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.
We adopted our daughter when she was seven… no one had ever noticed that she was 95% deaf in her right ear. Now, as a beautiful 14-year-old we have noticed that while she is comfortable in public in our company, she gets overwhelmed in public. While shopping, she needs to stay very close to us, because I think, she doesn’t know how to filter out the sounds that are relevant to her situation. Consequentially, she is reluctant to attend events, activities, or shopping with kids her own age. This fall, she will be attending our local high school with 3,500 other students. Are there some exercises that we can practice to help her prepare for this? We live in a rural area with little or no programs available. She also has some other learning issues.
Your observations of your daughter are astute, and kudos for being her advocate. Single-sided deafness (one normally hearing ear and one ear with significant or total loss of hearing) results primarily in difficulty localizing sounds and hearing in noise, skills that rely heavily on two ears. Public places are typically very noisy and have poor acoustics; therefore the shopping mall, the gym, and the birthday party all may present challenges for your daughter to understand what people are saying.
Though many children with single-sided deafness develop speech and language on track, we know that they are at increased risk for academic challenges, and many, like your daughter, experience frustration and negative social consequences. Speaking openly to your daughter about her hearing loss and encouraging her to advocate for herself will be of great value to her. There are also actions you can take to ensure she receives the best medical management and social and educational outcomes. The first step is obtaining an evaluation by an otolaryngologist (Ear, Nose, and Throat doctor) and a hearing assessment from a pediatric audiologist. It’s important to receive a diagnosis and explore potential causes of the hearing loss to determine if there are any associated conditions or risk for further hearing loss. There may be medical treatment for certain kinds of hearing loss. There are also several types of hearing technology that may be recommended for children with single-sided deafness, such as a bone-anchored hearing aid (BAHA), which is surgically placed in the bone behind the ear, or a contralateral routing of signal (CROS) hearing aid in which a microphone picks up sounds from the side of the deaf ear and sends them to hearing ear.
The next step is requesting an evaluation for special education services from the school system through an Individualized Education Program (IEP). That should include not only assessments of hearing but also the impact of the hearing loss on academics and social and emotional function. This is especially important if your daughter is exhibiting learning difficulties. Whether or not she is determined to qualify for special education services, the school is required by the Individuals with Disabilities Act to provide equal access to communication for your daughter, both in the classroom and at all school events. In cases of single-sided deafness this could mean, among other things, preferential seating, captioned media, and/or the use of an FM system where the teacher or speaker uses a microphone that transmits sounds directly to an ear piece worn by the student. It is critical that your daughter’s teachers be aware of and monitor her performance in class. Request contact with the school district’s educational audiologist, who will be your daughter’s ally.
Last, but not least, your daughter may benefit from counseling. Depending on her needs, she may be better served by either an aural rehabilitationist (speech-language therapist or audiologist) or a clinical psychologist or social worker, or both. Aural rehabilitation therapy focuses on developing listening skills, communication strategies, navigating hearing assistive technology, and self-advocacy, whereas counseling focuses more on social/emotional concerns.
For more information two great links are:
My son has AIED [Autoimmune Inner Ear Disease, a syndrome involving progressive hearing loss]. He began losing his hearing a little over two years ago at the age of 10. He currently has a profound to moderate sensorineural, bilateral loss. The loss is progressive. He obviously has acquired speech and language as a hearing child. What impact am I looking for as we go forward? Prior to the loss he tested at or above for reading levels, now his reading scores are below grade level. He still makes A’s and B’s in all subjects except math. He does struggle. He attends a small public school with no deaf education resources.
With any child with hearing loss, it is important to monitor different areas of development. The first is language. Based on your description, I am assuming he is using auditory/oral skills. You have indicated that his expressive (spoken) language is on target, but it is also important to monitor his receptive language skills. With the progressive nature of his hearing loss, does he still have good access to spoken language? This may impact his overall functioning, especially in school.
