The Things We’ve Tried.

Sign Language

  • We started with “more” and then added “eat” and “again”. Diva learned “more” in a a week or so.
  • What worked: It gave her a way to say “I want something” quickly and could be used across all environments and activities.
  • What didn’t work: Diva has fine motor difficulties and her signs were approximations. Only immediate family and her teacher understood her signs. Because she only had 3 words, she would use them for EVERYTHING. It was clear that she did not have enough words to express herself.
  • What we learned: She needed a way to communicate that everyone would understand. She needed more words. She needed something that would not rely on super dexterity. We just didn’t know what, since vision is always a question mark.

Big Mack Switch

  • At the same time as introducing a few signs, we set-up a Big Mack switch near the TV to say “I want to watch a show!” because that was a huge source of frustration for her.
  • What worked: Giving her a way to communicate and giving her continuous access. Even though sometimes she would hit the button repeatedly, we never took the button away from her. Her frustration in the form of screaming and yelling dropped. She had a high amount of interest in the SOUND.
  • What didn’t work: It was only doing one thing. We could have re-programmed it all day, but that didn’t feel meaningful or different from sign language. She wouldn’t have HER voice. She would be saying what we guessed she wanted to say.
  • What we learned: We needed to know more about how to support her to communicate with her vision impairment. The “prerequisite” or “basic” stuff wasn’t decreasing her frustration enough, because she had more to say. But we didn’t know what we could do, since she could not see to choose from pictures.

PODD Book

  • And then we met her current private SLP, who is amazing and awesome and all about presuming competence. She introduced us to the concept of a PODD book, which is a system for communication that can be adapted to fit pretty much any child with any type/level of need.
  • What worked: Someone believing that she had more to say than just, “Juice!” It was organized in a really user-friendly way and was super accessible. She could use partner-assisted scanning and play to her auditory strengths. She didn’t have to have any motor control. She didn’t have to have any “prerequisite” skills either. Even if a child has very little conventional communication skills, they can begin to learn to use a PODD book as the people around them co-construct messages and make meaning with their actions.
  • What didn’t work: School was clueless. We sent videos. We sent worksheets. We sent handouts. School was clueless about how to implement it, and also did not seem to believe that pragmatic functions other than requesting should even be on the menu, so to speak. Diva also got frustrated by scanning at times.
  • What we learned: Our daughter had a lot to say, and she needed people who believed in her. We learned so much about the functions of language, the importance of robust communication systems, of having options, of how to model language, of how to ascribe meaning, of how to support our daughter to be a better communicator. Linda Burkhart’s stuff is still my go-to for thinking about goals and true communication, communication that is more than just “I want cookie.”

PODD Book on iPad

  • We didn’t want Diva’s PODD book to get destroyed when on a water vacation, so we put it on the iPad using Proloquo2Go just so that we would have something. We were planning on using partner-assisted scanning, but she started touching and banging on the screen enthusiastically so we let her have lots of time to play and explore, during which we talked with her.
  • What worked: She LOVED, I mean, LOVED having a “voice”. She loved being able to push the buttons herself. She laughed and danced and laughed again. She was so joyful. She wouldn’t let other people touch it, pulled it back from them, and claimed it as her own. Electronic made it really easy to adapt and change things as we needed.
  • What didn’t work: Not enough buttons! We expanded her PODD 2x during this process. Every time we raised the bar, she followed. We also had concerns about her using the iPad as her device, because she was used to watching her videos, listening to stories, talking about the alphabet, and playing games.
  • What we learned: Mostly, keep raising the bar. Stop letting other people dictate her limitations.

Tango

  • We really wanted to try a device that had been designed for children who had significant disabilities and used a lot of social language. The Tango has a raised grid, buttons similar to the iPad (rather than a touch screen), and auditory scanning features.
  • What worked: There were new options for talking available for her.
  • What didn’t work: Everything else. The pictures were too small. There was little contrast. The editing and ability to design phrases and words was pretty impossible. And Diva HATED the auditory scanning. I mean, every time I turned on the auditory scanning, she threw the Tango across the room. Hard.
  • What we learned: Diva wants to direct select. She wants to speak for herself. And she needs all the words, as one of my favorite blog moms says. Also, we learned that high-tech dynamic display devices help bring you into community. This is the first time that other people started talking to Diva, including her brother. Her brother LOVES that she can talk to him now (even though sometimes now he wishes she would stop, I’m sure! As brothers and sisters do).

