When it pays to be an AVT kid

Some people struggle to understand the difference between auditory-verbal therapy and other oral methods to develop spoken language in deaf and hard of hearing children. Even professionals in audiology and education have questioned why our kids need something other than speech services. I've always maintained that my daughter's hearing loss has nothing to do with what comes out of her mouth (what a speech language pathologist addresses) but is centered around what goes into her ears and processed by her brain.

With auditory-verbal therapy, Hadley learned how to maximize her hearing through careful listening and speech discrimination. We kept our expectations high as she began to talk, put words together, followed simple commands, then more complex requests. We talked in quiet rooms, but also in larger groups, crowds, restaurants, outside, at the playground, at the beach, in the car. We listened to sounds around us: household sounds, animals, instruments, music, construction, and weather. As she grew older, we expected more: just as one would with a typical child.

Part of my motivation to put so much language into Hadley from a very young age was out of concern that she would lose more hearing in her grade school years (something the research supported, at the time). As she experienced complications, through medical problems like ear infections to technology failures with hearing aids, I realized the importance of giving her the needed skills to continue to communicate with the whole world during these episodes. It's hard, but her ability to attend school and activities during these times is a direct result of the auditory-verbal tools she has developed (and continues to fine-tune).

In the nine years we have been in the AVT world, we have met some amazing friends and families who live and breathe AVT as we do. Several of their children are experiencing significant complications right now with their hearing that will likely require surgery in the very near future and follow up therapy. These AVT kids rely more than ever on their careful listening, attention to cues, and ability to discern and decipher speech sounds...and they can do it because they've been pushing themselves this whole time. AVT kids prepare like extreme runners: they learn the basics, then continue to push themselves to improve, listen more closely, and understand more complex speech more quickly. We know it's not easy, even though they make it seem so effortless, and are thinking of G, J and O as they are forced into this very unexpected marathon.

Doing what's best for...

While it's always a great time to see crowds of family and friends over the holidays, it's not always the easiest of listening environments for Hadley. I'm more proactive than reactive in these situations, mainly because the combination of excitement, sugar and high energy along with the listening challenges can be a recipe for disaster. While I normally give Hadley the time and space to make her own decisions, in crowded situations I'm usually ready to step in and speak quietly and directly to her, when necessary. For those family members and friends who generally see us during the holidays or at large gatherings, they may have the sense that this is how we always interact with Hadley, hovering and intervening. Hadley makes listening and communicating seem so effortless, it's easy for people to either forget that she lives with a very significant hearing loss and sometimes struggles.

Along with the holiday chit chat, I find myself answering questions about Hadley and her hearing from well-meaning, well-intentioned adults. For whatever reason, this year several people questioned whether some of my actions were truly necessary, particularly the act of physically moving closer to Hadley in large crowds to communicate with her. Couldn't I just sign? Rely on lip reading? It's such a chore to get up and move over to her; to quote one person, "sometimes you have to do what's best for mom", that there's a lesson for kids to learn in being put second. Why don't I do what's best for me? Certainly it would be simpler for me to mouth instructions across the room to Hadley, flip my hands or fingers a few times to get my point across. Why not?

Here's the deal: at nine years old, we're halfway through our time with Hadley. In just a few short years, she's not going to have a knowing adult keeping tabs on her from across the room, silently cuing and correcting her. These are the years where she needs us to intervene, so she knows what to do in the future when it's just her. We don't want her to develop simple coping skills, we want life skills that can carry her into adulthood and beyond. That may mean pausing my own conversations to help her now. I may be on high alert during new activities (like basketball this winter), not chatting on the sidelines but instead keeping myself available to clue her in now in order to allow her to be more independent later. Some might see this as hovering, but my intent is to get as much direct information into Hadley now so she can handle the world later.

So, yes: right now, we're doing what's best for Hadley. Our time will come at some point in the future, but we only have the present to get into Hadley as much academic and social learning that is possible. Forgive us if we let a conversation pause or lapse; if we take longer than what you think is necessary; if we intervene more frequently than you think you would, if in our position. And thank you to all those people who may not exactly understand why we do all these things, but support our choices nonetheless.

Support John Tracy Clinic's Quest for 250K

In addition to weekly auditory-verbal therapy sessions, we also participated in John Tracy Clinic's birth-to-five distance learning program for several years. This free program provides very detailed and very practical instructions each month on how to promote oral language in your hard-of-hearing child. In return, we submitted an update on Hadley's hearing health and speech progress, answering specific questions that corresponded to the monthly lessons and recommendations. A JTC professional responded by email, following up on any of our questions and providing individualized suggestions based on the information we shared. While it's been years since we participated in the program, I still use many of their worksheets to explain hearing loss to Hadley's teachers each year.

In addition to the online program that helps families all over the world, JTC provides audiology, early intervention and academic services to families living in Southern California. They are currently in the running to win $250,000 through the Pepsi Refresh Project to further fund their preschool program. Please take a moment to vote for them each day during the month of December.

"I Can Stream Netflix to My Ears!"

Audiologists will tell you to expect three to five years out of a set of hearing aids for a child. We are at 2 1/2 years and I'm already antsy to trial new models. I've never loved her "new" aids, mainly because I feel they gave her just slight improvements over her previous set. However, Hadley reported better hearing, and I really thought that, with a little fine-tuning, we would eventually find the sweet spot. Yup, I'm still waiting.

