HOH Ettiquette 101...

I found this interesting article at http://www.haverford.edu/HOH.html and thought it had some useful information that we can all use to communicate more effectively with HOH and d/Deaf individuals (these are just some highlights)...

Hearing loss effects approximately 16 million Americans. It is a complex condition which runs the gamut from minor to pervasive hearing disability. The varying nature of the condition is reflected by the range of vocabulary utilized to describe hearing loss. "Hearing impaired" is a general term which can encompass any type of hearing difficulty. "Hard of hearing" signifies hearing that is defective but functional, and "deafness" indicates that perceivable sounds have no meaning for general life purposes. Of the 16 million Americans who are hearing impaired, it has been estimated that 2 million are deaf.

Hearing impairment also has a wide variety of onsets and causes. Hearing loss can occur pre-lingually, post-lingually, or pre-vocationally (after early childhood but before age 19). In addition, hearing loss can originate in different ways. For instance, hearing loss is considered conductive when it is caused by diseases or obstructions in the outer or middle ear. Hearing loss is sensorineural when it results from damage to sensory hair cells of the inner ear or nerves that supply it, and such hearing loss can range from mild to profound deafness. Problems of the outer ear or middle and inner ear are considered mixed hearing loss, and central hearing loss results from damage or impairment to nerves or nucei of the central nervous system , the brain, or pathways to the brain.

The Hearing Person's Responsibility for One-on-One Conversation

1. Get the hard of hearing or deafened person's attention; tap on the shoulder, wave, or light flashing.

2. Look directly at the hard of hearing or deafened person when speaking.

3. Ask which communication option is preferred: lip reading, writing or use of an interpreter.

4. Use every-day topics of conversation. Do not focus on the hearing loss or the person's lack of use of sign language.

5. When speaking to people who are hard of hearing or deafened, key them into topic changes in the conversation.

6. Be friendly, patient, positive and relaxed. Be yourself.

The Hearing People's Responsibilities with People who are Hard of Hearing

1. If writing, keep message short and simple. It is not necessary to write every word.

2. When speaking, face the person who is hard of hearing directly to see if your message is understood.

3. Avoid standing in front of a window or under bright lights where the glare and shadows on the face make it difficult to lip read. If one is aware of the lighting problems, change one's position willingly when requested by the person who is hard of hearing.

4. Speak clearly and normally at a moderate pace. Do not shout or exaggerate pronunciation. Use short sentences but NOT baby-talk. Rephrase or repeat if you are not understood. Inform the person who is HoH if you are changing the subject.

5. Do not cover one's mouth or place anything in one's mouth when speaking.

6. Ask open-ended questions that must be answered by the person who is HoH with more than a "yes" or "no" to ensure full understanding.

7. Use pantomime, body language and facial expressions.

8. Be courteous to the person who is hard of hearing during the conversation. Do not ignore the person who is HoH and carry on a conversation with another hearing person while the person who is hard of hearing waits.

9. When in doubt, ask the person who is hard of hearing for suggestions to improve communication.

The Hearing People's Responsibilities with People who are Deafened

1. All the above responsibilities apply in conversations with the people who are Deafened when there is NO interpreter present, but do not expect exactly the same results. The hearing losses of the people who are HoH vary greatly in severity whereas the people who are Deafened are profoundly deaf.

2. When using an interpreter, the person who is Deafened will decide the proper lighting - never against a window or in a dark corner.

3. Maintain eye contact WITH the Deafened person while the interpreter signs. Talk directly to the Deafened person at your normal speech rate.

4. Do not talk WITH the interpreter or ask questions of the interpreter. The interpreter's job is solely to convey the conversation between the Hearing and Deafened people. The interpreter is not a participant in the conversation.

Group Rules of Communication for Both Hard of Hearing and Deafened

(Classrooms, staff/committee meetings, large groups)

1. Only one person speak at a time.

2. Raise hand to signal one's desire to speak.

3. Remember the hard of hearing and deafened folks cannot lip-read or watch the interpreter or read live captioning and simultaneously read from papers, manuscripts, letters, etc.

4. If possible, give necessary information to the hard of hearing and deafened people before the meetings take place.

5. Group meetings should always have a note taker or have minutes of the meeting available.

6. If meetings are long, plan a break for the people who are hard of hearing and deafened as well as for the interpreter, if one is being used. This is to avoid fatigue from intense concentration.

7. The T-switch is electronic and makes a direct sound from the speaker with the microphone or phone to the hard of hearing person's hearing aid, thus cutting out background noise.

Communication Responsibilities of People who are Hard of Hearing and Deafened

1. Inform the people who are hearing as to whether you are deafened or hard of hearing.

2. Inform people of your communication preference - lip reading or hand written notes, interpreter, for one-one-situations.

3. Do not bluff or fake it. It is best to be "up front".

4. Pick the best spot in which to communicate by avoiding areas that are poorly lit. A quiet environment with few distractions is best.

