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.