#ezra talk aac

[perplexingluciddreams]

Sometimes when there is not a symbol for a specific button I want on my AAC, I just find a symbol that looks vaguely similar and use that. As long as it is close enough to make me think of it when I see it, then it's okay as a symbol.

I always feel quite clever when I use a trick like this. For example, this time I use "hot dog bun" symbol, for the button "glasses case"! 🤣

It's a bit silly, but it is the same shape and size, and even though it is bread colour, it reminds me of a glasses case! As long as it works! 🤷🏻‍♂️😆

[zwentner]

LIV042 Die Position Halten

Welcome! Lost in Vinyl hat in dieser Woche ein besonders schönes musikalische Trainingsprogramm für Euch auf Lager: Neue Releases von ‘The Streets’, Phoebie Bridgers, Makaya McCraven und mehr. Nerd-Talk über Bonnie ‘Prince’ Billie’, The War on Drugs, CHAI und mehr. Also, bleibt fit und lasst euch nicht unterkriegen.

  15.04.2020

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Shownotes LIV042:

Phoebie Bridgers, Punisher – Baz Luhrmann’s, Rome & Juliet (split) – Gil Scot Heron & Makaya McCraven, Wer’e new here again – Makaya McCraven, Universal Beings – Ezra Collective, We out Here – Tommy Guerrero, Road To Knowhere – Johnny Jewel, Windswept – The War on Drugs, Lost in the Dream (Turntable Lab) –  CHAI, Punk – CHAI, Tiny Desk Concert – Bonnie “Prince” Billy, Singer’s Grave A Sea Of Tongues – Bonnie “Prince” Billy & wife Elsa perform Merle Haggard’s ‘Bad Actor’ with their dogs on morning TV–  The Cardigans, LIFE

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[perplexingluciddreams]

An average day in my life

I want to make a post about an average day in my life, with higher support needs nonverbal autism (with continued late regression), severe ME/CFS, low mobility, hypotonia, and other health things. I need a lot of help with most things, and due to my conditions my everyday life probably looks quite different than many people's.

I tried to write this several times. I started with AAC, but I couldn’t see what I just wrote, so I got lost and jumped about too much. This time I made myself some questions to answer, so I can still use AAC to help with the words, but not get so mixed up. Some of this is written with AAC, some is typed.

Where do I spend most of my time? How do I spend most of my time?

I spend the large majority of my time in my bedroom, and the most of that time is spent in bed.

In bed, the things I do is: watch DVDs or other things on laptop, edit AAC, practice/write with AAC, play games on phone, listen to music.

When I am not in bed, I am listening to loud music in my swing! Best way of regulation for me, keeps me calm.

What does my bedroom look like, how do I have things set up?

I sit up in bed with a big wedge pillow and two normal pillows behind me. I usually have my laptop, iPad, AAC device, DVDs and DVD player, and fidget toys (dummy, chewy, tangle) on the bed with me. I also have an overbed table which always has my glasses and case and juice bottle on it. I change around what is on the table depending on what I am doing at that time.

My LED lights in bedroom is usually on orange or yellow colour, with lights fairly dim. The curtains and blackout blind is always closed.

I have a fan and book light always next to my bed. I have a weighted blanket as my duvet, with five other varying types of blankets on top of it.

What are the other activities I do?

I have some other activities I occasionally do with help and prompts. Sometimes I go downstairs (with stairlift) to watch TV and/or do walking (physiotherapy, walking back and forth with or without AFO braces). I also do walking upstairs, because getting downstairs is a real challenge.

I rarely remember that I have options other than the things I see in front of me, so my parents have to give me choices.

Occasionally Mum ask me if I want to play cards, or do something else not normally do. It depends on how I feel and how loud my brain is, but sometimes I say yes.

What are the few things I can do independently on a daily basis?

I can put shoes and socks on, and take off, by myself! Only with same pair of stretchy shoes, just pull on. I do this several times a day because I wear shoes in swing, but not in bed. So it is a strong motor path.

I can change my hoodie/take it on and off by myself.

I can go between my bed and swing by myself, no prompt. I can walk to go to the toilet and change nappy (diaper) by myself.

I can brush my teeth as long as my toothbrush and toothpaste is brought to me. Sometimes I also need a reminder, or I forget. I am more likely to forget in the evening. I remember better in the morning because I don’t like the taste of my own mouth.

