Articles From Winter '97 IMPACT Newsletter

COCHLEAR IMPLANTS : SPECIAL EDITION

Cochlear implants. Two clinical words which carry a lot of emotional baggage. When cochlear implants were approved by the PDA for children in June 1990, there were many reports and news stories about the latest "miracle cure" for deaf­ness. Children and adults were profiled, some as they went through the process of surgery and initial mapping, where they would experience sound with their implants for the first time. News stories reported stunning successes. In April, 1993 the National Association of the Deaf pub­lished a position paper which "...deplores the decision (of approval of cochlear implants in children) of the Food and Drug Administration..." (see page 6 for a full reprint).

Parents who are considering a cochlear im­plant for their child are met with a dizzying array of information and misinformation. Unfortu­nately, much of the information is based on emotion, not facts. Surgeons who are trained to cure problems, should not be the only source of information; nor are well meaning, but some­times misinformed, members of the deaf com­munity.

The decision to have a child implanted is not taken lightly. It is not a magic bullet that instantly transforms a deaf child into a hearing child. Despite rigorous screening prior to the surgery, final results vary greatly. It is expensive and time consuming. It is a surgical procedure, performed under general anesthesia, with the inherent risks of any such surgery. Following the surgery, the parent and patient need a real commitment to the aural / oral training and rehabilitation necessary in order to make full use of the implant.

Cochlear implants have been shown to im­prove speech reading and speech production skills in children. They provide the ability to hear environmental sounds, which some profoundly deaf children are unable to hear even with the most powerful hearing aids. Some children have been so successful, they are able to be main-streamed full time, use the telephone, and fully function in the hearing world. Cochlear implants provide additional opportunities, they do not deny a child's deafness.

If you, as a parent, are considering a cochlear implant for your child, it is important you get as many facts, from as many sources as possible, prior to making a decision. It is a decision that will have a profound affect not only on your child, but your entire family as well. Talk to your doctor, audiologist and implant center. Speak to other parents of children with implants. Talk to your child regarding their feelings about the implant (if they are old enough to understand). Read as much as possible. Take into consid­eration the school setting of your child, your families needs and the concerns of the deaf community. Then, when all is said and done, remember the decision is yours, and yours alone, as parents of your child. You, as parents, have the right and the obligation to do what you have decided is best for your child and your family.

ONE PARENT'S STORY

Our son received the 3M single channel cochlear implant in January, 1984 at the age of 3 years, 3 months. He was implanted subsequent to losing his hearing to Spinal Meningitis at the age of fourteen months.

Our expectations at the time of the surgery and sub­sequent activation were not high. We knew that the implant would not restore any type of "normal" hearing. Our hope was to be able to provide him with "some" auditory in­formation. We felt that if he could at least hear and learn to identify warning sounds, such as a car horn, smoke alarm or even someone yelling, we would have peace of mind.

As it turned out the benefits were much more than we had hoped. Our son is now 16 years old and we feel the benefits of the implant are:

1. He can now identify many environmental sounds himself and is alerted to all sounds within the normal hearing range.

2. Although sign language is our primary mode of communication, the implant helps him tremendously with his speech reading ability due to the auditory cues he re­ceives.

3. His speech intelligibility is significantly better as compared to peers with the same hearing loss and only hearing aid use.

4. On a personal note, I feel it has reduced the frus­tration level for us (his family) as we are able to get his attention by calling his name whether he is in the same room, in another part of the house, or even outside across the street (providing there is no competing background noise).

Our son wore his processor consistently up through elementary school where he attended classes in the total communication program. When he started Jr. High School he transferred to CSDR (California School for the Deaf, Riverside). He is now in the tenth grade. He does not wear his processor at school. He says the environment is too noisy to receive much benefit. I also feel as a parent that the fact it is "different" is at issue also. However, he does put it on and wears it when he is at home and also to work. He has a part- time job as a courtesy clerk in a grocery store.

