Saturday, August 16, 2014

The Ear Play

We were first introduced to the "ear play" by an educational audiologist when Julia was in Kindergarten. At the beginning of that first year, the audiologist spent about thirty minutes with the class. She explained hearing loss and then had the kids act out the parts of the ear with props. It was a big hit with the kids. Julia's Barbie dolls played school for a few months after that. They always got a presentation on the workings of the ear.

Julia is going into fourth grade this year and for the first time I'm not even going to send the hearing loss story books with her. She tells her own story. She's also an expert on the parts of the ear. We've adapted the ear play and created our own props so we can teach kids about hearing. For typically hearing kids we point out why its important to protect the hearing they have. For kids with hearing loss we can talk about the causes of deafness. It's an important topic for everyone and there's no better way to start the conversation than with a bit of hands-on exploration and acting.

The Props and Role Assignments

The Sound

The sound is quite important to the play. Represented by a ball, the child holding the sound has to pick the sound: a word, a stomp, a clap. Any appropriate noise will do, but this is important because the sound does have to make it all the way to the brain.

The sound can be any ball. Tennis ball size up to a softball will work well depending on the size of your other props.

The Pinna

"Pinna" is the fancy name for the external part of the ear. It's job is to catch the sound and so we represent it with a baseball glove. After all of the parts are assigned, the first kid will say the sound and toss the ball to the second kid. Each child passes the ball down the line and acts out their function as a part of the ear. The pinna is easy, they just have to catch!

This is an adult softball glove. A child's baseball glove would work too.
This is an adult softball glove. Any ball glove will work.

The Ear Canal

Next comes the ear canal which is where ear wax is made. The ear canal also houses that pesky ear hair. I like to engage the kids in a conversation about those ear extras and ask whether wax and hair is a good thing to have in your ear. They always say "no" and they are always wrong. Wax and hair protect the inner ear from debris (Julia loves to say bugs that might crawl right in). The pinna passes the sound to the ear canal so the ball should fit through the canal.

This is a Quaker oatmeal container with both ends removed, covered in white copy paper, and colored by Julia. At a library program a little boy approached me after the play and told me that being the ear canal was the most fun he'd had all day. So it's good stuff, the ear canal!

The Ear Drum

So far the sound has just been getting directed into the ear, but now the ear drum, in addition to separating the outer ear from the inner ear, vibrates. The kid with the ear drum can hold the ball and beat on the drum or some like to beat on the drum with the ball.

This ear drum is an Utz cheeseball container. I've also used a spin drum handcrafted with a dowel rod and a portion of a Quaker oatmeal container. If you're really fancy, you might have a real drum. Anything that you can bang on works.

The Small Bones

These are the very smallest bones in the human body and they vibrate. The small bones child should shake all over when they get the ball. Commonly called the hammer, anvil, and stirrup, you can get the kids to take a stab at the scientific names.

Using a Google image search you can find many pictures of the small bones. I chose this one because it's pretty clear and simple. I attached it to half of an old file folder. Lamination would be a nice touch.

The Cochlea

Our play skips a couple of parts: the Eustachian tube (because we don't want to go throwing the ball down there) and the semi-circular canals/oval window (because I'm not training ear surgeons). The oval window should have been included as a round picture frame or even an embroidery hoop, but I just didn't put it in. So we move on from the shimmying small bones kid to the mysterious cochlea. In the mysterious cochlea those vibrations are converted into electrical impulses by millions of tiny hair cells. When the cochlea kid gets the ball they can act mysterious or in many cases, just hold the ball until it's time to pass it off.

Julia crafted this cochlea with two and a half turns out of pipe cleaners. I tied a bit of yarn around it to make it stay coiled.

The Auditory Nerve

Carrying electrical impulses to the brain, the auditory nerve is the last prop in the play. One or two kids can hold either end of a piece of string or yarn.


The Brain

The lynchpin of the whole thing is choosing an attentive brain. This person must carefully listen to the sound because when the ball finally gets to them, it's their job to repeat the original sound. The whole process is just no good if the brain can't make sense of it!

The Play

Once all of the actors and props are explained and in place, guide the ball on its journey and help the kids remember their action.

