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.

Social, Emotional and Behavioral Development

I am from Turkey. My son has autism and was born with a profound sensorineural hearing loss. He was implanted at 5 years of age. He is now 12 years old.. He cannot speak or write. It seems there isn’t anybody else like him in Turkey and I cannot get any assistance in dealing with his multiple challenges. I want to teach him speak. How can I do that? How can I help my son?

Question from M.Y., Turkey. Posted September 27, 2012.
Response from James Bebko - York University

I am sorry to hear that you have not been able to access help for your son that you feel has been useful. Certainly deafness and autism each present their own challenges, but together things are much more complex.

Autism alone is associated with language impairments that are often quite significant. Many hearing children who have autism develop only very limited speech, and some only sounds, with no functional speech. The focus for these children should usually be on communication, not speech. This means trying to build communication of any kind, including gestures, manual signs, picture systems, as well as  speech — basically anything that allows the child a chance to communicate with the world around him. And an important part is trying to motivate the child to want to or need to communicate.

Your son also has a profound hearing loss. That is also by itself a high risk factor for acquiring speech. A cochlear implant may make speech sounds more available to him. But even if that were the case, he still may be affected by the language disorder I mentioned in connection with autism. So many, many questions remain that will impact on your son’s ability to speak and to write.

So the situation is complex. But does that mean there is no hope? Absolutely not! With appropriate and consistent support, most children make significant gains in many areas. If it has not already been done recently, I would recommend having an assessment done of your son’s intellectual, language and daily living skills, so you can understand where his skill levels are currently. Then try to find someone who can provide a program of systematic behavioral therapy, with a special focus on communication in as many activities as possible.

I don’t know the availability of services in your area, but hopefully a physician might know of available services, or the professionals who did the implant, or perhaps if there is  a university in your area. Did anyone provide you with support after the implant? That person may also be able to help connect you with services. Two sources that I am ware of online are:  The Tohum Foundation   http://www.tpfund.org/TOHUM/default.asp and The Gunsigi Services  http://www.gunisigichildtherapy.com/cigdem-ergul.php

Both, I believe, are in Istanbul, but hopefully they can connect you with services where you are located. The Tohum Foundation indicates their ” key purpose is to lead and disseminate early diagnosis, education, and social integration services for children with autism throughout Turkey.”

There is a family support group in North America that you should be able to access through   http://groups.yahoo.com/group/DEAF-Autreat   I have met some of these families, and they are wonderful people and many have struggled with similar concerns.

Our daughter is 11 years old and has been educated in a mainstream setting since the age of 6years. Her first language is New Zealand Sign Language (NZSL) although she prefers to use spoken English with some people. Her peers have developed NZSL to conversational level over the years that they have been in the same class.

We are a bicultural/bilingual family with 2 of us hearing (fluent in NZSL) and 2 Deaf. We put a lot of effort into maintaining links to the Deaf community and attend events at Deaf club, however this is not enough. Our daughter has been struggling for the past year particularly in the area of friendships. She prefers to play games that are predictable and physical (i.e., swinging on the bars, and her ‘friends’ have moved on and prefer to sit on the bank and talk! it breaks my when she comes home in tears asking why isn’t there more Deaf children at school and why do the girls just want to talk.. How can we develop resilience in our daughter.

Question from O.F, New Zealand. Posted September 26, 2012.

Yes, being 11 years and preadolescent is tough. Girls are transitioning to a different kind of socialization and talking with each other is really very typical at that age. You say that your daughter prefers to play games that are predictable and physical. If there are organized sports activities that you could enroll her in, that might be helpful. Another possibility is to invite one girl at a time over regularly to be with your daughter and do different things with her. If she has at least one good friend, this will help a bit in getting her through the tough spots.

If there are deaf girls close in age to your daughter in the deaf community, try to connect your daughter with them. Above all, be there for her, tell her you are proud of her, she is special, and you understand what she is going through. That will help her to develop resilience, knowing you care for her and you are there for her, and the two of you can communicate feelings. Here’s hoping the tough times won’t happen too often…..

Do you have any specific statistics on the rates of depression in the deaf community? The consensus seems to be that the rates are higher than in the general population, but I can’t find any specific data on that. I have a deaf daughter entering the teen years, and because she is a signing kid who is mainstreamed, I am very concerned about the social isolation leading to depression. We keep her involved in activities with other deaf kids as much as possible, but it is still difficult.

Question from M.D., Colorado. Posted August 3, 2012.

The statistics on depression in deaf children and deaf adults do vary, but are primarily higher than for hearing peers. I do understand your concern about your daughter. It might help if she could connect with other deaf peers who are also in the mainstream. I suggest contacting both HANDS AND VOICES and AMERICAN SOCIETY FOR DEAF CHILDREN to see if you can find other parents with signing preteens in the mainstream, and perhaps those children can connect via Facebook, Twitter, or whatever…. Also, there are some wonderful summer camps where deaf preteens get together, share stuff, and have fun. It’s too late for this summer, but this is good food for thought for next summer… Camps such as MARK 7 and YOUTH LEADERSHIP CAMP seem to have excellent reputations. The two parent organizations can provide additional resources.