He seems comfortable going back and forth between the more "deaf environment of school and the more "hearing" environment of home and work. It seems that in the "hearing" environment he depends on the implant, feels more secure with it on. On the other hand while at school or out with his peers he is more comfortable without it.

Some final thoughts...If we could go back and make the decision to implant over again, we would not hesitate to go ahead with it. We feel the benefits have been tremendous. What our son does with the implant when he becomes an adult and goes out on his own will, of course, be his de­cision. We will support that decision whatever it may be.

Debra Moss   San Diego, CA

WHAT SHOULD PARENTS KNOW?

In May 1995, the National Institutes of Health held a Consensus Development Conference "Cochlear Implants in Adults and Children" and issued a report with their findings. Following is a summary of the findings related to children and areas of importance for parents of deaf children to consider when investigating the option of a cochlear implant for their child. There is little government monitoring or control over the implant process. Doctors who obtain the necessary training are al­lowed to perform a cochlear implant. That does not necessarily mean that they have an adequate as­sessment or post-implant follow-up program in place. Parents need to be well informed and re­search this area prior to making this important de­cision.

SUMMARY

INTRODUCTION

Cochlear implants are now firmly established as effective options in the habilitation and rehabilitation of individuals with profound hearing impairment. Worldwide, more than 12,000 people have attained some degree of sound perception with cochlear im­plants, and the multichannel cochlear implant has be­come a widely accepted auditory prosthesis for both adults and children. The vast majority of deaf adults with cochlear implants derive substantial benefit when the implant is used in conjunction with speechreading, and some are able to communicate by telephone. Benefits have also been observed in children, including those who lost their hearing prelingually; moreover, there is evidence that the benefits derived improve with continued use. New speech-sound processing tech­niques continue to improve the effectiveness of cochlear implants, increasing user performance beyond previous levels.

Implantation of individuals with multiple disabili­ties, the elderly, and children, particularly children who are prelingually deaf, engenders special questions. Longitudinal studies are providing information on the development of auditory speech perception and pro­duction and language skills in deaf children with a cochlear implant. What educational setting is best for the development of speech and language in these children? Are cochlear implants efficacious in children who are prelingually deaf?

WHAT ARE THE BENEFITS AND LIMITATIONS OF COCHLEAR IMPLANTATION?

Improvements in the speech perception and speech production of children following cochlear implantation are often reported as primary benefits. Variability across children is substantial. Factors such as age of onset, age of implantation, the nature and intensity of rehabilitation, and mode of communication contribute to this variability. Using tests commonly applied to children and adults with hearing impairments, percep­tual performance increases on average with each suc­ceeding year post implantation. Shortly after implan­tation, performance may be broadly comparable to that of some children with hearing aids and over time may improve to match that of children who are highly successful hearing aid users. Children implanted at younger ages are on average more accurate in their production of consonants, vowels, intonation, and rhythm. Speech produced by children with implants is more accurate than speech produced by children with comparable hearing losses using vibrotactile devices or hearing aids. One year after implantation, speech in­telligibility is twice that typically reported for children with profound hearing impairments and continues to improve. Oral-auditory communication training ap­pears to result in substantially greater speech intelligibility than manually based total communication.

The language outcomes in children with cochlear implants have received less attention. Reports involving small numbers of children suggest that implantation in conjunction with education and habilitation leads to advances in oral language acquisition. Data on cog­nitive and academic development following implan­tation is not yet available. The nature and pace of language acquisition may be influenced by the age of onset, age at implantation, nature and intensity of ha­bilitation, and mode of communication

Oral language development in deaf children, in­cluding those with cochlear implants, remains a slow, training-intensive process and results typically are de­layed in comparison with normally hearing peers.

PSYCHOLOGIC AND SOCIAL ISSUES

The assessment of psychological impact on chil­dren with implants lags behind that for the adult population, in part, because psychological outcome is a factor of audiological benefit, which is realized more

slowly in children. Additionally, such assessment must consider the child's family setting. Because language acquisition is closely associated with iden­tity, social development, and social integration, the impact of implantation on a child's development in these areas deserves more study to produce useful indicators that can bear upon the parental decision making processes.

