Something to Say Children who use AAC devices put on a play at a family camp to show the world that communicating is more than talking. Features
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Features  |   July 01, 2015
Something to Say
Author Notes
  • Anne P. Bedwinek, PhD, CCC-SLP, is adjunct associate professor in the Department of Communication Science and Disorders at the University of Missouri. She serves on the coordinating committee of ASHA Special Interest Group 5, Speech Science and Orofacial Disorders. bedwineka@health.missouri.edu
    Anne P. Bedwinek, PhD, CCC-SLP, is adjunct associate professor in the Department of Communication Science and Disorders at the University of Missouri. She serves on the coordinating committee of ASHA Special Interest Group 5, Speech Science and Orofacial Disorders. bedwineka@health.missouri.edu×
  • Gale Rice, PhD, CCC-SLP, professor and dean in the College of Education and Applied Health Professions at Fontbonne University, contributed to this article.
    Gale Rice, PhD, CCC-SLP, professor and dean in the College of Education and Applied Health Professions at Fontbonne University, contributed to this article.×
Article Information
Augmentative & Alternative Communication / Features
Features   |   July 01, 2015
Something to Say
The ASHA Leader, July 2015, Vol. 20, 44-50. doi:10.1044/leader.FTR1.20072015.44
The ASHA Leader, July 2015, Vol. 20, 44-50. doi:10.1044/leader.FTR1.20072015.44
Chris’ dad is eager to share his experience of being father to a child with special needs. “It’s kind of like planning a trip to Italy but when the plane lands, you’re in Holland.” We sit together at the Capellupo Family Augmentative and Alternative Communication Weekend Theatre Camp at Fontbonne University in St. Louis.
“You want to see Italy, the home of your ancestors,” Chris’ dad continues. “You get guide books, learn the language, buy trip insurance. You get on the plane. When it lands, they say, ‘Welcome to Holland.’” With tears welling in his eyes, he explains, “Parenting a child with special needs is different than what you thought it would be. There’s an ongoing mourning process. You assume your child will grow up, date, go to college and get married. You might as well rip up that plan. Yet Chris enriches my life every day, and I’m grateful to have him as my child.”
Chris’ parents adopted him right after his birth, and within a year he was diagnosed with cerebral palsy. He and his parents have since traversed years of therapy and surgery.
Chris, now 17, is able to walk, but as his father says, “He is completely nonverbal. He communicates with sounds, about four to five signs, and has advanced through several augmentative devices. Chris is a real whiz when it comes to the navigation of his current device.” A multi-modality communicator, the device allows Chris to generate spontaneous language, access the Internet and use a cellphone.

“Parenting a child with special needs is different than what you thought it would be. There’s an ongoing mourning process. You assume your child will grow up, date, go to college and get married. You might as well rip up that plan. Yet Chris enriches my life every day, and I’m grateful to have him as my child.”

Chris lights up when he walks in the room for lunch and sees his dad, who is also participating in this camp for students whose disabilities require them to use augmentative and alternative communication (AAC) devices. Camp staffers (graduate students from Fontbonne University) help Chris wipe drool from his wide smile. He is tall, handsome and a prankster, switching drinking glasses while his dad isn’t watching.
Chris is here along with 15 other campers to rehearse for and ultimately put on a comedic play using AAC. The goal is to benefit campers but also their family members, who participate: Parents attend educational sessions, network and exchange ideas, and siblings take roles in the play. (The camp receives much of its funding from camp donors and supporters John and Mary Ann Capellupo. Families pay nothing.)
I ask Chris, “What do you think of this weekend?” He grins and phonates with a positive upward prosody. He points to, looks at and reaches for each of his grad-student helpers and smiles.
Setting the scene
Campers arrive late Friday afternoon at the serene, ivy-covered campus of Fontbonne University. Parents, kids, siblings and sometimes dogs gather with wheelchairs, ventilators, whatever equipment is needed. Icebreakers and conversation begin in the dining hall. “On Friday, it’s pretty chaotic, but by Saturday things calm down and by Sunday, no one wants to leave,” says Gale Rice, professor and dean in Fontbonne’s College of Education and Allied Health Professions.
Along with other faculty in Fontbonne’s Department of Communication Disorders and Deaf Education, Rice founded the camp in 2006 and is the force behind it. Her vision is to provide new opportunities to AAC users and their families.
“My child got to have a part in a play. That would never happen at her school,” says the mom of another camper, Jenny. Chris’ dad adds, “This morning, I found out about a conference in my hometown on ‘transitioning’ out of high school. I didn’t even know the conference existed.”
Siblings are actively involved. Eleven-year-old Sam is the brother of Lily, who has Rett syndrome and uses eye-gaze to activate her AAC device. “I really like coming,” Sam says. “They give you a role in the play, and then if you want to add something, it’s OK. This time we got to make a cape out of duct tape and markers. I like doing the play. Because of this, I did a play at sleep-away camp. Dr. Lewis [playwright and director Richard Lewis] encouraged me to try out.”
Jenny is a camper who has Leigh’s disease, a neurodegenerative condition that results in dysarthria. Her sister Nikki, a college student, is here to watch the play. She was once a camper and says, “Although my sister and I are very close and my parents never made me feel left out, the camp helped when I was younger, to meet other kids who are in the same situation. None of my friends have gone through the same thing as I have.”

