My Top Ten List

As I look at the calendar I start to get tense and look back at this past year and I marvel of all the changes that have been made. This upcoming weekend is the Tae Kwon Do tournament when I noticed the crowd was more hushed, I noticed I couldn’t hear a TV, or my kid’s voices.   I am not sure at this moment my hearing dropped or it was slowly dropping and it kind of hit me on this weekend. Either way it has been a learning curve with hearing aids, and accepting this new normal.

I look at this past year and I thought I 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 37 and I have a mixed loss that ranges from a 60-90db 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.

Top-Ten-list

  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 then 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 then 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 and the Say What Club. 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 fellow SWC 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 need 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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A Case of Mistaken Identity

lundquistclan:

I read this today and had to laugh. It is sooo true. I find myself doing most of these things on a daily basis. Yes I am a super spy!!

Originally posted on The Cookie Bite Chronicles:

Secret Agent or deafie

Illustration with apologies to Dick Bruna

It occurred to me last week, after a series of frustrating occurrences at work, that my rapidly evolving HOH behaviour patterns have the capacity to be misunderstood. Just in case anyone else out there is wondering whether their deaf colleague might be a secret agent, I have prepared a handy checklist of similarities in order to clear up any potential misunderstandings.

Always first in and last to leave

They might be on an intelligence gathering mission for MI5, or just catching up with all their extra prep and trying to get some head space because their brain is fried after a long day of listening.

Their eyes always seem to be following you

They might be waiting to inject you with a poison dart hidden in their umbrella, or just trying to read your lips.

They keep fiddling with their ear

They’re either wired…

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My Name In Print

Months ago it seems I was approached by this wonderful woman in our area to write an article for her magazine.  Kathy, a friend, started and runs a woman’s ministry called Best Life Ministry.  She is based out in Western Minnesota but will travel to put on weekend retreats which can change lives.

So we are back to this past summer.  I was asked to write an article about being a hard of hearing mother that is a woman of faith.  Ok that title fits me now to get the words to paper.  This was mid summer and as any mom knows summers with kids are nuts.  We have swimming, camps, playmates, vacations and company.  I knew this article would be shoved back to the back recesses of my brain and the deadline date would come and go.  I sat down that night and thought and prayed and typed.  I typed just the surface of what it is like.  I talked about when my hearing took a dive, how I felt and how I reacted.  I was used to a mild loss I had since what I believe was childhood but was confirmed by an audiologist in my late teens.  This was a whole different game.  I was lost and confused, I literally felt like I was drowning.  I wrote these feelings down and how they relate to me being a mom.  I feel it is all related, how can it not be.  It doesn’t have to be a bad or negative thing but it is me.

I didn’t forget about the magazine but when months past it isn’t in the immediate present and other life things fill these spaces.  Last week I was presented a copy of the magazine.  Oh My Gosh to see my name in print was breath taking.  I couldn’t believe it.  I felt numb I didn’t know what to think or do.  It was so cool.  I actually thought back to 5th grade.  I had written a short story and it was published in a book that was a collection of short stories and poems by other Minnesota young artists.  At that time I was invited to the St Paul Landmark Center and read my story.  It was an awesome experience.  Just like this was seeing my name in print on glossy paper that held my words and my thoughts.  I am so thankful for being able to share.

cover

I pray that my words may touch one person.  They may not be hard of hearing or deaf but have another life challenge they are dealing with at this time.  I pray they can see that there is support out there.  A challenge isn’t a bad thing.  It can propel you to do great things.  It is who you are.

I love to write, I admit I may not be great at it but I love it.  I tend to be a shy person but I am really trying to be more outgoing but writing I don’t feel the need to hold back.  My feelings, fears, and dreams can be written down and I can choose to share them or not.  They are my words.  I hope I will have some more chances to write in the future.  I love this blog so this won’t be going away.  I was asked last month to write an article or two for a nationwide newsletter that deals with hearing.  I responded a big YES to the editor so I will see what comes to be.  To write makes my soul feel free.  To get out was was harbored is a feeling of freedom that I don’t take for granted.  What I do here many people don’t have the right to do.  We are lucky, very lucky indeed.

