Less than a month before Fern died she used magnetic alphabet letters on a cookie sheet to spell "mall". She was asking her daughter at the end of a session to take her shopping. Fern lived into her death.* She had continued as many of her daily life activities as long as possible.

I had known Fern since shortly after her diagnosis of Amyotrophic Lateral Sclerosis (ALS), often familiarly called "Lou Gehrig's Disease". She lived with her husband in a remote area of Oregon. He willingly brought her into my office for an assessment. After that first session he agreed to bring her in weekly despite the fact that the travel was three times longer than any single appointment.

They arrived with their daughter who was visiting from another state for the evaluation. They were terrified. This disease was progressing rapidly and they did not know how to cope with the almost weekly changes it was creating in their lives. This first appointment was four years prior to Fern's death.

There are many areas I cover with a client during a first appointment. Most important though is to establish the foundation of a relationship. Regardless of the speech intelligibility or the swallow safety or the daily survival needs, I need to begin forming a relationship that will sustain us until death, and frequently beyond death for the surviving family members.

This was easy to establish with Fern and her daughter, Erin. Both were eager for information and for comfort. During a first visit I attempt to stay away from "high tech" augmentative and alternative communication (AAC) devices. I attempt to communicate with the individual, as she is currently able or not. It allows me to feel as well as to observe the total communication needs. I also need to complete a thorough exam of all needs because this will assist us in selection of a communication system that meets those needs, and not just speech or talking replacement.

This first assessment revealed that Fern had attended school only through the middle grades. She did not know if her learning limits were the result of poverty or a learning disability or something else. Over the next four years I would come to know that the something else was the primary factor. I also learned during the oral motor speech examination that Fern would experience severe dysphagia** and dysarthria*** that would advance into anarthria*** before many more weeks passed.

Of critical importance I learned that this was not a family that I could just assess for a communication system and send them out the door. They needed to talk. They needed some insight to the "why us" and the "oh God, what do we do now." They needed slow introduction to this new life that seemed violently thrust upon them. They needed to learn that this new life was not going away and that it is possible to embrace its living process.

During the early weeks, it was important to Fern to talk without aids while I remained honest and direct whenever the communication between us faltered. We used this early time to assess her swallow safety needs as well as numerous independent living needs. As we were getting to know each other I would access different AAC tools to assist us with communication.

I would offer specific yes and no questions to redirect us back to topic. I would encourage Fern to try writing single word responses. Since she was close to illiterate, I taught her a simple sound based method of writing words. Later a telegraphic process was added to streamline her process and conserve her energy. This phonetic, telegraphic communication process partially sustained Fern until about a month before her death.

We explored communication books that were picture based but Fern rapidly eliminated those as she was learning functional and clever gestural processes to meet her survival needs. Instead we developed some basic flash cards that she kept with her for specific communication. Over the years these cards rotated frequently to meet her ever-changing needs.

Within those first few months her daughter decided to return to Oregon and stay with her mother as the primary caregiver. Erin became her mother's voice. She also became a proficient speech reader. Long after Fern became anarthric with no speech intelligibility the daughter could interpret her mother's lip actions to maintain relatively effective and reliable communication.

Erin also encouraged Fern to try some higher linguistic based communication processes. Together the two of them became acquainted with a LightWRITER**** . The first thirty days was an assessment period. They learned the basic skills and then began exploring together how it might serve them functionally. They continued to rent a LightWRITER system until about the last six months of the illness.

Together the two of them learned to manipulate the LightWRITER to continue using the phonetic, telegraphic communication process we had learned together in earlier weeks. The visual output could often look filled with errors but the speech output met our communication needs. As the weeks passed we evolved many telegraphic responses that were unique to this family and many that I have carried to other individuals as suggested means of communicating more expediently.

Fern required a hospital bed with bedside suctioning within the first year. We set up an alerter supplied from ZYGO Industries, Inc. that allowed Fern to access it during the nights and any other periods when Fern wanted privacy. With the use of Velcro, that alerter moved over the next three years to various locations during the days and nights. It was especially effective for alerting her daughter and Fern's husband to bowel and bladder needs. The alerter also allowed the daughter to provide her mother with some private times until the ALS wasted away her sitting balance skills.

The other invaluable use of the alerter was that I was able to change the access switch as Fern's upper extremity weakness progressed. She only changed switches three times during the last three years but each time she maintained some quality of living as well as some control over her environment.

Throughout the four years I learned again and again that our work together, our relationship, was not about the things. Yes, we needed the different assets such as the LightWRITER and the alerter and the magnetic alphabet letters. We also needed all the creative, homemade "low-tech" systems we put together. But what made our four years real was the living process we evolved together.

This living process was evident when Fern used the LightWRITER in creative graphic outputs to state her needs; "Spit stuk n throte." It was evident again when Fern used those magnetic letters to ask to go to the mall. Even when she used her right foot during the last four to eight weeks to communicate it was further indication of this living process. She had no other volitional movement those last days. Yet she could express many feelings and needs using her foot.

Fern could move her foot to exhibit accurate yes and no responses. Her foot also expressed anger, sadness, joy, confusion, frustration, interruption and a full gambit of additional feelings and needs. Just when you had thought she had drifted off to sleep that foot would start to move letting us know she was giving input and we were not to overlook her.

This foot communication system worked because of the all the time and attention that was focused on developing Fern and Erin's relationship. Through the life process they learned all the subtle distinctions of each other's personalities. We were able to evolve constantly changing communication systems. Again, we nurtured and fed a living process from the first breath together until Fern's last breath.

During my last visit with Fern I found that I needed to sit where I could watch her foot but also remain close to her face. Fern needed touch. I believe she remained in communication until that last breath because her daughter, Erin loved her mother in those final four years with a tenderness we all crave to know. Erin gave her mother humane and intimate care while taking time everyday through the total communication and life processes to connect meaningfully with her mother.

Before I left that last day I spent a few minutes alone with Fern to say goodbye. Not only did I speak to her about her strength and courage, I held her hands, kissed her face and stroked lovingly that right foot. I thanked her for coming into my life with a presence of living I will treasure and honor always. I told her one more time that she had taught me many invaluable life lessons that would be carried to the next individuals needing this life process.

Fern had proven to herself and her family as well as clarified for me that her illiteracy was only in part secondary to poverty and lack of schooling. For the first time in her life she exhibited consistently that she was smart, able to learn and above all, loveable. Prior to the diagnosis of ALS Fern had accepted being "stoopid", being "just a mom", being "not needy" and many other self-deprecating feelings. The life process of embracing ALS and its ever-changing course opened a new way of living for Fern.

Fern's daughter, Erin, benefited those four years by living alongside her mother. As in so many family systems Erin too believed she was stupid, unworthy of humane and adoring care and that she was not making much of a difference in this world. I watched Erin come to awareness that her greatest work to date was as the primary caregiver to her mother. I watched Erin's spirit strengthen and evolve as she lived each moment fully. I watched Erin come willingly as the primary caregiver to her mother, and then to grow in love and respect for her own emerging, conscious self.

This life process is an augmentative communication system. It is about using low and high tech tools to provide varying means of communication for an individual, the family and the caregivers. It is about encouraging the growth of the primary relationships so that as the physical condition changes all involved in the care are able to communicate at each changing level of the illness. It becomes a total communication process of using conventional augmentative communication tools while creating unique working methods humans are possible of developing. This evolves toward accessing and employing intimate, authentic relationship dynamics.