seek surrender, silence, weakness
always find Him, finding ALL.

The wisdom of the kingdom is that the children
of the Most High God
cannot be contained simply because
our need for power
consistently demands an ordered world.

The wisdom of communion
is that I could not once by force of mind
or force of heart redeem myself
but yet I am redeemed:
the mystery of the living God.

The songs of children I have loved and served—
become as flower petals on the path.
My fading earthly light
reveals revision of belief,
transfigured by His brightness
brought within
cassandra 33
brought along
each step upon the path—
a ransom and redemption.

Grace forgives our broken choices
while our human hands and hearts and voices
can yet salvage the imperfect soul within
because He gifted us with silence that resounds
He gifted us with sight to gaze upon the dark
and even those who see
the impossibility of Faith sometimes remain,
and choose belief
and choose to face each other
as we eat and drink of Him
becoming us
and reach together toward the eastward rising Son.
SoĆ°lice

-cassandra
revised 2009


Monday, February 15, 2016

New and Important Milestones on My Journey

The photo to the left is of Mass at Musica Sacra's Colloquium from a few years back.  It stands in my mind as the pinnacle moment in my search for authenticity in worship.

The colloquium Masses stand out in my mind as some of the longest two hour Masses of my LIFE, because, in Salt Lake City that week, inside St. Madeleine's, the temperature was often about 90 degrees, and my autistic son was having NONE of it.  I would be in a pew, near the sides, and he would be okay for the first hour or so, but as the temperatures climbed and the Mass continued, his patience would blow out like a cheap tire on hot asphalt going 100 in the desert.

There were moments, during those beautiful Masses, that I sincerely wanted to throat punch my then 8 year old child.  He was a beast.  But I endured it, and continued trying to redirect him as patiently and lovingly as I could.

My inner editor just yelled, over a bowl of popcorn: 

"HEY---maybe you could get to the point a little sooner, this IS, after all, the INTERNET, and people don't generally truck with all that talking and no point..."

Fine.

As readers of this blog know, Mass was a nightmare.

Autism and echoey spaces that require that you be still, quiet and do what everybody else is doing are NOT AUTISM FRIENDLY.  Trust me on this.  All the good intentions sail down the toilet the minute an autistic child is actually sitting behind you beating his head on the pew because the music is painful (don't mind his professional choir directing musician mother who would also like to be beating her head on a pew, but settles instead for a gruff constipated-looking judgment single eyebrow raise flashed in the direction of the "musicians" du jour up there with their microphones and terrible liturgical ideas....)

Inner editor is at it again:  "SO WHAT IS YOUR POINT PLEASE?"

Slow down, I need to write this in order, so people will understand...

"THE ONLY PEOPLE WHO READ YOUR BLOG ALREADY GET IT..."

Fine.

Go back for the back story if you're new around here... it's in the post "Things I did Wrong with My Autistic Son".  I'd link to it, but frankly, I have no idea how to find that stuff either, so good luck with that.

"WHAT IS THE POINT AGAIN?"

After three years of hiding from Mother Church, on impulse Sunday, I dug my son's Missal out of the bottom of the desk drawer, threw on a dress, a snood, and a jacket, and we raced to the car and drove like I was on a NASCAR track to the bowels of Pearl, Mississippi, and we went to Mass.

No, we did not take communion, in case you're wondering.  I have not been to confession, and I don't believe in the "let's all take a walk so we can get attention from the priest" form of "getting a blessing" at communion thing... It's up there with NO, I'm NOT shaking your hand during the Peace, you disease-ridden child.... Eric was very concerned about why we did not take communion, I told him I'd tell him when we got to the car.  So, I was nicer to you, dear reader, than I was to him in the moment...

"HOW DID IT GO?  THAT'S THE ONLY THING THEY ARE STICKING AROUND FOR AT THIS POINT..."

Eric was super enthusiastic.  He said, as he was going through his Missal on the way to Mass...  "This is a GAME GUIDE for MASS."  Yes, my dear and darling boy, the Missal is a game guide for Mass---it tells you where the secret rooms are, gives you the scripts to say to open the doors, and tells you at every turn how to properly "DO" Mass...  Thank you for the metaphor, I'll never get that out of my head now... but he was so happy.

