#actually nd

Wanna know why?

Because when your to-do queue is 700 items deep and you add five new things to it each day, according to priority, almost all of it is never going to happen, even if you would really like it to. There's just not enough time in the world.

So!! If you're friends or lovers with someone like me and you keep wondering if that thing they said is ever going to happen, please ask them.

Because, personally, there is a good chance that if I suggested something would be fun to do with a friend and then didn't follow up on it within the week, I didn't know you were actually that interested, and/or completely forgot about it, and/or it got swallowed by the higher priority to-do items in the queue. If you ask me about it and say you really wanted to do that, your personal investment is going to make that item jump the queue by like 95%

It’s so strange to look back on how social I was when my symptoms were less severe and how (almost) outgoing I was

It's because so much work goes into masking. Talking to people in general, let alone when I don't actually want to, is exhausting in itself. Even the brightness of the sky can be overstimulating at times, and that's before I've done my shopping or done what I need to do, where there's too much talking and excessively loud music and workers who are often pressured into getting into your space before you've even walked several metres through the door.

What is considered background noise to some people is all I hear. I can't openly stim or do the things that make these jobs bearable because I'll get those looks from people that remind me that I'm not actually welcome unless I can be "normal".

I have to remember the script that I've created in my head for when I talk to the person I'm seeing. If they stray from what I had planned, I then have to create a new script on the spot without them realising that I'm on the verge of an anxiety attack because it's not going as I had hoped.

I have to make sure my facial expressions don't slip into what's natural, because it looks like i'm bored/disinterested. I have to make sure I'm making eye contact on occasions even when I don't want to because it's seen as disrespectful/impolite. Nobody wants to accommodate my needs more than they absolutely have to, but I spend every hour of every day - sometimes even in my own home - accommodating the people around me.

especially symbol based AAC, but all AAC, is new system n hard n take long time learn even when you literate & not moderately severely cognitively disabled. but also, “literate teen/adult independent learn AAC” not at all full face of AAC user community.

as in like. experience of theirs. not universal. independently motivated & able to look up different AAC options different AAC apps, compare n contrast. download app n immediately know how to use, or able figure out by self. first time use app n may be clunky n slow, but make sentence on first try. need learn AAC, but most of that learning is for where words are (if button based), how exist as AAC user in public with confidence, etc. those all valid but not true for everyone who need AAC, especially not developmentally disabled children (& some adults) with complex communication needs.

most developmentally disabled children (n some adults) w complex communication needs who need AAC, can’t just hand them tablet with symbol based AAC app or text to speech AAC app n then wait for magic. many of them developmentally delayed in way, not taught in way that fit them (e.g. gestalt language processors), n their language abilities behind peers, so they can’t read, can’t spell, can’t grammar, etc.

some of them need learn where word is not by read word, sometimes not even by understand symbol, instead is by other people press button n hear sound n associate that with meaning n location on AAC n symbol associate with it. in other words, they learning language alongside AAC.

for some their learn process look like, learn how use AAC say one word. n then much later, try make two word message, “want food” “go school.” “two word message” incredibly common goal for many these developmentally disabled children, teens, n even adults, that is something rare n truly extraordinary for that person that need be celebrated.

for others it look like learn by phrase (gestalt), then slowly break it down into smaller phrase n chunks n finally single words.

many of them babble (click random/seemingly random buttons on high tech device, stim with it, etc). but ultimately, won’t be able learn all by self. need be taught, see you accidentally spill water n crying, maybe you “feel” “sad”, n when that happen you “need” “help” from adult. need learn AAC by adults around them constantly model with it, constantly use it in conversation, show them how use. because they learning language along side it.

but also some of them don’t know what this thing in front of them (AAC… device, low tech boards or picture cards, etc) is. don’t know what communication is or you should do that. don’t know people exist who you should communicate to & with. heard many parents n SLP say they try model all time, try all kind of stuff, but child just not seem interested in it, don’t look at it, don’t touch it, don’t use it.

people who use AAC, not all them struggle with only speech. some them struggle with language, with intellectual/cognitive. some of them very developmentally delayed.

n some people, too disabled learn or use AAC. yeah, they exist.

for people who cannot use / cannot only use speech to be understood, AAC can be life changing. but is so much more complex thing. AAC still not as widely used n accepted n properly taught n supported as should, some parents n professionals n schools still many pushback n refuse. but sometimes answer to “have you tried AAC for them” is “yes, but they need long time n lots help to learn n we not very far yet even though spent long time on it” or “yes, but they simply not show interest even after constant model” or “god, wish can, but insurance only cover if show some amount of communication competence n ability use AAC, while only give 1 month trial, which simply not enough time” (wide spread thing that happen) or “yes. many types. it not work.”

So please share your experiences and feelings in regards to feeling like you need to just "get better" but can't or have hit so many roadblocks that you're miles away from where others are at.