I am seeking current information on research based practices for children who are autistic and deaf.

Question from K.H., Arkansas. Posted April 1, 2012.

This is an important topic, especially with recent data indicating a dramatic increase in the rate of autism diagnoses in the United States. However, research involving deaf children with autism is exceedingly rare, and educational research even rarer. At present, your best source of information (and references) would be Van Dijk, R., Nelson, C., Postma, A., & van Dijk, J. (2010). Assessment and intervention of deaf children with multiple disabilities. In M. Marschark and P. Spencer (Eds.), The Oxford handbook of deaf studies, language, and education (Vol. 2). New York: Oxford University Press.

I have a friend with a nineteen year old son who has had a cochlear implant for years. He is having some emotional and behavioral issues and I am asking if there are support groups, numbers, websites, etc. where the parents could find him some help and also maybe some help for them as well. It would be in the Dayton, Ohio area. Can you help in any way?

Question from C.Y., Ohio. Posted January 30, 2012.

The Miami Valley Regional Center offers a variety of support services for children who are deaf and hard of hearing. Click here<http://www.mcescregionalcenter.com/hearing.html> to find a list of contacts, information on field trips and outings for young people, as well as a list of resources specifically for families. If you act quickly, your friend’s son may be able to join a group heading to see the Dayton Gems at Hara Arena on February 25th. Use one of the contacts listed on the website to find out more information.

Another local resource for your friend would be the Deaf Community Resource Center<http://www.dcrcohio.com/DKTC1109.html> in Dayton, which offers a Deaf Teen and Kids Club.

State resources include Ohio Hands & Voices <http://www.ohiohandsandvoices.org/>, a parent support organization, as well as the Center for Outreach Services <http://www.ohioschoolforthedeaf.org/outreach>. The Center for Outreach Services provides professional development for school districts and opportunities for families to come together for various events. If your friend is interested in learning more about transition and life after school, he/she may be interested in attending an upcoming conference focused on this topic co-sponsored by the Outreach Center and Cincinnati Children’s Hospital. Contact the Outreach Center for more information.

Right now I’m searching for something related to learning disabilities for those who are Deaf/HOH. So far it’s proving difficult to find. Does anyone have any links they can share?

Question from W.B., Somewhere USA. Posted January 26, 2012.

This is difficult in the U.S. because deaf (or blind) children are not supposed to be dually classified as having learning disabilities. Other countries are a lot more realistic. Probably the most current resource would be Edwards, L. (2010). Learning disabilities in deaf and hard-of-hearing children. In M. Marschark & P. E. Spencer, The Oxford handbook of deaf studies, language, and education, Volume 2 (pp. 425-438). New York: Oxford University Press.

My son is 23 and was diagnosed at the age of 13 with a bi-lateral moderate to severe hearing loss. He was able to cope with the loss in middle and high school without the assistance of hearing aids. We later found out he taught himself how to lip read.. In college the loss became more noticeable and emotionally and socially hard for him to accept.. He did not continue his college career or football career somewhat due having to accept the disability. Do you have any suggestions for counseling and/or networking organizations that you can recommend to help him become more educated and socially involved with the hard or hearing/deaf community?

Question from D.B., Maryland. Posted January 8, 2012.

There are a few missing pieces of information that would make this reply more relevant, for example, Was your son late deafened or was the diagnosis just made later in his life? What was the impact on his earlier studies? What is the etiology of his deafness?

You said he was ‘Coping with the loss…w/o the assistance of hearing aids’. This could mean many different things. How did he learn to cope with the loss of his hearing or just the fact that he was different? How did he cope with the frustration of people thinking he had a cognitive impairment instead of a hearing loss? Despite the good efforts to teach himself ‘how to lipread’, I suspect there may have been some gaps in his learning and understanding along the way. If he is like other deaf/hoh students, I am sure he discovered strategies to cover up for the gaps in his learning and to not look ‘stupid’. One can learn to ‘fake it’ when in a learning environment or interacting with others but we still are not getting the information that is being presented.

I suspect that in addition to identity issues and coping with the loss of hearing, his academic challenges continued into college. College is immensely difficult all on its own. Complicate it with the hearing loss and gaps in social and academic knowledge, and you have the potential for significant delays and misunderstanding along the way….not to mention the impact all this has on his sense of self worth and beliefs in what he is capable of learning and doing in life. His decision ‘not to continue his college career’ is quite understandable, given the tremendous loss and learning struggles he must have encountered.

I also might want to point out the difficulties and loss that you, as his parent must be experiencing. Adjusting to this kind of loss of the hopes and dreams all parents have for their children can be daunting, difficult and lengthy. On the other hand, you may be well adjusted and accepting of your son’s situation and are there to offer guidance and stability while he makes his journey through life.

