Telephone Time

As a preschooler, we made sure that Hadley regularly talked on the telephone to build up those pure auditory and listening skills. Dan called from work to ask specific questions about her school day, and she talked to other relatives frequently. Sometimes, when we were delayed in traffic, I handed Hadley my cell phone and had her explain to her therapist, Lea, why we'd be late to that week's AVT session. Hadley did not use the t-coil setting on her hearing aids, as she found it annoying, but we discovered that increasing the volume on the phone worked just as well. She did especially well with our old Uniden 900MHz cordless phone, so we invested in battery packs for that specific model to last us for years. With consistent exposure, she was turning into a pretty savvy phone user.

Then we had twin boys and I became, well, busy.

Hadley still uses the phone a few times a week but, as her language and people's expectations of her have increased, I've felt less confident in her abilities on the phone. Despite living in a world of texts and emails, phone skills are a life necessity. I've noticed improved phone conversations with the new hearing aids, which automatically switch to the t-coil setting when held up to a phone. On my long list of things I mean to do, I've been planning to increase opportunities for Hadley to use the telephone, but still haven't gotten around to it.

Yesterday afternoon, the telephone rang. It was a friend calling to talk to Hadley.

As I went to fetch Hadley in her bedroom, I was thinking about what I'd do. She's talked on the phone with friends before, but not recently and not with these aids. Plus, kids can sound a little slushy over the phone wires. Would I stay nearby in case she needed assistance? Hover? Suggest that she sit in a certain room to decrease background noise?

I handed the phone to Hadley, told her which friend was calling...and she took it and walked back into her bedroom, closing her door. Oh, the other option I had overlooked: letting her manage on her own.

A few minutes later, Hadley came downstairs, still chatting away. She found her backpack, took out her homework folder, answered her friend's question about math, said goodbye, and hung up the phone. Then she returned to her bedroom. End of story.

I have a tendency to overthink things, which (although, at times, useful) can be annoying. I'd love to know what they talked about; if Hadley controlled the conversation or if it was more equally shared; if she had to ask for clarification; if she misheard anything. I could make recommendations for the next time the phone rings for Hadley or suggest that she call a different friend every so often for regular practice. Or I could keep my questions to myself and let Hadley roll with it. I'll probably wind up somewhere in the middle, where I'll ask her to answer the phone for me more frequently and increase those opportunities more naturally.
Two useful tips for the telephone:

1. If you are in the market for new cell phones, consider those that have an intercom feature for calling between extensions. While I have no interest in installing a phone in Hadley's bedroom, I do ask her sometimes to bring an extension into her room. She might not hear me call her name with music on or the door closed, but I can page the extension and she'll answer.

2. While nothing replaces actual phone conversations, there are a few ways to practice without a partner. One that I particularly like is Cochlear's "Telephone with Confidence" program. Although designed by a cochlear implant company, their listening skills programs are suitable for hearing aid users as well. After calling into the 800 number, the listener can opt to listen to a short list of single words as well as a recorded paragraph, then go to the website to download the day's entries to read what was said.

Insurance Coverage for Hearing Aids

Most people are shocked to learn that hearing aids are not covered by health insurance in many states. While a typical adult hearing aid user might choose to upgrade hearing aids every five, seven or ten years, children receive great benefit from newer technology on a more frequent basis, like three to five years. Digital hearing aids-- even the basic models-- cost about $2,500 per aid. If your child has a more severe loss, the price tag creeps upward. Add on the cost of earmolds, batteries, and other accessories, and the total cost becomes gigantic. Health insurance provides coverage for annual hearing evaluations and the newborn hearing screen that gives many of us the initial diagnosis...then stops there. Hadley is just nine years old yet, in that time, we have spent about $20,000 on her ears.

There are several bills in the Massachusetts legislation right now that seek to require coverage for hearing aids. I have written many letters to members of our state and federal government about providing coverage for ALL hearing aid users, regardless of age, but I'm throwing my support toward any legal effort to provide some substantial coverage. The next legislative session opens in several weeks, and H910 is expected to be filed in both the House and Senate then. This bill is supported by the Massachusetts Hearing Aids for Children Coalition. Public support is critical to the success of this endeavor. Won't you please consider signing the petition and sending a letter of support to the Commonwealth?

