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

Saturday, August 8, 2015

Autism Acceptance in the Public Square...Next Case, Please

Courtney Barnum, over at Kelly's Thoughts On Things, published an article which touched on the problem of our autistic kids not getting invited to parties, and I wanted to re-post it here.

Getting left out of parties is one of those social issues for my autistic son that I put so far out of my mind, I didn't even think about it when I posted my first thoughts on acceptance in the public square (previous posts).

It's another vector of rejection. It is common to invite everyone in the class to a birthday party (required at our school if you plan on handing out invitations there), but it is has also become increasingly common to invite everyone BUT the disabled kid (pick a disability, but autism wins).   She makes some good points, especially about family and close friends assuming you won't come instead of asking:

"It’s hard when your kid isn’t included. We know how amazing our children are. Sadly, others can’t see that. Judgment clouds their minds. They assume our children are bad or a problem or a handful.
Get to know them. I promise you won’t be disappointed.
You will see life from a perspective you never expected. You may even learn a few things. Like tolerance, acceptance and perseverance.
Our kids deserve that and more." 

Full article here:  Don't Forget Us, We Matter!

Give it, and the other good Autism articles over there a read.  My conclusion after reading for a little while:  Apparently, I'm not actually barking mad.  The problems of inclusion and acceptance in the public square are real, and present, and NEED to be addressed better.

Perhaps my experiences locally with my autistic son are not that unusual, after all.

I believe people CAN learn, and they can adapt, they can include, and they can accept, even someone on the autism spectrum who they do not at first understand or relate to well.  They just have to make the decision they want to learn, adapt, include and accept, and then get past their own sometimes weak spirited and/or prejudiced beliefs and reactions.  Yes, it is easier to associate with people who are "like us," but...um....not to put too fine a point on it, but that has, as a general principle on a societal level, never worked out very well.

So, go read, and look around over there.  They say a lot of what I'm trying to get at in my own thoughts here in the backwater of the net that is my momblog of doom.  :D

Toodles

Thursday, August 6, 2015

Sticky Fingers---The Dilemma of Autism Parenting

This is the first day of school.  Usually, I have some very important thoughts just racing through my fingertips, trying to escape into the machine where they will be safe and not trouble me for the rest of the day.  Today is different.  It has to be.  I can't keep going like this, it will eventually destroy me. I need to find a way to believe that my son will really, truly be okay at school this year. 

I hear a lot on the interwebs about autism moms having the same stress levels as combat veterans.  Piffle.  Those actual studies were about management of the child's behavior leading to measurable residue of stress.  (SEE one of them HERE).  My son's behavior is not what is causing me personally so much stress.  We worked that out through the years and it's nothing up against the stress of the uncontrolled, untameable world, which has hate and prejudice and is full of bureaucracy.  It's those helpless moments as the machine grinds over your family that make life so incredibly hard on me.

Things I cannot control:
  • The competency level of the professionals who will work with my son today
  • The mood of the professionals who will work with my son today
  • The mood of the other children today
  • The dichotomy between the promised schedule and the actual schedule
  • The dichotomy of his IEP vs. actual instruction/evaluation
  • Decisions made by other people that result in harm to my child because they did not adequately prepare or learn about his needs/deficits/strengths
  • My internal reactions to any and all of the above
  • MIDDLE SCHOOLERS
  • My son, while he is not in my custody
  • People's willingness to educate themselves about autism
  • People's willingness to understand autism
  • People's willingness to be inclusive of the autistic person in their midst
  • People's reactions to my son's quirks and oddities
  • PEOPLE.  Period.
  • How a souffle will ultimately turn out the first time (this is a red herring, meant as humor, but also relevant to anyone who has encountered the term "souffle girl" and frankly if you are reading THIS blog and don't know the term, maybe we need to have a few drinks and sit in front of a tv screen for a while and shoot the shit and get to know each other, because clearly you haven't been around me or my family long enough to know us even rudimentarily...)
Things I can control:
  • I can comport myself calmly and kindly, even in the face of challenges and unfair attitudes
  • I can comport myself aggressively and forcefully when someone does something egregiously wrong and endangers my child
  • I can forgive
  • I can move on
  • I can understand my own PTSD symptoms and differentiate those reactions from the real-time event and scale down my reactions when the situation is not actually dangerous
The STICKY FINGERS PROBLEM, in a nutshell---

If I trust you with my son, and you fail him,
I will not trust you as much the next day.
If I feel I cannot trust you, I will try to prevent you from harming him,
even if you have changed.
If you feel like I do not trust you, you may be defensive
before you even see or hear from me.
If you feel defensive enough, you will lose the ability to change.

It's a centrifuge.
All I ask of those who work with my son is that they listen to the people who do it well and trust that what we say is true and valuable.  I understand that not everyone will be good at this, and that is okay, as long as they are trying and do not get defensive when criticized, corrected, or encouraged to try things a different way.  Some of the autism symptoms are nearly universally true, and the interventions that the autism experts around you are suggesting are good and work well.  Understanding that experience trumps any notions that you may have about what's "really going on" will yield good results every single time.  

This is me, trying to get my sticky fingers out of your business.  Earnestly trying.  I'd like to just drop my son off with you and trust that you won't hurt him.  Sadly, experience has taught me that if I don't stay right there and keep tabs on what you are doing, he will get hurt.

By hurt, yeah, I mean emotionally, and that sucks, but that happens to all kids at school on a regular basis so that is not what I'm talking about right now.  However, what sucks more than ordinary emotional hurts are trips to the ER for concussions because you did not believe me when I said he has balance problems.  The fact that that happened three times, combined with many many other 100% preventable episodes in the past, made me the way I am.  I apologize in advance if I did not control my sticky fingers well enough when we first met and you already feel threatened and defensive.  I am defending against actual harm.  You are defending against perceived judgment of your capabilities and professionalism.  Let's meet in the middle.

Even the best intentioned folk get it wrong a lot.  

Autism is not that mysterious anymore.  

My son is more than his diagnosis.  He is a beautiful, loving kid who tries harder than anyone will ever really know.  I asked him what his greatest fear going to his first day of school is and he said "That no one will like me."  That is not an autism thing.  That's an 11-year-old boy thing.  He's not a freak of nature, he's a kid, and he has the same frustrations and fears as the next kid.  Unfortunately for him, he is inside out, and you get to see ALL THE THINGS he thinks and feels without a filter.  

So...good luck guys.  I trust you today.

Toodles.


 

Monday, August 3, 2015

Sometimes Random Things are So Nice


Like taking your favorite photo ever in your own backyard, completely by accident, and then getting to use it as your desktop.

 Other random happy things:

Having our story in a magazine for a tv show we love
 Twitter being fun for a few hours
My idiot cat spastically chasing floor debris
Clean laundry
Balanced and budgeted finances that are currently not terrifying
The prospect of fun at conventions
I have a Dalek in my living room
The uniform store has ALL the sizes
Sperry deck shoes FTW
Chicken Tacos ala ME
Not being sick all the time
Rain would be nice
You read this

And another picture I took that makes me smile:



Toodles!