Talking 24/7

And, we're back (again)!

2011-09-12T09:54:00.001-04:00

Unintentionally, I took the summer off from this blog. Here's a recap:

Hadley finished third grade, which was an overwhelmingly positive year. Caring and compassionate teachers make all the difference, and she had that in abundance. Despite crazy childhood illnesses keeping her from school a whopping 17 days (!!), I'd say it was her best school year yet.
Summer 2011 was devoted to amusement parks (Hershey Park and Dutch Wonderland in Pennsylvania and our more local favorites, Story Land and Santa's Village in New Hampshire). Hadley tested the water resiliency of the Naida in some of the tamer water rides like log flume roller coasters (no problem), but stuck to her water aids for water park rides like wave pools. She also opted to remove her hearing aids on fast rollercoasters at Hershey Park on the off chance they'd fall out. Next time, we may bring our old, trusty SafeNSound straps to better secure them.
When we weren't away, we were either at the beach, in a pool, or playing in water, somewhere. Hadley's water aids got a workout this summer! Each aid is at least eight years old now, and I'm not sure how much more we can eke out of them. We live in a beach community, so having great access to sound in wet conditions is vital for Hadley. We'll have to make some decisions in the coming year.
Thanks to this blog and referrals from AVT professionals, I had a chance to talk and email with other AVT parents from all over the world. It's fun to connect with other families, especially those with young children still in regular therapy sessions.
While I wasn't writing here, you can read what I was up to.

We're now back to school, adjusting to new schedules, new teachers, new activities and new expectations. Things are good!

A Blast from the Past

2011-06-12T13:53:00.002-04:00

Hadley and I dropped in on an AVT session this week, joining another family with two school aged HOH children who switched to auditory-verbal therapy this year. It's been more than four years since Hadley's last official AVT session; I was excited to return and Hadley was a little apprehensive. She remembers many details of her weekly visits with Lea, Jim and, later, Carrie, but was somewhat nervous of being judged or graded! It took only seconds for her to shake it off and get back into action...the girl does love to impress, after all.

We had never officially met this therapist before, so it was interesting to me to see her style and approach toward older kids. AVT is family-centered therapy, and I've always felt it important for the therapist to be more of a friendly supporter of the family than an instructor of the child. This is especially true when the meeting is taking place after a long day at school. I love then the child is included in the plans for the session, and liked how the therapist pulled out the previously agreed upon AVT goals and shared them with her student. Almost 10 year old girls can be a tricky audience, but the activities they did were all on target with their interests and kept their attention. I was impressed!

Halfway through the session, when the girls were doing an auditory memory exercise involving listening to and repeating back a complex sentence, I suddenly realized that this was the first time in a while that I was sitting at a table and completely focused on Hadley's words. Sure, we talk a lot, but that's often while driving in a car, over a meal with two preschoolers, or in the midst of errands or chores. Even when I'm "listening" to her, I'm often multi-thinking, going over the things I need to do, noticing stuff that needs to be put away, or remembering some long-lost thought and desperately trying to retain it. This time, I was really listening to her words to see how accurate her speech discrimination and memory retention was (pretty accurate!). It was a good reminder to me to make sure I'm that focused on her more frequently, when her words are actually more important than a repetition of an American Girls article.

My other takeaway from the session is how glad I am that we've always focused on strengthening Hadley's listening and speech discrimination skills in all environments, not just quiet situations. This is something we did in AVT sessions from the very, very beginning and it's stuck with us (despite other professionals in the hearing loss field instructing us to restrict environmental noises, like the dishwasher, air conditioner, or washing machine, as much as possible). Background noise exists in the regular world and there won't always be a soundfield system or other additional technology to make things easier for her. Hadley's not 100% in these adverse hearing situations, but then again no person is, regardless of hearing status.

When we transitioned out of our regular weekly AVT sessions, I was somewhat apprehensive of giving up the safety net of regular contact of a trusted professional. I worried that we might miss signs of Hadley regressing or facing difficult situations. Over the five years, I've lost those fears and have felt confident in our ability to build upon her early AVT foundation. Seeing Hadley in action this week confirmed that all for me. I'd strongly recommend anyone who has "graduated" from regular sessions to take a trip back sometime. I can't wait to crash a session again!

As the World Turns

2011-05-16T21:21:00.000-04:00

When Hadley was first born, I never thought there would be days when I would forget that she lived with a hearing loss. But, sure enough, one day I realized that I hadn't yet thought about her hearing aids or hearing status. We were just living life and rolling with it.

Not one to document all of life's little moments, there were still many times when Hadley would say or do something so extraordinary (or, to be honest, so outrageous) that I'd think to myself, "Oh, I'll never forget this. No need to write it down." I've since forgotten a bunch of them (which is okay, because there are always new moments being made).

Yet, with all of these stories, I never once imagined that I'd forget any of the technical details about Hadley's hearing loss: the nuts and bolts of her audiogram, her hearing history, her hearing aid specifications. These are the absolutes of her life that are basically tattooed onto my brain. I use these facts constantly with educators, professionals and other parents. It just can't be possible for me to ever forget, right?

Last week, while searching for an old hearing aid to temporarily replace her current one that was in need of repair, I found myself trying to remember which were her last hearing aids. Were they the brown Trianos? The purple Centras? How could I possibly not recall this? And if I'm forgetting these details after just nine years, what will I forget in the next nine?

Hadley's fantastic AV therapist sent me a puzzling message on May 5, asking me if I had snapped many pictures on Cinco de Mayo. Why would I do that? Hours later, I recalled that for five years, I took pictures of Hadley all through the day to create a day-in-the-life-of-Hadley experience book. These books took hours to create and were read and reread constantly (and are now tucked away on a bookshelf in our office). I talked to other parents about how fun it was to make these books and how useful they were as a therapy tool. How could I have forgotten?

Meanwhile, Hadley's back up hearing aid has been in my wallet for two weeks. I keep meaning to put it safely away in its container until the next hearing aid malfunction, but other things (broken washing machine, rescheduled dentist appointments, a gazillion kids activities) get in the way. I'm compulsive about cashing even the smallest checks right away, to avoid having them fall out of my wallet, but I've been walking around with 3K worth of tiny technology in there. I used to always have at least a one month's supply of batteries on hand for her hearing aids, plus spare packs in my bag, the car, and her backpack...we have a single lone battery, total, right now. What is going on with me?!

A friend further down this path (her hard-of-hearing kids are in high school and college) reminded me that this is all okay. We're living a typical busy family life, one that happens to include extra details related to hearing loss. Some days these details are very, very important. Other days, not so much. Luckily, right now our focus is on the final weeks of the school year (June 22!), spring sports (softball and golf), and making plans with family and friends. As weird as it is to say this, hearing loss is taking a back seat right now...and that's okay with all of us.

****************
I know, nearly two months without a post. What happened? Well, the kids swapped viruses for most of March and April and finally shared them with me, giving me the gift of pneumonia. We've been making up the lost weeks of school work and building up our energy so we can enjoy the spring and summer...if it ever arrives here in the Northeast!

Facebook and "Special Education Week"

2011-03-21T18:48:00.000-04:00

If you're on Facebook, chances are you've seen variations of this over the last year or two:

"People need to understand that children with special needs don't have an illness, they are not looking for a cure, only acceptance. 93% of you probably won't copy and paste this! Will you be in the 7% that will and leave it up as your status for one hour? It's Special Education Week!"

This has bugged me since the first day I read it, but I'm finally getting around to blogging about it. Here's a newsflash, folks: there is no "Special Education Week." You probably already figured that out, since this status appears from time to time throughout the year. Not a big deal, I agree.
But this line gets me every time: "they are not looking for a cure, only acceptance." Guess what, folks: they want that, too! They want a cure! Really, really, they do!

Sure, acceptance is great: most kids forget that Hadley has hearing aids on her head. (Until the teacher has them write nice things about their peers. Then Hadley receives 20+ comments about how well she listens.) Classmates jump at the chance to use the microphone with the soundfield system or turn the speaker off; they all love reminding the teacher that the lapel mic is still on. Every once in a while, someone may tease, but that's been pretty isolated so far.

Acceptance is fine... but Hadley still feels different. Yes, she does really well: her speech is great; she reads incredibly well; she advocates for herself; she's a good student. But feeling accepted by her peers doesn't change the fact that her life is different than a typical 9 year old girl. It might make things easier sometimes, but it doesn't change facts.

Adults have a different version of acceptance: pretending the difference doesn't exist or minimizing the challenges that Hadley faces every day. I've had school team meetings where I've spent more time explaining the real obstacles Hadley encounters than determining appropriate services and accommodations. In their haste to show their acceptance, sometimes adults rush a conversation with their assurances of understanding, declaring that they know exactly what I mean and thereby missing the message entirely. And, yes, sometimes adults tease (it's not funny to say to me, "What is she, deaf?") or are completely inappropriate (like the parent who, at the integrated preschool open house, leaned over and whispered to me, "I hear there's a deaf girl in the class. That's not good.")

Yes: acceptance is all fine and dandy. Knowing that nearly all the people Hadley meets will try, in some form or another, to learn a little about her and understand her is fantastic. All kids need that kind of safety net in their lives. No, we don't live under an umbrella of naivete that there will be a cure for Connexin 26 related hearing loss...but that doesn't mean we don't want one.

So, next time you're tempted to be one of the 1, 3, 7, or whatever incalculable % of Facebook users to update about Whatever Week for acceptance, think for a moment and, if you really must paste and post, take a moment to edit your copy to include the word "cure." Quite honestly, we want both: for everyone around our children to be welcoming, friendly, and understanding of all their needs, special or not. Just because these particular kids wound up with an unexpected twist of genes doesn't mean we limit ourselves (or them) to mere acceptance. It's okay to hope for a cure, whether its within the realm of possibility or not. We do.

The Friend Connection

2011-03-06T22:46:00.004-05:00

Finding other families with hard-of-hearing children seemed like such an important thing to do when Hadley was younger. It was obviously helpful to me, as I shared my ideas and complaints with other parents who understood the not-so-obvious challenges of raising a child with a hearing loss. I took it for granted that some day Hadley would want to know other kids who listen to the world through hearing aids. In our years of auditory-verbal therapy, we overlapped our sessions to meet other children and their families. This was great for me and Hadley liked it too, but there was nothing special or unique about her interactions with other kids. They were simply kids playing with kids, just with a few thousand dollars worth of technology on their heads.

We happen to live in an area with several other mainstreamed hard-of-hearing children, all of whom are being raised to listen and speak with their voices. I thought now that Hadley was older, she might seek these kids out or benefit from some regular contact with them. Hadley really likes them all, and I've loved getting to know the parents, but there is nothing special or unique about her interactions with these kids. They are simply kids playing with kids, just with a few thousand dollars worth of technology on their heads. (Are you sensing a theme?)

Earlier this winter, I was asked to speak to another mom in the area and answer some questions about auditory-verbal therapy for her daughter. Who is also 9. Who was also identified at birth with a hearing loss. Who also wears hearing aids. Who also is spirited, outgoing, talkative and dramatic. We agreed to introduce the girls to each other, and I really though it would be just like before: they'd meet, they'd have a good time, they'd go home.

What passed over the following two hours was straight out of a movie. They immediately checked out each other's hearing aids (and clothes). Hadley and E compared trials and tribulations of living life with a hearing loss (and compared favorite music and toys). They unconsciously repeated words and rephrased sentences if the other misheard or misunderstood what was said. It occurred to me that Hadley was displaying the truest version of herself to E. The thin, protective wall that often exists while playing with other kids wasn't there.

