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Mary Solares, a dedicated pediatric nurse, in her nursing uniform. She later used augmentative communication as her primary means of communication.

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 coming into being. This story tells my decade-long relationship with Mary Solares, and her triumph to use augmentative communication when confronted with a debilitating disease.

Meeting Mary: Understanding the Challenge

Mary was a pediatric nurse when she was diagnosed with Multiple Sclerosis. Her husband Henry said she loved working with children. Unfortunately, unlike today where there are more ways to manage MS such as disease-modifying therapies, advanced symptom management techniques, and improved rehabilitation strategies, Mary fell victim to the quick onset of the disease. Before long, she was using a wheelchair at home, now at the age of 39.

Initial Assessment

And although my caseload was confined to Jersey City, her case crossed my desk in the early summer of 84, because at the time I had prior experience working with switches. 

Upon entering her home I was greeted by Carmen, Henry’s mom now Mary’s primary caretaker. Mary was sitting in her chair and was quick to welcome my presence. After a few short moments, I assessed although Mary that although could make sounds, her speech was no longer intelligible. However, using head gestures, eye contact, and speech sounds, Mary readily responded yes/no to my questions – and even laughed at some of my comments. Seeking to understand the possibility for sign language, I observed that Mary had very limited control of her hands and arms. I then took out a simple chin switch from my bag. Mary was able to consistently activate the switch by moving the right side of her head against it. My assessment was simple: Mary faced severe communication limitations, with little means for formal communication beyond simple yes/no responses. And as such, she presented as an ideal candidate for augmentative communication.

Challenges in Acquiring AAC Devices

However, in these early days of augmentative communication, and given Mary’s specific insurance, the prospect of getting approval was unlikely.

At the time, Prentke Romich was the only company offering an augmentative communication device. In 1984, these devices were very expensive, costing thousands of dollars. Additionally, insurance coverage was limited or non-existent. Most private insurance plans didn’t cover AAC devices, and Medicaid coverage was not yet available in Jersey. These devices were often classified as “experimental” or “educational,” rather than medical necessities.

The Promise of Home Computers

In the summer of 1984, the first home computers by IBM were hitting the market. At computer shows, you could buy individual parts like the case, motherboard, monitor, and speech synthesizer to build your own PC.

Collaborating with My Father

After meeting with Mary, I consulted with my father, Jack Burke, a recently retired systems analyst and programmer for the Prudential Insurance Company. We discussed the potential for an augmentative communication program that would allow Mary to communicate. My father welcomed the opportunity to help.

Given my background as a computer programmer, I took on the task of assembling the computer components. At a computer show, we acquired essential parts—a case, motherboard, monitor, speech synthesizer, and a small printer—for under $300, essentially 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 key step in creating an affordable and effective solution using emerging home computer technology.

The device we created featured a simple yet effective design. It had four rows of letters, and Mary would select a row and then a specific letter as it was highlighted. Additionally, a speech synthesizer articulated the chosen rows and letters. Interaction with the system was facilitated by a chin-operated switch.

The Moment of Truth

After about programming, the system was ready. Amidst 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, promising to return for more detailed teaching.

Mary’s First Letter

Five days  later, I received a letter addressed to me with a return address from Kearny. Surprised to see a letter this letter , I opened it and could hardly my eyes. Mary, who had no way of communicating beyond basic yes/no questions, was now speaking to me fluently through her typed words. Shaking, I continued to read, amazed at how quickly she learned to use the augmentative device with such minimal teaching. Mary’s intelligence and keen understanding were evident in her words.

The Letter

DEAR JOHN AND MARY,

FIRST OF ALL, I WANT TO CONGRATULATE YOU ON THE BIRTH OF YOUR SON JOSHUA.

MARY, IF YOU COULD HAVE SEEN THE LOOK ON YOUR HUSBAND’S FACE, WHEN HE CAME TO THE HOUSE THAT DAY, I BELIEVE YOU WERE STILL IN THE HOSPITAL. I’VE SEEN THAT LOOK ON MY OWN HUSBAND’S FACE.

I WANT TO TAKE THIS OPPORTUNITY TO TELL YOU HOW MUCH I REALLY APPRECIATED ALL YOUR LONG HOURS OF HARD WORK AND DEDICATED DEVOTION TOGETHER WITH YOUR FATHER. I DON’T THINK YOU REALIZE HOW THANKFUL I AM, AS THIS IS MY MAIN COMMUNICATION METHOD.

I KNOW YOU TOLD ME NOT TO DEPEND ON IT, BUT IT IS HARD FOR MY FAMILY TOO. WITHOUT IT, I COULDN’T EVEN WRITE A RADIO BROADCAST ABOUT YOU. I FEEL YOU SHOULD BE ACCREDITED SOMEHOW FOR ALL YOUR DEDICATION WITH WHICH YOU’VE HELPED SO MANY PEOPLE.

I CAN WRITE SO MANY LETTERS NOW, THANKS TO YOU.

I WISH YOU AND YOUR FAMILY MUCH HEALTH AND HAPPINESS. GOD BLESS.

P.S. JOSHUA IS A VERY SPECIAL BABY BECAUSE HE WAS BORN ON MY BIRTHDAY, SEPTEMBER 17TH.

See the actual letter here.

The Impact of Assistive Communication

For the next ten years until her passing, Mary used assistive communication device it as her primary method of communication. She wrote heartfelt letters to friends and family, helped her children with their homework, and even gave radio interviews about her experience. Augmentative communication gave Mary her voice back and allowed her to connect meaningfully with family and friends.

A Milestone in My Career and a Communication Aid Success

This experience marked the start of a significant chapter in Mary’s life and a milestone in my career as a speech therapist, as well.

This period was significant because many individuals with severe communication limitations, like Mary, suddenly and dramatically gained a means for expression. This new technology added a new dimension to the discipline of speech therapy and marked an exciting time for both therapists and clients alike.

Continued Improvements

Over the next couple of years, using my programming expertise, Mary’s program was updated to include word prediction and environmental control (for her lighting and TV). The device ran pretty much non-stop for close to ten years. With the help of the device, Mary simply went about the business of raising her children. This journey was a testament to the triumph of speech technology.

A Profound Experience

One visit stands out in my memory. Mary pointed to the corner ceiling, indicating she had left her body and viewed herself from above the room. She said it was not yet time for her to leave, and she returned. She conveyed that this was a beautiful religious experience that deepened her faith.

Final Moments: Reflecting on an Assistive Communication Achievement

Years later, I received a call from Mary’s family informing me she had taken a turn for the worse and had been hospitalized. They wanted me to set up her device in her hospital room. Upon entering her room, I found Mary in a deep sleep as I began setting up her device next to her bed. The room was quiet except for a radio playing music.

A Poignant Farewell

Nearing the end of the setup, a song by the Commodores started playing, and I was struck by the opening lyrics:

“Thanks for the times that you’ve given me The memories are all in mind.”

Given the present circumstance, I remember thinking that Mary might not be able to use her device again. Somehow, Mary found a way to thank me for my time and service.

Mary passed that evening, but her memory as a person and therapist will stay with me forever.

Conclusion

Mary’s story is a testament to the power of augmentative communication and the profound impact it can have on an individual’s life. Her journey highlights the importance of innovation in speech therapy and the incredible potential of technology to give a voice to those who need it most. This experience was a significant milestone in my career and a constant reminder of why I became a speech therapist.