Raising and Educating a Deaf Child

International experts answer your questions about the choices, controversies, and decisions faced by the parents and educators of deaf and hard-of-hearing children.

Question from Stacie F., Avon Park, FL

My son was born premature and has auditory neuropathy (AN). He is now six years old and in the first grade. If you walked up to him, he could hold a conversation with you and you probably wouldn’t even know it. But he is having trouble in school. He currently uses a FM System. We are unsure if it is beneficial for him. I have found very few people who know a lot about AN and have been very frustrated as a parent. I am a teacher and work with my son a lot at home. He can produce all of his letter sounds and is starting to read. Some of the question that his teacher and I have are: How do we get him to let us know when the fm system is not working? How successful has the FM system been with other children with auditory neuropathy and how can we tell if it is beneficial to him? Do all children with AN have a short attention span? Every time my son has gotten tubes we have noticed a big difference in his behavior and hearing. Heonly has one tube in at this time because the other could not be put in. He has not had any ear infections, but can having tubes help his hearing in any way? He also gets very frustrated and aggravated over the simplest things and this behavioral get worse we he is not hearing.

Question from Stacie F., Avon Park, FL. Posted November 19, 2009.
Response from Linda Spencer - State University of New York at Geneseo

First, a brief description of auditory neuropathy (AN) for those unfamiliar with it:  Auditory neuropathy is to find clinically as any hearing loss, ususally present in both ears, in which the outer parts of the auditory hair cells seem to function normally, but the electrical characteristics of the impulses put out by the hair cells are abnormal.  Current thinking is that either the inner part of the hair cells do not work correctly or perhaps that the synapes (the point of information transfer) between the hair cell and the auditory nerve do not work correctly.  So, people with AN have decreased ability to perceive and understand speech with functionally hearing losses from mild to profound.

Babies born prematurely, or who have too much bilirubin (from breakdown of red blood cells), or those who have to take some antibiotics that are toxic to the auditory nerve have a higher incidence of AN. For children with profound hearing losses via AN may receive cochlear implants, and in general those children perform in a similar way to a child without auditory neuropathy who has an implant (there is a lot of variability in how well CI kids do).  In your son’s case, you do not mention how much of a hearing loss he has, or how well his speech production is, but you say he is able to name letters and is beginning to read.  You also mention he wears an FM system. These pieces of information lead me to believe that he has acquired oral communication and this is an excellent sign.

The idea of using an FM system, if he relatively good hearing thresholds, is to decrease the distance between the source of the sound and his ears in order to decrease sound interference, and make his listening conditions “easier” or less taxing. In order to get him to be consistently able to report when his FM system is not working, I would start by having “checks” several times a day.  Before the check, see if he can tell you whether it is working GREAT, OKAY or NOT SO GOOD. Then have the teacher, speech pathologist, aid etc. produce these “Ling sounds,” (ah, ee, oo, sh, s, and mm), one at a time, while standing beside him, so he cannot lipread.  After each sound is produced, see if he can identify the sound.  The goal is that he will become an accurate “reporter” of how well he is hearing with the system.  You will know it is working if he seems to be less frustrated or less “taxed” by listening when he is using the system.  Think of it this way: Have you ever been to a talk where the speaker is at the front of the room and you are in row 20, but the people in front of you in row 19 are talking, whispering and laughing.  You are desperately trying to make out what the speaker is saying but you need to listen with all your might.  This is akin to what your son must do all day long.  Even if the FM sytem is delivering the speaker’s voice right to him he still has to listen very hard and concentrate every listening minute of the day.  It very well may look as if he has attention problems.

It is hard to parse out whether the issues are attention related or fatigue related, but fatigue seems most likely given your descriptions of his increased frustration when he has ventilating tubes in place.  If he has fluid in his ears, this can make his hearing worse…for example a whisper that he could normally hear when he has no fluid, would need to be presented quite a bit louder even for him to pick up the sound.  In summary, you have a little guy who is working twice or three times as hard all day long in order to decipher what is said, and he is going to need more “breaks” or down time.  I would suggest frequent breaks, small class size, extra tutoring, and shortened assignments when needed if he is slower to finish.  In addition, his teachers will always need to receive training so they can see how to speak with “clear speech” (slightly slower, more pauses, and with clear articulation …think of President Obama as a good model of clear speech). The teachers will also need to understand that he has to watch them talk and that he may benefit from speech-reading them. If they are giving directions while they are facing the board, or from a side view, he may have a harder time.  With time his educational team and your son will begin to recognize the signs of  fatigue, when needs a break and when he is doing well.