#deep focus for my own neurodiverse brain

[selfdiscoverymedia]

MH24-16. Dr. Sean Botha “The Listen Program”

Mental Health Awareness with Sara Troy and her guest Dr Sean Botha, on air from April 16th My PhD research into sound and “silence” meant analyzing music using deep listening practices and in the process, I created a new analysis model for musicians. Whilst doing this I created “The Listen Program” because I noticed how in-depth my own listening process became. Without realizing I was creating…

[enthusispastic]

so what do you teach? why did you choose it? how did you get there? what do you love/hate about it? i’m also a teacher (preschool) trying to figure out my path

I currently teach mostly middle school science, though I have also taught high school biology and other life/earth sciences and high school theater and speech. I chose these subjects because I love them deeply. I chose to teach middle school and high school because teenagers are really cool people and working with them is very rewarding to me. They can connect with the subject on a deep and amazing level and can connect between subjects in a really cool way. Plus they're just cool and fun and funny.

I got into teaching in a really conventional way. I went to college for education and got my BS in secondary ed in my subjects. I was already planning to do science, but I got into theater during college and added that one later in my college career. Since I went to a religious school and started my career in religious private school, they had a call/placement program and that's how I got my first job. After stuff at my first school got shitty and we moved back to my wife's hometown, I applied to my current school and got the job because my arts background set me apart for their program (arts integration focus).

I LOVE working with kids. It's an energy drain to be sure, but the everyday functions of teaching lessons, organizing labs, working with students, and heck even grading are all somewhere between fine and awesome. If that was all there was I'd love it. My current school has a huge community of neurodiverse kids and nerds of every stripe and staying connected to a community of young neurodiverse, queer, and artsy nerd kids by default of the job is heartwarming to say the least. I love seeing kids grow, and the "lightbulb" moments almost make me feel like maybe I don't want to quit at the end of this year. But...

I CANNOT continue teaching though, because that's not all there is. Important and necessary functions of the job that are extraneous to classroom teaching pull me down so bad. I can't keep up with lesson plan documentation, differentiation documentation, constant staff meetings, IEP/504 meetings that pull me out of class, curriculum development, politely kissing admin ass (moreso at my last school than current) to keep my job safe, dealing with parent demands and complaints, keeping up school communication culture, preparing materials for various conferences and showcases, attending school events to "support a culture of school spirit" and every other thing that teaching does to eat your life whole. My disability (ADHD) definitely plays a part here, but even if I did have a typical brain, teaching is a career where you have to give up your own life and individuality, and do it for an audience of people who are VERY often not remotely grateful for it, or only performatively grateful one/two weeks per year. Admin and parents all want to tell teachers how to do their jobs despite limited or no experience, and that's another kind of exhausting. Kids may be cool, but they're also people who are learning their social stuff, and a lot of times that means that they don't know how to be kind or respectful or decent to teachers. I try to be patient and respectful about it and guide them to understanding, but through no fault of the kids' that is not something that a teacher can do 5 days a week for months and not feel like we're dying.

Anyway I hope that helps you. It certainly helped me to put it all out there.

[phoenixbrainvomit]

Introduction

Disclaimer, I am human presenting. I am afraid of making mistakes and not having the best structure when writing. I want a space where I feel relaxed enough to allow my brain to vomit without worrying if I have backed up all of my theories with facts and figures. Ideally it's a good practice to go by, however sometimes one is just on a roll and doesn't have the strength to interrupt a free flow state of writing.

Please do forgive any future mistakes to be made.

Who am I? A spec of magical dust, someone who cares about the world, people and animals, but still trying to understand my place in society and where I should place my efforts that would actually help any cause. My current obsession is revisiting the past Doctor Who series/episodes and getting my life advice, understanding of life and supporting my own theories with quotes from the Doctor. If I didn't know any better I'd think Doctor Who takes a form of God just like thousands of demigods and deities that people worship worldwide.

Just a little expected self loathing/ hatred. I am chronically late to everything. I am a slow learner in the sense I have to understand the fundamentals of things before starting to comprehend the current situation at hand. When I focus on something, I tend to give it my 90%. 10% goes to self care if I'm lucky enough and everything else in my life including responsibilities? Out of the window. I enter these horrific cycles of feeling overwhelmed and then freezing as I don't know where to stand to get myself out of the rut.

I have a slight inkling that I am on the neurodiverse spectrum. I have no time for people that automatically respond with, "EvEryOnE iS." "ItS NoRmAl". I'm sorry but if it was fucking normal I would surely be neurotypical and bossing life right now, because I am fudging fantastic. And those wanks that tend to respond like that are my family members, and I'm patiently waiting for them to hear the penny drop and for them to understand they're not neurotypical either.

Even if they were or were not. It doesn't give them the right to brush off what I'm saying. If they knew how to care properly, they would just fucking LISTEN and make space for me sharing my shit.

This is why I need God. They're the only being that is genuinely there with me throughout all moments from conception to decay. My limitless ear to natter to. I can only ask that they never forget me and never leave my side.

So I wasn't expecting that for an intro, I don't read much, unless I'm going on a deep dive into something with the purpose to learn something specific. I haven't read many blogs. I don't know if this will ever get any traction or interest.

If someone is reading however, I'd like to say Hello! And Welcome!

Lets fucking go!

[a-small-batch-of-dragons]

Just Ask

Prompts: Hey… So, I was wondering if you could write a fic where one of the sides are dyslexic? Since that usually just ends as "Oh, I can't read, oh no!" and not like the actual neurodiversity it is. Yes, I admit, I want to relate to one too, but… Well. It'd be awesome if you would, but if that's too tall an order or too specific that's fine too. If you do, though, maybe college AU with roceit? -anon

Hi you're amazing! I love your writing and brand of writing and just I've read a lot of your stories and I love them all kskejejwuwugfhsv-

I was wondering, if you take requests, that maybe you could write a human AU with fake dating Roceit? With confident fat Janus because we need that! Or not, that's your choice!

(I sound like some snob asking for a highly specific coffee shi-) - anon

oh babe y'all wanted to be FED huh

Read on Ao3

Warnings: slight ableist/fatphobic language

Pairings: roceit

Word Count: 2487

Sometimes, you can get all of your work done in the library. Sometimes, people are ableists.

And sometimes there's something wonderful in finding out there's someone there for you as well.

Roman scrubs his hands over his face and sighs. Between waiting ages at the printer or absolutely destroying his retinas by staring at a screen for hours on end, he isn’t unhappy with making the choice to save the environment by using less paper but god.

“At least this pdf was convertible,” he mutters, scrolling down to see how many pages he has left. The last four weren’t and reading without the right font is a fucking pain in the ass.

Seven pages left. Great.

Roman focuses on the screen and starts to mutter under his breath again. Focus on the word, figure it out, make the sentence, move on. Pause to take notes, make sure it’s legible to read later, and repeat.

A computer and heavy bag thuds onto the table next to him and he jumps, almost knocking his coffee over. He looks up, glaring at the person who stares down their nose at him like he’s some sort of stain. Rude.

“You’ve been here for like, three hours, dude,” they say, like that’s supposed to justify their behavior, “move. I need this spot.”

Roman looks around. There’s like, four more tables open. “Can’t you just go sit somewhere else?”

“No! This is my spot! You can go sit somewhere else.”

“Well,” Roman mutters, glaring at his screen again, “I was here first. So you can either wait until I’m done or sit down.”

“Dude, I swear—“

“Excuse me,” comes a smooth voice that has no business being this polished in the fucking library, “is this person bothering you, sweetie?”

Roman turns around and his mouth drops open.

“J-Janus?”

Janus raises an eyebrow, crossing his arms and glaring at the dick with the heavy bag. Who, as a matter of fact, seems to be muttering and stuffing shit back into said bag.

“Sorry I’m late,” Janus drawls, still sounding way too confident and way too much like he knows what’s going on, “got held up after class.”

“Uh, no problem,” he mumbles, glancing over his shoulder to see the asshole is still standing there, “just, um…working.”

“Ah, well then, you won’t mind if I join you.” And with that, Janus sits down with a flourish, propping his chin up on his hand and fixing the asshole with an impressive look of disgust. “And you…you can leave.”

“Look, buddy—“

“My partner and I have work to do,” Janus says, swiftly cutting them off and making sure Roman has no idea what’s going on, “now leave.”

Roman’s really glad there was no ambiguity that Janus could’ve been talking to him, because he’s about ready to bolt. Only when the asshole has retreated does Janus turn his gaze to him.

“Sorry about that,” he says, flicking a speck of imaginary lint from his gloves, “he seemed like he was bothering you. Thanks for playing along.”

“Oh, uh, no, I’m, uh—“ Janus raises an eyebrow as Roman stumbles over his words— “sorry. Uh, thanks?”