REHABILITATION AND EDUCATIONAL ISSUES

Although a cochlear implant can provide dramatic augmentation of the auditory information perceived by deaf children and adults, training and educational intervention are fundamental for optimal postimplant benefit. Access to postimplant rehabilitation in­volving professionals familiar with cochlear implants must be provided to ensure successful outcomes for implant recipients.

Rehabilitation efforts must be tailored to meet individual needs and protocols should be developed toreflect therapies effective for various types of indi­viduals receiving implants. Therapeutic intervention with prelingually deaf adults may differ significantly in both time and content from that with postlingually deaf recipients.

Pediatric cochlear implantation requires a mul-tidisciplinary team composed of physicians, audi-ologists, speech language pathologists, rehabilitation specialists, and educators familiar with deafness and cochlear implants. These professionals must work together in a long-term relationship to support the child's auditory and oral development. Although the effects of communication mode in implantation ha-bilitation have not been sufficiently documented, it is clear that the educational programs for children with cochlear implants must include auditory and speech instruction using the auditory information offered by the implant.

CHILDREN

AUDIOLOGIC CRITERIA

Children age 2 years and older with profound (>90 dBHL) sensorineural hearing loss bilaterally and minimal speech perception under the best aided conditions may be considered for cochlear implanta­tion. In the young child, auditory brainstem response, stapedial reflex testing and otoacoustic emission testing may be useful when combined with auditory behavioral responses to determine hearing status. Prior to implantation, a trial period with appropriate am­plification combined with intensive auditory training should be attempted to ensure that maximal benefit is achieved. When the validity of behavioral test results is compromised by maturational factors, the above criteria should be applied in the most stringent manner (i.e. worse hearing sensitivity, longer trial periods, etc.) Current research may broaden audiometric cri­teria for candidacy to better reflect functional auditory capacity.

MEDICAL AND SURGICAL CRITERIA Children should also undergo a complete medical evaluation to rule out the presence of active systemic disease that would contraindicate implantation. The child must be otologically stable and free of active middle ear disease prior to cochlear implantation. The radiologic imaging criteria used in adult candidates are applicable to children.

PSYCHOSOCIAL CRITERIA Preoperative assessment should entail evaluation of the child in the home, social and educational con­texts to ensure that implantation is the proper inter­vention. In some instances psychosocial factors may be used as exclusionary criteria; however, in all cases psychosocial data should serve as a baseline for tracking cochlear implant outcomes. Parental ex­pectations must be addressed, and commitment to habilitation is essential.

INFORMED CONSENT  The parents of a deaf child are responsible for deciding whether to elect cochlear implantation. The informed consent process should be used to assist parents in making this decision. Parents must un­derstand that cochlear implants do not restore normal hearing and that auditory and speech outcomes are highly variable and unpredictable. They must be in­formed of the advantages, disadvantages, and risks associated with implantation to establish realistic expectations. Furthermore, the importance of long-term habilitation with cochlear implants must be stressed. As part of the process of informed consent, parents must be told that alternative approaches to habilitation are available, for example, through sign language. All children should be included in the in­formed consent process to the extent of their ability, as their active participation is crucial to (re)habilitative success.

A POSITION PAPER OF THE NATIONAL ASSOCIATION OF THE DEAF

Published in April, 1993

Background

On June 27, 1990, the Food and Drug Ad­ministration (PDA) approved the marketing of the Nucleus 22 channel cochlear prosthesis for surgical implantation in children aged two through seven­teen. ( Commercial distribution for postlingually deafened adults was authorized in 1985: investi-gational trails began in adolescents, age ten to seventeen, the same year and in young children, age two through nine, in November 1986.) This recent PDA approval of marketing childhood implants, recommended by its Ear, Nose, and Throat Devices Panel, was based on a submission by the manufacturer, the Cochlear Corporation, which had reported on a total of 200 implanted children, ages two to seventeen, who had bilateral, profound sensorineural deafness.

