Sleep…What’s That?

Sleep is what rejuvenates you and help you get through the day, keeps you healthy, and keeps you SANE. As a chronic insomniac it is a wonder I am not a crazed, drooling, needing a padded room and straightjacket person every day. I am sure my toddler is grateful that his Mommy somehow manages to function daily on what amounts to subpar sleep.

Everyone has trouble sleeping at times, caused by illness, stress, too much caffeine before bed, indigestion, or rampant thoughts running through their heads. Last night I dozed off early but when my husband came to bed, I was wide awake. I tossed, turned, tossed and turned for an hour after that and came downstairs. What was keeping me up you ask? Two things that plague me nightly, achy joints, restless leg syndrome, and this SOUND. This SOUND in my ear, which last night was a raging motorboat engine type of sound. Tinnitus has been plaguing me for years, since my teens, and always seems to keep me up at night.

It never stops, and there are days it’s quiet and almost non existent. It changes too, in loudness, in tone, even sounding like morse code being tapped in my ear. WAIT… But aren’t you DEAF? How are you hearing things without your hearing aid or sound processor? I know, that’s the kicker. Tinnitus is an Auditory Illusion. I am not really hearing the SOUND, my stupid brain thinks it is. When I received my cochlear implant, they told me it might make it worse, and it might make it better. The first few months after the surgery was horrendous, the SOUNDS were constant, ever changing, and so LOUD. I constantly marvelled that I wasn’t broadcasting it to everyone around me.

Since then it has gotten better, I have more good days and nights than bad. Right now though, even with the sound processor on, I can still hear the SOUND circling around in what feels like my ear canal. Incessantly spinning, whirring, high pitched sound of an alarm of some kind. At night I sometimes lay in bed and wonder if some alien got into my head and planted some kind of radio transmitter. Certainly sounds like it in my head at times, tapping, beeping, whirring, roaring, and ever changing in volume and speed.

Yeah, it’s a wonder I am not in a padded room, in a straight jacket mumbling about aliens and how they’re coming, and screaming at them to get out of my head with how little sleep I get. I count myself lucky to get five or six hours in a row of unbroken sleep. Most nights though it is broken up or non existent, and sometimes I do wake up wondering if I slept at all. I’m lucky my toddler has always been a good sleeper, because waking up to take care of him when I finally fall asleep is the pits. It does happen though, and as I am not working, I am the one that gets to go soothe him, and check on him. Then I start all over again trying to ignore the sound and fall back to sleep.

SLEEP, how I love thee, let me count the ways…

ZZZZZZZZZZ…………………………..

Sorry, guess I dozed off there…

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Waiting for Inspiration

Writing isn’t an easy thing.. Even when I seem to post daily…

It requires inspiration, a topic, and actual time to sit down and write, which is hard to do caring for an active toddler, and two older children. Then there are the house hold chores, that get neglected by playing with the toddler. Or a visit to the emergency room two days in a row for abdominal pains.

So while I am busy.. Review some if my favourite posts:

Social Butterfly… I Am Not
A Christmas Party
A Message to Employers
Communication Strategies
Not A Sideshow Performer

There are so many good posts here, so if you haven’t explored the archives, and the links, please do.

Stay Warm! This winter has been rough! I’ll be out skating later with the other two, yikes!

Not A Sideshow Performer

I participate in a couple online FaceBook groups for cochlear implant recipients like myself, or parents of implanted children. In one of them, a member who was recently activated, commented that some of their friends has been testing the new “hearing”. They were still acclimating and adjusting, and yet these friends were trying to see what they heard. Talking in noise, mumbling, not looking at them, and so on. Apparently that seems to happen to a lot of new recipients as there was a flurry of responses all agreeing it was one of the single biggest complaints they had about their friends and family.

For me, in the past, I was asked to show off lip reading skills to my teen friends, which I did occasionally. Still, it does not mean that I was comfortable with it, not only because I could easily get something wrong, and sometimes did, but that it didn’t seem to educate just how hard it is to lipread without sound. They didn’t get the point that I still needed to hear as well. Since my activation, I honestly have not encountered this annoying and rude performance request yet, and hopefully I won’t. I’m grateful that the friends and family I have are considerate, and genuinely want to know how things are going, and ASK me, rather than test me.

