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!
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.
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.
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 son is five years old. He is hearing impaired and has worn hearing aids since he was two. He is well-educated with ASL and so are we. He has the worst behavior problems at home if things don’t go his way; he starts throwing things, screaming, crying, and hitting anyone in his way. We don’t know what to do anymore. Please help.
One of the first questions I would ask is regarding language. Often kids who have difficulty understanding or expressing themselves (verbally or in sign language) resort to behaviours to get their points across. Does your son have age-appropriate language acquisition? If his language is age-typical, then my next consideration is that these behaviours may be indicators of a mental health issue, and he should be assessed professionally by someone knowledgeable about deafness and mental health. Finally, it is not uncommon for children to act differently in different settings. Home is usually very unstructured compared to school and he may also be repeating the same behaviours there if he found them to be successful at home in the past (that is, getting his way). You might check with the school and see if he behaves differently there. If so, his teacher might be able to give you some advice. There may even be a school psychologist who can advise you.
Our five year old son has mild to moderate bilateral sensorineural hearing loss. He has had hearing aids since he was 2 1/2 years old. He is speaking very well due to all the support he has received from speech therapists and deaf educators over the past two years. When he was three we put him in two different half day programs for children with hearing loss. He seemed to flourish in those settings. However, he recently began Kindergarten at a school that specializes in D/HH children, but is mainly hearing students. He is one of two in his class who has hearing loss. We have begun to see behavioral issues that he did not have (or at least did not rise to this level) at his preschools. At one point he pushed a little boy and pulled his hair and spit on him. These behaviors are odd for him outside of the home. (He has a three year old brother who he sometimes hits). He has also began to act very odd when he leave certain places. For instance, last night we went to his open house at school and he was doing fine, but when we were getting ready to leave he began to lay on the ground and laugh and would not cooperate. He recently did this at a park as well. We also continue to have problems with him in the bus line, where he is hitting/pushing kids.
Since this is all new for us we are unsure what measures to take. He has a deaf educator who is in his classroom in the mornings and she has been very helpful. I should also mention that this summer we had a baby and moved to a bigger house, so he has had a lot of change. I appreciate any information that you might be able to offer.
I must start by saying that without spending time with your son and looking closely at everything in his life, it is impossible to explain what is happening with any level of confidence. What I can do is offer some thoughts on possible explanations given what you have described.
My first thought is that you’ve described a number of quite significant changes in his life. He is now in a different sort of school program, he has a new sibling in the family, and is living in a different house. Even with all the best preparation, that can be very hard to accept and adjust to. It also can leave a youngster feeling like life is not in his control. Some of the behaviors you’ve described seem to be connected to exerting control – pushing other kids out of his way, not transitioning out of an activity, and those sorts of things. This is one possible underlying theme.
I’m also struck by the change from being in a school program for kids with hearing loss to one where most of his peers are hearing, even though the program specializes in kids with a hearing loss. It’s wonderful that he has made such good progress with his aids and speech therapy, but it is critical to keep in mind that a youngster with a hearing loss living in a hearing environment expends a great deal of energy over the course of a day. Even the most skilled oral communicators will admit to being completely tired out at the end of the day. Constantly working to fill in the blanks in the sound stream of language can be exhausting. When children are stressed or simply very tired, their ability to cope with everyday stresses of playing with peers, learning, moving in and out of activities is diminished. While you described some problems at home, such as difficulties leaving the park, many of the issues appear to involve school in some way. This would suggest examining the challenges of the new school.
Some ways to address this include giving him as much reasonable decision making power as is possible, and giving lots of warning about transitions. If he feels many things have changed without his “input,” one way to help with that is to emphasize the things he can make decisions about, such as clothes to wear, games to play, and any of the normal choices 5-year-olds make in a day. For managing school stresses, perhaps some quiet times during the day when he need not worry about what his classmates are saying, or some structured time where the communication is adult mediated and made clear to all could be integrated.
If these issues do not resolve with reasonable understanding and support, it would be wise to involve the school counselor or school psychologist for help with further evaluation to understand more deeply what might be happening.
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.
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.
Is there any good research into the psychological impact on deaf children who are in mainstream education? I am a mature student and a parent of a deaf child in mainstream and am undertaking a research project into this topic with a view to eventually working with deaf children.
