Balloons

Growing up, we had a two-story-height roof in a mostly 1 story room, and balloons would escape and just float up to the roof, unreachable but still visible if you looked up. Even the adults couldn’t catch them, because even my parents didn’t have thirty-foot long arms. The balloons would just sit there for days, above our couch and our table and our living room. Eventually, they would float back down to the ground, but by then they would be sad-shriveled-not-floating balloons. The fun was in the floating and the bobbing and the magical-THIS-BALLOON-IS-FLYING.

That’s where all my thoughts and ideas are. I forgot to hold on to them or I miss the chance and they float away up to the ceiling. They are there, but by the time they come back to me, they are sad and are missing the parts that I was interested in. I miss posting things on here and figuring them out by writing about them. I figure so many more things out by writing them, but I keep missing the chance to grab them. There are tons of half-floating ideas that I think of when I am biking to school or walking to the bus or somewhere else. They are half-remembered ideas just out of reach and it’s frustrating.

  • I have ideas about sensory overload and spoons on crowded buses home, but then I am too tired to write them down, and they float back up to the ceiling.
  • I have a half-developed theory on my ideas and thoughts on Appropriate Social Behavior and eye contact and my semi-autistic family.
  • There’s something I remember on my bike half a mile into the trip about keeping Bad Thoughts Out.
  • There’s something about executive function and what bits and pieces I have and what bits and pieces are broken.
  • Some more bits about thinking in general.
  • There are other ideas there, too far away to work out what they were, but they are still there, hitting up against the top of the roof, bobbling around in my brain. 

I can tell they are there, but I can’t tell what they are. I want to be able to reach out and pull them down and figure them out. I want to classify  my thoughts and order them out so I can figure out how and what I’m thinking. And whenever I succeed in grabbing them, they are only half-there. It’s the sad old not-flying balloons. The essential part that made them good and interesting and desireable has diffused out.

I’m doing fine, generally, in life, but busy with TAing and actual lab work and grant writing and literature reviewing and wedding planning, and I just don’t have the tools available now to reach up and pull down those thoughts. I want to be able to figure out how to grab onto them right away so they can’t escape to the roof immediately, to take them and run to my normal-sized-roof room right away, where even 5 year old me can reach the string of the balloon if I stand on a chair. But I don’t have thirty-foot-long arms to reach the ones on the ceilings, and they always appear when I can’t grab onto them. It’s a minor annoyance. I don’t need balloons. I can get along fine without them. But they make life better and I want them.

Advertisements

Creating my own standards

This is not relevant to this article, but it was one of the earliest images that popped up when I googled the title of this post looking for a good image. And I really do love xkcd, and I didn’t come up with a better image for this, and I prefer to have images in my posts, so I am sticking with it. Because it’s always good to have a bit of fun in there. 

 I’ve been struggling a lot lately, with prelims and lab choosing and moving and a million pieces of life (which is why I haven’t written much in August). Errands and jobs and tasks that require communication and planning and new skill sets. There is the constant low level anxiety about being in a new place right now, which uses up spoons just existing until I get adjusted into life here.

And I’ve been trying to keep up with graduate school and doing my best and trying to make a good impression so that people like me and let me into programs. And maybe I have been trying my hardest and maybe what I have been is good enough.

Or maybe it isn’t. I sort of think that I should be trying harder. Trying to improve myself and be better. There are always things I need to work on.

Today I read this (emphasis mine):

“I feel as though many of our autistic kids can never escape from this idea that they must always be being corrected; must always be being taught; must always be building on skills; must always be attending therapies and classes; must always be being “consistently disciplined”; must always remember every second of every day that they are autistic and that they have so much to learn, so far to go, so much more that they need to be.”

~“Are We Trying To Hard To Teach Our Autistic Children”, Suburban Autistics (Also read the rest of the article, it’s great!)

