My daughter's view of mom's CIs.

From the mouth of my child.


I asked my wonderful and talented daughter to write a posting for today blog. She said, mom what do I write. I told her to choose. Let me prepare you that my smart, silly daughter has a mind of her own. She decided to make it a question and answer posting.





Topic: What is it like to have a mom who has Cochlear Implants?





Mom: What do you think is the biggest change in your mom since she got Cochlear Implants?


Jenna: She can hear me when I tell her important things. I don't have to give her back massueges because she does not get migraines anymore.





Mom: What new things can you and your mom do now?


Jenna: Listen to music together and watch more television together. She can hear the drive thru window, so I don't have to repeat what they say.





Mom: Do you get embrassed by the looks of the implant?


Jenna: No, it does not even matter. I can't even see them.





Mom: How has the implants gotten your dad in trouble?


Jenna: Mom can hear the silly things he said. Like when dad said mommy can hear a heartbeat from a frog in Africa. He also makes silly comments all the time.





Mom: What is the bad thing about mom's cochlear implants?


Jenna: When you take them off you can't hear me. Sometimes you get a headache.





Mom: What do you think of mom singing and listening to the ipod all the time?


Jenna: It is silly. My mom will never win on American Idol.





Mom: What would you do if you had cochlear implants?


Jenna: The same things!





Mom: Thank you Jenna for this wonderful interview.


Jenna: Thank you mom, cochlear implants can be good or bad, it is your choice.

So that is what my daughter thinks of my implants. To her it is no big deal, just part of me. I am very proud to have a daughter that loves me for me and ditto on my side.

**Side note - I found my audiogram from post activitation. I will post it so others can see the type of change it has made for me. I am looking for a t-shirt for Jenna on cochlear implant awareness. She wants one to that said "My mom wears Cochlear Implants!" **

Jenna is the one in the hat, that is my fantastic niece Paisley in pink.

I seek answers!

I have not posted in a week. I spent the last week reading blogs, reading postings on alldeaf, and researching the internet. I spent a lot of time just reflecting. How did I get to this point? What happen that I was clueless for the past 39 years? Wow, when did my choice for implants and the choice of parents upset a whole community. Also what is my place in the Deaf Community? What purpose do I serve? How can I bridge parents of CI children, Deaf, HOH, and CI adults?

Then I realized I don't have answers, only more questions?

So here is my choice, I am going to keep on blogging. I am going to try to show the reflection of a positive experience with Cochlear Implants. I will defend any person I feel is treated against the golden rule "Treat others the way you want to be treated." I will show my support for others within my Community and find a way to enrich the community with my experiences.

So in saying that I have one more thing to say tonight - Karen, I am proud of you! I don't know if would have had your courage. I will find my strenghts in yours. It is a positive change you are making. ----Valerie

Who is that child?

Who is that child? . . . . Who that child? . . . . Who child?



I know what you thought, I can't believe you thought that?

No way . . . This was my first sign language sentence I learned last night.



I can't believe you thought that!


Okay back to the topic. I started my first ASL class last night. It is offered by the local church with three teachers. Two are deaf and one is an interpreter. One word - difficult! I have spent the majority of my life reading lips. I can read lips and understand most of everything said. They had to turn off the voices and not move lips when signing. Now I had to work. Since I know my abc's and numbers, I got to move to group 2. :) We started on chapter 2 and 3. We practiced family names and pronouns. We had to sign out three sentences. So my sentence was ,Who is the child? I did it!!!!


Now I have to practice chapter 4. So I am putting 20 minutes a night to practice.


My husband is not very happy about me taking sign language course. He watch for 20 years as my hearing started to decline. He cried with me as I lost my interest in music and movies. He made journeys and trips to see what was happening to me. He held me and yelled(can't whisper anymore) I'll learn ASL with you. I always said no, I'm fine, we will make it. So now that I have hearing, alot of hearing, wait more hearing then I ever had, why do I want to hear ASL. I told him that is the point.

*I don't have to learn it to survive. I can learn it to enrich. I can make the choice without the choice being made for me. And plus I want to view the vloggers and understand.

So now he is accepting it better. It is hard to watch someone you love not understanding your choices. My wonderful hubby is also dealing with some hearing loss from the military. All the weapons caused some problems. I see it, it is very small, but there. The good news it is the same and has not progressed from 14 years ago.

Now music, music, music

I have made so much progress with music. I added three new songs. "Imagine" "Fancy" and "Alone." I am picking up most of the words from Imagine and Alone. Fancy is a tough nut to crack. The only words I am really getting is poor white trash!(my mom's favorite words growing up :)). Now for the top of Valerie's music chart is .........drumroll.........(cough)......

