Thursday, December 27, 2012

The Imperfect World of Captioning

Our family likes to watch movies. Julia was completely spellbound at age three when she watched her first movie, Snow White and the Seven Dwarfs. In the past couple of years, she's matured into a bigger kid movie viewer. We watched all of the Harry Potter movies and the Chronicles of Narnia. We only remembered the Lord of the Rings trilogy when preview started for the new prequel, The Hobbit.

So Christmas break became a Lord of the Rings marathon.

Quite on accident, LOTR Fellowship of the Rings started displaying the closed captions from the moment the DVD was inserted. Tim went for the remote to turn the captions off, but I asked him to leave them. Maybe they would help.

Watching the bigger kid movies with Julia isn't always completely enjoyable.

"What did he say?"
"What's going on?"
"What? WHAT?"

The Fellowship of the Rings was pure bliss. Julia was relaxed and didn't ask for mid-movie plot explanations. Tim and I agreed that we may not have known what was going on when we first saw the movie. Hobbits, Elves, and Orcs have tough accents. Background music crowds out the dialog. Why don't we all use closed captions?

The second movie was also a DVD with identical captions to the first. I recorded the Return of the King from a free preview weekend of Starz and we found those captions weren't as good. Instead of popping up when the character was speaking, these captions were late, often continuing after a scene had ended. Though flawed, it was still better than nothing.

After enjoying the full nine hours of the trilogy, we went to our local theater to see The Hobbit. The theater offers closed captioning at most shows. We chose a matinee and requested a closed caption device.

Cinemark selected the CaptiView Closed Caption Viewing System (CaptiView) to transmit the closed captions to audience members who desire the assistance of captioning.  CaptiView provides captioning to those who have significant difficulty hearing the movie soundtrack via an OLED display on a bendable support arm that fits into the theater seat cup holder. (http://www.cinemark.com/pressreleasedetail.aspx?node_id=22850)
The device is a little screen on a long stalk that fits into the seat's cup holder. Three rows of text appear between shades that keep the light from bothering other patrons. The long bendy pole is meant to be super adjustable, but Julia is shorter than an adult (we've been teasing that she might actually BE a Hobbit). It was nearly impossible to get the thing to the right spot in her field of vision without blocking the movie screen. We spent a good ten minutes wrestling with the set up.

None of the previews were captioned. I kept checking expectantly, but the little display just said, "Captions are not available for this preview. Captioning will start with the feature presentation." Bummer.

Finally, the movie started. Julia was captivated. I could see her look to the captions frequently during scenes that were heavy on dialog. Afterwards, she said it was okay.  Her main complaint was those shades that make the screen look dark unless it's angled just right. For some of the movie she actually held onto the screen to keep it tilted so she could see.

Though imperfect, captions have made life better. On our TV, we showed Julia how to turn them on herself. Now, most times we find her watching Doc McStuffins with the captions. She likes it and we've even convinced her that she can turn the volume down a bit. Good news all around!

Tuesday, December 11, 2012

DIBELS and other nonsense

Second grade has been interesting. That is to say, Julia adores her teacher, loves school, and every day I think about pulling the plug on it and homeschooling her. I think that's called a dichotomy: my equally impressive, simultaneous, and completely opposing feelings that school is great and I don't want to send her there anymore.

It started with the DIBELS. "The Dynamic Indicators of Basic Early Literacy Skills (DIBELS) are a set of procedures and measures for assessing the acquisition of early literacy skills from kindergarten through sixth grade." (http://dibels.org/dibels.html) Basically, it's a test given periodically to make sure students are gaining those important building blocks on the way to reading fluency.

By all accounts, Julia was doing wonderfully. One paper came home from school showing her reading comprehension on par with that of a child halfway through third grade. She was... is a fluent reader. She can understand and retell stories read to her and that she read independently. But in October, she didn't achieve benchmark on the nonsense word portion of the DIBELS.

Trouble with nonsense words seemed to snowball or at least coincide with a bunch of other less than promising findings. We discovered she couldn't decode short vowel sounds. Then I began to pick apart the mechanics of her whole process. She doesn't use phonemes but seems to read by patterns. Suddenly there are all of these holes in her emerging literacy. She has started confusing b's and d's while reading, expanding a problem that had previously been contained to just her own messy handwriting.