There are so many things I need to work on. I identify a new area where I struggle when talking with boyfriend and he says “ok, we can work on that”. But if we add up all the things that “we can work on” then I don’t know how I have any time in the day to actual get my work done*. I can’t always be working on not panicking or working on not hiding my face or working on one of the million other things I struggle with that are things that need to be done to be professional and successful and effective at communicating and get things done.

And then I get overwhelmed by the amount of things I have to do and it is a horrible positive feedback loop that just spirals out of control.** And that is no help at all and does not lead to more things getting done.

I have to remember I am the one who is creating the standards for my behavior. I can make them reasonable.

As long as I get by, I am doing ok.

I need to eat. I need to do reasonably well in grad school so that I don’t get kicked out. I need to pay bills and pay rent. I should try and avoid going into debt. As long as I stick to that, I am doing ok. It is fine if I watch a lot of tv. Or if I hide in my room and don’t talk to people. Or if I do talk to people. Or if I don’t exercise. It is all ok. I am surviving.

On days I remember that, I am fine. I am more productive. I am happy. Of course, determining what “reasonably well” means is a whole issue on itself…

~~~~~~~
*They are usually things that I do need to work on, like being able to make appointments or go to the doctor or go to a meeting or such things.
**I really want to say a negative feedback loop, but that is wrong. A negative feedback loop will turn itself off or regulate levels, because it negatively effects itself. A positive feedback loop builds on itself and increases and increases. One biological example of a positive feedback loop is peeing.

telling autistic

Some more choosing-a-lab/grad-school-struggles randomly and when that happens I am not very good at writing at paragraphs or capitalizing or even really going back and editing it but also because I am still sort of mush on this topic and ideas right now. So sorry about that because I know lack of capitalization and even also inconsistent capitalization and punctuation can be distressing to read to me at least so here’s a heads up that it is all sorta meltymushy.

one problem i’ve found that I have with autism
and why i don’t want to tell people
or can’t

because for the longest time i would read stories of kids with autism–because its almost always kids in the stories
and i thought it couldn’t be real
because they sounded just like me–a bit younger often, and with a tendency to be boys—and I was not a boy no way who knows what boys were up to or how I could related to them
so i thought most of it was a new made-up craze
that things were overconcerned and overpathologized when it was just people being people

of course
eventually i realized that actually in these stories these kids who couldn’t really have something Named, couldn’t really all be that different
because it was things I did
things my family did
things I didn’t think at all were unusual because they were woven into my everyday life

that these things were not actual Things That Everyone Does
but rather, unusually unique to me and occasionally family members
and this group of autistic

I would keep reading the stories before I realized
because I recognized something similar
but also reading them trying to figure out what exactly it was that made these kids different

sometimes jealous of the more-overtly-things that meant they didn’t have to talk to people
or somehow were allowed to do things in public I knew that were not allowed but they were ok for them
not knowing how amazingly lucky and accepting my life had been–which is probably one big WHY that no one noticed things about me

and now i’m struggling with some things in school
contemplating telling people to see if that would help
—by people i mean official school people—
(although i don’t know who i would tell since i am not even in a lab)
but I’m afraid they won’t believe me

because just like my family was slow to believe when i told (some of) them
because it was just things that everyone did
i live in a world of science and scientists
and a lot a lot a lot of the things I do are not all that uncommon–at least compared to the general population
there is at least one professor who I am almost positive (upwards of 90%) is autistic too
and there are others with hints
and so i feel like it would be less believed
because the straits stand out less–which is sometimes good
but makes asking for help harder

—well, that and the fact that I don’t have any actual official paperwork of any sort saying i was autistic. probably a flaw at that time that i should have predicted coming up in the future

