AND RAISING THEIR VOICES: INSPIRATIONAL EXPERIENCES IN DEAFNESS
Friday, February 27, 2009
*Smile*
I Can Only Imagine lyrics
I can only imagine
What it will be like
When I walk
By your side
I can only imagine
What my eyes will see
When your face
Is before me
I can only imagine
I can only imagine
[Chorus:]
Surrounded by Your glory, what will my heart feel
Will I dance for you Jesus or in awe of you be still
Will I stand in your presence or to my knees will I fall
Will I sing hallelujah, will I be able to speak at all
I can only imagine
I can only imagine
I can only imagine
When that day comes
And I find myself
Standing in the Son
I can only imagine
When all I will do
Is forever
Forever worship You
I can only imagine
I can only imagine
[Chorus]
I can only imagine [x2]
I can only imagine
When all I will do
Is forever, forever worship you
I can only imagine
Monday, February 23, 2009
12 Year Old Jordan Writes on Being Deaf
Jordan's Essay (translated from Italian to English) for a writing competition with the title of the competition being: Different Yet The Same
I was born deaf. And, I was born in the USA. These two things make me very different from other people. I began going to speech therapy when I was twelve months old, four times a week. I hated it, I would have preferred playing or relaxing. At the beginning, I wore two hearing aids that helped me to hear. My speech therapists Iris Lolini and Gabriella Gullotta helped me to learn to speak by teaching me new vocabulary. Slowly, I learned how to speak Italian.
Then, I started pre-school and I found a lot of children who were different than me, who I had never met before. Despite the fact that I didn't hear well and I still didn't speak well, I made a lot of friends. We played soccer, built castles and played war.
After pre-school, I began Elementary School in Istia- a new class with new children. I didn't really like the new school at first, because there was a boy who picked on me and made fun of me because I didn't speak very well. I was frustrated. My support teacher, Giulia, helped me a lot in class when I had difficulty understanding the other teachers. The kids in my class helped me but I threw a lot of temper tantrums and was often sad. I met my best friend Simone in first grade. He invited me to sleep over his house and we realized that we had a lot in common: we both liked playing Playstation, using the computer and playing basketball.
I had a lot of fun with Simone, but the school classroom was very noisy and full of confusion. I couldn't hear well enough with my hearing aids, so after much debate my parents decided to have me undergo cochlear implant surgery in Pisa. I had the surgery when I was eight years old. I have to say that I had a very different Christmas that year. Santa came to visit me at the hospital and my grandmother prepared a huge Christmas lunch that we ate on hospital beds, everyone all together. Having the surgery was scary and my friends were worried about me. In fact, when I returned to school, they all clapped for me. My mom came to school to explain some important things to my class. I remember that for the first time, everyone in my class was silent and listening to what she had to say. They helped me carry my schoolbag and they started changing their behavior towards me. I changed a lot, too.
Although I am deaf, I speak well enough. They called my mom and I to appear on National television to talk about being deaf and the cochlear implant. My mom told me it was important to go so that other parents of deaf children would be encouraged by seeing me in what is a very difficult period for parents. I played the piano on tv and I talked about my experience. I explained all of the things I hear.
With the cochlear implant I hear all of the sounds around me a lot better. I hear the birds, my sister screaming, the television, my grandma on the telephone, my American grandparents on the computer speakers and always a lot of noise in class. I used to play the piano, but now I play the guitar and attend a middle school that specializes in music. The first week of my first year of middle school, the teacher asked everyone in the class to explain something special about themselves. I stood up and spoke to my class. I said, "I am deaf and being deaf, I understand that people can sometimes be scared of the cochlear implant processor I wear on my left ear. It's a little strange. Maybe I sometimes speak in a different way. Maybe I don't always understand when people are talking to me. Being deaf makes me different and many times, people are afraid of what they don't understand. But, like all of you, I play Playstation, watch the television, play baseball and play practical jokes." My class applauded, and I felt a lot more comfortable.
I am now in my second year of middle school. I have to say that in class I feel different than my classmates. They talk a lot and this creates some difficulty for me. I am very fortunate to have a classmate named Martina who helps me a lot in addition to my support teacher. During this last period, I've been working a lot harder to try to do well in school and I've brought up my grades considerably. I'm a lot calmer than I was before. Every now and then we have to do a guitar recital in front of an audience to demonstrate how we have improved our ability to play the instrument. Every time I have to play before an audience I get very shy, but in the end, I always do well despite my nerves.