I can drink from my juice bottle and feed myself.

I can put DVDs in and out of DVD player and plug it into laptop. I can choose what I want to watch on a few streaming services. I can navigate a few social media apps, and can even post/message on a couple.

I can use the two different remotes to control my LED lights and sensory light projector.

What is my main struggles and difficulties in an average day?

I can't do much without prompts so these two things (bed and swing) is basically all I can do on my own (I can also go to the toilet without a prompt most of the time, but sometimes I get stuck). I struggle to initiate tasks and transition between tasks. I also can only make my body go on strong motor paths (movement sequences that I do over and over that is strong in my muscle memory), and there is only space in my brain capacity for a small amount of these motor paths at a time. Learning a new motor path and making it strong can make me lose a previous motor path (usually whichever is weakest at that time). This is very limiting.

Even with the pillows I have, it is not enough support. My body is too weak and floppy. My posture is bad and I slide/slump down so I am closer to a lying down position than sitting. I am always in a lot of pain, so I shift around a lot trying to get comfy, but it is never quite right. This is even more for when I sit in swing (or anywhere else), there is next-to-none support there.

If I could, I would be in my swing all the time! But unfortunately I have very low energy due to ME/CFS so a lot of rest is necessary. I find this hard because I need to stim and regulate constantly.

It is necessary that I spend much time alone in my room. If I didn’t, the smallest things would send me into immediate shutdown or meltdown. I can’t be around people much at all, even voices noises is too much. Usually I am only around people for the time when they help me with something, or bring me something.

When I do be around people, even with AAC it is very very difficult for me to communicate - I can do a handful of simple signs but anything more complex is so hard to get out that it usually has to happen when I am on my own in my room (like when I write a post like this). I am sad that I can’t have important or deep conversations with a person in the same room. Most of the important things I communicate to Mum is through Tumblr or WhatsApp.

I am oversensitive to so many things because of sensory issues. I am always dysregulated and I spend so much time trying to keep myself calm with swinging, with out making my health worse.

Often I am much too tired and sore to go downstairs so I am stuck in my bedroom most of the time.

I don't feel many body signals, like my bladder. When I don’t feel the signals at all (or not until too late), combined with getting stuck and not able to initiate go to toilet fast enough, I have accidents. This used to be something I could just about keep on top of, but with regression I no longer can manage it, so I have to wear nappies (diapers). This also adds another task (change nappy) that I have to use my limited brain capacity to learn and hold onto.

I am so fatigued and in pain from doing small things, and my body response to fatigue is often a big trigger for many sensory issues. This often becomes a downward spiral of fatigue response -> sensory bad -> big stim to calm down -> stim makes fatigue worse -> more body fatigue response, etc.

What is my morning routine like?

The first thing that happens in the morning (approximately 9am) is Mum or Dad comes to my bedroom with breakfast and medication. They help prop me up in bed with a big wedge pillow, and two normal pillow behind me. They give me my headphones (I wear almost all day, every day) and help put all my things around me on the bed. They also give me my toothbrush and toothpaste. In the mornings I can’t communicate much at all (only occasionally a few signs), can’t look at another person or do anything that would overwhelm me even a wee bit. It would cause immediate shutdown or meltdown. Shutdown is more likely for the morning time.

What is my mealtime routine like?

Mum or Dad (or very occasionally sister) brings me my food, and if it is a messy food then I put a tea towel over my chest so I don’t get covered in food. I eat while watching something usually, because I need the distraction to not get so stuck. Every time I get new meal or snack brought upstairs to me, I get a fresh bottle of juice also. The bottle is approximately 450ml, and I have 3 meals plus 2 snacks each day. I also get a bottle of water (not juice) brought up with evening meds, so I don’t get sugar on my teeth after I brush them.

I eat the same snacks at the same times every day. I have the same exact breakfast every day, and it has barely changed since I was quite young. I have two lunches, it is the same except for sandwich filling - I eat one for weekdays, one for weekends. Dinner varies, but there is still a predictable amount of choices, and often I eat the same dinner for the same day of the week. Mum sometimes tells me what is for dinner, if it will be different than the usual dinner for that day of the week, or if I ask. But I usually forget by dinner time anyway! 🤷🏻‍♂️

What is my bath time routine like?

