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As I’m typing this blog entry, I’m chilling out in my bed and listening to a song from my iPod.
One of the biggest questions I receive as a cochlear implant user is how do I listen to my iPod. I just use the regular white earbuds that comes with the iPod. I place the headphones between my processors, right by the microphone, and my earlobes. Normally, I always set my processors on tele-coil, and the music sounds phenomenal!
While I just use the regular white earbuds, there are other different ways to listen to music with cochlear implants.
Music Link T- Coil: I have a set of these headphones and tried them. The quality of sounds are phenomenal. The only disadvantage is that I always have to use the t-coil and do not have the option of choosing not to use the t-coil.
Bose’s Noise Cancelling Headphones: I have a pair of these headphones. They are great for moments when I cannot use the tele-coil such as on some planes where I can hear feedback while the tele-coil is on. These headphones block out all of the background noise. The only disadvantage is that they are heavy and take up space in carry-on bags or purses.
Part C of the Individuals with Disabilities Education Act (IDEA) stipulates that states must provide Early Intervention programs for children with disabilities/delays birth to age three and their families. Once a child qualifies (criteria vary from state to state, usually, the presence of a significant hearing loss is enough to qualify a child for Part C EI services), the services he and his family receive are governed by an Individualized Family Service Plan (IFSP). One aspect of Part C is the idea that services should be delivered in the “natural environment” of the child. Usually, this means that therapists come to the child’s home, but it may also mean daycare, a relative’s house, or another community setting — whatever is “natural” for the child and the family.
With Universal Newborn Hearing Screening in the United States, children with hearing loss are being identified younger and younger, sometimes within a day of their birth. For many families, Part C Early Intervention services are their introduction to the world of having a child with hearing loss. Often, early interventionists serve a key role in introducing parents to hearing loss, helping them cope with identification and treatment issues, and encouraging healthy bonding with their baby. If all goes well, a family’s first introduction to special education services may very well be a rosy picture of caring therapists showing up on the family’s doorstep to guide and coach parents to teach their children to listen and talk.
This all changes at age three. From ages 3-21, the child falls under Part B of IDEA — the world of school programs, Individualized Education Plans (IEPs), and preparation for transition to post-secondary education and/or work. Being thrust from a comfortable home environment to the world of “big kid school” need not be a scary process, though. EI professionals should begin transition planning with parents months before the child’s third birthday (different states have different regulations as to when transition planning should begin) and, with proper information and support, turning three should mark an exciting milestone in your child’s progress to communication, education, and independence.
Here are a few links to free online “workbooks” for parents regarding the transition process. While some include state-specific information, many of the activities, checklists, and informative articles included in the booklets apply to parents throughout the US.
When I’m Three, Where Will I Be?Illinois-specific information, but excellent, parent-friendly graphics and articles that would be helpful to parents from any state. Highly recommend.
Bridge to Preschool: Navigating a Successful Transition Colorado-specific information, also targeted specifically for transition of students with hearing loss. Great chart starting on pg. 6 comparing Part C to Part B services.
Early Intervention TransitionNew Jersey-specific information. Starting on pg. 9, booklet has a great child profile for parents to complete to give the evaluation team a big-picture view of the child’s preferences, strengths, weaknesses, skills, abilities, and needs.
Transition to Preschool California-specific. Discusses how parents can evaluate whether or not a program is “developmentally appropriate” (and what that term means) starting on pg. 9.
What are some pitfalls to avoid during Transition? Here are a few off of the top of my head, but I’m sure parents and professionals reading this site will have many more to add — please comment and add your own advice.
More is not always better. It’s tempting to want your child to have every possible service, every professional consult, every bell and whistle and gadget and gizmo out there, but remember, if your end goal is that your child will function independently in a listening and speaking world, that starts now, even at age three. Encourage independence whenever possible. Give your child a chance to be stretched and to try something new. If you over-help, you’ll never know the child’s true capabilities. (Conversely, know the difference between pushing your child to grow and setting him up to fail — aim for the “just right challenge”)
“That’s all we have, so that’s what you’ll get” is not a valid offer. If “all we have” is not free and appropriate for your child, it’s not acceptable. The IEP team meeting is supposed to be just that — a TEAM meeting. As a parent, you are an important member of that team and have a right to have your opinions taken into account (Conversely, don’t be adversarial or argumentative. Be calm and assertive, not annoying. Most school personnel mean well, even if it doesn’t seem like it at times. Build positive, collaborative relationships and don’t burn any bridges — you might be dealing with this district for years to come, so start out on the right foot!)
Remember that your goals determine the services needed, not the other way around. Think big-picture about what you want your child to be able to do, and work from there to determine what steps you need to take to get there.
As always, parents and caregivers should consult with their child’s own EI team on the most current, state-specific Transition guidelines.
“If you always wait for the next price cut or to buy the new improved model, you’ll never buy any technology product because there is always something better and less expensive on the horizon.
The good news is that if you buy products from companies that support them well, like Apple tries to do, you will receive years of useful and satisfying service from them even as newer models are introduced.”
- Steve Jobs, Open Letter to iPhone Customers
This wonderful quote does not only apply to Apple customers, but also to all customers who purchase technologies including cochlear implants. Often times, people with hearing loss state that they would like to wait until hair cell regeneration becomes an option or a fully-implantable device is available in the market or a cochlear implant with more than 16-24 electrodes is created.
It is always best to take advantage of the best available technology today rather than waiting. If we wait, we’ll continue to struggle daily in terms of communications and isolation. Moreover, today’s cochlear implants are already so powerful and phenomenal, people can hear well depending on how well they do in rehabilitation, their quality of MAP, and their history of hearing loss. Plus, all three cochlear implant companies strive to continue to improve their patients’ hearing by creating processor upgrades without the need for additional surgery. It’s best to enjoy the technology today and enjoy life rather than continuing to wait and experience lower quality of life.
These articles are reposted from the reports I did for the AG Bell Convention 2010’s Official Blog. I am reposting them here for readers who did not see them “live” during the Convention and so that they will be preserved on this site for future CIO readers. Enjoy!
Auditory Neuropathy and Cochlear Implants: Theory and Treatment
Caroline Arendt, CCC-A; University of Michigan Cochlear Implant Program
Kelly Star, M.A., CCC-SLP; University of Michigan Cochlear Implant Program
Auditory Neuropathy, also called Auditory Dys-Synchrony or Auditory Neuropathy Spectrum Disorder, is a pattern of hearing loss that presents with normal Outer Hair Cell function and abnormal neural conduction (based on electrophysiological evidence like Oto-Acoustic Emissions, or OAE, testing). People with AN may have behavioral and speech detection thresholds anywhere from the normal to profound hearing loss range, and these levels can fluctuate over time. While pure tone hearing and speech detection may be less severe, the characteristics of poor low-frequency hearing and poor temporal processing of speech common to AN cause these individuals to have great difficulty with speech perception tasks. While the mechanism(s) that causes Auditory Neuropathy is not fully understood, scientists have suggested three possible sites of lesion – dysfunction of inner hair cells, synapse (connection) problems between inner hair cells and spiral ganglion nuclei, and problems with the axon of the acoustic nerve. Problems of AN could be related to one, two, or all three of these factors. In fact, the presenters hypothesized that what we currently call the “Auditory Neuropathy Spectrum” is really an umbrella term for a group of separate, specific disorders that we may someday be able to more clearly identify and treat differentially.
Risk factors for AN include:
Genetics: a non-syndromic mutation of the gene that leads to a decrease in otoferelin production crucial for hearing. In these cases, when this mutation (called DFNB9) can be identified, a cochlear implant is highly recommended, as spontaneous recovery and/or success with hearing aids is unlikely
Anatomical: problems with the cochlear nerve, also associated with narrow internal auditory canals. In these cases, a CI is also indicated, but with reservations for progress as would be expected in any patient with cochlear abnormalities
Neuropathic conditions: such as neurological conditions that affect not only the ear, but the whole person
Immaturity: low birth weight, immature auditory system, central nervous system immaturity
Idiopathic: unknown causes
When diagnosing AN, it is important to note that many patients with this condition have present OAE responses, and that a complete battery of OAE, ABR, and other testing is needed to confirm an AN diagnosis. Just because a baby passed a newborn hearing screen conducted through OAE testing alone (some hospitals do this and do not perform ABRs on all children) does not mean that Auditory Neuropathy is not present in that child.
