Thursday, October 27, 2011

A 'Come to Jesus Moment': When Hope and Tenacity isn't Enough

This was going to be a somewhat coherent rant, but the fucking computer just froze up again and, as is a very common fucking theme in my life - I have to start all over and do the work again. I have to spend 5 times as much fucking time getting something done as another person would - and I'm getting pretty God-damned sick of missing the breaks.

Yeah - so you don't like the 'f' word. Tough. It was the only way I could start this whole miserable fucking process all over again after having gotten through some pretty heavy shit and I was maybe a paragraph or two away from publishing.

And now I have to bother with some stupid lame-ass segue that connects this with the original beginning to the piece that was already plenty on fire.

God DAMN it - why does life have to CONFIRM your worries and anxieties? Huh? I see the very vast majority of the population getting along just fine (at least in my little corner of the world), and yeah - I'm getting pretty fucking jealous of being a nice guy, with all the right priorities, and yes, even though I consider myself unspeakably blessed to do the work that I do with the most wonderful "severe/multi-disabled" kids in the world - why does EVERY FUCKING YIN have to have a yang!?

I had started off before about how this post/blog/hub/article was gonna be a "come to Jesus" sort of opening up about life and worry and will I make it or won't I and shit. Yeah - and I turn 40 in less that 2 months!

That doesn't even bother me - it's not like it's printed on your head or anything. But I do "look like" a grown up and have typical "grown up expectations" thrust upon me.

And guess what? I cannot handle them! No - this isn't one of those pieces where the audience can go "I hear ya, brother" - 'cause trust me, you don't. Unless you're still tapping light switches 24 or 32 or 48 times (40 is 5*8, which added, makes 13 - can't touch it!), and unless you're forgetting what you're going to the kitchen/office/closet to get or do - ON YOUR WAY TO SAID destination!!! - and unless you have a documented disability which, for you, manifests in one of its ways by making you unable to hear and understand anything but the exact words spoken - even if that has been tempered and retaught by some VERY PAINFUL and embarrassing "life lessons" (fuck that - if lessons and learning hurt that much - then stop the train or give me a razor-edged object RIGHT NOW so I can say "See ya!").

I was gonna go into specifics - but now I guess I'd better not. Suffice is to say that unspoken expectations are about the most unfuckingfair thing in the world. Yeah - most of you NTs can figure "life" out.

But guess what? I can't! And neither can many with neuro-cognitive disabilities such as Nonverbal Learning Disability and any one or combo of myriad other language/processing/cognitive deficits.

But yet - of all the things that make this even more noticeable and painful and destructive is constant and gratuitous change! People think that, after they've "given you the chance" to improve or learn, that a CHANNNNNNNGE is in order! HA! Some chance! Maybe you NT's can "pick it up" in 2-3 weeks and function at a level that "verifies" that you're worthy of the compensation you receive.

Let me tell you something. I would be the first one to get the hell out of the classroom if I thought I was doing these beautiful kids - these little kisses sent down from God - any harm. But I'm not and I don't. I love them. I am not afraid to show it. I am not afraid to get on the ground and play with 'em and maybe even once in awhile sneak in some learnin' and social skills.

I'm not afraid of losing my dignity. Please. Children do more for my self-esteem, happiness, fortitude and patience than ANY freakin' "grown up". Yes - I resent the group of which I am a member! How's that for self-loathing, eh?

But then, denial ain't just a river, folks. I can say that it matters not how many times I have orbitted the sun aboard this blue/green ball called earth. 'Cause that's all age is to me. I know plenty of young one's with more instinctive goodness than I do among "responsible adults", you can believe the HELL out of that!

All most kids need (up to say 11 or 12 for "typical" - and way past legal-childhood for the angels I am BLESSED to serve) is your SINCERE attention, your honest-to-God best effort EVERY day, and to know that you care, are listening, and would jump in front of a bus for 'em. And I can say that about every single kid I work with. I'd take a bullet right between the eyes to protect any one of these...there is no word I can find that bespeaks the tears streaming down my cheeks this minute as I think about how beautiful they are.

