Tag: hard of hearing

A Mother’s Worry

My son and his ears… these two things bring me worry and concern. My son has a fluctuating conductive loss and it is frustrating beyond belief. Henry is 9 years old and this has been ongoing since he was 2. So 7 years of doctors, ENT’s and our audiologist. My son loves going to the audiologist and he does about 3 plus times a year. 

Let me go way back. Henry didn’t talk when he was a toddler. He also didn’t babble. He was quiet and reserved. I started getting concerned he didn’t talk and the doctor jingled his keys and Henry turned so I was told, “He can hear but maybe speech therapy would be good”. Henry started speech therapy at 2.5. I still wasn’t convinced he could hear well but was told not to worry. I had tons of ear issues as a child and it turned into a moderate severe hearing loss so I was no dummy on this subject. I also happen to have a B.S. in Communicative Disorders so I have taken many audiology classes so pretty well versed. Finally a public nurse in our small town said to me, “your son can’t hear”. She referred us to an educational audiologist and sure enough a conductive loss. Tubes were put in and his tongue was also clipped at that time. Glue ear was discovered and his ears were cleaned out. His hearing did improve but it is this roller coaster we are riding. 

A few years ago we noticed Henry was saying what all the time. Took him back in and the cycle continued. His hearing has dropped to a moderate loss. This time T tubes were recommended. These are a long term tube that are surgically removed when done. They don’t fall out and can cause a lot of damage so we really had to weigh the pros and the cons. This worked well for about 3 years. 

Fast forward to a few weeks ago. Henry’s hearing has now dropped to a moderate loss again with the T tubes in. This loss is comparable to having foam earplugs in your ears all day. This was concerning and I could tell the audiologist was much more concerned this time and something had to be done and quickly. We saw the ENT and it was decided surgery would be done the following week. Henry had the old T tubes removed his middle ear scrapped out and new T tubes inserted. It was a simple and quick surgery. He was put under so there is still that risk of surgery. As simple as it is I have to admit I cried when he was taken back. Everything went well,and now we wait and heal. We will find out in a couple weeks if his hearing has improved and how much.


It is really hard for me to see my son go through this. I know there are much bigger trials in life but to him these are big. He comes home from school exhausted. Have you heard of listening fatigue? It is real and it is tough. Trying to hear and make since of conversation all day is taxing on the brain. He comes home crabby many days and I get the brunt of his frustrations. He loves school but it is hard and exhausting. 

Now if Henry was found with a sensorineural hearing loss he would be given hearing aids and we could learn to deal and go on from there but instead I feel we are on this hamster wheel that just never seems to end. I pray that his hearing improved with these new T tubes but if not I would love to go to the next step and address the issue and go on. 

I am a mother with hearing loss. I feel I can help him with these issues but I also know what it is like. I hate that he may have some of these feelings I have had. I have felt embarrassed, left out, not fitting in. I sure hope I can help him through these things. 

School conferences were last week and we heard he needs to learn to self advocate for himself with his hearing. That is so hard to learn but will try to teach him every step of the way. 

A mom can worry and there are always things that can worry you. This is just one thing that consumes my mind, but I am also consumed with pride for both of my children. They are kind, creative and loving. They are my heart. 

Advertisement

Is that …?

Do your kids ever tell you something or announce something that you can’t help laugh till you need to catch your breathe. With my daughter we used to call them Gretaisms. I really wish I would had written down more of these. She was so stubborn if we told her the correct name or saying it didn’t matter. Do you remember the animated movie of a family of super heroes , The Incredibles. Yep to her it was, The Commadores. There was no changing her mind.  All kids have these and being a mom who happens to be hard of hearing I can hear some hum dingers of mis hearing.

I don’t know what all influences our kids. I hope our well meaning parenting does the most shaping of our kids. I am afraid that the world and outside forces does their share also. Like a play do mold. I try to teach values and morals to my children. Mold them into someone of good moral character. There is always that play do that squeezes out of the mold. I wonder if that part absorbs the world around us. Like it or not. It doesn’t mean they will go down a bad path but they have heard it and they are exposed to it.

Tonight my family went for Chinese food. First we had to convince our son that K2 was a regular shrimp and fries plate not kids. You know being 7 we shouldn’t have to eat from a kids menu. So yes I lied K2 is a big meal…NOT   When he takes the step to read the menu this will be stopped I guess. We were eating and enjoying each others company. My son yells in the middle of conversation while pointing to the sweet and sour sauce, “WHAT IS THAT STUFF? IS IT MARIJUANA?” Needless to say I chocked on my Mountain Dew and I don’t think I composed myself from laughing for several minutes. Where did that come from. I still can’t even type this at 3:30am without laughing. We don’t do drugs we don’t talk about drugs. I am guessing news or the few times my husband and I have debated over medical marijuana. We feel very different about that subject. That is besides the point. What does he think Marijuana is? To him a sweet pinkish dipping sauce. I didn’t know to respond but to laugh. My husband just said “Marijuana is illegal” I am not sure that cleared anything up for him. Kids say the darnedest things.

