December 27, 2010

Doing what's best for...

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

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

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

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

December 22, 2010

Happy Holidays!

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

Stirling Snowman Christmas
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December 9, 2010

Telephone Time

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

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

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

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

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

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

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

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

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

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

December 8, 2010

Insurance Coverage for Hearing Aids

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

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

December 5, 2010

Piano Concert

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.

December 3, 2010

Support John Tracy Clinic's Quest for 250K

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

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

November 30, 2010

Calling for Backup

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!

November 19, 2010

The Wheels on the Bus...

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...

November 11, 2010

Of all the things...

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.

November 9, 2010

Living without Listening

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!

November 8, 2010

There's a Fungus Among Us

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!

November 6, 2010

When adults say stupid (yes, stupid) things

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 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.

October 27, 2010

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

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

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

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

October 19, 2010

Decision Time!

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

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

September 7, 2010

Demo Days, continued

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

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

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

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

August 25, 2010

(Preschool) Lessons Learned

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!

August 17, 2010

They're Not YOUR Friends!

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.

August 16, 2010

Demo Days, Take Two

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

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

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

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

August 9, 2010

Demo Days

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

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

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

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

July 25, 2010

"I Can Stream Netflix to My Ears!"

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

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

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

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

"Mom. Does it work with TV?"

"The computer?"

"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?

July 11, 2010

The Dangers of Passive Listening

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

Yes, we all know what happened next.

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

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

July 7, 2010

Wordless Books: The Hows and Whys

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!".


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

July 1, 2010

Pool Time, Part 2

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!

June 28, 2010

Pool Time!

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.

June 18, 2010

Ars gratia artis...and more

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

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.

June 11, 2010

The Feelings Book

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 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.

June 6, 2010

Dr Mom Otoscopes

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.

June 5, 2010

Music & Light Bulbs

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.

May 31, 2010

Memorial Day Parade

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!

May 29, 2010

Reading "Never Ask a Bear"

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

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

May 24, 2010

Sticks and Stones

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.

May 21, 2010

Am I Hearing Now?

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!

May 20, 2010

...and we're back!

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

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

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

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

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

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