Now, some people might read that statement as a reason for like to stay with like: that schools and communities for the deaf and hard-of-hearing provide environments for these kids to be their natural selves. Instead, I took this experience as a way for Hadley to further understand how she can hang out and play with all of her friends. We talked a bit about how it felt to meet E, if they played differently with each other, how they handled sharing and decision-making...and how Hadley could use these same strategies with any friend. Hadley and E have played together and emailed a bunch of times since first meeting in December. Each time, they talk less and less about their shared hearing loss and more and more about their other shared interests. Their friendship continues because of all these "others"; the hearing loss may have initiated their meeting, but their personalities will shape and define their relationship with one another.

So, no, I really don't think Hadley needs hard-of-hearing friends now any more than she did in the past. Certainly, this might change as she grows older and I'm open to that possibility. What has remained a constant is that I still need to know parents of hard-of-hearing kids. I learn so much from their experiences and bouncing ideas off of like-minded adults. Since I'll continue to seek out these parents who are committed to raising their kids to listen and speak, I know that door to making new friendships will always exist for Hadley as well.

In the end, hearing loss or no hearing loss, it's still pretty awesome to make a really good new friend. I have a feeling this is just the first of many more pictures to be taken of these two.

Why baby classes matter

2011-02-27T16:48:00.003-05:00

I'll say it again: music was a huge influence in Hadley's language development from a very early age. Not only did I want to replicate that experience for my sons, I wanted them to know "Teacher", the woman (Sarah) behind this amazing music class.

Conor and Brady began attending the weekly Kodaly class when they were about 18 months old and I felt that was already late, as Hadley began at one year. From the start, Conor and Brady had dramatically different reactions to the experience. Brady was fully absorbed in the class: listening intently to the music, following Teacher, observing the older children, and mimicking hand gestures. In contrast, Conor couldn't wait for the class to end. The music was familiar to both of them, as we had listened to a CD of the class countless times. Of the two, Conor spent more time at home listening to and creating his own music out of our collection of instruments. He clearly loved music, but on his own terms.

Yet, week after week, I kept going with both boys, waiting for that day when it all came together. Year one passed...then two. While Conor's ability to stick with the class increased over time, he never once sat and participated for a class in its entirety. He knew the routine, stayed for the parts he enjoyed, left the circle when he grew disinterested, and returned to the group as his interest returned. Some activities he actively avoided, others he rushed back to join, so there was a predictable pattern to his behavior. At home, he sang all the songs and repeated many of the games, demonstrating that he was an active listener to the entire class, whether he was participating or sitting on the sidelines. He loved going to Teacher's house for Hadley's private piano lessons. Yet, each week Conor complained about going to his own music class.

Year three began last fall, and I'll admit that I was hesitant to sign them up. Let's face it: all of these activities require precious time, energy and money. We had already spent two years trying to make this work. I replicated most of the class at home, to the best of my ability. Was it time to admit defeat? I decided to give it one more class...and that was the class when it all, finally, came together.

Who knows what combination of factors finally caused Conor to sit and actively participate. Maybe it was his age (3 3/4 years). Or that he had just started preschool and was getting used to following group activities. Or he forgot over the summer break from class that he used to not participate. Whatever it was, Conor sang each and every word of each and every verse in each and every song. He sat and sang along to books. He sought out his favorite instruments. He grabbed a blanket and lay down to listen Teacher's lullabies. He sang out his goodbye. Looking at him, you'd never know that this boy had been a bystander for the previous 50 classes.

But Conor doesn't have a hearing loss-- why am I telling this story? Every parent of a hard of hearing child will tell you about living through plateaus: those long periods of time where your child doesn't show amazing progress, growth or improvement. Trusted professionals, after confirming that there's nothing else impeding development, tell you to wait it out and just keep doing what you're doing-- but that's so hard to do when there's no proof to those efforts. Plateaus exist for all people, and the message is always the same: keep on working at it, because those efforts will finally pay off.

I've had many conversations about why I should have stopped music class, why babies can't be expected to participate at this level, that it's unfair to push a child in an activity that is not enjoyed. I've had friends try this class and, exhausted after one hour of chasing down their toddler, announce that they'll try again when the child is older, that it's a waste of money otherwise, that it's too hard. Had I believed any of that, Conor would have started class again at square one, not knowing the songs, the routine, the structure, or the expectations. My actions would have suggested to my children that attendance at activities is only supported when participation is practically perfect.

Early exposure does make a difference. Continued exposure reduces lag time and gaps... whether we're talking language development or music appreciation.

Conor during instrument time, February 2011

The space and time to talk

2011-02-09T11:14:00.003-05:00

In one of our early AVT sessions, Lea and I (and my father, who was attending the session) got to talking about babies and babbling. Lea stressed the importance of letting babies play and practice with sounds without the distraction or interference of adults. At the time, Hadley was about nine months old and, while she happily responded to sound and voices, she wasn't really playing with different sounds. Sure, she made sounds and altered the pitch and volume of her voice, but that was about it. Lea shared a simple observation that babies at the current time (this was 2002) spent less time on their own than in earlier times when infants were left for short periods in playpens. While she never said, "Kerry, place Hadley in a playpen for 20 minutes every morning and afternoon", her comments prompted me to consider how to balance surrounding Hadley with language with giving Hadley the chance to explore her sounds.

As many first-time parents, I had several firm opinions about how I'd raise my child, and being playpen free was one of them. Not only did the baby books I loved disapprove, but some of my earliest memories involve being on the "freedom" side of a homemade play enclosure, built for a family member who was confined for medical reasons. My dad and I spent much of the 90 minute car ride home talking about playpens, gates, and play spaces. Ultimately, I heightened my awareness of times when Hadley was involved in her own play, forcing myself to sit back and watch instead of inserting myself into her games.

Now, watching my 4 year old twins develop and explore their language, I'm reminded of Lea's advice to take a step back and observe. Conor and Brady have a rich vocabulary, but their articulation needs work. They've both been evaluated and both are developmentally on target, they simply need more time. I repeat their words, modeling the proper pronunciation. We play sound games to help correct their speech. But I resist the temptation to jump in and disrupt their play, especially in the middle of their elaborate role playing and fantasy games.

Conor, especially, loves to make up stories when he draws. He spends long periods of time with one piece of paper, coloring with markers, crayons, pencils. He talks the whole time. By the end of each day, the floor under the art table is covered with paper scraps. They all look pretty much the same:

Without seeing him in action, you'd think these are simply scribbles. You might comment on the waste of paper, the clean up, the marker on the floor, the broken crayons littering the table. But each and every one is a complex story, all of his own invention. This morning, I wrote down his words as he drew this:

"Fire, fire! There's a fire! Call 9-1-1! The firefighters race to the building. We need trucks! Get hoses! A firefighter rushes to the scene. Emergency! Here's a fire chief. We need a ladder! Get the aerial ladder! It goes up and up and up to get the people. Hey! They are stuck on the roof. Get the helicopter to come and get them. Whirrrrrrrrr. Now they are gone. Water! Water! Whoosh, whoosh. The fire is out."

His words are proof that he retains stories that we read out loud together, the facts he has learned from books, the images that accompany the action. It's all there in his memory, and he's taking all that knowledge and making it his own, both on paper and with his voice. Sure, I could sit with him and draw a decent fire station, truck, burning building and rescue workers, something that we could later hang on the fridge and admire, but the dialogue wouldn't come close to what Conor accomplishes alone.

Kids need the space and time to talk it out, to link words and ideas together, to practice all those ideas they've overheard. Conor and I can sit down at any other time and spell his name, practice writing letters, color in pictures...but nothing is better than letting him loose with $5 worth of paper and art supplies.

When it pays to be an AVT kid

2011-01-22T08:46:00.002-05:00

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.

F-U-N-D

2011-01-14T16:39:00.003-05:00

"Mom, I know some really bad words...but I don't use them."

"There are some different bad words out there. It's good to know them, and know not to use them. What are some that you've heard?"

"This one is so bad, I can't even say it. I'll spell it." (hides head under covers) "f-u..."

("Oh, I guess she does know this one", I think to myself).

"n-d!"

("Hmmm...guess she doesn't!").

It takes a hearing loss to turn a simple rite of passage, like learning swear words, into a lesson in listening and speech discrimination! Hadley is still such an innocent that the worst words we hear in our house are along the lines of "stupid" and "meanie". Up until now, she's typically learned bad words through books ("Damminit!" she muttered one day as she hit her head while getting in the car. "What word was that, Hadley?" "Harry Potter said it."). Our conversations have focused more on being appropriate and proper pronunciation ("The /n/ in 'damn' is silent, Hadley.") But "f-u-n-d"... this one required some further investigation.

I'm still not exactly sure what transpired, but it appears a friend shared the word with Hadley in a typical "what swears do you know?" conversation. Hadley couldn't hear her friend very well (this happened at lunch), and was relying on contextual clues to fill in the gaps. She heard the first sound of the word, flipped through her internal file of known vocabulary, and decided that 'fund' was the swear. She didn't want to risk asking her friend to repeat the word, in fear of being overheard by an adult (so she had heard enough of the conversation to infer that this conversation was headed into dangerous territory). I'm still not entirely convinced the friend herself knew the actual swear, but I gathered enough information to determine that Hadley used the skills she had to the best of her ability to follow along...and yes, to even contribute another word to their lesson in profanity. (Which she knew! Correctly!).

Hadley now knows that the F-bomb isn't a trust fund or mutual fund. Maybe her hearing misled her, perhaps her friend did think that "FUND!!" is what people yell out in anger or exasperation, and possibly it's a combination of the two. At least she won't be telling anyone to "fund off" or "shut the fund up"...whether that way or in its proper form. And I've suggested that the next time she wants to sit down and have a nice chat about all the more colorful words in the English language, she do so off of school property.

A new 'do!

2011-01-07T17:22:00.006-05:00

Girls these days have a new rite of passage: making a donation of hair for use in wigs. It seems like every month, there's a new friend who is sporting a short hair cut. Hadley deliberated for months and finally made the decision this week to cut it off. Two years of growing ended in seconds as the nearly foot-long ponytail was cut. Hadley decided to donate her hair to Locks of Love, a non-profit organization that provides free and reduced cost hairpieces to children with longterm hair loss, especially alopecia. Her donation is being sent in recognition of a family member with alopecia.

Way to go, Hadley!

The balancing act

2011-01-07T11:48:00.003-05:00

There's no getting around it: living life with a hearing loss wears you out. It takes extra energy and effort to process complex language, identify the important sounds over the background babble, and fill in any gaps with contextual or visual clues. Despite the fact that this is the only life Hadley knows, it's still draining: even a long distance runner is exhausted at the end of a long run. There's only so much endurance a person can build.