I am not sure what kind (if any) of hearing technologies (hearing aids, cochlear implant, FM system, etc.) he is using, but unless he is using a signed-based language, making sure that he has good audibility is key. If audibility is a concern, providing information in a visual form may be beneficial. His educational needs should also be monitored. It sounds like he continues to do well in school and that is great! If you notice that he is starting to struggle, it is important to question why. Is he understanding what goes on in class? Could support services be provided to help him stay on target? It is important to work with his school to make sure his needs are met. I would work with them to see if he is eligible for an IEP or 504 plan (if he doesn’t already have one). Talk with his teachers, administrators, speech-language pathologists, deaf educators, etc. See if they can work to support his need for deaf education resources.
Finally, it sounds like your son may have had an stressful few years. Often overlooked, it is important to monitor the psychosocial impact of his hearing loss. Does he have a good understanding and acceptance of his hearing loss? Does he have a support system of friends, especially any with hearing loss? Feelings of isolation or questions/concerns about his hearing loss may impact his life. Working with a school psychologist may be beneficial. I hope these suggestions are helpful as you work to provide the best for your son!
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.
How many children between the ages of 2 to 3 years old are deaf or have hearing loss? Are there hospitals for these kids?
According to the National Institute on Deafness and Other Communication Disorders (NIH), 2 to 3 children out of 1000 are born deaf or hard of hearing (at least 95% of them born to hearing parents). Another 2 to 3 out of 1000 will become deaf or hard of hearing by age 3 due to severe otitis media (ear infections) or other illnesses/accidents.
It is unclear why you might think they need hospitals, other than for the usual medical reasons, but there are audiology (e.g., for hearing aid fitting) and speech-language clinics (for those who will use spoken language rather than or in addition to sign language) in a variety of settings including medical centers, universities, and private practices.
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?”
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.
My 11 year old son has only become deaf over the last two years, the result of a neurological condition. He has good vocabulary, great speech and rounded communication skills following 10 years of growing up in the hearing world. His reception method is primarily speechreading, supported by some residual hearing. (His deafness is Auditory Neuropathy Spectrum Disorder – which for him particularly impacts speech perception).
Some professionals are recommending that he fully embraces Total Communication, becomes more integrated with Deaf peers and in particular learns British Sign Language. I am not sure. He has no experience of signing (other than basic alphabet), and has a preferred an oral/aural approach. I want to help him learn more about Deaf culture, but I’m keen that we take advantage of his 10 years of open communication to make sure that he doesn’t lose the ‘advantage’ he’s had.
Is anyone aware of any research on “late” presenting deafness in children, and the pluses and minuses of investing in BSL at this age.
It might be useful to separate out the two issues in this questions, that of diversity of language support and Deaf culture.
In terms of the language issue, the first thing to stress is that there are no ‘minuses’ of learning some BSL or Sign-Supported English (SSE) at any age. Nothing will be lost; there can only be gains if you opt for this type of environment. Your son may find BSL useful for learning or for socialising at some point (or a bit of both) or, more likely, find that SSE is a useful mediating tool for mixed deaf and hearing interactions and some support for listening and also literacy development (now or in the future). In either case, learning BSL and meeting and learning with other deaf children will be supportive and will not change his spoken language trajectory, only add a layer of support. Most children that he meets will probably also be using a mix of sign and spoken language for different purposes at different times and you will find in any TC setting that this flexibility is normal and expected and managed by the hearing and deaf adults.
With regard to the other question, about Deaf culture, entering into some sort of TC environment will immediately offer your son access to diverse deaf children and adults. In itself this will extend his understanding of deafness as he sees other ways of being and interacting in an environment where deaf and hearing children and adult rub along together. This is perhaps a more natural way to engage with Deaf community and culture which is entirely contextualised and nowhere near as overwhelming as seeing Deaf culture as a very separate land.
Given, as you say, the advantage that your son has had, I would suggest that keeping his communication options open would be linguistically and culturally positive and enriching if this would sit comfortably with family routines, practices and preferences.
My boyfriend has a 3 year old son who was late on his speech, so we decided to take him to see a doctor. He has seen a neurologist and taken a BAER test which indicated that he had profound hearing loss in the left ear and severe in the right. He is very smart and his motor skills have always seemed high for his age. Were just confused on what are all the options it could be… we have been referred to the children’s hospital, but it wont be for a while. If any one has dealt with this or has any advice we would appreciate it. We’re just kind of lost on where do we go from here. (When he was born he passed his hearing test.) Also he seems to have behavior problems, and the docs say its just his age, but we feel it could be more. He has really bad anger problems and is very moody. Could that be because he can’t hear or should we look into other things like ADHD or bipolar syndrome?
