Sunday, November 29, 2009

Books for kids with hearing aids

As soon as we knew Julia was going to need hearing aids, I spent some time on Amazon trying to find a book to explain what was going on. I came across two choices at that time: Cosmo Gets and Ear and A Button in her Ear. I purchased Cosmo and checked the other out from the library.

A Button in her Ear is a good story, but I didn't add it to our collection. The pictures in the book are of outdated hearing aid technology that requires the little girl to wear a necklace contraption and cords that attach the hearing aids. We found it at the local library, read and returned the book.

Cosmo Gets an Ear has great images of over-the-ear hearing aids. Even with up-to-date technology pictured, the book is useless to us because the format is nearly impossible to read aloud. It takes a humorous approach to Cosmo's hearing loss. Each page has multiple choice options for what the character Cosmo is doing or thinking. I've never figured out how to make it flow enough to be a compelling read aloud story. Perhaps for an older kid that reads on their own this book would be helpful. It just isn't appropriate for young kids.

Fortunately, we found two favorites in the books published by the manufacturers Phonak and Oticon for distribution with kid's hearing aids. Having Hearing Aids is written and illustrated by Peter Augustine. Peter was eight-years-old when he wrote this book in 2003. His story exactly mirrors Julia's as he was diagnosed at age 3. He describes himself as saying "weird words" that his "mom couldn't understand." It gives us an opportunity to talk about the time before Julia was aided and how she couldn't learn to talk without her hearing aids. Peter's book is provided with Oticon hearing aids, but I was able to get a copy just by contacting the company. You can print a PDF version of Having Hearing Aids to read until you can get your hands on a bound copy.

Phonak includes their book, Oliver Gets Hearing Aids, and an Oliver puppet with their hearing aids. Oliver's hearing loss is discovered when he is in grade school. The doctor's visits and audiologist booth description are spot on. Oliver even gets earmold impressions made. It's a perfect way to review what is going to happen before an appointment with the ENT or audiologist. Note: Amazon does sell this book as Patrick Gets Hearing Aids ($11.90), but you can get a copy from Phonak for free or click the link to get a PDF.

A follow up in Oliver's adventures is Oliver Gets FM. I sent the print out of this PDF to preschool so the teachers could easily explain to the other kids why they were wearing the FM transmitter. I think it also serves to explain the FM to the teachers!

The books have been helpful in building Julia's understanding of her hearing loss, the hearing aids, and that she's not the only kid that can't hear with her plain ears. They seem to add instant credibility when explaining hearing aids to Julia's friends and classmates. These books offer a great way to inform your family, child, and their teachers what hearing aids are all about.

The books mentioned in this post: Cosmo Gets an Ear by Gary Clemente, A Button in her Ear by Ada Bassett Litchfield, Oliver Gets Hearing Aids, by Maureen Cassidy Riski and Nikolas Klakow, Oliver Gets FM by Maureen Cassidy Riski, and Having Hearing Aids, Written and Illustrated by Peter Augustine.

Update: I found two new books that I have reviewed in two separate posts, Let's Hear It For Almigal and personalized experience books.

Tuesday, November 24, 2009

Daily Life with Hearing Aids

When Julia first got her hearing aids in April of 2008, I had no idea what to expect. I'd never touched or cleaned a hearing aid. I didn't know how to put them in for her. I worried about them constantly.

Now it's just part of our daily routine.

Julia wakes every morning and makes a sleepy trek into mommy and daddy's bed. She lays down and I get her hearing aids ready. Most mornings I still check the batteries. The audiologist informed me that my baby is now quite old enough to tell me when she needs new batteries, but I'm pretty slow to adopt grown-up stuff like battery independence with my only little darling. I have a stethoscope that I attach to each one and say the LING sounds (ah, ee, oo, s, sh, mmm). On school days I attach her FM boots and check the LING sounds with the whole assembly.

I put the hearing aids in for her. I was having her do it on her own with her old ear molds. It wasn't pretty to watch, but she got the job done. The new pink sparkly ear molds are so form fitting that I have to help her again for a while. As with the battery testing, I'm coddling a bit.

The day goes on normally except that she can't get her "magic ears" wet. People look at me strangely when I've got her in full rain gear for a sprinkle. It's also of paramount importance to get them out before a bath or a shower. We took them out to ride Splash Mountain at Disney World. I'm pretty cautious with the things, they'd be gone for a couple of weeks if they had to go for repairs.

