ASL-CI USER Heading for Harvard: He Thanks his Mom:)

A typical summer day in Grosseto lasts approximately three years, so when I don't post for a day, it's like I've missed a lifetime. One of the moms on the Circle posted this article, and I just wanted to share it, because it is yet another inspirational story...

Graduating St. George’s School senior turns stereotypes about the deaf on their ears

01:00 AM EDT on Wednesday, June 18, 2008

Editor’s note: Westley Resendes, of Middletown, graduated from St. George’s School on Memorial Day and is off to Harvard University in the fall but his story is much more complex. He tells it here in his own words.

I’ll start from the beginning: I was born profoundly deaf, and could not hear anything at all — not even if a 747 jet took off right over my head.

I would not truly hear until I was nine years old. When I was six, my parents inquired about a cochlear implant for me. At first the doctors were hesitant about my age, feeling that I was too old to benefit from it. Yet my parents still fought for my opportunity to hear.

The doctors from Children’s Hospital in Boston finally agreed to meet me and see if I was truly a viable candidate for a cochlear implant. Once they did, they realized that my lifelong dream was always to be part of the hearing world and I got my first implant in 1998, but my body rejected it.

I was sick for quite a while and eventually had to have it removed, taking away the newfound hearing I had had for only six months. However, the doctors, surprisingly, were willing to give me a second chance when I was 9, and in 1999 I heard successfully when my speech processor was activated.

My mom saying, “I love you,” was the first thing that came into my once-silent ears.

I wept because of the pain of the sound flooding the previously unused ears and, simultaneously, because of the joy that I had finally succeeded in my dream.

However, just because I could hear didn’t mean that I would necessarily understand everything. I had been attending speech therapy since I was six years old on a weekly basis — and still do today — to work on my listening and speaking skills. Even today, when the speech processor is not on my head, I cannot hear anything — not even my own voice.

However, I do not think of myself as deaf, as people tend to classify me.

I have always viewed myself as hearing impaired, but I can hear, just like everyone — only a little differently.

I attended the Rhode Island School for the Deaf (RISD) in Providence from kindergarten through third grade full time, as I couldn’t hear at all.

In the summer before fourth grade, I received my cochlear implant, and there began my journey into the hearing world.

I began to attend Community Preparatory School in Providence part time in fourth grade (spending the rest of my time at RISD) with the help of a sign-language interpreter.

Over the next five years, the balance of my time would shift to Community Prep; and by eighth grade I only went to RISD once a week to serve as director of periodicals in the school library.

Before I graduated from Community Prep, I began my search for high schools. I was primarily interested in staying closer to home, as I was not enthusiastic about the hour-long bus rides I had taken to Providence for the last nine years of my life.

I recall meeting Peter Anderson, an admissions officer at St. George’s School, at the high school fair at Community Prep. My dad and I asked whether it would be OK if I had an interpreter for classes at St. George’s.

Contrary to the reactions from officials of many other schools, he immediately showed great enthusiasm and acceptance for me and assured us that an interpreter would be perfectly fine. At that point, I knew that St. George’s was my dream school. I ultimately decided that I wouldn’t apply anywhere else. Fortunately, the admissions office at St. George’s liked me too, and they decided that I would be a good fit for their close community.

I have to mention my mom, who has been truly the most important factor in my success.

When she found out that I was hearing-impaired, she took it in stride and resolved to raise me the best way possible. She sacrificed everything for me, and became my first and most influential teacher. She helped me to start speech therapy when I was six and she made the decision to apply for a cochlear implant. I would not be in the hearing world — at Community Prep, St. George’s or Harvard without her. I owe everything to her.

*Adorable*

I went to St. George’s knowing no one at the school except my interpreter — Michele Neiley, whom I had the luck to work with since sixth grade at Community Prep. My new classmates were curious to see an additional adult in the room, signing to a student who happened to have a funny thing on his head (the speech processor for the cochlear implant).

I got through my first academic day fine, but then I was left alone for the required sports period. My interpreter would only be with me for the class day, not after school. I did not know this, so I was somewhat lost. I decided to manage football, as a doctor’s note barred me from playing contact sports because it posed too great of a risk to losing my hearing (by a head collision).

The football coaches were eager to take me under their wings and show me how to do things. Their investment soon paid off. I immediately enjoyed managing, knowing that my contributions would help the team for the better.

A strong memory of my first day at St. George’s was the freshman picnic outside Diman Hall (the freshman boys’ dormitory). That was my first social, non-academic, interaction with my classmates.

I recall that a circle of boys surrounded me and began to pepper me with questions like, “What’s that on your head?” and “Can you read lips?” With the help of a new friend that I had just made, I was able to explain who I was. They immediately met my response with remarks of enthusiastic interest, and I felt at that point that I had made the right decision to attend St. George’s.

From that very first day, I was accepted there, and that is the one thing that I will miss the most about the school. It is a very close-knit community and you will meet practically everyone on the campus at least once. The overall sense of acceptance of everyone there is truly incredible.

