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

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.
Response from Marc Marschark - NTID

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.

I have a son who was born deaf but has a cochlear implant. he doesn’t want to pick up on spoken language so im introducing sign language to him. He also has many developmental delays and was wondering what would be the best way to go about teaching how to sign.

Question from P.T., California. Posted September 19, 2012.

This is a tricky question, not one that can be addressed fully on this site. There are so many questions that need to be asked! Crucially, I would want to know things like: How old is the child? How long since he had his implant, and has he been wearing it consistently? Are you sure the technology is working correctly and that your son was mapped correctly? What do we know about these other developmental delays?

Importantly, we need to know what is meant by “doesn’t want to pick up on spoken language.”  This is an interesting and unusual way of phrasing this, and I would need to know how you have reached this conclusion? It is only with this sort of information that we can give you any clear advice. Plus, assessments describing the child’s progress or lack of progress from the pre-implant stage to now would be very useful indeed.

The next step would be to think about what you mean by sign language. To professionals this may be very clear, but to parents it can mean many different things. Are you looking to use signs to support spoken language? Or, are you looking at a whole new language? Using simple signs to support spoken English would be a great place to start. Learning a language like American Sign Language would require a big commitment from you and other family members. And, she would need to explore at length whether your child’s developmental delays might act as a barrier to language learning – sign languages are not an easy option!

I think you really need to talk to your local professionals, so the whole family can all think about what you are trying to achieve with your child and refocus on the goals. Importantly, if they tell you either that you must not sign with your son or that he will never achieve spoken language, you should look for another opinion. There is no “black and white” here, you are asking about a complex situation that likely does not have any simple answer.

Can you suggest criteria or guidelines for a speech-language pathologist in deciding amount and type of articulation services for an 11 year old, with a cochlear implant and with a cognitive disability (FS IQ 67)? He can produce all the phonemes in isolation but has many errors, deletions, and substitutions in connected speech. This student’s many needs all require large amounts of time and repetition (sometimes years) in order to develop, though we do see progress. In part the slow progress is because the student is complex (history, etiology, needs). In addition however, the student’s services and placement are not adequate to meet his complex needs; we work with it as best we can. The good news: I hope he will receive an evaluation at the Clarke School this spring. Meanwhile another year is ticking away.

My suggestion to the SLP was to embed articulation work within the pragmatic, social communication we will be focusing on this year. Suggestions or examples of what this more specifically might look like would be welcome since she is not trained in working with deaf and hard-of-hearing children.

Question from K.B., Vermont. Posted September 19, 2012.

In looking at your description of this child, his cognitive skills, age and current articulation skills, my first inclination is to ask whether a phonological analysis has been done on his speech production patterns?  I ask this because you say that he can produce all phonemes in isolation, (this is great!!!), yet he has errors in connected speech.  A phonological disorder is characterized by difficulty acquiring the rules that underlie the sound system.  A child with a hearing loss and cognitive issues would be at risk for this.  For example he may be producing phonological processes that are characteristic of a younger child, such as deleting final consonants (“home” is pronounced “ho”) or fronting velar sounds (“Kiss” is pronounced Tiss), or he could be displaying the process of stopping (substituting a stop sound for a fricative or affricate sound, so “Funny” is pronounced “Punny”). There are several tests that can assess whether the child is producing phonological processes – you might want to look into having an assessment done.

•     Bankson-Bernthal Test of Phonology

•     Clinical Assessment of Articulation and Phonology (CAPP)

•     Computerized Articulation and PhonoEval System

•     Hodson Assessment of Phono Patterns (Happ-3)

•     Kahn-Lewis Phonological Analysis (KLPA-2)

•     Phonological Process Analysis

•     Smit-Hand Articulation and Phono Eval (1997)!

•     Structured Photographic Articulation Test

The other issue I wonder about given your description is whether he has apraxia, a motor programming issue, and a good test that checks for apraxia is called the Kaufman Speech Praxis test. The website provides other tests http://www.apraxia-kids.org/site/apps/nl/content3.asp?c=chKMI0PIIsE&b=788447&ct=464141

I see that he has an evaluation coming up at Clarke and that will be great, but in the meantime, it would be valuable to know whether he has characteristics of either apraxia or a phonological disorder.  I say that because these types of disorders do not respond well to traditional therapy methods, and for these he will need direct targeting. It would be important to begin adapting his therapy plan accordingly.  The “Cycles” method can be very effective in treating either issue and even for children with hearing loss.  A typical session in the “Cycles” method goes like this:

•     Review past session

•     Auditory bombardment

•     Target word cards (adapt with photos, or photos with words printed under them and take vocabulary from his units in school )

•     Production Practice with different activities every 5-7 minutes

•     Stimulability probes

•     Auditory bombardment

•     Home Program

Best of luck!

My almost 9-month-old niece is deaf and will be getting her first cochlear implant soon. Her mother has been researching the three implant brands but has not been able to get many professional opinions to help her decide which to choose. Any thoughts?

Question from S.H., Massachusetts. Posted August 17, 2012.

Professionals may or may not have their own “favorites” when it comes to the top-three implant brands.  Some will tell you straight out, and some do not feel comfortable making a recommendation of one implant over another. Each company has had its ups and downs with regard to factory recalls and product integrity. For some children, there are anatomical differences with regard to the cochlea (in the case of cochlear malformations or bony growth) that make one internal device preferred over another. For example, Med El offers a split electrode array that can be preferable when there is an anomaly. Certain life-styles warrant a specific choice in design feature. Cochlear Corporation and Advanced Bionics offer a “splash proof device.”  I would have a frank conversation with the surgeon and the audiologist who will be programming the device and ask them these questions:  1. Which device has been the most reliable in your experience? 2.  Which device have you had the most experience with? 3.  Which company provides the best support with regard to customer service, repairs, and warranty?  4. Are there any conditions specific to my child that makes one device better? 5. Is there a specific device that has an advantage given how young my child is?  Finally, I would ask the audiologist to give you a brief demonstration of the external device parts (how the device turns on, how the processor works with regard to volume and programs, how the headpiece looks and fits).  After you have seen and heard all this information, it is likely that one device will stand apart to you and that it will feel like the right choice.

My 17 month old daughter will be having her second CI soon. Her therapist recommends that she only listen and NOT sign or use hervision. I want her to know how to sign as well as use her CI. I am trying to teach her as I learn. I have bought several books but i feel like I should learn from a person not a book/ dvd but I’m having trouble finding someone to teach me in my area. Do you know of anyone in my area that teaches sign language?

Question from C.W., Georgia. Posted June 22, 2012.

Specifically for your area, West Georgia College is likely a good place to find continuing education courses, including American Sign Language. More centrally, however, if your daughter is 17 months old, she should be in the Georgia PINES project (parent infant network). The PINES teacher would be able to help you both her learn signs. If she is not already in PINES, you can get more information at http://www.gapines.info/whatmodels.htm.  PINES also offers a deaf mentor project so you should have the opportunity to work with and learn from a deaf mentor.