Wednesday, November 6, 2013

Meet "Supper Girl"

Phonak gave away free posters of a comic called "Iron Man - Hearing is Believing" a while back. I ordered one and figured on receiving an 8x10 page that would likely arrive long after I'd forgotten ordering it.

I was pleasantly surprised to get huge tube via FedEx, not all that much later, that contained a gigantic poster. In the comic, Iron Man tells a bunch of kids in the school yard that the kid with hearing aids can play soccer just as well as any of them.

Upon Julia's arrival home from school, she saw the FedEx tube and immediately knew somebody got something. I took her to the dining room where the poster covered half of the table. She stood stock still and read the whole comic. I explained how Iron Man came to be so interested in hearing aids. (Or at least how it came to the attention of Marvel Comics - see the Blue Ear story here.)

"I could write a comic strip," she declared and disappeared to her room.

By dinner time she had created the "Supper Girl" comic strip. The artwork is quite impressive, I mean that's one accurately drawn hearing aid! It was several hours before any discussion about the spelling issues. Her comic is a great reminder for me that there are so many things more important than accurate grammar. The confidence of that masked hero is something that can't be taught. She truly is super!

Request a free copy of Iron Man in "Hearing is Believing" at http://www.phonak.com/us/b2c/en/hearing/IronManPoster.html

Wednesday, October 16, 2013

Maybe we've finally figured it out

Posts have become sparser and sparser here at Magic Ear Kids leading me to reflect on why I don't write so much anymore. There are many reasons and I'm quite confident the title of the post isn't one of them.

#1 - Julia is eight. She's going to be nine in March. Long ago it occurred to me that she was eventually going to want her privacy. Over two years ago, I killed my old tell-all blog, Big Teeth & Clouds. That was a big step toward not-having-Mom-share-every-fart-with-the-entire-world. Now it seems a little risky putting our conversations on the Internet. Soon there will be middle school and Google will probably still be a thing.

#2 - Some things are hearing issues, but making a big deal out of it doesn't help. We don't need to dwell in the loss. Five years after getting hearing aids, it seems time to put them in their place. They are a necessary tool. Equipment to be monitored and maintained. They are not our focus.

#3 - The problems we have now could very well be here for a long time. Spelling is hard. Memorizing things is a challenge. Ear molds clog up with wax. Ears get sore spots. Feedback happens. Batteries get lost in plain sight on the carpet. Tubes crack. The school ignores inconvenient portions of the IEP. Things go wrong. We deal with each concern as a family, and I don't anticipate any sudden resolution to these issues. There will be years of grueling work. Eventually there will be spell-check.

Our journey has become rather boring for the reader, but as a Mom, I'm in a better place. My anxiety has gone and even new issues seem less daunting. It took a long time, but we're back to normal. Normal is wonderful, and it has magic ears.


Wednesday, September 4, 2013

The brand new battery storage necklace!!!

Since Julia got her first pair at age 3, I've been carryingsize 13 batteries in my purse. This worked well until she started going out in the world without me! I've put batteries in envelopes to transmit to the responsible adult at parties and Girl Scout meetings, but it's a chore for my daughter to hunt them down and a feat for us to remember to take the pack of batteries home with us when the activity is over. I always mourn the loss of a fresh pack of batteries, those things are pricey!

Now a very grown up eight-year-old, Julia wants to be a bit more discrete about her hearing loss. At the very least, she doesn't want Mom having to give a ten-minute dissertation on batteries, how you'll know they need changed, and the history of hearing loss at each drop off. It would be really great if she could just carry her own batteries! Sometimes, on rare occasions when she has pockets, she carries them herself. (Then we find them in the dryer.) But most of the time we have to look for somewhere to stash them.

Finally, after several years of pondering and a summer sourcing components, I solved the problem! I created a battery necklace for Julia. A small plastic box holds two size 13 batteries on a ball chain necklace that is long enough to hang under her shirt or outside as a fashionable pendant necklace! This gives Julia complete ownership of her hearing aid maintenance because she can change batteries as needed without consulting any grown up. This is a big help now that my third grader SWITCHES classes. I was racking my brain to figure out how to manage keeping batteries in two classrooms. With the necklace, that's another problem solved. It's working so well for us that I'm almost ready to take that spare four-pack of batteries out of my purse!