So next time you are out for Chinese be careful you don’t have to much fun with the sweet and sour sauce.

Christmas Cheer

image

Tree is up, presents are wrapped. Finished up my shopping today. We have our first family christmas celebration tomorrow. I know there are people that rock the ugly Christmas sweater. That just isn’t my thing. So I pimped or blinged out my hearing aids with some snowman nail foils. Now I will be wearing something Christmas like. I will have the Christmas cheer. Find something that give you a little cheer and a smile to your face.

I Need To Keep My Head Up

drowning picture

This past month I have felt like this a lot.  I have felt like I am drowning.  Yes I try to be the optimist, the glass is half full type of girl.  I just can’t keep that up all the time.  I can’t keep the smile on my face that everything is fine and everything is great.  I am the glue that tries to keep it all together in my family but lately I am having a hard time doing this.

I finally confided in my husband and told him that I am really having a hard time keeping it all together lately.  I feel like I am drowning and I am sick of keeping the smile on my face when I miss half a conversation and have no idea what someone said to me when they walk up to me at school or church.  I am sick of working so hard to understand all that is being said.  I am just sick and tired of life being hard.

Everyone has troubles in their lives and I try not to ever be a person that says well my troubles are worse than your troubles.  I hate when someone says, “At least it is not cancer.”  Yes I am glad of that also but guess what hearing loss, a son on the autism spectrum, anxiety, and so on isn’t that great either.  Everyone has trials in their lives, let them grieve and work through their trials.  Don’t discount it that a problem isn’t big enough, in their life it is a mountain.

My husbands employer has this new health insurance hoops you have to jump through.  We have to do an online health assessment and then talk to a health advisor.  I am fine with this until they talked to me about the stress and anxiety aspect.  1st off they knew of the hearing loss since that was one of the questions I had to answer.  They asked why I have stress.  I told them I walk into a building and I always feel off guard at first if I will understand people talking to me and understand what is being said there.  Their answer was deep breathing and I just need to believe and tell myself that everything is good and I can hear it all.  REALLY- I was hoping for some relaxation techniques.  I informed them I can’t make the hearing loss go away so in reality I am not going to hear it all.  They came back with I can tell myself I hear fine and that will take care of the stress.  Wow I didn’t know how to respond.  If this is what the insurance companies are going to tell us we can will all our troubles and our worlds troubles away.

I work at the school as a substitute teacher.  It seems to be getting harder and harder in some ways.  I like certain classrooms a lot, I like the high school.  I know I can hear decent in them and I know I won’t run into problems.  But the hallways, lunchroom, and the elementary school I just want to run away.  I feel like the air is being squeezed out of me.  I hate it and there is no way I can hear anything.  The elementary school is like a horror movie for me.  Little voices and always a sea of background noise I just cringe going in there.  This past week I was to work at the elementary school Monday and Tuesday.  I felt sick all weekend even thinking about these two days.  I don’t know what my negative feelings did but we ended up getting an early November snowstorm, we received over a foot of snow.  SNOW DAY on Monday and two hours late on Tuesday.  My prayers were answered!!! I hate that I dread going to work or certain places.  I hate that I have this sense of failure of events coming up.

I just need to get over these feelings.  I will, I am not worried about it.  I will learn some new coping techniques.  I am trying to learn speech reading which I really believe will be a huge asset to me.  I need to reach out to the friends that I know will be there when there is a bad day and understand.  I need to speak up, I need to say what I need instead of saying sorry like I was a problem.

It is going to be a long winter I am afraid.  This will be my winter to learn new things.  Maybe just maybe when spring comes again I will have some new skills and instead of this drowning feeling I am having I will be having a sense of renewal, just like my tulips coming up to see the sun.

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

How to ask

caution hearing loss

When to ask, how to ask, and who to ask.  These are all question that flood through my mind when I realize I am not getting what I need at an event or in a situation.  I will be an advocate for my children, and for a cause until the end of time but how do you become an advocate for yourself?  I had made a New Years Resolution that I was going to stand up for myself and make sure I can get what I need.  This post is my public display that I am not holding up my end of the bargain.  

I will tell people I am hard of hearing.  People may ask how much loss do you have, I will tell them I have a moderate severe loss and what that means.  I am open with that information but I don’t say what would make this conversation easier on me.  I have discovered that is incredibly hard in my book.  People hear the words hard of hearing they see hearing aids and they assume all is fixed and you can hear just fine.  WRONG so wrong, I need you to face me, I can’t have a noisy fan or other noise around.  I am not proficient in speech reading or in sign so I have to rely on the residual hearing I have.  

