Tuesday, January 19, 2010

mouth noise

you aren't listening:
when you taste color on your tongue
and music explodes across your skin
and numbers play a symphony across the page,
what words can take
the taste of a sound
or the deep thrum against the skin from a rich smell,
can make the shadows dance in joy
against the candle flame?
what words have ever described
feelings that lap against the shores of the soul;
the great dissonance from reality
as senses meld and melt and reform
into the every day that is how i perceive?
what words can form the emotions
that bubble up into a fount that bursts through my skin
and into the world around me
fascinating me with the rhythms and sighs
that pulse and breathe from every object i interact with?
when words fail utterly
and i shout with all my senses inverted
until i feel deaf with the input
and still you do not hear.
you do not listen to the way a raindrop glitters
and holds entire worlds
until it splatters against a surface
dislodging its inhabitants.
what words can recreate my world for you
so that you can perceive
through my senses?
speak express emote, let you in,
emoting makes you nervous
full of tapping drumming humming spinning
emotions pure: love and fear and anger and sadness and joy
laughing crying stomping shouting
mutters flaps disjointed words
interacting with worlds you don't see
details you don't notice
rich tapestry and you can't count the threads.
why make words
useless abstractions that tell nothing
mean nothing
until there is a word that means
the taste of a shadow on your tongue like the last wisps of smoke from a blown out candle

Saturday, January 9, 2010

an average abi day (or how do i have a job??)

i wake up when my alarm goes off and i chitter at the alarm.

literally chitter. like an angry mongoose. because it woke me up! i usually have it set to NPR and i listen for a while until it annoys me into sitting up. then i go to the bathroom and get a glass of milk and go back to bed and drink my milk.

usually i sing to my milk. and to my cat who is snuggled back on me for a nap. and sometimes i sing to the morning and to the sun in the window and to the alarm clock. they're just little songs. like "my milk is cold and full of fat and makes my tummy happy!" or "amira is my cat my cat and she is a fuzzy attack cat!" often the body needs to stomp and dance and spin and tap things when i'm going on my milk mission. so i stomp and dance and spin and tap things. the body is happiest when its needs are met.

anyway, i usually choke a few times on the milk because i'm drinking while singing, or i just forget when to breathe, and get confused on the order in which to do this. sometimes i upend my entire cup of milk on myself and have laundry to do. this makes me annoyed at myself. i have a lot of pillows so that i'm sitting up nicely so that i WON'T kill myself with my breakfast, but sometimes it's hard to do things in the morning. (that makes it sound like i don't choke on food all day long. i do, actually. it's not a morning thing, it's just WORSE in the morning.)

if i haven't spilled my milk (i don't cry over it), i usually get my laptop and check email. amira usually demands i let her under the covers so i put my knees up for a tent and she naps while i check email. i check my favorite forum too. and then i usually start to strongly consider the day.

first i consider that i'll have to work. after my panic attack passes i consider i'll have to put clothing on. i get too comfy otherwise, and don't take my job at all seriously. after i get all the flapping out over that idea i go back to the idea of work and flap some more. then i ignore work and see if there is something comforting going on, like friends online. then i usually remember food so i go get breakfast. i like bacon and eggs, or cranberry bread slathered in butter.

after i eat, i pace around making sure my room is still my room. i check to see what has changed while i sleep. amira watches me with, i'm sure, a mixture of annoyance (because she already did this today) and understanding (she had to do this today too). once things appear okay or i correct them into okayness, i change her litter and make sure my alarm is set for the next day and then i listen very hard for a while. i have to know who is home and where they are and what they are doing. amira and i sit on the bed together and both listen for hours. sometimes i chat with friends online while i listen. sometimes i just listen. sometimes i flick my fingers in my ears so that i can listen more precisely. sometimes i have to close my eyes and sometimes i want music.

when it is about 230 i panic because i have to go to work. i usually stomp and fuss and make lots of rhyming words and pace and flap. and then i run and turn my computer on (i work from home) and run back to my room to hide for a few minutes. then i run upstairs to the bathroom and make sure i'm washed up and teeth are brushed and my hair is in a neat braid (or else my headset bothers me).

then i trudge back downstairs and put my laptop next to my work computer and make sure that everything is set up for work. i have to have my tissues in case i get a runny nose. and i have my mug warmer in case i need a mug of coffee. and i have my bottle of water that i fill. and i have a pad of paper and pencil. and my laptop has to be at the right angle. and my chair at the right height. and the headset at the right volume. then i go through all my logging in steps.

