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The Consumer Handbook on Tinnitus
Chapter 1
The Emotional Impact of Hearing Loss

David Luterman, D. Ed.

Dr. Luterman is Professor Emeritus at Emerson College in Boston and Director of the Thayer Lindsey Family Centered Nursery for Hearing Impaired Children. He has dedicated his career to developing a greater understanding of the psychological effects and emotions associated with hearing loss and the caregiver role. He teaches professionals to understand the emotional responses of parents as they come to grips with the hearing loss of their child. He has lectured extensively on counseling throughout the United States, Canada and abroad, and has authored a number of books on the subject matter of hearing loss in children.

I often tell parents who have recently completed the diagnostic process that you have the same child you went into the testing booth with—it‘s just that you’re looking at him/her differently now. By this I mean that the “problem” at this time is the parents’ problem, not the child’s problem. For the parents, it’s a grief reaction: they’ve lost the child they thought they were going to have and the life they expected to live. This will invoke for the parents many feelings of loss. For the child, there will be feelings associated with the hearing loss, but these will not be one of loss as almost all children with hearing loss have never heard normally or have no memory of hearing. These children have little or no concept of what they’ve lost.

In the past, I’ve compared the parental loss to a death, but I have begun to see that this is no longer accurate. In a death, there’s finality to the grief, there’s a burial and life can go on, albeit with pain and loss. With hearing loss the grief is chronic, lived with 24/7. The child is a constant reminder to the parents of this loss. No matter how well adjusted the parents seem to be to the reality that their child has a hearing loss, there will be trigger events that remind them of the loss and those initial feelings of pain and sorrow return. Triggers can be as simple as a birthday party or the anniversary of their original diagnostic evaluation. What seems to happen after the initial pain of the diagnosis is that parents learn to live in a bubble of “normal” hearing loss and adjust to the disability of their child by not thinking about it. The trigger events remind them just how abnormal their life really is and what they’ve lost. . .

Stages of Diagnosis

The feelings experienced in the early stages of diagnosis are quite intense, and the emotional response to the child’s hearing loss is independent of the degree of loss. The disability is never in the audiogram, it’s in the perception of the parents. Parents of children with mild hearing loss seldom appreciate being told that they are lucky their child can hear so much. For them it’s still a loss for which they have a right to grieve. In fact, research has shown (Yoshinaga-Itano and Abdala de Uzcategui, 2001) that parents of children with mild to moderate losses are more stressed than parents of children with severe to profound losses. Parents of children with mild to moderate losses have more decisions to make regarding school placement and many of these children are on the cusp of needing a cochlear implant. Outcomes and decisions for these children are more ambiguous than for children with more severe losses. Also the mildly impaired child has potentially more hearing to lose and parents often live with the constant fear of a further increase in the hearing loss.

At the time of diagnosis a host of uncomfortable feelings usually emerge, among them fear, inadequacy, anger, guilt, vulnerability and confusion. Underlying all this for hearing parents is the profound feeling of loss. The pain of this loss never quite goes away, as one father of a fifteen year old said: “When you first find out your child is hard-of-hearing, it really hurts and then it becomes a dull ache that never goes away.”

All the feelings described in this chapter are appropriate to life’s situation: the feelings just are—they need to be listened to, validated and not judged. Behavior has consequences that can be evaluated so parents need not be responsible for how they feel but always and only for how they behave. . .