For a while it seemed everything was falling apart. At least one source indicated DIBELS is not a good assessment for kids with hearing loss. Should we just do away with DIBELS? But we can't let her fall behind in reading. I was starting to lose sleep over it.

Fortunately, I am in regular contact with a handful of people that have infinitely more knowledge than I do about teaching kids to read. These experts suggested visual phonics. Visual phonics pairs a hand shape/motion with each sound. There are 46 of these sounds in the English language. (http://seethesound.org/visual_phonics.html)

I figure it's worth a try.

There was some delay in implementing visual phonics. I learned that our school district doesn't use visual phonics. They made up their own set of cues to avoid the cost of training teachers on the already developed, standardized program. Though completely baffled that there's even an option, I had to decide whether Julia should learn visual phonics (like the rest of the world) or the other thing.

We chose visual phonics.

So far, Julia has learned the cues for long and short "o". She announced afterwards that she doesn't like it and doesn't see how it's going to help.

"I never understood how this helped you remember to make an /s/ sound," I told her waving my index finger in front of my mouth like I've done so many times over the years. "But it did."

So we're forging ahead. Julia is getting extra practice at school with those nonsense words. She's got a stack of flashcards with different syllables that she combines to make her own nonsense words. I've increased the amount of daily independent reading time she has in case it's my corrections that are messing her up when we read together. She'll learn visual phonics whether she likes it or not.

And I, always the anxious mother, will attempt to trust the public school system... and breathe.

Tuesday, October 23, 2012

Parking Lot Revelations

Our community loves parades. It must because twice per year more than half of us march down the street throwing candy at the few people that aren't in the event themselves. Julia also loves a parade. More than anything, she loves being in the parade.

In mid-September we marched in our third parade since living here. It takes a long time prepping for one of these deals. You must arrive an hour before it starts. You must stand in the parking lot, shifting from foot to foot, conversing with the other mothers, directing your child not to eat the candy that they're so excited to throw in the street. You must love your child. You would not choose to do this for any other reason.

This year, Julia's second grade class (taught by Mrs. L) has three girls that are also in her Brownie troop. It provided a bit more fodder for the pre-parade conversation. We talked about which boys our daughters mention and what they play at recess.

Then the other mom, we'll call her Inquisitive Mom, asked, "So Mrs. L wears that thing around her neck. What's that thing she wears around her neck?"

"Oh, she has a sound field in her classroom. It amplifies her voice using the four speakers in the classroom," I say.

"But Julia doesn't need that, does she? Is it for Julia?" probes the Inquisitive Mom.

Suddenly, I feel defensive and weird. "The sound field isn't specifically for Julia," I sputter. "Mrs. L has always used it. It's hooked up so that Julia's FM works with it. Mrs. L wears one microphone and it goes into the speakers and Julia's hearing aids."

"But she doesn't need that does she? I mean you wouldn't even know there's anything... with her. You can't tell," says Inquisitive Mom.

"She could probably get by without it," I say.
Why did I just say that?
"What it does for her is it reduces the listening distance,"  I'm still talking.
This woman has no idea what I'm saying and all she's going to remember is that we make the teacher wear an unnecessary microphone because it gives us pleasure to make people do our bidding.
"Instead of being ten feet away from Julia, the FM makes it like the teacher is right next to her talking. It helps a lot when they're learning new vocabulary and when Julia needs to discriminate between similar sounds."
I used way too many big words.

Another mom joins the conversation, agreeing that Julia shows no signs of needing any special accommodations. It's a backhanded compliment. I nod and say, "yes, she does very well."

I mention that Julia's first grade teacher always used a sound field, even before Julia was in her class. I tell them that both teachers find that it really helps all of the kids. The students have better behavior and attend well to their lessons. I tell them that Julia did better when using the sound field and the FM as opposed to personal FM only. The moms agree. "You gotta do what works."

The conversation turns and eventually the parade blissfully ends.

A week later, Julia came home from school filled with facts about the classroom butterflies that had just emerged from their cocoons.

"Do you know what a butterfly mouth is called, Mommy?"
"No."
"It's a KAboscis!"
"Wow," I laugh. "That's a funny word."

For an entire weekend, Mom, Dad, and Julia made KAboscis jokes. "Shut your KAboscis," was used more than once. Julia got a new stuffed animal and named it Twinkle KAboscis.

Eventually, a paper came home from school with a diagram of butterfly parts. A butterfly mouth is called a proboscis.

She needs the FM. Even with it, strange new words are challenging.