Others are not so fortunate, for example; one poster commented that she would point blank throw it back at them, basically retorting something along the lines of :

“It makes me sad that you cannot share in the special hearing moments I have been having lately. It kind of reminds me of how much further I still have to go, and how much more work is ahead of me. I’m sorry you cannot be happy for me” (paraphrased)

This seems to usually have a powerful impact on the person, and they usually ended up apologizing to her. However, there are many who just don’t get that we are not sideshow performers, and shouldn’t be treated as such. To so do, means we are seen as freaks, and not the human beings we are, who took a chance to gain entry into the world of hearing.

Another poster said she ignores the person who continues to test her, after she explains that it is still a work in progress. She also said that when asked why she was ignoring that person, her response was that:

“It is hard enough being Deaf, without people like you nagging me on what I can hear or not hear, while I still struggle so much with my hearing. It is no different than the way you struggle with your body image issues and insecurities.” (Paraphrased)

In her case it was usually friends and family that wanted to see for themselves the cochlear implant truly was working. They didn’t mean to offend or hurt her feelings, but it was certainly an annoying thing to deal with.

A member of the group pointed out that we live in an instant world, where we want instant gratification and progress. She is quite right in that, as many think the cochlear implant is an instant fix or cure of the Deafness. They don’t understand that it doesn’t work the same way a hearing aid does, which simply amplifies sound. What people don’t realize, and I’ve explained this myself to family and friends, and through some of my posts, that there is a lot of brain training happening. We are training our brain to recognize the sounds we hear, and discriminate speech sounds. Hearing people don’t realize how much work it is, and in fact, it’s much more work than it once was with the hearing aid in my opinion.

When family and friends test our new hearing, or ask us to “perform” for them, it is very rude, inconsiderate and even hurtful. Why should we perform as if we are freaks in a Sideshow Circus? Are we not in a modern age? Should we be tattooed and pierced to the nines too? Are we expected to stand on a stage and delight others for their entertainment? If we are, then we should earn a fee for that and sell tickets so that we can fund our upgrades and accessories or replacements, because that’s very expensive for us.

I think not.

We prefer to be asked questions like: “how is it sounding?”,”what’s been the most special moment?”, “explain to me how it works”, or “what is auditory verbal therapy?”. We would rather explain things than show you, or at least have the choice to show you of our own free will. We need and want our friends and family to understand that it isn’t an overnight event, it takes time, work, patience, tears of joy and frustration and even sadness. We need support and encouragement, not being asked to perform like a little circus flea or a sword swallower. This is our journey, and adventure, and we are not here to entertain others unless we choose to.

So please, be considerate, and :
THINK before you test us,
THINK before you nag us,
THINK before saying something that we may take offence to.

And:

RESPECT our feelings
RESPECT that we require patience and support
RESPECT that we still need you to help us as you did before, making sure the environment is at it’s optimum and we can lipread you and hear you before you speak.

We don’t want to be tested, we will be doing enough of that in the first few years as we tweak, and perfect the programming of our sound processors. As part of the process our audiologists do enough testing on us, thank you very much.

We are not Sideshow Performers.

Auditory Illusions

I suffer from tinnitus, why , I don’t know but I have been suffering from it since my late teens. It wasn’t always constant, I had more good days and nights than bad. Gradually though, it became 24-7 and extremely annoying at times. Tinnitus are auditory illusions that you hear in one or both ears, varying in volume, intensity and sounds. Ringing, beeping, tapping, even a morse code like sound, it’s so annoying and loud at times that it’s a wonder I am the only one that hears it. It affects my sleep. It affected my hearing tests, and still does even with the cochlear implant. Nothing drowns it out, or makes it go away. The sounds aren’t real, the brain just thinks they are, which is why they are called auditory illusions.

What causes tinnitus? Many things could cause it like: stress, exposure to sudden loud noises, or constant exposure to loud noises, caffeine, salt intake, an underlying health issue, even medications. Little is known about tinnitus or how to alleviate it, but sometimes, white noise, eliminating caffeine and salt, and stress can help.

