#aac users

I spent most of the day with my best friend yesterday (after not seeing them for over a year) and certain things have changed since seeing them, like me having an AAC device. I still haven't felt comfortable enough to use my AAC with them (it is harder to use my AAC with people who know me because they know I technically can speak). And so, I forced myself to speak, even when it was becoming exhausting, because for a good amount of time, it wasn't as draining as usual, and it was bearable.

But, I realize that it wasn't the exhaustion from speaking that made me realize just how much I need to use my AAC and need communication support overall...it was that even though I was pacing myself to speak, wasn't rushing, and actually stayed within my body for most of it (not much dissociation/disconnect from what I was feeling and thinking), I still struggled to get my thoughts across in the way I wanted to.

It wasn't the exhaustion that got to me. It was how much I kept struggling to pronounce words (getting stuck on them), how much I kept mumbling and speaking too low because I struggle a lot with knowing how loud I am speaking. It was how much I struggled to translate my exact thoughts into verbal speech without anything becoming lost.

It was how I could not verbalize or communicate things I felt and could only understand visually. It was how much I kept saying things in a way that I did not mean to say; saying things in ways that lessen the clarity and makes it seem like I don't know what I am talking about or trying to say when I do in my mind. It was how much of my extensive thoughts kept becoming shortened through speaking.

It's not the exhaustion that makes me validated in seeking and using AAC. It's how I literally cannot rely on verbal speech/mouth words. And I have been feeling how frustrated I truly felt within while it was all happening (I processed the feeling late, after they left back home). It just reaffirms how much I need my AAC, like....so much.

Thought I would show my communication cards (the only video I have of them). The card that says "I am close to a breakdown" was a mistake and I was sent the right one for free and it's "I am close to a meltdown" now

There are some cards I would change and add now too:

💜My pronouns are She/They -> She/Mae

💜I am semi-verbal. I struggle to speak sometimes -> I am semiverbal, speaking is exhausting and difficult for me

💜I am semi-verbal. I cannot speak right now -> I am semiverbal, it is easier for me not to speak

💜And then I'd add -> I am semiverbal and I use AAC to help me communicate (or I am autistic and I use AAC to help me communicate)

And more~

Anyway, wanted to share this as I still love my communication cards even though I don't use them and I thought it might help or give inspiration 💜✨

Video length: 6:04

Message from AAC: "These days I have been changing and trying to figure out the colour theme of my AAC home page, and it has been so difficult and confusing, but I have finally settled on this home page and I love it so very much! My AAC is finally starting to feel like mine, and the voice too, which I changed as well."

I first tried to create a whole new pageset from a blank one that TD Snap offers, but it was too overwhelming throughout the process and overall that I simply gave up and decided to figure out how to make my current pageset feel more like me

The pageset I gave up on:

Video length: 6:27

Message from AAC: "I am not in college but was able to have a SLP for free from the college, and it is already set up that I am going to work with the same SLP for autumn semester, but I have to get a new SLP for myself until then, and I am so tired of how much help I need to get for myself, on my own. I am hoping that I can get and have someone to help me with all of this."

Additional thoughts:

I believe the tiredness I have been feeling is labeled and known as "access fatigue" for disabled people; with how much we have to advocate for ourselves and try to gain all of the support and accommodations we need (I did not know about this being an actual thing until yesterday).

There is just overall too much to learn and figure out about the kind of support I need and how to get it that I really just need a social worker (I believe). It is so immensely easy for me to become overwhelmed and confused, and I often don't remember things long enough for it to truly stick.

I can write things down, which I have done for other things, but I always have to rewrite things out several times, like I am remembering it all over again and it's mentally exhausting to do all of that only to still be left questioning if things are truly correct *sigh*

Link: My feelings and thoughts about AAC lately — Part 1/2

Video length: 8:28

Message from AAC: "I still feel like I don't need AAC because I can speak. And I believe it is because I don't currently have help from a SLP, due to school semester ending earlier this month. And I feel very lonely with my use of AAC as no 1 else around me is using it. I still feel too different and that I am unnecessarily making things harder for myself. I just need the support from an SLP with using and implementing AAC in to my life fully."

Additional thoughts:

I still use AAC daily but not as much as I actually need and want to, as I still utilize speech (even when it hurts physically and drains my energy), because of how lonely and different it makes me feel.

Being an AAC user is a very visible and obvious thing and that causes me to always be aware of my difference with all of the people around me. I still feel anxiety about being openly and verbally judged too (though this hasn't happened). Though when I truly sit and reflect on this, I realize how much it doesn't truly matter what others think or say, but I'm still a very anxious person internally.

I also just don't have anyone around me where I can truly have in-depth conversations about things that actually interest me. A lot of my AAC use is based in small talk, requests, questions, and general topics; none of which I truly want to converse about most times.

And I just really need more help to implement AAC in conversations and to self advocate while speaking with AAC when people talk too often, not allowing me to take my time to type and respond. And I need more time to process and respond anyhow when I speak with my mouth. I definitely need a SLP for now.

Link: My feelings and thoughts about AAC lately — Part 2/2

My masking has lessened with using AAC, but it's still there. And overall, I have not yet adapted a new way of communication that truly incorporates how I authentically communicate with AAC. I don't even know what my authentic communication style/verbal expression is with AAC yet. It is like I am having to learn how to speak and communicate again