then i flap and sing and rhyme at the computer while i log in to work. it's the worse part because the inevitable is coming. i try to be very cheerful when i log in to the chats at work so that everyone knows i'm a real trooper. i don't want them to know i die all the time and cry at work.

to die: when everything overwhelms and you fall into the dark and you have to put the pieces together enough to come back to the surface.

then i log in and i check to see how many calls because i have to panic every time a call comes in and i want to have an idea of how much adrenaline this will take.

then i have to test my voice. it takes a LOT of concentration to make my voice have "energy, empathy, and enthusiasm". but you have to have that at work. and then i put my brain through harmonization exercises so that i am ready to hear and harmonize with the voices on the phone. then a call comes in and i try to not scream out loud. i hear for a while their up and down music voice. then i match the harmony and then i try to make words out of their mouth noise and then i can't hear the music. i have to go back and forth. listen for music. listen for words. back and forth. once i can make harmony i need words so i know what the puzzle is for the call.

those are my two games to make work... well, work. one is harmonization. this gives my voice "tone" and stuff. you just harmonize to their music and it just happens on its own. i get a lot of compliments on my voice. i'm glad because i work very very hard on my voice. the other is the puzzle game. each customer has a puzzle for you to solve. they put lots of obstacles up to make it harder and you have a time limit and lots of rules and you have to make it all match up in the end. the harder the puzzle the more you don't have time to music because it's all words and then you lose tone but you get a really tricky puzzle solved and that's more fun.

i very much like these games. puzzles are always good.

then i have to put notes in about what i did and then i have to let my ears let go of the voice so that i can hear the next voice. when it is busy, i have to log out for a bit to let my ears empty. if i don't all the sounds pile up and i get very confused. sometimes it is too busy and i stop hearing at all and then i can't remember how to do any part of my job. i usually muddle through by asking for lots of help and then i log out for longer until i can do my job again. so far i haven't gotten in trouble for this. i think i'm not the only one who does it because my job is from home and people who work from home tend to not work OUT of the house for a reason.

sometimes my ears won't clear out (it's a stressful day or i have to go to the bathroom or i'm hungry or i'm tired or there is weather or there are smells or there is noise upstairs or any of the other things that overwhelm the senses) and then i have to figure out if i can fix it or not. usually not and i just get more and more stressed each call until i have tears in my eyes and shaking and confused and then i die and hide and sometimes i ask to take extra breaks but i try not to too often. usually i just push through and don't care if i am dead i just have to do it or i won't eat because you only get paid if you are actively on the phones so there's nothing to be done but to do it!

that always sucks.

today there was a smell. i don't know what it was. but it was very loud. my brain decided it was popcorn. it was very loud smelling popcorn. it was so loud my ears couldn't hear and i couldn't make words quite right. i had to think very very hard to make words happen at all. words are my archnemesis, at the best of times. my whole skin hurt from the loud smell and i was very very upset. then i tend to type inappropriately but i've rarely gotten in trouble because so many of us are inappropriate at work. i think i'm not the only autie on this job!! anyway, after work i went upstairs and i flapped at everyone very loudly and there was no popcorn. they had made rice and pork. but popcorn is the loudest smell in the world and my brain had decided that is what the smell was. after i flapped loudly at the world i retreated back downstairs to my room and my cat and then things were okay.

usually at work my ears hurt and my throat hurts from hearing and talking. my eyes twitch from having to focus on the screen. my skin hurts from the noise and the overstimulation. i start shaking about an hour in and it gets worse all shift until i sometimes sit on my hands to stop them. i rock in my chair a lot. i also dig my nails into my hands. sometimes until they bleed but not too often. i have a headache every day from listening so hard to music and words and making the words make enough sense to use them.

the best part of the shift is lunch when i can go away for half an hour and eat and not listen.

eventually the bad stuff ends and i can log out and be DONE with it. then i have to flap and stomp and i try VERY hard to not have to bang my head into walls but sometimes that is very difficult. i usually mutter and lot and if i bump into people i fall into autistic speak instead of NT speak and sometimes this bothers them but my friends are used to it. then i hide some. sometimes under the covers or in a closet. usually amira demands a tent and i sit on my bed with a cover on my legs so she can take a nap. it's very hard work watching me work all day. she sits in my lap as much as she can and when i get too flappy she helps by sitting on the mouse, blocking the screen of the computer, or trying to remove my headset. she knows those are the problems because i use them and get very stressed. i always appreciate her help but have to ask her to lie down in my lap and let me work. i hate that part.