You can purchase one of these fine necklaces at my Etsy store, http://www.etsy.com/shop/TheMagicEarShop where I'll be adding new styles frequently. Please comment or email me if you can think of a design that would entice your child to wear one of these. One little hearing aid wearer I talked to was pretty jazzed about the idea. I think he would wear a plain white one.

Saturday, August 10, 2013

Doll Hearing Aids

Molly and Kanani pose with Julia after their trip
to the new American Girl store in Ohio.
The American Girl catalog arrives frequently at our house. Too frequently, if you ask me. Julia pores over the catalog and makes lists.

I had mixed emotions when I learned that American Girl dolls could get hearing aids. While I'm thrilled that the dolls can truly be just like Julia, did this mean another trip to the doll hospital for poor Molly McIntyre? Another doll?

After getting a new hair style (bangs), Jules decided Molly was her mini twin and Molly should be the one to get hearing aids. This summer, plans were hatched to travel over three hours to a brand new AG store in Columbus, Ohio. A long drive for an audiologist appointment of sorts.

Molly went bravely into a separate room to have the hearing aids inserted. They drill a little hole to secure the aids. Julia had saved a considerable sum of her own money to get a few coveted accessories she'd seen in the catalog, all for Molly. Poor Kanani, at least she got to come out of the closet and visit the AG store.

Julia asked the first night if Molly should take her hearing aids out. I'm not sure they're the kind of thing that's meant to go in and out. Since Molly's typically a pretty good sleeper, I suggested leaving the hearing aids in. So far there have been no complaints.

Julia is quite happy and I hope that having her truly 'just like me' doll will be more than just a novelty. I hope it will give her confidence and that tiny doll hearing aids will help build hearing loss awareness among other little girls. It can't hurt.

AG hearing aids are $14, a bargain by American Girl standards. Build-a-Bear also offers hearing aids for your plush toys.


Tuesday, May 28, 2013

I had my hearing tested!

Several years ago, when the shock of Julia's hearing loss had finally subsided, I decided that I should get my own hearing tested. I'm in the booth with her at every audiology appointment. I can hear most of the whistles played into my daughter's ears, so I figured there wouldn't be any major surprises. Still, I think it's even more important for parents of kids with hearing loss to be proactive about hearing health. If it's important for the child to hear, it's important for the parent to hear. If it's necessary for my child to wear hearing aids, it is necessary for me to wear hearing aids (if needed).

So I called my insurance and an audiologist. I discovered that my insurance, Highmark PPO Blue at the time, did not cover even a basic hearing test. Making an appointment eventually fell off of my to-do list.

Then, a few weeks ago, I walked into my local Sam's Club and found they'd erected a sound proof booth in the front of the store. "Hearing test, No cost, No obligation" says the flyer. I stuffed one in my purse and promptly waited another two weeks to make an appointment.

They say it takes several reminders to get human beings to do anything. It was finally an email from the Hearing Health Foundation that got me to make that appointment. May is Better Speech and Hearing Month. HealthyHearing.com is donating $1 (for a total donation of up to $10,000) for each person that will pledge online to get their hearing tested. Funds raised support the research of the hearing restoration project.

When I finally made it back to Sam's Club for my own hearing test, it took a total of fifteen minutes. Carilynn, the audiologist, asked me a list of questions. She put a little video camera thing into each ear to check my ear drum. I now have a picture of both inner ears. Inner ears aren't cute, but Carilynn says mine are beautiful. I was expecting the wax, but I have to say I'm a bit put off by photographic proof of all that ear hair!

I went into the booth and pushed a button for each sound I heard. More in depth testing would be done if a person needed to be fitted for hearing aids. My test was the short version.

