September 12, 2011

And, we're back (again)!

Unintentionally, I took the summer off from this blog. Here's a recap:
  • Hadley finished third grade, which was an overwhelmingly positive year. Caring and compassionate teachers make all the difference, and she had that in abundance. Despite crazy childhood illnesses keeping her from school a whopping 17 days (!!), I'd say it was her best school year yet.
  • Summer 2011 was devoted to amusement parks (Hershey Park and Dutch Wonderland in Pennsylvania and our more local favorites, Story Land and Santa's Village in New Hampshire). Hadley tested the water resiliency of the Naida in some of the tamer water rides like log flume roller coasters (no problem), but stuck to her water aids for water park rides like wave pools. She also opted to remove her hearing aids on fast rollercoasters at Hershey Park on the off chance they'd fall out. Next time, we may bring our old, trusty SafeNSound straps to better secure them.
  • When we weren't away, we were either at the beach, in a pool, or playing in water, somewhere. Hadley's water aids got a workout this summer! Each aid is at least eight years old now, and I'm not sure how much more we can eke out of them. We live in a beach community, so having great access to sound in wet conditions is vital for Hadley. We'll have to make some decisions in the coming year.
  • Thanks to this blog and referrals from AVT professionals, I had a chance to talk and email with other AVT parents from all over the world. It's fun to connect with other families, especially those with young children still in regular therapy sessions.
  • While I wasn't writing here, you can read what I was up to.
We're now back to school, adjusting to new schedules, new teachers, new activities and new expectations. Things are good!

June 12, 2011

A Blast from the Past

Hadley and I dropped in on an AVT session this week, joining another family with two school aged HOH children who switched to auditory-verbal therapy this year. It's been more than four years since Hadley's last official AVT session; I was excited to return and Hadley was a little apprehensive. She remembers many details of her weekly visits with Lea, Jim and, later, Carrie, but was somewhat nervous of being judged or graded! It took only seconds for her to shake it off and get back into action...the girl does love to impress, after all.
We had never officially met this therapist before, so it was interesting to me to see her style and approach toward older kids. AVT is family-centered therapy, and I've always felt it important for the therapist to be more of a friendly supporter of the family than an instructor of the child. This is especially true when the meeting is taking place after a long day at school. I love then the child is included in the plans for the session, and liked how the therapist pulled out the previously agreed upon AVT goals and shared them with her student. Almost 10 year old girls can be a tricky audience, but the activities they did were all on target with their interests and kept their attention. I was impressed!

Halfway through the session, when the girls were doing an auditory memory exercise involving listening to and repeating back a complex sentence, I suddenly realized that this was the first time in a while that I was sitting at a table and completely focused on Hadley's words. Sure, we talk a lot, but that's often while driving in a car, over a meal with two preschoolers, or in the midst of errands or chores. Even when I'm "listening" to her, I'm often multi-thinking, going over the things I need to do, noticing stuff that needs to be put away, or remembering some long-lost thought and desperately trying to retain it. This time, I was really listening to her words to see how accurate her speech discrimination and memory retention was (pretty accurate!). It was a good reminder to me to make sure I'm that focused on her more frequently, when her words are actually more important than a repetition of an American Girls article.

My other takeaway from the session is how glad I am that we've always focused on strengthening Hadley's listening and speech discrimination skills in all environments, not just quiet situations. This is something we did in AVT sessions from the very, very beginning and it's stuck with us (despite other professionals in the hearing loss field instructing us to restrict environmental noises, like the dishwasher, air conditioner, or washing machine, as much as possible). Background noise exists in the regular world and there won't always be a soundfield system or other additional technology to make things easier for her. Hadley's not 100% in these adverse hearing situations, but then again no person is, regardless of hearing status.

When we transitioned out of our regular weekly AVT sessions, I was somewhat apprehensive of giving up the safety net of regular contact of a trusted professional. I worried that we might miss signs of Hadley regressing or facing difficult situations. Over the five years, I've lost those fears and have felt confident in our ability to build upon her early AVT foundation. Seeing Hadley in action this week confirmed that all for me. I'd strongly recommend anyone who has "graduated" from regular sessions to take a trip back sometime. I can't wait to crash a session again!

