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.

Language and Communication

I have a son who is deaf…or so we thought. We had an ABR done recently, and he has no permanent hearing loss. Great news! I still feel that he has hearing issues. Small ear canals, frequent ear infections, but no permanent hearing losses. He also has oromotor issues that are congenital. He can’t drink, can’t eat more than purees, drools, right sided weakness, low tone, etc. He’s had 4 oral surgeries. It makes sense that he can’t talk. He did say his first word this summer, “Go!” So, I want him to learn ASL. He started at 30 signs 6 months ago, and now he has a vocabulary in excess of 250 signs.

We had an IEP meeting last week. brought 3 doctor reports and a speech therapist report that all indicate that he needs to be taught sign language in his classroom. The school “accepts” but will not teach ASL. They want him to use an iPad with pictures. I feel that all of his gains in speech are linked to his sign language acquisition.

I did reach out to the school for the deaf. We are signed up to do some of their outreach programs. He’s not deaf, so they won’t/can’t help us. I want my son in a Total Communication class. There is one about 20 minutes from our house.

How can we get what (we feel) our son needs?

Question from M.G., New York. Posted September 7, 2016.
Response from Barbara Raimondo and Louis Abbate

If a finding of special needs is found (which clearly is the case) then the child is eligible for special education. At that point, it does not matter how the school “feels” about the recommendations, the school has to provide services based upon the assessments to provide access to the curriculum. Rejecting sign language because he is hearing is not an appropriate determination if the assessments indicate that as an adoption that will facilitate access to instruction and social interaction. This is a child with multiple needs and the recommendations that were cited do not come close to the extensive level of support the child will need to be able to be successful. Pull out services will not suffice at least not during his early childhood years and the need to intervene comprehensively to promote development is necessary.

So, first, the school should assess the child’s language level, both receptively and expressively. This is the starting point. Then goals should be developed based on the needs identified during the assessment. The overall goal should be achievement of age-level language skills. Age level skills will enable him to access the general education curriculum. The Individuals with Disabilities Education Act emphasizes age appropriate skills and access to the same educational material that other children receive, that is the general education curriculum. In other words, the school should be attempting to get the child’s skills to the same level of his peers so that he can participate in the classroom similar to his peers, to the extent possible. Will using an iPad with pictures do that? It’s hard to see how. The fact that you can show that he is succeeding using sign language is helpful.

Once goals are developed, then the services should be determined, such as teaching sign language by a trained teacher. After the services are agreed upon, then placement is made. The placement must be based on the child’s needs and services. If there is a total communication class that would fit the method used in the class, that would seem to be a more appropriate choice. If there is any capacity for spoken language, a simultaneous communication approach may be better in the long run.

Sounds simple, but I know when you are advocating for your child it is not easy. In the end, litigation may be the only way forward, with the experts lined up prepared to make recommendations based on their findings and to have the school system respond on how they will fulfill the requirements. Hopefully, it will not come to that. Meanwhile, a few tools you can use:

First, if you believe that the school has not done an appropriate assessment of his language skills you should request they do (or re-do) that right away. Also, are his goals consistent with getting him to the level of his peers (and helping him continue to progress)? They should be.

Second, as for placement, when a school refuses to change the placement of a child (or for other purposes), it must inform the parents of the reasons. This is called “Prior Written Notice.” See the form developed by the U.S. Department of Education at http://idea.ed.gov/download/modelform2_Prior_Written_Notice.pdf. As you can see, the school must explain the reasons why it refuses the placement, based on evaluation procedures, assessments, and records. You can request that the school provide the information required on this form.

Another law that applies in this case is the Americans with Disabilities Act (ADA). Among other things, that law requires schools to ensure that students with speech disabilities can receive information from, and convey information to, others. This communication must be as effective as communication with students without disabilities. The U.S. Department of Education has issued guidance on the ADA and effective communication at https://www.ada.gov/doe_doj_eff_comm/doe_doj_eff_comm_faqs.htm. Under the ADA schools must give “primary consideration” to the request of the student or parent.

My son was implanted at 2 years of age with a CI. He is now 3 years old. He was diagnosed with Auditory Neuropathy Spectrum Disorder and he is severely to profoundly deaf. They describe his disorder like a static radio most of the time it’s static but every once in a while he hears something but not enough to form speech or understand what a sound is. The CI was not a guarantee that it would work, but as my husband and I are both hearing and no one else in the family with hearing loss we figured we should give it a try. We have also been signing with him since he was 15 months old. Our son is now in school, and at his last IEP meeting we were told that they probably don’t have the funds for an interpreter or enough children to start a deaf class. I don’t know how to get my son the education he needs! I just don’t think it’s fair. He is very smart, very visual, and has an amazing memory. What can I do and how can I fight for my son’s education??

