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  • Writer's pictureMai Ling Chan

Taking Time to Listen (Excerpt from the book: Becoming an Exceptional AAC Leader)

Updated: Aug 6, 2023

This chapter is shared in memory of Jane Odom. 1966 - 2022

Jane is leaning over the table while looking at student who is smiling at her.
Photo credit: Chase Odom

 

My dream was to be an artist, but that idea did not go over too well with my parents. My mom was convinced that only weirdos went to art school and my employment opportunities would be limited. As a compromise, my parents allowed me to apply to the Tyler School of Art in Philadelphia, Pennsylvania. This is Temple University’s art school. I did not get in but was offered admission to Temple with the ability to transfer to the Tyler campus after my freshman year.

As I started to explore classes, I thought becoming a teacher might be something I would enjoy doing. I majored in education. The program allowed me to get a dual degree in both elementary and special education.

All was going great. I loved my classes, joined a sorority, and became active on campus. Going to school in Philadelphia was great fun with lots of wonderful culture, museums, festivals, and more.

Then came time to do my student teaching. My first placement was in a school that served students with cerebral palsy and other physical disabilities. The class I was in had about ten students who had a variety of physical challenges. I had never worked with kids with special needs before and had no idea what I was doing.

Unfortunately, the lead teacher had the expectation that I knew what I was doing, and instead of giving me guidance, spent most of the time criticizing me. It was so discouraging. She tried to fail me and suggested that I NEVER teach….EVER. I sat down with my professor and she agreed I had completed all my required hours and objectives and ended giving me a B in the class. But those words stung. I questioned my aspirations and myself.

My second placement was amazing. I was placed in an inner -city school with an experienced teacher who was so encouraging and patient. She taught me so much and gave me back some of the confidence I lost in the previous placement.

I graduated with a dual degree in Elementary and Special Education from Temple University in 1987. I was excited to get into the classroom and work with children. I began teaching in inner city Philadelphia. It was a tough job, there was not a lot of funding, and I was often picking up extra shifts as a waitress to make ends meet. This allowed me to get what I needed for my classroom. I remember the ditto fluid to run copies was like gold, and there never seemed to be enough paper, books, or other needed materials. However, I loved the students and tried to create a fun, learning environment with what I had available.

One day, my college academic counselor called about a new program at the university. Funding was available for a small set of students to work at a graduate level in the field of augmentative and alternative communication (AAC). I had no idea what that was, but was willing to explore, especially since I would be fully funded.

Even though I had limited knowledge of the use of AAC, the beginning classes helped us explore a variety of tools that were available to help students. I was intrigued, because at the time, there was not a lot of technology available. Students who were nonverbal often had lap trays on their wheelchairs with a variety of keyboards and /or pictures that they would point to or look at to communicate.

One of the classes in the university program was called ACES (Augmentative Communication Empowerment and Support). It was a two-week seminar where students, professionals, and adults with communication disabilities came to campus and stayed for two weeks in the dorms while attending classes on a variety of topics.

I came in on the first day of training wide-eyed and ready to learn. Little did I know how this day would change the direction of my career. Bruce Baker, world-renowned creator of the Minspeak® system, was there to train us on the language system he had developed called Semantic Compaction. It was a way to code language so those using it could reach any word in three hits or less. I was able to borrow an AAC device called a Liberator. I spent the next day at my apartment complex’s pool learning the language patterns and icon meanings. I loved it.

During those two weeks, I got to know a variety of amazing people including actual AAC device users. I learned how capable and unique each person is and about a variety of access methods, device settings, and why core vocabulary is so very powerful.

Each word had a unique icon sequence. Icons on the system were chosen because they could represent a variety of categories and vocabulary. For fun, I created a game and gave everyone involved in the program their own icon sequence.

The staff member in charge loved the game and, ultimately, I was encouraged to keep going, encouraged to consider this field as my career path. Little did I know my professors noticed: Dr. Diane Bryen and Dr. Amy Goldman were integral in helping me discover this amazing field of study.

I was asked to come back each summer as the communications instructor. Each ACES session was so different depending on who attended. Although I was there as an instructor, I learned more from the attendees than they could have possibly learned from me.

