Eye-Spelling Sheets for PALS who can't speak

[jonico]

Lately, I've observed a number of CALS expressing varying degrees of frustration here with not being able to understand their PALS needs or wishes. My wife was unable to speak at all for about four years of her six year journey. It was particularly challenging before she got her Tobii Eye Gaze device. While recovering from a tracheostomy at a rehab facility, one of the Occupational Therapists shared the attached letter sheet concept (note both pages of PDF) for us to try. Nicole and I took to it pretty quickly and it was a life saver these past several years. It wasn't too long before I had the letters memorized and I could focus better on her eyes. Nicole usually only had her Tobii in front of her for a few hours early afternoon and once she settled in for the overnight. She could chat some with it before going to sleep and a fair amount before getting out of bed in the morning. She didn't want her Tobii on her wheelchair since she didn't want the view obstructed and it would have been near impossible to use while moving and in daylight anyway. When she got back from outings, she generally napped and then watched TV before getting ready for bed.

So...that left a lot of time when she needed to speak to us, but had no electronic device to do so. I imagine there a good many other PALS in a similar situation, and I hope you will find Nic's letter sheet helpful.

I would hold the sheet in front of her and start with the column on the left. If the first letter was not in the e-a-n-l-f-v column, I would progress to the rows. The rows start with t-o-s-d-p-k, since we already eliminated the column letters.

So here is how it would work: We had a standard place where the letter sheet "lived", underneath the TV. Even if the letter sheet had been set somewhere else, if she looked toward the TV our first guess would be that she wanted to say something and we'd ask "letter sheet?". We also found it easier for a "yes" or "acknowledgement" to be 'a look toward us' and a "no" to be 'glance away'. We found this to be easier for everyone she dealt with to understand than eye blinks. She found eye blinks tiring and frustrating. And observers often had a hard time knowing for sure if it was one blink or two. That was just our preference, but the letter sheet would be very hard to do consistently with the eye blink method.

So after her glance toward the TV, I'd ask "letter sheet?" and if she held my gaze and didn't look away, I'd grab the sheet. For the letter sheet it was too tiring to look away for every "no". So she would hold her gaze on the sheet while I spoke and only glance at me when it was a "yes"...no need to indicate "no".

For our example here, let's say she wanted a shower. I'd say column?, first row, second row, third row; at which time she I would get her first glance up at me. The first letter was in the third row. I'd say S; at which time she would glance at me. One letter down, and start over with the column for the second letter. You always have to go back and start every next letter search with the column to cover every potential letter each time. I'd say column?, first row; at which time she would glance at me again. I'd say T, I, H; at which time she would glance at me. I would likely guess "shoes" or "(bed) sheet", two things she would often ask for that started with SH. She wouldn't acknowledge those and I would start over with the column, to build on SH. I'd say column?, first row, second row; and she'd glance at me. I'd say O and she would glance at me. I'd likely guess 'show me something' or shower and she would acknowledge shower. The key is to go back to the column after each letter ascertained and start the rows with t-o-s-d-p-k, not the column letters. Aides will quite possibly have a hard time getting used to this, but they all got it with time and practice. A surprising number of people don't know the difference between rows and columns, so that can take some getting used to.

Also, on the back side was a chart of common needs. I would always start by asking Nicole if she wanted the spelling side. If she glanced away, I'd flip to the common needs boxes side. Of course you can make those whatever best suits your PALS situation and revise as needs change. On that side, if the need was her Audible Book, I would say row one, row two, row three, row four and she would glance at me. I'd then say chapstick, hot pack, book and she would glance at me. No need to ask about columns on the common needs side.

I kept these two sheets, back to back, in a plastic binder sleeve so the paper didn't disintegrate due to excessive use. We also understood glances in certain directions in her room to mean certain things; toward french doors leading to patio - close a curtain to prevent glare, or open door; toward the stereo - Chapstick (which was always in a container on top); toward gas fireplace - on or off; toward her bed - a suction, since that was where the cough assist always was, etc. Also, and an important one; if she glanced right then immediately left - that was wipe her face (which we did a lot) with Ultra-soft or Lotion Kleenex only mind you :-}.

I imagine you get the gist of it and I imagine most of you do similar. I just hope this helps some of those folks who have indicated they are having serious communication challenges now, or those who see the potential for some before long. During Nicole's years without a physical voice we had very few times where we simply couldn't understand her, and those times were usually due to me being dense or impatient.

All the best...Jon

 

[affected]

Thanks for this, what a great description of the use. That level of detail is so useful.

I designed all of ours, and the layout was different but we used a similar method. I had the vowels separate, so we could start by vowel or consonant.
I then also had the rows numbered visually and would ask the row number first so we could jump through the chart quite quickly. This really reduced the amount of time and energy.

You can use a head pointer and use this to point to the letters with your CALS simply watching and confirming. My Chris couldn't manage that because of his FTD, he needed me to guide the whole process.

I found that as Chris slowed in his ability to respond and things took longer it was critical I kept a pencil and paper and wrote his message or I could actually get a little lost and that frustrated him immensely. Chris had FTD and as it moved into the language phase of progression he had a lot of difficulty answering yes or no. He would mix them up, or he would take so long to respond I was on the next letter when he managed to indicate yes. It does take patience, and practice for both parties (and for workers who come into the home).

I made word and picture charts as well, and we broke them down into categories so there were less choices on each page.
We had a chart for when he was sitting out on the deck, one for when he was in the lounge room, one when he was in bed.

His ability to spell also began to seriously deteriorate so simple word charts and picture charts became more important than an alphabet chart as if the person cannot spell, it becomes extremely frustrating.

Making our own meant they made sense to us and felt more intuitive to Chris's particular needs.

This could be a great thread as I'm sure others have developed some great systems.