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Tuesday, December 8, 2020

Not all languages look the same; our AAC needs to recognize that

I've been working on learning Finnish, and in order to do that, I've been trying to set up a Finnish AAC setup. If I am going to be actually learning a language, I need my AAC to support that language.

What I have found is that it doesn't support it. I can get a voice (and voice engines have a single voice choice, and there are so many languages that don't have any voices), but as I am trying to set up a symbol-based AAC, something I need, and use, it doesn't work.

I have spent an unreasonable amount of time searching, and yet, for all of my searching, all AAC starts from the assumption that languages work like English; that languages grammar work like English, or sure you might change word order between Subject Verb Object, Subject Object Verb, or so on but that can be just chosen with a different order of button presses. They come with assumptions that they can start with English, and order of button presses is all that might vary.

And yet it feels wrong, to not be able to label words as postpositions, with preposition as an option, but not postposition, for types of words. It is a challenge to make AAC work for me when I can add 8 inflections for a word and no more, like words never have more than 8 inflections, when working in a language with more than 8 inflections for the same word. Conguation works differently in different languages - we need to recognize this. Inflections for nouns, adjectives, and other parts of speech are work differently for different languages - we need to recognize this.

We need to, because currently everything is built around English. And not everytihng looks like English. And that means not all languages are supported. Because not all languages are English. And not all languages have the same structure as English.

And all languages need AAC.

There is so much talk of how many button presses to get to words, but when additional folders need to be created, then the number of button presses has to go up - sometimes dramatically. Every test sentence I tried was at least double the number of button presses of what it'd take to say in English to say an equivalent in my current attempt of building a board set in Finnish because of trying to force it to work despite lack of support. This large number of button presses is in large part because of differences in inflections - I don't have the number of noun cases supported and need additional folders for every noun and adjective. I don't have the idea of a language that looks like this supported at all.

But, there are many areas in which languages vary beyond this one example of noun cases - as well as many in which English is unusual. Tenses, questions, there's a lot of things that are just, we need to be able to support how it works in other languages as well.

I cannot find any symbol based AAC that looks comfortable to use with an agglunative language. And agglunative lanaguges exist.

People speak different languages. People have different native languages. People learn different languages. English is not the only language that exists. And limiting people to English because of their disability is a problem. Limiting people to only certain limited languages, because of their disabilities, is a problem. People speak different languages, not all languages look the same, our AAC needs to recognize that. And our AAC needs to support that.

Saturday, October 10, 2020

Being wrong

When I was a kid, I didn't know I was different than others.

Oh, I knew they hated me. I knew everything about me was wrong. But I didn't know I was different than them. I just thought I was hated. I just thought it was me.

When I was a kid, I didn't know I was different than others.

I knew people didn't take me seriously. I knew people didn't believe me. I knew people didn't treat me like what I was saying was true, when I was just saying basic things about myself. But I thought that was just how it was.

When I was a kid, I didn't know I was disabled.

I grew up around disability. I grew up being told about disability. I grew up writing stories about disability every time I was expected to write any sort of creative writing in school. And I didn't know I was disabled. Nobody told me.

I would be being pulled from class for speech therapy. More and more time trying to fix my speech into what others wanted. Me not understanding why I was there. But I didn't know I was disabled. Nobody told me.

I can't say I wasn't treated like I was disabled though, because I was. Adults talked to each other, around me, about not knowing my labels but knowing there was something wrong with me. I found out about this as an adult. I was forced into multiple forms of therapy. People treated me like I was wrong for being me.

But I didn't know why. And I didn't have words for any of this. And all I had was that people hated me.

I didn't know I was disabled. I didn't even know I was different. All I knew was that I was hated.

If I tell people I didn't know I was different there's assumptions that it didn't hurt me for me to not know.

The people around me knew. The treated me like they knew. I didn't know why they were doing so. Me not knowing didn't protect me from others knowing.

Often when people talk about when do you tell your child about their diagnosis people end up talking about your child already knows they just don't have the words for it. But, there's also, other people know. Not knowing isn't protection from others knowing. Not knowing doesn't keep your child out of abusive therapy. Not knowing doesn't mean your child is treated like everyone else. Not knowing doesn't keep your child safe.

I didn't know I was disabled. I wish others didn't know.

Because other's knew. And that meant I was still treated like I was disabled, even though I didn't have these words for my existance. Even though I wasn't able to find other pepole like me. Even though I didn't know there was any community. Even though I didn't know what there was that could help me.