At Mass, he fidgeted mercilessly, but tolerated the redirections:

Put your arms down.
Use you upper octave voice, that man voice isn't quite there yet, but soon... (WAAAAAAH, he is losing his soprano voice, and the mommy part of me is in agony... )
Put your ARMS DOWN.
Do what everyone else is doing.
NO, you can't put your ass on the pew when you're kneeling..
YES, you CAN kneel for five minutes without needing emergency medical intervention.
PUT YOUR ARMS DOWN!
When you turn pages in your Missal during the sermon because you got bored 10 minutes in... please don't do it in the NOISIEST MANNER POSSIBLE...

But, he tolerated it all so very very well.
Then, we got in the car, and for that nasty interrupting internal editor's edification, here is the "money quote of the day"

"Mama, we need to go to Mass from now on."

Okay, I'll start making a list for confession, and take a deep breath, and stop being a whiny, prideful, brat of God and get my ass back in the game.  We have a guide, and everything.

Toodles


Thursday, October 22, 2015

Dalek Shooting Gallery for TEAAM Autism at Fear Fete

The whole team for TEAAM Autism and the Dalek Shooting Gallery Booth
Dark Smalek, Bryan Tibbetts, Mark Yeager, Garrett Yeager, Anna Yeager, Claire Scates, Eric Bedell and Myself
TEAAM Autism and the Metro Whovians worked Fear Fete this weekend, raising awareness, promoting acceptance, and providing a social opportunity for those affected by Autism Spectrum Disorders (ASD).  The Dalek Shooting Gallery booth gives convention attendees a chance to shoot laser guns at Daleks and interact with the remote controlled Dark Smalek robot while learning about ASD in a family-friendly environment.

Being the first time we have put all of this together, there were a few hurdles here and there, but all in all, the endeavor allowed us to meet people, spread the word about TEAAM Autism, and raise money.  The highlight of the event, at least for me, was this one little girl who kept coming back.  We have a way to make the targets easier for little children, and so when she'd come around, we would pull the covers off the targets and let her shoot to her heart's content.  She was adorable, and everyone on the team had a great time watching her giggle and play with our toys.

Adults have to shoot smaller targets, because it's more fun if it's a challenge. Anyone who managed to shoot all the targets was entered in a drawing for prizes.  Prizes will be awarded this afternoon (Thursday, October 22nd), and announced on the TEAAM Autism Facebook page.

You can be part of the fun by joining us on the convention circuit!  We will be bringing Dark Smalek and the Dalek Shooting Gallery to the following conventions, with the help of the Metro Whovians.  Come in a costume, or just come as you are, and shoot Daleks for TEAAM Autism!  Test your marksmanship, leave a donation, win prizes:
  • Geekonomicon, December 11-13 at the Mississippi Coast Coliseum
  • CoastCon, March 4-6 at the Mississippi Coast Coliseum
  • Southern Geekfest, April 2nd, at the Forrest County Multipurpose Center
Additionally, all conventions have some element of "cosplay," so if you've never tried it, I'd definitely encourage you to google any character from film, tv, comics, manga or video games + the word "cosplay" and see what other people have done.  The sky is the limit, and since it's all for fun, it doesn't matter what you decide to do, as long as you are having fun!  This past weekend at Fear Fete, the cosplay around us was fantastic... I even got to be a judge for the Junior Division Costume Contest.  Here are some of our favorites:

CEO of TEAAM--Dr. Mark Yeager, and Claire Scates with Dark Smalek

Dark Smalek and Bryan Tibbetts
Junior Costume Contest Best in Show "Edward Scissorhands"


Junior Costume Contest 1st Runner Up:  Jareth from Labyrinth
Dracula, a Werewolf, and a Doctor walk into a convention...  hilarity ensues


Wednesday, September 9, 2015

Check out this crazy autism fact that no one has told you...

Clickbait titles are for dodo's.  I hope you in no way fell for that.

