Wednesday, May 22, 2019

New Hearing Aids and Altered Ear Canals

Julia stopped using FM in sixth grade.

Of course, I never thought I'd have one of those kids. My kid would always use all available technology. My kid would follow the rules

The rules surrounding FM* in middle school were complex. Julia had to take the transmitter to each teacher and follow a schedule of channel changes to be sure her transmitter wasn't interfering with the others in the building. All this for a benefit that she didn't especially appreciate. The system became burdensome and annoying. We decided that she could go without the FM if she maintained her grades.

We didn't even notice a blip in academic performance and so by the time her Phonak Sky hearing aids were due to be replaced in the summer of 2018, compatibility with the school's Roger transmitter wasn't an issue. We were free to explore other options, other brands, and even a different style of hearing aid.

Since being diagnosed at age three, Julia always wore Phonak behind the ear (BTE) hearing aids. BTE hearing aids are robust enough for the demands of somersaulting kids. They're also heavy compared to the other minuscule devices now on the market. Since Phonak wasn't offering iPhone connectivity, Julia chose Oticon OPN receiver in canal hearing aids.

And another adventure began.

The Oticon aids were magnificent at first. Julia streamed music from her iPhone during just about all of her waking hours. The batteries (now size 312 rather than the bigger ones we'd been used to) lasted about three days. She was happy though and really enjoying a typical teenagery phase of ignoring the world in favor of whatever the kids are listening to these days.

A couple of months into the Oticon experience, she started having ear and jaw pain. It got so bad that Julia couldn't wear her hearing aids for the whole day. She'd have to take one or the other out to relieve the pain. We consulted with the audiologist, gave the orthodontist a thorough talking to, and settled on new ear mold impressions. 

The new impressions were significantly different and pain-free. Since most kids don't have close monitoring on the shape of their ear canal, no one knew that orthodontic bite adjustment could cause such changes. 

Christmas 2018 was pain-free, but the right Oticon hearing aid was not working. We replaced the receiver because we were told that the thin wire and somewhat moisture sensitive part in the ear canal can go bad. We sent the right hearing aid in for service and received a brand new replacement. We sent both hearing aids in for service and received brand new replacements. The problem was only ever with the right hearing aid which would periodically get very quiet or sometimes mute completely. Eventually, we found that changing the tiny wax guard on the end of the receiver would fix the problem. Julia was having to change the wax guard on the right hearing aid every day.

Frustration peaked about the time we sent both the left and right hearing aids in for service. The thought was at that time that the two aids weren't communicating with each other. Perhaps the left one was muting the right one? We were pretty much at wit's end. Julia doesn't like having to mess with her hearing aids. She puts them in, they work, she lives life. This constant futzing was not at all acceptable. She was having to wear her Phonak hearing aids while the Oticon ones were being repaired and was ready just to go back to the old aids even if they were pretty worn. At least she just put them in and they still worked. Reliability is more important than music streaming.

It was an anxious time in which my husband and I considered the possibility that receiver in canal hearing aids just didn't work for her and we'd really screwed up. We were outside of the trial period and wouldn't be able to get new hearing aids for three to five years. Stress levels were high.

Eventually, I took the two hearing aids and compared them to each other. There must be some reason this only ever happened to the right side. It was then that I noticed a difference in the position of the receiver in the custom ear mold. On the left side, the receiver sat back in, but on the right, the receiver was right at the edge. Perhaps the receiver was getting jammed into Julia's ear canal and somehow squishing the wax guard in a way that made the hearing aid sound quiet or mute completely.

A side by side comparison showing both the change in ear canal shape and the
problematic position of the receiver in the middle ear mold. It's not good to have it
hanging out of the end like that!

I got them in reverse order in the picture, but the most curved canal on the
minty colored mold is from an impression taken in August 2018. The blue
one is just a few months after and the clear mold is from March 2019. The
orthodontist is straightening her teeth and her ear canals.