Janus chuckles. “Oh, no worries, sweetie. I was happy to do it. Although…”

Janus squints at him and Roman fights the urge to squirm under that gaze.

“You’re in my seminar class, aren’t you?” Roman nods. “The one that let out three hours ago?”

“Yeah, uh-huh.”

“Have you…been here since then?”

Roman nods, trying to get back to work and, you know, maybe get out of here, only for Janus to reach across the table and still his hands as he goes to pick up the pen again.

“Have you eaten?”

“What?”

“Eaten,” Janus says slowly, mouth stretching into a smile, “lunch, sweetie.”

“Uh—“ no, is the correct answer— “I was going to?”

Janus just gives him a look.

“…no.”

“Mm.” Janus glances at his computer and notebook. “You’re not by any chance attempting to read all of the assignments in one go, are you?”

Roman’s guilty flush seems to answer that question for him. Janus sighs and it’s such an odd mixture of disappointment and fondness Roman hasn’t earned that his brain spits out the only question he actually wants an answer to.

“Why are you here?”

Janus chuckles. “In the library, at this school, or are we already to the point of questioning the very nature of existence?”

Roman just blinks at him.

“Oh, relax, sweetie, I’m teasing.” Janus glances off in the vague direction the asshole wandered off to. He leans a little closer. “I know how…difficult it can be to try and do work when they bother you.”

Roman’s cheeks flush. “Oh, uh…thanks, then.”

Janus waves a hand. “It’s none of their business why you’re doing so much work at once. Even if it does make you skip lunch,” he adds with such a pointed look that Roman can’t help splutter.

“I was going to! And you’re not my mother!”

“No,” Janus purrs, “but like any good partner, I like to make sure my sweetie takes care of themselves.”

Roman does not squeak, despite Janus’s chuckles, but he does start to fiddle with his pen. “I can’t…stop yet.”

“Why ever not?”

“Can you stop,” Roman blurts, scrubbing his hands over his blushing face, “please? For like, two seconds?”

“Sorry, you’re just adorable.”

“Stop, dude, seriously, if you want an actual answer to the question?”

“I’m done,” Janus chuckles, “I’m done, sorry.”

Roman takes a deep breath. He fiddles with the pen. “It’s just—with my dyslexia, it takes a while to…find the, um…”

“Zone?”

“…sure.”

Janus hums in understanding. Then he reaches into his own bag and pulls out a book of his own. “Then we may as well work together until you’re finished.”

Roman blinks. Hi, hello, brain is confused, what just happened in the last five minutes?

Janus waves a hand in front of his face. “Hello? Sweetie? You okay?”

“Sorry, I’m just—trying to process what happened.” Roman blinks again. “Because it seems like some asshole tried to take my seat, you came up and pretended to be my partner to scare them away, proceeded to badger me about taking care of myself, and now you’re…still here?”

Janus nods. “That’s how I experienced it too, that’s correct.”

“…so now what’re we doing?”

“Well, I’m also going to try and get some work done, you’re going to finish your work, and then we’re going to get lunch.”

“And what about the dude that now thinks we’re partners?”

Janus looks at him and shrugs. “I’m game if you are.”

Roman blinks again. Is…Janus suggesting they fake being in a relationship to, what, defend Roman’s right to sit wherever the fuck he wants for however long in a library?

“What’s in it for you?”

“Pardon?”

“You heard me,” Roman says, “what’s in it for you?”

Janus’s fingers still on the book he’s pulled out. He sighs and looks up at Roman.

“How long have you known about your dyslexia?”

Jumping around a bit here, aren’t we? “About six years, why?”

“And you know how to manage it? For you?”

“Uh, yeah, why?”

“That doesn’t mean it goes away,” Janus says softly, “it’s still work, you just…know how to do it now.”

“Yeah, it still takes me time to do things, why—“ Roman’s eyes widen— “oh. Oh, wait, you mean—wait, what do they have against you?”

Janus’s mouth tugs up into a smirk. “How sweet.”

“Shut up,” Roman mumbles, “you know what I mean.”

Janus just winks at him before sobering. “Well,” he says wryly, gesturing at himself, “surely you can understand that…not everyone treats you very well when you aren’t the circumference of a toothpick.”

Oh. They’re those kind of assholes. Something Janus chuckles about when that thought gets out before Roman can stop them.

“Quite. I can manage them, but it’s still work.” He looks at Roman. “Maybe we can split the load?”

“I’m down with that.”

“Wonderful. Now,” Janus says, mock sternly, “get back to work. We have lunch to get.”

Roman chuckles. “Sure, sure, don’t ask to borrow my notes.”

“I would never, I just forget things like a cool person and make things up that the professor likes to hear.”

Yeah, this is gonna go just fine.

As it turns out, it does. Roman won’t lie, he was…skeptical about the viability of this plan of theirs. He’s read the stories. He knows how this works. He knows about the misunderstandings and whether it’s a bet or a dare, something goes wrong.

But…nothing does.

Watching Janus tear anyone to shreds is entertaining enough in class, where Roman gives up on taking debate notes and just watches because goddamn, but when he gets to stand there and just glare at some ableist while Janus verbally decimates them? Poetic cinema. He debates sneaking some popcorn into his jacket pocket but that would take away from the power of his glare.

And it is nice to have someone else do the work of glaring assholes away from his table when he’s working on reading. He would be lying if he said that actually having someone else to talk to isn’t part of it. It’s so much easier to keep track of where he’s messing up so he can focus on it during his exercises later.

“You know,” Janus remarks as they leave the library one day, “you can ask the professors for editable pdfs.”

“Huh?”

“For your font stuff.” Janus nods toward his backpack. “I know you like to change the font so you can read it better, most of them have editable copies of the materials.”

“Not for the eBooks and scans and stuff.”

Janus huffs, waving his hand. “How do you think they get the audio transcripts for the recorded versions? They have to transcribe it anyway, just ask for those.”

Roman stops. “How…how do you know those exist?”

Janus just taps the side of his nose and winks.

“Can…can you do that?”

“Of course.” Janus links his arm through Roman’s. “Anything for you.”

That shouldn’t do what it does to Roman’s chest.

Because yeah, okay, maybe Janus is…really cute.

Like, unfairly cute.

No one should be able to rock that hat all the time. And the gloves. And the pocket watch. And the curly hair. And the attitude. And the impressive vocabulary. And the razor-sharp wit. And he actually knows how to flirt! What is flirting? All Roman knows is Gay Panic™ and Suffering™. What is this? Why is it allowed?

And why, oh why, did Janus have to be the one that started the fake-dating idea?

Because here’s the thing. It would be so easy to just be friends with Janus. It would! They’re already friends now, fake-dating kind of does that to you. And Janus, despite what he wants everyone else to believe, is a fucking dork. His actual laugh is squeaky and bubbly and ugh, Roman could drown in it. And he’s really kind. It’s not the same breed of kind that Roman’s used to, but goddamn, Janus is so sweet when he lets himself be. And it’s been so long since Roman had like, an actual friend…

But it would also be so easy to be more than friends with Janus. To actually be able to take him out for dates and not just lunch at their janky cafeteria. To be able to spend time together that isn’t just for show, or platonic, or just hanging out ranting about stupid dead supposed-to-be-smart people.

Again, Roman’s read the stories. He knows how this is supposed to go.

So when he takes a little longer to pack up one day, enough that Janus notices and eases himself back down into his seat with a soft, real, ‘what’s wrong, sweetie, let me help,’ Roman prepares the bittersweet ‘nothing, I’m fine,’ and to swallow down everything real.

But instead…

“Can we, um, actually date?”

Janus blinks. “Come again, sweetie?”

Roman fiddles with the buckle on his bag. “I, um, I really appreciate what we’ve been doing, and I, um, I’m super happy being your friend…”

“The feeling is mutual.”

“…but I, um—“ god, why are words so hard?— “I think I would actually like to try…dating you. For real.”

He peeks up nervously at Janus.

“Is…is that okay?”

Janus sits there, silent. He blinks a few times. Then a slow, real smile spreads across his face.

“Roman,” he says softly, almost too quiet, even in the hush of the library, “why do you think I proposed this idea in the first place?”

Oh.

Oh.

Roman blinks. “Wait, you—you?”

A pretty flush covers Janus’s face. “Well, I…was planning to ask you normally, but then I saw you being absolutely tormented and…panicked.”

“You panicked?”

He throws his hands up. “Well, what was I supposed to do? The most gorgeous person in my seminar was being bullied and I was supposed to just let it happen?”

Wait. Back up. Roman is what?

“And yes, maybe I...wanted an excuse to be your friend first, but as I said, I panicked and so—“

“You—wait, you think I’m pretty?”

Janus stops, mouth open, before he’s scoffing. “Roman, have you seen yourself?”

“Uh—“

“At least you’re pretty,” Janus mutters under his breath, “pretty and dumb, but pretty.”

“Hey!”