May 16, 2011

As the World Turns

When Hadley was first born, I never thought there would be days when I would forget that she lived with a hearing loss. But, sure enough, one day I realized that I hadn't yet thought about her hearing aids or hearing status. We were just living life and rolling with it.


Not one to document all of life's little moments, there were still many times when Hadley would say or do something so extraordinary (or, to be honest, so outrageous) that I'd think to myself, "Oh, I'll never forget this. No need to write it down." I've since forgotten a bunch of them (which is okay, because there are always new moments being made).

Yet, with all of these stories, I never once imagined that I'd forget any of the technical details about Hadley's hearing loss: the nuts and bolts of her audiogram, her hearing history, her hearing aid specifications. These are the absolutes of her life that are basically tattooed onto my brain. I use these facts constantly with educators, professionals and other parents. It just can't be possible for me to ever forget, right?

Last week, while searching for an old hearing aid to temporarily replace her current one that was in need of repair, I found myself trying to remember which were her last hearing aids. Were they the brown Trianos? The purple Centras? How could I possibly not recall this? And if I'm forgetting these details after just nine years, what will I forget in the next nine?

Hadley's fantastic AV therapist sent me a puzzling message on May 5, asking me if I had snapped many pictures on Cinco de Mayo. Why would I do that? Hours later, I recalled that for five years, I took pictures of Hadley all through the day to create a day-in-the-life-of-Hadley experience book. These books took hours to create and were read and reread constantly (and are now tucked away on a bookshelf in our office). I talked to other parents about how fun it was to make these books and how useful they were as a therapy tool. How could I have forgotten?

Meanwhile, Hadley's back up hearing aid has been in my wallet for two weeks. I keep meaning to put it safely away in its container until the next hearing aid malfunction, but other things (broken washing machine, rescheduled dentist appointments, a gazillion kids activities) get in the way. I'm compulsive about cashing even the smallest checks right away, to avoid having them fall out of my wallet, but I've been walking around with 3K worth of tiny technology in there. I used to always have at least a one month's supply of batteries on hand for her hearing aids, plus spare packs in my bag, the car, and her backpack...we have a single lone battery, total, right now. What is going on with me?!

A friend further down this path (her hard-of-hearing kids are in high school and college) reminded me that this is all okay. We're living a typical busy family life, one that happens to include extra details related to hearing loss. Some days these details are very, very important. Other days, not so much. Luckily, right now our focus is on the final weeks of the school year (June 22!), spring sports (softball and golf), and making plans with family and friends. As weird as it is to say this, hearing loss is taking a back seat right now...and that's okay with all of us.

****************
I know, nearly two months without a post. What happened? Well, the kids swapped viruses for most of March and April and finally shared them with me, giving me the gift of pneumonia. We've been making up the lost weeks of school work and building up our energy so we can enjoy the spring and summer...if it ever arrives here in the Northeast!

March 21, 2011

Facebook and "Special Education Week"

If you're on Facebook, chances are you've seen variations of this over the last year or two:

"People need to understand that children with special needs don't have an illness, they are not looking for a cure, only acceptance. 93% of you probably won't copy and paste this! Will you be in the 7% that will and leave it up as your status for one hour? It's Special Education Week!"

This has bugged me since the first day I read it, but I'm finally getting around to blogging about it. Here's a newsflash, folks: there is no "Special Education Week." You probably already figured that out, since this status appears from time to time throughout the year. Not a big deal, I agree.
But this line gets me every time: "they are not looking for a cure, only acceptance." Guess what, folks: they want that, too! They want a cure! Really, really, they do!

Sure, acceptance is great: most kids forget that Hadley has hearing aids on her head. (Until the teacher has them write nice things about their peers. Then Hadley receives 20+ comments about how well she listens.) Classmates jump at the chance to use the microphone with the soundfield system or turn the speaker off; they all love reminding the teacher that the lapel mic is still on. Every once in a while, someone may tease, but that's been pretty isolated so far.