We returned to the audiologist and by March had comfortable ear molds with a recessed cavity for the receiver that didn't cause it to mute the whole hearing aid. Just like that, the Oticon OPN hearing aids were wonderful again. Music streams. Volume adjusts with an iPhone app. Wax guards only need to be changed every six weeks or so. All is well.

We must have stumbled onto a bunch of circumstances that were previously unknown or just don't impact that many kids. It complicates diagnosing issues that Oticon just sends new hearing aids with no diagnostic report. Apparently, they're too small to really do any actual repairs and so they don't tell you if there's a software problem or user error or moisture damage. The lack of useful communication wouldn't have been an issue if the Oticon service had fixed the problem, but since we were still in the same place after multiple "repairs," it was an added frustration.

Ear mold drama aside, she loves the size and sound quality of the new hearing aids. She put the Phonak hearing aids in for a little while recently and said that the world sounded "sad." It seems like the Oticon aids have a better strategy for reducing background noise, but that's just something I've pieced together from Julia's occasional reports. Now they just work, and for that, we're very grateful.




*FM is now an outdated term because technology has changed and it's no longer accurate. The microphone a teacher wears to transmit sound directly to a student's hearing aid is now called a HAT (hearing assistive technology). This serves a dual purpose of being technically accurate and making me feel old.

Tuesday, February 12, 2019

Watching It Burn - An Adventure in Theater Accommodations

At the beginning of November, I happened upon a news story about the traveling Broadway production of Hamilton making its way to nearby Pittsburgh. 

Huh, I thought. I’d really like to see that. 

Even after research revealed staggering ticket prices, I still felt like I wanted to go to there. That’s really saying something. 

We embarked on a three-month journey that began with an online waiting room with a randomly assigned number in a vast queue (at one point it said there were hundreds of thousands of hopeful theatergoers, our number was 837) and ended with our minds blown at the January 27th matinee. 

The show was at Pittsburgh’s Benedum Theater and in the days leading up to the ticket release, I researched their captioned performances. Each run concludes with one closed captioned and ASL interpreted performance during the matinee on the last day of the show. I sort of knew this because our cued speech instructor was gearing up to interpret Mary Poppins while she was giving us lessons. She told us how she was trying to decide whether to fingerspell supercalifragelisticksexpialidocious or just print it on a sign to hold up at the appropriate time. I never did find out what she did. 

The Benedum is a beautiful venue. We arrived WAY early for our show,
but the theater is so interesting we were quite entertained by staring at the ceiling.


At any rate, trustarts.org confirmed that the very last show would have captions and interpreters. A positivity campaign to shift our feelings from angst about waiting so long to see Hamilton to healthy anticipation that made the winter pass pleasantly was quite successful. We secured our tickets and started listening to the official original Broadway cast soundtrack. 

Note: in the days before the show, I went back to the website to figure out where to get the captioning device. They’d added two additional captioned/interpreted shows! We really didn’t have to wait until the end of January although I don’t know how I’d have figure out which extra shows had accommodations. But I do know that the devices are picked up from guest services and you have to leave a photo ID to check one out. 


The Hamilton soundtrack is addictive. Within a few weeks, we were memorizing lyrics. I finished the Ron Chernow biography just after Christmas. We watched every YouTube Hamildrop and even several episodes of Drunk History. By showtime, I could *almost* sing/rap Angelica’s part in Satisfied. We were three people prepped and ready for historical hip hop. 

Our morning went according to plan and by 12:30 we were in our seats, captioning device in hand. Benedum guest services advised leaving the unit powered off until Hamilton started since it wouldn’t start displaying until showtime. At about 12:58, Julia turned the device on. It displayed two rows of rectangles, each a full-color advertisement for an upcoming show. All-caps captions appeared a sentence or two into King George’s introduction to the show. And then I was swept away to “a forgotten spot in the Caribbean” and was only peripherally aware of the problems that ensued. 

