Taking caring of me my own way

I cannot make the decisions you make. I'm glad you take care of yourself. I'm glad you stop and say that you need to. I need to take care of myself too.

I need to take care of myself my way. I need to take care of myself as the person who if I stopped when you did, I'd not do anything, and that wouldn't be something I could manage either. I need to take care of myself as someone who needs to stop for things you cannot imagine. I need to take care of myself as the person who needs to push myself to the limit every day, both because I need to for my own sake and because my body doesn't give me a choice.

I cannot do things the way you can. I cannot leave everything when I get a migraine. I am glad you do. I will recommend to everyone to do it that way. Do not look down on me for doing differently. Do not tell me that my stuff is less severe. Do not tell me that what I'm dealing with isn't really a migraine, or isn't really a challenge, or isn't really "bad". I need to do it this way. This is my way.

I am glad you have the choice of doing something different. I am glad you can leave when every migraine hits. I am glad you can take care of yourself and protect yourself. I do not have the luxury of both leaving and facing the world. I would rather face the world. I would rather push myself to my limit. I would rather roll around a building in a rolly chair unable to stand; I would rather type in an AAC app on my phone; I would rather use a long cane; I'd rather find weird ways of doing something that people don't think of than leave and not let myself manage what I am capable of. That is my way of dealing. It is my appropriate way.

I cannot do everything your way. I cannot take days off work every time I deal with the pain of a pinched nerve. I cannot use ibuprofen to deal. I apply peppermint and cope. It doesn't mean I'm not in pain because I am managing. It is my way. I am glad you choose your way. Your way is better for you. Because I can manage, does not mean you can or should. You should do what is appropriate for you. You also should not minimize what I deal with.

I cannot do things your way. I cannot buy a car and drive myself home from work no matter how many times I'm told I should. It would not be safe. I cannot simply organize all the things to get myself a meal amidst all the noises of a home. I need to take care of myself in my own ways, in all of what that means.

My communication is different; my sensing is different; my pain is different. My need to push through is different. My need to find alternative ways to find a way in a world. So I do it. This doesn't mean I think you need to. It doesn't mean I'm dealing with nothing either.

I'm glad you can step away when its too much. My "too much" has to be different, though. I need to find ways. I need to do things oddly, and I need to say, what's good for you isn't good for me, and what's good for me isn't good for you.

I need to take care of myself, and do things my way, whatever that might entail.

Expectations and the Implication Thereof

Another loud day. Another day where I figure out what I'm doing on the fly. Another day where I'm to do that while people shout around me. But that's what I'm supposed to do, I'm not really impaired at this.

I do the same thing, day to day, whether or not they want me to. I know there are limits from this. I know that that there are other things they'd want me to do, but this is always helpful, and always something I can do. It's always something I can remember before I can't think. I fall into safe space of understanding. But when we finish and I'm expected to do something else...that's usually when its loudest. That's when my head is spinning. That's when I don't know where I am. That's when I try to do something, anything, while I don't know what is going on. That's when I need a quiet space to myself for a sensory retreat to have a chance at making it farther in the day. But, can I get that?

I'm not given it. I have to take it for myself, leaving, and finding a spot. Holding myself close, in a quiet room, hoping it will remain quiet. Trying to recenter myself, trying to find my way back to the world, before I need to re-enter their world. Why am I not given this? Why can't I just have these few moments to myself? Why do I need to rush at someone else's schedule, or go out of my way places where I do not know where I am in such a body? Why can't they find ways to meet me when I work too hard to meet them.

In so many ways, I'm expected to meet the expectations of others about what I can and can't do, that when someone stops and asks "could something help you" or notices when I'm getting agitated, it means a lot. Things which shouldn't mean so much, mean the difference between being unable to face activities I want to do, and being capable of it, because now I have had someone else take up some of the effort, usually at little cost of their own.

In so many ways, these expectations surround me, meaning no matter how much I'm not bothering to try to look neurotypical, it does not matter. There are still perceptions of ability that I am always capable of finding my way around a building in their eyes, and I must find a way to manage or I'm left with only myself falling into pieces and still no help.

Listen

When someone speaks, or types, or flaps their hands, listen. When someone tells you what they need to get through the day, or when someone tells you that they can't handle what is happening, then listen. When someone tells you that they don't mind who they are, that they actually are rather happy, then listen. When someone asks for acceptance, please, listen.