A challenge is balancing Hadley's energy level with the abundance of activities that are available to kids her age. I am a firm believer in participating in sports and other popular activities when they are new to everyone, and Hadley loves trying out new programs (with a healthy amount of apprehension). Problem is, there are dozens from which to choose! Every few months, we contemplate new activities and weigh them against those she already enjoys or does with friends. It's the normal juggling act all parents do (When will homework be completed? What days are free? Who will drive? How much does it cost? What has to give?), but with the added complication of factoring in Hadley's endurance and energy. I know that if Hadley has a team sport one day, she needs to have the next day be very low key. I've learned that "quiet" activities, like art class, can be scheduled anytime during the week. I've realized that programs that require active listening are best done on Mondays, when she is most rested. Piano lessons are best early in the morning, but the special relationship she has with her teacher is so important that we squeeze in this time as we can. Above all, by 5PM, Hadley's energy is pretty much depleted, having put in a nearly 11-hour day by then. While Hadley's endurance improves as she grows older and develops the skills and strength to manage her day, the expectations rise as well: homework increases; language is more complex; teaching and learning is more auditory-based. What works for her now may not be the case next year. Just when I think we've discovered the best school-activity-life balance, her needs change.

So, the balancing act continues. This winter, Hadley asked to try some new after-school activities, and we agreed to add one film-making class. We're testing out her ability to do something later in the day with ice skating lessons. The next six weeks will be a little busier than usual for her, so we'll see how it goes and adjust as necessary.

Preparing to be left behind

2011-01-05T15:30:00.003-05:00

Of all the things we prepare ourselves for (ear infections; technology failure; further hearing loss), the one thing that can suddenly surprise a family is when a member of the support team leaves. It can take a long time to build these relationships and trust professionals, for both the parents and children. Once that trust is in place, it's hard to imagine not relying on the team-- harder still to convince yourself that the same level of confidence can exist with someone else.

Over the last nine years, we've had people come and go from Hadley's team due to job change, relocation, medical leave, sabbatical and retirement. In most cases, we've had plenty of advance notice to make our plans and have transitioned pretty seamlessly. We've been fortunate to expand the team to include some really great professionals who have only improved the level of service to Hadley. Here's what has worked for us:

1. We have always worked with professionals who focus on pediatrics within a larger practice that has a commitment to pediatrics. When people have left for other jobs, the practice has hired new professionals with a similar level of knowledge about serving children.

2. We always ask the question, "If we can't see you, who do you recommend in your absence?". A regular audiologist or ENT isn't always available for last minute appointments, so it's always good to have a relationship with someone else in the office. When a leave has been announced, we've always had a fall back person already in place.

3. All good therapies should come to an end. As much as we loved the regular weekly contact with Hadley's cert AVT, we knew the goal was to complete regular sessions by the time Hadley entered kindergarten. Lea and Jim's sabbatical year to improve AVT services in Australia was the perfect push out of the nest for us, cushioned by monthly sessions with their mentee, Carrie.

4. Change is good! As a toddler, Hadley had developed a few behaviors in reaction to some routine examinations. Having someone new took her mind off her fears and helped her overcome her concerns over some of the more uncomfortable procedures.

5. If you aren't feeling comfortable with a new person, start asking around. It's not always worth going to the closest office if you don't trust the professionals there. Sometimes it's better to drive the extra miles to someone you respect rather than stick with someone you endure.

6. Speak up! We're ingrained to not ask personal questions, but sometimes you have to be direct in order to make proactive decisions. How long will the maternity leave be? Is the person returning to a full or reduced schedule? Hopefully, you've developed a good relationship with this person and can ask without being pushy or intrusive...but ask, regardless.

As parents, we're acutely aware of how hard it is to find professionals who are right for our children and circumstances. Our kids just want to feel comfortable at all these office visits, and the personality that works best for them may be different than what works for us. While Hadley agrees with our choices so far, I'm becoming more aware that she feels safer and more confident with some professionals more than others. These are all factors that will become even more important the next time we're jostled out of our happy support team and forced to reassess those upon whom we all rely.

Doing what's best for...

2010-12-27T20:50:00.000-05:00

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.

Happy Holidays!

2010-12-22T08:12:00.000-05:00

...and Happy New Year to everyone! Thanks for reading our blog!

Stirling Snowman Christmas

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Telephone Time

2010-12-09T10:43:00.009-05:00

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

2010-12-08T13:11:00.005-05:00

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?

Piano Concert

2010-12-05T21:15:00.007-05:00

So many people (professionals included) think that a hearing loss prevents a person from enjoying music, let alone playing an instrument. Music has been a big part of Hadley's life from day one; taking her to music classes, joining a children's chorus, and practicing the piano are just natural extensions of her interest in music. The fact that music helped develop her auditory skills is just gravy.

Every year, Hadley performs at the Cranberry Hospice Festival of Trees. This past weekend, she performed two pieces on the piano, including the Skater's Waltz with another student. I've edited this video, as it involves another child, but Hadley is the student wearing the white shirt, playing the melody. Playing this duet was a challenge. Hadley received the music just last month and only started playing with her partner a week or so ago. They played without listening to each other and just raced to the end of the piece, losing the rhythm almost immediately. No matter what the teacher did, Hadley couldn't connect what she was playing to the accompaniment. I was beginning to think this was out of reach for her, right now (Hadley spends more time brushing her teeth than she does practicing the piano!).

Just a few hours before the concert, Hadley asked me to practice with her. We broke it down, section by section. We played it through, over and over, for about ten minutes. We were never perfect, but definitely improved enough so Hadley could hear how the two parts worked together. At the very least, I thought, Hadley was more confident. That could only help things.

Since this is not a made-for-tv movie, Hadley and her friend did not nail the piece. They kept it together until the final tricky part, but got through to the end. What I loved was how the two of them were visually checking in with each other (it might not be as apparent with the editing) as well as listening to attempt to correct themselves at the end. Fingers were flying, nerves jangling, but both girls used their own hearing to make music together.

Support John Tracy Clinic's Quest for 250K

2010-12-03T10:01:00.003-05:00

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.

Calling for Backup

2010-11-30T21:36:00.002-05:00

It's always important to have people to fall back upon in emergencies. It's even more critical when you have a child with additional needs. When Hadley was a baby, I wanted to make sure that anyone staying alone with her knew how to insert the hearing aids and do some basic troubleshooting, like change a battery. If a person was hesitant to learn these things, it was a good indicator that I should leave Hadley alone with someone else.

Hadley's much more independent with her hearing aids, and my focus has turned more toward finding people who can handle the challenge of active twins. Last weekend, however, was a huge reminder of how important it is to have a strong contingency plan in place.

My husband became very ill, very suddenly the weekend before Thanksgiving, requiring a trip to the hospital. What began as a simple trip to the ER became a three day hospital stay, resulting in a call for backup help with the kids. We're fortunate (spoiled) to have frequent contact with my family who live just a few minutes away, and the kids were happy as clams with their extended sleepover. I was able to just focus on my microworld at the hospital, Dan focused on recovering, and the kids just did their thing. It went so well, my guys are now hoping another hospitalization is necessary so they get another three night sleepover!

While this was an extreme experience that hopefully won't occur again anytime soon, it was a reminder how important it is to have a "what-if" plan in place...and doubly important when your family is a little more complicated than the norm. This week has been a return to our regular routine: regular, boring old life is pretty good!

The Wheels on the Bus...

2010-11-19T07:33:00.000-05:00

Regardless of progress or experience, one issue seems to always remain for parents of hard-of hearing children: determining whether a problem is due to the child or the hearing status. It's a bit of a chicken-or-the-egg dilemma. Is Sam not pronouncing the /s/ sound because he can't hear it or because there's an articulation problem? Is Cindy afraid of fire drills because of the loud sounds or a fear about her safety? Does Kim stand around on the soccer field because she can't hear the coach's instructions or because she's simply bored of playing soccer?

Most of the time, the cause has little to do with the ultimate solution and you can respond to the whole child, not just the hearing loss. I remember that, but then every once in a while, I'll completely jump the gun.

Hadley has a new school bus driver this year, a great person who is on top of everything that happens on the ride. I've had no concerns about Hadley and her time on the bus, until I recently noticed that she was taking forever to find a seat in the morning. As one of the last kids to board the bus, it can be a challenge to find a seat, but this was becoming agonizingly long (especially to the drivers in the cars behind the bus). I noticed she was often walking back to the driver to ask for assistance. I couldn't figure out what was the problem. Was she avoiding sitting next to older kids, or someone in particular? Trying to sit in a certain section to hear the driver? Could she hear the kids who were telling her where to sit? I could only figure out so much from my view from the driveway, but I was convinced this problem was due to her hearing.

While we're really trying to let Hadley fend for herself, I decided that it was time to intervene. In anticipation, I prepped myself with some possible solutions for Hadley. Turns out that all my guesses were wrong. Hadley has a friend who joined their bus route this year and is the final stop on the morning pick up. They like to sit together, so Hadley has been searching for a completely empty seat. It took a few weeks, but kids who used to sit by themselves now sit together to leave an empty spot for Hadley to grab. An Olympic sprinter couldn't get to the seat faster than Hadley does now!

Perhaps now I'll learn not to lose sleep preparing to solve a problem that doesn't even exist. It's not always about her ears...

Of all the things...

2010-11-11T22:20:00.003-05:00

First off, thanks for all the emails and messages this week! It really cheered Hadley up to know that people were reading and thinking of her.

After a second consult with Hadley's ENT, we left wondering whether Hadley had an about-to-emerge ear infection or TMJ in her right ear. It was too close to call, so we opted to keep a close eye on the affected ear, continue with ibuprofen, restrict Hadley to soft foods, and follow up with a dentist. By Wednesday night, Hadley was able to insert her hearing aid into her right ear (first time in three days).

It just so happened that Hadley had a dentist's appointment already scheduled for today, where the dentist agreed that Hadley had TMJ. While it's a relief to have a firm diagnosis in hand, it's still a surprise that this severe ear pain has nothing to do with her ear! I understand the physiology, but it's still amazing to think that it just takes a tiny bit of swelling to make it impossible for Hadley to insert her hearing aid into her ear. Hadley now knows to be cautious about opening her mouth widely (when, for instance, yelling at her brothers), is avoiding gum, and already received some suggestions for mouth exercises from her music teacher. She'll be seeing an orthodontist soon to see what might plans might be in her future.

It's been a long, exhausting week for Hadley as she battled an infection in one ear and unknown pain in the other. While it's temporary and certainly not life-threatening, a friend reminded me that it's okay not to minimize this to others. Yes, Hadley will get through this and will return to (her version of) normal, but it's still been a challenging week...for all of us. For two days, she didn't hear...and she made the best of it. She relies on her hearing just like any other "typical" person. I'd be tired, cranky and confused, too, if I suddenly lost my ability to hear (add -ier to all of that; Hadley made this week look easy in comparison). We're all looking forward to a return to life as usual, with perhaps a better appreciation for how hard Hadley works every day to keep up in a hearing, listening world.

Living without Listening

2010-11-09T06:11:00.006-05:00

The good news is that only one of Hadley's ears is infected. We're back on track with the drops her ENT wants (over-the-counter clotrimazole; quite different than what the pediatrician's office recommends), and Hadley should have a healthy ear in a few days. The better news is that Hadley's other ear just needed to be cleaned (even though it was just done six weeks ago). The bad news is that her healthy ear is still sore from the debris. She couldn't tolerate her hearing aid yesterday, and today is just the same.

I'm trying to remember the last time Hadley was without both hearing aids for an extended period and the answer, I think , is never. This is a hearing, listening, speaking kid; she doesn't like to miss anything. The last day has been challenging and exhausting for her. Although she is an excellent (self taught) lip reader, it's tiring and she expends a lot of energy in the process. She crawled into bed early last night and was asleep within minutes.

