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!