I've started to look for a girlfriend, but until now everyone I've asked to go out has said they just want to be friends. I'm a little sorry about this, because I know I would be a really good boyfriend. In this case I'm not very different from my other schoolfriends, just a little less fortunate...the women just don't understand me. For now, though, with my cochlear implant, I can ask all the girls I want without a problem.
I would like to end this brief story by saying that being born deaf has made me different than others my age, but I am sure that we are the same in the way I love my family. And with my cochlear implant, I can tell them directly or by telephone.
*Jordan Eric Del Dottore*
I was born deaf. And, I was born in the USA. These two things make me very different from other people. I began going to speech therapy when I was twelve months old, four times a week. I hated it, I would have preferred playing or relaxing. At the beginning, I wore two hearing aids that helped me to hear. My speech therapists Iris Lolini and Gabriella Gullotta helped me to learn to speak by teaching me new vocabulary. Slowly, I learned how to speak Italian.
Then, I started pre-school and I found a lot of children who were different than me, who I had never met before. Despite the fact that I didn't hear well and I still didn't speak well, I made a lot of friends. We played soccer, built castles and played war.
After pre-school, I began Elementary School in Istia- a new class with new children. I didn't really like the new school at first, because there was a boy who picked on me and made fun of me because I didn't speak very well. I was frustrated. My support teacher, Giulia, helped me a lot in class when I had difficulty understanding the other teachers. The kids in my class helped me but I threw a lot of temper tantrums and was often sad. I met my best friend Simone in first grade. He invited me to sleep over his house and we realized that we had a lot in common: we both liked playing Playstation, using the computer and playing basketball.
I had a lot of fun with Simone, but the school classroom was very noisy and full of confusion. I couldn't hear well enough with my hearing aids, so after much debate my parents decided to have me undergo cochlear implant surgery in Pisa. I had the surgery when I was eight years old. I have to say that I had a very different Christmas that year. Santa came to visit me at the hospital and my grandmother prepared a huge Christmas lunch that we ate on hospital beds, everyone all together. Having the surgery was scary and my friends were worried about me. In fact, when I returned to school, they all clapped for me. My mom came to school to explain some important things to my class. I remember that for the first time, everyone in my class was silent and listening to what she had to say. They helped me carry my schoolbag and they started changing their behavior towards me. I changed a lot, too.
Although I am deaf, I speak well enough. They called my mom and I to appear on National television to talk about being deaf and the cochlear implant. My mom told me it was important to go so that other parents of deaf children would be encouraged by seeing me in what is a very difficult period for parents. I played the piano on tv and I talked about my experience. I explained all of the things I hear.
With the cochlear implant I hear all of the sounds around me a lot better. I hear the birds, my sister screaming, the television, my grandma on the telephone, my American grandparents on the computer speakers and always a lot of noise in class. I used to play the piano, but now I play the guitar and attend a middle school that specializes in music. The first week of my first year of middle school, the teacher asked everyone in the class to explain something special about themselves. I stood up and spoke to my class. I said, "I am deaf and being deaf, I understand that people can sometimes be scared of the cochlear implant processor I wear on my left ear. It's a little strange. Maybe I sometimes speak in a different way. Maybe I don't always understand when people are talking to me. Being deaf makes me different and many times, people are afraid of what they don't understand. But, like all of you, I play Playstation, watch the television, play baseball and play practical jokes." My class applauded, and I felt a lot more comfortable.
I am now in my second year of middle school. I have to say that in class I feel different than my classmates. They talk a lot and this creates some difficulty for me. I am very fortunate to have a classmate named Martina who helps me a lot in addition to my support teacher. During this last period, I've been working a lot harder to try to do well in school and I've brought up my grades considerably. I'm a lot calmer than I was before. Every now and then we have to do a guitar recital in front of an audience to demonstrate how we have improved our ability to play the instrument. Every time I have to play before an audience I get very shy, but in the end, I always do well despite my nerves.
I've started to look for a girlfriend, but until now everyone I've asked to go out has said they just want to be friends. I'm a little sorry about this, because I know I would be a really good boyfriend. In this case I'm not very different from my other schoolfriends, just a little less fortunate...the women just don't understand me. For now, though, with my cochlear implant, I can ask all the girls I want without a problem.
I would like to end this brief story by saying that being born deaf has made me different than others my age, but I am sure that we are the same in the way I love my family. And with my cochlear implant, I can tell them directly or by telephone.