“You can be big of brain and dumb of ass at the same time, sweetie.”

“Oh, says the man whose idea was to fake-date me because you wanted to actually ask me out!”

“I will not be lectured on dramatics from a theater kid.”

“That’s ex-theater kid to you.”

“Oh, you know once you go, you never come back.”

Roman giggles. Then he’s laughing. Janus joins in and oh, this is much better than shoving feelings down and pretending they don’t exist.

“You’re such a fucking dork.”

“No,” Janus purrs, reaching over to boop the end of Roman’s nose, “I’m your fucking dork.”

Oh. Oh, that sounds…really good. Roman’s chest is really warm now, when did that happen? Janus smiles too.

“So…dinner?”

“You’re paying.”

“I’ll pick you up at six.”

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[spectrumed]

4. body

Do I have body issues? Well... yeah. Who doesn’t? I absolutely do not like being fat, that’s something I’d change about me. And I probably should bulk up a little, go to the gym. My diet isn’t terrible, I don’t eat any fast food, but I could still always eat healthier. More greens, less beans. But most of all, my biggest body issue is that I don’t really associate myself with my body. My mind feels disconnected from my body. The day scientists invent a way for us all to live as brains in jars on wheels, I’m there standing in line for a chance to become all cerebral. Being physical, it’s just so messy, so awkward, so uncomfortable. You feel pain, you feel embarrassment, you feel horny. Nothing good comes from having a body. If you were just a brain, you could go on thinking and calculating and just generally having a good mental time. Or you’d start feeling suffocated and trapped trying to move your limbs and realising that they have been all chopped off. Hmm… Maybe it’s more complicated than I initially thought.

I don’t understand people who enjoy physical activities. Let it be clear before we delve into this long rant of mine complaining about all things gymnastic, this is not particularly an autistic trait. In fact, there are plenty of autistic people who may excel as athletes, their drive and obsessive personality traits becoming quite useful in developing that discipline that is required to fully commit to becoming an all-star jock. Not all autistic people are reprehensible nerds. Some autistic people are actually quite sexy. Some even have abs. But that’s not me. That’s not my clan of autistic people. I like drawing maps. I like thinking about things. I like making cocktails. The only part of my physical body that I like to put strain on is my liver. Don’t make me go on a run. There isn’t an armchair in this world that I wouldn’t want to sit down in, even the ones that used to be owned by old chain-smokers that have that awful aroma that sneaks into your nostrils and makes you worry about second-hand lung cancer. Sitting is great. I like sitting. Also lying down. Lying down is good.

Am I lazy? No, I don’t think so. Maybe a little, but here’s the thing. I can’t control the things I obsess over. There’s a great deal of overlap between autism spectrum disorder and attention deficit disorder. If you’re reading this and you’re a fellow friend on the spectrum, you may have gotten diagnosed with both. One of those rare times in my life I have attended group therapy, more than half the group were diagnosed with both. I, however, am not. But seeing as the two conditions are so intertwined, it shouldn’t come as a surprise that a facet of autism involves difficulties in trying to focus on something, or even trying not to focus on something too hard. If you were to judge my tenacity, my ability to keep going, based solely on how I perform during physical tasks, you’d think I was the least resolute person on the planet. But then you’ll find me, some time later, staying up until four in the morning drawing another map. A map that’s really just a different take on another map that I drew earlier, that itself was a reworked version of a previous map that I drew but didn’t like, that actually began as a second iteration of one map I drew that was actually wholly different, that was based on a map of Europe but if Denmark never existed. How many maps have you drawn Fred? Why don’t you go mind your own business, you nosy ferret.

The DSM-5 (the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. You can think of it as something akin to a bible of psychology, which is definitely an inflammatory way to refer to it, but I’m gonna go with it! Because I’m a wildcard, and that’s just how I roll,) includes this section as part of its diagnostic criteria for autism spectrum disorder.

Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).

Now, I personally don’t relate to that at all. There’s nothing abnormal in my intense love for maps. The fact that maps aren’t as widely cherished as they ought to be is a fault of others, and I refuse to acknowledge that this may be a part of my character that could be perceived as quirky, or out of the ordinary. But, still, for the sake of argument, let’s presume that I can get, at times, excessively circumscribed. I’d like to say that I’ve only ever engaged in excessive circumscribing in my privacy away from onlookers, but I am afraid that I may have allowed some of my excessive circumscribing to happen in public. I definitely do apologise for that. I will try to do better in the future. But you never know when you’re about to experience some excessive circumscribing. The best you can do is keep it limited.

I don’t know how neurotypicals work. So, you don’t feel these kinds of obsessions? These moments of intense focus? These fixations? Then, you lack passion? Are you heartless? Soulless? Or are you just weak? Are you too feeble to hold steadfast working on a project all night long? To lose touch with your sense of hunger, your need for sleep, and all contact with any other human person? My fixations may come across as strange, but to me, your lack of fixations come across as bizarre. The world is endlessly fascinating. Have you never felt that compulsion to just fully immerse yourself in a topic that allows you to forget about your physical body for just that moment in time? The body cannot hold me. I wish to absorb as much information as I can. If I could astral project, by gods, I would astral project. To decouple your consciousness from your mushy brain for just that little bit, to go soaring across the landscapes, to explore the cosmos, just free of all things corporeal, that would be swell. How terrible isn’t it, when you’re deep in research, learning all about the mystical religious practices of the long-dead hierophants of the ancient world, to be drawn back into the present by the sudden need to urinate? There is something so dreadfully mundane about possessing a human body. If only we could all be celestial beings allowed to just be without the biological needs associated with having flesh and blood and bone and bladders.

I am not religious, nor am I spiritual. I do not believe that there is an immaterial world that lies above the material. I do not believe there is an astral plane. I think that one of the terrifying things about living is knowing that we do not possess such a thing as an eternal soul, that all things are temporal, and that ultimately, we have to come to terms with that. It’s not so terrible. In some ways, the temporal nature of life can be its biggest blessing. All things must pass. Sure, that does include the good times, like that vacation you spent as a child wishing that it would never end. But it also includes the bad times. The heartbreak you feel from a failed relationship. The grief you feel after the passing of a parent. The depression some of us are burdened with. Some days are worse than others. But they too will pass. One of the remarkable things about the human body is its ability to bounce back from injury. To change and evolve in ways we sometimes find unthinkable. The brain, likewise, is transformational, capable of incredible developments. We’re not fixed in stone. We’re not eternal. Which is a good thing. It is what allows recuperation and progress. I should be thankful to my body for being there, even when I’m not. After all, isn’t your body your temple?

I am able-bodied. Am I disabled? There’s naturally a lot of questions that surround how we ought to understand mental illness or neurodiversity in regards to disability. Does autism spectrum disorder count as a disability? Well, yes, it can be considered a learning disability. It is certainly something of a handicap, you are experiencing struggles that most people don’t experience. But to your average layperson, your typical dullard who spends their time watching reality TV, drinking beer, and being happy, what counts as a disability to them? Would they see me and think I was disabled? I’m not in a wheelchair. I don’t walk with a cane. Though I will occasionally “stim,” make small repetitive moments with my hands or legs, I do not exhibit any kind of physical symptoms. If I told them that I was disabled, they’d scoff and tell me that I’m just making it up for attention. They’d say I’m probably just trying to mooch off the government, scoring welfare checks while doing nothing to contribute to society. I’ve got all my limbs. I am not sickly. I am actually quite strong, due to being a big and tall man, I am able to carry quite the load. So, I have no reason to not be a fully productive member of society, right? And yet, here I am, feeling at most times utterly perplexed by anything physical. Probably because I am just lazy, right?

I don’t think laziness is a thing. What is laziness supposed to actually be? Tiredness? If a person is perpetually tired, then they’ve likely got a sleep disorder. To call them lazy would be callous. There are plenty of overworked people that get called lazy, especially by tyrannical overseers who think of their charges as mere workhorses whose only purpose in life is to toil away in the factory until the day they die. Intolerable parents who see their terminally sullen child and instead of wondering what is making them so upset decide to deride them for their lack of ambition. Are you lazy when you are procrastinating? No you are just being a tad irresponsible, maybe, deciding to skip out on chores in order to play video games or masturbate. But you’re not just doing nothing. People generally don’t enjoy doing nothing. We need something to occupy ourselves, to fill that vacuum we all feel whenever we’re just sitting still. I am someone who appears to be comfortable just sitting still, but that’s because I’ve learned, since a very young age, to entertain myself with my own thoughts. To fantasise, to daydream, to do anything I can to escape from the void that is doing absolutely nothing. Boredom, that’s terrible. Boredom is existential dread. Of all the motivations that drive humans, love, spite, jealousy, or pride, I think the need to evade boredom is one of the most prevalent. Humans would rather experience electric shocks than sit alone in a room being bored.