Have a blessed day and find a place your name can be in print.  It may not be in the ink of a paper but the handshake of a neighbor you helped, or the nail you pounded on a project.  We can all make a difference and leave our mark somehow, somewhere.

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The Big Picture

speck pictures

Have you ever seen Horton Hears a Who?  It is a cute book, amusing childrens movie and a question that can keep you thinking for days on end.  Are we just a speck?  Are we just this small part of a big picture?  I have been thinking about this since last Wednesday at my Bible Study.  We talked about how we see the toil and strife that affects all of us.  Sometimes it just seems like we can’t get a break.  That is all of us, we are humans.  But when people say the phrase, this is all happening for a reason, is there a reason- a greater picture that this all works together?

I have a hard time getting my head around this at times.  I have had my share of troubles, sleepless nights.  Wondering how is this all going to work out or will it work out.  I think of the big things in my life now.  I think of jobs, money, my kids, IEP’s, hearing loss, a best friend with cancer, lice and the list could go on and on.  I wonder why there just can’t be a break.  Why people can’t just live the simple life, isn’t that the American Dream?  But then I see how some things that have been a roadblock, a problem can work out for the greater good of our family.  Moving to a town where I didn’t know a soul, heck I had never heard of the town before.  Now seven years later I no longer see this as a problem I see this as home.  I have more “family” than I had anywhere I had lived before.  I am more connected now with a church, school and other organizations.  There was a bigger picture and God knew this and he took care of us.  I can go through this whole list and after time has passed and the fog clears my head from the situation I see that there is a greater picture.  I maybe can’t see the whole thing but things do work out.  Things that we don’t understand can sometimes go into focus.

focus picture

So are we just a speck on this piece of paper of life?  All these things happen around us and to us and we have to trust that this big picture will all make sense.  Do I have the answers, NO.  But I trust in God and God knows ALL.  He knows how all these little things, the highs and the lows we will experience in life.  He knows how it will all work together and I have to try and get my simple human mind to accept that.  I don’t understand why there is hurt, why there are children that die, why mom’s get cancer.  I don’t understand, I don’t see the whole picture but I have to trust God does and he knows what is happening.

So listen for that voice, just like Horton heard from the Speck.  God is there for all of us and he cares about each one of us even if we are just this tiny speck in his universe.

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Plot Twist

plot twist

I like order, and I like things planned out whether it is on paper or in my head.  This summer was spent trying to figure out this next year of my life.  What would I do for a job, I longed for a change.  To make a difference in someones life not a sub that floats in and out each day different.  I tried for other jobs and nothing seemed to work out.  I finally took a job and I was excited for it.  The job ended last week after I quit.  I was not disclosed some pretty important information and for that reason I quit.  I felt upset, scared and betrayed.  I had this year planned out in my head and now it is all gone.  I took the week and thought pretty long and hard of what happened and I believe I can just say PLOT TWIST and move on.  Life didn’t go how it was all planned out in my head.  God is the only one that can know our future and he knew this turn was going to take place.

I went back to subbing last week and spent two days at the school.  It felt great catching up with the kids and hearing what they had done for their summer vacations.  It was nice to see staff and say our hello’s.  It wasn’t how I was expecting to spend those days but it was familiar and comfortable.  I still don’t want to be a sub forever.  I need more of a purpose a beginning and end of what I am doing to know that I made a difference on someones life.

Chad, my husband, said to me this weekend “Sara you are pushing 40 it is about time to figure out what you want to do with your life.”  That is so true.  I went to school, then graduated college, obtained a full time job.  Never something I loved but it was an income my desires were to be a wife and a mother.  I was successful on that front and that is what matters most in my life.  I feel this pull now, I am in my research phase now of different career choices.  I get a little nuts when I find a topic I enjoy.  I will stay up till the wee hours of the morning, reading, and making notes.  I am starting to put some feelers out will be doing some work on some different ideas in the next couple weeks.  Maybe it is not in the stars for this path to open up but we will just have to see what happens in my life.

