Breaking the Sound Barrier

Detailing the Road to Better Hearing

Asbestos Awareness Week

This week is Asbestos Awareness Week, and I realize it is an unusual post to make for my blog. However it is an issue that needs bringing up. I have a friend who personally may be experiencing seizures as a result of exposure to asbestos. Others in the United States have experienced cancer and other serious illnesses, so I feel it is important to make note of this week and bring a story to you.

One woman, Heather St. James is making it her mission to spread the word, and here is her story:

Eight years ago, I was diagnosed with mesothelioma; a rare and deadly cancer caused by exposure to asbestos. I had just given birth to our daughter Lily, and was only given 15 months to live. After a life saving surgery that included the removal of my left lung, I made it my life’s mission to educate people about this deadly disease and it’s cause.

Asbestos Awareness Week is April 1-7th 2014. Asbestos has been used for many applications in the past including building materials in homes, office buildings, and naval ships. It is STILL not banned in the United States today.

This year, I am asking bloggers to participate and spread the word about Asbestos Awareness Week by being a Voice for the Victims. You can find my awareness page here: http://www.mesothelioma.com/heather/awareness/

So spread the word please!

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Silver Lining

I’ve written about many of the challenges I face as a deaf parent raising three hearing children. Communication obviously is a challenging aspect particularly in the years from infancy to childhood. Raising hearing children to speak properly and communicate well with their deaf parent(s) takes a bit effort, and support from family members. My children have been well supported in this area, and never needed intervention. My own hyper-awareness of their speech development meant that I was more actively involved in correcting their speech, and now with my toddler, in reinforcing his attempts to say new words.

However, I haven’t written about some of the advantages or positives to being a deaf parent to my hearing children. I am not sure they’d agree there are some advantages, since my deafness has at times created frustration for them. There is always a silver lining in any situation, so certainly there must be a few advantages to being a deaf parent or having a deaf parent?

Silent communication via sign language or lip reading my children across the room has always been a positive aspect. My older two children have always loved being able to sign “I love you” to us, and my daughter definitely likes that her father and I can lipread her from across the room when needed. This is particularly handy when I am not sure I understood something and she can just repeat the words without saying them aloud. Also, I can read their body language and facial expression and gain more information from them that way as well.

For my daughter, it netted her a cell phone at the age of nine, so that she could talk to us via text from her friends’ homes, or when visiting her grandparents. Now, at almost 13, she has an iPhone and is able to talk to all of us via FaceTime, texts, phone calls to her hearing friends and relatives. Lucky girl isn’t she? I’ll admit though, her father and I needed to be able to talk to her, and text was the easiest way rather than through an intermediary. So our daughter having a cell phone benefitted us greatly.

Other positives is that I am often able to get seats closer to the stage so I can lipread at their school presentations at Christmas, awards ceremonies and other similar events. They’re able to see that I am there rather than searching the auditorium for me. It also means that they also get better seats or positioning when we participate in community events where I am able to get us closer. My parents have at times benefitted from that as well, on our travels, while visiting museums, on walking tours, and going to plays or other presentations.

As a parent, the biggest positive I have found is that my older two children became strong readers at an early age. Their constant exposure to closed captioning or subtitles allowed them consistent exposure to text and audio, outside of the bedtime reading sessions or their reading homework.
My daughter was five when she proved that this exposure to closed captioning benefits hearing children as well as deaf children.

She was watching a show one afternoon, and as I was folding laundry I was not particularly paying much attention to the show. She turned to me and said, “the words don’t match the show”. Surprised, I stopped what I was doing and watched with her for a few minutes and sure enough, she was correct. The captions were for an entirely different episode. Then I quickly realized that something amazing had occurred. We had only been actively teaching her to read for about a year, and she was far beyond what we had thought she was at. Her father and I were completely stunned, and naturally proud. Her brother subsequently showed that he as well had benefitted, as like his sister, he began reading chapter books at age 6.5. I have full expectations that my youngest will also do the same.

When my daughter and I recently went to a movie, I used a closed captioning device for the first time. As it turned out, she ended up looking at it as much, if not more than I was through the movie. She commented afterwards it wasn’t the best at captioning the movie, but that it certainly helped her at times follow the actors. She is gaining an understanding of how technology benefits us or doesn’t in some cases.

My daughter has become sensitive to the needs of her classmates who have disabilities, and an awareness of what is right. Her experiences with her father and I, and seeing some of our challenges we face has made her into a better person, and someone who is always looking out for others. I hope my sons will also demonstrate this understanding as they get older.