I am not lazy, I am merely… excessively circumscribed. For as much as this may be a specific diagnostic criteria for autism spectrum disorder, I think it is also a common trait amongst all humans. There will always be within us a pull to do something other than the thing that we’re really supposed to be doing, that does not make us lazy, that just makes us terrified of boredom. Sure, you know that you’re supposed to mow the lawn, but that's just so dreadfully tedious, you just would rather be working on perfecting your new stand-up comedy routine. Thinking up jokes to tell on stage is so much more stimulating than cutting grass. And who cares if your lawn grows a little wild? Lawns are a scam, imposed by fascists to make us think grass in its natural state is ugly. All grass is beautiful, whether it is cut short or it is allowed to grow long. Do the thing that fulfils you. Allow yourself to become immersed in passion, to forget about those things that hold you back, the little silly things we’ve convinced ourselves is important. Stay up late, if you wish. You’re gonna kill it on open mic night, bud!

Yes, it is a problem when your obsessions grow so singular that you forget to feed yourself. When you forget personal hygiene, when you become trapped in your own apartment looking like some feral rodent caught in a cage. Like always, the key is moderation, and I know that from time to time, you may have to entertain a boring task or two. Clean your room, brush your teeth, trim your pubic hair, try to give an impression that you are taking care of yourself. If for anyone, do it for your mother. She will be happy seeing you looking like a civilised individual, wearing clean clothes and not looking malnourished. But don’t ever chastise yourself for being lazy. Laziness is a sin that we’re all guilty of, and if we’re all guilty of it, is it really a sin? Or is it just part of what it means to be a human? To be a messy creature made out of flesh and blood and bone and the occasional bladder. In the end, I’m more happy than displeased at having a body. It’d be much harder to type on a keyboard if I didn’t have fingers.

Still, I wish I wasn’t fat.

[willowashmaple]

my journey out of ‘sisterhood,’ three years on.

Almost two years ago, I wrote a rather lengthy critique of women’s movement and spaces, the female lifestyle empowerment brands, and feminism in general, closing it with this sentence: “No thanks. Count me out of your so-called sisterhood. I’m not interested in your culturally-appropriated ‘goddess’ circles and self-exalting ‘rituals.’ I’m not one of you.”

The gist of it, the tl;dr version is this:

People are divided more by race and class than being united by the biological accident of sex.

Much of what passes for feminism promotes a fantasy of a “global sisterhood” which sugarcoats the insidious problems that keep the affluent white women in the Global North in their positions of privilege while maintaining the oppressive system that dehumanizes and marginalizes the others.

The female lifestyle empowerment subculture, a multi-billion-dollar industry consisting of self-appointed coaches, spiritual teachers, practitioners, influencers, and businesses, capitalizes on cultural appropriation, ableism, classism, and reinforcement of a heteronormative and sexist gender stereotyping, while their fantasy of “the sisterhood” absolves all females of responsibilities and criticism.

Then I concluded, “About a year ago [2018], I made a conscious decision to remove myself from all women-only groups and organizations that I was part of. This was a difficult decision that I did not make lightly, and to a degree, a painful choice because I was part of them for the majority of my adult life. I made quite a few friends through such groups, and at times, they were the only social outlet that I had. But I could no longer keep participating in women-only spaces with a good conscience.”

I wrote this, at the time, in a more or less political language heavy on theories and critique of praxis. I did not, however, discuss what has been going on in my own life personally as it was not my intention or focus at the time.

During much of the previous decade [2010s], I was involved with several women-only organizing spaces -- many of them political, several of them religious. I used to think of myself as a feminist and I uncritically subscribed to the notion of “sisterhood” and all the emotional stuff that came with it. The more I spent time with them the more I found myself increasingly frustrated and ultimately had an awakening: I could not at all relate to women, or their experiences, or their emotions -- what the fuck was I doing.

Partially out of disillusionment, and partly out of disgust and anger, I decided about three years ago that I am nonbinary and therefore free from all that shit.

What I did not understand back then, however, was how neurodivergence informs and shapes who I am far more profoundly than I knew at the time.

Three years ago, I was falsely led to believe in the now largely debunked hypothesis by British neurologist Simon Baron Cohen (a relative of Sacha Baron Cohen, by the way) that autism is a product of an “extreme male brain.”

Maybe that’s why I could not relate to women, I concluded then, and basically gave up on feminism and myself alike.

But that didn’t exactly mean I could understand or relate to men, either. If I were, probably I could’ve felt right at home in the company of “extreme males” (imagine Proud Boys and the likes).

Since then, my understanding of neurodiversity has deepened, thanks to the increased interaction with other autistic people of all genders and sexualities.

I’ve learned that autistic folks generally communicate well with one another and can relate to one another, in the same way how neurotypical folks do among themselves (the phenomenon known as “double empathy”). As I look back, some of the most enjoyable and memorable moments were when I spent time with another autistic individual (even though at the time I was in deep denial about it).

Another thing I have learned since then was there is a huge proportion of the autistic community that exist outside the gender binary (in addition to the disproportionately high percentage of the autistic community that is also LGBTQ+ in comparison with the neurotypical population). Because the lived neurodivergent experiences generally do not align well with the conventional social construct of binary gender and heteronormative ideas of sexuality, there is even a word for it: gendervague, likely coined by activist and lawyer Lydia X. Z. Brown. 

Not knowing these, I had beaten myself up rather severely for a couple of years because I felt like such a freak and failed human being. I was nonbinary not because I was proud of it but rather as a consolation prize of a sort. I was having a combination of self-loathing, identity crisis, enormous dysphoria, shame, and regret. Combined with the massive autistic burnout that I was experiencing for unrelated reasons (and exacerbated by four years of President Trump Stress Disorder!), I became depressed, anxious, and withdrawn in a way I hadn’t been in many years.  

This also made me aware of how -- between all the misinformation and outright hate speech about neurodivergence, and my excessive exposure to peddlers of the self-improvement industry -- internalized ableism is extremely harmful, just as internalized racism and homophobia are.

[a-stitch-in-time-and-space]

Headcanon: Julian Bashir is autistic and has frequent sensory overload, and the only two people who can help him are Garek and O’ Brien. Me? Projecting? It’s more likely than you think!!!

Ha, moooood. Which on that note I have a somewhat intense fic here in which Julian has a meltdown. It’s not related to sensory issues so much as “oh boy a lot of shit’s happened to him” but if you want more O'Brien helping him out after this – so because we gave that fic to O'Brien, let’s give this one to Garak.

Also can we talk about the fact that it’s canon that Julian and the other augments can hear sounds at decibels that non-augments can’t and that it causes them pain, but Julian just taught himself to not react, like fuck, how did someone write this and not follow through on Julian-Bashir-is-autistic-and-or-otherwise-nd!

sorry for taking so long, a. this got a bit longish so it’s under a cut and b. I got distracted by the fact that I always want to see everyone’s notes on reblogs in case of interesting discussion points and i have just now learnt that that cannot be done easily if a lot of people reblog at once… oh hyper-fixation how you get me time and again

this takes place post-Doctor Bashir I Presume and alludes to the fact that during this time Garak and Bashir’s interactions were gradually stripped away in the show (because it too gay) - Andy Robinson ran with that in A Stitch In Time and had Garak write about how much he regretted the two of them not remaining close/hinted that he was in love with him… so take that background as you will.

—— More Space ——-

Thank goodness, he thought after an indeterminate amount of time. O'Brien was here. He would be able to calm him down, he would know how to come up with some soothing description of exactly which of DS9’s pistons or pipes or programs was currently making that noise and he’d either fix it or stay with him until it sorted itself out. Or maybe the noise was gone and the residual whining was just himself recreating it perfectly in his head, or maybe he was just too far gone by now for it to matter, but O'Brien would help. Since the two of them had become friends and some of Julian’s old ticks had returned after his augmentation had come to light, Miles had been a surprisingly steady presence in his life.

“Doctor?”

No, not Miles.

Garak.

He couldn’t make himself respond. His body felt like it was compressing him into a vice, with all his ability to focus somehow splintered into a million shards, each of them painful to the touch. Oh no, what if Garak touched him? If Garak touched him right now he might shatter or scream or something else entirely outside of his control, but talking was also impossible right now, so he couldn’t ask him not to touch, please don’t touch-

Garak sat down in front of him, far enough away that it didn’t feel like too… much.

“Doctor. You don’t need to say or do anything.”

He could manage that.

“I was wondering why you’d missed our lunch date. Very pleased to find you didn’t simply opt not to come without telling me, although I find the alternative to be distressing.”  He stopped talking for a moment then. “Apologies for breaking into your room. Again.”

While Garak simply sat and occasionally spoke Julian was dimly aware of the fact that he could feel his edges hardening again. The shards were being pulled back together.

He also noticed now that he was freezing. It usually happened like that, having sat sedentary for however long or coming down from some emotional extreme. He shivered.