Hadley woke up disappointed this morning that her ear still hurt so much (I took a peek with my otoscope; it appears that the skin is a little irritated from the wax that was removed yesterday). She misses her friends. She's annoyed that she completed two school projects early and now is absent on the day they are due ("They're going to think I stayed home because they weren't finished!"). She's bummed that our downstairs television doesn't have captioning that works, but doesn't want to go upstairs away from people.

Surprisingly, there hasn't been a single complaint yet this morning. Hadley's doing the best she can while we wait for the ENT office to open. While I'm not certain there's anything we can do other than give her ears some time to heal, it's worth a co-pay to have that confirmed by someone who actually went to medical school. (This is definitely one of those times when I wished Dan and I had made different grad school choices!)

In the meantime, we'll stock up on library books and do some math. You don't need optimal hearing to practice math facts!

There's a Fungus Among Us

2010-11-08T06:32:00.004-05:00

Will she ever get a break? Hadley wages an ongoing battle with otitis externa. She gets swimmer's ear just from taking a shower. (I exaggerate...but that's what it seems.) She dries her ears carefully after baths and showers, typically taken at night so she can leave her aids out and go straight to bed. Her ears are cleaned regularly by her ENT to avoid wax buildup (that can trap moisture in the ear canal). We've done vinegar solutions (approved by her ENT) as a preventative measure.

Regardless, Hadley is now experiencing her fourth or fifth fungal infection of the year. (I'm placing my money on last week's humidity as the most recent cause). She complained of the familiar aches, itchiness and swelling in one ear, and was seen by her pediatrician a few days ago, confirming what we suspected. She's been using ear drops ever since, forgoing the aid in that ear, and feeling better. Last night, she felt it starting in her other ear and woke up feeling worse.

Hadley's never had both ears affected at the same time, so being without both aids is a new twist. I'm readying my fingers to call the ENT as soon as the office opens to get her on today's schedule. While I know that one ear is on the mend and the other soon will be, I'm beyond frustrated that this continues to occur. By contrast, Hadley's a trouper. Not only is she enduring the pain and discomfort, but she hasn't complained about missing activities or going without her hearing aids. (It helped that she just happened to learn about a cyber friend's son and his frustrating obstacles with his cochlear implants. She's old enough to understand the different layers of challenges all HOH kids face.) Her only comment so far has been, "Isn't it kind of funny how it started in one ear and went into the other? It's like the infection is playing hopscotch!" Oh, and to ask for hot chocolate at breakfast. She knows how to work the system!

Hopefully, we're an hour away from having a scheduled ENT appointment and just a day away from getting Hadley back on track. An extra special thank you will be given to the nurse who can find an appointment that doesn't conflict with preschool pick up or today's dentist appointment, and happens when it's not sleeting outside. If we can't get a permanent cure for fungus, can't we at least get convenience??

UPDATE: This is why families need to work so hard to find great professionals to help their kids. I called the ENT office just as it opened this morning. My wait--even on a Monday morning-- was less than one minute to talk to the front office. I explained the situation to the receptionist, got transferred immediately back to a nurse, and received an appointment for later this morning, with Hadley's actual ENT. We're on our way!

When adults say stupid (yes, stupid) things

2010-11-06T11:48:00.009-04:00

Having been acutely aware of each and every word Hadley heard and learned in her first five years, I'm very conscious of the words I choose to say around my kids. I choose my issues about a lot of things, but I'm a stickler for polite language. So, it was a bit of a shock for Hadley to hear me say to her the other day, "That was the stupidest thing I've ever heard an adult say ". And I meant every single word.

Hadley and I were out and about, just the two of us running some errands. A 65ish year old woman waited on us and, while staring at Hadley's hearing aids, stumbled for words. "Are those...is she wearing...?" I filled in, "Yes, those are her hearing aids." The woman looked directly at Hadley and commented on how fancy they were. So far, all normal. We have these kinds of conversations all the time with adults. Then she said the stupidest, dumbest thing an adult has ever said to Hadley:

"You don't really need them, right? They don't look real. Are they part of your Halloween costume?"

I really encourage Hadley to speak up and answer questions on her own, but this went beyond the call of duty. I assured the woman (well-intentioned, I know) that Hadley's hearing aids are real and that they make aids in cool and fun styles. Hadley was stunned into silence, trying to figure out how to respond to a smiling person who had just delivered a zinger (albeit, unintentional). She managed to quietly confirm that these were, in fact, her hearing aids and finished up the conversation. We scooted out the door, where I said my fateful words, "That was the stupidest thing I've ever heard an adult say", along with, "I'm proud of you. You taught her something today."

I know we all sometimes say things that come out the wrong way, especially when confronted with something we are trying to understand and figure out. Hadley was at first pretty sad about this encounter-- not in a dramatic "She said my aids were a Halloween costume!!! Can you believe it??!" kind of way, but a quiet, I'm-going-to-go-sit-quietly-by-myself manner. Hearing me use the word 'stupid' shook her out of it, and we spent a minute or two talking about how the woman didn't mean to hurt Hadley's feelings, that it was okay to feel sad about the encounter, and how Hadley had handled the situation well. She's brought it up a few times since, and the story is quickly becoming "The Time Mom Called a Woman Stupid" story that will end up in our annals of family history.

You know what? I'm completely okay with that.

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

2010-10-27T15:34:00.003-04:00

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!

2010-10-19T07:49:00.003-04:00

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

2010-09-07T21:42:00.002-04:00

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.

(Preschool) Lessons Learned

2010-08-25T10:47:00.002-04:00

This summer, my 3 1/2 year old twin boys did a three week session of preschool, a mini introduction of what to expect come September when they "officially" start. (If you ask them, they will tell you they are now on summer vacation. That's right, 21 hours of preschool has given them the right to be on break.) We've opted to send them to our town's intergrated preschool as model peers, both because of our own confidence in Hadley's integrated experience and because it's what Conor and Brady selected. I was looking forward to the practice, not out of concern for their transition but rather to help me improve on getting three kids ready and out of the door on time!

While this particular integrated preschool is new to me (Hadley went to preschool in our old town), it's located in the same building where Hadley did K-2, so it's familiar territory to all of us. Conor and Brady got off without a hitch. I'm always on hyper alert when I'm out with my sons for security's sake, so I usually don't have a moment to talk to the other adults. After the first week or so, we were into the routine and I could stand down on my guard a (slight) bit. When I used to wait for Hadley at preschool, I'd join in on conversations about therapies or juggling doctor's appointments: the general topics of raising a child with different needs. This time around, as I looked around the clusters of parents, I realized that, to them, I'm not Hadley-the-girl-with-hearing-aids' mom. None of them know that I've lived through this before with an identified child. The point was really hammered home when one of the teachers very nicely offered to tell me a little more about integrated education and the general needs of some of the kids. For a split second, I kind of felt that the badge I've earned with the years of services with Hadley had been stripped away. I know about this! Really, I know!

So, off we start on the preschool journey for two typically developing boys. It's strange not to be thinking about team meetings or accommodations, prepping the staff on equipment, or evaluating the classroom for any challenges to a good listening environment. And, even though I'm doing it with two kids instead of one (and at the risk of jinxing myself), I'll say it: this is a piece of cake. I keep double checking to see if I've forgotten something, because this is all too easy. You mean all I have to do is send them in with a snack and pick them up on time? With pleasure!

Third grade starts for Hadley next week. She has her teacher assignment, the sound field system is in place in the classroom, and her backpack is already stocked with hearing aid tools and supplies. Conor and Brady start preschool in two weeks. They have their backpacks, snack bags, and extra bag of clothes. Bring on September!

They're Not YOUR Friends!

2010-08-17T08:45:00.001-04:00

Here's the catch: You meet the professionals. They are, in all sense of the word, professional. They are the lifelines to your goal. It doesn't matter their role, their age, their gender: you will do whatever they say in order to get what your child deserves (after researching the advice to the nth degree, until you trust their knowledge). Some will have a front desk staff. You will kill them with kindness, because you need these people on your side: to get faster appointments, receive calls about cancellations, be squeezed into the calendar at the last minute. Your notes have little comments in the margins, marking children's names, spouses, any personal information. You are pretty much willing to exploit any possible connection you might have to, again, get what your child deserves.

Then, suddenly, you realize that you actually like these people! You are no longer being friendly just to win them over, it's because they are really nice people.

We have an amazing group of professionals who truly care for Hadley. We lost the dead weight early on and built up a team of people who want-- in fact, insist upon-- nothing short of the best for her. Along the way, we have relied heavily on their expertise and advice as we made tough choices for Hadley's future. In the nearly nine years we have been on this expedition, I have come to know everyone very well, trading stories between ear mold fittings, sound booth visits, ear examinations, scheduling appointments and therapy activities.

One problem, though: I'm not the patient.

In the past year, Hadley has made it very clear that her medical appointments are about HER, not me, and I should keep the chit chat to a minimum. She's exactly right, but it's hard to break old habits. Plus, I like these people! Sure, we don't make plans to get together (or, at least, not all of the time), but they all know that if they ever need a hand, we'd offer a dozen.

However, these are her appointments and not my social calendar, so I've made a concerted effort to let her run the show, add her input, and minimize my mouth until she has had her say. Some days she asks that I stay in the waiting room (okay at the audiologist's office if it's a routine visit, not okay at the ENT where she'd be waiting alone in the exam room). Sometimes she even beats me to the punch and makes inquiries about the new baby or house or recent vacation.

After all, she now knows these folks as well as I do, too.

Demo Days, Take Two

2010-08-16T10:03:00.000-04:00

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

2010-08-09T07:19:00.001-04:00

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!"

2010-07-25T22:09:00.000-04:00

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

2010-07-11T17:51:00.005-04:00

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...

Wordless Books: The Hows and Whys

2010-07-07T11:52:00.003-04:00

While waiting for my kids at the library, I heard an adult ask a 2-3 year old to pick out a book to check out. When the boy handed her his choice, she glanced through it and said, "This book doesn't have any words. Pick out a better one-- we can't read this!".

Uh-oh.

Granted, it takes a little bit more effort to read a wordless book to a child. We've all gone on autopilot before, reading the words and turning the pages, but completely tuning out. (I'll slowly raise my hand to admit that I have fallen asleep while reading to a child.) But once a child knows how to read a book without words, the story can expand and change in countless ways. Those same pages turn into hundreds of different plots that evolve as the child gets older. If you do it right, you might even find your child spending 10, 20, 30 or more minutes alone with a wordless book.

Nearly all wordless or almost-wordless books tell a basic story, which is easily inferred from the pictures. Keep it simple at first but, with a child who is expanding expressive language, you can take off. Use the illustrations to expand the plot, ask questions, develop dialogue, or follow a specific character. Take turns discussing what happens next. If your child is reluctant to expand the story, consider modeling how the story can change each time you read it...or just move on to a different wordless book.

Some titles that we have loved include:
Hug, by Jez Alborough
Tuesday by David Wiesner
You Can't Take a Balloon into the Metropolitan Museum, by Jacqueline Preiss Weitzman and Robin Preiss Glasser
Clementina's Cactus, by Ezra Jack Keats

Although Richard Scarry books have some text, most kids seem to focus on the illustrations only and explore all possible plots. A more recent discovery for us has been In the Town All Year 'Round, by Rotraut Susanne Berner.

Not just for preschoolers, wordless books can also be a great way to encourage an older child to practice some creative writing. You can even make your own, or suggest that your child do so.

For more ideas on how to share wordless books with kids or other titles, here are a few more resources:
"Wonderful Wordless Picture Books"
"Talking about Wordless Picture Books"
Reading is Fundamental List

Pool Time, Part 2

2010-07-01T13:05:00.004-04:00

Just when you think you've got it all figured out...

