My son is 5 years old, with moderate hearing loss due to incomplete development of the cochlea. He attends kindergarten at our neighborhood school in a mainstream classroom. In addition to his hearing loss, he also has a tracheostomy. He is normal intelligence, and his speech and language are at close to age level, but he has some speech intelligibility issues due mostly to the tracheostomy but also due to him hearing sound poorly.
During his preschool years, my son had a single Oticon Ponto Plus worn on a soft band. The district issued him an FM system for use in school (Inspiro with Roger X plug in receiver) for preschool. His speech comprehension and sound articulation dramatically improved with the FM system, since he was able to pick out more of the soft letter sounds during “learn to read” lessons. My son upgraded to Phonak Sky V 70 P bilateral behind-the-ear hearing aids over summer vacation. Our insurance paid for the new hearing aids, but not for integrated FM receivers. The hospital audiologist advised that we should request for the school district to issue integrated FM receivers so that we could purchase and use a Roger Pen system at home. The cost of the Roger Pen system is about $1100, and we are willing to pay for it out of pocket because it seems really awesome and useful. My son has lengthy daily breathing treatments due to his medical conditions, which create a ton of background noise. He’s generally bored and annoyed during his breathing treatments, because even with hearing aids on, he can’t really hear or understand speech around him.
The district audiologist states that the district has a policy of issuing only plug-in Roger X receivers for use at school, and that they won’t pay for integrated FM receivers. Our current IEP didn’t request the use of an FM system for home use, because the old hearing aids didn’t have that capability. Now that the new hearing aids have the capability of home FM system use, we want to use it.
Does a DHH child have a right to use an FM system at home? If a child has the right to use an FM system at home, does the district have to provide integrated FM receivers? Do we have the right to demand one style of FM system (the newer Roger Pen with Roger 18 receivers) over another system (the older Inspiro with Roger X). If we end up having to purchase the integrated FM receivers out of pocket for use with our home FM system, is the school then obligated to use the technology we purchase? We’re willing to prioritize our purchases to spend some money on a home Roger system because we think it will help his hearing overall. If the school says we have to leave his Roger X receivers at school, then we will also have to purchase two integrated Roger 18 receivers for home/school use, which would add another $2000 to this scheme.
I applaud your efforts in advocating for your child.
My background is in clinical audiology and I am not a legal expert, so please know that this response should not be considered legal advice.
The following website, although it is written for the State of New Jersey, addresses many of your concerns: http://www.drnj.org/atac/?p=63
To summarize, the school is only required to send the FM/Roger system home if it is specifically related to a goal on the IEP. You could work with the IEP team to try and add this. Additionally, the school is not required to purchase any particular FM system or receiver, if there is an alternative (i.e., cheaper or more universal) system that serves the same function or enables the student to successfully achieve their IEP goals.
If you do purchase the integrated Roger receivers on your own, you would need to discuss with the school audiologist whether your son would be able to use them at school or not.
I hope this helps and I wish you the best in navigating the IEP process.
I am a hearing, fluent ASL signer who is considering adopting a deaf child from a developing country. I have very limited information about his health history or hearing beyond the fact that the child “does not hear or speak at all.” The child’s estimated birth date is March 2012 and he has been living in an orphanage since being abandoned by his birth family for a couple(?) years. He is reported to imitate other children well and generally be content and happy. There does not seem to be any exposure to signed language and I assume zero early intervention or auditory assessments made. I am very aware of the importance of early language exposure. I can provide a signing environment probably from age 4.5 onward. I am wondering if you would see any benefit to his overall cognitive, social-emotional and academic development in also pursing a CI? Is it possible for a child to “catch up” from such a late start? I know that amongst older Deaf people this situation of coming to language late is not as unusual as it is today. My hope for my child would be that they would be able to become a critical thinker, I don’t place as much value on speech skills as I do on the possible boost to English literacy that might come from auditory input a CI could provide. I am an interpreter and I am trained as an elementary school teacher (though I don’t teach deaf kids) .
The benefits that you seek from a CI are not usually achieved by children whose families have not invested significant resources into auditory-based instruction (speech perception and production) from the time of implant, throughout the school years. That investment entails placing a high value on acquiring spoken language and being willing and able to commit time and energy toward the process. On the flip side, however, there is no guarantee that investing a high level of desire and effort will have the payoff that you wish for your child.
Your child’s auditory brain areas will not be fully mature until his early teens. It remains open to learning, even learning language, although those areas may be allocated to visual processing without acoustic stimulation prior to about age 7. So, you are working with a long list of unknowns, inevitable in the situation of adoption, especially when a child is born in a developing country. For example, you believe your child to be deaf. It may very well be true that your child is deaf; or maybe not. Even a moderate conductive hearing loss could account for apparent lack of hearing (thereby, ruling out a CI); or there may be an anatomical abnormality of the outer or middle ear, possibly reversible; or auditory neuropathy affecting neural transmission of sound to the brain. Or something else.
