It is the busy time of summer again called, county fair. Both kids are active in a 4H group and projects had to be made and deadlines were looming. Fair time reminds me a tad of Christmas time. So much to get done and finished … Continue reading Fair Time
We have all had people tell us, “all you need to do is ask.” I find that an incredibly hard task. I don’t know why I don’t want to bother people or to be a bother. When I was a young girl I was in … Continue reading Just Ask and You May Receive
Christmas has come and gone. We have traveled across the state for six days and now returned home. During my time to the Twin Cities I made an appt for a hearing aid repair at Starkey Hearing Labs. I love my Starkey aids but living … Continue reading When a Hearing Aid Repair Feels Like A Celebrity Sighting
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.