#new aac user

[systems-overloaded]

why is the cboard aac app now having a pop up that says my free trial ended and i need to subscribe and pay to use features?

i read that they said they're totally free because ppl shouldnt have to pay to communicate? and there was nothing about trial periods before

im so confused

[pixierainbows]

Pixie have good bad day, both.

went to plant store today with guardian Librarian ! Pixie really happy get time with guardian Librarian ! and ! also really like go to plant store

Pixie get pretty pretty flower plants !!! and a very happy tomato plant !!!

and ! Pixie look very carefully for to get good plants for guardian Wizard too , who could not go plant store because guardian Wizard have work hard

too late for pictures today but will get pictures later

but also . stranger person just walk right up to Sunshine and petted Sunshine and make Pixie sick …

but is good example of Pixies disabled brain , how Pixie brain move much much too slow to stop people and not can just TELL people afterwards either , Pixie nonverbal, not can speak at all .

guardian Librarian stop other stranger person from doing same .

Pixie very grateful when guardians protect Pixie and Sunshine

and but ... happy new baby plants for play with !!!

[vixyz-aac-hoard]

Animal Crossing Fruits

[red--stims]

pinned about me post ! 🌈

•name: Red or Roo (nickname) or Star (middle name). like being called all those.

•pronouns: he/they

•25 years old

•trans masculine non binary person

•have autism

•have cerebral palsy

•have learning disability (uk definition, called intellectual disability elsewhere)

•MSN-HSN

•non verbal full time AAC user. use AAC to make posts. also post about AAC lots. enjoy customing and seeing different set ups

•mobility aid user. use walking stick shorter distances and power chair longer distances. also wear AFO walking aid

•mum is legal carer

•me attend day centre for adults with disabilities when mum at work. it becoming safe place for me. love my care staff

•me happy be here and make friends!! :>

still figure out how tumblr work but enjoy already

have good day everyone 🤍☀️

[beatingtheouijaboardallegations]

wish there are less people invested in one single narrative of nonspeaking / nonverbal identity.

feels like there many different “traditions” or something of nonverbal nonspeaking activists and each small community all says same thing, same origin story same definitions same words same talk points. and I understand this because we are all autistic! we are all echolalic we all echo language and ideas from the community we surround selves with. but find it really hard when echo words becomes ddogma becomes thing you can’t say differently and just assume everyone thinks same thing or else not really in group.

(going to try to use “nonspeaking” for first community and “nonverbal” for second community because that’s what each one of these communities usually prefer. language hard so sorry if don’t do this consistent.)

like if I go to one of I-ASC (international association on spell to communicate) conference or one of their neuro lyrical events online. as a nonspeaker since birth who does have experience of “learned language without having speech”, of people assume don’t understand anything until finally found way to express self that world understands, and people still doubt am really the one saying this. in some ways relate to these people much much more than people on here who mostly became nonspeaking later in life and have very different upbringing not raised as a person with a DD not grow up without speech. places like the I-ASC and the Spellers community and impAACt and local meet up group for nonspeakers feel like family to me, feel like my people who move and talk and live like me.

but. there things in these community that are very black and white. that just can’t relate to. don’t relate to mantra of “speech is motor, language cognitive” for example. or “it’s not about don’t understand or about I don’t want to, it’s about can’t make body do it.”. because my motor issues interact with language processing interact with cognitive stuff not able to neat separate. yes AAC is freedom but I still have to make a lot of compromises to express self with words. have to leave out a lot or (more often) add a lot unnecessary stuff because there things that brain stuck that just can’t say in a way people will understand.

think this is true for lots more nonspeaking people than organizations like these (which were started + run by speaking people and communication & regulation partners and SLPs) say is true. a lot of nonspeaking people in these communities encouraged by speaking people in movement to focus emphasize on “we don’t have intellectual disability we can communicate with words just as good as you can, the motor problems is all that there we don’t have any language problems .” because this is what parents and speaking autistics and well meaning allies/communication partners think is important. they think the way to value us and to say we feel and think and know and should have rights (which we should!) is to distance distance distance far far away from any associate with intellectual disabilities with language disabilities with cognitive disabilities with process differently.

so as long as can be acceptable enough nonspeaker to them they support. which does not feel like support. nonspeaking doesn’t mean non thinking but intellectual disability and language deficit and cognitive disability doesn’t mean non thinking too. and a lot of people in these communities do have more complicated relationships with language but are told by speaking people in these communities to not talk about that only talk about motor stuff or connect everything back to motor stuff. which doesn’t feel like support. feels like flatten make easier make more convenient.

