Sunday, December 27, 2009

Still playing our favorite listening games

The first informational packet from our audiologist included the web address of the John Tracy Clinic in Los Angeles, CA. Hungry for support and resources, I eagerly enrolled in their ten-session distance learning program.

Each month, I completed an online questionnaire and printed another packet that helped me decode the mysteries of my daughter's hearing.

At the end of each lesson is a section of games and activities. It was John Tracy Clinic that prompted us to write our first experience books, Catching Lightening Bugs and Watching Daddy Race. They had us playing "will it float?" to expand vocabulary. They helped me incorporate sound and listening skills into each day.

We still play variations of our favorite game from the JTC preschool program: freeze dance. Tonight it was more of a hot potato game while I played the piano. All versions include stopping an action when the music is off.

This distance learning course was a terrific resource during the first year after my daughter's hearing loss diagnosis. The variety of games either enhance language or help kids gain listening skills that will help them locate and identify sounds. Plus freeze dance is good family fun - you just have to be doing something weird when the music stops!

Sunday, December 20, 2009

(Mis)understanding Hearing Loss

Hearing loss has been difficult to explain to the people around my daughter. I rely heavily on my own past perceptions of the hard of hearing. Before I became educated and intimately acquainted with the workings of the ears I just didn't understand much about hearing.

Before Julia, the only hard of hearing person I knew was my grandfather. His hearing was destroyed during World War 2. He has hearing aids that he won't wear. Our communication with him consists of yelling at increasing volume and repetition.

Seeing hard of hearing older folks made me think that hearing was sort of "on" or "off". Grand pap used to hear, now he doesn't. Everything needs to be louder. When Julia was a baby, I knew that she could hear because she responded to some sounds. I had no idea of all of the things she wasn't hearing.

The first thing the audiologist showed us after the testing was conclusive was the "speech banana". This was a confusing bit of information at first. I remember feeling weepy when I saw that whispering and birds singing were so far out of her range. I studied the chart and tried to figure out where Julia's speech approximations came from and how we took so long to diagnose the hearing loss.
The banana shape encompasses all of the speech sounds. Different letters are marked on the chart. Normal hearing is represented by the dashed line at the top of the banana. Taking Julia's 55 dB loss as an example, all of the speech sounds are above that mark. Theoretically, without her hearing aids she can't hear any of those sounds.

Things louder than 55 dB like a dog barking or a piano would be accessible for her without hearing aids. But the tricky part is that it isn't so cut and dry. She wasn't missing all language and hearing dogs barking consistently. There are just too many variables to figure out what her world was like before the hearing aids.

At this point, the 55 dB loss is "corrected" by hearing aids. Aided, Julia is hearing at the dashed line above the banana. It's still not as good as normal hearing due to background noise and other interference that I will never understand. This is why her teachers will be compelled (by me) to give Julia preferential seating and establish eye contact when giving instructions. There will be additional effort to overcome the imperfections of the aids.

Educators still ask, "can she hear me?" They see the hearing aids and think she's hearing nothing. I can show them speech bananas and explain listening bubbles, but my biggest fear with moderate hearing loss is that the school will just ignore it. The hearing aids do get her to that dashed line after all. So my husband and I remain geared up for a long school career of advocating for our child so that her disability never has a chance to interfere with learning.

Sunday, December 6, 2009

Constant concern in an ear-centric household

During preschool on Thursday, I got a phone call. Julia's hearing aids were beeping. There was palpable anxiety in the voice of the go-between chosen to call mom for the teacher. I told her there are batteries in the classroom. I told her where the batteries are located in the classroom. I tried to calm her a little by explaining how to open the battery door. I gave them the option to call if they couldn't perform the operation and I would drive back to school and do it.

They never called back. They were able to figure it out. Julia gets in the car after school with the story already barrelling out at me. They changed my magic ear battery! Just the left one! I checked and graded them a "B" on putting the aid back in for her. No one gets all of the nooks and crannies lined up like mama does.

This is the first time we've had one go down when I wasn't around. She survived.

But a related issue has popped up since our last audiologist appointment. The result of that visit on the Monday before Thanksgiving was that Julia is having fluctuations of 5 to 10 dB at a few frequencies. Next time we have to make her wear the ear plugs she despises to try and get consistent readings. For the last three appointments, at Julia's request, she's been wearing headphones. The audiologist thinks this is messing us up. Thankfully, she believes the hearing is stable, but perhaps the headphones are shifting and impacting the results.

The audiologist took the hearing aids for a long time to check the programming. She returned them to us with "fresh" programming and explained that tweaking the programming each time can cause "compression ratios" and stuff to get messed up. She noted that we might hear a difference during our listening check.

I thought that I couldn't possibly notice a difference. I just confirm that they're on and don't sound crackly. But they sound wonderful. Clear and maybe louder and just plain better than before.