Position

The NAD deplores the decision of the Food and Drug Administration which was unsound scientifically, procedurally, and ethically.

Scientific Errors

Implantation of cochlear prostheses in early deafened children remains highly experimental. There is no evidence of material benefit from the device in this population and no evaluation of the long term risks. There is no evidence that the speech perception of these children is materially enhanced, but there is evidence that many pro­foundly deaf children would have better , however limited, speech perception with conventional hearing aids than with implants. There is no evidence that early implanted children will do better at acquiring English than they would have with noninvasive aids or with no aids whatever. There is no evidence that early implanted children will have greater educational success than is cur­rently experienced by children of similar cir­cumstances who do not undergo this invasive procedure. The PDA Panel has required the Device packaging to include the warning that congenitally deaf children may derive no benefit from the de­vice, but the evidence points to the same conclu­sion for children deafened below the age of three and possibly age five and better.

Current programs of research on cochlear implants with children are conducted without re­gard to the quality of life that the child will ex­perience as a deaf adult implant user. It is presently unknown whether the implant and the profound commitment of the parent and child to aural/oral training that is generally required, will delay the family's acceptance of the child's deafness and their acquisition of sign communication. The impact of the implant and the required aural/oral training on the child's social, intellectual, and emotional development and mental health, or on the child's integration into the deaf community, have not been assessed This failure alone to consider the impact of the implant on the child's future quality of life qualifies the implant programs as highly experimental - just what the World Federation of the deaf deplored when it resolved, "(Implant developments are) encouraging for persons deafened after some years of hearing (but) experimentation with young deaf children is definitely not encouraged."

Procedural Errors

The PDA erred in failing to obtain formal input from Organizations of Deaf Americans and from deaf leaders and scholars knowledgeable about the acquisition and use of sign communication and English in deaf children, the psycho-social de­velopment and education of deaf children, and the social organization and culture of the American Deaf Community. The research evidence makes abundantly clear that early deafened implanted children will rely on sign communication in school and in much of their lives. Many, perhaps most of these children will become or already are members of the American Deaf Community. Audiologists, speech and hearing sci­entists, manufacturers, parents and members of the PDA staff were all consulted formally by the PDA in arriving at its decision. PDA's failure to consult deaf spokespersons represents, if an oversight, gross ignorance concerning growing up deaf in America, or if willful, an offense against fundamental Ameri­can values of individual liberties, cultural diversity and consumer rights.

Ethical Errors

Experimentation on children is ethically offensive. New and high technology that entails invasive surgery and tissue destruction is used, not for life saving, but for putative life enhancement. Adults, such as these children will become, when given the option of such prostheses, overwhelmingly decline them. The parents who make the decision for the child are often poorly informed about the deaf community, its rich heritage and promising futures, including com­munication modes available to deaf people and their families. Far more serious is the ethical issue raised through the decisions to undertake invasive surgery upon defenseless children, when the long term physical, emotional and social im­pacts on children from this irre­versible procedure - which will alter the lives of these children - have not been scientifically established.

PERSPECTIVES ON COCHLEAR IMPLANTS

By Mike and Sharon Gurry

Our son Andy, was implanted with a Cochlear Im­plant at the age of nine in 1987. At that time he was in the fifth grade at California School for the Deaf in Fremont.

Andy was born hearing and was deafened by a bout with meningitis at 18 months of age. He experienced aided hearing in his left ear at 40-60db until he was age seven. At that time he lost the balance of his hearing due to the fact he had a fistula (a hole between the middle and inner ear). The fistula was discovered and surgically closed by Dr. Owen F. Black while we were still living in Oregon. We became aware of Cochlear Implant technology through our asso­ciation with Dr. Black. When we became aware that the PDA approved implantation of children, we requested that Andy be considered for an implant.

Dr. Black felt Andy was a good candidate for the Implant because he was post lingually deafened. It was a joint decision between parents, Andy and Dr. Black, to implant Andy. We went into it with our eyes open, not with the expectation that Andy would understand speech like a hearing person. We had hoped for an improvement in his speech recognition and lip-reading skills.