I'm glad that my daughter has wonderful speech and holds up her end of a conversation. I'm glad random parking lot moms can't tell how much she needs her hearing aids and classroom accommodations. But I'd advise society as a whole to be careful when making judgements about what children need. There's often more too it than meets the eye.

Wednesday, October 10, 2012

The luckiest girl in the world

Let's Hear It For Almigal was a surprise in yesterday's mail. I'd forgotten it was coming which makes my life a bit like multiple Christmas mornings. I quickly remembered that I could have been anticipating a present in the mail and flipped the book open to read the story of a little girl with "cotton-candy pink" cochlear implants.

The story starts with the girl using pink hearing aids. I'm confused.

Several pages later, Almigal can't hear well with her hearing aids. I am reading my nightmare. Her doctor suggests cochlear implants.

I snap the book shut. This is too much like our ENT, Dr. C.'s, terrifying reassurance that my daughter would be a good candidate for cochlear implants if her hearing loss progresses. It's something I don't like to think about.

I spent a good bit of time yesterday avoiding the book, but it is beautifully illustrated and cotton candy pink. Julia wanted to read it together after school.

"Hi, my name is Almigal," it begins.

"That's a funny name," says Julia.

"Yeah," I say.

"And I am absolutely, positively the luckiest girl in the world," the book continues.

"No she's not," Julia interjects. "I am."

We read the whole book, Julia arguing that she is the "luckiest girl in the world" even though Almigal seems to think the same thing. Julia agreeing that "sign language is supremely awesome." Julia identifying with Almigal to a point.

I was a bit relieved to read that Almigal thought the cochlear implant surgery was "a piece of cake."

Let's Hear It For Almigal is a lovely story, well written and beautifully illustrated. It made me feel calm (for a moment) thinking about something that usually fills me with anxiety. And it reinforced my hypothesis that these books are just as useful for parents as they are for kids.

We all need a gentle, brightly illustrated reminder to embrace each others differences. In fact, I might start carrying a few of these books around with me. These authors do a better job explaining hearing loss than what I come up with when put on the spot by another Mom. Imagine the convenience of having Oliver and Almigal doing all of the explaining!

***

Friday, September 28, 2012

Medical Assistance Copayments

On September 21, 2012, the Pennsylvania Department of Public Welfare sent letters to families receiving Medical Assistance for children with special needs. In true DPW style, the letter was nearly impossible to decode.

First, a full page devoted to reassuring us that our benefits "have not changed" except that things that used to be free would now, in fact, not be free. The bottom of page one includes the name and address of free legal help. These letters do tend to make one ready to file a lawsuit pretty quick. I gathered by page three that our family would now be responsible for 5% of our monthly income in copays because our income is at least 200% of the poverty level. To me it read like an annual copay responsibility (not too bad) so I breezed through to the end, several pages of the appeal procedure and a delightfully friendly "Welcome to Medical Assistance" page.

I showed the letter to Tim. His engineering brain led him to scrutinize the document closely. According to him it was 5% of our income per month, but a table suggested each service would have a copay amount assigned to it. For instance, a service that bills $100-200 to Medical Assistance would charge our family a $20 copay unless we'd hit that 5% limit.

Some services were listed as exempt from copays: family planning, emergency services, laboratory services, tobacco cessation, oxygen. Twenty-one exempt items in all. No where did either of us see how much hearing aids would now cost us.

We're not ready for new hearing aids. We're nine months away from even getting new ear molds, but I don't like to be surprised. I called the 800# listed because I had questions.

You'll find at least three different 800 numbers throughout the twelve page packet. I picked one, and of course a long message indicated that next time I should call a different number. Five minutes later and two many button presses to count, I had a human person on the line. She informed me that I needed to call UPMC as they are the actual health plan. DPW isn't mandating how the copays are to be collected, she said.

So why the table? The exclusions? She certainly couldn't answer those questions.

UPMC was much quicker to answer my call. I only had to press #1 for English once and it was a much shorter wait time. Here I got good news. UPMC is not charging copays for children. They're advising everyone to disregard the behemoth, rather upsetting letter from the state.

As far as other health plans, my UPMC friend doesn't know. Each family will need to contact their own provider to find out the real deal with these copays.

This revelation leaves more questions than answers. Are the providers just going to be shorted on each service? Are less providers going to accept Medical Assistance because of these changes? If this is really variable between health plans will my child's doctor know what to charge us?