“This station is cold,” said Garak.“The temperature, the lights, the people… all too cold.”

Julian managed a smile and it was like his mouth was freed from a curse. “It is, isn’t it.”

“Not to mention loud,” Garak added.

“All that machinery,” Julian nodded and spoke slowly. His mouth still needed to unstick. “Every time an alarm goes it’s like a sharp pain… I used to be… much better at this.”

“What do you mean?”

“I used to… I used to get these all the time as a child. Meltdowns, shutdowns, I think. But then my parents told me later that it was a side-effect of the augmentations and I tried to… to will myself to stop them, to bypass my natural instincts in order to not be found out and it worked, in a way, or at least nobody found out. I familiarised myself with and categorised any sights, sounds, smells, feelings I came across on earth during my Starfleet training and ordered them into lists and sublists: What I could handle mostly, what I could handle sometimes, what I needed to avoid at all costs. I managed to… to pretend. And then I came to Deep Space Nine and for awhile it was all too much again, I had to make new lists, but I managed, I really… I really did, I really did, I really-” he was talking himself into hyperventilating again, he knew this, but he couldn’t stop now, “- and then I got captured and it was like everything just stopped. I barely- I don’t even remember most of it, but when I got back it was so much worse -”

“Julian,” said Garak and the sound of his first name coming from Garak’s mouth surprised him back to the now. “Julian,” said Garak again. “You’re here. With me. On a floor that is quite cold, I might add.”

Julian breathed out and mumbled under the exhale. “One. Two. Three. Four. Five. Six. Seven. Eight. Nine. Ten.”

“What is that,” asked Garak.

“Counting my fingers. It… helps.”

“Noted,” and the easy way in which Garak seemed to have just accepted that he would be helping Julian again in future was another shock to his system, but then why wouldn’t he? Even if they hadn’t met up as often as they used to. Even if he was untrustworthy at heart and Julian could never figure out why Garak wanted his company at all. He found he missed Garak’s simple and complicated nature. It grounded him, somehow.

He got up off the floor, reaching out for Garak when he stumbled. He held him just tight enough to make sure that he wouldn’t fall. Not overcrowding – Julian suddenly remembered that Garak was claustrophobic. He must know how easily sensory inputs could become too much.

At Garak’s questioningly soft hold on his arm, Julian nodded and he helped him to the sofa. “Would you like some water?”

Julian nodded. As Garak went to fetch it, he began to talk again. Somehow… he just needed to get it out now, like an excision. “After the truth came out my mother told me that they’d been lying. I mean, they’ve been lying about so much, but specifically about this. I’ve always been like this. Or. Some of it. The meltdowns. I thought… those memories weren’t real. But now they are? Some of them. I’m having trouble sorting them.”

Garak handed him the water.

“I developed a theory,” said Julian, forgetting to sip.

“Tell me your theory doctor,” said Garak, his tone of voice tender as he sat down beside him, again, close enough if he needed him, but not too close.

“I was wondering why a heightened inability to process inputs was a side-effect of the vast majority of augments, when I had this inability before my augmentation. I started to suspect that it was less to do with the augmentations and was simply… who we were. The augmentations gone wrong could throw that into extremes, but that may have more to do with medical trauma responses than… anyway, I can’t confirm until I have more data. I did research into my own developmental delays, the medical history – it’s fascinating how we repeat cycles actually, first it was considered a form of possession or changelings, then it began to be classed under a broad form of what would be known as schizophrenia, then divided into narrow and still somewhat inaccurate categories of autism, aspergers, adhd, add, high and low functioning etcera, and then was gradually broadened again under general brain-differences known as neuroatypicals or neurodiverse,” he took a breath and continued: “- I’m not too interested in 21st century history honestly, but I know the government upheavals affected medical classifications and concepts of what was known broadly as “disabilities” at the time, and that it fundamentally shifted again once we formed the federation. But then -” and here he started gesticulating widely in excitement or outrage - “it all becomes the same just repackaged, doesn’t? Stigma against augments who are overwhelmingly people like me is stigma against neurodiversity is stigma against the “possessed,” it’s…” he trailed off. “It’s all the same,” he finished lamely.

He’d become very aware suddenly that he’d done that thing that annoyed most of the people he ever conversed with, running his mouth while forgetting the other person. But Garak didn’t seem annoyed. He was listening intently, in fact. At the pause he even nodded and offered: “The history of such matters is different on Cardassia. Or rather, mental and developmental differences don’t get acknowledged on Cardassia.”

“Eugenics?” said Julian with a frown.

“Not as such. We don’t mind in theory, as long as everyone can perform the tasks they’re assigned to. It’s a… class thing. If you belong to a powerful family and are expected to do great things in the army or politics or the sciences, being unable to do so for any reason is usually – what is the term humans use? - “Swept under the rug.” But then someone like you, dear doctor, if you had been Cardassian it might surprisingly have been easier for you.”

Julian shook his head. “My abilities are due to my augmentations. I’d have been… I don’t know. Not me,” he said softly.

At that, Garak gave him a look that he couldn’t pin down. Something… surprised for a moment, almost? Then smoothed out into an enigmatic smile. “Perhaps. From what you tell me you’ve always processed like you do, you’ve just been given better tools to translate and more…” he searched for the word for a second, before landing on: “space.”

At that Julian burst out into an unexpected laugh. “I certainly have enough space out here. More than enough, I’d say.”

Garak’s smile deepened. “But it doesn’t matter. Either you were always going to be able to pursue medicine and the stigmas of your parents and surrounding society were preventing you from discovering that on your own, or your augmentations made you unlock new abilities. But on Cardassia someone with the kind of passion you possess would have done well, with or without them.”

“If I were born into the right class. And if I didn’t get arrested for being fundamentally against the militaristic state.”

“Naturally,” acceded Garak. “And I must say I’m quite relieved to find the incorruptible, perfect federation comes with its own flaws. One wouldn’t have expected it with the way humans constantly go on about it.”

“Oh, we go on about the federation? According to you Cardassia is superior in culture -”

“- oh, definitely -”

“- politics -”

“- without a doubt, my dear -”

“- criminal justice system?”

“- well, we’ve never brought a wrong case before the court-”

“- I know you’re just saying that to rile me up-”

“- my dear doctor, when have I ever been anything but sincere?”

“- when have you ever said anything you meant?”

“- I am offended, truly-” said Garak with a big grin on his face.

Julian found it the easiest thing in the galaxy to return.

“Remember to drink your water,” he was reminded, gently, before they continued their lunch discussion. It was a moment in which they both forgot that they had ever begun to drift apart in the first place.

—— The End ——-

[thekeeperodm]

Am I human, or am I cripple?

My first void post will be about a feeling that I’ve had for a long time.

In my life, I’ve been very fortunate to have made some very close friendships. Most of these have come in the past four years when I was in college. Before that, I had friends that I enjoyed being around, but I never really talked to them very much about anything serious. Great friends, but I never had that experience of really deep connection. That fact probably propagated the feelings I had of isolation, as I’m someone who comes from a strange, neurodiverse family that often isn’t like most others.

This all changed when I left my hometown, and went away to college. I was fortunate enough to make some fantastic friends very quickly, largely due to the fact that 1) they’re great people, and 2) I lived in constant proximity to them, and could talk to them practically any time of day or night. This was a big contrast to my K-12 schooling, where despite being in marching band after school, I rarely, if ever, truly connected with my peers. This changed with my new college friendships, and with these new connections, I began to feel things that I never had before. I previously had friends that I liked very much, but these college friends were the first ones that I can say that I truly loved as total human beings.

I know how corny that sounds, but it’s absolutely true. I loved them, and still love them so so much. I understand that it’s completely normal to love your friends. However, what if you love them too much? That probably sounds pretty arrogant or self-righteous, but I don’t mean it that way at all. Sometimes, I literally can’t stop thinking about how much I love them, occasionally to the point where it can be a hindrance to social interactions with the person, and/or can be a distraction to my daily tasks and obligations. Just to clarify, I’m talking about platonic love only towards friends. This feeling can really be deleterious to my friendships that I really care about. How am I supposed to have any sort of normal conversation with a friend if all I can think about is how much I love and care about them?

This problem actually doesn’t happen very often, but it’s so strong that it’s left enough of an impression on me to warrant a void post. The next question that naturally arises for me from this feeling is “why am I feeling like this? Is this normal?”. My gut feeling is that my uniquely-wired brain is contributing to whatever’s going on. When I was a toddler, I was diagnosed with ASD, but just barely, maybe only as much as Seinfeld has. Autism’s pretty common in my family, so it’s no surprise that I got a speck of it. I’ve noticed that the main thing it gave me was incredible focus, which is both an advantage and disadvantage depending on the situation. I think that my brain has really honed on this feeling of platonic love, and amplified it beyond what it is for “normal” people, assuming anyone’s really the mythical normal. This probably isn’t the whole story, but it’s the best guess I’ve got as of now.

