hive mind

fluffy will be 11 in a month. i’m glad to be done with 10. 10 has been a hard year in our house. It started a few months before 10 arrived. it’s now a month before 10 leaves. who knows what 11 will bring–maybe more? maybe less? maybe the same?

it was just a year ago that we tried medication for the first time. the guanfacine knocked him out like a sleeping pill. no good. we tossed that out. the 12.5 mg of zoloft did nothing. at 25 mg, it seemed to help. but did it? hard to say. it seemed to help with a host of things that stem from the anxiety. at 37.5 mg, it was even cloudier. some days, it seemed no different than 25 mg; other days, it seemed to make him more agitated. so we dropped back to 25 mg. but then months past and we honestly couldn’t say that the 25 was doing anything, and if that’s the case, why give it at all?  some might say, you ought to have gone even higher, tried 50 mg, 75. 100. maybe. maybe. the whole thing makes me feel sick inside, to tell you the truth. 

 so. nothing since september when we began working with a new (ostensibly) amazing doctor. weeks and weeks of intake. i won’t go into what happened at the end of that ordeal. we never even got to the medication trial so, thankfully, fluffy was spared that roller-coaster. but the boy needs something. that’s clear. maybe that’s what this whole year has been about, making it crystal clear to us, his parents, that, despite all the very real concerns about psycho-pharmaceuticals, too much of the time, fluffy operates in a fucking hailstorm, poor guy. from where i sit, it looks like a white-out in there, in that beautiful head of his. he needs some help, some all-weather gear, some special goggles. some damn thing.

yesterday was a new day, a new month, a new year. it was also a hard day in this house. i can’t say we dealt with it perfectly. the aggression. it’s hard. in a multitude of ways. i can see that fluffy’s using restraint. he is. but simply put, i don’t like being poked and hit, punched and yelled at. i become weary. i know it’s awful for fluffy, too.

i did a bunch of clearing out. the tree came down. the decorations put away. it was a fine holiday but i’m all done it, ready for a new beginning. i found the thanksgiving turkey wishbone behind the dish drainer and after dinner, fluffy and i each made a wish.just before we gave it a yank, fluffy said, shall we tell our wishes?

sure, i said.

i got the bigger piece. i wanted him to get it, to get the bigger side and his wish.

maybe we both wished for the same thing, i said.

what did you wish for? he asked.

that the new doctor will find a medicine that really helps you feel more in balance, i said.

i wished for a solution to the hitting problem, he said.

we looked at each other. he pointed first to his head, then to mine and beautiful grin appeared. “hive mind, mom!”

 

Poem on the cusp of a new year

Poem on the cusp of the new year

What would it feel like

to zero in on the scary feelings,

the ones I tell my son are okay to have because they’re a part of life–

the sadness, worry,

fear, disappointment,

anger, rage,

embarrassment, shame?

When I have them, my shoulders brace and harden,

concave my chest,

hollowing it out to a fragile vessel,

a bowl made of porcelain

designed to keep those feelings out.

I strain to make things a particular way,

my body stuck with feelings my mind says are unsafe to have.

What would it feel like

to let go of thought

and lean into those feelings,

feel them in my body,

feel them burn themselves up?

to fill with the ash of that fire,

fill with those embers until they turn milky grey and papery thin?

I want to let go of the fight.

I want to drag all the things that taunt and terrify,

that badger and belittle,

and throw them into a mounting pile

 in the middle of fallow field

under a dark night sky,

strike a match and set it ablaze.

A bonfire,

a solstice,

a mark of the returning sun.

I want it to burn and burn,

to climb, crackle and spit,

pour smoke into the native trees.

I want to stand by the heat of it

feel it cook my skin,

feel the flickers of yellow and orange,

smell the dead leaves,

the acrid sting of something chemical,

intoxicating.

I want to be primal and raw,

howl with the roar of the flames,

howl and laugh,

dance and circle,

calling out words and sounds,

speaking in tongues,

emptying out,

unaware, unconcerned, unencumbered

by clothes, thoughts, skin, desire, expectation.

I want time to pass in a slippery way,

shedding its ghostly skin like a snake

so I wake

to the weak light of morning

illuminating a great circle of

cool, black earth.

