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

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...

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

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

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.

 

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!

To the Parents of NT Children: How You React Matters! Autism Acceptance, con't

Captain Gilly Wants You to Know He's Really Not the Enemy

Mandatory education shoves everyone together. Diminishing SpEd ranks mean more disabled kids in classrooms, and less staff to manage their behavior properly, which leads to more of a chance of a culture of resentment developing.

We have to get past that outside the schools.

The schools have no choice, and the kids in them have no choice:  they all have to be clumped together for 6 1/2 to 8 hours a day, five days a week, 180 days a year.  If things go wrong in the classroom, it is a very different "wrong" than the NT(neuro-typical, i.e., NOT spectrum children) may have any insight into whatsoever.

Judged swiftly and harshly many times, the spectrum kids are often whisked off to another room, like they did something wrong.  It's not that THEY did anything wrong necessarily.  Even if they did, the solutions to keeping it from occurring again are complex and must be implemented by people who understand how the autistic mind works.  It could be that their accommodations have failed, that teachers were not able to apply them adequately, or even that there is some unknown random disabling factor that led to an incident in a classroom.

Blaming and shaming are pointless.  Half the time the ASD child cannot even adequately recall what happened in the first place, because their focus is on some minutiae that isn't even important.

Parents at home may hear stories about the spectrum kid in their child/children's classroom and draw erroneous conclusions based on those stories.  It is VERY unlikely that an NT child has a clue what actually happened and their narrative of what they remember probably bears little resemblance to the actual situation.  There is also the added difficulty that teachers and staff are somewhat bound by privacy laws not to explain things adequately.  Sometimes, it might be helpful for a parent who feels like their child was harmed somehow to hear that the incident in the room that concerns them was not directed AT their child, and was the result of a series of stimuli that added up to a meltdown.  They might also need to hear the timeline to assure themselves that the meltdown was brief and managed properly.  I think explaining HOW autism works to people with questions, and being specific might help people be more compassionate.  Explanations might also help the parents of neuro-typical children challenge the assumptions their children make in narratives about school days and provide a valuable insight into how all of us can make things better if we try.

I know for my son, there are occasional meltdowns and outbursts.  They are NOT the norm.  They are rare, in well-managed settings.  Unfortunately, they are less rare with teachers who are overwhelmed, staff/teachers who do not believe that autism is the root cause of most difficulties and therefore do not apply the abundant accommodations that make classroom success possible, or situations that no one could control or foresee (the snow cone guy did not come as promised, after two weeks of using potential future snow cones as a behavioral control measure which the behavior specialist would probably have told you was a TERRIBLE idea in the first place...etc.).  When they do occur, my son has his own strategies for calming down, and the SpEd staff who knows him very well, can usually return him to regular life in the classroom quickly.  This has all been dramatically improving with every year.  I know his fellow classmates remember him when he was younger as someone quite difficult to manage, and I do hope that they have noticed how much better he is with each passing year.  He deserves that.  He works hard.

When an NT child is narrating something that happened with the ASD child in their classroom, I can understand the gut check a parent might have about things they are hearing.  I understand because I HAVE an NT child, also, and I had many occasions to react to things she told me.  So, I'm no stranger to the gut check reaction at "stuff that happened at school."  However...I did not allow her to be ugly if we met school kids outside school.

Know this:  when a person on the spectrum loses their temper or reacts badly to change, they are DEEPLY embarrassed and ashamed that they could not keep those feelings a secret.  They are desperate to fit in, just like the others around them, and they often painfully, deeply imagine that when they cannot control impulses, everyone will treat them like they are a failure and not worthy of being part of the community.  It hurts to lose control and yell out, or lose your temper.  It is terrifying.  It is humiliating when you did everything you could to be a good person and be kind to others and be what other people expect.  I know this because he has told me what it is like inside a meltdown.  It is awful.