Based on the basic information provided, my thoughts are that your 3 year old boy’s anger and moodiness is related more to his hearing loss and communication frustrations. His behaviors may look like he has attention difficulties (i.e., easily distracted, impulsive, daydreaming). However, these behavior may because he cannot hear and uses his vision for information. Sometimes parents have a difficult time differentiating whether the child’s hearing loss is contributing to disobedient behavior, or, whether the child’s attention and willfulness is creating communication difficulties.
In most cases, parents need to address communication issues before assuming defiant behavior. For example, parents must make eye contact instead of talking to the child from a location where the child does not see the parent. There are many more communication strategies and tips for parents. At this time, seeking out professionals who work with children who have ommunication disorders is a suggestion, especially if your community does not have psychologists who have expertise in working with families who have deaf members. You also might check to see if there is a local chapter of Hands & Voices or contact the American Society for Deaf Children for advice.
I am looking for listening comprehension programs for elementary HH/CI students. Again, I find checklists but few programs for what we used to call ‘auditory training’. All are either for young, early implanted (Dave Sindrey for example) or teenagers (music and phone use). I have used the SPICE program… but is that all?
I am delighted to see that you are investigating different listening comprehension programs. There are several out there and more that are being developed all the time. It is a bit interesting that many of the materials are now being hosted by the Implant Corporations, but in a way it makes sense. They employ the people who do the work and creative aspects. I know that the cost of developing materials is very high and the market is relatively sparse compared to other products, so this may be why Implant Corps can absorb the cost. (example– you mentioned Sindry, and his work is now available through these websites). Here is a resource list of my favorites for elementary age:
Hearing Rehabilitation Foundation materials—many are developed by Geoff Plant and are very good http://www.hearf.org/Materials.html
Hear at Home
Rhythm, Rhyme & Song
Step by Step
Goldberg Stout, G., & Windle J. Developmental Approach to Successful Listening II (DASL)
Tye-Murray, N. (2002). Conversation Made Easy. Three 6-set CD-ROM Training Programs. Central Institute for the Deaf, St. Louis, MO.
Have you tried the CI company’s websites? Each company offers a multitude of materials ranging from reproducible materials, listening logs, listening activities etc, which are not just telephone use or music, and many are free to donload. Activities are appropriate for CI users or Hearing Aid users. See, for example the Listening Room by Advanced bionics http://www.hearingjourney.com/Listening_Room/preview.cfm?langid=1
Cochlear Corporation offers their HOPE website which has so many resources, some to purchase, some are training seminars, some are apps for IPad (it is WONDERFUL) http://hope.cochlearamericas.com/
MedEL offers the BRIDGE http://www.medel.com/us/rehabilitation/ and this site again has items to purchase items to download for free.
*For many of these sites, you do need to register and login in, but that is a small price to pay for the wealth of information you receive. Do register and you will see so many listening tasks and activities.
My sister is deaf and she needs a job. How can we help her and other deaf boys and girls get jobs?
There are many areas to address, such as getting training or education in the field you are interested in, developing a resume, practicing interview skills, and so forth. “Networking” is also one of the best way to find a job. Networking is making contact with people you know and letting people know what your skills, experience, and strengths are. Research has shown that 75-80% of people find jobs through networking.
Job-seekers can network with everyone, everywhere, and all the time. It is important for job seekers to network with friends, relatives, businesspeople, doctors, clergy, clubs, teachers…etc. It can be scary and a challenge for deaf individuals to know what to say. Here are some suggestions, “I’m looking for a job, do you know anyone whom I could contact?, can you think of 5 companies where I should apply?, do you know other people who could be helpful?”.
Networking can help you grow in your area of interest and as a person. Every time you go up to a stranger, talk to them, and get through that little wall of fear, you’re boosting your self-confidence. That confidence is what people see in you even before you communicate.