For now, it's good news in our house. Still, after November 1st I'm going to get a little thrill when I present Julia's health insurance card. Not the good kind either.

Monday, September 10, 2012

Waking the Deaf*

Two summers ago, I attended a parents-only presentation during Pennsylvania's Great Start Conference. The doors were closed to professionals to give us all comfort and freedom talk about said professionals. I don't remember any juicy disclosures about the uninvited, but I've never forgotten one of our sidebar discussions.

"How do you wake your kid in the morning?" the presenter asked. "I don't know the answer, I seriously just want to know how you do it. Give me some ideas."

I raised my hand high. "My daughter is very sensitive to light," I replied. "I just open the blinds in the morning and fifteen minutes later she's awake."

Easy-peasy, as Julia would say.

And I knew even then that I had made a mistake. I'd jinxed it and soon, growing more mature, getting sleepier, and discovering the ever present draw of a peaceful slumber, Julia would get over her sensitivity to light. 

This summer, she slept past 7 for the first time in her life. Sometimes she'd make it to 9:30, even 10. Sunlight was powerless to stop her.

On school mornings, I open the blinds. That serves to help me find her. Then I hug, kiss, and shake her until she's awake. Groaning she'll ask, "is it the weekend?" I sign "no" and she burrows under the covers.

Luke and Leia during a forced period of outdoor wakefulness.
Most mornings, I enlist the help of these two: the fuzzy alarm clocks. They are effective past 8 am. Full of energy and eager for a play mate, they'll jump all over Julia, not stopping until she is upright.

Before 8 am, not so much. They're Shih Tzus. Roughly translated**, "shih tzu" means "to sleep all day." Even though they bound after me with much enthusiasm, they will very willingly curl up next to their kid for an early morning nap. She throws her arms around them and it's over. Now I have to wake a kid and two dogs.

The morning wake up is one of my favorite parts of the day. Sometimes, Julia tries to pull me under. I can score an extra hug before she really knows whats happening. Eventually, I'll have to get her an electronic device. But for now, I enjoy the morning wake up. Useless fuzzy alarm clocks and all.



*We don't normally refer to our daughter as "deaf." See here, for further explanation.
**Shih Tzu does not mean "to sleep all day" although my dogs do sleep all day.

Monday, August 20, 2012

A book about Julia

In a few weeks, or however long it takes for reading materials to cross the Atlantic, we'll add a new book to our library of titles about hearing loss. This one will be called, All About Julia.

For $14.99 (or almost $25 American), you can create a personalized experience book about your child's hearing loss. That's cartoon Julia on the left. She's sporting pink hearing aids. Real Julia would love rocking striped tights and flowered boots!

The online form asked lots of questions about the nature of Julia's hearing loss and her communication preferences. It included space to write about her interests and activities. She is much more than a girl with hearing aids after all.

I'm excited to have more than Oliver the elephant to help us explain hearing loss to Julia's second grade class. What a great idea!


Friday, July 27, 2012

The Wisdom & Confidence of Seven Years

I have a recurring dream about hearing aids. It starts with a shocking realization that I wear a pair of BTE aids just like Julia's. Then inevitably, I stress over getting them wet or losing them or some other tragedy.

This has replaced the "big contact lens" dream of my youth. Instead of a gigantic contact lens that couldn't possibly fit in my eye, I'm now wasting REM sleep dreaming about hearing aids I don't even have. Would it be too much to dream about basking in the sunshine? Or relaxing? Or just anything nice?

Even Tim had a dream one night. He was back in high school, he told Julia and I. A girl he was friends with had to get hearing aids. She was embarrassed. Tim knew he should talk to her, but didn't as so often is the case in dreams.

"Why was she embarrassed?" Julia asked.

Tim and I looked at each other. Julia is not embarrassed by anything. We've made a concerted effort to keep it that way. I had a moment of fear that letting her know a person might be embarrassed by hearing aids would make her embarrassed of her hearing aids.

"They shouldn't be," Tim said finally. "People are insecure."

"It can be hard to feel different sometimes," I added. "I remember being very embarrassed when I had to wear my scoliosis brace as a kid. It really hurt my feelings when people asked me about it in a mean way."

"Well, hearing aids are nothing to be embarrassed about," Julia concluded. "Besides, if you're a girl you could just pull your hair down over them or something. Maybe it's harder for boys."