Prior to the surgery, we arranged for a representative from the Cochlear Corporation to come to CSD Fremont and inservice the people who would be working with Andy. The representative was met with much criticism. As parents we were attacked for putting a child through such invasive surgery for no perceived benefit.

Andy was initially thrilled with the new sounds he was hearing, but the novelty soon wore off. After he was implanted he returned to CSD where the bi-lingual / bi-cultural approach is embraced. This meant ASL was used in the classroom and, as a result, teachers and students rarely used their voices. Thus Andy had little incentive to learn to use his implant and understand speech. He did participate in speech therapy and his speech and lip-reading skills improved significantly. However, when tested for his ability to understand speech based on audi­tory imput alone, he showed little improvement.

Looking back at the decisions we made, we are dis­appointed Andy did not capitalize on the capabilities of the implant and we as parents did not place enough importance on his school placement. His improvement in lip-reading continues today and we are grateful for that.

Christa Lopez

My name is Christa Lopez and I am a junior attending Loyola Marymount University in Los Angeles. I am majoring in Education with a minor in Special Education. My goal at the present time is to be a teacher of the deaf, or working in the field of the deaf, possibly being a counselor or a public speaker / advocate. Who knows what is going to happen?

I am profoundly deaf and was diagnosed at 13 months as severely hard of hearing by Dr. William House from the House Ear Institute. I was fitted with hearing aids immediately, and was enrolled in the John Tracy Clinic. Immediately the years of therapy and tutoring began. By the age of 15, I became profoundly deaf. I have what is called Schriebe's Syndrome, which causes a progressive hearing loss. Over the years, I have slowly continued to lose some of my precious hearing.

I am the oldest of three children. My sister and brother have always had extreme patience and en­couraged me to succeed. My family has always been a strong support for me throughout the years of my schooling, tutoring, speech, etc. Without my mom's help and guidance, I would not be talking, nor would I be attending LMU. The success that I have achieved would have never been possible if my family hadn't been my number one support and fan.

I have been mainstreamed my entire life, from the time I was in elementary school to college. I have always been the only deaf person in any school I have attended. Because of that case, I have had to educate my teachers and peers about my deafness. I have always performed well academically. In order to do well, I had to put in many extra hours to keep up with my hearing peers. My mom was my helper and tutor, who spent considerable time quizzing me and making sure I knew my material. There were countless times when I became frustrated and wanted to give up. I am glad I kept up my drive and perseverance, it has all paid off in the end.

Growing up deaf has been a difficult experience. It has shaped and affected my family tremendously. I am the person I am today because of my deafness and all the obstacles and hardships I have had to deal with. I have overcome many obstacles and have fought many battles. I am an oral deaf person who does not use sign language to communicate with my peers. I interact with my hearing peers very well and most do not think I am deaf. It has been very difficult to help others understand my plight, but I am trying my best to educate them.

I have always performed quite well with my hearing aids and the issue of getting a cochlear im­plant was never an option for me as a child. My parents always brought up the subject, but I was not ready to deal with that prospect at the time. When I was 15 years old I told my mom I wanted to get a cochlear implant. I was a teenager growing up with hearing peers and it was very difficult not being able to talk on the phone, etc. I decided that if there was something better in the medical field that would benefit me tremendously then I should go for it. What did I have to loose, nothing! The cochlear implant surgery was performed on June 25, 1992 and I was hooked up with the outer device on July 23, 1992 my sixteenth birthday! It was a very special day that will be forever embedded in my mind.

From that day on my life changed tremendously. I had to work extremely hard to relearn sound with my cochlear implant. Within one and a half years, I was talking on the phone.. Music was clearer and had started to become more precious to me. I can hear crickets, birds, the wind blowing through the trees, water dripping from a faucet. Everything I could never hear with my hearing aids sounds so beautiful to me with my implant. My speech improved a bit and continues to do so. Because of the amount of things I hear, many people believe that I am not deaf and that I do not need any help or assistance in any area. This is not so. Yes, I perform very well with my implant, but there are many holes that are not filled and many things that I consistently miss. The implant has been a lifesaver for me, but I am still deaf and I always will be. The implant makes my life in the hearing world a little easier and at the same time, a little harder.

