Jun 22 2016

“Cued Speech isn’t a language.”

Blog topic written by Hannah Mann, A Croaking Dalek With Laryngitis

…and it doesn’t need to be. Cued Speech is a communication mode that visually represents an existing language in real time. That’s why professionals make a distinction between Cued Speech, Cued English, and Cued language.

Sometimes I’ve heard that statement used as a put-down: supposedly, because Cued Speech isn’t a language in and of itself, it either can’t be used to instill language into children, or its input will be fragmentary at best. My experience says otherwise.

As a rough analogy, you could say the same about writing. Writing itself isn’t a language; it’s a way of representing language in another format. It codifies sound into print… mostly. (English is a stupid, stupid language.) Likewise, Cued Speech also codifies sound into a visual format, and much more faithfully than written English (again, stupid language). Both are valid, successful teaching tools and modes of communication.

I think part of the confusion comes from the frequent misidentification of Cued Speech as a variant of Visual Phonics. Unlike Visual Phonics, Cued Speech was tailored for smooth transitions between different handshapes and placements, which facilitates real-time communication– in other words, you can cue as you speak at a “normal” pace. As far as I know, that isn’t feasible with Visual Phonics and inhibits its use for immersive language acquisition. However, because the two systems’ basic premises are similar (i.e., visually convey the properties of sound), they often get lumped in with each other.

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May 17 2016

Where the Americans with Disabilities Act Falls Short

Blog topic written by Hannah Mann, A Croaking Dalek With Laryngitis

The ADA is a marvelous legislative tool. I have, however, noticed a disturbing tendency to rely on it as a blanket solution, or worse, a legal bludgeon.  Here’s the thing.  In practice, its compliance rests on three conditions:

1) the needed accommodations fall within the definition of “reasonable”
2) the owners are aware of the requirements
3) the owners are willing to comply

Now, larger businesses usually have the money and the sense to ensure that they’re accessible. Smaller businesses, especially those in older buildings… well, it depends.

Take those smoke alarms with flashing strobe lights, for example.  A small-to-medium hotel may get a grand total of 1-2 deaf guests a year, if that.  Legally, new hotels or hotels undergoing renovation are required to purchase and install strobe lights in a portion of their units, and ideally, they’d do so posthaste because, yannow, preventable death by immolation tends to puts a damper on business and common decency.

But. What if it’s a tiny bed-and-breakfast?  What if the accessible rooms are full?  Or the hotel is in an older building and hasn’t gotten around to updating the alarms?  Or the hotel is newer, but for whatever reason, they aren’t ADA-compliant?

You could always file a Title III complaint.  First, though, you’ve gotta collect proof of the discrimination (photos, written documentation, etc.), write a letter, and mail it to the US Department of Justice, where it will be filed along with, I don’t know, 10,000 or however many other cases they’re handling on that given day.

Or, better yet, you can have a sit-down with the owners and tell them, “Hey, just so you know, to make your rooms accessible to anyone with hearing loss– especially older tenants– and ensure their safety, you can swap out your smoke detectors with these alarms and write it off as a business expense.  Plus, you’ll be in the clear legally.  If finances or labor are a concern, you can start with the legal minimum required and swap out as you replace older alarms.”

However, neither option resolves your immediate problem when the hotel isn’t already ADA-compliant.  Let’s say you’ve been driving for eight hours straight, you are in the middle of nowhere, you need a place to crash, and this hotel is the least seediest place in town.  Not exactly a plethora of options there, unless there’s an appropriate alarm immediately available and they’re able and willing to install it right away.

Apartments are a bit more clear-cut, but again, that relies on 1) the owners’ and builders’ awareness of ADA requirements and 2) the owners’ and management’s willingness  to accommodate you, rather than give you a difficult time over the “reasonable” stipulation.  (It also depends on whether you rent from an individual owner vs an apartment complex.) If and when the apartment does install flashing smoke alarms, you won’t be able to take it with you when you move.  So, you’ll have to repeat the process all over again with the next place.