Over the last six months, we've been hearing "What?" and "I didn't hear you!" more and more throughout the day. Booth tests still showed Hadley's regular, consistent results, so I've been wondering what else could be the cause: the head cold that never went away; speedier and more complex language; loud brothers; a bad batch of batteries. Despite doing more listening activities with her (AVT never goes away), the struggle continues. Hadley is weeks away from entering third grade, when the brunt of teaching and learning turns auditory. I'm worried that we haven't done enough.

A booth test last week showed a decrease in Hadley's word recognition and, before I could ask, Hadley's (wonderful) audiologist asked if we'd consider trying a new aid. YES!!! After practically stalking Phonak's and Siemen's websites for months, lurking on listservs, and scrolling through conference websites, I've been thinking about new technology and wondering if I'm crazy to consider dropping the equivalent of a family trip to Disney (airfare included!). I love when the professionals validate my wishful thinking!

Convincing Hadley was another thing. "I love my purple aids!"; "I chose these aids myself!"; "I don't want any other aids ever!". I finally let slip a little bit of information that I had hoarded: we can buy an adaptor that will wirelessly stream an iPod directly to her aids. Right now, if she's not plugging it into the stereo directly, she either listens to a Nano with its built-in speaker (like it's 1985!) or winds the earbuds around the top of her hearing aids (functional, but not pretty). She stopped dead in her tracks while her eyes truly opened like saucers.

"Mom. Does it work with TV?"
"Yes."

"The computer?"
"Yes."

"It streams stuff to my aids?"
"Well, yes."

"So...I can stream Netflix to my ears!!!"

Not that there was any doubt, but Hadley is a true child of the 21st century. I happily agreed that yes, she could stream the audio from a Netflix movie that she watched on TV directly to her aids, relieving her of the "chore" of turning the volume from 35 (what seems to be normal listening volume on our system) to 40 (what usually works best for Hadley). Ever since, Hadley has talked about how she can't wait to demo a new set of aids. So excited, in fact, that she talked at length today to her 100-year-old great-grandmother about how she could stream sound to these new aids. Talk about a generation gap! (I described it as listening to the radio...close enough?)

So we wait...this time for the call that tells us to pick up a loaner set to demo for a few weeks. The timing is perfect, as Hadley has Ecology and Camp Invention coming up in August (how lucky are those kids?!). Awesome audiologist? Check. Ideal testing conditions? Double check. Eager recipient? Triple check. Now, if only Phonak would start offering casings in green (Hadley's favorite color), I could declare all out perfection.

I'm not sure who is more excited to start testing aids, Hadley or me. I'm trying not to get my hopes too high up...but it would be so nice for her to start third grade knowing that the seemingly simple art of listening and hearing wasn't going to be so hard. And, seriously, how cool would it be to stream Netflix to your ears?

Reading "Never Ask a Bear"

Hadley is hoping to create a video series of reading aloud some books. Here is her first entry, recorded this weekend. She is reading "Never Ask a Bear" by Louise Bonnett-Rampersaud.

I should point out that this is not a well-known book in our house; Hadley picked it out for her brothers a few months ago, but had not read it again since that time. She pretty much plucked the book off the shelf and asked me to start recording. Kids living with a hearing loss (particularly those who have learned to listen and speak through auditory-verbal therapy) can be fluid readers, can add appropriate inflections to the text, can pick up the cadence and rhythm in poetry...and eventually can do it all seamlessly. Perhaps, with enough practice, my camera skills will someday be worthy of her reading!

Hearing Pride

Hadley sometimes makes comments about how her hearing is improving and that she thinks she can now hear sounds that previously were impossible to hear. Sometimes she even goes the extra step and states that she may not need to wear hearing aids when she is older. We've always been careful to be supportive, but straight forward with our responses to her. We talk about how she can understand more without her aids because she is working harder to read our lips and fill in the gaps with clues. We talk about how her listening and comprehension skills are always improving because she continues to work so hard on them. We talk about how technology evolves and changes and that the hearing aids she will wear in the future may be much smaller and different than those she wears now. We even talk about the scientific research that is ongoing with Connexin 26 and the special role she can play by participating in various studies that might help Cx26 kids who are born years from now.

In all of this, I've never thought about how Hadley feels about the amount of residual hearing she has (what she can hear without her hearing aids). I've certainly thought about how she feels about the amount of hearing she doesn't have, but not the reverse. As she gets older, she mentally catalogs the sounds she can hear both with and without her hearing aids, similar to how we tracked her response to sounds in the early months of AVT (ok, yes, it was on a spreadsheet and I had charts showing changes over time). There's a certain amount of wonder and surprise to this, especially when she realizes she has heard an exceptionally soft sound with her aids. She has a huge amount of pride in her ability to make these discriminations-- particularly when she is relying on the limited hearing that she actually has without her hearing aids. At a time in her life when I once anticipated she would be unhappy with what hearing she didn't have, instead she revels in the hearing she does have-- and, like the other AVT kids we know, makes full use of each and every decibel she has.

Do You Know the Sign for...?

We have never used sign language with Hadley. We've had our share of (mostly unpleasant) encounters with people who disagree with this decision, and we've had countless conversations with family, friends and strangers, letting them know that a hearing loss is not an immediate ticket to an ASL class. We think Hadley is the perfect proof that children with hearing loss can be fully oral, fully mainstreamed, and fully functional in today's world-- especially with early identification, amplification and intervention.

