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.

Cochlear Implants and Hearing Aids

I am living in India and fostering a 6 year old boy who has 95% hearing loss. He used to live in an orphanage and came into my foster care in July. Prior to this no one noticed that he was deaf. I want to look into getting cochlear implants for him, but have been told that because of his age and that he has gone 6 years having no auditory input, the CIs won’t work. Thoughts?”

Question from N.C., India. Posted October 30, 2013.
Response from Linda J. Spencer

Amazing that this child went six years until his hearing loss was discovered. This used to happen more than we would like to admit here in the United States, but thanks to newborn hearing screening we are usually able to diagnose hearing loss much earlier now.

Several things that make me curious relate to whether or not to pursue the option of cochlear implantation. I am curious as to whether this little guy has any vocalizations and how he makes his needs known. Do you have a sense whether he is bright and learns quickly? The reason I ask this is that sometimes children who are quick learners are able to slide under the radar and perform well in many arenas and their hearing loss gets over-looked. Alternatively, children who have multiple developmental delays in motor skills, learning, self-care, and if they have a lot of health issues as well, their hearing loss goes undetected as other health issues are the focus of intervention. I am also curious as to whether he ever had some hearing. If he does have the ability to vocalize he may have had hearing at one point in time.

First of all, I think you need to assure that this boy has access to language. As a child with profound hearing loss without amplification/implants he will need to have access to a signed language so that he can learn to communicate with the world. At this point, access to language (sign) is a main priority. In addition, I would also encourage you to advocate for a cochlear implant evaluation. He may indeed be a wonderful candidate. We know that children who learn quickly, who have had hearing, who have support to learn to listen and who are exposed to speech consistently will learn to produce the sounds of their language and within 4 years of CI listening experience, they may be able to produce a majority of the sounds, even if they get a relatively late start.

I am a Teacher Consultant for Deaf and Hard of Hearing Students. I have a parent who is interested in purchasing a neckloop for her daughter who has a bilateral hearing loss and utilizes hearing aids. The parent was wondering if there is a source for reading reviews on neckloops or other equipment that an individual with a hearing loss may benefit from, before purchasing something, as the equipment is not cheap.

Question from J.O., Indiana. Posted October 24, 2013.

Assistive listening devices are an excellent augmentation to hearing aids for many children, however there are many options and it’s important to select the right one.  The parents’ first step should be to consult with their daughter’s clinical or educational audiologist.  The audiologist can determine which types of neckloops or other technology are compatible with her current hearing instruments.  The audiologist can also help select a type of assistive device to best match her needs.

Prices can range from $40 to several thousand dollars for different types of technology, and it may not be necessary to spend a lot of money.  Conversely, if the parents decide to invest in a more expensive system they should be sure that the system will work with their daughter’s current and possibly also future hearing instruments.

Some types of technology can only be purchased through an audiologist or hearing aid dispenser.  Others can be purchased by the consumer directly.  If the neckloop is purchased independently, there are often user reviews on the vendor’s website such as Harris Communications (www.harriscomm.com).  Another vendor with useful reviews and an informative newsletter is Beyond Hearing Aids (http://www.beyondhearingaids.com).

A wonderful resource for parents is the Hearing Loss Association of America (www.hearingloss.org), a non-profit support group for those affected by hearing loss.  Their website has in-depth information about assistive technology and offers special support for parents.  The online forums offer an opportunity for the parent to ask questions directly to other parents and benefit from others’ experiences.

Hi. I’m 13 years old and I need some advice. I am not deaf my hearing reads 70-80 db. I’ve been advised to get a cochlear implant, but I prefer to stick with my hearing aids. I need you to tell me which is better in terms of sport,school,long term, and not letting your friends know. Thanks.

Question from D.S., United Kingdom. Posted September 15, 2013.

Hi. First of all, you are pretty amazing for thinking so hard about your options and for getting advice about a very big decision.  I admire your courage and wisdom at such a young age!

People who have had hearing aids are advised to get a cochlear implant if  their aided hearing abilities make it such that they are really struggling to hear words and sentences when they are using the best hearing aids in the best situations.  Sometimes a hearing loss is progressive, meaning it gets worse and worse and in this case a doctor my recommend a cochlear implant.  We think that by stimulating the hearing nerve using the cochlear implant soon after the hearing is lost, this can help the person maintain their memory of sounds so they can keep their hearing skills.

