Readers’ Choices 2014: Parents Need Accurate Information

Dear Readers:
During this holiday season, the editors at Hearing Health & Technology Matters (HHTM) are taking some time off. However, we are not leaving you without anything to read on our blog this week. Instead, we are publishing a special holiday edition filled with what we call our Readers’ Choices.

HHTM has had more than half a million page views in 2014, and the Readers’ Choices featured this week are the posts published on each of our individual blogs that drew the largest number of viewers during the year.

Whether or not you have read these Readers’ Choice posts before, we think you will enjoy them.  And be sure to return next week when all of us editors, our batteries recharged, will publish a New Year’s Eve issue filled with fascinating new posts to get 2015, HHTM’s fifth year, off to a great start.

 

I just returned from the EDHI (Early Detection of Hearing Impairment) Conference in Jacksonville, Florida. It was the first EDHI meeting I attended so I was unsure what to expect. The meeting is attended  by representatives of state early intervention programs and by professionals who work with early intervention. The professionals include speech-language pathologists, auditory-verbal practitioners, audiologists, teachers of deaf and hard-of-hearing children, psychologists, social workers, administrators, and parents. This sounds like a plan for a great meeting.

When I entered the hotel lobby I was a little surprised to see a lot of deaf adults signing with voice off. It’s been a long time since I have seen that at a meeting. I expect a lot of signers at meetings like the National Association of the Deaf or similar organizations, but this meeting was primarily for issues relating to infants and pre-schoolers. I was surprised.

 

It’s Not the Same Old Deafness

I have been a pediatric audiologist for almost 50 years. Things have changed dramatically since I started. When I began, technology was not terrific. We had hearing aids, but they were not very powerful. We fit little kids with body aids because the BTE models were so big we couldn’t get them to stay on the child’s head. The hearing aids we had worked well for kids with mild to moderate hearing loss, but not so well for kids with severe and profound hearing loss because they were just not very strong. In addition, there was a lot of distortion.

Things have improved a lot since then. We have powerful hearing aids that provide sufficient gain to work for kids with severe HL, and are a good start for kids with profound HL until they get cochlear implants. We have FM systems, which we did not have when I got started, and, of course, we have cochlear implants!!! Now we can say that almost every child with hearing loss should be able to hear with appropriate technology. (The exception is children without a cochlea.)

Second, newborn hearing screening is identifying babies with hearing loss at birth. In the olden days when I started in this field we considered babies identified at 18 months to be early identified. Now the standard is that babies who fail newborn screening should receive a diagnostic evaluation by 3 months of age and begin intervention by 6 months. (In my mind, this is still too late since babies can be identified at birth, but that’s another story.) Since babies are identified early now, they do not get “delayed.” We begin working with them immediately.

Finally, we now know that auditory brain development requires auditory access and we know that only appropriately fit technology will permit appropriate brain development. Children who use a visual mode first will not be able to fully develop their auditory skills at a later date.

 

How Has All This Changed Parental Decisions?

Let’s remember that 95% of deaf kids are born to parents with normal hearing. They communicate using spoken language. When we ask parents what their goal is for their child, 85% of parents report that they would like their child to listen and talk.  This is a big change from the situation before newborn hearing screening. Then about 40% of families chose sign language and the rest chose auditory-verbal, auditory-oral, or cued speech. It is clear that the world is changing. Many schools for deaf children are closing or becoming smaller as more children get mainstreamed. More and more parental support exists so families can have the energy and know-how to do what’s needed to help their children succeed.

 

What is the Role for Sign Language?
There is and always will be a place for sign language. It does make communication easier in noisy situations and when you are not wearing technology, but is it what we want as the primary communication mode for infants and children currently being identified with hearing loss? In my mind, parents who choose listening and spoken language are making the right decision. With the technology available today, deaf children can hear. Therapy is available to teach families how to help their children learn, and schools are helping children be successfully mainstreamed.

If deaf children can communicate using listening and spoken language the way their peers do they have limitless opportunities. If they cannot, their choices are limited. Children who only sign have fewer employment choices and fewer social opportunities. Some children who communicate using listening and spoken language will learn to sign as teenagers or young adults, but the data is clear that children who learn sign first will not be as successful using listening and spoken language later because the auditory portion of the cortex will not develop as fully.

 

What Upset Me at the EDHI Conference?

At the EDHI meeting I saw a parent who was considering cochlear implants surrounded by signing adults who were telling the parents that they were going to damage their child by giving her an implant. (She was crying.) I heard one presenter report that it takes at least 2 years to learn to hear with a cochlear implant and that during this time the child will have no language. (This is definitely not true. Children will start hearing when the CI is turned on, but just as with typical hearing children, it will take a lot of listening to learn to use the information.)

I heard a presenter report that the only way a child can learn to read is through sign language. In fact, the average reading level for children who graduate from schools for the deaf is third grade.

 

Parents Need Correct Information

Parents must make very difficult decisions when their child is identified with a hearing loss. They need to make an educated decision about the choices for their family. Some choose listening and spoken language and others will choose signing. But parents need to have honest information to make those decisions. I understand that there are people who believe strongly that signing is the appropriate method to educate deaf children. That is fine. They should explain to parents why they believe that signing is the right choice. But that information should be based on current evidence – not on what might have been true 20-30 years ago.

 

 

About Jane Madell

Jane Madell has a consulting practice in pediatric audiology. She is an audiologist, speech-language pathologist, and LSLS auditory verbal therapist, with a BA from Emerson College and an MA and PhD from the University of Wisconsin. Her 45+ years experience ranges from Deaf Nursery programs to positions at the League for the Hard of Hearing (Director), Long Island College Hospital, Downstate Medical Center, Beth Israel Medical Center/New York Eye and Ear Infirmary as director of the Hearing and Learning Center and Cochlear Implant Center. Jane has taught at the University of Tennessee, Columbia University, Downstate Medical School, and Albert Einstein Medical School, published 5 books, and written numerous books chapters and journal articles, and is a well known international lecturer.