Just when you think you're in for an easy ride...

The new aids arrived late last week and Hadley was thrilled to receive them (and the cool green bag; she was psyched to discover that her audiologist had ordered the "junior" package instead of the "kids". A girl can have only so many stuffed animals and puppets with cloth hearing aids on them!).

We hit a minor blip on night one, connecting the iCom to the television. I'm actually surprised that, with the extensive home theatre systems many homes have, connection instructions assume you have a 1980 television and rabbit ears. Luckily for me, in our marriage partnership, I own computer repairs and my husband holds responsibility for the television and all those wires in the back. It took two nights of thinking it out, but he finally was successful.

Hadley was rather bored with the technical side, so instead of sitting her down and leading her through the parade of options, we had her try something new every day. She was having a blast with it until...one hearing aid started to crackle.

Seriously? A brand new hearing aid, and we're already troubleshooting. After an unsuccessful night in the Dry & Store, I brought it up to the audiologist. The good news is that a new hearing aid is on its way and Hadley has a loaner in the meantime. It was interesting to hear Hadley's response to wearing the new Naida in one ear and her old Siemens in the other. This was the first time since early August that she had listened with the Siemens, and she described it as being hollow, like an echo, and somewhat robotic. I expected that she'd adjust after a few hours, but that was not the case. She was so eager to get a Naida back in her ear that I picked up the loaner and brought it straight to her at school!

Hopefully, we'll be back on track in a few more days. Hadley's ready to try out listening to the iPod through the iCom!

Decision Time!

The order is in: Hadley's new Naida V SP hearing aids will be here by the end of the week! Hadley is excited, both about the new (to her) technology in the iCom and the selection of a more glamorous casing: giraffe print! (Who knew such a thing existed?). I've already promised a movie night to try out the iCom, so hopefully there will be no delivery delays and hookup will be easy.

It's a bit of a gulp purchasing another set of hearing aids when her most recent set is barely two years old. However, Hadley feels more confident and comfortable with these aids, which is an improvement that defies traditional measurement. She can't wait to get them on!

Demo Days, continued

It's now been about one month that Hadley has been trialing a new set of hearing aids. We haven't made an official decision to purchase them, but it's looking more likely than not (especially since it's been one month since Hadley last wore her old aids, so her brain has truly moved on to the new technology). I'm not jumping up and down with glee over these aids, but two events in the last week have definitely caught my attention.

Hadley was playing with friends outside, while the mom and I chatted nearby. Like most hearing people, I was vaguely aware of the usual sounds of nature and neighborhood. Suddenly, Hadley gave a little yell and a jump, shouting, "What was that sound?" While Hadley is often deserving of an Academy Award nomination for her theatrics, the expression on her face was clearly one of surprise, perhaps even a little fear. I took a quick mental inventory of what I could hear, and realized she was hearing cicadas. This was the first time she had heard the sound clearly enough to be able to distinguish it from random background noise.

Last week, Hadley and I had breakfast on the beach, enjoying the calm before the storm (well, the storm that wasn't). Hadley had discovered a ton of new seashells on the bay side, so we spent a lot of time wading through the water and exploring the tidal pools. Hadley kept looking across the bay for a motorboat that she could hear. Most everyone had taken their boats out of the water in anticipation of the hurricane, so it was clear that she wasn't hearing a boat. Finally, I realized she was hearing a landscaping crew at work at one of the properties across the bay. Sure enough, as we drove home, we saw two men at work trimming down some hedges at a property that backs up to the water. Boat motor, weedwhacker: they sound pretty much the same to me, too, from 1/3 mile away.

We'll be making a decision by the end of September, so I'll keep tracking all the little things that grab my attention and make a difference.