Remember when something happens that you weren’t expecting just yell Plot Twist and move on.  I have done that with moving, having a child diagnosed on the Autism Spectrum, hearing loss, and jobs.  Life takes twists and turns you never expect.  Yell Plot Twist or you will dwell in these turns that you will never see the beautiful clearings that you are about to come to: Living in the beautiful prairie, having a son that has taught me to look at the world a little different, meeting friends and learning so much in this past year, being back at the school that is familiar and I am needed.

Life just isn’t a straight line it is like a river that meanders and the slow curves that the water has carved in the banks.

meandering-river

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Does Blinging mean Acceptance

Bling: (Bling or bling-bling) is a slang term popularized in hip hop culture, referring to flashy, ostentatious or elaborate jewelry and ornamented accessories

2014-08-19 03.24.10 We are getting close to the year point that my hearing started dropping and hearing aids were purchased and worn. I grew up in a family that has a history of hearing loss this isn’t a new thing for me. I can remember sitting in the audiologist office in 7th grade and being told I should quit the swim team for fear of further damage on my ears. I can remember running from the doctor’s office crying and not wanting to talk about this information. Small tidbits of the given information from that doctor appointment never fully left my head but was pushed to the back recesses of my brain.

In college I majored in communicative disorders and took a lot of audiology classes. That tidbit would creep up to the surface every once in a while and I would think would this be me someday? Will I be getting fitted for hearing aids in my lifetime? Will I be honest about my hearing loss or try to hide it? Anxiety would creep in when us students would have to give each other a hearing exam. I know I wasn’t hearing the beeps. I never was in the normal zone. Many questions and then college came and went and it would get shoved to the back of my brain once again.

Little things would trigger this thought, walking behind someone and noticing hearing aids I would wonder will people notice me if I am wearing them? I knew my hearing wasn’t great. I had never heard my kids whisper to me or talk from another room everything I was used to from a young age. I don’t ever remember hearing a whisper to tell the truth.

So nearing a year of my hearing aids. When I picked up my first hearing aid I cried. I didn’t think it was going to be that hard. I had people who were sympathetic and then I had people who said I should move to the nursing home, do I get a senior discount now. I was ashamed and I didn’t want ANYONE to know. I wore my hair down and I didn’t want to let anyone in on this secret except family and a few friends and to be honest I had a very hard time with them also.

I researched and I gained friends that were also in the same “boat” as I was. I started to breathe again and was able to see this not as an end of the road but just a different road. I started writing and being a little more vocal about what was going on in my life. This past summer I received a gift of hearing aids that are much more powerful than the one I purchased and they seem to serve me well.

I come back to the definition of BLING. I have these great Starkey hearing aids and they are in a dark brown aka espresso color. I don’t mind them but they needed something more, some pizzazz. I sat down at the table a week ago with some paints and thought I would design them. That just seemed so permanent to me. So I went to my addiction of Pinterest and searched blinging hearing aids. I got the idea of using nail foils on the hearing aids. I bought a pack for $2 and I have enough to bling out the aids probably 4 times. I tried my first time with a butterfly design. I also bought a pack that looks a little like tie-dye. I like the fact that I can take it right off with no residue and start over with a new design. I love the look of them, I love that I am wearing something a little fun just like the bright blue glasses I picked out a couple years ago. In a year I went from scared and hiding to pulling my hair up and showing off butterfly hearing aids. What I loved the most is when I showed my husband he looked at them and said, “Hey those are really cute, great job”. My daughter gushed over them and can’t wait to help me redesign the next time. Am a complete open book, not even close. A few pages maybe have been exposed to some people for now. But for now I will wear my hair anyway I please, not care if people notice hearing aids or ear molds. I will design them and wear them and show them off.  I also have a remote and streaming device that just looks so plain and a solid color. Maybe that needs a little blinging out also.

