I had intended to write this piece after 50 years of active clinical work, but at 73 years of age I cannot be sure of another year.
Soon after starting my career as a clinical audiologist in 1960, I realized there was a serious gap in service delivery. After the diagnosis of childhood deafness and the fitting of hearing aids, little or no help was available to families in making the adjustment to having a child with special needs. We referred families to schools for the deaf or to a few teachers of the deaf with an interest in working with young children.
Invariably, these limited options were child-centered. Despite the prevailing ideology that preached the importance of parents, the parents' role was relegated to passively observing treatment and receiving professional expertise. Seldom was any attempt made to actively engage parents in the intervention or to deal with issues surrounding the family's adjustment.
To fill this need for services, I started a family-centered nursery for young children with hearing loss in 1965. Parents of newly diagnosed children with hearing loss (in those days they were about 15 to 18 months old) enrolled in the program were required to watch their child interacting with nursery personnel through a one-way vision mirror and then in individual intervention focusing on communication. Through the years, the program used a variety of communication strategies. In taking a diagnostic approach with the child that was supportive of the parent's wishes, we used a variety of communication methodologies that best suited the child and family. Methodology has never defined the program.
After observing their child, parents became actively involved in the nursery and the intervention. We saw our relationship with them as collaborative. Parents participated in a support group with me that followed a non-directive format in which they had ample opportunity to talk about their feelings and experiences.
After retiring from my full-time position as a college professor, I have continued working in the nursery. For 42 years I have interacted with parents of newly diagnosed children with hearing loss and helped them come to grips with their reality. I have felt privileged to be a part of the process. From the vantage point of this program, I also have been able to witness the incredible changes in early childhood deafness.
At this stage in life, summing up becomes important. Based on my experiences, here are 10 considerations (not in order of importance) for early-intervention professionals to apply in addressing childhood hearing loss:
(1) Technology is marvelous; parental empowerment is better.
The advent of newborn hearing screening, digital hearing aids, and cochlear implants has moved the field into a technological age in educating children who are deaf. The changes brought about by technology are breath-taking. We can now expect almost all children who are deaf in the nursery to develop clear speech and age-appropriate language skills and to enter the educational mainstream.
This is in marked contrast to the technological dark ages of the 1960s when I began my clinical work. Then the only device available was a cumbersome hearing aid that could barely amplify the hearing of a child with a moderate loss, let alone one with a severe or profound loss. Despite the best efforts of parents, many of these children had limited speech and language skills and were educated in schools for the deaf.
The technology, however, is only as good as the ability of parents (and professionals) to use it. What benefit is there if parents lack the emotional and cognitive wherewithal to employ the technology? Parental empowerment trumps technology.
(2) Informing parents is okay; deep listening is better.
Parents need information and it is the responsibility of professionals to provide it. Information must be given with sensitivity to the parents' ability to absorb it and with awareness of their emotional state. Listening deeply to parents and reflecting back their statements of feelings is a powerful clinical tool that belongs in the arsenal of every audiologist.
In the early stages of diagnosis, parents are emotional and their ability to deal with information is limited. They are best helped by being given permission to share their feelings within a supportive relationship. Clinicians are dealing with people who are emotionally upset, not emotionally disturbed. As a profession, we need to give ourselves permission to access our clients' emotions.
(3) Going only as fast as the parents can go is good; rescuing parents (and kids) is not.
Impatience with the grief process often leads professionals to try to rescue the child from the parents' feelings of inadequacy. But parents in the early stages of the diagnostic process need time to emotionally accept and to begin to absorb a bewildering array of information. Often they will go into denial.
The professional, in a hurry to start the therapeutic journey, may try to bypass parental grief and assume responsibility for managing the child's program. This results in a dependent parent who will rely on professional wisdom over self-empowerment. Going slowly in the early stages of the diagnostic process and making sure not to “over-help” pays huge dividends later on. The challenge for the clinician is to find the therapeutic equilibrium of helping without creating dependency.
(4) A diversity of communication methodologies is good; a one-approach-fits-all is not.
If I have learned anything over nearly 50 years in the field, it is that there is tremendous diversity in the population of deaf children. Some children will benefit from a great deal of visual input (i.e., signing), while others won't need it.
The audiogram is not a good predictor of this preference. Some children with severe hearing losses can use their limited hearing quite well, while others with seemingly more hearing are more visually oriented.
Early therapeutic interaction with the child needs to be diagnostic in nature, and the therapist must see the child through a neutral lens. If we observe carefully, the child will teach us the way he learns best. It is our responsibility to fit the methodology to the child, not the child to the methodology.
(5) A little signing is a good thing; a lot of signing is not as good.