Demo Days, Take Two

Hadley returned to the audiologist late last week for a few more adjustments to her new hearing aid program. She has been pretty happy with the new Phonak V SP ever since. She comprehends more easily, processes information faster, and has requested far fewer repetitions. She's not as exhausted at the end of the day. I've also noticed that she puts her hearing aids on immediately each morning; in the last few months, they've been going in five or ten minutes after she wakes up. While that's a small amount of time, it is a big difference for a kid who used to put her aids in before she even got out of bed in the morning. She's also leaving them in until just before she falls asleep at night. Hadley has never been reluctant to wear her hearing aids or eager to take them off, and there may be absolutely no connection to this change in recent habit, but I thought it was interesting to observe.

Hadley was at the beach every day for over a week, requiring her to wear her waterproof hearing aids. I had wondered if her improved hearing through the demo aids was going to affect how well she liked her ancient waterproof aids (with ten year old technology!), but there was no mention of any difference.

As tough as it is to say, our decision to buy these aids will be based on how much better she hears with these aids versus their price tag. It's only been two years since we purchased the last set, with the idea that she'd wear them for closer to five years. Hearing aids are pricey and, as of now, are not covered by insurance (although Massachusetts is working on a bill to provide coverage for one aid per ear every three years). Hadley has been a hearing aid user for just over eight years, and we've paid (out of pocket) close to $15,000 on hearing aids alone, plus another $5,000 on ear molds, batteries, and hearing aid accessories. At $6.50 a day, that's a small price to pay for what we get in return...yet, it all adds up. We're fortunate that, by forgoing vacations or other splurges, we can contemplate these bills, even in a year that has been financially challenging for us. There are loads of families who don't have that option.

So, we'll continue to watch Hadley closely and note the improvements these news aids bring to her world. Of course, by the time all of the adjustments are made to optimize these aids to her hearing loss, Hadley's brain may have completely adjusted to hearing with this different technology, making a return to her old Siemens aids difficult (especially at the start of the school year). That $123.50 in coins that we wrapped yesterday may be put to good use!

Demo Days

Thursday afternoon, I picked Hadley up at science camp and gave her the new aids (Phonak Naida VSP) to trial. Once they were in, the very first thing she said to me was, "Your S sounds different. It sounds like a snake hissing." I let her know that she was probably just hearing more of the sound than she had before. Another minute passed, and she commented that everything was softer. This we expected, as the Phonak hardware is different from Siemens. I've been told by several audiologists that Siemens is loud, Phonak soft, and that a transition to Phonak hearing might not work for Hadley. Given the technology advances that Phonak has made (and Siemens has not), it was still worth a shot. I simply spoke a little louder, and Hadley was fine. She mentioned that my voice sounded robotic, which bothered her. This was when the camp exhaustion kicked in: she needed food and rest! Once home, Hadley vegged out with a movie; having her focused on listening and following the movie was a good way to let her adapt to her new hearing. By dinnertime, she announced that everything sounded better.

I already see improvement with these aids. I've kept track: Hadley has asked "What?" exactly four times since Thursday afternoon, each time when a brother was yelling next to her. She comprehends conversation immediately; before, it was as if she was on a two second delay while she pieced everything together. She's relying less on lipreading and visual cues. Listening on the phone isn't quite working for her, but that's probably something that can be fine-tuned with the software or improved with practice; sometimes each aid has its own sweet spot for listening that must be found through trial and error.

Hadley is liking these new aids as well, especially the size (they are almost 1/2" shorter than her current aids and fit more snugly behind her ear). She's finding it easier to listen and hear. However, she keeps hearing a crackling sound (that I can't hear when I listen to the aid; this might be her hair moving across the microphone) and doesn't like how sensitive the aid is when she lies her head down (with her current aids, if she pushes her head down on a pillow, she can stop the feedback. This is not happening with the trial aids). She asked last night if there were other aids to try out, so she can see what else it out there.

We return to the audiologist later this week for booth testing, where we will learn what impact these aids have on her hearing and discrimination. Overall, it's nice to know that are aids that give Hadley better access to sound. I like that she's being a smart shopper and is open to trying out other aids. Hopefully, we'll have a better idea of all of her options in the coming week.