With bath, Mum always helps. I need a lot of prompts. I get confused and lost with all the steps. But I have gotten better with practice, and each step have a stronger motor path now. I need Mum to tell me what part comes next.

I use a bath lift to get in and out of the bath.

I can do the physical washing part mostly on my own, sometimes I ask for help with my back. Mum gives verbal prompts and puts the right soap/shampoo in my hand or on washcloth.

Sometimes even with prompts, my brain confuses the steps or the motor paths, and my body does the wrong thing. This happens more recently, because when there is a complex sequence of separate (at least it is stored separately in my brain) motor paths, I can go into “loops” of do same thing over and over. Or my wires get crossed and I simply do the wrong movements.

I can also mostly dry myself (I sit on toilet seat to do it), but Mum always does my back. I can’t dress myself, so once I put on nappy by myself, Mum puts my top on. Then I walk to bedroom and Mum puts my trousers on while I sit on the edge of my bed (it is a better height that sitting on the toilet seat). Then Mum opens deodorant and clicks it up, I put it on myself.

What is my evening/bedtime routine like?

I have poor sleep, usually, and a really weird sleep schedule! My parents go to bed at approximately 10pm (sometimes Mum a bit earlier), and Dad always comes in to tell me goodnight. But I am awake much much after that (usually between 1-3am is when I finally go to bed for sleep). Sometimes I still swing when my parents is in bed, but I try not to swing too late because it can click and make noises.

I stay up and watch things, or play games on phone and listen to music. I often get stuck and cannot transition to go to bed, so I force myself awake for long after I could probably already go to bed.

When I finally manage to force myself to do the bedtime routine (or when my body is so tired it force me), I have to move all the things off the bed (some go on overbed table, some go to charge on the other side of the room). I also then change hoodie from day hoodie to sleep hoodie. I also move big wedge cushion and extra pillow down onto the floor. And put special cushion under my sleep pillow so it is at the perfect angle. Then, finally, I can lie down.

Sometimes I still go on my phone after that, usually to read fanfiction, if I can’t relax enough yet. I also rock back and forth on my side to soothe myself, I have done it since I was very young. I have to put my fan on to sleep, the noise and the feeling on my face is necessary to fall asleep, and it helps keep my temperature okay.

Then, the cycle of morning starts all over again!

[perplexingluciddreams]

more details of experiment edits on AAC:

first i will show 3 pictures of Supercore 50:

how it looks automatically without any edits

my current grid set that i use for communication

the version of this grid set i added just to try colour changes and other visual edits.

[Image description: 3 images of the same vocabulary grid set in Grid 3, called Supercore 50. the first image has rounded corners on buttons, a white background, bigger spacing, and text labels on every button with text above symbol. second image is similar looking with same rounded buttons, but less spacing. is different by black background, text label removed from folder and menu/function buttons, text below symbol. third image is very different looking from other two. same black background, menu and main folder buttons have black background with simple coloured symbol, mainly yellow. no folder buttons have text label, and many have simplified symbol. all button colours are altered in tone and shade. all darker colours, easier on the eye. the "little words" buttons are changed from almost white to dark grey with yellow text. End ID.]

here is explanation:

added new version of my grid set (Supercore 50) to just play around with and change colours and see what works. didn't want to mess up my actual grid set with all my personal edits and added vocabulary. didn't go to bother of making it all "uniform" across the whole device (because is time consuming and i will have to do that eventually on my real grid set).

mostly just tried out different colours. and how to make home page as easy to visual process as possible. didn't change colour coding (for example pronouns yellow, verbs green, adjectives blue, little words grey-ish - that all stay. just change tone of colours to not "attack" eyes).

eyes can't cope with a lot of "whiteness" in any colours, especially on a screen where there is so much white/blue light already. makes much sensory overload and bad headaches. pastel colours or very bright neon or light blue/purple/yellow/grey... not fun. brain simply skips over any blocks of those colours cause it can't get past whiteness to see what is on the button.

in Grid 3 edit menu you can change colour of button - there is a palette of pre-made colours, but you can also do "adjust colour" and choose custom colour there. and there is something called "button styles" so you can just edit one button how you want, then say "update style" and it will change all buttons with that "style".

i worked out that turning down "saturation" and "luminosity" helps me a lot. then the colour doesn't "attack" my eyes so much, so i can actually search the screen for the symbol/word i want. better visual scanning ability.

also removed borders on buttons. just adds extra stuff for eyes to get "stuck" on. it looks cleaner without border.