How many times do these things need to be said? Shouldn't it be straightforward for someone to say "Hey, I rather like who I am" and to have people take this seriously. Or to have someone say "maybe it'd be easier for both of us if you just play the music quieter", and for people to do this.

Wouldn't it make sense for people to be able to have thoughts about themselves? And wouldn't it make sense to pay attention to all the communication, whether or not it is spoken?

I don't know, it seems straightforward to me. But, it seems that people don't know how to listen.

It seems that they don't know what is around to hear and what is around not to. That there is communication outside speech seems to be a challenge to understand, and learning how to read it takes time; yet at the same time there is an expectation of normal social cues. That there are voices speaking out saying "please, listen to me, I want to speak about my own disorder", is lost, and they don't find them or hear them; and when the few get through, its drowned out in their expectations of what they already understand to be their truth.

So maybe, its a process, and maybe its the first step. Learning to listen.
So, that's what I ask. Can you try to do that? Learn how to listen.
And then, listen to people who are autistic.
What do they say?
It won't all be agreement.
It won't all be the same.
But there will be people talking out about themselves, what they like, what they don't like, what they want, and how they feel. And they should be listened to.

Myself?
I want to be able to be me without feeling like I'm fighting people every day by existing.
I want people to notice when I need help, and offer it.
I want to be respected, rather than spoken over because of who I am.
I want to thrive.
And I want to find my way in the world.

A Step of Red

Bluewashed.

The lights go up changing the color of the world and saying "I am aware of the 'horror'".

Pity for the parents while the people are told "you're ruining the lives of everyone around you"

I swing, trying to help myself. Trying to do what others will not, while inside I'm crumbling from the words they are saying. Trying to find myself having lost how to share, with thing after thing thrown at me.

My words. My words mean nothing. My words that I try so hard to share. They are lost in the tide of bluewashing, and so I try to regulate.

But then...Along side all of this, there is a step. Someone who listens. Someone who shows they will hear my voice.

Simply, a step of red.

Thank you for hearing me.

Joyful Movements

I want them to see someone gleefully flicking their fingers in front of their eyes as they skip back and forth across a room, awaiting instructions, and the utter bliss on this person's face. I want them to to see the joy of someone simply watching snow fall. I want them to to watch the Olympics, watch the athletes handflap in excitement with their results, and then stop and think about whether they really can say that someone shouldn't do that.

I want them to watch someone just get something for the first time; whether multi-variable calculus, or how to find the formula they need on a sheet. I want them to watch the knowing success of someone, even in something they find trivial.

I want them to let themselves be a child, and skip and jump through leaves. And then think, is it so important that we are so proper all the time?

I want them to let themselves see the smiles on the faces. The joy, even in its own ways.

And say, sometimes, the movements. The spinning, flapping, flicking. It's not disruptive, but it is a delight, among so much else.

Why should we stop that?

Invisible Disability

I'm not who I am. But I am who I am.
I don't get to choose you see.

They tell me my feelings, my hopes, my dreams.
They tell me my struggles, my pains.

Who you see, who I see, are they the same?
Do they tell you and you see someone new?

When I try and I fall, but I do it myself
Then I'm told, oh no, that can't really be you.

Do you see the falling? Do you help me up.
Or do you see someone lying for help?

Do you see someone trying and struggling and making it?
Or do you see someone easily gliding through life?

When I don't see the way, am I alone in the dark?
Or is there someone to guide me along?

When I get lost at a corner that I should see,
Will you taunt me, or show me the way?

If I show you my struggles, will you see them?
Or will you look away, denying.

Am I my voice, or what I say?
Can I be myself, or am I what they say?

Disappearing processing

Usually I just write posts when I have something to write about. I sit down here in order to write out a post, and while what comes out might not have been what I planned, its organized. Alternatively, I write a post in my head as something I want to say, because of what has been going on around me, and share it when I get to a computer.

This is completely different, and feels more personal in some ways. It's worth sharing, so I'm sharing it, but its not what I normally write. This is when I was asked to do something to help out and I couldn't, and went to say something online, what came out. This is what I was saying, while I was losing my ability to process senses. This is a description of senses being more jumbled up in real time.