Hadley's summer of swimming has gone great in this first week, but there's always bound to be a hitch when you least expect it. Hadley and her cousins were swimming at a family party a few nights ago, and all was going well: her aids were out, but Hadley was able to lip read and modulate her voice just fine. She's able to swim well enough that I could relax (somewhat) and talk with my family while I kept an eye on her. All was great...until it became dark, too dark to see faces to lip read. Night time swimming is a new thing for us! I took Hadley out of the pool so we could decide what to do. She really wanted to get back in the water, so we agreed that I would sit near a tiki torch so she could see my face. By now the darkness and bugs had driven most of my relatives inside, but a few of the bravest kept me company for another hour. Other than trying to get her attention in the dark (a noodle to the head worked well), things were fine. While I don't expect nighttime swims to be a common thing for us this summer, I might have to add a flashlight and bug spray to our car bag!

Pool Time!

2010-06-28T14:56:00.004-04:00

Summer is here and we are back in daily swimming lessons. Hadley's lesson takes place during open swim, so a portion of the pool is closed off for lessons while the rest is open for pool fun. This would not have worked for us when Hadley was younger-- far too many distractions-- but it's fine now. In fact, it's pretty nice because Hadley can arrive early for lessons, swim a bit, then get a little more practice in afterward.

After her last lesson, Hadley realized that some girls she knew were in the pool and went over to join them. Her waterproof hearing aids were long gone (they don't last after constant submersion), and I wondered how she was going to handle communicating, especially since these were not girls who knew Hadley extremely well. I chatted with the mom and stayed close by the pool but, in the 30 minutes they swam together, Hadley never once needed my intervention. Hadley organized most of the games, which allowed her to always know what was going on. Since there were only two other girls, Hadley was able to pretty quickly figure out who was talking. Hadley even modulated her voice, so she was neither talking too loudly nor softly. It was all just right.

Later on that night, when I was saying goodnight to Hadley, she said to me, "Isn't it great that I can do normal things, like playing in the pool with my friends?" While I'd like to think that Hadley is nonplussed by the differences in her life versus her friends, it's also great to know that she's as aware and thrilled with her accomplishments as we are.

Ars gratia artis...and more

2010-06-18T21:43:00.008-04:00

When you read dozens of good picture books a day to your child, you can't help but instill an interest in art as you advance their listening and comprehension skills. Like most kids, Hadley loves to draw, paint, cut, glue, sew, tape, and create art. As a preschool and kindergarten student, she took a few art workshops and classes that provided kids a fun space to paint, color and draw. She most enjoyed the process of making something, not really caring about the final product (the "Look how much paint I have on me! You should have seen the mess we made!" phase). It was simply fun.

Then Hadley became frustrated: her horses didn't look on paper the way they looked in her mind, the faces were uneven, she couldn't make things right. She didn't buy the line "there are no mistakes in art!", or even "just paint over it". Since I was looking around for an activity that was both calm and done in a group, I checked out the art options. We're fortunate to have a number of choices in our small town, including a local artist whom I've known about for years. I enrolled Hadley last summer (at age 7 1/2).

At first, I really thought that the benefit of this weekly class would be the guidance in art that would help ease Hadley's frustrations. Hadley knew a few kids in the class, so it was a nice way to see some friends over the summer in a quieter, more structured way than what she got on a playdate, on the playground or in a sport. After a few weeks, I noticed another benefit: Hadley was always calm and peaceful leaving the studio. It didn't matter what her mood was when she entered or how she felt about the work she had done, she just was always peaceful (and stayed that way for a while). As Hadley developed more confidence in her art work, she could spend time drawing at home as a way to calm her down. Living with a hearing loss is tiring, and sometimes she just needs to get away from the world. Creating something, whether it's drawing a picture, coloring a mandala, cutting out clothes for paper dolls...they all give her the opportunity to just get into herself for a little bit, and away from the chaos at hand (even if she's still physically in the middle of it). I joke that the cost of each art class is awash with an insurance copay for therapy-- with the added bonus that we have pictures to hang on the walls.

It's now been a full year of weekly art classes for Hadley, and she's excited for the summer session to start next week. Regardless of what she does with art in the future, she has a really strong understanding of how she can calm herself or regain some energy by spending some time with art.

(Of course, I have a sneaking suspicion that this is one activity she'll hang on to for a while: she's caught the bug for entering contests and art shows. Tonight, she received an award in her age group at the South Shore Art Center Arts Festival. If you're local, go check her work out in the kids' tent this weekend!).

Prepping for Water Fun

2010-06-18T09:52:00.009-04:00

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.

The Feelings Book

2010-06-11T22:55:00.009-04:00

Experience books played an enormous part in Hadley's early language development. As learning language concepts came more readily to her, we eased off on the daily entries, then left them behind entirely. When my sons were born (both hearing), I had a moment of guilt that I was not creating these masterpieces for them...then I got over it and got back into parenting a set of twins (which has its own set of obstacles and complications).

My kids are the ones that made me return to a kind of experience book...taking a favorite published book and recreating it with your own family. When my boys were 18 months old, they were obsessed with Todd Parr books, especially "The Feelings Book" . Hadley, then 6 1/2 years old, had a renewed interest in experience books and wanted to make her own. We spent an hour going through pictures, thinking of similarities between our family life and the themes from the book, and pretty soon had a final product .
Two years later, the kids still love to read their version, talking about what they see, remembering when they were little...in short, producing rich language connections. It's just as necessary for hearing kids as it is for those who hear with some extra technology behind their ears.

Dr Mom Otoscopes

2010-06-06T16:52:00.007-04:00

A down side to hearing aids is that the ears are blocked up for a significant portion of every day. Not only does ear wax accumulate, but the lack of constant air circulation can contribute to ear infections similar to swimmer's ear. As Hadley has taken over more of the daily care of her ears, doing a better job some days than others, she's developed more of these infections.

Last year I bought an otoscope to use at home. After years of audiologists letting me take a peek inside Hadley's ears, I thought it might be useful to have one to keep handy. After a little research, I purchased a Dr Mom otoscope from Amazon. Following their instructions, I regularly looked at Hadley's ears in order to get a sense of what her healthy ear drums looked like. What a difference it makes to have a scope at home! This has become especially helpful when Hadley complains of ear pain and I can let her know if it's soreness from a scratch or the beginnings of an infection. Not that we could ever skip a trip to the doctor, but Hadley feels better once she knows what she is dealing with. Last week, I knew immediately that what I saw in her ear was otitis externa, which made the trip to the doctor's office extra speedy.

Yesterday, Hadley asked me to look in her ear to see if all the ear yuck (that's a technical term) was gone. Unfortunately, our trusty otoscope wasn't working, even after changing the batteries. The box mentioned a lifetime warranty, so I emailed the company. Despite it being a Saturday, I received a response within a few hours. After confirming that the scope had, indeed, malfunctioned, replacement parts were on their way. The scope should be up and working again by the end of the week. If you've ever considered having an otoscope at home, go check it out.

Music & Light Bulbs

2010-06-05T10:12:00.000-04:00

Using music to promote Hadley's early language development was a success, but I haven't thought of music lately as a tool, just another activity that she enjoys. In the last few months, Sarah, her music teacher (who has worked with her since age one), has repeatedly talked about how important it is to keep her singing. Hadley wasn't able to do the children's chorus this spring due to a scheduling conflict, but has continued her weekly piano lessons with Sarah. Each week that I see Sarah, she at some point tells me, "Hadley must keep singing!". I agree with her, hustle the kids back in the car, and life goes on.

Only this week did her message really sink in.

Hadley does not really practice (and I choose not to force it, despite having forced myself to practice long and often while I was a violinist), and her progress on the piano is slow. We have a keyboard at home that we moved into her bedroom, so she would not be bothered by her younger brothers when she practiced. I thought the privacy would increase her practice time and perhaps motivate her to do so more regularly. More often than not, however, she messes around on the keyboard and just has fun with it. There is no formal practice and, since she's upstairs in her bedroom, I can't sit with her and help her review the weekly work (unless I want two three-year old boys to have full run of the rest of the house).

For some unknown reason, this week Hadley chose to practice her actual piano work. I've listened to her play (and improve). I've also heard her sing the words to the songs while she plays (something that Sarah has recently required her to do). She can sing a song in tune on its own. She can play the piece on the piano in tempo. She can't do them together at the same time. Finally, that light bulb went off over my head. Sarah hasn't been telling me to keep her singing just to get her back in class. Sarah knew well before me that Hadley needs to keep singing because she can't process the sound of the instrument and modulate her own voice at the same time.

My music teaching friends will remind me that this is a skill that all music students need to develop...but this goes beyond the norm and clearly is something that is impacted by her hearing loss. Hadley has been taught to focus on the source of sound, to tune out background chatter, so she can identify and interpret speech. Right now, when Hadley hears the piano and her own singing voice, her brain responds as if listening to two people talk at the same time. Her singing voice is usually just above or below the piano note; close, but not quite.

Since Hadley does have the basics of the skill, and the interest, I know it's something that can be improved if we focus on it this summer. If Hadley wants, I know it's a skill that she can fully develop...but only if she keeps on singing.

Memorial Day Parade

2010-05-31T18:30:00.006-04:00

Hadley and her fabulous Girl Scout troop marched in our town's Memorial Day parade this morning. This is the third year that Hadley has participated, so she knows the drill. Today was complicated by the fact that she has an infection in one ear, preventing her from wearing that hearing aid. She assured me, however, that it just made things easier when the honor guard did the gun salute, as she'd only have to turn off one hearing aid instead of two. I had to laugh at myself when I alerted her to turn her aid back on so she could hear Taps being played. It's not a new experience for her, it's something that she's bound to repeat several more times in her future, her hearing was already further compromised today...but alerting her to special and important sounds is so automatic for us, I did it without thinking. Those principles of auditory-verbal therapy are firmly ingrained in all we do!

One aid or two, Hadley still had a great time marching with her friends. It's great to see her speak up when she needs something repeated and use her coping skills to figure out what has been said. However, it's a tough reminder to see how much harder she has to work with just one hearing aid and how much she does miss. As Hadley's friends get older and know her better, they are more capable of providing the extra support that she needs in these situations, something she relied on quite a bit today.

We don't have many pictures of Hadley where you can see her entire ear; it's very strange to see her without her colorful molds (currently green and white swirled) and purple hearing aids. Hopefully, she'll be sporting two aids in the next day or two!

Reading "Never Ask a Bear"

2010-05-29T18:37:00.005-04:00

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!

Sticks and Stones

2010-05-24T13:26:00.002-04:00

It was bound to happen at some point, but this has been the year of the put down. Welcome to second grade! Hadley is a frequent reporter of other people's behavior, so I've heard who-has-said-what-to-whom throughout the year (interestingly enough, I have not been kept current on what-Hadley-says-to-whom, so I can either live in blissful ignorance or let my imagination soar). Hadley experienced her first put down of her hearing aids when one kid called her "Alien Head" (yes, to you ultra rad readers out there: I know the other meaning, and I can only hope that the 8 year old who said it does not. And, no, I'm not going to define it, but the helpful people at Urban Dictionary can do that for you).

