Apparently there is a game of tag going around here and I've been caught. Here are the rules...
1) Link to the person that tagged you, and post the rules on your blog.
2) Share 7 facts about yourself.
3) Tag 7 random people at the end of your post, and include links to their blogs.
4) Let each person know that they have been tagged by leaving a comment on their blog.
Amy, the person who tagged me, writes a beautiful blog about her son Prince Andrew who is autistic, adhd, ocd and deaf and their homeschooling experience. She is a very religious and spiritual person, with great faith and her blogs are full of love and inspiration...
Note: Amy is only partially responsible for what you are about to read...
Fact 1) My first boyfriend's name was Scott Sweren. He had red hair, green eyes, yellowish teeth and zits (we were about thirteen). My mom called him Opey Taylor.
Fact 2) My best friend Julie and I road-tripped to Toronto after the Baltimore All-Star Baseball Game of '93, because we were angry that Cito Gaston didn't pitch Mike Mussina in his hometown. We drove nine hours, arrived at our hotel, showered, changed and headed out of the hotel to hit the bars. We were kind of lingering for a minute trying to catch our bearings to decide whether we needed to take a taxi to Yonge Street, when two hookers started yelling at us to get off their beat...
Fact 3) I don't love teaching, but I love every single one of my students.
Fact 4) I sometimes talk to my Pop, who passed away three years ago, while I'm driving in the car. I wore his favorite hat to Jordan's concert, so he could share that moment with me.
Fact 5) I won honorable mention in a Martin Luther King, Jr. Essay Contest when I was in fifth grade. My essay was about how my school guidance counselor Mrs. Block helped me through my parents' divorce.
Fact 6) My husband's hands were sweaty the first three years we were together, and I thought that was really sexy.
Fact 7) I can't believe I'm going to do this... when I was in London this past summer with four of my students, there was a sign in the window of a shop called JOY that said the first twenty-five people in line dressed in a bathing suit or undergarments would get a free outfit...let's just say I sacrificed my dignity so that four girls could have the dream all women dream come true...FREE CLOTHES...Guess what I found on google.com? Yes, I was first in line:))
If you are reading this, laughing AT me and have a blog, consider yourself TAGGED!!!
PS. Definitely NO Tag-backs!
Friday, November 30, 2007
MUSIC IN HIS EARS
As I've said before Jordan attends a middle school specializing in Music Education. He has guitar lessons two hours a week, Music Appreciation one hour a week and Music class during school hours two hours a week. School started on September 13th and the school gave their first concert yesterday in honor of the holiday today..."TUSCANY DAY." The choir teacher sent home a notice saying that all students should dress in a white button-down shirt, black pants and a black ribbon to be tied around the shirt collar, as well as a pair of shoes that were nicer than tennis shoes. We had discussed the time and place of the big event the day before, yet before Jordan left to take the bus to school, he said, "Mamma, you remember what's happening this morning, don't you?" I looked at my son with that look that says, "Do you think that I could forget that you have to sing in a Church this morning...you are wearing a black ribbon tied around your collar...son!" He understood my "What kind of question is that look?" laughed and went on his way.
I mean, have I ever missed a school event or function? When he was in pre-school I arrived twenty minutes early to every event just to grab the front-row seat (totally rude of me because I'm like five nine)and position the videocamera (that is now broken:(). I sweated through end of the year program after program where as soon as the music would start, Jordan would sprint to my lap and slam his mouth shut refusing to sing. His teachers would try in every way possible to convince him to rejoin the group and sing, then Jordan would throw a temper tantrum, kick and scream, and I would hug him and sit there watching the rest of his class sing adorable little Italian songs that I didn't understand anyway. The third year of pre-school (five years old)after sitting in my lap for the first four songs, the teacher popped a casette in the recorder and a song started jammin'. Jordan jumped up, got in line with the rest of his class and began groovin' to a dance the teachers had taught the class. I was so shocked that I didn't even get it on tape...after three years of bringing the videocamera for nothing, the thought never occurred to me to tape this dramatic event. What Jordan could hear with his hearing aids was enough to give him rhythm, but not enough to assist him in learning the lyrics and songs spontaneously.
His participation slightly improved year by year because I taught him that if he mouthed the word "watermelon" over and over again, it would look like he was singing. How terrible is that? But learning the Italian songs was just too trying on me, I didn't understand the words or the melodies, so for me it was just too much...I focused on other aspects of learning like keeping up with the three hours of homework a day he had beginning in first grade. You just can't even imagine how much work the Italian School System gives our kids, when Jordan will have finished Middle school here, he could sleep through high school in the States and still get straight As.
Anyway, to make a long story short, when Jordan was implanted all of this stress with regard to music gradually changed. He could hear, he could hear to the point that he could catch the repetitive refrains to the songs and actually began singing along with his class. It's so funny, cause he doesn't just sing, he grooves and dances while he sings - crazy. We started him with piano lessons one year after he received his cochlear implant,nothing intensive, just so that he could have music in his life.
Fast forward to yesterday morning. I arrived outside the DUOMO of Grosseto and began looking for Jordan. His Math teacher (they are called Professors in Middle School and if you say "teacher" they get offended)told me he had been "running around" and she had not recently seen him. I digested and continued looking for him. When I found him zigzagging across the top step of the Church, I stopped him, disciplined him and told him to get in line to enter the Church.
Time out, FYI: My husband is Catholic and I am Jewish...religion is another post entirely that one day I will get to, but now is not the moment. Just keep that in mind while I describe the rest of this, because for some, this Choir moment would have had more of a religious significance than it did for me.
Jordan walked inside the Church with his classmates and headed to the stairs behind the altar, chaos ensued as about five schools and parents, grandparents, etc. raced to find a good seat. This time they were faster than me and I ended up in the sixth row back on the right, luckily I had a pretty good view of Jordan that was only slightly obstructed by a woman standing, who was short enough to be able to stand without me reaming her out yet tall enough to annoy me.
The Choir teacher, dressed in a very festive cherry red blazer made the necessary introductions, waved her arms and the choir along with Jordan ALL started singing...THE ITALIAN NATIONAL ANTHEM! There was my little Jewish American son in his adorable black ribbon bow tie singing The Italian National Anthem in a Church! One of the most beautiful moments of my life...I started bawling, of course, whipped out the tissues and began the dabbing process. Jordan kept looking over at me and I kept sending him the thumbs up sign. The Choir sang two songs, then mini orchestras played about twelve more, I knew he was dying sitting on the altar, but he managed to behave. After the orchestras finished their finale, the Choir stood up and and sang two more songs accompanied by the orchestra. Just before the final two songs, I turned around and saw my mother-in-law standing behind me, neither one of us had known where the other one was...divine providence:) So, we watched the final two songs together and just before the final song she leaned over and said, "Your mom would have been happy if she were here to see Jordan singing..." Well, that just about did me in, so I started bawling again and went through another pack of tissues. I have to say that I was pretty thankful when the concert ended, because I mean how much can a person take?? Very emotional experience. It just gets better...
I went to thank the Choir teacher and as I look over to the right I see Jordan hugging my mil and my mil is sobbing, tears streaming, and Jordan is just letting himself be hugged.
My mil took Jordan's diagnosis really hard and was truly devastated by the fact that she couldn't sing to him or teach him all of the songs she sang as a child that were such an important part of her childhood...my mom was a singer when she was young. I'm tonedeaf, but I jammed to Olivia Newton John and the Osmonds growing up...yes, I too sent Shawn Cassidy fanmail. Soooo, this was a colossal event for my mil who continues to be amazed by her grandson.
On the way to the car, Jordan looked at me and said, "Mamma, why were you and Nonna crying?" (fishing for compliments) I looked right back at him and said, "Because you are deaf. When they told us you were deaf, we never in a million years would have remotely imagined that you would be singing in a Choir in a Church at age eleven and seeing you sing makes us realize that you WILL BE ABLE TO DO WHATEVER YOU WANT IN THE FUTURE." Jordan looked at me, smiled and said..."Mom, can we go to the Newsstand and buy a pack of Yu-ghi-o cards?"
I mean, have I ever missed a school event or function? When he was in pre-school I arrived twenty minutes early to every event just to grab the front-row seat (totally rude of me because I'm like five nine)and position the videocamera (that is now broken:(). I sweated through end of the year program after program where as soon as the music would start, Jordan would sprint to my lap and slam his mouth shut refusing to sing. His teachers would try in every way possible to convince him to rejoin the group and sing, then Jordan would throw a temper tantrum, kick and scream, and I would hug him and sit there watching the rest of his class sing adorable little Italian songs that I didn't understand anyway. The third year of pre-school (five years old)after sitting in my lap for the first four songs, the teacher popped a casette in the recorder and a song started jammin'. Jordan jumped up, got in line with the rest of his class and began groovin' to a dance the teachers had taught the class. I was so shocked that I didn't even get it on tape...after three years of bringing the videocamera for nothing, the thought never occurred to me to tape this dramatic event. What Jordan could hear with his hearing aids was enough to give him rhythm, but not enough to assist him in learning the lyrics and songs spontaneously.
His participation slightly improved year by year because I taught him that if he mouthed the word "watermelon" over and over again, it would look like he was singing. How terrible is that? But learning the Italian songs was just too trying on me, I didn't understand the words or the melodies, so for me it was just too much...I focused on other aspects of learning like keeping up with the three hours of homework a day he had beginning in first grade. You just can't even imagine how much work the Italian School System gives our kids, when Jordan will have finished Middle school here, he could sleep through high school in the States and still get straight As.
Anyway, to make a long story short, when Jordan was implanted all of this stress with regard to music gradually changed. He could hear, he could hear to the point that he could catch the repetitive refrains to the songs and actually began singing along with his class. It's so funny, cause he doesn't just sing, he grooves and dances while he sings - crazy. We started him with piano lessons one year after he received his cochlear implant,nothing intensive, just so that he could have music in his life.
Fast forward to yesterday morning. I arrived outside the DUOMO of Grosseto and began looking for Jordan. His Math teacher (they are called Professors in Middle School and if you say "teacher" they get offended)told me he had been "running around" and she had not recently seen him. I digested and continued looking for him. When I found him zigzagging across the top step of the Church, I stopped him, disciplined him and told him to get in line to enter the Church.
Time out, FYI: My husband is Catholic and I am Jewish...religion is another post entirely that one day I will get to, but now is not the moment. Just keep that in mind while I describe the rest of this, because for some, this Choir moment would have had more of a religious significance than it did for me.
Jordan walked inside the Church with his classmates and headed to the stairs behind the altar, chaos ensued as about five schools and parents, grandparents, etc. raced to find a good seat. This time they were faster than me and I ended up in the sixth row back on the right, luckily I had a pretty good view of Jordan that was only slightly obstructed by a woman standing, who was short enough to be able to stand without me reaming her out yet tall enough to annoy me.
The Choir teacher, dressed in a very festive cherry red blazer made the necessary introductions, waved her arms and the choir along with Jordan ALL started singing...THE ITALIAN NATIONAL ANTHEM! There was my little Jewish American son in his adorable black ribbon bow tie singing The Italian National Anthem in a Church! One of the most beautiful moments of my life...I started bawling, of course, whipped out the tissues and began the dabbing process. Jordan kept looking over at me and I kept sending him the thumbs up sign. The Choir sang two songs, then mini orchestras played about twelve more, I knew he was dying sitting on the altar, but he managed to behave. After the orchestras finished their finale, the Choir stood up and and sang two more songs accompanied by the orchestra. Just before the final two songs, I turned around and saw my mother-in-law standing behind me, neither one of us had known where the other one was...divine providence:) So, we watched the final two songs together and just before the final song she leaned over and said, "Your mom would have been happy if she were here to see Jordan singing..." Well, that just about did me in, so I started bawling again and went through another pack of tissues. I have to say that I was pretty thankful when the concert ended, because I mean how much can a person take?? Very emotional experience. It just gets better...
I went to thank the Choir teacher and as I look over to the right I see Jordan hugging my mil and my mil is sobbing, tears streaming, and Jordan is just letting himself be hugged.
My mil took Jordan's diagnosis really hard and was truly devastated by the fact that she couldn't sing to him or teach him all of the songs she sang as a child that were such an important part of her childhood...my mom was a singer when she was young. I'm tonedeaf, but I jammed to Olivia Newton John and the Osmonds growing up...yes, I too sent Shawn Cassidy fanmail. Soooo, this was a colossal event for my mil who continues to be amazed by her grandson.
On the way to the car, Jordan looked at me and said, "Mamma, why were you and Nonna crying?" (fishing for compliments) I looked right back at him and said, "Because you are deaf. When they told us you were deaf, we never in a million years would have remotely imagined that you would be singing in a Choir in a Church at age eleven and seeing you sing makes us realize that you WILL BE ABLE TO DO WHATEVER YOU WANT IN THE FUTURE." Jordan looked at me, smiled and said..."Mom, can we go to the Newsstand and buy a pack of Yu-ghi-o cards?"
Tuesday, November 27, 2007
ABBIE'S ACTIVATION VIDEO: EXCELLENT AUDIOLOGIST!
ABBIE BLOGS...
...I am grateful that I finally accepted that I am deaf, it is a part of who I am.
I am grateful for the experience of total silence; it made me a better person by turning off the music of the daily hustle and bustle of life forcing me to put things in perspective.
I am grateful for my family who supported me every step of the way especially those who were my ears when I had nothing to give back.
I am grateful for being blessed with the perfect pooch. She is my ears when I am sleeping. She never leaves my side. She accepts me as I am and leaves all my hardware alone.
I am grateful for my friends who were always concerned but never once pitying me and always willing to help me.
I am grateful for the people I have met who are just like me. They opened my eyes making me realizing that I am not the only one walking this earth without hearing the crunch of the grass give way underneath my feet.
I am grateful that I have a awesome audiologist who listens to me.
I am grateful for everything that I have seen, touched, smelted, tasted and heard for it serves a higher purpose.
I am grateful for the men, women, and children that walk in and out my life opening doors to new things.
Most of all, I am just plain grateful for being chosen for this opportunity to wade through life being me...
HOW BEAUTIFUL IS ABBIE!?!! (BTW, a full set (of acrylics) in Grosseto costs minimum 90 euros - crazy!) Aside from this, the audiologist on - but not seen in- this video taught me a great deal about mapping and mapping strategies. She shot specific question after question at Abbie allowing for some fine tuning of Abbie's map. It's almost ten here, but as soon as I have a minute, I plan on writing a list of questions asked by the audiologist as well as her explanation of the three mapping modes - that I never knew existed...I did not know that for small children the surgeon could perform an ABR during surgery to test the cochlear implant and predict a map based on nerve responses...AMAZING! Although now that I'm thinking about it, I vaguely remember the surgeon telling me they tested the implant while Jordan was under and that it worked...but I did not realize that an ABR performed during the surgery could create a map! Not all audiologists are created equally, hats off to Abbie's and thanks to Abbie for allowing me to post this. (Abbie is a member of the yahoo support group CI HEAR)
-------------------------------MORE JOSH SWILLER--------------------
SHARON PAJKA-WEST PHD. THE AUTHOR OF THE BLOG: DEAF CHARACTERS IN ADOLESCENT LITERATURE (LIVE FOR HER INTERVIEWS!) JUST BLOGGED ABOUT JOSH SWILLER'S APPEARANCE AT GALLAUDET YESTERDAY...CHECK IT OUT! (I'M SUCH A FAN!)
