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.
Yesterday a group I am part of, The Say What Club, had the topic of going to the movies. What seems like such a fun past time to many can seem like a waste of money to some, me included. Why, simply because why would I want to pay upwards of $10 to sit and watch a movie miss half or more of the dialog and sit and think why did I go to the movies. Which in turn makes it more than a year since I have done just that.
What we were talking about with the Say What Club was closed captioning at the movies. I think this would be wonderful. I love watching movies but it is done at home either Netflix or a rented movie and the captions are always on. I enjoy having the sound streamed to my hearing aids but I still need the captions to get what I miss. I need to fill in the blanks. My family is used to the words on the bottom of the screen. My son is behind in the reading game so maybe the captions will help some or he isn’t as behind as he could be.
The next obstacle is where to go for captions. I am in a small rural town but very lucky we have a theater in town. It is a one screen but upgraded to digital theatre. Our theater does have assistive listening devices but I tried once and it didn’t do anything different then my hearing aids in fact it wasn’t as much gain as I am used to. Great for someone with less of a hearing loss but I need the captions. Our next theater is 30 miles away and I contacted them and the person I talked to wasn’t sure they had them. Well that isn’t encouraging. I have heard there is captioning at one theater that is 1.5 hours away. Is that really accommodating the deaf and hard of hearing population that I need to drive 1.5 hours away to watch a movie. Just doesn’t seem fair. Maybe a price to pay of living in a rural area, or maybe an oversight that this needs to be offered.
After all this discussing on the topic of movies yesterday I went to a movie last night. It has been a long time since I have been to our local theater. My daughter wanted me to go with her to the new Hunger Games movie, Mockingjay Part 1. We went on our mom and daughter date and it was fun. I thought an action movie I don’t need to hear the words it will be nonstop action like the other two movies in the series. Not quite right with this movie. Lots of dialog and I missed over half of it I am sure. I didn’t fully enjoy the movie aspect of the night but I loved accompanying my beautiful daughter to a film she had been looking forward to seeing. It was fun watching her be tense and jump at certain parts and just soak in the movie. There will be a day in the not too distant future that she won’t want to do this with mom so I will grab the chance now. I look forward to the day we can rent the movie and we can watch it at home. She will love to watch it again and I will love to watch it and “hear” the words.
This has been the week of movie talk. With the Say What Club, with my daughter and with a huge understanding between the HLAA (Hearing Loss Association of America), Alexander Graham Bell, and Theater Owners of America that captions will be offered in all digital theaters starting in 2015. I was so excited when I read this, how exciting. Article from the LA Times. I wonder if this will take place in my neck of my woods. I wonder how long it will take. I wonder if there will be heels dug in and protest. I just wonder….
Take care all and as they sing in one of my favorite musicals, Annie….”LETS GO TO THE MOVIES, LETS GO TO THE SHOW….”
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.
- 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.
- 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.
- 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.
- 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.
- 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!
- 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.
- 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.
- 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.
- 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.
- 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.
This weekend was one of growth, acceptance, and most of all fun. Saturday morning our family woke up early and drove an hour and a half to a family event put on by Minnesota Hands and Voices www.mnhandsandvoices.org This was a first for our family, frankly I was nervous as could be. I didn’t think we would fit in. Henry has a mild hearing loss and we were invited to this event. I just thought it would be to mild of a loss and we really didn’t belong but there was a tug at our hearts to go. Chad and I were in agreement that we should go to this event as a family. The kids on the other hand were soo excited to get to the YMCA where this event was going to take place. Running around and going swimming is an OK day to most kids.
This day was eye opening to me. I had to wait over a day to write this post just to let it all sink in and settle. There were about 6 families there and the kids were all great and became instant friends. The hearing loss levels ranged from mild to profound. I guess we did belong. There was such a feeling of acceptance, I have trouble getting the feeling into words. Everyone there understood hearing loss. They understood that the fan kicking in is going to prevent you from getting the information presented. They all understood that you need to face each other to get the full meaning of the conversation. It was just a feeling that there were no differences, there was such ease of conversation all day long. I wasn’t the only parent to a child there that had hearing aids. There was just a sigh of relief if that makes sense.
We had a session on educational IEP’s which was very interesting. That always seems to be a sticky subject of what to put in the IEP and what should be in there and what the school wants to put in there is not always on the same page. We got a lot of good information and eager to pass it on to friends. The session that made the most impact on all of us was our second session, hearing simulations. There is no perfect simulation that will show exactly how someone hears but what is out there is still powerful. Each child present had their audiograms put into the program and we listened to a voice, like a teachers voice. Now add some classroom noise and listen to normal hearing and then how your child hears, Powerful. I know how I hear but hearing how your child hears still hits you. Sitting at a mild loss doesn’t mean it is a mild difference. You had to strain to hear the teachers voice and not just sit and passively listen you have to concentrate and concentrate hard. No wonder this poor kid comes home and meltdowns. He has to work so hard to just get through the day. I looked over at my husband who I don’t think really understood what it is like. He had his head down and I saw a tear in his eye. It was a powerful model that I wish teachers, family and peers could hear.
The kids had a wonderful day!! They played BINGO, basketball, minute to win it games. The kids even made the decision to all eat lunch together, really nice to see. We ended the day with some of them going swimming together. Just a great day with new friends and new insights. My daughter even wants to learn ASL now to try and converse with a couple of the kids that use sign on her own next time instead of the interpreter doing it all for her.
To hear what your child hears is a powerful moment and one I won’t forget.
Oh how I hate the afternoon and evenings on the day of Thursday. You might wonder but tomorrow is Friday? Why is this one day of the week such a thorn in my side. It is because of my son, or at least the what this night does to him. He get off the bus around 3:15 and there is a constant whiny sound you will hear till about 6:30. This whining will then lead to stomping then crying then sobbing till we can’t whine anymore. Yes it is annoying and I hate it but my heart breaks at the same time. Henry is in sensory overload by Thursday night. Have 4 days of school, 2 nights of TaeKwonDo, and a night of church have reached their limit. He has tried to hold all his feelings, emotions inside and by day 4 he is a bear. He explodes and we know to expect it now. He is passed out now and I hope he sleeps till morning and then tomorrow is a fresh day and Friday is always a fun day. He gets the rest his body and mind needs and we can get up and face another day.
Now I had a great Thursday. I needed to drive to the audiologist which is about a 40 minutes away. It was a follow up appt and to change some programing on my hearing aid. I knew it would be a short visit so make it worth the drive. I picked up a friend and we were off. We shopped without kids, talked, and stopped to eat a meal. I wish the world could listen to us at a perkins table. We could run the world with such ease. It isn’t complicated we have it all worked out, just listen to us. I am glad we had this time together we made it a great morning.
We all have our Thursdays. Times when we want to crawl into a ball and cry and shut out the world. The world has a lot of pressures and they can come in at all sides. My heart breaks that my son feels all those pressures and they all soak into him till he bursts. He is sleeping so calmly now. My prayer for him is a restful sleep that will take all the stresses and anxiety away, way too much for a 5 year old.
I hope you all have a restful Thursday night and you can all feel fresh and new for Friday.
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.
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.
The past couple week for me have been ones of thinking, planning and reflecting. I feel a strong tug to do something different in my life. If that is a different job, different volunteer opportunities and different experiences. It has to be little baby steps and living in a rural area nothing is close, I don’t have a plethora of opportunities. So I made up my resume. I think it has been almost 15 years since I have done a resume. It has been a good learning experience. I have applied for a few jobs and I have been turned down for a few jobs.
Last week I applied for a very unique experience. I have had a 45 minute phone interview (thank you for an amplified phone). If I would get this job I would be a literacy tutor for grades K-3 in our local school. What an awesome opportunity. To be a constant in a childs life and get them to that magical goal of reading. I hope I can be that person in a little persons life. I hope to hear this week if I will be going on to the next interview.
Another part of the dreaming comes with this tutor job. At the end of my year I would receive an education gift. It is a rather good amount of money to further my education. Wow does the dreaming begin. What would I do? What would I study? I don’t know I have ideas swirling in my head faster than snowflakes in a blizzard. I am thinking deaf and hard of hearing something with that. Maybe teacher for deaf and hard of hearing or a vocational or rehabilitation counselor. Just don’t know too many decisions.
Then today to start of the week with a blessing and a half. I subbed in Ag again today. I have to say it was much better today than the last time. Not one scissor got thrown across the room. I shouldn’t even have to say that. So back to the issue at hand…got home to a letter in the mailbox. I was gifted a hearing aid from the Sertoma club. I was beyond speechless and tears were flowing. I will be balanced (haha-one in both ears). This is a gift I can never repay and I am so humbled. I go to my audiologist on Thursday morning.
We just had our wedding anniversary and I just feel this will be a year of changes and I pray these changes will be good ones for our family.
Today was one of those days where you just fall into the couch in the evening and take a deep breath and just think of all that was done in a 24 hour period. My morning started at 5am when I had two great kids dropped off at my house to take to school in the morning. Helping a friend out who has helped me so many times. Then I had to drive to a neighboring town. Living in the middle of no where has advantages and disadvantages. One disadvantage would be a near 45 minute drive to any medical specialist, any major store, or restaurant. Well today was another audiologist appointment. I still could not hear anyone who was talking quietly or softly. I am not sure if I could when I could when I got the hearing aid or did my hearing slide a little more down. I am guessing the second of the two is what is happening. Well I had it upped two more levels and I think it will help. Technology is a beautiful thing seeing everything charted on a computer screen is really a cool thing. Maybe I am a nerd when it comes to that stuff but seeing where my hearing lies on the chart and what is being picked up and by how much is kinda cool. Left the office hearing a little more of the environment that I was missing. Wow you can hear jingling keys in your pocket.
Stopped by Target and you never know what you will see, or have the impulse to buy. I saw a friend from town shopping on her own also today so we shopped together and then out to breakfast. What a nice surprise. We talked that if we would have tried to plan this meeting and breakfast it would have never happened so nice to have a surprise like this. A great friend that we can talk freely about Autism, Sensory Processing Disorder, school challenges, and life challenges. So nice to know your not alone in the world. A few more stops than the drive back home.
You know I said I wasn’t really in the Christmas spirit well I figured we better put a Christmas tree up so that was our after school project. The kids were nuts to get that tree up. Well they think it is the most beautiful tree they have ever seen. ME- It is awful. It is a cheap small artificial tree that is so misshapen it should be in the trash can. Only half the lights worked so it is very pieced together and I guess a tree only a child could love.
It was a busy day but a day of some new hearing, breakfast with a friend, and an ugly tree that has children in awe.
So I am sitting in the silence of the morning hours. Sun hasn’t come up yet and words haven’t been spoken yet. I think about this upcoming couple days and what the agenda will be. Today we have Christmas program practice at church. That is always a fun time. Maybe a little chaotic. Little ones running around trying to round them up like they are the sheep and we are the sheep dogs. This afternoon I may try to get some of the house decorated for Christmas. Kids are driving me nuts that we have to get that tree up. True enough we need to do that. Tomorrow is Church, Sunday school and then Caroling in the community. Always a fun event. Traveling in a group from one place to the next trying to spread some of the Christmas spirit. We end the night with a soup supper always a highlight for our family. I sit here this morning by the computer awed by the changes we have had this year. I have a daughter that is excelling in school and over at the “big” school. She is just growing up out of that little girl. My son who I didn’t think would be able to handle school LOVES to go to school and Sunday afternoon is just a long waste of time to get to Monday. I look how our family is changed. I was in such a fog of disbelief lately with my sudden hearing loss that I failed to notice the good things that are going on with our family. So I have decided to try and make a list of the positives I have learned with having hearing aids and hearing loss.
1. I savor every I love you I get from my kids. I was upset I still can’t hear the whispered ones but I know what they are saying it still melts your heart.
2. I enjoy the absolute silence I have in the house before everyone is up and after everyone goes to bed.
3. Watching has become very important to me. Watching my kids interact. Sure a kick comes into play but the holding of hands or cuddling together to read a book became even more precious.
4. Empathy- I feel I have more empathy with the kids at school that struggle at the things that seem so simple to other children.
gotta have some funny ones
5. We have a faucet that drips at times. I can turn the hearing aid to mute and instant drip is gone.
6. Kids fighting in the bedroom. Again mute and fighting is gone for that moment.
I am glad that I took the time to write a list. It makes you put things in perspective. Sometimes taking part of one sense away does open your eyes to other things around you.
I find myself compelled to write about things that I wasn’t planning on writing about in this blog. But isn’t that life the unknown the ever changing. Has anyone ever had everything planned out and it really goes that way? Maybe some but was it interesting then? As I sit down to write this I can’t get over how quiet it is in the house. Everyone is in bed and my hearing aid is out for the night. It is total silence. There is no dripping faucets, no creaky floor boards, no furnace or fridge running. I see an occasional car drive by but no sound. How strange this is but at the same time amazing. How you go into life and then the unforeseen detour on the road takes you on another direction. So we are in for a major snow storm some saying upwards of 10 inches. Now the power just went out. I am not kidding you can’t make this stuff up. See the unforeseen always seems to happen. So when this new path comes up what are you to do? Learn to deal, make the best of it, find the positives, I guess I am still trying to figure that out. I know my drive to write has been heightened and I want to go with that. It is a wonderful outlet and maybe it will go somewhere someday. Listening to music has been an obsession of mine for the past few days. I don’t know why, I am a tv person. Love having the tv on as background noise and it is on all the time. I haven’t turned it on in 3 days. Kids think I am going nuts. I wonder why the music, am I somehow worried someday I won’t hear it? Not sure, it has to be turned way up but I am loving it lately. Life is an always changing organism. I am finding that out a lot in the past few years. With a move out to the Prairies of MN, with a son who receives an SPD and Autism Spectrum diagnosis and now hearing loss. Always changing and we have to be receptive maybe not willingly but life goes on and we want to go with it.