After talking about the who-what-where-and-why's of the situation (classmate, while working on a team project, because they were arguing about which idea to use), we moved on to how this made her feel. Hadley sighed, rolled her eyes, and patiently explained to me that kids will tease other kids about anything and that if she didn't have hearing aids, she'd be teased about something else. (Hmm, looks like someone paid attention in those anti-bullying programs they ran at school this year. Or they covered this in an episode of Phineas and Ferb). And besides, the kid didn't know what he was talking about, since she needs hearing aids to hear. There was really no need for me to add my $.02 so, other than silently noting that something I had once worried about was a complete non-issue, we moved on from it.

With all of the spring sports going on, we've had loads of opportunities in the last month to see Hadley out and about with her peers. One of us made some comment to Hadley about how she knows a lot of the girls and that so many of them came over to say hello to her. She didn't roll her eyes this time but with a I-can't-believe-I-have-to-spell-this-out-out-for-you sigh said, "Everyone knows me. I'm the only girl with hearing aids in school. Of course they remember my name!"

"Confidence in self", checked off the list. Now just back to regular parenting, like making sure she's not the one doing the name calling.

Am I Hearing Now?

2010-05-21T08:14:00.001-04:00

Hadley has fallen into a new routine these last few months where she brings her hearing aids downstairs in the morning to put them in. She has her own system of checking them every day, a process that usually takes a minute or two. Lately, she's been the first of the kids to wake up and she's used this time to chat with me. Hadley is a great lip reader (self-taught; we never focused on developing this as a specific skill), and we can have a conversation surprisingly easily while her hearing aids are still out...if she is looking at me. The problem is that she'll look down to focus on her hearing aid while I'm answering her question. Then she'll become annoyed, thinking I ignored her. It goes something like this:

Hadley: (all sunshine) Good morning, Mom!
Kerry: (equally sunny) Hi, Hadley!
H: So, what's the weather going to be like? (drops head to open kitchen drawer with hearing aid supplies)
K: Warm, you can wear shorts today.
H: (looks up) Mom, I said, "So what's the weather going to be like today?"
K: Warm, you can wear shorts today.
H: (sunny again) Yay! Should I wear my pink shorts, purple shorts, or a skort? (looks back down)
K: You have gym today, wear shorts.
H: (looks up with great aggravation) Mom, aren't you going to tell me if I should wear shorts or a skort?
K: Shorts, you have gym today.
H: (with great hope) Is it warm enough to wear a tank top? (looks to side while she inserts first aid)
K: As long as you wear a sweatshirt to school.
H: (mild angst, still fiddling with aid) Mom, what do you think? Tank top? I asked you a question!
K: (breathes deeply, counts to 10) Sure, as long as you wear a sweatshirt.
H: (one aid now on, inserting second aid) Oh. Were you talking to me the whole time?
K: Yes.
H: Am I hearing now? (realization dawns) Oh, yes, I am!

Of all the questions we initially had about Hadley's future, I never quite imagined a scenario where she'd be so involved in communicating orally that she'd forget whether or not she was hearing...or that I'd someday hold her accountable for her tone of voice when she couldn't even hear it herself!

...and we're back!

2010-05-20T08:39:00.003-04:00

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!).

A Musical World

2009-12-06T17:27:00.013-05:00

By Hadley, star of Talking 24/7 *

I have always loved music, even when I was little. On Sunday, December 6, 2009, I went to a concert called the Festival of Trees. I went because I was going to sing, play the piano, and play the recorder. My dad filmed me playing the piano, and here is the film. You can watch it later, if you haven't seen it already. Read this first, though. I was playing "This Land is Your Land" and "Jolly Old Saint Nicholas". It was hard. I take lessons, though. Have fun watching!

Hadley, star of Talking 24/7

________________________________________________
Hadley came home from today's concert and immediately suggested writing about her performance for the blog. This is entirely her own work; I only uploaded the video for her. Today was Hadley's third time singing with Sarah Moran's Schola Cantorum at the Festival of Trees, but her first time performing on the piano and recorder. It was a busy hour for her!

I'm Gonna Eat on Thanksgiving Day

2009-11-23T11:01:00.000-05:00

I caught myself singing this song the other day to my almost three year old sons, and was thrilled to hear Hadley start singing it along with me from the other room. Laurie Berkner rocked our house for a few years, and now Hadley's passing it on to her brothers. Most of Hadley's favorite songs wound up as illustrations in Hadley's Experience Book or, as I did with this song, became mini-posters to hang around the house using pictures from Microsoft's Clip Art Gallery. To add to your Thanksgiving music repertoire, here's Laurie Berkner's "I'm Gonna Eat on Thanksgiving Day", sung by Hadley, age 8 (unintended back up music courtesy of her brothers).

When Silence is NOT Golden

2009-10-15T09:18:00.002-04:00

It's pretty simple: Hadley wears her hearing aids when she is awake and keeps them on all day. I disagree with the idea that kids need a complete break from their hearing aids; yes, listening and discriminating words is a tougher job for them, but there are alternatives to just turning off sound entirely. Hadley presents herself to the world as an oral communicator, no different than any other typical kid. She speaks, she responds, she hears, she listens, she discerns: to then have times during the day when she isn't expected to listen is contrary to all of this.

But I do recognize that listening and learning through hearing aids is exhausting. Just like any parent responds to their child's highs and lows, I make sure that I respect Hadley's need to sit and chill- especially after a full day at school or coming home from an activity. She'll curl up with a book, find a quieter corner of the house, play outside on the swing, or play in her room. Some days it's just for five minutes, some days longer. However, the hearing aids stay on. Whether conscious of it or not, she's learning how to find those quieter moments during the day when she rejuvenates, where she's tuning out the sounds of life-- but not turning them off. Suggesting that she just solve the problem by limiting her hearing denies her the opportunity to learn a life skill that most of us just acquire naturally (not to mention being a safety issue).

OK, so the hearing aids stay on all the time...what's my point? Last night, in a particularly chaotic moment when Hadley needed peace to complete her homework and her brothers wanted to do nothing other than sing and play their instruments, I shocked myself by thinking, "She could just turn off her aids for a few minutes of quiet." It would solve the problem, right? Her brothers could do their thing. She could finish her work. I could get ready to go out for my meeting without interruption. What harm could come from this?

I stopped myself though. Asking her to turn off her aids to get some peace solved my problem and, indirectly, hers. It made my life easier, as I didn't have to stop and figure out another solution. It might even make her life easier at the moment, because she could fly through the rest of her homework and have more free time. But my job isn't to always make her life easier, and no one benefits if I take the easy route myself.

The aids remained on. The jam session was postponed until later. Two 2 1/2 year old boys were redirected to another activity. I stopped looking at the clock and took a seat next to Hadley, who finished her homework without further interruption. Problem solved, hearing maintained.

"I don't have special needs!"

2009-10-01T21:19:00.002-04:00

That was the first thing I heard my daughter say to me this morning. This is the downside of having your child read over your shoulder while checking email. I recently signed up to receive newsletters from specialneedsparentscoach.com, after receiving a link to the site as a recommendation from another parenting group. Who doesn't need tips on how to better balance life, handle daily demands, or find time for yourself?

Well, apparently I don't. Hadley began to detail all the reasons why she doesn't have special needs (mind you, she wasn't even wearing her hearing aids at the time; she had literally rolled out of bed, grabbed them, and happened upon me before she put them in). She can talk. She can read. She can behave. She likes playing with friends. She was going down some internal list of special needs categories so fast that I couldn't get a word in edgewise. Finally, once she was calm and wearing her aids, I explained to her why I was interested in the website. (It might help me be a better parent to her and her brothers. It might help me create more time to do fun stuff. It might make me feel better that I'm doing the best that I can. It might give me good information to share with other parents.) What I actually said to her was I was curious to see what was on there. With that answer, she stopped reciting the medical list and moved on to more central matters (what was available for breakfast and were her brothers getting into any of her things).

This 60 second encounter kept me thinking all day. The term "special needs" isn't one that we use, but clearly one that is familiar to her...and she's formed her own opinion on it. I could tell her that, technically, she is not a child with special needs, since she's on a 504 Plan. I could go the other extreme and tell her that we all have different needs that are special. I could attempt to force a conversation about why she reacted the way she did...what she thinks of the term "special needs"...if she thinks she needs additional support because she lives with a hearing loss... The possibilities are endless.

Or, I could say nothing for now. Not everything Hadley says or does is about her hearing loss, even when it's as seemingly obvious as a hard-of-hearing child complaining about the label "special needs". I'll watch, I'll wait, and I'll listen. We might wind up having one of those conversations sometime soon. We might end up talking about being overly dramatic and making every single situation about herself (aka "the next ten years of her life"). As much as I may want some answers, this might be a time when I should not be the one asking questions.

(And, that website, specialneedsparentscoach.com? I didn't subscribe to the service, but I have read through some of the free materials. It's worth checking out, especially for parents who are early on in the journey and are still developing a support team for themselves).

Let's Go Crazy*

2009-09-29T15:01:00.004-04:00

I'm used to anticipating things that Hadley might miss. Night at the bowling alley? I'll volunteer to help, while watching to see if Hadley needs cues. Assembly at school? Preferential seating up front with a friend or two. Pool party? We'll chat about how to switch between her regular aids and water aids, and how to deal with any problems. Thinking ahead about hearing and listening challenges is second nature at this point, and we just figure out what needs to be adjusted. Sure, Hadley has a severe hearing loss, but she's living a typical life doing typical things with all of her senses.

Every once in a while, however, I'm absolutely floored by something that is so simple, so normal in a regular hearing life that she has missed. A few days ago, I was chatting with a neighbor, talking about the fantastic schoolbus driver that our daughters have. She just happened to mention how her daughter loves the music played on the bus and how she's learning the words to all of these songs. My mind just came to a halt: in over two years of riding on this bus, Hadley-- who loves music, loves to sing, and loves to memorize lyrics-- has never once talked about listening to the radio on the bus. Yes, I know, a school bus is a horrible listening environment for any kid, but wouldn't she have mentioned it at some point? She's jumped off the bus talking about a friend's recap of the latest Hannah Montana show, a joke that was told, who was told to sit down and behave, who has a new WebKinz...surely she would have mentioned a Taylor Swift song or two, right?

So I asked Hadley... a couple of times in different ways over a few days. Each time, the answer was basically the same: she can usually hear the kids next to her, she can hear if someone acts up, she can hear the bus driver call out instructions...but she can't hear the music well enough to make out the words. Since they are listening to Top 40 songs and not the alt kids music we tend to favor at home (ok, yes, music snob), nothing is familiar enough for her to recognize.

Hadley doesn't seem bothered by it (which explains why she's never mentioned anything at all). Truth be told, the music is only played on the 10 minute ride home; it's not a huge deal. But my very first reaction to this was thinking about how we used to beg our bus driver to play a certain radio station and the few minutes of fun we would have singing along until she'd reclaim the dial. At the end of a long school day, wouldn't you want to be in on the fun and not apart from it?

Living life with a hearing loss is all about making the adjustments and finding solutions. What's the challenge here? Hadley doesn't know these songs well enough to recognize them when played and can't hear them well enough to learn them from the bus ride. The simple solution is to learn them in a place where she can hear music well: our car, our house, her bedroom. She is capable of identifying songs she knows well, so she can choose to tune in and sing or tune out and talk. I just added a new station to my presets. We'll see how it goes-- for all of us!

