June 17, 2008 Features

Crossing Boundaries

Accessibility for Children in Rural Areas

From the time of his birth, my son Kaid'dub Pavel was destined to become a spiritual and cultural leader for the Skokomish Nation of Washington State. In the Twana and Hawaiian languages his full ancestral name—CHiXapkaid'dub Kai—means "the leader from the top of the mountains to the depths of the ocean." Kaid'dub has been guided on this path by his father, CHiXapkaid (D. Michael Pavel), a Skokomish tradition-bearer.

Kaid'dub began living into his namesake when he was diagnosed with Pendred syndrome, a form of progressive hearing loss, around age 2. We suspected something was amiss with Kaid'dub at his 18-month-old check-up.

The pediatrician asked if Kaid'dub had between 20 and 30 words. I was unable to think of even five words that my son was using. The doctor said that Kaid'dub probably had those words and that we just didn't understand him.

Six months later, Kaid'dub saw his regular pediatrician, who asked if his hearing had been tested. At age 2½, Kaid'dub was diagnosed with bilateral severe-to-profound hearing loss. After a blood test we learned it was Pendred syndrome. As a parent, how would I deal with hearing loss and the pain of finding out that my child was somehow "less than"? When he was born, I counted his toes and fingers. At that time there was no newborn hearing screening so his hearing was not checked. Thus, the journey began.

Finding Services

We took Kaid'dub to an urban location where he was fitted with bilateral hearing aids. However, in our rural, remote home we didn't know where to find educational services for help in his journey toward becoming a leader of the Skokomish people. The Internet was of no help; in fact, the variety of communication options made it seem confusing and overwhelming. Local service providers were unprepared to guide us. We knew that we had lost critical language-learning time and were desperate for guidance and information.

At the Children's Hospital and Regional Medical Center in Seattle, we found Ann Curry, a teacher of the Deaf and program coordinator of Family Conversations. Curry drove almost 200 miles round trip once a week to serve Kaid'dub and my family. She was what I needed—someone to walk us through options, to talk about hearing loss, and to discuss the future in a way that was both empathetic and empowering.

At age 3 Kaid'dub became eligible for Head Start and school district services. His needs brought the local school district and the tribal Head Start together to develop the first Deaf education team in the area. The team included tribal education staff, a sign language interpreter, an educational audiologist, a Deaf educator, and a speech-language pathologist. Some of these professionals continue to serve other children who are Deaf in that community.

After moving to another rural area, we began another search for services. Although Kaid'dub was communicating with both sign language and auditory-oral skills, he showed a preference for auditory-oral channels. We needed provision of a spectrum of communication options so Kaid'dub could reach his full potential.

A Blanket Leads to a Symposium

Meanwhile I was learning the art of Coast Salish weaving from a master weaver, subiyay (Bruce Miller). An art form once on the verge of extinction, Coast Salish weaving is seen as a powerful means to revitalize the history and identity of its people. After subiyay's passing, I was left with the responsibility of resurrecting the art, spirit, and science of traditional Salish weaving.

Over the past 11 years, I have taught more than 500 students, who now are skilled in weaving blankets, shawls, and ceremonial regalia. Coast Salish weavings are finding their way into homes across the Northwest and into personal and museum collections across the United States. Important life events, such as births, naming ceremonies, and weddings, are frequently marked with gifts of traditionally woven items. A Coast Salish weaving renaissance is underway.

For me, perhaps the greatest moment of this renaissance is represented in the blanket I wove titled "du'kWXaXa't3w3l—Sacred Change for Each Other." The blanket is the first of its kind in more than 100 years. It took 12 years for my husband CHiXapkaid and extended family members to gather the tufts of wild goat's wool from the mountainsides to make the yarn. It took six more months for me to weave it together.

The Seattle Art Museum purchased the blanket from our family; we used the sale profits as the primary funding source for a symposium, "Possibilities for Children who are Deaf and Hard of Hearing," held at Washington State University in Pullman Oct. 4-5, 2007. Thus, the blanket served its purpose of bringing "Sacred Change for Each Other."

Susan Pavel, (sa'hLa mitSa) is the mother of Kaid'dub (age 6) and Akea (age 4) Pavel. She has taken a leadership role in resurrecting the Coast Salish weaving tradition as a master weaver and teacher.

cite as: Pavel, S. (2008, June 17). Crossing Boundaries : Accessibility for Children in Rural Areas. The ASHA Leader.

Our Circle Widens

by Ella Inglebret, sa'hLa mitSa (Susan Pavel), and CHiXapkaid (D. Michael Pavel)

Before planning the symposium "Possibilities for Children who are Deaf and Hard of Hearing," we formed a partnership with faculty from the Department of Speech and Hearing Sciences at Washington State University in Pullman.

Together, we could see a variety of possibilities for children who are Deaf and hard of hearing. We saw the need to link resources on multiple levels—much like the weaving of a Coast Salish blanket—bringing university faculty and students together with public school personnel, crossing our nearby state line between Washington and Idaho. We envisioned crossing disciplinary boundaries to share expertise, validating the full spectrum of communication options that exist for children who are Deaf and hard of hearing, and crossing the boundaries of different cultures—Deaf, hearing, indigenous, and schools.

We set out to develop a framework to capitalize on the existing strengths of our regional personnel, students, and families, while filling in gaps. The symposium's tone was set by first listening to parents and students, who were communicating in various modes including auditory-oral systems, total communication, and American Sign Language. They shared their perspectives on what worked and what didn't.

Symposium participants brought strength as many represented teams who would return to their schools to work together as administrators, regular and special education teachers, speech-language pathologists, audiologists, teachers of the Deaf, sign language interpreters, and paraprofessionals. In returning to their work settings, these professionals could weave these diverse areas of expertise together to create stronger systems of service delivery.

To extend our understanding of new possibilities, we brought in an expert on auditory skill development, as well as professionals from both Washington and Idaho who were implementing school programs that allowed access to a full spectrum of communication modes. We heard stories of crossing boundaries—between the Deaf world and the hearing world—and the great challenges involved. We gained a better understanding of the paradigm shift necessary to truly accept that various communication approaches could co-exist.

Where do we go from here? Building on the positive response to our first symposium, we are raising funds and planning for the second symposium in fall 2008. We are following through on connections initiated between public school and university faculty and students. Our university students are embarking on new projects, including the development of culturally based educational materials and multimedia learning tools that can be used in public school classrooms. In addition, university students are engaged in new types of practicum experiences in schools.

Similar to the act of weaving, we are bringing resources together to create new possibilities, not only for children who are Deaf and hard of hearing in our community, but for all who have the privilege of being involved in their lives.

What have been the outcomes for 6-year-old Kaid'dub? We now see a young boy who has caught up to or exceeded most expectations for children in his regular first-grade classroom. Kaid'dub also continues to move forward in more challenging areas, such as interacting with his peers and producing particular speech sounds. He is an avid reader for both pleasure and school assignments. Kaid'dub shows great sensitivity, as he perceives the world around him on multiple levels—emotionally, spiritually, and through art. Kaid'dub is growing into his namesake—he now has words to talk about the path to becoming a leader for the Skokomish people.

Ella Inglebret is an assistant professor in the Department of Speech and Hearing Sciences at Washington State University. Contact her at einglebret@wsu.edu.

CHiXapkaid (D. Michael Pavel) is Skokomish and the father of Kaid'dub Pavel.



  

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