Clearly it isn’t easy to finding the positives in being a deaf parent, and I am resolved to find more as I raise my children to adulthood and beyond. I hope that they will see that the challenges I have faced will inspire them to persevere through their own challenges. Being a parent is a roller coaster of ups and downs for anyone. Being a deaf parent has it’s own issues. Finding the silver lining in being a deaf parent is absolutely important in being a successful deaf parent and raising my children to being strong, successful, independent adults.

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Path to Employment

I’ve been struggling to find work for eighteen months now. This is the longest I’ve ever been unemployed, much less frustrated by the current job market. For the first time in my life I’m seeking help from ODSP for employment income support as well as help in getting a job. I’ve never used government services other than when I was in school, and on maternity leave, or in purchasing hearing aids. This is the first time it will be an intensive process to gain employment or start my own business.

I now have to decide which route to go. Do I want to continue to regain entry into the job market? Or do I want to become self employed and create my own business? If I create my own business, then what do I area of the market do I try to find my niche in? I am faced with difficult decisions. Including whether to return to school, yet again.

My deafness creates some difficulties in finding appropriate employment. There are certain areas of employment that will never be a good fit for me. My self esteem and confidence has taken a beating in the past two years. I still have much progress to make with my cochlear implant, not the least of which is consistently understanding conversations, as well as the use of the phone.

I have mixed feelings about the process I am about to embark on. I feel I shouldn’t need to be going this route. I feel saddened it was necessary. I feel hopeful about it helping me to become self sufficient financially. At the same time, I am doubtful because the current job market is difficult for everyone. Being gainfully employed is so important to ones self esteem and confidence.

The state of today’s job market makes me worry for my children’s futures in becoming self sufficient. It makes me worry about our ability to provide for them and our retirement. It makes me realize how important it is for businesses to create employment, and local, provincial or federal governments to provide incentives and help. Without momentum, without incentives, the unemployment rates will rise, the homeless rates will rise, and thus a domino effect begins.

Our future relies on us all.

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Defining Moment

I’ve had many moments in my life that defined me. It is hard to narrow down to any one specific event that shaped who I am today. Each moment can shape your life for the short term, or the long term. They can have positive or negative impacts on your life as well.

These moments can be:
First date
A First Kiss
A Marriage Proposal
Your Wedding Day
Birth of a Child
Winning the Lottery
First Job
Loss of a Sibling
Loss of a Parent
Loss of a Child
Loss of a Spouse
Hitting Rock Bottom (drugs or alcoholism)
Nearly Dying
Losing your Hearing, Sight, or Limb
Completing a Marathon
Meeting a Celebrity
Participating in the Olympics
Cancer Diagnosis

So many events on a personal and wide scale (like the Twin Towers falling, a Tsunami, Hurricane Katrina) that can shape a decision in your life and impact you in a variety of ways. What you do with those moments define who you are, and the person you become. You ultimately have the choice to let these moments shape you negatively or positively.

I entered a contest about a Defining Moment in my life, and I chose to write about the day I became motherless while pregnant with my youngest.

Here is the link to the story titled Last Breath:

http://definingmoments.cbc.ca/mediadetail/18358053-Last%20Breath?offset=62

Please click on the link, and go vote. Contest ends Wednesday February 26, 2014.

This blog, and the writing contests I have begun to enter, may well define me as a writer and the type of author I may become. With support and encouragement from my friends, family, and readers, I hope this will be the start of a new path in my life.

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An Unexpected Reaction

So the other day my husband was telling me some details of an upcoming work assignment. He works as an industrial maintenance mechanic millwright and his job requires travel to job sites. Usually he is home the same day, but there have been the odd occasion when he is gone for a night or two.

I never like when he is away because I don’t sleep well when he isn’t beside me, even when he is home and he crashes on the couch in the living room. Most of the time I can handle the night or two, even though I cannot hear very much while I sleep. I only have a small amount of low frequency hearing in the left ear, and none in the implanted right ear. Needless to say it makes me feel vulnerable at night.

This time, he is going to be away for days at a time and home on weekends for a period of at least six months. As he was telling me this, despite already knowing the project was coming up, I began to experience anxiety and panic. I had one of my toddler’s Smurf toys from McDs in my hands and was twisting it around over and over. I was also on the verge of tears, which caught me off guard. I knew then this was a different reaction for me than I’d had had before. I have lived on my own before, and the ex-husband had also been away after our daughter was born for several months, but I hadn’t had these feelings during those times.