I've always prepared myself for those conversations and explanations. I worked with Hadley to make sure she could explain what her hearing aids are and what they do. I explained to her why we chose auditory-verbal therapy and the other options that were available. What I never anticipated was that Hadley, herself, would have to answer why she doesn't use sign language.

When people see hearing aids, they automatically think sign language-- even little kids! (Thank you Sesame Street and other children's programming, I guess). This year, as a first grader, Hadley has had numerous classmates ask her to teach them signs. Hadley loves to share information and loves to be correct, so she's been upset to give the answer, "I don't know". At first, she would come home a little angry that kids were asking her questions to which she did not have an answer. We came up with some responses, like "I don't know sign language either". Kids just followed that up with, "Why not?". We came up with a few more explanations: "I can talk just like anyone else"; "I can hear like you when I wear my hearing aids"; "Just because I wear hearing aids doesn't mean I have to sign". We talked about how special it is that she can listen, talk and hear just like other kids. She didn't bring it up again, so I thought these responses were working for her.

Well, I don't know how often this has happened, but Hadley recently let me know that she now just makes up a sign when asked. "It's easier, Mom. I'm too busy to explain everything else" is how she explained it to me.

I'm resisting the part of me that wants her to be the poster child for spoken language...the urge to have her educate the masses...the desire to turn her into a walking billboard for the success of AVT. She's doing what we've always wanted her to do: figuring out for herself how to live with her hearing loss. And for right now, for her, that means making up a sign to answer another seven year old's quick question.

Sharing the News, Sharing the Work

When we first learned of Hadley’s diagnosis, we shared the news with just a few people very close to us. Conclusive tests were scheduled weeks in the future and, since there was nothing obvious about her hearing loss, we chose to wait until we had real information to tell. After several months, once we knew her loss was permanent, irreversible, and required amplification, we began to get the word out.

Although I disagree with his communication methodology, David Luterman's book When Your Child is Deaf: A Guide for Parents helped us to understand the reactions that other people might have, especially family members who might need some time to grieve. While Dan and I had moments of sadness, for the most part we were too busy developing a medical support team for Hadley to dwell much on the what-could-have-beens. This diagnosis was only life-altering, not life-threatening. We quickly had a core group of family and friends who were ready with the support we needed.

Hadley received her first set of hearing aids when she was six months old, then started AVT sessions the very next day. Suddenly, we had so much to learn-- all at once! We made sure that people who had regular, frequent contact with Hadley learned how to insert and take care of her hearing aids. Several family members attended AVT sessions with us, participating in activities and learning how to best interact with Hadley to flood her with language. We explained AVT as the method with the broadest possible outcome: a girl with a hearing loss who would listen, comprehend, and speak like any other person.

We were fortunate to have many people take a close interest in Hadley's development. Family members played a huge role (and still do), in a variety of ways. My parents were daily visitors during the week, reinforcing all that we were doing in AVT sessions. For several years, my aunt hosted a weekly playgroup for me and her daughters, where Hadley could hang out with kids around her age and start to figure out all the social intricacies. Hadley learned to use the telephone through frequent phone calls from my brother. Hadley was also lucky enough to have four great-grandparents who delighted in her, and constantly reassured us that "she'd be just fine, she doesn't miss a thing." Many friends checked in frequently with us, not getting upset when we'd be too busy (or, really, too tired from talking all day) to return a call or get together. Our friends with children let me drag them into games and activities that reflected goals we were working on in AVT. One friend used to agree to a playdate, then automatically ask, "What do you want to work on today?"

We have heavily relied on the network of family and friends who understood what we had to do to get Hadley to listen and talk. Along the way, there have been some people who haven't understood the choices we have made, whether it was the communication method, lack of sign language use, or just the plain fact that for several years, we put Hadley's language development first above anything else. We did what we had to do to get as much language into Hadley as possible, then attempted to shove a little more in there too. If we ruffled a few feathers along the way, so be it. We wanted the broadest possible outcome: a girl with a hearing loss who would listen, comprehend, and speak like any other person. We've got that, and more.

The Experience Book

This is adapted from a piece I wrote in March 2006, when Hadley was 4 1/2 years old. The Experience Book is something I worked on almost daily for about four years (I think we have 12 or more volumes, plus shorter thematic books too!). As you can read in the article, I didn't always love working on the book, but they were--without a doubt-- among our most powerful tools in developing and strengthening Hadley's expressive language. I never got around to doing a traditional baby book for Hadley, but these books include all those pieces and hundreds of bits more about our first few years of being a family.

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We learned of Experience Books at our very first auditory-verbal therapy session. Lea mentioned how important they are throughout these early years to encourage and sustain strong language development. She told heart-warming stories about how children love to read about themselves, love to pore over old experience books, and even carted our her daughter’s first experience book from over 20 years ago. I quickly put together a photo album of Hadley’s relatives, favorite activities, and prized toys. Lea said it was fine, but when was I starting an experience book? I made another album filled with regular daily occurrences, pictures of Hadley brushing her teeth and eating breakfast. Lea sat me down and said, I need you to draw instead of take pictures.

I thought, what in the world is this woman talking about?