That was it as far as she was concerned. Tim and I seized a teachable moment wherein we tried to boost her self-confidence by talking about how wonderful our seven-year-old daughter is. Julia doesn't mind when we do that. She already knows.

I hope she never forgets. That would make a nice dream.

Wednesday, July 18, 2012

Magic Ear Kids Sponsors Race Car

Sunday, July 15th, 2012 was a big day for magicearkids.org. My little web site entered the world of sports car racing by sponsoring the Slipstream Racing Riley Daytona Prototype in the Targa Series Pennsylvanian 150.

This was the first race of the Targa Endurance Championship Series, sixty laps at Pocono Raceway. The race car, sponsored by Magic Ear Kids and Hands & Voices of PA, was driven by world renowned driver, Tim Resciniti. Tim led all but a few laps of the race securing a first place finish. He seems to think his sponsors owe him a t-shirt.





The event was televised live on GlacierTV. You can watch it here on YouTube. The Magic Ear Kids car is green in the video. My sources tell me it will be pink as promised by The New York State Classic in September. Keep up with all things Targa Series by visiting GPLaps.

Friday, July 13, 2012

An Idiot's Guide to Ear Problems

A real breakthrough has been made this week in our child's swimming ability. Monday was the first day of swim class. The same swim class Julia took last summer complete with the same three instructors.

I've been sitting, relaxing even, poolside, while two out of three instructors repeat the instructions at close range. They check to make sure Julia knows what she should do. Julia is paying attention without any prompting. Her determination and the instructors' accommodations have made all the difference. After three lessons, Julia figured out how to swim on top of the water. She coordinates her little arms and turns her head to the side. It's slow, but steady, and close to accurate.

I am thrilled.

There's still that third instructor though. Last year, I figured him for a teenager. Maybe he's in college. Either way, he doesn't get it.

On Monday, Julia interacted only with the two accommodating instructors. I thought this might have been by design. The boy has lots of other kids to work with.

Shortly into the lesson on Tuesday, he came for Julia. "YOU. GO. DO IT!" he barked.

By that he meant, "please float on your front for five seconds and then flip on to your back and float for five seconds."

Julia looked at him quizzically and thrashed around in the water. He attempted some crude pantomime. More thrashing. The boy eventually grabbed her by the arm and moved her back into the waiting area.

She was back with the preferred teachers for a few skills and then as luck would have it, again with the boy. This time he indicated her turn with a forceful jab of his finger.

In three steps I was hovering over him, "Excuse me, she really needs you to repeat the instructions at close range. That pancake flip you took her for last time didn't go well because the communication wasn't there. The other two instructors have been having success making sure she knows what to do before they take her. You need to explain it to her again or maybe just let the other teachers take her. That would be fine too."

I turned back toward my chair. I'd said my piece. It wasn't really a conversation, but then I heard him talking.

"I know," he said. I turned around. "We've had kids before with cochlear implants."
"She doesn't have a cochlear implant," I said, possibly cutting him off. "It's not the same thing."
"Yeah," he shrugged. "I get it. She has an ear problem."

And you have an idiot problem.

Thankfully, his boss, one of the two preferred instructors, interceded and informed the boy that he should just repeat the directions.

It's been a good opportunity for Julia to work on her self-advocacy skills. "Don't go unless you know what you're supposed to do," I told her after class. Tim suggested we teach her to say, "Hey (insert alternate name for a donkey), I didn't hear you!"

That may be a little much.

By this afternoon, the boy was doing better during the few times he instructed Julia. It seems like Julia is much less inclined to guess at what she should do. She objects when she doesn't understand. It helps that she's getting the hang of her swim strokes. And that two of the instructors are really going above and beyond. Perhaps Meatloaf was right, "two out of three ain't bad."

Sunday, July 1, 2012

At last, I've found it!

In 2008, I attended my first support group for parents of deaf/hard of hearing children. Julia was freshly aided but still non-verbal. Her dad and I were in full-on panic mode. The Internet did not paint a pretty picture for late-diagnosed kids.

Tears came easily in those first months, and I was eager to connect. I learned two things at the meeting:

1. My daughter wasn't "deaf enough" for me to even worry about.
2. Hearing loss is overcome exclusively through the use of intense auditory-verbal therapy.

I left feeling worse than I did going in, burdened by the guilt of my daughter's residual hearing (other kids had much less) and more anxious than ever about those years of missed speech therapy. It wasn't what I had in mind when thinking of "support."

