When we are working with families of children with hearing loss, especially newly identified children, we are anxious to share information that we think is critical. We (or at least I) want to get technology on babies within days, weeks at most, and get the baby into therapy. As part of this effort, we sometimes do not wait for families to be ready to hear us.

First, telling families that they have a child with a hearing loss is a shock to them. More than 90% of children with hearing loss are born to families with no history of hearing loss. They may hear the diagnosis but they are going to be stunned and may not be ready to hear anything else. They likely know little about hearing loss, certainly about hearing loss in children. They may know some adults with hearing loss who don’t like their hearing aids so they just don’t know what to think for their child.

Listening to parents

If we are going to help families accept the diagnosis and move on, it is critical that we know where the parents are emotionally. I have always found it helpful to just stop and wait after giving a hearing loss diagnosis. If parents don’t ask anything I ask them how they are doing. Some will cry, sometimes I get a remark like “how could I be”. Then I ask, what do you want to know. It is important to remember that they, likely, don’t even know what to ask. The kinds of questions we get are “Will it get better?” or “Will it get worse?”, Less frequently we may hear “ What do we have to do to correct it.”. If we know it is a sensory neural hearing loss we have to tell them that it is not going to get better.

Some parents are ready to move ahead as soon as they hear the diagnosis and want to know what to do next. They are ready to have earmolds made and to take appointments for ENT, hearing aid loan, early intervention, etc. Some parents say, they need to think about this before they move on. Some will accept a follow up appointment, others will not. Some feel the need for a second opinion before moving on. As a clinician, I worry about how much time it will take for families to be ready to move ahead. Two to four weeks are fine, but what happens when it stretches to 3-6 months?

 

What are parents really thinking?

Even if a parent moves ahead with earmolds, she or he may still be overwhelmed and not really be ready to move ahead. We need to be sensitive to that. Remember that most families know little about hearing loss when they receive the diagnosis. Most parents will go to the internet and see what they can find out. Some will be lead to sites that give them information about spoken language and others will direct them to sign language. They may come to the next appointment with a list of questions, which would be good. Some of the questions they will ask will be from information picked up on the internet and others will be from information obtained from others. We need to make sure that we can understand what the parents are thinking, what the underlying questions are, and where they are emotionally so that we know what kind of information we can provide for them.

 

Kinds of questions

Many parents want to start with the business issues and emotional issues are moved to the sidelines.

  • Medical issues – type and degree of hearing loss, and medical treatment.
  • Audiology diagnosis – Functional effect of hearing loss on auditory brain development, what can the child hearing with and without hearing aids, what does she understand. Parents will likely not understand that hearing aids do not “cure” the hearing loss and the child may not hear normally with hearing aids
  • Technology issues – How do hearing aids work. The need to use them every waking hour. Are hearing aids the right technology, do we need baha’s or cochlear implants.
  • Therapy – what kind, how often, where. Will therapy be enough? Do I have to provide therapy at home?
  • Emotional issues – how do other families deal with this? How do I deal with family members who do not accept the hearing loss? Do I need therapy to deal with my issues?
  • Meeting other families – is this a good idea? How can I meet other families?
  • Long term performance of children with hearing loss
  • Other appointments – genetics, ophthalmology, other
  • How does all this get paid for?

 

When parents don’t ask the questions

Parents may not ask questions related to the topics listed above. They may not ask because they don’t know to ask or because they are embarrassed and afraid to ask. We, as clinicians, need to be aware that all these issues need to be discussed with families to help them maximize auditory and language development for their children. If families do not ask these questions, we, as clinicians, need to find a way to bring the topics up, and offer families the opportunity to discuss them and to ask questions. This is ongoing. Families may be able to ask questions in the early weeks, and as time goes on, new questions will come up or questions previously discussed will need to be revisited. It is absolutely critical that time be allowed at each and every appointment to allow time for discussion. We also need to be certain families feel that we are ready to listen to them and to answer their questions. This is best done if we are sitting facing them, not standing in the doorway clearly looking like we need to run off. I get that this is difficult. Time is always an issue in any clinic. But in my opinion, it is critical if we are going to help kids with hearing loss be the best they can be.

I had the good fortune to spend last week doing workshops in different cities in Norway for Phonak. I got to meet lots of interesting people and, as always, I learned as well as taught.

 

One of the exciting things was that in Norway, technology is a given. Both children and adults are allowed whatever technology they need, paid for by the government. Children can have whatever they need, including as many pass around mics as necessary. In fact, school personnel were telling me that, for children with hearing loss to hear what they needed to hear, there should be one pass mic for every two children in the classroom. WOW!!! In the US we consider ourselves lucky if we get one pass mic and here they receive as many as they need!

 

Since pass mics were so plentiful, I got to use them. I have a relatively mild hearing loss through 2000 Hz with a severe high frequency drop. Not bad at all compared with the children I work with. So here I am in a situation where there is a plethora of technology. The nice people at Phonak set me up with multiple mics so as we sat and talked in a group, each person was wearing a mic. I could not get over how much easier it was for me to listen. No strain. Me, who has been pushing FM for as many years as there has been FM had never had the opportunity to listen using multiple mics. It changed my attitude.

 

What should we be pushing for in schools?

There is a lot that children need to succeed in school but let’s just discuss technology. I am pretty sure that no one questions that children need FM in school. We know that schools are very noisy places and that, no matter what we want to do, we cannot completely control signal to noise ratio. There are two ways to improve listening. Positioning and using remote microphones. Positioning means we need to be sure that children are very close to the person talking. In a noisy place that would mean I want to the child to be within a foot or so of the talker. Not likely to happen in any classroom I know of. So we need to use remote microphones. Children need to hear the teacher to get new information. Teacher needs to wear a remote microphone.

 

Do kids need to hear anything else in the classroom? YES!!! Children need to hear other children. The questions and answers other children make during discussion is a critical part of learning. Even wrong answers tell you important things. In addition, classroom work is becoming more and more collaborative. This means that children need to hear each other in small groups. How are we going to assure that children hear other children?

 

Please please please use pass mics

I confess to being tired of arguing with school districts about the need to do what needs to be done to get kids to hear. Please close the classroom door. Please close the windows, especially if it is noisy outside. Please check HVAC to avoid excess noise. And PLEASE USE PASS MICS.

 

Children have soft voices. They do not accommodate for those around them. Adults may be willing to increase volume when someone has a hearing loss not children do not and cannot. We need to provide them with technology so that they can provide access to their peers with hearing loss. EVERY CHILD WITH HEARING LOSS NEEDS A PASS MIC IN THE CLASSROOM. At least one, but let’s start with that.

 

The talking stick idea

Native Americans use the talking stick concept when them have meetings. We can do this in classrooms. Only the person with the pass mic can talk. When children are old enough they can pass the mic around themselves. I have seen some classes in which one student was assigned to carry the mic around the room and hand it to the child who was talking. This teaches several things – respect for those who are talking (since we cannot interrupt) and helps children attend to others.

 

Teaching about hearing

I wish there were a way in which we could teach parents, teachers, and other school personnel about the value of using a pass mic, to help them understand what a child is missing if they do not hear. I understand that it is definitely a little difficult to have to control extra technology but isn’t it worth it? If we do not teach children to listen we are courting academic failure. We do not have the right to deprive children of the ability to hear in the classroom. In fact, just the opposite. We have the responsibility to assure that they do hear.