Hadley’s first experience book was started at age 13 months. Most every day of her life has been chronociled in her experience books since then, now numbering seven volumes. Everything Lea first told me about Experience Books has come true. Hadley loves to read and reread her books, taking great delight in discussing the pictures and reliving fun memories. She has favorite pages that she returns to again and again. I love to look through them to remember important milestones: when she began identifying shapes and colors, said her first sentence, or used the toilet for the first time. We remember snippets of our lives: the night we watched the sky turn a brilliant purple while the sun set, the week in March when we could watch the sun rise over the trees, the excitement when Hadley held a baby in her arms all on her own. Most importantly, these experience books have hammered language into Hadley’s being, helping words and ideas and thoughts gel in her brain and generate themselves into clear and concise language. These experience books have become the most important tools we have used in two years of auditory-verbal therapy.

And I still dread doing it.

I am not an artist. I am not a terribly creative person. I procrastinate and habitually delay doing things until the very last minute. I am unorganized and rarely know where my things are. However, I recognize the importance of these experience books and value the impact they have had on Hadley’s life. And, since I have yet to do anything with the box of pictures that will someday become her baby book, these books have become a wonderful collection of the big and small moments of Hadley’s first 2 ½ years. So, I have compiled a list of things that have helped me continue to create this incredible tool and family tribute.

1. Use quality materials. I have used sketchbooks with heavy weight paper as well as scrapbooks. I like bindings that allow the book to lie flat; it’s easier for a young child to read and for the artist (the parent!) to draw.
2. Develop your books around themes. Our earliest books just end whenever we ran out of pages and needed to start another book. After a while, I opted to do a seasonal theme and have since created these books around Spring (March – May), Summer (June – August), Fall (September – November) and Winter (December – February).
3. Find a separate special home for the Experience Books. We have a basket where all the books are kept. They are in a well-used room so there is no chance that they can be hidden away and forgotten. We have them in a prominent place to encourage visitors to look at them and ask questions.
4. Keep a list handy for ideas. There are days when I will be at a loss about what to include in the day’s entry. Some days, I have so many ideas that I can’t use them all. I keep a list (actually, a few of them!) where I jot down ideas to remind myself: that Hadley discovered that some music is sung and some only has instruments; that she was a good friend to someone who was angry; that she told a joke. I purchased an inexpensive pocket calendar where I can write down date-specific entries in case it takes me a few days to make an entry into the Experience Book, or you can grab any free calendar that you might find at a bank or store.
5. Save things! Anything that is mailed to Hadley eventually finds its way into the book. We include tickets, receipts, leaves, drawings, pictures, artwork—anything that Hadley finds interesting or important enough to comment on. We spend a lot of money on double-sided tape.
6. Involve the child. Around 2, we began asking Hadley what she thought was the favorite part of her day. On busy days, we’d ask her to be specific about the favorite part of a certain activity. Usually, we can use her answer to create the day’s entry in the book. She is now old enough to help out with the drawings or do them herself. We have high hopes that someday this will become her special project and she will make it her own.

7. Involve others. Other children and even adults have been guest contributors to the experience book. Often, the entry is a picture that someone has drawn (Hadley came to visit my house today, or Hadley and I had fun pretending to be giants).
8. Share the responsibility. The experience book should not be something that just one parent does. Let’s face it: most of us don’t want to spend 10 minutes every night or 1 hour every week working on the book. We have too much other stuff to do. The experience book is such an important tool that you don’t want to risk it becoming a chore. Share the wealth and find a way for both parents to contribute.
9. Don’t gripe. It’s taken me 18 months, but I am finally comfortable with skipping a day now and then. Sometimes, there really isn’t anything to comment on. Some weeks you need a little break. My personal rule is to always have something for at least 5 days of the week—otherwise, you really start to skimp.
10. Be the star of the day. Lea suggested early on that we find one day and just take pictures all day long of all of our activities, and use those to create a photo book of a day in the life of our child. As a joke, I chose May 5—Cinco de Mayo—when Hadley was seven months old to do this book. When Lea saw it she said it was great—and suggested we do it every single year. So, we now do an annual Cinco de Mayo book each year. It is a ton of work, but so much fun to review them.
11. Focus on AV goals. While many of the entries are based on events in Hadley’s life, large and small, we also use some days to focus on a short-term goal, like the articulation of a certain sound or learning to categorize objects.
12. Focus on parenting goals. Once I realized how important these books were to Hadley, I found ways to use them for my own purposes. We have included entries on how to be a good friend, bad behavior, what to do when you have a cold, and how to wash your hands. We’ve also highlighted good decisions and behavior: the day Hadley took her medicine all by herself or chose to speak calmly instead of screaming. It still amazes me how reading about herself and talking about the entry helps promote the desired behavior.
13. Don’t be afraid! You do not need to be the world’s best artist. You do not need to labor over each entry. If your drawings are unidentifiable, just label underneath. Your child will learn to distinguish one stick figure from another.
14. Use colored pencils. My early books were done in crayon, which quickly smeared and smudged. Colored pencils have worked well, especially those that can be erased as well. Markers sometimes bleed through the paper.
15. Don’t sweat the small stuff. Ultimately, these books are for your child. Pages will rip; just tape them up. Pictures may be scribbled upon; just talk about how once a picture is complete, we don’t add to them again. A page may even be torn out. It doesn’t matter. Your child will still love to read the experience book.
16. Record those heartwarming moments. My favorite entry is a drawing I did of a bright full moon rising over a pond, where the moon is just over the tops of tall pine trees. Hadley noticed the moon on a drive home one night and we talked about it for 20 minutes. It’s a moment that we may have otherwise forgotten, but now whenever she sees a full moon, Hadley reminds me of that one night.
17. It’s all about talking. It doesn’t matter what you say about each entry when reviewing them with your child for the umpteenth time. Your child will learn about the nuances of language if you talk naturally about each one. How boring if you always say the exact same thing on each page. This isn’t a story! Ask questions of your child. Mention a memory you have of that same experience. Use it as a way to launch into an activity. Let them do the reminiscing.
18. It’s all about reading. The Experience Book is a great early reading tool. Write clearly and carefully so your child isn’t trying to translate your scrawl. When your child begins to sight read, use the known words in the experience book to reinforce the learning.
19. Make it their own. At some point, the child can assume the responsibility of the book. This can be a fun activity, especially if the parents have modeled it as being something fun to do. Let them take on the ownership; this might mean that the book looks very different or is made from different materials. Let them run with it. Some families have the Experience Book morph into a school book that is shared between family and teacher or a book that reinforces teaching themes presented in the classroom.
20. Have fun! If creating an Experience Book is becoming too burdensome, take a giant step back. Find a way to make it manageable. It is quite possible to have several children, a fulltime job, a calendar full of activities and still produce a great Experience Book.

