Monday, November 1, 2021

Autistic Speaking Day:AAC, Paganism, faith and communication access

 Trigger warning/caution notice, this post discusses religion, ancestors, food, pagan and holidays





It is just after Halloween, and for many people this is a one day holiday, for me those who don't know I am pagan and for me Halloween more of a day I mark in or as part of my Samhain, which is a larger Holiday period? festival? I'm not sure the right word for it,  Samhain (pronounce sow-in)  is one the the 4 fire festivals in Irish paganism, I am not going to give a long i depth lesson on Samhain or a history lesson, I highly recommend learning about it from actual Irish people, aka people from and living in Ireland who are part of the living culture there.  I would also recommend looking at things like blog posts and videos by native sources, I would recommend checking out writings and videos  by Lora O'brien as a starting off point or as well as out dú, and for Irish paganism specifically there is the Irish Pagan Scool. These are all good native sources I recomend for starting your own research into Samhain and Irish paganism.links provided below.

 there is a lot when we are celebrating Samhain. From larger family discussions Ancestor work, deity work, studying, Divination,meditations, cleaning, meal prep and cooking, silent suppers, turnip carving, planing out company, putting out offerings and so on,

Before during and around Samhain there is a lot of discussion around what things we want to keep or get rid of,what is working and what isn't, both for things like do we really need all these papers, to do we need a better system of organizing, how can we organize better, to even more complicated family and relationship talks, discussing what things we want to keep and build on for the next year, anything we want to add for the coming year, this could be as simple as “do we want to get a new stuffed animals too do we want to consider expanding the family in some say ie, pets, babies, partners, found family etc. also a lot of discussing lighter things like decoration, a lot of discussion around foods and cooking, setting up altars, Divination (such as tarot cards pendulum,a few Divination “games,” I don't know names for), costumes a well as things like games.carving turnips, plans for guests and so on. And this is all for just one of the major holidays!

 These are all things I need to be able to plan and discuss with people who are around me or who will be doing any of these things with Me. However the words I need for this aren't in any of my AAC system base vocabulary sets. This means I have been also working on building up and editing my AAC boards to be able to talk about, discuss, participate and fully communicate during these holidays as well as to discuss my own faith and practices.

This is because the majority of AAC systems are Christian heavy, what I mean by this is whenever you get an AAC app or device, once you are all set up and you load you starting vocabulary, if you have a folder or a place for words in and around religeon they are almost certainly going to be nearly if not all Christian based, if you are lucky you might have the word “Judaism and “Islam”  and /maybe/ 1 or 2 other religeon and possibly 1 or 2 items from said religeon,  but it will be filled tpwuth things for Christians, when it comes holidays will be find almost all if not all the Christian and likely regional holidays, but you are unlikely to find words for any other religeon holidays, 

While I am very happy Christians have a solid base set for discussing their faith, holidays, deities and religion, more AAC systems need to to be inclusive of other faiths and religeons, I. Don't expect most to include things like paganism, as that is such a broad, paganism is just extremely broad with so so many paths, many pagans aren't on the same path I am, though having a few basic words might be nice, but I guess hard to agree on, however the holidays and more words for at least the top 6-8 religions seems like a basic low bar for AAC and communication access,  it requires actually including people from those communities at the table when designing vocabulary sets, making sure they are included but again that seems pretty important and should be set as the baseline. 

It's really important for people to have words to discuss their faith and for many it's and intrical part of their  own culture and daily life, and they need access to these words, additionally they will want to talk to friends who may not be in the faith about things they are doing, maybe invite people to their event or so on.  It's important for others not in those communities to have word to interact with family and friends of different faiths. To see and have words for discussing with thier Jewish, Skih, Hindu, Muslim, buhdist,Christian etc  friends family. And again everyone should get to have words for their holidays and for their faith and their culture in their communication system, it shouldn't have to be hours to months of extra work just to add even the basics, not to mention having to put in all the work to come up with images for anyone using a symbols Set.!

This for me when it comes to paganism this  has meant I have had  to do a lot of editing and rearranging and figuring out where to put words, and how to organize not just holiday, but also tools and aspect of my own faith  beliefs and practices, and I need to make these fit within the lay out of my system, I also need to keep the common mainstream and Christian holidays, after all, the majority of people celebrate them, even I celebrate most of them, things like Christmas and Easter with my non pagan family, and we also do Christmas in addition to solstice here because why not? as I have said, I have family who celebrate it, and also need to keep most of the national and regional holidays too.  (Though some have been removed or changed,) I will still need and want to discuss common mainstream ones with our Christian family members, but I also want to be able to discuss things within our Pagan multi religious household.