"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?

The Dangers of Passive Listening

Hadley has been sick with a summer cold for the last five days: headache, fever, sore throat, sneezing, coughing, and now conjunctivitis and an ear infection. She has not been a happy camper, and the long days at home plus long nights being awake have taken a toll on us all (read: we're all cranky). Early this morning, she took out her left aid after complaining of pain in that ear, and put it down on her chair. I was mediating a property dispute between her brothers (item in question: recycling truck) while unloading the dishwasher and making breakfast, so noted to myself that one aid was out. Sometime later, Hadley left her seat to throw away her medical detritus (used tissues, cough drop wrappers, and hidden candy). I was vaguely aware that she said to me, "I'm wrapping my aid in tissue to keep it safe", but was in the middle of doing laundry and not in a position to take her aids.

Yes, we all know what happened next.

Sometime later in the day, I was fortunate enough to question why the mound of used tissues I had just picked up from the kitchen counter felt so heavy. A few synapses clicked, and I was able to rescue the abandoned hearing aid. It is now resting comfortably in the Dry & Store, where it should be.

Hopefully, the antibiotics she started today will kick in for Hadley to resume some activities tomorrow. At least we're not missing beach days at the end of the summer...

Prepping for Water Fun

Apparently, there's a law requiring that all early summer celebrations include significant activity with water balloons or, at the very least, water spray misters. Most of the school and sports celebrations that Hadley has attended the last few years included some serious water play. What's a kid with 6K of technology on her head to do?

Usually, if I know that an event is going to center around water play, Hadley will just wear her waterproof hearing aids. However, after several run-ins with water when you'd least expect it, I became prepared. Super Seals served us well when she was a baby, but they are expensive for infrequent use and have a short shelf life. The answer, ultimately, was the source of the problem: unused water balloons. Slid over each hearing aid, they provide enough short-term protection for a water balloon fight, water spray, or a few quick runs through a sprinkler.

It's easy to keep a few in my bag. Yes, Hadley could take off her aids but, when in a larger group of kids, it's preferable to keep her hearing and just add another layer of coverage. When the water fun is over, she just takes the balloons off and quickly dries her hearing aids to ensure that all moisture is gone.

Last weekend, Hadley celebrated the end of the softball and lacrosse seasons with some water balloon fun with her teams, worry free.

...and we're back!

A little thing called life got in the way of updating this blog for several months, but a steady stream of you keep asking me when I'm going to start it up again, so here we are.  You can all stop badgering me now!

It's spring (finally) in New England, and the cool mornings and warmer afternoons mean...(insert drum roll)...condensation!  The small plastic tubing that connects the earmold to the hearing aid can collect moisture in these conditions, causing all sorts of annoying problems: sound distortion, general funkiness and (the worst, for many reasons) itchiness.  At night, while she is sound asleep, Hadley jams her finger in there and goes to town.  Ahhh...relief.  Now that she's 8 1/2, it's not cool for me to clip her fingernails to the quick every week, as I do to her brothers.  The problem is that she can nick the inside of her ears, which then turn into uncomfortable cuts that hurt when she wears her hearing aids.  Not cool at all.  The only way for her ear to heal is to leave the hearing aid out...not exactly the ideal solution, especially on a school day.  She usually can tolerate wearing the hearing aid at school for at least half of the day, then removes it and puts it away safely in her backpack.  Not a great solution, but it's a compromise we can live with.

Yesterday morning she woke up complaining of ear pain and, sure enough, I could see the unmistakable signs of a little scratch in her left ear.  I dosed her up on untainted Motrin, gave her the standard instruction to keep the aid in for as long as possible, reminded her where to put it if she took it off, and sent her on her way. 

You're wondering where the story is here, right?

