Parenting A Deaf Child

Finding Out

My husband and I found out that our youngest son was deaf when he was around 3 months old. This news came after he spent a month in the NICU fighting for his life. He had passed the newborn hearing test that was given prior to him leaving the hospital, so when we were told the news, the shock was almost overwhelming.

The first thing that lead us to be concerned was the fact that our son would not turn his head to loud noises. He wouldn't get startled by the barking dog or a large truck that would go by the house. Babies have a natural reflex when they are startled. He never got startled. People could in and out of the door, there could be a lot of commotion, but the noises never seemed to bother him. Even his older brother running and hollering around the house didn't phase him.

At his 3 month check-up we brought our concerns to the doctor. At the time, we didn't actually believe that he was deaf but we felt that something was not quite right. The doctor set up a hearing test with the audiology department at the hospital. We went to the test and after, the doctor met with us to give us the news: Our son had profound bilateral sensorineural hearing loss. That meant that he had profound hearing loss in both ears. The damage was permanent and hearing aids may or may not help.

I didn't know what to do or think once we received the news. How did this happen? Did I do something wrong? Where did we go from here? It seems silly now, but at the time, my biggest worry was that he would never hear the rain or the wind. I don't know why this upset me so much but the thought of him never experiencing a world of sound depressed me beyond belief. The first two weeks after the diagnosis was full of disbelief. We told our family and friends and they were as supportive as anyone could be, but it still didn't stop the pain.

Our whole lives changed with a single medical diagnosis. The news thrusted us into a place that we had never been before and a place that we didn't ever think that we would be. A person doesn't realize all of the things that there are to be grateful for until one of those things is taken away. After something like this all there is are questions and not really any answers.

He is three years old now and the road has been a long and rough one. As parents we have had to learn new skills to be able to teach him new skills. As time passes, I will share this long and rougn road with the readers. Hopefully my story can help inspire others.

Great Books and Movies about Deaf Culture

Inside Deaf Culture
Inside Deaf Culture

In this absorbing story of the changing life of a community, the authors of Deaf in America reveal historical events and forces that have shaped the ways that Deaf people define themselves today. Inside Deaf Culture relates Deaf people's search for a voice of their own, and their proud self-discovery and self-description as a flourishing culture.

 
Deaf in America: Voices from a Culture
Deaf in America: Voices from a Culture

A long, painful experience of hearing intolerance has generally kept Deaf culture fairly closed to outsiders, even sympathetic ones. But now Padden and Humphries...have written a charming small book that invites the rest of us at least part way in...A most welcome addition to that very small shelf of books that truly illuminate the experience of being deaf.

--Beryl Lieff Benderly (Psychology Today )

 
Through Deaf Eyes
Through Deaf Eyes

DVD by PBS about the history of deafness.

 
American Sign Language Everyday Words: Activities & Events
American Sign Language Everyday Words: Activities & Events

This new DVD, American Sign Language Everyday Words: Holidays & Events, is great for everyone. You will learn over 250 everyday vocabulary

words in ASL about 21 major holidays, events and more. Every vocabulary will be open-captioned for convenient learning.

 
Children of a Lesser God
Children of a Lesser God

Mark Medoff's tough play about deafness is sweetened and softened in this 1986 film adaptation directed by Randa Haines (Wrestling Ernest Hemingway). William Hurt plays a teacher newly hired at a school for deaf children, and Marlee Matlin is the deaf and withdrawn janitor who captures his attention. Romantic and heartfelt, the film makes its audience care very much about its two leading characters, and wince when Hurt's well-meaning instructor allows Matlin's handicap to become a problem. Haines develops some interesting visual ideas to underscore the isolation of Matlin's world, particularly a lovely refrain that finds Matlin swimming alone at night. The drama is cut somewhat by the bouncy energy and good humor of Hurt's students. Piper Laurie is very good in a supporting role as Matlin's mother. --Tom Keogh

 

Bilateral Sensorineural Hearing Loss

 

While there are many types of hearing loss and many different causes for hearing loss, our son suffers from bilateral sensorineural hearing loss. This means that both ears had damage to the inner ear and the path that lead from the nerves to the brain. This type of damage is permanent and there is no way to fix the problems.

Bilateral sensorineural hearing loss results in a reduction in sound and the ability to understand speech. The causes of this type of hearing loss ranges from birth injury to exposure to drugs that are harmful to the auditory system. Our son's was due to a combination of Rh Incompatibility disease at birth and the drugs that were used to save his life. I am grateful that he is deaf and not dead!