I’ve become an insomniac because of my tinnitus, which is why half my posts come during the middle of the night. I think sometimes it is amazing I haven’t turned into a raving lunatic because of the lack of sleep, and the constant noise. My toddler is lucky that I somehow manage to get through the day on so little sleep.

Someday, maybe it will be cured. Until then, I guess I will try to ignore the alien morse code tapping, and ringing. And pray I can keep from becoming a raving lunatic in a straightjacket, waiting to get taken to a padded room while screaming “the aliens are coming!”

Crash, Boom, Roar!

Crash!
Boom!
Roar!
Vrooooom!

These are some of the sounds I hear daily, over and over as my toddler son plays. Boys are interesting creatures, but they are also creatures of habit. My son adores cars, and majority of the time that is all he plays with all day. In fact, he is crazy about Lightening McQueen, and Dusty Crophopper the plane. In the car, he watches Cars, and since Christmas, he watches Planes daily on our PS3. So we see and hear him playing with his character cars, racing them, and flying his Dusty plane that he received for Christmas.

He also has a ride on Lightening McQueen that he got for his first birthday, and it was love at first sight. He very quickly mastered riding it, and in a short time, learned to drift on it. Yep. Drift. I’m serious. After a year and half of watching him ride this car, his father and I still shake our heads in amazement over his racing skills on it. He is lucky our house has laminate flooring, and luckier still that he now has full access to the main floor. He goes around and around our house, zooming, vrooming, with a running commentary, that the other night I joked we should paint a race track on the floor through the house.

Wow!
Whoa!
Yay!
What’s that?!
There it is!
It goes there!

These are the words I hear when he is successful at completing a puzzle, shape sorter, finds an image in his Look & Find books, or when he plays his apps on my iPad. His sense of accomplishment and joy is infectious, so we cheer along with him, and praise him.

C’mon!
Help!
Please!
Mom!
Thank you!

I hear these all day, and he says them so clearly that lip reading is no longer required. When he needs help with a toy, a movie (Diego is his other obsession), a snack, more milk; this is how he gets my attention, and gets me to come play with him. I only wish he stayed close to the room with our wood stove, but he is so independent that he is happy playing in the two front rooms or watching Diego on his own.

Daddy!

He shouts when he sees his father is home from work and runs to him for a hug. Laughter as his father snuggles him, tickles him, plays with him, chasing him through the house playing hide and seek.

No!
No!
Waaah! As he cries…

These while it happens daily, are shortlived thankfully. Usually occurs when he doesn’t want to go to bed, get his diaper changed, or we tell him NO. Sometimes it’s fake and his father and I have a hard time suppressing our laughter as he covers his eyes and cries. He always gets over it fast thankfully, and soon it turns to:

Snuggles, kisses, and:

Night!

I’ve been taking daily pictures for a 2014 Album of things I am grateful for. This is my daily affirmation of being grateful I can hear these sounds he makes, comprehend these words, and more that is growing daily. I am grateful that the hearing aid and cochlear implant have given me these daily gifts with my toddler and his siblings. Currently we have snow removal happening on my street and I can hear the dump trucks, the bulldozer, the small dozer moving, lifting, breaking the ice, and dumping it all. I hear them idling right now and in the middle of it I am hearing my son babbling and working on his puzzles.

Hearing is taken for granted by many until it is lost. I only had a little to begin with, and I fully appreciate what I can hear around me, even as some sounds annoy others. Sounds enrich our lives, and help us make sense of the world around us. So when you listen to your kids and the sounds around you, take the time appreciate that you can hear them even when they are irritating and annoying.

A Message to the Educator

A friend who is a college professor asked me today what she can do to aid one of her students in her class. This student has a cochlear implant, and as she knew she was limited in her knowledge, she wanted to know what she should be aware of. I am naturally pleased she felt comfortable enough to ask me, and that she recognized there may be things she can do to facilitate her student ‘s success. So until she has a little time to converse with me on this topic, her question has me thinking back to my own experience and what I would recommend for you as the Educator.