The first year, I was paired with one of the students who used AAC. This young man, in his 20s, had cerebral palsy and used a wooden board with the alphabet on it to communicate. He would point to letters to spell his message. He was very quick and got irritated with me because he was usually on word four when I was still figuring out the first word he spelled.

At this time, his staff was trying to convince him that he should live in a nursing home due to his disability. As I eventually learned, this man was incredibly intelligent and had no desire to live in a geriatric nursing home for the rest of his life. But, since his communication method required a knowledgeable communication partner who took the time to spell out his message, his attempts often went unanswered.

In the early 1990s, he came to ACES. We got him a communication device, and my job was to help teach him the language on the device. We practiced and practiced, and he caught on quickly. He began telling his staff exactly what he thought of their idea of living in a nursing home. His voice was heard.

In 1993, President Clinton appointed this young man, Bob Williams, as the commissioner for the Administration on Developmental Disabilities (ADD). He presided over a network of services designed to increase the independence, productivity, and community inclusion of Americans with disabilities and their families. Even with all these responsibilities, Bob sometimes returned to ACES for graduation, sharing his story and inspiring others. Could he have done this living in a nursing home? I think not.

This had—and still has—such a powerful impact on me. I learned how important it was to have a voice and learn to use it. I could see firsthand, how an AAC device could change someone’s livelihood. I wanted to help more people do this.

However, at the time, my reach was limited. I had moved from Pennsylvania to South Carolina. Funding was not available from the state Medicaid program for devices and schools claimed to have limited resources. Many students who could have benefited from the technology were not given the opportunity to get the technology.

I began teaching at a high school. I had one student, Francis, who was 18 years old. Francis had cerebral palsy, which limited his vocalizations. He was smart, creative, and had a great sense of humor. Because he had no way to communicate effectively, very few got to know him. Francis would make a certain face when he was upset. Classroom staff called it his pineapple face. One day, Francis and I were working in the library and he made that face. We played the “yes”/“no” game where I asked a variety of questions to determine what was wrong. He looked up for yes and down for no. After multiple questions, I figured out that something was very wrong, and he wanted me to call home. I called home and Francis’ dad answered. I explained what had happened in the library, and his father didn’t know what could possibly be upsetting his son. I looked over at Francis to see him absolutely cracking up. It was all his way of playing a practical joke on me. He really needed a way to express himself.

I started the process of writing an AAC evaluation with his speech-language pathologist (SLP) to submit to his insurance company. I also began doing AAC evaluations for other local school districts. These experiences led to presenting at the state’s Assistive Technology Conference. After my presentation, an entrepreneur named Chip Clarke, who had a business called Assistive Technology Works (ATW), approached me. He asked if I would consider leaving my teaching career to work for him as a consultant? I jumped at the opportunity, and my fulltime AAC career began.

ATW was a reseller of a variety of products including AAC devices, environmental controls, classroom supports, and even one of the first eye-gaze systems. Chip was a businessperson, and he taught me about the business side of the industry. This job laid the groundwork for the rest of my career - and I loved it!

As you can imagine, with technology, the hardware is constantly changing. When I first started in this area, AAC devices had static displays with paper overlays. Many people still had paper overlays taped onto wheelchair trays and symbols were reorganized constantly. The first actual devices I worked with were large, boxy, and voice choices were limited. Perfect Paul and Kit the Kid were standard built-in synthesized voices.

Then came dynamic displays. Programming was more versatile and could be easily customized. Funding became a bit easier, but still not 100% recognized by insurance companies or state funding sources. Voice choices were improving.

South Carolina at that time was not funding any type of assistive technology. Parents who knew their rights were the only ones who managed to get technology for their children and usually had to threaten to sue the local school district. My territory also included North Carolina and Georgia. At least these states recognized AAC as a medical necessity.

While working for ATW, I got a call from Thompson, Georgia to help out a client with ALS that had just gotten his AAC device, the Pathfinder. I met Pastor Willie and his wife, Valerie, at a training that I was doing. I learned that Pastor Willie had his own church and was interested in staying active. I took some extra time and showed him a couple of tricks to help him preach again. We explored the use of notebooks in the device that would allow him to compose his sermon. I taught him how to speak it either all at once or one sentence at a time. We also looked at how to program in pauses in the sermon as he was speaking it from the notebook. Apparently, Pastor Willie’s church was quite demonstrative, so adding pauses for parishioners to respond was important. After a couple of weeks, I got a call from Valerie inviting me to hear Pastor Willie preach. No way was I going to miss out on that.