Over the years, I met many more families and read documents promoting every methodology. I attended presentations that chastised parents for not signing because the lack of a visual support to spoken language is something akin to child abuse. Total Communication alternated between being the holy grail of Deaf Ed and a non-existent, nearly mythical misnomer. I heard research eluding to the inability of signing children to learn to speak and that they would never learn to read. All around there were pronouncements of children being "too deaf" or "not deaf enough" for one thing or the other.

In spite of these hard and fast pronouncements, happy, healthy kids were all around reading and communicating.

During this period of self-discovery, I stumbled upon Hands & Voices. "What works for your child is what makes the choice right," is their motto. Here was an organization, finally, that showed me all of the options and advocated fiercely for the rights of every deaf/hard of hearing child. Hands & Voices is a network of families supporting each other to achieve the best life for their child.

I felt a great relief as I learned more about Hands & Voices. I think it might have calmed some of my fears had I found it a few years earlier!

Today, there is a growing Hands & Voices chapter here in Pennsylvania. Hands & Voices Guide By Your Side of PA is helping families with newly diagnosed children (birth-age 3) navigate the many decisions they face. We're working hard as a chapter to help families and professionals network throughout the state.

It is my hope that parents will have an opportunity to attend a Hands & Voices event and that the support they receive will be meaningful and unbiased. Together we can achieve positive outcomes for every child and make sure no family feels they're in this alone. It's a positive message, guaranteed to leave you feeling better after the meeting than before!

Sunday, June 17, 2012

And we were just starting to have fun....

Julia's audiologist moved recently from the Children's Hospital of Pittsburgh satellite office in Wexford to the main campus in Lawrenceville. It takes the same amount of time for us to travel to either location. Lawrenceville is just more trafficky-scarey-anxiety inducing.

This audiologist is irreplaceable, so I decided to deal with my anxiety. Tim accompanied us on our first appointment for new ear molds. Julia's summer hearing test was my second time navigating into what I consider "the city." I still couldn't find the right parking garage and had to utilize some deep breathing relaxation techniques. Finding the valet helped as well.

My efforts were rewarded with the most amazing waiting room ever.

After taking the "grape" elevators to the third floor, we checked in and received a restaurant-style pager. Very necessary as so many playthings drew us far from the "alligator pod" where we were to present ourselves for our appointment.

At the push of a button, this machine transports a ball through a maze of wire track. It could easily occupy the whole family for our short wait, but there's more to see.

This train layout enclosed in glass is operated by a series of buttons on the outside. The kids can drive the trolley from Mr. Roger's Neighborhood and send circus people flying through the air.

There's an elaborate fish tank (not pictured) housing Dory and Nemo look alikes and a super cool crab. Little tables and chairs, a couple of touch screen computers so the kids can color by tapping the screen, and a slew of televisions showing various cartoons make the place so entertaining I'm afraid we might have to stay after the appointment just to take it all in.

The hearing test part of the day was uneventful. Julia's hearing is blessedly stable. She presented her audiologist with a painting. For months Julia had worried over the state of the new office.

"She probably doesn't have anything on her walls!"


Now she has this spectacular painting of the parts of the ear.

Our next regularly scheduled visit will be next summer. Julia will be heading into third grade by then. I will have to wait a full twelve months for the reassurance of a fresh audiogram. I think I'll miss our six month check-ups. It figures we'd finally stabilize and warrant only yearly follow-ups just when we find a waiting room that's worth the wait.

Thursday, May 31, 2012

What's your sign?

Julia has hearing loss. Four years ago, when she was first diagnosed, I sometimes used the term "hearing impaired." I was quickly notified by an adult blogger with hearing loss that no one wants to be "impaired." It has a negative connotation.

So I deliberately adopted "hard of hearing" and "hearing loss" as the descriptors around our house. Julia would tell you she has a hard time hearing without her hearing aids.

Some families facing the same level of moderate to severe hearing loss use the word "deaf". I never put much thought into the semantics of it all.

Then we took a family trip to Niagara Falls. Our hotel was on the 49th floor. The view was incredible and worthwhile even with a ridiculously long elevator ride to the ground floor swimming pool.

After an evening swim, Julia was dripping wet and without her hearing aids in the elevator. We know a few signs and Julia can hear loud speech at close range. We get along pretty well at the pool and while waiting to dry off.