I still was wrong in the eyes of others, and they still knew that, even if I didn't know why they thought I was wrong.

Wednesday, June 24, 2020

Why don't you ask them?

I interact with a lot of parents of disabled children, in a variety of settings. I think the most common question I am asked is approximately "so you have this same disability as my kid, what does my kid need?"

Why don't you ask them?

I don't know what your kid needs. I am glad! So glad you are asking me, looking for adults like me, who have similar disabilities to your child, to learn from. I think that can help so much with learning. But I don't know. I don't know the things that your child loves, the passions your child has, the thoughts your child thinks. I can't know them. I'm not your child.

I can give advice. I can tell you We Are Like Your Child. I can tell you patterns exist, and that you should pay attention to patterns. I can talk to you. I can tell you things to read. I can help you find ways to learn how to listen to your child, and help you find ways to communicate with your child.

But I am not your child, and I cannot know what your child is thinking.

And similarly, you are not your child, and you cannot know what your child is thinking. You cannot know what your child can understand. Have you asked? These questions you are bringing to me, have you brought them to your child, and heard their thoughts, instead of just hearing mine, as useful as hearing the thoughts of a disabled adult is? Because the decisions of your child are what matter here. Your child has autonomy. Your child needs autonomy.

Sometimes, that's the things I need to say, is your child is a child and that means your child will grow up. Sometimes that's the things I need to say, is that you are being told disability is scary, and not, look, your child is a person we need the ability to make decisions over what we want to do, how we want to do it. We need to be able to rebel. We need to be able to enjoy things.

Sometimes that's the things I need to say, is simply. Have you asked? Because of being told, over and over, that you need to turn to professionals, and eventually that meaning you are learning you can ask me instead. But not realizing you can simply ask your child, when it's your child's life that you are controlling.

So have you?

Have you asked? Why don't you?

"But they don't understand"

You. Don't. Know.

You don't know what your child is thinking. You don't know what your child knows. You don't know what your child can do and what your child wants to do and what your child has never been given a way to do, because of people never saying it is available, and what people have been making therapy therapy therapy therapy and never letting there be a way to live instead of try to have us get fixed. You don't know.

Do you know they understand? No. Do you know they don't? No. You have absolutely no reason to know they don't. So find a way that communicates with them. Pay attention. Provide options. Try things.

Do they need more time to process? Do they need pictures? Do they need things provided in multiple ways at once? Do they need reduction of sensory input? Do they need things the same, or different, or anything, when being asked questions? How works? I know what works for me, I don't know what works for others. But assuming it works for you, doesn't mean it works for your child, and because what works for you doesn't work for your child, doesn't mean your child doesn't understand. It means that particular option doesn't work.

Or you might tell me they can't answer you. But answering doesn't need to be in words.

Have you provided any sort of AAC system that isn't their body language anyways though? Have you looked into what works, and given time to learn, and treated it as communication and not as behavior to be learned?

Have you recognized body language as communication?

You're telling me echolalia and stims aren't communication. Bah. Are you paying attention? Sure, communication is multi-level and not always direct and when you're expecting the words to mean what they say, you aren't getting that. But are you paying attention to when they're said, why they're said, how they're said? Are you paying attention?

Are you listening to the communication that is your child's instead of expecting your child to match your communication to make it easier for you?

You ask me, what you need to do for your child, but are you asking your child, are you asking your child in your child's language, are you listening to your child's language in response, are you realizing not everyone needs to say your language always, in the first place?

I can help.

You should be asking questions. Your child should meet us. Your should read things written. Things by disabled adults are so so helpful, and you, yes you, need autistic friends. But your child needs asked too.

Ask. Listen.

To us. And to your child.

Thursday, March 19, 2020

a case against modeling

But modeling is the Best Practice for teaching AAC you say. It's how you do it. It's the best way we know to help people learn to communicate.

I say no. Modeling isn't the best way to teach AAC. The best way to teach AAC is simply communicating.

There's a whole bunch out there about modeling, what is modeling, how you should model, what are the best ways to model, how to be more efficient with modeling, but what it comes down to is that it always is being unnatural. You aren't naturally communicating. You aren't using words like you usually do. You aren't putting together sounds, putting together words, playing with language, using language, using sentences, the way you usually do. It's not talking about things you talk about, the world around you, what people like, reading books together. It's not how we talk.