While there have been some reported cases of spontaneous recovery from the symptoms of Auditory Neuropathy, there is no published research indicating the prevalence of this phenomenon. Instead, scientists suggest that, in cases of “recovery”, the condition should not be considered “cured”, but instead “transient” and should be monitored by professionals. Additionally, the long-term effects of “transient” AN are unknown – just because a child “recovers” doesn’t mean that there are not long-lasting effects from their first few months/years of auditory neural deprivation.
The presenters recommended obtaining ear-specific threshold information before fitting hearing aids on a person with AN, as their hearing thresholds often change and relying solely on ABR information may lead to an inappropriate fit. Remember that AN is more of a temporal processing problem than a hearing problem, so amplification with hearing aids may improve sound audibility, it does not make up for problems processing the temporal (timing) aspects of sound. An FM system is also recommended in these cases. For some children and adults with Auditory Neuropathy, however, hearing aids and FM systems are not enough. Regardless of the individual’s unaided hearing thresholds, if they are receiving therapy and still not making progress in speech understanding and auditory language development, they should be considered as a candidate for a CI. Of the thirty-one children with Auditory Neuropathy who have received cochlear implants through the University of Michigan’s program, the children had pre-operative hearing losses ranging from mild to profound Their post-CI progress has been commensurate with the progress expected from children with typical sensorineural hearing loss without AN, and many of these children and their families are pursuing bilateral implants.
The presenters closed by sharing what they have learned in their continuing effort to establish a standard of care for children with Auditory Neuropathy:
Early referral is essential
Therapy can help determine if progress can be made with spoken language with the child’s current hearing level/amplification
Cochlear implants may improve neural synchrony, resulting in improved speech recognition
Protocol includes examining the child’s case history for AN or risk factors for AN
Monitoring hearing, speech, and language closely is essential
Children may have better speech perception for shorter words (less timing interference)
Children with AN generally have poor speech intelligibility due to the unclear speech signal they hear (remember, you say what you hear!)
Though there is much to be discovered about this disorder, and a standard of care has yet to be established, the team at the University of Michigan has reported very promising results with cochlear implantation in their population of pediatric patients with Auditory Neuropathy.
AVT Model for Families Transitioning from Visual Language
Sarah Wainscott, Ph.D., CCC-A, LSLS Cert. AVEd; Chattering Children
While many families’ first choice for their children with hearing loss is a listening and spoken language approach, other families may come to Auditory-Verbal therapy later, after using signed languages, manually coded English systems, or Cued Speech with their children. Other culturally Deaf families may have a home language of ASL, but desire listening and spoken language for their children as well. This presentation aimed to give attendees strategies for understanding these families and providing them the appropriate guidance and coaching within a listening and spoken language framework.
When families who have used visual languages come to Auditory-Verbal Therapy, professionals must use their LSLS principles to coach and guide the family. Though families who sign may not be the traditional candidates for AVT, goals may include improving early intervention access and efficacy, impacting a broader continuum of children, including those who sign, and increasing language and academic outcomes for school-age children. Therapists and familes need to discuss what the family believes about Auditory-Verbal Therapy and communication in general. What are the family’s priorities? What are they already doing at home that is working? What are their challenges and how can we, the professionals, help?
Ms. Wainscott divided these “transitioning children” into four groups, each with distinct needs, and suggested tips and techniques to provide high-quality services to each group.
“Infants Exposed to Sign” (families that have instituted baby signs at home)
These families may be aggressively pursuing AVT and CIs
Their children are young, they are still exploring service types and learning about their child
They view AVT as critical and wish to capitalize on their child’s critical period for language development
Parent education should focus on the process of listening and language development
Therapists should gather information on how signs are used at home (is the family really signing or is it more gestural? Does the child imitate signs or use them independently?)
Cultivate positive professional relationships with sign-based programs
Identify opportunities for language and listening at home and in the community
GOAL: For the parent to receive all information and come to the best decision possible for their family
“Signers in Transition” (children who have been educated using manual communication whose parents wish them to transition to an oral language approach)
Priority is building proficiency in spoken language
Often underserved populations: late identified, late recipients of HAs/CIs, limited service options, families not proficient in English
Trying to make up for lost time
Oral language is the target – goal levels vary by age
Families view AVT as potentially hopeful, but may be unsure about their child’s success based on their age
Families are learning about language development and making compromises
Parent education focuses on developmental processes
Gather information on how sign is used in communication and play (What is the parents’ skill level? What is the child’s skill level?)
Work on functional skills first, then build cognitive and academic language
Collaborate with the child’s current school placement
Identify opportunities for full and accurate modeling at home, school, and community (especially if family is not native English speakers)
Famlies must commit to consistent use of optimal technology and intense exposure to spoken language
Counsel parents on realistic, optimistic progress goals
Early success is critical for motivation (for both parents and child)
Outcomes vary based upon: age at transition, family commitment, availablily of language experiences, child’s language learning capacity
“Special Needs Signers” (children with hearing loss and multiple disabilities”
Priority is access to both receptive and expressive communication
Families are pursing AVT and hearing technology, but also dealing with multiple other medical needs
Consider the child’s visual, motor, and cognitive skills
Spoken language is optimal, but the child’s receptive and expressive modes may differ (child may be able to hear and comprehend, but anatomically cannot produce speech, and must respond in sign)
View AVT as the family’s primary tool for spoken language, though they may have many other tools in their box (sign, picture communication systems, assistive technology devices for communication, etc.)
Slower pace of development and AVT progression
Gain information on pre- and para-linguistic communication in the home (Does the child make eye contact? Does the child show joint attention skills?)
The primary target is making the child available to listen and coaching the parent to identify auditory-based behaviors that ARE present in the child (blinking or turning to noise, motor imitation of vocal patterns, etc.)
Collaborate with the child’s other providers
Identify language and listening opportunities at home and in the community
“Culturally Deaf” (children of Deaf adults who use ASL as their primary mode of communication and identify with Deaf Culture)
Primary decision factors for parents choosing AVT/CI are: better educational options, more access to broader society
Usually later age of implantation
School choice is still a challenge (families often tied to state residential signing Deaf schools)
ASL is still highly valued
Families view intense oral training as temporary, and parents may have their own negative attitudes based on their own experiences with traditional speech therapy
Families who choose this route may have varying experiences/reactions from the Deaf community
Deaf community has mixed perceptions of AVT (myths and facts)
Challenges include: parents with not only a different language (ASL) but a different language modality (manual vs. oral)
Practictioners must value the integrity of both languages receptively and expressively
Therapists must identify the parameters of the therapy session and language use (for example, “I will sign the parent education portions to Mom, but in therapy, I will only speak to the child and expect her to listen and respond orally)
Appropriate expectations for outcomes are crucial
GOAL: Inform and empower parents. Build rapport and relationship with parents in their native ASL, let them know that they are valued members of the AVT team. Modify parent participation tasks common to AVT (can the parents perform a Ling sound check using an iPod rather than by voice?). Give more deliberate parent education and coaching and give specific feedback on the child’s speech (for parents who may not be able to hear and evaluate their child’s voice quality). Help parents navigate the hearing world of new school systems, educational placements, and cultural/language barriers.
GOAL: Give children frequent and deliberate language exposure to a continuum of rich language experiences. These children may have reduced opportunities to pick up spoke English through incidental language. Help parents identify language models (hearing family members, community story-reading events at local libraries, community mainstream preschool programs, or, for older children, computer software designed for English language learners) to give them the spoken English exposure they may miss.
GOAL: Complement the child’s existing educational program while still focusing on moving toward increasingly oral, increasingly inclusive placements. Incorporate your AVT therapy plan with the academic skills the child is learning in school. Make academic language a priority. Assist parents in the IEP process and communicate with, and visit, possible school placements for the child.
As professionals in Listening and Spoken Language, we possess knowledge and skills in the area of auditory development and spoken communication. When families come to us, regardless of their background or previous communication experiences, we can provide them with the best possible services for listening, language, and academic success, if that is what the family so desires.
