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Fostering Self-advocacy in Elementary-Aged Students with Hearing Loss

Fostering Self-advocacy in Elementary-Aged Students with Hearing Loss
Marcia Zegar, Ann Baumann
July 9, 2012
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This article is sponsored by Cochlear Americas.

Editor's Note: This article is a transcript of a live seminar presented on AudiologyOnline.

Marcia Zegar: Ann and I are really honored to provide this training. We would like to thank the many children with hearing loss and all the families that we have worked with throughout our careers for all that we have learned through them. Today you are going to have an opportunity to meet a few of our students through photos. We would also like to express our gratitude for all of the excellent teachers and specialists who are part of the team, all of who are committed to providing the best service possible for the students we work with.

Ann Baumann: We hope this seminar will reinforce concepts you already know, encourage you to think about the complex layers involved in intervention, and also provide you with some tools, resources and new ideas for fostering self-advocacy in students with hearing loss.

Marcia Zegar: Ann and I are going to be discussing self-advocacy development in children, along with the progression and challenges presented due to the complex parameters of hearing loss. You will be introduced to the instructional concepts of coaching and gradual release of responsibility in the student, the family, and school personnel when working with elementary-aged students.

Ann Baumann: We will guide your thought process to think along the continuum involving the operator, the student, the equipment, the student's assistive listening devices, the listening environment, which would be various environments in the school setting, and special factors including the communication partners in those environments. We also have provided a resource list for you to consult after this introductory course.

Self-Advocacy

Marcia Zegar: We are going to start with some general concepts of self-advocacy, which would include understanding one's strengths, weaknesses and needs in a variety of social settings. Self-advocacy includes an understanding of accommodation options along with why and when those accommodations are helpful, and a clear understanding not only of one's rights but also one's responsibilities.

Ann Baumann: Hands & Voices is a nationwide non-profit organization dedicated to supporting families and their children who have hearing loss, as well as the professionals who serve them. Their Web site is an excellent resource, and we have included their description of self-advocacy for your consideration.

The perspective I have taken in preparing for my portion of today's talk has been from that of a family who started with auditory-verbal therapy from the beginning. For some of you, that may not be your experience. There are a lot of potential issues we will not be able to touch on in this short talk, so I hope you will take these general ideas and find applications in your case load.

One of the premises on which we will base this course is coaching and role release, which is foundational to auditory-verbal therapy. This starts with the therapist to the family, and then as the family is empowered with knowledge and skills they move from the family to the community involved with the child. The attitudes of those who surround the child from these early days will have a great impact on the child's sense of self and knowledge about his needs.

Strong self-esteem and self-confidence supports the development of self-advocacy skills. The skills the parent learns in these early years and then uses to advocate for their child will be modeled repeatedly for the child. It is our actions that speak much louder than our words for children. Helping others to understand the multiple parameters of hearing loss is an ongoing mission supported by specialists. Self-advocacy skills, however, begin in the home.

Self-Talk

We wanted to highlight the use of self-talk. Self-talk can be a very powerful tool both for parents and specialists as they problem solve with the child. Talking about how to make a message more audible can be as simple as saying, "Come on! Let's snuggle up close to read this story. It is easier for you to hear my voice when I am close to your cochlear implant." Self-talk during daily listening checks helps the child become familiar and comfortable with the parts of the device and also gives the child vocabulary to talk about the device and the sound quality. Develop vocabulary that helps describe what the child hears; this helps the child to identify the problem and be clear about their needs.

Building the child's skills as an active participant in daily listening checks is important. Some children will be able to complete a conditioned listening task using the Ling 6 Sound test by 18 months, but it is generally expected that all children, given no other cognitive complications, will be able to complete a conditioned listening task by 3 years. Throughout the day, parents and teachers self-talk as they solve problems. Some days there will be many problems with the components of a child's listening technology. We have all had those days. Verbal problem solving becomes natural and effective as we practice it, and it is a natural way to build the child's ability to know about other's perspectives and how they think.