Acceptance is fine... but Hadley still feels different. Yes, she does really well: her speech is great; she reads incredibly well; she advocates for herself; she's a good student. But feeling accepted by her peers doesn't change the fact that her life is different than a typical 9 year old girl. It might make things easier sometimes, but it doesn't change facts.

Adults have a different version of acceptance: pretending the difference doesn't exist or minimizing the challenges that Hadley faces every day. I've had school team meetings where I've spent more time explaining the real obstacles Hadley encounters than determining appropriate services and accommodations. In their haste to show their acceptance, sometimes adults rush a conversation with their assurances of understanding, declaring that they know exactly what I mean and thereby missing the message entirely. And, yes, sometimes adults tease (it's not funny to say to me, "What is she, deaf?") or are completely inappropriate (like the parent who, at the integrated preschool open house, leaned over and whispered to me, "I hear there's a deaf girl in the class. That's not good.")

Yes: acceptance is all fine and dandy. Knowing that nearly all the people Hadley meets will try, in some form or another, to learn a little about her and understand her is fantastic. All kids need that kind of safety net in their lives. No, we don't live under an umbrella of naivete that there will be a cure for Connexin 26 related hearing loss...but that doesn't mean we don't want one.

So, next time you're tempted to be one of the 1, 3, 7, or whatever incalculable % of Facebook users to update about Whatever Week for acceptance, think for a moment and, if you really must paste and post, take a moment to edit your copy to include the word "cure." Quite honestly, we want both: for everyone around our children to be welcoming, friendly, and understanding of all their needs, special or not. Just because these particular kids wound up with an unexpected twist of genes doesn't mean we limit ourselves (or them) to mere acceptance. It's okay to hope for a cure, whether its within the realm of possibility or not. We do.

March 6, 2011

The Friend Connection

Finding other families with hard-of-hearing children seemed like such an important thing to do when Hadley was younger. It was obviously helpful to me, as I shared my ideas and complaints with other parents who understood the not-so-obvious challenges of raising a child with a hearing loss. I took it for granted that some day Hadley would want to know other kids who listen to the world through hearing aids. In our years of auditory-verbal therapy, we overlapped our sessions to meet other children and their families. This was great for me and Hadley liked it too, but there was nothing special or unique about her interactions with other kids. They were simply kids playing with kids, just with a few thousand dollars worth of technology on their heads.

We happen to live in an area with several other mainstreamed hard-of-hearing children, all of whom are being raised to listen and speak with their voices. I thought now that Hadley was older, she might seek these kids out or benefit from some regular contact with them. Hadley really likes them all, and I've loved getting to know the parents, but there is nothing special or unique about her interactions with these kids. They are simply kids playing with kids, just with a few thousand dollars worth of technology on their heads. (Are you sensing a theme?)

Earlier this winter, I was asked to speak to another mom in the area and answer some questions about auditory-verbal therapy for her daughter. Who is also 9. Who was also identified at birth with a hearing loss. Who also wears hearing aids. Who also is spirited, outgoing, talkative and dramatic. We agreed to introduce the girls to each other, and I really though it would be just like before: they'd meet, they'd have a good time, they'd go home.

What passed over the following two hours was straight out of a movie. They immediately checked out each other's hearing aids (and clothes). Hadley and E compared trials and tribulations of living life with a hearing loss (and compared favorite music and toys). They unconsciously repeated words and rephrased sentences if the other misheard or misunderstood what was said. It occurred to me that Hadley was displaying the truest version of herself to E. The thin, protective wall that often exists while playing with other kids wasn't there.

Now, some people might read that statement as a reason for like to stay with like: that schools and communities for the deaf and hard-of-hearing provide environments for these kids to be their natural selves. Instead, I took this experience as a way for Hadley to further understand how she can hang out and play with all of her friends. We talked a bit about how it felt to meet E, if they played differently with each other, how they handled sharing and decision-making...and how Hadley could use these same strategies with any friend. Hadley and E have played together and emailed a bunch of times since first meeting in December. Each time, they talk less and less about their shared hearing loss and more and more about their other shared interests. Their friendship continues because of all these "others"; the hearing loss may have initiated their meeting, but their personalities will shape and define their relationship with one another.