SO MANY OPINIONS ON HOW I SHOULD RAISE MY CHILD...
My eleven year old deaf son is perfect (enough:)) and he will choose when, where and how to accomplish his goals in life thanks to the cochlear implant. He can choose to be Deaf and speak using ASL or LIS (Italian Sign Language) when he plans for his future or he will continue down his road in the mainstream community. A Deaf child who has not been raised with the oral approach MUST become a part of the DEAF Community. My child is not YOUR child until he CHOOSES to become a part of the DEAF Community, and even then, he will still be MY child because I love him and only want him to be happy...but, I appreciate your compassion and concern for my child's well-being.
THE MOST BEAUTIFUL VERSION EVER OF SUPERCALIFRAGILISTIC...
AMAZING...MEET NEAL...ADORABLE, ON-KEY (NOT LIKE ME, I'M TONE-DEAF)AND AN AVID READER...(I just stole a song from Christina's blog, (The song is by Colbie Caillat-I'm addicted)to deactivate it and watch Neal's video, scroll down to the bottom of this page and hit the stop button)
HIS MOM SAYS...
We didn't find out Neal was deaf until he was 18 months old. We then tried
hearing aids, which did nothing for him. We also started signing with him
so that he could have some language. After a year of jumping through
insurance hoops, Neal got his first cochlear implant. It was activated when
he was 2 years, 9 months old. Having never heard a sound before in his life
(Neal is as deaf as deaf can get), he needed intensive therapy to catch up
on language. He attended an oral-deaf preschool for three years and was
ready for a mainstream setting in Kindergarten. He is now in second grade
and reading well above grade level. He got his second implant last year.
Neal is proof that a even a child who is identified fairly late can have
excellent results with cochlear implants.
HIS MOM SAYS...
We didn't find out Neal was deaf until he was 18 months old. We then tried
hearing aids, which did nothing for him. We also started signing with him
so that he could have some language. After a year of jumping through
insurance hoops, Neal got his first cochlear implant. It was activated when
he was 2 years, 9 months old. Having never heard a sound before in his life
(Neal is as deaf as deaf can get), he needed intensive therapy to catch up
on language. He attended an oral-deaf preschool for three years and was
ready for a mainstream setting in Kindergarten. He is now in second grade
and reading well above grade level. He got his second implant last year.
Neal is proof that a even a child who is identified fairly late can have
excellent results with cochlear implants.
Monday, November 26, 2007
JUST ANOTHER MORNING IN TUSCANY...
Whoa! This morning has been really interesting...First of all, a mom left a comment on the blog with a youtube video of her baaaaeautiful little girl signing:
Gotta love these moments of communication between parent and child, something as ordinary as eating an ice-cream or yogurt becomes magical and extraordinary...
Then, I received an email from a guy I went to ELEMENTARY SCHOOL WITH!!! I haven't seen or heard from this guy in like twenty years - on one hand I'm feeling ancient because Jordan just finished Elementary School and on the other hand I've got this warm, gushy, how-nice-was-that, that he GOOGLE SEARCHED ME, took the time to write me a note saying he heard about the book and flipped through the website! The greatest part is that this was the guy who was the "nerd" of the class (sorry Jay, but you know you were smarter than all of us put together!), always won the "smarties" in Mrs. King's class for guessing the Math Stumper of the week, was regularly the class Spelling Bee Champion(although, I won a couple of those myself), and ate glue on a regular basis.
He was not the type to play "Truth or Dare," "Spin the Bottle," or "Seven minutes in heaven," (we started early at Church Lane Elementary School)but now that I'm thinking about it, he just may have kissed Amy Eisenberg:)) My friend Rhonda sent me one of those send-to-everyone emails about a Bill Gates speech where one of the things Gates said went something like this: "Be nice to the Geek of the Class, because you just may end up working for him!" I am so sure that Jay has a lot of people working for him and I wish him all the success and happiness in the world, because he was always a great guy. (he just sent me pix of his BEAUTIFUL family, he has the most adorable little red-head of a boy and he is currently a...DOCTOR!! I have no doubt that he is an excellent one at that!)
Now, the last part of my morning was a nightmare. I took Jordan for his Anti-menningococco vaccine and he basically had a panic attack and refused to get the needle. It took one hour and twenty euros to convince him, and although I feel like I was taken advantage of, the twenty euros were apparently enough to help him overcome his anxiety...which is okay with me, because the alternative was me jumping on him and pinning him down. So glad I didn't have to go there...
Gotta love these moments of communication between parent and child, something as ordinary as eating an ice-cream or yogurt becomes magical and extraordinary...
Then, I received an email from a guy I went to ELEMENTARY SCHOOL WITH!!! I haven't seen or heard from this guy in like twenty years - on one hand I'm feeling ancient because Jordan just finished Elementary School and on the other hand I've got this warm, gushy, how-nice-was-that, that he GOOGLE SEARCHED ME, took the time to write me a note saying he heard about the book and flipped through the website! The greatest part is that this was the guy who was the "nerd" of the class (sorry Jay, but you know you were smarter than all of us put together!), always won the "smarties" in Mrs. King's class for guessing the Math Stumper of the week, was regularly the class Spelling Bee Champion(although, I won a couple of those myself), and ate glue on a regular basis.
He was not the type to play "Truth or Dare," "Spin the Bottle," or "Seven minutes in heaven," (we started early at Church Lane Elementary School)but now that I'm thinking about it, he just may have kissed Amy Eisenberg:)) My friend Rhonda sent me one of those send-to-everyone emails about a Bill Gates speech where one of the things Gates said went something like this: "Be nice to the Geek of the Class, because you just may end up working for him!" I am so sure that Jay has a lot of people working for him and I wish him all the success and happiness in the world, because he was always a great guy. (he just sent me pix of his BEAUTIFUL family, he has the most adorable little red-head of a boy and he is currently a...DOCTOR!! I have no doubt that he is an excellent one at that!)
Now, the last part of my morning was a nightmare. I took Jordan for his Anti-menningococco vaccine and he basically had a panic attack and refused to get the needle. It took one hour and twenty euros to convince him, and although I feel like I was taken advantage of, the twenty euros were apparently enough to help him overcome his anxiety...which is okay with me, because the alternative was me jumping on him and pinning him down. So glad I didn't have to go there...
Sunday, November 25, 2007
IT'S SIGNING TIME...
Some of you may be wondering where is the sign language on this blog of a Mamma with a deaf child? I've been requesting videos from everyone on all of my groups and people are not sending me videos of their kids who sign, only Hailey has come through for me. Jordan does not sign, but as I've said, I'm interested in learning. So, I asked a member of the yahoo group Listen-Up to provide me with some resources. Karen is an interpreter and one of the places she sent me was Signing Time. As I can tell from visiting the site, I'm probably the only American who doesn't know about Signing Time because the site has so much information: videos for teachers, children, parents, blogs, etc. Personally, the Thanksgiving video inspired me, so I'm going to share it with one and all. The video talks to kids, but I consider myself a big child, so I reallllllly like it and understand it. I'm thinking that these videos could go a long way in teaching me a thing or two about sign, so I've "signed up" for their newsletter that will give me new videos of signs to use during the holidays.
I will say, at the risk of being harrassed, that the style is just a tad too Romper-Roomish, or Mr. Rogersish, but then again, I'm 36 and I don't think they're talkin to me:) but I'm listening...
Karen also suggested www.signwithsam.com and www.signalot.com as possible resources for children learning sign language.
OKAY! Just found this other SIGNING TIME video and RACHEL is no longer resembling Mr. Rogers!!! She is actually rockin' in this one!!! I'm thinking I could become a SIGNING TIME FAN!! CHECK THIS ONE OUT!!
I will say, at the risk of being harrassed, that the style is just a tad too Romper-Roomish, or Mr. Rogersish, but then again, I'm 36 and I don't think they're talkin to me:) but I'm listening...
Karen also suggested www.signwithsam.com and www.signalot.com as possible resources for children learning sign language.
OKAY! Just found this other SIGNING TIME video and RACHEL is no longer resembling Mr. Rogers!!! She is actually rockin' in this one!!! I'm thinking I could become a SIGNING TIME FAN!! CHECK THIS ONE OUT!!
Saturday, November 24, 2007
CI ACTIVATION ADULT-STYLE
One of the most frustrating and difficult moments for a parent is the activation process, because your child cannot tell you what he hears and how well he hears each sound. Jordan is improving in this process and watches the computer screen as the audiologist does his maps. He'll say, "Raise this two levels" or "Lower this three levels," etc, but what about the babies? This is why it is so important to have your children mapped by a trained audiologist with a great deal of experience and for the parents to observe their kids to see what type of results they are having with the implant. I met Jen from Tennessee when she left a comment telling me about these videos on another post and they blew me away. Ironically, she wrote how the second video was boring because she spent the entire video saying, "This is too loud or your voice is too soft..." this was the part that interested me the most as a parent of a child who was unable to make such clarifications at his first activations. Perhaps by watching Jen's videos, parents will have a better idea of what questions to ask their children and their audiologists. Jen writes a blog about her cochlear implant experience, I am including a post under the videos about what exactly she has been hearing with her cochlear implants, this woman is beautiful...
Part 2
You'd be surprised. I can't believe what I'm hearing...it has just been so incredible. I think I'll just make a list:
*Tuesday I heard my kids talking. I could understand the three oldest ones well, and could understand hubby fairly well.
*Wednesday I woke up early...at 7:30. Might not seem early to everyone else until you consider that I usually sleep in when the kids don't have school...but I wanted to put the processor on and start listening! When I was cooking Ellie got some sugar on a styrofoam plate and was shaking it about three feet away and saying, "Can you hear this, Mama??"...and I actually could hear it scratching on the plate. And...this was with Hannah Montana on the TV in the next room! Incidentally, I haven't ever realized how loud the girls keep the TVs...but I can hear them ALL THE TIME.
*My mom texted me when she arrived at the airport in Houston. I was in the middle of washing dishes and I abandoned the sink (left the water running) and went to try to call her. I locked myself in the bathroom and dialed. I heard the phone ring and then I heard her say "Hello, Jennifer!" Right about that time the processor shorted out. As I mentioned before, it has issues, and at that particular time, the current issue was shorting out every time I switched programs. Anyhow, realizing that I couldn't talk to Mom anymore, I took the phone to Katie and she finished my conversation. It would have been a very difficult call anyway...she was in the airport and her cell phone connection was terrible, so it was probably for the best...but I called her...and I understood her...for all of about three seconds :). (I was relieved to find that while the sink was overflowing when I got back, it was thankfully overflowing into the other side, and not overflowing all over ky kitchen floor.)
*When I got a shirt out of the closet to get ready for church, I heard a tinkling that I hadn't heard before. I looked and located a few hangers at the end of my closet that were bumping together and making that tinkly sound!
*At church, the preacher's wife said that she wanted to test me, so she had me look away and then she asked, "How are you doing?" I grinned and looked at her, and said, "I'm fine, thanks!!" :) During church I deliberately looked away from the speakers several times to see if I could hear them without looking. I could nearly always pick up a few words here and there. The singing in church was astonishing...several voices actually sounded just like I remembered them from almost 18 months ago, before I started losing what hearing I had left. I had not at all set my sights on getting music back...but if it sounded that good at just over 24 hours...wow, I can't imagine what it will sound like in the next few weeks and months!
*We went to my mom's after church on Wednesday to see them (they got in from Nicaragua while we were at church). Mom presented me with the Metropolitan Museum of Art's "A New York Christmas" CD...jazz Christmas music!!! It doesn't sound just right yet...but, ya know...I think that it's possible that by Christmas it may be great :).
*Thursday morning when I woke up I didn't put the processor on right away. I have always had a hard time putting Thing 1 on due to the vibrotactile problems...when I put it on, I always get a head buzz that's mildly uncomfortable. I'm having a hard time getting adjusted to the idea that Thing 2 isn't the same way...I can just slap it on, it gives me a few little beeps, then comes on...just sound, no discomfort. When I finally did put on Thing 2 I was in the bathroom, and the noise just about blew me away. I headed out the bathroom, down the hall, and there was the TV again...the squawkbox...with a football game blaring. I could hear it all the way in the bathroom...and it was LOUD! I could hear it well enough to know that the captioning didn't keep up with the game ;).
*We went to my mom's for Thanksgiving lunch and after lunch I went back to get a refill on my Coke. Then men were watching the football game, and as I poured the Coke I heard a "pshhhhhhhhhhh". I asked hubby, "What's that noise??" and he said, "I don't hear anything!" About that time it faded out, so I turned back to pour some more Coke, and the second I did it started again. I realized that I was hearing the fizz of my soft drink...over the sound of the men talking and the football game!
*When we went to the in-laws' for dinner, we were in line fixing plates and I heard my mother-in-law call my name. I turned and looked and she was grinning. It's a new thing to be able to just call me...I don't usually respond...and the whole family has gotten in the habit of flapping their hands to get my attention...a habit that it looks like I'm gonna have to be breaking them of soon ;).
*Ellie came and sat with me on the bed last night and was watching Disney Channel. She was about to ask me something, and I said, "Wait!" and turned my head so I wasn't looking at her. She figured out pretty quickly to talk slowly and loudly, but I heard every word when she said, "I just brushed my teeth, and I've been eating M&M's. Are my teeth dirty? Do I need to brush them again?" (talk about unpredictable...there's no way I could have guessed any part of that sentence!!)
*Claire and I were on the bed this morning and I asked her, "Is the phone ringing?" She waved her hand and said "No" ("Bummer," I thought to myself) and then I heard it again, and asked again, "IS THE PHONE RINGING?" This time, she said, "Oh! Yes!" and dashed off to get it. A big deal...I've been hearing the phone ring this week, but before that, I haven't heard it in nearly 18 months :). One of these days, I might just answer it ;)!
*Today hubby was outside banging and clanging and chopping leaves with the mower...and I could barely think for all the noise I was hearing up here in the bedroom ;). His work is LOUD!
*and the icing on the cake...tonight we were on our way to grab dinner, and were in the dark little car. I was driving, and hubby started talking, and I decided I'd just listen instead of turning on the light to try to lipread. We did that all the way to Nashville...about an hour...and I was able to understand at least 90% of what he said to me. I did have to listen carefully...and when he was talking to Katie in the backseat I didn't pay much attention and I didn't catch much. We went shopping after dinner and I heard several customers in the store talking to their kids, on their phones, etc. and was able to understand a lot of what they were saying when I concentrated. It's amazing how loudly people talk in stores!!
I've heard lots more sounds, and will hear more...but this was just a few (I know you're glad I'm done ;) ). I'll list more in the next day or so...I'm just so amazed at my newfound capabilities!! This hearing business is rather incredible!!!!
Part 2
You'd be surprised. I can't believe what I'm hearing...it has just been so incredible. I think I'll just make a list:
*Tuesday I heard my kids talking. I could understand the three oldest ones well, and could understand hubby fairly well.