Question from C.D., Florida. Posted July 26, 2016.

You indicate that your son has auditory neuropathy and received a cochlear implant at age two. Some children with auditory neuropathy will benefit from cochlear implants, but most will need sign language for the very reason you described—auditory neuropathy produces static rather than a clear auditory signal, making it very difficult or impossible to access spoken language auditorily, even with a CI. It sounds like you have been doing everything right for your son by providing sign language since he was 15 months old.

I was sorry to hear that the school’s IEP team decided not to provide sign language for your son. Your son is entitled to a free appropriate public education (FAPE) under the Individuals with Disabilities Education Act (IDEA)—the federal law which governs every public school district in the U.S. For deaf students, the IDEA specifically states that communication needs, including the need for sign language, must be considered by the IEP team when making educational placement and services decisions. Furthermore, an IEP team may not use “lack of funds” as a reason not to provide interpreting or any other special services required for him to obtain FAPE.

The IDEA grants parents of children with documented special needs, including deafness, the right to appeal an IEP team decision. Every IEP team must, by law, provide parents with written procedures for appealing an IEP team decision. You should request the written procedures from your school district immediately and file an appeal according to the procedures described in that document.

In my experience, school districts often do not understand the communication needs of deaf children. However, you can and should advocate for your son through well-established legal procedures. In so doing, you will also be educating the school district – paving the way for future families with deafness—as well as for your son. I encourage you to be confident and persistent, because your son has the right to a free appropriate educational program, which in his case should include sign language.

My 8 yr old daughter has sensorineural profound deafness. She’s using hearing aids and is at par with her hearing friends in mainstream education. She’s a bright child with immense understanding and grasping power. English has been her second language here, her first language was her mother tongue.
We are relocating to USA this year. Her language skills in English are comparatively low, say 30-40% of a hearing child in US. I would like to know the basic expectations of school from her so that I can make her understand the needs and prepare her accordingly. Likewise, what will be the process to take her admission in mainstream education school?

Question from U.D., India. Posted May 18, 2016.

Depending on where you move in the United States, there are two services I would seek. First, the staff at the school will need to meet with you to decide if your daughter is eligible for special education services. During that meeting, the school will review your child’s hearing levels from her audiogram and her school performance up to this point. If they request to do any testing, ask them to complete the testing in her first language and in English. This will give the school team an idea of how to proceed with her education. If you believe that support from a teacher who specializes in working with children who have a hearing loss would benefit your daughter, let the school know that you want a teacher of the deaf and hard of hearing at the meetings. A teacher of the deaf and hard of hearing has been trained to work with children who have different types of hearing loss and who communicate in different ways. This teacher can work with the school and the classroom teacher to make sure that your daughter is getting the education she has a right to under the US law. Second, I would ask the school for access to a teacher who specializes in teaching students who are learning English as another language. This teacher will have been trained specifically to work with students who have first languages other than English. This teacher along with the teacher of the deaf and hard of hearing can work with the mainstream or general education classroom teacher to make sure that your daughter’s education is optimized. In my personal opinion, this team of teachers bringing their knowledge together would be a great start for your child.

I have a 6 year old with CIs, implanted at 11 months; he has perfect speech. We have a IEP meeting soon, and they want to discontinue speech support. He is mainstreamed and has difficulty staying focused in the classroom. Any help at all we can get for his meeting, we would greatly appreciate. Currently we have a ToD an hour a day five days a week, an educational Interpreter, and right now speech 1 day a week for a half hour in a group setting. That is what they are looking to discontinue.

Question from L.W., New York. Posted March 5, 2016.

Speech Language Services are not only limited to working on speech production. Our scope of practice includes vocabulary development, pre-teaching concepts, teaching advanced language structures, phonological awareness skills, comprehension of language as it relates to processing text and creating text, executive functioning including memory, judgement and pragmatics. It is rare to find a deaf child who has skills in all these areas that develop without careful intervention and monitoring. Speech-language clinicians are intrinsic to optimal development of these skills, and this is the tack I would take in this meetings. [Try to find an advocate who can support this in the IEP meeting and make sure it is written into the program.]

I really want to know if the Informed Consent for a Clinical Trial is only read by a deaf person or there is an interpreter during the procedure who is able to help the volunteer to better understand what is written. Is a Video Interpreting (relay) service (VIR) usually employed or a Computer Assisted Realtime Transcription (CART) service? Do you think that a platform with VIR service could help the deaf person’s understanding?