Since the "fresh" program we've had two sets of batteries die after only three days. Usually batteries last for at least two weeks. Occasionally we come across some wonder batteries that will last a month. Three days is not a good lifespan.

The FM will draw more power, but if that is the case we should have been seeing a problem since the start of school. We're left to wonder about the super-clear sound being some kind of hyper-power drainer. And my battery tester doesn't really work so what if Julia is false reporting low battery beeps?

All I think about is ears.

Then at bedtime Thursday night, her right ear was hurting. Ear pain about a week after a mild cold. Ugh! The next days found me with my head cocked, listening intently for the tell-tale slushy speech. Thankfully, the pain was a fluke or went away, but I'm still worrying over those ears.


Look for my article What Works at Home? Guiding Your Child's Speech Development in the Nov/Dec 2009 Volta Voices magazine (available with your AG Bell membership)!

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!

Monday, October 26, 2009

Trusting your ears

I observe my daughter more as a speech language pathologist than a mom. I have no formal training in that capacity, but I've been the leading advisor to the educational team. I take the responsibility very seriously. She's achieved her speech goals and the time is coming when I'll have to let go of analyzing her listening/speaking skills. Just not yet.

I've stumbled on a a new problem that will probably self-correct, as many do. She is over-confident in her hearing. She hears something and that is what was said. She'll even argue with me now. "Mommy, I heard you, you said..." She lacks the experience to match up a half heard word to the list of possible choices.

This came to my top-of-mind awareness on Thursday when she met a little girl on the playground. I could hear my Julia say, "Harmen, that's an interesting name." The girl's name was Carmen. Julia is growing up in a new age where someone probably has named their child Harmen, but it occurs to me that maybe she doesn't question what she's heard because she still thinks any combination of consonants and vowels can be a word. She might not know what it means, but it could be a word.

Yesterday she was repeating the instructions on the GPS. "Turn right on Stupid, Bill, Bike," she said. "No sweetie, it's Steubenville Pike," I tell her. "Stupid Bill, PIKE," she says.

We're very fortunate that Julia's hearing problem is just a matter of volume. Her scores have always been perfect on the sound discrimination tests she takes at her audiologist visits. There is no distortion when her hearing aids amplify sound. The current issue seems to be more of a social conditioning problem.

So now I'll set out to gently draw her attention to situations when it's tough to hear all the sounds a person is saying. We'll continue to teach her to ask someone to repeat what she hasn't entirely heard. And I'll hope not to destroy her confidence in her hearing ability.

Tuesday, October 20, 2009

The constant talking phase

When Julia was diagnosed with hearing loss, those close to me tried to pull me out of my devastation by saying, "some day, you'll beg her to be quiet." I would smile, nod, try to suppress the lump in my throat and pray that they were right. They were and I wish they'd have offered some tactful advice on initiating some quiet time.

In a few days, Julia will have had her hearing aids for 18 months. A short while ago, I was calculating her "length of utterance" to see if she was using three word sentences. Now we have trouble having on an adult conversation during her waking hours.

She has something to say about everything. She has no internal monologue. She has been in bed for forty-five minutes and she still hasn't stopped talking.

During the day we chat about everything. I do nothing but pay attention to her for the majority of our time together, there's no need to have her stop talking. I've given up luxuries such as having a moment to think my own thoughts.

My husband gets home and I get the distinct impression he might like to say something. This is because he often tries to speak. Julia barrels right on, she needs fifteen different questions pertaining to the plot of Disney's Hunchback of Notre Dame answered. "Daddy is trying to tell me something, you have to wait," I tell her. Her sad little face looks like someone just shot our dog.

It seems hopeless in the daily grind that she'll someday be able to modulate her talking. Then I remind myself of the tiny signs of growth in this area: that she doesn't interrupt when I'm reading stories to her, that she can wait while Daddy tells his story. Someday I'll be begging her to tell me what she's thinking. Moments of silence are coming soon!

One thing I've gained from parenting a hearing impaired kid is a supreme appreciation of her speech. We waited such a long time for her to sing us a song or tell us a story, every word she says (and there are so many) is that much more special.

Tuesday, October 13, 2009

The girl with the things in her ears

We've never had anyone notice Julia's hearing aids. She usually wears her hair down or "straight" as she calls it. The over-the-ear part is flesh colored and she has clear ear molds. From a distance you can't even see them.

Ballerina hair styles, a bun today, and close proximity of dancers has led to some commentary on her magic ears during ballet class. After class her teacher told me that one of the other little girls addressed my daughter, "hey girl with the things in her ears." The kids are so innocent was the teacher's take on it.

In the car Julia told me that a girl asked last week, "what are those things in your ears." Julia told her they were magic ears and the girl didn't understand so she told her that they help her hear better. My pride in her ability to explain her disability is tempered with an annoyed worry for the future.