It has been very difficult growing up deaf, facing and trying to overcome countless obstacles. Each and every obstacle that I have ever had to face has made me a stronger person. I thank God every day, for giving me perseverance and strength to continue to fight and educate others, for giving me this wonderful opportunity to have the implant and to do so well with it, for the love and support of my family, for my hearing aid, and for me just being me!

TWO STORIES: ALAINA AND NINA TALBOT

My name is Alaina Talbot. I am a 12 year old girl who is deaf. I've had my Cochlear implant since I was 6 years old. I was best friends with Ryan, who was 4 at the time, and wanted to do everything he did. He had an implant

It has been 6 years since the operation for my implant. When I was 6, I wore it all the time. I loved that implant, I could hear everything. I couldn't really understand what people were say­ing, but I learned how to control and use my own voice better. I had good speech for a deaf girl at that age

But when I was around 8 or 9 years old I started rejecting it. I felt it was too big and bulky. I was embarrassed to wear it. I went to a hearing school with a deaf program. What happened was, the hearing kids stared at the deaf kids, especially Ryan, another girl with an implant, and myself. So I stopped wearing it completely. Nothing my mother did would make me wear it, except at speech. I totally hated it by this time, because I thought the noise was too loud. If I played on some plastic play equipment it would cause my map to change, but they didn't know that yet. I complained it hurt. After a new mapping session, I would like my implant for at least a week Shortly after that, I'd reject it again I'd say, "It's too loud again."

I'm in middle school now, which is by a mili­tary base, and John Wayne Airport. I hear air­planes all the time, which irritates me. Once in a while I get fascinated with how it works and I wear it for a while, but most of the time I don't. That's how I feel about my Cochlear implant. Do I like it? Yes and No.

You know the old adage, "If only I knew then what I know now, things would be different." My daughter would not be implanted today. But that's hind-sight, and to say we are regretful for trying, would not be the truth. The truth is that we have a pre lingual, pro­foundly deaf, 12 year old daughter. We have chosen total communication with an emphasis on S.E.E. as our methodology of communication for both our home and her educational environment. It has been our family's desire and philosophy to provide for both of our children a strong family support which truly is only possible through good communication. For Alaina we wanted to provide her with a variety of tools in which to explore, and to eventually find her own best way of expression. She was instrumental in the decision to receive her Cochlear Implant. At the time she was 5 years old. She had a few friends with implants who seemed to be successful and enjoying them which influenced her a lot. She would walk around with a square card box or whatever else she could find and wear it under her shirt with a piece of toilet paper or other inventive ideas to represent the ear-hook which holds the receiver and magnet to the scalp. She begged and prayed and prayed some more. We had looked into it when she was 2 years but decided it was too early in it's developmental stages. At that time only a single-channel device was being offered. We were also very pleased with her own development, academically and socially. Her oral skills, while weak, were also starting to emerge. We just felt like there were too many uncertainties, so at that time we shied away.

As the years progressed so did Alaina. She was identified as "gifted". Her signing vocabulary was extensive, her thoughts intact and at grade level, and she'd been fully mainstreamed into the hearing classes with an interpreter. Her oral skills were coming along but she definitely had a deaf quality. It took real concentration to understand her. What worried us most now was the fact that she couldn't hear environmental sounds while growing more and more independent. An implant was starting to sound attractive to us for the practical purposes of keeping her out of harms way. It's hard to let your deaf child play outside, ride a bike, pet other animals. How could she know that a car was honking, or a dog was growling, or all the other warnings that keep our "other kids" out of trouble? So once again we explored the possibility of an implant.