The final question I asked myself after I thought about “Why?” was “What do I do about it?”. I’ve come up with two different, but compatible schools of though to deal with this. The first is the recognition that I’m stuck in my own head a lot, and need to improve on getting grounded back in reality when I get too off track. The second is the acknowledgment that love is powerful, and is necessary to be a full human being with a complete range of emotion. Loving someone else and being loved are some of the most important things a person can feel. Surrendering to those feelings, whether they be platonic or romantic, is a part of the human experience, and probably one of the most “normal” things a person can do. I think that both schools of though I have on this will help me on the journey of the strange life I’ve been given.

And with that, this post may now enter the deep, dark void. May it be spaghettified into nothingness.

[ixvyupdates]

Even as a Disability Advocate I Still Did Everything Wrong When My Daughter Was Diagnosed With Autism

November 6, 2018, is the day my daughter was officially diagnosed with autism. That’s the day my world collapsed.

For the first hour of her three-hour IEP meeting, I was doing OK.

We were reviewing her old goals and some of the new testing that the school had been doing with her. Then the moment came when we had to start new IEP goals.

One of the million (maybe it was 10 but it felt like a million people) school people in the room said, “We are officially changing her diagnosis on her IEP to autism,” and that was my last clear memory. I just had an out-of-body experience and the whole thing felt surreal. I lost it and cried.

I would go easier on myself if I were an ordinary parent who had no prior understanding about children with disabilities. But the thing is, I had already been working hard as a disability advocate! I specialize in educating communities about young Black children with disabilities and de-stigmatizing disabilities with communities and families.

I had already had my breakdown. Seriously, my daughter had been receiving early intervention services since she was 2 years old! I had already been through the struggle to get her the early interventions and services she needed in school and at home. I had even completed a year-long intensive policy training to educate parents about federal and state legal protections for children with disabilities, and how to advocate for disability services, not just for their own children, but for all children with disabilities. I am now creating an organization specifically to help Black families advocate for their children with disabilities.

All that work represents almost four years of me researching, participating, fighting, learning and advocating for the rights of Black disabled children to full inclusion and to be treated as whole people.

I thought all that work meant that I was “better” now. I was supposed to be “over it.” I was supposed to be ready to accept my child with disabilities for exactly who she is. And, still, on that November day last fall, while sitting in the room with all the different educators, doctors and specialists, when I was faced with the words, “high-functioning autism and Aspergers,” I lost it.

My husband had to take over the talking. The room was spinning and I couldn’t focus on anything but the word “autism.” So, after the second hour, I asked to reschedule.

I definitely felt like I had failed as a parent and was a fraud as a disability advocate. I was supposed to be thinking about my daughter’s strengths and realizing autism is just one part of who she is. I definitely was not supposed to be sobbing and completely disassociating in a meeting.

The one thing I did right, was realize I was not emotionally or mentally in a place to have any real conversation about my daughter’s needs. So I asked for another meeting.

Then I went home and continued to handle things the wrong way.

I am most ashamed that I knew in my mind “the best way to handle a child’s autism diagnosis” and, with my own daughter, I still did everything “wrong.” Here’s what I did:

I cried with anger.

I got scared that her life was ruined. I feared she would never have real friendships or be able to have a real job or a real family.

I labeled her and referred to her as “my autistic daughter” instead of using her name.

I told her her brain was different from the rest of her family and friends! Then, I begin to ask her questions about “her different brain” with no context or developmentally appropriate guidelines. (As a side note, let me mention that there is an appalling shortage of books about autism for Black parents and children.)

I treated her like she was broken and needed me to “fix” her.

I made it about me instead of her.

It Took Time for Me To Realize How Unprepared I Felt About Autism

After three months of time to reflect, I realized my inappropriate responses were coming from shock and feeling very unprepared. Learning about the differences between how “neurotypical” and “neurodiverse” people perceive the world and interact with it reminded me of the challenges of getting to know people cross-culturally. To me it feels like I did a transracial adoption and I know nothing about the child’s culture. It was like I thought I was adopting a Black child and got a Russian or Korean child instead!

I was overwhelmed by how much I needed to learn about autism, in order to make sure my daughter knows, loves and is proud of who she is, even though she is different from her parents and sister. Like transracial adoptions, I wanted my daughter to be proud of who she is and I had no idea how to do that! I had so much to learn and I didn’t want her to suffer because of our lack of knowledge.

I know, I know, giving your child love is important. We give her lots of love. But, like parents who adopt transracially, giving our kids love isn’t enough. I have to make sure she knows and is proud of who she is and that I know and surround her with all the support she needs. Which means being around people who aren’t me. And, I realized I didn’t know any of my daughter’s people. I didn’t know any people with autism.

A few months into this journey, I would say I am better but still have a long way to go. I still am unable to talk to the school or our private doctor about her diagnosis. I have yet to enroll her in the supplemental therapies that she needs through our private insurance like occupational therapy, therapist, and speech therapy. I literally have not been able to return phone calls or send information needed to get my daughter services! And worse, I know better! Remember, I wrote a piece advising people on what to do in my situation!

But I know I continue to struggle with deep sadness for my daughter, too.

There Is No Therapy To Outgrow Autism

I also had to acknowledge some mistaken beliefs I held. I believed that our experiences with early intervention had prepared me for whatever “special needs” my daughter would have. I also thought “special needs” and “early intervention” were the same for me emotionally as words like “disabled” and “autism.”

They weren’t.

I only recently even realized that in my heart I drew a distinction between terms like “special needs” and “early interventions” versus “disabled.” Having a child with “special needs” didn’t have the same emotional impact on me as having a child who is “autistic” or “disabled.”

Learning that my 2-year-old daughter had a speech delay and sensory processing disorder did not seem as serious or as permanent as having a daughter with a disability like autism. Speech delay and sensory processing disorder was something she could, and would, outgrow. Thanks to speech therapy, my daughter’s speech has improved, but there isn’t a therapy for her to outgrow autism.

I have been so emotionally overwhelmed that I have been paralyzed about getting my daughter the services she needs. Luckily, my husband and I put in a lot of work in the first four years of her life to get her services she needed, so my paralysis in moving forward isn’t damaging her. She is still receiving a lot of the necessary supports that we fought so hard to get her at school.

The hard part isn’t with my daughter; it is with me. I am trying to be kind to myself about my terrible reaction to her diagnosis. And, ironically, I think it makes me an even stronger advocate and support for Black parents and children with disabilities, because I am not perfect. Not even close! I’ve made mistakes and probably will continue to make mistakes.

And I am committed to giving my child the best life possible, so I know I need to move past this, or learn to work in spite of my emotional feelings about her diagnosis, and work with my husband and providers, to be the best advocate my daughter needs. Now it is 2019 and it is time for me to move forward past my own sad feelings, and instead focus on healthy ways that I can help provide my daughter the best possible life.

Photo by Eric J. Ford, Twenty20-licensed.

Even as a Disability Advocate I Still Did Everything Wrong When My Daughter Was Diagnosed With Autism syndicated from https://sapsnkraguide.wordpress.com

[selfdiscoverymedia]

(via MH24-16. Dr. Sean Botha “The Listen Program”)

My PhD research into sound and “silence” meant analyzing music using deep listening practices and in the process, I created a new analysis model for musicians. Whilst doing this I created “The Listen Program” because I noticed how in-depth my own listening process became. Without realizing I was creating deep focus for my own neurodiverse brain.

[ixvyupdates]

Even as a Disability Advocate I Still Did Everything Wrong When My Daughter Was Diagnosed With Autism

November 6, 2018, is the day my daughter was officially diagnosed with autism. That’s the day my world collapsed.

For the first hour of her three-hour IEP meeting, I was doing OK.

We were reviewing her old goals and some of the new testing that the school had been doing with her. Then the moment came when we had to start new IEP goals.

One of the million (maybe it was 10 but it felt like a million people) school people in the room said, “We are officially changing her diagnosis on her IEP to autism,” and that was my last clear memory. I just had an out-of-body experience and the whole thing felt surreal. I lost it and cried.

I would go easier on myself if I were an ordinary parent who had no prior understanding about children with disabilities. But the thing is, I had already been working hard as a disability advocate! I specialize in educating communities about young Black children with disabilities and de-stigmatizing disabilities with communities and families.

I had already had my breakdown. Seriously, my daughter had been receiving early intervention services since she was 2 years old! I had already been through the struggle to get her the early interventions and services she needed in school and at home. I had even completed a year-long intensive policy training to educate parents about federal and state legal protections for children with disabilities, and how to advocate for disability services, not just for their own children, but for all children with disabilities. I am now creating an organization specifically to help Black families advocate for their children with disabilities.

All that work represents almost four years of me researching, participating, fighting, learning and advocating for the rights of Black disabled children to full inclusion and to be treated as whole people.