Later that week, I was walking by the chapel to [teacher] Doug Lewis’s geometry class and this very old, old man approached me over the hill, like the Ghost of Christmas Past.

It turned out that he was the conductor of the brass ensemble, Tony du Bourg. He pointed at me, and said, “Hey! Are you that West Resendes boy?” I timidly whispered yes. He said, “I want you to play music!”

I laughed, but then thought, “Okay, I’ll do it,” — primarily to make this man happy and secondly, to see if I could really do it.

I’ve always wanted to disprove stereotypes. Here is a piece of advice I always give out: Never allow a stereotype to define you. That’s why I joined the brass ensemble, that’s why I gave a speech to the whole school when I ran for senior prefect last year (and lost) and that’s why I gave a “chapel talk” in April of my senior year.

All of these were challenges that I overcame.

Once Tony du Bourg met me, I started out on the cymbals and I would play for chapel services (the school meets in chapel twice weekly, once for a formal Episcopalian Mass, and once for a senior chapel talk).

After a month, I started taking lessons on the baritone horn — which is a slightly smaller version of the tuba — and I’ve played both instruments for services as the only dual-instrumentalist for the brass ensemble for the past four years. (Sometimes, I had to use both instruments in the course of one song — there would be some quick instrument changes!)

I ran for senior prefect, which is St. George’s version of student government. There are 5 senior prefects selected from a field of usually 30 candidates through a school-wide election process.

I decided that I should run, regardless of my disability, so I would know that I had pursued my goal of “sameness” to my fullest.

I spend a month or so preparing my speech, practicing it endless times. The moment came and I was assigned the first speech of the night. I had never spoken to an audience of 350 students before and I must say that it was slightly intimidating, but rewarding at the same time, because for that moment everyone was listening to me, the first hearing-impaired student to attend St. George’s, give a speech on why I should be their senior prefect.

As I spoke, the pit in my stomach began to dissipate and that rousing feeling of success took its place. I had defied everyone’s expectations in speaking, in expressing my opinions in a public arena. Apparently, enough students understood and valued my message of student-faculty communication to propel me to the coveted Top Ten candidates through their votes.

In the end, I didn’t get the spot but it prepared me for the annual rite of passage for seniors — the chapel talk. Just like any other St. George’s senior, I was to have an opportunity to tell my peers about my journey.

I began penning my chapel talk months before I was scheduled to speak and I practiced it countless times in speech therapy.

When the day came, I chose “Amazing Grace” as the hymn to be sung that day, and after singing it, I walked up to the podium of the chapel.

Looking upon my audience of about 400 people, including students, faculty, staff and my parents, I felt wonderful.

I began my talk with a moment of silence, lasting a scant 15 seconds, so that the school community could have some idea of what it was like for me for my first 9 years. As I spoke my words, my peers listened to me attentively. As I concluded my talk, the school community rose from their seats and applauded for me. It was a truly wonderful moment for me.

I participated in a good number of extracurricular activities, and those certainly are my hobbies and interests. In the fall, I managed football and in the spring it was baseball. This spring I had a small moment of glory when I pinch-ran for a batter for the last home game against Thayer Academy.

Unfortunately, the batter after me grounded into a double play, but it was truly a pleasure to have a small taste of a varsity baseball game.

In the winter I served on the stage crew for the musical. That was truly a pleasure, as I was able to get my hands dirty with power tools and help to construct a fully functional set for the actors and actresses.

I had a cameo role in the musical every year, served as property master for junior and senior years, and was captain of the stage crew my senior year. I’ve written feature stories for the school newspaper for the last three years. I also was head of the Young Liberals Club this year and was a day prefect (a mentor for younger day students) for the last two years.

I expect my academic focus at Harvard to be on biology and neuroscience because it will help me toward my goal — one that some may call lofty.

One in every thousand people in the world has a problem with their auditory system. I am one of those people, and I want to change that.

I’ve kept a close eye on the development of the controversial research of stem cells and always wondered, could stem cells help us hear again?

I want to find a nonmechanical solution to help the hearing-impaired. I currently depend on a cochlear implant, which is a technological achievement in itself but I want to do better.

I want to be able to plant stem cells in the cochlea of the inner ear in place of the broken hair cells that are the most prominent cause of hearing impairment. My hope is that if stem cells can live up to the vaunted expectations, they should be able to regrow into hair cells, and restore hearing among millions.

I hope to work at the Stem Cell Institute at Harvard and just jump into the research that they are already conducting on stem cells and the regeneration of hair cells. College will be a continuation of my boundary-breaking journey, and I plan, just like stem cells, to live up to my own expectations.

Deaf Couple Gets CI : Abbie's Experience

 

 

Contrary to how she bowls, New Jersey Cover Girl Cochlear Implant Advocate, Abbie, (who we ALL know and LOVE) NEVER talks out of her Ass...

Abbie left this thoughtful comment on my post: To Implant or Not To Implant a Child Who Has Never Been Amplified (Note: One day...we will hang out, and it will be UGLY!)

