This little boy is such a joy in my life. He brings laughs, cuddles, and stress. The past few weeks I have had my mind racing. I have been quiet on here and I believe it could be because my mind is on overdrive thinking … Continue reading My Boy
I mentioned in my last blog post that we were going to have an undercover mission with a friend of mine and her husband. They went to the theater knowing they did not offer captions but just wanted to see what the reaction would be when they asked about them. What happened next just shocked me. My friend did not talk just used sign language and her husband did the talking. They asked if captions were available and THEY DO HAVE CAPTIONS and provided my friend with a Captiview device. I was shocked and even more confused after all of this. I am very glad that my friend got to enjoy the movie and understand all of it. To make matters even more confusing it was the same manager that helped me helped her.
I called the theater again trying to get a hold of a manager. I had no luck doing this earlier. I actually got the manager and it was the one I talked to. He apologized that he didn’t give me captions. Then he went on to say that a “Full Deaf” woman came in today and I gave her captions. She couldn’t even talk so she was full deaf and needed them. It was thank you for your apology and now go stick your foot in your mouth. I told him I wrote a letter to the editor and he was aware of this, I guess the paper contacted the theater. I also told him I was waiting for a response from the theater and he told me he got my emails but just didn’t know what to do with them. That same night I received an email from a district manager asking some questions about the day, time and person we talked to. I responded right away to the email. A step forward I was contacted??
Next morning I get alerted that my letter to the editor was published. Had to run out on my lunch break and pick up the paper. Not everyday you are published in the paper, well maybe if you write for the paper. Here is a copy of what was written and published:
We are in a day in age where there is equal equality to all…but is there? I was at the Kandi Carmike Movie Theater this past weekend with my husband. We were going to a movie on his birthday. I happen to be hard of hearing and I asked if there were a captioning device I might use for the movie so I could understand the dialog. I was given the response from a manager that those devices take lots of paperwork, signatures and time so we don’t bother with them. This really upset my husband and I. Paperwork is such a pain that we can discriminate an entire group of people from the movies. A simple no would have worked but to go on that it is a pain and burdensome was unneeded. I guess my money doesn’t need to be spent at the Carmike theater anymore. November 21, 2014 the HLAA (Hearing Loss Association of America) had a landmark deal with Theater Owners of America that come 2015 closed captioning for the Deaf and Hard of Hearing and Visual Description for the Visually Impaired will be required of all theaters. I look forward to this day, and I look forward to the day when the pain of paperwork and time doesn’t discriminate a group of people. We wouldn’t think of having a theater not wheelchair accessible, not all disabilities are visible.
I have not heard anything from the theater until today. I was contacted by CCAC (Collaborative for Communication Access via Captioning). After corresponding with CCAC they sent an email to the district manager and copied me on the email and response. The email was sent and I thought AHHH now we wait. A whopping 5 minutes later we have a response from the district manager that they have captioning and are in the law complete with pictures of the Captiview devices and the headphones. CCAC sent another email back to them thanking them for their speedy response but alerting them as it is nice they have the devices they are denying them to certain patrons if they don’t look deaf enough. They asked the theater to issue an apology. This email hasn’t been answered.
So again we wait…..
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.
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.
I have two wonderful beautiful children that have alter egos. I believe their alter egos are tasmanian devils. Yes the house can be clean well as clean as you get it with two kids and a husband that can be a bit of a collector of everything. The kids get loose or as many people would say, Get home from school, and they run through the house and drop their jacket. Then to the kitchen where their bag gets dropped. Then I may find one shoe in the kitchen and one in the bathroom. WHAT??? REALLY??? Just kick them off at the door. Is this an everyday struggle in everyones home? Am I alone on this.
So today I have a meeting with Deaf and Hard of Hearing services. I am so grateful that they travel to our region and I don’t need to travel to them. That being said the tornado of carnage in my house has to be picked up for this meeting. I think I am in procrastination mode. I am sitting typing this so yes procrastination. I think everything is picked up just need to vacuum and sweep my floors. I thought it was so funny I told Greta last night to pick up her stuff last night so her stuff is put away today. Her reply was I have cleaned up my stuff in the past, YEP so do it again. I need to get this through everyones head this is an ongoing process not once or twice a year.
Well I wish you all well today. I better go do my floors and get ready for my meeting. Take care and I am sure the tasmanian devils will come home today again. Oh well gotta love them.
Today started out with a 2 hour late start for school that soon changed to closed. When you have a day planned and two hyper kids who are on the verge of killing each other it just crushes you. Yes I love my kids and I would hate for them to go outside in the blizzard we are having but when your day gets turned upside down it just changes your mood.
I had a meeting scheduled today with the State office of Deaf and Hard of Hearing. I was hoping to get some questions answered and find out where some of the resources are located in our part of the state. I read about all these classes and other things I would be interested in and they are 3 hours away from us. Not very practical. Would be nice to know what our region of the state has. When I found out school was cancelled it was NOOOO I don’t want to do this meeting with kids there. Meeting got cancelled hopefully will be rescheduled soon. A little relieved- didn’t want to do this with the children.
I was going to clean my floors this morning but instead I have blankets down on the floor and it is either a TaeKwonDo sparring match, or a WWW match, or cage fighting or some variation of this. The kids are determined to harm one another today. It must be the change in the weather. The wind is sounding like a freight train and it is doing odd things to the children’s brains. They are wild!!!!!
I made some soup for dinner and cleaned a few things up today but I am thinking I am done for today. I need to act as referee today and maybe a quiet movie later will be the magic pill.
The kids and I have been practicing our ASL. So now the kids are using the signs they know to insult each other. I tell you the day is one long fight fest. Henry’s big way to bug Greta now is to sign “Beautiful Henry” and then “Boring Greta” Greta then does some insults back to him and it goes and goes until one starts crying or tattles. At least they are learning ASL even if it is for taunting. That is good right?
Well good luck for anyone who is stuck in a blizzard. I hope my husband makes his 1 mile drive home ok tonight. I think we will all be staying home tonight. Now to go keep the peace and let my daughter know that she is “Beautiful Greta.” Maybe we should look up some uplifting signs today.
Have a good day everyone.