So, no, I really don't think Hadley needs hard-of-hearing friends now any more than she did in the past. Certainly, this might change as she grows older and I'm open to that possibility. What has remained a constant is that I still need to know parents of hard-of-hearing kids. I learn so much from their experiences and bouncing ideas off of like-minded adults. Since I'll continue to seek out these parents who are committed to raising their kids to listen and speak, I know that door to making new friendships will always exist for Hadley as well.

In the end, hearing loss or no hearing loss, it's still pretty awesome to make a really good new friend. I have a feeling this is just the first of many more pictures to be taken of these two.



February 27, 2011

Why baby classes matter

I'll say it again: music was a huge influence in Hadley's language development from a very early age. Not only did I want to replicate that experience for my sons, I wanted them to know "Teacher", the woman (Sarah) behind this amazing music class.

Conor and Brady began attending the weekly Kodaly class when they were about 18 months old and I felt that was already late, as Hadley began at one year. From the start, Conor and Brady had dramatically different reactions to the experience. Brady was fully absorbed in the class: listening intently to the music, following Teacher, observing the older children, and mimicking hand gestures. In contrast, Conor couldn't wait for the class to end. The music was familiar to both of them, as we had listened to a CD of the class countless times. Of the two, Conor spent more time at home listening to and creating his own music out of our collection of instruments. He clearly loved music, but on his own terms.

Yet, week after week, I kept going with both boys, waiting for that day when it all came together. Year one passed...then two. While Conor's ability to stick with the class increased over time, he never once sat and participated for a class in its entirety. He knew the routine, stayed for the parts he enjoyed, left the circle when he grew disinterested, and returned to the group as his interest returned. Some activities he actively avoided, others he rushed back to join, so there was a predictable pattern to his behavior. At home, he sang all the songs and repeated many of the games, demonstrating that he was an active listener to the entire class, whether he was participating or sitting on the sidelines. He loved going to Teacher's house for Hadley's private piano lessons. Yet, each week Conor complained about going to his own music class.

Year three began last fall, and I'll admit that I was hesitant to sign them up. Let's face it: all of these activities require precious time, energy and money. We had already spent two years trying to make this work. I replicated most of the class at home, to the best of my ability. Was it time to admit defeat? I decided to give it one more class...and that was the class when it all, finally, came together.

Who knows what combination of factors finally caused Conor to sit and actively participate. Maybe it was his age (3 3/4 years). Or that he had just started preschool and was getting used to following group activities. Or he forgot over the summer break from class that he used to not participate. Whatever it was, Conor sang each and every word of each and every verse in each and every song. He sat and sang along to books. He sought out his favorite instruments. He grabbed a blanket and lay down to listen Teacher's lullabies. He sang out his goodbye. Looking at him, you'd never know that this boy had been a bystander for the previous 50 classes.

But Conor doesn't have a hearing loss-- why am I telling this story? Every parent of a hard of hearing child will tell you about living through plateaus: those long periods of time where your child doesn't show amazing progress, growth or improvement. Trusted professionals, after confirming that there's nothing else impeding development, tell you to wait it out and just keep doing what you're doing-- but that's so hard to do when there's no proof to those efforts. Plateaus exist for all people, and the message is always the same: keep on working at it, because those efforts will finally pay off.

I've had many conversations about why I should have stopped music class, why babies can't be expected to participate at this level, that it's unfair to push a child in an activity that is not enjoyed. I've had friends try this class and, exhausted after one hour of chasing down their toddler, announce that they'll try again when the child is older, that it's a waste of money otherwise, that it's too hard. Had I believed any of that, Conor would have started class again at square one, not knowing the songs, the routine, the structure, or the expectations. My actions would have suggested to my children that attendance at activities is only supported when participation is practically perfect.

