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chaos on wheels!

@chaos-on-wheels

chaos | they/them | 20 | polyfrag plural system | nonspeaking autistic with autistic catatonia | POTS and ME/CFS haver | aac and wheelchair user | C-PTSD haver | medium-high support needs | currently homeless | emoji tags are used to indicate headmates | our ability to use and process words fluctuates based on a variety of factors including who is fronting and how bad our brain fog is, please don't make a big deal about it | mutuals dm for discord username

decided it was finally time to make a formal intro post

collective name: chaos

collective pronouns: they/them

body age: 20

conditions: nonspeaking autism with autistic catatonia, POTS, ME/CFS, C-PTSD (these aren't our only conditions but they're the ones we feel are relevant)

we were fully speaking as a child but developed autistic catatonia as a result of being put on an atypical antipsychotic as a teenager. it was a very low dose for "mood stabilization" but we were kept on atypical antipsychotics for four years despite our complaints and showing studies that linked antipsychotic medications to the onset of autistic catatonia in some autistic people, and explaining that we were experiencing onset symptoms of autistic catatonia. we're off those medications now but still have significantly reduced skills in many areas, including executive function, sensory regulation, and most notably we seem to have developed severe speech apraxia. we can say some words sometimes when we aren't thinking about it, but they're rarely in any sort of appropriate context and virtually never what we mean. we can make noises and word approximations but our mouth refuses to cooperate with actual words. our ability to sing songs we know is virtually unaffected for some reason?

sometime around the ages of 11-13 we developed symptoms of POTS and ME/CFS. we were repeatedly and routinely forced to push through PEM which made our ME/CFS significantly worse. we live in extreme levels of pain and use a manual wheelchair. we are hoping to upgrade to an electric wheelchair when possible.

boundaries:

no formal dni but we block liberally.

we self identify as a faggot, a tranny, a cripple, and a transsexual. please don't tag any of our posts with tw _ slur. tagging with some variation of "reclaimed slur" is fine. queer is not a slur

we tend to block a lot of blogs of nonverbal/nonspeaking high support needs autistics because we're really heavily triggered by some of the discourse around the terms nonverbal/nonspeaking. to be clear, those terms are only for people who are permanently or likely permanently unable to speak, and you do not "go nonverbal" you lose speech. we just personally are uncomfortable with seeing lots of discussion about it. if we block you for this reason it's not anything you did wrong.

if you are pro-aba or neutral towards it we will block you. we are an aba survivor.

please don't flirt with us even as a joke or "platonically," it makes us uncomfortable. especially if you're a minor

please feel free to add image descriptions to our posts, we will reblog them with the image descriptions added and add them to the original post. we basically never add them ourselves because it's really mentally taxing for us but we do want everyone to be able to access our blog

system info under the read more

hey don't cry. 7,401 species of frog in the world, ok?

IMPORTANT UPDATE: 7,532 species of frog in the world, ok?!

great news! 7,556 species of frog in the world, ok?!

hey don't cry, now there are 7,576 species of frog in the world, ok?!

excellent news! 7,591 species of frog in the world, peace and love on planet earth

guess what! 7,624 species of frog on planet earth, ok?

hey don't cry, 7,645 species of frog on planet earth, ok? peace and love on planet autism

inside you, young transmasculine person, is a voice that will tell you not to like certain things because they're For Girls. that is the voice of the devil, and you must never listen to it.

for those that need it:

inside you, young transfeminine person, is a voice that will tell you not to like certain things because they're Too Manly. that is the voice of the devil, and you must never listen to it.

for the nonbinaries out there:

inside you, young human, is a heart. Also probably a gallbladder, two kidneys, a liver, and some ribs. Keep them inside you, unless they mutiny and attempt to fabricate your demise. Even then, let a licensed medical professional handle the removal of your angry organ(s).

really irritates me when people learn that I cut and they're like "noooooo don't do that find a healthier coping mechanism" like

I have very little autonomy, agency, resources, or control over literally anything in my life right now, and I've never had much to begin with. the likely best case scenario for me is to be placed in an assisted living facility, where I will NEVER have the same level of basic autonomy or control over my body and life that most people do.