When it comes to editing my AAC for my own faith and holidays There is far more than  just Samhain I need to add ford's for, after all there are other festivals and daily workings too,  each one needs careful thought and consideration, and as I learn more or as my practice grows and as things in my life change will need to continues to edit and adjust my words and vocabulary. it's a lot of work, I am nowhere near finished. I will likely never truly be fully finished however, It is important work,  so it is work that I must do, one day, maybe I will pass on these vocab sets to others who want and need it.


Irish Pagan school:

Lora O'Brien log

Lora O'Brien youtube

Tuesday, July 27, 2021

Survey to get Geailge (Irish) AAC!!!!!

Dia dioabh (Hi everyone,) 

Below is a survey by trinity college into research for making Irish AAC!! I'm going to talk a bit about AAC,AAC stand for Alternative augmentative communication,  basically these are methods and forms of, non-oral, speech based communication used to help with communicating for  anyone nonspeaking, unreliable intermittently speaking, and anyone with any communication based disability or disability that impacts communication or oral speech such as Autism, cerebral palsy, AL'S down syndrome. Migraine disorders epilepsy etc

This is something that has been something that's been really important to me for a long time ó I'm sharing it here to hep get the word out, 

this survey is part of really critical research into providing AAC as geailge (I irish language. Thus is critical for making sure nonspeaking, unreliable intermittently speaking, and anyone with any communication based disability or disability that impacts communication or oral speech such as Autism, cerebral palsy, AL'S down syndrome. Migraine disorders epilepsy etc can have full access not just to their ciriculum but their community and native language.  Le do thoil  (please) help and fill out the survey

Go raibh maith agaibh (thank you everyone)

Friday, April 2, 2021

So it's Autism Acceptance day

 tw discussion of illness. And the oandemic





.so it's Autism acceptance day again 

 I'll spend the day wearing red and dressing up nights, if I'm luck and have the spoons do a light or moderate cleaning and hang some multicolored lights,  this year any other activities will be online on account of the pandemic, I totally missed opall of last year's autism month die to being too sick my self to even remember it never mind put in spoons,  Don't worry it wasn't covid probably, most likely it was a pretty hash flu, still nine site less  even had I been well things would have been similar to how they will be this year at home and online.  

Which will consist mostly of reminding people to center Autistic voices, read post by autistics, support Autistic creators and support autistic lead organizations  so I'm taking time to do that here too. 

If you want to donate to an organization this month 

 Autistic People of color fund

Foundation for divergent minds

Autistic woman and non binary network

Communication first

Autistic typing has put together a great list of black and indigenous/ POC, Latina. Latnx Autistics Advocates  i highly recomend you check out and follow!


here is a list of blogs by so actually Autistic authors read them and share

Thursday, December 26, 2019

Tonight i start a long project in one of my AAC apps

Tonight i start the long exhausting process of making a whole new user profile in proloquo2go to match the one on my cough drop app. I am going to do what i can to get my use vocabulary  as close as possible in proloquo2go to match how it is set up and laid out in my cough drop app.

For those who dont know i have 2 primatpry AAC apps i use on a regular basis coughdrop and prolaul2go, i regularly a, switching between them for various reasons through out the day. However their vocabularly set up and language (how you find where the words are ) is very diffrent. Since im constantly bouncing between these two apps i need them to umm have some uniformity cause its a lot to master both of them with how much my brain has been having issues lately, so im going to try to match the prolquo2go to my coughdrop app because it seema like the correct direction as it works a bit easier ish with my brain right now for language lay out,

There will still be diffrences like how i add endings and such but hopefully this helps thing be more effective in general!

Friday, November 1, 2019

There is more to speaking than Vocal Oral speech

there is so much value put on oral vocal speech, (mouth words) that people not only overlook but also devalue any other method of communication,  This has lead to hundreds of thousands of people being denied communication access, or forced to wait years before anyone tried to start to find a method of communication that worked for them, spending years fighting to have their voice heard, and having their other forms of communication often looked at as problematic behaviors, or over reactions.  it has also lead to people who could benefit from AAC but have any speech at all denied access because well they have speech so they  "shouldn't use AAC because they "dont need it,""  which of coarse is both wrong and often comes both from people around them but is often instilled as an internal message. yet when they do use AAC they find they communicate better, areas they struggle to communicate they can and an over all improvement in things