*Jordan Eric Del Dottore*
Sunday, February 22, 2009
Party Time!
Okay, while I don't really "feel" Carnevale, I'm more the Halloween type, the Italian kids go crazy for it here. The main reasons being shaving cream attacks, confetti flying, egg-throwing at cars and costumes like my mother-in-law made for Sofia...Enjoy!(Btw, the "fur" shawl was from my mom's party days lol)
Wednesday, February 18, 2009
Lay Off Miss Kat!
You should only know what a strong proponent of ASL Miss Kat's Mom is on the Pediatric Cochlear Implant Circle. She asks direct questions and always responds to mothers seeking assistance with regard to ASL. SHAME ON THE PERSON- AND I'M SURE IT WAS AN ANONYMOUS COMMENTER- WHO INSULTED HER!
*Thoroughly DISGUSTED*
Miss Kat's Mom has been through an extremely difficult period recently and has shared her experiences to enrich and assist other moms. Who needs the aggravation? Her blog "Wounded," a result of the emotional assault, produced this comment reaction:
Valhallian said...
That unfortunately does happen, it makes me think of two things.
The first being where I first went to NTID/RIT and I was made fun of because I was not able to sign at the time. But I overcame that and became a fluent signer and am now accepted in the deaf community.
Second, being more important, there is this hearing lady friend that I have been very close to since 7th grade. 13 years ago, she had a daughter and she could sense from the hospital staff that something was wrong. She got all nervous until the doctors told her that the problem with her baby was the fact that she was deaf and her response was "that's it? I can handle that". That was a result of our friendship so she was familiar with deafness and saw that it did not really hinder me from doing anything that anyone else could do, with the exception of relying on listening skills, which I did not have.
She then took the incentive to learn sign language and when I saw her about five years ago at our high school 20 year anniversary and she brought this adorable daughter that was about 8 years old at the time. They were signing to each other so beautifully and it was a great sight to see. I did not see her often as she lived in another state.
Well, I found out that she had relocated back to my state, but in a town about 70 miles away and about three weeks ago, she and I got together for lunch.
What was very astounding about this was that she had tremendously improved in her signing skills and was able to hold her own when communicating with a deaf co-worker that also joined us for lunch. She also told me that her daughter was outfitted with a CI a few years ago. Her daughter is now thirteen and I have not yet seen her but I will sometime soon.
But what she told me was that when she is with her hearing peers, she quite relies on her CI and is able to speak and listen to them.
Now this is the kicker that I LOVE!!!! When she is around her deaf peers, she actually turns off her CI and uses ASL in communicating with them. Now I was impressed with this!!!!!
But yet, there was a situation that happened a few minutes later that absolutely blew my mind away. This daughter actually called her on a cell phone and they were able to communicate rather easily. She was not using relay services, but her own cell phone as she was at the airport and she was letting her mom know that her plane had been delayed.
If she is 13 now, I would imagine that she was implanted when she was about ten. What was important was that this mother took the incentive to expose her daughter to both the spoken language and ASL and she worked so extensively with her daughter over the last three years to build up her listening skills using the CI.
I am planning on meeting her again within the next couple weeks but what I am looking forward to most of all, is actually meeting her cute adorable daughter!!!!!
These are constructive comments that serve a purpose. Hearing mothers raising deaf children have enough emotional baggage to deal with without adding ignorance to the equation.
If YOU are on a mission to promote ASL and "Save the Deaf Children of the World," segregating those with cis from those without- start by taking a good, long look in the mirror. YOU are not Miss Kat's Daughter. YOU are a product of YOUR parents and if they did something that pissed you off- YOU go sign to them. Explain and define DEAF to THEM...NOT to the hearing mom of a Deaf child who is raising her child with LOVE and COMPASSION.
Oh and by the way...
Deaf children can hear, speak...
And sign...
Monday, February 16, 2009
Anonymous Commenters BEWARE
People are beginning to get a little pissy...MM left the following comment:
Why are people 'Anon' anyway ? If you have the conviction of your stated view, then why not be up front about it ? It used to be scared deaf people who disagreed with the communual view, and were afraid they would get ostracised by peers if they knew that. (Which said more about the closed shop approach of culture at that time).
These days I would have thought, nobody is bothered about that now. There is a distinct difference between 'online' comments and grass-root daily things. I think perhaps because there is no avenue in the deaf community to have 'debates' over things, you risk conflict personally there, which is sad...
