Siobhan and the Wizard of Ounces

Presentation Proposal Accepted

CSUN Assistive Technology Conference
March 11 to March 15, 2019
Anaheim Marriott
Anaheim, CA 92802

Siobhan and the Wizard of Ounces

Abstract

Siobhan’s speech generating device is worn out and malfunctioning. The race is on to find a replacement, but nothing available suits her needs.

Extended Abstract

Communications Support Vital

Joseph Karr O’Connor, Linda Karr O’Connor, and Siobhan live in Santa Monica, California. Linda and Joseph help support Siobhan’s use of the Picture Exchange Communication System (PECS) protocols and Augmentative and Alternative Communication (AAC) systems.

We share from a parents’ perspective the struggle to ensure that Siobhan, now 26, keeps communicating.

Virtually every non-vocal person with developmental disabilities can acquire functional communication during 22 years of education. If every student left school with functional communication skills, the adult services world would become one where functional communication is supported and expected. Instead it is not and it is up to the family to provide support.

Despite the availability of low-cost, research-based communication methodologies which are successful if properly implemented, adults with cognitive disabilities who are non-vocal are often left with nothing but grunts and gestures to express their wants and needs. This is a deprivation of human as well as educational rights, and places them in potential danger as they resort to unwanted behavior to attempt to communicate. Siobhan is one of the few educated in functional communication. For her own well being, safety, and greater enjoyment of life, support of her communications systems are vital.

Acquiring A New System

Siobhan’s communication depends on implementing PECS protocols through the use of speech generating devices (SGDs). She is using a Tobii Dynavox Xpress, a model that is sadly discontinued. The Xpress is malfunctioning and held together with tape. The race is on to get an evaluation to prove to insurance that she still needs an SGD, evaluate systems, do trials, choose a system, submit the funding request to insurance, purchase the system, have it delivered, and do the configuration.

Form Factor

From experience we can say that the device should be small and light enough for Siobhan to hold with one hand and talk with the other. Form factor is an aspect of hardware design which defines and prescribes the size, shape, and other physical specifications of components. A small form factor is critical for Siobhan. It is most unfortunate that SGD form factor design has been engulfed by the design characteristics of the Apple iPad. “Just like an iPad!” chant the sales team. That is not the form factor Siobhan is looking for. A new device should be light and portable.

Symbol Set

Linda and Joseph attended PECS training presented by Lori Frost and Andy Bondy in 1997. Siobhan started using her first SGD, a DynaVox DynaMyte 3100, in 2003. From the experience gained through years of experimenting with symbol libraries it is essential that a new device must have a license to use PCS.

Voice

A person’s voice is unique and distinct. As Siobhan grew we changed the voice to best represent her age. A few years ago after some experimentation we settled on an adult voice that actually has an attitude, Susan by Loquendo. This voice or an approximation of it is essential to the way we percieve Siobhan to be. A new device should have a license to the Loquendo voice pack with the Susan voice.

Battery Life

If you are vocal, how many hours a day do you use your voice? The Xpress has interchangeable batteries so when power is low another one can be swapped in. This provides extended use. Unfortunately new systems have built-in batteries that only last a portion of Siobhan’s talking day. A new SGD should have interchangeable batteries.

Software

An essential component of a new system is software. The software that runs on the device should be easily and quickly configuable. We often have to update photos of new people in Siobhan’s life, add a word, and change the function or location of a button. One essential feature is the ability to do a word count so we can determine if usage is up or dowm. If communication is up we know that our methodologies are working, if down we need to pinpoint the cause and devise and implement a strategy to encourage communication. A new device should have word count as a software feature.

In addition to the software that runs on the device, there is also companion computer software. This can provide a way of downloading the device database, editing the screens, and uploading the new version to the device. Bonus points if it is platform agnostic. Special mention if it includes backing up to a remote server. A new device should have flexible and powerful computer software.

Secret Weapon

We are very fortunate to live within driving distance of the Center for Applied Rehabilitation Technology (CART) at the Rancho Los Amigos National Rehabiilitation Center in Downey, California. CART provides a number of services and one of them is evaluations for AAC systems. Carlene Yonemori and team members did a speech evaluation of Siobhan and recommended that she continue use of AAC systems. They then made some suggestions about new systems and with our input selected potential systems. They arranged for trials of the systems. Then Siobhan met the Wizard of Ounces and the magic happened. But you’ll have to come to our presentation to hear all about it. See you there!

CSUN 2018, A Spoon Too Far

First Contact

In March, 2000, I went to the California State University Northridge’s Center on Disabilities’ 15th annual international Technology and Persons with Disabilities conference, known as the CSUN conference.

It was at the Hilton Los Angeles Airport and Los Angeles Airport Marriott Hotels, California, about a 20 minute drive for me.

I didn’t attend the conference, I went to the exhibit hall looking for assistive tech for my non-vocal daughter, Siobhan, who was communicating confidently using the Picture Exchange Communication (PECS) system with cardboard icons in a Pyramid communication book.

In the Future, Computers Will Make Our Lives Easier

I heard of speech generating devices but wasn’t sure that introducing that level of complexity would be productive. Tech takes energy to program and maintain, and I had my doubts. Don’t forget, we had just gone through the Y2K debacle, which near as I can tell erased much of the productivity gains made by using computers in the first place. I had my first internet account in 1989 and I’ll tell you, we were productive. See alt.devilbunnies.