Instead of relying on others’ foresight and goodwill in being ADA-compliant, why not focus our energies on finding solutions that allow for accessibility on our own terms?  The flashing smoke alarm is a perfect illustration of how we can close that gap between ADA mandate and reality.  Modern technology allows us to create portable smoke alarms that we can take with us when we move to a new place, visit a friend’s house, or travel. In fact, Gentex  and BRK both have their own lines of flashing smoke alarms that are portable.  Although the ones I’ve looked at seem to be a bit cumbersome (and friends’ feedback confirm this), it’s a start.

That, to me, is true accessibility, not going through a lengthy explanation with just about every vendor on what the ADA requires and hoping they don’t find some excuse to wiggle out of it, trying to determine who’s going to pay for it, or weighing if it’s worth the hassle.

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Apr 19 2016

Who’s Really Smart? – by LeAnn Caseria

Blog topic written by LeAnn Caseria

I took one of those online tests….this one was “what level of education do you have?  Let us guess.”  Then by a series of questions, it was supposed to know how far you’d gone in school.   I was still feeling a bit sheepish about a spelling test that I’d bombed last week, but I had time, so I took the test and it guessed that I had a “PhD”!!! No way, I wish… I’m not even close to that in schooling.

This “you must have a PhD” just made my day, which is kind of sad.  It’s just a silly test and most of the answers I knew because I work at a middle school.  Eighth grade Language Arts has helped me to brush up on my Shakespeare, and this year I’m helping some students in Science which reminded me about the “Theory of Relativity”.  I love my books but don’t think of myself as either smart or unintelligent….normally, it doesn’t matter to me.

So why was I feeling so darned pleased with myself that I scored well on this silly online test?  Pride?  Maybe…but really, it is because of my hearing loss.  The truth is that hearing loss makes me feel less intelligent.  Struggling to understand directions during a work meeting or at a recent computer training, (something I used to be a whiz at) I couldn’t understand the instructors directions.  When simple things are now challenging, it’s hard to feel “smart”.

Then there are the store clerks, like the guy at Fred Meyer, who raised his voice until he was almost shouting.  But the louder he got, the faster he talked, so the words all ran together.  Keeping the smile frozen on my face, I finally figured out what he was asking and tried to get out of the electronics dept. with as much dignity as I could muster. I know this type of thing happens to many of you and I feel like we’re all in a secret, but frustrating, club.  Many of your stories are similar, my personal favorite being when you couldn’t hear what the waiter was saying, so he kindly brought you a menu in Braille.

I tell my students that they should work hard to be the best “them” that they can be.  That we ALL have challenges and that the most important things are being kind, compassionate, considerate of others and NOT GIVING UP.  But when I see them struggle, because somethings not easy, they too, often think they’re not “smart”.   Reminding them of their strengths, I show them how much they’ve improved.  I see the questions in their eyes and wish I could inject them with the confidence that they desire.

Scott Christ writes that smart people are compassionate, imaginative, humble and appreciative (www.lifehack.org) “They view themselves as a small piece of a vast world and they know they have the ability to do great things.”  In his article, he lists ten things that smart people do NOT do.  My favorites were…”Smart people don’t focus on the negative.   They don’t let past stumbles dictate their present state.  Smart people don’t expect instant gratification and they don’t go a day without giving thanks.”

What do you do to build yourself up?  Does your hearing loss somedays leave you feeling a little “less” than you should?  For me, I try to spend time each week doing things I’m good at.   I’ve joined a gym, am exercising more regularly and have thanked the owners for keeping the captions on, so that the hearing impaired can understand.  Thanking people is important and I’m trying to be better at that. I read books that I enjoy and have taken up drawing, something that I hadn’t had much time for but want to get better at.  It’s not about being smart or not, it is really about being the best you.  Helping others and being happy with the life you’ve been given.  Hope so, that’s the way I’m trying to go.  I hope you believe in yourself and can be thankful.  Keep sharing your stories, they help all of us…and remember, only do the easy online tests!