The Auditory-Verbal Lives of Children with Multiple Challenges
For children with hearing loss in conjunction with multiple other, sometimes severe, disabiling conditions, what are the benefits of cochlear implantation and the Auditory-Verbal approach? Dr. Ritter andher team conducted a series of interviews that mixed qualitative and quantitative research to determine the factors parents considered most important when choosing CIs/AVT for their children with multiple challenges.
While much research on cochlear implants and listening and spoken language has focused on children who achieve high levels of speech intelligibility and open-set speech recognition, Dr. Ritter quoted McConkey-Robbins (2008) in arguing that, “We need to count as legitimate constructs that parents identify as making a differences, because these form the basis for hope.” So, what do parents count as legitimate? In this study, benefit #1 was “Child Affect” – parents reported that their children were happier following their cochlear implants. Parents also valued “connectedness,” receptive communication,” and improvements in relationships within their “family systems.” Surprisingly, despite the multiple medical issues and obstacles that these children and their families face, complaints about “challenges” ranked dead last in the data culled from parent interviews in this study.
Parents were interviewed on seven domains of CI/AVT benefit. While parents reported many factors that influenced their opinions of their child’s progress in each category, the parent quotes shared during this presentation spoken volumes beyond what could ever be captured by the data.
Child Affect
Reduction in self-stimulating behavior
Less effort for the child to participate in family/community interactions
Better quality attention
Child is happier overall
“He seems to be immensely happy to be socially involved in other lives. It was too hard to get him to focus, and hold focus (before the implant). Sound has definitely changed this.”
Connectedness/ Inclusion
Others interact with the child more because they know the child can hear
Child is more able to tolerate new experiences
Child’s ability to interact with others is enhanced
Child is more present, more engaged
The child has a broader social sphere and is not restricted to only those who know sign language
Child is more connected to family and peers
“At church, people will talk to her and she will smile. It takes less specialized effort to engage her, so a wider circle of people can do it successfully. She’s more present, more engaged – she’s no longer alone in the room.”
“She will turn to look at me when I make one of her favorite sounds. It is the only time she orients toward me. When she looks at me, even if it is really only to see the sound, she looks into my face and into my eyes, and I get a chance to love her with my eyes. I use her ears, to get to hear eyes, to get to her heart.”
Receptive Communication
Child turns to name
Child continues to progress in auditory comprehension (even reported progress in one subject with multiple disabilities who was over fourteen years old)
Child responds with appropriate actions to familiar songs
Child follows some routine verbal directions
Child demonstrates some open-set auditory comprehension (though many parents reported that this was inconsistent)
“I said ‘yogurt’ in conversation with my son, and happened to glance across the kitchen at my daughter and she was signing yogurt! She definitely got some, too!”
Family Systems
Family feels more “normal” to parent (Dr. Ritter shared how funny it is that parents are unafraid to use these words that professionals feel are so loaded.)
Less effort for parents and siblings to include child in family interactions
CI technology was easier for parents to manage than hearing aids
Child’s ability to interact through sounds brings the parents joy
Family has more fun with the child
Parents now feel that they have done everything possible to support the child’s optimal function
“You used to have to work so hard just to get him to look at you. Now it is effortless on our part, he’s on his own steam.”
Listening (non-linguistic)
Child responds to voices from another room
Child loves and appreciates music
Child laughs at funny sounds
Child reliability communicates when CI signal is bad or off
Child searches for environmental or voiced sound
Child removing CI headpiece is a good indicator the child’s engagement
Child independently replaces headpiece
“I am happy to see that he can at least hear his environment … and is able to dance when music comes on. I think that is what matters most, because the CI brought music into my boy’s life that was not there before.”
Expressive Communication
Child makes non-verbal efforts to engage others
Child’s vocal volume moderated to a socially acceptable level
Increase in amount and variety of vocalizations post-CI
Child uses inflection with meaning
Child imitates vocal patterns/melody
Child imitates consonant-vowel combinations
Expressive communication for these children is reported to be inconsistent
“He knows for sure that his voice has power. He has differentiated tone of voice for a long time. But now it seems more deliberate. It’s easier now to tell what his mood is from another room.”
Challenges
Child removes headpiece to get attention or to protest
Child can’t wear CI when doing some favorite things (such as roughhousing or trampoline play)
“At first she wanted nothing to do with sound and quickly learned to take it (the CI) off. We got a hat for her and my mom attached straps (helmet style) and we tied it under her chin.”
These articles are reposted from the reports I did for the AG Bell Convention 2010’s Official Blog. I am reposting them here for readers who did not see them “live” during the Convention and so that they will be preserved on this site for future CIO readers. Enjoy!
Research Symposium: Re-Modeling the Deafened Cochlear for Auditory Sensation: Advances and Obstacles
Moderator: Carol Flexer, Ph.D., CCC-A, LSLS Cert. AVT
Andy Groves, Ph.D.; Associate Professor in the Department of Neurosciences, Department of Molecular and Human Genetics and Program in Developmental Biology at the Baylor College of Medicine in Houston, Texas
Jian Zuo, Ph.D.; Member/Professor of the Department of Developmental Neurobiology at St. Jude Children’s Research Hospital in Memphis, Tennessee
Stefan Heller, M.S., Ph.D.; Professor and Director of Research in the Departments of Otolaryngology – Head and Neck Surgery and Molecular and Cellular Physiology at Stanford University School of Medicine in Stanford, California
One of the greatest parts about the biennial AG Bell Conventions is the fact that the Convention offers something for everyone — from the children’s and teens’ programs, to sessions for adults with hearing loss, to parent panels, to professional development workshops, even scientific symposia on the latest research — anyone connected to hearing loss in any way can find something edifying and worthwhile at the Convention. This morning’s Research Symposium focused on explaining the latest research in a very hot topic — hair cell regeneration. The scientists shared their theories, research, and directions for future investigation, as well as answered questions from the audience.
Since around the 1980s, scientists have known that animals, such as jellyfish, worms, mollusks, and birds have the capacity to regenerate damaged hair cells, and even to do so multiple times, restoring hearing to approximately 95-97% of the animals’ original capacity. Mammals, especially humans, seem to have lost this ability. These researchers shared their current work in mice, focusing on regenerating the “support cells” that provide nourishment to the crucial cochlear hair cells used for hearing. Now, they have induced proliferation of support cells en vivo (live, in the mouse, not in a culture or petri dish), and have evidence that these support cell nuclei migrate up and start to divide close to the epithelium, as seen in non-mammals that are able to regenerate hair cells. However, these support cells have not shown the ability to trans-differentiate from support cells to hair cells.
Interestingly, there is no reported evidence that tumors have ever occurred in the human Organ of Corti (the “hearing organ” in the cochlea). This is great news for the health of the Organ, but what it also means is the cell division in this area is highly regulated. For researchers, then, it means that getting the cells to “turn on” and start growing and dividing will be an even more difficult task. Eventually, the dream is to be able to regulate the cell growth cycle, to turn it on “high” when we need cells to regrow and “low” when we have the cells we need to prevent overgrowth and tumors, but for now, that’s an area of distant speculation. Perhaps one day, this could be regulated by drugs made of growth regulating molecules that could be delivered to patients en vivo.
Some of the challenges of this research is that the neonatal mice models being used are not, in fact, equal in cochlear development to human neonates (newborn babies). Instead, their cochleas most closely resemble those of a child not yet born, in approximately the third trimester of the mother’s pregnancy. By the time a baby is born, their cochleas are similar to those of about a two-week-old mouse which, in “mouse years,” is fairly well grown. To translate these advances to success in humans, therefore, we must be able to first perform the regeneration in adult mice cochleas, research that is not yet performed. In addition, there are significant differences between a healthy adult cochlea and a deafened adult cochlea. This regeneration requires nerve innervation, and intact cochlear and Organ of Corti support structures, which may not be present in adults, especially those with long-term duration of deafness. Humans have both inner and outer hair cells, but those that have been seen to be regenerated in lower animals are not differentiated. As such, scientists do not know which type, or either, or both, will grow in humans when this technology is available for our species. Inner and Outer Hair Cells, while similar, have differentiated developmental paths, further complicating the system. In the mice used in these research studies, the animals are born with functioning, developed cochleas and the hair cells are then destroyed — will the findings in this study only apply to humans whose hearingn has been damaged with ototoxic drugs? What about people with genetic hearing loss, or hearing loss due to abnormalities in anatomy? While these challenges don’t mean that the regeneration will never be possible, they do add many more factors that researchers must take into account.
Worry, Worry, Too Much Worry? Identifying and Managing Parent Anxiety
Parent Panalists
Janice Gatty, Ed. M., M.Ed., Ed.D.; Clarke School for the Deaf
Jennifer Rosner, Ph.D., Clarke School for the Deaf
In this parent panel, mothers and fathers of children with hearing loss shared there experience answering the following questions about their family’s hearing journey: What worried you the most? What helped ease your worries? What is your greatest joy? What helped to foster joy? What can professionals do to help you as a parent and family? Their answers, which were given with such poise and honesty, touched everyone in the room, which was packed beyond capacity with people sitting on the floor, lining the walls, even sitting on the side tables. Their answers gave insight into families’ perspectives on the journey of raising a child with hearing loss who listens and speaks, and provided not only comfort to other parents, but also valuable information for the professionals who serve them. Below is a sampling of the parents’ responses.
What worried you the most?
Relationships with family members — how will the child communicate, especially with extended family, if they all have to learn sign language?
My child will live in a quiet world, missing out on the joy of music and the sounds of life
I’ve never met or been around people with hearing loss, I don’t know what to do or expect
Will my child be able to drive?
How will my child do in school? Where will they go to school?
Will my child have friends?
How can I travel the long distances needed to receive services?
Our whole world is being turned upside down… where are we going from there?
Children having additional disabilities, and the stress that adds
How are we going to be able to put together the resources that are needed for our daughter to succeed?
The worry is always there, but it drives me to find the answers
What helped ease your worries?
A network of friends
Networking with other parents of children with hearing loss
Faith
Worrying — if it motivates you to more ahead
Making a list and crossing things off
Reading, learning, and researching
Internet sites, listservs
Love
Little joys and victories everyday, though there are also tremendous challenges
This strengthens our marriage and family — it was really amazing the power this thing had to bring us all together
What is your greatest joy?
Right now [during the presentation] he’s playing his video game and not even listening to me, he’s rolling his eyes!
Every stride that he made was amplified
When we saw the first signs of language — he’s getting it!
Seeing your kids going to other children’s birthday parties
Seeing your child become a star athlete
My child had a speaking role in the school play
Hearing my deaf child sing
Finally taking a step back, taking a breath, and saying, “It’s working!”
Knowing you are making progress toward your goals
Still being a mom, still having fun with my children
Learning to appreciate differences and individuality
What helped to foster joy?
Having breakfast and dinner together — family rituals
Conventions like AG Bell that bring you to people you need to support you — suddenly you don’t feel so alone
More experienced parents speaking about their children’s success
Meeting teenagers with hearing loss and thinking, “Someday, we’ll get there!”
Gratitude fosters happiness
What can professionals do to help you as a parent and family?
Show love to the child
Connect parents to other parents
Repeat information and give reminders — parents may be too emotional to take it in the first time, and even parents with multiple children with hearing loss like to hear things again
Allow, remind, and encourage parents to bring spouses or friends to appointments to make sure there is someone to watch the other children, take down information, provide emotional support
For parents, once you find a good professional, don’t let her/him go!
I liked professionals who made me never feel challenged or demoralized to ask them any kind of question
Support parents so that they feel they’re not working on goals alone
Give parents skills, language, vocabulary, and scripts to explain hearing loss, educaiton, and technology to friends, other caregivers, and extended family
Use social networking and contact via email
Realize that everyone is opinionated
Provoke parents, make them think, look at different angles, spur parents to do their own research
The professionals we stuck with were ones who took our challenges and went along with us to research different perspectives
The parents in this panel were from throughout the United States and one father was from Brazil. Despite the differences in family size, child’s age, nationality, language, culture, and services, their comments had so much in common about the often un-chosen, but frequently rewarding and enriching, journey of raising a child with a hearing loss to listen and talk.
Technology to Promote Language and Aural Development
Shea Denham, M.S.Ed., LSLS Cert. AVEd.; Echo Center — Echo Horizon School
Jessica Aguillon, M.S.Ed.; Echo Center — Echo Horizon School
Jennifer Mascolo; Echo Center — Echo Horizon School
The benefits of using technology to teach language and listening skill development include multi-modal learning, ease of work sharing, and, most importantly, it’s highly motivating and fun for children!
The presenters gave attendees dozens of suggestions for how to use technology. Here are just a few…
Digital Camera
Take pictures to create your own classroom alphabet boarder — the more obscure the words, the better! Children know A is for Apple, but do they know A is also for accordion, ambulance, asparagus, and attic?
Take pictures to make a color book. Add sentences to describe where you found each color (The red crayon is in the box) to practice prepositions and other language skills needed to make a sentence
Take pictures of classmates, faculty, and staff around the school in the first few days of the academic year to help children learn names and vocabulary for the various positions of the adults in their program. Send the book home to facilitate conversations between children and their parents and caregivers.
Have children act out idioms (ex: a picture of a very mad child for “…makes my blood boil…”)
Find examples of shapes or geometric concepts (parallel, vertical, etc.) and take pictures to make a book
Take vocabulary pictures for review
Make a language experience book
iMovie (or other digital video programs)
Have children re-create their own versions of popular children’s literature (for example, one child made a book entitled “If You Give a Pig a Pop-Tart”)
Have children make a film following a thematic unit to show what they’ve learned
Have children write, illustrate, and produce their own stories (writing for an audience is far more motivating than writing for a grade… even if they’re going to get a grade either way!)
Digital Voice Recording (can be done on iPods, other MP3 players, or digital recorders)
Practice for public speaking and presentations
Record class lectures for later review and note taking
Record reactions during class trips for later use in experience books or videos
Record spelling lists for independent studying — give children control over, and responsibility for, their own learning
Record a set of directions and have children follow them using auditory-only listening to a degraded (digital, not live voice — it’s more challenging!) signal (ex: record “How to Make a Paper Airplane” and have children make their own following the directions)
Record lengthy passages of information and test for comprehension
Listen to music recordings with and without lyrics — highly motivating for children
These recordings can serve as a great record of the child’s speech and language over time!
Video Conferencing/Skype
Students use iChat, Skype, or other videoconferencing programs to speak to each other from room to room in the school, or across the world
Teachers/therapists can change the visual settings (use sepia tone or face swirl technology) to obscure the face to take the focus away from speechreading and on to auditory-only comprehension, if so desired
Children can practice conversational repair skills (“I’m sorry, I couldn’t hear you, could you say that again please?”) and pragmatics, like greeting, introducing a topic, closing a conversation, etc.
Audiobooks
Allows children to read books above their current reading level (children can listen to material that may be a little too difficult for them to read and comprehend by themselves)
Expsoure to new vocabulary
Can be purchased on iTunes, downloaded for free from www.audible.com, purchased from a bookstore, or checked out from a local public library
Some audiobooks’ speed can be adjusted faster or slower for students who may need a little more processing time
Lit2Go, a free program from the University of South Florida, has downloadable audio-visual stories for children, too
Podcasting
Students can create their own podcasts for class presentations
Students can make podcasts to be lead their own inservices for the staff when they transition to the mainstream
What is the benefit of using technology? Other than the fact that it is increasingly a part of children’s lives and highly motivating for them, it also increases their self-monitoring skills, helps them listen to and correct their own grammar and articulation (auditory feedback loop), and is good practice for conversational and oral reading fluency (rate, volume, clarity).
Bridging the Distance: Outreach Therapy Services
Lynda Close, Ba.Sp.Th., LSLS Cert. AVT; Hear and Say Centre
“Telemedicine is breaking down the tyranny of distance” for familes located far from Auditory-Verbal Therapy services. Located in Brisbane, Australia, the Hear and Say Centre serves children over an area larger than the entire state of Texas. In 1998, they began distance therapy with one child via mail and telephone, in 2000, and moved to Video Teleconferencing, introduced webcam (Skype) in 2005. Today, the Centre serves twenty-seven children across Australia and three foreign countries.
Families in the program use Skype webcam conferencing, or, if the family does not have a computer or internet access, can travel to a local school, hospital, or health center that has agreed to allow the family to use their videoconferencing equipment. The families receive 45-60 minutes of direct AVT via webcam every other week, and parents and therapists speak via phone to discuss lessons, goals, and concerns in the “off” weeks between therapy. Parents are given detailed lesson plans and follow-up activities, and therapists are always accessible to parents via email.
To counter the unpredictability of working only with the toys and games the family may have on-hand at home, the Centre also makes use of “Lesson Boxes”. The boxes, which are centered around various themes (construction, dinosaurs, zoo, etc.) contain toys, games, books, and manipulatives, and are mailed to families each month. The themed boxes give therapists and parents a common base of resources from which to plan lessons and activities, and provide continuity for children.
To increase face-to-face communication between therapists and the families they serve, each therapist visits her outreach families twice during each year in their home. Families also receive one visit per year from a Senior Manager from the Centre. During these visits, professionals are able to not only work face-to-face with the family in their natural environment, but also to meet and collaborate with local service providers and determine progress and revise IEP goals. During this time, therapists will also visit the child’s educational setting and provide consultation and support. In return, families in the outreach program visit the center in Brisbane twice a year, too. The Centre provides transportation funding and lodging for the families, who stay for two to three days for therapy, audiological appointments, and assessment. One of these visits is planned around the Centre’s Outreach Camp, a gathering of families from all corners of the country and the globe, who participate in individual therapy, small group parent-child sessions, playgroups, parent education sessions, assessments, audiological appointments, and social gatherings. For families from rural areas, the Outreach Camp may be the first time they have ever met other families raising children with hearing loss.
Ms. Close suggested that therapists consider the following issues when planning outreach lessons:
Child Issues
The child should be seated with a good view of the webcam
Activities should be age-appropriate and engaging (younger children prefer toys and objects over picture or paper/craft activities)
Have a copy of the items that the family will be using in front of you (the therapist) during the lesson
Have parents place the items to be used for the lesson in bags or boxes to limit distraction
Make the lesson fun and engaging while meeting the goals of the activity
Keep the lessons short and fun, and try to end on a good note
Plan for the activities being too difficult or too easy — what’s your back-up plan?
Parent Issues
Parents need to understand the goal and activities for the lesson (when therapists collaborate with parents and let the parents drive the goals and planning, they are far more engaged)
Preparation is important
Phone calls prior to the lesson are ideal
Handover of leading therapy to the parents is much sooner than in face-to-face AVT sessions
Parents have to control the activity, keep the child’s interest, model responses, and manage behavior — this is difficult
The parent should have back-up toys or activities that the child is sure to like on hand just in case the lesson starts to backfire
Therapists must provide lots of positive and constructive feedback
Therapists must provide follow-up activities and suggestions for parents
Therapists must review the child’s progress and future goals (Parents must report progress or goals achieved in the time between therapy sessions)
Ms. Close discussed some of the challenges of distance therapy, including the high cost and need for lots of funding and support and the extra time required for planning outreach therapy sessions. With varying video quality, it is sometimes hard to for therapists to model techniques or to accurately hear and correct the child’s speech. Despite the challenges, however, families report that bridging the geographical distance brings them services that would otherwise been nearly a day’s worth of travel away from their hometowns. For families, it is a convenient, comfortable, and comprehensive program that provides them with the resources they need to help their children learn to listen and talk, no matter where in the world they live.
Starting Out Right: Preschool Social Skills
Jacqueline DeGroat, M.S.Ed., Psy.D.; Auditory/Oral School of New York/ StriVright
Pnina Bravmann, Au.D., CCC/SLP-A, TSHH, SAS, LSLS Cert. AVT; Auditory/Oral School of New York/ StriVright
Social-emotional development begins in infancy, as children learn to alert to their environment, engage in nonverbal interactions, coo, and engage in babbling exchanges with caregivers. All of these important skills develop even before preschool! But for children with hearing loss, they may miss the social nuances that children with typical hearing pick up naturally. When children are missing these key social skills, parents and professionals may observe behaviors like frustration, distress, aggression, difficulty engaging other children in conversations, or difficulty initiating play. These poor social behaviors are later correlated with low self-esteem, negative attitudes toward school, and low academic achievement.
The Auditory/Oral School of New York/StriVright has implemented a social skills program for their students, which meets for one half-hour in each classroom every other week, with the lessons being carried over each day by classroom teachers and aides. The school psychologist, Dr. DeGroat, put together her own materials from various sources rather than using a published curriculum. She suggested using people, not animals, to teach these skills, as they easier for students to relate to their own lives and generalize to their everyday experiences. In this presentation, the professionals from AOSNY shared tips for teaching children in the areas of emotional awareness, conversational skills, friendship and play, and music therapy.
Emotional Awareness starts with building the child’s “emotional vocabulary” — giving them the skills to identify, name, and recognize feelings, the ability to understand and respond to others’ feelings, and the confidence to express their own. Professionals and parents can print pictures from the Internet or cut them out from magazines to show people expressing various emotions. Talk about the pictures, and have the children sort them by what feeling is being shown. From that basic ability to name feelings, teach children to think about feelings by making a story about the picture or act out an emotion for others to guess in a game of “Feelings Charades.”
Conversational Skills include the mechanics and positioning of conversation (i.e. personal space, eye contact, etc.), greetings, how to join in without interrupting, and how to stay on topics for an appropriate amount of time. For many children with hearing loss who spend lots of time in therapy with adults, they may be more skilled at talking with grown-ups than engaging with children their own age. One suggestion given to help these children was staging a “Talk Show” where the “guest” child answers questions about a certain topic (foods, toys, etc.) to practice staying on topic and thinking of all the different things that could be discussed (What is your favorite food? What food don’t you like? What did you eat for lunch? etc.). This is also a chance to practice important conversational repair skills, such as asking for clarification, repetition, or rephrasing.
To build Friendship and Play Skills, the presenters suggested working with children on how to join play, share, and take turns, among other things. They suggested modeling sharing play-doh and cookie cutter toys by first having two adults model sharing, and then giving half of the class play-doh and the other half the cutting toys, and suggesting that they problem solve on their own to find a way to play together with the materials. Another suggestion was the use of board games to practice turn-taking skills. Dr. DeGroat and Ms. Bravmann also suggested talking to children about the concept of “What is a friend?” and having children write each other letters about what they like to do together as friends. Activities like cooperative drawing, where each child draws part of the picture and then they present it to the class as a group, can help to foster problem-solving and teamwork skills. In their social skills lessons, students also practice negotiation skills. Adults ask questions such as, “What would you if someone bothers you? How would you stand up for yourself?” and then are assisted in brainstorming several possible solutions, such as walk away, say, “No!”, or go get an adult for help.
While the main purpose of the school’s Music Therapy program is to target skills such as pitch, rhythm, and intonation, the presenters have found it to be a great venue for carry-over of social skills as well. Even very small babies can play a drum together, or older students can each contribute their own part to a collective song. Singing songs with motions and dances can be an opportunity to learn how to ask classmates to be your partner for an activity.
To conclude, the presenters shared several tips of what they’ve learned over the years since implementing their formal social skills program:
Know your audience — langauge level, attention level, preferences
Consult with the classroom teacher on any issues that have arisen in class that need to be addressed
Structured groups are good for presenting new skills and for assessing skills, but we also need to capitalize on “teachable moments” for social skills throughout the day
Preschoolers learn best by doing — they are capable of role-play
Children need confidence and need to experience themselves having success with these skills
Consider the best location (classroom, lunch table, outside, etc.) and group size (partners, small group, whole class) for your activities
Enthusiasm will take you really, really far — you communicate to children that this is fun!
By spending time on these activities, we communicate to children that feelings are important
The presenters shared that, as important as social interaction is for the children, it is equally crucial for their parents. Located in New York City, the school brings together a virtual “United Nations” of parents who, despite their linguistic, cultural, economic, and other differences, gain support from each other. As one mother shared, “I never prayed for my child to get a one hundred on a test, I prayed for her to be happy and have friends — and now she has more friends than I ever had!”
These articles are reposted from the reports I did for the AG Bell Convention 2010’s Official Blog. I am reposting them here for readers who did not see them “live” during the Convention and so that they will be preserved on this site for future CIO readers. Enjoy!
Essential Practices for Listening, Language, and Literacy
Lyn Robertson, Ph.D.; Denison University
Denise Wray, Ph.D., CCC-SLP, LSLS-Cert. AVT; University of Akron
Carol Flexer, Ph.D., CCC-A, LSLS Cert. AVT; University of Akron
According to the AG Bell Academy for Listening and Spoken Language, Domain 9 of the Listening and Spoken Language Specialist’s competencies is “Emergent Literacy”. The focus of this domain is on the auditory and language skills that underlie and support the acquisition and advancement of literacy. Listening and Spoken Language Specialists don’t teach children how to read, we create the infrastructure (auditory brain development, language/vocabulary, reading aloud, and practice) and environment for reading. Pronouncing the words is necessary, but not sufficient, for being a proficient reader. Some children, however, seem to get “stuck” at only the most basic reading levels, with problems due to lack of knowledge of complex sentence structures, vocabulary and conceptual knowledge, story structures and informational structures, cause and effect, main idea, chronological orders, enumeration and categorization, and/or strategic memory.
What can parents and professionals do to help?
Talk constantly with the child
Create experiences and talk about them
Use complex language, explain it, and link it to the experiences
Read aloud on a DAILY basis — use books that are slightly beyond the child’s present level to stretch their linguistic abilities
Use synonyms and antonyms and point them out (builds comparing and contrasting skills)
Show curiosity — ask questions and show the child how to find answers
Play word and board games
Sing, dance, and play instruments (“The brain loves music!”)
Organize information (and show the child how to do it, too!)
Reading aloud to children is essential. The presenters shared the Emilie Buchwald quote, “Children are made readers on the laps of their parents,” and reminded us that laptops don’t have laps — we must unplug and engage with our children in shared reading activities each and every day. Lifetime readers become lifetime achievers, and when we initially teach children to want to read and focus less on how to read, they develop literacy skills that are not only age-appropriate, but self-motivated as well.
Challenging Children: Tips and Tricks for Success
Betsy Moog Brooks, M.S., C.E.D., LSLS Cert. AVEd.; The Moog Center for Deaf Education
How can professionals and parents have success with children who are challening? Well, first we must define “success” and “challenging”. For the purposes of this presentation, Ms. Brooks defined success in spoken language as intelligible enough speech for people to understand, good enough understanding to converse, and good enough language to read. Children with challenges might include those with difficult to manage/disruptive behavior, additional complicating factors (additional disabilities), and children with deficiencies in one or more academic area.
What strategies can parents or teachers use to ensure that these children have the best possible chance for success with listening and spoken language? Ms. Brooks suggested:
Establish a routine (use picture schedules, write the order of activities on the board, provide information prior to transition times)
Don’t argue or engage with a disruptive child
Have clear and specific rules/consequences
Have clear expectations
Involve the child when possible
Be consistent
Recognize age-appropriate behavior (are you as the parent or professional expecting a two-year-old to act like a mini adult?), have realistic expectations, and tolearte behavior that is age-appropriate
Ms. Brooks also discussed the specific challenge of working with children with hearing loss and additional disabilities. She emphasized that, as professionals who have chosen to work in this field, we have an ethical obligation to help every child in our care. Even if the methods we’ve used successfully for the first 700 students in our program don’t work for student #701, that is our responsibility as adults to adapt the program, not the child’s fault for not fitting our mold. Instead, Ms. Brooks suggested:
Familiarize yourself with the child’s issues (talk to the parents, call a doctor, look on the Internet, etc.)
Educate yourself about other impacting conditions
Take responsibility for learning to manage the situation
In terms of classroom or therapy session management (for all children, but especially those who are “challenging”), here is just a small sample of some of the tips and techniques discussed:
Expect the child to listen and talk — create the expectation that the child will participate verbally (even if they are in the pre-word stage, just taking turns with cooing or babbling is still an important skill of vocal turn-taking) instead of turning the session into a teacher/therapist/parent-dominated monologue
In group settings, teach a small number of children with similar language levels at the same time to better target areas of weakness (especially important in older children who have lots of catch-up to do)
Provide language appropriate activities and check for mastery of simpler concepts before moving on to those that are more complex (if you’re going to the zoo, teach dog and cat before hippopotamus!)
Check frequently for comprehension — don’t let the child get though by “faking it”
Emphasize vocabulary development — give them the words upon which language and conversation and reading are built
Ms. Brooks emphasized that even very young children are acutely aware of their own strengths and weaknesses. Can you imagine going to school and having your weakest areas emphasized for six hours a day? Children know when they are not doing well. Especially for children with a lot of challenges, teachers teachers, therapists, and parents must find areas of strength and work from there to give children a much needed feeling of success. Provide lots of positive reinforcement — not necessarily candy or stickers, but a smile or a “Good job!” to let children know how proud you are of their hard work.
What factors affect learning and progress in talking? Ms. Brooks highlighted three:
Access to Sound (how well the device is programmed, how well the child perceives speech)
Teaching Factors
Child Factors
To determine which one (or more) of these issues is at play, analyze the difficulty and act! Waiting is not an option — children may learn at different rates, but they all must learn. There is a small window for the best time to learn language, and children must have ways to communicate with the world around them.
If access to sound is a problem, we need to raise our expectations. With today’s technology, we should expect high-level auditory access and speech perception. Benchmarks include expecting evidence of hearing in the first 6 months post-cochlear implant, and vowel discrimination in the first year with a CI. If this is not happening, communicate with the parent and audiologist. The child may need a MAP change or hearing aid reprogramming. Professionals must be in touch with audiologists who perform speech perception testing so we are aware of what the child can perceive through his/her device and be aware of changes.
If the problem is teaching, we as professionals must be unafraid to take a good hard look at ourselves and make the changes necessary to serve all children to the best of our abilities. Perhaps we are being too global and not providing enough structure and detail in our lessons. Perhaps we are not focusing enough on expressive language. Perhaps we are simply not providing enough opportunities for children to practice talking — how can you become good at anything if you don’t have ample opportunity for practice? The teacher’s language level may be too high or too low (not at that “just right challenge” level) or teaching may not capitalize on the child’s areas of strength while targeting their areas of weakness.
If the child has behavior issues, cognitive deficits, language learning problems, attention problems, speech production problems, poor short-term memory, or a combination of the above, we must determine how much input the child can manage at one time and adjust our teaching to deliver information in manageable “chunks”. Children need lots of repetition, but this repetition must be meaningful, not rote — talking about the same concept again and again in slightly different ways is very different than drilling it over and over without any context. Teach to the child’s attention level and structure the task for success.
In summary, Ms. Brooks said, we must believe that children with hearing loss CAN be successful, and that teachers need to take responsibility for student learning. Students may present with several factors, but by assessing their problems and providing strategies, we can create an environment conducive to learning. Don’t be afraid to try new teaching strategies. Most importantly, raise expectations — for yourself as the parent or professional, and for the child. Above all… believe in the child!
Parent Advocacy Training Super Session
Bruce Goldstein, J.D.
Inez K. Janger
Bill Corwin, J.D.
Ann Godmere
This two-hour “Super Session” aimed to give parents an understanding of federal special education law, the negotiation skills necessary to develop and manage Individualized Education Plans (IEPs) and Individualized Family Service Plans (IFSPs), and to learn how and where to access up-to-date information on special education law with the aim of securing a Free and Appropriate Public Educatoin (FAPE) for all students with hearing loss, as required by law. Soon, this excellent advocacy program will be available on the AG Bell Website.
Teacher/Therapist Share
Teachers and therapists from programs around the country — public and private, school-based, center-based, and home-based, came together to show off their tips and techniques to their colleagues. Some activities included:
Mary Browning from the Moog Center for Deaf Education shared how she uses celebrations (some typical, like Hundredth Day of School Day, and some novel, like Take a Bird to School Day) to keep children’s interest high while teaching important new vocabulary and language concepts through celebrations and fun
The Training and Advocacy Group (TAG) teaches important social, self-advocacy, and community service skills through a social group for tweens and teens with hearing loss.
The organization Partners for a Greater Voice shared information and pictures from their trips to help establish listening and spoken language programs and auditory access in the Dominican Republic
Professionals from the John Tracy Clinic shared their Chatterbox handouts that are full of parent tips in both English and Spanish
Teachers from the Listen and Talk program shared their Daily Pictures program where they print and send home photo pages with explanatory text about the day’s activities for children in their preschool program
These are just a few of the many great presenters who came from diverse programs across the country to share their best practices in a spirit of cooperation. Though the presenters came from different organizations, all had the same goal of providing high wuality listening and spoken language services for children with hearing loss, and through this event, they were able to learn and grow from each others’ experiences.
These articles are reposted from the reports I did for the AG Bell Convention 2010’s Official Blog. I am reposting them here for readers who did not see them “live” during the Convention and so that they will be preserved on this site for future CIO readers. Enjoy!
A Longitudinal Study of Auditory-Verbal Effectiveness
Dimity Dornan, A.M., Ba.Sp.Th., F.S.P.A.A., LSLS Cert. AVT; Hear and Say Centre
Carol Flexer, Ph.D., CCC/A, LSLS Cert. AVT; University of Akron
Ethically and legally, the family’s desired outcome for their child guides us as professionals working with children with hearing loss. If the family chooses a listening and spoken language option, what data do we have to support this as a scientifically valid choice for families? Thanks to Dimity Dornan, Carol Flexer, and other scientists like them, we have more and more every day. This presentation summarized the results of a 4 year, 2 month longitudinal study conducted by Dimity Dornan and her colleagues focused on documenting the success of Auditory-Verbal intervention for children with hearing loss.
To begin, Dr. Flexer emphasized to the crowd that listening is not at all about the EARS… it’s all about the BRAIN. Auditory-Verbal Therapy, “[I]sn’t about tickling the ears, it’s about growing the brain.” Think about this: the human body is beautifully designed to give us just the right amount of sensory input. We have lids on our eyes, because we’re not meant to always see. Do we have lids on our ears? No. Auditory input, for children with typical hearing, is a 24/7 sensory experience. For children with hearing loss, then, if our goal is to capitalize on the auditory brain centers, we must advocate for early detection, identification, amplification, and stimulation if we are to build their listening brain. As an audiologist, Dr. Flexer also pointed out the unique audiologic management needed by the pediatric population, especially young infants. “Babies aren’t just short little eighty year olds,” she said, and thus we cannot treat them as such in our audiologic management – they need more frequent earmold impressions, more specific hearing aid adjustments, more vigilant speech perception testing if they are to have the best possible shot at developing listening and speaking skill on par with their hearing peers. Technology and opportunities for children with hearing loss today are far greater than in previous decades, but according to Dr. Flexer, if a clear auditory signal isn’t making it to the brain (via hearing aids, FM systems, Bahas, cochlear implants, or other technologies or combinations thereof), “You might as well be talking to the floor.” Auditory access is step one. With improved hearing capabilities, Dr. Flexer noted, “The days of in-your-face talking are over.” We can now expect children with hearing loss to gain the skills to hear in noise, follow multi-talker conversations, hear across distances, and even pick up incidental language (especially crucial for learning social skills and Theory of Mind). In conclusion, as anyone who has heard Dr. Flexer present before will know, “It’s all about the brain!”
Once children have achieved access to a clear sound signal, what evidence do we have to support Auditory-Verbal Therapy practices? Ms. Dornan compared nineteen children with a mean pure-tone average of 79.39dB (severe hearing loss) with nineteen language-age matched hearing peers over a period of fifty months (4 years, 2 months). In her study, the children’s receptive and expressive language, speech production, reading and math skills, and self-esteem were assessed at various intervals during the fifty month time period and the results were astounding. In language progress, receptive vocabulary, speech progress, reading skills, and math skills (yes… that’s ALL of the areas tested), there was no significant difference between the hearing and AVT groups of children. What’s more, the children in the AVT group had a mean age of identification of 23.5 months and mean age of cochlear implantation of 27.7 months (this was before Universal Newborn Hearing Screening in Australia) – ages that are on the older end for what we expect from today’s children, many of whom are identified at birth. The language and academic achievements of the children with hearing loss in the study were impressive, but what was most heartening was the measure of self-esteem. In this area, children with hearing loss scored equally to their hearing peers.
Though we use the same word – “deaf” to describe these children as we did for children with hearing loss decades ago, perhaps the time has come to change our mentality… and our vocabulary. The results of this study show that, over time, children enrolled in Auditory-Verbal Therapy programs are achieving stellar speech, language, academic, and social results on par with their hearing peers. Though much research remains to be done in this area (replicating the study in different AVT centers, different countries, etc.), the expectation of 12 months progress (or more) in 12 months time, and commensurate achievements for children with hearing loss and their hearing peers, is no longer a dream. Dr. Flexer and Ms. Dornan offered several explanations for why this is so: early auditory brain access, simultaneous education of the parents and child in Auditory-Verbal Therapy, and auditory brain growth through intense (but fun!) practice.
It’s a Small World After All
Lilian Flores, Ph.D., LSLS Cert. AVT
Teresa Caraway, Ph.D., CCC-SLP, LSLS Cert. AVT
Kathy Sussman, M.S.
Lic. Elisa Giraudo
Lic. Florencia Cornejo
The presenters for this session hailed from two US states, Mexico, and Argentina. All were brought together by their mutual commitment to provide superior listening and language services for children with hearing loss and their families. The presenters shared how collaboration, across countries and across languages, has been a mutually enriching experience for all of their programs. In today’s global society, the issues facing programs in Spanish-speaking countries are quickly becoming realities for programs in the United States, many of which have students whose parents come from around the globe and speak a variety of different languages. The presenters shared the results of a parent survey they conducted to highlight some of the main concerns facing these families: lack of interpreters for audiological appointments, concerns about teaching their children two oral languages, and problems with culture clashes (or misunderstandings) between parents and providers. The professionals emphasized the importance of conducting similar “family profile” surveys in our own practice, finding out the family dynamics and composition, parental education levels, perspectives and outlooks, daily social and play routines, traditions, and educational hopes for their child, as well as rhythms, songs, games, and first words from the family’s native language. In so doing, professionals can build cultural understanding while making the family, who may be intimidated by interacting with professionals in a language with which they are not wholly comfortable, feel like a respected member of the child’s educational team.
Some ideas and immediate proposals of the presenters included:
Take a family survey and analyze and apply the outcomes
Understand the cultural and social differences between the therapist’s culture and families’ cultures
Be empathetic – raising a child with hearing loss is difficult… raising a child with hearing loss outside your country, alone, and not understanding the language is even more difficult
Understand how the situation affects the family from a global perspective – not just the child-parent interactions, but interactions between parents, other siblings, extended family members, etc.
Confront your own stereotypes, biases, and assumptions that may get in the way of providing quality therapy
Help the family transfer language and speech production tasks into the activities of their daily life and in their own way
The presenters also discussed the idea that collaboration between professionals from the US and from Spanish speaking countries could indirectly benefit children of Spanish-speaking parents identified with hearing loss living in the USA. By learning from our colleagues in Central and South America, United States professionals can receive educational materials on hearing loss written in Spanish, and by supporting the professional development of Listening and Spoken Language Specialists in Spanish-speaking countries, we add to our collective knowledge base to serve Spanish-speaking children and their families, wherever they might reside.
With their successful collaboration as a model, the professionals from the US, Mexico, and Argentina encouraged other organizations to do the same, building mutually enriching relationships with listening and spoken language programs across the globe. As one presenter noted, “We may be different, but in terms of our commitment to the children and their families, we are all very much the same.”
Sound Beginnings: Coaching Families with LENA Feedback
Helen Morrison, Ph.D., CCC-A, LSLS Cert. AVT; Texas Christian University
Lisa Lopez, M.A., LSLS Cert. AVT; Sunshine Cottage School for Deaf Children
Adrienne Russell, M.Ed., LSLS Cert. AVEd; Sunshine Cottage School for Deaf Children
Donna Kramer. M.Ed.; Sunshine Cottage School for Deaf Children
Julie Sill, M.Ed.; Sunshine Cottage School for Deaf Children
The LENA, is a device smaller than a pack of cards, worn by a child for a period of time, that picks up audio recordings of the child’s environment and, when connected to a computer, can yield an incredible amount of information about the user’s auditory environment. Based on the research of Hart and Risley (1995), the more words a child hears before the age of three are highly correlated with language and academic outcomes later in life. Children from impoverished families entered school with a gap of 30 million words when compared to their peers who were children of professionals. The situation becomes all the more dire when we consider a child with hearing loss. How can professionals help parents, regardless of their socioeconomic level, optimize their meaningful language interactions with their child? These presenters sought to provide a solution to thei problem using the LENA system. The LENA’s Digital Language Processor collects information such as:
This information can be used to guide and coach parents, and to empower parents to set their own goals for increasing their interactions with their child. When they analyzed LENA data from a test cohort of children, the presenters found that parent-child conversational turns were correlated with child vocalization. They found that parents engaged more with children who were more vocal – how can we coach parents of less-vocal children to talk, talk, talk to get their child to that high-vocal rate when a one-sided conversation is often frustrating and not very rewarding? The researchers shared several case studies to illustrate how LENA data can be used in parent coaching sessions to allow parents to take control of their interactions with their child and set their own communication goals. When goal-setting comes from the parent, follow-through is much more likely. Though this system is new, the presenters suggested a variety of uses for the LENA system, both for research and clinical practice.
These articles are reposted from the reports I did for the AG Bell Convention 2010’s Official Blog. I am reposting them here for readers who did not see them “live” during the Convention and so that they will be preserved on this site for future CIO readers. Enjoy!
Adults Aren’t Just Big Babies: Guiding and Coaching Families in the Listening and Spoken Language Journey
Teresa H. Caraway Ph.D., CCC-SLP, LSLS Cert. AVT
Dr. Caraway is a Listening and Spoken Language Specialist at Hearts for Hearing, a program in Oklahoma City, OK. Hearts for Hearing provides audiological, educational, and therapy services to clients from around Oklahoma and the surrounding states. The center has fit hearing aids on a baby only nine days old, while in another room activating the cochlear implant of a ninety-three year old patient. They serve eighty-eight children birth to three and their families through Early Intervention programs, and see another 103 clients for Auditory-Verbal Therapy each week.
Dr. Caraway noted that, “It’s easy to miss what you’re not looking for,” and, as professionals who work with young children, we are often so focused on the child and on our therapy goals (our agenda), that we often overlook the resource we have right in the room – the parent! Babies, after all, come with adults in tow, and as professionals providing services to the family, we must include all members in our treatment plans.
Lorge (1947) described adult learners in terms of their “wants”:
The want to gain something (“I want to gain the skills necessary to help my child”)
The want to be something (“I want to be the best parent to my child”)
The want to do something (“I want to do whatever it takes to help my child learn to listen and talk”)
The want to save something (“I want to save the hopes and dreams I had for my child, with or without hearing loss”)
When we really listen to what parents want, we are better able to meet their needs. That’s the “what”… but what is the “how”? How can we meet those needs? Dr. Caraway suggested that one way to make ourselves more effective at guiding and coaching parents was to understand adult learning styles. Adults may come to therapy sessions for their children thinking, “WIIFM? What’s In It For Me?” They prefer learning that is self-directed, draws upon their rich set of experiences, relates to learning needs presented by real-life events (my child is deaf – what do I have to learn about this?), and want to learn skills that can be immediately and practically applied to their circumstances.
The acronym LEARN is a helpful way to remember five basic principles of adult learning:
Leadership – let adults take the lead in determining what and how they learn
Experience – has two meanings. First, adults have a lifetime of experiences upon which to build and relate new skills. Second, adults, like children, learn best by experience.
Appeal – how can we make the information appealing to the learner? How can the therapist tailor her presentation to best fit the parent’s preferred learning style?
Respect – we must view the parents as our partners. They have valuable things to add to the session even though they may not be professionals.
Novel Styles – adults learn in different ways.
So, if adults learn in novel ways, how do we determine the learning styles of the adults who walk through our clinic or classroom door? Consider… a convection oven. If you moved into a new house that had a convection oven, and you had never used one before, how would you learn how to use it? Would you jump right in, push a few buttons, and be okay with making a few mistakes? Then you’re a Dynamic Learner who learns by jumping in and doing. Would you call a friend or talk to someone who has the same kind of oven? Then you’re an Imaginative Learner who learns by networking and conversation. Would you read the manual cover to cover before beginning to bake? Then you’re an Analytic Learner who prefers handouts and lots of information before becoming actively involved. Would you skim the manual for the main pointers before starting to bake? Then you’re a Common Sense learner who wants the basics and then gets started. The same things apply to parents in an Auditory-Verbal session. Having a better understanding of how your children’s parents learn and how that fits with your own learning style (or doesn’t – and how you have to adapt your therapy style) can help you become a more effective therapist.
Another complicating factor in adult learning is the influence of various generational learning styles – parents (or grandparents) from the Baby Boom Generation (1946-1964) learn differently than Generation X parents (mid 1960s-1981) who learn differently than Generation Y parents (1981-2001), also called “Millennials.” The majority of the parents of young children we see today fall into the last category – the Millennial Generation. Dr. Caraway presented the “Top 10 Tips for Working with Millenials:
Use technology (Do you text for appointment times? Is your website accessible and appealing? Do you use video taping to self-critique your therapy sessions? Is your organization on Facebook?)
Make it fun – this is the generation raised on “edu-tainment” like Sesame Street
Talk is essential – Millennials love to communicate!
Present the big picture – let them know where we go from here
Be fair and smart – it’s okay not to have all the answers, but you should be honest and know where to look for the information
Provide lots of feedback
Be organized
Provide lots of structure in the learning setting – unlike previous generations, Millennials are used to lives full of scheduled extracurricular activities, unstructured time was not a part of their childhood as it was for previous generations
Encourage development of learning communities
10. Develop opportunities for experiential learning
One interesting point Dr. Caraway made was that, because of technology like teletherapy, we are entering a “4th Generation” of early intervention. The “where” is no longer as important as the “how” – that is, while home-based services were a great achievement of the last generation of EI providers, what is more important today is not where the therapy takes place, but how it is conducted (with high-quality therapists armed with technology and the latest research-supported practices).
Dr. Caraway showed this video about the impact of technology on society and encouraged us to consider capitalizing on the Millennial parents’ natural affinity for technology to promote our programs.
Does your school, clinic, or program have a website? Have you polled parents to see if its features are appealing and useful to them? Do you utilize social networking sites to connect parents or texts/tweets to provide useful information? How can the activist personality of Millennials be harnessed to promote causes like Universal Newborn Hearing Screening and listening and spoken language opportunities for all children?
Is my child receiving good services from our teacher of the deaf/SLP/AVT/early interventionist? Well, how on earth would I know? How can I tell “good” therapy when I see it? How do I choose between Program A and Program B for my child? Where do I go from here?
Most parents of children with hearing loss were thrust into the job by accident. One day, you’re moving along, learning how to parent your child, and the next, you’re thrown into a whole new world full of professionals whose titles you can’t pronounce, jargon you are only beginning to understand, and more technology and appointments than you can fit in a day planner. You didn’t sign up for this, but it’s your life now and, like any good parent, you want to do your best. But how? Here are some great, free checklists available online to help you evaluate various professionals and programs. These can help if you are fortunate enough to have the choice of several programs or, if you only have a “choice” of one, to provide areas for improvement that you can discuss with your service providers.
How can I compile and evaluate information about communication/methodology choices?
Remember, YOU ARE YOUR CHILD’S BEST ADVOCATE! If you do not speak up for your children until they are able to speak for themselves, nobody else will. You have a right, as a parent, taxpayer, and consumer to critically evaluate your child’s services. Don’t let anyone tell you otherwise. Learn your rights, learn how to advocate effectively (Advocacy Tips for Parents), and build partnerships with high-quality professionals, organizations, and other parents to help you along your way!
Cochlear Implant Online is not endorsed by nor is it written by anyone affiliated with Cochlear, Med-El, Advanced Bionics, and AGBell. This website was created by Rachel Chaikof, who just happens to be a bilateral cochlear implant user, to create an awareness about cochlear implants and listening and spoken language.
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