First, let me clear up a misunderstanding: Different people mean different things by “success” with cochlear implants, but by far, the vast majority are at least “satisfied” and most are happier than that.  Cochlear implants benefit most deaf children with regard to hearing, speech, language, and academic achievement, although none of these necessarily reach the same levels as hearing children. Not all children are successful with spoken language, but even when they are not, access to environmental sounds can be beneficial for incidental learning and cognitive development.

Certainly, parents should seek a variety of perspectives before choosing a cochlear implant for their child. In fact, the amount of time parents spend with such investigations is a good predictor of children’s “success.” In part that is because some parents discover that their child is not a good candidate for an implant (thus reducing the chances of a poor outcome), and other parents learn just how much long-term support is necessary, so that their children are more likely to receive the therapy and other services that will allow them to optimally benefit from their implant. In this context, parents also learn that cochlear implants do not turn their deaf children into hearing children. The typical child with a cochlear implant functions as though they have a mild to moderate hearing loss – some better, some worse.

While most deaf children benefit from the cochlear implants, it is not clear how many “disgruntled” former implant users are out there. Those individuals may be more visible, but they likely are a relatively small minority. And, I freely admit that prior to 2000-2001, I was not a supporter of pediatric implants, because I did not think there was enough evidence to support their value given the relatively risky surgery. Since that time, the surgical risks have been minimized, and there is now abundant evidence of the great value of implants for most kids. Enough to convince me.

It would be helpful to all concerned if parents received full, objective information about pediatric cochlear implantation. Pollard (1996) discussed this issue in the context of  “Informed consent at a phenomenological… conceived as freedom from undue bias based on ignorance or unfounded beliefs about life with deafness or, more specifically, life with or without a cochlear implant.” That information would include the fact that sign language is not necessarily a bad thing for children with cochlear implants and may be helpful in supporting spoken language development as well as social-emotional development and academic achievement.

For more information, see Pollard, R.Q (1996). Conceptualizing and conducting preoperative psychological assessments of cochlear implant candidates. Journal of Deaf Studies and Deaf Education, 1, 16-28.

Spencer, P. E., Marschark, M., & Spencer, L.J. (in press). Cochlear implants: Advances, issues and implications. In M. Marschark & P. E. Spencer, Editors (in press). Oxford Handbook of Deaf Studies, Language, and Education, Volume 1, second edition. New York: Oxford University Press.

Without assessment information [and several experts recommended that you immediately arrange for an assessment through school psychologist or reading specialist], my comments would be generally good practice but may not target this child’s real needs. Without knowing what approach(es) are being used in reading instruction, it is difficult to know what’s not working. My guess is that as the reading materials have become more conceptually complex, vocabulary load has increased dramatically, and sentence structures more complex, this student’s word recognition skills – which were sufficient to make good progress at earlier levels – now are not sufficient. Added to this is the possibility that as his hearing has declined, he may be less able to apply phonic skills to identifying new words, which had been his strong skill area … I would suggest the following emphases: building background knowledge and introducing new vocabulary before reading the material, teaching and reinforcing cognitive strategies for comprehension during and after reading through approaches such as asking questions that require analysis, synthesis, and evaluation; teaching how to generate self-questions and use mental imagery; retelling; responding in writing (e.g., journals). I also see writing instruction- such as writing workshop – as important for this student. I don’t see any particular reading program better than any others in meeting this child’s needs – Guided Reading Approach, DRTA, Reciprocal Teaching – could all be successfully used. At home, parents should continue to read to him, and if he has a younger sibling, he could read his stories to his brother or sister.

And here are more pieces of the puzzle from John Luckner, University of Northern Colorado:

The fact that your son did not make any progress in reading over the course of one year is very concerning. Your query raises many questions.

1. Does your son have an Individualized Education Program (IEP) or 504 plan? If so, is reading an identified objective? If so, what areas of reading (i.e., word recognition, vocabulary, comprehension, phonology) are being addressed?
2. Does your son receive services from a licensed teacher of students who are deaf or hard of hearing? If so, are those services related to reading?
3. Does you son use and benefit from amplification? Has a recent audiological evaluation been undertaken? Has a functional listening test been conducted to determine if the amplification is advantageous?
4. Have your son’s reading skills been assessed using a diagnostic reading instrument that allows professionals to identify his areas of strength and concerns and to develop a reading program that builds on the strengths and addresses the specific areas in need of intervention?
5. What are your son’s interests? Do you provide him with reading material related to his interests and interact with him about what he is reading?
6. Does the classroom teacher make accommodations to assure that your son has access to the communication, academic and social interactions that occur in the classroom?

   It is my hope that the responses to these questions will help you and the professionals you work with develop a more aggressive plan for dealing with your son’s lack of progress in the area of reading.