Perhaps my experiences of having a pair of really ugly eyeglasses in the first grade are making me think we'll have tough times over this in the future. A boy in my class, Matt, who incidentally did remain our school's resident hottie even into High School, said that my glasses were upside down. They had that kooky stem that is most commonly seen on old lady glasses. When he got over harping on them being upside down he latched onto them probably being my grandmother's glasses. Needless to say, I was more comfortable wearing my conformist wire frame glasses from then on.

By Middle School I was wearing a Milwaukee brace to treat my scoliosis. Kids weren't as mean as adults I encountered during that time.

Julia has no choice. She'll have to wear her hair up sometimes and innocence will soon be a word no longer associated with the kids in her class. I can only hope that her current sunny, resilient personality will carry her through those times when someone tries to make her feel self-conscious. And that kid in her ballet class better learn her name is Julia.

Wednesday, August 26, 2009

Giving better support

In my devastation when Julia's hearing loss was discovered, I sought to comfort and arm myself with as much information about the problem as possible. I read every bit of literature I could find on the subject of sensorineural hearing loss, went to a state sponsored parent education workshop and attended a parent support group meeting. Each activity provided me with endless opportunities for expanding my knowledge and my list of concerns.

Pamphlets and books were written for kids diagnosed as infants. They served to reinforce the importance of making the baby wear hearing aids all day long. They stressed that the first three years are the most important for language development.

The workshop and support group seemed skewed to the parents of kids with profound losses. My child only has a moderate loss. I felt a little sympathy and an overwhelming vibe that I should be skipping around celebrating that she isn't more deaf. "It's just a moderate loss, she'll be fine."

There I was with a toddler, nearly three years old, just diagnosed. I couldn't imagine how she'd ever speak normally. I needed something more than a brush off, "she'll be fine."

She is fine. Even back then, I knew she would be. But if I was approached by someone starting on their own journey as a parent of a child with hearing loss, I hope I would have something more to offer.

Commiseration is an obvious starting point.
It stinks to find out that your child is going to have a life altering, lifelong disability. It's not like wearing eye glasses. Eye glasses for your ears works to describe hearing aids to a preschool classmate, but it's not an adequate analogy for finding out your baby has never properly heard your voice.

Going to all of the IEP meetings, speech therapy, audiologist appointments, ENT appointments, testing - it can be tough. Even though a whole waiting room of parents were waiting on kids in much more serious situations than mine, I still had a tough time when Julia was under anesthesia to have the ABR test that confirmed her hearing loss.

There have been and will always be some problems.
I was deeply concerned that there could be teasing about the hearing aids themselves and the speech delay. I'd witnessed a kid in a grocery cart mocking my daughter and asking his dad why she talked like a baby. Once I had to restrain myself from pinning a boy's arm behind his back and whispering, "I'll break your little arm if you ever touch her hearing aids again, got it?"

I've read about adults with the same level of hearing loss feeling left out at parties and even family dinners. Leaving the table with hurt feelings because they missed the punchline of a joke. It's something we'll have to be cognisant of in the future. It will never go away.

These things aren't covered by a well-meaning catch all, "it will turn out fine." Sometimes better support comes from sharing the things that are tough and how over time it gets easier.

End of summer progress report

At the beginning of the summer I was geared up for a difficult time at the pool. There had been enough frustrating experiences with Julia misunderstanding and becoming frustrated while swimming sans "magic ears" that I sought help from various sources. No one responded to my question: what do you do when she can't wear her hearing aids?

Now the summer is winding down and swimming pool days are numbered. Without any outside help we've seen vast improvement. Even in this obscure area Julia has adjusted and is now thriving.

The change is in an awareness that she has developed. She tells me that she can hear people talking, but she can't understand their words. She reminds me several times, "You have to talk loud, I don't have my magic ears." She makes better eye contact. She is compensating.

This could be some sign to me that I can stop worrying. I doubt that there will ever be an end to my anxiety. But even I, the over-protective parent, have to admit she is a competent, autonomous little person.

Soon she'll be explaining to other kids all on her own how they can help her hear better and I'll sit back and listen from a lounge chair. She may even be able to train a swim instructor in the best way to communicate. Another battle is conquered.

Monday, July 13, 2009

Special "hearing" moments

My daughter has a moderate hearing loss in both ears. She got hearing aids on April 23, 2008. I began a distance learning program from the John Tracy Clinic in California around the same time. Recently, I finished the lessons and was asked in my last report to describe my special memories of the past year.

These were the two that came to mind:

The very first walk my husband and I took with Julia after she was aided was to our same old park. As soon as we got out of the house, she ran to edge of a steep hill where a road with a lot of traffic passed below. She wanted to see what all the noise was from and I had my first experience saying, "Those are cars! You hear the cars!" I was choked up for most of that walk to the park as she stopped to listen as a man dragged his garbage can over the black top driveway and every other noisy thing that I had never taken the time to notice before.

