by David Luterman
With the advent of newborn hearing screening, cochlear implants, and digital hearing aids, it may truly be said that we have entered the technological age in the education of children with hearing loss. Technology has dramatically changed the educational outlook for a child who is deaf—from education in a school for the deaf with limited development of speech and language skills to, for most children, integration in a mainstream program with development of speech and language skills comparable to their peers with normal hearing.
The technology, however, is not without its downside. Newborn screening is presently conducted at the worst time for parent and child. The child often has debris in the ears as a result of the birth process and consequently will fail the screening because of the temporary conductive loss. Despite our best efforts to reduce the number of false positives, it will always be relatively high as long as we are committed to screening within the first 48 hours of birth.
Newborn screening also has changed the diagnostic paradigm from a parent-driven model to an institution-driven model, with unsuspecting parents being informed shortly after birth that they may have a child with hearing loss. I could not think of a worse time to bring bad news to parents. Somehow we must reconfigure the screening protocols so that it can be done somewhat later, when the child is better able to be tested and the parent is more receptive.
Cochlear Implants: New Challenges
Cochlear implants, while bringing sound to a population previously without it and thereby enabling speech and language development, also present challenges. Cochlear implants have converted early childhood deafness from an overt disability into a covert disorder. A child with a cochlear implant functions as a child who is hard of hearing and uses a monaural hearing aid. This is a child we know; one with intelligible speech and seemingly good language and academic attainment. The linguistic and academic gaps between this child and children with normal hearing are not readily observable except to an alert teacher and the parents. But these children are often stressed by having to struggle to keep up in a non-supportive acoustic environment.
For the parents the cochlear implant seems to forestall the grief process. It is often used by professionals and parents themselves to mitigate the initial grief reaction. Parents tend to see cochlear implants as a "fix" for their child's deafness. Professionals, not wishing to inflict pain with the diagnosis, hold out the cochlear implant as a way to minimize the grief reaction. Audiologists need to understand that the diagnosis is the first step in initiating habilitation and that the parents' grief at the inception of habilitation is healthy. A grieving parent is one who is not in denial and one who will actively cooperate in the educational process.
The disability of deafness becomes more apparent when the child is mainstreamed and the widening gap between the child with a cochlear implant and children with normal hearing is noticed. This is unfortunate for the parent, as the perceptions of the cochlear implant have deferred the grief to a time of minimal support for their emotional pain. Friends and family find it hard to provide support when the child seems to be doing so well, and integrated educational settings seldom have any support programs for parents.
Putting Parents First
Under no circumstances would I want us to return to the pre-technology era. Cochlear implants and newborn hearing screening open doors that previously were closed for children who are deaf. I think the technology is marvelous and here to stay. I do feel, however, that we need to be more mindful about its application. We can easily be blinded by the promise of technology and lose sight that the most important variable in the habilitation process is the parent. Technology has not altered this truth one bit; the technology is useless if parents cannot utilize it.
In a study of families of children with cochlear implants, DesJardin, Eisenberg, and Hodapp (2006) recently concluded that "parental involvement and self-efficacy are critical aspects to consider as professionals support language learning in families with young children with cochlear implants." This truth is self-evident. I often ask parents what they see as the most important goal for their child. The thoughtful parent, after some discussion, usually responds, "I want my child to be happy." This requires us to keep the technology in perspective.
The technology does not ensure happiness for the child; only empowered parents and sensitively competent professionals can accomplish this. We must all remember that the route to a successful, happy child with hearing loss is not through technology, but through the parent.