Additional Discussion

The ear play is a great springboard for further discussion about protecting your hearing and the different types of hearing loss. Including some additional discussion, this play takes about fifteen minutes. Lots of great resources for typically hearing kids can be requested free of charge from the National Institutes of Health Noisy Planet campaign. It's also a great activity to accompany reading a book about kids with hearing loss. Scholastic has a printable worksheet (shown below) that makes a great takeaway. When cut out and folded it makes an accordion style ear picture.


Sunday, August 3, 2014

Surf Camp for Kids with Hearing Loss

It must have been about a year ago that I first learned of Indo Jax Surf Charities from a Facebook post. The Wilmington, NC based surf school provides a series of surf camps for kids with hearing loss, visual impairments, autism, and other challenges. Given Julia's interest in surfing, I began stalking their website for information on this summer's camp which is offered free of charge.

In January the schedule was posted and I began planning our vacation to Wrightsville Beach. I need not have been so diligent (I might have placed a few phone calls) about securing Julia's spot in the camp. The owner, Jack, told the crowd of parents that it's very important that the surf school never has to turn kids away. Later this summer, 60 kids will take part in the autism camp. And I was worried that all the spots were going to be filled!

Julia and fourteen other kids with varying levels of hearing loss gathered at Mallard Street beach access #10 for several two hour long sessions in the water. Instructors outnumbered participants and it soon became apparent that there was no need to worry about sending our little girl into the ocean. These guys, already having spent about eight hours in the ocean, were as attentive as Tim and I are with our own kid. As soon as Julia was off the board her instructor, Matt, was diving toward her. There was never a moment when any child was left to struggle even for a second. Parents walked back and forth on the shore, following their kids as the waves carried them down the beach.

Julia's surf instructor, Matt, helping her secure her ankle strap.

Pure joy!
Surfers have long believed that theirs is not just a sport, but a transformative life event. Conquering the ever changing ocean instills a confidence unmatched by other pursuits. I can see it in my daughter, her pride in standing up time after time. She's living a life without limits and it's never more evident than when she's out on the water. As inspiring as it was to watch my own child, Tim and I joyfully watched the other kids conquer their own challenges. By the end of the week, every kid was riding waves and their smiles were infectious.

How You Can Get Involved


Wrightsville Beach is a great place for a family vacation. If your son or daughter has hearing loss and has ever thought of surfing or even if it's been the furthest thing from your mind, check out this program. It's a once in a lifetime opportunity! Camps for kids with visual impairments and children with hearing loss were sponsored by the Helen Keller Foundation and Alert Tile. Individual tax deductible donations are accepted through the Indo Jax Surf Charity web site or by mail.

Friday, July 11, 2014

Waterproof, but not entirely swimmable hearing aids

Julia loves to swim. We first put her tiny baby toes in the water when she was four months old and she's been a fearless diving ring seeking missile of a child ever since. Her first swimming lessons were already scheduled when her hearing loss was discovered. From that Water Tot program on, we've been removing her hearing aids for swimming and carefully protecting them around other sources of moisture.

Baby Julia's first "swim."


The Phonak Naida aids aren't quite as sensitive as the first pair of hearing aids Julia was prescribed. These ones are classified as "water resistant" which gives her the freedom of wearing them when her hair isn't completely dry. Any spray park, pool, or water balloon fight action has to be done unaided and communication becomes a major issue.

We've been looking forward to waterproof hearing aids. Technology improves quickly and we started seeing cochlear implant kids swimming with their devices last summer. We were jealous.

Then we started seeing ads for waterproof hearing aids.

Our audiologist advised that the claims of these new aids were perhaps a little exaggerated. Phonak Nios H20 hearing aids require a lot of maintenance after every exposure to water. I don't feel comfortable with my daughter swimming in her every day hearing aids. We needed to buy a second pair and had some difficulty figuring out how to do that for a pediatric patient.

So we waited.

This spring, a new round of research ensued as we anticipated swimming season. My husband found Siemens Aquaris aids with their IP 68 rating which he fully understands because he's an engineer. This time around we even found a pediatric audiologist that would fit Julia for the aids. So this spring we embarked on a six week trial with waterproof hearing aids.

Julia swimming in her Siemens Aquaris Hearing Aids on what just so happened to be the last
time they really worked properly.


We don't have them anymore.

From the beginning, the aids were plagued by frequent shut downs. We took them off of Julia and dried them, opened the battery door, and messed with them to get them to power on again. Sometimes they would be down for 15-20 minutes. On a swim trip with her Girl Scout troop, Julia took it upon herself to open the battery doors. In the water. She eventually decided she was happier without the hearing aids and swam for most of that day without them.