*Wednesday I woke up early...at 7:30. Might not seem early to everyone else until you consider that I usually sleep in when the kids don't have school...but I wanted to put the processor on and start listening! When I was cooking Ellie got some sugar on a styrofoam plate and was shaking it about three feet away and saying, "Can you hear this, Mama??"...and I actually could hear it scratching on the plate. And...this was with Hannah Montana on the TV in the next room! Incidentally, I haven't ever realized how loud the girls keep the TVs...but I can hear them ALL THE TIME.
*My mom texted me when she arrived at the airport in Houston. I was in the middle of washing dishes and I abandoned the sink (left the water running) and went to try to call her. I locked myself in the bathroom and dialed. I heard the phone ring and then I heard her say "Hello, Jennifer!" Right about that time the processor shorted out. As I mentioned before, it has issues, and at that particular time, the current issue was shorting out every time I switched programs. Anyhow, realizing that I couldn't talk to Mom anymore, I took the phone to Katie and she finished my conversation. It would have been a very difficult call anyway...she was in the airport and her cell phone connection was terrible, so it was probably for the best...but I called her...and I understood her...for all of about three seconds :). (I was relieved to find that while the sink was overflowing when I got back, it was thankfully overflowing into the other side, and not overflowing all over ky kitchen floor.)
*When I got a shirt out of the closet to get ready for church, I heard a tinkling that I hadn't heard before. I looked and located a few hangers at the end of my closet that were bumping together and making that tinkly sound!
*At church, the preacher's wife said that she wanted to test me, so she had me look away and then she asked, "How are you doing?" I grinned and looked at her, and said, "I'm fine, thanks!!" :) During church I deliberately looked away from the speakers several times to see if I could hear them without looking. I could nearly always pick up a few words here and there. The singing in church was astonishing...several voices actually sounded just like I remembered them from almost 18 months ago, before I started losing what hearing I had left. I had not at all set my sights on getting music back...but if it sounded that good at just over 24 hours...wow, I can't imagine what it will sound like in the next few weeks and months!
*We went to my mom's after church on Wednesday to see them (they got in from Nicaragua while we were at church). Mom presented me with the Metropolitan Museum of Art's "A New York Christmas" CD...jazz Christmas music!!! It doesn't sound just right yet...but, ya know...I think that it's possible that by Christmas it may be great :).
*Thursday morning when I woke up I didn't put the processor on right away. I have always had a hard time putting Thing 1 on due to the vibrotactile problems...when I put it on, I always get a head buzz that's mildly uncomfortable. I'm having a hard time getting adjusted to the idea that Thing 2 isn't the same way...I can just slap it on, it gives me a few little beeps, then comes on...just sound, no discomfort. When I finally did put on Thing 2 I was in the bathroom, and the noise just about blew me away. I headed out the bathroom, down the hall, and there was the TV again...the squawkbox...with a football game blaring. I could hear it all the way in the bathroom...and it was LOUD! I could hear it well enough to know that the captioning didn't keep up with the game ;).
*We went to my mom's for Thanksgiving lunch and after lunch I went back to get a refill on my Coke. Then men were watching the football game, and as I poured the Coke I heard a "pshhhhhhhhhhh". I asked hubby, "What's that noise??" and he said, "I don't hear anything!" About that time it faded out, so I turned back to pour some more Coke, and the second I did it started again. I realized that I was hearing the fizz of my soft drink...over the sound of the men talking and the football game!
*When we went to the in-laws' for dinner, we were in line fixing plates and I heard my mother-in-law call my name. I turned and looked and she was grinning. It's a new thing to be able to just call me...I don't usually respond...and the whole family has gotten in the habit of flapping their hands to get my attention...a habit that it looks like I'm gonna have to be breaking them of soon ;).
*Ellie came and sat with me on the bed last night and was watching Disney Channel. She was about to ask me something, and I said, "Wait!" and turned my head so I wasn't looking at her. She figured out pretty quickly to talk slowly and loudly, but I heard every word when she said, "I just brushed my teeth, and I've been eating M&M's. Are my teeth dirty? Do I need to brush them again?" (talk about unpredictable...there's no way I could have guessed any part of that sentence!!)
*Claire and I were on the bed this morning and I asked her, "Is the phone ringing?" She waved her hand and said "No" ("Bummer," I thought to myself) and then I heard it again, and asked again, "IS THE PHONE RINGING?" This time, she said, "Oh! Yes!" and dashed off to get it. A big deal...I've been hearing the phone ring this week, but before that, I haven't heard it in nearly 18 months :). One of these days, I might just answer it ;)!
*Today hubby was outside banging and clanging and chopping leaves with the mower...and I could barely think for all the noise I was hearing up here in the bedroom ;). His work is LOUD!
*and the icing on the cake...tonight we were on our way to grab dinner, and were in the dark little car. I was driving, and hubby started talking, and I decided I'd just listen instead of turning on the light to try to lipread. We did that all the way to Nashville...about an hour...and I was able to understand at least 90% of what he said to me. I did have to listen carefully...and when he was talking to Katie in the backseat I didn't pay much attention and I didn't catch much. We went shopping after dinner and I heard several customers in the store talking to their kids, on their phones, etc. and was able to understand a lot of what they were saying when I concentrated. It's amazing how loudly people talk in stores!!
I've heard lots more sounds, and will hear more...but this was just a few (I know you're glad I'm done ;) ). I'll list more in the next day or so...I'm just so amazed at my newfound capabilities!! This hearing business is rather incredible!!!!
Friday, November 23, 2007
"THE LANGUAGE OF BASEBALL"
(Video care of one of my special friends Nestor Aparicio. To see more footage of Cal's incredible experience in China visit www.wnst.net and click on wnstv)
Cal Ripken Jr. is one of the last great heroes of our times, and my dad's number one hero, that is why he was chosen as my father's inspiration for RALLY CAPS. My dad's passion for baseball began as a child and only increased when he realized he had two daughters who could drill a wiffleball better than most of the boys in the hood. Some of my greatest memories are cheering with Wild Bill and high-fiving my dad and sister as the BUDWEISER BEER MUG filled four times on the Orioles' scoreboard after Pat Kelly, Terry Crowley or my number one all time favorite Oriole Eddie Murray hit a clutch grandslam in the bottom of the ninth in Memorial Stadium. We were never speechless as children, we talked baseball.
To help pay for college I worked at a happenin' bar called Bohager's Bar and Grill, where regulars included Mark McGwire (when he played in Baltimore), Brady Anderson, Jeffrey Hammonds (loved him), Damon Buford and Paul Molitor...I served all of them, could even tell you what they drank, but I don't want to bore anyone...One player who NEVER made an appearance at Bohager's was Cal Ripken Jr. - Not even when Keanu Reeves' band Dogstar played and Keanu Reeves himself invited Ripken personally to attend the concert. Ripken's staff showed up, but he stayed at home with his family. (I hung out with Keanu Reeves and company:)) I loved the fact that he was a truly committed family man, so when my dad wanted Cal Ripken Jr. to be a fundamental part of RALLY CAPS, that was okay with me. Cal Ripken Jr. represents the American work ethic, he went out day after day, game after game and did his job. My son has been working since he was 12 months old through frustration and difficulties to learn to speak and comprehend language.
Jordan is MY hero.
In this video, Ripken speaks "The Language of Baseball" to a group of Chinese children who do not speak or understand English. Ripken gets down on his hands and knees to indicate and model for them the appropriate techniques in order to overcome the language barrier.
My dad has done the same thing with Jordan. When Jordan was younger and could not speak English, my dad would take him to the park and pitch him a few balls, a hit might as well have been a sentence. As Jordan got older, they would go to the batting cage, sometimes my dad would steal Jordan's coins to have more turns than him (just kidding..kind of)and they would laugh about that and communicate. Every summer we go to Baltimore and my step-father Eddie and Jordan bond by playing baseball in the backyard, shagging flyballs and working on his batting stance. Last summer, Jordan attended a baseball camp in Baltimore, his first time in a group situation with only English-speaking kids. By the end of camp, his teammates were screaming in Italian, "Non tirare la mazza!" (Don't throw the bat:)) and Jordan was yelling in English, "I got it!"
It's just amazing how a ball, a bat and a glove can provide a bridge for better communication.
Thursday, November 22, 2007
PILGRIMS AND PIONEERS
Feeling kind of nostalgic today, missing my family...so what I really need is an excellent video of a very special person, Rachel Chaikof, a pioneer cochlear implantee AND a designer extraordinaire of the Pediatric Cochlear Implant Circle COCHLEAR IMPLANT AWARENESS CAMPAIGN. I'll let Rachel do what she does best...speak for herself.
Entry taken from Rachel and Jessica's (See my blog from November 1st -Jessica)Blog
September 19th, 2007
"Just wait and see when your kids become 18 years old or finish high school. I was one of them. I grew up oral and I often was told that I am hard of hearing (which is not true) because I speak fairly well. Today I have considered myself as a Pride Deaf woman. I wish that I had learned ASL many years ago. I also wish I had made alot of Deaf/HH friends back then. I respect you that you've chosen your kids to learn to speak and many more. I am not surprised that you will regret this later on. Wait and see ....."
While my sister and I have been raised in the hearing world, our deafness will always be part of us, but it does not define who we are. Nearly 30 years after the revolution of the cochlear implant, the debate of using sign language is still endless. Deaf advocates are taking advantage of the cyberworld by using blogs to advocate that babies with cochlear implants and even normal hearing babies use sign language starting as newborns. They believe that deaf infants who start learning sign language as soon as possible will have better expressive language than children with cochlear implants who do not learn sign language. As a 20 year old adult, I firmly prove these deaf advocates wrong because I do not regret that I have not learned sign language. I feel that ASL is absolutely unnecessary to be part of my life as I am leading a rich life in which I hear and speak well. I graduated from high school with honors and am now a sophomore at a regular mainstream college.
Many people have been fooled into thinking that I am not deaf because my speech is clear and also because I hear well. This is to thanks to all the years that I worked in Auditory-Verbal therapy where my therapist and family taught me to listen and speak.
In my public middle school, which had a total communication program, I met a few students with cochlear implants and hearing aids, and they all signed and also spoke. Their speech was very unintelligible because they relied on sign language frequently. Most of them were also not mainstreamed and were in a self-contained classroom all day. If I relied on sign language like these students, my life would have been like theirs In that I would not have fully participated in the mainstream environment, and my speech would have been unclear and, thus, more difficult for people to understand. Also, my parents’ first language is English. Why should my parents have spent a great amount of time learning another language just to teach me for only a few years when there was an easier and valuable option of implanting me and teaching me their first language that they had a full grasp of? Also, my sister's language evaluation at age six showed her to have language that was 6 months to two years above age level.
Many deaf advocates told my parents that, when I became an adult, I would discard my CI processors, adapt to the deaf culture, and be angry at my parents. As a 20 year old adult, I am happily living in the hearing world with bilateral cochlear implants and would never discard my implants in the future. I am bilingual, but not in English and ASL, but rather I am fluent in both French and English. I listen to my iPod on a regular basis and attend movies in theaters with my normal hearing friends, fully enjoying the sounds of the movies.
My deafness will still be part of me as I have attended several cochlear implant conventions where I met other people with cochlear implants also raised with the Auditory-Verbal approach. We share our fortunate paths of being raised with this wonderful technology, the cochlear implant, by telling each other of our achievements that could not have happened without our cochlear implants and also share some small obstacles that we’ve had, such as not understanding people who mumble. At the conventions, we hung out in our hotel rooms or in the lobby and TALKED to each other until past midnight! These friends are my deaf community, but my main community is the entire world.
As the mother of a deaf child who wears a cochlear implant, I am constantly looking for role models. Rachel and Jessica are two exceptional young women with two strong inspirational voices and one helluva motivated and devoted mother!
Entry taken from Rachel and Jessica's (See my blog from November 1st -Jessica)Blog
September 19th, 2007
"Just wait and see when your kids become 18 years old or finish high school. I was one of them. I grew up oral and I often was told that I am hard of hearing (which is not true) because I speak fairly well. Today I have considered myself as a Pride Deaf woman. I wish that I had learned ASL many years ago. I also wish I had made alot of Deaf/HH friends back then. I respect you that you've chosen your kids to learn to speak and many more. I am not surprised that you will regret this later on. Wait and see ....."
While my sister and I have been raised in the hearing world, our deafness will always be part of us, but it does not define who we are. Nearly 30 years after the revolution of the cochlear implant, the debate of using sign language is still endless. Deaf advocates are taking advantage of the cyberworld by using blogs to advocate that babies with cochlear implants and even normal hearing babies use sign language starting as newborns. They believe that deaf infants who start learning sign language as soon as possible will have better expressive language than children with cochlear implants who do not learn sign language. As a 20 year old adult, I firmly prove these deaf advocates wrong because I do not regret that I have not learned sign language. I feel that ASL is absolutely unnecessary to be part of my life as I am leading a rich life in which I hear and speak well. I graduated from high school with honors and am now a sophomore at a regular mainstream college.
Many people have been fooled into thinking that I am not deaf because my speech is clear and also because I hear well. This is to thanks to all the years that I worked in Auditory-Verbal therapy where my therapist and family taught me to listen and speak.
In my public middle school, which had a total communication program, I met a few students with cochlear implants and hearing aids, and they all signed and also spoke. Their speech was very unintelligible because they relied on sign language frequently. Most of them were also not mainstreamed and were in a self-contained classroom all day. If I relied on sign language like these students, my life would have been like theirs In that I would not have fully participated in the mainstream environment, and my speech would have been unclear and, thus, more difficult for people to understand. Also, my parents’ first language is English. Why should my parents have spent a great amount of time learning another language just to teach me for only a few years when there was an easier and valuable option of implanting me and teaching me their first language that they had a full grasp of? Also, my sister's language evaluation at age six showed her to have language that was 6 months to two years above age level.
Many deaf advocates told my parents that, when I became an adult, I would discard my CI processors, adapt to the deaf culture, and be angry at my parents. As a 20 year old adult, I am happily living in the hearing world with bilateral cochlear implants and would never discard my implants in the future. I am bilingual, but not in English and ASL, but rather I am fluent in both French and English. I listen to my iPod on a regular basis and attend movies in theaters with my normal hearing friends, fully enjoying the sounds of the movies.
My deafness will still be part of me as I have attended several cochlear implant conventions where I met other people with cochlear implants also raised with the Auditory-Verbal approach. We share our fortunate paths of being raised with this wonderful technology, the cochlear implant, by telling each other of our achievements that could not have happened without our cochlear implants and also share some small obstacles that we’ve had, such as not understanding people who mumble. At the conventions, we hung out in our hotel rooms or in the lobby and TALKED to each other until past midnight! These friends are my deaf community, but my main community is the entire world.
As the mother of a deaf child who wears a cochlear implant, I am constantly looking for role models. Rachel and Jessica are two exceptional young women with two strong inspirational voices and one helluva motivated and devoted mother!
Wednesday, November 21, 2007
HAPPY THANKSGIVING!!!
Well, another Thanksgiving without a turkey, cranberry sauce, stuffing or pumpkin pie...no day off of work or long weekend. Geeze it's depressing living in Tuscany sometimes! I have managed to find something resembling a turkey only it's in the form of a roast...doesn't quite cut it, however, my oven isn't really big enough to cook a whole roasted turkey...not that I could because I got married and left the States before I even learned how to bake one. Last year I even went so far as to FORGET Thanksgiving! Not this year, with all of the people on the support groups spreading inspirational messages of gratitude and thanks. It's those life crises that lead us to appreciate all that is beautiful in our lives. We are each at a different point in our journey and family assumes an entirely different meaning when we are tested by life. I have a lot to be thankful for this year, but I miss my family and dinners at Aunt Janice's house. Before I start bawling and really feeling sorry for myself, I think I'll forward this post by a mom named Karen who has just created a WALK TO RAISE COCHLEAR IMPLANT AWARENESS, CHECK OUT HER WEBSITE!! YOU GO GIRL!