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Mar 22 2016


Blog topic written by Hannah Mann, A Croaking Dalek With Laryngitis

One of the hardest things I’ve ever done was study abroad in Beijing for four months, with no accommodations for most of the semester.  I’d enrolled into the full immersion track, which meant five straight days of class every week from 9 to 4, tutoring until 6, and homework until 10pm.  Oh, and it was all in Mandarin; we weren’t allowed to speak in English except on weekends.  The details elude me, but I remember we’d study between 20-50 vocabulary words every other day, usually in a deadline-induced panic to pass the next test.

Most of us had a meltdown at least once that semester.  Mine came when I volunteered to be the class representative for our end-of-semester speech contest (seriously, I swear every Chinese course has a speech contest).

Early in the semester, I’d noticed that one other guy in the program had hearing aids, but I thought he didn’t sign.  He’d seen my cochlear implant, but he thought I didn’t sign, either.  We didn’t run into each other a lot since he was on the non-immersion track, which focused on non-language courses and allowed for about 500% more free time than the immersion students got, so of course they spent that time touring the city and interacting more with natives in one week than we got in an entire semester because we were holed up in our rooms doing homework.

So, we went on like that, hanging out with our own groups, not signing, until one day just before Thanksgiving.  We were in the hallway together, and when he caught my eye, he tentatively moved his hands: “do you sign?”  I responded, “Yes, I do!” And we made brief, hurried plans to sit together at the program’s Thanksgiving dinner just to have a conversation in ASL after nearly three months of spoken Mandarin and English.

Lest this sounds like the beginning to an epic love story: the guy was gay.  Just to get that out of the way. Anyhoo, we did indeed grab a seat next to each other at the Thanksgiving dinner, and started signing while also speaking in Mandarin and English to the others, and oh my gosh. I can’t begin to describe what an absolute mindwarp that was.

Both of us had forgotten vocabulary in English and ASL.  “There was the red… umm… red… oh geez, I forgot the sign for red. What’s the sign for red?!”  Our grammar was all screwed up. Looking back on it, I’m amazed I maintained any semblance of coherency, shifting between three languages at the same time.

It didn’t stop there. At the end of the semester, I had a sign language interpreter and a cued language transliterator for our two-week study trip, because the other CLT broke her leg and couldn’t make it.  We had several instances where I ended up translating for them (or trying to) because they didn’t know a word of Chinese beyond the basic pleasantries.

Language. It does funny things to the brain.

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Mar 15 2016

Finding my Awe – by LeAnn Caseria

Blog topic written by LeAnn Caseria

I went to a party yesterday.  Actually I went to two parties….IN ONE DAY!  This is epic for me, especially with my hearing loss.  The first one was my grandson’s birthday and he is turning three.  So, yes, balloons, pizza, popcorn and a “make your own cupcake” table all included.  Thomas the Tank Engine decorations, happy kids, busy parents, it was loud, nonstop and filled with happy children.

I didn’t spend too much time sitting as I was making coffee, taking pictures and trying to connect with people one on one.  Hearing loss and crowded, noisy rooms don’t go too well together so I try to catch people one at time, focus on just them and use a little lip reading.  A couple of times in the kitchen, someone would come up on my deaf side, lean in and ask me a question.  Luckily it was always family so I just smiled saying, “Sorry, can’t HEAR you”.  I’m really working on not letting parties frustrate me, try to go with the flow, be positive and enjoy.

A little later, I sat for a bit with my brother, ate a cupcake and people watched.  My adorable grandson was running around the tables wearing a Thomas the Tank engine outfit and a big grin.  Giggling he pulled his balloon along while being chased by his friend Molly who was also armed with an enormous grin and a balloon.  Their joy in the moment made us both pause as my brother joked, “That’s what we should all be doing.  When was the last time we grabbed a balloon and ran around in circles?”

It made me think.  I’ve been thinking a lot lately about life, attitudes toward life, the struggles in life and our attitudes toward those struggles.  What do those three year olds have that we’ve lost?  Well, maybe not lost, but buried somewhere.  And I think one of the things is awe.

