Discussion 2: Family Panel – Diverse Children/Diverse Choices
Tara Downing is a family educator at the Clerc Center, serving as a liaison between the home and the school and working closely with students and their families as well as with teachers and staff.
- Michael Burke, father of Elijah and Christian Burke. Elijah and Christian, age 5, each received a cochlear implant around 2 ½ years of age.
- Hendi Crosby Kowal, mother of Grace Kowal. Grace, now age 6 ½, received her cochlear implant at age 11 months.
- Kristen Meier, mother of Maggie Gray and Audrey Gray. Maggie, age 8, received her cochlear implant when she was 4 ½ years old. Audrey, age 6, received her cochlear implant when she was 2 ½ years old. Her internal device failed and she received a replacement cochlear implant at age 5.
- Stefanie Scott: Mother of Wesley, Willem, and Wyatt Scott. Wesley, age 6 ½, received his first cochlear implant at age 11 months, CI-1re-implantation at 24 months, and CI-2 at 5 1/2. Willem and Wyatt, ages 24 months, have bilateral cochlear implants. They received their first implant at age 12 months and their second implant at age 14 months.
- Tammy Stevenson-Gavins, mother of Destinee Gavins. Destinee, age 9, received her cochlear implant at age 18 months.
- Stephanie Summers, mother of Jonathan Summers. Jonathan, age 8, and his parents (Stephanie and Mark), each received a cochlear implant in October 2002, when Jonathan was two years old.
- Bill Wainscott, father of 5 children; three biological children (Noah- age 12, Grace-age 10, Caleb-age 6) who are hearing, and two deaf children by adoption. John age 11, (adopted at age 3 ½) has bilateral cochlear implants. John received his first implant at age 2 ½ and his second implant at age 11. Maggie, age 4, (adopted at age 3 ½) received a cochlear implant at age 3 ½. Wainscott has also been an interpreter in educational settings for 20 years.
Tara Downing asked each family member to discuss:
- His or her personal journey in choosing a cochlear implant.
- His or her beliefs about the role/benefit of sign language for their child and family.
- Suggestions/recommendations for professionals related to counseling families of children with cochlear implants about the use of sign language.
Hendi Kowal discussed:
- The various reasons their family choose a cochlear implant including:
- The provision of as many options as possible in terms of how Grace would be able to communicate and straddle different communities.
- Support for improving her connectedness with extended family members
- Support for improved opportunities for independence
- Their family decision to initially take advantage of services available in two programs, one that included both sign and spoken language and one that focused primarily on oral language, and then following implantation, to transition to an oral inclusion program where her daughter continues in school.
- Their early decision to sign with their daughter as it seemed like the most natural way to communicate with their deaf child and the benefits to early language stimulation were clear.
- Their family tendency to reduce the use of sign language as Grace developed spoken language competence, maintaining sign use in a variety of situations (i.e., at a distance, in a crowd, at the beach, at night, and in the morning before putting on her implant) and their hope that it will continue to be a part of her life.
Stephanie Summers discussed:
- The difficult decision for their Deaf family to choose an implant for their son. (Stephanie and her husband chose to also get an implant at the same time as their son, and each of Stephanie’s parents already had a cochlear implant). After investigating the technology, they viewed it not as a cure, but an enhancement.
- How they have given their son the opportunity to participate in various school programs using different methodologies to determine the right fit for him. At this time he is in a Cued Speech program for school which is working well for him, though the family does not use Cued Speech at home.
Tammy Stevenson-Gavins discussed:
- How she started using signs with her daughter immediately following diagnosis of a severe to profound loss at around 9 months of age, and also had her daughter wear a hearing aid. (The hearing loss was progressive in nature).
- How she was initially resistant to considering implantation at a young age, but after researching the benefits of early implantation, made the decision to implant.
- Her advice to professionals to give parents the whole spectrum of the what-if’s, and what could possibly happen with a child’s cochlear implant (from the surgery to the outcomes).
- The importance of having her daughter understand that being deaf is a part of her culture—just as much as she is a black child, she is also a deaf child.
- How she first attended an educational program that included both sign and spoken language, how sign language was her first language, how she slowly transitioned to being more comfortable with spoken language, and how she then transitioned to an oral mainstream program for first grade (which has been a good match for her daughter who has a personality that adjusted easily to this setting).
Stephanie Scott discussed:
- Her experience making the decision to get an implant for her older deaf son and then for her twins (all three now have bilateral implants) to give them as many communication access options as possible.
- The family’s decision to place their children in both a program at the school for the deaf (Kendall School) which uses both ASL and spoken language and a private oral inclusion program (The River School) to see how their development in each language progressed.
- Their decision to focus less on signing as their children became more competent with spoken language, yet to continue using basic signs within the home.
- Their decision to use sign to provide an early language foundation and as a bridge to developing spoken language with the hope that they will continue with ASL as a second language.
Michael Burke discussed:
- His caution in investigating and considering a cochlear implant for his twins who were diagnosed as deaf late, at 9 months of age, due to a variety of circumstances and then implanted at age 2 ½.
- The challenge in getting the boys to consistently wear their speech processors, his experience with repeated equipment breakage, their slow progress in developing spoken language through their implants, and how due to the compilation of all circumstances, there was never an option of discontinuing use of ASL.
Bill Wainscott discussed:
- His need as a sign language interpreter to educate and open himself to considering a cochlear implant for his two deaf children who are adopted and now each use a cochlear implant.
- How each child is unique in their language development and both benefit significantly from a cochlear implant in their development of spoken language.
- How use of a cochlear implant has not stopped his family from actively valuing and using sign with their children and how they use both sign and spoken language in the home.
- How sign language has allowed his deaf children to grow cognitively and emotionally, especially as their listening and speaking skills were developing.
- How signing has been important in outside extracurricular activities including church.
- How the family has provided continued opportunities for the kids to use sign language through events such as silent suppers and attendance at deaf camps.
Kristen Meier discussed:
- Why they did not consider a cochlear implant at the earliest possible ages for their girls. With their first child it was still considered experimental (and she did very well with hearing aids), and the second daughter was progressing well in learning and using American Sign Language.
- Their family decision to initially enroll both daughters in the bilingual/bimodal ASL/English program at available at KDES to support development of both languages, even though it was counter to the recommendations of many people. Note: Both girls are now in mainstream programs.
- Their reasons for getting a cochlear implant which included the goals of improving communication with extended family and friends, reducing the need for dependence on interpreters, and opening the doors to all types of communication with the goal of adding spoken language, not dropping ASL.