Live, Love, Hear was created to help raise COCHLEAR IMPLANT AWARENESS in the Berks and Lehigh County area in Pennsylvania.
Our mission is to help raise funds for the Cochlear Implant Awareness Foundation. This foundation provides information, resources, support and financial assistance to persons who may be eligible for this life changing technology.
I'm Invisible
It all began to make sense, the blank stares, the lack of response, the way one
of the kids will walk into the room while I'm on the phone and ask to be taken
to the store. Inside I'm thinking, "Can't you see I'm on the phone?" Obviously
not; no one can see if I'm on the phone, or cooking, or sweeping the floor, or
even standing on my head in the corner, because no one can see me at all. I'm
invisible. The invisible Mom.
Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie
this? Can you open this?
Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to
ask, "What time is it?" I'm a satellite guide to answer, "What number is the
Disney Channel?" I'm a car to order, "Right around 5:30, please."
I was certain that these were the hands that once held books and the eyes that
studied history and the mind that graduated summa cum laude - but now they had
disappeared into the peanut butter, never to be seen again. She's going, she's
going, she's gone!
One night, a group of us were having dinner, celebrating the return of a friend
from England. Janice had just gotten back from a fabulous trip, and she was
going on and on about the hotel she stayed in. I was sitting there, looking
around at the others all put together so well. It was hard not to compare and
feel sorry for myself as I looked down at my out-of-style dress; it was the only
thing I could find that was clean. My unwashed hair was pulled up in a hair clip
and I was afraid I could actually smell peanut butter in it. I was feeling
pretty pathet ic, when Janice turned to me with a beautifully wrapped package,
and said, "I brought you this." It was a book on the great cathedrals of Europe.
I wasn't exactly sure why she'd given it to me until I read her inscription: "To
Charlotte, with admiration for the greatness of what you are building when no
one sees."
In the days ahead I would read - no, devour - the book. And I would discover
what would become for me, four life-changing truths, after which I could pattern
my work: No one can say who built the great cathedrals - we have no record of
their names. These builders gave their whole lives for a work they would never
see finished. They made great sacrifices and expected no credit. The passion of
their building was fueled by their faith that the eyes of God saw everything.
A legendary story in the book told of a rich man who came to visit the cathedral
while it was being built, and he saw a workman carving a tiny bird on the inside
of a beam. He was puzzled and asked the man, "Why are you spending so much time
carving that bird into a beam that will be covered by the roof? No one will ever
see it." And the workman replied, "Because God sees."
I closed the book, feeling the missing piece fall into place. It was almost as
if I heard God whispering to me, "I see you, Charlotte. I see the sacrifices you
make every day, even when no one around you does. No act of kindness you've
done, no sequin you've sewn on, no cupcake you've baked, is too small for me to
notice and smile over. You are building a great cathedral, but you can't see
right now what it will become."
At times, my invisibility feels like an affliction. But it is not a disease that
is erasing my life. It is the cure for the disease of my own self-centeredness.
It is the antidote to my strong, stubborn pride. I keep the right perspective
when I see myself as a great builder. As one of the people who show up at a job
that they will never see finished, to work on something that their name will
never be on. The writer of the book went so far as to say that no cathedrals
could ever be built in our lifetime because there are so few people willing to
sacrifice to that degree.
When I really think about it, I don't want my son to tell the friend he's
bringing home from college for Thanksgiving , "My mom gets up at 4 in the
morning and bakes homemade pies, and then she hand bastes a turkey for three
hours and presses all the linens for the table." That would mean I'd built a
shrine or a monument to myself. I just want him to want to come home. And then,
if there is anything more to say to his friend, to add, "You're gonna love it
there."
As mothers, we are building great cathedrals. We cannot be seen if we're doing
it right. And one day, it is very possible that the world will marvel, not only
at what we have built, but at the beauty that has been added to the world by the
sacrifices of invisible women.
Great Job, MOM!
Share this with all the Invisible Moms you know ..... I just did.
Live, Love, Hear was created to help raise COCHLEAR IMPLANT AWARENESS in the Berks and Lehigh County area in Pennsylvania.
Our mission is to help raise funds for the Cochlear Implant Awareness Foundation. This foundation provides information, resources, support and financial assistance to persons who may be eligible for this life changing technology.
I'm Invisible
It all began to make sense, the blank stares, the lack of response, the way one
of the kids will walk into the room while I'm on the phone and ask to be taken
to the store. Inside I'm thinking, "Can't you see I'm on the phone?" Obviously
not; no one can see if I'm on the phone, or cooking, or sweeping the floor, or
even standing on my head in the corner, because no one can see me at all. I'm
invisible. The invisible Mom.
Some days I am only a pair of hands, nothing more: Can you fix this? Can you tie
this? Can you open this?
Some days I'm not a pair of hands; I'm not even a human being. I'm a clock to
ask, "What time is it?" I'm a satellite guide to answer, "What number is the
Disney Channel?" I'm a car to order, "Right around 5:30, please."
I was certain that these were the hands that once held books and the eyes that
studied history and the mind that graduated summa cum laude - but now they had
disappeared into the peanut butter, never to be seen again. She's going, she's
going, she's gone!
One night, a group of us were having dinner, celebrating the return of a friend
from England. Janice had just gotten back from a fabulous trip, and she was
going on and on about the hotel she stayed in. I was sitting there, looking
around at the others all put together so well. It was hard not to compare and
feel sorry for myself as I looked down at my out-of-style dress; it was the only
thing I could find that was clean. My unwashed hair was pulled up in a hair clip
and I was afraid I could actually smell peanut butter in it. I was feeling
pretty pathet ic, when Janice turned to me with a beautifully wrapped package,
and said, "I brought you this." It was a book on the great cathedrals of Europe.
I wasn't exactly sure why she'd given it to me until I read her inscription: "To
Charlotte, with admiration for the greatness of what you are building when no
one sees."
In the days ahead I would read - no, devour - the book. And I would discover
what would become for me, four life-changing truths, after which I could pattern
my work: No one can say who built the great cathedrals - we have no record of
their names. These builders gave their whole lives for a work they would never
see finished. They made great sacrifices and expected no credit. The passion of
their building was fueled by their faith that the eyes of God saw everything.
A legendary story in the book told of a rich man who came to visit the cathedral
while it was being built, and he saw a workman carving a tiny bird on the inside
of a beam. He was puzzled and asked the man, "Why are you spending so much time
carving that bird into a beam that will be covered by the roof? No one will ever
see it." And the workman replied, "Because God sees."
I closed the book, feeling the missing piece fall into place. It was almost as
if I heard God whispering to me, "I see you, Charlotte. I see the sacrifices you
make every day, even when no one around you does. No act of kindness you've
done, no sequin you've sewn on, no cupcake you've baked, is too small for me to
notice and smile over. You are building a great cathedral, but you can't see
right now what it will become."
At times, my invisibility feels like an affliction. But it is not a disease that
is erasing my life. It is the cure for the disease of my own self-centeredness.
It is the antidote to my strong, stubborn pride. I keep the right perspective
when I see myself as a great builder. As one of the people who show up at a job
that they will never see finished, to work on something that their name will
never be on. The writer of the book went so far as to say that no cathedrals
could ever be built in our lifetime because there are so few people willing to
sacrifice to that degree.
When I really think about it, I don't want my son to tell the friend he's
bringing home from college for Thanksgiving , "My mom gets up at 4 in the
morning and bakes homemade pies, and then she hand bastes a turkey for three
hours and presses all the linens for the table." That would mean I'd built a
shrine or a monument to myself. I just want him to want to come home. And then,
if there is anything more to say to his friend, to add, "You're gonna love it
there."
As mothers, we are building great cathedrals. We cannot be seen if we're doing
it right. And one day, it is very possible that the world will marvel, not only
at what we have built, but at the beauty that has been added to the world by the
sacrifices of invisible women.
Great Job, MOM!
Share this with all the Invisible Moms you know ..... I just did.
Tuesday, November 20, 2007
CAUSES OF HEARING LOSS AND AUDITORY NEUROPATHY...VIDEO ON CUED SPEECH
Causes of Deafness (lifted from About.com:Deafness...love Jamie Berke, strong, passionate, intelligent voice, check out her blog!)
What Makes People Deaf
Acoustic Neurinoma
Basic facts on acoustic neurinoma, a lesser known cause of hearing loss.
Autoimmune Inner Ear Disease (AIED)
Autoimmune Inner Ear Disease is examined in this feature. Forum members also discuss AIED.
Auditory Neuropathy
Auditory Neuropathy, a can-hear/can't hear condition.
Bombing and Deafness
After the war ends, audiologists may be in high demand.
CHARGE Syndrome A look at this relatively rare syndrome, and the resources available to parents of diagnosed children.
Cytomegalovirus and Deafness
Congenital cytomegalovirus is one of the more common causes of hearing loss, and is almost as damaging as rubella.
Connexin 26
If you are in a family with hereditary hearing loss, or have a deaf child and don't know what caused it, it could very well be due to the Connexin 26 mutation.
Enlarged Vestibular Aqueduct Syndrome
Enlarged vestibular aqueduct syndrome, also known as LVAS, is a fairly common condition causing hearing loss.
Genetics and Hearing Loss
Genetic research into deafness and hearing loss is often in the news these days, with exciting progress being made. This article refers to useful resources for learning more about genetic/hereditary hearing loss.
Glue Ear - Common Cause of Hearing Loss
A look at this fairly common cause of temporary conductive hearing loss.
Goldenhar Syndrome
A look at this fairly rare facial disorder, which has hearing loss as one of its many characteristics.
Hair Cell Regeneration
Is a cure for deafness possible in our lifetimes? Guest article on one promising technology, hair cell regeneration.
Meniere's Disease
Meniere's Disease, which includes hearing loss among its symptoms, is not a fun thing to live with, but there is no shortage of people to turn to for support.
Meningitis
A look at this deadly illness, that if survived, often deafens the victim.
Mondini Syndrome
A malformation of the cochlea, causing hearing losses of varying degrees.
Growing Up Deaf - Rubella
Otosclerosis This hearing loss-related condition can be treated with surgery.
Ototoxicity
Before the doctor prescribes a drug for you, you might want to double-check to make sure the drug is not ototoxic, in order to protect whatever hearing you have left.
Presbycusis (or Age-Related Hearing Loss)
As we age, we are at greater risk for hearing loss.
Sudden Deafness
Not everyone is born with hearing impairment - sometimes it happens all of a sudden, without warning.
Tinnitus - Problem Associated with Hearing Loss
Ringing in the ears.
TMJ and Hearing Loss
TMJ is one of the lesser-known causes of hearing loss.
Treacher Collins Syndrome
Relatively rare disorder that causes both hearing loss and facial disfigurement.
Usher Syndrome - Deafblindness Cause
This syndrome can cause a person to be deaf and/or can cause a loss of vision.
Waardenburg Syndrome - Cause of Hearing Loss
One of the better-known genetic causes of deafness.
What I was interested in learning more about was AUDITORY NEUROPATHY: Auditory neuropathy is a condition in which the cochlea appears to function normally, but there is a problem with the nerves so that sound can not be normally processed and the auditory brainstem response (ABR) is missing or abnormal. A child with auditory neuropathy may appear to hear one day and not hear the next. This can frustrate parents and make a definite diagnosis more difficult.
I've read posts from a variety of parents on my other favorite yahoo support group LISTEN-UP and wanted to learn more about it, so I checked my deaf Bible site, about.com:deafness and this was the definition. I also learned that there is a support group on yahoogroups.com specifically for this type of deafness, to subscribe click here. I also found the following information in regard to Auditory Neuropathy and Cochlear Implants, I was just curious because I know that cochlear implants are not a solution for all degrees and types of deafness:
Auditory Neuropathy
Auditory neuropathy is not a type of hearing loss but a dysfunction in the hearing system in which the auditory nerves do not respond to sound in a coordinated fashion.
Symptoms seen in auditory neuropathy include the following:
Hearing test suggests a mild to moderate hearing loss
Absent acoustic reflexes
Absent or severely abnormal auditory brainstem responses
Word recognition ability poorer than expected for the amount of pure tone hearing loss
However, a major distinguishing feature is that in these patients otoacoustic emissions are present suggesting near normal cochlea function.
In auditory neuropathy the cochlea hair cells are responding to sound, but the auditory nerve does not transmit the signals to the brain in a coordinated, useful fashion. Since the cochlea is working in these patients a hearing aid is not appropriate since the ear does not need more volume of sound. In severe cases of auditory neuropathy a cochlear implant can be effective in synchronizing the auditory signal.
Check out Karen's Blog that features an entry on a child named Matthew who has Auditory Neuropathy and has just undergone cochlear implant surgery.
To read more about Matthew, click here to read an article from the Hands and Voices publication THE COMMUNICATOR.
THIS VIDEO DISCUSSES CUED SPEECH AND GIVES AN EXAMPLE OF HOW THE USE OF CUED SPEECH HAS HELPED A CHILD WITH AUDITORY NEUROPATHY...
INTERESTING AND EDUCATIONAL (LEARNING SOMETHING NEW EVERY DAY!)
What Makes People Deaf
Acoustic Neurinoma
Basic facts on acoustic neurinoma, a lesser known cause of hearing loss.
Autoimmune Inner Ear Disease (AIED)
Autoimmune Inner Ear Disease is examined in this feature. Forum members also discuss AIED.
Auditory Neuropathy
Auditory Neuropathy, a can-hear/can't hear condition.
Bombing and Deafness
After the war ends, audiologists may be in high demand.
CHARGE Syndrome A look at this relatively rare syndrome, and the resources available to parents of diagnosed children.
Cytomegalovirus and Deafness
Congenital cytomegalovirus is one of the more common causes of hearing loss, and is almost as damaging as rubella.
Connexin 26
If you are in a family with hereditary hearing loss, or have a deaf child and don't know what caused it, it could very well be due to the Connexin 26 mutation.
Enlarged Vestibular Aqueduct Syndrome
Enlarged vestibular aqueduct syndrome, also known as LVAS, is a fairly common condition causing hearing loss.
Genetics and Hearing Loss
Genetic research into deafness and hearing loss is often in the news these days, with exciting progress being made. This article refers to useful resources for learning more about genetic/hereditary hearing loss.
Glue Ear - Common Cause of Hearing Loss
A look at this fairly common cause of temporary conductive hearing loss.
Goldenhar Syndrome
A look at this fairly rare facial disorder, which has hearing loss as one of its many characteristics.
Hair Cell Regeneration
Is a cure for deafness possible in our lifetimes? Guest article on one promising technology, hair cell regeneration.
Meniere's Disease
Meniere's Disease, which includes hearing loss among its symptoms, is not a fun thing to live with, but there is no shortage of people to turn to for support.
Meningitis
A look at this deadly illness, that if survived, often deafens the victim.