The Experience Book has been an integral part of Hadley’s development. I really can’t think of another tool that we have used that has been more effective in developing and fine-tuning language themes for her. I may still gripe about it, but it is worth every bit of effort that I expend.

The Preschool Years

Hadley had just turned two when we began to investigate preschool options, as most programs in our area required applications almost a year before attending. Almost all of the programs required children to be three before September 1, making Hadley ineligible until she was nearly four years old, thanks to her late September birth date. Dan and I wanted her in a program earlier, both for the language modeling by hearing peers and the social interaction. This narrowed our search considerably. I attended an open house at our town's integrated preschool and, while the teachers were clearly excellent, I was hesitant to place Hadley in a classroom where most of the children had language delays. We opted for the local Montessori school, a place that Hadley had loved during a visit, that complemented our own learning strategies in place at home, and that another family member had attended in the past. All of our conversations with the staff went well and we felt we had all done what we needed to ensure a positive experience for Hadley. We were as eager as Hadley on her first day of school in September 2004.

Hadley initially did well in the Montessori classroom, but after several weeks the teacher informed us that Hadley was having trouble working independently and often just wanted to chat and play with other classmates. As this is counter to the Montessori philosophy, she was redirected by the teacher to her own work. As time went on, more problems arose. We tried to make it work for six months, but finally decided that Hadley was not a match for the program. This was an agonizing process for us: while Hadley was very happy with her friends there, the structure of the classroom did her more harm than good. It was time to search for another placement, which would be difficult as all application deadlines for other programs had passed.

As Hadley was on an IEP, she automatically qualified for the integrated preschool program in our town. Dan and I returned to the school to observe the classroom where Hadley could be placed. Nearly two years had passed since I had last visited, and I was now observing a different teacher. Now knowing what would be best for Hadley, we were pleased to see the structured routine, very small class size, the ease of transition from center to center, and the actual children who would be Hadley's classmates. While the level of spoken language was still below what would have been ideal, we knew that Hadley really needed structured social interaction with her peers to help resolve some of the negative experiences she had in her first classroom. Hadley's own expressive language and articulation had also developed well, so we were less concerned with language modeling in the classroom. We just wanted her to have a good time in school.

Hadley finished the school year at the Hingham Integrated Preschool, and went on to spend two more years in their program. She was fortunate to stay with the same veteran teacher during this time, which allowed them to build a strong bond. Having a teacher experienced in early elementary education and special education meant that Hadley's teacher could easily interpret Hadley's moods and responses to situations, and quietly make appropriate changes as necessary. The class was evenly split between children receiving special education services for a variety of reasons and role model peers. Hadley developed friendships with all of them. She was aware of the different learning differences between her classmates and felt good about being in school with other children who had to work harder at certain things. I was surprised by how nice it was to spend time with other parents who were dealing with various medical issues, who could appreciate the challenges inherent with raising such a child, who were juggling family lives full of therapy sessions and doctor's appointments. We were all in the same boat but, since our children had different diagnoses, none of us had to justify our decisions specific to our child (something we all acknowledged happened sometimes when you talked to parents dealing with the same situation).

Weekly two hour AVT sessions continued until Hadley entered her final year of preschool in September 2006, at age five. Hadley's cert AVT had a can't-pass-this-up opportunity to work for an AV center in Australia for the school year. Hadley's annual reports had continued to show excellent progress in all of her AVT goals, so we planned to use this school year as a transition to kindergarten year. We were fortunate to make arrangements with a recently certified AVT who had regularly participated in our AV sessions for a year. Carrie came to us once or twice a month during that school year, guiding us through a final year of AVT and making sure that Hadley was well prepared to start kindergarten. We were ALL ready for real school to start!

Hadley receiving her preschool graduation certificate from her fantastic teacher!