Let's talk about how we extend strategies from home to school. At home, families are doing proactive measures that become second nature: turning off the television, running the dishwasher at night, adding rugs or pillows to stop reverberation, getting closer to the child's ear. Once that child makes the transition to preschool, the parent often becomes the expert in creating good listening environments and can be a dynamic resource to the preschool personnel. As that child moves into preschool, developing a mutually supportive relationship between the preschool staff and the parent is the goal of all parties involved with the child. The time spent communicating about the child and his needs brings yet another opportunity for the child to see or hear the parent advocate. It is another model.

Parents and teachers are very busy people, but finding ways to be involved in the life of the classroom supports the child immensely. A powerful way to support communication development across a child's environments is meeting together and sharing the list of songs, current themes and books that will be used in the classroom, as well as the week's lesson plan. This kind of communication and relationship-building could be accomplished through email updates, a traveling notebook, or class newsletters. Playing at home with some of the ideas that are introduced at school helps build the child's interaction skills and extends the play ideas. The child's self-confidence in their skills with play and the topics really can benefit interactions with their peers.

When interacting with the child's mainstream preschool, it is critical to have time to explain the child's listening devices to the preschool staff and the other children. This is a good time to involve the child. This can be a developmental opportunity for the child as they progress up to elementary school. Those end services can be done by the parent with the child or with the hearing specialist who serves the child. Children are naturally curious, and they are good at finding lost pieces to assistive listening devices in the classroom. Inform the children about the equipment at a very appropriate level and help them understand the basics of good communication as well.

During the preschool years, the child should be well on his way to developing an auditory personality. They have learned about their equipment at an age-appropriate level, and they have developed those early skills with their devices through a very gradual release of small responsibilities. The parent shoulders a bulk of the responsibilities. There is a significant amount of coordination that goes into keeping a child in technology that is working, as well as in speech and school services. The parent is often the link between specialists that may not see each other very often, as well as being the taxi driver. But there is a balance to strike between two.

The child is a child first, aside of the hearing impairment. Helping develop self-esteem and self-confidence means developing and strengthening other areas of the child's life as well. Parent-to-parent support groups can be helpful to bounce ideas off each other. Teacher-to-family supports are important to enhance communication across the classroom line. In my classroom, we use something called the Daily News. It is a language experience approach. We are using digital pictures that have been taken throughout the day. It keeps the family up to speed on the happenings in the classroom. Experience with books might be another tool to use in developing some of those self-advocacy skills if you are talking about the situations and the solutions that you have discovered.

The foundation for developing self-advocacy starts with the parent and is developed over time. A key component to auditory-verbal therapy is family coaching and that leads to the role release. From the beginning of services, families are coached in strategies to enhance the child's communication, listening, thinking skills, as well listening environment. It is also a place to help the child develop that inner discipline.

Coaching and Gradual Release of Responsibility

Marcia Zegar: This statement is nothing new, but it truly takes a village to raise a child. As a child with hearing loss advances from preschool to the elementary school setting that village increases in size, in the variety of listening environments, the number of communicative partners, and the number of school personnel who touch the life of that child. In order to continue the self-advocacy development foundation which is initiated in preschool, we now shift our focus to the application of coaching and gradual release of responsibility.

First, let's discuss who is involved. The key player, of course, is the student. It is critical that the specialist have knowledge about the student's chronological age versus listening age, the student's age of identification, history of consistency and quality of auditory access, the student's cognitive and language levels, along with social and emotional development.

Secondly, knowledge of family dynamics is also critical. Who lives in the home? What level of language and literacy support does the family provide? Are you cognizant and sensitive towards the family's cultural background? How involved is the family in the student's audiological management and educational success?

The third element is the school environment, which includes both a variety of general education staff and specialists. In order to provide optimal intervention through coaching, knowledge of experience levels and communication avenues between staff and varied school listening environments are all critical. This whole concept of instructional coaching was first introduced in the field of general education, but it is an effective method to integrate into best practice for students with hearing loss.

The effectiveness of coaching has been well documented. Some studies demonstrate that 80 percent of teachers who received instructions from follow-up coaching report implementing new strategies into their classrooms. Without this coaching piece, that number drops to 10 percent. This is critical research for us to remember when we are providing in-service training to staff. We must maintain the perspective that if our training stops, what we have done will not be effective. When working with students in the development of self-advocacy, talking about the topic alone will not provide the results hoped for.

