With early identification, and high quality technology, most kids with hearing loss have enormous potential to learn to use audition to learn language. For them to do so successfully, it is essential that they wear technology full time. This requires an active commitment on the part of families. But getting parents to accept and use technology is not always easy. When families resist using technology the problem is not usually about the technology – it is about accepting the hearing loss. That is never an easy thing. Technology is not a problem for today’s parents. They use cell phones, computers and lots of other technology on a daily basis.
Even families with a history of hearing loss are distressed about the identification of hearing loss in a new baby. Putting hearing aids on a baby means saying to themselves and to others, “my baby is different.” In their distress they will need to deal with the distress of extended family members. Grandparents, meaning well, and dealing with their own grief, can put stumbling blocks in the way of helping parents accept the need for hearing aids and full time use. I know of grandparents who have asked the parents not to bring the child to a family event with hearing aids on because others in the family won’t accept it, or because it may mean that the parent’s unmarried siblings will have trouble finding a mate. What a message this gives to parents and to the other kids in the family. Hearing loss is something to hide, to be ashamed of!!!
Pay attention to how parents are dealing with the diagnosis
Until families accept the hearing loss, they cannot move ahead and do what needs to be done. Audiologists need to be sensitive to how parents are dealing with hearing loss. While we consider it urgent that hearing aids be fit immediately, we need to first help parents deal with their grief.
Talking to other parents
Talking with others who have been through it helps. Support groups for parents are an excellent way to get parents to meet other parents. Getting support groups organized can be a problem. As much as they need it, parents may feel that they do not have the time to “take care of themselves” and will only spend time doing things directly for their kids. Somehow we need to help them understand that taking care of themselves DOES help their kids. Organizing groups around educational topics (e.g. developing language skills, keeping technology on the ears etc.) may get families into the group and then the support will take care of itself. Many families find support on the internet. The cochlear implant community has done an excellent job of developing internet communities for families to discuss issues.
Talk about why technology is important
Audiologists need to talk to parents about why technology is important. They need to understand that for kids to learn to talk and read they need language. They need to understand that for them to develop language, they need to develop their auditory brain (see Flexer post March 20, 2012). For kids with hearing loss, hearing technology is the route to the brain. Without appropriately fit hearing technology, the auditory brain just does not develop.
What is your goal for your child?
I find it useful to ask parents what their goal for their child is. Where do you want your child to be at age 3,5,10 etc? Most will say they want their child to be mainstreamed with siblings and neighbors. That is where audiologists have the opportunity to discuss what it takes to reach that goal. My favorite statement is If a child wears hearing aids 4 hours a day, it will take him 6 years to hear what a child with normal hearing hears in a year. That is a startling statement. And a critical one. It makes it clear that we have absolutely no time to waste. We need to get hearing aids on kids quickly and keep them on all waking hours. We used to say “except when they are in water” but now there are hearing aids and cochlear implants which can be used in water, and I am sure more will be developed soon, so now we can say “he needs to keep his hearing aids on all waking hours”.
Providing support for grandparents in this process will help. They should be invited to audiology appointments so they can see what is going on, and see the difference between what their grandchild hears with and without hearing aids. They can see older kids who are talking and happy and see their parents who have survived the diagnosis and moved on. Everyone needs to see see that it is not the same old deafness. Kids with hearing loss today have infinitely more options than kids did even 20 years ago – because the technology is better.
So let’s have everyone hold hands and move forward together. Audiologists need to provide sympathy to families but help them see that the world is not all gloom. Once kids start responding to sound with hearing aids, it becomes easier for families. So we, as audiologists, need to be sure the technology is doing what it needs to do to get kids to hear, so families can see results, and move on. It does not mean that parents will not be sad for a long time. They will. That is just a fact of life. But it does not mean that they cannot move on and work through it.