One of my grandsons was born deaf. Although there is no history of deafness in the family, my daughter’s doctor said that her son’s condition is probably genetic. Can you explain?
This is a great question, since it is often believed that if something is genetic it has to be “running in the family.” Most parents, and even some health professionals, are surprised to learn that 50% of hearing loss has a genetic basis. However, a child can have a genetic-related hearing loss even if no one in the family has hearing loss. Therefore, it is very important that parents, like your daughter, follow through with referrals to a clinical geneticist—even as they are addressing their child’s hearing and communication issues. Learning more about the cause of your grandson’s hearing loss can help doctors understand the complete picture of his health. Most children with hearing loss do not have other health problems, but a few do. A referral to a genetics doctor may help find these problems so that your daughter and her family can make the best possible decisions about your grandson’s healthcare.
A new brochure, Hearing Loss, Genetics and Your Child has been designed both to connect families like yours with genetics professionals, and to prepare them for a genetics appointment. The brochure also answers other questions families may have, such as who will pay for genetic testing, and contains basic facts on genetics-related hearing loss. The brochure was developed by a team of medical geneticists, genetic counselors, audiologists, parent advocates, and health science information specialists led by Kathleen Arnos, PhD, FACMG, Professor of Biology and Genetics Program Director at Gallaudet University in Washington DC, whose career has been devoted to understanding genetics and hearing loss. It is being distributed by the National Coordinating Center for the Regional Genetic and Newborn Screening Services Collaboratives (NCC), housed at the American College of Medical Genetics (ACMG), which funded its development.
Hearing Loss, Genetics and Your Child is available in printed and downloadable pdf formats. It is written in layperson’s terms and is available in both English and Spanish. It can be accessed electronically at no cost at www.nccrcg.org under the “Resources” tab. If you have any further questions about the hearing loss brochures, or would like to connect with the National Coordinating Center, you can contact either Matthew Tranter (email@example.com) or Judith Benkendorf, MS, CGC (firstname.lastname@example.org) or by calling 301-718-9603.
Is it essential to address hearing loss before a child reaches the age of seven years?
Absolutely!! The ideal age for addressing hearing loss (effective parenting techniques, effective exposure to language, consideration of assistive listening devices, etc.) is from birth. Recent research has demonstrated that when deaf children are identified and receive early intervention services within the first six months of life, their language abilities are much more likely to fall within the normal range for hearing children by the time they enter school. Strategies for ensuring effective access to language, supporting social-emotional development, and all of the other issues noted above are essential as early as possible in order to ensure normal development…and providing them after the age at which hearing children are starting to aquire language definitely is not “normal.”
All of that said, “better late than never.” If those early opportunities have been missed, the situation calls for even more vigorous, concerted efforts by all involved.
I have a daughter that has a bilateral severe to profound hearing imparement. She is a well adjusted child socially and does not see herself as different. This confidence that she puts out gives most adults and teachers the impression that she is a normal hearing child. She is behind grade level but when prompted she is at the second grade level and is not the lowest in her grade. The teacher does not recognize that it may not be that she doesn’t understand the concepts but that she has difficulty expressing her answers in the written and spoken language. She is the only case within the district and therefore I am not sure that the district and teachers have taken the time to make themselves aware of her learning abilities and how to evulate them. She has the services of a TOD this year and has in the past but I don’t feel they are using her in the right areas at this time. She also gets a Signs Skill Couch but she is not used to the best of her ability either, the teacher seems very intimidated by having another person in the room that has some control of teaching, even if it is only my daughter doing it. I am looking for an easy way to explain my daughter, her learning style and ability of understanding. I am not sure that they get how her hearing imparement affects the other areas of her life. She does not have that distinct tone to her voice as most hearing impared people do. It is not understood why she sounds normal but that allows others to assume she is normal.
What is the easiest way for me to present my daughter to others so that they can begin to understand her difficulties and hearing abilities?