Awe is defined as a feeling of reverential respect mixed with fear or wonder.  With synonyms of wonder or wonderment, awestruck or to be amazed.

Awe is…being amazed.  Saying “WOW” when you see something beautiful.  It could be the Grand Canyon or it might be noticing the older couple that still hold hands when they cross the street. Today it might be the lady bug that a 7th grader showed me on the playground.  Yesterday, my grandson seemed amazed when I walked in with a huge bunch of balloons at his party.  Seeing his face light up with wonder made my day.

Researchers at Berkeley University(http://greatergood.berkeley.edu) say what we all know, that while young children seem to be wonderstruck on a regular basis, this experience tends to be rare in adults…but that awe is just as important for adults.  Their research suggests that awe has many proven benefits, including increased life satisfaction, a sense of time slowing down or standing still, and a greater desire to help others. They say awe may help people cope better with stress by promoting curiosity and exploration, rather than withdrawal and isolation.  Dacher Keltner, a professor of psychology suggests that we “seek more daily awe” and that we will be better people for it.

So yesterday evening, my husband and I went to party number two.  A small dinner given by my daughter-in-law’s mother.  No balloons and much less noise for my ringing ears.   Six adults in a cozy cabin by the beach. The waves were crashing on the rocks as we drove along the bay and I was working on “finding my awe”.  The sounds and sights of the stormy beach made that easy.

Later we relaxed after a lovely meal and I found my awe in admiring the way that my son and his wife have transformed this beach cabin into a “home” that is uniquely them.  I found more awe on the way home, watching the moon shine over the water and thinking of what a fun day it had been and how fortunate I was.

I have friends that list what they are grateful for and another that has been keeping a journal of thankfulness for over a year.  All great ideas to look for the good things in our day.  For now, “finding my awe” is working for me so I’m making it a habit. They say that it takes 21 days of doing something before it becomes automatic.  Right now, I don’t care because “seeking my daily awe” is working.  I guess all I can say is “Wow”.

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Mar 08 2016

We Aren’t Outliers

Blog topic written by Hannah Mann, A Croaking Dalek With Laryngitis

“You had strong family support.”

“You went to a good school.”

“You got lots of one-on-one time, didn’t you?”

“You were exposed to other cuers.”

Sometimes, when I tell others about what Cued Speech had done for me growing up, someone will mention the above, as if those factors somehow negate or diminish Cued Speech’s efficacy. It’s like they’re implying that Cued Speech itself didn’t work, that the other factors had to compensate, or that I was the exception that proved the rule.

It’s true that family and educational support are immensely important, and often if not usually a deciding factor in a child’s success. Home and school are where the child spends most of his time. However, communication access and literacy depend highly on what the people in those environments are equipped to provide.

In a residential school, or a mainstreamed program with a strong Deaf presence, everyone is either d/hh, more visual-oriented, or have (ideally!) received training and support to meet language requirements. Staff are able to act as appropriate language models, so that ensures communication access and, to some degree, academic success.

Outside of residential schools, though, getting that access to appropriate language models can be much more challenging– not to mention the complexities of using a manual language to impart literacy in a completely separate aural language. That’s if you have access to ASL; more often, what I’ve seen is a mixture of auditory-verbal therapy and manually-coded sign systems, and the results can vary just as much from very, very good to very, very bad. In fact, many cueing parents took up Cued Speech precisely because their local programs or residential schools were not a viable option for one reason or another.

In evaluating different approaches in d/hh education, we need to look at that approach’s overall results, not just specific examples. We can’t cherry-pick outliers to prove our point. That’s probably why those statements at the beginning somewhat annoy me, because in my experience, success at attaining language and literacy through Cued Speech is thenorm, not the exception.

In my experience, signing d/hh people who can write or read well tend to be in the minority. On the flip side, cueing d/hh people who have those odd grammatical or spelling flukes– not typos, but more like what you might see from ESL speakers– are the exception; the rest read, write, and talk like native hearing speakers (with varying degrees of a “deaf” voice). I’ve had more than one person tell me that they wouldn’t know I was deaf just by reading my posts.

