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!

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.

Sharing the News, Sharing the Work

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

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

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

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

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

The Preschool Years

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

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

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

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

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

Hadley receiving her preschool graduation certificate from her fantastic teacher!

Learning to Listen through Music

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

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

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

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

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

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

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

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

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

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

The First Key to Success: Reading

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

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

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

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

Becoming Verbal

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

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

Receiving the Initial News

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

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

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

From Here to Hear

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

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