At the very beginning of blogging, the thought blew through my mind, "Wow, wouldn't it be hot to be her!"
Then, I decided to take myself seriously. I am who I am.
I have had no problem accepting anonymous comments, since a few commenters have contacted me personally via email to explain a bit about their personal lives and why, in fact, they choose to remain anonymous. Not everyone feels comfortable sharing their personal identity on line, and I can understand that. My mom has screamed at me many times telling me not to post photos and the personal experiences of my children. I have been fortunate to have had only positive interaction with people by blog, I am naive by nature- I sincerely hope this doesn't come back to bite me in the ass at a later point. For now, I'm going forward.
*And*
There are people who sign with a name, but do you really know whether that is their real name? I'm interested in stimulating dialogue to hopefully reach some sort of intense revelation. I am optimistic.
*So*
As I always say, "Take it from the source..."
Why are people 'Anon' anyway ? If you have the conviction of your stated view, then why not be up front about it ? It used to be scared deaf people who disagreed with the communual view, and were afraid they would get ostracised by peers if they knew that. (Which said more about the closed shop approach of culture at that time).
These days I would have thought, nobody is bothered about that now. There is a distinct difference between 'online' comments and grass-root daily things. I think perhaps because there is no avenue in the deaf community to have 'debates' over things, you risk conflict personally there, which is sad...
At the very beginning of blogging, the thought blew through my mind, "Wow, wouldn't it be hot to be her!"
Then, I decided to take myself seriously. I am who I am.
I have had no problem accepting anonymous comments, since a few commenters have contacted me personally via email to explain a bit about their personal lives and why, in fact, they choose to remain anonymous. Not everyone feels comfortable sharing their personal identity on line, and I can understand that. My mom has screamed at me many times telling me not to post photos and the personal experiences of my children. I have been fortunate to have had only positive interaction with people by blog, I am naive by nature- I sincerely hope this doesn't come back to bite me in the ass at a later point. For now, I'm going forward.
*And*
There are people who sign with a name, but do you really know whether that is their real name? I'm interested in stimulating dialogue to hopefully reach some sort of intense revelation. I am optimistic.
*So*
As I always say, "Take it from the source..."
Saturday, February 14, 2009
Be Mine
Let us take a break from the gripes, complaints, offensive and defensive words and overall negativity. After all, it's VALENTINE'S DAY!!!
When facing a single tree, if you look at a single one of its red leaves, you will not see all the others. When the eye is not set on one leaf, and you face the tree with nothing at all in mind, any number of leaves are visible to the eye without limit. But if a single leaf holds the eye, it will be as if the remaining leaves were not there.
(Takuan Soto)
“When we are unable to find tranquility within ourselves, it is useless to seek it elsewhere.”
Francois de La Rochefoucauld
Many persons have a wrong idea of what constitutes true happiness. It is not attained through self-gratification but through fidelity to a worthy purpose
- Helen Keller
Thursday, February 12, 2009
Cochlear Implant + AVT= No Deaf School?
Apparently not always! See, life is like a McDonald's Happy Meal- you can ask for that girl toy - without fail they give you the boy toy...and you can ask for the six-piece chicken nugget- but without a doubt-every now and then you get the four-piece. What does a good mom always do??? Check that Happy Meal before driving away...
Kim left Jaden's Story on the comments of the last blog post. Hats off to his mom who saw her son suffering and did something about it, despite what the professionals tried telling her...
One particular comment in the article hit home:
Although I was fearful leaving him in class on his first day, my gut knew that he was safe, and that he would be understood there. When I say understood, I don’t mean language-wise, I mean that people would understand him being Deaf—that they would see him as a whole human being—a smart and beautiful little boy. All he needed was access to an accessible language.
Just like Jaden, Jordan was a king tantrum tosser and not a day went by during his pre-school years that I didn't drop him at that door with a gut-wrenching torment in the pit of my stomach. You know when your child is understood...and loved. They resented his presence at that pre-school, they were scared of him and his inability to communicate effectively. He had his support teacher beside him who loved him, or I would never have left him at the door; I knew she protected him and was able to communicate with him.
*What happens when you drop your child at school and he is ALONE - isolated by a lack of communication skills?*
Either you do what I did and you insist with intensive speech therapy at home, even if the results are very slow in coming. Note: I saw that Jordan was progressing. Or you do what Jaden's mom did, you seek other options - Jaden was not progressing. It is FUNDAMENTAL that these options exist.