It is really hard to guess why you have been given this recommendation without knowing if it’s from your doctor, family, or friends.  You are right to ask a lot of questions at this point.  There is no clear answer of what is “better” in terms of sports.  With a CI, we tell people to avoid sports that can give a high risk of banging your head into something (like American football or hockey) but I have known people who participate in these sports who use CIs and they are very successful. Some of the new CIs allow you to get the CI a bit wet, and some even let you swim with a CI.

As far as school goes, a CI may help you with listening and understanding teachers other pupils in class.  You would need time to adjust to the new “sound sensation” of the CI, and this is something to consider.  In the long term, this IS a big adjustment and as I said it is a big decision.

I am really curious about your very last words of “not letting your friends know.”  Are you concerned that your friends will be upset if you choose a CI over a hearing aid…or the opposite?  Or are you concerned that your friends don’t understand about your hearing loss in the first place?  Might you feel comfortable explaining your choices to one good friend?  It can be really helpful to have someone to talk with.

At any rate, I really wish you the best with this very big decision.  I think you are doing the right thing to ask a lot of questions to a lot of professionals.  In the end this is your PERSONAL decision, and as long as you feel comfortable with what you decide, that is the right thing.

I am a mother of two profoundly Deaf children who have unilateral cochlear implants and have full access to NZSL as I am an interpreter and my husband is Deaf. My daughter, who is 3, has very strong spoken language skills and reasonably good sign language skills. I see her tendency is to use spoken language more dominantly. I want to know if there is any experience and research of educating children in both languages fluently and in what ways have been successful. I often use a form of sign-supported English when reading, but lately I notice she is not watching my signing. I have switched to separating the language and only using English or only using NZSL but when I just use NZSL she complains and wants me to use spoken English. I would love to have access to any literature in this area to help me navigate and teach 2 languages to my children.

Question from E.K., New Zealand. Posted August 16, 2013.

Unfortunately, there does not appear to be any research literature about this issue. What we know from observations and teacher reports concerning students in our bilingual programs is that this situation is not at all unusual among deaf 5- and 6-year-olds with cochlear implants. At first, they seem to start using fewer signs productively themselves, and later they ask hearing and Deaf teachers to switch on their voices when communicating with them. Why? We don’t know. Our speculation is that this reflects some kind of an evolutionarily-determined drive for multimodal perception. However, we also don’t know whether this is a temporary situation or whether the children “grow out of it.” There clearly is a need to collect more observations by parents and teachers as well as to conduct systematic research on the issue which may have long-term implications for academic outcomes, social-emotional functioning, and cognitive development.

Recommended reading:

Knoors, H. & Marschark, M. (in press). Teaching deaf learners: Psychological and developmental foundations. New York: Oxford University Press.

Watson, L., Hardie, T., Archbold, S., & Wheeler, A. (2008). Parents’ views on changing  communication after cochlear implantation. Journal of Deaf Studies and Deaf Education,   13, 104-116.

My daughter is 15 and profoundly deaf. She is not oral and has fluent and excellent sign language skills. She has a cochlear implant but it doesn’t work for her – epileptic activity has damaged the area of her brain that processes sound. She began to sign at 11 months. Her mainstream high school has an integrated deaf facility and she is doing very well at school. It has become apparent that there is an issue with reading/writing/comprehending English – I want to find out what it is and how to help to overcome it. My daughter is very keen to improve as she has academic ambitions. I have made several enquiries but have not been able to find out who to consult. The usual avenues are not set up for testing through sign language.

Question from D.N., Australia. Posted July 17, 2013.

Your email emphasizes that contrary to what parents might believe, cochlear implants are not appropriate or necessarily useful for all deaf children. Most do benefit, but outcomes are quite variable (and often unpredictable) due to the large individual differences among deaf kids. As much as we would like to think so, there are no “silver bullets” in raising and educating deaf children. However, there are a variety of alternatives that can be helpful in situations like yours. In Victoria, contact the Victorian Deaf Education Institute in Melbourne at vdei@edumail.vic.gov.au. The Student Well-Being Division has the resources and contacts to assist you. In New South Wales, contact the Royal Institute for Deaf and Blind Children online@ridbc.org.au.