My husband Art and I piled the kids in the car and headed out to church. The congregation welcomed us with open arms. My youngest son, Chase, was about three years old and quite a friendly child. He and his brother, Mason, went to bible study with all the other children and then returned for the service. We sat in the back pew as my husband used a wheelchair and since the church was so small, it was the only place he could fit.

The choir sang and then Pastor Willie began to preach. The joy on his face was contagious and, as he spoke his sermon using his AAC device, he would often say ”Amen” or ”Praise the Lord”’ and the congregation would repeat the phrase. My youngest son could not wait until he could also yell out. He got so many high fives as we left. We went to the family’s home afterward and the entire family was so thankful and excited that Pastor Willie could continue despite losing his voice. These moments reinforce the power of having a voice.

But, as life changes, so do our goals. I decided to leave ATW and was fortunate enough to get a couple of job offers in the industry. Because of my time at Temple University and the ACES program, I really respected the Prentke Romich Company (PRC). I was fortunate enough to land a fulltime consulting position with them.

My husband Art and I talked one day about where we would like to go on vacation. I mentioned that I would love to see the Grand Canyon. He said if that territory ever became available, I should take it. Guess what happened? Eventually, the company needed someone with experience in Arizona. I was in the home office in Ohio when I found out and immediately called my husband to ask if he would be willing to give up his job and move across the country, he said, “Yes!” I applied for the transfer, and, in 2004, the company moved my family and me out to the desert.

Arizona has an amazing AAC community, and at that time, it also had great state funding. We were barely settled into our new home when I was invited to a community group called Out and About, created and organized by two speech-language pathologists, Deanna Wagner and Dr. Caroline Musselwhite (read Caroline’s story Challenges Demand Creativity: Teaming Up to Close AAC Gaps). This group met after school, out in the community and encouraged AAC device users to learn to speak to people who may never have met anyone using AAC.

Both of these amazing therapists are not only skilled with AAC but are also highly experienced with implementation and how to motivate students. They freely share all their knowledge, and I learned so much from working with them both.

Then the new thing that came on the market was the iPad. It was smaller, sexier, and looked more mainstream. It was also more affordable. Many viewed it as one-size-fits-all. It was assumed that any student could have and use AAC on an iPad. This did not account for durability, access methods, or product support. Although I was working as a consultant, I began exploring educational materials and techniques, true to my teaching background. This was back when a company called IntelliTools was in every special education classroom. I began working with this company on a statewide project where we looked at using IntelliTool software to help students learn to be better communicators and other educational objectives. Suzanne Feit and Caroline Van Howe were in charge of the project. Both were knowledgeable about the software, and also about how students learned best. Again, by teaming up with professionals who I could learn from, I was honing my skills.

PRC asked me to develop some therapy apps to help students learn vocabulary patterns and basic pragmatics. I didn’t know a thing about app creation or where to start. When I sat down with my colleague to talk about my fears, he simply smiled and said, “You’ll figure it out.” And I did. I found a developer and an artist, and created my first app. I ended up creating seven apps for the company, and each got better as I learned what would work best for our students.

It was during this time I became very interested in implementation, specifically what worked best with students and what did professionals working with AAC need to know to make their job easier. I learned the most when working directly with AAC users. In Phoenix, I was able to work directly in classrooms as well as with families at our Out and About groups. These groups are still active today and meet once a month in the community. They have expanded to a group downtown and one on the west side of town. Out and About not only helps students learn to communicate with those in the community who are not familiar with AAC, it helps spread the message of what AAC is and how to be a successful communication partner.

My next professional challenge for PRC was to develop a website to help parents, teachers, and therapists support their students using AAC. The AAC Language Lab was born in 2008.