The studies on Cued Speech that I’ve read bear this out– in fact, I haven’t yet found any studies with negative results on Cued Speech’s use. (I do recall one with “meh” results in a group of hard-of-hearing students, but that’s about it.)

I suspect that you won’t see such consistent results among deaf signers mainly due to these reasons:

  1. The learning curve involved in picking up any manually-coded or signed system, which demands greater commitment and effort from parents and teachers over the long term, so you’re much more likely to see a wider variation in usage and proficiency.
  2. The linguistic and conceptual gap between sign language and spoken language (or even just two different languages). You can patch that gap somewhat, but it’ll never replace incidental learning through full linguistic immersion (and not necessarily just reading and writing).

This isn’t to make Cued Speech out to be a magic bullet that bestows language and literacy the instant someone starts using it for their kid. What it does do is enable one to visually “recode” a language she already knows, without the delay of learning and translating through a second language. In this way, the d/hh kid is put on the same playing field as a hearing child for literacy and language acquisition, so d/hh cuers are much more likely to pick up spoken/written language at the same pace as their hearing counterparts.

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Feb 23 2016

Sara Lundquist’s Top Ten List for Hearing Loss

Blog topic written by Sara Lundquist

It is a tad late for the start of a list for the first of the year but I think we can do this exercise at any point of the year. It makes us put things in perspective, to marvel at the changes, the normality of things people would think are not normal life. I decided to look at this past years and would make a list of 10 things I have noticed and learned. I was able to get a hold of my audiogram from 1996 when I was 19 years old. I was in college and attending the University of Wisconsin and studying Communicative Disorders. I had a conductive loss at a 30-35db loss. Which in all reality I could have been wearing hearing aids back then. I am now 38 and I have a mixed loss that ranges from a 60-85db loss. That is a big difference. Will it change from this point, I don’t know but if it does I know there will be frustrations but I feel I will be better equipped to handle it.

  1. Always carry hearing aid batteries with you. I learned the hard way this last week. I decided to leave my bag out in the car after lunch and I was subbing in science. Well both hearing aid batteries went dead. I had about 3 hours of the day left to go with no break to run to the car. Thank God we were watching a movie very little talking and listening had to take place. It made me realize I need to learn to speech read more than ever which will be my number 2.
  2. I hear with my eyes as much as my ears. I need a big boost in speech reading. I can do a word here or there but I need a lot more practice. I lack in this area greatly. Although I have done a few experiments on my own while listening to someone I really do concentrate on their face. I will close my eyes at times and my comprehension really goes down. I need that visual; I need to see it as much as hear it.
  3. Hearing aids are not miracle aids. Yes I really rely highly on my hearing aids. I recently told a friend who is deaf, I can’t sign proficiently, I can’t read lips for a full conversation. I rely on the hearing I have. I have become great friends with the phonak and starkey hearing aids I own. I don’t have perfect hearing with my hearing aids but they make up for a lot of lost ground.
  4. Ear molds are better than domes. This is an individual thing but wow a big difference for me. I was given domes then got moved to closed power domes in my hearing aids. They annoyed me and I could hear better with my finger in my ear with them. When I bought this up I was told it just took time to get used to. I then went to another audiologist and they told me my hearing loss was to great for the domes and that is why I was having the problem. I was told I needed the ear molds and I sure can tell a difference. What I learned from this, you know what you need. If it doesn’t work for you and you have a finger in your ear, it isn’t working. I will never use domes again. You can change doctors nothing is set in stone.
  5. You are not alone. Family and friends supported me and listened to me but I needed to find someone who understood me. I have found friends online. They understand hearing loss. They can laugh with you and help through the tough times. I urge anyone who is going through a trial to seek out a group that understands. As a hard of hearing friend says you need your tribe. You need the people who walk in the same shoes as you do. Seek them out!
  6. Car radios suck. Ok so I am blunt and to the point. Maybe this again is just me. I try explaining to my husband I can hear the music and the beat but I very seldom can make out the words. I can hear parts of words but it kind of sounds like a broken foreign language. I will keep the radio on I like music but the words nah can’t do it. But I have never been able to really listen to the music and get all the words so maybe this isn’t such a new thing.
  7. I have become to love the assistive listening devices I have. I was very stubborn at first I didn’t want to try these. I felt that I was not profoundly deaf or hard of hearing so I didn’t need these. I was wrong. I use the streamer on my TV a lot. It blocks out everything but the show or movie we are watching. It makes a big difference. I still use the captions but I seem to be more engaged in a movie if I use it. Otherwise I seem to lose focus and I am off doing something else. When we are watching a family movie I need to be involved and enjoy the time.
  8. Keep my family in the loop. My children know when I can hear them and when I can’t. If I say I can’t hear you they are really good at waiting till we are somewhere else and then ask me. My kids understand my hearing aids. My husband will hook up and ask if I want the streamer on the TV or for the music we are listening to. They support me and that makes such a big difference.
  9. Sign language- I know some but I would like to learn more. When we are in a situation and I can’t hear my kids I would love to be able to use more sign. Today in church I used sign to my son and we understood each other. I hope another class will be offered soon in my area.
  10. Pimping and blinging my hearing aids have become an obsession. Heck if I can go and see all these fun glasses at the eye doctor why do hearing aids have to be beige or dark brown in my case. I can decorate them and maybe no one will see them but I know they are there and sassy.

