December 6, 2009

A Musical World

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!

November 23, 2009

I'm Gonna Eat on Thanksgiving Day

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).

October 15, 2009

When Silence is NOT Golden

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.

October 1, 2009

"I don't have special needs!"

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, 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, 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).

September 29, 2009

Let's Go Crazy*

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

September 3, 2009

Quality of Life of D/HOH Children Study

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

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

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

September 2, 2009

Something Unique

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!

September 1, 2009

School Time!

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!

August 25, 2009

Snap, Crackle & Pop!

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

Have you figured out what happened next?

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

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

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

July 25, 2009

The Importance of Conversation

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!

July 24, 2009

Swimming Lessons, 2009

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!

July 22, 2009

Hearing Pride

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

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

July 10, 2009

Things that Go Bump in the Night

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.

July 8, 2009

Understanding the Hearing Loss, Part 2

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

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

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

July 6, 2009

Understanding the Hearing Loss

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!

June 30, 2009

21st Century Solutions

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

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

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

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

June 29, 2009

First Grade: Recap and Lessons Learned

The year we were waiting for: first grade! Full days of, 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!

May 28, 2009

My Life, by Hadley W.

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.

May 24, 2009

Do You Know the Sign for...?

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

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

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

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

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

March 24, 2009

Taking the Big Step: Kindergarten

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

Hadley on her first day of kindergarten, September 2007

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

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

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

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

Hadley on her last day of kindergarten, June 2008

March 18, 2009

Having More Children

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

March 17, 2009

Sharing the News, Sharing the Work

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

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

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

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

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

March 11, 2009

Water Aids

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

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

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

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

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

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

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

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

Swimming Lesson, July 2008

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

September 2007

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

May 2008

March 9, 2009

The Experience Book

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


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.

March 3, 2009

The Preschool Years

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

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

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

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

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

Hadley receiving her preschool graduation certificate from her fantastic teacher!

February 26, 2009

Learning to Listen through Music

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

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

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

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

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

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

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

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

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

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

February 25, 2009

The First Key to Success: Reading

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

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

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

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

Becoming Verbal

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

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