Late in the afternoon, after she returned from school and while I was prepping dinner, I suddenly heard one of my lights buzz.  All of our light bulbs are now the CF kind and, sometimes, they make that irritating buzzing sound.  I went room by room, turning lights off, listening for the sound, turning lights back on, but couldn't figure which one was the problem.  It's an annoying sound, and I was already annoyed enough as it was (by the calls of "Mom, Mama, Mommy...he did/she said/he said/she did").  I took a break (to transfer laundry into the dryer; fun break), and heard it again....from Hadley's schoolbag.  Sure enough, there was her hearing aid, partly on and whistling away merrily...nestled gently inside a case of Japanese erasers.  I wish I could tell you that I was so relieved to solve the case of the mysterious buzzing that I moved along with my day...but instead I reminded/reprimanded Hadley to store her aid in the specially-designed-just-for-hearing-aids container and put in her specially-designed-just-for-hearing-aids dryer when she returns home.  30 minutes of listening to intermittent hearing aid feedback would make even June Cleaver lose her cool.

(and today...she's wearing just one hearing aid.  At some point, you just have to admit defeat!).

Snap, Crackle & Pop!

The first six weeks of summer were filled with daily swimming lessons and, once the weather finally turned summery, frequent trips to the beach. As a result, Hadley's three waterproof hearing aids received quite the workout! Despite the waterproof name, her water aids aren't totally resistant to water and, after repeated use, start to malfunction. One water aid stopped working completely in mid-July and a second conked out in early August. I had been waiting for Hadley's next audiology appointment but, with two water aids down, it was time to make a special trip to drop them off for a repair. While we waited for them to return, Hadley wore just her one remaining water aid to the pool and beach. Now, Hadley is okay with just one aid-- it's not ideal, since the aid does turn off and on intermittently, but it gives her a small measure of safety. About a week ago, while at the beach, we decided to take a walk to the ice cream truck. I had Hadley put in one regular aid for the walk so she could hear better, for safety but also just in case she ran into friends along the way. The kids enjoyed their ice creams on the walk back, then raced into the water to clean up.

Have you figured out what happened next?

Sure enough, suddenly I heard Hadley shrieking, "Mom, Mom!" and I turned to see her running out of the ocean, holding her purple, regular, non-waterproof hearing aid in her hand. I had completely forgotten she was wearing a regular aid and she only remembered after she had ducked under the water, when it began to make this horrible sound. I cleaned the outside of the casing with a towel dampened with some plain water, took the battery out, blew away the moisture inside the battery compartment, gently dried it with a Q-tip that I always keep in her supply box, then we packed up and headed home. Within 30 minutes of being submerged, her hearing aid was in the Dry & Store, where it lived for the next 18 hours.

Remarkably, her aid sounded just fine the next morning and, after consulting with her audiologist, Hadley began using it again and headed off for a special two day vacation with her grandparents (she packed her old left hearing aid, just in case). A week later, the hearing aid still sounds great, but the battery door sticks a little bit, so we've sent it off for a repair (along with that final third waterproof hearing aid, for its regular end of season maintenance). Everything should be back for the start of school next week!

I guess I should be relieved that in 7 1/2 years of hearing aid use, this is the only damage we've ever done...hope it's a while before the next time (and, maybe, that it will happen while the aid is still covered under warranty!).

Understanding the Hearing Loss, Part 2

After I posted the last entry on our ongoing understanding of what it's like to live with a hearing loss, Hadley read it. After quibbling over some of the details, she simply said, "Some kids think I'm weird because I wear hearing aids." Being slightly addicted to reading parenting books, I knew to wait and hear her out. Her complaint? That in her school, she is the only kid of three hard of hearing students who wears hearing aids (the other two children hear with cochlear implants). As far as she is concerned, "normal" for her school is being a cochlear implant user. We talked it out and she went to bed feeling like she didn't need to wish for a greater level of hearing loss that would qualify her as a CI candidate.

I can appreciate her feeling of being alone in a world of cochlear implant users. When we first investigated therapy options, I met all these families with kids who used CIs. In two programs, Hadley would have been the only hearing aid user (although we ultimately chose the Auditory Verbal Communication Center for other reasons, a nice bonus was the mix of kids with hearing aids and CIs). Over the years, the majority of the families that I have met and most connected with are those who live in the CI world. Where are all the hearing aid users??!