Among the unknowns is the child’s experience in utero and during birth; his early nutrition, diseases, and accidents; his genetic makeup; and whether he met nonverbal developmental milestones. There is no information about his speech motor skills. It would be informative to learn whether he attempts to communicate his needs (grunt, point, gesture, pull an adult to a relevant place). While he is said to be content and happy and imitates other children, does he engage in play with others? Does he recognize and comprehend symbols (for example, match pictures to objects)?
A CI is not a magic bullet. At the outset, with an uncertain history like your child’s, even CI candidacy may be difficult to ascertain. Following audiologic and development assessments, there is a requisite trial with a well-fit hearing aid. If a CI is obtained, benefit will be measured in small steps, focusing on gradual growth: whether the child accepts the new input, shows increased environmental sound awareness, turns to familiar voices, demonstrates changes in vocalizations. Many small steps precede the desired big gains. Catch-up, were it achievable, is very unlikely to be demonstrable early on. Your plan is to provide a signing environment, and speech appears to be of indeterminate value. Without a plan to provide consistent auditory (spoken) stimulation at home and at school, the CI will be significantly hampered in the facilitation of spoken language learning and positive effects on literacy and academic performance. Parents who consider a CI for their children often do so with the intention to get the most out of the tool. They speak to their child. They provide instruction that will help the child to speak. They stay the course through the school years.
Importantly, handle the transition from orphanage to home, first and foremost. Take time to tend to the emotional attachments with your child as much as you focus deliberately on his cognitive and academic development. Your child should feel safe and loved, without pressure to perform, as you establish communication through your relationship. Gently, consistently, reward all efforts to communicate. Initial stimulation should not be overwhelming. Your commitment to parenting will support your child’s learning. Be prepared to begin at the beginning, as if welcoming a new baby, with silly songs and first picture books.
Then, find the best pediatric audiologist in your region and make an appointment for a complete audiologic assessment. Follow up on all recommendations without delay. Filling in the unknowns will confirm your thinking one way or the other regarding speech and move you from a hypothetical answer to a personalized response on CI candidacy and estimates of CI benefit. If you choose a CI or a hearing aid, ensure consistent use and daily wear time. Minimize background noise in the house and at school. Focus the child on listening. Model spoken language and emphasize sound before vision. Use “listen cues” and wait time to establish listening attention. Then be expectant. And be patient. Keep in mind that hearing age will be more relevant than chronologic age.
My son got a cochlear implant at the age of 2 years; now he is 6 years old and he talks well. Will he be capable to learn the ISCE syllabus in school?
The ICSE (Indian Certificate for Secondary Education) is a national entrance examination in India administered by the Council for the Indian School Certificate Examinations. Neither the cochlear implant nor your son’s speech will be the determining factor in your son’s studying for and performance on the ICSE. How well he does depends on his mastery of the content in the subjects covered by the syllabus and his academic/cognitive abilities. Your son may need additional support for this effort, just as he might for his regular school subjects. But, his hearing loss should be no more of a barrier in preparing for secondary school examinations.
My 10 year old daughter is fitted was fitted with a cochlear implant at the age of 3+. Overall, the CI has been beneficial to her. She has always attended a mainstream school with 3 sessions of speech therapy weekly. Academically, she has demonstrated strong potential – averaging decent scores in test and exams – with a lot of remedial teaching by her therapist and several hours of study with lesson teachers and self study (a lot of hard work…I wonder how she copes, but she is a strong child) The teachers in school have no special education training and haven’t been able to teach her in a way that enables her to be adequately imparted in class. As she approaches high school I am looking for high schools either in the UK or US that can accommodate her learning difference. So studying wouldn’t have to be so difficult. She is quite brilliant and it will be a shame for her not to be given the enabling environment to reach her full potential. Her only mode of communication is written and spoken language.
The answer to your question would be different in the United States and the United Kingdom.
If you are interested in your daughter attending a residential (“boarding”) school for the deaf in the U.S., and you are not a resident, state-supported schools for the deaf are not an option. There are several private residential schools for the deaf that your daughter could attend if she qualifies and you are willing to pay full fees. However, virtually all of those schools utilize sign language (to a greater or lesser extent) as well as spoken or written English. Aside from schools for the deaf, regular (“public”) schools in the U.S. are required to provide deaf children with appropriate accommodations. It’s a bit more complicated than that, but the generalization will suffice for the present purposes because the U.S. does not have public boarding schools.