Hey - I have more to offer them than my best intentions and my heart and love and all that - even though THAT's the stuff that really matters.

But, see - it's no accident I ended up working in this field. I, too, suffer - and that is most assuredly the most understated word I can use, from a very frustrating disability. It means I need everything explained to me. Sometimes more than once.

It means that I am a literal genius in some intellectual/cognitive regions, and a completely hopeless dumbass in others! Children don't give a shit. They take you as you are. They trust you. THEY BELIEVE YOU!

And believe THIS: I would never, ever, ever, ever, ever betray that. These guys deserve - and the get - my very very very very very very very very very very very very best every single day - because they're worth it - and they return the care and love in ways that have me smiling all weekend when I'm not writing pieces such as this...and yet - even once or twice during this session, too! So - kids get the honest me. The full me. All of me. And what I get back have no idea what it is until a student - ON A MONDAY! (blech), is pulling up on her bus, sees you waiting for her, and starts to bounce and yell and giggle (all with her hand in her mouth and her beautiful eyes squinting right at you), and greets you with a sincerity and unrestrained giddiness that could only come from an angel - a drooling, laughing, bouncing, runny-nosed angel, who GRABS onto your hand and pulls you toward her classroom expecting YOU to play with her. Oh for Christ's sake - the stupid water works are starting again. Love love love love love love you, Meaghan!!!!!!!

I wish "we" "responsible adults" could be so honest, so earnest, so unselfish with our love and enthusiasm and willingness to, like, SPLASH sunshine all over every room these kids enter. Look - I know I'm lucky. I know for sure that I am damned lucky. This is the best job in the world.

And it is also one of the most frustrating. Maybe not the job. No - it's not the job. It's that very few people seem to "GET" that I have a disability too. A monster of one. But I try, and I tell the truth - like our kids do - because that's what they deserve from me. But sometimes, I tell you, my peers and colleagues know how the hell to beat me down to a sobbing piece of mess. And yet - almost every adult in my life gets the literal and militant honesty of which I am pretty damned proud, as a matter of fact.

Okay, sometimes the reasons aren't, like, dripping with honor and virtue. Sometimes it's a matter of self-preservation, and avoidance of confusion, I'm pretty honest with everyone else in my life, too. I would say absolutely honest - but there is one person to whom I tell daily lies - because he is a nag, a critical brute, and even as he has mellowed over the years and I have gained some much needed contextual perspective (very painful and frustrating though it was and continues to be) - Dad does not always get the truth from me.

Because I need to relieve the pressure. It's no coincidence that I am taking an anxiety med among my pharmachological cocktail! I say whatever it is that provides the quickest route to the end of the discussion that is almost always an interrogation. Even on the simplest, daily, most ordinary stuff.

But guess what - it is in the "simple", daily, "ordinary" stuff that NVLD beats the shit out of me every day.

He doesn't get that.

I'm tired of explaining.

Especially to the guy who, yes, this is some deep-seated shit - I feel should have had me on a therapeutic and successful track by virtue of less selfish parenting as I was growing up.

Yeah yeah - whine and huff all you want. You NTs think everything works in life for everybody else the way it works for you. Before you get on the "parents are God" pedestal, I invite you to TRY to read "A Child Called 'It'". I've been to Wal-mart/B&N/Borders/Waldenbooks/the Harvard Bookstore many times - and have picked it up on at least half a dozen occasions. Every single time - I have to put it down before I tear the thing to shreds and wish the author's mother alive so that I could....OOooooo.....I can't bring myself to describe the humiliation and torture I'd wish to subject her to"....

Anyway - my point is that if you're already offended because I happen to have parents that weren't so stellar, and I have the (gasp!) audacity to be so ungrateful and spoiled as to speak the truth - then shut off your computer, go sit in front of Dr. Phil or Rush Limbaugh with your American Beer and bag of Lays and bask in your self-righteous glory. I've got nuthin' for ya - and no need of you.

My nerves are friztling to the thinnest of threads. I don't know if I will ever master the stuff that so so so many "regulah people" take for friggin' granted.

