Self Advocacy - Hearing Loss is an Access Not a Learning Issue

Today's blog is by Michelle Bogaty Blend, M.A. CCC-SLP
Click HERE to read the article at SPEECH4HEARING.COM

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Doing vs. Knowing: Are You Raising an Excellent Self-Advocate?

Self-advocacy is a hot topic for children with hearing loss. For all children with disabilities, it is important to teach self-advocacy skills, but for the child with hearing loss, it is even more crucial. This is because hearing loss is an access issue, rather than a learning issue. Throughout life, people with hearing loss must use their advocacy skills to ensure access to the communication around them, whether at work, in the community (restaurants, doctor’s offices, etc…), or at social gatherings.
In this day and age, with technology as sophisticated as it has become (and it can only continue to progress from here), children born with significant hearing loss can be provided with technology that allows them to function in the hearing world. With an appropriate amplification fitting and with good listening and spoken language therapy, speech perception skills can be excellent in quiet environments and good to very good in noise and with soft speech, allowing the child with hearing loss to“fit in” within the mainstream classroom. However, none of the current technologies provide normal hearing. So, children with hearing loss still do not have equal access to instruction and communication. Thus, they still require modifications and accommodations. And while every teacher of the deaf and hard of hearing, educational audiologist, listening and spoken language specialist and hearing specialist works to ensure that access is equal and that effective communication is provided, it ultimately comes down to the child with hearing loss learning and using the self-advocacy skills necessary for making their needs known.
You can find many materials about self-advocacy for the child with hearing loss in textbooks and workbooks, as well as on the internet. There are checklists that exist which provide guidance about what a child should be doing at certain ages, including understanding of the technology, ability to troubleshoot, and ability to express listening needs to teachers, peers and others. Each of these skills is critical for promoting independence. However, use of these skills in all environments throughout life, often comes only after the child or adult is comfortable with his/her hearing loss and diagnosis.
I have learned that those individuals with hearing loss that best advocate for their needs are those that are comfortable with their hearing loss and see it as a unique characteristic, rather than a disability. I have had several children that I worked with who could easily rattle off how their hearing loss impacts their listening and communication skills and can clearly articulate the accommodations needed when not hearing optimally (e.g. moving seat, getting closer, asking for clarification, using the pass around microphone). However, why is it that often these children are not using these skills? Sometimes, it is because they don’t know what they are missing, but other times, it is a matter of self-confidence; the fear of standing out and being different or making their disability visible.
It has been my experience that the younger we start promoting an understanding of the impacts of hearing loss and a strong sense-of-self, the better. While I do not have the magic answer for each individual child (because every child is different), I do believe that the earlier the process begins, the more likely the child will accept his/her hearing loss as only one element of self-concept.
So What Can You Do?
Be a Good Model
Model the behavior you would like to see in your child. Be comfortable with your child’s hearing loss. Don’t hide it,  cover it up or pretend your child doesn’t have a hearing loss. From the early years, speak of the hearing loss as a matter of fact. When your child asks for pink or blue hearing aids and sparkly molds at a young age, go with it, don’t try to hide it. For your child to see her hearing loss as a difference, rather than a weakness may lead to better confidence and ultimately better advocacy.
Also, regularly acknowledge how you advocate for your own weaknesses. For example, show your child how you write a grocery list all week long so that you don’t forget what you need when you go to the store, or how you use a calendar to organize your busy schedule, or even how you need to ask for help to get something in a store that is out of your reach. Use self-talk to verbalize the problem solving skills that you use during these daily life experiences so that your child can overhear the process. For a child to see that everyone has weaknesses that require adaptations, can be very powerful.
Have Your Child “Own” the Hearing Loss
Make sure child understands his hearing loss. It is critical that your child understand how it impacts listening in different situations. Role play a variety of everyday situations and actions that can be taken. But most importantly make sure your child understands that his hearing loss is part of him, but that it does not define who he is or who he can become.
Maximize the Positives
Find your child’s strengths and then provide many opportunities for success. Remember the old adage “success breeds success”. If your child is a strong athlete, has strong mathematic skills or is a good cook, praise her for these talents. Be sure to focus on the strengths by not comparing them with the negatives of hearing loss.
Encourage Extra Curricular Activities
Once you have found your child’s interests, have him join in social groups related to these interests. Having common interests can help with forming bonds and friendships which will ultimately foster self-confidence. Encourage your child to join the basketball team, the art club, the swim team, the math team, the chorus, the cheerleading squad, etc..
Promote Independence
Make your child’s independence with her devices part of the daily routine from a very early age. The child that learns to put on her devices, change the batteries, know when something isn’t working correctly and troubleshoot issues with equipment is more likely to see the technology in a positive light.
Explore Technology
Continuously explore technological advances. Since technology is ever-changing, it important to regularly investigate new devices. Your child may be more accepting of an alternate technology, which might lead to increased usage.
Role Play
Teach your child to answer questions from peers about hearing loss and technology. The child who is prepared for these conversations is least likely to be discouraged by them. Help your child to anticipate what types of questions might be asked and what comments he might hear. Then role play these situations using a variety of appropriate responses.
Expose Your Child to Famous Role Models With Hearing Loss
There are many adult role models out there with hearing loss spanning differing interests, including sports, television and film, music, and politics. Expose your children to these role models. Athletes include Derek Coleman of the Seattle Seahawks, Lance Allred (a one-time Cleveland Cavaliers NBA player), The Silent Warrior (a professional wrestler), Ashley Fiolek (a profoundly deaf motocross racer who uses ASL), and Jim Kyte (a past NHL Hockey player). In television and film, role models include Marlee Matlin (Deaf actress who uses ASL), Rob Lowe (actor with unilateral hearing loss) Jane Lynch (from Glee who has unilateral hearing loss), Lou Ferrigno (actor with hearing loss who played “The Hulk”), Heather Whitestone McCallum (Miss America), Nina Poersch (recent Survivor contestant with cochlear implants) and Sean Berdy (Deaf actor from “Switched at Birth”). In the field of music, there is Beethoven, Brian Wilson (from the Beach Boys), Pete Townsend, and Phil Collins. In politics, there is Rush Limbaugh (who has bilateral cochlear implants) and Steven Colbert.
In addition to these, Marvel Comics, in conjunction with the Children’s Hearing Institute in NYC, has developed a comic book with the superheroes Blue Ear (with hearing aids) and Sapheara (with cochlear implants) to inspire children with hearing loss.