and then when I go on tumblr and see the nonverbal people speaking out here. i started out not on social media mostly in offline AAC and speller advocacy and someone told me there was good community of autistics with good range of support needs on tumblr so I joined. and do find bigger range of autistic and nonverbal nonspeaking experiences able to talk about here. able to talk about mental illness & psychosis & dissociation (which even nonspeaking advocacy communities assume nonspeaking people don’t have these problems or not capable). able to talk about “challenging” behaviors that so so stigmatized. able to talk about language and cognitive stuff. able to talk about gender and queerness without be policed (a lot of professionals and communication support people in nonspeaking advocacy are weird conservative and don’t think can know our genders / sexualities even though always talk about presume competence. it weird.) just saw beautiful post about nonverbal trans experience with gender that I loved. really like that people with intellectual disability getting heard, that we challenge expectation to have “proper” writen language. speech therapy and even learning how to use AAC, learning how to use letterboard etc was always about correct every mistake, about fade prompting, about use grammar properly so other people think competent. and have been able to let go of that on here because the language norms are so so different.

but at the same time I feel like there lot more stuff that not useful. lot of focus on right words to say, a lot of calling out other blogs, a lot of trolls, lot of drama that really doesn’t exist in real life nonspeaking community. like frustrated when go in nonverbal or nonspeaking tag and most posts not about nonverbal people human rights or experience, but about words. specific about people saying go nonverbal, someone trying to say it’s good or someone trying to say it’s bad. every other post about someone ask for right word to say instead of “go nonverbal”, or list of other words to say. or people asking whether or not they’re nonverbal or semiverbal or lose speech. and even within nonverbal community on here lot more talk about words than about justice. or even about lived experience of be nonverbal. people forget that real world outside tumblr tags exist sometimes. that there people living without communication, people being deny communication, people in institutions, people without resources. and that there are ways to change that and to self advocate besides changing what word you call yourself.

not saying words not important. yes it is annoying and bad when people talk abouit going nonverbal and forget that we exist. yes am grateful to people who decide to change what word they call themself to not erase us. but frustrated with how there not really conversation, one opinion just take as The Nonverbal Opinion, just like how it is in offline nonspeaking / speller community.

not seem like these communities are interacting, are compare notes on experience are combine to synthesize into something better. into what community could be. community that leaves no one behind. community that doesn’t claim to speak for everyone, doesn’t claim account for all experiences but still says all nonspeakers exist and all deserve rights. doesn’t tell anyone “don’t talk about your experience with X because it doesn’t fit what we want to tell the world that nonspeaking people are like.” where everything able to be talked about without it ever make less true that all of us need respect and rights more than any one word / idea.

curious if anyone have ideas for how to make this community.

[melmeldotpng]

actual intro post thingy... idk i see other people do it

hello!! im melody or mel

my main is @cleanestkitty so if u see them follow you its me :3 (be very honoured /silly)

im an autistic aac user, i use a wheelchair and cane and im 17!

i make emojis and userboxes, for emojis i mainly want to draw promts that i dont see very often rather than common ones, unless someone wants me to of course !

for requests ill do anything i think im capable of drawing

e.g. i probably cant draw complex poses, fursonas/anthro, niche animals(?), complex robots

feel free to request any fandom as long as it isnt

very problematic (alfreds playhouse, coffin of andy&leyley, etc)

transformers (i cant draw em..,,,)

tmnt (^ 🥲)

genshin (unless friends)

thats probably it? sorry if i missed anythin

i wont do nsfw, maybe when im older? doubt it though since im ace-spec and sucky at anatomy lol

[nebby-aac-blog]

got new cosplay things today ! for Furina and Childe . want cosplay Furina this summer so very excited start working on her .

[zebulontheplanet]

I haven’t been using my AAC lately cause really bad anxiety. There’s someone staying in my house that I don’t really know so it’s causing me so much anxiety. Anxiety = avoidance to me.

Need to learn to just push through and use it cause having meltdowns almost every night isn’t fun. Crying because overwhelmed because I used or didn’t use speech is hard. Can’t communicate efficiently so I get frustrated. Communicate and use my words to much and force myself and get frustrated. I need to find a middle ground but that middle ground is AAC. AAC hard to use around strangers because im afraid of rejection.

Although I don’t like this person, im afraid that he’ll point, or laugh, or something like that.

Overall, finding middle ground as a new AAC user is hard.