I was into my second year of leading web teams making accessible web sites for Pasadena City College after being in computing for nine years. I knew that when you needed tech the most it sensed your need and froze or the power went out. At one of my systems-admin jobs we had tiki gods protecting each server. I still have one in our family room, a spectacular three foot African head. We were serious. But for Siobhan we needed sustainable, stable tech that would survive an earthquake if needed. The paper-based PECS system was stable and needed no batteries. Six days into an earthquake-caused power outage would have almost no impact on operability.

Nonetheless, to this day I leave no stone unturned to help Siobhan.

Astounding Science

At the exhibit hall I was astounded by what I found. The most interesting was that a company called DynaVox was about to release the DynaMyte 3100. With a small form factor, powerful speakers, and ruggedized case, it seemed to be the device for Siobhan.

The DynaMyte would use symbols by Mayer-Johnson. This was the Picture Communication Symbols (PCS) that we were already using for years and which worked best for Siobhan. This was excellent. Yes, there was a built-in battery, not reliable in a sustained emergency, and it was four and a half pounds so Siobhan could not carry it and use it at the same time. The good news is that we would have the freedom to do the layout to approximate the communication book ourselves. The DynaMyte was very interesting and two years later Siobhan was using one. She’s now on her third DynaVox device, the Xpress.

A portable speech generating device is the essence of a life changing technology. This is what the conference and exhibit hall mean to me and my family. Life changing.

An Honor To Serve

In September of 2005 I was asked to help make the web accessible at California State University Northridge. Since I already had a deep appreciation for the school that produced the CSUN conference every year, I considered it a high honor to serve. I attended my first conference as a staff member the following year in 2006. While listening to all the great speakers I realized that my accessible web team should be contributing. I think it was for 2007 that I did a proposal and was accepted. I believe I’ve attended and spoken every year since 2007.

High Points

I have had some memorable high points like the time I presented with Dennis Lembree about his accessible Twitter web client. Dennis is a shining example of accessibility practitioner and all-arond wonderful human being. A mensch.

And nothing will ever beat the high point in my entire presenting career when Glenda Watson-Hyatt @GlendaWH allowed me to present with her about the use of speech generating devices and how some users needed to use PECS methodology as a foundation, while others with different cognitive abilities don’t. Glenda is a stellar presenter. Some of the participants at that presentation had life changing experiences. Ask Glenda Simms the @goodwitch about it.

Shared Experiences

Glenda and I went out to eat once in San Diego and on the way we saw a power wheelchair user flying a warning orange flag flapping in the breeze zipping along doing about twenty miles per hour down the sidewalk. The whole chair did a little hop when the driver took the curb-cut at speed, and proceeded to cross the intersection without slowing down. It was a very serendipitous sight. We both came to a stop to share this moment and watch the woman recede into the distance at a rapid clip. What can you say? It is shared experiences like that which mean so much to people who are often isolated in their lives. They make CSUN especially powerful to the community of people who gather there each year.

Planning A Presentation

Planning a presentation proposal for CSUN takes some effort. What can I cover that hasn’t been covered before? What is my experience telling me about augmentative and alternative communication or web accessibility that will still be relevant in about five months time? What do I have to say that is unique, why should I be the person telling this story, what can I bring to the conversation? This year I also had another issue to deal with.

Spoons

In April of 2017 my health took a major turn for the worse. Due to complications from a hospital stay and a long term condition in my left leg I developed excruciatingly painful burning spasming chronic open wounds. Despite the many doctors I’ve consulted and the wound care specialists I’ve seen the wounds have not progressed toward healing. Because I don’t take any drugs that affect me from the neck up I have steered clear of pain treatment with opioids, so I live in excruciating pain around the clock. There are some major life adjustments I make to gain minor pain relief, but I’m still faced with an immense energy drain. I like the spoons analogy: I get a random finite number of spoons to get me through the day. When the spoons run out, I’m done for the day. Some days I have enough spoons to make it through the day, some days I don’t. Today I had one spoon and wrote most of this on my phone in bed with the electric mattress cover keeping me warm. No spoons means no activity. I ascribe this setback to a new drug I took yesterday that probably is the cause of maximum pain in my liver and kidneys. Now I hurt egregiously in two areas. Not progress. Called doctor, agreed to stop new drug. One spoon today.

Now I Knew Everything About Pain Except Why It Hurts

That was the title of the CSUN conference proposal I did last October. I didn’t apply lightly, I thought very hard about the pain and where I might be by conference time. I booked a room at the conference hotel so that if need be I could rest my leg until presentation time. I’m very actively seeking a cure. I put in the proposal and was accepted.

But now I’m looking at my situation and the average number of spoons I get and I’m afraid. I can’t do the two and half hour drive by myself, and other means of transport will take more energy than I have. This means in my current state of health I can’t present and my health has not shown much signs of improvement. So I have to contact the conference people and tell them I can’t do it. There’s another complication too, but I’m too drained to continue. I did a presentation about pain and possible changes to interface design at ID24; please look it up. You can read the slides from that presentation if you want.

Members of Congress can send me prayers and thoughts, the rest of you might want to share actual thoughts about this at @AccessibleJoe on Twitter.