On Grid 3 there is also different button "themes" available (different from button styles), which changes the entire automatic look of the entire grid set with just change that. changed from "modern" to "blocky" theme. because there is a slight "colour gradient" on buttons with "modern" theme (I think🤷🏻‍♂️). meaning there is more highlight at the top of the button on more shadow/darker at the bottom. makes it hard to see the symbols and text because it is not "flat" looking. to me the "modern" theme looks slightly bumpy and 3D, the "blocky" theme looks flat. and brain can't process 3D (especially not at same time as try to search for words and scan screen).

i also made the "menu" buttons or "grid functions" buttons have black background (to match black background of entire grid set), with symbol in yellow. and remove text labels for these buttons and some folder buttons. this helps because then only the word buttons "jump out" at brain. so there is less "bulk" of the screen to process. and the "function" buttons have only simple symbol, so can easily find!

this is all still only changed in the blank version of Supercore 50 that I added for this specific purpose. it is a HUGE change to my AAC. so i can't just change it all at once. it will have to happen in stages. and i am still not 100% sure of all the changes. (for example i don't really know what to do with the folders. don't like how they look right now...). so i have to be very confident in a change before i can make my real grid have it.

(also there is still folders and buttons i haven't changed at all. just mostly did home grid so i can see the difference. still working on it and will be long time until ready to change my real AAC).

i will keep updating on the changes!

[perplexingluciddreams]

Today I spent much time editing AAC! The main thing I did is, make all top bar navigation/action buttons have only picture, no text label.

[Image description: a picture taken of the screen of an AAC device. It shows Supercore 50. The top bar has five navy blue buttons and a white speech bar. There is two buttons to the left of the bar, and three to the right. In order, they are: magic wand, jump back, speech bar, speak, delete word, clear. None of the navy blue buttons have a text label, only a white symbol. End ID.]

The symbol is easier to process on its own for me. Faster and less overwhelming, already reduces amount of words on the screen that my eyes dart between. My brain is determined to read every word that it possibly can, even if the meaning is not processed at all (which it often isn't).

So having a label on "action buttons" like this, means I struggle to connect the words on the button with the actual action it does. So then I press things I don't mean to, and it increases motor impulses (like pressing automatically buttons I don't want/mean to press). Simply because I see words and brain goes "Words! I know what those words look and sound like!! Press words!".

The lack of labels will make it less distracting and give a better distinction between "writing buttons" and "action buttons".

I had to go into EVERY folder and copy-paste the same top bar into each one. There is even three different variations on the top bar (one for home page only, one for self-closing grids, one for non-self-closing grids). The only difference is whether the button in top left corner is: magic wand, jump home, stay here. There is so so many folders and sub-folders in Supercore! So much time editing. But so worth it!

I think I might remove button labels from other places (like folders I frequently open by accident/impulse). It seems to help 👍🏻. Very glad I figured this trick out!

I did some few other things, so if anyone wants to see (specific pages or in general), just ask!

[perplexingluciddreams]

Hi! if is okay , can you please show what is in daily life folder ? trying to make my own but ended up just doing ADLs and wonder if there is something I am missing . Thanks!

Yes, I can show! First thing to understand, is how these two right side columns work in Supercore. When you click a folder there, most of them only changes the cells on those two columns (excluding a few, OR unless there is another link within there, to open up to a full-screen folder).

Here is how it looks at the home grid:

[Image description: Two right hand columns in Supercore 50. Full of cyan colour folders with symbols, black colour text label, and a black cut off top right corner. Order from left to right and top to bottom; daily life, leisure, chat, my news, position, places, time, feelings, topics, education, messages, spelling. End ID.]

For daily life + leisure folders, it opens to more folders within. I will put pictures, so you can see!

This is the first layer within "daily life" folder:

[Image description: More two columns of cyan folders. From left to right and top to bottom; toilet, AAC, eat & drink, accessibility, comfort, emergency, scheduling, medical, going places, travel, sleeping. The bottom right corner is a link to more. End ID.]

And this is what shows when you press "more":

[Image description: Left to right and top to bottom; dating, shopping, eating out, cooking, washing, learning, dressing, blank, job, blank, banking, blank. End ID.]

