Tailor-Made

Tailor-made, I was.
Though all my clothes hung on me
And I was awkward as hell
Shoelaces usually tripped undone
And my hair ties came loose.

Tailor-made for being the victim
Geeky, younger, smaller, four-eyed,
Clumsy, studious, totally clueless
Socially awkward, unpopular
And best of all, face-blind.

I never knew who it was that poked me with pins
Stole my purse, squashed my lunch
Took my street clothes while in gym
Groped barely-developing breasts
Slammed me against the lockers.

Smeared clay on my chair like shit
Marked on my books, tore my assignments
Called me names, oh so many names
Or briefly pretended to befriend me
To make me the butt of a joke.

Not that I didn’t protest repeatedly
I reported the abuses properly
Told many official, protective people
Friends, family, teachers, administrators
But their responses were unilateral

“Boys will be boys,” said dad.
“You’re just being whiney,” said mom.
“If you can’t tell us who these people are,
that you ‘think’ are doing things to you,
then we can’t do anything,” said the officials.

Perhaps the real problem
Was not in what I said,
But that I was speaking up.
When I asserted myself
They redefined my reality.

Saying that what I perceived did not exist
That I was crazy, hallucinating, or on drugs
That I was just trying to attract attention
That I was making things up
When I wasn’t.

The perfect victim is someone
Who can’t identify the people that did things
Who tries to be good and please people
Who misses danger cues
Who is easy to silence.

The anger and frustration at being disbelieved
Turns into confusion and self-doubt
Maybe it’s just me
I must be wrong
Everyone says so.

Depression sinks in
I must be crazy
I keep perceiving this as reality
When everyone says it isn’t so
Isn’t that the logical conclusion?

You must trust people to help you
They are important people
They are the ones in charge
They know what’s best for you
They keep asserting you’re wrong.

When the reality is given to you by others
And they keep changing the story
It’s hard to keep your facts straight.
This is of course is only further proof
That you are crazy, and making things up.

Trust is earned, not demanded.
Funny how trust erodes
When reality is allowed to reassert itself
And I re-assert myself
Even though they re-assert:

I’m just acting out and making up stories.

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Trials and Tribulations

People whine about how hard it is to have an autistic child, or any kind of exceptional child. All too often there are terrible news reports about parents who have killed their handicapped or autistic children because they were such a horrid burden. Even more horrifying is when the press perspective or quotes are full of sympathy for the murderer because killing your own child is “understandable” because a person can’t help but be insanely stressed from dealing with the child’s abnormality. Excuse me; that should be the alleged murderers; trials haven’t happened yet for several of these cases.

Holy shit! Parenting is hard. Period. Yeah, there are bad days. Some days you feel like you’ll never get to eat your food at the proper temperature, or go potty or take a shower uninterrupted, or sleep through the night. Some days you feel like you’ll never finish the endless assessments, or learning more about the alphabet soup of ADHD, APD, ASD, TS, DSM, IEP, or attending special school meetings. Some days you feel like you’ll never get through the little chats with the police officer on your doorstep, or the hormonal teenager angst, or the getting homework done and turned in so the grades reflect a little of the smarts behind the scholastic ennui.

Amazingly, this is true regardless of what sorts of kids you end up with.

It’s true that there are some problems with autistic children that one doesn’t have as often with neurotypical children. There are also problems with NT children that one doesn’t often have with ASD children (when was the last time you read a blog by a parent sighing over how their autistic kid wanted to invite two dozen kids for a birthday party at Chuckie Cheez followed by a sleepover?) Different is not worse.

Aspie kid was a “runner” as a toddler. With my faceblindness I have great difficulty finding people in crowds; tracking down a small child that has bolted into the mobs of people at a mall would have been dangerously slow. Thankfully my other kid was four years older and could help me. I ended up having the tot in one of those child-harness & leash setups when we went shopping. People would give me dirty looks because I was a “horrid mommy who put their kid on a leash”. Frankly, I was a concerned mommy who wanted to keep her kid safe, because this child was fast, strong and inclined to dash off when intrigued by something.