Some people that have bilateral sensorineural hearing loss do benefit from the use of hearing aids. It does depend on the severity of the loss. Our son has a profound loss, actually we just found out that he has no hearing in his left ear and a slight amount in his right. This severity makes the use of hearing aids a hit or miss process. Right now he uses a lower-power hearing aid that seems to benefit him a little.

The hardest part of this whole process has been accepting it. When we first learned of his hearing loss, I threw myself into research about it so that I could be knowledgeable. We all know that doctors sometimes use big words that we regular folk don't always understand. Our doctor did this from time to time so I would take the time to research it. I also realize now, that I was looking for a way to fix him and take it all way. This was not even a possibility, but in those first few weeks it helped to take my mind off of things and in a way I felt like I was helping him.

I cried. A lot. I was angry a lot too. I probably went through every emotion that a person could. I look back on the experience now and realize that I went through the stages similar to the grief process. In a way, I had to grieve and let go of the child that I thought I was going to have and accept the child that I did have. It was not a quick process and the learning is still taking place. Accepting his hearing loss came about a year and a half after his diagnosis, so when I say it takes time, I mean it takes time.

A diagnosis like this will not kill you, believe me. Even on the days when things are at their worst and you feel like the world is crashing down around you, you will find yourself still standing when the night comes. Fighting another day. When the day of acceptance comes, it feels like a huge weight has just been lifted off of your shoulders and you can conquer anything!


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Comments 19 comments

_cheryl_ profile image

_cheryl_ 6 years ago from California

Such a touching story Christina. It must take strengths beyond all measure to accept a diagnosis as your son's at his young age. But from your writing, I feel that you are dealing with it courageously. I love that you're sharing your story with us. That alone brings me inspiration as a parent, and to many others I'm sure. I very much look forward to following your stories, God Bless!


ChristinaScibona profile image

ChristinaScibona 6 years ago from The Heart of the Finger Lakes Author

Thank you very much for reading my post and being my first fan! It has been a long three years but we are finally getting the hang of things! Thanks again!


dohn121 profile image

dohn121 6 years ago from Hudson Valley, New York

I've never before come across someone that has a child with a hearing impairment as this is the first. I can't imagine how difficult this must be for you and your family, nor will I try to tell you that I understand, because I don't. I will however say that I admire your ability to share this with all of us. I believe that everything does happen for a reason and your son would not have been sent to you if you couldn't take on the responsibility of being a good parent, so hat's off to you. I'm sure your son is in good and loving hands.


Mike Rogers profile image

Mike Rogers 6 years ago

Extremely touching piece. Thanks for sharing it and I am sure it will benefit other parents in many ways.


stars439 profile image

stars439 6 years ago from Louisiana, The Magnolia and Pelican State.

Dear Christina: Everything will be fine. You are a wonderful mom, and I bet your husband is wonderful dad. Many years ago a neurologist told my wife and I that our little girl would become a vegetable. His foolish diagnosis nearly destroyed us.

My father who is now deceased once told me this, " Son, No doctor is God. The baby is intelligent."

I was angry with that doctor for his choice of words.

Our one and only baby girl has never walked in her life, and she can only use one arm, and one hand,and she is blind in one eye, but she talks well, and thinks just fine and has won three beauty contests, and has taken pictures with stars.

That doctor was wrong. Our daughter now 35 years of age has a neurological disorder, however she is beautiful, talks, laughs, is happy, has lots of friends, and is not a vegetable.

Your child is young, probably very beautiful, and only God has all the answers. Time makes a lot of difference in life, and time has made many doctors eat their words.

Only God knows the real answers about anything. Don't worry! Your child is in your good hands , and his father's and in God's. God Bless you.


stars439 profile image

stars439 6 years ago from Louisiana, The Magnolia and Pelican State.

Dear Christina: I forgot to mention this. Our daughter Becky has a God mother in Virginia. Her God mother is very hard of hearing, and wears a hearing aid, and still has difficulty hearing. She speaks well, has a great life, has a beautiful home, is happily married, and is like a secretary for a publisher or publishers. She is my wife's best friend since they were kids in school. She has a great and wonderful life. God Bless You.


habee profile image

habee 6 years ago from Georgia

Very touching. My youngest daughter is/was partially deaf, so I know a little about your situation.