As a specialist working with students with hearing loss, the concepts of coaching can be applied to both students and staff. In the realm of self-advocacy development, coaching provides a method of guiding the student and the teacher's understanding of the student's skills and needs, observing and acknowledging when assistance is needed, and advocating for those needs. Once the foundational pieces are in place after staff training, the role shifts from teaching new information to coaching successful application of the information. The goal is to ensure student listening and learning success in the classroom. Examples include classroom observations and interactions in which you, the specialist, observe the student and the staff within the learning environment noting what is and what is not working. The next step is to determine strategies to improve the learning and listening environment and advocate for the student.

Classroom demonstrations are critical. Teachers need a lot of support to feel comfortable with the use of the equipment and the listening requirements. They need examples, demonstrations, modeling, and coaching on how to change presentation styles, advocate in an effective manner, and demonstrate in-class listening checks. Debriefing can happen in person, by phone or by email. You, as the specialist, need to set up your system because communication is critical.

The concept of gradual release of responsibility in the educational setting may be familiar to some of you. Vygotsky's Zone of Proximal Development has been defined as the distance between the actual developmental level as determined by independent problem solving and a level of potential development as determined through problem solving under adult guidance or in collaboration with more capable peers (Vygotsky, 1978, p.86). This concept exemplifies itself in the instructional technique known as gradual release of responsibility. During the preschool years, the specialist is constantly observing the child's reaction and response and then modifying the input to foster growth and development. The goal of the specialist and the teacher is to maintain this fine balance of learning within that zone of proximal development.

This concept of gradual release is also known as the I do it, we do it, you do it model. Figure 1 identifies the roles and responsibilities of both the teacher and the students during each stage of learning. The same principles of direct instructions, guided interaction, independent practice, and collaborative learning are critical concepts in effective coaching to foster self-advocacy development in children with hearing loss.



Figure 1. Breakdown of mentoring roles and responsibilities; Taken from https://comped.salkeiz.k12.or.us/sll/elementary-docs/systematic-eld-resources/GradualReleaseResponsibilityJan08.pdf Click Here for Larger View of Figure 1 (PDF)

Coaching techniques using the parameters of gradual release are extremely effective when specialists are working with students, classroom teachers and other support personnel and parents. In order to be effective in fostering self-advocacy development in students, we must be critically aware of the student's development of theory of mind. Coaching can teach the concept of perspective taking, for example me thinking about you, you thinking about me. Coaching can help teach problem solving, concepts of time and space, and the development of social register, or knowing when it is appropriate to say certain things. For example, recess conversation with friends is different from talking to the classroom teacher. Although we cannot delve into this topic with much depth today, we highly recommend that you refer to Cochlear's HOPE Online seminars by Carol Flexer and Kimberly Peters for in-depth information regarding Theory of Mind and the challenges that face students who have hearing loss and the impact on self-advocacy development.

Many students with hearing loss require direct instruction, coaching, and implementation of gradual release of responsibility when learning to advocate for their listening and learning needs in the classroom setting. This would include helping the student understand classroom routines and the demands those routines place on their listening comprehension, understanding differences in teaching styles, and social registers that vary throughout the school day. Direct instruction followed by gradual release can be applied when helping students learn classmates' names, communication strategies, understanding teaching presentation styles, needed accommodations, and modifications for classroom success. Many of our students struggle with learning other classmates' names, but that is one of the first things they need to be able to do so that they can invite their friends to play. It is a social skill that is critical. Most schools have rosters with student pictures. Start with a few of those friends and make sure your students know what the names of their friends are. It will help in self-advocacy development.

The ancient Chinese proverb, "Tell me and I'll forget, show me and I may remember, involve me and I'll understand," is foundational in our use of coaching, gradual release and fostering the student's self-advocacy development.

Constituents and the Continuum

At the preschool level, the emphasis is on the family, but as the child advances in age the emphasis shifts from the family to the student and the school personnel, although the family will continue to be the most important component in the student's life and for self-advocacy development. Self-advocacy development must include direct instruction, coaching, and gradual release of responsibility in order for the student to understand the following three parameters: the operator, the equipment, and the listening environment.

