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.



Thursday, January 25, 2018

Julia Writes About Surfing

Julia had the opportunity recently to write for the Hands & Voices blog, Raising a Deaf or Hard of Hearing Child.

SILENT SURFING


by Julia Resciniti


As I stepped out of the car, my feet felt the sand. It seemed to express a revolt from my sandals as it gathered on my feet and wriggled underneath them. The sensation was so foreign compared to the sand-less climate of Pittsburgh that I had grown up in. The sand had demonstrated an abnormal desire to worm its way onto every floor, into every crevasse, onto all articles of clothing, and to my own personal annoyance, into the heart of every lock of hair. But in my youthful nature, I was heedless of the ubiquitous sand that my feet sank into at every excited prance, slowing me until it seemed that I was in a nightmare where the ocean waited just out of reach because I was simply running in place.

Despite the baleful sand, I flopped down on a pastel pink board that was laid on the ground by people in wetsuits. They orbited the board methodically, stopping to congregate around my parents, the perfect contrast to how I had sprinted through the same area. Click here to read the rest...

Saturday, December 9, 2017

The Magic Ear Kids book is here!!!

Magic Ear Kids: Stories About Parenting a Child with Hearing Loss is now available from Amazon in print and kindle editions!

"Hey Julia, do me a favor and pretend you're reading my book."
"Okay, Mom."
*Snaps a few pictures and reaches to take the book back.*
"I was really reading it!"

A compilation of true stories about Julia's journey with hearing loss, Magic Ear Kids takes some of the best posts from this blog and continues the story through the intermediate and middle school years. One early reader (not Julia) declared some passages to be laugh out loud funny. Of course, there's a lot of frustration and a hearty helping of triumph. The work is far from over, but we're far enough along to know that life with hearing loss offers some challenges and limitless potential. I hope other parents and the professionals that serve them will enjoy reading about our experiences.

Tuesday, August 22, 2017

Coming Soon... a Magic Ear Book

It's been on my list of goals for a little too long to compile the stories on this blog into an anthology for parents of kids with hearing loss. I've been storing up the middle school stories too, bad FM boots and channel surfing (FM transmitter-style). Batteries and ear mold dysfunction, it's all still happening. It's just, happily, more of a background topic.

My camera roll is full of ear mold pictures as we're still having trouble
getting a proper fit.

This fall, I'll be working on organizing our journey into a cohesive narrative that will be available in print and Kindle additions on amazon.com by the end of the year.