I cannot show within every single folder, but I will give examples. And if you want to see a specific one, just ask!

Here is the "sleeping" folder:

[Image description: Sleeping folder with the words; time, alarm, read, book, night, dream, pillow, hug, sleep, tired, bed. In the top right corner, there is a "phrases" folder. End ID.]

And here is inside the "phrases" folder. There is a separate phrases folder for each separate topic, with different phrases. (But some phrases is in every/almost every folder, because they are common. Like, "I need help" for example).

[Image description: Phrases folder from within the sleeping folder. It has common phrases such as "I need help", "I can do it", "I don't know". And also specific phrases relating to sleep, such as "I need to set an alarm", "please reposition me", and "good night". End ID.]

And here is the AAC folder, which I edited myself to have words I will actually use, relating to this topic. I will probably continue to edit the words inside these folders, because there is some spaces taken by words that I can easily find quickly in other places.

[Image description: Similar to the sleep folder, there is the phrases folder on the top right. The buttons are; AAC, device, word, Supercore 50, Grid 3, keyboard, sign, communicate, understand, communication, speech. End ID.]

The phrase list for the AAC folder is similar, with some same common phrases. And other specific phrases such as, "The word is not on my device", "Please add it to my device", etc.

It is quite complicated to explain every single part of how these right side columns work, but there is videos on Smartbox YouTube account that shows a lot about Supercore 50, if you want to see more! And I am happy to show more specific things, if you ask 😊👍🏻

[perplexingluciddreams]

Today afternoon was doctor appointment. It went quite well and it was with the really nice doctor. Mum dad both come, I hold mum's hand and walk and wait patiently and I cope much better than in the past.

Mum and dad talked to doctor and ask about what is the options for top surgery. Wait time for gender clinic is very very long, so we want to look at private options but that is hard to find. And even then it maybe still needs to go partly through gender clinic for counselling to make sure I am making a definite decision.

I don't like to think about how long it might take, I have already waited so so long.

At the appointment mum gave me a prompt to play the button with the script she wrote for me about why top surgery is so important for me. (She see last post and offer to write it for me with all my reasons that I say in the past).

Doctor doesn't have immediate answer but she knows some people to maybe ask about it. It is complicated situation.

I write all this new device and switch, even have to take a break for dinner because it takes so long!

[perplexingluciddreams]

even 1 day of not hoodie and the movement pattern is much harder

(^message I write to mum earlier on AAC)

I have bath every other day, and only change clothes at bath. I wore onesie, with not hoodie over the top, and only that short time of not practice movement path makes me get stuck and slow and muscle memory hard to access.

I have more trouble with body stuck and slow and “glitchy” recently. I want to explain more but words hard so not right now.

I have other messages from AAC that maybe I will share in future posts. Maybe some posts will be fully from AAC, maybe some a mix of AAC and typing (like this one). Maybe some about AAC itself, maybe some just general random.

I will tag them all “ezra talk aac”.

[perplexingluciddreams]

I am finally watching Supergirl!! I have had the DVDs for a long time, but it is very hard for me to watch new things and sometimes my brain simply will not let me. I started watching several times, and just couldn't keep focus or process anything or stay calm.

This time I started from where I stopped last time, to not get angry from having to watch the same episodes again again again.

I don't fully remember the first half of season 1 but that is okay because this time I can keep watching! I didn't get stuck or frustrated, and now I am on season 2.

I just finished S2 E13 "The Luthors". I now understand Supercorp (Kara and Lena) and why people ship them! Why in the world would Kara be with Mon-El if she is like that with Lena?! I say this as someone who can't read social cues, I only get my information from what they say to the other. Usually I don't feel bothered about not real people relationships, but I am somewhat invested in this.

I hope I can keep watching and not get stuck again.

[perplexingluciddreams]

Today I am setting up my new AAC! I connected my phone, set up email, WhatsApp, and made a copy button so I can write on here and post to Tumblr!! Now I can make much more posts with AAC I hope. And I think if I write more for Tumblr, I will find what words I need to add. And practise will make me faster!

[perplexingluciddreams]

Once again experiment with colours on AAC for help visual processing hopefully.