I plan on these happening. I organize my day and my week so that my body losing the ability to understand the world has minimal effect on others. I have taught myself things from mentally being able to swap visual processing off and just use processing the other senses to understand what's going on (and without vision it is easier to process other senses, especially hearing), to how to get backup information from alternative senses, to what I should carry with me to keep myself safe. I reduce sensory input to reduce frequency, and give myself what I seek more than I seek it.

But still, when it happens it can be disorienting and make me feel like I'm not able to do what I need to do. No matter the frequency, it makes me feel like I should be doing more.

So here. This is one sort of what its like to be losing processing. Typos are because I could no longer process vision even enough to have any tunnel vision; it was just gone. I'm not sure how understandable it is. I feel like its missing so much. But, even little bits help with understanding.

I can't adult.

At school all day today my vision was blurry from not processing vision and I tried to work through that.

My speech was reduced.

Being able to remember where things like the work I was giving them was barely there. If we finished early, extra stuff, I didn't have any clue what to do and couldn't make it up despite usually being great at that.

By the end of the day I was sitting there losing time in dissociation.

I had stuff I was supposed to do here. I got a load of laundry in. I stopped functioning. I've not managed to swap it over. I've not managed to get myself anything to drink. I've been home 6 hours and thirsty the whole time.

My body isn't understanding what's going on around it at all. I'm hearing sounds and they don't mean anything. I'm seeing things, and the things I'm focusing on writing, I can see a fraction of my particular post here, and everything else is gibberish, if it exists at all.

I feel cold on my back and I don't know why. I feel things on my hands that I can't understand. They might be touching things I don't know what. I think my head is spinning. I can't figure it out if it is or not. I can't understand anymore. My vision is getting more lost. I can see colors now. I am typing from muscle memory.

I'm supposed to be doing things. They need my help. If I don't then food will be delayed even more. I don't know how to adult. I don't how how to keep my body froom floating off in pieces. My arms are glued down and heavy and my legs are unattached and my back is only partially feeling things and I don't know what is happening to me.

I need input that I can understand but I can't understand enough to get it. I need things that are clear. I need sound that is defined. I need strong foods. I need heavy weights. I need to be held tight. I need to touch more things. I nee to move and everything.

And I'm hthe only one home and will be for at least another 30 minutes.

At least I'm in bed with my blanket.

Coming Out Autistic

Every time I am open about who I am, it opens up the world a little bit more.
It makes it a little bit more aware that people like me exist.
It makes it a little bit more accepting that people like me exist.
Every time I do an action that we're told we cannot do, it says, "Hey look, this works. Hey look, we can do this."
Every time I say who I am, I make it easier for you to say who you are too.

Society isn't accepting of us. Society defines us into roles, ostracizes us, stigmatizes us. Society fears us and makes us fear it.

And being openly autistic, doing what I want to in life, being impaired and not a stereotype... that helps with teaching society that I am both a verbal disabled autistic adult, and someone who is a success.

And with that, as others do too, it teaches them about autism.

Maybe that'll mean you can be who you need to be. Maybe that'll mean you fear being yourself less. Maybe it'll mean you'll let yourself know this is who you are, and instead of trying to deny it, try to find ways for you to enjoy yourself as yourself. Maybe it'll mean you'll fear others less. Maybe it'll mean you can walk around flapping and humming and wearing ear muffs, and then, go, and be one of the most productive people at your job because they actually gave you a chance to get through an interview. Or maybe it'll mean that you'll go to college when you had thought you couldn't because of the messages around you. Maybe it'll mean that slowly we can erode the idea that working full-time is required to be a worthwhile human being. Or maybe it'll just help you find a way besides a 9-5 to make your own way in this world - whether monetarily or otherwise.

Maybe I can help you be you, by being me.

Passing (or How Little They See)

I walk down the hallway, my hand running across the lockers, across the walls. It keeps me here. It shows me where I am. It keeps me balanced and makes me understand what hallway I'm in and when I need to turn.

I go to the room. The bell shrieks. I freeze up. I forget what I'm doing and where I am. All that I know is the noise. It's too much. I don't know how to move my arms to cover my ears. I don't know how to soothe myself. I just know how to exist, frozen, in space and in time.

