Where am I?
Finding a Voice
How One Play Makes a World of Difference
By Elizabeth Hise Brennan
Featured in the March 2011 issue of Tableaux magazine.
Performing a play is a standard rite of passage for most grade-schoolers. But for children with speech or communication disorders, this childhood experience often isn’t even an option.
Enter Fontbonne University’s biannual Augmentative and Alternative Communication Weekend Family Theater Camp, a three-day event that gives these children the opportunity to learn lines, wear costumes, get into character and generally ham it up.
The camp was the brainchild of Fontbonne’s department of communication disorders and deaf education (CDDE), a group of passionate professionals who have organized and staffed two or three camps each year for four years running.
Each camp hosts eight to nine families with children who use augmentative or alternative devices to help them communicate. It is entirely donor funded — families pay for nothing — and for many parents, it’s a chance to see their children shine.
“This is our fourth year for the camp,” said Jeanne MacAinsh, whose 9-year-old son, Jacob, was born with spina bifida, a birth defect caused when the spinal column doesn’t close completely, as well as apraxia, a disorder caused by damage to the brain. He has a speaking vocabulary of about 5-10 words, but otherwise, he uses hand gestures, facial expressions, body movements and an assistive device to convey his thoughts and feelings.
He gives the camp two thumbs up.
“Jacob would otherwise never have the opportunity to be in a play,” MacAinsh said. “He’s a ham, and he likes attention. He has more confidence than most people I know.”
But there’s far more to the camp than theatrical performance. It’s not simply for the children. It’s for their families, too.
“Camp gives parents the opportunity to compare notes, gain from each others’ experiences, and support one another,”said Dr. Gale Rice, professor and chair of Fontbonne’s CDDE department and the camp director. “Siblings have the chance to meet other children who have brothers and sisters with disabilities and other children who use communication devices. It is wonderful to see this community develop over the course of the weekend.”
Families arrive on Friday night, and the camp kicks off with an evening of icebreakers and conversation. Each child with a special need is paired with a Fontbonne graduate student in speechlanguage pathology.
“The whole staff is fantastic,” MacAinsh said. “The grad students are fantastic. You don’t even realize they’re students — I’m astounded at their level of professionalism.”
Saturday morning, children and parents are separated while the aspiring actors learn their lines. Parents have the opportunity to attend workshops, listen to guest speakers, and learn more about topics like special education law, nutrition, community resources and family issues. Hearing loss and communication disorders sometimes stem from physical disabilities or special needs, so these families tend to deal with complex issues most people might not understand.
“You get a lot of advice,” said Amy Swartz, the mother of 10-year-old Laney, whose family travels from Conway, Ark., to attend the camp.
“With each child and family, they bring new knowledge of how to help your child, how to communicate better with the people who help her, and how to be a better advocate for her.”
Laney was born with a cleft lip and palate, as well as severe midline deformity, so she can’t physically speak. This doesn’t impact her incredible brain, however — she earns all As and Bs in her fourth grade class. For a long time, she used sign language to communicate, but so few people knew and understood it, Swartz said, that she needed an alternative mode of communication.
“Our campers all have difficulty expressing themselves verbally for any number of reasons,” Rice explained.
“While they have varying abilities, they all have something to say, and that is why augmentative and alternative communication systems are so important. I have a quote hanging on my office door that conveys this: ‘Not being able to speak is not the same as not having anything to say.’”
A speech therapist at St. John’s Mercy Hospital connected Laney’s family with the CDDE staff at Fontbonne. After an evaluation with Rice in 2009, Laney began using an electronic augmentative communication device.
“It’s fun to see her use it,” her mother said. “She caught on quickly. I think she knows more about it than the people who sell them.”
At school, Laney sometimes has trouble communicating with other students. But at camp, Swartz said, she’s with children who understand her.
“At camp, she and Jacob played hide and seek. They have a bond, and they communicate in their own way, with or without their communication devices. It’s awesome to see them all interact — Laney really blossoms.”
On Sunday morning, children and parents come together again in the Lewis Room of Fontbonne’s Taylor Library. Families and guests are invited to watch as the actors, assisted by aids, perform an original production written by Dr. Richard Lewis, associate professor of communication disorders and deaf education. Typically, the plays are full of quirky characters and witty one-liners.
This year, “The Muskrat of Mudville Manner” featured Jacob as a professor with a missing muskrat, his older brothers, Matthew and Brendan, as the chief of police and his deputy, and Laney as Princess Buttercup. Together, eight non-verbal campers and seven of their siblings solved the mystery of Mudville Manor. And after the closing curtain, each performer received a trophy honoring the talents he or she displayed throughout the weekend, as well as a DVD of the production and awards ceremony, and a photo slideshow of the camp’s activities.
“Every year, I’m more and more amazed at what they do,” said Swartz, referring to the devoted CDDE faculty and staff members, including Rice; Lewis; Dr. Carmen Russell, the play’s producer and an associate professor in the CDDE department; Cheryl Burrus, the coordinator for the Eardley Family Clinic for Speech, Language and Hearing; and Jan Johnson, the CDDE office manager. Each camp weekend comes to fruition through immeasurable hours of planning and organizing. But the faculty, staff and students love what they do, and the families express their profound gratitude, coming back year after year.
MacAinsh described the staff as almost superhuman: “They’re regular people who do an extraordinary thing.”
Photos by Jerry Naunheim.