Here's what we're talking about today:  the inverse relationship between impulse control and allergy attacks.  When ragweed comes calling, just run for the hills because many of the people with developmental idiosyncracies that you know and love will turn into Tasmanian devils until it starts raining.  Grab a pollen count app, look at it each morning, and on a scale of one to "I'm screwed" ask yourself what kind of day to expect with your spectrum child (or ADHD child, or even your best friend with the coffee addiction...it happens to a whole bunch of children and adults to a greater or lesser degree, but people with impaired impulse control to begin with are WAY MORE LIKELY TO LOSE THEIR MARBLES so watch out!).

If Monsanto managed to accidentally kill off all the ragweed on the planet, I would not mourn.

Parenting someone on the spectrum in September looks like this:

Autism + allergies = constantly being forced to growl this question through a clenched jaw and shocked countenance:  "WHY THE HELL DID YOU THAT?!?"

It's always such fun to weather the September and April versions of this storm.

For example:  yesterday, my son managed to have an aggressive fit on the playground because he got out there too late to "pitch" in kickball and he didn't have an aide (due to a series of unfortunate events in SpEd) and no one realized that he was three sheets to the wind (even though I sent them the pollen counts and warned them ahead of time) and likely to have the impulse control of a gorilla on meth.

So...he led with his ever popular "gorilla on meth" personality.

This ended badly for him, and another child, who had what is best described as a road rage "fender bender" during kickball.  *sigh*

I pulled him from school today, and we spent the day going to a doc in a box, who for shits and giggles decided that a decadron shot and some rocephin would set the world to rights again...

Autism + Decadron = steroidal insanity
Let me tell you about decadron:  it can make a rational human being decide they are effing bulletproof.  In my case, it made me decide I could help send a choir to Rome by raising money doing nothing but baking my admittedly fantastic cinnamon rolls.  To my dismay, they were a hit, and so my decadron-fueled delusions of grandeur and need to honor all commitments I make no matter how insane they were when I made them,  resulted in my having to bake cinnamon rolls for the next 24 weekends straight...  I really regretted that one, so let's all pause for a moment and consider this:

HE GAVE THE AUTISTIC HELLION DECADRON.  A STEROID.  

Which will most likely help the allergy problem, but first we have to survive the cure.

So..this afternoon, I took him outside for more sunlight so that his body could fight off the tonsilitis caused by the constant dripping of his sinuses, and turned on the sprinkler.  Then, I took my handy-dandy portable bluetooth speaker out there, cranked up the Foreigner (Hot Blooded, Cold as Ice are his fav's) and proceeded to let him run screaming and laughing through the sprinkler and dig up mud with his bare hands for an hour.

Hopefully, he will sleep soundly and his body will purge the psychotrippy steroids a bit and back off the allergies and life will start to return to normal.  Either that, or I'm going to be living in a Tom and Jerry cartoon for the foreseeable future, because it is clearly NEVER GOING TO RAIN.

Wish me luck.


Reflections on the Death of a Neighbor: Iterations of Autism


Last night in our cul de sac, someone died at the house across from me.  I do not know if it was their disabled (probably autistic) teenager yet or not, but I watched for hours hoping to see him pop out of the house, with family in tow, distraught and surrounded... three hours I sat there hoping.  He never appeared.  I wish I knew them better.  All I could think about was "what happened, and was it him, was it the monster within, the one we pretend isn't there, the one driven by repetition, iterations, and chaos, the one that chains minds to the purpose only, never connecting, never forgiving...did it destroy him and his family?"  
 Chaos theory is the study of nonlinear dynamics, in which seemingly random events are actually predictable from simple deterministic equations. 
So... you might want to skip the next paragraph that is probably a bit "TLDR" but it has a brief overview of fractals, and how I came to understand them and why they relate to Autism:

From tiny Mandelbrot sets, did giant complex iterations grow:

The evolution of fractal software has been fascinating and intimidating to witness through the decades.

In the early 90's, I had a software program called "Iterations." To use it, you applied equations to a simple "mandelbrot set" (see top image) to create fractal images.  Periodically you would make something astonishing, after applying random series of equations, and find yourself saving enormous graphic files on tiny hard drives, waiting impatiently for the day your computer was big enough to hold your imaginary iterated fairy world.  They could not be printed, because to print them would make them static.  The images themselves behaved like living beings...you could continue zooming in to whole new, but eerily identical structures, searching within spiral arms for wonder and beauty.  Then you could briefly freeze it, take a snapshot of your screen and keep it, but having trapped it in a static form, you felt a little empty looking at it later...