Mondini Syndrome
A malformation of the cochlea, causing hearing losses of varying degrees.
Growing Up Deaf - Rubella
Otosclerosis This hearing loss-related condition can be treated with surgery.
Ototoxicity
Before the doctor prescribes a drug for you, you might want to double-check to make sure the drug is not ototoxic, in order to protect whatever hearing you have left.
Presbycusis (or Age-Related Hearing Loss)
As we age, we are at greater risk for hearing loss.
Sudden Deafness
Not everyone is born with hearing impairment - sometimes it happens all of a sudden, without warning.
Tinnitus - Problem Associated with Hearing Loss
Ringing in the ears.
TMJ and Hearing Loss
TMJ is one of the lesser-known causes of hearing loss.
Treacher Collins Syndrome
Relatively rare disorder that causes both hearing loss and facial disfigurement.
Usher Syndrome - Deafblindness Cause
This syndrome can cause a person to be deaf and/or can cause a loss of vision.
Waardenburg Syndrome - Cause of Hearing Loss
One of the better-known genetic causes of deafness.
What I was interested in learning more about was AUDITORY NEUROPATHY: Auditory neuropathy is a condition in which the cochlea appears to function normally, but there is a problem with the nerves so that sound can not be normally processed and the auditory brainstem response (ABR) is missing or abnormal. A child with auditory neuropathy may appear to hear one day and not hear the next. This can frustrate parents and make a definite diagnosis more difficult.
I've read posts from a variety of parents on my other favorite yahoo support group LISTEN-UP and wanted to learn more about it, so I checked my deaf Bible site, about.com:deafness and this was the definition. I also learned that there is a support group on yahoogroups.com specifically for this type of deafness, to subscribe click here. I also found the following information in regard to Auditory Neuropathy and Cochlear Implants, I was just curious because I know that cochlear implants are not a solution for all degrees and types of deafness:
Auditory Neuropathy
Auditory neuropathy is not a type of hearing loss but a dysfunction in the hearing system in which the auditory nerves do not respond to sound in a coordinated fashion.
Symptoms seen in auditory neuropathy include the following:
Hearing test suggests a mild to moderate hearing loss
Absent acoustic reflexes
Absent or severely abnormal auditory brainstem responses
Word recognition ability poorer than expected for the amount of pure tone hearing loss
However, a major distinguishing feature is that in these patients otoacoustic emissions are present suggesting near normal cochlea function.
In auditory neuropathy the cochlea hair cells are responding to sound, but the auditory nerve does not transmit the signals to the brain in a coordinated, useful fashion. Since the cochlea is working in these patients a hearing aid is not appropriate since the ear does not need more volume of sound. In severe cases of auditory neuropathy a cochlear implant can be effective in synchronizing the auditory signal.
Check out Karen's Blog that features an entry on a child named Matthew who has Auditory Neuropathy and has just undergone cochlear implant surgery.
To read more about Matthew, click here to read an article from the Hands and Voices publication THE COMMUNICATOR.
THIS VIDEO DISCUSSES CUED SPEECH AND GIVES AN EXAMPLE OF HOW THE USE OF CUED SPEECH HAS HELPED A CHILD WITH AUDITORY NEUROPATHY...
INTERESTING AND EDUCATIONAL (LEARNING SOMETHING NEW EVERY DAY!)
Monday, November 19, 2007
C I AM A PARENT AND A TEACHER...
OOOOOOOOh, yesterday, Luca took me to Venturina for my birthday present: a massage and relaxing day at the thermal waters dayspa of Calidario. The massage was heavenly, the water cold, but it was soooooo relaxing. I'm in this relaxation mode that will last about another half an hour before my next lesson, so when I found this advertisement, I thought I'd post it.
The ad is for the Hear and Say Center of Australia.
The Hear and Say Centre is one of the leading Paediatric Auditory-Verbal and cochlear implant centres in the world, teaching children who are deaf or hearing impaired to listen and speak since 1992.
The Centre aims for its children to achieve speech and language in the normal range for their age by six years of age giving them the opportunity for a mainstream education, employment of choice and social integration with the hearing world.
The Centre is a charity based in Brisbane with regional centres on the Gold Coast, Sunshine Coast, Cairns and Dalby with an Outreach program for rural and remote children. It is a family based program recognizing the parent as the natural language teacher of the child.
I appreciate two aspects of what I've learned in the past five minutes about this center: first of all, I like that the ad has the children speaking and saying, "We are deaf," and secondly, I love that the Center recognizes the "parent as the natural language teacher of the child."
Sometimes, this great responsibility of becoming both teacher and parent can be overwhelming. Parents need to realize that teaching a deaf child to speak occurs over a prolonged period of time and that sometimes, it's okay to take a little break just to go to the gym.
The Pediatric Cochlear Implant Circle was founded by two women, one of whom is Australian. Naomi's "swings and roundabouts" post sums it all up rather eloquently :)...
These were her words to her group...
Hi all
To all you amazing wonderful moms and dads on this list - don't be soo hard on
yourselves! As someone once told me this is not a sprint it is a marathon...you need to pace yourselves, if you go too hard too early you will burn yourselves out.
This is even more true for those now diagnosed as tiny babies, for goodness sake
looking after a baby is tiring enough and now we are adding in working on
hearing/listening skills - no wonder you are feeling just a little worn out.
Yes it is very important to work on these skills for your little ones, you know
that...but you know if one day you are just soooo tired putting one foot in
front of the other is all you can do, then just do that....the world won't stop
turning and 10 years from now you are not going to be saying "if only on that
one day in November I focused more on x's listening skills, than I did on
myself"....at the end of the day, having one day off to just "be" isn't going to
make a big deal of difference in the scheme of things.
Keep a little notebook of really easy to understand things you are working on
like colours or "up/down" or whatever it is....then when other people come
around to visit - rope them in!! I mean that in the nicest possible way : - )
Most people want to understand and want to help, give them the chance, what is
that saying it takes a village to raise a child....I was truly blessed, our AVT
used to come to our house and my mom used to come over and sit and watch our
sessions so she always knew what we were working on! But you get what I mean
here right?
This journey has highs and lows all the way through, go crazy and celebrate the
highs but don't beat yourself up too much on the lows either. There are good and
not so good teachers whether your kids have a hearing loss or not and some
people "get it" and some never will. Remember they are the expert in that
classroom, the group dynamics and educational pedagogy. YOU are the expert when it comes to your child, you know them best! Grab that knowledge and work with the "professionals" as an equal, treat them with the respect that you expect them to treat you with, and don't let them intimidate you because you don't have letters after your name.It is all about swings and roundabouts, some days are good, some not so good. The road is a long one but those of us with older kids will tell you, the journey, the hard work, oh man oh man it is unbelievably worth it. I can't tell you how my heart feels to bursting when I watch my guy in action, one of the "gang", one of the successful kids in his school/with his friends.
Hang in there, and most of all don't be too hard on yourselves!!
Naomi
The ad is for the Hear and Say Center of Australia.
The Hear and Say Centre is one of the leading Paediatric Auditory-Verbal and cochlear implant centres in the world, teaching children who are deaf or hearing impaired to listen and speak since 1992.
The Centre aims for its children to achieve speech and language in the normal range for their age by six years of age giving them the opportunity for a mainstream education, employment of choice and social integration with the hearing world.
The Centre is a charity based in Brisbane with regional centres on the Gold Coast, Sunshine Coast, Cairns and Dalby with an Outreach program for rural and remote children. It is a family based program recognizing the parent as the natural language teacher of the child.
I appreciate two aspects of what I've learned in the past five minutes about this center: first of all, I like that the ad has the children speaking and saying, "We are deaf," and secondly, I love that the Center recognizes the "parent as the natural language teacher of the child."
Sometimes, this great responsibility of becoming both teacher and parent can be overwhelming. Parents need to realize that teaching a deaf child to speak occurs over a prolonged period of time and that sometimes, it's okay to take a little break just to go to the gym.
The Pediatric Cochlear Implant Circle was founded by two women, one of whom is Australian. Naomi's "swings and roundabouts" post sums it all up rather eloquently :)...
These were her words to her group...
Hi all
To all you amazing wonderful moms and dads on this list - don't be soo hard on
yourselves! As someone once told me this is not a sprint it is a marathon...you need to pace yourselves, if you go too hard too early you will burn yourselves out.
This is even more true for those now diagnosed as tiny babies, for goodness sake
looking after a baby is tiring enough and now we are adding in working on
hearing/listening skills - no wonder you are feeling just a little worn out.
Yes it is very important to work on these skills for your little ones, you know
that...but you know if one day you are just soooo tired putting one foot in
front of the other is all you can do, then just do that....the world won't stop
turning and 10 years from now you are not going to be saying "if only on that
one day in November I focused more on x's listening skills, than I did on
myself"....at the end of the day, having one day off to just "be" isn't going to
make a big deal of difference in the scheme of things.
Keep a little notebook of really easy to understand things you are working on
like colours or "up/down" or whatever it is....then when other people come
around to visit - rope them in!! I mean that in the nicest possible way : - )
Most people want to understand and want to help, give them the chance, what is
that saying it takes a village to raise a child....I was truly blessed, our AVT
used to come to our house and my mom used to come over and sit and watch our
sessions so she always knew what we were working on! But you get what I mean
here right?
This journey has highs and lows all the way through, go crazy and celebrate the
highs but don't beat yourself up too much on the lows either. There are good and
not so good teachers whether your kids have a hearing loss or not and some
people "get it" and some never will. Remember they are the expert in that
classroom, the group dynamics and educational pedagogy. YOU are the expert when it comes to your child, you know them best! Grab that knowledge and work with the "professionals" as an equal, treat them with the respect that you expect them to treat you with, and don't let them intimidate you because you don't have letters after your name.It is all about swings and roundabouts, some days are good, some not so good. The road is a long one but those of us with older kids will tell you, the journey, the hard work, oh man oh man it is unbelievably worth it. I can't tell you how my heart feels to bursting when I watch my guy in action, one of the "gang", one of the successful kids in his school/with his friends.
Hang in there, and most of all don't be too hard on yourselves!!
Naomi
Sunday, November 18, 2007
FOR THOSE CONSIDERING BILATERAL COCHLEAR IMPLANTS...
I have blog addiction, I'm becoming addicted to my own blog. I did not post yesterday because I had dinner for 16 at my house last night to celebrate my thoroughly lived 36 years and was too exhausted-in-a-good-way to write. Thank goodness the company was great and my hubbie got a cake(una meringata, the best) from GIANNINI, because I am a REALLY BAD cook. Although, the important thing was that there was plenty of MORELLINO DI SCANSANO and my American friend Rhonda made a mean batch of cocktails. She is the only one I know who manages to find cranberry juice in this country, I have yet to discover her secret. The kids were quaranteened upstairs and played videogames for like four hours, I'm such a bad mother, but the adults were left in peace to eat, drink and be goofy. A fun time was had by all...
Now to the Video du jour. I received this informative testimonial-type video on bilateral implants about five days ago. Bethany, who I don't know, gives an honest account of her experience with bilateral implants. More and more families are choosing to simultaneously bilaterally implant their babies with a profound hearing loss, while others who have only one implant are beginning to consider going for the second one. Jordan only has one and I think I've only recently managed to recover from the whole ordeal that began three years ago. It is not an easy decision to opt for the first implant, the second should be a no-brainer based on how well the first works, but I am just not ready to go through the mental anguish of a surgery again. Bethany explains her experience in a language that teenagers and parents considering bilateral implantation for their children will find helpful and...inspirational.
GO BETHANY!!!
Now to the Video du jour. I received this informative testimonial-type video on bilateral implants about five days ago. Bethany, who I don't know, gives an honest account of her experience with bilateral implants. More and more families are choosing to simultaneously bilaterally implant their babies with a profound hearing loss, while others who have only one implant are beginning to consider going for the second one. Jordan only has one and I think I've only recently managed to recover from the whole ordeal that began three years ago. It is not an easy decision to opt for the first implant, the second should be a no-brainer based on how well the first works, but I am just not ready to go through the mental anguish of a surgery again. Bethany explains her experience in a language that teenagers and parents considering bilateral implantation for their children will find helpful and...inspirational.
GO BETHANY!!!
Friday, November 16, 2007
11 YEAR OLD LEAH'S INSPIRING WORDS...TO A PARENT IN NEED OF COMFORT
When a parent of a newly diagnosed baby needed words of comfort on one of my support groups, 11 year old Leah pushed her mother aside and responded to this fragile parent. This is what she said...
Well, I'd like to offer you some words of
assistance and reassurance.
I, myself, am deaf, and I would like to tell
you this; being deaf isn't the end of the world. Your
child will develop a personality of his own over
time,
and you should be proud.
Your child should not regret his profound loss of
hearing, because it makes him special, and it
makes him, him. The operation's aftermath will not
totally change your life. Afterwards, you will probably
have to spend more time doing speech with him at home,
or have a speech therapist at school, but that will be the only difference.
He or she will still go to school,
learn,
go to middle school and High school,
and college,
get married,
etc.
Like any other person,
he will have to go through trials and tribulations to do this, along with
being
deaf.
But
if you teach him to look at the bright
side of being deaf, he will do excellently.
A person with hearing loss
should not attempt to
hide
this, or be embarrassed about it;
if someone asked
your child what he was wearing on his head, he should
answer with pride, `It helps me hear.'
Leah age 11 implanted at age 2 and the second
implant during the summer in July of this year.
Well, I'd like to offer you some words of
assistance and reassurance.
I, myself, am deaf, and I would like to tell
you this; being deaf isn't the end of the world. Your
child will develop a personality of his own over
time,
and you should be proud.
Your child should not regret his profound loss of
hearing, because it makes him special, and it
makes him, him. The operation's aftermath will not
totally change your life. Afterwards, you will probably
have to spend more time doing speech with him at home,
or have a speech therapist at school, but that will be the only difference.
He or she will still go to school,
learn,
go to middle school and High school,
and college,
get married,
etc.
Like any other person,
he will have to go through trials and tribulations to do this, along with
being
deaf.
But
if you teach him to look at the bright
side of being deaf, he will do excellently.
A person with hearing loss
should not attempt to
hide
this, or be embarrassed about it;
if someone asked
your child what he was wearing on his head, he should
answer with pride, `It helps me hear.'
Leah age 11 implanted at age 2 and the second
implant during the summer in July of this year.
Thursday, November 15, 2007
KEIRA'S VIDEOS PLANTED THE SEED...
A couple of months ago Keith, Keira's FATHER posted the two videos you will see below on the PEDIATRIC COCHLEAR IMPLANT CIRCLE. Two things struck me about his post, first that he is an active FATHER (like my own hot hubbie), and second I was deeply touched that he had chosen to share such a personal part of their family's life. The process of Auditory-Verbal Therapy is a highly emotional journey. Trying to help a deaf child learn to speak as rewarding as it can be in the end is a heart-wrenching, strenuous, frustrating, and agonizing trip of highs and lows. A parent must be completely involved in the process by teaching lessons at home and rendering even the most inanimate of objects a lesson in speech and language. The child begins working as a baby, sitting in a high chair, repeating, indicating, processing four times a week plus hours and hours at home- total concentration on helping the child understand his world and assisting him to find his voice to be understood.