I have had a few instances that have come up recently that I should have spoken up to enjoy the experience to it’s fullest.  I didn’t speak up and ask anything and for that the fault all lies on me and my pride, or fear, or whatever is festering with this issue.  

Last night my daughter and I attended a movie at a little country church that is used for an outreach ministry in our area.  I attend a Bible Study at this church and it is a place of incredible peace for myself.  My daughter and I got to the church and got our popcorn and drink and settled in to watch the movie, Heaven is for Real.  Watching a movie in a candlelit century old church was magical.  It was a beautiful thing watching the movie on a sheet being held by clothespins strung across the front of the church.  What would have made the night better is if I could have heard the dialog.  I maybe heard 10% of the movie.  When I watch tv at home I either use closed captions or I stream the movie through an assistive listening device that goes right to my hearing aids, I love this option, I usually use both.  

surflink media

Did I ask for captions…NO.  Did I come early and ask to hook up the assistive listening device to the movie which would have taken two minutes…NO.  Why, I guess I just don’t want to draw attention to this issue.  I did bring my portable streamer unit.  I tried it but it mainly picked up the fans and I just got an amplified Charlie Brown teachers voice effect for the dialog of the movie.  I had a great time last night seeing friends and neighbors but I just had this kick in the butt feeling why didn’t you say something or stand up for yourself.  

I need help in this area.  I need a shot of confidence that I deserve to understand what is going on the same as everyone else in the vicinity of me.  I came home last night and my husband said to me, “Bet you couldn’t hear the movie tonight.”  No I couldn’t, he keeps telling me nobody cares if you ask, there may be three other people there that missed this line or that and maybe wouldn’t have minded captions.  

I need to learn how to do this at events like this or even a movie theatre.  It is just easier to watch a movie at home and not have to ask.  This is a huge learning curve I have found.  I don’t like to ask for something normally so this is just way out there for me.  I need to shove back my shoulders, hold my head high and get the idea drilled in my head that I deserve it.  

This I guess would be my New Years Resolution part 2 of just ask, stand up for yourself, you are worth it.  

stand up darling

Thank you for Reading

 

an arrow

I have watched my children get certificate after certificate to trophies and medals to the point we open a closet and we may get rained on by trophies.  I didn’t get any of this as a child.  One I don’t think awards were given out as much as they are now and also I wasn’t in the amount of stuff my kids are in.  I have my high school and college diplomas in a dresser drawer and I have numerous ribbons from county fairs but that is about it.

I started writing this blog last fall.  It was a stress relieving fun activity for me.  I have always enjoyed writing, and writing a book is on my bucket list.  As life threw me some new obstacles this past year I needed a way to work through them.  Writing was a good choice for me.  I was able to put those feelings to the key of the computer and I didn’t need to say them out loud. As time has passed I am not as ashamed or scared to share my story and tell others about the new direction my life may be going.  I also write for the SWC blog or Say What Club.  I have found so much acceptance, help, and friendship from these people that I can’t imagine I would feel how I do now with out them.

I wrote a blog piece about my life as a Substitute teacher that happens to be hard of hearing.  The blog post got recognized by a group in New York.  I am in small town Minnesota so this is wow a big thing.  I was interviewed and chosen to be a HearStrong Champion.  I am floored, shocked and honored.  Doesn’t the old saying go something like this, if life gives you lemons make lemonade.  Well I didn’t want to wallow in my life, I wanted and want to be proactive and move on and make life the best it can.

I want to take this opportunity to thank my friends and family.  They have been an amazing support system.  My friends here are awesome, they will listen to me as a rant and complain.  My weekly Bible Study has been a huge encourager.  I think all of these people gave me the courage to write what I was thinking, feeling and living.

Next month I get to travel to the cities to get my award.  Wow I just don’t know what to even think.  I am starting to get excited and it only fuels me to be an advocate, keep writing, and keep encouraging.

Here is a link to my HearStrong profile.

Life as a Substitute Teacher

Life as a substitute teacher is a life of the unknown. Do I work today or not? Always a question of where to work, what grade, and what kids.  I have been hard of hearing at this level for about 6 months or so. I am very new to this chapter of my life. A few people have told me, that I was proactive and didn’t stay in the land of denial and disbelief for any amount of time. I think the main reason I was proactive and ordered that first hearing aid was because I was sure I wouldn’t be able to work at the school, I wouldn’t be able to hear the kids all talking to me at once. I FEARED the loss of my job. I still have a problem with many kids talking at once, hearing aids are aids not miracles. I felt in my heart of hearts if I didn’t tackle this head on and immediately I would no longer have a job.

So what changes if any did I need to make as a substitute teacher and hard of hearing. One major thing I had to do was make sure I got those calls at 6:30 in the morning. We live in a small house and only have one phone jack so one phone in the house that is not in a bedroom, living room, or the basement. I have the school call my cell phone. I can usually remember to have that with me.   I also had to make sure my ringtone is nice and loud, but I also don’t want to annoy anyone else around me. The one thing I was given which I really like is this little device.

2014-04-23 11.57.44

This nice little battery operated stand will start brightly flashing when the phone has vibrated. This has been a great thing when I happen to be sleeping, and no hearing aids in.  I don’t hear the phone call but open my eyes to a light flashing. I can call the school back and not miss those jobs. Before I had this I was missing a lot of calls and I had to do something I was dreading. I had to let our secretary know that I am hard of hearing and I am missing your phone calls not just ignoring you. I got the kindest response, just a big thank you for all the subbing I do. I am not sure why I was so scared to let someone know.

I work in our local school district, which is small town and maybe 60-70 kids per grade level. A lot smaller then I was raised with. With having such a small amount of kids I know them. I have worked with them for 7 years; I have seen these kids grow. One thing I really like to use in the classroom is an FM system. I have seen these used before. Some teachers use them and some don’t. My son has an IEP and it states use of the FM system for his mild hearing loss. I try to use the FM system in every class I am in. For myself, and for students the use of the microphone is a nice way to make an effort that everyone can hear what is going on in the classroom.  I try to have no one including myself left behind.

There are classes that are much easier for me to teach in than others. Kindergarten through about 2nd grade really scares me. Why…they all talk to me at once in their little voices. I miss a huge amount of the content of what they are saying. I really try to implement one child at a time when I am in the class. An English class is usually an easy one, quiet and usually just reading. Now coming up I will be the agriculture teacher for three days. I know already this will be very stressful. It is a huge room with industrial fans, shop noise with industrial tech next door. I will sit facing the students and the door ( I don’t hear someone coming in the room), kids now to come up to me and face me to ask to leave class.

I guess my job is the same as all subs. I just have to make sure I am aware of what is going on. Make sure my eyes are on the kids and the kid’s eyes are on me. I would like to hear about what if any changes you have had to make in your career.

14 Years of Togetherness

14 years….wow that is a long time.  We are getting close to the amount of time that I will be with Chad longer than with my parents (almost 16 with dating).  14 years ago on the afternoon of April 8th I married Chad.  We had a nice simple afternoon wedding.  We had a small reception in the church hall and we were off to our hotel in the cities by 5pm.  I watch the TLC show, Four Weddings and I am shocked but the amount of money that is spent on a wedding.  Ours was simple and completely done by us.  Would the majority of people be able to accept a wedding like ours? Would they be able to deal with homemade centerpieces and beautiful flowers in mason jars? To me that day was magical.  I get remorseful at times and wish I would have had a big wedding with a dance and the whole shabang but you know what, I enjoyed our day.  I am not a center of attention person and our wedding had DIY, family, friends and fellowship.  It was our wedding and I will always cherish it.  

Now I am a bit of a superstitious person.  Ok more than a bit, if something bad happens at 10am on a Saturday for years from that day I still will get apprehensive at 10am on a Saturday because that could happen again.  We are almost done with our 13th year and for that I can breath a sigh of relief.  I hate the number 13 and year 13 had a fair share of things I would like to forget and move on from.  To start off our 13th year Greta, Henry, and myself were throwing up all night long.  My poor husband was stripping beds, washing floors and washing buckets on our anniversary.  That showed real love.  Chad got a serious leg infection that was down right scary.  Doctor visits, meds, and lots of prayer got him better but his leg is still not at 100%.  I became hard of hearing this year.  It is a new normal for me and I feel I am adjusting much better now than a few months ago but still a shock.  I crashed the only vehicle I LOVED and totaled it.  I had my first trip in an ambulance this year.  My beloved Grandmother died this year.  Just a lot of things I am glad are behind me.  With all that being said there was plenty of good also.  Henry started school and as much as he didn’t want to go to school he is doing great and loves it.  Greta is at the “big” school now and she is doing great.  Her empathy for people grows everyday and I love that about her.  We got to go on a family vacation this past year to Wisconsin Dells.  It was a few days of family fun that we made a lot of memories.  

What will this new year bring for us?  I am sure there will be changes that is what life is the ever changing.  The simple act of breathing and living will bring growth and change.  I hope this will be a year of good changes, maybe careers, kids activities, my faith growing stronger.  I want this to be a year of memories with my family and personal strides we can all make.  

14 years I love Chad and the family we have made.  It sure hasn’t been a path of roses but we have made a path through the vines of thorns and discovered the roses on the way.