There is no one particular way to approach this situation. It depends on the individual, and if he’s that far behind at age 15, it seems most likely that what he needs is one-on-one work. Beyond that, here is the collected wisdom from three experts in the field: Barbara Schirmer, University of Detroit; Beverly Trezek, DePaul University; and Cheri Williams, University of Cincinnati.

Without information about what approaches have been used with this student up until now, and diagnostic information about his strengths and weaknesses in reading, it’s not possible to identify a particular approach likely to be successful with him. Therefore, it would be important to begin with an assessment to identify the student’s strengths, weakness and needs in the area of reading.  The Southwest Educational Development Laboratory (http://www.sedl.org/) has an extensive database of assessments which includes both general reading batteries as well as those targeting specific areas (e.g., phonemic awareness, phonics, vocabulary, etc.).

Regardless, one-on-one is undoubtedly needed, and likely to involve as much word recognition skills as possible within the context of either (1) language experience type stories generated by the student with the tutor and/or (2) a structured reading program in which words are introduced gradually and with repetition. These series, such as those using Direct Instruction, are phonics-based, and would need to be paired with visual phonics. If this student could be tutored by a Reading Recovery trained teacher who has experience working with deaf students, I believe he might make progress. One of the program’s strengths is matching explicit instruction to the student’s specific literacy needs. One possibility is to approach this as a severe reading disability (as we would with hearing students. Programs like Wilson are designed for adolescent and older students who have such disabilities. Although none of us have first-hand knowledge about the research on these programs, second-hand reports indicate that they are very effective.

In addition to the curricula already mentioned (i.e., Wilson, Reading Recovery, Direct Instruction), the Florida Center for Reading Research (http://www.fcrr.org/) has reviewed literally hundreds of core and supplemental reading programs and organized their review around the NRP’s recommended five areas of instruction.  Once an assessment can pinpoint specific areas of instructional need, a curriculum can be chosen.  Naturally, the instruction will need to be supplemented to meet the unique needs of the deaf learner (e.g., Visual Phonics, sign language, visual supports, etc.) but the curriculum will provide a foundation for explicit and systematic instruction.

Although it appears that hearing loss and autism spectrum disorders are more common than they used to be (or more accurately diagnosed), there is relatively little information out there for us to go on. So, we went out in search of people with expertise in this area. One response, in the form of a PowerPoint presentation  came from Jennifer Adams at the Rochester School for the Deaf (Rochester, NY). It can be found on our website <click here>.

Another response came from  Jet Isarin and Roger Verpoorten, at PonTeM in the Netherlands:

For me (J.I.), as a parent of a an autistic son with a moderate hearing loss, a researcher in the field of disability in general and deafness and autism specifically, your attempt to enroll your deaf autistic son in a deaf school seems to be more than justified. It will, however, require specific knowledge of autism to teach your son sign language and to help him find his way in school and with peers. Maybe the parents organized in Deafautism can share their experiences with you.  In the meantime, here are some things we have learned, if indirectly:

Both spoken language and sign language are rapid and transient: once an utterance is made it quickly disappears without a trace. Therefore, autistic children find it hard to acquire a first language; a second language might be just as hard or even harder.  It does appear that the visual features of sign language better fit the visual abilities of (most) children with autism. However, the multidimensionality of sign language (form, position, movement, and nonmanual features [like facial expression]), and the complexity of expressive signing often clash with the (dis)abilities of autistic children.  Given all of this, most autistic children develop language slowly and differently than other children, sometimes failing to develop any expressive and/or receptive language skills. These

difficulties can be related to different sensory experiences, failures in joint attention, and problems with the integration of information from different sources.

There is evidence that deaf autistic children with cochlear implants tend to suffer, more than profit, from their implants.  CI’s tend to engender auditory stimuli that cannot be processed and/or decoded by deaf autistic children. For more information, you might look at Edwards, L.C. (2007). Children with cochlear implants and complex needs: a review of outcome research and psychological practice. Journal of Deaf Studies and Deaf Education, 12, 258 – 268 (available free at www.jdsde.oxfordjournals.org).

As you search for a school for your son, it is important that you look for programs in which teachers have specialized knowledge both with regard to language acquisition by children with significant hearing losses and also the special language and cognitive needs of children with autism.  We wish you the best of luck!

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.

Many people in the deaf community have mixed feelings about pediatric cochlear implants.  Some continue to feel quite strongly that parents should not make such a major decision without giving the child an opportunity to have some say in the matter.  Of course, this means waiting for quite a while.  Others, though, recognize that parents have a legal and moral right to make informed decisions about what is best for their child.  It is safe to say that, whatever your decision regarding implantation is, there will be some support from people in the deaf community for your decision if you discuss it with them, and there is likely to be some opposition as well.  It is also probably safe to say that this opposition will not be as pronounced as it would have been a decade ago, however.

