Effective communication strategies

My life at work today consists of two distinct groups of time… CI time and no CI time, both sets of time include my HA being on. Why might you ask, do you take your CI off at work? You work with all hearing people, a hearing coworker, hearing clients… why is your CI coming off when you need to listen the most? Trust me, I have a very good answer to this…

this lovely piece of machinery is joyfully tearing up the asphalt behind my office. Now with my Hearing aid I occasionally, if I stand right by the door to the back, hear a very quiet rumble, although I can feel it much more than I can hear it. (there is no measurable hearing in that ear). But with the CI, no matter where I am in the shop, it is LOUD… it interferes with my hearing, with my comprehension… and becomes all I can hear… not only that… but with the 100+ db noise it and its 3 Jackhammer friends are putting out… I get a headache. This has lead me to think about my work situation a bit… my new co-worker has never known me as Deaf Ash without a CI, he knows to look at me, but he also knows I can understand some of what is said… he knows he can get my attention just by saying something, he knows I can hear the phone ring… and with the help of my occasionally correct captioned phone, I can also answer it. The inconsistency of today is proving to be difficult for both him and I.

I am finding myself having my CI off every 20 minutes or so… as soon as I hear the sound, or begin to feel the vibrations that mean the sound is inevitable, the CI comes off my head, and I enter a beautiful world of complete silence… with more communication difficulties than has become my norm.

With that, I’ve started to think about how communication can be eased between us right now, and what, in reality, should be good practice all the time so we can ensure good communication. These tips may be helpful for someone else, which is why I have decided to codify (write them down).  I am thinking of calling them something catchy… but the only thing that is coming to mind is that Deaf Girl’s Law… which is in no way catchy.

Effective Communication Strategies:

1. Make sure you have the person’s attention before you begin to speak.

  • To do this, tap the person on the shoulder lightly
  • If you are trying to get everyone’s attention, you may flash the lights
  • NEVER throw something at the person to get their attention

from Matt Daigles that Deaf Guy

2. Speak in a normal tone of voice, at a normal speed.

  • do not think that just because your voice is raised, the d/Deaf/HoH person can understand what you are saying better, normally it is harder.
  • Do not think that if you talk slowly we will understand better… by doing that you are changing how your lips move, and making it harder to understand.

3. When you are talking, be sure to keep looking at the dhh person without fidgeting or covering your mouth.

  • This will make it easier for them to continue to understand, when you look away our source of information disappears.
  • When you fidget, it is distracting, think of trying to read a book while someone giggles it, wiggles it and twists…
  • Covering your mouth does just the same as turning away… If I can’t see your lips when you are talking, I will have no idea what you are saying.

4. Stand with approximately 4 feet in between the two of you

  • Standing too close or too far away can make comprehension difficult

5. Do not get frustrated when the word “What” creeps in, it is bound to happen…

  • This word is going to come up, Maybe we misunderstood, maybe the words looked like gobbydygook… maybe we blinked and missed something, but the word is bound to come up. Keep calm, proceed to step 6 and 7.

6. When asked what, do not simply say the same thing again, restate it, choose different words, because maybe then we will understand.

  • Certain words look the same, certain words are just difficult to understand. Being given the same word over and over doesn’t necessarily enhance our comprehension, but it is the definition of insanity. Giving us a second word, with the same or similar meaning can aid us in grasping what is said.

7. Write things down that are complicated, or if we don’t understand

  • Contrary to popular belief, not all deaf people are stupid… we can write, we are not all illiterate. Just like in hearing worlds, in different states, countries, some of us may not be able to write or read… but this is not due to our deafness, this is more likely due to inadequate teaching as children, or inadequate access to language. Do not assume all deaf people can’t write, just as I won’t assume all hearing people can’t (even though my experiences have been hearing people less likely to try and write than a deaf person)

8. Be patient

  • Lip-reading is hard, it takes time, we can’t grasp everything that is said. Be patient with us, frustration is going to happen on both ends of the conversation, but getting frustrated will not help us meet our communication goals.

9. Understand lip-reading is exhausting and takes a lot out of us, the more tired we become, the less we will understand.

  • Try to limit the communication time. Break it up into blocks of time if necessary. The longer we lip read, the more mistakes we will make.
  • Giving breaks can allow us to think about what was said, and make notes if we need to.

10. Speak clearly.

  • Mumbling is one of our worst nightmares.

lipreading Nightmares. From Matt Daigle

11. Understand accents are harder, it takes more time for us to get use to the way you speak, so our comprehension will be lower to start with.

  • Be patient and if needed, use a pen and paper or a computer to communicate. This will ease frustration for both of us.

12. Lip-reading is not an exact science.

  • Only 30%-40% of the English language is able to be understood from the lips themselves, a really good lip reader, knowing the conversation topics can do better than that, but lip reading is not a science, and too many things can interfere with comprehension.

13. If the person uses a HA or CI, be cautious of background noise.

  • Background noise overpowers everything else. We don’t have the ability to “tune” out specific noises like a fan, or the conversation of others (or… a jackhammer). Our comprehension can go up if we have a quiet environment.

14. Do not assume that if we don’t understand we are less intelligent.

15. NEVER use the words “never mind”

  • This will be explained more in depth in the next blog… but the phrase never mind… it huts.

 

 

So those are some of my tips… any you care to suggest? Although my personal favorite wasn’t mentioned, because this was more about my life at work… but still, if the deaf person signs, learn sign language!!!!

Why the focus on speech?

When you talk to a new parent… they are looking forward to the many firsts the child has. Their first night sleeping all night, the first steps,  the first smile that isn’t because of gas, the first time they laugh,  and their first words… when hearing parents find out their children are deaf, they mourn the “loss” of the “normal” child they would have had… instead of celebrating the child they do have. Why?

 

Partially, I think it is because they had all these expectations for their child. When asked what they want most, many soon to be parents say a healthy child… why is deafness not seen as still being healthy? This is the medical communities fault, the audist perspectives many people have, even without realizing it.

 

Watch the words that are used… common words… but think about their connotations, the meanings behind them, and what they tell parents.

When a child is diagnosed as having a hearing loss, it is a scary time for parents. They are told their child will need speech therapy, there child has been diagnosed with something. Parents are told “I’m sorry” as if their new born child has something wrong with them. Those words, especially at a doctors office, are generally used for very bad, life threatening diseases.

 

These words have negative impacts on the child as well as the parent… the parents sense of joy at seeing their child for the first time is overwhelmed by this scary thing the doctors have said. Their child may never talk, they will never hear music, they will be left out. There is too much focus on what the child can’t do, rather than what they CAN do.

 

The following video can explain it better than I can…

 

There is so much negativity in our world, new parents shouldn’t have to feel this. They should be allowed to be happy they have just brought, or adopted, a new child into this world, into their family. The child may be deaf, or hard of hearing, but that doesn’t mean the child shouldn’t have EVERY opportunity to succeed… and with this, sign language, despite other options, such as hearing aids or Cochlear Implants is ESSENTIAL for the growth of a deaf child. Speaking when you can’t hear the words properly is frustrating… and yet, so many parents choose the oral only rout for their child? Why? The medical community is telling them this is the best option, if they want their child to be “normal”.  There are many other examples… but speech is just a modality of language, and too much time is spent focusing on speech when language development is not truly equivalent to speech development.

This video explains some of it…

 

Don’t get me wrong, am I happy I can speak, yes. It has helped me, especially when I didn’t know ASL, I could get my feelings out in some ways… but writing has always been easier for me. Why? Because I could see the language, I didn’t have to think about it as much, I didn’t have to think about how the words were pronounced, but I could just let it all out. Writing has always been my way into the world around me, I would write poetry, music, letters, sometimes I would just rip them up… but I could still get it out. But spoken language ISN’T a language, it is a modality of a language.

 

Children younger than 10, 5, 3, even 1 are being put into speech therapy, into AVT (Auditory Verbal Therapy) not to improve their LANGUAGE, but their SPEECH. There are “toys” out there to help a child learn where they went wrong in speaking, but this doesn’t equal having language.

why is this the image so many people want to see

rather than…

 

or this?

why is this what we focus on

rather than this?

because parents want their child to be normal… and to be normal, is the same thing as being hearing… and that is just a sad, sad thought. That this is considered more normal

than

Is it so important to hear your child speak rather than see their thoughts? Is it so important to hear your child tell you I love you mommy/daddy, rather than see them sign it? I think we should focus on language before it is too late, rather than words.

Wibbly-Wobbly Timey-Wimey

Its funny how weird time goes… how weird time progresses, how sometimes time speeds by, and how other times, it feels like it I’ve been thrust forward in time. There are also times where my life feels… Hazzey, foggy, like I know that I am the active participant in my life, but like I am looking at everything, milliseconds after it happens, and through a dense fog.

I honestly expected Friday to be the hazey day… with seeing my surgeon, getting told my final yes (and yes… it was a final yes! Just waiting on insurance now!)… but that day, Friday, is crystal clear, the little details of my life, they are clear as a bell. I remember waking up… being so scared I was going to be late, not being sure of how traffic was… and then going over in my mind the days schedule. I remember getting in my car… the  feel of the vibration under me… and feeling lucky that traffic wasn’t bad, but then finding the hardest time to a parking spot. realizing the elevator was broken, but knowing I would be fine with the bridge on my way back. Going into the office, signing in… and not being able to understand a word of what the woman at the front desk was telling me… this is when the slight panic set in… what if I wouldn’t be able to understand the doctor… what if I made a fool out of myself, what if I didn’t understand things, so my surgery was off… then I remembered… they were suppose to have an interpreter show up for me… the panic settled a bit, I apologized to the woman and told her that as soon as my interpreter showed up, I would be able to answer her questions, but because she has braces I wasn’t able to understand a word lipreading, that I was just going to sit down until my interpreter showed up. She kept talking, and my mind was thinking of the worst possible scenarios… oh the interpreter wasn’t going to show up things like that, which for someone who is Deaf and uses ASL as their main form of communication, and for something as huge and as potentially scary as this… it was horribly frightening. I sat down, a woman walked in the door and was pointed towards me, she started signing… this is when the panic completely subsided… I realized I would be fine, I had my great comfort, my great understanding, my language with me, and that is all I needed! As it turned out the woman was trying to ask me about pharmacies, and was telling me my interpreter was here, just in the bathroom… I got absolutely NONE of that… if I had to put words or sounds to what I got, what  I understood, it would be… “ajdsflkzjfka dhglkafdg”

So then I filled out the paper work the impossible lady to lipread handed me, and we waited… and waited and waited. Finally, almost 30 minutes after my appointment time, I was asked to come back. They told me that normally… they would redo the testing that had been done the last time I was there… but because of my wonderful responses (or lack there of) they saw no reason to torture me any further with that… but they did need to do a tympanogram, which feels kinda odd… but I’m use to them. They push air into your ear, and measure your ear drum responses.  Ideally… it should look something like the middle one (and that is what my ear ALWAYS looks like, unless i am very sick)…

so after that, they sent me back out into the waiting room… to… well as the room imply… wait… and wait.. and wait some more. Finally it was my turn to go into the office with my surgeon… and to my horror… there was a chair in the room that made me want to run away and cry… it looked like I was in a dentists office (and for those of you who don’t know… my biggest fear… more than spiders, more than ANYTHING [except loosing my family] is DENTISTS)… I almost started hyperventilation…  but I calmed down… as soon as my interpreter started signing… and I remembered… this doctor, he is not a dentist… he is not someone who likes to cause large amounts of pain to someone while they are still awake… he is not going to drill into my teeth at all (just my head). After a long conversation about how wonderful my CT scan looked, and the request at me getting blood work done to figure out if there is more of a reason my hearing jumped off a cliff in the last year… he said yes. He told me to get on the schedule, then found out I am already on the schedule, and was thrilled, because now… now my surgery will be in July… activation will be in July, instead of surgery being mid August (where they are at now), and activation being September, and me having to miss school… so forth. So I have added more to my list of things I need to do… including, getting a pneumonia shot… that somehow will prevent against meningitis…  and getting the blood work he requested (both of these are going to be done this Weds).

I also got new impressions for my ear molds taken on friday… or shall I say ear mold (because my right ear is going to have a CI, and not a HA soon), which hopefully I can pick up weds as well… not too sure on the time frame there.

But like I was saying… I remember almost every detail about Friday… but then it is Saturday that turns into a Haze for me… I still remember it… I still worked… I still did everything I was suppose to… it was just… hazey… I felt like I was living in a fog… the day flew by… then slowed to a crawl… and repeated and repeated, and repeated.

Sunday, we went to Denver Pride! It was fun, it was hot… oh… and I forgot about this magical thing called sun screen…  so I got burned. We walked around… I got told that I look like a singer… informed them I was deaf, then found out one of the people in the group, she is a CODA, actually… a first generation hearie, so we chatted for a while, and it was absolutely wonderful to be able to sign with someone… but when I came home… I was whiped from the day. It felt like we had been there for hours upon hours… when really, it turns out, we were only at pride for a little over 3 hours… not the 6 it felt like.

Time… I know I’m going in circles… it feels like I have been stairing into this…

if you know what this is… you get a virtual cookie!!

and that time is all wibbly-wobbly… timey-wimey… nothing is liner, but that… space and time is folding into wacky shapes, so that I never know what is happening next… Hopefully I will get MY computer back soon, and things will be better… and I can actually update after something happens, rather than having to wait a while… though Friday’s memories are still fresh in my head… with time being silly… I don’t know how long they would have stayed like that.

How I came to my decision

So I have been asked, why, if you are happy being deaf and happy being Deaf, why in the world have you decided to get a cochlear implant? The question is simple, the answer not so much.

I have never had normal hearing, so I’m not sure what it means to hear normally, but I have always heard some things, at least with my hearing aids. I could hear music (not the complexities people describe, but I could hear it, and i could enjoy it. I could hear dogs barking, children crying, the joyful sound of laughter children make when they just can’t contain themselves, my partner telling me she loves me. my mom singing me to sleep… but now all of that is gone.

this is what I want to get back. I want to be able to hear music, and enjoy it. I love the feel of music, but I can’t distinguish what song is what, if it is a good song, or a bad song, if it is sung by someone good, only… only that there is a lot of base, or not enough.

I can see (and I am so thankful that I can) when my partner signs I love you, and I can see it in her eyes, feel it in her touch, but sometimes, I miss hearing it in her voice. I also miss the ups and down that go along with hearing peoples words, even if you can’t understand those words. being able to hear inflection, is a huge part of coming to understand what someone is saying, the message behind the meaning. I can read body language, but that doesn’t always tell you everything you want to know, that doesn’t always tell you the depth of their words (not to mention, lipreading, something I have to do almost all day is so exhausting).

My mom, she is trying, she is trying so hard to be able to communicate with me on my level, in my language (and ASL will forever be MY language), but it is coming along slow. When I call her I use either VCO (Voice Carry Over Service) or captions. Both have their ups, both have their downs. With VCO, the information comes much faster and much clearer, but captions work when I have a cruddy internet connection, and I can save the conversation. But there are times when I get horrible interpreters, or horrible captioners, and the message doesn’t come clear. There are some interpreters who do a wonderful job with showing the tone of someones voice, then there are others… who although they get the signs and the grammar right, show no emotion while doing so, leaving out a crucial part of the message, leaving me to guess. With captioning, there is NO way to understand a persons tone, no way to know if they are angry, or sad, or excited, only the words. When I get my CI, I know I will still use these services, and be so happy (still) that I have them… but then, I will, maybe, just maybe, be able to hear the inflection, hear the hidden message behind their words, even if I am never able to understand the words themselves.

also, I know, that with or without hearing anything, I will be a wonderful parent (when that day comes), but one thing that scares me, with not hearing a single sound my level of hearing what happens if my child gets hurt, and I don’t see it, what happens if someone breaks into my home, and I don’t hear it, what happens if there is a splash of water (never really heard before) and I don’t hear it, I don’t see it, and I loose my child? My children will sign, that is non-negotiable, but I also want to help them (if they are hearing) learn to talk, go to their school concerts, and be able to say, oh sweetie, yes, I heard that, it was wonderful.

Another huge reason I am choosing to get implanted, which is just over a month away, is because of my Job. I fix computers, yes, but I would like to be able to understand all of my clients, or hear when the phone is ringing, or be able to not always be 6-10 seconds behind while on the phone as I am now. Yes I am thankful for my sometimes accurate phone, it would be nice not to have people wondering why I am so far behind on the phone.

caption call phone, sometimes its right, sometimes its WAY off

there are times, though I know it would be illegal, that I am scared for the safety of my job, because of my hearing loss deafness. I am scared, that every miscommunication will be blamed on the fact that I can’t hear, that I can’t understand 100%, or sometimes even 50% of what people are saying (with lipreading), but that I will be told I need to find somewhere else to work because of it. because I am profoundly deaf, and that I will be stuck working minimum wage at a fast food place, sweeping the floor or doing the dishes… because people think thats a deaf persons place that is all I am capable of doing.

These aren’t the only reasons, but they are some of the major ones… and music, oh how I miss music.

I hope this helps people understand why I am choosing this path, why I am having my head drilled into for the possibility to hear… something, and maybe, maybe it will help people who are thinking about it for THEMSELVES to decide if it is something they WANT.

But I can not stress enough, adult, born deaf, late deaf, child (especially children) the importance of having a FULLY accessible language, through sign language. This will NEVER leave me, nor will my friends family in the Deaf community, there I feel normal, loved, never a burdon, and that is what every deaf, Deaf and hard of hearing person needs.

The Magical Powers of Mom

So I am starting to think that my mom has some magical powers. I have been thinking and thinking, and waiting to see when I can get my surgery date scheduled for my CI. I thought I would have to wait for my appointment with my surgeon (On June 15th) to actually schedule the surgery. They told me when I saw the audiologist that it could be 2 weeks to 6 weeks after my appointment for the surgery. Well I had my CT scan today, which just so happens to be in the same building as my CI center. When I informed my amazing mom of this, she decided she wanted to go up and talk to them about the billing stuff for my eval, because she hadn’t seen a bill from them yet. So we went up, mom started talking to the lady at the front desk, one thing led to another, and I have a surgery date!!! Its under two months away… activation is just over 2 months from now. I am amazed!! I am happy that I could (or mommy could) get my surgery scheduled now… because apparently he is pretty booked!

Here is the schedule so far!

June 28th

2:15 Pre-Op with Dr. Kelsall

3:00 Pre-Admission Testing

July 11th

Surgery (aprox at 12:30) I have to be there at least an hour and a half before the surgery

Mommy said she will be here with me during this time!!! and for my recovery.

July 24th (just under 2 weeks from surgery)

1 PM – activation with Allison Biever (Audiologist)

4 PM – Post-Op with Dr. Kelsall

mom talking with the lady from Rocky Mountain Ear Center

So it was a big day… and I think my mom has some sort of magical powers!!! The thing I need to be sure about is that they get me an interpreter for each of these appointments… because even just the little bit of lipreading today… in a medical setting… makes me want to scream…

anyways… here are two pictures of my mommy and I today!!

my amazing mom and I

mommy wasn’t too happy about the next picture… it cut our heads off

another picture of my mommy and me!