So why was I reacting so viscerally this time? The surgery for the cochlear implant destroyed any residual hearing I had had in my right ear, and that became the trigger for my anxiety and panic. I also had had an alert system that was set up for alerting me to my daughter’s cries, or the doorbell. I no longer have that system, as I had left it with the ex who is totally deaf when our marriage ended as he required it more than I did at the time. It was ok while it was just me in my new home as my neighbours had a key for emergencies; and when I had my two children with me, my daughter was old enough to alert me if needed.

I haven’t replaced the alert system for several reasons. The major one is the cost, as the central component itself is at least $200, and then adding the accessories increases that cost, therefore, it can cost me up to $1000 depending on which system and accessories I chose. I also, in the past four years that I have been with my husband, I no longer felt a need for an alert system at night because he is hearing and I could rely on him to wake me if needed.

When he gained this job, we had known that at some point I’d be facing a period of time without him here. We didn’t prepare for it largely because I hadn’t felt that vulnerable or concerned until now. Having less hearing than I did three years ago is continually bringing up new challenges and emotions that I hadn’t experienced before.

So now what do I do? My plan is to try to borrow a system and until then, or if it isn’t possible to borrow one, sleep with my hearing aid on, so I can hear our son, and any noise during the night. Our neighbour will be made aware of the situation so he can alert me or take action if god forbid, something does occur. I have worked through the initial anxiety and panic, and I know we will be ok. Being deaf makes life challenging but nothing is insurmountable.

On an aside, I entered a little writing contest, in the Canada Writes Defining Moments contest, click here, to read my story of the day I became motherless: Last Breath. Please read and vote for me, the contest ends February 23rd.

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Canada Writes Defining Moments Contest

So I entered a little contest, and have eight days to garner enough votes to make the top 12 for judges to review. This is a shameless promotion of my entry. Please go and vote, share the link, and you can even go from different computers, and tablets and vote.

Here is the link:

Last Breath

The story is about the day my mother passed, and I was by her side in the hospital. It was a defining moment for me in my life, as I became motherless while pregnant with my last baby. So please go vote, and share the page.

Thank you to my followers for the support.

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Love is In The Air

Tomorrow is Valentines’s Day. I usually like to celebrate it with a night out, dinner, a movie, you know, quality time with the man I love away from the house and sans kids. This year though, as in the past few years, we are unable to do so. Money is tight, but it doesn’t mean there aren’t ways to show that we love each other.

How? You ask… Simple.. From the heart…

Make a special dinner with candlelight and wine
Do chores you normally wouldn’t help with
Make a coupon book for cute favours or romantic gestures (not that this should be necessary, so make them fun and unique)
Play in the snow: snowball fight, afternoon of sledding followed by hot chocolate and a warm fire
Write a poem or letter
Stick love notes through the house
Cuddle and watch chick flicks with popcorn
Eskimo kiss
Massages and foot rubs
Reminisce about your first date, the night you proposed or married
Watch your wedding video or look at photos of your years together
Go for a walk and hold hands
Go skating
Play video games, a board game, darts or pool if you have these things in the house

See… Lots of ideas.. What matters is the thought and meaning behind the gesture or activity. Life is too short not to take a moment and remind each other you love them. It doesn’t take much, so Valentines Day should be celebrated every day of the year.

Happy Valentines Day, and show your loved one a super cool, silent way you love them by signing:

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Ear Infections

Yikes. I thought I was done having these infections. Nope… I have swelling in both ear canals. How I do not know… I caught it early enough that the antibiotics are working quickly, and I hope that will be the end of it. However it brought firth the reality that I can never treat it lightly, and must go for treatment as soon as possible. With having a cochlear implant now, it means that if left untreated, it can lead to meningitis, despite having the vaccine. Definitely not worth the risk in my opinion.

I remember having so many infections as a kid. They were painful, the medicines were awful, but the worst part, was the inability to hear because I could not wear the hearing aids until the infections were gone. I cannot tell you how many times I had them back to back, or in both ears. School was a misery during those occasions as trying to follow my teacher, or my classmates was difficult, as lip reading wasn’t enough despite how strong I was.

I had tubes three times, apparently by the time I was seven. I only recall the one surgery and being in the hospital. I recall being wheeled away from mom to the operating room, the crib I was in, the doctors with their masks, the prick of the needle on my hand and being told to count to ten. I was out so quickly that the next memory was of waking in my room with mom beside me. I am not sure I even understood why I was there or what happened at the time. I have pictures of the flowers sent to me by a friend of my mother’s.

As a parent I don’t take these lightly when my children get them. I am mindful of the older two’s father’s history with ear infections and his resulting loss of hearing. My oldest had tubes and her adenoids removed, my middle son also did, at age one, and a second set of tubes. He still gets ear infections, while she does not. My youngest, so far, no tubes, but two ear infections after he turned one. He has been fine since thankfully. It’s scary putting your child under general anesthesia for any surgery, but for us, our biggest worry was whether they would be in that 1% with complications as a result. Thankfully both are fine.