How people model, how people talk about modeling, is like you can only show one button at a time. We don't learn only one word at a time, we learn relationships between words, we learn words and how they interact with each other. We learn words that pile upon another, playing with each other. We learn how some words fit with each other, and others don't, at the same time as learning words. We learn language. Because, we hear these things. We have them offered to us. They are used around us. They are used.

How people model is like you have to go out of your way to find ways to use these words. The important words. The core words. The words you need to make sure people know. Like it matters what people learn first. The words we learn can be the words we learn. We can communicate in multiple ways. Pay attention to the communication. But, going out of the way, isn't natural, it doesn't make those words make sense, they don't fit.

How people model is like, you need to think, and plan, and use numbers, and it these numbers and counting, and looking at the data just about makes it into trials. It makes communication into behavior.

My communication isn't behavior. My AAC use isn't behavior. My life isnt a series of behaviors.

You want to teach AAC?

What about just talking?

What about simply, using AAC?

What about simply, communication being, having AAC, and using AAC, and that being your default method of communication. Type, buttons, learn them, know them. You want to ask for food, use it. You want to talk about the baby bird, use them. You want to read a book, use it. You want to play with sounds together, joyfully playing with the fact that noises are noises and you can make specific noises with specific letters? Use it. Just, use AAC, however it gets used. Whether that's talking about dogs and cats, or about advanced mathematics, or both.

This exposes AAC. This shows language. This shows buttons. This is natural, you using it when and how you would be. This interaction. This is interactive. This isn't sitting there using AAC like it is some thing you would never want to use, but I guess you need to push these buttons to show that they exist (because seriously "I need to say all the words and press one" WOW that is saying speech is better, and like there is something wrong with me for using AAC for all of them, not like I'd want to interact with someone doing that to me. I would choose not to interact with someone doing that to me.) This is communication.

Modeling isn't communication.

Using AAC. Communicating with AAC, is letting someone communicate back, however they choose, is listening, is responding, is paying attention and learning someone else's language, as well as learning and communicating with an AAC app, but the important central part of this is that it's communicating. It's an interaction between multiple people. It's an interaction.

You want to teach AAC?

Use it

Tuesday, February 18, 2020

you wouldn't claim I don't know the words

You don't say I don't know words, that I don't know meaning, when I drop them. When my natural speech patterns (typing patterns really, we shouldn't call all word patterns, all word choice, speech patterns). When my natural word choice doesn't include pronouns in many situations, because they are just unnecessary. You know what I mean.

You don't say I don't know words, when I talk to people, about pro-drop and aux-drop. I know the terms. That makes it acceptable.

(That makes it acceptable because I was taught the words. Because I'm an adult. Who was treated like I could learn.)

You don't say I only know nouns, because my choice of how to say "I am hungry" is "food?"

but I mean, why would you say anything else? It says all you need to.

And meaningfully. You don't say you. Yourself. Don't know these words, when you do it yourself. I pretty much guarantee, you yourself, are dropping words from so called "proper english" what you claim is proper, and what you are trying to force upon people, because "they don't don't know the words" or "how do I know they know the words" or any other thing claiming people don't know something because they choose not to use it, just because they are disabled. Because what you use isn't what we are supposed to use.

it's okay for me. Because I know how to talk about what I'm doing. Because I was given the chance to learn which is being denied from others.

You don't claim I don't know the words.

Except, if you met me, and I was using my symbol based AAC, would you claim it then?

(I mean no, because when I'm using it I feel forced to use them all. I feel forced to not use natural language. I don't feel like it is truly a representation of how thoughts flow. It is helpful to me, but with how I have been treated with picture cards and with how picture cards and symbol based AAC is treated in general, I don't know how to make it natural language. I simply don't know.)

Would you claim it though? If I were to use my symbols like I do my typing? Or even, if you saw my typing AAC, would then, it be me not knowing words. Would I be instead of someone on the other side of a keyboard, someone who doesn't know things, because I would be now supposed to speak however you want, to prove myself, rather than to communicate.

Because language is meant to communicate. But treating it like this, it's not communication.

"How do I know if they know core words"

Do you know what they are saying? Are they successfully communicating? Is that the goal?

Or is proving their knowledge of core words the goal?

Is the goal getting across an idea?

Or the goal pretending to be normal

Except.
Normal.
Isn't.
Even.
Like.
That.

You are trying to make us into robots. Claiming it is the only way speech works. And it has taken effort to learn that I don't have to do that. But still, you wouldn't claim that I don't know these words, when I'm choosing now not to use them. And others, who have never been given the opportunities I have, you are claiming do not understand.

There is no one way to speak.