That awful is why there are SpEd teachers and behavior plans.  If you prevent the things are ARE controllable, meltdowns stop.  Dead.  None happen.  My son is a happy, contributing member of the classroom and no one notices because he is quiet when things are going well.

Now, to the point--- no matter what you heard about school from your NT child, the ASD child at the park or the pool or the playground or the concert or the fireworks show may NOT be anything like the child you heard about from those narratives.  A narrative generated by a child or a teacher who is trapped in a room for 6-8 hours a day is not always a reliable yardstick to assess the person outside of school. In their families, most ASD people are calm, happy, smart, funny, gentle and deeply empathic people.  They LOVE making others happy, and have a great deal to contribute.

If all you have encountered is the narrative of the person in the room you've heard about, and you react without actually interacting or paying attention outside of the room, you will miss out on a friendship, a smile, or just a fun few moments.  The least you can do is not make life MORE difficult by judging the child OR the family.  Autism is hard, and it gets better slowly. 

The conversation will continue....

#learnbeforeyoujudge

Doctor Who Magazine #488

OUR WHOLE FAMILY IS IN THIS ISSUE! SEE PAGE #2 *SQUEEEEE*

In America, these don't come in to Barnes and Noble and places like that until August.  Waiting so impatiently to get our copies...  Photo credit for this goes to Lisa Helena Roberts for posting pics of the issue!!!  So grateful to have the photos.  Thanks for letting us get a glimpse of the article!

So...what did you guys do this summer?  We seem to have made a tiny little splash into Doctor Who History.  It's an incredibly fun moment for all of us.   Eric will always be able to remember that time when he was in Doctor Who Magazine with his family.  :D

Second Time at Kamp Was FANTASTIC! :D

Smiles are worth their weight in gold around here.  This one's a DOOZY.  Friendship and shared interests make big smiles.  Thank you to the staff, volunteers, donors and everyone at Kamp Kaleidoscope.  I will continue to help raise money for this place.  It's a WINNER.  :D

The second time around wasn't planned, exactly.  A last minute slot opened up and my father helped us take advantage of it and off went da Creature to Kamp.  When I picked him up, he was beaming, proud to tell me everything he could about everything.  There were less complaints about food and sleeping and other kids and way more narrating about ziplining and swimming and happy times with other kids. 

So the next time you see our little costumed ambassador for Autism, please ask him about Kamp...he would love to tell you how much fun it was and every single reason he can think of why everyone should be going.  I'll be interested to see if he is more enthusiastic now about working conventions since he now really understands why we do it.

Toodles!

Autism in Public Spaces: How We Convince the World To Make Room

When the kids at the pool are mean...cheerfully clean up after them

 "Hi, my name's Eric, can I play with you guys?"

It's a simple enough question.  What I have observed is that there are mainly three responses, at least in the area I live in: 

1. An awkward mumbled "sure" that is followed by a few minutes of trying to figure out what my son is talking about, and some attempted corporate play.
2. Laughter and sustained ridicule from a distance.  
3. Occasional, but rare, real inclusion of the ASD child with a random group of kids. This is usually the result of either the adults or the children involved "knowing someone" with autism and making a choice to overlook "weirdness" and make room for the child.  We need a LOT more of this out there.

Number Two is what we MUST change.  In a world that has chosen to require acceptance of all manner of individual expressions of humanity--- race, gender, love, lifestyle, disability, etc., there is still so much distrust of the "different" that pursuing "acceptance" has become the ground war of the 21st century, and based on results, children, teens, and adults with Autism Spectrum Disorder are still faced with a great many challenges when they try to be part of mainstream society.

We can do better.

What happens when a family with an ASD person is faced with dealing with rejection and/or social pushback every time they try to participate in normal civic activities with their autistic child/teen/adult?  Often, they simply quit going out there at all.
 