I also have severe deep joint and muscle pain constantly that I do not get treatment for because I've yet to have a doctor take me seriously. they all assume because I'm young, homeless, and my x rays are normal, that I'm drug seeking, and therefore refuse to prescribe anything other than naproxen. which is an over the counter pain med. so it does jack shit. and I've been taking it since I was literally 13 so my stomach is fucked and I have constant acid reflux from it.

cutting is something I can choose, it's something I have control over. it changes my body in a way I can control, which means no one can remove the evidence that I got to make a choice (which is helpful since I'm in and out of mental hospitals due to my housing situation so everything else gets stripped from me including my mobility aids and communication devices). and it helps me manage my pain because surface level pain is a much easier pain for me to tolerate (as opposed to my normal muscle and joint pain) and the pain from the cuts every time I move distracts me from my normal pain that worsens with movement. it also makes me feel valid in being in pain because I have a visible wound on my body so of course I hurt.

I'm not anti recovery by any means, but I do deserve to have the option to choose if I want to recover personally. and right now, when I'm not getting help for the underlying issues (lack of autonomy and chronic pain), cutting is literally keeping me alive. having some choice and some way to cope with my chronic pain keeps me from making the decision to kill myself. and that's VALID.

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Wow this sucks I'm gonna kill *remembers that suicide jokes only worsen your mental health and that the first step to healing is stopping* you

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Wow this sucks I'm gonna kill *remembers that suicide jokes only worsen your mental health and that the thing weighing most on my mental health is the climate crisis and late stage capitalism* Darren Woods, CEO of ExxonMobil.

consider: teenagers aren’t apathetic about everything they’re just used to you shitting all over whatever they show excitement about

Teen: *gets a job*

“I GOT THE JOB!”

Parents: Well, when I was your age, I already had 5 jobs and was supporting my family

Teen: *gets all A’s*

“I worked really hard!”

Parents: Well, of course you did, this is the expectation, not a celebration.

probably why so many teens take to social media where they can enthusiastically share their interests and achievements and get positive feedback that their parents never gave

A LITTLE LOUDER FOR THE PEOPLE IN THE BACK

This hit hard

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I remember once, when I was in my early 20s, I was an afternoon supervisor at my job, and I worked with mostly teenagers, and the one day this one kid, who was like 15, was bored so I suggested he could clean out the fridge. He did and when he was done I said he did a good job.

After that, this kid was cleaning out the fridge at least once a week, and I was like, “why are you always cleaning the fridge?” Like, I didn’t mind, but it seemed odd. And he said, “one time I cleaned the fridge and you said I did a good job. I wanted to make you proud of me again.”

Literally, I changed the entire way I interacted with teenagers after that. I actually got a package of glitter stars and I would stick them on their nametags when they did a good job, and they loved it.

My manager had commented on how hard these kids work and I said, “they’re starved for positive feedback. They go to school all day then come to work all evening and no one appreciates it because it’s expected of them, but they’re still kids. They need positive feedback from adults in their lives.”

Like, everyone likes feeling appreciated. Everyone likes being complimented and having their efforts be noticed. Another coworker (who was a mother of teenage children), hated that I did this, and said they were too old to be rewarded with stickers, but like… it wasn’t about the stickers. The stickers were just a symbol that their effort was noticed and appreciated. I was just lucky that I learned this at a time when I was still young enough to remember what it was like to be a teenager. I was only 2 years out of highschool at that point and highschool is fucking hard. People forget this as they get older, but ask anyone and almost no one would ever want to go back and do it again, but they expect kids to suck it up because they’re young so they should be able to do school full time, plus homework, and work, and maintain a healthy social life, and sleep, and spend time with family, and do chores and help out at home, and worry about college and relationships and everything else, and then just get shit on all the time and treated like they’re lazy and entitled. And then they wonder why teenagers are apathetic.

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For a german exam I had to argue against an article that was essentially „kids these days, they don’t care about anything and are constantly on their phones“ and really it was the easiest essay I‘ve ever written.

Teens don’t talk to adults bc adults only ask „so, how‘s school“ to then interrupt them two sentences in. And because they can’t engage in a conversation about buying houses and working in a bank. I would’ve loved to talk about philosophy and politics and history with family the way I did with friends and in class but because I was young no one took what I had to say seriously.

And no, teens aren’t always on their phone. They’re on their phone when they’re bored. You think I‘m on social media when I‘m with my friends? When I‘m talking about something I‘m interested in?

Maybe the reason kids are so distant and always on their phone during family parties and the like is because you‘re failing to engage and include them.

Whoop there it is

When you respect kids, they really respond and learn from you. But if you treat kids like “theyre just a kid, what do they know??” then you’ll never find out.

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As a Disneyland Cast Member, I’ll add my own experience onto this –

Very frequently, when I first speak to a child while I’m at work, they’ll kind of withdraw and act uncomfortable and shy. Their parents will then rather frequently tell them to not be shy and try to coax them to talk to me – whenever that happens, I always, without fail, politely dissuade the parents from pressuring them.