I thought all that work meant that I was “better” now. I was supposed to be “over it.” I was supposed to be ready to accept my child with disabilities for exactly who she is. And, still, on that November day last fall, while sitting in the room with all the different educators, doctors and specialists, when I was faced with the words, “high-functioning autism and Aspergers,” I lost it.

My husband had to take over the talking. The room was spinning and I couldn’t focus on anything but the word “autism.” So, after the second hour, I asked to reschedule.

I definitely felt like I had failed as a parent and was a fraud as a disability advocate. I was supposed to be thinking about my daughter’s strengths and realizing autism is just one part of who she is. I definitely was not supposed to be sobbing and completely disassociating in a meeting.

The one thing I did right, was realize I was not emotionally or mentally in a place to have any real conversation about my daughter’s needs. So I asked for another meeting.

Then I went home and continued to handle things the wrong way.

I am most ashamed that I knew in my mind “the best way to handle a child’s autism diagnosis” and, with my own daughter, I still did everything “wrong.” Here’s what I did:

I cried with anger.

I got scared that her life was ruined. I feared she would never have real friendships or be able to have a real job or a real family.

I labeled her and referred to her as “my autistic daughter” instead of using her name.

I told her her brain was different from the rest of her family and friends! Then, I begin to ask her questions about “her different brain” with no context or developmentally appropriate guidelines. (As a side note, let me mention that there is an appalling shortage of books about autism for Black parents and children.)

I treated her like she was broken and needed me to “fix” her.

I made it about me instead of her.

It Took Time for Me To Realize How Unprepared I Felt About Autism

After three months of time to reflect, I realized my inappropriate responses were coming from shock and feeling very unprepared. Learning about the differences between how “neurotypical” and “neurodiverse” people perceive the world and interact with it reminded me of the challenges of getting to know people cross-culturally. To me it feels like I did a transracial adoption and I know nothing about the child’s culture. It was like I thought I was adopting a Black child and got a Russian or Korean child instead!

I was overwhelmed by how much I needed to learn about autism, in order to make sure my daughter knows, loves and is proud of who she is, even though she is different from her parents and sister. Like transracial adoptions, I wanted my daughter to be proud of who she is and I had no idea how to do that! I had so much to learn and I didn’t want her to suffer because of our lack of knowledge.

I know, I know, giving your child love is important. We give her lots of love. But, like parents who adopt transracially, giving our kids love isn’t enough. I have to make sure she knows and is proud of who she is and that I know and surround her with all the support she needs. Which means being around people who aren’t me. And, I realized I didn’t know any of my daughter’s people. I didn’t know any people with autism.

A few months into this journey, I would say I am better but still have a long way to go. I still am unable to talk to the school or our private doctor about her diagnosis. I have yet to enroll her in the supplemental therapies that she needs through our private insurance like occupational therapy, therapist, and speech therapy. I literally have not been able to return phone calls or send information needed to get my daughter services! And worse, I know better! Remember, I wrote a piece advising people on what to do in my situation!

But I know I continue to struggle with deep sadness for my daughter, too.

There Is No Therapy To Outgrow Autism

I also had to acknowledge some mistaken beliefs I held. I believed that our experiences with early intervention had prepared me for whatever “special needs” my daughter would have. I also thought “special needs” and “early intervention” were the same for me emotionally as words like “disabled” and “autism.”

They weren’t.

I only recently even realized that in my heart I drew a distinction between terms like “special needs” and “early interventions” versus “disabled.” Having a child with “special needs” didn’t have the same emotional impact on me as having a child who is “autistic” or “disabled.”

Learning that my 2-year-old daughter had a speech delay and sensory processing disorder did not seem as serious or as permanent as having a daughter with a disability like autism. Speech delay and sensory processing disorder was something she could, and would, outgrow. Thanks to speech therapy, my daughter’s speech has improved, but there isn’t a therapy for her to outgrow autism.

I have been so emotionally overwhelmed that I have been paralyzed about getting my daughter the services she needs. Luckily, my husband and I put in a lot of work in the first four years of her life to get her services she needed, so my paralysis in moving forward isn’t damaging her. She is still receiving a lot of the necessary supports that we fought so hard to get her at school.

The hard part isn’t with my daughter; it is with me. I am trying to be kind to myself about my terrible reaction to her diagnosis. And, ironically, I think it makes me an even stronger advocate and support for Black parents and children with disabilities, because I am not perfect. Not even close! I’ve made mistakes and probably will continue to make mistakes.

And I am committed to giving my child the best life possible, so I know I need to move past this, or learn to work in spite of my emotional feelings about her diagnosis, and work with my husband and providers, to be the best advocate my daughter needs. Now it is 2019 and it is time for me to move forward past my own sad feelings, and instead focus on healthy ways that I can help provide my daughter the best possible life.

Photo by Eric J. Ford, Twenty20-licensed.

Even as a Disability Advocate I Still Did Everything Wrong When My Daughter Was Diagnosed With Autism syndicated from https://sapsnkraguide.wordpress.com

[ixvyupdates]

Even as a Disability Advocate I Still Did Everything Wrong When My Daughter Was Diagnosed With Autism

November 6, 2018, is the day my daughter was officially diagnosed with autism. That’s the day my world collapsed.

For the first hour of her three-hour IEP meeting, I was doing OK.

We were reviewing her old goals and some of the new testing that the school had been doing with her. Then the moment came when we had to start new IEP goals.

One of the million (maybe it was 10 but it felt like a million people) school people in the room said, “We are officially changing her diagnosis on her IEP to autism,” and that was my last clear memory. I just had an out-of-body experience and the whole thing felt surreal. I lost it and cried.

I would go easier on myself if I were an ordinary parent who had no prior understanding about children with disabilities. But the thing is, I had already been working hard as a disability advocate! I specialize in educating communities about young Black children with disabilities and de-stigmatizing disabilities with communities and families.

I had already had my breakdown. Seriously, my daughter had been receiving early intervention services since she was 2 years old! I had already been through the struggle to get her the early interventions and services she needed in school and at home. I had even completed a year-long intensive policy training to educate parents about federal and state legal protections for children with disabilities, and how to advocate for disability services, not just for their own children, but for all children with disabilities. I am now creating an organization specifically to help Black families advocate for their children with disabilities.

All that work represents almost four years of me researching, participating, fighting, learning and advocating for the rights of Black disabled children to full inclusion and to be treated as whole people.

I thought all that work meant that I was “better” now. I was supposed to be “over it.” I was supposed to be ready to accept my child with disabilities for exactly who she is. And, still, on that November day last fall, while sitting in the room with all the different educators, doctors and specialists, when I was faced with the words, “high-functioning autism and Aspergers,” I lost it.

My husband had to take over the talking. The room was spinning and I couldn’t focus on anything but the word “autism.” So, after the second hour, I asked to reschedule.

I definitely felt like I had failed as a parent and was a fraud as a disability advocate. I was supposed to be thinking about my daughter’s strengths and realizing autism is just one part of who she is. I definitely was not supposed to be sobbing and completely disassociating in a meeting.

The one thing I did right, was realize I was not emotionally or mentally in a place to have any real conversation about my daughter’s needs. So I asked for another meeting.

Then I went home and continued to handle things the wrong way.

I am most ashamed that I knew in my mind “the best way to handle a child’s autism diagnosis” and, with my own daughter, I still did everything “wrong.” Here’s what I did:

I cried with anger.

I got scared that her life was ruined. I feared she would never have real friendships or be able to have a real job or a real family.

I labeled her and referred to her as “my autistic daughter” instead of using her name.

I told her her brain was different from the rest of her family and friends! Then, I begin to ask her questions about “her different brain” with no context or developmentally appropriate guidelines. (As a side note, let me mention that there is an appalling shortage of books about autism for Black parents and children.)

I treated her like she was broken and needed me to “fix” her.

I made it about me instead of her.

It Took Time for Me To Realize How Unprepared I Felt About Autism

After three months of time to reflect, I realized my inappropriate responses were coming from shock and feeling very unprepared. Learning about the differences between how “neurotypical” and “neurodiverse” people perceive the world and interact with it reminded me of the challenges of getting to know people cross-culturally. To me it feels like I did a transracial adoption and I know nothing about the child’s culture. It was like I thought I was adopting a Black child and got a Russian or Korean child instead!

I was overwhelmed by how much I needed to learn about autism, in order to make sure my daughter knows, loves and is proud of who she is, even though she is different from her parents and sister. Like transracial adoptions, I wanted my daughter to be proud of who she is and I had no idea how to do that! I had so much to learn and I didn’t want her to suffer because of our lack of knowledge.

I know, I know, giving your child love is important. We give her lots of love. But, like parents who adopt transracially, giving our kids love isn’t enough. I have to make sure she knows and is proud of who she is and that I know and surround her with all the support she needs. Which means being around people who aren’t me. And, I realized I didn’t know any of my daughter’s people. I didn’t know any people with autism.