Every six months…

Every six months or so, I’ll stop by and say hello. I hear that’s the best way to grow readership.

Honestly? I haven’t been here because I couldn’t imagine what I would say. I had no wisdom to share. Zero. I’d look in the wisdom basket and it was empty, time and time again. Same with the wisdom cup, bowl, bag, drawer. All empty.

M

T

Fluffy is 10 years, 8 months.

I am 51, 359 days.

We both still have our struggles. Our good days. Our not so good days.

I’ve been reluctant to write about it. Fluffy is at the age where I feel it’s overstepping to write about his challenging times. (Frankly, Fluffy’s at the age where I feel it’s time to stop calling him Fluffy. Some people believe that moment arrived seconds after I first called him such a thing. Fluffy. What kind of a nickname is that for a kid?)

His challenges are his business. But they’re also very often connected to my challenges. And so the question I haven’t been able to answer is, How do I write about my challenges with his challenges without violating his privacy?

I haven’t been able to figure out that.

So, I talk to Dave.

I talk to a friend.

I talk to the air. The air is pretty helpful, actually. Helps me breathe while I’m trying to figure shit out.

Why write today, then. Hmm?

I’m not sure. It’s nothing earth-shattering. I mean, I have emerged on the other side of a rough patch–the last month or so in particular–with something, if not exactly wisdom. I know when I’ve come to a place like this by the state of my office. When I moved the piles and stacks from my desk to the floor, I know I’m shifting. I keep thinking of that scene in Apollo 13 when NASA has to figure out how to keep the astronauts alive when damage to their ship threatens their oxygen supply. The guys on the ground race into a room and dump a load of stuff on the table–everything the astronauts have up to work with up in space–and scramble against the clock to build something that will fix the problem before they all suffocate, a way, as I recall, to construct a thing that will connect a round to a square. Or the other way around.

I’ve got all my stuff dumped out on the table, in real life and inside my head. It’s all out there. I’m not making any snap judgments, just spreading it all out to see what might connect a round thing to a square hole or a square thing to a round hole.

Looking for connections.

I’ll let you know if I make any progress.

Carry on.

beyondo me?

i’ve been doing mondo beyondo, ‘an online class for dreaming BIG,’ by the amazingly dynamic and talented Andrea Scher and Jen Lemen, for the last four weeks. i did it last year, in january. it moved some things around in me but it didn’t propel me straight into the center of a dream life. that’s okay. other things happened. and life isn’t always neat like the perfect bow but more like my sneakers that come untied over and over or form a lopsided half-bow, one string hanging off to the side or a tough knot that breaks my nails when i try to undo it.

i’ve been reading the daily lessons, doing the assignments, practicing the art of who knows and what ifs and why nots because the art of living in possibility is like anything else, a practice, a muscle that needs consistent strengthening.

this morning’s entry told the story of a jen’s dad, a man who never stopped believing in his dreams even though the outer world brought disappointment, unexpected delays and obstruction. he was creatively resilient and optimistic, connected to his imagination, his ever-percolating mind. i loved the image of him she painted, in the back yard with a cigarette, scribbling ideas and numbers on napkins. it was romantic and inspiring like all the lessons in Mondo Beyondo. inspiring and yet, a tiny bit worrisome.

see, even as i log on and read, do the exercises and assignments, dare to write my mondo beyondo list, even as i absolutely believe in the power of dreaming, in unearthing and nurturing our deepest desires that may or may not make sense or seem out of reach, i’ve been wondering lately if the mondo beyondo is not for me but for others, others who have something i lost or something i lack, something i never had the courage to reach out and hold and so therefore missed out on. i don’t walk around with this beating me down but rather notice it from time to time like a mist in the corner of my eye, obscuring the distant view.

a few weeks ago, i became aware of a desire to draw. and i listened.

i found myself at the computer, messing around with photoshop, a program i barely know. i was using my mouse as a pen. it was clunky and odd being but also interesting and risk-free. i could cut and paste and undo and erase, turn everything black, green, pink, back to white, scrap the whole thing, start again. i’ve drawn here and there over the years, little spasms of lines and color and then spent years and years not lifting pencil to paper. over the past few days, i’ve done a handful of drawings and just yesterday, i found myself fantasizing about turning the guest room into a studio for making art.