Rarely does timing occur as perfectly as this. Yesterday, I picked Hadley up from her morning summer activity and she was beaming over making a new friend. As the details emerged, I found out that a new girl had attended the class and Hadley saw-- TA DA!!-- her hearing aids. I couldn't have planned it out better even if I had tried.

21st Century Solutions

There's no getting around it: Hadley misses a certain amount of instruction in her recreational activities. When she was younger, we dealt with that issue by either volunteering to coach her sports teams or hovering around the field, cluing her in to information she missed. At home, we reviewed instructions that were given and reminded her of key rules just before the next game or session. To be honest, there was a level of nagging involved that none of us liked!

By first grade, we were all in agreement that Hadley needed to be on her own more in these activities-- it was definitely time to put her skills to the test. Over the past year, we've learned a bit more about what works for Hadley (at least for now). Like any kid who is in the early stages of learning a new sport, there needs to be some support and practice at home. We realized this spring that Hadley wasn't sure of some of the new drills they were learning in lacrosse, so Dan and I made sure that one of us paid attention during practice to know what "Steal the Bacon" was all about. We had learned last summer that it helps Hadley to videotape short portions of swimming lessons, but she was self conscious of being videotaped this year. As a substitution, I tried to bring her to her practices 5 or 10 minutes early so she could watch the teams that were finishing up and have those images in her mind when her team began. This worked well for indoor soccer, since the acoustics in the building where they played made it nearly impossible for Hadley to hear anything.

This spring, I was surprised when her softball coach sent an email to the team, giving links to several YouTube videos about proper batting form. I had never thought about YouTube as an instructional site but, once I started searching, I found all kinds of instructional videos that seemed to be the perfect answer. Hadley loves watching the short videos and feels extremely grown up to be using the computer in this way. So far, Dan and I have found videos that help reinforce how she's being taught to swing her golf clubs and throw a lacrosse ball, as well as demonstrate swimming strokes. We've made sure to find videos that mirror what her coaches are teaching, but in just a few minutes of searching, we have been able to find a video that suits the purpose. Some of her coaches, when asked, already have a few to recommend. The end result is that Hadley has gained a better understanding of what her coaches are teaching and is able to fill in some of the missing gaps. She is more confident of herself and more inclined to throw herself into each activity. She is engaged in each activity from beginning to end. Hadley even received a special sportsmanship award at the end of the softball season this spring!



She may never be a star athlete and she may drop some of these sports sooner than later. For now, it's another way for Hadley to connect with friends, learn in a group, and finetune the skills needed to be part of a team-- just like all the other kids. Plus, she's got a load of cool new t-shirts to wear all summer at the beach.

Taking the Big Step: Kindergarten

As kindergarten grew closer, Dan and I discussed more and more whether the local neighborhood school was the best placement for Hadley. While our town’s integrated preschool had been a wonderful place for Hadley, it was located in another elementary school in town. Only Hadley and two preschool classmates would be continuing on in the neighborhood school; her friends would be spread out in the other two buildings. I had some reservations, some related to her hearing loss and others centered around her total education. In addition, our house no longer worked for us as a family of five and we were interested in finding a new home. After some thought, we decided to move to my hometown, 15 minutes down the road. Not only would we be closer to family, but Duxbury had a long history of educating oral deaf children (as opposed to the town we were in) and we knew of two families there with children with profound hearing loss around Hadley's age, both of whom were oral. Two days before school opened, we made the move!


Hadley on her first day of kindergarten, September 2007

Our priority for Hadley was to focus on her social skills. We were content to put academics in the back seat for the year and just wanted to help her with basic social situations that still seemed to mystify her. Like many kids with hearing loss, Hadley loved to control the activity (which makes it easier to anticipate what is being said or done). Kindergartners were less likely to acquiesce to Hadley's ideas, which Hadley took as a personal insult. Hadley was used to adults listening to her and extending her conversation; five and six years old were making giant segues in topics. Hadley missed little social cues; she would sometimes have no idea that her words or actions hurt or angered someone (if she were focused on listening to another speaker). Likewise, she would sometimes imitate the physical behavior of other students, not realizing that the behavior was teasing. We absolutely knew that some social strategies needed to be directly taught to her. As the year progressed, Hadley made improvements in small, but specific, ways.