That home screen flashed on a few times and then there was a smell, but I didn’t connect the plasticky odor of impending electrical fire to the captioning device. In fact, I thought the burning smell was some sort of stage effect though I couldn’t figure out which one. (This was well before Eliza burned everything and I didn’t smell that fire anyway.) I scoped out the emergency exits just in case. 

Julia was relieved to make it to the intermission. “This is really hot,” she said. She meant the device, but the show was pretty hot too. 

Not wanting to bother us, Julia tried powering the captioning device off and back on when it stopped working. It was going in and out of service. She turned it off for good when it started to heat up. I sniffed the plastic case and confirmed the source of that smell. Julia elected to go through the second act without a captioning device. 

The Benedum guest service lady was very apologetic and set the device aside for service or perhaps the garbage. We learned that these handheld devices are on their way out anyway. Broadway (the "real" one in NYC) is using the GalaPro app which allows theatergoers to use their own phone to access captions. As this technology makes its way across the country, there will be no need for special captioned shows because the app will work at every performance. GalaPro will silence phones and allow adjustments to brightness to keep the screen from emitting its distracting light. As an added bonus, one's own phone is unlikely to spontaneously combust. I hope.

In summary, we now have a plan in place for instances when one person needs to quietly notify the rest of the family that some hunk of junk is about to explode. And we know that preparation for live theater is key. With enough at home singalongs, the technology is optional but we do look forward to giving the new app-based captions a go.

Tuesday, December 11, 2018

Fighting the Craptions

Our family has been consuming captions for almost ten years now. I've written about it before, and I'm happy to report that things are getting better in the world of captions. Netflix is doing pretty well on the captioning front. We even have a semi-local movie theater that has open captioned showings of new releases. It's far and away better than the tricky three-line digital receiver box jammed into the theater seat cup holder.

Still, bad captions exist. They're called "craptions" which is a little too cute for as annoying as they are. Activists are working hard to educate content creators about how and why they should create accurate captions for every video. There's even a #nomorecraptions campaign.

You can buy t-shirts and hoodies to show your support for the 
#NoMoreCraptions campaign and to bring captions to YouTube!
"I would buy this" to be notified of the campaign's next print run.

YouTube


On the spectrum of bad captions, YouTube is a major offender. If you upload a video without captions, YouTube will auto-generate captions. Here's what YouTube says about "automatic captioning:"

Captions are a great way to make content accessible for viewers. YouTube can use speech recognition technology to automatically create captions for your videos. These automatic captions are generated by machine learning algorithms, so the quality of the captions may vary. 
(https://support.google.com/youtube/answer/6373554?hl=en)

By "the quality of the captions may vary," they mean that sometimes the auto-captions are great. Other times they're laughably incorrect. Sometimes they print dirty words on the screen that are nothing close to what was said in the audio. In short, you might not want to turn these on at all until you're ready for your sweet child to learn four-letter words.

YouTube content creators can edit the auto-generated captions to correct these errors if they take some time to review the captions on each video. They can also use Rev to have professional captions generated by real human beings. The YouTubers just need to commit to better captions. That's what the #nomorecaptions awareness campaign above is hoping to achieve. 

Network TV


Big networks are still struggling to provide quality captions everywhere. We watch late night comedy on YouTube using each show's channel. The captions work well enough on YouTube. We watch SNL using the NBC app on Roku and those captions are very inaccurate. They paraphrase and just plain get it wrong sometimes.

Commercials are mostly uncaptioned across all platforms.

Fight the Craptions


The #nomorecraptions campaign suggests sending an email or leaving a comment on YouTube channels that don't provide accurate captions. They note that you should expect to be told to turn on the auto-generated captions owing to the fact that said YouTuber has never looked at the auto-generated captions. 

The FCC provides a complaint mechanism for inadequate captioning. 

