AAC means all of the different ways a person can communicate other than talking. The letters stand for Augmentative and Alternative Communication. It is an alternative communication method that supplements or replaces a person’s spoken or written language. And when my mom uses it, I can still help her!
I have shared with you in the past that my mom is fully dependent on a power wheelchair for her mobility. But not so much about other medical devices that she uses.
My mom can’t breathe on her own. So she uses a machine, known as a ventilator, that does the breathing for her. She is fully dependent on a vent to breathe. Which means she uses it all of the time. Day and night.
The vent my mom uses!
You might be wondering how the air gets into her lungs. She has a tracheostomy tube inserted in her neck. Which goes into her trachea, also known as the airway.
There is a long circuit or tube that attaches to the vent. And connects to the trach tube. This allows the air to go from the vent into her lungs. Maybe you have noticed this tube in some of the photos or videos that I’ve shared.
My mom uses a Passy-Muir speaking valve so she can talk. This is a little plastic valve that is specially designed to be used in line with a vent.
The Passy-Muir speaking valve!
She wears this during the day, but at night she has to take it off. Since it isn’t meant to be used while a person sleeps.
When she removes the speaking valve, she inflates a cuff that is on the inner part of the trach tube. This blocks the ability of the air to pass by her vocal cords. Which makes it so she can’t talk.
My mom says the ventilation is much better when the cuff is inflated. But it is worth deflating the cuff to use the speaking valve. Since she likes talking!
So what happens if she needs my help when the cuff is inflated and she can’t talk? Sometimes she can deflate the cuff and talk a little bit. But her voice is softer, so I need to listen closely.
We do a lot of practicing with my mom whispering. Or using various levels of softness to her voice. Since I need to know how to respond if my mom needs me and her voice sounds different.
But what if she can’t deflate the cuff? And has no sound to her voice? For one thing, she has taught me to do most of my cues by hand signals.
And another way is using an AAC system that I mentioned earlier. Years ago, my mom found an AAC app that was easy to use. And affordable for the somewhat minimal amount she would be using it.
The app she is using is called Talk Tablet. It is customizable to her needs. She has a section where it has some of my cues. This way, she can use it to let me know what she wants me to do.
Some of my cues are in the app!
My mom and I practice often. This way, I stay comfortable and proficient with responding to the cues coming from her iPhone or iPad. At first, this was confusing. But it got easier to do, the more we practiced.
My mom used to be concerned if she needed help during the night. What if she couldn’t get the syringe to deflate the cuff so she could talk? Or what if she needed help but was in distress and couldn’t move enough to work the syringe?
Remember a while back, in my post… A service dog gets help! …I told you about some of the ways that I can summon help if my mom needs it? One of those ways was that button I push when my mom says “help.” But if she can’t talk she can’t ask me. Right?
Well, I learned another way to respond to the “help” cue. My mom has it in that AAC app. She recorded her voice with the cue. So if she wakes in the night and needs help, she taps open the app on her phone. And presses the cue that will let me know to go push that help button!
My mom taps this is she needs me to push the “help: button!
We have practiced this often so I’m very proficient with responding. Because I need to be quick if my mom needs help!
This has added another layer of comfort for my mom and dad. Since it can be concerning if help is needed and my mom couldn’t get someone there in time.
When my mom has to stay in the hospital they usually have to keep the cuff inflated so she isn’t able to talk. This is so they can better regulate the amount of air she gets.
Since she can’t talk, she either writes notes to the nurses or doctors. Or uses the AAC app. Which is easier and less tedious than writing.
In the app, my mom has sections for her. Ones that let others know if she needs something to eat or drink. Or if she is uncomfortable and needs to be turned. And a section about her trach care needs.
Some of the things that others might have to do for me!
She even has a whole section just about me! This way, she can let others know what I need. Things like going for a walk or getting my dinner. Sometimes I need to get off my mom’s bed and get on mine.
But my favorite place to be is with my mom. Right on her bed so I can know when she needs my help. Or wants to snuggle!