“I’m a stranger,” I’ll tell the kid’s parents. “I don’t blame them for not talking to me – if they were anywhere else, they’d have the right idea, to not immediately trust me.”

I cannot tell you how many times I’ve seen that same kid – simply after hearing their initial reaction being validated, instead of reproached – immediately open up to me after that. I also cannot tell you how many times that child and I would go on to start a friggin’ marathon conversation, and I got to hear all about how great their day was or what their favorite Disney movies were or what rides they liked and didn’t like or how much they like a certain Disney character or song…all from me validating that initial feeling and showing genuine interest in what they had to say.

This isn’t just young children, either. I will always remember being positioned outside the Animation Academy one day and starting up a conversation with a young lady, perhaps 12 or 13, who joined the line with her father a full 25 minutes before the class was supposed to start. Now keep in mind, we do a drawing class every 30 minutes: there was no one else in line at that point, and no one else joined the girl and her father in line for a full fifteen minutes. So I could tell pretty quickly that this girl was very emotionally invested in getting a good spot for the drawing class: a conclusion all the more bolstered by the fact that she had a notebook under her arm. I asked her if she was an artist – she said yes, but seemed uncomfortable at the question, so I skipped even asking her if I could see her work, instead admitting that I myself wasn’t very good at art, but that I’m trying to get better and that I love the history of Disney animation. On the screens around us was video footage of different Disney concept art and animation reels, so I pointed one of them out (for Snow White) and asked if she knew the story behind the making of the movie. Upon confirming that she didn’t, I proceeded to get down on the floor so I could sit next to her and her father and dramatically tell the whole story of how “Uncle Walt” created the first full-length animated motion picture, even though everyone and their mother thought he was an idiot for even trying, and how the film ended up becoming the first Hollywood blockbuster. After the story was over, the girl’s father said that his daughter really wanted to be an animator when she grew up, and she finally felt comfortable enough to open her notebook and show me some of her artwork. It was wonderful! Every sketch had such character and you could tell how much work she put into it! And I could tell how much telling her that – and sharing that moment with her, where we got to connect over something we both really enjoyed – had meant. And after the class was over, she sought me out to show me what she and her father had drawn – and sure enough, hers was great! (Her father’s was too, really. XD)

People, kids and teens included, love sharing what they love and how they feel with others. You just have to give them the chance to show it.

A LITTLE LOUDER FOR THE PEOPLE IN THE BACK!

-~-

I feel like I am obliged to add one more thing: don’t ever think that the kids won’t feel your unspoken judgements cause they do!

I felt always like a ‘problem’ in my family, until I was about sixteen, I got this teacher who was litterally the first to tell I was worthy. He changed my life up till this day.

Also how do grown ups imagine how ‘we’ will ever learn to engage in conversations with adults properly if you don’t teach us?

This post is

Everything

I told one of my new coworkers (who is 26) that he was doing really well and that I was proud of him and his progress. I thought he was going to start crying for how quietly he said “really?”. 

Positive feedback makes the biggest difference to everything.

but seriously the fact that crosses are everywhere, EVERYWHERE, when these were essentially the guillotines of the roman era, sometimes complete with a dying man on them, and no one considers this messed up, is.... something else

the name of the town I live in literally means "the roman execution devices" like how is this not messed up

gayness and lesbianism are inherent parts of the bisexual experience. gayness and lesbianism are not exclusive identities that cannot exist alongside other types of attraction. gayness and lesbianism do not mean exclusively attracted to men or women. bisexuality does not exist outside of lesbianism and gayness, it encompasses and includes them. these terms are not and will never be mutually exclusive, they can be and are parts of the same experience.

My stage career began when I was a little under two months old, when I took the spotlight as Baby Jesus in a Christmas pageant. I’m told that I did a wonderful job and slept calmly through the whole thing, which can only speak to my talents as an actress, because I was 1. the wrong gender 2. a colicky screaming demon of a baby and 3. about as far from divine as it’s possible for an allegedly-human child to be. 

I continued to be actively involved in theater as a kid (and frequently played roles of various small animals, because I was tiny for my age). Around the age of ten, I was cast as the lead character in a musical about cowboys that I no longer remember the name of. It was my first real lead role, and I took it very, very seriously. And because I am myself, that means I maaaaybe went…a little overboard.