it doesn’t necessarily make sense but the image of being under the skylight drawing and painting in my bare feet delights me so i’m letting it simmer, seeing where it takes me.

this morning, i sent a few of the drawings to my sister, a kindred spirit. we’ve long talked about our unexpressed selves, our creative urgings and creative stuckness, our worries and perplexions about how to bring more of our authentic selves to the world. we’ve gone over the whys, the places where we weren’t given what we needed as kids or teenagers or adults, the messages we took in about what was possible or practical, the ways we’ve walked inside the confines of these limiting views. i, for one, know this has absolutely informed the urgency i feel about growing a feeling of competence, able-ness, in fluffy. if there’s one thing i want to do in this life, it’s to communicate to him through my words and day to day life, that anything is possible. the only way to do that is to be engage in the lively exercise of learning that myself, no matter my age or my training.

my sister wrote back and said, listen, this looks like fabric design to me. let’s start a business! together! somehow! let’s do it!

i wrote back, YES!

we don’t know what’s next or how but we are committed to saying Yes and seeing where it takes us. i’m not sure how it fits in with writing or making a living and i certainly don’t know or want to think about how practical it is. i just want to follow this impulse and see where it takes me.

maybe mondo beyondo is not beyondo me?

self-portrait; april, 2011

Napoleon Bone-a-pants

the boy has his hands down his pants at every opportunity. it’s very normal, i’m sure. he’s tween now, isn’t he? at ten? i’d probably be doing the same if i were him. it feels good. it’s always there. easy access, one quick movement of the hands, plunge, there it is, the fiddle toy that he’s never without! his permanent sensory snack!

he’s always been like this but it doesn’t really fly anymore. it’s not going to win him points in the shark pit of his peer group or frankly, anywhere. we’re working on appropriate while trying to convey healthy attitudes towards ones body, towards pleasure. i don’t know how many times we’ve said, yes! that feels good. it’s meant to. it’s part of the plan. but it’s private. you simply cannot do it in public places or in front of other people at home, even mommy and daddy.  okay, he says, and sticks his hands down his pants.

dave calls him napoleon bone-a-pants. that’s become his signal to fluffy, a reminder, hey buddy, they’re down there again. i can’t seem to remember that. i usually just squawk, hands!

we’re also working on improving his aim. in the bathroom. the credit system works pretty well around here. fluffy earns points for various things. incentive. he spends those points on privileges and treats. most of it goes to computer time. this may sounds ridiculous but for the last week, he’s been getting 2 points for every pee that goes entirely into the toilet. for this to happen, i coached, he must watch the pee the whole time. from first spurt to last drop. since he’s in there on his own, the points are awarded on the honor system. we can do this. fluffy, though skilled in the art of debate, is not a liar.

this morning he came trudging in for his morning pee. i was in the bathroom already, irrigating my sinuses with dave’s neti pot. (as an aside, ought i to get my own neti pot? is this the sort of thing partners share?) i’ve been trying to cure my sinus infection for the last 10 days. (another aside: we’re an open-bathroom-door-walk-around-in-the-nude-household. the only time the bathroom door gets closed is during more serious bathroom business.) as i rinsed out the sink, fluffy began to pee. i watched out of the corner of my eye. he was looking straight down at it. you go, buddy, i was thinking. he continued. quite a stream. impressive. we’re all big pee-ers here. he kept watching. it was looking like a solid 2-pointer. then he leaned, looked to the side. the stream leaned, edged toward the back rim, closer, closer, and then it went over the top, through those little toilet seat holder points, onto the back ledge and onto the floor.

honey! the pee! you need to watch it the whole time!

i know. okay. okay, mom.

sweetheart–

okay okay mom!

may i ask? why don’t you use your hands?  i’m not an expert, but i don’t think there is a boy around who doesn’t need a hand to direct it.

okay. okay, mom!

i don’t mean to nag. i’m really curious. why don’t you hold it?