we act like vocal oral speech is the most important thing  you always hear about first mouth words, parents crying because they got called mommy or heard i love you for the first time, but i basically never see other forms of communication treated the same way ever!  you dont hear parents jumping for joy over first picture card, or first words on high tech apps, or first spelled words or sentence,  you rarely see the same admiration for this form of communication because people dont count AAC and non vocal speech as having the same importance or value and this needs to change!! all to often people hold off aac they deny it because to them vocal speech matters more, they cant see it as equal to other forms of communication, we need to change this! we need to make it clear all the other methods of communication have so so so much value and they are just as real and rich and beautiful and important as vocal oral speech,  We show that communication and communication access matters so much more than weather or not it comes from oral speech! We need the world to value all forms of communication equally and we cant do that until we start treating them equally. we need to push for building a communication accessible word with diffrent communication method options everywhere, we need to push for our tech to also be made accessible for all communication styles not just built around those who use mouth words!

 and there are so so so many different ways other than oral vocal speech to communicate many are even normalized, (like this blog your reading now this is normalized aac)  but there are so many more  just to name a few 

  • body language and "behavior" ie what people generally call expressing emotions
  • sign language
  • letter board
  • PECS (picture exchange communication) 
  • PODD book
  • Paper and pencil 
  • Symbol boards 
  • Objects used for communication 
  • Pictures 
  • Dedicated devices like a Dynavox  
  • Eye Gaze based AAC devices 
  • iPads, tablets and phones with full comprehensive AAC apps 

some of the normalized forms of speaking are,

  • letters
  • passing notes
  • texting
  • email
  • chatrooms
  • blog
  • IRC
  • twitter
  • instagram
  • snapchat
  • vine
  • tik tok
  • and other social media and online forms of communication

with all these different forms of communications we need to stop acting like vocal speech is the most important thing ever!we need to fight for and build a communication accessible world! we need to normalize switching between various forms of communication we need to stop fearing a life with out mouth words!

it is Autistic speaking day and I am tired.

Today is Autistic Speaking day, 11:23pm  at the start of writting this post, and I am tired, not, in fact because it is so late. though im sure that plays some part, I am always pretty tired on Nov 1st being the day after Samhain, which is a major event in which i spend weeks pour all my spoons, So i rarely have many spoons to put into posting a good post. or figure out what to talk about,  i could discuss the need for better cases, the greater need for over all aac access and tools in public places, the need for teaching emotions better with AAC i could go on and on about the need for more representation of AAC users with in the AAC community but i think i want to talk about 2 things maybe 3 and by talk about them i think for tonight i mean mention them with plans to flush them out more later if i remember two.

the first is something that i see all the time all year, and that is the need foir earlier introductipon to AAC and more public knowledge of what AAC even is, it happens at least 6 times or more a month  a parent mentions in a group im in their child is speech delayed, has unreliable speech or is entirely non speaking., and I ask if they have started AAC yet.  9 out of 10 times i get a no and on a rare occasion i get "we tried they were not interested,"  (which sounding like the parent had given up ion AAC all together i try to find a way to encourage them to not give up because its so so critical to never give up)  all to often even with kids ages as old as 9, 10 and 15 i have met parents who have never heard of AAC, or who have bee discouraged from AAC or told to wait or want to wait, we need to change this! we need to start making AAC a first priority, communication aacess and sensory supports should be a top priority.

the other topic i want to discuss is the critical need for more AAC user representation,  I remember when speechless came out i was inlive because JJ was a real AAC user, and he was a real person treated like a real person, not some plot device or a thing to motivate the speaking non disabled people in the show. there was so much that meant to me. but that was only one show, and yeah it was far from perfect but a huge step.  Here is the thing though AAC acceptance month just wrapped up and still the majority of the voices in that seem to be parents SLPs and AAC orgs, all important voices but we need to shift to making the primaryh voices of AAC thing AAC users themselves! all AAC programs should highlight users and make 98% of their surveys and work around AAC user feed back, with SLPs parents and teachers and app staff being second,

third we need a lot more resources for adults starting out with using AAC, all the resources are geared toward kids, and we need resources for helping kids but we need ones for adults just starting out with AAC for whatever reason they are using AAC.  Now when I say rresources geared towards adults i dont mean you need to make them boring, we like to have fun too! we like music and games and books ect! but even changing wording for modeling for kids, to activities you can do to work on aac and ways to get to know your device! fun games! ect

anyways sorry this is worded a mess im tired and this is chunky and such but i did want to get something out on Autistic speaking day

Thursday, September 12, 2019

Stop locking up our AAC systems in class rooms or in therapy rooms.