Do you know a family with an autistic child?  Did they vanish from the places you used to encounter them, either slowly over a few years or dramatically over a few months?  Were you secretly glad you no longer had to "put up with" their child's behaviors and hear stories about what the family is "doing about" those behaviors?  Did you let that family disappear by not calling them, or no longer inviting them to things?  Did you quietly, in your own mind, decide that the parents were just "not doing parenting right"?  Did you tacitly sit by while your kids played with the other neuro-typical children you approved of and avoided the clearly autistic child in social settings?

Now I'm talking specifically to you:  YOU can do better.

As families impacted by autism, we are doing all we can.  Trust me on this.  It may not be the "all" that someone else has done, because families are complex webs of human beings who rely on each other and society and "resources" to survive.  Stressing the web causes it to warp and change so available resources (emotional, financial, intellectual, physical, etc.) may have snapped at some point and the family may no longer be coping well, but I PROMISE you, they are doing all THEY can to work with their family member on the spectrum.  It's not really about YOUR CONVENIENCE, you know.

Okay, I get it... "weird" is only cool when society chooses to believe it is cool, and in this ground war for acceptance, "weird" is the first red flag that gets attention, signaling that maybe something is wrong, and maybe we should just back away to avoid getting involved.

On the other hand, maybe you tried, earnestly, to not let that family drop off of the radar.  Maybe you really do care a LOT and went seeking information, looked up things to read about on the internet, talked to people (everyone you could find who had some connection to someone with autism), and maybe you have figured out what the family REALLY needs to be doing.  Thanks.  Keep that shit to yourself please.

Don't like that response to how hard you tried?  Suck it up, buttercup.  It's not about you.

------------------------------------------------------------------------------------------

Here's what you CAN do to include someone with ASD (first we will tackle "stranger encounter" tips):

• Require your child to include outsiders in corporate play.  It won't hurt them.
• Require your child to be polite.  Accept that the ASD person has different criteria for "polite" than you do.
• In the event that the "weird" kid is insulting or loud, or confusing, or gets his/her boundaries all wrong and declares your child "my best friend ever" after three minutes of play time...let it go.  Try to assume your best "he/she means no harm" attitude.  If whatever just happened won't matter in five years, it doesn't matter right now.  
• If you need to engage the caregiver (who is probably already intervening before you even get a chance to go over there), please choose to believe the best of everyone involved.  The worst thing for a stranger encounter is that dreaded sense of "I must defend/explain my child" to someone who has already decided the child intended harm.
• Check your prejudiced judgment of the caregivers' parenting/grandparenting/babysitting.  Does the judgment help?  Does it solve problems?  Do you have the training and skills to make that call?  Has your little darling never done anything you wish he/she hadn't in public where everyone makes these judgments?  

Here's what you can do if you know the family, even peripherally, and you encounter them in a public space (These are things that might just keep them from dropping off the radar and vanishing):

• Assume nothing
• Ask direct questions about what you should expect.  Listen to the answers.  Believe them.  The family KNOWS what the spectrum interaction means for their loved one. 
• You really don't know THIS family because you know THIS OTHER family.  
• When there is trouble on the child level...just because the ASD person is the most memorable, they might not be the most likely cause of the problem.  So, we're back to ASSUME NOTHING.
• If the ASD person did in fact start something, it's probably not what you think.
• Assume nothing.  It's important so I'll repeat it.

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A personal anecdote:

What happened at the pool in the hour before I took the picture of my son with all those silly noodles?

Well, unfortunately, the response to "Hi, my name's Eric, can I play with you guys" was a full blown #2 and he was met with humiliating and ridiculing rejection.  The mother sort of tried to require her child to play with mine (told him to go play with mine after I stared hers down as he was laughing at my son), but in the end, did not actually require anything of her son or his playmate.  When they went to leave the pool area, her son dumped all of those noodles you see up there into the pool.  She watched him and did not require him to fish them out.  Since it was closing time,  my son decided to do the staff a favor and go get them out.  The staff appreciated it.  But the heartbreak for me as his mom was that he was more aligned with the staff that with children his own age.  How much would it have diminished their hour in the pool to include him? 