Additionally, kids were beginning to ask more questions about Hadley's hearing aids. While she was very adept at giving basic information, she was also really tired of talking about her ears. She became more conscious of being different from other kids, although she still enjoyed accessorizing her earmolds and hearing aids-- the kids in her class were always enthusiastic about her colorful and glittery earmolds!

We had always planned to purchase new hearing aids for Hadley by kindergarten, but delayed that purchase as we were interested in learning about several aids that were due to enter the market. When we had last purchased digital hearing aids for Hadley in 2003, options were somewhat limited for a child with a severe hearing loss. This time around, there were more good choices, but we were able to narrow the selection down to three. When we took a closer look at the technical specs, I was surprised to see that there were aids that were actually too powerful for her hearing loss! The market had certainly expanded. In the end, we only trialed one set of aids: the Siemens Centra SP. After discussing it with quite a few professionals, we opted to stay with the Siemens brand, as Hadley had done extremely well with their technology. It took several months for us to get the program just right, but it was clear from the start that Hadley could more easily discriminate subtle sounds. Most importantly for Hadley, she was able to select a new color for the casing: translucent purple!

All in all, kindergarten was a good year for Hadley. We had anticipated what would be most challenging for Hadley and were able to work with the school to bring about good improvement, both socially and emotionally. While not a perfect process, we all felt confident that Hadley would have a succesful transition to first grade in the fall-- especially Hadley.

Hadley on her last day of kindergarten, June 2008

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.

Water Aids

"The beach is awful for kids with a hearing loss."

A year into AVT, an experienced professional whom we highly regarded shared this opinion with us. This was the very first time we had heard of anything being hard or restricted because of Hadley's hearing loss. Until that point, all of our conversations with cert AVTs and other professionals who believed in oral communication had been centered around building Hadley's listening and talking so she could fully participate in all of life. We had never talked of things being impossible, and this one floored me.

I grew up in a beach community. Our summer days were spent by the ocean or in a pool. I basically lived in a bathing suit from June to the end of August. Sharing endless summer days at the beach with my daughter was something I planned on doing. Of course she would love the beach! I just needed to figure out how.

I spoke with Hadley's audiologist about my interest. Although she did not sell many, she recommended a Japanese waterproof hearing aid that could withstand being submerged in water. We purchased one-- hearing aids are expensive and not covered under insurance-- and tried it out. The Rion HB-54 (aka Dolphin) was fantastic! Hadley wore her "water aid" to the beach, giving her the freedom to move in and out of the water without any of us worrying about keeping her regular hearing aid dry. She loved listening to the surf, the calls of the sea gulls, the splashing water. We spent that summer on the beach or in the pool, getting every penny's worth out of the $1,100 purchase.


July 2003 (her water aid is attached to her suit with a pink clip)

The following summer, we decided to purchase a second water aid. One aid gave Hadley enough access to sound for safety and basic enjoyment, but only from one side of her body. A second water aid could only make things better and easier for her. What amazed us was how much better and easier things became! We met Hadley's cert AVT at the beach for one session, and Lea was amazed that Hadley could stand at the water's noisy edge and repeat the Ling Sounds from 10 feet...then 20 feet...then 30 feet away. We played the same listening games at the beach as we did in the office, and Hadley performed as aptly at the beach as she did in indoors. While the water aids were far inferior to her regular aids, they gave her enough power to hear, and her excellent discrimination skills and coping strategies took care of the rest.


Celebrating Hadley's 4th Birthday at Duxbury Beach (September 2005)

Hadley has now used her water aids for six summers. As her swimming skills have improved and she goes underwater more, she's found that she prefers to leave her water aids out while in the pool. The water aids cut out while water is draining out of them and sometimes crackle, both of which she finds annoying. After some trial and error, I've decided that it's best to have adult swimming instructors who have the skills to teach a child who can't hear them (many beginning programs in our area are staffed by high school and college aged instructors). We seek out smaller classes and I stay at the pool's edge to assist when needed. I take pictures and even shoot short videos of the lesson to help focus on a specific skill. We're learning to adapt as necessary.