I want to inject a comment because of what I saw at this past convention. I had the opportunity to meet many people that have been deaf all their lives and decided to get a CI. Many of them were simply curious to see what makes a sound, they communicated through ASL and they did not speak. I came upon this couple who has never heard a single sound, but they decided together that they were going to get a CI. And they did, together, same day surgery.

Mind you this is just one of many "Lanes" that I met but I was drawn to this particular couple. They reminded me of the couple in "Hear and Now." I latched onto them and asked them what made them decide to get a CI after being unable to hear for the past sixty years. They told me they just wanted to hear sound. Their expectations were very low because the doctors and audiologist stressed that the benefit to someone who has never been amplified is low. They were put through psychiatric session to prepare themselves. They forged ahead not expecting miracles.

They still cannot speak but they are happy with what they can hear. Is that a benefit? Absolutely! I asked them whether the technology was around when they were younger, would they have gotten the CI knowing that the benefit would have been just the same?

They said yes but they might have not stuck with it because of the transition period of learning how to hear.

It has been said that you can never measure the success of someone else's cochlear implant journey because it is personal, but they were happy with the benefit that they did get.

They represented the grown up versions of the 14 year olds that you are talking about. They were placed in a setting where they were "mentally prepared" with a psychiatrist on what to expect. If this same technique could be used on parents to mentally prepare them on the limited expectations, I would say yes. If this type of support structure were not implemented, I would say let the child make his own decision when of age.

July 8, 2008 7:59 AM

To Implant or Not To Implant a Child Who Has Never Been Amplified

Do you or do you not give the okay for a cochlear implant to a child over age 7 who has never been exposed to any form of amplification? Good question. My answer: NO. I spoke to an audiologist at the Gala Dinner of the NHS 2008 Conference and her answer was a resounding "Maybe." The gentleman sitting next to me, who worked for Advanced Bionics agreed with me.

We were discussing the case of a fourteen year old boy who really wanted a cochlear implant. He had excellent speechreading skills and signed, but had never worn hearing aids. His parents and this child, who really wanted a ci, approached this audiologist. Their reasoning for requesting the ci was not because they believed it would be an "instant fix," rather, the boy wanted to be exposed to sound. He wanted to know the "sound of sound." He wanted to be aware of background noise in the street, in restaurants: he wanted to "hear" music.

The audiologist assured me that the parents were provided with reasonable expectations, resources were provided and they were told again and again that their son would not acquire speech as he had never had access to the spoken word prior to the ci. I asked her if the parents had been given the contact information of other parents who had lived the same experience. She said, "No."

The parents told the audiologist again and again that they did not expect their child to speak...they were not expecting a "miracle."

I looked at the audiologist skeptically. Implanting a child who has never heard at age 14 will only be a delusion for that child and the family. That family, no matter how many pamphlets or how many doctors tell them that child will not speak...HOPES that their child will speak or they would NEVER go ahead with implantation on a fourteen year old Deaf child who signs.

The child received a cochlear implant.

Apparently, although the child is unable to decipher sentences and cannot speak, the child says that the ci assists him in speechreading and provides him with a certain tranquility with regard to environmental cues.

And the parents...???
They would like to know why their child still isn't speaking.

NHS 2008 - My Speech

Here's my speech! I will say this - at a certain point, I started shaking, like a physiological reaction or something. I began fairly calmly and suddenly, I got the shakes. Luckily, I started the powerpoint presentation at that moment, so I managed to pull it back together, but it got a little sticky there for a minute. I don't know that I followed it word for word, but the jist was this:

INTRO:
Good Morning. My name is Jodi Cutler Del Dottore. I am an American Mom living in Tuscany. My 11 year old son Jordan was born profoundly deaf, wore hearing aids for eight years and three years ago was implanted in Pisa by Prof. Stefano Berrettini with Cochlear’s Nucleus 24. His first processor was an Esprit 3G, and he currently wears a Freedom. All of our expenses have been covered by the Italian National Healthcare Service.

The cochlear implant changed our lives. From the moment of activation, Jordan flew, grew and found his voice. Because he found his voice, I was able to raise mine regarding our experience. My father and I wrote the book RALLY CAPS, and incorporated a strong deaf character with a cochlear implant just like my son, because every child has the right to find himself in literature. RALLY CAPS has been endorsed by Cal Ripken Jr., Brooks Robinson, and Curtis Pride, the only Deaf Major League Baseball baseball player. It was published in the United States and has just recently been published in Italy. At the book presentation two weeks ago, I invited the Medical Professionals involved in helping our child, each and every one of them not only attended the presentation, but they spoke.

The following is the dedication in the Italian Version of Rally Caps to all of the medical professionals and teachers who have assisted us in raising Jordan’s voice:
Placing your child in the hands of other people and having to trust these people with your child is the most difficult thing for a mother. When life requires that you ask for the help and support of persons outside of the family, you suddenly find yourself in an extremely vulnerable position. Finding professionals willing to offer all of their efforts and competencies, who moreover demonstrate the ability to love your child in such a way as to contribute to his growth is…extremely rare.