[sarahjaneshearer-blog]

10 comparisons between my electric new chair than my electric old chair

Hey how are you???

This week I got my new chair and I am going to tell you 10 comparisons with my electric old chair and my electric new chair.

My new chair is more comfortable than my old chair!!!

My new ew chair is faster than my old chair!!!

My control panel on my new chair can move around in wards and out wards where my old control panel only moved out words!!!

My new chair is smaller than my old chair so it is easier to go into places.

My new chair has six wheels and then my old chair had four wheels. Having six wheels makes it more stable.

My new chair is easy to move than my old chair.

My new chair is quieter than my old chair.

I can go into my room in my chair.

My aac fits better on my new chair than my old chair.

My foot plate on my new chair is more comfortable than my old chair.

[systems-overloaded]

this is the trend afaik, about things in common with different alters (we have DID) that have different levels of speech and lanaguges comprehension.

(and then i have a question for nonverbal/semiverbal autistic people who might be reading this at the end, if they happen to see this? there is also a simplified question at the very end as well!)

~~~~~~~~~~~~~~~~~~~~

parts with little to no speech:

- their thoughts are as vibes and emotions mainly

- they cannot visualize, they just exist, and experience life through sensations as they come and as they go. they dont really "create thoughts", they just are, they exist and experience.

- theyre the happiest, have no trauma memories, or understanding of the concepts of trauma

- they dont front frequently because they need to feel totally safe, but theyre very happy and calm.

- (my assumption is they mightve formed pre-language learning, but i have no idea for sure. communicating with them, can be a bit hard to understand. they are more than just fragments though, but its hard to explain, they do have opinions, desires, autonomy, but its different in a way? idk)

parts that struggle with speech:

- generally happier and "normal" parts

- less intelligence, less reading comprehension and vocabulary. (theres a big range, but some would probably be considered intellectually disabled if they were a singlet)

- most of their thoughts are simple words put together (like, "want soup. warm. please soup?" instead of "hmm i want some warm soup")

- they are much more grounded into the body, exist within the body

- they do experience distress when fronting in the body, specifically due to nervous system dysregulation and sensory overwhelms.

- they do not hold memories or emotions of the major or minor traumas that happened to us.

- they do not tend to have anxiety or racing thoughts.

- their brain is very quiet, no background chatter or multiple streams of consciousness.

- theyre typically unable to visualize in their brain.

- afaik, for the majority with prominent speech difficulties, they cannot sing. (there might be a couple who can sing without issues, like how some with a stutter can sing without, im unsure how many can sing though.)

- due to being grounded into the body and its signals, our physical capabilities are much less. cannot push through pain, cannot do things others can.

the parts that have better speech (but afaik still have some difficulty with the motor aspect, although its minimal, i think. i have blackout amnesia to these parts. but this is to the best of our knowledge, correct.):

- higher intelligence, very smart. (interested and /understand/ concepts like genetics, medical research journals, quantum physics (to a certain extent), and learning other lanaguges.)

- tend to be extremely anxious, scared, even "paranoid" (though its legitimate based off trauma memories)

- they can visualize in their mind, with extreme vivid details.

- their thoughts are fast, with alot of parts talking in the background all the time, as well as just multiple trains of thought, and memes/songs/etc playing in the background.

- they have more knowledge about the things that happened to us, even if they dont always have access to direct memories (some do, some dont)

- they are extremely dissociated from the body. they exist above the body, sometimes experienced literally.

- they have more phsyical capabilities, because they do not feel pain at all until it gets to extreme levels.

~~~~~~~~~~~~~~~~~~

so my question for those who are nonverbal/semiverbal: id love feedback about what to call this? my speech issues are not simply verbal shutdowns or speech loss episodes induced by stress. id initially assumed that parts who were more traumatized would have less speech, but its actually the opposite for me. (personally i theorize that maybe the more traumatized parts are either way too disconnected from the body to be aware of how hard it is, how much difficulty speech takes. or they have more speech abilities, and maybe even intelligence, because they felt it was so important to be able to talk, and communicate one day about the things that were happening to us. so a bunch of energy was pushed towards speech abilities and brain abilities for those parts? im unsure, this is a guess. the other thing is they mightve been abused and forced to talk better, so they could appear "normal" and not be a stain in the churches reputation.)