NCI (http://www.ncicap.org/viewer-resources/viewer-faq/#C11) provides the following advice about filing a complaint:

The Federal Communications Commission (FCC) has issued rules about closed captioning, and they have established a complaint process. Before you proceed, be sure your own equipment is in good working order.
You should first complain in writing to your programming distributor (i.e., your cable or satellite TV service, or the TV station if you do not pay for cable, satellite, or another subscription video service). If you are paying for cable or satellite television service, your provider is responsible for resolving any captioning problems even if the problems might be in the program feed they are receiving. Check your provider’s Website about who to contact regarding captioning problems or look up the contact using this Website. Complaints that are polite and specific with complete details are the most effective.
Keep a record of your complaint. If the problem is not resolved, then you can file a complaint with the FCC. There are a number of rules for filing complaints, so you should read and follow them to be sure your complaint will be considered. Your complaint has to be very specific (date, time, stations affected, etc.). Click on this link to see the FCC’s closed captioning guide, which includes information about filing closed captioning complaints. NOTE: The National Association of the Deaf (NAD) suggests that you submit your complaint to the FCC at the same time as you notify your service provider so that the FCC gets a better understanding of the types of problems people are having with captioning.
Here's a direct link to the FCC caption complaint center: https://consumercomplaints.fcc.gov/hc/en-us/requests/new?ticket_form_id=36040

Awareness of the need for accurate captioning is growing. Don't accept the craptions!

Wednesday, September 19, 2018

A&E Documentary: Deaf Out Loud

***spoiler alert: watch the Deaf Out Loud documentary first, spoilers follow!***

I found out about the September 12th premiere of A&E's program Born This Way Presents Deaf Out Loud a few weeks in advance. I looked it up and was pretty excited to watch. The promos made it look like a program that was going to showcase all of the ways to be deaf (or Deaf).

It was difficult for us to lay eyes on the show. We unplugged from cable a while back and unlike that DirecTV commercial that plays every time I watch a YouTube video, we didn't replace it with any paid service. It took almost a week to figure out a way to access the show and when we did, it didn't have closed captions. I'm sure the version that aired on A&E had captions. I suppose we'll never know for sure.

Perhaps it was foredoomed to fail already at that point, but it got worse. The documentary opens by showing a Deaf couple at a shooting range. This was meant, I think, to show the couple's enjoyment of an activity in a way that is different from the way hearing people would experience it. I just don't like seeing people shoot guns on TV. In post-Parkland America, gleefully shooting your Glock falls in the same category as smoking a joint. You can do it, in many states it's even legal, but it's not an endearing activity for a TV show. Or an Elon Musk podcast.

This was the first in a series of stylistic choices that detract from the story.

Our family is finally making great strides in learning ASL. Watching Deaf Out Loud was, I thought, an opportunity for us to see native signers. It's not like we hoped to learn new vocabulary from the show. It simply presented an opportunity to experience a bunch of different people signing. We usually are able to pick out words and phrases we know. It helps our receptive skills.

Deaf Out Loud did this odd camera angle while most of the people were signing. It was a tilted, swoopy thing that cut the head out of the shot and zoomed in on the hands. It made the signs unintelligible, at least to my almost wholly untrained eye. A straight-on camera shot would have been much better. I felt like the program had an undercurrent of this opinion that the hands are the only thing that's important in ASL. Those facial expressions that your ASL instructor insists contribute so much to the meaning? Deaf Out Loud didn't need to show those.

Finally, the documentary fell short in delivering on its main promise to show that there's no one right way to be Deaf/deaf. Two of the three families came off as very defensive of their choices because the documentary didn't provide enough context on the most contentious and controversial topics.

One of the dads had cochlear implant surgery but reports discontinuing the use of his CI due to social stigma. Other documentary participants pointed out the shortcomings of cochlear implants, but this dad was presented as a man that ditched his device because people in the grocery store made comments about it. Surely there's more to it. Cochlear implants are not a miracle cure for everyone. Was there some element of that in his story?