This seems like an easy question but, as with many things in deaf education, the answer is a bit complex. There is an “older” (1980s-1990s, ancient!) literature from the United States indicating that deaf children in mainstream settings were more likely to report feeling lonely and isolated than those in schools and programs for deaf students. While that may still be true in some cases, the fact that the vast majority of deaf children in many countries are now in mainstream classrooms means that the dynamic now is rather different.
For reasons that are unclear, there is very little research on the social-emotional/psychological impact of mainstream education on deaf children conducted in North America (but see research by Shirin Antia and her colleagues). Most of the work in that area is being conducted in Europe, with some in the UK, Hong Kong, and other countries. The recent Teaching Deaf Learners conference in Amsterdam had a number of presentations on the topic, and you can identify/contact the authors by looking at the program. A book based on the conference (Educating Deaf Students: Creating a Global Evidence Base) is due from Oxford University Press, but not until 2015. It will include reviews of work on various aspects of psychological functioning of deaf students in mainstream and special settings. In the meantime, an “advanced search” of the Journal of Deaf Studies and Deaf Education looking for “mainstream” in “title or abstract” will yield a variety of relevant articles. You can reach the authors through the site.
Our son was born deaf and has cochlear implants. He is now 6 years old and in regular classroom with assistive devices. He seems to have a real trouble focusing and some issues with getting angry, upset, crying at times and arguing with adults. We are wondering if there are things we can do to help him gain better control of his emotions and get better focus.
It’s very important to remember that using assistive listening devices can be extremely stressful and tiring. Cochlear implants have become very sophisticated and can be highly effective for many children and adults. But, many children and adults still need to work quite hard to make sense of the auditory input they are receiving and process all that information. School can be tiring, too. So, one first step is to look at the times and situations that are most difficult for the youngster—the situations that bring up the most tears, anger, and arguing. These may be times when he has been listening and working extra hard to hear and understand everything and everyone and is tired and worried that he hasn’t gotten it all.
Tracking the times and situations that are most difficult can also help teachers and parents to intervene before the child has reached that peak of frustration and can no longer regulate their emotions (leading to crying, arguing, and anger). Once a child has “gone over the edge,” so to speak and is very upset, adults can mostly just help them gain control again. That might mean getting away from the situation, waiting out the outburst, keeping them safe, etc. But, if adults are able to recognize the warning signs, then intervening before control has been lost is possible. Helping children learn to manage difficult times while they are still in control of their emotions can be done through conversations, modeling of appropriate behavior, offering alternative activities, and basic empathic statements. And always remember to show children things they can DO when upset, as opposed to telling them what they should not do. Not doing things is much harder than having an appropriate alternative.
I have a 5 yr old son who was born deaf; he has a serve/profound hearing loss. He has limited sign language and no speech. His behavioral is the problem. I just can’t seem to control him – he is so active. Is there anything i can do to help him so he can be able to focus more and be able to learn?
Language is crucial to children learning how to regulate their emotions and their behavior. In children with very limited language, great patience is required from adults, as these children are missing an important tool. There is no simple solution, but Ross Greene has argued that all children want to be good and would be good if they could. Behavior that is not cooperative or compliant is not because children want to misbehave, but because they cannot organize to do what is asked. The adult’s job is to remember this point (easier said than done!) and help them learn to organize. The area of psychology that has had the greatest success dealing with behavior difficulties in children with low levels of communication has been Applied Behavior Analysis. This approach, though, requires effort from the adult who is practicing it, reinforcing children for approximations of cooperative behavior and not allowing and certainly not reinforcing uncooperative behavior. There are specialists in most urban areas who provide ABA services, both in schools and in home; you might ask about that.
Additionally, use pictures, drawings, or photos of the child doing the desired activity and keep them handy (laminating them helps) to point out to the child what is desired of him along with rewards that will be given immediately upon cooperation. Start with very low expectations so that children are rewarded quickly, easily, and frequently and then gradually make the expectations greater. Remember also that children often have much more energy than adults, so finding ways for a child to expend his or her energy before asking them to do more quiet activities (e.g., household chores, homework, coming to the dinner table) will be important. Rewards should be things that the child truly enjoys and that can be given easily and cheaply. No need for trips to Disney World, but play time with particular games, favorite foods, or other enjoyable activities should be used. Rewards may need to change as well since children will tire of things.
This approach does not always work quickly and in fact when first employed, behavior tends to get worse as children believe they must be more uncooperative to get what they got before. But, with time and patience, it can make a difference.