September 29, 2009

Let's Go Crazy*

I'm used to anticipating things that Hadley might miss. Night at the bowling alley? I'll volunteer to help, while watching to see if Hadley needs cues. Assembly at school? Preferential seating up front with a friend or two. Pool party? We'll chat about how to switch between her regular aids and water aids, and how to deal with any problems. Thinking ahead about hearing and listening challenges is second nature at this point, and we just figure out what needs to be adjusted. Sure, Hadley has a severe hearing loss, but she's living a typical life doing typical things with all of her senses.

Every once in a while, however, I'm absolutely floored by something that is so simple, so normal in a regular hearing life that she has missed. A few days ago, I was chatting with a neighbor, talking about the fantastic schoolbus driver that our daughters have. She just happened to mention how her daughter loves the music played on the bus and how she's learning the words to all of these songs. My mind just came to a halt: in over two years of riding on this bus, Hadley-- who loves music, loves to sing, and loves to memorize lyrics-- has never once talked about listening to the radio on the bus. Yes, I know, a school bus is a horrible listening environment for any kid, but wouldn't she have mentioned it at some point? She's jumped off the bus talking about a friend's recap of the latest Hannah Montana show, a joke that was told, who was told to sit down and behave, who has a new WebKinz...surely she would have mentioned a Taylor Swift song or two, right?

So I asked Hadley... a couple of times in different ways over a few days. Each time, the answer was basically the same: she can usually hear the kids next to her, she can hear if someone acts up, she can hear the bus driver call out instructions...but she can't hear the music well enough to make out the words. Since they are listening to Top 40 songs and not the alt kids music we tend to favor at home (ok, yes, music snob), nothing is familiar enough for her to recognize.

Hadley doesn't seem bothered by it (which explains why she's never mentioned anything at all). Truth be told, the music is only played on the 10 minute ride home; it's not a huge deal. But my very first reaction to this was thinking about how we used to beg our bus driver to play a certain radio station and the few minutes of fun we would have singing along until she'd reclaim the dial. At the end of a long school day, wouldn't you want to be in on the fun and not apart from it?

Living life with a hearing loss is all about making the adjustments and finding solutions. What's the challenge here? Hadley doesn't know these songs well enough to recognize them when played and can't hear them well enough to learn them from the bus ride. The simple solution is to learn them in a place where she can hear music well: our car, our house, her bedroom. She is capable of identifying songs she knows well, so she can choose to tune in and sing or tune out and talk. I just added a new station to my presets. We'll see how it goes-- for all of us!

* Let's Go Crazy, Prince & the Revolution: top US single on September 29, 1984

September 3, 2009

Quality of Life of D/HOH Children Study

This email has been forwarded to me several times today from other parents of children with a hearing loss. I checked it out and decided to submit our information for consideration. To learn more and/or volunteer to participate, go to

Project HQL
University of Washington
Box 359455
Seattle, WA 98195

Dear EAA Member,
On behalf of the University of Washington and the University of Colorado at Boulder, I´d like to invite you and your clinic or organization to spread the word to eligible families about our study, Quality of Life of Children and Youth who are Deaf or Hard-of-Hearing (Project HQL). We´re eager to find out how parents of children ages 5-10 and youth 11-18, who are deaf or hard-of-hearing, view their quality of life. The goal of our study is to create a quality of life questionnaire specific to these groups, which will inform service providers, advocates, and clinicians about the unique needs of this important group of children and youth. We´re currently recruiting parents of children 5-10 and youth who are 11-18 from across the country to validate our newly developed survey. As audiologists are instrumental service providers for children and youth who are deaf or hard-of-hearing, we need your help so the opinions of these children and youth are heard. We´re seeking participants with all degrees of hearing loss, educational placements and communication modes. While we continue general recruitment, we find that audiologists are vital for the recruitment of children and youth with mild hearing losses and cochlear implant users, making the cooperation of the audiology community crucial to our study´s success. I have provided a sample of the flyer for your reference. If you would like additional copies or information please contact us via email, phone, or visit our website to complete a request of information form:
Project HQL

We believe this study will provide important information to members of the deaf and hard-of-hearing community, professionals working within that community and our funding agency, the National Institute on Deafness and Other Communication Disorders at the National Institutes of Health. On behalf of the University of Washington and the University of Colorado at Boulder, I wish to express my deepest appreciation for your time and support.
Sincerely yours,
Melissa A. Garafalo, Au.D., CCC-A
Research Assistant
Quality of Life of Children and Youth who are Deaf and Hard of Hearing Project

September 2, 2009

Something Unique

We're getting ready for tomorrow: the first full day of second grade! Hadley had a chance to visit her new classroom today and she was rather comforted by the fact that the room is her former kindergarten room. She also knows quite a few of her new classmates, so is looking forward to getting started. There's still some anxiety, but much more excitement.

One of the things the kids are asked to bring on the first day is something that showcases one of their unique characteristics. I was expecting anything other than the object Hadley chose: her hearing aids. She has never wanted to start the school year off by talking about her aids, but whether it was a result of yesterday's conversation or something else, she'll be bringing in the piece she wrote, "My Life", and plans to show off her new blue/green earmolds with gold glitter, her purple hearing aids, and her brand new earrings (because, after all, they are on her ears too!). She's all packed and ready to go!

September 1, 2009

School Time!

It's a few days before the start of school and I'm in my annual back-to-school rush: restocking Hadley's backpack with hearing aid supplies; making copies of reports and articles to distribute to new staff; picking up brand new earmolds...if only it could be as easy as buying some new clothes and a few pencils

This is also the time for my annual angst over how much to share in advance with Hadley's teachers and new classmates. I have always maintained that teachers need to get to know Hadley first before I come flying in with audiograms and instructions on teaching HOH children. I don't want anyone to read about her and think about what limitations might exist; I'd much rather educate about how far she has come than have to convince anyone that we shouldn't expect the world from her. I have never started the school year by talking to her classmates about what her hearing aids do or answering their questions. That always felt like shining a spotlight on what makes her different instead of letting her flow in the mainstream. Instead, my focus has always been on making sure Hadley can answer questions on her own and can speak up for herself when necessary. So far, so good.

But, each year, some of my favorite parents in the AV world share what they do with their child's new classmates and I think, "Of course, that makes perfect sense! I should do this!". I know that there are some parents who see Hadley's hearing aids and immediately make assumptions (both positive and negative). I also know that there are loads of parents who only notice Hadley's hearing aids later on in the school year and are surprised that I had never said anything. Now that we are using a soundfield system in the classroom, there's an impact on the rest of the students in the classroom, so a part of me feels an obligation to speak up earlier in the year (I didn't think about this until last year at the school's open house, when I overheard a teacher explaining it to another parent who had asked why speakers were in the classroom).

The good news is that with every year, there are fewer people who are meeting Hadley for the first time (the benefit of living in a town where all the kids go to the same schools together from kindergarten on). But, first impressions linger (the downside of living in a town where all the kids go to the same schools together from kindergarten on!).

I've really been stuck on this...until I finally remembered that I could just ask Hadley what she thought. (It took me long enough!). She began to answer me, stopped for a moment, stood absolutely still for a few moments more, then responded, "Why don't we just wait until I see how many kids I know in my class, then I'll let you know."

So, that's what we're doing: waiting. And she'll let me know. Excellent!