The first constituent is the operator, or the student. The student must understand himself. He must understand his strengths and his needs. Equipment includes the student's hearing aids, cochlear implants, personal FM systems and any other assistive listening devices (ALDs). The listening environment is any listening situation the child may encounter on a daily basis.

Considerations for the operator or student include the child's chronological age, listening age, consistency of stimulation of the auditory brain, developmental and language levels, self-concept and confidence as an auditory learner, and proficiency in operating his or her own equipment. Equipment considerations include whether or not the hearing aid or cochlear implant is functioning appropriately, device capability and limitations for speech sound access, and any special features that the ALDs have.

The listening environment considerations are complex. It includes overall acknowledgement and understanding of the impact of acoustics on learning. It benefits all students with hearing loss or not. It is a critical factor that public schools are still struggling with. In regard to listening environments for our students, we need an overall understanding of the important aspects of observation, equipment availability and use. We need to understand language content, form and function used by the communication partners. We need to understand classroom dynamics, classroom acoustic support and the variability of listening environments throughout the school campus. Because of the challenges that school environments present with regard to physical acoustic properties and the impact on students' ability to achieve listening comprehension, these elements are worth emphasizing. It is critical that we understand classroom acoustics and the impact they have on our students and their listening success.

Let's spend a little more time talking about the continuum. The student, the equipment and the listening environment form the continuum of successful auditory access and comprehension in the school environment, and they represent the areas to be addressed in self-advocacy. The listening environment is a complex concept and includes both the physical acoustics along with the language content, form, and function used by the communication partners within that listening environment.

The Student: Gradual Release of Responsibility

Self-advocacy development requires a gradual release of responsibility starting in one area only. An analogy of teaching a teenager how to drive might help you understand these continuums. For example, you instructed, coached, and practiced gradual release of responsibility as your teenager learned to drive. First, the initial input to your teenager started from the first moment your child rode in the car with you. Over the years, from the car seat to the back seat your child listened to your commentaries about driving, your observations, your cautions, and possibly some cause and effect experiences from you, an experienced driver. I am quite sure that the first time your child sat behind the steering wheel you ensured that the car, or the equipment, was working properly, and you were very selective in controlling that environment. It was likely a very familiar location with few obstacles, such as empty parking lot.

If you have that image in your mind, I want you to take that same concept that you already know and apply that to a child with a hearing loss. If the child, the operator, is learning to listen through new or reprogrammed equipment you have to make sure that the equipment is working properly and that the environment is familiar and quiet. By changing only one element on the continuum and stabilizing the other two parameters initially, you are assisting that child's development of skills and self-advocacy. As a student's skills become more refined and sophisticated, you can move into changing and challenging the student with two parameters on the continuum. Remember, you are observing the student's response to determine the zone of proximal development, the perfect balance for learning acquisition and development.

If there is an equipment problem, such as personal FM system malfunction, you need to ensure the listening environment is familiar and quiet and that the operator has access to sound through his or her hearing aid or cochlear implant before coaching the student on troubleshooting the personal FM system equipment. If the listening environment has a challenging signal-to-noise ratio or language complexity, ensure that the equipment is working and that the operator is using the equipment optimally. This allows the student to focus advocating on listening-environment factors, making decisions on accommodations or modifications he needs to make himself, and what changes he may need to advocate in his environment for successful listening comprehension. Again, reflect on the I do it, we do it, you do it model of gradual release.

First, start at the instruction level. Through observations and student or teacher feedback, determine an environment in which communication breakdowns occur, such as competing background noise. The specialist should problem-solve verbally in peer commentary with picture support. Identify the problem, brainstorm solutions, discuss how to actively observe the listening environment and predict likely listening challenges. Identify communication demands in anticipated communication content. Role play the solutions, following role rehearsals with the student. Move into practice scenarios and rehearsal strategies with other students or adults familiar with the training for dealing with those challenges. One example to do this is by saying, "We are going to do a rehearsal. I can set them up to what is happening. I can stand in the background and watch the student's interaction, and we can troubleshoot, and I can coach." Following such types of practices and moving into real-time events in which a specialist can coach the student.

