r/mute

Hello. I wanted to introduce myself.

I'm a trans man who has struggled with speech my whole life. I have seizures that cause transient aphasia and likely had childhood apraxia of speech as well. So when I can't speak if I were to try to I would sound like I am speaking gibberish. However, some times words come out completely clear. So I can say "yes" one time and then the next time it sounds like "eest" or some other weird jumbled nonsense of sounds. That's why my SLP(speech language pathologist) suspects that I had childhood apraxia of speech but it went undetected due to the aphasia diagnosis. When my brain is able to recover from seizures my ability to speak goes back to fully verbal. However, even when I am fully verbal I struggle a lot with my speech. I make frequent pauses to allow time for my facial muscles to form sounds to form words. Some times it's aphasia related and I need more time to think of the word that matches the definition I see in my mind.

For a long time I thought my challenges with speech were just related to my seizures. But my belief started to change when I went into greater depth about my plans if I were to get my seizures under control again. A long story - here's the short version.

As I mentioned I have had seizures. I was diagnosed with epilepsy in my very early childhood and aphasia came around the same time. I did experience a five month period of an inability to speak but once meds for the seizures started my speech recovered. Fast forward to 2015 and due to a "normal" EEG I was undiagnosed with epilepsy and diagnosed with PNES(seizures that aren't caused by an electrical misfiring in the brain) So this meant meds were stopped. Anyway, over time my seizure frequency went up and thus periods of no speech also got longer. Eventually I got to the point where I was without speech for months at a time and this led to me seeking speech therapy.

So getting back to what I was saying. My SLP and I discussed if I would continue using AAC devices if I'm able to get my seizures under control and my ability to be verbal is restored. The months of therapy made me realize something. I didn't like how it felt when I verbalized. The energy, the effort, the sensory sensations, etc. Being verbal is just very uncomfortable in multiple ways. I wanted to figure out why so I went home and thought. I eventually came to the conclusion that I was masking and that is why it was so uncomfortable and draining for me. So I did an experiment to see what would happen if I were to unmask. That's when I discovered something very interesting. Once the mask goes down completely my speech becomes identical to how it is after a seizure. I become primarily non-verbal/non-speaking.

I guess it's a form of high masking. My brain dissociates from the the area that struggles with speech when the mask is up. When the mask comes down that area goes online again. Or at least this is my theory of what is happening. I feel like my baseline is somewhere between semi-verbal and minimal verbal and maybe non-verbal/non-speaking on my worst days. I think being fully verbal is nothing more than a forced state brought on by a "need" to "fit in".

After having a few meltdowns close together and suddenly realizing that I need fidget toys, headphones, stimming in public, etc. I realized that I am losing my ability to mask to the same extent that I was used to. So why should I continue to force myself to be in a state where I am uncomfortable just to make others comfortable? I am still figuring out the answer to that question. Being able to verbal makes communication easier and more accessible. You think of something you can just say it. You can call for help in an emergency. You can be heard more easily in noisy environments. But all this comes at a cost. A price I am realizing I am slowly losing my ability to pay.

Anyway, I am open to questions.

I am currently working on a project which is essentially a communication device for the speech impaired/mute users. I need some info to work on since there are a lot of unknowns.

A. Background & Context
Can you tell me a bit about your communication situation — what makes verbal speech difficult or not possible for you?
How long have you been communicating this way?
What does a typical day of communicating with others look like for you?
B. Current Communication Methods
Walk me through how you currently communicate with people who don't know sign language or your usual method.
What tools, apps, or devices (if any) do you currently use to communicate?
How did you learn to use your current method, and how long did it take to feel comfortable with it?
Can you describe a recent situation where communication was especially hard? What happened?
Can you describe a situation where communication went really well? What made it work?
C. Pain Points & Frustrations
What's the most frustrating part of your current communication method?
Are there specific settings (school, work, hospital, shopping, public transport) where communicating is harder than others? Why?
How do strangers or people meeting you for the first time usually react, and how does that affect you?
Is there anything about your current method that makes you feel embarrassed, tired, or excluded?
How much time does it typically take you to get a full message across, compared to how long you feel it should take?
D. Needs, Preferences & Expectations
If you could change one thing about how you communicate today, what would it be?
What would an ideal communication device do for you that nothing currently does?
How important is it to you that a device speaks out loud vs. shows text vs. something else? Why?
What would make you comfortable wearing or carrying a device in public?
Are there specific words, phrases, or topics you find yourself needing to communicate most often?
How do you feel about a device that uses a camera or sensors to read your hand/finger movements?
What concerns, if any, would you have about privacy, appearance, or reliability of such a device?
E. Technology Comfort & Feedback
How comfortable are you with using phones, apps, or wearable gadgets in general?
Have you tried any assistive communication technology before? What worked and what didn't?
Would you be willing to test an early prototype and give feedback? What would make that a good experience for you?

Any leads would be really helpful!!

hello gang. so i’m mute via acquired apraxia of speech and its severe enough that i cant speak coherently at all. my brain has no fucking idea what my mouth wants to do basically, lol. my motor planning and ability to produce accurate sound is washed.

my doctor put me down as having “selective mutism” recently, which is…not correct, obviously lmao. i dont even know how to go about correcting her. i have paperwork somewhere about it? man idk.

selective mutism is a very real disorder but I DONT HAVE IT 😭 mostly just wanted to complain lol