I don't know if it'll have disastrous consequences for me - or a continuation of the frustration that has slowly but surely taken a little bit of me from me every day of my life.

I NEED to hear that I'm doing okay. I NEED YOU TO TELL ME WHAT YOU WANT - Now and tomorrow and tomorrow and tomorrow. Sorry - that's the cold hard truth. And it ain't HALF the chore it is as caring for the bathroom needs of one child on one day.

Yes - it's a hassle. I'm sure it's a hassle to wait for that lady in the walker to cross the cross-walk even as "her" light is "don't walk" again and you're light is green and you've got places to go damn it.

But you DAMNED well better wait for her to cross if you want to be rappin' with God after your body expires. You BETTER tolerate the "inconvenience" of waiting. Ya think her life is peaches and creme, sport? Yeah - think about THAT and then get off your horn and shut the fuck up.

Well - I'm saying that to the adults in my life - at home, at work, on the street, in the courthouse, in the hospital, at the bank, at the auto-insurance office, at the Masshealth office - I'm telling you ALL that I am doing the very best I can.

So get off your horn, and say and/or do something to help.

Or please. Please. Just shut the fuck up.

Friday, June 10, 2011

Can't quiet the jitters

Jitters is not exactly the right word, but *ugh* how it's so ridiculously easy to overuse the term "anxiety".

So, what am I "jittery" about? Not sure. By that, I mean that I've always been nervous and worried. But it's always been a cognitive/"heady" thing. Now my body is getting into it and I really resent *that*!

The best way I can put it, in a stream-of-consciousness way that'll keep me writing and get me past the friggin' compulsion to drag on for worry of not adequately "crafting" a transition from intro to "meat", is to say that I'm beginning to feel like the temporal walls are closing in on me.

I feel like I've lived most of my life thus far like I've gone about the task of writing - I dwell and dwell and dwell, procrastinating like hell on getting on to the next phase - the next task, the next paragraph - hell - the next *SENTENCE*! - and to some finish line and the inseparably linked unknown new starting line.

That's the thing. It's the dragging on because I don't know what the frustrating fuck is after the end of the comfort zone I've reached, and this zone reached just like all the previous and likely all those to come - kicking and screaming and dragging and waiting!

Part of it is the very brain-frame with which I have been so unblessed, and which inspires the name of this blog: a literalness that ALWAYS confounds a smooth comprehension of my environment, and thus, over time and unbearable stress and resentment, an acquired apprehension that I "get" anything.

I'm always looking for reassurance and confirmation. It's a pretty God-damned unfunny irony that this truly manifested itself clinically - and very early in my life (see, I'm not a slow learner - I learned fear pretty damned quickly!). Yes - this *compulsion* to confirm and check and prove to my satisfaction (my mind's ever-threatening panic puts the bureaucratic "in triplicate" stereotype to shame!) did eventually acquire a name, but OCD sounds too simple. And it is. But it is apt in describing part of my problem.

But then, what the hell! It's a pretty fucking rational response to my constant and/or chronic confusion to LEARN this doubtfulness!

I'm not stupid. And thus, I'm constantly on edge.

God damn it, this sucks.

Sunday, April 3, 2011

As sad and demoralizing a fact as it is, it has been shown time (and time and time) and again, that police are NOT always to be trusted to protect and to serve. I state here, as a pre-emptive rebuttal to those who would pretend not to know the obvious, that this essay and example does not apply to all law enforcement personnel. My point is that it should not apply to any - that every last and single officer should be expected to respect the rights of the citizens they serve, and subvert their own needs and impulses while on the clock.

Unfortunately, as the case below tragically and more than adequately demonstrates, it is all too easy to get swept up in the power trip under the guise of being "strong and brave and assertive" or whatever, undoubtedly a product of the "don't take any shit" philosophy ground into the heads, hearts, and backs of absolutely all police academy cadets.

What follows is an example of a tragedy, an abuse of power, and a subversion of justice that didn't have to - and should not have happened. We the citizenry have a civic - a moral - obligation to see that this travesty be reversed, and that such a disgusting abuse of power and taking advantage of the disabled never, ever happens again.