*Slideshow*

I travelled ten hours, changed trains four times and sweated my way to a hole in the wall of a hotel room with a bathroom in the hall to provide you with this message: There is NO greater ally in making your job a success than the Mother of the Deaf Child you are assisting. I am here today, based on my experience here in Italy, to provide you with a Mother’s perspective.

PEDIATRICIANS:
Jordan was born in Baltimore and was extremely alert and obviously intelligent. There was no newborn hearing screening program at that time. Because Jordan was so intelligent, we questioned our pediatrician numerous times regarding his lack of language expression, he wasn’t babbling at all. Each and every time, my pediatrician called me neurotic… Motherly piece of advice number 1: LISTEN TO A MOTHER’S OPINION, THERE IS NO ONE WHO KNOWS HER CHILD BETTER.

As an American Mom thrilled to be living in Tuscany, I jumped off the airplane with ten month old Jordan slung over my shoulder ready to dive into some Chianti and pecorino cheese. One month after we settled into our new small town Grosseto lifestyle, we took Jordan for his first check up with our new paediatrician. Dr. Giovanni Lenzi performed a standard Boel test which involved distracting Jordan with one hand and ringing bells with the other- to which Jordan had no reaction. We were sent to Florence where they performed an ABR that indicated Jordan’s profound bilateral sensory-neural hearing loss. However, try to imagine the scene in that office...

AUDIOLOGISTS
When this audiologist came to speak at my book presentation a week ago, she commented on how different I was compared to that first day that I met her. I was a 25 year old American Mamma wearing cut-off jeans shorts, very broken in tennis shoes who didn’t speak a lick of Italian. What I didn’t tell her, because the most important thing in our relationship was the fact that she loved Jordan, was how angry she made me the day she gave me that news of my son’s deafness. She looked right through me…and spoke to my mother in law. And when I intervened by means of my husband and said, you need to talk to me, I AM THE MOTHER, she began calling me “dear.”

Motherly words of wisdom number 2: When you give a parent news of their child’s hearing loss, look them directly in the eye and never look at them with pity. If that mother is Hispanic or deaf, make arrangements for an interpreter to be present because the news you give that mother will change the rest of her life.

SPEECH AND LANGUAGE PATHOLOGISTS
Armed and dangerous with hearing aids, next stop Auditory-Verbal Therapy four times a week. Advice Point 4: This one’s for the Speech and language Pathologists, and Auditory-Verbal Therapists: Encourage that Mom who now assumes a new role as Mom/Teacher, focus on the positive progress made.
Imagine your typical playground scene, it is natural for a mother to teach her son right from wrong, how not to climb up the sliding board or not to push the child in front of him...it is not natural to have to shove language down your son’s throat "Oh, look, there's a toy train, can you say Toot Toot? Oh, look that little girl has a toy car, Brrrrrooom, brrrrooom!" This dual role of teacher/mother blew me away, I am a teacher, but I have Never had a student as stubborn as my son. My speech therapist explained that my son’s temper tantrums were due to his frustrations regarding his inadequacy in expressing himself, he threw a lot of temper tantrums, so he must have been extremely frustrated.

It was my son’s frustration and the fact that he was falling behind socially that led us to choose the cochlear implant.

COCHLEAR IMPLANT TEAM
After a couple of opinions and research we found Santa Chiara Hospital in Pisa where Dr. Francesca Forli answered every single one of my fifty questions calmly, objectively and sincerely. I had found my implant team. Prof. Stefano Berrettini performed the Implant Surgery leaving Jordan’s residual hearing intact. He provided me with his personal cell phone in case of emergency and called a couple of times to check on Jordan’s progress, note Jordan’s operation was the day before Christmas. I am not asking you to give up your personal lives for your patients, however it might be a sort of a human touch to delegate a phone call to a member of the implant team to find out how that child is doing…and how that mom is doing. A calm mother means a calm child.
Motherly request number 5: Go above and beyond the call of duty every now and then, it goes a long way in establishing a collaborative effort with the mother of that child, which will only make your work more successful.

The cochlear implant enabled my son to become independent. Our journey has not been easy, but it has been extremely rewarding.

SUPPORT NETWORK
After spending ten years without support, I found the Pediatric Cochlear Implant Circle a community of over one thousand parents at various stages of the cochlear implant journey. Some parents use ASL as a bridge or in conjunction with spoken English...other parents strictly use the Auditory-Verbal approach. We exchange information regarding the latest technology and offer psychological support having been there and done that. I then joined the blogging community, which has led to a productive dialogue with the Deaf Community. Hearing mothers of Deaf babies with CIs are making a difference in opening minds within the Deaf Community.
Mom’s Final Request: Provide that Mother with resources to help her through the lifelong journey with her deaf child.