There were also meltdowns, which being unaware of autism at the time, were to me simply “being too tired” and/or “having a tantrum”. So I ended up figuring out what the triggers usually were, and finding ways of circumventing those. We also learned how to calm down, and how to recognise when things were starting to get to be Too Much. I also learned the fine art of calmly saying, “Having a temper tantrum is not going to make me change my mind. When you calm down, then we will shop some more.” (I used a lot of If-Then and When-Then constructs when dealing with my toddlers; they could understand the binary constructs, and it helped them make sense of cause and effect.) Of course, passers-by would want to intervene and try to comfort/appease the child or chastise me for having a crying, floor-kicking kid on the grocery aisle floor. I also acquired the other fine art of smiling, nodding, and reassuring them, “It’ll be okay in a minute or two.”

This child also had/has distinct clothing and food preferences. Some relatives called this “picky”. I thought of it as merely having … preferences. I like my clothes or my food a certain way; why wouldn’t anyone else?

Sure everything was all about orcas when younger. Sure made gift-giving easy. Now it’s videogames (shocking, I know). Sure makes gift-giving easy. (Unlike dad, who has neither perseverations nor any particular hobbies; is that just so weird, or what?!)

Different is not worse. It’s just different. Rearing children is going to do major things to your daily life structure, your bank account, your living room furniture, your social life, and so on. That’s real life. Whining because your life isn’t going the way you thought it was going to, or like some kind of posed ideal family scenario from a greeting card, is simply whining.

Meanwhile, learn how to have fun with your children. Figure out how they learn, as unique individuals. Experience how they share their thoughts and feelings, as unique individuals. Take photographs, collect stories about funny family moments, and build up that group identity of “this is the sort of stuff that makes our family because we’re all part of it”.

DON’T EVER wait until “things get back to normal” or “when this is all over” to do anything. There is no “normal”. This is it. This is life. Fun is something you make, not something that happens to you. Families is who you are, not something you wish would be. Love each other, live it, enjoy it.

(And bake cookies, because cold milk and warm cookies with your fingerprints pressed into the tops are great family-glue.)

Baffles

They are playing a game. They are playing at not playing a game. If I show them I see they are, I shall break the rules and they will punish me. I must play their game, of not seeing I see the game.

~ R.D. Laing, Knots

Oh, here we go again. I assert negative opinions about bad conditions, and people who don't like that opinion will assert that the problem is neither the bad conditions nor the bad conduct found there, but rather that:

I'm crazy.

"Be happy in your delusion" says "ann" on Kevin's blogpost on the JRC.

Ad Hominem attacks are always popular for dismissing the validity of people's arguments. That particular blogpost is an exciting thread for fallacy-spotting; there's also the related Tu Quoque, the good ol' Straw Man argument, retreating to Appeal to Common Practice to defend the use of pain-aversives, and in the above example, Appeal to Ridicule. Let's make trading cards and collect 'em all! But I digress.

It's not surprising to see this kind of reaction from people who are working at or have worked at places like the JRC. Such blanket rejection of the content or validity of someone's opinions by declaring them to be delusional very much reflects the whole power paradigm of such places.

Ditto the assertions that no one can know what is appropriate for the students in those places, unless they've actually seen the students to appreciate that somehow those students are worse than any others elsewhere, and that they both need and deserve electroshock punishment.

There's a whole recursive sequence of irrational statements and assertions that create this kind of entrenched mindset. It is, unfortunately, found in a great many wretched places, most of which present themselves as being good, helpful places for troubled people, such as psychiatric institutions.

I'm in charge. I know what's good for you. I'm responsible. You don't know what's best for you. If you disagree then you don't know what's going on. I know how things really are. If you disagree then you don't know how things really are. You must be delusional. No one will take what you say seriously. You have to accept that what we tell you is really real. Until you do, you're really just crazy.