My personal experience in high school and university, required me to speak with each one individually, and explain my needs and ask for help. Most were understanding, and most obliged willingly, but there were a few who were very resistant in changing anything to accommodate my needs.

My previous post on Communication Strategies is where one should start, when one has a Deaf or HOH person in their classroom, lecture hall, or seminar group. This information should also be referred to by the Teaching Assistants who often are the main instructors for the smaller class setting.

There are many different classroom settings at this level, lecture halls, smaller rooms for seminars or smaller group classes, and none of which are ideal for the Deaf or HOH student. Acoustics are often an issue, lighting, size of the room or hall, noises from other students, and so on. If it is difficult for the hearing student to hear or follow the lesson, it is even more so for the Deaf or HOH student. I recommend that professors or teachers sit in another lecture or class seminar, and spend some time observing the environment, with and without ear plugs in, to gain an understanding, even if only rudimentary, of how those settings alone impact the success of all their students. Those are things that cannot be changed, but one can at least understand the impact it has on their students.

Every teacher, professor, T.A. Has their own style of teaching, and different subjects definitely impact the methodology as well. Some of the things I am going to suggest is based on my own experience, and should provide a springboard for understanding the needs of your Deaf or HOH student. Most colleges and universities have a Special Needs office that provide advocates, information, equipment, and even photocopies of materials. Utilize that office if available, as that is what they are there for.

1. If your student has not already approached you, arrange a meeting to discuss their concerns, and what their needs are. Quite often they are vocal about exactly what they need, and should be taken at face value. Meet periodically to ensure they don’t need anything else.

2. Be willing to provide copies of lecture notes, or written materials to aid in following the lecture, lesson, or seminar. Even a synopsis is helpful, as it cues the student into what to listen for.

3. Be available for clarification or questions after the class. Especially if there was a large amount of topics covered, which may not have been covered in written materials provided. We all know discussions can go into different tangents, so not everything can be strictly prepared ahead of time.

4. Have fellow students arranged to be paid as note takers, even when the Deaf or HOH student misses a class due to illness. (Usually a Special Needs Coordinator arranges the payment, and equipment needed).

5. If Real Time captioning can be made available, use it.

6. If there is a sign language interpreter, provide a synopsis or lecture notes ahead of time, so they can familiarize themselves with the vocabulary. Work with them on positioning, and pacing of your lesson.

7. If an FM system is required, use it.

8. Try to be aware of lighting, extraneous noise, and reduce frequent movement as much as possible. Speak clearly.

9. If using media such as film or video, try to select those that provide subtitles or captions. This is difficult I know, but if none are available, then allow perhaps a loan of that video to the student to watch on their own with a classmate or interpreter.

10. If using an overhead frequently, or a PowerPoint presentation, be aware that a darkened room makes lip reading difficult. Provide copies if possible, and turn the light on when you speak. Put whatever text you can that is essential into the presentation.

11. For group work, smaller class settings, in addition to the communication strategies previously mentioned, follow up after the class to ensure all went well. Deaf and HOH don’t like to be singled out so usually they will be proactive in these situations with their needs.

12. Allow for different methods of presenting individual assignments, as some may feel self conscious of their speech, or their own communicative strengths. As long as the information and knowledge is shown, it shouldn’t matter how the assignment is presented. Furthermore, quite often one that relies on ASL does not have the same language, vocabulary and understanding of grammar in their writing as a hearing individual. Be understanding when marking written assignments if the information does not make sense to you because of their background.

13. Allow extra time for tests and exams.

14. If using auditory materials in a lab setting, arrange for alternatives or exemptions based on their ability to comprehend (for example a language comprehension tape in French).

15. Instead of using the phone to contact your student, use text, email, or instant messaging. If you can create a forum for your classroom, using an application available on Android or iPhone, or iOS, use that to communicate to all your students the assignments etc. My daughter’s 7th grade teacher established one on (not positive) an app called Educabo…

I probably have not covered every scenario, but I hope at least, I have opened the door for accessibility with that Deaf or HOH student in your class. I also hope that there is a better understanding of the variety of ways that you as the Educator, may accommodate your student, and therefore facilitate their success in your class, and subject. The more accessible you are, the more approachable and positive you are, the greater the chances are that student will be more proactive, and enjoy the class more. I encourage you to seek out your school’s Special Needs office/coordinator, and gain some knowledge that can make you the professor, teacher that all students want to have.