If you are interested in your daughter attending a boarding school for the deaf in the United Kingdom, your daughter qualifies, and you are willing to pay the fees, there is at least one “oral” school for deaf students where your daughter would receive the necessary support services. Generally, however, private (fee-paying) boarding schools in the UK are not required to provide accommodations for deaf children. State-supported regular schools are required to do so, but it is unclear whether the relatively new, state boarding schools are similarly required to provide accommodations or are willing to accept deaf students. (The National Deaf Children’s Society has been working on this front.)You would need to seek them out through the State Boarding Schools’ Association.
Yet another possibility is homeschooling.
I am a Teacher of the Deaf in a mainstream setting. I have a teenage student with a cochlear implant. She struggles with feelings of isolation and had a very bad experience at a school for the Deaf a few years ago. She desperately wants to have a friend that actually knows what she is going through but is unwilling to attend any Deaf teen events in the community due to the experience she had at the school for the Deaf. I believed she was bullied pretty severely for having a CI. I would love to help her find a friend that might be going through the same situation so she could videochat or even email. I am having difficulty finding other mainstreamed teens out in the world to with CIs to connect her with and wondered if you had any suggestions.
Some people at NTID have tried to get funding for a “video buddies” project that would allow students like yours to connect. Students who use different communication modalities, are different ages, have different interests could find friends around the country for video or text chats. Unfortunately, they have not yet found a foundation or organization willing to support the project. In the meantime, here are some possibilities:
Hear US Teens https://www.facebook.com/hearusteenspage
There are several active cochlear implant groups on Facebook both brand-specific and general). A few are listed here:
Advanced Bionics www.hearingjourney.com
Connect to Mentor site http://apps.advancedbionics.com/CTM/US
Medel’s Patient Support Group email@example.com
Cochlear Americas: http://www.cochlearcommunity.com/
A new series of captioned interviews with cochlear implant users has been posted on YouTube by an RIT student. The student hopes to educate others about cochlear implant technology and the experience of the users. he first two videos are intended to be educational and humorous.
CI Interview: Braden https://www.youtube.com/watch?v=7CFBOay2tyY
Cochlear Implant: Funny struggles https://www.youtube.com/watch?v=DujSeNPHB48
Leadership Opportunities For Teens http://www.listeningandspokenlanguage.org/LOFT/
Listening and Spoken Language Symposium http://listeningandspokenlanguage.org/
Biennial Northeast Cochlear Implant Conference http://listeningandspokenlanguage.org/
Empowering teens is also addressed with self-advocacy strategies. The document, Self-advocacy for Deaf and Hard of Hearing Students is posted at http://www.handsandvoices.org/needs/advocacy.htm.
My daughter is thirteen and deaf and recently got a cochlear implant. How does she qualify for a free iPad? She attends a school for the deaf and needs the iPad to communicate at school through FaceTime. Please help. I can also provide doctor documentation if you need it upon request
Well, we haven’t heard of free gifts coming with cochlear implants, but a quick google search returns this: http://www.wonderbaby.org/articles/ipad-funding-special-needshttp://www.wonderbaby.org/articles/ipad-funding-special-needs
If the iPad is desired for personal communication with friends and family, I do not think this is something that either insurance or the school system would pay for. You probably qualify for a free videophone based on your daughter’s deafness and use of ASL. Applications can be found here.
There many alternatives to Facetime that can be used on computers (Mac or PC), other tablets, or smartphones, including Skype and Google Hangouts. If your daughter has access to a computer or smartphone with a video camera, then there is no need for the iPad specifically as alternative video chat software can be used.
If there is a specific therapeutic reason for having the iPad, such as a communication training app or other educationally based app, it may be possible to request that the school system purchase it for her. First, the IEP would have to be changed to indicate the specific need for it. The iPad would be school property in this case but it may sometimes to be possible for the student to use it outside of the classroom, situationally-dependent.
Lastly, some low-communication individuals do use alternative and augmentative communication devices like a DynaVox, but these are costly devices. There are some alternative apps that may be useful for these individuals, and in these cases it may be possible that health insurance might approve the iPad as medically-necessary. It doesn’t sound to me like that’s the circumstance here.
I’m a pediatric occupational therapist who only occasionally works with deaf children. I don’t have time (or a library) to read papers and books about deaf children. Is there something like Cliff’s Notes on deaf kids?
Yes, Virginia, there is a Santa Claus. (sorry!)
Raising and Educating Deaf Children is a new site offering objective, evidence-based information for policy-making and practice associated with raising and educating deaf children – with an eye to improving them. New eBulletins are posted quarterly; each includes sections on The Issue, What We Know, What We Don’t Know, and Implications about various topics, all written so as to be accessible to parents as well as professionals. eBulletins include Further Readings with content offered free of charge by Oxford University Press.
My 4 year old son has been diagnosed with severe sensorineural hearing loss in both ears. He was not born this way; we believe he lost his hearing sometime between 2.5 and now. He was just diagnosed in June and he will be getting his first pair of hearing aids at the end of July. I’ve been told by his ENT and Audiologist that we need to make a decision about cochlear implants (CIs) very soon. My son had lots of vocabulary and speech sounds; he now is a little difficult to understand but communicates with family and friends. My question is where can I find good information about CIs and also why must I rush to make a decision?