A middle aged man got in the elevator and began to make friendly small talk with Julia. It was obvious that she'd just been swimming. He was trying to ask her if she liked the water slide. She did not respond.

"She's deaf," my husband explained.

I nearly gasped. Immediately, I felt like screaming, "She is not. She is hard of hearing."

The man continued talking. Tim leaned over to repeat the questions so Julia could answer. I stood back, feeling strange about the bizarre knee-jerk reaction I'd just experienced.

"It was just easier to say 'deaf,'" Tim explained later when I revealed my innermost ravings on the topic. I agreed, all the while aware that I would have given the man an educational presentation occupying the entire length of the elevator ride.

There are still moments of debate and confused emotion even though it seems like we have everything figured out. We have a frequent conversation about when Julia lost her hearing.

"I think she could hear when she was born," I say. "I think she lost her hearing when she was 12-15 months old."
"Of course she could hear when she was born," Tim interjects. "She can hear now."

Then we talk about hearing "normally" and how a mild loss right at the time when she should have started talking could have delayed her speech. As if we need to clarify this to each other.

It's a reminder that for all we've figured out, there is so much more we have to learn. Perhaps more knowledge will melt away our remaining sensitivity. I can hope.

Friday, April 20, 2012

Silly Things To Do With a Size 13 Battery

Once upon a time, not long ago, all was well with me and the batteries. I picked them up from a satellite campus of Children's Hospital each calendar month. I stashed them in my purse. I handed them out as needed. I had a responsible little girl. Julia was the model hearing aid user.

Occasional mishaps interrupted our orderly life: a battery lost and quickly recovered, a hearing aid worn for a few minutes with its battery compartment empty. It was only enough to cause occasional irritation, especially since I was the one most apt to open the aid and lose the tiny battery in my daughter's bed.

Things are a bit different now.

On a quick stop at my parent's house, Julia was enjoying some time on the swing. I couldn't get her attention to call her back to the house, but I didn't think much of it. I walked across the yard and retrieved her.

Fifteen minutes into our car ride home she says, "I need a new hearing aid battery."
"Okay," I say. "Give me the old battery and I'll hand you a new one." This is the standard procedure for battery swaps while driving. It keeps the size 13's from ending up under the seats.
"I don't have it," Julia replies.
"What happened to it?"
"Well, I was swinging and my hearing aid was squealing and it was annoying me and I turned it off and the battery fell out in Nana's yard."
Julia speaks exclusively in run-on sentence form when delivering bad news.
"So you have had one dead hearing aid for the past hour?"
"What?"

This conversation was continued at home. It included Daddy and I figured it for a pretty good call to action for my now seven-year-old to get back on the responsible train.

A few days later, right after school....

"Mommy, I need a new hearing aid battery."
"Did it just start beeping?"
"No. It was beeping during math and I raised my hand and my teacher didn't see me or maybe she saw me but she didn't call on me and I was going to have to hold my hand up forever so I decided just to wait."
"Okay, I'll get you one, but I'm sure your teacher wouldn't mind if you just got up and changed your batteries during class. It is important."
"Okay, mommy."

I decided for unknown reasons to get batteries from the extra pack kept in Julia's own book bag. I pulled out the pack and found only two batteries left in the four pack. Closer inspection revealed they weren't seated in the pack correctly. They had stickers but the stickers were crooked. Julia put old dead batteries in back in the pack.

Dialogue ensued over this discovery, but it was fruitless. She had no reason for doing it. She knew it wasn't the right thing to do. "Sometimes I just like to do my own thing," she said.

It's an honest answer and the reason I will quite likely always have a pack of size 13 batteries in my purse.

Tuesday, March 6, 2012

Spy Kids 4: A Hearing Aid Surprise

Movie trailers for Spy Kids 4: All the Time in the World, led us to rent the whole series. Julia was enamored with Carmen and Juni Cortez. She determined after the first film that she would become a spy.

Julia also wants to be a teacher, a surfer, and a bird feeder.

There was a big gap in time between the release of the third and fourth movie. The original spy kids are all grown up, replaced by twins, Cecil and Rebecca Wilson.

"He has magic ears," Julia exclaimed up on seeing Cecil for the first time.
"Those are too big," I replied. "Those are the size of Cochlear implant processors."
"I think they're supposed to be hearing aids," Tim said.

The kid's hearing aids were huge and I was bothered. Are those really supposed to be hearing aids? Since getting my very own iPhone, I can't let these questions go unanswered. I googled.