then i usually tell my friends how mean work is to make me take calls which cracks me up because i get paid to take calls. but that's okay. i'm just glad to HAVE a job since a lot of people don't. i repeat this to myself all day long so i remember to not quit my job just because it hurts.

i always have to remember that most things hurt and if i want to eat i have to hurt. that's just life. it's not like if i was a wolf in the wild food would just walk into my mouth! you have to work for a meal or you haven't done your part in the natural balance of things. this helps a lot. it's a rightness even if it is not enjoyable.

i like a lot of people i chat with at work, though. that part is fun. if i didn't take calls and i just looked up answers for the people i work with i'd really enjoy my job. i am very personable. i'm also very good at problem solving. really the only hard part is voice translation. it's just that that is MOST of my job right now. i'm hoping to get promoted to being a helper instead of a voice translator. then i won't answer calls, i'll just help people i work with answer questions on THEIR calls. this seems a much better division of labour. i'd have all my favorite parts and they could do the parts i hate!

eventually i flap enough to feel calm. it takes about four hours. then i can start thinking seriously about sleep. i refill my new humidifier that makes the smells last longer so that i'm more overstimmed and don't always sleep because i'm too busy identifying smells. i hope i get used to it soon. lack of sleep doesn't help my stress level.

then i make sure the covers on the bed are good. i let my bed air out when i get up but i usually make it during the day and then just make sure it is right before i get into bed. i have to have the pillows stacked right and the covers turned down right to sleep in it. i also have to make sure the clock is at the right angle (or it's too bright) and the time is right. i go and make sure all the lights are off and my water filter is full so i have water to drink, and that amira has food and water, and then i get myself food and water. and then i go to the bathroom and get my teeth brushed.

then i think about sleeping and usually get very stressed because stage four sleep is a scary thing. you are in a coma. i read about this. you don't just poof wake up when you hear a sound. but i comfort myself that amira would make a VERY loud fuss if anything came to get me and it would wake me out of even stage four sleep and then i lie down and toss and turn for a while. then i try to shut my senses off but really i am very awake listening to every sound and smelling all the smells. i make it very dark but i still see everything. there are lights outside the windows. if it does get all dark i see images from my eyes in the dark all night long.

since it takes me a few hours to fall asleep, i usually just play a movie or a book in my head. or i tell a story. i let myself fall all the way into it because i figure that is just like dreaming so it's nearly as good as sleep. then i get up and go to the bathroom and then i get more water and then i lie back down and try to get comfortable again. i usually repeat this for a few hours.

sometimes i wake up and hours have passed. sometimes i am pretty sure i am asleep but i'm fully aware of everything and i know exactly how much time has passed. i'm not sure that is really sleeping. sometimes i spend all night with a story in my head and discuss the day with all the people and i'm not sure if i'm awake or asleep. when i dream they are usually epic or weird. not scary too often anymore, at least. but i wake up a lot. there are sounds and smells and lights (cars pass the window) and dreams and thirst and having to pee.

i don't often wake up rested.

eventually the alarm goes off again and i chitter at the alarm.

soon i'll add school into the mix and then things will get easier (because i'm so worn out) or harder (because i'm already too busy just having a job) but either way it'll be interesting to see what happens, i suppose.

mostly i think that life is about teetering on the cliff edge and throwing yourself off to see if you fly or die. if you don't push yourself to the breaking point all the time, you probably aren't growing. and if you are constantly breaking, somewhere in there you must be put back together or what is there to break? and that probably indicates you are learning to cope somehow.

i spend a lot of time broken. it doesn't bother me anymore. i just keep going. i don't think autism is a limit in any way. i don't believe in limits. there are challenges and most you get past (proving it's not a limit) or you don't (because you haven't figured out how yet).

it keeps my stress level very high. and i burn through a LOT of calories. i keep my diet really strict and make sure i have fatty snacks so i don't burn out. i think i also produce a lot of adrenaline. it's pretty hard pushing yourself over an edge so often. but if you don't, you don't eat. so i guess i'd rather keep myself going over than be hungry!