I would like to share a little poem by Shel Silverstein entitled
Listen to the Mustn’ts

Listen to the Mustn’ts, child,
Listen to the DON’TS
Listen to the SHOULDN’TS
The IMPOSSIBLES, the WON’TS
Listen to the NEVER HAVES
Then listen close to me-
Anything can happen, child,
ANYTHING can be.

We are an example that Anything is possible. Empower that mother by validating her concerns, looking her directly in the eyes when you speak to her and providing her with resources that offer support and guidance... and you will save that child.

When Listening to the Child Requires Choosing ASL

Posted by a mom on the Pediatric Cochlear Implant Circle:
My daughter is not a stellar oral child. She is 5 and lipreads a few phrases and
speaks with all her signs but it is mostly unintelligible. Our difference is
that our implant team refuses to do a CI unless we completely drop ASL...we
refuse. (I had never heard this before and was kind of surprised.)

My only insight is that all children are different. Some deaf kids are just not able to learn to speak and listen exclusively, no matter how much we want it.

When my daughter was a little older than 2 we had a highly respected TOD come to
our home and work with us for a few weeks. The second time she came, just as she
was leaving she said "Wow, she is all ASL isn't she! You have yourself a
signer....nothing you do can change that!" She had only had her hearing loss for
about 8 months and it was only 60 db and she was aided to 0!!

Turns out the TOD was right. We do speech and she has been improving, but she just doesn't care all that much. She wears her aids and gets great benefit from them, but not with speech. She sings and vocalizes constantly, she even has sound effects when she plays. We will continue our listening and speech therapy, but our emphasis has
shifted. We recognize that our daughter is fine without speech and that being
happy and having real language is the most important thing, and through ASL and the Deaf community, she has those things.

Our daughter is Deaf. She attends a school and church for the Deaf. Her friends
are all Deaf and we now function inside the Deaf community. My daughter's
identity and personality are intrinsically linked to her Deafness and there is
nothing I can do to change this. I know there are many on this list that do not
feel this way, but that is the path that my daughter has lead us on. We have had
to shift some of our goals and dreams....NOT give them up, just change what they
look like. But for us, this has been our journey.

There has been an interesting thread on the Pediatric Cochlear Implant Circle regarding progress made with a CI, and I wanted to share this mother's post. Hers and a couple of other parents reinforced the same fundamental concept with regard to choosing communication methods and parenting a deaf child: Listen to the Whole Child, because a child communicates in many ways on many levels.

The Power of Words...Which Language? A Response to Karen Mayes' Dad

Just downed another yogurt and banana, because I will maintain my new body at least until I have to get into that dress for the wedding! And now, the Italian construction workers cheer when I walk by instead of the normal once-over. Although, don't lose your pants...the toothless Italian construction workers are NOTHING like those muscular sweaty-hot American ones. Damn. Anyway, I almost did not make it home in one piece today because as I tried to pass a VERY slow-moving car, I almost crashed head-on into an oncoming van...almost, but not quite, so here I am still alive and typing like a madwoman. Why are there only 24 hours in a day? DING. Jordan's pizza is ready. The child eats pasta with ricotta, pizza or chicken fingers, not the best diet, but since I so do not "cook" in the kitchen...

Moving on...

Karen Mayes left me a comment her dad sent her yesterday, and when dads send comments, they must be addressed, especially this whopper (note: I will separate it into paragraphs for the commenter who complained):

"I read the blog from the woman living in Italy with her CI son. I enjoyed it very much. Somewhat related, I have been listening to lectures on great novels and today the professor was talking about how useless words are. They are horrible representations of what we see, feel, think and indeed say. What exactly do the words honor, faith, melancholy, blue, beautiful, upset, lovingly etc. etc. mean?

People, hearing and I assume deaf, will argue along the lines, "You said (fill in the blank) which tells me you mean (fill in the blank). Answer, "I said (fill in the blank) but not with that inflection you just used which changes what I meant." A recent book was written by a woman and the title was something along "Are You Wearing That Dress?" a question asked of a daughter by her mother. You can have a lot of fun with that question depending in what context the question was asked, the relationship between the mother and daughter and the different inflections used in the asking. Maybe it is a simple question or maybe it is a criticism. Words mean what ever we say they mean. They are always contextual and suffer from different interpretations. But words are wonderful and can paint beautiful pictures.

The professor talks about a scene in a Faulkner novel where the character goes out at night to take a drink from the bucket of water with a dipper and says he scatters the stars with the dipper, bringing alive the image of the reflection of the stars in the bucket but also eluding to the idea of the Bid Dipper and Little Dipper scattering the night stars.

Might be an area you might want to open to discussion with your group. I assume there are misinterpretation in ASL as well as the hearing world. It would be productive to see how people can learn not only how to hear each other but how to listen to what each is trying to say with the inadequate tools of words and signs.

One last thought. Scientist use the term "sensory probes" when discussing our senses. Touch, hearing, sight, smell are all sensory probes used to navigate our environment. What do you call deaf or sightless animals??? Lunch.. Many people do not like the idea but we too are animals and if we do not have the full use of all our senses we are at an disadvantage to compete. You will not wind up as someone else's lunch, but deafness is a disadvantage.