Jordan has a very frustrating character, he is STUBBORN! This has both helped him and hindered him; he fought his therapists every single lesson until he realized at age 8 that they were trying to help him find his voice and at age eight, he realized that he wanted a voice and needed one. So, he began to collaborate. He just came home from school and announced that his class voted him CLASS REPRESENTATIVE -I am not only proud of him, I am happy for him. For every low, there is a super-high, we concentrate on the highs here in this family and use our lows as teaching moments to grow.
KEITH WRITES:
*******
I would like to introduce Keira now 2 a Freedom user(one ear) since April 23, 2007. We found out that Keira was deaf in September of 2006 after an ABR test was done. Before this the wife heard about cochlear implants from some show she saw on TV. So we started looking into it and decided that this was what we wanted for Keira. Up to this point, Keira had started signing and was getting pretty good at it in a short period of time. But months after she was implanted, she slowly stopped signing and started using some words. Or what sounded like words...mmmi for milk, wawawa for water and a couple of others. Now almost 7 months later she tells me NO or stop(when the music stops) but the best part is she says "Daddy (ady) and Mommy." Please watch the videos and you can see her grow.
KEITH (FATHER OF KEIRA, 2 YRS.OLD)
INTRODUCING KEIRA!!! THESE ARE THE VIDEOS THAT PLANTED THE SEED FOR A BLOG THAT LETS OUR KIDS DO THE TALKING (PARENTS ARE SO OVERRATED:)))...
Jordan has a very frustrating character, he is STUBBORN! This has both helped him and hindered him; he fought his therapists every single lesson until he realized at age 8 that they were trying to help him find his voice and at age eight, he realized that he wanted a voice and needed one. So, he began to collaborate. He just came home from school and announced that his class voted him CLASS REPRESENTATIVE -I am not only proud of him, I am happy for him. For every low, there is a super-high, we concentrate on the highs here in this family and use our lows as teaching moments to grow.
KEITH WRITES:
*******
I would like to introduce Keira now 2 a Freedom user(one ear) since April 23, 2007. We found out that Keira was deaf in September of 2006 after an ABR test was done. Before this the wife heard about cochlear implants from some show she saw on TV. So we started looking into it and decided that this was what we wanted for Keira. Up to this point, Keira had started signing and was getting pretty good at it in a short period of time. But months after she was implanted, she slowly stopped signing and started using some words. Or what sounded like words...mmmi for milk, wawawa for water and a couple of others. Now almost 7 months later she tells me NO or stop(when the music stops) but the best part is she says "Daddy (ady) and Mommy." Please watch the videos and you can see her grow.
KEITH (FATHER OF KEIRA, 2 YRS.OLD)
INTRODUCING KEIRA!!! THESE ARE THE VIDEOS THAT PLANTED THE SEED FOR A BLOG THAT LETS OUR KIDS DO THE TALKING (PARENTS ARE SO OVERRATED:)))...
Wednesday, November 14, 2007
GAGE AND BROOK...AND THEIR DEDICATED MOMMA!
(If you're looking for Josh Swiller's video, scroll down!)
And now for a very special family with an unbelievable story and a PHENOMENAL MOMMA!
I would like to introduce the world to VAL, hers was the first blog I ever read, she was the first person to congratulate me on RALLY CAPS when I found the Pediatric Cochlear Implant Circle, she then read the book, WENT TO HER LIBRARY AND REQUESTED THAT THEY ORDER IT SO THAT OTHER KIDS COULD HAVE ACCESS TO A BOOK WITH A CHARACTER THEY COULD IDENTIFY WITH...above and beyond the call of duty. But this isn't about me, it's about Val and her COCHLEAR KIDS - GAGE AND BROOK
(Copied from Val's blog)
INTRODUCING COCHLEAR KIDS
This blog is about hard work, dedication, and love for two people, who despite being deaf...teach us more about ourselves everyday and what's important in life...than we ever imagined. In a way they've taught us how to really hear for the first time...love Mom & Dad
GAGE AND BROOK
Here are two Cochlear Kids. They are "today's deaf children". They wear Cochlear implants, a device surgically implanted into the ear, to hear. As babies, hearing aids weren't sufficient enough with the amount of their loss to produce clear sounding speech. We upgraded to the Nucleus Freedom implants and both have great speech despite being deaf. Combined with early intervention, Children's Rehab Services of Alabama, Charity League,speech therapy, and the latest technology, our kids can attend public school and sit in a regular classroom. It really does take a village to raise a child. Gage has graduated Kindergarten and remained near the top of his class all year. He received a Smarty Pants award for his grades and was awarded Class Clown. He's doing well in first grade now and he has no speech delays and no longer needs speech therapy.Brook currently attends a wonderful special ed preschool. We expect that by age 5 she too can attend regular public school. It's hard to believe that two kids born with this disability have far surpassed our expectations. It's taken a lot of hard work and we still work at it everyday but they continue to amaze me. When a five year old asks you what does it sound like to take a bath? Or when you've burned breakfast and he wakes with a fire alarm blaring over-head and says...what's that smell?having heard nothing...it keeps everything in perspective. Sometimes you just have to look at what's ahead of you instead of looking beside you. We've been blessed and have always had people go above and beyond to ensure my children will have a bright future. Education is the only cure for ignorance.
Val educates others regarding hearing loss by volunteering for various organizations and attending workshops, meetings and fairs to distribute information on choices in deafness for the various degrees of hearing loss. She shares her ideas and experience and asks questions to other parents on a yahoo support group that she helped to create with Amy another SUPERMOM called learn2hear This is an outstanding group for parents of younger children just beginning their auditory-verbal therapy journey.
MEET GAGE AND BROOK!!!
GAGE...
AND BROOK!!!
INSPIRATIONAL FAMILY!!!!!!!!!! LIVE FOR THAT SOUTHERN DRAWLLLLLLLLL!
(PS. Val, thank you so much for all of your support!)
And now for a very special family with an unbelievable story and a PHENOMENAL MOMMA!
I would like to introduce the world to VAL, hers was the first blog I ever read, she was the first person to congratulate me on RALLY CAPS when I found the Pediatric Cochlear Implant Circle, she then read the book, WENT TO HER LIBRARY AND REQUESTED THAT THEY ORDER IT SO THAT OTHER KIDS COULD HAVE ACCESS TO A BOOK WITH A CHARACTER THEY COULD IDENTIFY WITH...above and beyond the call of duty. But this isn't about me, it's about Val and her COCHLEAR KIDS - GAGE AND BROOK
(Copied from Val's blog)
INTRODUCING COCHLEAR KIDS
This blog is about hard work, dedication, and love for two people, who despite being deaf...teach us more about ourselves everyday and what's important in life...than we ever imagined. In a way they've taught us how to really hear for the first time...love Mom & Dad
GAGE AND BROOK
Here are two Cochlear Kids. They are "today's deaf children". They wear Cochlear implants, a device surgically implanted into the ear, to hear. As babies, hearing aids weren't sufficient enough with the amount of their loss to produce clear sounding speech. We upgraded to the Nucleus Freedom implants and both have great speech despite being deaf. Combined with early intervention, Children's Rehab Services of Alabama, Charity League,speech therapy, and the latest technology, our kids can attend public school and sit in a regular classroom. It really does take a village to raise a child. Gage has graduated Kindergarten and remained near the top of his class all year. He received a Smarty Pants award for his grades and was awarded Class Clown. He's doing well in first grade now and he has no speech delays and no longer needs speech therapy.Brook currently attends a wonderful special ed preschool. We expect that by age 5 she too can attend regular public school. It's hard to believe that two kids born with this disability have far surpassed our expectations. It's taken a lot of hard work and we still work at it everyday but they continue to amaze me. When a five year old asks you what does it sound like to take a bath? Or when you've burned breakfast and he wakes with a fire alarm blaring over-head and says...what's that smell?having heard nothing...it keeps everything in perspective. Sometimes you just have to look at what's ahead of you instead of looking beside you. We've been blessed and have always had people go above and beyond to ensure my children will have a bright future. Education is the only cure for ignorance.
Val educates others regarding hearing loss by volunteering for various organizations and attending workshops, meetings and fairs to distribute information on choices in deafness for the various degrees of hearing loss. She shares her ideas and experience and asks questions to other parents on a yahoo support group that she helped to create with Amy another SUPERMOM called learn2hear This is an outstanding group for parents of younger children just beginning their auditory-verbal therapy journey.
MEET GAGE AND BROOK!!!
GAGE...
AND BROOK!!!
INSPIRATIONAL FAMILY!!!!!!!!!! LIVE FOR THAT SOUTHERN DRAWLLLLLLLLL!
(PS. Val, thank you so much for all of your support!)
Monday, November 12, 2007
Josh Swiller's video...UNREAL!
UNBELIEVABLE...What impressed me the most about Josh Swiller is his ability to
adapt. He went through a period where he couldn't hear anything
after being raised with the oral approach and survived that period
learning sign. Then, he was willing to take the risk to return to
the world of hearing that he had learned to live without, it's his
character aside from his obvious writing talent that really struck
me. The video was really well done, especially for a parent
wondering how the implant works and what effect it produces for a
person who was used to hearing with hearing aids. The part where he
hears "sh" which is extremely difficult to hear with aids and then
says, "shit," was so natural and human, the video was beautiful!
I also appreciate that the video has captions- the original one I found on his website did not, then I found this one...can anyone give me a lesson on how to include captioning on videos??
Go to Josh Swiller's Blog for more info...and BUY HIS BOOK THE UNHEARD...A Memoir of Deafness and Africa.
Just to give you an idea of his writing style, click on this article from the WASHINGTON POST
He is amazing!
Sunday, November 11, 2007
CHRISTIAN!! PHENOMENAL BILINGUAL LITTLE-MAN
One of my first friends on the PEDIATRIC COCHLEAR IMPLANT CIRCLE was a mom named Sabine who lives in Germany with her four sons and hubby. We chill on the computer after a long day of being moms and check in with our support groups at the same time, because she is in Germany and I am in Italy...so, every now and then we send each other a message during our computer time. She is raising her son Christian to be bilingual, he speaks German and English brilliantly.
This is what she would like everyone to know about Christian:
Christian is 6 years old, lost his hearing due to bacterial meningitis and received two implants in one surgery at the age of 10 months (Feb. 2001).
We have followed the auditory-verbal approach ever since.
Christian, just like his three brothers, is fluently bilingual in spoken German and English. He attends an English school in Germany and is doing extremely well.
This video shows him as a host of his class assembly.
We would like to say a big "thank you" to Christian's one-in-a-million class teacher, Mr. Preston, who has pushed Christian beyond his limits.
(No limits here...)
GO CHRISTIAN!!!
IT IS WELL WORTH YOUR TIME TO CLICK ON THIS LINK! AND TO THINK THAT ENGLISH IS HIS SECOND LANGUAGE!
NOTE:
Bacterial meningitis accounts for around six per cent of all hearing impairment in children. According to recent research 72 per cent of these children will become deaf before their third birthday. Deafness at this age can have a severe impact upon a child's development of social and language skills. For this reason it is vital that hearing impairment following meningitis is identified as soon as possible so that parents can adopt appropriate strategies for combating its effects. DEAFNESS RESEARCH UK
IN ADDITION:
Cochlear Implants Navigating a Forest of Information…One Tree at a Time provides the following information in its section regarding cochlear implant candidacy: ...If meningitis is the cause of hearing loss, it may be important for the child to be implanted as early as possible as this condition causes ossification(bone build up) in the cochlea, making it increasingly difficult to surgically insert the electrode array as time passes.
Apparently, Christian's family acted quickly and have been working hard ever since...now this is an inspirational child!
This is what she would like everyone to know about Christian:
Christian is 6 years old, lost his hearing due to bacterial meningitis and received two implants in one surgery at the age of 10 months (Feb. 2001).
We have followed the auditory-verbal approach ever since.
Christian, just like his three brothers, is fluently bilingual in spoken German and English. He attends an English school in Germany and is doing extremely well.
This video shows him as a host of his class assembly.
We would like to say a big "thank you" to Christian's one-in-a-million class teacher, Mr. Preston, who has pushed Christian beyond his limits.
(No limits here...)
GO CHRISTIAN!!!
IT IS WELL WORTH YOUR TIME TO CLICK ON THIS LINK! AND TO THINK THAT ENGLISH IS HIS SECOND LANGUAGE!
NOTE:
Bacterial meningitis accounts for around six per cent of all hearing impairment in children. According to recent research 72 per cent of these children will become deaf before their third birthday. Deafness at this age can have a severe impact upon a child's development of social and language skills. For this reason it is vital that hearing impairment following meningitis is identified as soon as possible so that parents can adopt appropriate strategies for combating its effects. DEAFNESS RESEARCH UK
IN ADDITION:
Cochlear Implants Navigating a Forest of Information…One Tree at a Time provides the following information in its section regarding cochlear implant candidacy: ...If meningitis is the cause of hearing loss, it may be important for the child to be implanted as early as possible as this condition causes ossification(bone build up) in the cochlea, making it increasingly difficult to surgically insert the electrode array as time passes.
Apparently, Christian's family acted quickly and have been working hard ever since...now this is an inspirational child!
Saturday, November 10, 2007
AN INSPIRATIONAL MOM BLOGS HER NEW JOURNEY
(Note:copied with permission from Christina's blog)
MEET CHRISTIAN'S MOMMY
I'm a 29 year old first-time Mommy to my gorgeous baby boy, Christian. Christian has severe-profound sensorineural hearing loss in his right ear and moderate-severe in his left, and we learn more about his loss everyday. I've been married to my fabulous husband, Chuck for 2 years. He's an amazing husband and father. I'm making the transition from working full-time as an Event Planner to working 24 hours a day as a Stay-at-Home Mom.
CHRISTIAN'S MOMMY'S BLOG 3 DAYS BEFORE HE RECEIVED HIS HEARING AIDS
FINALLY! We are only 3 more days away from getting Christian's hearing aids. It's hard to believe that it has taken us THIS long to finally get him aided, but it's almost here. I can't even begin to describe how excited we are as a family to get the little guy his ears. Christian's aids will be set low, and gradually increased to high settings as the weeks go by. I JUST CAN'T WAIT!
I know that I want the first words he hears out of his aids to be "I Love You Christian", but I can't decide what the first SONG I want him to hear. Right now, it's a toss-up between Lie in Our Graves by DMB and In My Life by The Beatles.
We've been working on A LOT of ASL, and Christian has definitely picked up the sign for "Milk" and is almost there for "More". I know over the past couple of years, many folks with hearing babies have used signs as a way to communicate with their kids. I think that is AWESOME and a wonderful bonding experience for the parents and child. I will say though, as a Mommy to HOH baby, signing has taken on a whole new meaning for us. Right now, without his aids, signing is the only way that Christian can "hear" us. Even when he gets his aids, we still will have to rely on his signs.
AND NOW FOR CHRISTIAN'S BIG DAY...
TO FOLLOW THIS INSPIRATIONAL FAMILY'S JOURNEY IN DEAFNESS, READ THEIR BLOG! LIVE*LAUGH*LOVE (Christina, could ya tell me how to play music on my blog like you do???)