EVERYONE WANTS TO RULE THE WORLD? by Tears for Fears
Topping the chart at 227 times
Waiting for something, anything to take its place.
I'm begging, no my husband is really begging and my daughter is crying for something from the 80's and 90's with the same beat.
Please.....
Valerie

First ASL Class

I signed up today for ASL class. Several years ago I took a beginners class, but since I don't use it everyday I lost most of it. My nine year old daughter and I will start class on Wednesday night. I am very excited.

I would never had been able to make this choice without reading the positive blogs and viewing the beautiful vlogs. Not only am I learning more about Deaf Culture, my hearing daughter is learning positive things as well. What makes this a positive experience is I don't feel I am forced to choice ASL to be a part of the Deaf Community, I felt accepted for me. So thank you DeafRead and all the bloggers and vloggers for welcoming me into the community. I hope you will see me not just an oral deaf adult, but as someone who is proud to be a Bilateral Cochlear Implant Deaf Adult.

Valerie

A CI break!

After almost 6 months of Cochlear Implants, I decided to give myself a CI break today. A do not put on, do not use, do not look at, do not view break today. So how was my day?

Quiet, peaceful, lonely, and a headache

I usually get up in the morning and put on my cochlear implants, so I can listen to my ipod. With the break today, no music. I usually get to sit down with my husband and enjoy a quiet conversation over breakfast. It was quiet, I had to lipread which gave me a headache. I usually sit and play games with Jenna and just talk about our week. I got too frustrated with her to try because of all the activity with the dog and mess in her room, plus I still had a headache. On Sunday it is football time. I love to watch any game any team(if Tennessee is not playing). I can follow along without the caption. Today, I had to depend on the caption and missed the field noise. I walked away from the game. Sunday is the reward day at our house, so Jenna and I usually go out for ice cream or a treat. Today we went to Dairy Queen. I could not go through the drive through. We went inside and I had to depend on Jenna. I must have scared the cashier, I was confused with what was going on with there. Plus I still had a headache. What did I learn today.

1. I only get headaches when I don't wear my cochlear implants.

2. Everyone needs a day off, even me from my implants.

3. I enjoy sound. I like the noise. It is not just the conversation, but the background noise. The dryer going off, the timer in the kitchen. Just noise.

4. I missed the music.

5. My life has changed so much in 6 months. I forgot how I spent 36 years like this. I hope each day is better and better.

I still did not put in my CIs today. I learned so much from this and maybe in 6 more months I will do it again.

A little background info. I have had horrible migraines for most of my life. Before CI surgery I was taking neurotin 300mg 2 times and day and 600mg at night. I also took maxalt for the migraines and naproxen 2 times a day. Since surgery I have been taken off my meds completely. I have not had a "real" migraine since July 19th, 2007. The headache today is the closest I have had to a migraine. My doctor and I believe my hearing loss and hearing aid wearing caused my migraines. CIs do not.

**That is my wonderful daughter in the picture.**

Diversity or Uniformity

I was involve with a debate on Cochlear Implants for children and adults. I respect others opionions and experiences. I have had a positive experience with my CIs. I love it. I can't wait to put them on in the morning. They empower me!

I feel very strongly that in order for the Deaf Community to grow, they need to celebrate its diversity.

I am not putting the person's name, but this discussion is on alldeaf
[QUOTE=person;900330]wow, all of you were here until one o clock a.m. to debate. :D It seems forever to sit on the chair and drink bunches of coffee cups to debate until we find fact the answer to bring it up to Washington, DC to send all the letters to the congressmen and FDA. ;)
We should work in the White House.[/QUOTE]


We will never work in the White house, why this is the same adminstration that also believes that students with disabilities and ELL should be 100% proficient on state testing . (my opinion)


The problem is there is no answer - we forget to take into account that every child and adult is different. We can't give a uniform policy. I'm oral and love it. Your ASL and love it. I am against being told I should have learned ASL to function. Your against being told you must be oral. I would never be able to put my child in a residental school. Also not all children are visual learners. Some are auditory(me) and Kinesthetic or even tactile. We have to take into account that not all children or adults will fit the in one group.


So what I see in this forum is instead of working together we isolate and form groups the anti and for. Instead of empowering parents and adults in choices and resources. We should never force people to pick sides. They should be able to have the best of both sides. If they make a choice for CIs then they should be able to be welcomed and encouraged. I kept seeing medical professionals bashed. My doctors and audiologicst have been the best. Even back to the ones I had in college.


Instead of celebrating our diversity, we encourage uniformity.

My dream is for my child to make a positive impact on society.