maybe when i get in a lab officially
i will eventually tell that PI
and help figure out solutions

In general, i’m not very good at telling people
i’ve told one person who asked directly
i have told 2 close friends
i told boyfriend

i wish people would ask directly
that is why i didn’t even tell the therapist/pysch person
because it didn’t come up in any of the questions she asked me

but i think it is very rare that people will do that
it has only happened once

so i probably shouldn’t hope for that

hows and whys

I have to choose a lab and that is no fun because they don’t really tell
you the hows or the whats or the whys and whenever I go to try and talk to
people, they just ask be questions. When what I am asking for isn’t the
questions but the process. What is the process for choosing a rotation. For
choosing a lab to work in. I would like a protocol. I would like some
directions other than “find a lab”. How do we find one? Once we have
identified one that we think we would like to join, how do we go about it.

They say go and talk to the faculty, but they don’t say what to talk about.
So I go in and talk and end up just as confused at the end with no specific
progress.

When I ask how to choose a lab, how to join a lab, they do not tell me.
They ask me questions that lead down a different path. I want to know how
to contact people. I want to know the how about it.

Even if I get the strength and spend days and days making the words and
walking around outside the building to prep before going in with explictly
said words “I would like to join your lab” it does not work. It doesn’t
come out… the words don’t want to listen at all. So I just sort of go
there and nod and murmur along and agree to all the things and say
everything is doing great and run quickly quickly quickly through the
little bit of the script I can still remember. And we end up more confused.
Both of us.

Once I tried to write it down on a post-it note I brought in.

Sometimes they ask me questions I haven’t prepared for and I have no answer
for and I scramble for them in bits and pieces and try to make words out of
things that aren’t words.

I know it is because there are multiple of us trying for the same lab and
there is so much that depends on it on funding and who to choose and what
to do but I do not know how to do it. I do not know the how.

And I’m terrified I’m too slow. I sort of already had one person tell me no
because I didn’t express interest and I don’t know how to show I can
express interest in a clear and obvious way. I know how to do it in the
ways my interest and happiness works. Although the lab I want to join was
the first, when I was less skilled at digging into the problems and hiding
in the data and building a home out of it. I’m afraid the other person or
people trying for this lab will win. Because they know the words and the
procedures and don’t seem to have to prep with words on a post-it note or
walk around and lie down in the grass afterwards to process and figure out.
And they know the words and the ways of people and all I have is the
long-ago memories of the brownies and blondies and other treats I brought
into lab in October November December.

Processing is not my strong point.
People is not my strong point.
Choosing is not my strong point.
Fighting is not my strong point.

Processing processing processing.

Why do I want to join your lab?

I know in the patterns. I know from the part of my brain that doesn’t think
in words. With the following of patterns. Where all the things come from
patterns. I can tell somehow. I know I was happy. I know I liked the work.
I don’t know the how the why the reasons, at least not in words. The part
of me that knows things like this doesn’t know in words, not always, and
there aren’t words or translations leftover.

But that’s not an adequate answer. That’s not a coherent explanation.
That’s not a convincing reason to choose me over someone else. If I can’t
articulate *why* I know, just that I know, it isn’t particularly helpful.

The hows and the whys and the words and the work and the reasons.

Looking for a word

I was looking for the word to describe why I did so poorly on retreats, why they terrified me, why I was absolutely miserable on all of them. How they were just awful experiences for me, and the only thing I got out of them was how not to cry. How I spent them in rooms of strangers and waiting forever for figuring out how all the other people were doing things that were making sense to them.  How I wish I had known I could call my parents and have them bring me home, but I had no idea that was a possibility and no idea how to go around doing it. For a word for the explanation.
I know that word, or at least a summary of it.