Crazy people deserve what is being done to them. That's why you're here, after all; you're crazy. You're not capable of leaving until you become a good, sane person. Sane means you believe what we tell you is real. Good means you accept that you are wrong and are crazy.

If you were okay you wouldn't be here. You're here because you're not okay. You should be thankful that we're doing this for you. You would understand why this is necessary if you weren't delusional. Denying your problems just shows how bad you are.

Don't you go being smart! I never said we'd let you go if you told us what we wanted to hear. You're delusional. You don’t understand what’s going on. You're dangerous when you get delusional. We have to manage your behaviour because you're incapable.

Quit confusing people with nonsense stories. You need to apologise for bothering them! We can't let you talk to them any more because you've chosen to misbehave.You're just asking for it; now you have to face the consequences of your actions. This is for your own good––

Et cetera, ad nauseum. It's the kind of thing that ties one's brain up into horrid tangles. Some chilling details of such situations are described by a survivor on Ballastexistenz blog.

Schools are sometimes like this, too, as are some workplaces. These others are the sorts of situations that more people can relate to personally. The names and the details vary, but not nearly enough. The whole rationale is much the same.

Substitute "bad" for "crazy" if the student or employee complains about the system.

Or, substitute "lying" if the student or employee complains about the people there.

The whole purpose of this is to keep the people manageable by convincing them that they can't understand what is really going on, and that their own personal realities cannot be valid. Keeping people confused by deluding them as to what they are really experiencing will preoccupy them, and keep them from getting uppity. Learned helplessness prevents them from taking effective action.

If nothing else, one very, very important thing I have learned over the years is that,
When something seems confusing, it means that we don't have the whole story, and that we need more information.

All these knots of dismissal, denial and denigration are disabling. They are designed to snare one in traps, recursively wandering about in a standstill, and getting nowhere. They are meant to stifle enquiry.

Pain is always an alert of danger to an organism, be the pain physical or mental. That horrid, familiar sensation of wading through confusion should not freeze us, but rather send out warning klaxons:

WARNING! Obfuscation and deception.

Time to gear up in your Personal Protection Equipment. Grab the shovels and waders and engage the Bullshitometers, because it's gonna get deep …

Overcoming Inertia and Moving Into Commitment (PART 1)

So much of what people have been blogging about lately is the necessity for major changes in what assumptions are made about the abilities and worth of people, all kinds of people, even those that have been considered to be of so little worth as to need removal from the gene pool or to not even rank the status of murder victim.

High moral ground is easy to take. It’s abstract, refers to grand sweeping generalities, and oddly, often doesn’t make a lot of impact on our daily lives. It’s easy to witness for big things against the big impersonal bureaucracies or in demonstration marches. But it’s far harder to protest the steady barrage of small, deadly insults from family, neighbors, coworkers, neighbors, fellow church or club members and other acquaintances.

Part of this lies in the fact that writing a letter to an editor, or posting on a blog, or doing a public presentation all give one the opportunity to plan ahead, to contemplate and improve wordings and rationales, and to deliver precise quantities of verbiage in a manner that is calculated to be clear and rational. You can define the problem and explain your position.

Instead, real life happens. And here we find ourselves in odd moments with unexpected opportunities to assert that NO, this is not right!

“Normal” injustices are easy to point out. “No, wait a minute – the end of the queue is behind me.” That Mr Next-Guy-In-Line here in front of me is in a wheelchair doesn’t matter; no one should be treated as a nonperson or noncustomer. (And then the interloper apologises to me for having cut in front of me, still ignoring the man ahead of me in line!)

The unusual injustices are hard to point out. These are the things where the current paradigm so permeates culture that most people can’t even see the injustices. When those are pointed out, most people do not even understand why they are problems. Pointing these injusticess out attracts dismissal. Expecting and then demanding fair treatment on someone’s part earns denial. Being the recipient of denial and dismissal, not even being taken seriously, gives one the horrid sensation of fighting fog.