The Internet never disappoints. I soon learned that a very old pair of huge hearing aids were painted blue for use by an actor with normal hearing. The Deaf community sparred a bit over whether or not it was an accurate portrayal of hearing loss. I put down the phone and got back into the movie.

Cecil turned off his hearing aids to ignore his sister and I hoped Julia wouldn't get any ideas. The bad guys stripped Cecil and Rebecca of their spy gear, insisting that Cecil give up his hearing aids. The two kids started signing to one another prompting Jeremy Piven's character to ask, "what's up with the jazz hands?"

The villains gave back the hearing aids after Rebecca indicated that her brother is "hearing impaired."

Aside from Cecil's ability to eavesdrop on whispers and crack a vault by turning up his aids, I thought the boy's performance was a fine depiction of an aided kid with hearing loss. People tell me frequently that you can't even tell Julia has a hearing loss. She participates in group discussions more than her typically hearing peers. She's always at the head of the class, not so much from any need to be there, but because she likes the front row. Someday, I hope we can carry on a conversation in ASL.

I was thrilled to see a child in a major movie with hearing aids. He's a spy even.  What a great role model!

"Pretty cool that the boy in the movie had magic ears, right?" I asked Julia after we finished dancing the tango to the credits.
Julia shrugged, as if to say, "why wouldn't he have magic ears, Mom?"

And I realized, she doesn't need a movie to show her there are no limits. Still, I was happy to watch one.

Sunday, February 12, 2012

iCom + iPod = iFrustrated

We were in a good place using Julia's Phonak iCom. Such a good place, I wrote a nice review of it.

For weeks, I powered on the iCom via it's small round button and handed it to Julia. She would watch movies or play games on her iPod as the sound played right into her hearing aids. Tim and I could listen to music or even talk to one another on long car rides. It was bliss.

Then we heard, "MOM-eee. My iCom's not WORKing!"

"It only has two buttons, Jules," I'd say. "You need to figure it out."

I achieved this response after hundreds of attempts to fix her setup while not being able to verify whether or not success had been achieved. I tried to tap the power button and press the large square front button in just the right order. Julia would try to give thumbs up or thumbs down to let me know if the sound-only-she-could-hear was playing. Apparently the iCom can work for two seconds and then cut out. This resulted in the dreaded spinning thumb of indecision.

I can't take anymore.

We went back to the 3.5mm cord thinking that the Bluetooth connection was acting up. There are solar flares, my husband says. Or maybe too many i's.

The 3.5mm cord plugs into the headphone jack of the iPod reducing finicky wireless connections. It worked for a little while before my child's bellowing call of "MOMMEEEE" awakened me from my turnpike trance. Maybe there's something wrong with the iCom's ability to communicate with the hearing aids. Maybe the iCom was just too good to be true.

We'll ask the audiologist, but until then... iFrustrated!

Friday, January 27, 2012

The stuff of better hearing

Last June, Julia got new hearing aids. After three years with her flesh colored Phonak eXtra aids, she upgraded to Phonak Naida's.

I still can't pronounce that word, "Naida."

The new hearing aids are more powerful. They have more features. Most importantly, they are light pink.

Naida's wirelessly communicate with a device called an iCom. The iCom links to phones and allows Julia to listen to her iPod without me listening to her iPod.

The new stuff is pretty cool. Though at some point, I was blown away by the sheer volume of stuff we now have.
  • The first hearing aids came with an Oliver the Elephant pack filled with little tools, FM boots, and accessories.
  • I took to saving ear molds. The first set because she was little and her ears were going to get bigger. (Tiny ear molds were going to be like cute toddler hand prints.) Subsequent molds have been saved for reasons I cannot quite identify somewhere between nostalgia and utility. We might need those old rock hard impressions some day... 
  • We soon added a personal FM for home use. 
  • The third pack of stuff arrived with the Naida's. A cute bag filled with much of the same stuff that we still have in the first bag. It's all organized, waiting for some possible use.
  • Our original Hal-Hen drying jar should probably be thrown out.
  • A brand new Dry & Store for fancy drying and germ killing.
Over the years, I'll have to learn how to let go of some of this stuff. Right now, it's a very visual reminder of our many blessings. The technology exists and we have access to it. I love the stuff!

My review of the Hal-Hen drying jar and the iCom are part of my Yahoo! Voices profile.