So, how does it happen, how do you end up deciding not to go out in the world with your ASD child?

Our family's decline into social isolation happened like this:  I would take my family out in public, we would try to control my son, he would get overwhelmed, he would get noticed (though he was hurting no one, the noticing usually came from his stimming, or scripting, or loud and odd commentary, or his crying/refusal to cooperate with me, or.... you name it, it happened), and I would get stares and the occasional ugly comment.  In an effort to not draw my SON's attention to how different he was, and in a stupid effort to ease the discomfort of strangers wherever we went, I started to stop going out and doing things.


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The Take Away From This Blog Post:

Neuro-typical children NEED to play with ASD children.

They will grow up to live, love, and work beside them.

The world where the ASD's can hide and not bother you no longer exists.

If we don't get our children able to co-exist, we will create a giant class of adults who cannot work or play together.  That is a much more serious problem than you might think at first.

Schools are increasingly separating out the ASD people because it is more convenient to group them in order to manage them.  This leaves us with public spaces---churches, pools, parks, zoos, playgrounds, malls, restaurants, movies, concerts, events, etc., as the only means we have to keep our kids/teens/adult family members socialized and connected.  The task is urgent.  We must figure out, as a society, a way to include the "weird" and the "different" and the "challenging" because if we do not, we all lose.

A quick case study and a cautionary tale:

My autistic husband is a nuclear safety engineer, one of about four people in the country who can do what he does to keep all of us safe. In our locale especially, where there are five nuclear power plants in driving distance, we need him.  His ability to do his job as well as he does hinges on both his ASD qualities and his internal sense of well-being.  Isolation impinges on that sense of well-being.  He still struggles out there with people's perception of him.  He still avoids too much interaction as a result. We all need him to be good at his job.  I need him to be kind and not overwhelmed.  You need him to stay good at his job, because if something goes wrong with one of those plants, unless you and I are good friends already...you're probably not gonna know which way to drive to save your family.  :P 

I imagine a world where my son and my husband do NOT hide to avoid the awkwardness of others' perceptions of them.   For my son, it looks like a whole lot of this:

"Yes!  My name is 'so and so'

and we're playing 'this game'. 

Join us!"

Kamp for da Creature, pt 2 of 2---"It's all about da Boy!"

The closing song with all the campers...mine is the the one facing the wall...  O_O LOL

He wanted me to know that Kamp Kaleidoscope was great fun, apparently.  Also, he immediately wanted to know if he could do a WHOLE WEEK and when could he do that and could it be soon? 

He also realized home is really a cool place he'd like to be, too, and this realization was perhaps the first of its kind, in like, you know, EVAH.    (Did I just do that gesture where you quietly pump your arm back while hissing "YES" under your breath?  Nope, I'm WAAAY too mature for that...  Way.  Too.  Mature.)  He likes my food, missed me tucking him in, and really likes his very own bed with his stuffies. 

All of this was communicated in and amongst the  "I got to zipline TWICE" and "there was a campfire" and "they did gross stuff at the campfire and I didn't want to do that, but it was super funny, Mama," and "I GOT TO SWIM FOR TWO HOURS!!!" and "there was roast beef" and "I liked my counselor" and "there was this kid named Thomas, and he was great!" and lots of talking about the counselor's friend's iPod and the occasional grumble that there was a kid who "HAS to watch movies to go to sleep."  I reminded him he HAS to sleep in total quiet darkness and that his way is probably tortuous for the kid who needs the movie.  I also reminded him that he has his challenges, too... 

But he did have an insight he shared with me after I fed him "the best fried chicken livers in the whole wide wide world" (We're not going to tell him that there are plenty of gas stations in the south with the very same friend chicken livers, right?  We can all agree not to spill the beans, right?) and it was one I truly wondered if he would arrive at (though I suspected it would occur to him in some form, I did not really expect the form it was communicated in)

"Mama, I'm really lucky.  Autism gets harder deeper into that spectrum, doesn't it?"

