A Hearing Loss & Late Deafened Blog

Lessons Learned

In coping strategies, Deafness, Hearing Loss, Lip Reading, Support on July 11, 2014 at 4:22 pm

By Michele Linder

On the SayWhatClub email lists we often talk about our experiences and challenges, and we vent when our hearing ability changes, whether those changes come through progressive loss or through a change in device.  Often we are looking for the lesson in the difficulties we face.

And, yes, there is a lesson.  It’s a hard one to learn over and over again, though surely worth it if we can stick it out.

Take it from someone who has never found benefit with hearing aids… you just have to learn to live with less and less and still be you.  That’s true for anyone with a progressive hearing loss, whether they are aided or not, just as it’s true for anyone who faces a different life than how they started out.

What have I learned in almost 50 years of losing my hearing?  You have to give yourself time to adjust to the new way of not hearing when you have a noticeable dip.  Hearing dips are like someone throwing a wrench in the workings of your life and communication abilities, and for a time you feel wrecked.

gear

It’s a panicky feeling, like you can’t get a handle on things, and you’re always one step short of understanding.  But, after a while, you will start to settle in and begin to get your bearings again. It’s emotionally draining and there are days when you think you can’t cope, but you always do.

I’m to the point where I can’t hear voices much at all, even one-on-one in a quiet environment, but much of the time I’m still successful at lip/speech reading.  I’m always amazed that I can still learn to cope at this level, but in the situations where multiple people are having a conversation I find I’m less and less able to participate.  Therefore, I find myself opting out of those situations where I know I won’t be able to follow the conversation. Not necessarily a bad thing, really, as I’m only opting out of futile situations, not out of life.

There are times when I can be content with being an observer, but more often than not, when others aren’t addressing me specifically or talking one at a time (and by the way, that doesn’t happen very often), I reach the point of feeling like I don’t want to be there and I excuse myself.  It may seem rude, but those close to me know when I’ve had enough and have to walk away.

Thankfully, life isn’t all about talking and hearing and I can have some meaningful experiences even when I cannot hear what others are saying.  It’s like Rachel Kolb says in her “Navigating deafness in a hearing world: Rachel Kolb at TEDxStanford” speech about one of her biggest challenges — group conversation:

“And during those moments (when there’s too much going on to get any of it) it was very easy to think “I can’t.” … but over time I’ve learned one very important thing:  I have a choice. I may not be able to choose what is easy for me or what is difficult.  But I can choose how to use the abilities that I do have.”

Rachel goes on to talk about those situations where she can follow conversation (meeting with friends who know sign language, voice conversations one-on-one, even two-on-one, etc.), and that by embracing the choices that work for her she can still experience things that are richly rewarding.

When we lose more hearing, we naturally focus on what we can no longer do — the ‘can’ts’. But if we are patient and open, we can learn some of our most valuable lessons about how really resilient we are, and the ‘cans’ will come into focus again.

It’s comforting to me to know that no matter if I lose all ability to hear (some days that is my reality) there is still much that I can do.  Part of the reason I resist cochlear implants (CI) — I have many reasons why I’m unsure of whether CI is the right choice for me, and that in no way is meant to be seen as a discouragement for others — is because I’m reluctant to mess with the cycle of progressive hearing loss.  It has not been easy (I’m struggling right now), but it’s what I know.  And I’ve learned so much that is good over the many years I’ve been forced to adjust to less and less hearing.

For me, hearing loss is not the end of the world.  There is still so much that I can do.

 

My Son’s Ears

In Hearing Loss, Miscellaneous Ramblings on July 8, 2014 at 10:05 pm

 By: Sara Lundquist

IMG_1261My son has been a perplexing little boy the almost 6 years he has been alive.  Henry was born 6 years ago in August.  He has been a joy but we have had so many medical scares and trials in his short life.  I sure know we could have it worse but I tend to think what is going on with your family or yourself at this time is real and shouldn’t be downgraded by the phrase, It could be worse.

Henry was a very reserved baby.  He has a wonderful smile but he didn’t babble much, or interact with others.  We would notice he liked to play alone and was very particular how he played with toys.  Not much playing but organizing and lining them up.  The other things going on with Henry were 105 degree fevers and febrile seizures that would come about every three weeks for a year.  Just a very scary time in our lives.

About the age of 18 months our doctor started to get concerned.  Henry was not babbling.  At the age of 2 there were still no words.  I had never heard a momma or dadda, just a look and a smile.  This is when our doctor was focusing on autism and the nurse was focusing on hearing loss.  Henry had his first hearing test at about 2.5 years old.  He tested with a hearing loss but I was told to just wait and see he had just been sick.  We have been going back to this audiologist every 6 months ever since.  At about 3.5 years old he tested down in a moderate loss range and it was decided to put tubes in his ears and clip his tongue to see if language would come any earlier.  The surgery was deemed a success.  Language started to come and his hearing tests improved some.  The doctor was still pushing the autism diagnosis so we waited a year for an appt and yes we were given the diagnosis.  I look at him today and there are some little things I see that are on the spectrum but I am not sure if that is all what is there.  The next couple years were Early Childhood Special Ed, more hearing tests, a grand mal seizure, neurology visits and enjoying our son.

