I WOULD LIKE TO THANK this FDA advisory panel for the opportunity to testify regarding the cochlear implant. My name is Melody James Parton, and I am the parent of an implant child. I am also the Director of Public Education for the League for the Hard of Hearing in New York, a member of the Executive Board of the Parent Section of the Alexander Graham Bell Association for the Deaf, a member of the Board of Directors of the New York Chapter of this organization, and a member of the Cochlear Implant Club International.

I am also here to represent the hundreds of cochlear implant families we have met, shared concerns, as well as achievements and joys with, over the last ten years. Strangers at the beginning, we parents quickly find our common ground: our children are deaf. We wrestle with the implant decision. Once made, we continue to face challenges regarding services, school options, and their well being each step of the way.

This network of implant families is now extensive. We meet at conferences, through cyberspace, print, and phone. All of the families I know, and speak with regularly, would tell you the implant works for their child, that it is an effective tool helping their child. It does not solve, fix, or end the challenges of raising one of our children.

Our daughter Caitlin contracted meningitis at the age of 22 months. She emerged with a profound hearing loss. We chose for Caitlin to receive the Nucleus 22 channel cochlear implant eight months later. At the time of her operation in January 1988, the implant was still under "investigative status" for children with the Food and Drug Administration. Caitlin was one of the first toddlers in the world to pioneer the device. We are glad to have this opportunity to thank you for allowing the implant option years ago. Some of her abilities are a result of being implanted so young. For our child, our family, and the others we know, the implant has made a world of difference. Each external upgrade has brought improvements, and Caitlin's ability to use this tool jut keeps getting better. Those who propagandize that parents like us make this choice cavalierly, or for our own convenience, quite simply: just don't know us.

If, as a parent, you look forward to sharing life with your child, and you believe your child will benefit from who you are, your vision and experiences, and that you will mutually benefit from this close bond, then you need to share a common language. "A different language is a different vision of life." For us, it was common sense to try our native language first. If it hadn't worked, we would have moved to a different option.

Another significant point leading us to an oral/aural approach, and then to the implant are the low test scores in reading and language skills of deaf students educated in non-oral programs, where ASL is the mode of communication. The norm, for these deaf high school graduates, is to read on a fourth grade level. American Sign Language is beautiful, but its syntax is very different from English, and it is without a written form. These facts present obstacles to becoming fluent in English.

Education is the great equalizer in a society, and the most important gift to give a child. In our country, English is the language of the majority. Reading, writing and speaking it well, mean access to information and possibilities; access to more fulfilling jobs, and a positive self image that is based on accomplishments, contributions, and participation. The ability to maneuver and feel comfortable in the dominant culture, and to possess excellent communication skills if possible, are extremely helpful in one's life.

We wanted these opportunities for our child. We believed to not try to teach Caitlin English first, to wait till "later," was to risk sentencing her to functional illiteracy. It is well recognized the window of opportunity to develop any language is the first five years of a child's life.

Caitlin is happy, tenacious, and enjoys life. She has friends, both hearing and deaf, and is fully mainstreamed in an academically challenging school. She gets support services funded through the Board of Education. Her language and reading skills are three years above the norm for her age level. She studies piano, flute, French, and sings in the school chorus. Caitlin is a member of National Dance Institute and last weekend performed with over a thousand kids in Central Park. She knows how to fingerspell and some ASL. Let me assure you: Caitlin is in there participating, learning, and exploring many different ideas and ways to express herself.

We have a close, extended family. We discuss, argue and laugh together. Caitlin has the ability to form her own opinions and speak her mind. She can disagree with her parents and sometimes does. So far we have the tools to navigate our differences. The implant, our shared language, and our love form the bridge.

For us, deafness threatened something we value: freedom. If you do your job well as parents, your child grows up to be a happy adult, free and capable of choosing for herself from the broadest possible spectrum of life's adventures. Love, self esteem, education, curiosity, community, independence, openness to other people, cultures, and the world — possessing a passion for life — were the dreams we discovered we valued and wanted for our child.

Most of us parents, the 90% who are hearing, face awesome questions in the initial days: where do we start? What world of the world will my child feel part of, comfortable and at home in? "What can I do to give my child the best chance at a happy, productive life?" Whatever our choices, there are no guarantees. But making our child "just like us" was never the issue.

Some of the best advice we got came from an oral-deaf otolaryngologist: "Deafness is something that happens to a family, not just the child." Deafness affects communication which is integral to healthy family life. The family is recognized as the initial place, the fragile equilibrium system, that gets our new little people on firm foundation. Some don't get this foundation, they are injured and play "catch up" their entire lives. We know deaf children have the same needs as all children: to love and be loved, cherished, supported, responsibly cared for, well educated, and to learn to respect themselves and others. Implant families don't see our children as deprived of cultural identity. Those that argue hearing parents can't and shouldn't parent their deaf children, because they can't be or won't find proper role models, baffle us. We know they have not spent time with our children.

We believe the implant was our responsibility and our decision to make as Caitlin's parents. We will answer to her. No one was going to represent Caitlin's individual needs, abilities, and interests the way we would. Our course has been to nurture and help her become ALL she can be. The extraordinary professional and community support we receive from the League for the Hard of Hearing's rehabilitation program with its high expectations, careful monitoring, guidance, and family centered philosophy, as well as the A.G. Bell Association with its education, advocacy, and scholarship aid programs, and Cochlear Implant Club International's adult role models and generous advice have been essential to our family's well being. These organizations, the implant center at New York University Medical Center, her school, and her family form Caitlin's team. Caitlin is an example of what a "village" can do for a child when we work together.

Caitlin has been labeled an "anomaly" by the implant opposition. Her accomplishments and the TRUTH of her have been marginalized. I am here today to lasso her back from that ostracized place. Shame on those who label and dismiss our implant children and families who have bravely stood up to dialogue and speak about this tool. Our kids are not "solo stars that pro- implant people trot out to mislead and recklessly give false hope to other parents." Why would I do that to another parent? To another child? It would be cruel. Caitlin is special, all kids are, and she's mine, but she is not an anomaly. Labeling people and suppressing information have never been good strategy! This spreading of false information serves a political agenda, not the children.

It was never our desire to have our child rejected by the Deaf Community because she uses an implant. But parents like us aren't imagining what these implant kids are doing. We see it, hear it, and live it. I can tell you from my work at the League, and international conferences, implant kids run, play, laugh, and have friends. They are doing amazing things: jabbering away, talking non-stop, playing musical instruments, boasting about their undefeated baseball team, winning spelling bees, performing on or above grade level, participating in the life of their school, community and family. The children benefiting from an aural/oral program are doing particularly well.

Deaf children cannot be caught in the middle of this ideological debate. We all need to create a climate that recognizes there is no one answer or correct way. This means accurate information, quality options, improved technology, and parent advocacy training. Programs to help children maximize the use of this tool must be ensured. Funding and policies that respect and enable choices to work must be put in place everywhere.

Caitlin and the children like her have a miraculous tool to use. My daughter can turn her implant off, and be in a silent world. She can learn sign language as well as hearing interpreters can. She already has a remarkable command of English. Caitlin has choices. She can go anywhere in the world and speak for herself.

© Copyright 1997 Melody James Parton