Are You Teaching Your Child with Hearing Loss Commitment or Compromise?

Today’s blog is written by Krystyann Krywko, who is a hearing loss educator
 and writer who provides resources and support for families 
who are raising children who are deaf or hard of hearing. 

You can read more of her work at www.kidswithhearingloss.org. 
Receive a free copy of her free mini eBook, Five Emotional Sticking Points of Parenting a Child with Hearing Loss, when you subscribe to her site.

The Great Compromise Hoax: How it Doesn’t Help Our Kids with Hearing Loss

Photo by: National Assembly for Wales

 Krystyann writes, 

 I had an interesting conversation with a friend the other day about commitment versus compromise. We were talking about how important it is to look after ourselves and that we had a choice either to commit to our health or to compromise it.

  • The classroom is too loud at the end of the day and your daughter can’t hear the homework assignment and so she falls further behind.
  • Your son mishears a key word as the teacher is writing on the board and while he pauses a moment to try and figure it out he falls behind in his note-taking.
  • The substitute teacher is not sure how to use the FM system so it remains off for the entire day.
  • The noise in the cafeteria is too loud and your daughter doesn’t hear that her friends are meeting in the library for recess. She goes outside and can’t find anyone.
  • Asking the teacher to write the homework assignment on the board.
  • Making sure the teacher knows that it’s hard for you to hear when they are facing the board, and could they please try to face the class. Other solutions could include having an assigned note taker, or having access to the teacher’s notes.
  • Showing the substitute teacher what they need to do to use the FM unit.
  • Telling your friends to make sure they have your attention before they make plans.


Our discussion centered on the idea that…
A commitment is an action of the mind; a promise that is based on knowledge. Making a commitment is hard at times. It is never the easy way in the heat of a tempting moment.
And…
A compromise is an action of the emotions; based on feelings, excuses, and rationalizations. Making a compromise is easy. Any little thing is an excuse to give into the impulses of the moment.
Later I took this thinking one step further and began to think about my son’s hearing loss and realized that part of my role as a parent is really about teaching him to commit to his hearing loss and his needs, rather than compromising them.
The word compromise has a warm and fuzzy feel about it. It’s that win-win situation that parents and educators love – where everyone is happy.
But, when a child with hearing loss makes a compromise in the classroom or in a social situation, a lot more is at stake.
These are all situations where your child needs to commit to their hearing loss. They need to be able to say “Hey, wait a minute. This isn’t working for me. Here is what I need.”
Teaching your child to commit to his hearing loss means helping him take the responsibility for what he needs to ask for to get his needs met.
And sometimes it’s a real bummer that your child always needs to be the one to put herself out there and ask for something, but others aren’t going to know what she needs unless she tells them.
Commitment looks like:
 Commitment is about honoring yourself and your needs and there is nothing wrong with teaching your child to take ownership about those needs.
How have you helped your child commit to their hearing loss? Would love to hear from others…


Teaching Mainstreamed Students with Hearing Loss Video for Parents, Teachers and Students, Zina Jawadi

                           Essential tips and techniques for teaching mainstreamed students with hearing loss (hard of hearing and deaf) in regular schools.
Researched, scripted, organized, and led by Zina Jawadi


                                                              



Tips For Communication With People With Hearing Loss

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While conversation comes easily to most people, for those with hearing loss it can be a frustrating, confusing and ultimately alienating experience.

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For the person with hearing loss even those that wears hearing aids or cochlear implants, it is important that other participants in the conversation employ helpful communication strategies like the ones listed below.  This will ensure that the person with hearing loss can understand and contribute to the conversation.


TIPS FOR COMMUNICATING WITH PEOPLE WITH HEARING LOSS

            • Position yourself to accommodate the person with hearing loss. Face them directly, in good light and on the same level. If they hear better in one ear, place yourself on that side.

• Do not try to talk to the person from another room. Those who are hard of hearing often need to see the talker to better understand what is being said.

• Speak clearly, slowly and naturally. Enunciate your words!

 • Do not shout or over-exaggerate facial expressions and mouth movements. This can seem to interpreted as rude or  aggressive and will only lead to confusion.

• Keep your hands and other objects away from your face. Hands, food and chewing gum  can make it harder to understand what you are saying.

• Be aware of background noise levels that lead to difficulty for the listener with hearing loss. If possible, conduct the conversation in a quiet area.

• Pay attention to the listener’s facial expressions. Do they look lost or puzzled? Are they just nodding or bluffing when they really are lost in the conversation?

• In a group conversation, take turns speaking. Talking over others if often confusing the listener.

• Get the listener’s attention before addressing them. This can be done with a wave or a polite touch on the arm.

• Remember to state the topic of conversation or when changing the topic so the listener can more easily fill in items misheard. 

• Lastly, do not simply repeat yourself over and over again if the listener does not understand something. Try phrasing the sentence differently, or write it down if necessary.