Swimming Lesson, July 2008

Hadley loves the beach, and easily switches between her two sets of aids during the warmer months. We now live in the same beach town where I grew up, and I love that she'll have similar memories of being a kid on Duxbury Beach.


September 2007

Tips for Using Water Aids
1. Hadley always wears a strap with her water aids-- I do not want to be looking for a lost aid on the beach! We buy all of her straps from The Ear Connection.
2. Water aids need to be really dried after use. I rinse them in clean water, remove the batteries, then immediately put them in the Dry & Store when we get home.
3. I replace the batteries each time we use the water aids. Being submerged in water does drain the batteries faster than usual, plus the batteries get wet and corrode. To avoid this, I just throw out the batteries and replace them the next time.
4. I use a Q-tip with a tiny amount of rubbing alcohol to remove any corrosion from inside the battery case.
5. We keep a set of hearing aid supplies in an OtterBox. I have a small one (1000) that fits in my bag and a large one (8000) that has all the supplies. You can even put a desiccant pack in there to help with moisture.
6. At the end of the season, when you know the water aids will no longer be in regular use, send them out for a cleaning and performance check. This keeps the aids in great condition and prevents any damage from incurring during the months of non-use.


May 2008

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.

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 Journey to Hearing Aids

As new parents, Dan and I were at a loss. The information we were given, to wait two months and have her tested at a rehab hospital, seemed inadequate. Life was busy, however, with new parenthood and we went along with the nurses’ advice to forget about this for a while and test Hadley’s hearing at home by banging pots and pans. Those first few weeks at home with Hadley were pure joy. We loved having a baby in our lives and threw ourselves into parenthood. After a few days, the sharp ache in our bodies brought about by the news of her newborn hearing screen abated. In fact, there were days when we didn’t think too much about it. Our fears would immediately resurface anytime we played the “did she hear that?” game. Rarely were we able to say that, in fact, she had.

In mid-November we brought Hadley to a local rehab hospital for reevaluation. Over the next several weeks, we returned to have her hearing tested, each time leaving without certain results. Our gut instinct was that the audiologist who tested Hadley was not sufficiently educated in infant hearing loss, but we were not yet skilled in being strong advocates for Hadley. Luckily, Hadley’s pediatrician presented her case to his fellow medical colleagues that resulted in the recommendation to refer her to a doctor at Boston’s Children’s Hospital. Once there, we felt that we finally were on the right path for Hadley. We were given a wealth of information and were encouraged to be active students in learning about hearing loss. This was the motivation we needed to become aggressive in our own education.

At four months, Hadley was diagnosed with a severe bilateral sensorineural hearing loss and given the approval to receive hearing aids. The red line in the audiogram above shows what Hadley hears without her hearing aids, all well below the "speech banana", which is the frequency at which spoken words are heard. We learned her hearing loss was caused by a mutation of the Connexin 26 gene. After another false start with the earlier audiologist, we were referred to another audiologist who specialized in fitting young children. At six months, Hadley received her first set of hearing aids and began wearing them immediately. Here, she sits with her great grandmother, on her fifth day of wearing hearing aids. You can see her fingers exploring her left aid!

Despite thinking of hearing aids for several months, seeing them on Hadley was very strange. They were large, behind-the-ear hearing aids that we secured to her body with a bright pink strap (that she selected!). When the audiologist first turned the aids on, no drama ensued. She wore her hearing aids during all waking hours with minimal fuss. At six months old, life was changing dramatically for Hadley every day; suddenly hearing the sounds of the world was no more startling than learning how to flip over to get a new view of things. For Dan and me, all we could think about was making sure her hearing aids were on, in correctly, clean, staying out of her mouth... Our worries and questions were endless. This was going to take some getting used to.