Seems reasonable to me one would want to improve his or her completive position, by getting an education, staying healthy, using a wheel chair if crippled, Braille if blind and maybe a cochlear implant if deaf. I plan on getting a hearing aide when my hearing falters. I do not plan on joining my local ASL group to discover my deaf heritage. Do you think I would be a happier, more complete person if I had joined some German Society when I was young to get in touch with my German heritage? I think it is wonderful that there is a support group to turn to that gives the history of the deaf and sense of pride the ASL groups intend to offer. But limit their appeal by requiring conformity..."

KM's Dad...POWERFUL WORDS that cover a variety of arguments. First of all, I love words, playing with words, sending subliminal messages and subliminally transmitting my thoughts to anyone who wants to understand. Paotie does that in his blog and that's why I enjoy reading his posts. Mishka and Aidan blog in a more straightforward passionate manner and oftentimes use text, quotes and research to support their words. My knowledge of Italian has only improved my take on English and the combination of the two languages enables me to make my points in a more specific manner. Italian is a culturally rich language full of euphemisms, idioms and words that really know how to specifically reflect an emotion, it's a very Romantic language.(interruption: Jordan and Simone just got home. Saturday night Jordan taught Simone the Twinkle Twinkle Little Star song on his guitar and Simone is now playing it. Beautiful. I'm imagining my son playing for the ladies around a beach campfire, he is the type.) I can only imagine how ASL and English play together when the individual has total visual and auditory access.

I do agree with your question, "What exactly do the words honor, faith, melancholy, blue, beautiful, upset, lovingly etc. etc. mean?" Sometimes, we don't really even know ourselves the meanings of these words until we actually live them, and then, only by explaining the experience can we give meaning to such general terms. Explaining the experience in such a way as to give meaning to such words is art in and of itself...I think Aidan created art in her post, because she managed to convey her feelings using words that touched me. I don't have to agree with her, but I can appreciate the art in what she is saying.

"Words mean what ever we say they mean. They are always contextual and suffer from different interpretations." I agree with this statement, as well, but don't forget to add other factors...body language, eyes and the audience. If I write, "I'm unwrapping a lollipop" to my girlfriend (depending on the girlfriend) and if I say the same thing to a guy friend (doesn't matter which guy friend) interpretations may vary, also depending on how well the person knows my personality. If I say this to a certain person and add body language and serious eye contact, the statement assumes an entirely different meaning. For now, let's just stick to the written aspect, though. The same thing has occurred in our discussions about the word "Fix." Interpretations are not always about taking it from the source, rather, the audience plays an important role in "getting" what the author is saying. That audience has a variety of experiences behind the words that the author just may not have...and this is the response to your point: "It would be productive to see how people can learn not only how to hear each other but how to listen to what each is trying to say with the inadequate tools of words and signs."
"Many people do not like the idea, but we too are animals, and if we do not have the full use of all our senses we are at an disadvantage to compete." I am an animal, no debate there. In regard to the rest, being at a disadvantage to compete is directly related to your environment and your desire for competition. Hearing people are the majority, so if you live in that environment, deafness will be a disadvantage. I am certain that people who submerge themselves in the Deaf community have decided to live in an environment where they do not feel at a disadvantage...entirely. Reality would dictate that Deaf individuals still need to interact with a hearing world, but the "disadvantage" factor is all in the eye of the individual acknowledging or not acknowledging the sense of disadvantage.

As the hearing mom of a deaf child, I consider the disadvantage and wanting to give my son all the power of choice in the world to never feel totally limited by environmental factors, chose the cochlear implant. Ultimately, he will choose his least restrictive environment socially and economically...only time will tell.

And...last but not least:
"I think it is wonderful that there is a support group to turn to that gives the history of the deaf and sense of pride the ASL groups intend to offer. But limit their appeal by requiring conformity..."
In an ideal world there would be no conditions placed on people and ideals, but the world is composed of diverse experiences, emotions, and demands for validation. Those vague words that you were talking about are powerful enough to break the barriers, the only question is...which language do we use?

How Does a Language Influence a Culture?

Really interesting vlog by Mike McConnell, and it was greatly appreciated by yours truly. There are many different voices in the Deaf community- it is diversity that enriches a culture. Barb Digi took the "FIX" debate a step further by expanding on and giving examples of how the word is used in the medical community and in colloquial rhetoric...
SlackinPenguin left an interesting comment:
SlackinPenguin said...
I suppose you could get away with saying "fix the ear" or you might even get away with saying "getting one's hearing fixed". However, I would think it would be a whole other thing to say, "fix one's child" or "fix a deaf child".

Know what I mean?

I know that you could find all kinds of sources around the internet that use the term "fix" in the concept we're interested in at the moment, but that doesn't make it right. I'm sure I'd have no problem finding the term "deaf mute" on the internet, but we all know that "deaf mute" is quite offensive.