My audiogram revealed that I have a slight hearing loss at the lowest frequency. Carilynn thinks this might be from noise exposure (perhaps auto racing). It won't cause a problem unless I start to lose the higher frequencies as well.

I showed off my audiogram at home that evening. Julia wasn't very interested. Tim was surprised that the little bit of track time we've had could have damaged my ears. We'll never really know, but noise-induced hearing loss only takes one time. Once the hair cells die, there's no bringing them back, yet.

But with just a few minutes of your time, you can contribute $1 to research that might someday bring back hair cells. Take the pledge. Carilynn at the Pittsburgh Mills Sam's Club is very nice. She'll test you for free even if you're not a Sam's Club member (call 724-274-1748 for an appointment Tuesday through Saturday 10am-6pm). Or find a Sam's Club hearing aid center using their web site. Do it for your health. Do it for magic ear kids like Julia. Just do it!

Wednesday, May 15, 2013

Another Year, Another IEP

There are only a handful of days left until summer vacation. My little girl is graduating from the K-2 "primary center" to the big kid "intermediate center" for grades 3-5. She is eight-years-old. She is going to be in THIRD grade.

By typing these facts, I hope to cement them in my top of mind awareness. Occasionally, I catch myself thinking that she's six.

This school year has gone faster than any other period of time in my life. Months swept by in a blur, and suddenly we were gathered around the IEP table. Three professionals, my husband, and I met in what amounts to the school's supply closet. Our table was jammed in between stacks of books, discarded (mostly broken) chairs, and unused desks.

Having attended a fair number of these meetings in other school districts, I had to laugh. No comfortable conference room here. No secretary offering chilled bottled water. Our school offered only the bare essentials in room that used to be a first grade classroom before budget cutbacks furloughed its teacher.

In spite of our surroundings, we worked as a team and created a good plan for third grade. It includes every accommodation I asked for and does a fine job documenting the highs and lows of Julia's primary school career. She will have everything she needs in the new building.

Still, I left with mixed emotions. IEP time seems to bring out ample negativity even when the meeting itself isn't contentious. Five adults sat around a table and talked about one kid's shortcomings. We glossed over the great triumphs of second grade because that stuff has such a small part in the plan. As a parent and responsible advocate, you can't go into the meeting full of pride and brag about all that your child can do. You have to talk about the places where the kid struggles. You have to bring up the less than perfect parts of the past school year. You have to voice worries about the future.

As I drove home, I wondered if I'm too hard on Julia. I recalled the number of times I said, "she's getting good grades, but..." and "she understands the concepts, but..." and worst of all, "I can't imagine her doing that..."

The morning after the IEP meeting, I got an email from the editor of Gallaudet University's annual publication, The Odyssey.  The 2013 edition has been published. It includes an article I wrote about Julia surfing. Re-reading that article helped me look at the previous morning in a different light. So many adults: parents, teachers, and therapists, have worked with Julia for years to get to where she is now. She has achieved so much, not by ignoring problems, but by identifying challenges and tackling them head on.

It remains my biggest challenge to balance my worries with the knowledge that there are no limits for my daughter. I can't ignore problem areas. I certainly can't let the school ignore problem areas. I have to guide and support and always remember that the work, Julia's work, will pay off in the end.

Thursday, April 4, 2013

Spring Malfunction

Before I begin, I must admit that I've been in a terrible mood for the last three weeks. Like most Pittsburghers, I blame the weather. The weather has been terrible. We've had snow, cold, more snow, more cold. March 20th came and there was no spring, but two thirds of the family is showing spring allergy symptoms. 

So I'm not in a good mood.

This makes it harder to deal with a certain pair of Phonak Naida hearing aids that have been having intermittent failures. This pair has always done strange things. Julia has complained about them playing music (a phenomena I observed to be a series of beeps that made a musical tone lasting about three seconds), having a lot of static, and making noises when touched or bumped. Intermittent problems are difficult. Will it act up for the audiologist? Is it worth the trip? As a family, we narrowed it down to the FM boot. The aids never act up when the boot is not attached. The problems last only a few minutes. There are long periods of time when everything is fine.