so that is my view of autism. you either cope or you don't. if you don't, you are going to really go hungry. it's also okay to hurt a lot. people get scared and don't do things just because they hurt. but if you really are scared all the time, eventually the fear loses power because it's just always there. so i'm scared now. and if i go to work i'm scared then...

so no loss to go ahead and throw myself over the cliff again and go to work and be scared. i mean, how is it different than not working and still being scared? well, i make money and am pretty much independent. so that's a difference. so if you are going to be scared anyway, be scared usefully!

and that's pretty much what being an adult high functioning autistic is about. being scared in a more useful manner than we did as children.

the loneliness and all that fussy stuff is there too all the time. and all the questions and weirdnesses. but that's for a different post. this is just about making it to a job every day and not caring about how bad it feels. there are a lot of very good parts of the job. so it's not even all bad no matter how wearying it is. that's another plus. things are always good if you think about them right. sometimes you have to squint and flip upside down and then jump up real quick so it's covered in colors and spots and spins. but you can always find a good if you try!

i like working MUCH better than i like not working. i eat a lot. i need money. i also like a safe place to sleep. and amira needs a safe warm place too.

so, after balancing all the factors that come of me working.... job = good.

Dasha's Journal: a review

I read Dasha's Journal. It was very exciting. I went to my library and they did not have it. It wasn't in my whole county. So I filled out a form (I haven't yet filled out a job form correctly ever, but if I get books apparently I can magically do them) and they gave me the book. Well, for three weeks. I feel very important. I filled it out and they went and got it and I was allowed to read it first.

It is a good book. It is a cat's view on autism. It is one of the very few books I've read where I get the impression the parent really cares about the child for the child's sake and is not angry at the child or the world for stealing the human and leaving an autistic.

We changelings are often quite sensitive to people wanting to destroy us for being a wrongness in the world when we do not feel that we are the wrong ones.

The book explains autistics, not autism, and that is the important factor. While we all want to know what autism is and where it comes from, Dasha is more interested in what autistics are and how they relate. She points out that if an NT is incapable of communicating outside their narrow language, how is it right to be upset that other animals and autistics as well do not easily communicate out of their narrow language?

It was fun to read because I am having very autistic episodes lately and not so stable or controlled and it was nice to see someone who would understand my actions all month instead of being all weird at me because of their lack of empathy.

I shall write a post some day soon fully in autistic speak instead of trying to translate to NT talk and it will be more fun. It is always somewhat painful to force words into fitting for those who read this.

Anyway, good book. Go read it!! If your library doesn't have it yet, they'll get it for you!

Thursday, January 7, 2010

Cannon Fodder

if an autistic cannot see outside of himself to understand others, because we see only ourselves and others in relation to ourselves, perhaps we need to step entirely outside of the question and learn how NTs see NTs and how NTs see autistics and compare this to how we autistics see ourselves and how we see NTs. (NTs being Neurotypicals, or non-autistics.)

but without understanding who the autistics are versus NTs, is there a way to determine which answers go in which category? or do the answers themselves help one decide who goes in which category?

and what kind of questions would really illuminate anything? any question that sheds light on the question would have to be cultural and you would end up misclassifying those not raised in this culture. or are there social questions that would be answered cross culture while still highlighting the differences of one without much socialization?

does how one is raised reflect more in those answers than how one thinks? an autistic raised in a fundamental household will answer far differently than one raised atheist, just as NT children would. would a strictly raised autistic, who therefore has enough structure to function, answer more or less normally than an NT raised without rules and has no structure from the outside?

what's the difference between someone with no structure within but gets structure from without, and someone with internal structure but none from without?

isn't how a child is raised, NT or autistic, a huge indication of how they can and will think later in life? is the child raised to think rationally and critically? is the child taught to blindly obey rules? is the child taught to question or to blend in? and how different are each of these in comparing an autistic and an NT?

truly, most people have children to make someone who will love them and validate them. when they realize the child is a person who has obligations to a family, perhaps, but is certainly more interested in being loved and validated themselves, things fall apart. in a non autistic this apparently happens around teenagehood, hence all the drama therein. for autistics, it happens in toddlerhood, if not sooner, hence the fatigue and desperation of the parents.

how would a parent who simply loved the child react? if one had less to lose would one have more patience? if one loved and validated themselves would one have less anger at the child for not providing these things for them?