Today I mentioned to a friend that my son was an iteration of his father...

Truer things have never been said.

Autism in this family is quite unmysterious because it is pervasive.  My experience is vast, but when I look at my son I try to zoom in on the spiral, hoping to find wonder hiding among the replications of behavior, mannerism, posture, misapplied reality-testing, psychotic rambling, aggression, sorrow, and isolation.

I take snapshots, hoping that if I expand that portion of the equation, I will find something new, something beautiful.  In the end the snapshots are empty.  The pattern continues to replicate.

Admiring the beauty that you can find only if you define the repetitive form as beautiful because it is intricate is not the same thing as finding beauty.  The first thing relies on your choice to perceive it as such.  The second is a more Platonic formal idea of beauty, where beauty is reflective of perfection.  I can love my son because I choose to see these snapshots as intricate and valuable, but I can also hate that he is, in essence, a series of iterations, repetitions, and mathematically precise and tragically predictable chaotic forms.

My son, as "seen from a helicopter", is a person who reacts to events around him the same way every time, expects and needs events to unfold in ways that fit the equation he has defined, and never quite shakes the pattern.  Just like his father before him...

I seek comfort and connection in both my neuro-typical child and people outside our family because it is very lonely on the edge of the iterative autistic world of my son and husband.

In essence, my emotional hard drive is completely full of snapshots now, in a vain attempt to comfort myself within the repetition.  I endlessly chase the idea that their iterations are somehow meaningful, and not just numbers in the void.  I hurt and ache for companionship, something that breaks them out of the pattern so they can really see me or anyone else for that matter.  I fail spectacularly and (ironically) repeatedly to really impact the monster, and hopelessness sets in.

I can fight off feeling hopeless that my son and husband are locked in mortal combat with their iterative thoughts, but I have to do it by re-interpreting the pattern and imposing my own need for spontaneous, genuine connection on it, with or without their cooperation and consent.  I also get away from their thinking regimens regularly and interact with the NT world without an autistic person to care for standing right beside me.  I believe our ability to help as caregivers depends entirely on our ability to stay sane and NT and shed the iterative thought process and NOT do it ourselves because it is how we have to communicate with them.  That staves off the hopelessness to a degree, but it usually returns.

Iterations are a prison.  If your goal is to break your loved one free, and you know in your heart it is impossible, but you keep trying anyway... how can you tell if they ever really know why you tried and why you were the source of their frustration, why you wouldn't let them just replicate thoughts, behaviors, actions, why you insisted that the different was the pathway...

May God have mercy on my neighbors.   

Requiem aeternam, dona eis Domine, et lux perpetua luceat ei.  Requiescat in pace.  Amen.

The bell tolls for thee never had more meaning for me than at 1 AM this morning.

May the Angels lead you into paradise...




Tuesday, September 1, 2015

How to Bury the Lede

Try a shovel.



For three years I was utterly miserable--near-vomiting-most-days miserable.  Doctors could find nothing they understood (though honestly they barely even tried), and so I lived off of zofran and when things got worse, zofran + xanax, because that's what they give chemo patients.  That sick.

Then, I spent six months in hell with the Hep C treatment, which made me more sick, had dangerous side effects (like fainting spells from anemia, more nausea, anxiety, and digestive problems that are best not discussed in polite company).  No, I've not done drugs.  No, I did not have illicit sex.  I had a blood transfusion at 11 years old...I'm DAMN lucky to be alive, and damn grateful for the cure.  However...

...I spent six additional months recovering from the six months of Hep C treatment, where all I wanted was to GET ON WITH MY LIFE by first losing the 50 pounds I gained through all of that yuck of the previous 3.5 years.  I wanted to exercise, too, but was warned off of that pretty quickly by my Hepatologist.  They know.  They just don't tell you that the damage done by Ribavirin to your bones, blood, and teeth, is significant and takes a LONG time to get past.

But get past it I have at long last.  Watch out world, here I come....

....and THAT is how you bury the lede.

 Toodles