The audiologist (not our regular audiologist) indicated this was not normal performance for the instrument. We sent the aids back to Siemens for repairs. They replaced all of the guts and reported that there was evidence of water getting inside from opening the battery doors in the presence of water. Surprise! We started a new six week trial and were instructed to pat the vent on the bottom of the batter door to dry it. This would allow the battery to breath and allow the hearing aid to turn on again. There was to be no opening of battery doors with wet hands or in the pool.

This experience with all of the shutting down led to extensive research about hearing aid batteries by my husband, the resident scientist. He learned that the size 13 batteries we've been using for all these years are zinc air. This means the batteries need air to perform a reaction that creates the power needed to run hearing aids. We noticed for the first time ever that size 13 batteries have a little pin prick hole on the top. The sticker that comes on new batteries is keeping this hole closed, preserving the battery's power until it's ready for use. Some manufacturers recommend removing that sticker for a few minutes before putting the batteries in hearing aids. We've never had a problem with that, but a waterproof hearing aid isn't letting the battery breath when it's under water. Tim developed the hypothesis that these aids wouldn't shut down if we could use something other than a zinc air battery. He found rechargeable batteries that are nickel metal hydride and don't need air to work. We had hopes this would be our fix.

So we tried again, very carefully, to swim with these hearing aids. The audiologist told us that Siemens does not endorse, recommend, or support the use of any rechargeable batteries in these hearing aids. Tim put the rechargeables in and the hearing aids turned on and worked for a whole day on dry land.

Problem solved?

No. That first time was some kind of fluke because on subsequent attempts, the hearing aids wouldn't power on with the rechargeable batteries. At least not every time. It was intermittent.

So that was a bummer, but we got one day at the pool with zinc air batteries that was pure bliss. Everything worked perfectly. Julia could hear, it was relaxing and blissful and everything we dreamed it would be. The aids shut off about four times, but we patted the special spot dry with a towel and continued about our day.

And that was it. Our one great shining moment. Julia got to swim three more times with the waterproof hearing aids. Shutting down became the least of our worries as constant debilitating feedback and distorted sound became the chief complaints. We found ourselves spending more time messing with the hearing aids than having fun in the pool. Julia decided that she was better off with no hearing aids at all while swimming.

The Siemens Aquaris aids packed up and ready to be returned.


Now we wait again for a hearing aid that is not only waterproof but entirely swimmable. The Siemens Aquaris aids most certainly are waterproof. You can dunk them in water and they still work flawlessly. Julia just spends too much time under water (they advertise these to be used for 30 minutes of submersion up to 3 feet deep) and perhaps she would do better if there was a pair of waterproof aids available in what they call "super power." At Julia's level of hearing loss, these aids were at full gain in the high frequencies. That means they were turned up as loud as they could go. Perhaps that had something to do with the performance issues.

It was a disappointment, but we learned a lot. I feel confident things are moving in the right direction. If not, maybe Julia won't always be so fond of being under the water. She might some day conquer a swimming pool the way I do: jump in and then shoulders up for the rest of the day. These would be the perfect device for that kind of pool trip.

Thursday, May 15, 2014

The Lifetone Safety Bedside Fire Alarm

Getting a smoke alarm for Julia has been on my list of things to do for quite some time. We don't currently leave her alone in the house, but it occurred to me that before long she'll be a teenager sleeping until noon and I might want to start my day before that. It will be necessary for her to independently wake up in case of emergency.

Much to my surprise, we were invited to sign up for a free Lifetone bedside fire alarm at a picnic for the Children's Hospital of Pittsburgh Hearing Center. A local Boy Scout is working toward his Eagle Scout Award. He raised money to provide about sixty alarms for deaf and hard of hearing children in the area.

Just before Christmas, we received the bedside unit.

Not just a smoke alarm, this thing tells the date and time and acts as an alarm clock.

And the bed shaker.

This little disk shakes the bed so hard Julia could be thrown out!

This alarm does not detect smoke or fire on its own. It monitors the home for the other alarms. When it detects that specific sound, it triggers a 90dB sound as well as the bed shaker and a giant flashing display with the word "FIRE" in all caps. The household smoke detectors have to be T3 which means they give three tones then take a break. The Lifetone unit recognizes that pattern.

