The Gift of Words

by: Karen Raber

Imagine for a moment that you are six years old. You long for a pet dog, love french-fries, and like Berenstain Bear books. But you are stuck with a significant problem: you can’t talk. No one knows your preferences; in fact, your family isn’t sure you have preferences or if you can even process thoughts because you never say any words or nod your head. Now it’s your seventh birthday, and your family has planned something special. You feel excitement as you travel toward your favorite restaurant, but… they turn in at Spaghetti Warehouse. “Can’t we please get some fries at McDonalds?” you want to say, but your tongue won’t formulate the words.

After dinner, you arrive back home, and Mother says, “Now here’s the real surprise!” Daddy is holding a round bowl in which the proverbial gold fish is swimming laps about the perimeter. “Its name is Goldie!” announces your sister. “Isn’t it pretty?” Well…Goldie is alright, but you had wanted a dog for years! You had imagined how it would jump on your lap, lick your face, and wag its tail. You had imagined how it would cock its head and look at you with understanding eyes because it couldn’t talk, either. But Goldie won’t be doing any of those things. Daddy places the bowl on the side table and chooses a story for bedtime. It’s Hop on Pop by Dr. Seuss. “No, no, no, Daddy,” you wail inwardly, “Don’t you understand I’m past that level? I want you to read The Berenstain Bears Love Their Neighbors!” You feel trapped inside an uncooperative body as you listen to Hop on Pop for the one-hundredth time. Then Mother tucks you into bed and kisses you. At that moment, you wish more than anything that you could tell her how much you love her. The frustration of it all causes tears to trickle down your cheeks, making poor Mother worry. “Oh dear, you must be sick!”

Okay, let’s stop imagining. Most of us reading this article aren’t six, and most of our tongues can formulate words. We feel understood. But this frustrating scenario may provide us with a glimpse of how life feels for children who are, indeed, trapped inside an uncooperative body. For them, the blessing of being understood is only a dream. How do you suppose a non-verbal child would feel if someone introduced them to a device that could talk for them? Wildly excited, maybe? Well, here’s the good news: a company named PRC-Saltillo has been making these dreams an exciting reality for children and adults for over fifty years!

PRC-Saltillo is a company that started out small, but because its founders had a great vision, it has grown into a phenomenal worldwide organization, giving a voice to 50,000 individuals annually. Ed Prentke, who worked at a local hospital, and Barry Romich, an engineering student at Case Western University, established it in 1969 as The Prentke Romich Company (PRC). Because they both had the vision to help individuals with disabilities, they combined their talents and set up business in Romich’s basement. They worked to create assistive technology primarily for those with spinal-cord injuries. At the time, the goal was to enable individuals to do things such as operate light switches and answer a telephone. Soon, however, the focus of PRC shifted from general assistive technology to communication. Technology was moving toward synthesized speech and computers, and the company worked toward communication solutions for people with severe physical disabilities such as cerebral palsy and ALS.

The enterprise grew and was moved to Shreve. At this time, a young teenager who would play a vital role in the future of PRC began his employment there. Dave Hershberger was sixteen and a sophomore in high school, but because of his family situation, he contemplated dropping out of school and acquiring a full-time job. Fortunately, Dave had a guidance counsellor who didn’t think that was a good idea. Knowing that Dave enjoyed working with electronics and technology, he arranged for him to work half-days at PRC while attending school.

Dave loved working with technology, and he remembers the time clearly when he realized that this particular field was where he wanted to work for the rest of his life. The company had been working on a project for several years, and finally, it was time to test their technology with several clients from Houston. One of these clients had cerebral palsy, and another had sustained severe head injuries. It was the first time Dave interacted with the clients using the technology he had helped to create. After seeing the difference AAC (augmentative and alternative communication) made for these individuals, Dave realized he could never find anything else that would give him the same satisfaction.

By 1995, Dave was in charge of engineering and longed to work with a broader spectrum of individuals. The devices they had at the time were sophisticated and quite effective, but only for a specific population. Dave saw that there were others who had language or cognitive barriers such as autism or Down syndrome and was interested in bringing them into the AAC family. At the time, PRC was unable to work toward that goal, so Dave formed the Saltillo Corporation in 1996. Saltillo operated independently until 2007 when the companies rejoined at PRC’s current location in Wooster. When Dave became the CEO in 2018, the two companies were merged with the name PRC-Saltillo.