But I won’t tell other people. I both desperately want to, and am simultaneously terrified to.
I don’t want to use it to explain away excuses and failures, to be a bad example, to give it a bad name.
I don’t want people to believe I don’t have a claim to it,either
There are so many times, when I am trying to explain a social thing, where I am trying to explain how my brain does not do the thing, or how I have complex work-arounds to allow my brain to do the thing, and I can’t find the word.
Or more accurately, won’t use the word.
Can’t
Won’t
Can’t
Won’t
Autism. Autistic.
It would make the explanation quicker, perhaps. But I can’t make myself use the word. Not in “real life” to physical people who actually know who I am.
It might not be the best thing, professionally, so I can understand on holding off on it there. But what about socially? When I am interacting with boyfriend’s priest friend, or his Jesuit-in-training-friend (yes, he knows a lot of priests/priests-to-be)… they are a social interaction that is not at all connected to my professional life (most of my social life is connected to my professional life, so I suppose it could be iffier there).
I am mad at myself for not using the word when I know it is there.
I am mad at myself for wanting to use the word when I am not sure if it applies to me, or if I have a real claim, or if people would think I don’t have a real claim.
I am confused and tired and stressed.
I know the word, why can’t I use it?
I know it is tied up in ideas of disability, and that I am afraid of the consequences of that. I would rather it be a personal failing of me, of me not trying hard enough, of laziness, in some ways, than being a thing I can’t do.
Shame, maybe.
I don’t want to admit I can’t do the thing.
Especially when I usually can do the thing, it just might require a lot of energy that I might not have at the time, so it is then laziness maybe.

ALSO:
After writing this, I read this and it is sort of related and similar and says sort of same-like-things. So it reminded me of it and I will link it here.
http://youneedacat.tumblr.com/post/90697898185/why-atypical-was-so-damn-important-to-me-as-a-kid

Clingy

I like things to stay the same.

I like when people stay the same.
I want to be a clingy clingy girlfriend, but I can’t even really do that because he isn’t physically here, and it is hard to be clingy when you don’t see people in person. Because I want to just curl up in a ball all day and have boyfriend hug me forever, but I can’t because he isn’t here. That’s a once-a-week-thing, if schedules coincide and work out well.

I want someone to direct my life again. It was so nice when I was home and I did not have to decide the structure of my life. When food was just automatically produced at the times to eat. Time to sleep and time to wake up was generally predicted. Activities were planned.

I want to cling to things that are the same.
I don’t want to be a new real adult person.

I don’t want things to change.
I’ve been watching Arthur because it reminds me of things staying the same.
Always the same intro. 
Always the same people.
Always the same age.
It’s comforting.
But that’s not real life.

I have no idea how I am going to get through the self-structured-self-ordered grad school life for the next undetermined-amount-of-time-that-is-probably-between-five-and-seven-years.

I want structure.
I want order.

I want someone to tell me what to do.
I try googling for answers. But google doesn’t answer “what should I do with my life” or “what should I eat for dinner” or “what is wrong with me” or “please help me” or “what should I do now” or “I am lonely” or “why is boyfriend still at work” or so many other things. 
Google is not at adequate support network.
And the worst part, is I know that I have one. But I don’t utilize it. I know I can call my parents and talk. They have told me that several times. But Sundays are the day I call my parents. That is the day that I call them. And I don’t—can’t—tell people about this blah-ness, this I’m-not-sure-what’s-wrong-but-I’m-lost, the something is wrong.
I can’t ask for help when I don’t even know what is wrong or what I need help with.
Clingy clingy clingy clingy clingy clingy clingy. I just want things to be right and not wrong, so when I find moments that are more right, I want to grab them and not let go.

Bouncing off the walls again… If only I had a word (for this)

Bouncing off the walls. Mostly off the desk, actually, because my neighbors are asleep downstairs, or if they aren’t, it is 12:46 and they have the right to not hear bouncing and pounding on the ceiling (and I don’t mind bouncing off the desk.) Flapping my knees up and down while sitting crisscross.

This sort of movement means something is wrong. I don’t have a word for this feeling.

I check my flow chart and it tells me I am probably tired so I should go to sleep.