Early exposure does make a difference. Continued exposure reduces lag time and gaps... whether we're talking language development or music appreciation.
Conor during instrument time, February 2011

February 9, 2011

The space and time to talk

In one of our early AVT sessions, Lea and I (and my father, who was attending the session) got to talking about babies and babbling. Lea stressed the importance of letting babies play and practice with sounds without the distraction or interference of adults. At the time, Hadley was about nine months old and, while she happily responded to sound and voices, she wasn't really playing with different sounds. Sure, she made sounds and altered the pitch and volume of her voice, but that was about it. Lea shared a simple observation that babies at the current time (this was 2002) spent less time on their own than in earlier times when infants were left for short periods in playpens. While she never said, "Kerry, place Hadley in a playpen for 20 minutes every morning and afternoon", her comments prompted me to consider how to balance surrounding Hadley with language with giving Hadley the chance to explore her sounds.

As many first-time parents, I had several firm opinions about how I'd raise my child, and being playpen free was one of them. Not only did the baby books I loved disapprove, but some of my earliest memories involve being on the "freedom" side of a homemade play enclosure, built for a family member who was confined for medical reasons. My dad and I spent much of the 90 minute car ride home talking about playpens, gates, and play spaces. Ultimately, I heightened my awareness of times when Hadley was involved in her own play, forcing myself to sit back and watch instead of inserting myself into her games.
Now, watching my 4 year old twins develop and explore their language, I'm reminded of Lea's advice to take a step back and observe. Conor and Brady have a rich vocabulary, but their articulation needs work. They've both been evaluated and both are developmentally on target, they simply need more time. I repeat their words, modeling the proper pronunciation. We play sound games to help correct their speech. But I resist the temptation to jump in and disrupt their play, especially in the middle of their elaborate role playing and fantasy games.

Conor, especially, loves to make up stories when he draws. He spends long periods of time with one piece of paper, coloring with markers, crayons, pencils. He talks the whole time. By the end of each day, the floor under the art table is covered with paper scraps. They all look pretty much the same:

Without seeing him in action, you'd think these are simply scribbles. You might comment on the waste of paper, the clean up, the marker on the floor, the broken crayons littering the table. But each and every one is a complex story, all of his own invention. This morning, I wrote down his words as he drew this:

"Fire, fire! There's a fire! Call 9-1-1! The firefighters race to the building. We need trucks! Get hoses! A firefighter rushes to the scene. Emergency! Here's a fire chief. We need a ladder! Get the aerial ladder! It goes up and up and up to get the people. Hey! They are stuck on the roof. Get the helicopter to come and get them. Whirrrrrrrrr. Now they are gone. Water! Water! Whoosh, whoosh. The fire is out."
His words are proof that he retains stories that we read out loud together, the facts he has learned from books, the images that accompany the action. It's all there in his memory, and he's taking all that knowledge and making it his own, both on paper and with his voice. Sure, I could sit with him and draw a decent fire station, truck, burning building and rescue workers, something that we could later hang on the fridge and admire, but the dialogue wouldn't come close to what Conor accomplishes alone.
Kids need the space and time to talk it out, to link words and ideas together, to practice all those ideas they've overheard. Conor and I can sit down at any other time and spell his name, practice writing letters, color in pictures...but nothing is better than letting him loose with $5 worth of paper and art supplies.

January 22, 2011

When it pays to be an AVT kid

Some people struggle to understand the difference between auditory-verbal therapy and other oral methods to develop spoken language in deaf and hard of hearing children. Even professionals in audiology and education have questioned why our kids need something other than speech services. I've always maintained that my daughter's hearing loss has nothing to do with what comes out of her mouth (what a speech language pathologist addresses) but is centered around what goes into her ears and processed by her brain.

With auditory-verbal therapy, Hadley learned how to maximize her hearing through careful listening and speech discrimination. We kept our expectations high as she began to talk, put words together, followed simple commands, then more complex requests. We talked in quiet rooms, but also in larger groups, crowds, restaurants, outside, at the playground, at the beach, in the car. We listened to sounds around us: household sounds, animals, instruments, music, construction, and weather. As she grew older, we expected more: just as one would with a typical child.