My character’s introduction was early in the play, accompanied by the crack of a bullwhip. This was more-or-less pre internet (or, at least, our director was not tech-savvy enough to find sound effects online) and we didn’t have a sound effect track for that noise. There were plans to acquire the appropriate sound effect before opening night, but I rapidly tired of making my entrance during rehearsals to the sound of someone yelling “BULLWHIP NOISE!”

This, I thought to myself, is a problem I can solve.

I learned early in life that it’s good to be friends with people who have skills; they always come in handy eventually.  After rehearsals one day, I put on my cowboy boots and biked a couple miles over to my friend Grace’s house. I went down to their basement and knocked on her older brother’s door.

“Hello,” I said. “I need to learn how to use a bullwhip.”

“….Okay,” he said. It did not seem to occur to him that he might ask further questions about why I, a tiny horrible munchkin composed exclusively of rage and pointy elbows, needed to be weaponized any further. Clearly, I had come to the right person.

My friend’s older brother would have been an SCA nerd, if SCA was a thing where we were. Instead, he was one of those unsupervised 4H kids with weird hobbies, largely oriented around ancient forms of combat. He was somewhere in his late teens at this time, and he liked to make stuff. It was an urge I, even at age ten, could sympathize with. His name was Aron. 

Aron got out his bullwhip (which I had noticed hanging on his wall on a prior visit, and had filed away mentally under a for future use tab) and we went to the backyard. 

“Step one of using a bullwhip,” Aron began, “Swinging the bullwhip.” 

We rapidly discovered that since I was god’s tiniest, angriest creation, a full-size bullwhip was way too long for me to use. Aron’s shins suffered for my attempt. 

“…Step one of using a bullwhip,” Aron said, “Making a bullwhip.”

So we went back inside, found a tanned cowhide (that he just…had? I don’t remember if there was a reason for this.) and some razor blades, and I learned how to cut and braid a bullwhip. It took a few tries, and I wound up coming back for a while, because I kept getting frustrated with the bullwhip-braiding process and Aron kept distracting me with bait like: “Hey kid, wanna learn to make some chainmail?” and “Hey kid, wanna fletch some arrows?” and “Hey kid, wanna try doing horseback archery?”

Obviously the answer to these questions was “BOY, WOULD I EVER!” Some delays are necessary to the artistic process.

(At one point my mom asked me “Hellen, what are you doing over at Grace’s house all the time?” And I, perfectly innocent, said, “Making weapons!” and my mother, who never understood why I was like this, but accepted that a girl has needs and those needs occasionally involve stocking a personal armory, said “Okay! Have fun!”)

Soon, the bullwhip, size extra small, was finished. The lessons on actual bullwhip use commenced. 

It should be noted that Aron was self-taught, and really had no idea what to do, so this was mostly an exercise in the two of us standing twenty feet apart and flailing wildly with our respective whips until snapping noises happened. And then we figured out what we’d done to make the snapping noises. And then we kept doing that. Extremely vigorously. So vigorously that at one point one of the bullwhips launched into the air and caught on a tree branch and we hand to drag the trampoline over so Aron could bounce me high enough to grab it. But we persisted!

Eventually we reached a point where we could line up pop cans on a fence rail and hit them off three times out of five.

Feeling extremely accomplished and like I finally understood method acting, I packed my bullwhip into my backpack for the next play rehearsal. Soon enough, it was time for me to make my entrance. 

I leaped on stage in my cowboy boots and cracked the bullwhip as hard as I could, immediately launching into the song despite the fact that the sound of five feet of braided leather breaking sound barrier had startled the accompanist so badly she’d keysmashed on the piano.

The director shouted something she probably shouldn’t have shouted in a room full of small children, and then demanded, “WHERE DID YOU GET THAT!”

“I made it!” I declared proudly. “I’m a cowgirl! I can make my own bullwhip noise!”

“You…made it?” 

“Yes! Because we needed a bullwhip sound effect. And bullwhips are where bullwhip sound effects come from!”

This was, of course, impeccable logic.

It is apparently difficult to argue with a gleeful ten year old who happens to be armed with a bullwhip longer than she is tall. After some negotiation, the director agreed that I could use my bullwhip for my opening song, provided that I didn’t pop it while anyone was anywhere near me on stage and I didn’t let anyone else play with it. These terms were acceptable to me. 

Somehow, no one was injured and the play went off without a hitch. We can only chalk up these things to the magic of the theatre. 

Nearly a decade later, an unsuspecting college classmate asked me, “Hellen, wanna take a class on bullwhip combat with me?”

And obviously I answered, “BOY, WOULD I EVER!”