I come back. I go back where I was. I continue on, talking about whatever was going on. Had they changed topics? Probably not. Usually its me teaching something. I just keep going. I explain it well. I tell them what is going on. I teach myself that when the bell goes, I need to tell them to leave even if they don't want to go to class. Eventually I remember that. It takes a while to stop teaching and tell them to leave, but not too long.

I have my math. I go back to it. I have how people are doing. That I keep track of. Why they aren't doing well. How can I improve their educations. What aren't they getting and how do these pieces fit together. I keep track of it always. I'm always fitting the pieces together.

They don't notice. They see someone teaching math. They don't notice the person always taking care of their body in order to have any clue what is going on. They don't notice the lack of anything off topic.

Then someone says hi, and I don't reply. They repeat it multiple times. I eventually process that there is someone there talking to me. A bit later I process I should reply. Um, what do I say, I don't know. Too much going on. All my processes on surviving. Not on these things. I try to redirect because its necessary. Enough gets through. I wave. I'm pretty sure that was the right thing to do. Words were to hard but gestures I could force through. I think she got annoyed first. My emotion sense of voices are saying "negative".

I keep going. I have to swap places I'm working. Does everything else get to stay the same? Yes, good. I forget some things in the shuffle. Got most of it. Piece it together. Managed to make it not a big deal that I forgot pencils by loaning out my pen repetitively. All the things I have to think about to manage to swap are so many. But its not so many that I can't teach my students, just that its a bit more awkward and we're a bit slower. We make it through the day.

Because I swapped places I'm expected to get my students here somehow. How do I do that? I ask. I'm told there's the phone to the office or something. I don't understand. I look at my list and have names and locations. I ask what to say. She explains something about asking for locations and students and I don't understand what to say. I try to get it clarified but its still confusing. She moves onto something else. I do everything I can to make it easier to do our work, but run out of things to prepare. I need my students. I go over and pick up the phone. I say hello. There's someone there. What do I say. I don't know. I'm confused. I try to ask the person in the room again, and I still can't figure out what's meant. I try to explain what I need and it doesn't make sense. I try again. It still doesn't work. I directly say what it is I need to tell them, that I have students in rooms and I need them here and I don't know how to get them here. They ask for what rooms and what students, I tell them, and get my students. Now I can do my work. I know how to work with students. Not how to do these phone things these are weird and complicated.

I go back to the hallways, flapping my hands, running them along the walls. I re-orient myself here. Make myself understand what is going on. Then back to my students. Teaching them makes sense, if I only I can get through the rest of the day.

All the parts

Communication is hard.

Think about all you need to do. You need to figure out what you want to say. You need to think about how to say it. What words to use. Where the emphasis goes; breaks, and pauses, and points of forceful emotions. You need to think about what ideas there are associated with those words; all of them, not just the ones you want. Do you want those? You need to think about ups and downs. And you need to think about other people, what will they do what will they think?

People are confusing.

Do they know the words that I'm wanting to use? Do they have other connotations, other implications, to the phrases than I do? They haven't had my experiences - I know that. Can they understand my explanations, with the feelings that go along - the struggles, the excitement, the fear, the joy - all just from the phrases chosen to express what I'm attempting to convey?

Why are they annoyed? Why are they asking these questions? Why are they saying these things? Why do they act in these ways that make no sense? I want sense. Sense of the world around me. These things these people are doing do not fit in any understanding of the world I have.

Why? Why do they act in these ways? I need to try to figure it out, so that I can try to make them understand what I am trying to say. What I am trying to make them understand of my world, of my thoughts, of my experiences. I need to try to understand how these others think so I can try to make them think what I want them to, for at least the period of time of reading what I say. I need to understand. I need to understand, and how can you understand when you don't have that information, when you're missing pieces, when the pieces you have seem to contradict, when you have too many and too few at the same time?

There are so many parts.

Ideas to words. Words to phrases. Phrases to sentences and paragraphs and more. The pieces need to come together smoothly, the words do, when you're writing. But the ideas need to as well. The way you communicate, the way you shift focus, and emphasize, and the way you draw attention with both the word choice and the structure on the page.

Bits and pieces, all piling up to make something larger. How does it work? We understand it, but can we understand what we want it to be? Are we predicting properly? Are the bits the right bits and the pieces the right pieces? Are our ideas being too tied up in our experiences to be understood?

Letters to words, the page fills. But what do these squiggles mean?