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 have a son who is 3 1/2 years old. We found out this year that he is profoundly deaf in his right ear and has a moderate to severe loss in his left. He has a hearing aid in his left ear. He has hardly got any speech, his balance is very poor, and I’ve been told he’s a year behind for his age. Since he has got older, he has started to get very angry – kicking, biting, hitting, and throwing things at me; sometimes he hits his head on the floor. I’m getting worried. Do you think he could be autistic as well as being deaf? It really is starting to worry me. My paediatrician has said that it’s all frustration. I don’t go out with him because of the looks I get off of other people and because he has no sense of danger.

Question from K.M., England. Posted December 9, 2012.
Response from Cathy Chovaz - King's College, University of Western Ontario

When children don’t have language yet they express their needs or wants through their behaviour. In terms of your son, the paediatrician might be right that he is frustrated. But knowing that won’t just stop the behaviour. Your son should be assessed to determine if his hearing aids are giving him the best amplification and. even more importantly, your son needs to have language in the most accessible modality.  If an oral approach is not working, do not waste time! Begin using a more accessible language like sign language. In addition, your son should see a clinical psychologist familiar with deafness to assess if there are other issues that need to be addressed.

My son is 5 1/2, hard of hearing, moderately-severe to profound, bilateral aids since he was 4 months old. He is currently in a mainstream school, and also knows ASL, although he doesn’t like to use it. His reading skills are incredible – he has read dozens of “chapter books” since he learned to read last winter/spring. He has really good fine-motor control. But his pencil skills however are truly awful, well behind everyone else in his class, and he is even very unwilling to even try printing/tracing letters. He is on the waiting list to see the school board OT about a possible dysgraphia diagnosis. Is there any connection between his written language problems and his hearing problems? Or between his written language problems, and his unwillingness to use ASL?

Question from J.B., Ontario. Posted October 18, 2012.

It appears that your son’s problem is not a written language problem. Instead, as you have described it here, the problem is with his handwriting. If his reading skills are strong, then his written language skills may also be strong. However, you and his teachers will need to bypass handwriting in order to accurately assess his written language knowledge and skills. That can be done easily with the use of magnetic letters and/or the computer. He can construct his stories using magnetic letters or he can type his stories, instead of trying to print them.  I used this approach with a kindergarten student who was hard of hearing and also had cerebral palsy and could not write with a pencil. She was allowed to compose her stories using magnetic letters until she had learned the alphabet and then on the computer. The approach was highly successful.

I cannot say whether your son’s handwriting problem is related to his hearing loss. A consult with the school’s occupational therapist is definitely in order.

With regard to his unwillingness to use ASL, that is most likely an identity issue. Most children, regardless of age, do not want to be different from their peers. Because your son is mainstreamed with children who are hearing and use spoken language to communicate, I am not at all surprised that he doesn’t want to use ASL.  My best guess is that he wants to be like his peers and use spoken language to communicate.  Using ASL sets him apart from his peer—makes him different—the very thing children try to avoid.

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.

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.