Learning to Listen through Music

Some people question why you would make music and singing such a large part of a hearing impaired child’s life. It never occurred to us not to. Like most new parents, we naturally sung to Hadley from the moment she was born. Some days, singing while rocking was the only way to calm her down and keep her relaxed. Other days, I would sing song after song after song to her; I liked to think it was because she loved it, but truly, it helped keep her happy while passing the time on some long days.

In our AVT sessions, we frequently sang familiar childhood tunes and nursery rhymes, using music and song to extend a simple activity in a lesson. We talked about how singing a word made it easier to hear all of the speech sounds present in that word. I love music and I love to sing, so using those methods as a way to increase Hadley's awareness of sounds and words was a no brainer.

In the early months, we used music as another way of increasing Hadley's interest in different sounds and developing her skill in discriminating one sound from several. Although I actively decreased the amount of background noise in our home during this time (using the dishwasher, washing machine and dryer at night), I did play music quietly during some of our structured AV time to challenge Hadley's listening.

A favorite toy of Hadley's when she was ten months old (four months aided) was the Fisher Price Little People Zoo where all the animals made sounds. Her favorite thing to do was to make the bird chirp the music to Have You Ever Seen A Lassie and dance along to it. Usually we would sing along too, and sometimes we'd sing the version The More We Get Together. A few weeks after getting the toy, Kate, her grandmother, put on a new Raffi CD and had music playing in the background while Hadley was playing in the kitchen. The first song was The More We Get Together. Hadley bolted over to the zoo (as fast as she could crawl) and immediately began to make the bird sing along too. It didn't even take more than a few notes of Raffi singing the song for her to make the connection with the song on the zoo. This was the first time she independently connected two musical sounds together.

There's a lot of bad children's music out there, but some gems too. I sought out music that highlighted one singer at a time, so the words were well articulated. I looked for music that was not overpowered by loads of instruments all vying to be loudest. I especially loved shorter songs that could be used during certain activities (cleaning up, calming down) or combined with toy props to become an activity. Here are some of our favorites. I have separated them by age ranges, but there are great songs on each album for each age.

Babies & Toddlers (most of these songs are under two minutes and are about concrete things)
Laurie Berkner
Red Grammar
John Langstaff: The Jackfish and Songs for Singing Children
Elizabeth Mitchell
Woody Guthrie

Preschoolers (longer songs that focus more on telling a story)
Dan Zanes & Friends
Justin Roberts
Carole King: Really Rosie
Raffi (I'm a lukewarm fan, but since so many preschool teachers use his songs in the classroom, it's great for a hard of hearing child to have the early exposure to them)

We listened to far more musicians that this list (Peter, Paul & Mary; Pete Seeger; Leadbelly; Burl Ives; Lisa Loeb; They Might Be Giants). The ones above are those that we actively used for learning, not just listening enjoyment. Additionally, we used Warren Estabrooks' CDs Songs for Listening! Songs for Life! and Hear & Listen! Talk & Sing!. In the last five years, PBS and Noggin have highlighted a wide variety of great children's musicians. There are more and more great artists to hear about.

In addition to compiling a great library of children's music, Hadley joined a Kodály based music class when she was one. This method is the perfect complement to auditory-verbal therapy as it places the highest value on teaching the parent/caregiver, who teaches the child. The class was highly structured; relied on props, finger play, and short books to augment the songs; included a wide selection of folk music; included a brief segment each week with real, age appropriate instruments; and incorporated lots of movement and dance. Even better, the class was easy to replicate at home, which we did several times each week on our own. The class was small, and the teacher, Sarah Moran, was phenomenal. Not only did Hadley latch on to the class, but she especially connected with "Teacher". Hadley and I took the weekly class together for 2 1/2 years, and later Hadley took private piano lessons and sang in a kid's chorus, performing twice with the group. Hadley's brothers are now in the baby class, and she is a fantastic teacher to them. Singing was integral to Hadley's ability to articulate speech and develop a natural sounding voice. She developed better breathing patterns that helped her with some of the softer sounds that were problematic for her. Listening to music in the car was a great way to improve her ability to focus her listening on the person speaking, and tune out the background noise of the car and music. Above all, music has given her confidence-- a hard of hearing child can never have too much confidence!

This video, taken in October 2005 when Hadley was 4 years and 2 months old-- and very into Halloween, as the song will show-- shows how well developed Hadley's self-correction was, both for words and tune, and the ability to memorize and sequence.

The First Key to Success: Reading

Everything we read about raising a child with a hearing loss always included the same obstacle: these kids need extra help learning to read. As an avid reader, someone who ready early and frequently as a child, I wanted to do everything possible to not only encourage a love for reading, but to provide Hadley every chance to develop a strong foundation for reading readiness.

The following is from an article I wrote that was published in 2004 in Volta Voices, a publication by the Alexander Graham Bell Association for the Deaf and Hard of Hearing. It appeared alongside an article written by Hadley's cert AVT, Lea Watson. The two articles, Ten Books a Day Keep the Doctor Away and Thirteen Tips for Reading, appear in their entirety on the AVCC website.