We unpackaged the new unit and followed the quick start guide. You simply plug it in and hit the test button on the nearest smoke alarm in the house. Our house alarm screeched. The Lifetone did nothing.

Turns out our existing smoke alarms were not T3. Our house is about seventeen years old. Smoke alarms, I learned from Google, should be replaced every ten years. We were overdue and I wanted the kind that are both hard wired and battery. For some reason I think my house is more likely to go up in flames when the electricity is out. This is probably irrational, but I still like a battery in my smoke alarm.

Our new, T3 smoke alarm.


After replacing all of our old alarms, the Lifetone worked flawlessly. It gives an added thrill when my kitchen activities inadvertently set off the smoke alarm on the first floor. The new alarms communicate with each other which in turn sets off that 90dB alarm and bed shaker. It's a big to-do when mom burns a pizza crust.

Julia wanted to try the alarm clock so we set it one night. I went into her room a few minutes before it went off that morning to see what would happen. When the alarm started the bed shook so hard she rolled out and went stumbling away immediately. I laughed. It looked like she'd been ejected from the bed. We tried it on a subsequent morning and she was already immune. The 90dB horn blared, the bed shook, and she didn't even stir.

So I think we need to schedule a middle of the night fire drill or consider training her to wake up for that sound. But having the Lifetone unit is a step toward peace of mind. I like that she'll be able to take it with her if she ever leaves home. Right now, we have it on good authority that she'll live with us forever. But, you know, it's a good option just in case.

All of the details on this alarm are available at http://lifetonesafety.com/

Sunday, March 23, 2014

A Senior Citizen's Wish to Learn ASL

84-year-old Jean Cummings is proving that it's never too late to learn a second language. A resident of Devonshire of Mt. Lebanon, an independent and assisted living community, Jean has been taking ASL classes from the Center for Hearing and Deaf Services in Pittsburgh. The classes were made possible by a partnership between Brookdale Senior Living and Wish of a Lifetime. Jean is the mother of four children, one of which had hearing loss. She regretted not learning ASL before her deaf child passed away at a young age. 

Now Jean (pictured below in navy blue) is inspiring fellow residents and staff while she pursues her goal. “Jean is an inspiration to our other residents as well as our associates,” said Sara Terry, Vice President of Customer Experience for Brookdale. “She has an impressive history of volunteering throughout her life and serves on the resident council at Devonshire of Mt. Lebanon, so it’s exciting to give back to her. We are very happy that we have been a part of making this important personal goal an accomplishment for Jean.”

Jean Cummings is learning sign language and inspiring others to do the  same, thanks to Brookdale and Wish of a Lifetime.

Jean's daughter and great-grandson have also learned basic sign language, so the family will be able to practice together. She hopes to use ASL to communicate with the Deaf community and that it will help friends in her own community that have difficulty speaking by providing them an alternate means of communication.

More information about Brookdale and Wish of a Lifetime™...

Brookdale Senior Living Inc. is a leading owner and operator of senior living communities throughout the United States. The company is committed to providing an exceptional living experience through properties that are designed, purpose-built and operated to provide the highest-quality service, care and living accommodations for residents. Currently the company operates independent living, assisted living, and dementia-care communities and continuing care retirement centers, with more than 650 communities in 36 states and the ability to serve over 67,000 residents. Brookdale is committed to providing exceptional living experiences within properties that are purpose-built, designed and operated to help residents live well while achieving an Optimum Life®. Brookdale Senior Living communities provide a daily experience of programs, services and care that are unique as a result of the collective talents and inspiration of the residents, their families, and its associates – demonstrating Brookdale’s promise of “Our People Make the Difference.” For more information, visit http://www.brookdaleliving.com.

Wish of a Lifetime™ fosters respect and appreciation for deserving seniors by fulfilling their life-enriching Wishes. Founded by two-time Olympic skier, World Cup gold medalist, entrepreneur, and former NFL football player Jeremy Bloom in 2008 in living honor of his grandmother, Wish of a Lifetime encourages the public to take an active role in granting Wishes through its Wish Connect program. Wish of a Lifetime has made 840 Wishes come true for seniors in all 50 states and the District of Columbia. 93 percent of Wish recipients stated they felt their quality of life improved after having their wish granted and 76 percent said they felt their overall health improved after experiencing a Wish. Learn more about #WishConnect, our volunteer program to help fulfill a senior’s wish or visit www.seniorwish.org

Sunday, March 9, 2014

Slowly Learning ASL

Our family still hasn't made much progress with ASL. There was a mom-initiated push after the conclusion of my ASL 1 (or was it 2?) Community College course. I had about 200 signs down pretty well at that moment and wanted to teach them to the rest of the family.