Why I Wear CIs - Val's top ten

Why I get up each morning and wear my Cochlear Implants.

10. I have to have something to stick to the magnets, or else I stick to the metal doors at school.

9.  So I can listen to "Everyone What to Rule the World" for 200 times, and not one can stop me. Except my singing, that is just plain scary.

8.  To have a chalkboard/white board moment. and of course squeaky sneakers moment!

7.  Now I can hear the phone ring, and answer it just to say I am deaf and don't talk on the phone. At least I hear the ringing!

6.  CIs allow me to do the one thing I love more than anything - Teach. I enjoy the interaction with my students and that I can enjoy it without the stress placed on hearing. 

5.  Being able to follow a conversation without asking others to repeat themselves. Also being able to contribute to the conversation without repeating other comments by people. 

4. The ability to enjoy my daughter's dance class. To hear the music play and how the dance goes in rhythm to the music.

3. To hear the sirens before I see the lights. 

2. To enjoy a nice evening with my husband without him having to repeat himself. 

1.  So I can hear my daughter say, "Mommy, Let me tell you something." for the million and one time in a day!  I never get tired of hearing her voice!

One reason I am so thankful to take off my Cochlear Implants at night.

1. So I don't have to hear my husband snore!!!!!!

Handicapped or Ability

This is from an imperfect memory, from a very imperfect daughter.



"I can raise you either handicap or with a disability using your ability!"

"Your not handicapped, you just can't hear well, if you want, you can do anything you want."





After I had surgery for bilateral Cochlear Implants, I asked mom questions.

*Why did you raise me oral deaf?

*Why didn't I learn ASL(American Sign Language)?

*Would you implant me if I qualified, when I was younger?

*Why were you so hard on me?



Mom's answer soon.

I am so blessed with a fantastic mother(dad did not forget you - you are great too!). My parents tried for 7 years to get hearing aids for me. The doctors and audiologist did not believe that I could benefit from them. In the 70's, technology was not where it is today. She raised me Oral Hard of Hearing. That was her choice for me. She would sit and teach me how to pronounce words. She found I learned it better by writing it down. So I wrote my spelling words 10 times each every night and in the morning before a spelling test. She told me, you do what you have to do to be successful. She would read with me. She well was just a mom, doing what a mom does - love and accept her child. Mom tried to find anyone who would at least try to fit me with hearing aids. Finally when I was in 4Th grade, I got my first Bel tones. That did not stop her!



With each event in my life, mom was there, pushing and pulling at me. With each success and failure, she pushed me harder. I remember the day I was found out I was graduating 5th in my high school class. I ran to the office by my English class to call. We both cried. I told her it was because she pushed me and would not allow me to be handicap. She would not allow me to use my hearing loss to get away with a lack of education.



As my hearing has decreased over the years to the point in which I am deaf and making a choice to get cochlear implants, I asked my mom what I should do. She said, Valerie, you do what makes you happy and what will allow you to live the life you want. She would accept me either decision, but not failure or giving up. That allowed me to reflect on why I want Cochlear Implants.



Now back to the questions:

*She raised me Oral Deaf because she felt she was making the best choice for me. Not the doctors, audiologist or teachers. She felt it was the best choice for the type of child I was.

*We lived in a small town, there were not the resources around. It was not as if she choose not to learn sign language, it was that it was not around. There were not classes in our town. If there were then we would have taken it if I wanted too. As I got older, I was too busy doing my high school stuff, and felt I did not need ASL. She wants me to learn ASL now, that way I have the resources I need.

*She said she would have implanted me earlier. She would have made the decision for cochlear implant, if I qualified for them. She sees the positive results and wished I had the chance earlier in life.

*Mom said she was hard on me because that is what parents do. She would not allow me to use my hearing as an excuse. She expected a lot from me. She saw my ability where others saw my inability.

So thanks mom (dad and family) from your imperfect daughter for giving me a life rich in love, education, family and of course sound.

I see evidence of different type of childhoods, the good, the bad, and the ugly. Each of us is a reflection of our own childhood and experiences. Sometimes they blind us from seeing that others are making different choices. Instead of accepting our differences, we try to make others understand and change their choices. I can see both sides, just the one thing I don't see is this - how can others judge families for cochlear implants? We don't need to be four separate communities - hearing, Deaf, Cochlear Implant, and Hard of hearing. We need to be one community that does not exclude anyone. We should provide love to all,understand and acceptable, education that does not discriminate, knowledge on all types of communications, and strengths to make a choice for your child or self without fear of being excluded.

I am proud to say I am part of a community that accepts me for who I am, a deaf individual who has bilateral cochlear implant, this community is one I surround myself with. They include all types of people - hearing, deaf, CIs, and hard of hearing.