5. Ask for written clues of key words in the conversation, when needed.

6. Request the speaker to repeat information if you are unsure or do not understand, especially if you need exact information as to name, time, place, etc. Repeat back to get confirmation.

7. Arrange frequent breaks if discussions or meetings are long. Fatigue causes communication breakdown.

8. Know what your needs are in any given situation as well as your rights to access. To assess a communication situation, ask yourself the questions - when, what, where, why - and determine which type of communication is needed: interpreters, live caption, amplified phone, loop system, TTY, note taker, etc.

9. Be prepared to provide phone numbers for the interpreting referral service and live caption service.

Mouldy Ears...

It seems like this whole process has taken a lifetime, but really it has only been almost 2 mos. That is almost the length of time Sydney has been on this earth. She has no clue what's been going on, and to her this is normal, but to me it has been torture. From all the reading I've been doing about hearing loss in infants it is critical to get them fitted with hearing aids ASAP. The sooner the auditory nerve is stimulated the better chances they have for developing natural speech. Otherwise their brain will just map to use the other senses. They don't really start counting her speech development until she is fitted with hearing aids.

We finally met with her audi that would be fitting her with hearing aids (H.A.). It was a much anticipated visit. I asked her a ton of questions. The most important what will she be able to hear with the H.A's and will she develop natural speech. She says she should be able to hear birds and yes she has a good chance of hearing all the sounds she needs to develop natural speech. If you look at the audiogram I posted earlier it will show where on the different letters in speech fall according to volume and pitch and it also shows where different sounds fall.

We decided on getting the Phonak Nios Micro V H.A.'s. We chose the purple translucent H.A.'s for her. We want her to be proud of who she is. The audi had to take moulds of her ears by shooting silicone into her ears. These get sent off to a lab to make custom ear moulds for her. The H.A.'s are programmed for her specific loss so she can get the best sounds possible. But H.A.'s are not like eyeglasses. Hearing loss can distort sound and these are just amplfying distorted sound. It is also hard for hard of hearing (HOH) to focus on one person when people are talking in the background etc. FM system can help with this by allowing a teacher or parent to directly link into the H.A.'s so their voice in at a higher volume than the backgound noise. Speech therapy and the Early Start program also help with this as well. So now we have to wait another month before she actually receives her H.A.'s. Since I am behind on my blogging, this will be next week. I am excited and sad at the same time. Excited to see her reaction to sound and sad that this is going to be more of a reality for us.

In Between...

In the meantime while all of this hearing testing was going on they did a whole other battery of tests on her. We visited with the geneticist and he went over our family history with us to see if hearing loss runs in the family. He did a physical on Sydney to rule out various syndromes related to hearing loss that are physically visible. He checked her heart and had her blood drawn to test for additional more common syndromes and ran some genetic tests.

We also saw a cardiologist so he could review Sydney's EKG results and chest x-rays and rule out syndromes related to the heart and HL. The EKG went smoothly she slept through the whole thing. The x-ray was hard to watch. They strapped her into a giant test tube with her arms up in the air while they took a couple of x-rays. Sydney was not happy about this. Thank goodness the techs were very quick with the process though. Her ticker checked out ok.

We also visited with an opthamologist. He checked her vision to see if she was tracking objects with her eyes. He shined a bright light in her eyes. She was more intrigued by the light than upset which was cause for concern for him. So he dilated her eyes to check more closely. He said everything looks good as far as he could tell. He said they don't usually test for Ushers Syndrome unless she has balance and posturing issues. Then they will perform an ERG.

We were also referred onto an early intervention program called Early Start through the county. A Teacher of the Deaf (TOD) met with us and did a thorough assessment of Sydney and her development. She discussed the program with us and our various options moving forward. We meet with her on a weekly basis and will eventually begin meeting with a speech therapist. She has been teaching us sign language and we've labled our house with some common household words in sign. We have decided to use pidgeon sign for now as well as speech to communicate with Sydney. We figure she won't be able to hear us when her hearing aids (H.A.) are off so we need some way to communicate with her. There are many different communication options to consider though and it may change and evolve over time.

Needless to say it's been an emotionally taxing roller coaster ride trying to get to the bottom of her hearing loss. All we can do is remain hopeful and take it day by day and love the precious gift that was given to us.

Hearing Screen (Take 2)...

One week later we drove out to Oakland to get Sydney retested. They have a pediatric audi there that specializes in infant hearing screens so I felt a little more comfortable. This time she was able to get the typanometry reading right away showing that her middle ear was normal. She was able to perform the ABR on just one ear and again we ran out of time. We had to wait yet another week to finish out the test. Thankfully Sydney was extra tired and stayed asleep for 3.5 hours of testing. This time they were able to get a bone conduction test as well. We are still awaiting the final final results of this test, but the initial review of the test showed that Sydney's hearing is slightly better than previously expected. The above audiogram shows her hearing loss. Her Dx this time was mild to moderate loss in her left ear (blue x's) and moderate to severe in her right ear (red o's). This was great news for us. She has a much better chance to do great with her hearing aids and develop natural speech.