I struggle a lot with bright white light from the screen. And make my eyes look where I want is very hard. And visual scanning screen to find word/button is very hard. I somehow need low contrast with calm/dark colours (not colour with a lot of white "mix in") AND have some few buttons "jump out" so can easily notice and target with finger even if I can't make my eyes look there.

I made a copy of my vocabulary grid set (Supercore 50), to play around with colours. I don't want to mess up my actual grid that I use (with all my added words and changes) - that is why the copy.

Unfortunately I can't know if it is good, because to do the editing the "menu" part with all controls and edit tools is all very bright white. So I have to stop after a short time and try use it at other times. Because already sensory overload headache after short-ish period.

I want to tell more details about the specific edits. But tired and eyes weird from white light. And left arm hurt So Much ☹️ (semi-related).

Anyway. Maybe I will tell more later if I remember.

[perplexingluciddreams]

hi , thank you for post about daily life . may I please see going places and travel ? having hard time telling difference , which words go in which folder . thank you !

Yes, of course! It seems to me like "going places" is a bit more focus on the destination (where you are going to), and "travel" is more focus on the journey (how do you get to the place).

Going places columns:

[Image description: Two side columns in Supercore 50, it is the going places grid inside the daily life folder. The top right corner is phrases grid button. The other buttons say; later, bus, car, home, school, work, shop, walk, college, there, drive. End ID.]

Going places phrases (only the specific ones for this grid, not showing the general ones that is the same in every phrase grid):

[Image description: Four phrases buttons that say; I want to go now, I want to go later, are we nearly there, do you know the way. End ID.]

Travel side columns:

[Image description: Side columns for travel grid inside daily life folder. Phrase grid in top right. Other buttons say; taxi, bus, next, leave, train, arrive, single, travel card, return, there, ticket. End ID.]

Travel specific phrases:

[Image description: Four phrase buttons for travel grid. It says; What time does it leave, what time does it arrive, it is delayed, where does it go from. End ID.]

I hope this helps! Just remember these columns are like this so that you can easily make a fast sentence using the core words and the side columns. So it doesn't need to have every word for these topics, just the most common/useful ones, to be fast. There is bigger "topics" grids with only noun words that you can go to as well, but they open to a full screen grid. So the side columns are just for when you want quick access to some "fringe" vocabulary with also access to "core" vocabulary.

👍🏻😊

[perplexingluciddreams]

Realized supercore 50 look very similar to grid for iPad.

Are they the same thing or from the same company? Or is supercore 50 just for the type device you have?

Supercore 50 is the name of the specific grid set that I use. Grid 3 is the name of the overall software, made by the company Smartbox.

Grid 3 is on Windows devices. Grid for iPad is a version of Grid 3 that is for iPad. It is also made by Smartbox. They are very similar.

Grid 3/Grid for iPad both have many different grid sets available. Many options for symbol communication grids, and also there is text communication grids. And interactive learning, accessible apps, computer control, environment control.

There is slight differences between the two - some things that are available on Grid 3 are not available on Grid for iPad. For example, the WordPower grid sets (WordPower 60, WordPower 100, WordPower 100 with keyboard, WordPower 100 for Switches), are only available on Grid 3. And there is more accessible apps in Grid 3. Overall, Grid 3 has more options available than Grid for iPad, I think.

Supercore 50 exists in both Grid 3 and Grid for iPad. It is one of the more common used grid sets on Grid 3, I think!

The physical device I use is called Vibe 10, by the company Jabbla. It is a Windows based device. So I use Grid 3, not Grid for iPad.

I hope this makes sense!

[perplexingluciddreams]

more and more recently I am slow stuck

can only do learnt motor loops and paths

scary bad memory alone

scary alone can't tell remember bad feel same as before

bad brain

swing help not stuck

rhythm

I get very badly stuck recently, first time in a while to freeze that much and completely unable to break out. I could use my hand and text slowly to people but mum didn’t reply (phone away, she didn’t hear). It was waiting for mum that make me get stuck to begin with - I was in between tasks and wait for mum to help transition and then get stuck waiting, I think it is worse freeze because of pre-existing transition which makes more anxiety a lot.

I eventually remember dad and sister exist, and sister reply straight away to text and get mum and mum help to get moving again. With mum reassurance and comfort I start to be able to use both hands more and control where my eyes look. Then I write this on AAC (^).