Using technology as a training tool, the specialist takes a more passive part in the interaction. Transition to the role of coach and commentator as the student views the interaction through media support. The use of coaching and gradual release are powerful tools in the student's development of self-advocacy.

Equipment and Listening Environment: Gradual Release of Responsibility

Some basic applications of the continuum concepts equipment and listening environment are as follows. First and foremost, always remember that the equipment must be operating well. This requires careful monitoring throughout the student's school day. Ensure a plan is in place for daily listening checks. This is not an optional activity. If you do not know that your student's equipment is working, you are possibly setting them up for a day of failure instead of a day of success. You need to coach the student in understanding his or her responsibilities in this daily listening check and what to do when listening problems arise.

A critical factor to remember is that in a classroom setting, the recommended signal-to-noise ratio for children with hearing loss is 15 to 20 dB (Cole & Flexer, 2007). In simpler terms, speech needs to be approximately ten times the level of background noise. This is critical when paired with the student's proper equipment functioning. The auditory message quality is of upmost importance both for the child's listening comprehension and also for the child's speech production. We would highly recommend readings by Carol Flexer listed in the Appendix for further information related to signal-to-noise ratio.

As a specialist, it is critical that you are knowledgeable about the impact of classroom acoustics on successful listening comprehension for your students with hearing loss. Coaching and the use of gradual release of responsibility are critical intervention techniques in the student's development of necessary skills to monitor and troubleshoot his or her device. The goal is independence. We do not want students to be dependent on us. We want them to take the lead. These same tools are also critical in providing the teacher and other school personnel the skills needed to support the student's listening and learning requirements.

Again, the use of coaching and gradual release of responsibility are excellent techniques for ensuring implementation of the identified accommodations and modifications specified on the student's individualized education plan (IEP). To foster self-advocacy skills gradual release of responsibility should be implemented with listening checks, operation and care of personal hearing aids or cochlear implants, use and troubleshooting a personal FM systems, and use and troubleshooting of classroom sound field systems. How is this possible? Through gradual release of responsibility starting with the awareness of the needs and responsibilities of self-advocacy development, education, direct instruction, demonstration and use through the I do it, we do it, you do it gradual model.

One strategy we have found very helpful at our center and also for students that transition from the center site back to their neighborhood school is the use of a student management tracking notebook. We have designed this to be something that is advantageous for our program. The components of the notebook include basic identification of school, contacts and equipment, as well as a daily listening check log, school calendar, academic log and student concerns, teacher log, specialist log, contacts for teachers and family, and specifications and manuals for the equipment. You may find that you want some other components for your program. We have found these particular aspects critical. The goal was to have easy access of information for those referencing the notebook, be it the student, the teacher, the specialist or the audiologist.

In the area of management, it is critical that the team members who are responsible for the stated management are listed in the notebook. There are so many things for which we are responsible to train personnel, and we need to know what equipment was needed, who the specialist is, and who attended the training so that we have a better awareness of where we are in the coaching process. This would include such things as daily listening checks, including FM-system checks.

Make sure you know who is responsible in your building. For some of our students who have transitioned back to their neighborhood school, this may be multiple people, and it may change on different days depending on who is available. Make sure those responsible parties are aware and also very comfortable with the process. That, of course, is going to require you proceed through that coaching process and gradual release.

Students need to be included on this list, too. It is very critical for a student's self-advocacy development that he or she understand their responsibility in this process. As the student advances through the elementary grades, a noted gradual release of responsibility should occur in the areas of daily listening checks, equipment use, and functional checks.

Direct Instruction

A specialist needs to coach the classroom teacher and other staff would on the following topics: classroom accommodations and modifications, how to perform a listening check, the rationale for using ALDs, personal FM system basics and troubleshooting, soundfield system basics and troubleshooting, hearing aid and implant basics and supplies, as well as troubleshooting personal devices. I am you will think of other areas you will need at your particular school, but this is a good start.

Classroom accommodations and modifications should be taught at the very beginning of the school year, where we can sit down with every classroom teacher and make sure they are comfortable with the IEP, what the service levels are and what the classroom expectations are. We guide and assist them in implementation. How do they perform a listening check? A listening check does not have to be performed only by a speech-language pathologist or a teacher of the deaf. This is a tool that other people can also learn to do, again, through the coaching process.