Communication Strategies

Every Deaf or HOH person is different and has different needs and strengths dealing with their communication requirements on a daily basis. The strategies suggested here are not a blanket method for every Deaf or HOH person you will encounter, but they will aid, and facilitate better communication for that person. I am not a therapist, and by no means an learned expert, other than in what I have experienced myself; however what I suggest, holds true for many people, even if they are hearing.

For myself personally, I am a strong lip reader, and have the ability to use logic, common sense and a strong vocabulary to decipher what is being said to me. It is why for so many years I was able to fake it, cope in many social situations, and use the phone reasonably well. I am so strong in the use of my coping mechanisms that many people didn’t realize I had a hearing loss, unless I told them. However, it does not mean I never had conversational mishaps, or felt lost in a group setting, or completely miss an entire conversation, because I did, quite frequently. Not every Deaf or HOH person copes the same way I do, in fact far from it. Every one of us has different backgrounds, different losses, different support systems, and different educational background which all impact our ability to interpret the conversation at hand.

For those of us doing auditory verbal therapy, we are learning to rely on what we actually hear, to interpret the words being spoken without the use of lip reading. As a new C.I. Recipient, this is a new territory for me, but it has given me greater understanding on the mechanics of speech development, speech comprehension, and conversely, conversational requirements and skills.

A Deaf or HOH individual has what is called an Auditory Processing Disorder, simply by having the loss of hearing. However there are hearing people and children that have APD as well and also require communication strategies, because something in their brain is not transmitting information correctly. This is a link to a page that defines and explains APD, and if one Googles the term, you will find many more sites explaining this disorder.

So what kinds of strategies must one use when encountering a Deaf, or HOH individual? It depends on the age of the person because infants, toddlers, and children have different needs that are rapidly changing. Therefore the strategies that I am mentioning, while they can, and should be used with young children, are largely for the individuals over the age of ten, which is the age that I feel Deaf or HOH children are fully capable of being responsible for their own communication needs and requirements. I will elaborate more in a second post on the needs of Deaf and HOH children under the age of ten.

This is not a comprehensive list, so I may add to it as they occur to me over time, but for now:

1. Visibility: this means good lighting, appropriate distance for lip reading, ensuring we have our glasses on or contacts in, not having the sun or a bright light behind you..

2. Lip Reading: speak normally, don’t over enunciate, enunciate properly (no mumbling), face the person, and make sure they are looking at you, if you are a fast speaker, slow down a little, trim the facial hair so we can see your lips (or better yet be clean shaven), keep hands and objects away from the face/mouth as they are very distracting, don’t talk while chewing food or gum. Don’t whisper or speak too loudly, as we are distracted by that, and prefer normal speech volume. Do so if required if needing to be quiet, or in a noisy environment.

3. Body Positioning: position yourself where you can be lipread, heard (within the normal range of spatial proximity, three feet), sit down if needed, do not speak behind the person. In a restaurant, when possible, position yourself that what you say, gets directed to the a Deaf or HOH person, rather than to an empty void. (Not easy, but at least try!)

4. Noise: be aware of background noise and eliminate where possible, by turning down or muting the stereo, TV, or relocating to a quieter setting if possible. If noise cannot be eliminated, be prepared to repeat, either a word or the full sentence. Or better yet, sign, finger spell, or write down what you are trying to say. Speak up if needed.

5. Gesturing & Body Movement: reduce or stop altogether gesturing while talking and stay still if possible, don’t move around while talking because doing so means lip reading is harder and we become distracted by your actions. If you must move around because you are demonstrating something, then be prepared to explain again, or break it down into segments. Keep your head up so that your mouth is visible. Give eye contact.