It didn't take.

It's a shame really. I wish we had a better way to communicate when hearing aids aren't an option. At this point we have a few gestures that everyone understands to mean certain things. Julia can hear loud voices at close range well enough to get by. So we do that, letting the sign language and cued speech fade from our memory. The signs for "yes" and "no" are surprisingly useful. We get a lot of mileage out of just those two.

Still, we're trying to learn more in spite of abounding excuses.
The home screen of the ASL Story App, eMotion Stories
Home Screen of the eMotion Stories App
Our main instructor at this point is the iPhone/Pad. There are several great apps: iASL, (unfortunately, iASL is no longer in the app store) MarleeSigns, and ASL Coach. We use these as occasional time killers and to try to spur our learning.

There are also web sites, YouTube channels, and a new iPad app with ASL storybooks. These are an excellent option to build vocabulary for early ASL learners (like us) or to progress toward fluency for families that have chosen ASL as their child's first language. The eMotion Stories App is free from the iTunes store and includes the Ugly Duckling story. Goldilocks and Little Red Riding Hood are available for $3.99 each.

Each sentence of the story is highlighted while a video of a woman signing that portion of the story plays. There is a setting to display the book with or without the ASL video. You can also change from English word order to ASL word order (there's a big difference) so you can get a better idea of forming sentences that are correctly structured in ASL. Another section called "Word Play" includes a variety of signs to build single word ASL vocabulary.

The eMotion Stories app is worth checking out even just to expose yourself and your child to the artfully expressive world of ASL. The signs for a "very different, very big egg rolling down a hill" are much more entertaining than the printed sentence alone.

Monday, January 6, 2014

Walt Disney World Reflective Captioning

Thanksgiving 2013 found our family crossing something off of my personal bucket list: Disney at Christmas. Ever since seeing an HGTV special on decorating the Magic Kingdom, I've wanted to go there. It was amazing! The castle covered in white lights was everything I dreamed it would be.

But there's only so long you can bask in the glow of Cinderella's castle. We spent time visiting other Orlando attractions as well as Hollywood Studios. It was there that we saw Fantasmic (billed as a "nighttime extravaganza") for the first time.

Using a combination of park maps and apps, we found that Fantasmic offers reflective captioning during the performance. We inquired at the entrance and were personally escorted by a staff member that set us up with the device.

Reflective captioning uses an acrylic glass panel to reflect the captions which are displayed (backwards of course) on a digital sign at the back of the amphitheater. We were seated in the "Mickey Mouse" section which was directly in front of the captioning display. Unfortunately, the staff member told us that we had to sit at the far end of the row. This placed a large pole between us and the caption display. Understanding, as we do, that a reflection requires a clear view of the thing you mean to reflect (you can't see your face in a mirror if your hand is in the way), we were skeptical. We had to wait to get it set up though because leading up to the show the screen was completely blank.

Once the show started, we scrambled to align the glass with the screen. We had to shift down the row to get that pole out of the way. It was a bit difficult as a parent because the reflection was only visible for our daughter. Sitting next to her it looked completely blank. It was a touch stressful!

After proper alignment was achieved, it worked wonderfully. Julia was able to understand parts of the show that were even a bit too garbled for her typically hearing parents. I heard Tim ask, "what did she say?" once during the show. Julia knew.

The next day in the Magic Kingdom, we again used reflective captioning for Mickey's PhilharMagic. We were again seated on the end of a row which put us in rather terrible seats for the 3D show. Once again, the screen was blank up until the show started. We hurried to set it up once the show began.

All in all, the reflective captioning was a great benefit for these shows. I'm not sure any of us are meant to understand Donald Duck, but according to the captions he is saying real words. My main suggestion to Disney would be to have a clear line of sight between the guest's seats and the caption screen. Also, it would be great if the screen could display something, even just an asterisk, to be lined up before the show starts. It's Disney magic - we don't want to miss a second!

A complete list of Disney's hearing services shows that they also offer handheld captioning devices. I'm a bit bummed we didn't know about that at the time. We'll definitely give that a try next time!