Classroom discussion regarding hearing loss and assistive listening devices is huge, not only for classroom teachers, but also for students. You want to include your student in this process because they are the ones that need to advocate for their listening needs. As far as supplies are concerned, does the teacher know where they are at in the classroom or the school? Who is responsible at the end of the day to make sure that the receiver boots are placed back in a safe location for the next day if the child does not have his own personal system that is going home?
Learn the troubleshooting basics for FM systems, both personal and soundfield system basics. Involve that student in utilizing technology for communication and education in the development of self-advocacy.

It is a great time to be in practice, because technology makes the creation of video clips easy. We use mini recorders such as Flip cameras, digital cameras, and cell phones to make how-to videos. This is an effective way to provide efficient and clear communications for students, educational staff, and parents. Students can then take the lead in identifying critical information to be communicated and choose which media can best support that endeavor. Some of our how-to examples include equipment functioning and use of FM systems and accessories. Most of us have our cell phone right there. It is an easy thing to pull that out and do a quick video clip of how to sync the FM with a hearing aid, for example. This is even something the student can do. This becomes a video that can be transported to families or teaching staff or on the troubleshooting guide on your Web site. Integrate this type of technology within student classroom projects and have that student take the responsibility as a technology specialist. Our students enjoy this. We do a lot of media work, and they are very proud of what they have learned.

Another example of a strategy to use in the school environment to promote self-advocacy development is a rainy-day games project. My students learn to play a variety of commercial games, and they can check out the games for rainy-day recess. It is really important to remember the continuum. You need to ensure that the language levels required by the game format and the listening environment will not be too challenging for the operator's success. You are going to need to provide ample role rehearsal, learning how to play the game. We do that first in a structured situation, and then we expand that by inviting other classmates into the therapy room where students can learn to interact and advocate for their listening needs with different communication partners. You are going to be anticipating the language needs through the rehearsal, learning how to play, learning language to anticipate, assessing communication breakdowns, and teaching how to advocate for listening needs. An even more critical component is teaching the student to make sure that he or she knows how to choose a good listening location in the classroom. That is a very important component that you need to discuss with your student so that they can advocate for their listening needs, especially when all the children are in the classroom, such as on a rainy day.

This is a good time to teach techniques such as, "How do you ask a friend to play?" These are all components of self-advocacy development. If you are interested in implementing something similar I would highly recommend Cochlear HOPE Speech Sounds. It is available online as a PDF and is an incredible resource. Amongst other things that are included in that PDF are game suggestions which are provided for each consonant phoneme.

We now are going to watch a short video clip of one of our students. Dakota is a bilateral cochlear implant user. In this clip Dakota is rehearsing a classroom presentation about himself. The point I want to emphasize with this clip is that self-advocacy starts with self-esteem and self-confidence. The student is not the hearing loss. The student is a unique individual. Help your student discover his or her talents and gifts. The student's hearing loss is only one small part of who he or she is.

Screenshot from video of bilateral cochlear implant user

[video]

Boy: "On the floor is your very own Dakota Palmer."

Dakota: "This represents me because I won this trophy on my very first BMX bicycle race. Also, the track was difficult with a lot of jumps. This ribbon shows how much I love to build Legos. I won first place at the Lego competition at the state fair. There was about 30 entries. I put this book into my speech because I love to read, and this is my favorite book, Captain Underpants. Captain Underpants is very funny. I like to spend some of my spare time playing video games. This is my favorite game, Tony Hawk: Pro Skater 3. I like it because it is very exciting with a lot of action. The final piece of my speech is a picture of me in my Blazer gear holding my basketball that was signed by Brandon Roy, number 7. I also love to play basketball and have been playing for the past three years. Go team."

[end video]

Marcia Zegar: So as you can see, Dakota is a great guy. This is an amazing family who is a good example of self-advocacy. From the start, they truly believed that their child was going to be absolutely efficient and capable as an auditory learner. It is so much fun to work with him. This student believes in himself. He has very strong self-esteem.