[perplexingluciddreams]

very early night for Ezra tonight.

lots of pain and tired. need rest!

saw best friend today, so lovely. make me so happy. also tired - but so worth it! i got lots hugs and hand holding and stroking and was so nice. 🥰 and did talking conversation a bit with AAC, i feel proud for that

also big new thing of actually wear AFOs. very hard physical effort to put on take off. and didn't manage that much time today after so long yesterday, feet still sensitive to the pressure points. and more higher pain level overall which makes harder to tolerate even small discomfort.

anyway, goodnight everyone 💙

[perplexingluciddreams]

Welcome to my blog!

My name is Ezra but everyone calls me Ez :)

‼️‼️ this post is in process of edits!! some things in this needs change to get meaning across better. language issues means i "borrow words" to try express things, but often don't understand the words i borrow. so i end up saying things i don't mean. this applies to whole blog - i am in process of doing a clear out currently. ‼️‼️

Most important stuff:

‼️ I have a lot of trouble with language. Have both receptive and expressive language delays. May word things poorly, may misunderstand/not understand things. Have social problems and struggle with interaction.

My writing on the internet is not indicative of my overall level of communication.

Please be patient with me!

Some facts about me:

🧩🌈 I have autism

💬 I am (fully) nonverbal

📱I am a full time AAC user (Grid 3 - Supercore 50)

♿️ I have other physical disabilities (severe ME/CFS, hypotonia, FND, suspected autistic catatonia)

👨‍👩‍👧‍👦 My parents are my carers

🏳️‍⚧️ I am transsexual

Diagnosed with autism age 15. However, my autism was recognised by teachers and likely other adults at much younger age. Visibly autistic.

Fully nonverbal due to regression. Was semiverbal growing up (with unreliable speech- apraxia definition).

Not diagnosed with autism level because live in UK. Don't know what level or support needs I am considered, but need help with most bADLs and can't do any iADLs. Have continued (late) regression, still losing more skills.

I have restricted interests so only follow small amount of people and have a lot of tags blocked. If we interact regular basis, I consider same level as mutual! Just because don't follow, don't mean not like!

I try to tag things, but I get categories confused and sometimes it is a bit of a mess! Sorry, I try 🤷🏻‍♂️

Tagging system:

Personal tags:

#words from my head = Rambling, lighthearted, or short posts. Sometimes posts about my day-to-day life. Not serious topics or anything I spend a lot of time to write and edit.

#fragments of an idea = Rambling and disjointed posts, long or short, about any topics. Often have no flow and jump from one thing to the next. Usually just a first attempt at getting words out for one or more things, then there may be a more "put together" post in future.

#from the chaos of my mind = Complex, long, serious posts, with effort put into writing and editing them.

#ezra talk aac = any posts I write partly or fully with AAC, or about my personal AAC device/software. (AAC = Augmentative and Alternative Communication)

#snapshots of my life = My own pictures I take, some will have me/my face in them, some are just of things I do that I want to share.

#borrowing words = When I reblog something and relate, or the words match up with something I want to say, I am “borrowing words”.

#ezra watch = Posts about or relating to media I watch.

#ezra reads = Posts about things I read.

#ezra sews = Sewing and mending.

#ezra puzzles = Jigsaw puzzles.

#ill never get any sleep at this rate = Ongoing saga of posts, either about insomnia, or posted at a time when I really should be sleeping…

#reblog = Self explanatory, any reblogs.

#self reblog = When I reblog my own post with an addition. (If someone reblogs my post and then I reblog again to reply/add on, it will be tagged with both “reblog” and “self reblog”.)

#🍋 anon = Friend who sends asks :D

Other things I always tag:

#ask

#anon ask

#swearing

#long post

#very long post

#image

#gif

#video

#link

#described

#undescribed

#flash warning

My interests (some special interest, some short-term fixation):

Moomin

Sewing! (especially visible mending)

jigsaw puzzles 🧩

BBC Merlin

Buffy the Vampire Slayer + Angel: The Series (/Buffyverse)

Marvel Agents of S.H.I.E.L.D.

Person of Interest (especially Root and Shaw)

Music (used to play clarinet, most important to me ever. But love all kinds music, especially right now metal!)

Languages (trying learning Swedish. Struggle but enjoy slow learning!)

Here is a post where I explain my journey with communication throughout my life:

Here is a post where I write about my experience with gender as a nonverbal autistic: