AG Bell 2010: Research Symposium and Sunday Concurrent Sessions

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 http://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!”