This issue of the blog is being written by my good friend Johnnie Sexton. Johnnie has worked with children who are deaf and hard of hearing for 33 years. In recent years, he designed the early intervention system for audiology in North Carolina. He has devoted his energy in the past 2 years to redefining counseling for families with children who have hearing challenges and the professionals who provide services for them. He has owned and operated a private practice specializing in educational audiology services for over 25 years and has established the nonprofit agency, The CARE Project, Inc., serving as Executive Director, for the advancement of family, professional and pre–professional training opportunities in counseling.
As Audiology continues to evolve as an autonomous profession, the role the Audiologist plays in counseling must evolve as well. In the early days of Audiology, counseling and aural rehabilitation were major components of day-to-day practice. Over the years, as Audiology became more diagnostic-, treatment- and technology-oriented, we matured and learned more than was ever imagined about audition. Along the way, it seems that we have lost the focus somewhat on counseling and we have become dependent on diagnostics, treatment and technology as our driving force. We may engage in information counseling, which can be one-way communication based on content.
How does this journey begin for parents? Before a child is born, it is normal for the expectant parents to form a bond with baby (Bowlby, 1988). There are expectations that develop, on the part of the parents, that their baby will be “normal,” perfect, beautiful and happy, disease free and disability free. When the baby is born and there is unexpected news, such as a potential for the child to be hard of hearing or deaf, then the parents begin an emotional journey based on this new information. Typically, the professionals who surround the parents at such a time throw a great deal of information at the parents. Parents usually are stuck in a state of shock and are unable to process much, if any, information about the hearing loss, technology choices/options, communication mode choices, etc.
Counseling is of particular concern when it comes to working with families who are learning for the first time that their child has a hearing loss. Most parents who have a child born deaf or hard of hearing are normal hearing themselves. They have no knowledge of hearing loss or deafness; they have no idea what to do first, what to ask or how to go about taking care of a child with such challenges. The Audiologist is the professional who must “break the news” and the initial reactions from the parents are almost assuredly emotional.
How we, as Audiologists, respond to this situation is critical in the processing of grief. We may be under time constraints; we may be uncomfortable with the outpouring of parent emotions; and we may be ill prepared to move the parents forward. The likely step taken by Audiologists is to give the parents an “information overload,” providing them with test results and recommendations. While this is very important, we should first become an active listener and allow the parents to express and process their grief. Audiologists are prepared to discuss technology solutions and management strategies immediately with the family, but the family is not ready for that discussion until they deal with the fact that their child does not have normal hearing.
How do we help these parents? It is important that we give the parents the opportunity to ask questions, express concerns, bring up their own issues and allow them to grieve. Grief is a process and moving forward through the stages of grief is key to the parents embracing their child with hearing loss and moving forward in life. I propose that there are 7 stages of emotions that we encounter in the grief process:
Shock: Parents feel stunned and even numb to hear this news.
Denial: “This can’t be happening to us”; the feeling that this news just cannot be true; “not my child.”
Pain: understanding that the diagnosis is real usually induces a great deal of pain and anguish.
Anger: Now they are mad…and may engage in “blaming”…..blaming God, their own parents, genetics, each other, etc.,
Depression: Reality sets in even more so; parents feel bad about the news and in a strange way, depression is a turning point for the parents in the direction of accepting this news,
Acceptance: Parents finally “get it”; they embrace what is and begin to want to know what to do to address it,
Advocacy: In order for the family to be successful in managing the child with hearing loss, they have to move beyond acceptance and go into the world to chart a course of their child to have the best life possible.
These stages are real and very much alive with parents and families. It is our responsibility as Audiologists to partner with parents in identifying these very feelings and develop strategies for moving through the process. This process is not always sequential and is situational. Grief is present throughout one’s life and parents need to understand that there will be grief when new circumstances occur: going to kindergarten, entering middle school, high school, going to college, getting married, getting a job, etc.
It is important to utilize tools that have proven to be useful with parents and professionals in addressing the issues of grief and the journey towards resilience. The use of shared experiences is one way to build a sense of community, connectedness and comfort and CARE teaches the importance of active listening while on this journey.
Through use of documentary film segments of many perspectives from the deaf and hard of hearing world, parents and professionals are able to see what others in similar situations have experienced without having to talk. This activity usually opens up those very people and they become comfortable with sharing their own stories about their own families and/or patients. The more sharing occurs, the more participants begin to realize that they are not alone, they are not “broken,” and that there are resources in their own local communities.
Ultimately, it is very important to encourage resilience. It is the author’s experience that most of these emotional journeys beginning with grief do, indeed, have positive outcomes because people have the innate ability to bounce back from stress and adversity.
If Audiologists are not prepared for or comfortable with the task of counseling, they must either find the training to develop these skills or find other resources for these families to make sure they get what they need. It is also important to recognize that counseling described here in this article is in no way a substitute for mental health counseling and we should recognize when parents need to seek help from professional counseling services.
References
A Secure Base: Clinical Applications of Attachment Theory. London: Routledge, Bowlby, J. (1988).
American Psychological Association website, 2010.
Counseling Children with Hearing Impairment and Their Families, by Kris English. Allen and Bacon, 2002.
Counseling in Audiologic Practice, by John Greer Clark and Kristina English, Allen and Bacon, 2004.
Counseling, Aural Rehabilitation and the CARE Project: Interview with Johnnie Sexton, by Douglas L. Beck, AuD., American Academy of Audiology, 2010.
