Mission: Independence!

I’ve written about Diva’s AAC system before, along with where we were when we started. My sweet girl has worked so hard to express herself, and come so far. She tells us when she’s frustrated, mad, tired, and happy. She asks for her favorite shows, for milkshakes (“dessert juice”), and Christmas songs. She bosses all of us around, just like any almost-tween. It is sort of hard to believe that she only started accessing a speech-generating device less than a year ago.

Since then, we’ve learned about, explored, and assessed some other systems — high-tech PODD 15+, Unity 45 One-Hit on an Accent 800, LAMP on an Accent 800, and even Compass. We’ve almost succumbed to the lure of the internet and the “this app is the best thing EVER!”, as well as the guilt of whether we are doing enough. The thing is that Diva has multiple disabilities. She doesn’t have autism, or a genetic syndrome, or apraxia. She has both visual impairments and physical disabilities. In fact, she used to be considered legally blind, though her vision has improved substantially over the past six months. When we talk about not being able to access small buttons, she both cannot see the buttons and cannot manipulate her hands to isolate each button. With an impending school move, we spent the past week making some “final” (ha!) changes to her current system — always trying to find that balance between independence and ALL-THE-WORDS! I thought I’d describe some of her system so that you can see how we worked through this, in hopes that it helps other kids who are struggling with being able to be autonomous communicators.

Home page of Diva's talker.

What she’s using: Proloquo2Go on an iPad Mini, attached to her via the Gab N Go Harness. We chose the smaller screen of a mini for its portability. We wanted to be sure Diva could carry her own talker everywhere she goes. P2G is probably the most customizable system that I’ve had my hands on, which is why it keeps working for her. I think the danger of P2G is that people end up with a series of words or pages, instead of a language system. We’ve worked really, really hard to make sure that Diva has a language system.

Access: Diva uses direct access via hand. We tried step-scanning and automatic scanning, but she has literally thrown the devices at us each time we have done this. She has no desire for any of that. She wants to do it herself. She is able to isolate her pointer for short amounts of time or with light adult support, but adult support is interpreted by presume-incompetence people as proof these aren’t her words. They are her words. They are 100% her words. So a huge reason we made changes was to increase her ability to independently access the words, no adult support, and speak her mind.

Visual design: Diva has been using high contrast icons since January very successfully. The high contrast PCS decrease visual clutter and extra details, as well as use color to help differentiate pictures that would often look very similar (e.g., all the faces with emotions). With CVI, the more she sees pictures, the more she can visually understand them. We recently noticed that she had switched from relying on auditory feedback (push button, hear it speak, decide if that’s what she wants) to visual scanning the images. We switched the button backgrounds to black. We deleted one row, moving her from a 5×5 array to a 6×4 array. On P2G, this means that her buttons became squares and the images became bigger. We also increased the space between buttons to decrease mishits (hitting the button to the side or above accidentally). At first, we had everything in yellow borders. After talking with a dear friend, we realized that adding the color borders would help communication partners to identify words more quickly when modeling. I already think it’s helping Diva as well.

Language organization: Diva’s language system has been designed from scratch, with a focus on core words. The customizable features of P2G means that we have been able to keep features from different apps that work for her. The first page consists of all folders, each of which open to a second page of 24 vocabulary buttons. We don’t repeat any words, one path per word. Our original hope was for her words to be within 2 hits, such as with apps like Speak for Yourself. Except we presumed competence, she kept growing, and we realized that we need something that will be able to grow and grow and grow. So we incorporated a couple of other features we love — the categories page and list features from PODD. Both of these features allow us to collect and add fringe words in easily accessible ways, without substantially increasing the amount of hits. The absolute most number of hits to access any word in her system is 4, with most words being between 2 and 3. I am not someone who thinks “number of hits” is the be-all, end-all feature of AAC. I do think that the more we can keep visual scanning needs down, the more independent Diva will be. It’s taken a lot of time and feedback to come to these decisions, but we’e tried to think through everything — where words will go, what color, where “clear message” and “turn the page” are located (same place on every single page). We have a “cheat sheet” that shows where and how words are placed. Nothing is added without thinking through the whole system. Nothing is added because it will make things easier right now without thinking about what Diva needs long-term.

The second page (under "look") of her talker. Notice "TV shows" in the far right column, which leads to a  list. This will be a pop-up when P2G 4.0 comes out.

The second page (under “look”) of her talker. Notice “TV shows” in the far right column, which leads to a list. This will be a pop-up when P2G 4.0 comes out.

This is Diva's categories page with her current unmasked categories. The left column shows one of my favorite things in PODD -- a way for kids to quickly help us know what they are telling or asking even if they are not yet using tenses.

This is Diva’s categories page with her current unmasked categories. The left column shows one of my favorite things in PODD — a way for kids to quickly help us know what they are telling or asking even if they are not yet using tenses.

Vocabulary selection: We used the UNC Center for Literacy & Disability Studies’ forty word core word list to decide the core words that needed to be most easily accessed. We then used a bunch of high frequency core word lists to select vocabulary. Her personal core consists of family names, television shows, most frequently used toys, and therapists/teachers in her life. We collect lists of fringe words and add them in the evenings. The vast majority of her current vocabulary is unmasked, which means they are visible to her. She’s learned so many new words through modeling and babbling — hiding the words seems to be a bad decision. If we weren’t sure about this, I hid some words and walked in to her pressing blank spaces repeatedly, looking for where her words had gone. The exception to this is that we do not have all categories unmasked yet, since these are new.

Making these changes meant that her absolute max vocabulary grew from 400-800 maximum slots to 1200 – 1500 maximum slots. I realize that 1500 is still so much less than something like Speak for Yourself or P2G with a much larger array or more categories. But she can access these words! All by herself! She can tell me from across the room that  she’s thirsty and wants juice. She can tell me to watch her! It’s not helpful to have 3,000 words if you cannot get to them — she can get to her words. It’s not helpful to have an awesome pragmatic system like PODD if half the people in your life aren’t using it. Maybe by the time that we get to hitting 2000 words, Diva will have the visual & motor skills to access larger arrays. Maybe completely different technology will exist. I don’t know. I do know that I cannot let mama-guilt and mama-fear take me over. I’ve got too much real work to do.

This is the first in a series on AAC that I hope to do this week, covering her design, the way we use it, the way we support others to use it, and so on. If you have questions, leave them in the comments!

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2 thoughts on “Mission: Independence!

  1. I absolutely love your rationale and organization for using core words and high contrast symbols in P2G. I am curious how it is going using the new updates with templates and popups. Would you consider sharing a back-up of your user file? I support a couple of students who have CVI and need high contrast symbols on P2G. We have been using color-coded Picsyms, but I think your ideas look much better.

    • I wish that I could! Those are PCS symbols so I can’t share the file (licensed, trademarked, whatnot). Diva has been able to use the included Symbolstix almost as well with good color coding and planning. We do get creative with some of the pictures — we might put a cup instead of the picture of “thirsty” for example.

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