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

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

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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 dúchas.ie, 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.

Dúchas.ie

Irish Pagan school: https://irishpaganschool.com/courses/

Lora O'Brien log  https://loraobrien.ie

Lora O'Brien youtubehttps://youtube.com/c/LoraOBrienIRL

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