i've often read that the reason parents put up with the sleepless nights and the crying and all the bullshit an infant puts a parent through is for things like the first smile, and the child connecting and learning to talk. in essence, the kid giving back a bit, dammit. so what happens if the child has nothing of the sort to give? the things an autistic has to give cannot be understood until a lot more barriers are breached by both parties.

so is there perhaps no reason for the parent of an autistic to give to the child? the child is not fulfilling their end of the bargain, if you think about it. what right does the child have to not unconditionally love their parents and to not bond and to not smile or do those endearing little things that real children do?

is it not, then, more of a wonder that any parent of an autistic takes the time to find ways to reach the child, than that a parent of an autistic gives up and just tries to get through the day without sending the kid to an institution?

anyone who doesn't pull their own weight has no purpose in a society. they only drag everyone else down. there are noble things, i have heard, like taking care of the useless shows some human spirit of those who help, but let's be realistic. dead weight is dead weight and a child who does not do their share in adding to the family dynamic is, indeed, a dead weight.

so i have to wonder if this big drive to understand autism isn't some noble let's reach them pie in the sky bullshit, but rather a way to force the kids to be members of society who give back instead of only taking. autism awareness is, when done by NTs, a way to get rid of dead weight and, when done by autistics, a way to convince others we aren't dead weight. perhaps we should recognize that we all have the same goal and find a way to make autistics useful.

instead of changing autistics, why not find ways that we can be useful as we are.

medical experimentation is out since autistics do not respond physically the way most people do. however studying the results of medical experiments might yield good results as autistics get stuck in very different thought ruts than NTs do.

we are good at throwing fits and being overwhelmed by noise which could very well make the most effective front line cannon fodder ever in a war. here comes a group marching toward you and you startle them, and suddenly the noise and wailing and shouting and screaming is more terrifying than a bunch of blue painted celts mooning romans.

we are great at sorting things. perhaps you can hire autistics to sort out trash for recycling. or to find the wrong one in a bunch of anything for manufacturing quality control. we can sort and file for medical records and other paperwork deluged office.

or perhaps they will find that we do best in outdoor jobs, growing things and weeding and helping animals. maybe we all need shipped out to farms where we will get fresh air and sunshine and safe food to eat. actually, i like this plan best. slave labor meets goodwill. the farms get much needed help to do things organically and autistics get structure and a healthier environment. everyone benefits.

perhaps a peta-like anti packaged food group needs to cage autistics and spray paint NTs and show everyone what happens when the world is full of chemicals and diets full of carbohydrates. use us as the poster children for atkins or the vitamin d council. "if you want to give birth to one of these, keep eating HFCS".

if we all work together, we can keep autistics from being dead weights without having to "cure" them (salt cured or sugar cured? and why not just sun dry us?). we can find ways to be useful without having to diagnose half of america to get enough funding to stop us from existing. no one is sure what the difference is between us and NTs anyway. i'm all for the amygdala theory, myself. but if we are just going by behaviors, i think every human shows various qualities of autism. we aren't all that different, just exagerated here and there.

in our struggle to become human, we are going to have to understand what humans are, and i don't think most humans are going to be very pleased with us as we do so. we are going to see far more differences between us before we are able to accept those terrible things that being human entails. and perhaps we can help humans change to be something that doesn't shame us all.

after all, the thing that makes autistics most intolerable, next to our intensity and fit throwing, is our honesty.

i do find it a sign of the rising self esteem of autistics, as a group mind, that we claim anyone genius, prodigy, extraordinary as autistic. einstein, mozart, tesla... where once we saw ourselves as idiot savants and children banging out head on walls, we have come to see ourselves as the geniuses and gifted. perhaps we will even learn, as a group, to push ourselves harder and further than others because of that potential, instead of cowarding and inhibiting ourselves with the knowledge that we are "disabled" and somehow less.

one and all, autistics seem to be questioners. why? how? what does that do? how does that work? when will this happen? why can't i? and we are inherently narcissistic since we don't recognize outsiders. logically, this means we question ourselves, our lives, our interactions, our realities, our questions. it is, perhaps, the answers that help keep autistics locked up within their worlds.

and once we do that and race past the humans being merely NT, will they push themselves to follow us? catch us if you can, because our diversity is going to force us to do more in order to be you until we realize we aren't you, we have pushed ourselves beyond that.