DianRez wrote:
The biggest value in deaf schools, however, is not the quality of education (and that varies from school to school) but in the social environment. When one is equal to everybody else and can comprehend what happens around them, that is a priceless experience of normality unavailable in the outside world.
It is educational because it gives one an idea of what life would be like if one were hearing and/or treated like hearing people. With that insight, one can face the outside world and rightfully expect equal access.
For example, watching teachers discuss topics among themselves, watching peers argue about events, or just discussing things that do not directly involve oneself gives a child the feeling that he is not the center of his universe. This means not merely seeing people flap their mouths, but understanding them.
This prepares the child to give input, to contribute, to make choices, to ask questions. This teaches the child that there are bigger things out there that they need to know about.
When the child reaches his teens, this environment teaches him interactive skills that will impact his choice of a mate, raising his family, and keeping his professional and family relationships in order.
All of this can be available in the hearing environment, but is much harder to obtain, takes longer to understand, and teaches one a sense of helplessness before it teaches a sense of involvement. If it happens that the child learns a dependent state of mind, the hearing school does not offer much in learning independence.
Yes, keep all the options open for a variety of educational experiences, but do not close the schools for the deaf.
There is nothing more frustrating than not being able to communicate. Communication is a reciprocal operation- I tell you something, you validate me and then you tell me something. When the wires get crossed, messages get mixed and confusion ensues. A child cannot manage the confusion, so producing the message becomes even more difficult.
*It took Jordan until he was five years old to be able to introduce himself to another person without stumbling and mumbling, "Hi, my name is Jordan*
Psychological issues compound the confusion and our children get lost. There is nothing more tragic than a lost child. The parent is that child's lifeline. But that parent needs resources. And mainstreaming a Deaf child who cannot communicate orally is just not the answer for every deaf child.
Tuesday, February 10, 2009
Deaf School Cuts: A Mother Speaks
There has been a very interesting discussion ensuing on the Pediatric Cochlear Implant Circle regarding Deaf School Closings. I have stayed out of the discussion as I have no experience in the matter of Deaf schools. However, one of the comments left by this mother, who will remain anonymous by choice, touched me and I wanted to share it with you...
There are certainly transitions and changes in deaf education that need to happen and that are happening. Cochlear implants (CIs) have certainly had a great impact on deaf education. I even wonder myself how long my own child's deaf school will be able to survive financially, if student numbers dwindle as the number of deaf babies being implanted grows. Currently they appear to be in good shape, with a core group of deaf families who support its existence. My hope is her school is secure and she can at least get through elementary school, if she still needs to be there. But my gut sense is they will still be up and running, even if she needs to graduate from there.
Mainstreaming is not the answer for all children.... equal access to curriculum is. In an ideal world, every single school in this country or world would have all the financial resources and supports needed to be in every local school to meet the needs of every single child with a disability, deaf or otherwise. I don't see it happening any time soon. I work for my own district school. If I thought, for one minute, they were able to educate my own child in a mainstream classroom, don't you think I would send her there ???
How much easier to not have to put her on a bus at 6:30 am so she can arrive for her deaf school's 8:00 start time; and not see her again until almost 4:00. Don't you think I would much prefer to skip the hour and more drive to get to her school functions or for meetings or when I volunteer; and instead take a ten minute ride to my local school? Do I hate the fact all her classmates live an hour away so arranging playdates is a challenge?
Yes, of course I do....
I had to quit my full time position and take part-time so I'd have free time to run back and forth to her school - and was lucky enough to be able to do it. Financially I need to be working full time. My debt keeps piling up; but my daughter is only a first grader once! So, why don't I send her locally anymore, and let her be mainstreamed?
The simplified answer - she would NOT have equal access to the school curriculum. She would be being pulled out constantly to have curriculum retaught in ASL. Hmmmmmm.... that translates into less time in the mainstream class anyway! Not to mention what she would be missing while she was being pulled out. Not just academics, but the social aspect of being a first grader.
And who suggested teaching the rest of the class to sign???? In my greatest fantasies - that would be one! I've been signing for five years and I'm still learning every single day!! That would be like suggesting we teach all the English speaking kids to learn Spanish fluently so they could converse with the one Spanish kid in class. That is assuming all the kids even spoke English....While I'd love to see all kids learn Spanish or any second language, how do you propose teachers fit this in, while still teaching standard academics? I know from experience a handful of kids would love to sign and could learn the basic labeling and other basic signs, like - hi, thank you, toilet, help, more and maybe a few phrases. But what happens when my child wants to have a lengthy conversation about the new waterpark she just went to... what hearing classmate is going to be able to keep up with her??? My child loves school now and has many friends - some with CIs, some with hearing aides, some with no auditory access and yes, even some who are hearing - all kids she meet at her deaf school. (The hearing children have deaf parents; so they are bilingual).
