#apraxia

You may think it's funny, you may think it adds another layer to your joke, but it doesn't.

this is nicki! she is a vague redesign of a ten year old character i had who was a lizard demon girl. she's a seamstress who likes alt fashion

Got shoulder strap with shoulder pad, three sets of attachment points (for ipad, accent, and podd book, so will be able to switch between them easily) , and a charm of the yes no button from Bluey. 🥺

ID: a folded up bluey fabric shoulder strap with an acrylic circle sewn onto it that says "I can use my big girl bark" on it, three sets of fabric loops with metal clips on them two black one red, a bluey fabric bracelet that says "I have something to say please wait while I type my message", and a acrylic version of the yes/no button from Bluey. End ID.

From Lance McLemore (@loudlampman on IG), an autistic AAC user with severe apraxia. Excerpt: "Speech impairment exists on a spectrum like blindness or deafness. There are many reasons why a person could have significantly impaired speech: autism, cerebral palsy, stroke, traumatic brain injury, ALS, Rett syndrome, etc. I’ll use myself as an example. My speech is impaired due to severe apraxia. I understand everything that is said to me. I know what I want to say, but it’s very difficult to make the muscles involved with speech do as I wish. As a result, sounds come out distorted, some sounds are substituted for others, some sounds or words are dropped entirely, and suffice it to say, it’s a big mess to most listeners. I like to compare my speech to the electrical system in a house. Imagine that an electrician wired your house with wire that was a smaller gauge than necessary. If too great a power demand was placed on that circuit, it would overheat and cause the breaker to turn off. This connection between my brain and mouth is fragile. I might be able to say a two to three-word sentence, but anything longer gets less and less intelligible. And I have to exert ever more energy to keep talking. After some time passes, my speech completely breaks down, most of my energy is gone, I can’t really concentrate on anything, and then I have to be left alone to recover.  I’m sure this sounds peculiar to the average person, and they have trouble relating. For the average person their speech is stable over time, and they cannot understand how speech quality could fluctuate so much.

I’ve tried to explain this to people, but it seems like it usually causes confusion and misunderstanding. I say to them, “I use a communication device because my speech is difficult to understand.” A response I have gotten is something like, “you can go ahead and talk. I’ll be able to understand.” It’s as though they see it as a challenge. I might try to explain the fatigue it causes me, but then I am seen as being too lazy to make the effort to talk. Believe me when I say that a lazy person would not use an AAC device. My remaining speech is not adequate to meet all my communication needs, and I know many other AAC users are in the same position. Please don’t give me and other people like me grief for using a communication device. There is a reason we choose to use AAC. It wouldn’t make sense to use it if we could just say it with our mouths. Communication is difficult enough already, so don’t make it more difficult with your erroneous assumptions.  You cannot assume that just because we might talk some of the time that we should be able to talk all the time. Remember that one application of AAC is to augment remaining speech. We shouldn’t have to stress ourselves out and push ourselves to the point of mental and physical exhaustion just so we can use a method of communication that is unclear and unreliable. I’m well aware that an AAC device makes people uncomfortable, and it’s often slow and awkward for the listener. However, we have to use the communication method that works best for us.

In conclusion, I have a few words for other AAC users who might be reading this. You have the right to decide how you communicate. Whether you choose to speak, type, gesture, or a combination of methods, you must do what is best for you. Don’t be ashamed of your communication tools, and don’t let anyone bully you into using something that diminishes your ability to communicate. If you find that speech is useful at times, then use it. And then at other times if AAC is better, then use that. I know it’s easier said than done, and I have to admit I still struggle with it. However, acquiescing to the bullies is worse."

Tell me, what is fair about that?

Some people even think we shouldn’t be able to use word prediction on the keyboard because it may influence what we want to say. But everyone else is able to use it to make typing easier. Being held to a higher standard is like being under a microscope at all times, and I can tell you it stinks. I hate feeling like I constantly have to prove myself. YOU are able to get up and give a presentation in front of an audience without others whispering “so you think he really wrote that?” or “but how can someone who looks like that be able to feel and think that way?”

- Gregory Tino