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


"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).


("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.