AAC  access needs to be 24/7. Al, to often I hear about, and i see posts about autistics and other aac users who only have access to their communication devices and AAC systems inside of the class room or only with in the therapy session then after that it is taken away, they are denied further access to their voice for the rest of the day, this isn't only probably the worst most ineffective way of teaching AAC i can think of, its flat out cruel and quite honestly should be counted as abusive, it would be a kin to gagging or otherwise forcefully silencing every non disabled reliably speaking child outside of class or specific one on one session, it just doesn't make any sense, and is flat out horrific to even imagine or think about, but when you take away an AAC users device that is exactly what you are doing.

Often times this is excused or written off as “we are waiting for them to show they can be proficient or know how to use the system, or “they push the same button too much they dont understand how to use it for communication yet, they only stim off it so they can have it outside of class or therapy once they show they can meet x level of proficiency and use of their system, but here the thing and i'm going to say this plain and clear…..

No one should have to meet x bar of proficiency before having home access to their AAC devices and systems! 

Access to AAC must be available at all times! 24/7 anytime or situation you can think of that you might wish to say something is a time or situation we need access to our aac, (this is in general i don't mean any time you might wish to talk to us, i mean you might want to say hi to some rando on the street, or you might want to ask for help, or you might want you yell from the bathroom or shower? Yeah those are times they too will experience in our own life and when we will need our AAC.  it is wrong to deny it to us just because we haven't met your bar of good enough to be allowed to communicate outside of sessions,) 

Insisting  we need to show they have learned how to use AAC effectively or to a certain level enough to have access is really just flat out wrong and counterproductive to us actually being proficient in being able to use our communication systems, that's not how anyone learns anything ever, more importantly that not how anyone learns language be it a foriegn language or  how babies learn language, in fact when it comes to both those its through interaxrions, exposure and some play,  

Let's look at babies first. Babies aren’t only spoken to in half an hour to one hour session, when learning language babies aren't taught it in a vacuum of  in a regimented session. Nor only allowed to try speech and have speech modeled for them in specialized environment, babies aren’t restricted to only being able to hear language and use it in a specific place until some professional signs a paper saying they are ready to use it outside their office, when babies babble and use one word over and over and over this isn't seen as a negative, and we don't assume they haven't grasped the concept of trying to talk yet, or that they aren't interested in learning to talk and just want to make sounds from their face, no babies bare allowed to babble  everywhere and play with language, we encourage it, when a baby says even one word we are excited we repeat it with them. We make sounds and babble with babies too! When teaching babies and kids language we play with language with them and model language and communication for them everywhere, as they get older we start playing word games if they have a few words we might make silly sentences with them! And we certainly leg them make as many of their own silly sentences! We don't begrudge a relatively speaking kid for yelling “cat meow bees ice cream truck book ,”. Or some other silly sentence, it should be no different for AAC using aac to do the same, And learning AAC should be no different,

when it comes to learning a foreign language we don't only allow the people learning the language to only have access to that language in the class, that would be asinine! We do, not entirely, the exact opposite,  class is used to refresh and go over new things but for real learning and getting practice and proficiency in knowing and using the language? we push them to use it outside the class! We want them to use it at home, with friends in their community,we tell them to go watch the tv channel in their language and listen to the radio stations using it. we encourage them to find people who speak that language and interact with them! In fact, it's really important and critically they meet and interact with native speakers of the language and practice using it with people who really know the language and who have been using it! AAC should be no different!  In fact exposure to other AAC users is one of the most important and overlooked aspects of teaching AAC and that needs to change! We need to see not only our peers using aac but also proficient adults using ir! And one day having more representation in things like tv would be nice too!

Stop making AAC so clinical, let us use our devices! give us access to our voices the moment you have them for us, let us take our systems home, let us play with them, let us babble and hit the same word or 6 words over and over and over again, let us make silly sentences,  provide our family and friends with at least low tech versions of our high tech systems and copies of our low tech systems and teach and show and have our family and friends how to model and have them model, help us find and meet other AAC users, let us have playtime and social time with other AAC users, language isn’t learned through trial training! its learned through exposure, modeling, playing with the language, its learned through repeating words and sounds and making silly sentences, its learned through interacting with others. when it comes to aac that means interacting both others who use the language  and also those who use speech, but no matter what, what matters here what is really important is that language real world interaction and we have access to our communication systems in the real world, in our community with our family and friends not just in some sanitized trial training environment which isn't how language is learned.

So please stop with holding our AAC systems, we not only d
Deserve 24/7 access we really need it!