By the time she was 6 years old, the 22 channel device was being implanted. It was PDA approved in adults but not in children. They were, however, im­planting children, but insurance was not covering it. That meant if we were serious we had to come up with in excess of $40,000.00. Not to mention she had to be interviewed and there was strict criteria. She had to be profoundly deaf even aided, since once the nerve is replaced with the coil it would result in total and complete deafness, on the side that is implanted. Well, Alaina continued to pray and we got creative with help

in funding. She also passed the tests. God help us, the next step was surgery. My baby, a surgeon, her head. It was intense, invasive, and still so many questions. But it was set, she was going in. What would the future hold? We didn't know, but we did know we were doing what we thought was right for her at the time. It wasn't an easy decision. It wasn't something we jumped into, nor was it the hope of having her become hearing. We'd done our homework. There were no guarantees. We just hoped that it would somehow enhance her life by maybe helping to save her from these things parents tend to fret over. And maybe by chance it could help her to hear more, maybe even words. But that was something not promised or known, only time and maturation would tell.

The operation a success, the next step hook up and mapping of the 22 channels. That's when eve­ryone gathers around in anticipation of the look on her face while hearing her first sound. Well.... she heard but was confused. She tried to appear happy but really it was too much. We let her get used to it, gradually building up to wearing it all the time. It never seemed right though and her desire to wear it waned shortly after receiving it. She continued though, with lots of prodding and encouraging. She just didn't get out of it what she herself had hoped for. Instead it was lots of speech therapy both in school and private.

At school we had to fight to get the 2 hours of individual speech time she needed to gain control and understanding of oral and aural skills. So you can imagine how the speech therapist felt when she stopped wearing it. It became a test of wills and an on going battle. She would complain it hurt, but some­times we thought she was giving us an excuse not to wear it. The mapping did distort at times which re­sulted in some annoyances and quite possibly pain. But it was also a pain to drive 2 hours and pay $75.00 per hour to have it re mapped. It seemed the whole thing was becoming more of a hindrance than a help. Our relationship was starting to suffer. The speech therapist at school was riding me all the time and making me feel like my daughter was a big manipu­lator, which resulted in my getting upset with her. Both my daughter and I were feeling bad. I was now constantly on her and I must have tried everything, from encouraging, to bribing, to discipline by taking away what little privileges she had. Something had to give. The very thing that we held dear in our family was being compromised, the happiness and joy we had for life. As a parent there are so many other thin that need attention and molding. It is not fair to focus on just one.

To be fair, the benefits of the implant are real. She did hear my voice, the piano, and water dripping from the coffee pot. She also heard the dogs barking and the birds singing. But it was too much noise for her. She could not seem to isolate the sounds. To her it was coming from everywhere. It also tended to sound mechanical and not smooth. She started to wear it less and less. Over the years she has now become a non-user, even though I still encourage her to try to wear it.

We all have grown in this and realize it is her body, it is her life. Only she knows if it hurts, if it helps, or how useful it is to her. I feel she will make a good decision based on the benefits she receives. If it is meaningful to her she will use it. If that does not happen, then at least we know as parents, we've tried to give her every opportunity for communication success. And we still do. She still uses TC with her voice as support. She is understandable but obviously deaf. She signs, both English and ASL, so she can communicate with most deaf and hard of hearing people. She is independent and has no shortage of self confidence. She orders food when we go out and talks to anyone who'll listen. That's what we were hoping for, a child that can communicate with anyone and everyone, deaf and hearing.

She probably would have developed like that without the Cochlear implant, and who really knows maybe it did help her speech ultimately. But I have the feeling she'd have been the same without it.

Are we sorry we ever got it ? No way, we tried. She can never fault us for not giving her the chance to see if it could have benefited her. She will always know we love her and will unconditionally for who she is. She will always have our support.

One last thought. We were approached by some members of the very vocal and opinionated deaf community during the time we were researching and trying to make a very tough decision. We feel the decision of implanting should to be left up to each individual family and what's right for them. The decisions made concerning our children comes from the need and desire to help them develop to their full potential. It does not mean we don't accept their deafness. We are blessed to live in an age where advances and technologies can help to bridge a very real communication gap.

Nita Talbot