We fast forward to this past year and kindergarten.  Henry started the year failing the school hearing test.  We were introduced to the Deaf and Hard of Hearing teacher.  Henry wasn’t on her full caseload but a watch case.  She visited his classroom and got the FM system working that every seat in the classroom would be a good seat for hearing the teacher.  She was with us at the IEP meeting to explain how he was hearing and why the importance of talking to his face not his back.  She told of not being able to passively listen to other children in the classroom but would have to focus on one to get the information being said.  This was one of the greatest blows to me ever as a mom.  I felt like a failure.  How did I miss all of this.  My mind had been so focused on autism, seizures, and IEP’s I never gave hearing loss much thought.  HOW did I miss this!!!  I grew up with mild hearing loss, I grew up in a family with hearing loss.  I heard it for Henry and my mind just swept it under the rug.  Everything else at the time seemed to trump this issue.

The school year has ended and summer school has begun.  Henry is having a lot of problems learning to read, sounding out words and rhyming.  The teacher is saying learning disabilities I have the gut feeling it is his hearing, or some of it.  I feel I wasn’t there for him on this issue and I need to get educated about children and hearing loss.  When I was at Starkey Hearing last month I was surprised with a hearing test and new hearing aids.  I was so shocked at this point that I was left speechless when they asked to test my son and provide anything he would need.  I denied their offer I just felt I was given so much already.  I got home and told my husband about the offer and we decided yes it would be nice to have an opinion and test given by an audiologist that has no ties to our school.  Low and behold they called us and again offered the hearing test and anything else he needed.  Last week my husband, Henry, and myself travelled the 3 hours back to the Twin Cities and had Henry’s hearing tested.

I now know Henry has a mild hearing loss.  We are just going to monitor his hearing at this point, no hearing aids.  She agreed with the FM system and front center seating.  I have emailed all the test results to our Deaf and Hard of Hearing teacher.  She will be meeting with us before school.  I sure know that it could be a lot worse than mild hearing loss but I also know how that can drop and how it can affect learning.  I will be his advocate and be in his corner. I am Henry’s mom who happens to be hard of hearing, I hope I can be a good role model for him that life can be full.

 

Captioning Options

In captions on July 6, 2014 at 5:38 pm

By Chelle George

Last week I had the opportunity to experience TypeWell, “A system for capturing spoken content and generating an immediate meaning-for-meaning transcript.” Kate Ervin, executive director of Typewell was in Salt Lake and offered to give us a demonstration before leaving town. Reading about it online, I came up with the above description and wondered how it differed from CART.

She came in for my speech reading class putting a lap top and a Kindle Fire in the middle of the table, each facing different sides. She sat to the side with her laptop in front of her, ready. The previous week I told my students she would be there but all three of them had no idea what to expect. (Yes only 3, summer is hard on classes due to vacations plus it’s twice a week in mornings which makes it hard for working people to attend.) A long time HLAA chapter member came in too and once we started talking, the words appeared on the screens in front of us.

captions at a meeting

One of my students is recently deafened due to acoustic neuroma and she was thrilled to see speech transcribed in front of her and her husband was happy to know these kinds of options exist. My other student is a college student who has gone through most of her education without any CART or captioning at all. She was told it was a hassle to sign up with the disability resource center and that a note-taker would work just fine. All this time she struggled through classes when this was available? She could see where it would have made her college time much, much easier. The other HLAA member and I are familiar with live captioning but we love options.

typewell 3

How is TypeWell different from CART? She uses her laptop with advanced abbreviation software instead of a stenography machine. Kate said they summarize by leaving out false starts and filler words but they also try to capture everything like other people’s remarks and sounds such as car alarms that may be going off outside to show why everyone is looking out the window. It easier for the transcribers if only person at a time talks. CART might better suit someone who wants to hear/see everything such as person with a new CI who is learning to hear again.

How is it like CART? Captioning in all it’s sources is wonderful. Just like CART, it appears on the screen in front of you and it follows the conversation and I didn’t see any missing words (except when I stumbled over my words/sentences). There is a slight delay as with CART but not enough to make a big difference. It can be done on-site or remotely (off-site). Notes can be saved and used to study or review later.

Kate Ervin from TypeWell

Kate Ervin from TypeWell

How do people become a transcriber under TypeWell? TypeWell doesn’t provide services but they train people to do it.  Kate said each person has to be able to type 60 words a minute with no errors and they need strong English skills. They have to pass a specific test or they do not get the software to work with. (She also mentioned their software has a math mode for in the classroom.) Training cost is about $500 and about $100-200 dollars a year for the software. There are ongoing training opportunities and workshops to attend.

They will train anyone who can work with a university or an agency first to gain experience (either as an employee or contracted) and later transcribers can become independent contractors.  The typical charge for services is $15-$30 an hour, with the high end being $40-$60 and hour.

If you are hearing and this sounds good to you, think about applying because the hard of hearing population is growing and I think captioning will be more in demand. People with hearing loss are becoming less passive and want to be included. This job can be used in conjunction with another job, see the TypeWell blog for Jarren in Washington who provides services to both the Deaf and hard of hearing as an ASL interpreter and a TypeWell provider.

TypeWell is another option for real-time access to communication for those who are hard of hearing. Visit their website for more information and locate a local provider with this link: http://support.typewell.com/customer/portal/articles/229852.

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