6. Repeat: repetition is often necessary, when you are asked to, please do not be frustrated, or change the words you used, and do not dumb down or simplify what you are saying, unless it’s asked, or needs to be age appropriate for a child. We will often tell you if it is a word we missed or the whole thing, so repeat back only what we ask for. Speak up if you are a quiet speaker. A note: a single syllable word is harder to lipread and decipher than a multisyllabic word, so if one must change a word, use a multisyllabic one instead.

7. Timing: timing is crucial, and this holds for everyone. If we are actively doing something, either wait until we are finished, or get our attention and ask us to stop if it’s important and we are able to do so. Also give us time to process what has been said, stop periodically to check to see if we have comprehended what you have said.

8. Attention: ensure you have our attention, by making sure we are looking at you and aware that we are being spoken to, tap the person on the shoulder, stand in front, eliminate distractions, and even ask if we are ready, if we have been interrupted from something. Please don’t wave your hand in front of our face, it is rude. Eye contact is essential between both of you.

9. ASL: learn and use ASL if your family member, partner, or friend requires it. We understand if you make mistakes, we will help you learn, and we also understand if you aren’t proficient. The effort, and caring behind it is appreciated. If in a customer service or emergency service field, it is crucial to know at least a rudimentary amount if signs so that you can at least convey something to the individual.

10. Assumptions: do not assume we are following every word, or understood every word simply because we are looking at you, actively participating, saying yes, or responding appropriately. Sometimes we are just guessing or faking it. Don’t assume that because we don’t respond, that we are ignoring you, snubbing you, snobbish, or don’t want to talk to you (although sometimes that is true!). Just because we get part of the conversation does not mean we get it all. Sometimes one word missed derails the rest of the conversation, or we become distracted and miss key elements of the conversation. Ask if we understood, clarify what we think we heard. Most of us do this by habit, but often, we also don’t like to admit when we didn’t understand something.

11. Understand: that like anyone else, if we are ill, tired, distracted by our children or environment, that we are affected by things we cannot always control or eliminate, just like you. If these things affect your own abilities to communicate effectively, then understand it is doubly difficult for us to overcome these as well. No one is always at their best, and that always impacts successful communication. Also understand that sometimes, no matter how hard we try to focus, or participate, the BRAIN will simply shut down and say it has had enough. We will tell you if we are having a bad communication day, and why.

12. Instead of phoning, use text, email, instant messaging, Facebook, etc to contact the Deaf or HOH individual.

13. Provide real time captioning in your schools, work places, and at your events where possible. CART makes this a viable way of ensuring your deaf and HOH students, employees, church members, and community can participate. There are apps in development for real time speech to text use on our phones and smart wristwatches. Iseewhatyousay is one such app available.

Here is an absolute DON’T: if we completely miss part of a conversation, or join in late; PLEASE DO NOT SAY THE FOLLOWING: never mind, it wasn’t/isn’t important, it’s not about you, we’re done talking about it, or other similar and RUDE, DISRESPECTFUL statements. All that does is make us feel left out, unimportant; too much trouble to be worth repeated, or included; and hurts our feelings.

Most of us are active in communicating what our needs are, or what we have missed. It is equally important to listen to what we say, and try to employ those strategies for us. Some of us can hear with our hearing aids, or cochlear implant processors, but it doesn’t mean that we hear like a normal person. We don’t, and never will. If we aren’t wearing our hearing aids, or sound processor, then take additional time and effort to aid us in communicating what you say. Wait for us to put them on, or if we can’t due to an infection, migraine, cold, or they’ve been sent off for repair (not everyone has a backup), or the battery is dead, or it’s malfunctioning suddenly, be extra patient and considerate, because at those times, we are even more at a disadvantage.

Effective communication takes all participants actively working to communicate effectively.

DEAF AND HOH PEOPLE AND CHILDREN HAVE TO DO THEIR PART BY ADVOCATING FOR THEMSELVES AND EDUCATING OTHERS ON WHAT THEY NEED TO COMMUNICATE. WE CANNOT, AND SHOULD NOT, EXPECT HEARING PEOPLE TO UNDERSTAND AND FALL IN LINE JUST BECAUSE WE TELL THEM WE ARE DEAF, BECAUSE THEY DON’T UNDERSTAND WHAT WE NEED. ONLY WE DO.