* Let's Go Crazy, Prince & the Revolution: top US single on September 29, 1984

Quality of Life of D/HOH Children Study

2009-09-03T21:12:00.004-04:00

This email has been forwarded to me several times today from other parents of children with a hearing loss. I checked it out and decided to submit our information for consideration. To learn more and/or volunteer to participate, go to https://depts.washington.edu/projhql/index.htm

Project HQL
University of Washington
Box 359455
Seattle, WA 98195

Dear EAA Member,
On behalf of the University of Washington and the University of Colorado at Boulder, I´d like to invite you and your clinic or organization to spread the word to eligible families about our study, Quality of Life of Children and Youth who are Deaf or Hard-of-Hearing (Project HQL). We´re eager to find out how parents of children ages 5-10 and youth 11-18, who are deaf or hard-of-hearing, view their quality of life. The goal of our study is to create a quality of life questionnaire specific to these groups, which will inform service providers, advocates, and clinicians about the unique needs of this important group of children and youth. We´re currently recruiting parents of children 5-10 and youth who are 11-18 from across the country to validate our newly developed survey. As audiologists are instrumental service providers for children and youth who are deaf or hard-of-hearing, we need your help so the opinions of these children and youth are heard. We´re seeking participants with all degrees of hearing loss, educational placements and communication modes. While we continue general recruitment, we find that audiologists are vital for the recruitment of children and youth with mild hearing losses and cochlear implant users, making the cooperation of the audiology community crucial to our study´s success. I have provided a sample of the flyer for your reference. If you would like additional copies or information please contact us via email, phone, or visit our website to complete a request of information form:
Project HQL
https://depts.washington.edu/projhql/request_info/
projecthql@u.washington.edu
1-800-283-5827

We believe this study will provide important information to members of the deaf and hard-of-hearing community, professionals working within that community and our funding agency, the National Institute on Deafness and Other Communication Disorders at the National Institutes of Health. On behalf of the University of Washington and the University of Colorado at Boulder, I wish to express my deepest appreciation for your time and support.
Sincerely yours,
Melissa A. Garafalo, Au.D., CCC-A
Research Assistant
Quality of Life of Children and Youth who are Deaf and Hard of Hearing Project

Something Unique

2009-09-02T22:14:00.002-04:00

We're getting ready for tomorrow: the first full day of second grade! Hadley had a chance to visit her new classroom today and she was rather comforted by the fact that the room is her former kindergarten room. She also knows quite a few of her new classmates, so is looking forward to getting started. There's still some anxiety, but much more excitement.

One of the things the kids are asked to bring on the first day is something that showcases one of their unique characteristics. I was expecting anything other than the object Hadley chose: her hearing aids. She has never wanted to start the school year off by talking about her aids, but whether it was a result of yesterday's conversation or something else, she'll be bringing in the piece she wrote, "My Life", and plans to show off her new blue/green earmolds with gold glitter, her purple hearing aids, and her brand new earrings (because, after all, they are on her ears too!). She's all packed and ready to go!

School Time!

2009-09-01T08:05:00.003-04:00

It's a few days before the start of school and I'm in my annual back-to-school rush: restocking Hadley's backpack with hearing aid supplies; making copies of reports and articles to distribute to new staff; picking up brand new earmolds...if only it could be as easy as buying some new clothes and a few pencils

This is also the time for my annual angst over how much to share in advance with Hadley's teachers and new classmates. I have always maintained that teachers need to get to know Hadley first before I come flying in with audiograms and instructions on teaching HOH children. I don't want anyone to read about her and think about what limitations might exist; I'd much rather educate about how far she has come than have to convince anyone that we shouldn't expect the world from her. I have never started the school year by talking to her classmates about what her hearing aids do or answering their questions. That always felt like shining a spotlight on what makes her different instead of letting her flow in the mainstream. Instead, my focus has always been on making sure Hadley can answer questions on her own and can speak up for herself when necessary. So far, so good.

But, each year, some of my favorite parents in the AV world share what they do with their child's new classmates and I think, "Of course, that makes perfect sense! I should do this!". I know that there are some parents who see Hadley's hearing aids and immediately make assumptions (both positive and negative). I also know that there are loads of parents who only notice Hadley's hearing aids later on in the school year and are surprised that I had never said anything. Now that we are using a soundfield system in the classroom, there's an impact on the rest of the students in the classroom, so a part of me feels an obligation to speak up earlier in the year (I didn't think about this until last year at the school's open house, when I overheard a teacher explaining it to another parent who had asked why speakers were in the classroom).

The good news is that with every year, there are fewer people who are meeting Hadley for the first time (the benefit of living in a town where all the kids go to the same schools together from kindergarten on). But, first impressions linger (the downside of living in a town where all the kids go to the same schools together from kindergarten on!).

I've really been stuck on this...until I finally remembered that I could just ask Hadley what she thought. (It took me long enough!). She began to answer me, stopped for a moment, stood absolutely still for a few moments more, then responded, "Why don't we just wait until I see how many kids I know in my class, then I'll let you know."

So, that's what we're doing: waiting. And she'll let me know. Excellent!

Snap, Crackle & Pop!

2009-08-25T12:19:00.004-04:00

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!).

The Importance of Conversation

2009-07-25T21:58:00.007-04:00

I have to admit, it kind of irks me when people comment about Hadley's vast vocabulary or strong conversational skills, as if her skills are wildly abnormal. It's a weird thing to be bothered by-- it is a compliment to her, after all-- but the comments make me wonder if I went too far overboard in the early years of developing her spoken language. Did I do too much and now she sticks out? Many of us AVT parents have joked about how we now have to teach our children to stop talking or how they all sound like little adults with their expansive vocabularies. But behind each joke is a niggling concern that perhaps something we did in the name of therapy went above and beyond what was good for our child...

Added to this is the feeling that sometimes Hadley gets dismissed as an AVT superstar, that her skills and strengths are an anomaly and not to be expected of a "regular" hard-of-hearing child. Yes, she speaks and listens well now, but these skills were not developed easily, rather were the result of hard, hard work-- ours and hers. There were obstacles to overcome and long periods of time where we wondered how to blast through a plateau. There are still concerns, some large, some small. Just because she speaks well doesn't mean that there aren't underlying issues; living life with a hearing loss encompasses a lot more than just listening and speaking.

So, on the one hand, we work incredibly hard to provide a rich and stimulating environment for our kids that gives them ample opportunity to immerse themselves in spoken language. But, on the other hand, our kids can make it look so easy, so others have no idea of the extra effort they expend day after day after day. What's an AVT parent to do?

A fellow AVT parent shared this article last week (Conversing Helps Language Development More Than Reading Alone), which was timely as I was, once again, wondering if I offer Hadley too many opportunities to enrich her language. In short, the study examined the effectiveness of reading to a child versus engaging the child in conversation. While, of course, both are good things to do with your child, the study concluded that having a two-way conversation with your child aged 0-4 was six times as effective in developing strong language skills as talking at your child. Validation! All of those hours we spent prying responses out of Hadley were more important than the countless hours we spent reading together or narrating the world to her. No, we didn't buy a LeapPad or Hooked on Phonics or some other special DVD or set the timer to read 30 minutes a day to her. We talked. We chatted. We read. We conversed some more.

This doesn't solve the dilemma of our kids making their hearing loss look easy...that's an issue that I know we'll be dealing with on an evolving basis for years to come. But it's nice to be reminded that all we did for Hadley in those early years wasn't necessarily what we had to do because of her hearing loss. It's just good practice for any parent who wants to promote strong language development in their child.

Having been reminded of this...I have two 2 1/2 year old boys who need the same rich language environment that their sister thrived in. Time to talk, stop and listen more with them too!

Swimming Lessons, 2009

2009-07-24T22:32:00.007-04:00

I have posted a bit about Hadley's success with waterproof hearing aids and previous swimming instructors. We've had an interesting summer with swimming to date. This June, Hadley resumed swimming lessons at a local swimming club. This place has been a great match for her because all of the instructors are actually adults! Previously, she had had fun in the water with her college aged instructors, but for the last year, she has actually been swimming. This is a HUGE deal to Hadley, as several of her friends swim on real swim teams and are concerned with time as opposed to actually swimming on their own!

We've tried something new this summer, which seems to be working so far. Rayovac has a new "Extreme Performance" line of hearing aid batteries that are supposed to withstand exposure to moisture, sweat and water...and, guess what? They kind of do! (ok, it's not perfect, but it is BETTER). After a 30 minute lesson (where her aids are consistently submerged), Hadley still can hear out of at least one water aid, sometimes two. In the past, she was lucky to get 10 minutes out of each aid. Not only can she hear the instructor, but she can chat with the other kids in the class, too. (Great for her, and me, too-- I've met another parent with twins the same age as mine!).

Instructionally, it's been a great summer for Hadley. She is swimming at what I would consider age level. I don't worry any longer about her swimming abillity when she is invited to a pool party. She feels so confident in her swimming skills and-- other than jumping off the diving board-- she's happy with what she can do in the water. She can easily switch from her regular aids to her water aids all by herself.

Are things perfect? No. But both Hadley and I feel a lot better about pool and swimming safety this summer-- and I'll take that over perfect any day!

Hearing Pride

2009-07-22T10:25:00.003-04:00

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.

Things that Go Bump in the Night

2009-07-10T14:01:00.004-04:00

When we moved into our new house two years ago, we asked the builder to swap out the regular smoke detector in Hadley's room with a smoke detector with a flashing light. While we have had ample opportunity to experience the system, last weekend we lived through what is probably the "perfect storm" of fire safety. An earlier nightmare had brought me to Hadley's bedroom, where I had fallen asleep. Her lights were off, her nightlight had been unplugged, and somehow her bedroom door had been closed. Her room was pitch black. Our smoke detectors (which are extra sensitive to humidity) went off in the middle of the night. I was up immediately, holding Hadley's hand, and heading to the door-- when/////suddenly/////I couldn't///// tell ////where////the door///was////because of the/////strobe////light/////from the////special smoke////detector. No amount of nightclub lighting could have prepared me for this. It took us almost 10 seconds to go the 5 feet to the door-- which I then promptly opened into Hadley's forehead since I was so disoriented. By the time we made it to the hallway, the alarms had reset themselves and all was back to normal. This left us with just enough energy to see the giant dent I had made in Hadley's head and fetch her some ice. Six days later, she still has a big bruise.

Lesson learned: add a nightlight to the outlet nearest to the bedroom door so you can focus your eyes on that. And add "call electrician to replace faulty detectors" to that long list of things to do.

Understanding the Hearing Loss, Part 2

2009-07-08T07:41:00.002-04:00

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.

Understanding the Hearing Loss

2009-07-06T13:28:00.004-04:00

A similar question has appeared on several discussion lists that I read: "When did your child understand that s/he has a hearing loss?"

When Hadley was much younger, we gave her language about her hearing aids in the same way we talked about anything new: she had two eyes, one nose, one mouth, two ears, two hearing aids, two earmolds, one head... The physical aspects of her hearing loss were just incorporated into her own self. By the time she was a toddler, we talked about how her hearing aids helped her ears to hear better. She understood that she heard better when her hearing aids were on. As a preschooler at an integrated preschool, she and her friends could characterize each other's medical issues. Hadley has always been able to articulate what her hearing aids are and why she wears them, gradually adding more details to the specifics (I once overheard her talking about "mutated genes" to a classmate).