I'm going to apologize in advance for the intense tone this response is likely to take, as I can already feel my body responding to my anger about this.

I'm also going to please, please ask anyone who is so inclined to counsel me to "see the big picture" or "don't get hung up on" this or that, please don't bother. I've spent more hours pondering, worrying about, seething, reading, pacing and writing about just this type of issue than most (not all) bloggers, citizens or even professional journalists have in their entire careers and/or online expositional lives.

A Virginia teenager, Reginald "Neli" Latson, 19, who is autistic, was sitting on the steps of his local library when onlookers/residents decided that this young black male wearing a hoodie looked or was acting suspiciously. The police were notified and soon arrived.

The responding officer, one deputy Thomas Calverley, 56, a school resource officer (seriously?), who had been "informed" that Latson might have a gun, approached him innocently and casually enough with a "What's up, man?". Good. Not bad - be calm and establish communication without being aggressive or accusatory.

But then, upon asking his name, Latson refused to give it. Now, I'm thinking that an autistic person, already compromised in the realms of all things social and subtextual, has done a remarkable job to acquire the skill and confidence to use it to not answer a stranger's personal question.

Yeah, yeah - but he was a cop. Says who? His uniform? You know how many crooked operations exist that can supply anyone with an authentic looking uniform of their choice with a click of a mouse (and a credit card number, of course)? Look, I'm not saying that the cop should have known that he was dealing with a kid with Asperger's, but you'd think that a public servant in possession of a firearm and the authority to use it would be required to be alert to the cognitive and emotional states of those he comes in contact with - *ESPECIALLY* in a low-intensity, one on one interaction such as this was at first.

But, even if the officer acted "with an abundance of caution" (this author's characterization), in arresting Latson, he still screwed up in not announcing that possibility beforehand - for ANY citizen, compromised or not.

No, it is not a happy or righteous thing that this teen responded with physical aggression. But, it is understandable, and, upon the inevitable gathering of facts and determining the entire nature of the situation, it would have been appropriate (frankly, I say mandated by numerous statutes protecting the disabled) to release him from custody without charge.

That's right. In an ideally compassionate and just world, the officer would have seen and ackowledged how this got out of control, and how he as the professional was possessed (having had 33 years on the job!) of the experience and the authority to have controlled this situation without incident. That he didn't is either a gross and frightening example of police incompetence, or, I allege, a manifestation of the all-too-common attitude that a responding officer owes no answer to anyone and is justified in taking whatever action he feels like to "secure the scene".
This officer behaved recklessly - and he refused to accept responsibility for his part in excalating the anxiety and, yes, aggression of a disabled teenager who, I'll remind you, was guilty of no crime when the officer showed up and caused one to happen.

It is an absolute disgrace. It is disgusting and mean and arrogant. It smacks of the self-righteous entitlement to power, authority and access to material wealth and position - not to mention the sadistic but never confessed militant joy of yesteryears' slave owners indulging their sick and inapt superiority at the whipping post.

I'd bet every material thing I own (okay, not an impressive bet, but symbolic) that this cop could have but chose NOT to avert the escalation that occured.

Why? How could I say such a thing. BECAUSE I'VE SEEN AND SUFFERED SUCH A THING FIRST HAND! No no - not to the point of assault, as I still haven't learned to stick up for myself beyond the editorial pulpit.

When the hell are the police academies gonna stop enculturating
future cops to suspect everybody, treat everyone like a lying criminal, always tow the (blue) line, and never ever betray your partner, even when s/he is behaving like a lying criminal?!

The main lesson and goal is to foster an US versus THEM attitude, and to always justify taking the most aggressive action possible.

I reiterate - I don't even wanna hear the "don'tcha think you're exaggerating?" - because NO, I am not exaggerating one bit.

This cop could very well have offered a reason for his inquiry. He could have - oh my GOD and perish the thought! - tried to establish a conversation and even the most cursory of a relationship or rapport.

Remember - HE'S supposed to be the professional! Surely if I, as a
paraprofessional (that is, one who works UNDER a classroom teacher), can be required (and gladly so!) to know THE most rudimentary de-escalation and crisis intervention and prevention skills, a guy toting around a firearm should have to demonstrate at LEAST that level of interpersonal and "first do no harm" skill.