How-to video clips created by students on hearing aids, cochlear implants or assistive listening devices are excellent tools to use to foster self-advocacy through knowledge of equipment operation along with providing reference tools for students, parents and/or staff on equipment use.

Next we are going to watch a short video clip of another student, John, rehearsing a description of his hearing loss. We were developing a mini movie about him. Like Dakota, John is another remarkable young student. He was born in Vietnam, profoundly deaf. He was adopted as a preschooler by a wonderful family who chose to have him receive a cochlear implant, and later receive a second cochlear implant. After attending our deaf and hard-of-hearing preschool and elementary school, John made his transition to the neighborhood school as a fifth grader. The movie was one of many self-advocacy tools he took to his new school.

Screenshot from a video of a student rehearsing a description of his hearing loss

[video]

John: "Hi, my name is John, and I am in fourth grade at Salem Heights. And my favorite sport is snowboarding and motorcycle. I have a profound hearing loss. When I was 3-year-old I got my first cochlear implant. When I was 7-year-old I got my second cochlear implant. I wear a Freedom Cochlear Implant on my right ear and a Freedom Cochlear Implant on my left ear. I also have a personal FM system to wear in the classroom and my teacher wears a transmitter like a microphone."

[end video]

Marcia Zegar: John is an incredible guy, too, and he has worked so hard. It is quite remarkable to think that he did not receive his first cochlear implant until the age of three. We are going to move on now to troubleshooting books.

Another self-advocacy tool that we incorporate is the creation of troubleshooting books. When students are transitioning from our center site to their neighborhood school, a major concern is equipment failure and how to remedy the situation efficiently when trained specialists may not be in the building. One thing we are most nervous about as these kids transition from our center site to the neighborhood school is the technology. We have to make sure kids can hear, and the technology is the biggest part of that. One thing that we have done is taken photos of steps that the students can independently complete. Students know if something happens, "These are the steps I can take independently before I even need to talk to my teacher." We want to make sure they have those skills. Included in this would be physical inspection of the device, identifying specific component labels, how to check the battery, how to check device if components are seated properly, how to reboot a device, how to sync with the personal FM systems and what to do if the device fails, and what steps can be taken to maintain auditory access if the ALD is not working properly.

Figure 2 shows some examples of the photos in Brogan's troubleshooting book. In these pictures he is demonstrating how to sync his hearing aids with his personal FM system. A written description accompanies each picture describing each step. In this scenario the sync was achieved and working well so you see the thumbs up.



Figure 2. Example of student using pictures to illustrate FM system troubleshooting.

In the troubleshooting guide, providing a photo reference of the student's own personal equipment with accompanying labels is critical (Figure 3). Students can accurately communicate to the specialist in the management notebook when they have problems with their equipment. This strengthens the student's confidence in self-advocacy. You do not want the student to say, "It is just not working." Where exactly is the problem, and what steps have been taken to troubleshoot the problem? If the student can identify a specific component, you are partway down the road. A part of self-advocacy development is ensuring that students understand their equipment and refer to the parts appropriately. Remember, you must model this, do it together, and then turn it over to the student. Again, it is a gradual-release process.



Figure 3. Example of labeled parts of a sound processor in the troubleshooting guide.

Figure 4 is an example from Nicholas's book. He is a bilateral cochlear implant user who has been transitioned back to his neighborhood school. He is demonstrating attempting to sync his left cochlear implant to his personal FM system, but it did not work. So Nicholas is then demonstrating what the next step in his troubleshooting process would be. Again, all pictures have a written description of the process being demonstrated. We have found the use of audio/video technology integration, application of the concepts of coaching, gradual release of responsibility, implementation of student management notebooks, creation of troubleshooting books, and efforts to promote consistent and dependable communications with fellow staff, students, and families are all critical. It is a continual process requiring persistence for all involved in the village raising the child with hearing loss.



Figure 4. Example from child's troubleshooting book on syncing an FM system with a cochlear implant.