So here is my list of 10 things I have learned this past year. I wonder what my list will look like in another year.

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Feb 16 2016

How to Write about the Deaf and Hard of Hearing

Blog topic written by Hannah Mann, A Croaking Dalek With Laryngitis

For three years I worked at www.DeafandHoH.com as an editor and writer (Hi Senthil!). Naturally, this entailed a lot of reading about the d/hh community– most of it from hearing writers who had no experience whatsoever with that world. Not an issue per se, but I often ended up having to correct a few assumptions.

There is a right way and a wrong way to write about people with hearing loss. The finer details vary by person– and the best way to find out is to ask– but essentially, the single most important bit to remember is this:

Focus on the person, not the hearing loss.

As a general rule, the only time a person’s hearing loss really needs to be mentioned is in the introductory paragraph, or when it’s directly pertinent—like communicating with hearing peers, or getting accommodations. And, for the most part, hearing loss doesn’t really affect anyone’s ability to do anything except hear, and in some cases communicate, if we’re talking a primarily verbal environment. Take this, for example:

“Despite his hearing loss, he is an accomplished artist.”

OK, look, I’m deaf. I draw and paint. And my first reaction is, he’s deaf, not blind. (Even then, I’m pretty sure there are fantastic blind artists out there who have figured out how to make it work.)

I see this a lot with sports, by the way. You could have this 300-lb. behemoth who can strategically weave through a mob of linebackers with ballerina-level grace and finesse, and some journalist out there would still natter on about the obstacles he faced– of course, referring to his hearing loss.

To be fair, hearing loss is not exactly a picnic, because we do live in a predominantly hearing and auditory world. We will need to find workarounds, and that’s worth mentioning. But that’s just it: they are workarounds, not this insurmountable Wall to be conquered every time we have to do anything. Hell, sometimes it’s even an advantage: I draw and paint because I am an incredibly visual person, and my deafness had a lot to do with that.

For most deaf and hard of hearing people, it is just part of learning to adapt, and many of us aren’t comfortable with being put on a pedestal for living out their daily life, or serving as a stand-in to “inspire” someone. Stella Young has an excellent TED talk on the objectification of inspiration, which is worth a watch here:

Incidentally, this can be a difficult line to walk, even for me. When in doubt, ask someone who’s d/hh. Preferably, ask several. A good place to start, though, is to avoid the following terms, and any like them: Barrier, Obstacle, Challenge, Inspiration, Overcome, and Disability

So. That’s the big one to watch out for. Couple other writing no-no’s I’d include are:

Overt/excessive references to sound. Especially puns.
“Sound and Fury,” “Hearing with Her Eyes,” and “World of Silence” are the ones I can think of off the top of my head. Truthfully, I tend to see these as low-hanging fruit at best, and lazy writing at worst.