My husband and I adopted our fourth child at age 3.5 from Eastern Europe. He had virtually NO language other than pointing, and indicating if he was happy or sad. The orphanage that we adopted him from reported that they did not realize he was profoundly deaf until he was 3 years old. He had never had any speech therapy, preschool, or early Intervention. Once he was part of our family, through much testing, we confirmed that he was profoundly deaf in both ears. He was fitted with hearing hearing aids, and at age 6, due to concerns for safety, he received a cochlear implant, and continues to wear one hearing aid. Our son is an absolute joy, and makes our family complete. He is now 7 years old, and has learned SO much. We use Total Communication both at home and at school. He is in a first grade class, with most academics taught in a self-contained HOH classroom, and spends part of the day in the “regular education class.” Socially, he is mostly like other 7 year old boys: fun-loving, action-packed, into sports and playing outside. Academically, he is still at a pre-school/kindergarten-ish level, and his receptive and expressive language is severely delayed. He talks and signs, but the majority of his words are not understandable. He mostly uses ASL/Signed English to communicate. Our major concern for our little guy, is, that his school is VERY focused on how behind he is language-wise, and academically (which he is). However, it is very difficult for them to see how far he HAS come in the four years we have had him. We don’t know any other families that have Deaf Children, that had NO Early Intervention, that were adopted internationally, and have the extreme language delay that our son has. We feel like we don’t know how to advocate for him at school, have high/yet acheivable expectations for him. All the literature that we find talks about how very important early Intervention is….but our child was not given that, and it was not in our control until he came to us. How do we provide him the most support possible, and help to increase his global language. His language delay is obviously impacting how much he is able to take in/learn at school. But we don’t know how to “hurry language along” for him. He gets “speech/language” 5 days a week at school…and we constantly talk and sign at home. It just doesn’t seem to be enough. Does he need some type of intensive therapy?

Question from R.B., Somewhere, USA. Posted April 26, 2013.

From what you have written, it really looks as if your son is thriving being in a loving home and has developed a way to communicate in a social way.  You are correct about him getting a “late start” with regard to his exposure to consistent language, listening, and speech.  When we, as professionals, begin working with children who are “budding roses,” I like to think that we all look at “potential” for blooming, and it is fairly common and appropriate to look at how much progress he makes over time, now that he is in a consistent educational environment.  We hope to see one year of progress from where he is, for each year of experience.

He is currently in the mainstream classroom, and in a HOH classroom.  What I cannot get a real feel for is how consistent his language input is within each modality.  If he is getting a “total communication” philosophy, I worry that he may not be getting immersed in language consistently.  It looks as if that is a concern from his educators.  I typically am an enthusiastic advocate for total communication, but given his late start with language exposure, combined with the question of how much he was able to hear even after he had hearing aids, I feel more compelled to be sure he gets immersed in a consistent, accessible language system.  Given this, I wonder whether you have considered a school for the deaf?  Is there one close to you? Is there an intensive summer program that uses American Sign Language?  I am asking this because I would be really curious to see how fast he picks up on a completely accessible language system when he is immersed in it.

While I am not abandoning speech and listening, I do think that we need to temper expectations a bit with regard to his potential to be an auditory learner given we can only verify that from age 6 on he is getting consistent access to sound via his CI.

As a first step, try contacting Hands & Voices (www.handsandvoices.org) or the American Society for Deaf Children (www.deafchildren.org) to find other families with deaf children in your area. Talking with other parents who have had similar experiences will be immensely helpful.

I am working with a preschool student who has bilateral cochlear Implants. His audiologist is recommending an FM system for him. What is the appropriate funding source? The County or the school district? Neither party accepted responsibility for this at the CPSE meeting. Can you refer me to some documentation of the regulations for this funding?

Question from M.W., New York. Posted April 26, 2013.

For this, you will want to contact the New York State Regional Associate for Preschool Education: http://www.p12.nysed.gov/specialed/quality/regassoc.htm. You are probably best off contacting the Western Regional Office directly by telephone:

NYS Education Department
P-12: Office of Special Education Special Education Quality Assurance (SEQA)
2A Richmond Avenue
Batavia NY 14020
Telephone: (585) 344-2002 — Fax: (585) 344-2422

If you have any difficulties, the Upstate Coordiantor is Christopher Suriano, (315) 476-5645.

Is cochlear implantation useful for all profound hearing-impaired students?

Question from D.D., India. Posted January 22, 2013.

Even at their best, cochlear implants do not change deaf children into hearing children, but they do help most children with profound hearing losses (in most countries, cochlear implants are available only to children with profound hearing loss). Importantly, there are large individual differences in outcomes among children who receive implants, and we are not very good at predicting outcomes for individual children. However, there are several factors that are associated with greater benefits:

• length of time since implantation (shorter is better)
• age at implantation (younger is better)
• degree of hearing loss (both in the implanted ear and the other ear)
• age at onset of hearing loss
• amount of language when hearing was lost
• parental support for the child and postimplant therapy
• children’s cognitive abilities, and
• the amount and types of postimplantation therapy received.