The same truncated storytelling took down the story of another Deaf Out Loud documentary dad. He reports turning off his voice in college to communicate exclusively in ASL. This came across with an air of I-used-to-speak-but-I-don't-anymore-nanana-boo-boo. Surely there's more to it. Other documentary participants made reference to the trauma of intense speech therapy for kids that aren't advancing with speech goals. This was an opportunity for the message to be delivered from a personal experience, but instead, it looked like an instance of extreme tribalism.

My daughter turned from the TV about halfway through and announced, "I don't like this at all." Though my reaction wasn't that extreme, I was very disappointed. I identified with only one of the families. Their commitment to do whatever worked for each individual child was inspirational. The documentary showed their willingness to change course and give each of their six kids what they need to succeed. That should be the message of parenting whether a child is hearing, Deaf, or anything in between.

Thursday, July 19, 2018

Friday, May 4, 2018

Cinematic Experience with Open Captions

Periodic announcements make their way to us with a schedule of "open captioned" movies at a Pittsburgh-area theater, the AMC Waterfront 22. The Waterfront isn't very close to our home, nor is it a place we enjoy spending time. And the movie offerings haven't been too alluring. We don't partake of the cinema very often due to other people and lack of captions. (Closed caption devices tend to ruin the movie.)

Then came an announcement for Avengers: Infinity War with open captions.

After taking in every Marvel movie (with the exception of Black Panther, still working on that one), I figured the new Avengers movie was a film worth seeing in the theater, even if it meant a 45-minute drive early-ish on a Saturday morning. 

The open captioned show times do not occur midday.

Infinity War has not been on my radar. Honestly, the superhero thing has been wearing itself out. Ever since Civil War and Ragnarok, they haven't been as exciting. So it was mostly the captions that brought me out of our home theater. At 10am on a Saturday, I figured there wouldn't be many other people. It might have been the perfect outing.

Except that it was opening weekend for a blockbuster film. I still can't believe they open caption on opening weekend. That's pretty cool when you think about it. The theater was remarkably busy, the feature film's captions were perfection and it was, in fact, Avengers: Infinity War was the ultimate superhero crossover event of all time.

There are just a couple of notes I'd like to pass along to the AMC.

  1. It's weird that the captions weren't advertised. I got a flyer from a third party, but there was no indication I could find online or in the building that the showing would be captioned. Don't you think just about everyone would want to know whether they wanted the captions or not?
  2. A captioned feature film should have captioned previews. And captioned commercials. And captioned stupid pre-preview interviews. If you wonder what you should caption, the answer is simple: ALL OF IT. There were portions of the forever long pre-movie garbage that just had an image on the screen with a voice over. How would that be accessible to someone with hearing loss or deafness? Isn't it pretty rude to make only part of something accessible?
Overall, this was one of the best movie theater experiences we've had. If it was up to me, there wouldn't even be an extended period of "front row" screen facetime extra report madness before seventeen previews, but that's the price you pay for seeing a film in the theater. (Other than the price of admission.) But if there has to be a Coke commercial, figure out how to caption it. Then, going to the movies might really be perfect.

Friday, March 16, 2018

Traveling with Hearing Aids

Before long, summer vacation will be here. It's hard to believe from the daily coating of snow we're getting every day in Pittsburgh, but the kids are entering the last marking period. The last day will be upon us soon.

We don't have plans to travel this summer, but a hearing aid "go bag" remains packed just the same. This spring marks the 10th anniversary of my daughter's hearing aid use and we've developed some wisdom when it comes to traveling with hearing aids.

What to pack

In the early days, I was prone to overpacking and would jam both of our Oliver the Elephant Phonak packs into the luggage. The calm that comes with experience has helped to narrow down the gear to essentials and emergency supplies only.