How We Encourage Reading
1. Model reading. Hadley knows that we have shelves of books in the house that are ours, not hers. Even though her dad isn’t as book crazy as her mom, she sees him read the newspaper and magazines. We point out readers to Hadley, at home, in the library, and when we’re out around town.
2. Buy books! My own philosophy is that you can’t have too many books, so we made a decision early on that while we wouldn’t spend a fortune on a ton of toys, we would invest in a wide variety of books for our children.
3. Create a physical space for books at home. Hadley has one main play area at home with shelves for books, but we also have small baskets of her books throughout the house, next to a rocking chair, in bedrooms, and in the car.
4. Go to the library. We go to the library at least once a week, where we look at the paintings in the art gallery, look for a few books for me, then settle into the children’s library to where Hadley is encouraged to pick out books on her own. We keep her library books in a special place at home, which makes it easier to explain that some books stay at home and others need to be returned.
5. Pick up on favorites. When Hadley asks to read a book over and over again, we immediately check out other books by the same author or illustrator.
6. Be creative. We make “books” out of songs Hadley enjoys, either by drawing (we are not artists!), finding pictures that go along with the lyrics, or downloading clipart from the computer. Hadley likes to read through her own photo albums with captions and her Experience Book, sharing them with family and friends.
7. Make it fun! We act out books as much as possible (with toys, puppets, felt, whatever we have at hand), make up songs to go along with the story, and have a good time with reading. Sometimes we read the book to a stuffed animal or puppet.
8. Make it her activity. Hadley chooses which book to read and where to read it. If she decides halfway through that something else is more exciting, we just come back to the book later. Sometimes she just wants to read a favorite section of the book, which is fine too.
9. Read throughout the day. Reading is definitely an important part of Hadley’s bedtime ritual. But it’s also part of getting dressed, eating lunch, and waking up from a nap.
10. Vary the narrators. It’s boring to have the same person always read to you. When we have visitors, we ask Hadley to share a book with them. It’s especially fun for Hadley to have older kids read to her.
11. Pack a Bag. Hadley is used to selecting which items she wants to bring along when we go visiting. Books are always included, another great way to ensure that others are reading to her.
12. Sing it! Many books are based on well-known songs or can be set to their own tune. There are many beautifully illustrated songbooks of nursery rhymes and old favorites. Several of Hadley’s first phrases were based on lines from songs in books.
13. Be poetic. The cadence and rhythm of poetry is interesting to most people and is a nice break from the routine of reading a traditional book.

I don't recall exactly when Hadley began to read. At her IEP 3 year review in the Fall 2007 (age 6), Hadley's reading scores were at the Grade 5 level for reading comprehension and Grade 7 level for reading instruction. In a separate test conducted in August 2008, she had the vocabulary score of a 12 year old. I think it's important for other parents to know that, with the appropriate amplification and intervention, children with significant hearing losses can read, read well, and read often.

Becoming Verbal

Hadley's language development began slowly, but steadily. She eagerly vocalized sounds and was able to recognize that certain sounds (aahhh) corresponded to certain objects (airplane). Her receptive language-- the words she heard and understood-- grew quickly. However, as time went by, we acknowledged that her expressive language-- what she verbalized-- was lagging. Working closely with Lea, her auditory-verbal therapist, and her team of audiologists (at Children's Hospital Boston and South Shore Hearing Center, where her local pediatric audiologist worked), we focused our attention to the proper programming of her hearing aids. In 2002, there were few hearing aids available that were both powerful enough for Hadley's severe hearing loss and small enough to fit well behind her ears. We had opted to buy an analog aid that other babies had used successfully, the Phonak SonoForte (Phonak has long since upgraded this line). Her hearing aids provided her with enough input to acquire language, but not enough to truly learn the subtle differences between certain speech sounds. She was not a candidate for a cochlear implant. The audiologists assured us that Hadley would soon be big enough for several digital hearing aids that would give her better access to sound. We opted to continue with AVT; it was working, just not as quickly as we wished. Her team of specialists, including Early Intervention, were all in agreement that Hadley's evaluations did not indicate any other underlying cause to her slow progress. We continued to work on developing Hadley's consonant sounds, which made incremental progress, and showered her with language. Our reward was her ever expanding receptive language and continued attempts to express herself verbally. At age two, Hadley received a new pair of hearing aids, the Siemens Triano SP, a digital hearing that could be more finely tuned to her hearing loss. There was no immediate difference with these new hearing aids. On the third day of wearing them, Hadley awoke from her nap and I heard a subtle but noticeable difference in her articulation. Consonants that previously had been faintly pronounced were much more audible. It was similar to turning the dial to a radio station; everything about her speech was more crisp, more pronounced. Hadley's brain had needed 2 1/2 days to adjust to processing sound in a new way, but suddenly it all clicked. In the months that followed, Hadley's expressive language exploded and her articulation improved to the point that most people were able to understand about 75% of what she said--pretty normal for a toddler.

In the following video, taken in February 2004, Hadley is 2 years, 4 months.

The First Year of AVT

Hadley was six months old when we began our two hour weekly AVT sessions with Lea Watson. Initially, we treated AVT as a big research project. I read every book I could about auditory-verbal therapy, joined every organization for parents of hard-of-hearing children, learned what other auditory-verbal programs did, and reviewed all of the research on genetics and hearing loss. I joked that it was just like being back in college, except my grade was my daughter's development.