PRC-Saltillo is excited about the interest in AAC spreading across the world through technology information sharing. They now have offices across the United States, and also in the UK, Canada, Germany, and Australia, and are providing products to several other countries who have organizations wanting to work with PRC-Saltillo. Because they have devices in English, Spanish, Hebrew, Arabic, French, German, and Dutch, thousands of people across the world are speaking for themselves and being understood! And now, it’s time we meet Bella, one of PRC-Saltillo’s enthusiastic fans! Bella Yoder is ten years old, sweet, sassy, and loves words. Like any typical ten-year-old, Bella loves to talk. Talking for Bella, however, is anything but typical! To communicate her opinions and thoughts, she uses her AAC device, which looks like an iPad but has been custom built by PRC-Saltillo to provide the access options Bella needs. To speak, Bella must first choose a group of organized words in her AAC device with the switch mounted on her wheelchair. The device reads the words to her through a small speaker beside her ear. She must then, with a series of taps to her switch, choose the words she wants. The device then speaks the words audibly, so that those with her can understand what she wishes to say.

If Bella had been born sixty years ago, communication might well have been as attainable for her as choosing to climb Mt. Everest! Bella was born with a rare disorder called GM3 synthase deficiency. Her body is unable to produce the enzyme GM3, which is vital for brain and neurological development. When reading about her disorder, there are phrases such as “severe intellectual disability”, “devastating neurological disease”, and “complete dependence”. Words such as these can be extremely disheartening to the parents and caregivers of individuals with GM3. Interestingly enough, Bella’s parents, Craig and Julie Yoder, had attended a conference where they were told that no individual with GM3 had ever achieved reciprocal communication. Imagine the consternation of the Yoders; Bella had already proven that study to be false! As Julie says, “Those words don’t tell the entire story, and they should never be used to define an individual’s potential. Even children with significant disabilities are able to communicate! It’s a very unfair statement to say that a child is incapable of communication if you aren’t giving them the tools they need to accomplish it. If you would tell me to bake a cake but not give me the oven, I couldn’t bake it.”

Fortunately for Bella, she has wonderful parents and has been surrounded by a fantastic group of teachers and therapists. Bella’s parents had observed her inquisitive eyes since she was a young child, and felt that she comprehended what was happening around her and what was being said. What she had lacked was a tool that would give her a voice. Bella went through a great early intervention program and has been attending the Holmes County Training Center since she was four years old. It was here that the groundwork was laid that would be so essential to using an AAC device.

Although Bella’s school was incredibly supportive, AAC devices weren’t a customary solution for non-verbal students. It was an interesting event that first introduced the Yoders to AAC. They had recently bought a bed from Marlin and Lisa Miller (owners of this magazine), and because the bed wasn’t working out for them, Julie had advertised it again. The buyer was a very kind lady who happened to be the wife of one of the developers at PRC-Saltillo! In the course of their conversation, they talked about Bella’s disability, and she said, “Well, maybe someday Bella can use a device like the ones my husband works on.” After she left, Julie looked at the PRC-Saltillo website and she knew that this was just what Bella needed.

But it wasn’t as simple as just buying a device and handing it to Bella. Every person is unique and their needs vary, which is why PRC-Saltillo offers a wide variety of access options for their devices. Some children may be able to operate an iPad, and downloading the company’s apps may be all that’s needed to give them a voice. Others need more unconventional methods to communicate. One of these options is a device operated by a switch. By using a hand, knee, elbow, foot, or other body part, the switch is activated, allowing the user to select words, letters, or symbols as they are being highlighted by the device. When an individual is unable to control a device through touch, one option may be Look, a high-tech eye-tracking module, which detects where the gaze of the user is concentrated and then makes selections accordingly. Another option is NuPoint. This method uses optical sensors to track the user’s head movements to make on-screen selections. Which one would be right for Bella?

At this point, Bella’s speech-language pathologists (SLPs) at Akron Children’s Hospital, in Ohio, played a significant role in pairing Bella with the device appropriate for her. This evaluation period was overwhelming but also informative. Her pathologists first tried eye-gaze and head tracking without success, but when they tried auditory scanning with a switch, it clicked for Bella. She needed to learn how to operate the switch while listening to the auditory commands of her device, and remember the order of the words. It was hard work, but an exciting new world unfolded for Bella!

At first, Bella worked with eight words including more, stop, go, yes, and no. When she had mastered those, she was given sixteen words. Then one hundred. Bella’s parents were amazed and delighted to see the transformation in their little girl. She was able to communicate, and it was as they had thought—Bella had opinions!