Did you hear the mic drop there?  Did I hear gratitude, in a quiet murmurous roar build and crash on the shores of his life?  Did he finally, utterly see it?  Will he connect it to the work that we were blessed to be able to do from 7 months forward (because I knew...not my first rodeo, not my first encounter with the beast that is Autism) and continue to do every day to keep him moving forward, always forward (occasionally backward) and toward a hope that he can find his place in the world?  I don't know.  I'll know more when he has to go back to doing PT every day tomorrow.  Ugh.  The first day back is always so much unfun for da Mama, as he spews every bit of venom he feels about being "different" all over me while grudgingly doing the things we must do... 

The insight will bear fruit as his life goes on.  He needs to know he can understand that deep end, and probably communicate there as his special gift.  He needs to know he can be kind, when others are scornful and mean.  He needs to know that he will get bigger, and so will everyone else on the spectrum, and the world we all create together (neuro-typical's and ASD's) will very much depend on how much kindness there is to go around, and how well people can translate for those who communicate in so many varied ways. 

He knows he needs me.  He now knows he is lucky.  He had fun.  He met people who did not scorn his idiosyncracies.  He was allowed space to just be, without my frenetic pushing toward anything at all...

He played, swam, ziplined, and laughed.  He criticized food and schedules and probably gave the staff absolute hell before the ziplining, and about the kid who likes opposite night routines, and they were kind and did not scorn his himness.

I will continue to work to help fully fund this place, to help it grow, and to ensure that more kids will be nurtured and befriended in the rural woods of Mississippi.  It's a fantastic place.

Now....go like the FB group and FB page already.  I know some of you intended to the other day but didn't get around to it yet.  The links are in pt 1, the post right before this one.  :P  

Toodles!

Kamp for da Creature---pt 1 of 2--- "It's all about da Mama at first"

So, I prepared, printed a list of his belongings, made him responsible for gathering the things on the list, checking them off, and explained how to use his sleeping bag's outer bag as a laundry bag so he has some reasonable hope of getting his suitcase repacked, after he *cough* of course remembers to check all his belongings off on the identical version of the packing list he has in a neat ziploc bag with a crayon inside his suitcase...

None of that is going to stick, or work, because this is his first time at camp, and I'm cool with that.

You have to start somewhere.
___________________________________________

Because I have recently volunteered to help with the social media arm of TEAAM, I've been serving as an admin on their Facebook Group...

(Please...go join the group as a favor to me, PLEEEEZE....Pwetty PLEEEZE....blah blah blah....social media groveling---  

you can find the group HERE and when you do, you should definitely share it with all of your friends with the following text----"I have a friend who is desperately trying to get the word out about this fantastic, one-of-a-kind social experience for children and young adults on the Autism Spectrum, and apparently she's offering to ship home-baked cookies to anyone who joins" 

[I'll kill you later for that one, when I finally get my kitchen clean again from baking the thousands of cookies that all of your followers require of me when they join the group]) 

...I have learned from other mothers (take a breath, this sentence continues... bwahahahahaha) that sending your disabled child to camp is stressful.

____________________________________________________

It's not stressful at all for me.  I dropped him off, cheerfully looked the staff in the eye, and said "Good luck with that" and walked gleefully to my car, which I drove straight to the movie theatre so I could see "Jurassic World" IN THE THEATRE!!!!! (ps---do not take small children to this movie, you'll thank me later, but it was great fun for this grown-up)

See...for the past 12 years, I've been chained to the care and support of a high-maintenance, high-stress child.  Oh, I tried child care, really, I did, but every time it was eventually (or immediately) disastrous, so I decided to suck it up and give up on trying to pay someone to take care of my child which was either the best or worst decision of my life, but it certainly ended my career and ability to be alone, like, you know, ever, really and it was hard. 