We, the deaf folks, have often asked the hearing world to please not use particular terms when describing us because it offends and hurts us. Now we have parents of cochlear implanted deaf children asking us to please not use the term "fix" because it hurts and offends them. If we're going to refuse to oblige them, what leg are we going to stand on when we complain about words that describe us?

It's so nice to be stimulated intellectually after so many years of chillin' in a hole. Just the simple exchange of diverse perspectives gets my adrenaline going and surprise, surprise, I am finding a great deal of diversity on deafread.com, despite the fact that many think otherwise. Lotta great people here.

I have a question about ASL.

During this whole translation process of RALLY CAPS, from English to Italian an interesting point came up that I had never considered before the edit. In spoken and written English when the subject involves a person aside from ourself, we always pronounce or write that person's name before our own, for example:
Joe and I went for a cappuccino.
*Instead*
In Italian, they always put themselves first in a sentence:
Io e Joe siamo andati a prendere un cappuccino. (I and Joe went for a cappuccino)
Italians name themselves before all others, Americans name the other person before themselves.
Apply this to a cultural perspective. We, as Americans, always worry about the next: poor, sick, needy, countries in need, etc. it is part of our nature to put the other person's needs before our own. When we are in line at the bank, if we can't really tell who arrived first, we let the other person go ahead of us. If we are in a traffic jam and see a car needs to merge into our lane, we let them. *not trying to imply that all Americans are saints...*
But:
When you are so used to putting yourself before others linguistically speaking, how do you think that is manifested in everyday life here in Italy? I have had 85 year old women cut in front of me in the bank (don't think for a second that I haven't thought about body slamming grandma), cars cut me off on the road or make me wait twenty minutes before letting me in a traffic line - and as you can well imagine, I am an aggressive driver:)

How does a language influence a culture?
I don't know ASL, but I would be very curious to read some thoughts on this matter.

And!!!!!! I just got my copy of Josh Swiller's The Unheard...A Memoir of Deafness and Africaafter waiting three weeks...can't wait to dive into that bad boy!
And here is THE bad boy himself:

Finding Acceptance on deafread.com

Calling all radical Deaf Community members to start blasting me, sending me hate mail, telling me I'm anti-this-that-and-the-other! Just make sure you sign your name to the post, because ANONYMOUS comments just don't do it for me. Wait a second! No one has been hateful, disparaging or condescending, so what does that mean? The only vibes I've been getting are acceptance, love, passion, and THE NEED TO ASSERT A LOVE FOR ASL THAT IS A REFLECTION OF AN ENTIRE COMMUNITY. I know what it means to give up a language that is a reflection of your entire being. No one understands my sense of humor in this country, and I can assure you that everyone who knows me thinks I'm crazy.
Only when I spend thirty minutes with my Texan friend Rhonda, do I really feel understood...we speak our own common language. I kind of have truck-driver-like tendencies and in those thirty minutes, I let it all rip! Not only that, but we come from similar backgrounds, we psychologically connect. When we hang up the phone, we say "luv ya!" like I did in high school, college and before getting married and leaving all of my friends and their daily lives.
I have this middle school group of three that kills me. They listen to 50 Cent, so you can imagine the language they throw at me during our lessons. Every other word out of their mouths is "F-this," and "F-that." Once they screamed the "N****r* word -that they learned thanks to 50 Cent and asked me what it meant. How do you explain an entire history of National shame that rests behind one word to a group of twelve year olds? I feel all the negative power behind that word, that they will never be able to perceive... A couple of lessons ago, I taught them, "Talk to the Hand!" (keep in mind, I left the USA during the Rikki Lake years...omg) The other lesson, I was reviewing the present perfect tense of verbs and one of the boys told the other that he was an idiot, so this guy threw up his hand and responded, "Talk My Hand!" I don't even know how he remembered that -Oh gosh, I was on the floor. Then, I corrected him, and he said, "If I write the word "stupid" on my hand and throw it up again, wouldn't it be even more effective?" I thought that was kind of an interesting take on the whole thing. Anyway, there is a point here, although I think I've lost it...Oh yeah, languages, cultures behind the language, emotions and cultures behind the languages...and so on...
I did not let the Italian language barrier stop me from adapting this lifestyle to meet my needs and enrich me. A language barrier is a strong obstacle to overcome because there are so many subtleties in a language as rich as Italian. There is a history behind that language and emotions attached to every word. Luckily, I find myself in Tuscany where their mouths are as foul as mine:) and I have had the opportunity to meet exceptional people, diverse and accepting of my family.

Not being able to adequately express myself in the beginning was very frustrating to me, especially given the fact that my son had urgent needs that needed to be met. I rolled up my sleeves and dove into the language to learn it as quickly as possible. My family could not communicate with my son, because they did not take it upon themselves to learn Italian (although my Mom and stepfather did attend a course for four weeks that they eventually abandoned)- they formed their own communication system of broken English, choppy Italian and gestures.