Ha! That's something I think should be a creed that goes WELL outside medicine. 'Cause, see, a scalpel or a stethoscope cannot do the harm that a gun (or the powers of arrest) can do!

But the cop is exempt from such ethical standards and scrutiny. He's given a pass because society says the ones who do the brave and macho thing are heroes always.

'Cause that's just the way it is.

This cop could have prevented this. He didn't want to. He just wanted to
assert his power so that this autistic kid (who even I know will NEVER respond positively to "do it because I said so!" tactic) would VERY PREDICTABLY respond in a volatile and irrational (to NTs) way.

Oh, and another thing. The cop didn't find a gun, right? He responded to the scene because people thought he seemed suspicious. Hmmm.....I wonder what it was on which they came to this conclusion? No - I don't wonder at all. They saw this guy with some atypical mannerisms, and perhaps vocalizations and unusual gazing behavior and they thought - oh, he seems like a shifty one!

Ten and a half years!? Did the cop die or something? Permanent disability? Ha! Justice is hardly ever so poetic! There are child rapists who haven't been sentenced like that! Ah, but I guess having your every which way with an innocent and tragically all too powerless child and ruining his/her life isn't as bad pissing off an anything-but-innocent and tragically all too powerful bully cop and giving his gargantuan ego a good hard smack or two.

The kid dared to express his disobedience with a physical attack. No, not a
safe thing for society and not something I "condone" exactly. But, shit - I am just BETTING that I could have handled that situation without a mark on me!

I did for six years as a 1:1 aide to an autistic kid. Then the oh-so-wise
powers that be decided we needed "a break from each other", and reassigned me.

The second day this student had his new aide, he hit her in the face and was expelled.

Six years without a mark. Two days and she gets whacked. Something tells me she decided to take the arrogant "be tough" approach that I knew - KNEW - would not only be counterproductive, but unjustified, unethical, and ultimately tragically provocative.

No - sorry - don't. Do NOT tell me that a cop's life is on the line.
PUH-!@#%ing-LEEZE! First - that's the job they accept. Yes, and don't tell me that I'm disrespecting the brave and the noble. I know a couple of good cops - and respect the hell out of them - because they also happen to be pretty freakin' decent human beings.

But the intersection is far too rare. It's a very strong and special person who can assert and live his inner decency and integrity in a profession where those are NOT priorities. Stay alive at all costs is the motto. Live to eat another donut.

Go home to your kids? Fine - that's justified. But holy hell - can you imagine being the kid of somebody who habitually thinks the worst of people? No damned thank you.

And what is this person gonna be like after 126 months in jail? Older.

That's it. He'll still be on the spectrum. He'll still have no @#$@%ing clue about the subtext and "common sense" rules that are unjustly imposed on even the unaware. He'll still need the respect that IS the defining characteristic of any appropriate empathy that is required to interact with him effectively and humanely.

And a cop has no right to fall short of that.

You heard me. He ain't a custodian. He's not a fry cook. He's not a Wall
Street exec. You wield a gun, a scalpel, a gavel or a classroom, you have the MORAL DUTY to put others first!

That goes for parents too - but don't even get me started there.

Nope - when this person leaves prison sometime in the autumn of 2021 (if he
lives that long inside!), he'll have acquired none of the skills, advocacy,
resources or legislative reform that is needed to live successfully and fairly in America.

He'll be 10 years older. And he'll still be going to the library and waiting outside until it opens.

And this cop will likely still be on the beat. And I doubt very much that 10 years will have wisened him any.

Police officers have the power, authority and position to effect absolutely positive change, public safety, and have a precious opportunity to be a positive, honest, service-oriented and welcome members of the communities they serve. Most of them do this job admirably most of the time.

But sometimes, sometimes, they fall way - way short. Until we are in a place and time where this public trust is honored and met MUCH more seriously, and almost without exception, we cannot blindly trust the police to protect and to serve, to do the job they swore to do.

Because that's not the way it is.