a little of (non-trauma) history though:

i didnt say my first word until i was 5 years old, i had a significant speech delay. and id then gone through speech therapy and never actually finished, but the school wouldn't pay for more. i was an extremely quiet kid according to my mom. i would barely speak but i appeared happy and content she said. i did have desires to communicate, and would talk some, tell her about my day at school etc. but mostly i was pretty silent, in school especially. got in trouble for not doing "participation", of repeating things out loud, reading out loud, presentations. i just couldnt and i couldnt explain so id get in trouble.

but as a whole its fact that there are alters that can speak out full sentences and have a full conversation (like a drs appointment). i do not know if how much difficulty they have even matters, because they are still capable of it.

afaik, the majority cannot do that, they cannot have a full conversation like that. not without severe difficulty and/or pain, and then some cannot at all, cant even try.

what should i be calling this experience? would saying im semiverbal be okay? or no? because sometimes i seem to have alters than might be fully verbal? i know not to call myself (or my alters) nonverbal when talking to others (in personal journals i do classify different alters as semiverbal or nonverbal.) but with others, i say things like "i cant talk" or "im mute", or "talking is hard for me right now", etc.

no matter a label, im learning to use an AAC app and learning some ASL (though i struggle with moving hands/fingers right. like clumsy and slow, and some shapes impossible :c ). in the past, those who could push, do push. they push so much and hurt themsleves for other peoples conveniences, and its never acknowledged, and often those words arent even understood/heard/recieved. we have to repeat ourselves multiple times, and say it louder multiple times too. its so taxing, its exhausting (mentally and physically), and it basically causes actual pain.

its like, theres this brain and body disconnect, and my mouth, my tongue, and my jaw are all separate parts that im trying to consciously move, and im trying to get them to move through molasses, and they have a lag in response, if i can even get them to create the shapes i want. and with the pain, its like...knives/nails scrapping/slicing all the nerves/veins in my body.

but im trying to learn to do whats best for me, and what keeps me the healthiest and the happiest. and i think unpacking internalized ableism around using something like an AAC device is something thatll lead me there (to better health and happiness).