The Results (Take 1)...

The day that we long awaited finally arrived when we would get the results of the hearing screen. That morning I received a call from the early intervention program. The woman explained that they had received Sydney's results and that she was eligible for her services. I told her I hadn't even got the results yet and asked her what they were. She told me she had a severe to profound loss her right ear and a moderate to severe loss in her left ear. I was in shock but did not know enough about the subject to process the information that was given to me. I was upset that there was a hearing loss I just didn't know what it all meant at this point.

Sydney was only 37 days old but I felt like at least an eternity had passed since we first started the testing. After the news from the early intervention program, we left for the appointment with the audi. She didn't seem well prepared on how to deliver the news. She fumbled with the paper work and tried to explain normal hearing on an audiogram of an anonymous patient. Then she broke the news that we had received earlier over the phone. This time it seemed final and official. I was sick to my stomach and tried to hide my emotions as I had a list of questions I needed to ask her. We asked for a second opinion hearing screen to be sure of the results. She answered our questions, but didn't offer much reassurances or any resources to help us through the situation. I left there devastated and very alone.

Hear We Go Again...

As a first time mother, it was really scary going though this limbo state of not knowing what was going on with our daughter. Every day seemed like a year, I was getting really anxious for the next appointment. Finally, the day came. We had to keep Sydney awake and unfed for 4 hours prior to the screen to ensure that she slept soundly throughout the test. Well trying to keep a newborn awake is near impossible. My sister suggested using ice. This worked very well, but it was torture as a mother to have to listen to Sydney crying the whole way to the hospital because she was so tired and hungry.

This time the audi repeated the tympanometry test and the ABR tests on both ears. It can be a difficult process trying to keep Sydney perfectly still and quiet for 2 hours while not interrupting all the wires attached to her head. The Boppy pillow definitley helped make it a little easier. After the tests were complete I was hoping that we would finally know the outcome. The audi informed us that she would need to review the results and do some calculations. It would be another week before we would know the outcome. Ugggh...

Will We Ever get the Results...

I tried not to agonize over the upcoming hearing screen, but it was constantly in the back of my mind. We would try to do our home tests such as clapping our hands behind her back. Watching her to see if she startled in her sleep when the dogs barked etc. Her pediatricians reassured me that it was most likley fluid in the middle ear that was giving a faulty reading. This made sense to me since I did retain a lot of fluid while I was pregnant.

Finally, the long awaited day came that we would get her hearing evaluated by an audiologist (audi). We went into a sound proof room with Sydney and the audi then proceeded with a tympanometry test to test for fluid in the ears. It came out flat. She fiddled with the machine and the ear plugs for probably and hour repeating the test over and over. It kept coming out flat. I asked the audi what that meant, and she told me that she has fluid in her ears. What a relief that was. She repeated the test again, this time the reading on the graph showed a smooth peaked curve. I asked the audi what that meant, and she told me that it meant that her middle ear is healthy and that there is no fluid trapped in there. My heart started pounding a little harder and I started to get really concerned.

The audi then placed sensors on her forehead neck and behind her ears. She then proceeded to the OAE test which took about 10 minutes per ear. Lastly was the ABR test which took about 45 minutes per ear. The audi kept looking at Sydney and checking the wires hooked up to her with a serious look on her face. This was not too comforting to see. Unfortunatley, we were only able to finish the left ear before we ran out of time. The audi told us to come back in two weeks to have the right ear tested. I asked her if there was any information she could give us about her results. She said we would have to wait until all testing is complete.

Welcome to the World...

Sydney Marie was born April 29, 2009 at 9:20 p.m. She was so precious and alert when she was born. We couldn't have been happier and more excited to have her in our lives. Her apgar scores were high and everything seemed to check out ok. We were relieved that the delivery went well and she was healthy. We were pretty worn out from all the activities of the day and all the nurses coming and going throughout the night. I remember one of the nurses telling me that Sydney didn't pass her newborn hearing screen. She mentioned that Sydney was crying during the screen so, I didn't think much of it. When it came time to be discharged, they repeated the hearing screen. This time Bernard and I were both in the room and Sydney was sound asleep. We waited anxiously as they conducted the test. Seventeen minutes later the test ended and we were handed a print out with "refer" listed for both ears.

The nurses explained Sydney would have to see an audiologist (audi). Then they excused the failing screen as probably being fluid in the ears and not to worry. I was trying to stay calm but I couldn't help but feel really concerned and worried. This was all uncharted territory for me being our first child, I never knew the insurmountable love I would feel for this little one, mixed with a situation that was totally out of my control. It was a pretty helpless and sinking feeling. I decided to be hopeful and positive and try not to think about the upcoming appointment.