For me, the key to making the first year of AVT work was having complete faith in Lea. By the time we met her, Dan and I had already weeded through various professionals in our quest to develop a strong support team for Hadley. We had a sense of what we were looking for. There was an instant connection with Lea that developed quickly into a strong trust of her judgment. I remember telling Dan that I would do everything she suggested for six months in order to make the best effort at making AVT work for our family. Looking back, that effort was similar to maintaining an exercise routine or giving up caffeine. We made an immediate lifestyle choice to commit ourselves to AVT. This was not rocket science: talking, singing, reading books- all normal, natural things you would do with any baby. This was a decision to be actively engaged in developing our daughter's listening and speaking skills, and all that encompassed. It seems so simple, but it made a significant difference.

To Work or Not to Work

I have always been that person who loves her job, whether it was working at a beach house restaurant or advising graduate students on their job search. I had a truly great position at the Boston University School of Management, and a boss who really valued balancing work and home commitments. I expected to be a parent with a job outside of the home; we had excellent daycare and a flexible work schedule arranged. I felt a responsibility to maintain my job, as my own mother had. Between my maternity leave and Dan's family leave, one of us was at home with Hadley for the first six months. As we thought more about her hearing loss, the number of appointments, the commitment to therapy, and all that went in to raising a speaking child with a hearing loss, we began to question our decision to both return to our jobs.

Logistically, one day of every week was needed for auditory-verbal therapy. Our two hour sessions were held in Gloucester, at least a 75 minute drive from us, in each direction. Looking at the calendar, we had at least two additional appointments every week, for audiology and Early Intervention. We also knew how critical the first months of listening were, as well as beginning therapy. We just didn't want to risk that time. So, with some trepidation, I left my job and focused on being an at-home parent.

I treated my role at home as my full-time job. "Work hours" were focused on creating a world full of sounds and rich language for Hadley. I left each AVT session with Lea with a list of things to do: research to review, books to read to Hadley, weekly focus words and sounds, toys to use, activities to do. For the first few months, I was in project mode. This was familiar territory for me.

(Since then, I've met any number of AV families who have balanced work, therapy sessions, and family life all very admirably. The beauty of auditory-verbal therapy is that anyone can do it. All of your interactions with your child can be rich with language and meaning. You can find caregivers who are willing to understand the fundamentals and implement them with your child; a good caregiver will recognize these as beneficial and necessary to any child, regardless of hearing status. It's all about making AVT work for your family and your circumstances.)

Choosing Auditory-Verbal Therapy

While working with the team at Children’s Hospital, we also began our own research on Hadley’s hearing loss. We learned about Sue Schwartz’ book, Choices in Deafness, and immediately read that to familiarize ourselves on the different approaches. Instinctively, we knew that sign language was not going to be a part of our life. While we had attempted to incorporate a few signs into our interactions with Hadley, it always seemed forced and contrived. We wanted her to speak! Choices validated for us that there were several other options that held great potential for Hadley. One of them especially, auditory-verbal therapy, struck us as being most appropriate.

We narrowed our options to three programs in the Boston area and began the task of interviewing. Following the typical philosophy of scheduling the first interview with the program of least possible interest, we made an appointment with Lea and Jim Watson at the Auditory-Verbal Communication Center. We had mentally crossed them off our list as their office was quite a distance from us (on the North Shore! through Boston!), but wanted to meet them since people we respected at Children’s spoke of the Watsons in reverential terms. Armed with two pages of questions, a laundry list of things we wanted from a program, and the desire to get going with responding to Hadley’s hearing loss, we showed up at their office door one March morning. Within a few minutes, both Dan and I were feeling great about our decision to meet with them. Within 30 minutes, I was half listening to Lea and half dreaming of what it would be like to come here every week. 2 ½ hours later, Dan and I walked back to the car considering the possibilities. As we drove back to Boston, the drive didn’t seem as long and the earlier list of cons didn’t appear as daunting. More importantly, we were thrilled by how Hadley had responded to Lea (and this was prior to receiving her hearing aids) and how Lea interacted with all of us. I told Dan I was very pleased that our first of three interviews had gone so well, that I knew that there was at least one good option out there for Hadley. Dan described me as simply being giddy with excitement.

The following week, Hadley and I observed a preschool nursery in Boston and met with the director and other parents. I knew immediately that this was not the place for Hadley—everyone was signing and excited about their children’s signing progress, but little was said about their language development—and kept looking at the clock, wishing I could leave. While the time there was valuable, I knew that this was just not the place for our family. The day before we visited the third place on our list, Clarke School East, I called Lea and made plans for Hadley to begin AVT. While we did attend that last interview, I spent the time comparing their philosophy to AVT and measuring their therapists against the Watsons. There was simply no comparison. We knew we were making the right decision by choosing AVT.

All along, AVT seemed like an obvious choice to us. Dan and I felt that we were absolutely the right people to raise Hadley in a speaking, listening and hearing environment. We wanted a relationship with someone who would acknowledge and respect our right to educate Hadley and serve to guide us along this path.

From Here to Hear

At some point this March 26, I'll stop in the midst of everything and remember that on that day in 2002, Hadley received her first set of hearing aids. The very next day, she and I got in the car and drove for 90 minutes to her first auditory-verbal therapy (AVT) session. I had no idea what to expect that day, no idea if AVT would work, no idea what to expect down the road. At that time, I was consumed by Hadley's hearing loss, always wondering to myself, "Will she ever talk?"

Seven years later, Hadley talks. Hadley listens. Hadley sings. Hadley argues. Hadley does everything we ever could have expected, and then some. This is how we got there...and where we go from here.