Here are two resources that provide audio for what different degrees of hearing loss “sound” like. It would probably be helpful for your daughter’s teachers to listen to the simulations so that they can experience the degree to which your daughter is missing out on the speech occurring in the classroom.
In addition, it would probably be helpful for the Teacher of the Deaf to put together a resource packet for the classroom teachers about what to expect from a child who is deaf during classroom instruction. You can actually ask the school district to write teacher training by the TOD into your daughter’s IEP, making it a requirement for those teachers working with your daughter to attend the training.
Another suggestion is to develop a profile about your daughter based on YOUR vision of your daughter and how she functions and works at home and in school to personalize her situation to those teachers. Include pictures and anecdotes, almost like a scrapbook, to connect them with your daughter and her needs.
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.
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.
What is the impact of congenital hearing loss on a child’s ability to learn like other youngsters? I have read that deaf pupils don’t do well in school, at least not as well as hearing pupils. How do I help my deaf child learn like those who are hearing?
On the basis of recent evidence, I would suggest that your question might be a bit off target. A variety of studies has indicated that deaf children, in many ways, do not learn like hearing children because of differences in their knowledge, experience, and learning styles, as well as possible issues of language and communication. This work is still ongoing, but it might explain why deaf children – regardless of whether they have deaf or hearing parents – typically do not show academic outcomes comparable to hearing peers.
Even minimal hearing losses have been found to have effects on children’s reading and other academic performance, likely both because some information is missed but also because differences in perceptual input and information processing really do result in differences in the brain and in cognitive activity (such as memory, problem solving, understanding categories and relations). These differences need not be seen as deficiencies as long as we understand them and match formal and informal educational methods to them.
Without giving you a very long answer, the question you are probably asking is a can you optimize your child’s academic activities. There appears to be no doubt that the most important ingredient there is you. Parents’ involvement in their deaf children’s curricular and co-curricular activities has been found to be associated with literacy skills and other academic outcomes, as well as personal success. Informal conversation with your child and reading with him/her are two of the most important things you can do.
I suggest you have a discussion with your child’s teacher and/or others involved in educating deaf students in order to determine what activities would best utilize your child’s strengths and help to build on any weaknesses.
A new book for teachers and parents on this topic is due out in the next year or so; in the meantime, you might want to look at Marschark, M., Lang, H.G., & Albertini, J.A. (2002).
We are thinking of getting our deaf 10-month-old a cochlear implant, but I have read on several online blogs that our child will be ostracized by the Deaf community. I don’t think that’s a problem because with the CI she will be mostly hearing, but what if later on our daughter wants to interact with other deaf people do you think that they will not accept her because of the CI?
Since you didn’t ask, I won’t address your point about her being “mostly hearing.” I should point out that the evidence is not yet in on the extent to which children with cochlear implants generally are socially integrated with hearing peers. There are anecdotes covering the full range of possibilities, but data are hard to come by.
With regard to interacting with Deaf people (the capital D indicating those who see themselves as part of a linguistic-cultural minority), two points: First, by the time “later” arrives, cochlear implants will be so common that it will not be an issue. Second, even now, the Deaf community is far less scandalized by cochlear implants than they were 10 years ago. Many Deaf adults are now getting cochlear implants themselves as well as for their children. With the surgery now far less risky than it used to be, insurance companies (and socialized medicine in other countries) covering the costs of cochlear implantation, and the wealth of evidence indicating that most deaf children to write some benefit from cochlear implants, they’re coming to be seen much more as just high-tech hearing aids.
It’s true that there is still strong opinion out there on blogs although, interestingly, much of it is coming from hearing people, not Deaf people themselves. The first priority is your child’s personal and academic success. You might want to get in touch with the parents of some older kids who have had their cochlear implants for a fairly long time and get their perspective (see our Partners page), but my experience is that the Deaf community is welcoming and very comfortable with diversity.