I teamed up with some incredible colleagues to create this site, and I have been managing the site ever since. It is truly my dream job. The site is constantly changing and growing, as are my professional skills. For instance, I bought a book about HTML and learned new skills including basic coding and video production. It was truly like learning a new language and it took me a while to become efficient, but now, I can do much of my needed coding without having to ask for assistance.

All in all, it has been a journey and through many ups and downs, the website is now on its second edition. It is challenging and exciting to talk to professionals out in the field about what they need and how the website can help them. I love to find fun, engaging activities that get students excited to use AAC.

The AAC Language Lab website has also allowed me to be creative. It allows me to showcase new materials and techniques. I did not start out with any specific plan for my career but as I look back, I can clearly see how implementation has become my focus.

The Lab has also allowed me to mentor both AAC device users as well as up-and-coming AAC professionals. I love working with those just out of school and starting their careers. Many have had little or no exposure to the field of AAC, but with a little encouragement and training, many realize how rewarding this path can be. The more people are willing to learn, the more they can accomplish.

Generally, many who choose to focus their career on AAC do it for the sheer joy of giving someone a voice. The AAC community is also one of inclusion, and information and encouragement are freely shared.

I am thankful every day for a career that allows me such growth and fulfillment, and I’m touched by the support and friendship the AAC community has offered me, particularly in difficult moments of my life.

One such moment was July 3, 2018, when Art, my husband of 18 years, passed away at the age of 46. He had muscular dystrophy which caused his muscles to deteriorate. I can’t say his death surprised me, but I just didn’t expect it to happen when he was so young. We donated his body to science (as per his request), and he insisted that I not have a big funeral.

To honor him, we created a hashtag #ROK4ART (Random Acts of Kindness for Art), and the response was overwhelming. Colleagues from all over the United States, Canada, Israel, Australia, and Europe did random acts of kindness in Art’s memory. For the next month or so, I would open social media and see yet another kind act someone posted. So many people I knew from trainings and conferences reached out to honor my husband.

Going even further, my dear friend, Sheri Predibon, MS, CCC-SLP, offered her home so we could have a simple celebration of life for Art. My AAC family from all over Arizona, as well as family and friends from other parts of the country, came for the potluck party. We laughed, we cried, and watched video tributes people sent. I am so grateful for colleagues I call friends, and for their support through this very difficult time. I can’t think of very many industries that come together to support one of their own in the way this industry supported me and my family.

Recommendations

Thinking about the AAC community and its far-reaching impact brings me to a few simple recommendations for those of you interested in following a career path in AAC.

  1. Get involved. You can join a local, national, or international group of professionals and people using AAC. Talk to people, ask questions, and learn all you can.

  2. Attend conferences. The best way to learn about new technology and techniques is to attend one of the assistive technology conferences. There are state, national, and international conferences that are both live and online.

  3. Take advantage of social media. There are a variety of social media groups on different platforms which can help you connect with others to share information.

  4. Know it’s okay to cause a little good trouble. Challenge administrators to consider how important it is to provide needed technology to students who don’t have a voice. Challenge parents to think outside of the box and allow their children the chance to communicate independently. Challenge students to learn how important their voice is so they can be who they want to be.

When you hit bumps in the road, I hope you find motivation from these quotes I live by, and now share with you.

“Learning can only happen when a child is interested. If he is not interested, it’s like throwing marshmallows at his head and calling it eating.” - Katrina Gutleben

“The teacher thought I was smarter than I was, so I was.” - Harry Wong

Ways to Connect with Me

AAC Language Lab

LinkedIn: Jane Odom

Facebook: Jane Odom

Jane Odom is the AAC language lab training and implementation specialist for PRC-Saltillo. Jane represents PRC-Saltillo at regional, national, and international conferences, and she works regularly with SLPs, OTs, educators, and family members to address the needs of people with speech, language, and cognitive disabilities. Jane earned her BS and MEd degrees from Temple University and has more than 13 years of teaching experience in special education. She also was the language instructor for the ACES (Augmentative Communication and Empowerment Seminar) program at Temple University for nine years where she taught AAC device users alongside professionals about how to use and implement AAC devices in everyday life.


Odom, Jane, 2021, pp. (95-111) in Becoming an Exceptional AAC Leader by Chan, M. Copyright © 2023 Mai Ling Chan, LLC. All rights reserved.


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