The Magic Ear Travel Pack

The Hal-Hen drying jar with Julia's old pink Phonak Naida hearing aids inside (the foam part keeps the aids cushioned during travel)
The Phonak-provided drying jar to store the old pink Phonak Naida hearing aids once we reach our destination
A hearing aid case for poolside hearing aid removal
Replacement ear hooks
Replacement microphone cover pads and the little tool used to perform the replacement
Extra tubes for the ear molds
Batteries
A 50/50 mix of white vinegar and rubbing alcohol in a tightly sealed bottle that's also inside a baggie to prevent leaks (we fill her ears with this solution each night before bed on days when she swims and haven't had swimmer's ear since)
*Not Pictured because it doesn't fit inside Hello Kitty* A dry bag for added moisture protection if your travels take you to the water


All of this fits neatly inside a little Hello Kitty pack. Magic Ear Kids (the book) has a table of common problems and easy fixes using the above list of supplies.

Pro tip: remember to take the batteries out of the travel kit when you're back home. I've lost a lot of batteries to the zippered pockets of bags packed for a day trip. Five-year-old batteries just don't last like fresh ones.

Airport Security

The TSA checkpoint is always a high-stress portion of what's invariably always a long day of travel. On our last flight, my backpack carryon didn't come through on the conveyor belt. It was whisked into a queue for additional screening. Apparently, a rolled up fleece blanket, our snacks for the flight, and a bag of leftover Cocoa Puffs triggered a special search. Already flustered by retrieving my shoes and reassembling various electronic devices and a winter coat, it occurred to me that even the best-laid plans are no match for TSA agents. The best one can hope is that it will go smooth-ish.

Here are a few things to remember when traveling with hearing aids, especially for children:

Kids under 12 DO NOT have to remove their shoes. The shoe rule changed during my daughter's childhood, so we had the pleasure of pulling her shoes off until she was seven (that's a guess, I don't remember specifically). Then one day they told us she could leave them on. A chorus of angels sang and then the very next airport made her take her shoes off. But the rule at this moment in 2018 is leave the shoes on under age 12. Enjoy that while it lasts!

Leave the hearing aids on to go through the metal detector. Occasional stories have come to my attention over the years of kids being asked to remove their hearing aids or cochlear implant processors to walk through the metal detector. The TSA should not ask you to remove hearing aids. If they do, you should politely explain that the metal detector is not damaging to these devices and the user will not be able to follow instructions without them. The above-referenced article does indicate that some cochlear implant body worn processors can be damaged by the x-ray machine. To be extra sure if you use a device other than a hearing aid, ask your audiologist.

The Long Car Trip

Give the hearing aids a home in the car. We've driven to Disney World and after fourteen hours in the car, trash is just one of the discomforts. Snack garbage, blankets, boredom busting activities, and assorted junk is everywhere. Be sure there's a safe place to stow hearing aids and a protocol for removal. My daughter reaches into the front and hands me her hearing aids when she's ready to take a nap or just a break from listening to her parents' blather. An extra hearing aid case in the cockpit is a great idea or at least a cup holder or car pocket cubby that is a dedicated safe place. Don't put the hearing aids in a napkin or something that looks like garbage. Our policy has always been that the hearing aids are either in her ears or up front in the little center console pocket when we're in the car. If you start putting them in all kinds of odd places, you significantly increase your risk of losing them.

Don't leave hearing aids in the hot car. High heat will damage hearing aids. This poses a problem when you're having a day at the lake or even a walk on the beach when your hotel is far from the water. It's often not appealing to leave the hearing aids at home or in a hotel room and then go without them for fifteen minutes until you reach the place where you're doing the thing that you can't expose your hearing aids to. This is a great application for an old pair of hearing aids. We leave the "good" hearing aids, newer and used daily for school, safe in a drying jar at home or in a hotel room. She wears the old aids and leaves them in a case that we put in a dry bag at the beach. Other strategies we've used are packing a small cooler even if we don't have food. The main things you want to avoid are the glovebox (that's a mini-oven) and direct sunlight. Try to keep the hearing aids at the same temperature they'd be if they were on your head.

Traveling with hearing aids makes planning a trip just a bit more involved. Plan ahead so you can spend your time enjoying your destination rather than dealing with lost or broken hearing aids.