A few months into this journey, I would say I am better but still have a long way to go. I still am unable to talk to the school or our private doctor about her diagnosis. I have yet to enroll her in the supplemental therapies that she needs through our private insurance like occupational therapy, therapist, and speech therapy. I literally have not been able to return phone calls or send information needed to get my daughter services! And worse, I know better! Remember, I wrote a piece advising people on what to do in my situation!

But I know I continue to struggle with deep sadness for my daughter, too.

There Is No Therapy To Outgrow Autism

I also had to acknowledge some mistaken beliefs I held. I believed that our experiences with early intervention had prepared me for whatever “special needs” my daughter would have. I also thought “special needs” and “early intervention” were the same for me emotionally as words like “disabled” and “autism.”

They weren’t.

I only recently even realized that in my heart I drew a distinction between terms like “special needs” and “early interventions” versus “disabled.” Having a child with “special needs” didn’t have the same emotional impact on me as having a child who is “autistic” or “disabled.”

Learning that my 2-year-old daughter had a speech delay and sensory processing disorder did not seem as serious or as permanent as having a daughter with a disability like autism. Speech delay and sensory processing disorder was something she could, and would, outgrow. Thanks to speech therapy, my daughter’s speech has improved, but there isn’t a therapy for her to outgrow autism.

I have been so emotionally overwhelmed that I have been paralyzed about getting my daughter the services she needs. Luckily, my husband and I put in a lot of work in the first four years of her life to get her services she needed, so my paralysis in moving forward isn’t damaging her. She is still receiving a lot of the necessary supports that we fought so hard to get her at school.

The hard part isn’t with my daughter; it is with me. I am trying to be kind to myself about my terrible reaction to her diagnosis. And, ironically, I think it makes me an even stronger advocate and support for Black parents and children with disabilities, because I am not perfect. Not even close! I’ve made mistakes and probably will continue to make mistakes.

And I am committed to giving my child the best life possible, so I know I need to move past this, or learn to work in spite of my emotional feelings about her diagnosis, and work with my husband and providers, to be the best advocate my daughter needs. Now it is 2019 and it is time for me to move forward past my own sad feelings, and instead focus on healthy ways that I can help provide my daughter the best possible life.

Photo by Eric J. Ford, Twenty20-licensed.

Even as a Disability Advocate I Still Did Everything Wrong When My Daughter Was Diagnosed With Autism syndicated from https://sapsnkraguide.wordpress.com

[ixvyupdates]

Even as a Disability Advocate I Still Did Everything Wrong When My Daughter Was Diagnosed With Autism

November 6, 2018, is the day my daughter was officially diagnosed with autism. That’s the day my world collapsed.

For the first hour of her three-hour IEP meeting, I was doing OK.

We were reviewing her old goals and some of the new testing that the school had been doing with her. Then the moment came when we had to start new IEP goals.

One of the million (maybe it was 10 but it felt like a million people) school people in the room said, “We are officially changing her diagnosis on her IEP to autism,” and that was my last clear memory. I just had an out-of-body experience and the whole thing felt surreal. I lost it and cried.

I would go easier on myself if I were an ordinary parent who had no prior understanding about children with disabilities. But the thing is, I had already been working hard as a disability advocate! I specialize in educating communities about young Black children with disabilities and de-stigmatizing disabilities with communities and families.

I had already had my breakdown. Seriously, my daughter had been receiving early intervention services since she was 2 years old! I had already been through the struggle to get her the early interventions and services she needed in school and at home. I had even completed a year-long intensive policy training to educate parents about federal and state legal protections for children with disabilities, and how to advocate for disability services, not just for their own children, but for all children with disabilities. I am now creating an organization specifically to help Black families advocate for their children with disabilities.

All that work represents almost four years of me researching, participating, fighting, learning and advocating for the rights of Black disabled children to full inclusion and to be treated as whole people.

I thought all that work meant that I was “better” now. I was supposed to be “over it.” I was supposed to be ready to accept my child with disabilities for exactly who she is. And, still, on that November day last fall, while sitting in the room with all the different educators, doctors and specialists, when I was faced with the words, “high-functioning autism and Aspergers,” I lost it.

My husband had to take over the talking. The room was spinning and I couldn’t focus on anything but the word “autism.” So, after the second hour, I asked to reschedule.

I definitely felt like I had failed as a parent and was a fraud as a disability advocate. I was supposed to be thinking about my daughter’s strengths and realizing autism is just one part of who she is. I definitely was not supposed to be sobbing and completely disassociating in a meeting.

The one thing I did right, was realize I was not emotionally or mentally in a place to have any real conversation about my daughter’s needs. So I asked for another meeting.

Then I went home and continued to handle things the wrong way.

I am most ashamed that I knew in my mind “the best way to handle a child’s autism diagnosis” and, with my own daughter, I still did everything “wrong.” Here’s what I did:

I cried with anger.

I got scared that her life was ruined. I feared she would never have real friendships or be able to have a real job or a real family.

I labeled her and referred to her as “my autistic daughter” instead of using her name.

I told her her brain was different from the rest of her family and friends! Then, I begin to ask her questions about “her different brain” with no context or developmentally appropriate guidelines. (As a side note, let me mention that there is an appalling shortage of books about autism for Black parents and children.)

I treated her like she was broken and needed me to “fix” her.

I made it about me instead of her.

It Took Time for Me To Realize How Unprepared I Felt About Autism

After three months of time to reflect, I realized my inappropriate responses were coming from shock and feeling very unprepared. Learning about the differences between how “neurotypical” and “neurodiverse” people perceive the world and interact with it reminded me of the challenges of getting to know people cross-culturally. To me it feels like I did a transracial adoption and I know nothing about the child’s culture. It was like I thought I was adopting a Black child and got a Russian or Korean child instead!

I was overwhelmed by how much I needed to learn about autism, in order to make sure my daughter knows, loves and is proud of who she is, even though she is different from her parents and sister. Like transracial adoptions, I wanted my daughter to be proud of who she is and I had no idea how to do that! I had so much to learn and I didn’t want her to suffer because of our lack of knowledge.

I know, I know, giving your child love is important. We give her lots of love. But, like parents who adopt transracially, giving our kids love isn’t enough. I have to make sure she knows and is proud of who she is and that I know and surround her with all the support she needs. Which means being around people who aren’t me. And, I realized I didn’t know any of my daughter’s people. I didn’t know any people with autism.

A few months into this journey, I would say I am better but still have a long way to go. I still am unable to talk to the school or our private doctor about her diagnosis. I have yet to enroll her in the supplemental therapies that she needs through our private insurance like occupational therapy, therapist, and speech therapy. I literally have not been able to return phone calls or send information needed to get my daughter services! And worse, I know better! Remember, I wrote a piece advising people on what to do in my situation!

But I know I continue to struggle with deep sadness for my daughter, too.

There Is No Therapy To Outgrow Autism

I also had to acknowledge some mistaken beliefs I held. I believed that our experiences with early intervention had prepared me for whatever “special needs” my daughter would have. I also thought “special needs” and “early intervention” were the same for me emotionally as words like “disabled” and “autism.”

They weren’t.

I only recently even realized that in my heart I drew a distinction between terms like “special needs” and “early interventions” versus “disabled.” Having a child with “special needs” didn’t have the same emotional impact on me as having a child who is “autistic” or “disabled.”

Learning that my 2-year-old daughter had a speech delay and sensory processing disorder did not seem as serious or as permanent as having a daughter with a disability like autism. Speech delay and sensory processing disorder was something she could, and would, outgrow. Thanks to speech therapy, my daughter’s speech has improved, but there isn’t a therapy for her to outgrow autism.

I have been so emotionally overwhelmed that I have been paralyzed about getting my daughter the services she needs. Luckily, my husband and I put in a lot of work in the first four years of her life to get her services she needed, so my paralysis in moving forward isn’t damaging her. She is still receiving a lot of the necessary supports that we fought so hard to get her at school.

The hard part isn’t with my daughter; it is with me. I am trying to be kind to myself about my terrible reaction to her diagnosis. And, ironically, I think it makes me an even stronger advocate and support for Black parents and children with disabilities, because I am not perfect. Not even close! I’ve made mistakes and probably will continue to make mistakes.

And I am committed to giving my child the best life possible, so I know I need to move past this, or learn to work in spite of my emotional feelings about her diagnosis, and work with my husband and providers, to be the best advocate my daughter needs. Now it is 2019 and it is time for me to move forward past my own sad feelings, and instead focus on healthy ways that I can help provide my daughter the best possible life.

Photo by Eric J. Ford, Twenty20-licensed.

Even as a Disability Advocate I Still Did Everything Wrong When My Daughter Was Diagnosed With Autism syndicated from https://sapsnkraguide.wordpress.com