We finally headed to the audiologist when our stockpile of ear mold tubing and those little foam microphone covers ran out. The audiologist gave us new FM boots in case a bad contact was causing the problem.

With the new boots, there hasn't been any static or musical beeping. Now the right aid just turns completely off. This does not make me happy.

Twice, the right hearing aid has spontaneously gone completely dead. Both times we changed the battery and everything resumed normal function. Since the right aid is still having problems with a new boot, the hearing aid will have to be sent away to be diagnosed and fixed.

Julia being without a hearing aid is one of my worst fears. She has her old brown eXtra hearing aids, but they don't sound as good as the Naidas. During the musical beeping phase, I had Julia wear one old hearing aid so I could keep the Naida home in it's drying case. She ripped the old aid out as soon as she got to school.

There are forty days of school left and I can't decide whether it would be better to hobble through with the Naida or make her suffer the eXtra. Julia is eight, so maybe I should just leave it up to her. As of this morning, she didn't know what to do either.

The sun is shining today and after a brisk 15 degree start, the temperature is supposed to "skyrocket." Spring is here along with allergy medication and hopefully improved mood and decision making skills. Maybe even reliable hearing aids. Hopefully.

Wednesday, February 27, 2013

Q & A with the Mom of the Blue Ear

A motivated mother can do anything when the health and well being of her child are at stake. The hearing loss community has been abuzz for months over the impressive accomplishment of one New Hampshire mom. When her son, Anthony, didn’t want to wear his blue hearing aid to school “because superheroes don’t wear blue ears”, she made one that did. Her email explaining Anthony's concerns to Marvel Comics inspired the creation of a new comic book character, The Blue Ear.

The Blue Ear poses with Hawk Eye, a superhero who uses hearing aids (left). The Blue Ear using his listening device that can "hear an ant hiccup across the United States." (right)


Anthony, now 5 years old, is the Blue Ear. His journey to super hero fame is well documented. He has a Facebook page. He has met Iron Man. So I was surprised to have the chance to talk to Anthony's mom about parenting struggles and the Blue Ear's future top secret missions.

Q&A with the Blue Ear's Mom

Many parents struggle to get their kids to wear hearing aids. Was Anthony giving you a hard time for a while or did this come out of the blue?

Anthony had been wearing a BAHA softband (bone-anchored hearing aid) on one side. It was uncomfortable for him. He got a Phonak hearing aid in bright blue about four months before this announcement about superheroes. The Phonak aid was comfortable and he was noticing a benefit from it. He wore it willingly for those four months and then decided he was done being different.

At the time, Anthony was going to school with other kids that have hearing loss. It was a big help to see other kids wearing amplification, but we were surprised for him to notice his hearing aid is different at such a young age.

How is Anthony doing now?

Anthony loves being the Blue Ear. He got to meet Iron Man. The whole thing is pretty awesome.

For school, Anthony is wearing the BAHA and the Phonak hearing aid. We find he gets the best benefit with both and that's what he needs in the educational environment. For sports and other activities, he can get by with the Phonak hearing aid. He's now using FM which is giving him an added benefit.

Anthony is noticing the benefit of these devices and that they help. We're very fortunate. I'm sure there will be more challenges as he gets older, but for now things are going well.

What can we expect from the Blue Ear (the comic book one) in the future?

Marvel has partnered with Phonak to create posters featuring the Blue Ear that will help kids feel good about wearing their hearing aids. The goal was to have these posters in every pediatric audiologist's office, but we want to take it even further. We'd like to see these posters on the bedroom wall of every superhero fan.

Marvel comic book characters have always been inspirational for Anthony. Iron Man developed his suit to save his life after a chest injury causes heart problems. Hawk Eye lost his hearing and had to wear hearing aids. These guys have challenges, but they are superheroes first. Our kids are always kids first, no matter what their challenges.



Thanks to Anthony and his mom for sharing this story with magicearkids.org and for creating this character to inspire and support all kids with hearing loss!