Having a child identified with a hearing loss or any other disability can be very stressful. Some parents can deal with the depression and move ahead at the same time, but others cannot. Every pediatric audiologist has experienced the problem of helping parents move ahead while trying not to be too pushy. My mentor, David Luterman, has always said that he feels we need to wait for the parents to be ready to move ahead. On one level, I understand that, but on another, I have a responsibility to the baby with hearing loss, so I become anxious if too much time goes by without the baby having access to sound.
What are we trying to communicate?
What kinds of things can we say to families to help them understand our concerns about time and to help them put things in perspective? Understandably, parents do not want to fit a hearing aid on an infant. The baby is so little, the hearing aid seems so big. I am sure that most parents feel they can wait. But can they? How long can a child wait without good auditory access before she begins to fall behind? How long will it be before there are consequences for auditory brain development? Once a child falls behind, can she catch up?
Using analogies
There has been an interesting discussion on the Ida Institute web site, discussing the use of analogies to help families understand certain issues. A common analogy is comparing hearing aids with eyeglasses. People who do not see well need to use glasses and people who do not hear well need to use hearing aids. But glasses are stylish, they do not have a negative image, and hearing aids are associated with disability and with aging. What can we do to help parents feel more accepting?
When parents express the idea that they want to wait for the child to be older, or wait until the child can decide for himself if he wants a cochlear implant, I use an analogy about other illnesses. I ask, “If your child had diabetes or cancer, would the decision about whether to provide medication be left to the child?” Usually that helps parents understand that there are decisions that they need to make even it the decision is not one that the child appreciates at that moment.
Using analogies with kids
As kids get older and come to recognize that they are different from their peers, we may see them rebel against using personal technology and FM systems. Depending on the degree of hearing loss, we may see different things. Kids with mild hearing loss have times when they can hear without hearing aids and may decide that they can do without hearing at other times. Kids with moderately severe or severe hearing losses know that they cannot hear without technology and are less likely to give hearing aids up, but will give up FMs. Kids with profound hearing loss will not want to give technology up if they hear better with it, but they may give it up if it’s not providing much benefit.
Prior to figuring out what kind of analogy would be useful, it is important to figure out why the child is refusing technology. I frequently use an analogy about seeing in a room with a very dim light bulb. Why would you want to live that way and not turn on more lights? I will also talk to kids about what will happen if they do not hear – the effect on learning, getting in to college, and employment opportunities. Sometimes that works, sometimes it seems too far away.
Providing support
Using analogies is just a small part of what we do in working with families. All families with children who have hearing loss need support (as do families of typically developing children). Having families meet with other families, and as kids get older, having them meet other kids, will provide the kind of support that helps everyone thrive. I love working with families and with kids as they grow and learn. I find support groups one of the most rewarding things I do. Organizing them in your community will provide assistance to everyone.
Jane – I really appreciated this piece. As a parent of a child with hearing loss who was late identified at the age of three we needed to move forward immediately with the supports and services that were offered. That included a fitting for bilateral hearing aids. I remember the tears that ran down my face while the audiologist squirted the mold material into his ears and he squirmed withe the strangeness of it all. I wish we had found help sooner, he is doing great now, but there was so much frustration at not knowing what was wrong. Part of being a parent is making difficult decisions and I really like the clear cut way you speak with parents as to what their choices are and how these choices will impact their child.