Speak for Yourself

  • I read about Speak for Yourself via online searches, and fell in love with the idea of planning an AAC app so that the words NEVER MOVE. The blog is phenomenal and teaches a lot about AAC in general. We used the trial version successfully, so we bought the app to use with her.
  • What worked: All the words! There were all the words! And high contrast! And all the words! And they never moved! And only 2 hits! She was able to hit “want” in the trial app pretty quickly.
  • What didn’t work: It was really, really hard for Diva to access the buttons. We felt like, yes, she has all the words, but we can’t open very many because they would be too close together and too small. She started banging on the iPad a lot and showing more frustration than she had in a while. It was a really hard decision to go in a different direction, because we love this app so incredibly much. We also worried about the voices, which weren’t always clear.
  • What we learned: Even the best of the best apps or devices (and I think SFU is probably close to the top, if not the top) may not work for everyone. Sadly. But we learned so much about AAC design, core words, modeling language, believing in the importance of a large vocabulary from that app, the blog, and the amazing designer.

Proloquo2Go (Self-designed)

  • And then I decided to take everything that we had learned about what works and doesn’t work for Diva and design our own, using Proloquo2Go. P2G is powerful for this because they have a HUGE symbol vocabulary and you can start from a completely blank template.
  • What worked: I customized everything. I customized the size of the buttons, the spacing between the buttons, and the colors of the buttons. I chose a 5×5 array. I kept the top left button clear because it would be easier for her to hit the home key. I used core words on the main page. I kept it to two hits, like Speak for Yourself.
  • What didn’t work: It’s working really well, except that space is still a premium. This design can hold, at most, 600 words. She needs more words. There are words like counting words and shape words and things that I would love to add for her but always feel nervous since space is a premium.
  • What we learned: Raise the bar, guys. Raise the bar. Diva started creating her own 2 word phrases to express things. And she speaks all the time about things I could never have guessed about. She speaks about way more than requesting. She tells me how she feels. She talks about her day. It’s changed all of our lives.

What did we veto?

  • PECS. PECS is a great tool, but it’s not a communication system. It’s requesting. It’s formulaic. It is limiting. Diva’s first conversations with her iPad were about her feelings — something that PECS would never have accounted for. Plus, Diva can’t see. School kept insisting on working on picture identification and PECS (or picture boards, I’m not really sure… People seem to forget that PECS and picture boards are not the same). And we kept saying, best practices in AAC say the “prerequisite skill” thing is out-of-date. Plus, she can’t see. Me repeating that to Diva’s many doctors and therapists is a common theme that will emerge in this blog, I think!
  • NovaChat/Touch Chat HD. We really don’t want any kind of app that relies on any sort of predictive framework. It could be something formulaic like NovaChat where there are boards sort of pre-designed. I would rather Diva only have single words for the next 20 years, but they be HER single words. Plus, she’s putting words together herself already and I love the way she does it. It teaches us about her thinking and her way of viewing the world far more than making “good sentences” would. She’ll get to the good sentences — but communication is more important than syntax, to us.

What’s next for Diva?

  • We are working on a 9×5 design of her board, which would open up her vocabulary to 1,000 words and maybe more. We are considering whether to stick 100% to the 2-hit rule, or whether we should consider 3-hits for a very few amount of things (e.g., months, pop music artists). We are still mulling over whether we can just move towards modeling Speak for Yourself now that she has some pointing ability (that gets stronger every day). I don’t want her to keep “outgrowing” her devices. At the same time, I don’t want her frustration level to be so high that she stops communicating. I’m really conflicted. Really, really. The major drawback is that I can almost certainly guarantee that some therapists/staff would not believe in or follow through with the use of SFU.
  • We are starting to use GoTalk Now for her to help us make experience books with photographs so that she can talk to people about her weekend, her trips, and special things. It would fill a conversational gap that may exist between her same-age friends and where she is with her device.

Accessories

  • Harness. Diva wears a Gab-N-Go harness. I learned about this online and I LOVE IT. I love, love, love it. It leaves her hands free to use her gait trainer, to scoot, to feed herself, to play ball — and yet her device is still RIGHT THERE on her. No one can take it away from her (my biggest fear). It’s hers, forever, always. She loves it too. I love it. It’s just amazing.
  • Keyguards. We haven’t made up our mind yet on key guards. We’ve tried one designed for her current P2G design and one for SFU. Diva gets super frustrated and tries to rip it off. After it won’t come off, she starts throwing her iPad and refusing to speak. We don’t know what the deal is. I don’t know if it’s because the fine motor is harder, if it interferes with her vision, or if it interferes with her tactile searching (which helps her remember where what she wants to say is located). Either way, we temporarily removed it and have been thinking about ways to alter it and see if that helps or not.
  • Stylus. We’ve considered getting Diva a stylus, because she sometimes uses her spoon or fork to try to touch the button. We’ve also considered adding something that she could hold because she likes to hold our index finger or pinkies to help her hold pointer. We haven’t yet added anything, but I’m sure we will do one of these two things in the coming weeks.
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2 thoughts on “The Things We’ve Tried.

  1. Pingback: Mission: Independence! | joyoutsidethebox

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