but im unsure about how to describe my experiences. afaik, everyone has /some/ degree of struggling to turn word-thoughts into mouth sounds... but id really like to hear input from people who are nonverbal or semiverbal all the time. thank you for reading if you did, and sorry that its so long.

~~~~~~~

simplified question:

i have DID, so i have multiple alters within my body. to my knowledge, we all have a hard time with making speech. some seem to have less difficulty and can have conversations (like at a dr's appointment), others struggle so much they can maybe force out a couple words, and others cannot create speech at all. we have varying levels of intelligence and varying levels of understanding of speech and language.

i had a significant speech delay, with my first word at 5 years old, and never finished speech therapy because the school stopped paying.

these speech issues are not just situational from stress, they are constant with those alters. every single day, for the majority of my day, we cannot create speech. we can make some speech sometimes, but its not even half and half with when we cannot make sounds at all. and the alters who can speak more, only ever front for maybe an hour or two max, and maybe twice a month.

i know not to call myself nonverbal. but would i be semiverbal? can i call me (this me as a whole person with multiple alters inside) semiverbal? or semispeaking? i want to hear from those who are semiverbal and nonverbal.

[pixierainbows]

Hiiii pixie! Do pixie accept dms? Would like be friends but scared bit so ask and send silly dog image before

Hi ! YES!!! Pixie always happy get messages from nice people ! Pixie be happy get new tumblr friend !

Just please to be patient with pixie . Because . Even with AAC devices , Pixie have lots trouble need long time for reply sorry . Really sorry Pixie take so long to answer .

[vixyz-aac-hoard]

Fossil

Gyroid, Gyroid Fragment

Bell Bag, Bell, 5 Bells, 10 Bells

[five-thousand-loaves-of-bread]

it easy change my voice on AAC.

easier than mouth speak people.

go to setting. go to voices. look, there entire lists. you can try them on like coats in mall. if don’t like them, in press of button you can have something new.

some, can change pitch. can make deeper. can make higher. can make faster. can make slower.

world in your tablet.

it hard change my voice on AAC.

my AAC. is my voice. is identity.

can change with press of button. but not so easy. we have history. my identity entangled with how AAC sound. how i sound.

change voice feel like loss of identity. feel empty. feel lost. feel like line carve in stone, divide me in past and future.

it hard change my voice on AAC.

do speaking people have to choose from limited list of pre synthesized voices? do speaking people run into other speaking people with same. exact. voice as them, same pronounciation errors, same annunciations, same tone, same exclamation?

do speaking people have to compromise within self and share that same voice with other people, a voice that yours but never fully yours?

it hard change my voice on AAC.

mouth speak people. as they age. mature. grow old. switch context. voice naturally changes. voice grows with them.

mine stops. mine frozen in time.

transition from one life stage to another. should i change a voice? to make pallatable for people around me, more professional, more mature, more “taken seriously,” but lose self in process?

it hard change my voice on AAC.

many choices for “standard” (< white) american (< USA) english. many choices for british english. some choices for spanish.

where my diaspora accents? where my languages?

can my friend not speak their mother tongue?

- thank you for give me outlet for voice, but you all that i have

from nonverbal full time aac user

(as in nonverbal all the time)

[beatingtheouijaboardallegations]

forever tired of our voices being turned into commodity.

forever tired of thorough medaocrity in the AAC business. how that is rewarded. How it fails us as users. how not robust and only robust by small small amount communication systems always chosen by speech therapists and funded by insurance.

forever tired of profit over people.

forever tired of how companies collect data on every word we’ve ever said and sell to people.

forever tired of paying to communicate. of how uninsured disabled people just don’t get a voice many of the time. or have to rely on how AAC is brought into classrooms — which usually is managed to do in every possible wrong way.

forever tired of the branding and rebranding of how we communicate. Of this being amazing revealation over and over that nonspeakers are “in there” and should be able to say things. of how every single time this revelation comes with pre condition of leaving the rest behind, who can’t spell or type their way out of the cage of ableist oppression. or are not given chance & resources to. Of the branding being seen as revolution so many times and of these companies & practitioners making money off this “revolution.” of immersion weeks and CRP trainings that are thousands of dollars and wildly overpriced letterboards, and of that one nightmare Facebook group g-d damm it. How this all is put in language of communication freedom. 26 letters is infinite possibilities they say - but only for the richest of families and disabled people. The rest of us will have to live with fewer possibilities.

forever tired of engineer dads of AAC users who think they can revolutionize whole field of AAC with new terrible designed apps that you can’t say anything with them. of minimally useful AI features that invade every AAC app to cash in on the new moment and not as tool that if used ethically could actually help us, but as way of fixing our grammar our language our cultural syntax we built up to sound “proper” to sound normal. for a machine, a large language model to model a small language for us, turn our inhuman voices human enough.

forever tired of how that brand and marketing is never for us, never for the people who actually use it to communicate. it is always for everyone around us, our parents and teachers paras and SLPs and BCBAs and practitioners and doctors and everyone except the person who ends up stuck stuck with a bad organized bad implemented bad taught profit motivated way to talk. of it being called behavior problems low ability incompetence noncompliance when we don’t use these systems.

you all need to do better. We need to democritize our communication, put it in our own hands. (My friend & communication partner who was in Occupy Wall Street suggested phrase “Occupy AAC” and think that is perfect.) And not talking about badly made non-robust open source apps either. Yes a robust system needs money and recources to make it well. One person or community alone cannot turn a robotic voice into a human one. But our human voice should not be in hands of companies at all.

(this is about the Tobii Dynavox subscription thing. But also exploitive and capitalism practices and just lazy practices in AAC world overall. Both in high tech “ mainstream “ AAC and methods that are like ones I use in sense that are both super stigmatized and also super branded and marketed, Like RPM and S2C and spellers method. )

[magz]

ID: Black cat laying down as 3 black kittens suckle on her. End ID.

Magz unexpectedly become responsible for abandoned stray cat, who gave birth around Magz's water heater (?) outside. (pet shelter full)

Magz mentally n physically disable black mixed person in "third world", in neurology treatment. Magz became nonspeak* and full-time AAC user, from degenerative condition.

If want help (optional, only do if can):

Added a few pet supply and helpful disability items to wishlist.

Magz have art commission open and pay links. (new links)

ko-fi and commissions + pay pal + wishlist

Previous Magz dono posts context: [December 2022] [March 2023]

[fagtionnow]

Hello, we were the NotepadCollective. You might remember us.

A few years ago I was very active within disability spaces on tumblr, primarily under the name Notepad/note/notepadcollective, however my last username with that online identity was @clownrecess . I was a larger creator and made advocacy posts talking about what it is like being an autistic AAC user.

Well, we have decided to return to disability Tumblr because the world is NOT an understanding place and I need a community that DOES understand me and my conditions, especially my NPD.

Anywho. Please spread the word around that I've returned, I need my little community back. Just under the new understanding that discrimination against anyone of any kind will not be tolerated. This new blog is absolutely not a place of exclusion like it was last time I was a disability blogger.

I love you all,

Note