It doesn’t have a solution for when I don’t want to go to sleep.
I don’t particularly have one either.

Maybe I should go to sleep.
Sleep is a good thing.
I know how to go to sleep.

I can hear the world around me.

Can you hear the sounds of the world?
I haven’t quite figured out what they all  are.

There’s a constant faint hum/buzzing noise. Maybe it’s the freeway, but I think that’s a few miles away, so it shouldn’t be that. It sounds more like a generator. I hear hums and buzzes all over the world that no one else seems to hear.

I used to think I could hear the world breathing.

The humming noise has been joined by the sounds of my apartment. Stream of consciousness never worked well for me because I can only type one at once. I need a high-throughput thought machine, a next-gen sequencer that can sequence my thoughts in real time. Then lay them out. Fancy computer cores dedicated to analyzing them. To finding the patterns. Figure out what all the intergenic regions are in my thoughts. I think I am taking this analogy too far.

It’s 12:53. I should sleep.

Bad news bears.

sad sad sad sad.

jump leg jump

bounce and bounce and bounce

I can hear the lights and the heaters and thats ok. There’s so many sounds.

This doesn’t happen every night. But it happens often.

I do not like falling asleep.

I am bad at it.

But it is necessary.

(That sleep thing.)

And this isn’t just a sleep thing because this doesn’t just happen at night. I wrote half of this months ago,  during daytime, and it’s the same movement today.

I don’t have a word for this feeling. I don’t like it particularly. I have a tendency when I move like this to start googling solutions to my problems. Not in a helpful way. But more in a “I type my answers into the google search box and hit enter and weird things come up.” I know that’s not how google works. I know typing “oh hey autism words and stuff” will not probably tell me anything. Although the first link was Nattily’s post “Oh Right, It’s Not Just Autism” so that part was cool.

It did not tell me the words for what this is though.

Because I want a name because maybe then I could find a solution.

It is a general apathetic view on life, but not with the lack of motion that apathy is. Apathy looks different. It’s much floppier and tan. It’s wanting to go do everything but not being able to get up and start anything. It is uselessness. It feels like uselessness and the ideas of uselessness look. It’s the motions of uselessness. (Not of me being useless, but just the ideas of uselessness. It’s sort of confusing, but it makes sense to me. Admittedly, it’s also 1:30AM.) That’s not quite the right word, but it’s closer than apathetic. It’s disorganization and no way to solve it.

Maybe I just need to start reading again. Up through high school, I used to read at least one book a day. I’ve got lots of book here. All my books. Maybe I need to read a book every day. Maybe that will be the solution.

It’s frustrating.

I do not like this jittery bouncing-ness.

I should go to sleep.

 I tried googling what am I feeling when I am bouncing apathetic and uselessness.

Google does not really have good answers for this.

Just like when I google what should I have for dinner, google never tells me the answer.

(Because that’s not what google is for.)

I wish I had words for this or answers for this.

I should go to bed. Or at least go to my bed. I can pick out a book and read it in bed under all the covers with only the small light that I can turn off without getting out of bed. I have all my books here. My good safe books.

Pjs. Brush teeth. Retainer. Lights off. Get into bed. Under covers. Read.

That is what I will do.

I will publish this at 1:35 and get ready for bed and then go sit in my bed with a book I have read hundreds of times until I am still and until I can fall asleep. And in the morning I will find solutions. Or at least later in the day or year or some point in time.

~~~
P.S.

Also, I sort of want to make a note about things here. I feel like I’ve gotten really sloppy in all my writing on here. Lots of breaks with lines instead of writing much in whole paragraphs. Disjointed writing and disjointed words. I sort of feel weird putting up some of the sloppy, messy stuff, but really, I can put up whatever I want here about myself because it is my blog and I think it is still useful for me to write this stuff even if it is disjointed things that don’t become really coherent ever. I’m ok enough and I’ll figure things out sort of eventually and hopefully soon I’ll be able to write in paragraphs like a real adult again (slash I will have to be writing paper summaries and stuff, although usually science writing I’m pretty good at at any given time.) Anyway yeah…. Stuff and words and all that.