Part of my motivation to put so much language into Hadley from a very young age was out of concern that she would lose more hearing in her grade school years (something the research supported, at the time). As she experienced complications, through medical problems like ear infections to technology failures with hearing aids, I realized the importance of giving her the needed skills to continue to communicate with the whole world during these episodes. It's hard, but her ability to attend school and activities during these times is a direct result of the auditory-verbal tools she has developed (and continues to fine-tune).

In the nine years we have been in the AVT world, we have met some amazing friends and families who live and breathe AVT as we do. Several of their children are experiencing significant complications right now with their hearing that will likely require surgery in the very near future and follow up therapy. These AVT kids rely more than ever on their careful listening, attention to cues, and ability to discern and decipher speech sounds...and they can do it because they've been pushing themselves this whole time. AVT kids prepare like extreme runners: they learn the basics, then continue to push themselves to improve, listen more closely, and understand more complex speech more quickly. We know it's not easy, even though they make it seem so effortless, and are thinking of G, J and O as they are forced into this very unexpected marathon.

January 14, 2011

F-U-N-D

"Mom, I know some really bad words...but I don't use them."


"There are some different bad words out there. It's good to know them, and know not to use them. What are some that you've heard?"


"This one is so bad, I can't even say it. I'll spell it." (hides head under covers) "f-u..."


("Oh, I guess she does know this one", I think to myself).


"n-d!"


("Hmmm...guess she doesn't!").


It takes a hearing loss to turn a simple rite of passage, like learning swear words, into a lesson in listening and speech discrimination! Hadley is still such an innocent that the worst words we hear in our house are along the lines of "stupid" and "meanie". Up until now, she's typically learned bad words through books ("Damminit!" she muttered one day as she hit her head while getting in the car. "What word was that, Hadley?" "Harry Potter said it."). Our conversations have focused more on being appropriate and proper pronunciation ("The /n/ in 'damn' is silent, Hadley.") But "f-u-n-d"... this one required some further investigation.

I'm still not exactly sure what transpired, but it appears a friend shared the word with Hadley in a typical "what swears do you know?" conversation. Hadley couldn't hear her friend very well (this happened at lunch), and was relying on contextual clues to fill in the gaps. She heard the first sound of the word, flipped through her internal file of known vocabulary, and decided that 'fund' was the swear. She didn't want to risk asking her friend to repeat the word, in fear of being overheard by an adult (so she had heard enough of the conversation to infer that this conversation was headed into dangerous territory). I'm still not entirely convinced the friend herself knew the actual swear, but I gathered enough information to determine that Hadley used the skills she had to the best of her ability to follow along...and yes, to even contribute another word to their lesson in profanity. (Which she knew! Correctly!).

Hadley now knows that the F-bomb isn't a trust fund or mutual fund. Maybe her hearing misled her, perhaps her friend did think that "FUND!!" is what people yell out in anger or exasperation, and possibly it's a combination of the two. At least she won't be telling anyone to "fund off" or "shut the fund up"...whether that way or in its proper form. And I've suggested that the next time she wants to sit down and have a nice chat about all the more colorful words in the English language, she do so off of school property.

January 7, 2011

A new 'do!

Girls these days have a new rite of passage: making a donation of hair for use in wigs. It seems like every month, there's a new friend who is sporting a short hair cut. Hadley deliberated for months and finally made the decision this week to cut it off. Two years of growing ended in seconds as the nearly foot-long ponytail was cut. Hadley decided to donate her hair to Locks of Love, a non-profit organization that provides free and reduced cost hairpieces to children with longterm hair loss, especially alopecia. Her donation is being sent in recognition of a family member with alopecia.

Way to go, Hadley!

The balancing act

There's no getting around it: living life with a hearing loss wears you out. It takes extra energy and effort to process complex language, identify the important sounds over the background babble, and fill in any gaps with contextual or visual clues. Despite the fact that this is the only life Hadley knows, it's still draining: even a long distance runner is exhausted at the end of a long run. There's only so much endurance a person can build.