…Maybe just leave them out altogether.
The thing is, we’re deaf. For most of us, sound is just not a huge part of our daily lives. I mean, I don’t even notice the absence of sound most times. I don’t have the feeling that it “should” be there (except when I’m wearing my implant, then I’ll start making random tapping noises just to make sure the battery’s working). Even a lot of late-deafened adults find that they just don’t miss it all that much.

Don’t use the term hearing impaired.
This is more of a gentle heads-up than anything else since it is not common knowledge. Although I don’t personally care about “hearing impaired,” a lot of people find it distasteful and even deeply offensive because to them, it implies “brokenness,” or that the person needs to be “fixed.” Unless the person you’re writing about uses that terminology or is OK with it, best to leave that term out of your journalistic vocabulary altogether. “Deaf and hard of hearing,” although admittedly a mouthful, is usually a better substitute.

This feels like a woefully short primer, but the crux of it is, we’re people. Hearing loss/deafness is just one part of our lives. Write about us as people, and you probably won’t veer too far off course. Honestly, that holds true for any group no matter the demographic.

P.S. I know I have been a very bad non-posting Croaking Dalek due to Life, as I’d feared. I’ll certainly be doing my best to return to a regular schedule with things settling down a bit now.

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Feb 09 2016

Strength, Inspiration and our Inner Champion – by LeAnn Caseria

Blog topic written by LeAnn Caseria

Hearing loss came upon me suddenly, there was no time to gradually get used to it. Not feeling the greatest one evening, my husband and I were watching a movie and “Bam!” ….I couldn’t hear out of my left ear, there was this non-stop buzzing going on and my right ear wasn’t doing so well either . Instantly my life was harder, at work it seemed impossible to understand voices, meetings were confusing and then I’d get HOME. Home, my refuge from the world, the place where I was loved and needed but suddenly everyone was mumbling and I couldn’t hear the TV. Daily headaches and vertigo did not help….I was a mess.

When bad things happen, how do you adapt? Where do you get your hope and strength? Do you have a huge untapped inner core of strength that you tap into? And when that’s running low, how do you fill it back up? Do you have a family to rally around you and cheer you on? Or, do you have family that is used to you taking care of them and being their cheerleader? How do you cope when so many need you? Do you smile at your spouse as you go out the door saying “Don’t worry….I’ll be fine” when inside you’re thinking “holy crap, how am I going to get through today?”

If life has taught me anything, its’ that we all need an “inner champion”. That’s that place that you draw your strength from on those hard days. When you’ve been up all night with a toddler who has the stomach flu and you have that important presentation to give at work. You know “those” days when life just is really, really hard and we all know that hearing loss is HARD.

I needed all the strength I could muster to deal with my sudden hearing loss. Life was so different. Would it have been easier if it hadn’t been so sudden? I have no idea, but I was looking for inspiration. In addition to the doctors who were treating me, I saw a counselor who encouraged me to take care of “me” while I was dealing with this. He knew that I loved to read and recommended true stories of people who had overcome challenges.

Josh Sundquist became one of my favorite inspirational people. Since he’d lost his leg to cancer when he was 10 years old, he’d become a Paralympic skier and speaker who shares how you can find hope in whatever hardships you face. Once he shared how he wished that he could go back in time and talk to that scared young boy that he used to be.

Josh said, “I feel bad because he doesn’t know how much good is ahead of him. He doesn’t realize that he’s going to survive the cancer and he’s going to grow up and become everything he dreamed and more. I wish he could know that.” Then he added, “If you’re dealing with some hard situation, I feel bad for you. But I wonder if a future version of yourself would wish you knew right now that things are going to get better.”