So as I give myself the drops, swallow the large pills, I am mindful that I not only need to follow treatment correctly, but alert my surgeon, and watch for any complications near the implant site. It isn’t that simple anymore.

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Progress Report

I’ve been doing auditory verbal therapy since October, however I had been forced due to illness and bad weather conditions, plus holiday closures, to not travel for my sessions for the past month and half. So what did I do to keep things going?

It wasn’t easy, headaches and illness made me disinclined to wear the processor. But when I did, I continued working on my iPad on the Auditory Verbal Therapy app, Hear Coach, Bitsboard Pro, AB’s ABLE app, along with a few preschool listening apps. I also spent time listening to music. There were also times when I watched movies without captions, on CinemaNow (on the PS3), which made me focus on the dialogue.

My coach though, has been too tired most nights to do his part when our son was in bed and finally asleep (usually after ten p.m.). Incredibly though, our son has filled in the gaps. Part of the AVT training is training the brain to listen for sounds, so by listening to our toddler, and trying to understand him, I was actually getting coaching from him. I’ve picked up on his new words, his new attempts, and our nap and bedtimes focus a lot on vocabulary with his books. I’m trying to teach him the word mime right now and it’s funny to see and hear him say mineinstead.

So when I finally went back last week for a session with a friend along for the ride, I felt guilty that the practice had been so sporadic, that my use of the processor was minimal. Despite that though, I was still getting 100% on the review of what we had been working on, and my biggest issue, as my friend noticed, was second guessing my first instincts the more we practiced. It was amazing to me that she picked up on that because we’ve only known each other about three years or so I think, and while she knew me fairly well, we spend more time chatting online than in person.

My friend came away with a better understanding not only of how things are for me, but the work it takes for me to understand speech and the sounds around me. She also began to understand why I seemed so antisocial at times at the gatherings we’ve attended. A side benefit for her as a parent, she gained a better understanding of how hard it is for our children to develop speech.

So after observing for awhile, she willingly participated in a couple of exercises with me. One was a themed phone exercise of scheduling an appointment to see a professor regarding an essay grade. She went into another office and we used the office phones to do the exercise, and we both had an “agenda” to refer to. Generally with my hearing aid, these phones aren’t good enough for me to use as they are the older models. However, with the cochlear implant, I’ve done these exercises with my therapist, daughter and now my friend and each time, I’ve managed to get about 97-99% of the conversation. Granted knowing the context makes a huge difference, but so does knowing the person’s voice and speech patterns. I had never held a phone conversation with my friend, so this was our first one. Not to toot my own horn or sound too braggy, but I must, because there was only onesentence she had to help me work through and decipher. Needless to say, I was pretty pleased when she said I blew her away.

During the drive there and back we delved into a lot of the issues I have, and my experiences. We talked about what I’ve learned in the past few months, as well as some of my posts and my frustrations with some of my friends about their view of me. She said that more of my friends should come and participate at my sessions because it would illuminate the issues better, and perhaps dispel some of the misperceptions people had of me.

For me, I went home happy that despite not really working hard in the last month, I still made progress, and am now starting to pick up other softer sounds of speech, like p, b, ch, and blends. It made me realize just how much my toddler is actually helping me, because ironically, he is trying to say much of the same speech sounds I am trying to learn to hear. Funny where you find a coach in the most unexpected of ways, and I certainly never anticipated how much coaching I would be getting from my two and half year old. Timing certainly is everything, and I think starting the AVT when I did, turned out to be perfect timing because that’s when his own speech started to explode.

So for those of you newly activated, remember to look around and realize where your training is coming from in addition to the active work listening to audiobooks, or the various apps, sites we have available to us to use. Realize that in listening to music and familiar songs,in watching television and movies, with or without captions, in listening to our children or grandchildren, that we are actually learning to actively listen on a daily basis to the world around us.

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Importance of Role Models for Deaf and HOH Children

On February 2, 2014 Derek Coleman made history as the first Deaf NFL player to win a Super Bowl. He is a running back on the Seattle Seahawks, and made the first tackle in the first five minutes of the game. He isn’t the first Deaf NFL player, as Kenny Walker was the second deaf NFL player, who played for the Denver Broncos. There are others, but Derek Coleman is the most notable, for his Duracell commercial, and his “No Excuses” mantra, of not letting anything get in the way of one’s dreams.