That decision had the added consequence of forcing my older, neuro-typical child to serve as emergency childcare when there were no other choices (like, when I had to be in the hospital and she had to miss classes at University, or when I had to have planned medical procedures, or when I was too sick to even take care of myself).  I suffered from tremendous guilt through the years at having to rely so heavily on her, but there was no one else.

My only other family is my father, and he lives in town, but he has a lot of people and animals to take care of himself, and, honestly, children have never been his "thing," so it has always been best not to stress him out with a child that lives to perturb the perturbable.  If you can face off with my son without getting your feathers ruffled, he feels safer, happier, and life will roll along as peacefully as possible.  Short of that---let's face it, you're SCREWED.

All of this to say that this morning I woke up when I wanted, cooked nothing (so far), and happily harvested basil from the garden which I will turn into solo pesto for lunch without apology or compromise.   It's like heaven.

For now.  Because I do know he is coming home.  If he were going to be gone for a long time, I'd be sad, but 43 hours does not count as a long time.  It's barely time for me to catch my breath.

This is why what TEAAM is trying to do matters so much to me.  One of the tenets of their mission is to provide respite for those of us who care for people who exist on the Spectrum.  Respite is rare, hard to acquire, and often fraught with risk.  To be able to assuredly send my son somewhere that he will HAVE A GOOD TIME WITHOUT ME is like gold.  

On a related note----My daughter is currently working diligently to devote her life to a vision---she is well on her way to being able to provide all-in-one daycare for disabled children.  They will get to play and live and learn alongside neuro-typical kids.  She will take her Physical Therapy doctorate, and her art skills, her camp training, her OT training, and her Kinesiotherapy license and add to it a business license, malpractice insurance, and hand-picked staff (including a Speech Therapist) and open a daycare like no other, at least no other available here.  A daycare where everyone leaves each day smarter and happier and where parents feel safe living however much non-spectrum-related life they are comfortable with each day.  Even the neuro-typicals will walk away each day having learned art, music, and empathy for those with disabilities.

If she succeeds in her quest to provide true daycare for spectrum kiddos and turn this feeling of freedom I have right now into a daily occurrence for other parents/caregivers?

That would be blessing beyond words.  I wish I could have not had to drive all over the town, all the time, to all the various necessary therapies.  I wish it had not had the effect of alerting my son to the fact he was different ALL the time.  I wish he had had a place where he could go, play, get his therapies in a quiet "it's just what we're doing today" environment where everyone "plays" the same way...these things would have made such a difference in my life as a parent.

Parenting him has been hard, and I live constantly with this feeling of being trapped by a love too great to give up or give in, but I promise you, it has been so hard.  When 43 hours of "freedom" feels like the best thing I've had in twelve years that is "just for me", you know this a difficult row to hoe.

So, have fun at Kamp Kaleidoscope, my darling baby boy.  I'm gonna party like it's 2003, and try to remember what I was like before my whole world became taking care of you.  Tomorrow will come, and I'll go back to making it all seem normal enough, and go back to making sure you are safe and moving forward, but just for today....

Toodles!

Adventuring? School boards? NOLA Time Fest? Daleks? Life on planet Spectrum continues...

I was trying to sort out my phone this morning and actually use it's photo saving software array, and found all the pictures from the Big Adventure of three years ago.  I have been toying with the idea of taking a mini-adventure with da Creature this summer WITHOUT having the benefit of da Firstborn's aid and assistance.  I apparently like to live dangerously...

So, where should we go?  What should we do?  What haven't we done?  Should we go back to Houston for Pirates of Penzance (which is admittedly a good idea, but airfare is overpriced and driving is horrible, so....I'm really on the fence about this one)?