A cochlear implant does not turn a deaf child into a hearing child.  Many children with implants will need support services over the years, especially in school, and many will learn to sign and will interact with other deaf and hard-of-hearing children.  A child with a cochlear implant will be welcome into the deaf community if the child is comfortable using sign language.  For additional information about these issues, you might find our book, Cochlear Implants in Children: Ethics and Choices (Gallaudet University Press, 2005), to be of interest.

As far as contact sports are concerned, this is something that you should discuss with your cochlear implant surgeon.  One of us (John) has had an implant for several years, and the idea of butting heads on a football field or even playing soccer is not something he would recommend (even after taking off the external part of the implant).  On the other hand, bicycle riding is fine, although a helmet can’t easily be worn with an implant (in this case a hearing aid on the non-implanted ear, if there is one, would be a good idea).  Swimming, with the external part of the implant taken off, is fine.  For sports like tennis or basketball, the external part of the implant could still be used as long as a sweat band covers it to prevent it from falling off (although, for basketball, a sharp elbow that lands on the implant is not likely to be pleasant, and could easily damage the external part of the device.

In the interests of full disclosure, let me note that I had to look up CASTLLS – an acronym for Cottage Acquisition Scales for Listening, Language & Speech (CASLLS). This guide apparentlywas developed by professionals at a private school for deaf children in Texas – Sunshine Cottage. It is a tool for auditory rehabilitation/speech-language professionals, and it follows a developmental approach and it integrates skills from four areas including listening, speech production, language and cognition. As with many commercially available programs, this one is a guide for professionals and as such, we need to keep in mind that each child has unique learning styles, capacities (gifts), and rates of progress. You ask whether diverting from this “guide” can reduce a child’s progress in closing the language gap. There is no definitive answer. One could easily ask the inverse, does strictly staying with the guide increase a child’s progress in closing the language gap? If the answer to that question was YES, I would imagine that this “guide” had magical properties. We know some things about what helps to close “gaps” in learning. First, the sooner we target intervention, the less time there is for a “gap” to become a chasm, thus we can hopefully minimize the size of the gap and begin to close it. We also know that language can and does develop in the absence of audition if there is an alternate way to expose the child to language (sign language). Having said that, if a child is using audition to learn language, there are several requisites that must be in place. The first is that audition skills must be optimized, the technology used must be working properly and consistently. Key elements also include that the child must be able to progress along the basic lines of becoming aware of sound, discriminating one sound from another, identification of sounds, and finally comprehending sounds (words, sentences). IF there is a lack of PROGRESS in this area, I would say learning language given ONLY auditory input will be slower. On this premise, if I were asked the question “if a child does not progress in the auditory skills part of an oral language learning program, will it reduce progress in closing a language gap?” , my answer would be “yes, certain listening skills are requisite in order for oral language skills to develop.

It is unclear if you are referring to a reading series that covers the same material but with some level of flexibility concerning vocabulary and reading level or leveled readers that are high interest with low vocabulary. In any case, there are a few reding series that have show a lot of promise with our students here at the Western Pennsylvania School for the Deaf:
Jamestown Literature – An Adapted Reader (www.jamestowneducation.com)- It complements the Glencoe Literature (an on level reading series). For us that means that students are covering the same stories as their peers but with some adaptation. The literature is adapted to lower reading levels and teaches critical reading skills, builds background knowledge and reinforces essential vocabulary.
Daybooks of Critical Reading and Writing (www.greatsource.com) They combine high-interest fiction and nonfiction with direct reading and writing instruction. They’re a great way to encourage active, analytical reading and help all students build key reading and writing skills. Also the amount of text tends to be more manageable for our students.

Most of the information we have about reading comprehension among deaf and hard-of-hearing students at the national level comes from Stanford Achievement Test norming data collected by the Gallaudet Research Institute. Data from 1974 (SAT7) norming, just before P.L. 94-142, showed the median (50% above, 50% below) grade equivalent level for reading comprehension among 14-year-olds to be 2.2 and that for 18-year-olds to be 2.7. Data from the 1983 (SAT8) norming, showed those median levels to be 2.9 and 2.8, respectively. Although I have not yet seen norming data for the new SAT10, data from the 1999 norming (SAT9) yielded a median for reading comprehension by 14-year-olds to be about grade 3.3 and for 18-year-olds around grade 4.0. In other words, since the mainstreaming diaspora, the median reading comprehension scores of 18-year-old deaf and hard-of-hearing students in the United States, at least according to the SAT norms, has gone from just below third grade to fourth grade. There are a variety of theories about why this is the case, and I will not offer my favorites here, but clearly the change from predominantly separate placement for these students to predominantly integrated placements was not the solution people had hoped.