That is my community - what is yours?

Why I Can't Stop The Music!

I can't pin point when the music stopped for me, I just know for the last 20 years I lost the music. I lost the magic of instruments and the glory of voices. I lost the magic of how music just made me feel just so happy(need a new word).

Fast forward..................

I found it - a week after activation. Of course it sounded terrible, just plain horrible. :( I was determined to find it again and make it better than before. So I took my husband's ipod video and set out to learn music again. It started with one song, "Little Jeanine" by Elton John. I pulled the lyrics up on the computer and sat and sang to the music. I listened to the this song, oh 30 to 60 times in one day. I kept it up until I understood the words and could pick up the piano. Oh how wonderful. Then slowly each day I added another song until my library is now 70. (thank you Minglewood for itune cards)

Now my latest obsession is the song "Everyone wants to rule the world" by Tears for Fears. I keep listening to it over and over and over and over again. I can't crack its code. I look at the lyrics, but somewhere in the middle I get lost. I also am overwhelmed by the fantastic instruments - the piano, the guitar, and the drums. Just something makes me listen around 70 times just yesterday. My husband who can hear the song through the ear buds, and I drove him completely crazy. Not a little, but the kind that he had ask me to leave the room so he could have some peace. Me - I just enjoyed another couple hours listening to the same song. I even had to listen one more time this morning walking to the office to go to my mailbox. And of course I made Vanessa and the kids listen to it again on the way home. So I need some new songs, please leave some suggestions. Please my husband begs you!

My life and random thoughts

All my life I hear the saying, you can do anything you put your mind too! That is what I remember most about growing up. Here is a bit about how I came to choose Cochlear Implants at age 38.

I had rheumatic fever around age 3. It damaged my hearing and heart. My hearing loss is a sensorineural hearing loss.

*This means that a Sensorineural hearing loss occurs when there is damage to the inner ear (cochlea) or to the nerve pathways from the inner ear (retrocochlear) to the brain. Sensorineural hearing loss cannot be medically or surgically corrected. It is a permanent loss.
Sensorineural hearing loss not only involves a reduction in sound level, or ability to hear faint sounds, but also affects speech understanding, or ability to hear clearly.
Sensorineural hearing loss can be caused by diseases, birth injury, drugs that are toxic to the auditory system, and genetic syndromes. Sensorineural hearing loss may also occur as a result of noise exposure, viruses, head trauma, aging, and tumors.

Way back in the 70's they did not fit hearing aids for this type of loss or at least what they told my mom. It was at the age of 10 that I finally got my first hearing aid. A behind the ear(BTE) Beltone. Oh the sounds....I remember walking up and down the street to hear the birds sing. I remembered at 10 thinking oh it does not get any better than this.

Fast forward......

I married a wonderful man at 20, went to college got my degree in Early Childhood/Elementary Education, went to work at a fantastic school, had a wonderful child, finished my masters in Special Education, stayed at my fantastic school for 14 years(still there), and lost the majority of my hearing!

Around 7 years ago, I decided I could not do this anymore. The hearing loss was too great, but I did the best I could with so little hearing. I just went through my daily life. I started the process for cochlear implants in 2006. I found out I was a candidate within one day. I guess when you have 17% hearing in my left ear and 1% in my right ear, you qualify. I picked the best doctor in the world(my opinion), Dr. Ladabie at Vanderbilt Medical Center. My audiologist, Susan, is outstanding. That was the easy part. I was denied around 5-7 times from my insurance company. I had to have a fantastic organization, Let Them Hear, work to get my approval. I will write more about them later, just put it this way, they are the reason for this all.

So July 19, 2007 my dear scared husband took me to Vanderbilt and waited and waited from 6 A.M. to 3:30 P.M. All I remember is how thirsty I was. I drank 2 Sprites and wanted to go to back to sleep. The recovery was very hard. I tried to push myself into recovery from bilateral surgery in 5 days. I was back to school on the 29th of July.

Activation was the 8th of August - one day before the start of school. I wish I recorded my activation, but I really did not know what to expect. I just wanted to be able to hear my child talk, the rest was just gravy. There is not a word in the English language to describe what happen. All I know is my life has changed - - - completely!!

How completely has my life changed. I can talk to Jenna without turning around. I can hear the music as she dances at recitals and class. I can listen to music with an ipod. I have not enjoyed music in 20 years. I can have a conversation with my husband and understand him. I can continue to do the career I love so much, teach.

As I continue to write these blogs, I will share about me, my family, friends and fantastic CI group. With this New Year, I am so thankful for each day and the new sounds and enjoyment of renewed happiness.