MEET CHRISTIAN'S MOMMY
I'm a 29 year old first-time Mommy to my gorgeous baby boy, Christian. Christian has severe-profound sensorineural hearing loss in his right ear and moderate-severe in his left, and we learn more about his loss everyday. I've been married to my fabulous husband, Chuck for 2 years. He's an amazing husband and father. I'm making the transition from working full-time as an Event Planner to working 24 hours a day as a Stay-at-Home Mom.
CHRISTIAN'S MOMMY'S BLOG 3 DAYS BEFORE HE RECEIVED HIS HEARING AIDS
FINALLY! We are only 3 more days away from getting Christian's hearing aids. It's hard to believe that it has taken us THIS long to finally get him aided, but it's almost here. I can't even begin to describe how excited we are as a family to get the little guy his ears. Christian's aids will be set low, and gradually increased to high settings as the weeks go by. I JUST CAN'T WAIT!
I know that I want the first words he hears out of his aids to be "I Love You Christian", but I can't decide what the first SONG I want him to hear. Right now, it's a toss-up between Lie in Our Graves by DMB and In My Life by The Beatles.
We've been working on A LOT of ASL, and Christian has definitely picked up the sign for "Milk" and is almost there for "More". I know over the past couple of years, many folks with hearing babies have used signs as a way to communicate with their kids. I think that is AWESOME and a wonderful bonding experience for the parents and child. I will say though, as a Mommy to HOH baby, signing has taken on a whole new meaning for us. Right now, without his aids, signing is the only way that Christian can "hear" us. Even when he gets his aids, we still will have to rely on his signs.
AND NOW FOR CHRISTIAN'S BIG DAY...
TO FOLLOW THIS INSPIRATIONAL FAMILY'S JOURNEY IN DEAFNESS, READ THEIR BLOG! LIVE*LAUGH*LOVE (Christina, could ya tell me how to play music on my blog like you do???)
Friday, November 9, 2007
Signs...of good things to come
If I could have left Li-Li's video another day, I would have...even a week, she's so beautiful, but I actually had a day worth blogging about...and it has been a long one. I began the day by Hokey Pokeying with one of my pre-school classes, then I bought myself a new military green coat for my birthday (November16th) and at 1:00pm I met Jordan and his class in the cafeteria. As I've said before, his typical school day is from 8-1, but twice a week he goes back to school to study Music. On Fridays,his class walks to the cafeteria of a private school for lunch, because there is no cafeteria or lunch service in his school. He is such a picky eater that he can never find anything to eat at the cafeteria (keep in mind it's an Italian cafeteria and this food is nowhere near the moon cheese pizza and rubber spaghetti of my fondest school memories)so I show up with a couple of pieces of pizza and some peach flavored iced tea. Jordan says, "Thanks!" and as I'm about to leave I see the deaf gentleman, Francesco who always drops by my house to say hi, leave information and ask how Jordan's doing. He was sitting and having lunch with his 10 year old son Roberto who is hearing and who signed and interpreted for me so that I could communicate better with his dad.
I had seen Francesco about a month ago when I asked if there were sign language courses available and he had said no. Keri, who left a comment on one of the posts had suggested that I attend a function organized by the Deaf Community or even an informal get-together. So, I proposed these ideas to Francesco, but he said there were no organized events planned for any time soon, then I asked about a dinner among friends, although I felt like I was inviting myself, but he said there weren't any get-togethers organized in the near future. I'm trying to learn sign language!!! Then, something so sweet happened, (aside from the fact that his son is unbelievably mature and it just rocks my world that he acts as an interpreter at age 10)Francesco looked over at Jordan, sitting at the table with his friends, laughing, hanging out and signed (that was then translated by his son)"He has a really nice group of friends." Francesco had this really happy look in his eyes watching Jordan as he signed this, it was just one of those can't-quite-put-words-to-the-emotion, amazing
moments.
Then, after I had a couple of afternoon English lessons, I came home and found an envelope from my dad of a book report that a nine!!! year old hearing child named Rudy Chacon Jr.had done for school on RALLY CAPS. Allow me to quote this highly intelligent eleven year old with exceptionally great taste in literature...Rudy writes, "After the injury Jordan(the hearing character) is fearful and does not want to play baseball ever again. His parents send him to a sports camp to overcome his fears. He meets a boy named Luca who is deaf. Luca has a determined attitude and teaches Jordan to love baseball again..." Rudy also writes, "Luca is a deaf boy that has a cochlear implant. Luca has had to overcome many hard times and teaches Jordan NOT to give up his dreams...Jordan realizes he has made a great friend that has helped him overcome his fears. I would recommend this book to all my friends and anyone I know because it teaches a good lesson in friendship and courage." Rudy Chacon Jr. read RALLY CAPS, wrote a book report and "got it!" He now knows not only what a cochlear implant is and how to spell it correctly, but that DEAF means DETERMINED. THANK YOU SO MUCH RUDY FOR WRITING SUCH AN INCREDIBLE REPORT!!!!(I heard he got an A++)
Just when you think life can't get any better, it does. Tonight at 6:45 pm Italian time, I translated an email from a small Italian publishing company requesting authorization from my publishing company Publish America to publish RALLY CAPS in Italian...the waiting begins. Will my own son ever be able to read the book he inspired? We're getting closer.
I had seen Francesco about a month ago when I asked if there were sign language courses available and he had said no. Keri, who left a comment on one of the posts had suggested that I attend a function organized by the Deaf Community or even an informal get-together. So, I proposed these ideas to Francesco, but he said there were no organized events planned for any time soon, then I asked about a dinner among friends, although I felt like I was inviting myself, but he said there weren't any get-togethers organized in the near future. I'm trying to learn sign language!!! Then, something so sweet happened, (aside from the fact that his son is unbelievably mature and it just rocks my world that he acts as an interpreter at age 10)Francesco looked over at Jordan, sitting at the table with his friends, laughing, hanging out and signed (that was then translated by his son)"He has a really nice group of friends." Francesco had this really happy look in his eyes watching Jordan as he signed this, it was just one of those can't-quite-put-words-to-the-emotion, amazing
moments.
Then, after I had a couple of afternoon English lessons, I came home and found an envelope from my dad of a book report that a nine!!! year old hearing child named Rudy Chacon Jr.had done for school on RALLY CAPS. Allow me to quote this highly intelligent eleven year old with exceptionally great taste in literature...Rudy writes, "After the injury Jordan(the hearing character) is fearful and does not want to play baseball ever again. His parents send him to a sports camp to overcome his fears. He meets a boy named Luca who is deaf. Luca has a determined attitude and teaches Jordan to love baseball again..." Rudy also writes, "Luca is a deaf boy that has a cochlear implant. Luca has had to overcome many hard times and teaches Jordan NOT to give up his dreams...Jordan realizes he has made a great friend that has helped him overcome his fears. I would recommend this book to all my friends and anyone I know because it teaches a good lesson in friendship and courage." Rudy Chacon Jr. read RALLY CAPS, wrote a book report and "got it!" He now knows not only what a cochlear implant is and how to spell it correctly, but that DEAF means DETERMINED. THANK YOU SO MUCH RUDY FOR WRITING SUCH AN INCREDIBLE REPORT!!!!(I heard he got an A++)
Just when you think life can't get any better, it does. Tonight at 6:45 pm Italian time, I translated an email from a small Italian publishing company requesting authorization from my publishing company Publish America to publish RALLY CAPS in Italian...the waiting begins. Will my own son ever be able to read the book he inspired? We're getting closer.
Thursday, November 8, 2007
A TOUCHING CI ACTIVATION...TAKE IT AWAY-LI-LI!
Li-Li may quite possibly be the most beautiful child I've ever seen! I don't want to waste your time by talking, other than to say, judging by this video and the comment her mom left on another inspirational kid video here, her parents are two very special people and Li-Li is one extraordinary little girl...
To learn more about Anna-Li's story, have a look at her blog (DEFINITELY CHECK OUT THE HALLOWEEN PIX!!! ADORABLE!!)
GRENDEL'S KITCHEN WHERE WE EAT NOTHING WITH FEET
To learn more about Anna-Li's story, have a look at her blog (DEFINITELY CHECK OUT THE HALLOWEEN PIX!!! ADORABLE!!)
GRENDEL'S KITCHEN WHERE WE EAT NOTHING WITH FEET
Wednesday, November 7, 2007
REALLY GOOD VIDEO ON GETTING HEARING AIDS FOR THE FIRST TIME
I stumbled on this video on youtube.com, this one is not posted with parental permission, but the embedding code was listed by the video so I'm assuming that I can post this video. I know a couple of people whose children are getting hearing aids in the next week. They have a million questions just like I did before we got Jordan's aids the first time. This video talks about feedback, earmolds and how to talk to a person with hearing aids...in a normal voice - there's no need to scream, that's why the child is wearing the hearing aids, so he can hear. I have been going from group to group begging for videos to put on this blog because I know that our kids will help the next generation of kids just by being themselves in a video. So, PLEASE SEND ME A VIDEO OR A PHOTO WITH A LITTLE HISTORY OF YOUR JOURNEY IN DEAFNESS with your child or children, because everyone's story is unique and extraordinary. Thanks, Jodi
DEAF...Linguistic Ironies(NOT FOR KIDS TO READ)
It's easy to say the word "DEAF" until you need to start applying it to your own kid. I received the diagnosis of Jordan's profound hearing loss in Italian and learned to refer to Jordan's deafness in the Italian language. My son was "sordo." So, for the first six months of Jordan's being DEAF, I went around calling him "Sordo" to explain why he was wearing hearing aids to all of the people who looked at him with the "what are those things in your kid's ears" look.
Reality struck when I returned to Baltimore for the first time and Jordan had his hearing aids, so that when people gave me "the look" I automatically responded "He wears hearing aids because he's ----." I will never forget that moment in Mike's Pizzeria in Pikesville, I ran into my good friend's mother who was seeing Jordan for the first time wearing hearing aids and I blanked when I had to say the word "DEAF." I got so angry at myself for not being able to say "DEAF," at that moment because this was part of my son and I certainly didn't want him to grow up reacting to a label that was no longer a label, but an identity. So, I threw back my shoulders and said, "Jordan wears hearing aids because he has a profound hearing loss, he's DEAF." The more I said it the more it rolled right off my tongue.
When people can't say that my son is deaf, I say it for them and when kids, we had this experience at baseball camp in the States this year, call my son "death," I correct them.
The true power of the spoken word never really hits you until you start living your life in another language. Tuscany is famous for its use of blasphemous, crude, really bad language (not merely for its quality wine, rolling hills and medieval streets) and I can hold a conversation with the best of them. "VAFFANCULO, CAZO, PEZZO DI MERDA, FACCIA DI CULO!" Jordan can be heard screaming these words at the Playstation and I can be heard screaming at him in response, but they just don't affect me in the same way as if he had said, "FUCK YOU, FUCK, PIECE OF SHIT, ASSFACE!"...which is what those words mean. Why does this not phase me? Because the first time my son used the word "Vaffanculo!" I was sitting in my bedroom and Jordan was outside the door with Agnese(Agnis), his eight year old friend (just to give you an idea of how young they start playing with curse words here)and she was teaching him the words that he was having difficulty pronouncing. FRUSTRATING MOMENT that my kid had to be taught curse words and couldn't pick up the incidental language. (Frustrating but not a terrible thing)
All of this began to change after he received his cochlear implant. He would come home with a new curse word a day, so that I knew his social skills were growing. (Obviously he was learning quality words as well, but I am always more interested in how he interacts with his peers and if his peers are using the language, he needs to understand it). Then came an interesting incident at the dinner table about two months ago. We were sitting there eating pasta and he said, "FUCK!" My first instinct was to reach out and smack him, my second reaction was "WOW, my son just cursed in ENGLISH!!!!" Words in our native tongue are extremely powerful, much more so than in another language so let's just say he got an education in what he ABSOLUTELY COULD NOT SAY IN ENGLISH!
Back to linguistic ironies and the cochlear implant...the other day I was typing on the computer, struggling to send a message to CI CIRCLE and ignoring my son who was screaming for me to come in to give him a hug goodnight. Through my typing delirium I heard the words, "MOMMMMMMMMM, GET IN HERE AND GIVE ME A HUG! WHAT ARE YOU DEAF?" Well, that snapped me to attention and I walked right into his room. He then said, "Do you need a cochlear implant to hear me when I call you????" WE've come a long way from not being able to say the word, "DEAF."
Reality struck when I returned to Baltimore for the first time and Jordan had his hearing aids, so that when people gave me "the look" I automatically responded "He wears hearing aids because he's ----." I will never forget that moment in Mike's Pizzeria in Pikesville, I ran into my good friend's mother who was seeing Jordan for the first time wearing hearing aids and I blanked when I had to say the word "DEAF." I got so angry at myself for not being able to say "DEAF," at that moment because this was part of my son and I certainly didn't want him to grow up reacting to a label that was no longer a label, but an identity. So, I threw back my shoulders and said, "Jordan wears hearing aids because he has a profound hearing loss, he's DEAF." The more I said it the more it rolled right off my tongue.
When people can't say that my son is deaf, I say it for them and when kids, we had this experience at baseball camp in the States this year, call my son "death," I correct them.
The true power of the spoken word never really hits you until you start living your life in another language. Tuscany is famous for its use of blasphemous, crude, really bad language (not merely for its quality wine, rolling hills and medieval streets) and I can hold a conversation with the best of them. "VAFFANCULO, CAZO, PEZZO DI MERDA, FACCIA DI CULO!" Jordan can be heard screaming these words at the Playstation and I can be heard screaming at him in response, but they just don't affect me in the same way as if he had said, "FUCK YOU, FUCK, PIECE OF SHIT, ASSFACE!"...which is what those words mean. Why does this not phase me? Because the first time my son used the word "Vaffanculo!" I was sitting in my bedroom and Jordan was outside the door with Agnese(Agnis), his eight year old friend (just to give you an idea of how young they start playing with curse words here)and she was teaching him the words that he was having difficulty pronouncing. FRUSTRATING MOMENT that my kid had to be taught curse words and couldn't pick up the incidental language. (Frustrating but not a terrible thing)
All of this began to change after he received his cochlear implant. He would come home with a new curse word a day, so that I knew his social skills were growing. (Obviously he was learning quality words as well, but I am always more interested in how he interacts with his peers and if his peers are using the language, he needs to understand it). Then came an interesting incident at the dinner table about two months ago. We were sitting there eating pasta and he said, "FUCK!" My first instinct was to reach out and smack him, my second reaction was "WOW, my son just cursed in ENGLISH!!!!" Words in our native tongue are extremely powerful, much more so than in another language so let's just say he got an education in what he ABSOLUTELY COULD NOT SAY IN ENGLISH!
Back to linguistic ironies and the cochlear implant...the other day I was typing on the computer, struggling to send a message to CI CIRCLE and ignoring my son who was screaming for me to come in to give him a hug goodnight. Through my typing delirium I heard the words, "MOMMMMMMMMM, GET IN HERE AND GIVE ME A HUG! WHAT ARE YOU DEAF?" Well, that snapped me to attention and I walked right into his room. He then said, "Do you need a cochlear implant to hear me when I call you????" WE've come a long way from not being able to say the word, "DEAF."
Monday, November 5, 2007
INTRODUCING...HAILEY!!!!