Question from V.Z., Italy. Posted March 1, 2016.

Essentially, the answer to your question is “it depends on the individual.” For most deaf individuals, at least in the United States, reading an appropriately-worded informed consent document is sufficient. It is the responsibility of both the researcher/medical professional and their institutional ethics review panel to ensure that the document is, indeed, “appropriately worded.”

For deaf individuals with lower levels of literacy, of course a sign language interpreter would be helpful (either live or via VIR). The kind of interpreting, in that case, also would need to depend on the individual, because there are deaf adults (as well as children) who do not have fluent sign language skills. Those who are low-language, for example, would need very different kinds of interpreting than those who are skilled in Italian Sign Language. Deaf individuals who are “oral,” also might need support with an informed consent document, either through further explanation or more simplified language.

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) .

Question from C.H., British Columbia. Posted February 18, 2016.

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.

I work with a profoundly deaf junior (16 years old). It is evident that he has severe processing problems because he cannot do the following:

1) Answer comprehension questions at the premier/pre-primer levels/1st grade (he can decode passages at the first grade level according to a reading specialist)
2) Express himself well or gather his thoughts
3) Has no inkling about the meaning of a thesis statement
4) Does not understand figurative language
5) Often misunderstands a teacher’s questions and has great difficulty following group discussions
6) Has limited peripheral vision
7) Has great difficulty retaining vocabulary words

Are there special tests to figure out what is going on with him? All of his previous IEPs indicate that he has been reading at the first grade level. There is no evidence of significant improvement in his reading skills.

I have exhausted the reading and writing strategies I used with this student. What seems to be effective with him is the Reading Milestones program that has very simple, direct questions. It does not include figurative language at all. He can write very simple sentences—not compound or complex sentences.

Question from B.D., Virginia. Posted November 4, 2015.

It sounds like you have made some important observations about your student and are warranted in your concern about the lack of improvement in his skills. From the areas of weakness that you have shared, however, it seems likely that there is something going on that is above and beyond a reading problem. You describe concerns with both expressive and receptive language skills, retaining information, and visual weaknesses in addition to specific reading skills of decoding and comprehending written English.

Unless one has been done recently, given the lack of progress in academic skills and some more general areas of concern, a comprehensive psychoeducational or neuropsychological evaluation that includes assessment of language seems warranted in order to identify the specific cause(s) of the lack of academic progress. This will help to rule-in or –out an underlying language disorder or other cognitive issues that may impact reading. With this information, the student’s educational team will likely be able to better plan more specific academic accommodations that target the underlying areas of difficulty. Given the complexity of this profile, an evaluator with experience assessing deaf children is highly recommended.

With all of the said, it sounds like you are struggling to find appropriate resources to support this student’s reading in your classroom. Again, while the best first step is to get a better sense of the underlying difficulties in order to best support his overall academic learning, the following book may off same helpful strategies to use in the classroom to target various reading skills, including deciding, vocabulary building, fluency, and comprehension: http://www.proedinc.com/customer/productView.aspx?ID=3971. Additionally, the Clerc center offers some specific reading resources that may also be of help: https://www.gallaudet.edu/clerc-center/info-to-go/literacy/literacy-it-all-connects/reading-to-students.html.

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.

Question from Y.D., Nigeria. Posted August 18, 2015.

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.

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.

Question from L.W., Missouri. Posted March 3, 2015.

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!

We are constantly searching for appropriate assessment tools that address all the developmental areas of young children without penalizing the child because of the language acquisition differences. What do you suggest? We serve children ages 6 weeks through kindergarten with deaf, other communication disorders and hearing siblings all in the same classrooms.

Question from J.P., Oklahoma. Posted February 24, 2015.

This is a tough one, because communication delays and disorders potentially can affect all areas of development and/or give the appearance of doing so. I expected that most states would offer guidance in this respect…but have been disappointed. The New York State Department of Health does offer information ranging from dealing with the communication challenges per se to cultural issues and parent involvement in assessment. Both West Virginia’s and Minnesota’s Departments of Education offer listings of assessment tools for deaf and hard-of-hearing children that appear likely to be useful for a broad range of children.

A couple of book suggestions: In 2008, the Journal of Pediatric Psychology published a special issue on evidence-based assessment of children with various disorders. You could write to individual contributors to that issue who might seem pertinent. In the general area is Cohen and Spenciner’s Assessment of Children and Youth with Special Needs, 4th Edition. Specifically with regard to deaf and hard-of-hearing children is Edwards and Crocker’s Psychological Processes in Deaf Children with Complex Needs – An Evidence-Based Practical Guide.