VioletSun profile image

VioletSun 6 years ago from Oregon/ Name: Marie

It must have been hard for my mother too as I am partially deaf in both ears, and no one in my family has hearing handicaps, so I can understand your pain. Its weird a few months ago, I was able to hear the wind when I was outside with my s/o (which caught my attention when I read these words from you) which brought tears to my eyes, what a beautiful sound!

Your son has the potential to do almost anything he wants to be in life; even with our full senses we can all be almost anything anyway, as we all have diverse strengths and weakness. I think of the actress Marlee Matlin when I watched her in "What The Bleep,"she said people felt sorry for her because she is deaf, and she never saw it as a disadvantage, that she feels complete and happy and has done everything she wants in life. She was speaking in the context of how our attitude and belief system creates our personal reality. I loved listening to this! :)

I wrote a hub "Being Hearing Impaired in A Noisy World," that may interest you. I speak two languages and normally.

Hugs to you.


ripplemaker profile image

ripplemaker 6 years ago from Cebu, Philippines

Hi Christina, thank you for sharing your story. It does help parents who are experiencing the same challenges. I believe it also has to do with the fact that it makes you feel you are not alone. I also loved the sharing of the hubbers (posted in the comment box)who talked about being able to live beautifully even with the hearing problem. This gives us a lot of hope and that is a wonderful thing to have.

Congratulations to your Hubnugget Nomination! Blessings to you and your family and most especially to your son! Can you please give him a loving hug from me? :)

To the Hubnuggets voting center, this way please: http://hubpages.com/hubnuggets10/hub/hubnugget-vac...


ChristinaScibona profile image

ChristinaScibona 6 years ago from The Heart of the Finger Lakes Author

VioletSun-

Thank you for your encouraging words. I love to hear stories of inspiration and hope and your story did that for me! Thank you for sharing your story about hearing the wind...it made me smile:)


ChristinaScibona profile image

ChristinaScibona 6 years ago from The Heart of the Finger Lakes Author

Ripplemaker I love to see your comments on my hubs...you always bring me good news :) I must say that you people at hubpages have really shocked me good this time around...I really didn't expect another nomination. Thank you for the great boost and I will give him a hug from you! :)


elayne001 profile image

elayne001 6 years ago from Rocky Mountains

Kudos on your nomination. It is well deserved. I had a niece and a cousin who are totally deaf. My cousin was born that way and she finished college and now teaches deaf children. My niece had tumors that grew and made her deaf. She graduated from high school and now works at a store. Both are very special to us. My granddaughter was born with spina bifida and is partially paralyzed. I know these special spirits are placed in our families to help us learn and to help us grow. God bless.


ChristinaScibona profile image

ChristinaScibona 6 years ago from The Heart of the Finger Lakes Author

Elayne- Thank You for your comment. It means so much when people read and comment on my writing. I once had a boss of mine tell me that I wouldn't have been given such challenges if it was thought I couldn't handle them...I guess they were right!


Money Glitch profile image

Money Glitch 6 years ago from Texas

Hearing that a child is sick is heart-breaking to any parent, I'm sure. As you said so wisely in your hub thank goodness he is alive. And I'm sure that your hub will reach out and touch others who may be enduring similar circumstances. Remember to breathe and take one day at a time on your journey. Congrats on being selected to this week's HubNuggets Wannabe nomination. :)


shazwellyn profile image

shazwellyn 6 years ago from Great Britain

I can not say anymore than your other commenters. Just know that someone is thinking of you:)


Pamela99 profile image

Pamela99 6 years ago from United States

Christina, What a touching story, I wish a cochlear implant were an option. I can surely understand your grief and the major problems you've encountered must be do difficult. Congratulations on your nomination.


LeanMan profile image

LeanMan 6 years ago from At the Gemba

My middle daughter has a severe high frequency hearing loss, she hears most sounds except the higer frequencies. This leads to her often mis-hearing what she has heard and has led to many many problems in school when teachers think she is being a trouble maker, as "she hears me fine" is what they think as she always reacts when they talk to her.

People in general have no idea of the problems faced by hearing impaired children..


Armando Roberson 5 years ago

That was a very concise explanation. Hearing Impairment is an isolating experience as millions of our fellow humans experience some level sof hearing loss everyday. Thanks for bringing this matter to light.


Amy 3 years ago

You will be fine.

I am deaf. I have been married for 6 years. I have two sons age 15 and 13, both can hear. My husband is deaf. My husband and I do work.

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