Selena and Hailey, please accept my most heartfelt thank you for sharing yourselves and your story with anyone reading this blog. The beginning of this video is very emotional for me because I know how frustrating it is for Jordan to try to communicate without his processor on...he can't hear, so processing a verbal message is more difficult. Seeing Hailey struggle the first minute, seems like it lasts an hour. People viewing this, consider that this a realistic glance into our family lives and how we help our kids understand that deafness is a part of who they are and that they need to speak up for themselves, using words to explain their needs. We teach them that it is okay to ask for help. Lovin' the bling-bling on the aids! Believe it or not, this is my first time viewing a child with hearing aids signing...GO HAILEY!!
Hailey was born on March 22, 2002. She was tested while at the hospital and passed her newborn hearing screen. Hailey is the youngest of 4 children: she has a sister Ashley who is 10, and two brothers Derek, 8 and Andrew,6. Both of Hailey's brothers as well as Hailey were diagnosed at a young age with Sensory Integration Dysfunction. Sensory Integration Dysfunction has been known to be the cause of speech delays in many children. Like her brothers, Hailey had many speech delays which were attributed to her sensory issues; it wasn't until November of 2004, that a Speech Therapist suggested to us that Hailey's speech issues might be something more then just a manifestation of her sensory issues. On December 6, 2004, after a sedated ABR, we were informed that Hailey had a bilateral Sensory Neural hearing loss. At that point in time she was considered to have a mild to moderate hearing loss. On March 4, 2005, eighteen days before she turned 3, Hailey was bilaterally aided.
At that time Hailey had only about 4 words in her vocabulary that were understandable, Mama, Dada, cup, and no, so we chose a Total Communication approach. We've spoken, signed, gestured, pointed at pictures, anything we could do to help build communication. In April of that same year, Hailey started attending a hearing impaired preschool 3 times a week and went to a special speech class the other 2 days of the week. Now at almost 6 yrs old, Hailey attends a General Education Kindergarten Classroom in the morning where she is with 2 other deaf students she knows and has an interpreter in her classroom at all times. Hailey stays at school, eats lunch with her peers and then attends an intensive Hearing Impaired program in the afternoons, where she gets extra help with reading. They also work on her speech and signing skills.
Today Hailey is a very normal 5 yr old girl, she has deaf, as well as hearing friends, and has age appropriate skills in school. She's mainly a verbal kid, choosing to use her voice most of the time to communicate, but still relies on American Sign Language to help fill in when she doesn't understand what she hears.
Since her original diagnosis, it has been confirmed that Hailey suffers from an autoimmune disorder known as Auto-Immune Inner Ear Disease. If you know who Rush Limbaugh is, this is the same thing he has. Currently Hailey's hearing loss is classified as moderate to severe. It is not known to us how fast she will lose the rest of her hearing but we know and expect that there will come a day when Hailey is profoundly deaf. For this reason we chose to say that she is deaf, because for her and our family that is the reality of it, Hailey is deaf. Without her aides she doesn't hear much, and what she can hear she can't make much sense of.
Hailey is an amazing child, she's grown by leaps and bounds. She surprises us everyday with the things she says, especially since we were told by many doctors and therapists not to get our hopes up when it came to her speech. We've put no limits on Hailey when it comes to her deafness and I think it shows, and I believe that this is only the beginning for her.
Many Thanks,
Selena
mom to
Hailey Elizabeth
age 5
Indiana, USA
Hailey was born on March 22, 2002. She was tested while at the hospital and passed her newborn hearing screen. Hailey is the youngest of 4 children: she has a sister Ashley who is 10, and two brothers Derek, 8 and Andrew,6. Both of Hailey's brothers as well as Hailey were diagnosed at a young age with Sensory Integration Dysfunction. Sensory Integration Dysfunction has been known to be the cause of speech delays in many children. Like her brothers, Hailey had many speech delays which were attributed to her sensory issues; it wasn't until November of 2004, that a Speech Therapist suggested to us that Hailey's speech issues might be something more then just a manifestation of her sensory issues. On December 6, 2004, after a sedated ABR, we were informed that Hailey had a bilateral Sensory Neural hearing loss. At that point in time she was considered to have a mild to moderate hearing loss. On March 4, 2005, eighteen days before she turned 3, Hailey was bilaterally aided.
At that time Hailey had only about 4 words in her vocabulary that were understandable, Mama, Dada, cup, and no, so we chose a Total Communication approach. We've spoken, signed, gestured, pointed at pictures, anything we could do to help build communication. In April of that same year, Hailey started attending a hearing impaired preschool 3 times a week and went to a special speech class the other 2 days of the week. Now at almost 6 yrs old, Hailey attends a General Education Kindergarten Classroom in the morning where she is with 2 other deaf students she knows and has an interpreter in her classroom at all times. Hailey stays at school, eats lunch with her peers and then attends an intensive Hearing Impaired program in the afternoons, where she gets extra help with reading. They also work on her speech and signing skills.
Today Hailey is a very normal 5 yr old girl, she has deaf, as well as hearing friends, and has age appropriate skills in school. She's mainly a verbal kid, choosing to use her voice most of the time to communicate, but still relies on American Sign Language to help fill in when she doesn't understand what she hears.
Since her original diagnosis, it has been confirmed that Hailey suffers from an autoimmune disorder known as Auto-Immune Inner Ear Disease. If you know who Rush Limbaugh is, this is the same thing he has. Currently Hailey's hearing loss is classified as moderate to severe. It is not known to us how fast she will lose the rest of her hearing but we know and expect that there will come a day when Hailey is profoundly deaf. For this reason we chose to say that she is deaf, because for her and our family that is the reality of it, Hailey is deaf. Without her aides she doesn't hear much, and what she can hear she can't make much sense of.
Hailey is an amazing child, she's grown by leaps and bounds. She surprises us everyday with the things she says, especially since we were told by many doctors and therapists not to get our hopes up when it came to her speech. We've put no limits on Hailey when it comes to her deafness and I think it shows, and I believe that this is only the beginning for her.
Many Thanks,
Selena
mom to
Hailey Elizabeth
age 5
Indiana, USA
Sunday, November 4, 2007
HEARING WITH A COCHLEAR IMPLANT
Landon's bilateral cochlear implant activation...
First the left ear...
And then the right ear...
I would like to thank Landon's mom for giving me permission to post these inspirational videos! Landon can hear, another successful activation! Now it's up to his parents to help him use his cis, which shouldn't be a problem since his mom is an amazing and determined woman! Jordan can hear...but to what degree? To give you an idea of how well he can hear with his implant, take the music test here. This website was suggested on the Yahoo Support Group learn2hear which is a great group for parents with babies or small children using the oral approach or auditory-verbal therapy with or without ASL. In all yahoo support groups of which I am a member, parents' communication methods and choices are respected. For the record...both Jordan and I got one wrong!
First the left ear...
And then the right ear...
I would like to thank Landon's mom for giving me permission to post these inspirational videos! Landon can hear, another successful activation! Now it's up to his parents to help him use his cis, which shouldn't be a problem since his mom is an amazing and determined woman! Jordan can hear...but to what degree? To give you an idea of how well he can hear with his implant, take the music test here. This website was suggested on the Yahoo Support Group learn2hear which is a great group for parents with babies or small children using the oral approach or auditory-verbal therapy with or without ASL. In all yahoo support groups of which I am a member, parents' communication methods and choices are respected. For the record...both Jordan and I got one wrong!
Friday, November 2, 2007
THE MOST AMAZING SPIDERMAN
Look at this video: For Mamaw Tina & Papaw Jeff
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Evan's mom sent me this rockin' video of the finest looking Spiderman I've seen yet! Evan is four years old and wears hearing aids. GO EVAN!!!! I SEE A FUTURE IN FILM!!!!!
Thank goodness for hearing aids! As I stated in a previous blog, Jordan has a profound hearing loss and our audiologist immediately fitted him for hearing aids ten years ago upon his diagnosis. Jordan wore hearing aids for eight years before we decided to go ahead with cochlear implant surgery. Cochlear implant surgery is not an option for all children as there are varying degrees of hearing loss, and according to FDA guidelines:
Children between 12 months and 4 years who get
little or no benefit from appropriately fitted hearing
aids and do not reach developmentally-appropriate
auditory milestones are candidates for cochlear
implants, as are children 4 years and older with
severe-profound hearing loss who score < 12% on a
difficult open-set word recognition test or < 30 % on
an open set sentence test.*
*These are FDA guidelines in the US. Parents should consult a
cochlear implant center well before their child reaches 12 months
of age to begin candidacy determination and insurance pre-approval. (Copied from the Pediatric Cochlear Implant Circle Brochure - PARENTS TO PARENTS:COCHLEAR IMPLANTS FOR KIDS...IF YOUR AUDIOLOGIST OR EARLY INTERVENTION PROGRAM WOULD BE INTERESTED IN OFFERING COPIES OF THIS BROCHURE, PLEASE EMAIL ME AT jodi@rallycaps.net)
Regarding the various degrees of hearing loss (see http://deafness.about.com/cs/earbasics/a/typesofloss.htm for more information) There are basically four degrees (countries outside of the United States may not use the same terms):
Mild - At 26-45 db, a little difficulty hearing speech. Even a mild hearing loss can be serious for children still learning to talk.
Moderate - At 46-65 db, more difficulty hearing speech.
Severe - At 66-85 db, a lot of difficulty hearing speech. It is at this level that we begin to use the term "deaf."
Profound - Anything over 85 db. With this level of hearing loss, hearing aids may or may not help; cochlear implants are often an option.
Parents choose whatever approach to deafness they find works best for their families and this depends greatly on the child's degree of hearing loss...
<
Evan's mom sent me this rockin' video of the finest looking Spiderman I've seen yet! Evan is four years old and wears hearing aids. GO EVAN!!!! I SEE A FUTURE IN FILM!!!!!
Thank goodness for hearing aids! As I stated in a previous blog, Jordan has a profound hearing loss and our audiologist immediately fitted him for hearing aids ten years ago upon his diagnosis. Jordan wore hearing aids for eight years before we decided to go ahead with cochlear implant surgery. Cochlear implant surgery is not an option for all children as there are varying degrees of hearing loss, and according to FDA guidelines:
Children between 12 months and 4 years who get
little or no benefit from appropriately fitted hearing
aids and do not reach developmentally-appropriate
auditory milestones are candidates for cochlear
implants, as are children 4 years and older with
severe-profound hearing loss who score < 12% on a
difficult open-set word recognition test or < 30 % on
an open set sentence test.*
*These are FDA guidelines in the US. Parents should consult a
cochlear implant center well before their child reaches 12 months
of age to begin candidacy determination and insurance pre-approval. (Copied from the Pediatric Cochlear Implant Circle Brochure - PARENTS TO PARENTS:COCHLEAR IMPLANTS FOR KIDS...IF YOUR AUDIOLOGIST OR EARLY INTERVENTION PROGRAM WOULD BE INTERESTED IN OFFERING COPIES OF THIS BROCHURE, PLEASE EMAIL ME AT jodi@rallycaps.net)
Regarding the various degrees of hearing loss (see http://deafness.about.com/cs/earbasics/a/typesofloss.htm for more information) There are basically four degrees (countries outside of the United States may not use the same terms):
Mild - At 26-45 db, a little difficulty hearing speech. Even a mild hearing loss can be serious for children still learning to talk.
Moderate - At 46-65 db, more difficulty hearing speech.
Severe - At 66-85 db, a lot of difficulty hearing speech. It is at this level that we begin to use the term "deaf."
Profound - Anything over 85 db. With this level of hearing loss, hearing aids may or may not help; cochlear implants are often an option.
Parents choose whatever approach to deafness they find works best for their families and this depends greatly on the child's degree of hearing loss...
GOT KLEENEX?
This is a video of Kevin's cochlear implant activation...
And, this is six months later...
These videos have been posted with parental permission. Anytime parents share these personal moments in their children's lives, I am touched and appreciative. Each of these videos serves to create awareness. This is an exceptional activation experience and I am so happy for the parents who got this type of reaction from their baby...beautiful baby. Jordan's activation was not like this, not in the least. He screamed, ripped the processor from his head and refused to put it back on his ear. Apparently the audiologist made the initial mapping too loud and any time I even came close to his head with the processor, he screamed, shook and ran. Jordan was terrified to hear, terrified of sound, loud sound. I understood his fear, but I had no patience for it...Am I a bad mother? My son is stubborn, but I am way more stubborn than he is and in the end on our next trip to Pisa, the audiologist and speech therapist managed to get him to wear the ci. At that point the map was low enough and Jordan started smiling, that embarrassed type of "I was scared and it doesn't hurt" bashful grin. We stopped at a pizzeria on the way back to Grosseto and he banged forks and knives on our drinking glasses and plates, the table, etc. People kept turning and looking at us and we kept right on banging, laughing and hearing. Jordan has grown and flown since that first terrifying activation.
As has Kevin, and I look forward to more videos monitoring his progress with the ci from his parents who no doubt will be working hard to stimulate his language...
And, this is six months later...
These videos have been posted with parental permission. Anytime parents share these personal moments in their children's lives, I am touched and appreciative. Each of these videos serves to create awareness. This is an exceptional activation experience and I am so happy for the parents who got this type of reaction from their baby...beautiful baby. Jordan's activation was not like this, not in the least. He screamed, ripped the processor from his head and refused to put it back on his ear. Apparently the audiologist made the initial mapping too loud and any time I even came close to his head with the processor, he screamed, shook and ran. Jordan was terrified to hear, terrified of sound, loud sound. I understood his fear, but I had no patience for it...Am I a bad mother? My son is stubborn, but I am way more stubborn than he is and in the end on our next trip to Pisa, the audiologist and speech therapist managed to get him to wear the ci. At that point the map was low enough and Jordan started smiling, that embarrassed type of "I was scared and it doesn't hurt" bashful grin. We stopped at a pizzeria on the way back to Grosseto and he banged forks and knives on our drinking glasses and plates, the table, etc. People kept turning and looking at us and we kept right on banging, laughing and hearing. Jordan has grown and flown since that first terrifying activation.
As has Kevin, and I look forward to more videos monitoring his progress with the ci from his parents who no doubt will be working hard to stimulate his language...
Thursday, November 1, 2007
Another Inspirational Voice
This youtube video has been posted with parental permission. I'd like everyone to meet Jessica. She is speaking in front of a large crowd at a fundraiser for the Auditory-Verbal Center of Atlanta - the Governor of Atlanta was a member of that crowd. She is obviously extremely nervous about speaking in front of a large crowd (as I myself get before I have to speak before a group of people)yet she stands behind that microphone and delivers her speech like a typical twelve year old girl who loves listening to Avril Lavigne on her ipod and who religiously collects posters of Zac Effron. Jessica is not typical...she is extraordinary and later that night she could be seen shakin' her groove thing with the governor himself.(unfortunately, they didn't manage to get that on tape!) She wears bilateral cochlear implants successfully, but her outgoing personality and the courage she mustered to speak in front of a large group of people are not a product of her implants alone, they are a result of a supportive, loving and determined family that has spent hours and hours doing lessons at home in collaboration with the Auditory-Verbal Center in Atlanta to help Jessica learn to speak and gain the maximum benefit possible from her cis. Jessica also has a deaf older sister named Rachel who wears bilateral cis...but we'll dedicate this blog to only Jessica who spoke into that microphone and used her voice. To see more of Jessica and Rachel click on their website link to the right...
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