2014-08-22 13.16.44

So maybe blinging means some acceptance. Showing something off instead of hiding it. Blinging lets the world see that you are in acceptance and even inviting a question or comment. If someone wants to ask me about them, that is just fine.

just be yourself

 

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My COOL KID

My daughter, Greta, I have bragged up in the past.  She is an amazing girl and I love her with all my heart.  Does she have tween attitude and eyes that roll…you bet, but she is a wonderful daughter and so proud of her.  This past county fair Greta won two grand champion ribbons for a couple projects that deal with hearing loss.  She was interviewed this past week and this is article that was written.  I am so proud of this COOL KID.  

Meet the Cool Kids

Education Takes Grand Prize: Greta Lundquist

By Rachel Janis, staff writer

Eleven-year-old Greta Lundquist stands before two large trifold poster boards, fashioning a welcoming smile as onlookers peruse the Swift County Fair in Minnesota. Her poster boards—one entitled “Being Hard of Hearing,” and the other, “My Visit with Tani Austen, Starkey Hearing Foundation”—capture curious eyes, and Greta confidently answers questions and explains why she is there.

The soon-to-be sixth grader actually has normal hearing, but because her mom was scheduled to be fitted for hearing aids at the Starkey Hearing Foundation’s office, Greta accompanied her and received the opportunity of a lifetime.

And as she proudly showcases her two poster boards at the fair, she can’t help but to think about that special day—sitting one-on-one Tani Austen, co-founder of Starkey Hearing Foundation, for an interview.

Greta’s mom has moderate to severe hearing loss, while her six-year-old brother has mild hearing loss. While interviewing Tani Austen, Greta heard a very familiar story. It happened that Tani, too, became aware and interested in hearing loss at a young age, when Tani’s mom first received hearing aids. Tani, along with William F. Austen and a group of dedicated workers, eventually went on to fit more than 100,000 hearing aids to people in need each year through the Starkey Hearing Foundation. The Starkey team helps people all over the globe, such as in Kenya, Honduras, and Israel. And that day, Greta got to interview Tani and learn all about the projects and missions the foundation has completed. One thing Greta learned was that “anyone can work on a hearing mission,” whether you’re hard of hearing, deaf, or hearing.

Greta took this to heart and decided that she wanted to educate the Swift County fair-goers about the deaf and hard of hearing community—not only to honor her mother and brother, but to bring awareness to the general hearing population. “It is not just people in nursing homes who are hard of hearing,” Greta reminds us.

Greta’s informational poster boards won her two blue ribbons and two Grand Champion ribbons at the fair.

It felt great teaching her audience a little bit about what it’s like to live with someone who’s hard of hearing. She has to make sure she’s facing her mom when talking to her, and if they’re in a noisy shopping mall or a busy café, Greta just has to wait until they get to a quieter spot. Their home is also a little bit different than the average household, fit with a few more pieces of technology, like a captioned phone and TV, assisted listening devices, and a plentiful amount of hearing aid batteries just in case.

“Try wearing earplugs for a day and you might get a little bit of an understanding of how hard it is,” Greta advises. “It is frustrating [for me] at times, but… just because my mom may say, ‘Not now,’ or, ‘I can’t hear you right now,’ doesn’t mean she doesn’t want to talk to me. We just need to find a better place.”

Hearing loss doesn’t hold this family back. It may be seen as a struggle or a conflict sometimes, but hearing loss is something that can easily be managed and even embraced. Greta hopes to participate in a hearing mission someday alongside Tani Austen and the Starkey Hearing Foundation. As she clutches her Grand Champion ribbons with pride, she knows that she can make a difference, giving a voice to those who aren’t able to hear.

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How Do You Define deaf?

lundquistclan:

A very interesting read…makes you think of all the labels out there. What to use and when and why to use them.