(at this point, dave came shuffling in wearing his bathrobe. i was nude. fluffy had his pants down.)

it is curious, dave said. it’s the only time of the day you’re not holding it.

i don’t know, fluffy said. then that smile appeared and spread across his whole face like a sunrise and he added, i guess i just don’t think it’s appropriate.

let’s see what comes up…

this is when it gets hard. when a few days go by and my initial bursts of energy begin to wane. i’ll reconnect to the blog! i’ll write every day! i’ll…i’ll…uh, wait, wha’?

so. i’m logging on to combat the inertia. to dash something off. even though i don’t have time. even though i have nothing clear in mind to say. hmm, let’s see what comes up. oh, here’s something:

1. a few hours ago i nearly had a fist fight with a mean mommy at vision therapy. she was rude to fluffy and rude to me. i opened my big mouth and said, what’s the matter with you? why are you mad at me? what did i do to you? i wished i had made a crazy gesture inside the private room of my mind and glued my lips shut in the very public waiting room of the real world. there was another mommy in the waiting room and she chimed in. it’s true! she said, jumping to my defense. i’ve been watching the whole thing and you’re taking your anger out on her for no reason! for a second, i felt pleased. vindicated. ha! take that! words were thrown around like a cafeteria food fight but very quickly i felt icky. i’m a confronter by nature but i don’t like it. i like when blue birds are flitting about and everyone is drawing smily faces and swapping recipes. i don’t know what this woman’s story is, was, may be. i willed myself to stop and seconds later the eye doctor called us in and saved the day.

2. she gave us the results of fluffy’s vision re-test and tadaa! after 6 months of weekly visits and daily eye exercises that have been tedious and grueling for fluffy, he has graduated from vision therapy!

3. i wished i could have said something to the mean mommy, something simple and expansive without getting into details like sorry about all that but by the time we left the place, both women were gone. fluffy and i went home, he to E. the magnificent sitter, me to my messy desk where for the last two hours i’ve been trying to get work done in between trips to the internet to read up on various things, none pressing. casey from american idol, for one. he’s got my vote. i love that james durbin, the young man with aspergers and tourettes, the one with the sweet fiance who leaves encouraging notes all around their house, the one with the sweet baby gurgling on the carpet. ‘he’s got an unfair advantage,’ my friend says. ‘autism. you know, perfect pitch, absolutely no self-consciousness on stage.’ which goes to show you how individual autism is because in her house, it’s true. her son has perfect pitch and a truckload of performance gifts and not a shred of awkwardness on the stage, dancing, singing, acting the lead in show after show and he’s all of ten. but in my house, animals howl when fluffy sings and the mere mention of acting something out is so agonizingly embarrassing, he might sock you in the nose.

4. someone forwarded a report on radioactivity. apparently, increased levels of radioactive iodine have shown up in massachusetts rain water. i, in turn, forwarded the article to a friend of mine and she wrote back “Bummer. I’d like to take all the nuke owners, who lie about the risks and cut corners on maintenance and safety, and air drop them into the reactor core in Japan. Then we can study them and see how safe it all is. Also, all owners should be required to live on the complex with their reactors and children, and eat only food grown on the property.” these comments struck me on many levels: (a) funny because she was clearly being outrageous, (b) frustrating because it would be impossible to enforce such a thing yet its outlandish nature ought to be enough for everyone everywhere to begin dismantling every colossally hazardous nuclear facility in existence, and (c) comforting because, well, maybe she would have yelled at the mean mommy in the waiting room too.

fluffy’s new blog

we’re trying to encourage the fluffyster to log some thoughts and ideas on games, his favorite topic. he loves to play them and talk about them and invent countless variations to existing games but whenever i suggest jotting down his ideas, he resists. don’t know why. (any thoughts, dear reader?)

writing is ghastly for him. typing is not much better. i’ve signed on as his secretary, perched on the edge of my swivel chair, eagerly awaiting, coaxing, cajoling, encouraging a word or two to get the process going.

today, i suggested an interview. he agreed and the moment i pulled up the screen, his usual bubbling stream of shouts, songs, hums, words, questions, answers, proclamation, etc., vanished into thin (but warmer today–i actually had the window open for a few minutes!) air.

here it is. a comment or two would do wonders.