She tells me when they give a low battery beep. I have batteries in my purse for when we're out. I left batteries at preschool. There are size 13 batteries everywhere.

At night after stories and prayers and hugs the hearing aids come out. I check the batteries (can't give it up) and put the hearing aids in safely in the drying jar. They get all nice and ready for their next big day of being Julia's ears.

The goal is for her to take over doing all of this on her own. Except for the LING sounds test. I imagine she'll soon even be able to report if they're not working quite right. Writing this all out shows me I should make her hearing aid independence more of a priority. She is growing up!

Friday, November 20, 2009

Our First Visit to the Booth

By the time we made it to the audiologist's booth at Children's Hospital, I had already come to terms with some level of hearing loss. Or maybe not. The thing was, I didn't understand hearing the way I do today. In the time between scheduling the appointment and having it, there was a considerable amount of family discussion.

"Well, she heard THAT," we'd say of some noise. She'd turn her back and I would call, "Julia." She wouldn't even flinch. That was my major sign.

The night before the appointment, I had a heart-to-heart with my husband. I told him that if she could hear normally then we had big problems. Julia was engaged and interested in a lot of things. Talking wasn't one of them. For a year of speech therapy in our home there had been little gains, but on the night before our diagnosis, I felt like I was banging my head off of the wall. She had become completely disinterested.

Julia sat on my lap in the sound proof booth. Our audiologist went into the other room with all of her gadgets and played whirling whistles over speakers. They were very loud in the beginning. When Julia turned toward the speaker that was making the sound, she was rewarded with a little mechanical character that lit up and did a dance.

As the sounds got quieter, I got a heavy feeling in my stomach. She's failing pretty bad, I thought.

But even then I had strange conflicting feelings. She was just a baby (in a month she'd turn 3-years-old). Maybe she just didn't like the dancing bear. My brain couldn't choose which disability I preferred for my daughter: hearing loss or that other thing. The other thing being whatever was keeping her from learning to talk. But maybe there was no other thing, and that was what I held on to.

About now I would like to go back and shake the past me. I would tell her it will be okay, this is going to work out. But that day, the whole thing seemed like it was falling apart. I thought she was healthy and she wasn't. I thought I had done a good job being pregnant and I didn't.

The audiologist leaned into the microphone and told me she was coming over to our room.

I took a deep breath and very specifically warned myself not to cry. "I found a moderate hearing loss in both ears," the audiologist said. There was a lot more information that day. She used little rectangular block headphones to transmit the sound directly to the nerves. She could tell that this is a nerve problem, not some little tube that was too small in my baby's ear. I was told that it is not uncommon for a newborn to pass a hearing screening, like mine did, and then find something later.

She reassured me that we'd found it sooner rather than later. That intense speech therapy would catch her up. I had gone inconsolable and was trying to hide my tears in a tissue.

I couldn't even talk to my husband on the drive home. Saying it out loud made me weep so badly, I thought I would probably wreck the car. I whimpered that I would just talk to him when I got there.

The coming months were tough. We scheduled an ABR test and had to cancel it due to an ear infection. In an Auditory Brainstem Response test, they sedate the child and play a series of clicks while measuring brain activity. It is the definitive hearing test before they will dispense hearing aids for a child. In the wait for the ABR we were still debating the results of the booth test. I was pretty confident, since I was there, that the audiologist knew what she was talking about.

The results were confirmed. As Julia has grown, she does more and more "big girl" testing in the booth. She's identifying pictures to show how well she can discriminate sounds. She's still listening to those whistles, but now she feeds zoo animals. "Give the banana to the monkey," we'll prompt her.

She's not great in the booth. I've never seen another kid do it, so maybe she's a rock star in there. But she gets bored with it. I feel incredibly nervous watching her, just hoping that nothing turns up to indicate a progressive loss. But that is the power of the booth. Every six months it gives us good news, or not. We go back on Monday and hope for more good news.

Sunday, November 15, 2009

Squeaky Old Ear Molds

My least favorite part about my daughter’s hearing loss (other than the obvious fact that she can’t hear with her plain old ears) is ear molds. Ear molds are the slightly pliable molded part of the hearing aid that goes in the ear. They must make a tight seal that doesn’t let any feedback into the ear or the hearing aids give a nasty ear-splitting squeal.