Meanwhile, on the home front, there have been unsettling developments in our local school system, none of which I understand fully yet, but apparently when the local School Board votes on something they never ever get back to the people involved.  This can only end badly for Eric, but everyone keeps telling me not to worry.  I am not a happy camper at the lack of information coming out of the District, but what in the world can I, one tiny cog in a giant wheel, really do about it anyway?  Perhaps contemplating Daenerys's thoughts on the subject of wheels isn't really that helpful, but it does make the frustrated, wicked, central core of my being happy when I consider my responses to the many passive-aggressive power hoarding civil servants who have forgotten the meaning of the words "civil" and "servant" and who hold absolute power over my child's ability to do public school...

UPDATE---it's amazing, you know...just three hours after I posted this, I got word from the District that all has been unsnarled.  I have an answer, and it's a good one.  So, now I can have a more peaceful summer! 

But, moving on to bigger and better things.  We spent most of last week promoting, and then working NOLA Time Fest III.  Though I'd have preferred better turnout (HEY---Hilton Airport NOLA...did you forget to put "adequate parking for guests AND convention spaces" on your to-do list when you designed your ridiculously inadequate hotel parking?), the people that did manage to make it there, park and come in were delightful!

Our Dalek Extermination Booth this year was totally redesigned.  I knew we'd never be able to shoot nerf darts at the beautiful Dark Smalek, so I created a laser target booth where you shoot "laser" guns (um...infrared fire hose devices if you ask me, given the crazy amount of work I had to do to make them able to shoot the targets individually) at lighted targets and make the lights change color.

 

I learned that too many rules are onerous and make for confused people who do not donate nearly as much money as people who are simply handed guns and told to play at shooting targets.  This is a valuable lesson to learn!  

We raised money for http://www.teaam.org/ TEAAM Autism, and that will be our permanent focal point for fund-raising for the foreseeable future.  TEAAM has a camp for autistic kids and I am encouraged that they provide safe, fun summer camp activities for all shades of the spectrum, and for all ages.  It is a wonderful place, worthy of my time and effort.

My dad came to Time Fest again this year, and it was fantastic to have him there, driving Dark Smalek around, terrorizing two-year old children, and delighting everyone with the pretty Dalek.  We did some television promoting, which was fun, and hard, and all in all, everything came together nicely.

Dad, fixing targets behind Smalek

At "News with a Twist" at WGNO

On the Morning Show at WWL-TV in NOLA

When Costumes Come Together

<<<---This photo bears some explaining.  There are things about life with an autistic child that I tend to gloss over, but this moment in time was particularly fraught with the unnecessary drama and struggle that comes sometimes with my child:

• He was exhausted, having been woken up at 4:30 AM
• He had said goodbye to his beloved sister at the airport at 5:30 AM for her summer job in Colorado
• He had been driven three hours to NOLA
• He had been forced to put up with adults trying to get the booth set up when he really wanted food and quiet
• He was not able to go play pinball because...adults/booth/reeezons
• He had HAD it
• The wifi wasn't working, which wasn't my fault.... 

All of that resulted in his flat refusal to do anything anyone told him to until "the wifi was working again."

O_O

That is not acceptable behavior.  If you are my child, you don't say "I'm not doing it, and I'm not compromising until I have wifi" to me...that actually results in this grown-up going all Mommie Dearest on your ornery little ass.

So...through a series of parental control maneuvers, I managed to force him to smile and take this picture.

On a related note...

He never got wifi. 

He wasn't GOING to get wifi at this point, even if the hotel did manage to provide it.

Oh, the poor dear...  *massive eyeroll*

However, he did get lots of love and things to do and eventually he did settle down and watch the Sound of Music behind the TARDIS, and he was much more cooperative after that.  Still...it was harrowing for me, especially since his yelling and refusing and stomping and crying were in such a public forum where I needed to be cool, calm, happy-seeming, enthusiastic and seem all shit-togetherish....

And so we meander to the end of this blog post.

By the way... I seem to be cured of Hep C.  At least that's what the medical professionals are calling the SVR (sustained virological response) I have achieved at three months.  I'll believe it when I die from that parachuting accident at 80 like Dr. Regenstein promised me...  ;)

Toodles, all!