Mary’s Story 1984: The Dawn of Augmentative Communication Device

Introduction

In the heart of the 1980s, a unique case crossed my desk at Christ Hospital in Jersey City. It was July 1984, a time when the home computer was just emerging. This story recounts my decade-long relationship with Mary Solares and her triumph in using augmentative communication to overcome a debilitating disease.

Meeting Mary: Understanding the Challenge

Mary was a dedicated pediatric nurse when she was diagnosed with Multiple Sclerosis (MS). Her husband, Henry, often spoke about her love for working with children. Unlike today, where MS can be managed with disease-modifying therapies, advanced symptom management techniques, and improved rehabilitation strategies, Mary faced a rapid onset of the disease. Within a short period, she began using a wheelchair at the age of 39.

Initial Assessment

Though my caseload was limited to Jersey City, Mary’s case reached me in the early summer of ’84 due to my prior experience with switch-operated devices. Upon entering her home, I was greeted by Carmen, Henry’s mother and now Mary’s primary caretaker. Mary welcomed me warmly, despite her physical limitations.

During the assessment, I observed that Mary could produce sounds, but her speech was no longer intelligible. Using head gestures, eye contact, and speech sounds, Mary could respond with yes or no to my questions and even laugh at some of my comments. I considered sign language, but Mary had very limited control of her hands and arms. Instead, I introduced a simple chin switch from my bag. Mary could consistently activate the switch by moving the right side of her head. My assessment concluded that Mary had severe communication limitations, making her an ideal candidate for augmentative communication.

Challenges in Acquiring AAC Devices

In the early days of augmentative communication, obtaining approval for AAC devices was challenging, especially given Mary’s specific insurance limitations. In 1984, Prentke Romich was the only company offering an augmentative communication device, and these devices were prohibitively expensive, costing thousands of dollars. Insurance coverage was minimal or non-existent, with most private insurance plans not covering AAC devices. Medicaid coverage was also unavailable in Jersey City at the time. These devices were often classified as “experimental” or “educational” rather than medical necessities.

The Promise of Home Computers

During the summer of 1984, the first home computers by IBM were entering the market. At computer shows, enthusiasts could purchase individual parts like cases, motherboards, monitors, and speech synthesizers to build their own PCs. This emerging technology held promise for creating affordable augmentative communication solutions.

Collaborating with My Father

After meeting Mary, I consulted with my father, Jack Burke, a recently retired systems analyst and programmer for Prudential Insurance Company. We discussed the potential of developing an augmentative communication program for Mary. My father was enthusiastic about the opportunity to help.

With my background in computer programming, I took on the task of assembling the necessary computer components. At a computer show, we acquired essential parts—a case, motherboard, monitor, speech synthesizer, and a small printer—for under $300, effectively creating an IBM XT equivalent. Combining my knowledge with my father’s computer skills, we built a communication device for Mary. This collaboration was a crucial step in developing an affordable and effective solution using emerging home computer technology.

The Device Design

The device we created featured a simple yet effective design. It had four rows of letters, and Mary could select a row and then a specific letter as it was highlighted. A speech synthesizer articulated the chosen rows and letters, allowing Mary to communicate fluently. Interaction with the system was facilitated by a chin-operated switch, enabling her to navigate the device independently.

The Moment of Truth

After about a month of programming, the system was ready. Despite a personal hectic period with the birth of my son, I managed to set up the device at Mary’s home. I provided a brief explanation of its operation and promised to return for more detailed training.

Mary’s First Letter

Five days later, I received a letter addressed to me from Kearny. Surprised to see a letter from Mary, I opened it with excitement. Mary, who had previously been limited to basic yes/no responses, was now communicating fluently through her typed words. Her intelligence and quick learning were evident as she expressed her gratitude and shared her thoughts.

The Letter: