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Communication Access Communication Practices Communication with Family Connections Hard of Hearing Hearing Loss Personal advocacy Self Advocacy Setting limits

Communication & Boundaries

Communication is a chore in general. Add hearing loss and it’s 10 times more challenging. At Hearing Loss LIVE!, we say this all the time in regards to communication: We cannot do our part, if others don’t do their part. The following 3 guidelines are for our hearing communication partners – this is their part of the communication equation:

  1. Get the hard of hearing person’s attention first, before talking.
  2. Face that person while talking the whole time. The minute you turn away, sound starts to fade a bit. We need sound coming right to us. Also, seeing is hearing. We use facial expressions, body language and minor lipreading to help interpret the spoken language. 
  3. Be within 6 feet because the closer you are the better the sound quality. Again, seeing is hearing. 

Most of us hear enough to know people are talking, which makes hearing loss so darn confusing. We hear your voice but every conversation is a puzzle for us. Many of us are missing certain frequencies in speech, as in we don’t hear some  consonants. Part of the puzzle is filling in the consonant gaps with what we know of the topic. When you face us, the sound comes straight to us and we can use facial expressions and body language to fill more pieces of the puzzle. Number 1 and 2 are easier when you’re within 6 feet. 

Those 3 rules should be boundaries for all hard of hearing people. It doesn’t matter if we’re wearing hearing aids, cochlear implants or nothing. Those 3 rules are how we hear/understand.   The general population does not understand hearing loss so it’s up to us to let others know what works best for us. Be proactive. The 3 golden rules set your stage for better communication.

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“When we fail to set boundaries and hold people accountable, we feel used and mistreated.” Brene Brown

Making Your Boundaries Count

Julia: When we say we need to set boundaries, everyone squirms in their seats. They roll their eyes. There’s a few big sighs. Boundaries feel like a difficult thing but it’s okay to respect yourself. 

Actually, we use boundaries everyday, we just don’t realize it.

  • Do you use boundaries with co-workers?
  • How about your boundaries with your children?
  • What are your boundaries with your spouse?
  • Think about your extended family, what boundaries do you have with them?
  • Do these boundaries involve communication?
  • Have you changed boundaries based on the situation, the person, the event or in general, over time?

Sit down with these questions, with pen and paper, and think about it. 

Boundaries are a part of our everyday life. We don’t have the same boundaries for our five-year-old as we do when they hit their teenage years. Boundaries for your coworker, Jan, may look different than your coworker Jill.

How many times have you adapted, changed, and/or discussed communication boundaries that worked best for all parties? The hearing person and the one with hearing loss?

Talk to Your Hearing Partner About Communication

Why would you not want to sit down and figure out the role hearing loss plays in communication? To me, it only makes sense that hard of hearing communication boundaries need to be talked about, possibly changed and worked on. At home, with friends and at your place of work.

Work together. Having clear boundaries helps every member know what’s expected. In the future, you may need to change some communication boundaries because circumstances change. Other boundaries will stay the same. Don’t squirm in your seat and say you can’t do it because hearing loss has entered the equation. Y’all got this! Hearing partners join in, encourage growth and change. 

Personal Bill of Rights

Chelle: Edmund J Bourne created the Personal Bill of Rights in his Anxiety and Phobia Workbook. During a tough period in my life, I read this list of rights to myself often. It reminded me that I’m a valuable person and deserve some respect and happiness too.

Then I started thinking there should be a personal bill of rights for those with hearing loss too. ASHA (American Speech-Language-Hearing Association) has something similar on their website which was a good start, yet it needed some tweaking from the consumer perspective.  Here’s a few of the things we came up with…

  • I have the right to express my communication needs. 
  • I have the right to change my accommodations as needed.
  • I have the right to take hearing breaks.

(You can receive the full list by buying us one cup of coffee on our Buy Me a Coffee site.)

What Communication Boundaries Look Like

We often don’t want to be a bother to other people so we keep quiet on our communication needs. (I think we have our fair share of anxiety with communication.) Using the Personal Bill of Rights and our Personal Communication Bill of Rights might look like this:

  • If I’m at a friend’s house and they want me to watch a movie, or show, with them: “I need captions on. It’s the only way I can enjoy the movie also.” Then I show them how to turn them on and off. 
  • Assistive listening devices worked great for several years. However, when my hearing took another dive so my communication needs changed. I now need captions to enjoy events like live theater/the lecture/the class, so I can participate fully. Both accommodations are needed. I like to hear what I can and read captions too. 
  • When my husband wants to go out in the evening: “I am too tired to go out tonight. All my energy is spent. I need a hearing break so I’m going to stay home tonight. It’s ok with me if you go out tonight without me.”

Drawing my communication boundaries helps me at work, at home and while out in public. It’s not always easy and sometimes it takes a few tries to find what works best for me. Then I need to let others know. If I don’t let people know how best to talk to me, they are going to make assumptions. (See our blog on Collateral Damage.) With all the misconceptions out there, the assumptions are bound to be wrong. 

Green lawn in the foreground, a wood fence with blue sky. There ae green and yellow leaves hanging down from the top. Quote says: Boundaries are the distance at which I can love you and me simultaneously, by Prentiss Hemphill
Communication is a Basic Human Need

Gloria: Communication is a basic human need to connect.  We connect through our communication whether that be voice, text, captions, sign language, social media or email. We are establishing our identity, communicating our needs and sometimes wants.

Material Boundaries

When we are little,  playing with our toys, and when your sibling takes your toy you might say, “No!”  That is our start of knowing when to set boundaries.  It begins early in our lives.  I never told my children they had to share.  I asked them if they wanted to share.  Sometimes the answer was yes, sometimes it was no.  

Emotional Boundaries

Knowing ourselves and our needs first helps us to clearly communicate our choices. Respecting ourselves is essential for us to know what we need at any given time. Sometimes we have to set limits for many reasons and those limits can change due to fatigue, time, relationships, physical, and emotional needs. It is a way to  protect our energy, to survive in the turmoil of our everyday lives.  

When I was in China, my interpreter told me I was too nice and people would take advantage of me. I told her that wouldn’t happen because I knew myself, what I wanted to give and what I don’t want to give. I could be polite but recognize my own needs and respect them. No one can take from you what you don’t want to give. That was easy to do in a foreign environment. It’s not so easy to do within relationships of importance to us.

More Examples of Communication Boundaries

Communication boundaries in the HOH world look different but in reality it is the same concept. It is so easy to violate someone’s boundaries when you don’t understand their needs. First we have to know ourselves well enough to communicate that to others. Examples:

  • “I would love to have you come over today but I am exhausted from working late last night.  I would welcome lunch in a couple of days.” 
  • “It’s not funny when you make fun of me with the hand behind the ear gesture indicating hearing loss.” 
  • “ Be aware that I will take a little longer to communicate with you because I am determining if I heard you correctly and deciding how to respond.” 
  • “Yes, I communicate with sign language, CART and lipreading. I really want to understand.” 
  • In a large meeting: “Sir, I would appreciate it if you clip my microphone on your shirt so I can hear you.  I really want to understand your presentation.”  

These statements are an affirmation of our needs set as an expectation that they will be met. We require some accommodating on your part so I can understand what you are communicating. I respect you enough to find ways to communicate in a different manner that allows us to have a conversation. 

Different Strategies for Communication

In this manner we can set boundaries. In this way, communication can happen to establish relationships that will enrich us. The expectation is that our needs will be met because they are reasonable and not capricious. I am not making this up just to make you uncomfortable. They are valid requests. Just as you have needs and expectations that I will become aware of, we develop a relationship of kindness, caring and respect.  It’s always a give and take. I do not require more for my communication needs because I have hearing loss, I need “different” strategies in order to give my full attention to you. 

At times, I will be able to assess an individual’s personality by how accommodating they are to my communication needs. If a person is not able to adjust, I realize that he/she may have some difficulty with communication. I will communicate through email or text. I don’t judge their ability, I accommodate them. Just as I need some adjustments, so do they.  I respect them and myself at the same time.

Communication strategies and boundaries can be fun and exciting to everyone when applied with compassion and caring. Difference is not a negative, it is an opportunity to learn new skills and enrich your life.  Let’s have fun together.

Finding Your Own Boundaries

Communication boundaries will look a little different for everyone as we all have our preferences. We are all similar but also a little different. Explore. Experiment. Talk to others who have hearing loss. Then use what works for you and go with it…until your needs change or you find something else that works better. It’s up to us to figure out what works. If we don’t manage our hearing loss, someone else will. 

“Boundary setting helps you prioritize your needs over other people’s wants.” Lauren Kenson, health coach

Join our Let’s Talk Tuesday workshop.

We’re online and live March 7th at 6:00 PM Mountain time (adjust for your time zone). Join Julia, Gloria and Chelle to discuss Communication & Boundaries, we all learn from each other!

It’s online via Zoom with CART/live captions. There is no charge for the workshop. Register on our Events page.

Did you like this blog? See our other posts with Gloria:

Categories
Communication with Family Connections Emotions, Psychological Stress Hard of Hearing Hearing Loss Sensory Loss Vulnerability

Grief: Hearing Loss & Healing

Join our LIVE! Workshop on Grief: Hearing Loss & Healing with Gloria Pelletier on February 7th, 6:00 – 7:30 PM Mountain time online via Zoom. (Adjust for your time zone.) 

Registration is required, here is the link. This is a Let’s Talk Tuesday Workshop.

This post is written by Gloria Pelletier (M.S.W., L.C.S.W., L.I.S.A.C.) unless otherwise noted. This is the foundation for the workshop, which explores other aspects of grief.  

The ability to hear connects us to our world in many ways.  From treasured contact with friends and family to maximum performance in the workplace to physical safety.  Hearing provides deep and important connections that no other sense can replace.”  (Hearing.org)

Blindness cuts us off from things, but deafness cuts us off from people,is a moving quote often attributed to the famed 20th-century activist and educator Helen Keller, who achieved a remarkable career championing the deaf and blind. Those with serious hearing loss often cite this quote. (AARP)

Hearing loss as a stressor in many people’s lives?

Let’s explore where hearing loss occurs in the ratings of stress in society. Below is an older chart of stress which is still the foundation of many other charts for loss.  As you can see, hearing loss rates with number 6 as a “Personal Injury or Illness” with 53 points. We could also add in number 11, with change in health of family members, which is another 44 points.  (You can add other stressors together.)   

For more info: https://en.wikipedia.org/wiki/Holmes_and_Rahe_stress_scale

That is a huge amount of stress that is unchangeable. One cannot go back to hearing normal again and most likely will lose more hearing as we age.

That level of loss often creates grief. Elizabeth Kubler Ross’s stages of grief are well known (denial, anger, bargaining, depression, and acceptance). Now a person has gone from multiple stressors in their lives to grief.  How did they get there?

Grief isn’t always about death.

It can be the loss of communication as we know it. The inability to communicate, the very foundation of relationships, changes our lives profoundly without warning. Meaning without our permission, sometimes without an illness, without our knowledge – our ability to communicate is permanently altered. There is a sense of loss, uncertainty, isolation, not feeling safe and other overwhelming emotions.  

One of the key functions of hearing is a response to speech, the primary way we connect and communicate, emotionally and intellectually with each other.

A discontinuation of communication: 
  • Can’t understand speech with background noise
  • Need more volume to understand
  • Requests for repeat
  • Requests to speak slowly
  • Withdrawal from conversations
  • Avoidance of social situations, isolation
  • Uncertainty of our understanding of speech
  • Disruption of speech continuity
  • Muffling of speech and other sounds
  • Relationship changes

Hearing Loss is more profound and far reaching than our society has recognized.  Communication is our means to our relationships and family.  Once interrupted, how do we heal?  

Healing:

“…. acceptance takes many forms for different people, but it usually indicates some integration of the loss into one’s life. In this circumstance, acceptance may mean having all the negative feelings about one’s hearing loss while not letting those feelings interfere with relationships and daily life. When going through the stages of mourning, functioning may be affected over the short term, but the person usually will move toward some degree of acceptance. If they do not, they may need emotional support from either a therapist or a support group.”  Kaland, Mary and Salvatore, Kate  The Psychology of Hearing Loss | The ASHA Leader

Some tips that Hearing Loss LIVE! (HLL) has already expressed for healing:

Find your tribe.  Meaning find people with hearing loss that understand your situation and can relate to your experiences.

Information:  

Discover information that helps you understand your hearing loss.

  1. Take “Living Well with Hearing Loss”, an upcoming class with Dr. Ingrid McBride AuD and Gloria Pelletier, LCSW.  
  2. Lip Reading Concepts & Lip Shapes LIVE! classes with Hearing Loss LIVE! (more info)
  3. Upcoming Seminars/Workshops geared to the mental health field for hearing loss. (Chelle Wyatt,  HLL and Gloria Pelletier, LCSW)      
  4. Hearing Loss Live Series of collaboration of topics by Gloria Pelletier, LCSW
  5. Support groups: Hearing Loss Association of America, SayWhatClub and Association of Late Deafened Adults.
  6. Know how hearing loss affects your communication, relationships and ways to mediate them. 
Role Models: 

 Find an organization or person who role models for you how to live with hearing loss and have integrated their hearing loss with their lives.

Americans with Disabilities Act (ADA):  

Know your rights under IDEA, Section 504 and Section 505. Become informed about your disability and how to request accommodations.  Request loops in church, city hall, theaters.  Make sure you have your audiologist turn on your telecoil in hearing aids and cochlear implants. 

Vocational Rehabilitation Agency  

If you qualify, insist on equipment for communication, classes in rehabilitation for hearing loss, knowledgeable Rehabilitation Counselors.

Psychological Assistance

Insist your therapist or counselor has minimal requirements of knowledge for hearing loss and its effects on your communication and relationships.  There is no shame in asking for help in rehabilitation of your communication with family and society.  It is your right!!!

Art

Express your feelings and emotions through any form of art. Self expression through painting, crochet/knitting, mosaics and so much more. Creation eases some of the pain of grief a.

Hearing Loss LIVE! comments…

Chelle: Since my hearing loss didn’t come from an injury or illness (that I know of), I forget it falls into the personal injury and illness category.  Living most of my life with hearing loss, I know how it affects family dynamics. After my hearing test last month, I am experiencing some grief. (I’ll have another blog for that soon.)

Julia: Hearing loss grief affects the entire family. Open the communication channel from the get go. Tell each other what your grief looks like. Healing takes time for both of you, and that’s okay. (This too is an upcoming topic.)

Other posts you may like…

If you liked this post, learn more about Hearing Loss & Collateral Damage to see how it affects family and friends. In April last year, we posted The Emotional Side of Hearing Loss which ties into grief.

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Did you like our post? Check out our Buy Me a Coffee website. Find out how you can further support us and and efforts to spread awareness.

Categories
Communication Practices Communication with Family Hard of Hearing Hearing Loss

Communication with Family, Friends & Coworkers

All too often the person with hearing loss takes on the sole responsibility of communication. It is a heavy burden… and it’s not realistic. Everyone has miscommunication issues at times. It takes two to make communication happen, even if it’s two hearing people, one person with hearing loss and a hearing person or two hard of hearing people. All people have to do their part; at home, at work and out in public.

“Go get hearing aids and everything will be fine.” Ummm…yes they will help but no, they don’t solve the whole problem with hearing loss. Hearing aids & cochlear implants help but they do not give us natural hearing abilities. Even with our hearing devices, changes are needed on both sides for proper communication to happen. If our hearing family, friends and coworkers don’t do their part, we cannot do our part

3 Golden Rules

  1. Get the person’s attention with hearing loss before talking. 
  2. Face them the whole time while talking.
  3. Be within 6 feet for line of sight and a direct line of hearing.

Why? Even if we don’t know it, we all lipread to some degree. It gives us a second to shift gears and focus. Our hearing devices have limits, they aren’t called ‘hearing miracles’ for a reason. Using these 3 rules as a healthy communication boundary will create new communication habits and they will reduce everyone’s frustration. 

Communication rules for rough patches.

Julia: My husband has a mild hearing loss. In recent months it’s become a little more obvious. Just the other day it became apparent that my youngest may have to go to the audiologist soon. He is 22 and odds are his insurance will not cover hearing aids so I am unsure what this will even look like. Luckily, we have practiced the three golden rules for many, many years. Though neither have hearing aids, yet, our communication rules have helped us through rough patches.

Julia and family.

Here is what I want to make folks understand, why I get all up in everybody’s jammy, to get in the know. 

Hearing loss or dementia???

My husband is 20 years older than me. One day seven or so years ago, he started showing what I thought were signs of early onset dementia. He was asking me the same questions over and over, questions that had nothing to do with what we were talking about. He had trouble understanding others while on his cell phone but instead of saying I didn’t hear you, he went silent or made excuses on why he didn’t respond. Anger was quick when he didn’t understand or if he answered wrong. This left me questioning what he could and couldn’t comprehend. There were a lot of blank stares when I asked him questions.

By coincidence, around the same time I captioned an event at our local HLAA Chapter that was about knowing the difference between hearing loss and dementia. WOW. The light bulb went off!!! I went from stressing over where I would place him if I could no longer take care of him, to researching Bluetooth options at home to help him hear. 

Here’s the deal…

Odds are, he isn’t going to get hearing aids any time soon (as I said at least seven years plus folks) and I’m not going to make him without him being ready first. His hearing loss is still mild. With Medicare now helping pay for hearing aids, and over the counter, I know we have options. And because I have worked closely with my HoH relations in Utah I know most of the Audiologists and who we will go to when he’s ready.

Here’s what I think I’m getting at. Hearing aids or no hearing aids, hearing loss is about communication changes. Hearing partners have got to do their part. If they don’t, misunderstandings set in. Anger drives the misunderstanding and up goes the collateral damage for both parties. Practice the 3 golden rules everywhere. I am here to tell you to practice it with:

  • Your kids, young and old
  • Your grandkids
  • Your coworkers 
  • Your parents
  • Your significant other

It will become a habit. 

Practice, practice, practice!

Chelle: I brought my husband to work to talk about communication in our relationship. Julia, Ken and I talk about what it means to have someone with hearing loss in the family on our podcast. He explains the grief he feels losing casual conversation. You can watch, or listen to, our podcast to find how we deal with miscommunication. No one is perfect, including us.  

Focus on progess, not perfection.

Over the years, I’ve helped many people become aware of hard of hearing communication needs.  My mom listened. She learned and she recognizes the signs of hearing loss. She now helps others understand hearing loss. 

Earlier this week, she told me about going to a lab for blood work. The staff all wear masks. There was an older lady who couldn’t understand what the staff was telling her. My mom told her friend, “She can’t understand because they have masks on.” Her friend wanted to know what difference that made. My mom replied, “She lipreads and can’t see what they are saying, like Chelle.” Later in the elevator, that lady confessed to my mom’s friend that she indeed uses lipreading. (Mask also taught many of us how much we rely on lipreading.) 

Chelle and family

Luckily my whole family is accommodating. As I learned more about hearing loss, like how I heard…what made it difficult…hearing aids had limits and more; those closest to me understood more. I shared my  journey with them through blogging, breaking down my HoH moments. My parents, my boyfriend (now husband) and more read them. I talked and talked. I’m still talking! Make your family a part of the solution when having problems. If there was a communication breakdown, ask them to help you find a solution. 

Share your journey. Help people become aware. Educate yourself. Introduce hearing loss in a conversation. One in five people have a hearing loss so chances are they have someone in their family with hearing loss. Or they know someone at work with hearing loss. Our conversations make a difference.

Share the 3 Golden Rules

Use the golden rules. Let’s get the word out so more people understand our communication needs. We aren’t just helping ourselves, we are helping all others who come after us.

Feel free to use this meme.

Did you like this blog?

You might like Hearing Loss: Family and Communication.  You  might also want to check out Finding Your Tribe. Good ideas come from those who have already walked the walk. 

If you like our information, Buy us a Cup of Coffee. Phase one of our business is completed. Most of our content is free to help those in need; podcasts, blogs, workshops, presentations and more. We will keep these things free because we are passionate about people becoming more successful with their hearing loss.

Phase two begins. We are currently crowdfunding through Buy Me a Cup of Coffee. This will get our feet beneath us. Starting in January 2023 we will continue our Lipreading Concepts class for which there is a small fee. We are adding a Lip Shapes class. We are excited to add sensitivity training to our services as there is a huge need for the public at large to understand HoH communication needs. Employees and clients with hearing loss are misunderstood. We led a training last year with the Women’s Business Center which successfully cleared up misconceptions.