“Although my sister and I are very close and my parents never made me feel left out, the camp helped when I was younger, to meet other kids who are in the same situation. None of my friends have gone through the same thing as I have.”

Siblings at the camp have their own activities, as well as lines to learn and costumes to create. Parents gather in formal groups to hear lectures by guest speakers on topics ranging from special education law to nutrition to family issues. They share experiences and, sometimes, tears. Jenny’s mom says, “This is a safe place.”
Learning the lines
On Saturday morning, with the help of graduate students, campers prepare their lines, program the lines into their AAC devices and plan costumes. The partnering of Fontbonne graduate students with campers benefits the students just as much as it does the campers, Rice says. Student Julia Douglas, who works with Chris, says Chris and his dad have taught her what’s missing from her AAC textbooks.
“At camp we see day-to-day life, and the ins and outs and the waking up at 4 a.m. to change diapers on a teenager,” she says. “We all take families into consideration when we work with kids, but what these families go through is a whole different thing that needs to be taught and learned before seeing kids in the field.”
Another grad student, Carolyn Albrecht, notes the camp’s emphasis on real-world use of AAC devices. “For example, how to teach your client to advocate for himself if McDonald’s gives him the wrong order,” she says. “Also, the camp brings home the need for being sensitive and in tune with the needs of patients and families, part of evidence-based practice. These kids may be exhausted and parents burned out.”

“At camp we see day-to-day life, and the ins and outs and the waking up at 4 a.m. to change diapers on a teenager. We all take families into consideration when we work with kids, but what these families go through is a whole different thing that needs to be taught and learned before seeing kids in the field.”

For Loretta Dunkmann, another graduate student who is a parent of twins receiving speech-language treatment, the camp illustrates the importance of setting high expectations for AAC users. “On Sunday, the campers always rise to the occasion,” she says. “In addition, we learn to recognize parents as a source of information and to collaborate with them.”
Camp founder Rice points to the weekend’s focus on enabling campers to express themselves. “While these children have varying abilities, they all have something to say,” she says. “That is why AAC systems are so important. I have a quote [from Rosemary Crossley] hanging on my office door that says, ‘Not being able to speak is not the same as not having anything to say.’”
Image Not Available

In “The League of Not-So-Super Heroes,” Evil Dr. Garbanzo (far right) wreaks havoc as he schemes to find the recipe for the world’s best chicken-salad sandwich.

Curtain’s up
By Sunday, it’s performance time. Actors are fitted in costumes and makeup. A large audience of families and friends gathers in the theater with cameras and camcorders. They rarely see their children with special needs on stage, in a play. The stage goes dark and the production begins.
Written and directed by communication disorders and deaf education faculty member Lewis and produced by department chair Carmen Russell, the play, “The League of Not-So-Super Heroes,” is a comedy about Evil Dr. Garbanzo, who kidnaps Cumberbatch the dog as part of a scheme to find the recipe for the world’s best chicken-salad sandwich. Lily’s sibling Sam plays Evil Dr. Garbanzo and opens the performance.

By Sunday, it’s performance time. Actors are fitted in costumes and makeup. A large audience of families and friends gathers in the theater with cameras and camcorders. They rarely see their children with special needs on stage, in a play. The stage goes dark and the production begins.

One by one, characters appear on stage. Remote Control Girl is played by Jenny, who uses eye-gaze technology. Dr. Spoons, a boy with Down syndrome and childhood apraxia of speech, walks on stage wearing a costume covered with spoons. The Growler, a boy with attention-deficit hyperactivity disorder and childhood apraxia of speech, growls, then uses his talker to say his lines. The Duster, the sibling of a child with autism spectrum disorder, arrives with a feather duster, dusting people as well as furniture.
Charmer Chris stands tall with the help of his grad students, smiles his engaging smile, and laughs along with his lines. Following the production, Rice—together with university president Michael Pressimone and assisted by camp mentor, Jen’nai Young, who herself uses AAC—presents the actors with “Academy Awards.” After that, pictures are snapped, and the weekend wraps up with the cast party.
Camp donor and supporter John Capellupo never misses a performance. “I cry at the end of every play,” he says. “I can’t help it.”
This article describes the July 2014 session of the Capellupo Family Augmentative and Alternative Communication Weekend Theatre Camp. The camp is also taking place this summer; watch a video at bit.ly/aac-camp.
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July 21, 2015
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