At this point, finding a therapist who can help him deal with his losses and devising coping strategies for navigating through life would be of tremendous help. A counselor or therapist in the high school or maybe even at a local community college that has knowledge of services for deaf/hoh students might be an idea. In addition, it makes sense to get in touch someone from the ‘disability services office’ at a college to assist with discovering which accommodations can be made for him at school, if he decides to return to college. There was a day and time when deaf or hard of hearing students had to ‘make the best’ of the situation w/o interpreters, notetakers, c-print and tutoring, but those days are long gone. Colleges offer a wide variety of services to help students get the information they deserve to be successful in college. Please feel free to contact me via email if you would like more information.

I am an SLP and I have a student with bilateral cochlear implants. He is 15 now and received his 1st implant at age 3 and his 2nd implant at age 13. In his world, he has always been the only hearing impaired person. Do you have any suggestions for educating him and exposing him to deaf culture?

Question from N.W., New York. Posted December 1, 2011.

If he is comfortable with his current identity and the purpose of exposing him to deaf culture is to give him an expanded sense of his identity then you could have him skim through Jack Gannon’s publication of Deaf Heritage  ( NAD, 1980. Silver Spring, MD).  This would give him a historical sense of community, culture, and communication issues that help him relate to the experience of being deaf.

If he uses sign language (or wants to), identifying a mentor who could take him to a deaf sponsored social event could be beneficial.  Or, there may be a cochlear implant group the meets in his local area that may be of interest (yes, many kids with implants also sign).  Also, depending on his school environment there may be a course offerings there (or at a local community college) concerning the deaf experience that would help him explore his a sense of personal and/or cultural identity.

More importantly,  his comfort with self, his curiosity about the deaf experience, and what intrinsically motivates him at the current time to learn about what it means, for him, to be deaf may  involve a process of  self-determining what, if anything, he is ready to explore at the present time about his lived experiences.

I am an aide in a kinder classrom with Deaf Ed. In my classroom I am working with a very sweet 5 yo boy who is profoundly deaf. His parents are hearing and have no communication with him. He came to school 2 years ago with zero language and has worked to learn some, however, with no parental support it has been a slow road. He has lately been acting very strange. He cannot sit still, at all, and constantly jumps around and flails his arms (this sometimes hits other students). He has no perception of harm to the other kids. He recently started to look behind him and point to a specific area of the room and act terrified. He pushes his nose down and looks at me then points. He frequently tenses up his whole body and when we try to calm him down it does not work. This is my first year working with him and he and I have bonded. He will listen to me when I tell him to be quiet and is able to say short phrases like thank you or bathroom or sorry. But he is unable to explain anything about what he is seeing or why he gets tense. I strongly believe he is hallucinating but obviously have no way of finding out what he is seeing or hearing. Is there something to how he is acting? Is there a way for me to elicit more information out of him without making it too hard on him? He tends to get frustrated easily and will stop making any kind of eye contact. I want to help him in any way I can.

Question from J.S., Texas. Posted October 15, 2011.

The youngster definitely needs to be seen by a psychologist and/or a psychiatrist, and preferably someone familiar with deaf children or children with minimal language.  The case is certainly complicated, but I would not advise working to elicit more information from him or trying to have him “explain” what he is experiencing. He may have no ability how to do that.  Children need to know, however, that someone will help them when they are frightened, or distressed.  In school, you (the writer/aide) can be most helpful by being there to calm him when he is frightened, notice what tends to make him more distressed and acting early in the process to calm him and focus him on something more positive.  Keep close track of where and when he gets most upset and what is happening at the time.  That can be helpful in intervening before he gets worried and in helping a psychologist evaluate what is going on.

When working with deaf students from hearing families without a lot of signing skills, what do you suggest for imparting proper social behavior and emotional stability for interpreters? The students seem to look to the interpreters as substitute parents or as friends. Sometimes they come from broken and/or poor families.

Question from J.K., Pennsylvania. Posted June 7, 2011.

One of the important concepts for the educational team serving deaf and hard-of-hearing studentsin inclusive settings is that the primary ‘client’ in this setting is the teacher, and NOT the student.  That being said, it is imperative that the interpreter develop a relationship with the child, much like ANY educator in a classroom setting would develop.   This, however, is NOT in leu of the relationship the educator must ALSO develop with his or her deaf student.  The educational interpreter is only one adult professional in the inclusive setting.    The regular educator, the guidance counselor, the itinerant teacher, the speech-language pathologist, and the educational interpreter not only have educational-literacy goals for this ‘included’ child/student, but also *must* work as a team providing the social-literacy opportunity and support needed for the D/deaf child to become an active and healthy participant (versus depository) in the classroom community.    Behavioral and communication guidelines need to be clearly charted during the IEP meeting and shared with all professional staff, the student, and the student’s primary care giver(s).