Contrary to what ardent auralists tell us, a little signing for an infant prior to cochlear implantation is a good thing. It reduces parent-child frustration and teaches the child a communication strategy. We have found that after cochlear implantation the child gradually drops sign language as he acquires aural skills. The signing does not seem to interfere with the acquisition of speech and language, and the signs remain useful to the family when amplification is not available.
I never thought the bilingual, bi-cultural approach could work for normal-hearing parents. They seldom could develop sufficient skill in American Sign Language to be effective language teachers, and to “give up” their child to the Deaf community would be nearly impossible for most such parents. Any approach that bypasses the parents is doomed to failure.
(6) Working with the child is good; working with the whole family is better.
Working with the child fits the comfort level of most clinicians and is the focus of most professional training. Unfortunately, this is usually the least effective way of working. The clinician sees the child for a limited number of hours a week, while the parent sees the child for most of the day.
We can be much more efficient if we make the home conducive to learning language. Enlisting the family in the intervention by viewing parents as the primary teachers and the clinician as the coach pays dividends. In this way, we empower parents and extend our teaching into the everyday life of the child. Siblings and grandparents also need to be included.
(7) Early detection is good; newborn hearing screening is not so good.
Newborn hearing screening seems to be the sacred cow of our profession. Yet for us who see the aftermath of screening, it does not look nearly as good.
When a child's hearing loss is detected at birth, parents invariably mourn that they never had a chance to enjoy their child. The problem of false positives (75% in Massachusetts) will not go away as long as we are committed to screening in the first 48 hours. That is because many infants are born with a transient conductive hearing loss that will spontaneously clear up if hearing is screened later.
False positives must always be a concern because of their potential to interfere with the bonding process that is critical for infant emotional health.
In addition, there is a problem with non-compliance. According to the ASHA Joint Committee, almost half the infants who fail the initial screening do not receive appropriate follow-up. I suspect this failure is in part a function of trying to communicate with parents when they are least receptive to receiving and processing information. For example, several families have entered the Thayer Lindsley Family Centered Nursery much later than the 6-month guidelines because hospital personnel had minimized the screening results.
As a profession, we have lost access to parents in those critical early stages of the diagnostic process. Instead, hospital personnel with a minimum of audiological information and perhaps limited counseling skills are providing parents with screening results. The message to the parents must be subtly nuanced so as to alert them without needlessly alarming them.
If screening could be provided later at well-baby clinics or at the infant's medical home, many of these problems could be resolved. We would have a more intact parent-child relationship, and I suspect many fewer false positives and much better compliance. Our profession needs to look at the feasibility of screening somewhat later. If that is impossible, then we must take more control over the actual screening. Families deserve nothing less.
(8) Cochlear implants are marvelous; separating implanted children from those wearing hearing aids is not.
There is a trend to view implanted children as a separate entity and, while I think there may be some psychological ramifications to having something in their heads as opposed to on their heads, the educational and social issues are the same. The net result of cochlear implantation is a hard-of-hearing child. This child has all the attendant problems that a mild to moderate hearing loss imposes.
It is not in the best interests of these children to separate them from the general population of children with hearing loss. We all need community, and to limit the possibilities by restricting a small pool of people even further reduces the chance of community. Seeing implanted children as somehow exotic also limits their access to clinical services.
(9) Mainstreaming is good; inclusion with hearing-impaired peers is better.
The thrust of our early intervention is to produce children capable of competing with hearing peers in mainstream education. To a large extent we are succeeding and many children with cochlear implants are ready for the mainstream.
However, mainstreaming as it is now practiced seems to come at a cost to the child of social isolation. There is a hunger for community that is not met by simply sending the child to the nearest local school. Too often the child is the only one with hearing loss in the school and because of his or her limited hearing fails to connect socially. Many of these children succeed academically, but are unhappy, stressed, and have few friends.
We need to expand our notion of success for these children to include psycho-social issues. A program option that I favor mainstreams a class instead of an individual, thus providing a built-in peer group. There are several programs like this in areas with large school populations. A group of hearing-impaired children is mainstreamed together and there are two teachers in the classroom—one teacher of the deaf and one regular teacher working together.
(10) The current problems in early childhood deafness are apparent; the solutions are also clear and obtainable.
I think an educational gap now exists in which technology has outstripped the competencies of many professionals in the field. Audiologists will need knowledge and skills in fitting hearing aids to infants and in mapping cochlear implants. They also will need enhanced counseling skills to work with parents at a vulnerable time. Clinicians will need to develop curricula that are developmentally based and geared toward mainstreaming.
Educators also need to be prepared for the influx of children with digital hearing aids and cochlear implants in the public schools. Classrooms will need to be modified and acoustic help provided. Programs will need to be integrated and multifaceted to educate the complete child.
If we remain mindful and committed, we can solve these problems through continuing education and application of what we already know. I think we are truly on the verge of eliminating the negative consequences of early childhood deafness. This is a very exciting age, so much so that I would love to be around for another 48 years.