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.

February 24, 2009

The First Year of AVT

Hadley was six months old when we began our two hour weekly AVT sessions with Lea Watson. Initially, we treated AVT as a big research project. I read every book I could about auditory-verbal therapy, joined every organization for parents of hard-of-hearing children, learned what other auditory-verbal programs did, and reviewed all of the research on genetics and hearing loss. I joked that it was just like being back in college, except my grade was my daughter's development.

For me, the key to making the first year of AVT work was having complete faith in Lea. By the time we met her, Dan and I had already weeded through various professionals in our quest to develop a strong support team for Hadley. We had a sense of what we were looking for. There was an instant connection with Lea that developed quickly into a strong trust of her judgment. I remember telling Dan that I would do everything she suggested for six months in order to make the best effort at making AVT work for our family. Looking back, that effort was similar to maintaining an exercise routine or giving up caffeine. We made an immediate lifestyle choice to commit ourselves to AVT. This was not rocket science: talking, singing, reading books- all normal, natural things you would do with any baby. This was a decision to be actively engaged in developing our daughter's listening and speaking skills, and all that encompassed. It seems so simple, but it made a significant difference.

To Work or Not to Work

I have always been that person who loves her job, whether it was working at a beach house restaurant or advising graduate students on their job search. I had a truly great position at the Boston University School of Management, and a boss who really valued balancing work and home commitments. I expected to be a parent with a job outside of the home; we had excellent daycare and a flexible work schedule arranged. I felt a responsibility to maintain my job, as my own mother had. Between my maternity leave and Dan's family leave, one of us was at home with Hadley for the first six months. As we thought more about her hearing loss, the number of appointments, the commitment to therapy, and all that went in to raising a speaking child with a hearing loss, we began to question our decision to both return to our jobs.

Logistically, one day of every week was needed for auditory-verbal therapy. Our two hour sessions were held in Gloucester, at least a 75 minute drive from us, in each direction. Looking at the calendar, we had at least two additional appointments every week, for audiology and Early Intervention. We also knew how critical the first months of listening were, as well as beginning therapy. We just didn't want to risk that time. So, with some trepidation, I left my job and focused on being an at-home parent.

I treated my role at home as my full-time job. "Work hours" were focused on creating a world full of sounds and rich language for Hadley. I left each AVT session with Lea with a list of things to do: research to review, books to read to Hadley, weekly focus words and sounds, toys to use, activities to do. For the first few months, I was in project mode. This was familiar territory for me.

(Since then, I've met any number of AV families who have balanced work, therapy sessions, and family life all very admirably. The beauty of auditory-verbal therapy is that anyone can do it. All of your interactions with your child can be rich with language and meaning. You can find caregivers who are willing to understand the fundamentals and implement them with your child; a good caregiver will recognize these as beneficial and necessary to any child, regardless of hearing status. It's all about making AVT work for your family and your circumstances.)

February 23, 2009

Choosing Auditory-Verbal Therapy

While working with the team at Children’s Hospital, we also began our own research on Hadley’s hearing loss. We learned about Sue Schwartz’ book, Choices in Deafness, and immediately read that to familiarize ourselves on the different approaches. Instinctively, we knew that sign language was not going to be a part of our life. While we had attempted to incorporate a few signs into our interactions with Hadley, it always seemed forced and contrived. We wanted her to speak! Choices validated for us that there were several other options that held great potential for Hadley. One of them especially, auditory-verbal therapy, struck us as being most appropriate.

We narrowed our options to three programs in the Boston area and began the task of interviewing. Following the typical philosophy of scheduling the first interview with the program of least possible interest, we made an appointment with Lea and Jim Watson at the Auditory-Verbal Communication Center. We had mentally crossed them off our list as their office was quite a distance from us (on the North Shore! through Boston!), but wanted to meet them since people we respected at Children’s spoke of the Watsons in reverential terms. Armed with two pages of questions, a laundry list of things we wanted from a program, and the desire to get going with responding to Hadley’s hearing loss, we showed up at their office door one March morning. Within a few minutes, both Dan and I were feeling great about our decision to meet with them. Within 30 minutes, I was half listening to Lea and half dreaming of what it would be like to come here every week. 2 ½ hours later, Dan and I walked back to the car considering the possibilities. As we drove back to Boston, the drive didn’t seem as long and the earlier list of cons didn’t appear as daunting. More importantly, we were thrilled by how Hadley had responded to Lea (and this was prior to receiving her hearing aids) and how Lea interacted with all of us. I told Dan I was very pleased that our first of three interviews had gone so well, that I knew that there was at least one good option out there for Hadley. Dan described me as simply being giddy with excitement.

The following week, Hadley and I observed a preschool nursery in Boston and met with the director and other parents. I knew immediately that this was not the place for Hadley—everyone was signing and excited about their children’s signing progress, but little was said about their language development—and kept looking at the clock, wishing I could leave. While the time there was valuable, I knew that this was just not the place for our family. The day before we visited the third place on our list, Clarke School East, I called Lea and made plans for Hadley to begin AVT. While we did attend that last interview, I spent the time comparing their philosophy to AVT and measuring their therapists against the Watsons. There was simply no comparison. We knew we were making the right decision by choosing AVT.

All along, AVT seemed like an obvious choice to us. Dan and I felt that we were absolutely the right people to raise Hadley in a speaking, listening and hearing environment. We wanted a relationship with someone who would acknowledge and respect our right to educate Hadley and serve to guide us along this path.

The Journey to Hearing Aids

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

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

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

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

Receiving the Initial News

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

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

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

A Little About Us

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

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

February 4, 2009

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.