I don’t know about you, but I doubt that I’ll become famous for anything…and most days I don’t feel too inspirational. But when I look back to six years ago when I lost my hearing, I see some really good things that have happened. I’m still working and have found some physical therapy that has helped my balance issues. In my job as a special education teaching assistant I get to be with kids who inspire me every day. Yes, it’s hard to understand what they say but I ask them for help and they try. I’ve also become better at asking for help when I need it. And there are so many great people that I’ve met through the local hearing loss association, people that face far tougher daily challenges than I. Their courage and the hard work they put into communication….that inspires me every day.

Yes, things are harder and different with hearing loss. I’ve had to adapt and change. On my worst days I may drink too much coffee, whine and drag myself whimpering through the day…but on those days when my inner champion is strong, I attack that day with a smile and laugh instead of cringe when I have to ask a co-worker to repeat herself again and again. Deciding to be the best “me” I can be….and being thankful every day.

Join us on Wednesday at this week’s Open Chat Night!

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Jan 24 2016

Game Night – by Sara Lundquist

Published by under Open Chat Night

Blog topic written by Sara Lundquist

Why is it so easy to stand up for a cause and take a stand? While we were in school we made posters, joined groups etc… But, why is it so hard to take a stand and stand up and advocate for yourself? Maybe this isn’t a problem for you, but it is for me. Why is it so hard to ask for accommodations or make a simple request? The reality is the majority of people don’t care if you wear hearing aids or have to ask people to repeat something. To an insecure mind, though, asking for these things can be like a large neon sign blinking over your head.

Around Christmas my family was invited to a young married couple’s home for a game night. I had never really talked to this couple before. I had interacted with the wife a couple times and had never talked to the husband. I am talking just a “Hi” here or there so never had said, “I am hard of hearing.” My daughter and I went to the game night and there were 4 families there. I kept thinking, “I should mention something before we played the games. I really should say that I need to be facing people, and not everyone can talk at once.” Did I do that, NO. There were a couple people there that did know of my hearing loss, but it wasn’t their job to inform others. That responsibility falls on me and only me.

The first game was pure torture. It was a game of song lyrics. Are you kidding me, song lyrics! I have always enjoyed music but very seldom know what they are talking about in the song unless I can read the lyrics. We split in two teams and were given a word. The teams yelled out song lyrics that contained the word and the teams went back and forth. I had a hard time keeping track of who yelled what and exactly what they yelled. I felt I had exactly zero worth to this team. I kinda kicked myself— I needed to participate so the next time when they announced the word we were to use, I took the card to read it since I didn’t understand them when they said it. WOW I was yelled at and told I couldn’t look at the card since it was announced for everyone. Then, to make matters worse, I finally thought of a song, so I announced it. A teammate started yelling at me that it was the other team’s turn, so I accidentally had given them a point. At this point I wanted to die. I wanted to fall into the couch—I could feel my cheeks burning red. I was embarrassed and I could tell my teammates were frustrated with me, and I just wanted to go home. I felt like this hurt little schoolgirl that wanted to run home so my mother could kiss and hug the hurt away. There were a few more times I screwed up, but thank God the game finally ended; my team lost. I really wanted to leave, but I stuck it out. I went to the kitchen to get something to eat. The next thing I knew I was getting a hug from a friend who asked if that game was really hard for me. Then another friend came to ask if I was ok. This was another kick, just advocate for yourself. How hard can this be, say something!!!

The next game was a card game with a total of 4 people. What a huge difference—it was fun and I so enjoyed myself. I did make a casual mention that I can’t hear well. The night was fun. I would go back and do it again. What would I do different? I would stand up for myself. It is the New Year and we all make resolutions, although most get broken. This year I vow to realize that I am important. I will stand up for myself and advocate for myself. How hard would it have been for me to say that I have hearing loss and hearing speech can be hard when there is more than one person talking at a time. I hope there will be a game night in the future. I will be proactive, and I will have fun because I have worth.

I can advocate for a cause I can get behind, but I have to get into a mindset that I am also an important cause and I matter also. We all matter, we deserve the same access and the same information. Let’s make it our New Year’s Resolution to recognize that we have worth and we are all worthy. Now I just have to get my game skills in tip top shape for next time.

Join us on Wednesday at this week’s Open Chat Night!

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