It sounds as if your child’s loss predominantly occurred after he acquired verbal speech and auditory language, so his deafness is categorized as “post-lingual.” This means your son’s brain has a memory of what speech sounds like, even if that memory and how to reproduce it are fading a bit. That is one reason why implantation is recommended sooner rather than later – research has demonstrated that the shorter the lag between onset of the hearing loss and input from a cochlear implant, the better the child does. We believe that is because the auditory memory (part of that auditory path design) has had less time to “forget” the sounds of speech. There are lots of research articles that talk about keeping that time-frame short between onset of hearing loss and use of the CI, although outcomes are more variable than they might appear.
The signal from the hearing aid is amplified speech and other sounds, so your son will hear things at a louder level with his aids. The sounds will be distorted and some sounds may not be transmitted very well (sounds like /sssss/ and /shhhhhh/). His brain and his ears are connected by a path of nerves (the auditory path), and the signals that the ears receive must be interpreted by the brain. There is big difference between the signal provided by a hearing aid (loud speech) and the signal transmitted by the cochlear implant (kind of like Stephen Hawking’s electronic speech).
Without knowing more details as to the cause of the hearing loss, it is unclear whether there are specific reasons for recommending earlier implantation – some audiologists and ENTs simply believe that CIs are for almost every deaf children and the sooner the better. However, I can tell you that there are some conditions that can cause a bony growth to happen in the cochlea (which is the organ if hearing) and, if so, this growth begins after the hearing loss in a gradual and slow manner. If this occurs, the longer one waits, the more difficult it can be to insert the electrode of the cochlear implant.
There may be other reasons your healthcare providers are wanting you to make a decision, but you need to do your homework first. One of the predictors of children’s success with CIs, literally, is how much time their parents spend getting information on the subject. Here are two links that let you compare what the signals of a hearing aid sound like and the signals of a Cochlear Implant sound like
Here are some article review links:
[Ed. – For more, very objective information visit the UK’s Ear Foundation]
Over the years I have had many hard of hearing students deny their hearing losses and refuse to wear any amplification. I usually tell students that amplification needs should be discussed with their parents. I generally support whatever the parent wants to do.
One of my students’ parent wants to develop a contract for hearing aid and FM use next school year for her seventh grader. The prospective seventh grader will not acknowledge the hearing loss or any of its impact. At this point, I am truly concerned for the student’s well-being. My inclination is to teach clarification and compensatory skills while working to help the student come to some acceptance of the hearing loss.
What does research say about acceptance of hearing loss or amplification use in adolescence?
Your question about available research is difficult to answer – after all these years, we still only have anecdotes to inform us, and not even enough of these to work with. But we can take an educated guess at what this young person is thinking: “I have a problem but I want it to go away; all I want is be like everyone else so I will pretend I am.”
We do know quite a bit about acceptance in general, though: a mindset that first requires the hard work (and pain) of looking at a situation honestly. This young person may need to work with a counselor to “get there.” Additionally, while working on the strategies mentioned, perhaps you might ask her to chat about the concept of resilience. It’s often more comfortable to talk less about the issue at hand (amplification decisions) and instead discuss a bigger but semi-related topic, as in: “People are talking a lot about resilience these days, have you noticed? When adversity occurs, how do people rebound? What strengths do people draw upon to recover and move forward? Any examples come to mind?” Just generally about “people,” but most of us insert ourselves into the answers. All children need practice talking about their emotions. She is fortunate to have you in her life.
Our district audiologist wants to put all DHH students on personal FM and remove the class soundfields altogether. I find conflicting research on this. The DHH teachers don’t want to get rid of the class soundfield systems. Can you please confirm either the benefits or detriment of keeping the soundfield in place in addition to personal FMs?
By class soundfield system, I assume you mean a room equipped with two or more speakers that broadcast the desired signal into the desired space. The problem with these systems is that everyone in the room is exposed to the signal and, depending upon where the deaf or hard-of-hearing student is sitting, there could loss of signal strength over distance. Personal FM systems have the advantage of being set up specifically for the user, whether the individual is using a hearing aid (s), a cochlear implant, or both. The signal is clear, coming directly from the teacher to the student. The signal does not lose strength over classroom distance, and the teacher can use one microphone to connect to several students at the same time. Also, there is no “carry over” into adjoining classes as there might be with a sound field system (depending upon the decibel level of the signal). In my opinion, the FM is superior though more expensive. Two additional notes: (1) Students with milder hearing losses may do best with soundfield system while those with severe to profound losses are likely to do better with FM. (2) It is unclear why a person would remove an existing soundfield system unless maintenance is an issue.