Originally posted on SayWhatClub:

I just came across this post last week that asks about the definition of deaf. You can find more replies here http://alt.newsgroups.archived.at/support.hearing-loss/201105/11051917641.html

 “Greetings – I just had to complete an on-line training course in “Diversity”. There was a question that asked what preparations should be made for an interview with a person known to be deaf. The answer included having a hearing loop ready. My response was that a hearing loop would/could assist someone like me with a hearing impairment, with suitable aids, but not someone who was deaf, because my understanding of the word deaf is that it means total hearing loss – the same as “blind” means total loss of sight as opposed to a visual impairment. I’d be interested to see responses about how others describe themselves – i.e. deaf or hearing impaired.”

I don’t mean to pick on this person. If anything, I see both the…

View original 493 more words

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County Fair

Every year as the thermometer creeps up and the nights get a little shorter we have a wonderful event that our family fully loves….The County Fair.  We are not a family of livestock or crops but we love the fair for the neighbors we will see, the hard work of our community members and our favorites the 4H and open class buildings.  

Both kids are in 4H and this is a big deal getting all the projects put together and then going to the fair and judge them.  Greta brought 8 projects to the fair.  She came home with 8 blue ribbons, 2 grand champion ribbons and a honorable mention.  I think that is pretty good for an 11 year old.  Henry is in Cloverbuds and he brought with 4 projects and came home with 4 ribbons.  

Chad and I entered open class which is always a fun thing to do and so different from year to year.  Chad entered a welded candle holder and got a second place ribbon.  I entered a variety of items and got a variety of ribbons from first to 3rd.  Here is our 2014 fair experience in pictures….

Henry’s judging and his ribbons

2014-08-13 14.02.20 2014-08-13 14.04.08

Greta’s judging and ribbons

2014-08-13 14.08.47 2014-08-13 14.32.03 2014-08-13 14.21.43 2014-08-13 14.03.46 2014-08-15 18.07.52 2014-08-15 18.05.32 2014-08-15 18.09.10

 

A sampling of my ribbons

2014-08-15 19.50.38 2014-08-15 19.51.23 2014-08-15 19.52.28 2014-08-15 19.49.53

A great time was had at the fair and not even two full days after the fair has been done we are already asking ourselves the question…WHAT SHOULD WE MAKE FOR NEXT YEAR?

2014-08-15 18.13.39 2014-08-15 18.13.26 2014-08-15 19.04.01 2014-08-15 20.14.56

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A Job

Never Give Up

Today I have a feeling in my soul that hasn’t been there for a long time, contentment.  I have struggled with a hole in my soul that I wanted to fill with work.  I want to work and help support our family.  

I have worked since I was a little girl.  I had a daily paper route that was a 5 day a week afternoon paper.  That was my first work experience and it taught me hard work, determination and discipline.  I babysat a ton then moved to waitressing all through high school.  In college I always took a full class load but always worked at least 30 hours a week also.  Work was important to me, it always has been.  

When I moved from the Twin Cities to the small town in Rural Minnesota I left my full time job of 10 years.  This was hard but also a good time to reconnect to my husband, my small daughter and we then had our son.  I have done little jobs here in town.  I worked at a local floral shop, a cashier at the grocery store and my main job as a substitute teacher.  Both kids are in school all day I need more, my soul needed more, my family could use more.  I have tried so hard this past year to find another job.  A job that I could count on hours and also feel I can make some sort of difference not just keep the peace in a classroom for a day.  I interviewed for a few jobs in town…NO.  I applied and interviewed for so many jobs at school….NO.  I needed to change the direction I was going.  What to do, I know I have certain limitations with my hearing.  Answering phones all day would not be a good fit for me.  Numerous people talking all around me also not a good fit.  

This weekend is my first hours working as a PCA, personal care attendant.  I am excited, happy and at peace.  I am earning money, I am helping a fellow human being, my needs are being met by being a productive citizen.  I believe this will be a good fit.  I know where I will be working and when I will be working.  I love the stability, I love knowing a paycheck will be coming.  I won’t be rich but my soul is feeling alive.  

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