Full-fledged denigration would almost be easier than denial. Anger (even excruciatingly polite righteousness) is easier to deliver. But being “on a mission” when people fluff off your responses as unimportant or silly or borderline crazy or merely picky is very, very difficult.

It’s hard to advocate when people don’t even understand what the hell you are talking about. You’re not starting from ground zero, you’re starting from the negative integers. You can’t even protest the problem until you can define it for someone and then convince them it exists!

Moments like that can paralyze one, especially when they happen unexpectedly, and you are left standing there gawping with profound indignation, but finding that the words just don’t come. There are no set phrases laid down by Dear Abby or Miss Manners to initiate the right social scripts for some things. To ask for apology or to demand equal, human treatment requires the transgressor to understand the problem in the first place.

Hey, I’m not crazy or contagious with some loathsome disease or going to harm your children or steal your wares. I’m just exhausted from working nine hours and dizzy from the smells of the cleaning solvents and perfumes and new merchandise and all the crazy flickery lighting and background noises, and being ticcy, and having auditory processing delays, and flinching because my hyperacussis makes me overly sensitive to that sudden screech, and wearing my sunglasses inside because a migraine is creeping up on me, and HEL-LO Mr Cashier you don’t need to turn your back on me so you don’t have to acknowledge my presence and wait upon me, and Mommy you don’t need to drag your kids away, and Ms Assistant Manager don’t bother asking me if I want to sit down by the pharmacy so someone can call a responsible party to come fetch me. I’m just a harmless shopper who needs to get a few groceries and go home and make dinner for the family and then get some rest! I’m an otherwise Okay Person and I belong here!

Being able to advocate in such situations can be hard at first. It’s certainly not a lack of desire. It’s not necessarily a lack of ability. Given enough moments alone, some useful scripts can be formulated and practiced, to have on hand for those brain-dead moments. The hard part is overcoming the decades of inertia that have been trained into one. Be a good little victim. Don’t inconvenience people. It’s not important. Who the hell are you to complain?

Personal change is not always easy. It’s not usually the cognitive impetus that is difficult; sometimes it’s not even the emotional impetus. It’s the inertia that holds us back, that prevents us from speaking up when something wrong is happening, or from speaking out and initiating changes. The internal change cannot be merely called forth just by wanting it.

On the cusp of genesis is the threshold of inertia. You must gather sufficient momentum to force, to hurtle yourself through the portal. Up to that very grain of time is an oozing molasses of eternity that impedes the effort, although the mind is halfway on the other side. But mere movement is not enough, for mere movement is not progress. To overcome the inertia and move into change, you need sufficient commitment. Not just commitment to an idea, although that is first necessary, but commitment of the heart towards a goal, a purpose for something.

Once that commitment is invested, the portal is not just a change from one room to the next, but a threshold that lets you fall upwards with a single large, fateful step …

“HERE WE GO!”

Personal change is dangerous, not for the person taking the step, but for everyone else. The person who makes that transition is pushing at the very assumptions of the common paradigm, because any major changes you make in yourself are going to create ripples that affect others.

It’s this ripple effect that creates some of the inertia – you have to want to step forward, not just for yourself, but also at risk of changing the way others relate to you.

What helps create some of the crystallization of will is the realization that implementing change not only creates ripples, but also creates opportunities. “Nothing succeeds like success”, and crossing that threshold is a success. It is not only a moment of empowerment, but also of genesis. It initiates a hub and lightning rod for other changes; you acquire some of the momentum of the universe, and previously unimagined and oft-unexpected things are now drawn to you; new webs of connectivity sprout and catch onto the new hub, and you find yourself meeting people and getting aid, encouragement and inspiration from unexpected sources. This liberation and delight also means that you are now an agent of change yourself, and can in turn connect with and help others …

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