A challenge is balancing Hadley's energy level with the abundance of activities that are available to kids her age. I am a firm believer in participating in sports and other popular activities when they are new to everyone, and Hadley loves trying out new programs (with a healthy amount of apprehension). Problem is, there are dozens from which to choose! Every few months, we contemplate new activities and weigh them against those she already enjoys or does with friends. It's the normal juggling act all parents do (When will homework be completed? What days are free? Who will drive? How much does it cost? What has to give?), but with the added complication of factoring in Hadley's endurance and energy. I know that if Hadley has a team sport one day, she needs to have the next day be very low key. I've learned that "quiet" activities, like art class, can be scheduled anytime during the week. I've realized that programs that require active listening are best done on Mondays, when she is most rested. Piano lessons are best early in the morning, but the special relationship she has with her teacher is so important that we squeeze in this time as we can. Above all, by 5PM, Hadley's energy is pretty much depleted, having put in a nearly 11-hour day by then. While Hadley's endurance improves as she grows older and develops the skills and strength to manage her day, the expectations rise as well: homework increases; language is more complex; teaching and learning is more auditory-based. What works for her now may not be the case next year. Just when I think we've discovered the best school-activity-life balance, her needs change.

So, the balancing act continues. This winter, Hadley asked to try some new after-school activities, and we agreed to add one film-making class. We're testing out her ability to do something later in the day with ice skating lessons. The next six weeks will be a little busier than usual for her, so we'll see how it goes and adjust as necessary.

January 5, 2011

Preparing to be left behind

Of all the things we prepare ourselves for (ear infections; technology failure; further hearing loss), the one thing that can suddenly surprise a family is when a member of the support team leaves. It can take a long time to build these relationships and trust professionals, for both the parents and children. Once that trust is in place, it's hard to imagine not relying on the team-- harder still to convince yourself that the same level of confidence can exist with someone else.

Over the last nine years, we've had people come and go from Hadley's team due to job change, relocation, medical leave, sabbatical and retirement. In most cases, we've had plenty of advance notice to make our plans and have transitioned pretty seamlessly. We've been fortunate to expand the team to include some really great professionals who have only improved the level of service to Hadley. Here's what has worked for us:

1. We have always worked with professionals who focus on pediatrics within a larger practice that has a commitment to pediatrics. When people have left for other jobs, the practice has hired new professionals with a similar level of knowledge about serving children.

2. We always ask the question, "If we can't see you, who do you recommend in your absence?". A regular audiologist or ENT isn't always available for last minute appointments, so it's always good to have a relationship with someone else in the office. When a leave has been announced, we've always had a fall back person already in place.

3. All good therapies should come to an end. As much as we loved the regular weekly contact with Hadley's cert AVT, we knew the goal was to complete regular sessions by the time Hadley entered kindergarten. Lea and Jim's sabbatical year to improve AVT services in Australia was the perfect push out of the nest for us, cushioned by monthly sessions with their mentee, Carrie.

4. Change is good! As a toddler, Hadley had developed a few behaviors in reaction to some routine examinations. Having someone new took her mind off her fears and helped her overcome her concerns over some of the more uncomfortable procedures.

5. If you aren't feeling comfortable with a new person, start asking around. It's not always worth going to the closest office if you don't trust the professionals there. Sometimes it's better to drive the extra miles to someone you respect rather than stick with someone you endure.

6. Speak up! We're ingrained to not ask personal questions, but sometimes you have to be direct in order to make proactive decisions. How long will the maternity leave be? Is the person returning to a full or reduced schedule? Hopefully, you've developed a good relationship with this person and can ask without being pushy or intrusive...but ask, regardless.

As parents, we're acutely aware of how hard it is to find professionals who are right for our children and circumstances. Our kids just want to feel comfortable at all these office visits, and the personality that works best for them may be different than what works for us. While Hadley agrees with our choices so far, I'm becoming more aware that she feels safer and more confident with some professionals more than others. These are all factors that will become even more important the next time we're jostled out of our happy support team and forced to reassess those upon whom we all rely.