For the first several weeks of brand new ear molds, they fit so good and tight I can hug her against my shoulder and the hearing aids don’t make a peep. As they shrink (or perhaps her ears grow) even cupping a hand over her ear will result in a shrill screech. I would rush to replace the things at that point, I do so love hugging and cuddling, but it isn’t time just yet.

The next step is random squealing. Eventually, from a growth spurt or the time the ear molds have spent dehydrating in the drying jar, the ear molds won’t have that super snug fit. They will cause the hearing aids to squeal without reason. They will cause the hearing aids to squeal because I’ve had the audacity to touch my daughter’s hair. They squeal and squeal.

To stop the squeals, we visit the audiologist who is always able to see us at a moments notice. Julia is a superb patient. She allows her ears to be filled with yellow-green goop. The new ear molds are mailed directly to our home. Last week she got to pick her own special color for the first time. Up until now she’s always had clear ear molds. She picked light pink with sparkles.

The wait with those old, squealing, gross looking ear molds is nearly unbearable. I checked the mailbox everyday with great anticipation only to find the things took more than a week to get here. There was no mail on Veteran’s Day, but we needed those ear molds!

I wish I could know exactly one week before they go bad. I could have the new ones waiting at the first squeak. Or perhaps just new ones every two weeks would work, for the cuddling.

Thursday, November 12, 2009

The FM fight

In the time since Julia’s hearing loss was diagnosed I’ve learned much about assistive technology. Here in PA, the county provides her with an FM System that transmits the teacher’s voice directly to her hearing aids. The teacher wears a necklace-type transmitter that they simply power ON to use. It’s handy in noisy classrooms or when they sing songs with background music. It really helps her. Unfortunately, a great deal of my newfound knowledge pertains to the resistance/inability of preschool staff to use the technology.

In our last preschool, I could find no other excuse than the age of the staff. There were three of the most kind, attentive, wonderful women in her classroom every day. They seemed to go the extra mile for the kids. They just couldn’t figure out Julia’s FM system. The thing has one button. I showed them how to use it. A hearing support teacher showed them. They didn’t think she needed it. Finally, I threatened that if they couldn’t figure it out, I would take her to a new school.

Now we’re at a new school in a new county. The teacher, a former second grade teacher, was quite familiar with FM. She’s used it before. Everything should be copacetic, or so I thought.

Last week, I picked up my lovely daughter and she says, “Mommy, what was that sound?” I hadn’t heard anything. “I didn’t hear anything, sweetie. How was your day?” I asked. “It’s my FM,” she says, very matter of fact. I look in her backpack that she had just pitched onto the front seat of the car. There inside is her FM packed inside a freezer bag, still powered on. Way to go new preschool!

Now that she’s older, these inattentive dolts give her an opportunity to practice her self-advocating skills. I told her to remind the teachers to turn off the transmitter at the end of the day. She gave me a whole breakdown, “Mommy, when it has numbers it’s on. When it has no numbers, it’s off.” Just listen to the four-year-old, everything will be okay.

Thursday, November 5, 2009

Speech Therapy Graduate

Just over eighteen months ago, Julia was fitted with her two hearing aids and the world of sound was turned on. We began, the very next day, with intensive speech therapy to help her battle back from the significant language and articulation delay the hearing loss caused.

I drove her to Children’s Hospital’s North campus twice per week for over a year. Every sound she’s learned has been drilled and practiced in the tiny office of her speech therapist. On a few occasions, I would observe through one-way glass with headphones to hear their work. It never failed to make me feel like crying. Whether she was making progress or stalled in a dreaded plateau, the feeling of watching her in that little cube laboring over what should have come without notice, it made me sad.

About six months ago, her therapist was coming out after each visit with reports of how fabulous Julia was doing. In structured activities, her articulation was perfect. We decided to drop to one day a week, Wednesday.

Yesterday, our weekly journey to speech therapy ended. I was a little misty-eyed saying goodbye to our terrific speech therapist that has helped us so much in our most difficult parenting hurdle. It’s hard to separate the trauma of a change in a long-time routine from the joy of knowing we accomplished just what we wanted to. We achieved our goal – we caught up to normal in time for Kindergarten. We did it!