Do I know ASL? No. Do I need ASL to function in my everyday life? No. Would learning ASL enrich my life? Without a doubt and the fact that it is directly associated to deafness makes it all the more appetizing to me given the fact that my son is deaf...that's why I'm here. Although Jordan doesn't sign, he is deaf. Although I must speak Italian every day, all day, I am American - English is my native language. I understand how a common language can represent a culture, but it should not represent a barrier that limits that culture from growing.

As an aside, I finally had a morning free, so I spent it getting highlights and coloring my hair. I was sitting in the hairdresser's when my cell phone rang. It was Jordan. "Mamma, please come and pick me up from school. I don't feel well." Well, I had the color on my hair and was hardly in a position to leave, so I asked, "What's wrong?" He said, " I don't want to talk about it over the phone, just come and get me." "Jordan," I said, "unless you are vomitting or have a high fever, I can not come and get you. What is the problem?" His voice then got really small, sad and pathetic and I'm thinking, oh shit, what is the problem..."Mom, they had the class representative elections again and I didn't win. MY HEART IS CRYING." Drama. Feeling rejected...another heart-wrenching mom moment where you have to let him suffer to help him grow. "Jordan," I explained, "you were already elected class representative for four months, it's someone else's turn. This doesn't mean that your classmates don't love you, it just means that someone else has to have a turn." How do you talk to a crying heart by phone? I told him to pass me the phone to the custodian who understood what was happening and reassured me that she would let him stay there a little bit to help him pull himself together. The good news: my son can talk on a cell phone to me and cry his heart out sincerely. The bad news: I am a Mamma, hear me suffer. The best news: when I came home from my hair appointment (lookin' hot)I found Jordan calmly eating lunch with Luca, and now he's on his way to his guitar lesson...

I WILL RAISE MY VOICE

I am constantly amazed by how many unbelievable people I am able to meet and understand just by means of internet. I'm all the way over here in Tuscany, living my daily life and every now and then appreciating the incredible view of the Tuscan hills that I have from my terrace, yet completely absorbed in what I have found by means of internet. I consciously made the choice to come to live in Italy - I did not want to live in Baltimore my entire life - what I did not know at the time was that this choice would have been made permanent by my son's diagnosis of bilateral profound sensorineural hearing loss. I left the USA like myself - crazy, funny, adventurous and so excited to live a new culture and lifestyle. I was a new wife, new mother and still a girl in love with the idea of being married and creating a family.
Jordan's diagnosis shocked my head into action and threw my heart into total confusion, but my head led and my heart grew bigger and bigger as my child suffered and grew, suffered and grew and slowly began to smile. When he was with me, I totally understood what he was trying to communicate and I gave him words. When he was in pre-school, I left him in the hands of a support teacher who loved him and protected him, but did not understand him well enough to help him find the words he needed. I suffered every single day I left him at that door, expecting a call from the teacher that he had thrown another temper tantrum or was screaming for his mom.
Thinking back on this now...would access to Italian sign language have helped him? Hell, yes. But I was so busy trying to learn the Italian necessary to teach him to speak that the idea of incorporating another language was mind-blowing, and I was terrified that sign would have had a negative affect on his language production. He was wearing hearing aids at the time. We desperately needed a bridge at that time, yet I did not realize it at the time. But what if all of the agony we went through with language difficulties led him to dominate the Italian language to bring him to the point where he is now? I have a lot of questions, but I do not have the answers. This is why I trust each parent to know his or her child and to make the decisions they believe are best, and to be able to modify the program based on the needs of the child.
The cochlear implant changed our lives because it gave Jordan the extra hearing he needed to comprehend others and most importantly EXPRESS HIMSELF. There is nothing more frustrating than not being able to express your feelings, opinions, and experiences. When they told me I couldn't speak English to Jordan, I decided that I would dedicate one hour a week to teaching him English in a group of four of his friends. He went from the child with the most difficulty in learning - always needing visual assistance in understanding new vocabulary, which I provided (obviously)- to the absolute best in the group in comprehending when I ask questions. The cochlear implant enables him to rely on auditory input - really unbelievable. Even the kids in the group are amazed by him and have so learned from him. My eleven year old son is educating other kids, that's some powerful stuff.
Jordan went to Elementary school with the same class and the same teachers for five years. In Italy, the same teachers follow the class for all five years, so if you have terrible teachers, you're screwed. We had the most wonderful support teacher and class teachers who learned from my son. They took him from a temper tantrum throwing lost six year old to a sensitive, proud, creative ten year old and we walked together to help him acquire language, confidence and balls.(:))
Six of those Elementary School friends are currently in his Middle School class. They protected him from day one, but the amazing thing is that he is learning to protect himself. He has this highly sensitive Italian teacher, Alessandra Del Fa, who encouraged the class members to tell something about themselves in a roundtable discussion during the first week of school. He came home that day and said, "Mom, (with this glowing face)I told everyone about my cochlear implant and that I'm deaf. When I was finished the whole class clapped their hands for me." I melted.
If eleven years ago I arrived in this country a girl...I am now a woman. My son has enriched my life: I have no regrets about decisions I've made, and I will raise my voice.

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