Summary

Ann Baumann: In closing, we would like to mention that there are a number of excellent resources available online. Please refer to Appendix A for a list that Marcia and I refer to frequently. We also hope you will take time to learn from the Cochlear HOPE Online e-seminar discussing the components and applications of the PARC, the Placement and Readiness Checklist, for students who are deaf or hard-of-hearing. Additionally, The Alexander Graham Bell Association has a wonderful site developed specifically on the topic of self-advocacy. For those of you who are speech-language pathologists the Web site also has multiple articles and resources on self-advocacy development.

Marcia Zegar: We have introduced general concepts of self-advocacy and special considerations in the development of self-advocacy in children with hearing loss. We have discussed general concepts of coaching and gradual release, building the foundation from the elementary years, the multi parameters, the constituents and the continuum, strategies and examples, and resources.

Ann Baumann: That ancient Chinese proverb, "Tell me and I'll forget, show me and I may remember, but involve me and I'll understand," is critical when thinking about self-advocacy development. We always appreciate hearing from our fellow professionals because your experiences and tools-of-the-trade are invaluable to us. We have an opportunity to learn from each other, and in this process we can provide more effective services to the students we serve. Thank you for this opportunity to share with you today.

Question & Answer

How young can a child be to start using these strategies? Can it start in kindergarten?

Ann Bauman:
I think it starts right away within the family. The auditory-verbal therapy is also used to coach families and help them take on more responsibilities and skills. Then, those kinds of skills are transferred to the child. It is a constant building process as a child develops more self-awareness and more skills. It becomes a family effort to help those children become more confident and capable at advocating for themselves.

Marcia Zegar: I agree. It is also different for different cultures. We have had to invest a lot of time helping some families understand how to do that self-talk. Not all cultures are as verbal as others, so the idea of demonstrating self-talk is a large part of beginning the self-advocacy journey.

Ann Baumann: We have had a couple of people chime in with some resources from Virginia Department of Education Project called I am Determined. That is www.imdetermined.org. This is a fabulous site with tons of resources on this topic for all children.

Have you had any seminars on self-advocacy and transitions for high-school students?

Marcia Zegar:
Although we do have experience with this age group, we have not yet created a seminar on that topic. We recognize that it something needed because as that student advances in age, the whole communication parameter and significance of verbal interaction becomes so critical for that student's self-esteem.

Donna Sorkin: There are some very nice HOPE seminars online that address the legal mechanisms that are available for students as they leave high school and either enter the work force or go on to college. There is a HOPE Online seminar that I did that covers the Americans with Disabilities Act as well as the Telecommunications Act and the Hearing Aid Compatibility (HAC) Act on telephones. There are also seminars that were done by Terry Zwolan and her team at the University of Michigan.

What is your typical caseload of students with hearing loss that are in the mainstream school system?

Marcia Zegar:
Thank you for this question. I realized that we had not really described what our center site looks like. We have preschool all the way through fifth grade. This year we have somewhere between 45 and 50 students who are deaf and hard of hearing. We do have a self-contained preschool program. Once our students enter the elementary setting, the majority of them are placed in mainstream classrooms. We do have two self-contained educational resource center classrooms for deaf and hard-of-hearing students, but students do not stay only in that self-contained classroom, either. They are constantly integrated in and out of both the mainstream and also the resource center for deaf and hard of hearing.

References

Cole E.B., & Flexer, C. (2007). Children with hearing loss: Developing listening and talking, birth to six. San Diego: Plural Publishing, p. 121.

Vygotsky, L. S. (1978). Mind in society: The development of higher psychological processes. (M. Cole, V. John-Steiner, S. Scribner, & E. Souberman, Eds.). Cambridge, Massachusetts: Harvard University Press.

Appendix A

HOPE Online recorded seminars. "Serving Children at School" module includes courses on preparing students to be successful in their learning environments, acoustics, back to school with cochlear implants and more. www.CochlearAmericas.com/HOPE

AG Bell, Building Your Child's Self-Advocacy Skills, www.agbell.org

CO Hands and Voices, Resource Guide, www.cohandsandvoices.org

ANSI/ASA, American National Standard on Acoustical Performance Criteria, 2010. Downloadable free copy of the standard available at: asastore.aip.org

Classroom acoustics materials, https://successforkidswithhearingloss.com/

www.carolflexer.com/links.php

 

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