Then one day, Bella’s therapist suggested that they move her to a level of several thousand words. Julie wasn’t excited about the idea. Her little girl was doing so well with one hundred words; wouldn’t she be overwhelmed with so many new ones? Her SLP didn’t think so, and the extra words were added to her device. Still worried, Julie wheeled Bella from the hospital, telling her that she now had thousands of words to use. Bella answered with her device, “I should!” At that moment, Julie knew that it would be all right. Bella had needed more words and she was able to say so!

Bella enjoys going to school and likes to tell her parents all about it. One day a dog warden had come to school with a dog from the kennel. Bella loved the dog and used the word “loves” with her talker while he was there. When Julie picked her up, she asked Bella about the dog. She chose these words: “Wished, was, likes, needs, to Christmas.” Julie is pretty sure Bella wants a dog for Christmas, but Bella needs to ask her Dad about that!

Another day, one of Bella’s teachers helped her create a card. They asked her who she would like to give it to. Using her device, she said, “Mom.” As they asked her questions, she provided the words to fill in the blanks. What was she feeling that day? “Happy.” What did she like doing at school? “Draw and color.” Her favorite color? “Red.” Finally, they asked her what she would like to tell her mom. Bella replied, “Love and kind”. When they asked her if she would like to sign the card, she used her device to say, “I need help.” Julie said, “It was the first time I received anything from Bella, and the first time I knew how she felt about me! I love that she is able to express herself and that we can get a glimpse into her personality by the things she says.”

Bella’s parents and the staff at Holmes County Training Center are so excited to see what AAC has done for Bella. It has been life changing! Julie says that while Bella was one of the first in her school to get this type of device, they are hoping that it has opened the doors for others to use AAC devices as well. She also hopes that Bella’s story helps others to understand that even though an individual may have a severe disability, they may still be capable of using a communication device. Just because an individual is non-verbal doesn’t mean they have nothing to say.

One question that families ask the Yoders is, “Who can help us find a device for our child?” Their answer is, “A skilled speech-language pathologist.” SLPs provide that first essential learning foundation for a child, which enables them to use AAC as they mature. Because it takes a different language development process for someone non-verbal, there’s so much groundwork that must be in place before using a device. Understanding their own language must come first, and then the device becomes the tool to express that language. Speech-language pathologists are also the vital link in connecting children with an appropriate AAC device and helping them learn how to use it. Not all SLPs, however, are trained in in this last step and may not fully understand how speech devices can improve a child’s quality of life. Because PRC-Saltillo understands this, they provide representatives all over the nation who offer support to individuals and refer them to professionals who can help.

Bella’s parents have also played an essential part in bringing her to this achievement level by their enthusiasm and perseverance at home. An informal study conducted by Dave Hershberger lends some interesting insight to this aspect. Dave performed the study to determine what factors played into the long-term success of device users. In his research, he looked at all types of disabilities and all types of devices, including equipment from

other companies. Interestingly, there was one constant through each of the successful stories—it was dedicated parents. He says, “You may have the best AAC therapist in the world, but how many hours does your child spend with them? It’s constant interaction and affirmation from their family that keeps them going. This happens with speaking children too. Parents may think if they take their children to a therapist for an hour or two every week it will make up for a lack on their own part. It doesn’t. It is constant interaction that’s a huge part of success.”

Another question many families have is, “What do communication devices cost?” That answer depends on the device and the needed access of the individual. If using PRC-Saltillo’s apps is an adequate option, the cost is quite minimal; however, when a more high-tech access option is necessary, the cost may make a device seem unattainable. The good news is that the devices are covered by health insurance policies since they are regarded as medical devices. Other programs and grants are also in place to help defray the cost of devices for those with no insurance. While the figures may seem high, it’s as Julie says; “You can’t put a price on giving someone a voice. It’s life-changing!”

Recently, Bella and her parents had the opportunity to meet Dave Hershberger and tour PRC-Saltillo’s facility in Wooster. Bella chose the words, “I, we, love,” as they were talking about her device. When she saw where the devices were made and the expansive inventory, she chose the word “wonderful”. On the way home, her parents asked her if there was anything she wished to tell people about her talker. She replied, “Clap greatly!”

Bella’s story is one of thousands, but it lends a glimpse of how the gift of words has impacted each of those lives. Bella and her parents hope her story will inspire others with disabilities and provide them with the same opportunity. Because, after all, every person longs to be understood, and knowing that that dream can become a reality is cause for us all to “clap greatly”!

PRC-Saltillo

(800) 262-1984     //     If you wish to learn more, visit their website at www.prc-saltillo.com