Just like any child, the Deaf or HOH child needs to see visible role models, whether they are celebrities, sports stars, or within their own communities that are also Deaf or HOH. All children need someone to look up to, to inspire them, to show that one can do anything if they put their minds to it, even if it’s nothing more than becoming a doctor, a teacher, a news anchor or an actor. Deaf and HOH children in particular need to be exposed to these role models, read about others in history like Helen Keller or Beethoven. They also need to be involved in the Deaf community and see role models up close as part of their daily lives.

There is a young woman, who was deafened late in life, who is presently preparing to compete in the 2014 Miss Canada pageant. Her name is Shayla Selma Sabbagh and her profile will be up on http://missuniversecanada.ca/ in a couple of months. In the group we participate in on Facebook, she was asked what message she had for the judges, and this is her answer:

I would like to take this opportunity to educate the judges and anybody watching the pageant and not overwhelm them. I think it is important to give simple straightforward facts and issues we face as a community. I think it is important to tell them there are over three million Deaf/Hard of Hearing Canadians and I think equal access to communication is important. I strongly encourage Canada to implement VRS for anybody living with a hearing loss. I hope to explain some of the myths that plague our community, such as “All deaf people can read lips 100%”. I hope to encourage people to learn sign language and show how beautiful a language it is.

It is quite the goal, but it is important to note that she also wants to be

“an inspiration to young Deaf and HOH women who have been underestimated because of their hearing loss, and to show them they are capable of achieving their dreams.”

Parents need to expose their Deaf or HOH children to role models, and involve them in the local community to meet other Deaf or HOH individuals, to show that any goal or dream is reachable. Without this kind of exposure and encouragement, many Deaf and HOH children may not achieve their dreams. It is important to show them ways of overcoming their limitations and moving past any roadblocks others may put in front of them.

Derek Coleman is the perfect example of a Deaf child coming from a family with parents who refuted all the naysayers, told him to ignore them, and pushed him to keep striving for his goals. He has for the past few weeks been quoted on how important it is to ignore the naysayers, to work hard, to never give up on achieving your dreams. His Duracell commercial has been shared on YouTube and Facebook, and in it he speaks of his parents, the bullies, the naysayers.

Public figures like Marlee Matlin, Garth Brooks, Rob Lowe and Katie LeClerc (Switched At Birth star) need to use their status to talk about their experiences, to highlight the issues for the Deaf and HOH communities, and to raise awareness for others. It isn’t enough to have it randomly highlighted in People magazine. They can help raise the visibility of the Deaf and HOH community, by speaking up, and showing that even losing your hearing later in life, isn’t insurmountable. There is a need for better funding and supports to be made available to the Deaf community, towards employment, the purchase of assistive devices, and hearing aids. Those with the ability to raise that awareness at the local levels should also speak up, and get involved in increasing awareness. The Deaf and HOH will not become more visible without these people becoming active and vocal.

I am just a Canadian mom of three, in a little village in South Eastern Ontario, writing a blog about my experiences, and my journey with the cochlear implant. Yet, in doing so I am also increasing awareness when I write about various topics related to the lives of the Deaf and HOH. I am not a public figure, however I have hopes that I have been making an impact on others, by allowing you the public, the blog readers, the curious, Deaf, HOH, or hearing to see into my life, and my thoughts, and emotions. If I can inspire just one child to reach for the stars, then I have done my job. If I can offer hope and information to parents as they find their way through their child’s diagnosis, then I have helped one family learn to support that child.

All children need to see that with hard work, a strong will, and a supportive environment, that they can achieve their goals. That reaching for the stars isn’t an impossible dream.

Notable Deaf People and HOH (not a comprehensive list)

Linda Bove – Linda on Sesame Street, 30 years, longest running deaf actress
Marlee Matlin- deaf actress known for Children of a Lesser God
Kenny Walker – retired, Denver Broncos NFL Player
Heather Whitestone – first deaf Miss America 1995
Garth Brooks – country singer (progressive loss)
Halle Berry – actress ( unilateral loss)
Rob Lowe – actor (deaf in right ear)
Helen Keller – deaf/blind woman and activist

Links:

https://www.google.ca/search?q=derek+coleman&ie=UTF-8&oe=UTF-8&hl=en&client=safari

http://en.wikipedia.org/wiki/List_of_deaf_people

http://www.start-american-sign-language.com/famous-deaf-people.html

http://www.deaflinx.com/WorldWide/canada.html

http://www.hearinglikeme.com/living/workat-play/no-excuses

If you would like to use my services as a motivational speaker, or to provide information to your company or organization, click here:

http://breakingsoundbarrier.wordpress.com/breaking-the-sound-barrier-consulting/

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