Some of these factors affect the level of performance achieved while others affect the speed of acquiring various skills, and both vary across children. An otolaryngologist (ear, nose, and throat doctor) and/or cochlear implant surgeon needs to give a child a complete examination before making specific recommendations and predictions of success. For more information, see Chapter 2 in Marschark, M. (2007). Raising and educating a deaf child, Second edition. New York: Oxford University Press.

I work with a deaf CI student with a cognitive (FS IQ 67 WISC-IV), as well as a speech and language disability. While we continue to work on phonological awareness skills and some phonics while reading, the student is proving to be mostly a sight word, or whole word, reader. This student is reading at the 1st grade level and has a sight word vocabulary of about 85 words. I am looking for a reading series or curriculum that would fit the student’s needs for a very pragmatic reading program which will build knowledge, language and vocabulary of common social and community content. The Edmark nor Milestones are a good fits, nor is the Fairview. The student (an “Only”) has some receptive sign skills, but is primarily oral.

Question from K.B., Vermont. Posted January 14, 2013.

In working with schools to implement phonics-based reading curricula with a variety of learners who are deaf or hard of hearing (including those with additional disabilities), I have found that some students initially struggle with understanding the abstract nature of phonology and benefit from starting with a sight word approach. A curriculum we have used in these cases is the PCI Reading Program. This research-based program contains three levels, the first teaches 140 basic sight words (primarily nouns and verbs) and the second focuses on an additional 140 more complex, sight words (compound words, inflectional endings) and introduces beginning letter-sound relationships. Finally, the third level bridges to a phonics-based approach. To learn more about this curriculum, I would recommend visiting the company’s website, which provides detailed information about the approach, a nice overview video, and a link to order sample lessons. http://www.pcieducation.com/reading/lvl1.aspx

I am from Turkey. My son has autism and was born with a profound sensorineural hearing loss. He was implanted at 5 years of age. He is now 12 years old.. He cannot speak or write. It seems there isn’t anybody else like him in Turkey and I cannot get any assistance in dealing with his multiple challenges. I want to teach him speak. How can I do that? How can I help my son?

Question from M.Y., Turkey. Posted September 27, 2012.

I am sorry to hear that you have not been able to access help for your son that you feel has been useful. Certainly deafness and autism each present their own challenges, but together things are much more complex.

Autism alone is associated with language impairments that are often quite significant. Many hearing children who have autism develop only very limited speech, and some only sounds, with no functional speech. The focus for these children should usually be on communication, not speech. This means trying to build communication of any kind, including gestures, manual signs, picture systems, as well as  speech — basically anything that allows the child a chance to communicate with the world around him. And an important part is trying to motivate the child to want to or need to communicate.

Your son also has a profound hearing loss. That is also by itself a high risk factor for acquiring speech. A cochlear implant may make speech sounds more available to him. But even if that were the case, he still may be affected by the language disorder I mentioned in connection with autism. So many, many questions remain that will impact on your son’s ability to speak and to write.

So the situation is complex. But does that mean there is no hope? Absolutely not! With appropriate and consistent support, most children make significant gains in many areas. If it has not already been done recently, I would recommend having an assessment done of your son’s intellectual, language and daily living skills, so you can understand where his skill levels are currently. Then try to find someone who can provide a program of systematic behavioral therapy, with a special focus on communication in as many activities as possible.

I don’t know the availability of services in your area, but hopefully a physician might know of available services, or the professionals who did the implant, or perhaps if there is  a university in your area. Did anyone provide you with support after the implant? That person may also be able to help connect you with services. Two sources that I am ware of online are:  The Tohum Foundation   http://www.tpfund.org/TOHUM/default.asp and The Gunsigi Services  http://www.gunisigichildtherapy.com/cigdem-ergul.php

Both, I believe, are in Istanbul, but hopefully they can connect you with services where you are located. The Tohum Foundation indicates their ” key purpose is to lead and disseminate early diagnosis, education, and social integration services for children with autism throughout Turkey.”

There is a family support group in North America that you should be able to access through   http://groups.yahoo.com/group/DEAF-Autreat   I have met some of these families, and they are wonderful people and many have struggled with similar concerns.