It's really been in the last year that Hadley has begun to talk to us about what it means to live her life with a hearing loss. Most of the time, her comments are about what she can hear: being surprised that she can hear the fire alarm when her hearing aids are out or being able to tell the difference between all of the bird calls in our neighborhood. When an adult told her that she needed to let him know when she didn't hear him, she was able to tell him that sometimes she doesn't even know that she missed something that was said to her. She has a greater understanding that she works hard to hear (see My Life), as well as an appreciation for what she can hear.

But there are still times that catch her--and us-- by surprise. A few mornings ago, the kids and I were playing in a room with all of the windows open. Her 2 1/2 year old brothers suddenly heard a fire engine siren and began to jabber on about seeing a fire truck while they raced to the window to watch the truck pass our house. Hadley had no idea what they were doing, no idea why they had suddenly raced away from her. By the time I explained it to her, she could hear the sirens as well and raced to join her brothers at the window. Later on, she became a little tearful with me, saying she was sad that she couldn't hear the sirens at the same time as everyone else, that she was always afraid she was missing out on things she couldn't hear.

Understanding what it is to live life with a hearing loss is a process-- for Hadley and for us. We now know that there is no magic age where suddenly all of the questions are answered. But each time Hadley talks about these moments of missed hearing, it's another chance for her to figure out what she can do when she is in the situation again.

Case in point: after the tears, Hadley suggested that perhaps her brothers heard the siren first because she was doing all of the talking, and they all of the listening. We came up with a few strategies that relied on visual clues or asking for clarification. Her solution? To listen more and pay closer attention to what the people playing with her are saying. Only an AVT kid would recommend more careful listening to the problem of not hearing something in the first place!

21st Century Solutions

2009-06-30T09:12:00.015-04:00

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.

First Grade: Recap and Lessons Learned

2009-06-29T14:05:00.008-04:00

The year we were waiting for: first grade! Full days of school...art, music, gym, library, and Spanish classes...lunch in the cafeteria...using a soundfield system. This was the year that was truly going to show what was working for Hadley...and what was not.

Transitioning to a full day of school was definitely a process for Hadley. It's a long, long day to be using your very best listening and coping skills. By the time Hadley stepped off the school bus at the end of the day, she was wiped out. We learned quickly that having a snack already prepared and waiting for her helped give her that little energy boost, as did staying outside to play for as long as possible. The toughest part was balancing her brothers' desire to play with her and her need to just do her own thing. I purposely did not schedule any weekly after school activities for the first few months of first grade; she needed those hours after school to be on her own terms. It took about two months for her to adjust to the full day schedule and build up her endurance for the long days.

We had purposely refrained from using a soundfield system in earlier school years, in order for Hadley to further develop her listening, discrimination and self-advocacy skills. We opted to use it in first grade now that the level of instruction was directed at the full group of students in the classroom. Four speakers were installed in the "teaching" section of the classroom (which was roughly half of the room). This was the teacher's first year of using a soundfield system, so there was an adjustment period of remembering to turn it on/off, dealing with the inevitable technical issues, and following a process for use of the system by substitute teachers. While Hadley was not completed wowed by the system-- she didn't feel that immediate sense of her listening being improved by it-- there was a clear difference in her level of energy and demeanor on days when she returned from school and the soundfield system had not been used (there were some early repair issues as well as days that substitute teachers did not use it). Like other AV kids, she was annoyed and very distracted by the occasional static and feedback from the system, but she adjusted over the course of the year.

While a soundfield system was also used in the Spanish classroom, her other specials (music, art, gym, and library) did not. Given the acoustics and method of instruction in the art room, Hadley managed just fine. Music was tricky: although Hadley had taken music lessons for years, she had difficulty transferring those skills to her school music class. Library time was fine, as it was just free time to choose a book. Gym was the hardest. Although Hadley's 504 Plan states that her class will be the only class to use the gym during classtime, it's still a large, open room that presents a huge listening challenge. It took the entire school year for Hadley to adjust; although she had taken many sports, she always had at least one parent there to clue her in to missed instructions (and more than one coach). Listening in a pack of 20 kids to one adult who may have turned away from her momentarily was impossibly frustrating for her, and did eventually lead to my having a discussion with the gym teacher (which helped).

It came as no surprise that the hardest part of first grade was dealing with social situations, particularly during unstructured times of the school day (recess, in particular). While Hadley is friendly and very outgoing, she also likes to control conversations and games (in part because it makes it easier to anticipate what her friends are going to say and do). She also relies on visual clues from other kids, so sometimes she's one of the last to stop playing a game. Sometimes when a kid runs off to play another game, she takes it personally, having not heard the invitation to join in. This is the hardest part: the only way for her to learn is to be in these situations on her own. We can make it a little easier with outside play dates and activities, but ultimately she has to learn these skills on her own...which involved more than a few tears this past year. The playground can be a very lonely place when you think that everyone wants to play with other kids, and even a minute of discomfort feels like hours.

Ultimately, what we learned in first grade was that Hadley has a strong foundation for her academic life and that, as always, her toughest struggle continues to be understanding her interactions with her peers (which isn't much different from other seven year old kids). Now on to grade two!

My Life, by Hadley W.

2009-05-28T10:20:00.007-04:00

Hadley posted this on the fridge last week. She told us she wrote it to share with her classmates.

My Life
I work hard. My life is very hard. I try very hard to hear things. My family helps me too. I go (to) the adioulojust's offis (audiologist's office). I enjoy going there. I try to help with many different kids. I was born with a severe hearing loss. I wear hearing aids to help me hear. I can hear very loud noises without my aids. I work very hard!

Any quiesteons? (questions)

We don't often talk to Hadley about "working hard", but clearly it was on her mind when she worked on this piece.

Do You Know the Sign for...?

2009-05-24T21:48:00.007-04:00

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.

Taking the Big Step: Kindergarten

2009-03-24T21:45:00.007-04:00

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

Having More Children

2009-03-18T14:01:00.009-04:00

Dan and I had always talked about having more than one child. However, once I knew exactly what needed to happen for Hadley to be a successful listener and speaker, I put all thoughts of another child on hold. All of the research supported the fact that the first three years were critical for any child, and I didn’t want to do anything would detract from that for Hadley. My own brother and I are almost exactly four years apart, and that worked well for us, so I thought I had plenty of time. Our focus was to do all we could to develop Hadley’s listening and speaking abilities. Everything else could wait.

By the time Hadley was three, she frequently talked about having a brother or sister. Many of her friends were becoming big sisters, and she wanted to know when she would as well! Dan and I were well aware that any child of ours had a 25% chance of inheriting a Connexin 26 hearing loss. Of children with Connexin 26 hearing loss, approximately 60% of them have a profound loss or more, requiring a cochlear implant. Hadley fell into the 20% category of “just” a severe loss. We were quite confident at this point in our abilities to be capable parents and strong advocates for a hearing aid using child. Cochlear implants came with a different category of concerns and challenges. Could we handle that? Hadley’s first few years had been extremely intense. Could we continue to give her what she needed and simultaneously do the same for another child? While diagnosing the cause of Hadley’s hearing loss, the genetic counselors informed us of the option to have other children through fertility treatment and screen for the Connexin 26 gene. Was that the way to go? There were no clear answers (believe me, we asked many parents and professionals!). By now, we were used to thinking of Hadley as a person first, her hearing loss second. Both Dan and I are the oldest children in our families; we wanted that experience for Hadley too. Hadley continued to tell us that she wanted a baby in the family. Our family just didn’t seem complete at three.

As fate would have it, our family wasn’t complete at four either. In December 2006, Hadley became the big sister to twin boys, Conor and Brady. Although we had prepared ourselves—and Hadley—for the news of another hearing loss, both Conor and Brady passed their newborn hearing screen at the hospital, as well as subsequent ABRs at Children’s Hospital Boston. They are healthy, hearing boys who challenge our parenting in a host of new ways! Being a big sister has expanded Hadley in countless ways. Other than choosing AVT as our communication methodology, giving her this expanded role in our family is among the best decisions we have made for her—and us.

Hadley (5 1/2 years) with Brady and Conor (2 months), February 2007

Hadley sings to Conor (4 months old), April 2007

Sharing the News, Sharing the Work

2009-03-17T20:46:00.006-04:00

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

2009-03-11T19:41:00.008-04:00

"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

The Experience Book

2009-03-09T20:38:00.009-04:00

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

2009-03-03T14:39:00.007-05:00

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

2009-02-26T13:00:00.008-05:00

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

2009-02-25T14:35:00.005-05:00

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

2009-02-25T12:56:00.009-05:00

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

2009-02-24T21:02:00.004-05:00

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

2009-02-24T16:05:00.008-05:00

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

2009-02-23T21:55:00.003-05:00

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.

The Journey to Hearing Aids

2009-02-23T21:26:00.009-05:00

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.

Receiving the Initial News

2009-02-23T21:16:00.000-05:00

Hadley was three days old when we learned that she had a potential hearing loss. A newborn hearing screen was required on all infants, and as our discharge time approached, Hadley had not yet completed the test. I was confused by this, as I had a vague memory of a nurse telling me in the middle of one night that she was taking Hadley to have her hearing checked. Dan and I walked around the maternity ward, occasionally looking through the window to the nursery where a nurse was performing the test. We watched her shake her head several times; I remember wondering if she knew what she was doing. The nurse stopped us during one of our laps, asking, "Is anyone in your family deaf?". When we answered no, she asked us to bring our baby back in a few days to have Hadley tested by the regular technician. The nurse thought that maybe she was using the machine incorrectly.

We left the hospital a few minutes later, and brought Hadley home to the house. As excited as we were to have her home (This is the kitchen! These are stairs! This is your room!), we were stunned by what had happened at the hospital. Was there a problem? Did the nurse just not know what she was doing? How can we wait two more days?

Two days later, we all returned to the maternity ward. We met with the woman who had been trained to administer the newborn hearing screen. She let me hold Hadley while she placed small electrodes across her forehead and behind her head. I stayed in the room while she began the test, Hadley sleeping soundly throughout. She ran the test twice, coming up with the same results each time: refer. I received a quick explanation that "refer" meant that Hadley's brain did not respond to all of the sounds administered during the test. This could be from something as simple as a little fluid in the ears or signify a larger problem. The protocol, we were told, was to wait two months and test again with an audiologist. We were given the name and number of the audiologist who did all of these referrals, and the November appointment was made for us right then and there. She even ducked into the nursery supply closet and loaded up a huge shopping bag of free diapers, wipes and other essentials. The freebies did not make us feel any better. We took Hadley home and began our wait.

A Little About Us

2009-02-23T15:09:00.004-05:00

Dan and I met as undergraduates at Swarthmore College. I was 18, he was 20, and pretty soon we were well on our way to planning our life together. Soon after my graduation, we relocated to Massachusetts, where we had both grown up. Dan completed graduate school in pharmacology and enrolled in law school. I moved from a job in executive search recruiting to college career counseling and recruiting. We married after five years of dating. Life was great. Dan worked as a patent attorney at a large Boston law firm. I had the most perfect job at Boston University School of Management doing a little bit of everything that I loved: teaching, recruiting, developing, advising, managing. We saved and saved, and finally bought a house we loved in a town by the beach. We were thrilled when I became pregnant after five years of marriage and were excited to discover our baby was a girl. As we neared the end of the very normal pregnancy, we very eagerly anticipated her arrival.

Hadley was born in late September 2001, following an uncomplicated natural birth at our local hospital. We held her close in those first few hours, singing, talking, and showing her the world outside the window. We couldn't wait to bring her home.

From Here to Hear

2009-02-04T14:14:00.002-05:00

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.