The second "special moment" happened at a zoo class I took Julia to at the Pittsburgh Zoo. I took her to the one titled "Zoo Tot Zoo Tot What do you hear?" for obvious reasons. The instructor had a guinea pig that made interesting sounds when she rubbed its belly. Julia kept asking to hear more! It was such a subtle sound, and I feel so blessed that she can hear it now!

Monday, July 6, 2009

Trouble with a hard-of-hearing swimmer

Julia loves to swim. Over four summers she's progressed to have some skill at it. With a pair of goggles she can swim about six feet under water. She's come a long way from the first trip to the pool when we dipped her tiny baby toes in the water.

Before her hearing loss was discovered at age 3, the pool was the same as any other place. It was never any use yelling for her. She was on her way to do what she was going to do. I ran after her and re-directed her. It took all that time for me to realize something, her hearing, was wrong.

Now we live every day with the miracle of her hearing aids. I'm grateful when she stops running because she heard me calling to her. We can tell each other stories. She talks constantly.

When we go to the pool and take out her hearing aids so she can go in the water, the hearing problem seems progressive. She responds really well at first. It even gives me a thought that she could get by without being aided. As time goes by, she seems to miss more. Lately we've been having tremendous difficulty with her misunderstanding me.

Today was a perfect example. We went for a short swim during which it seemed she could hear everything she needed to. I'm sure there would be no hope of her carrying on a conversation with a stranger, but mom's voice is the most important anyway. We got out of the pool after no more than twenty minutes. The apartment complex doesn't heat the water enough for our liking and Julia needed to warm up.

As we wrapped ourselves in towels, Julia became frustrated that I wasn't putting hers on the way she wanted it. I tried to explain what I was doing. She started to whimper. I conveyed that it was time to go home anyway.

She's been a real stinker about wanting to let her hair air dry. This has always been a point of contention with us. I spent all of last summer trying to minimize the time she spent without her hearing aids so that she could be exposed to as much language as possible. Now that she is doing so well and talking every minute of the day, I figure it will be okay if she spends longer days at the pool and even if she lets her hair air dry.

Once we were home, it took about six tries to get her to understand that she should put on underwear. All of these even though we were standing two feet from each other. She was facing me and I really think that she'd have gotten this just after her hearing aids came out. I finally had to open her drawer and point.

The hair was still air drying and Julia was having blueberries for a snack. She brought one to me that was all brown and instructed me to eat it. I didn't want to eat it and I told her neither of us should eat it. I threw it into the bushes and she immediately started sobbing. She wanted to eat blueberries. I told her she could still eat the good blueberries. She started into a tantrum.

I decided that enough was enough and I was going for the hair dryer. This did not go over well.

Once the hearing aids were back in the misunderstanding and the tantrum were soon resolved. Julia remained mad at me for a while because she didn't want her hair dried.

I'm stymied with this issue. I've spoken to her hearing teacher and I've never had a bit of advice other than to make sure she's looking at me when I speak to her. She is looking at me and she's still not getting it.

I think as Julia grows up, she'll be able to compensate for the hearing loss when she's swimming. I hope so, because she has the makings of a tremendous swimmer. Perhaps in the meantime I'll have to learn sign.

Monday, June 22, 2009

I HEART PA

I have lived in Pennsylvania my whole life. I've never even travelled much. Until recently, I was only living here because I'm overly attached to my parents. I have trouble missing a Saturday at their house.

Still I could live in Wheeling, WV and be close enough for that.

Then, in February 2008, my daughter was diagnosed with moderate hearing loss in both ears. And while I was still in shock over something I thought I was prepared to hear, the audiologist said, "You don't need to worry about anything."

She gave me a packet prepared by Children's Hospital and the phone number of a very knowledgeable, personable woman whose sold purpose it is to handle insurance issues. Within a few days of the definitive ABR test to confirm Julia's hearing levels I had a bright yellow Access card. A week or so later it was replaced with a more socially acceptable UPMC for You card that has paid entirely for a pair of hearing aids, ear molds, audiologist check-ups, ENT visits, and all of her routine medical care.

No private insurance would pay for hearing aids even though the hearing loss is deemed educationally handicapping. My kid couldn't hear enough to learn to talk, but in most states that would have been our problem alone. We would have likely taken a loan and had a hearing aid payment for the rest of our lives. Not in my Pennsylvania.

Pennsylvania kids with all kinds of disabilities are on Medical Assistance, removing a burden from their families that allows them to focus on caring for the child rather than figuring out a payment plan. There is no income restriction for a qualifying disability. The program has been a blessing for our family and a benefit of living here that will be hard for any other place to top.