I tried my child in a local school, her first year - she attended one of our local elementary schools. She is so much happier and is learning so much more at her deaf school. The supports and services are incredible. Are they perfect? Absolutely not - what school is??? Do I need to stay in constant contact? Yes. I go in and do observations, volunteer, meet with her staff on a regular basis.
I could go on and on - and already have to some extent - but bottom line is - all kids deserve options and all kids deserve equal access to the curriculum in a supportive environment.
Monday, February 9, 2009
Bridges and Baggage: Passion and Power
One of my friends once said to me, "Why do I have to pay for what you've lived?"
That made me think. (happens every now and then:))
We all have baggage. Our parents' parents have baggage that is then transmitted to our parents who then transmit it to us and we, in turn, to our kids.
When you look in the mirror, who do you see? Look past the physical presence straight to the heart of who you are as a person. Squirming or satisfied?
I've said before, I can't stand when people call me "Dear." It's condescending. It's insulting. Jordan's first audiologist consistently called me "dear" during the most difficult period of my life. She treated me like a subservient, brainless, twit of an American mother in ripped jeans shorts without a clue in life...and all the while I was busting my ass teaching Jordan to grow. I have a little problem with being called "dear."
*Baggage*
Jeff wrote:
When I see people say such things like:
"Move F O R W A R D!"
It reminds me of when I was being told to accept the circumstances as a deaf child. When I was told that crying was not acceptable when you felt you didn't fit in. When I was told that I would have to lip-read for the rest of my life. When I was told many things but never informed of a visual language and a deaf culture.
Jeff interpreted my words based on his *baggage*
I am sorry you were offended, my "move forward" intended to say that it is possible to bring about change while still being respectful of the divergent viewpoints of others.
Rachel has lived her experiences, many of which she blogs about on www.cochlearimplantonline.com and has turned her baggage into passion. She writes, illustrates, photographs her emotions and helps others along the way by using her voice.
Aidan channels her energy into creative filmmaking to express herself and her experience as a Deaf Woman...with passion.
When you take your baggage, analyze it, accept it and transform it into passion for the purpose of helping others...that is Power.
Only then, can you move forward.
Sunday, February 8, 2009
Switzerland City, Baby!
Dianrez said,
Just because Jodi mentions inclusion of sign language doesn't mean she is a proponent of it. Reading her comments, I see a balanced viewpoint that attempts to include all methods.
*The point is to offer as many resources as possible to parents of newly diagnosed deaf children- not to advocate for one method over another- to give the parents a fighting chance of discovering what will work the best for their child*
Karen Mayes said:
I want to share one thing that might have no relations to Jodi's blog, but as a parent making the decision. My deaf daughter was attending a Bi Bi Deaf school and was doing very well. She started showing her curiousity about hearing world, having watched her older brother doing academically well in the mainstreaming. She started asking to go mainstreaming. I said no, but I then learned that I'd need to do the research to see if it would be a good idea to pull her out of the Bi Bi school, etc., so we visited a local elementary school, discussed with a few Deaf parents who pulled their Deaf child/children out of the Bi Bi school, etc.
She was in 2nd grade when we went ahead and pulled her out of the Deaf school into the mainstreaming and she is LOVING it! I am aware that things could change in the next few years and my hubby and I are very willing to listen to her needs, ready to rectify the decisions, send her back to Bi Bi school if needed, etc. But I learned from one wise supervising teacher... FOLLOW YOUR CHILD'S LEAD.
*Amen*
I don't know if I ever blogged about this or not, but one week after I found out Jordan was deaf, I attended a meeting held by the local Deaf community. I wanted to know more about communication options because my son was deaf. I encouraged my husband and my mother-in-law to attend with me. I didn't feel out of place, just overwhelmed. My mother-in-law and husband were devastated by the experience. It was too much for them to handle. I felt so completely isolated by my own language issues with Italian that I didn't have the strength to deal with taking on sign language as well. Had I had a dvd of baby signs, it would have made my life so much easier...and Jordan's. I did write to the John Tracy Clinic and they sent me videos on how to communicate better with my child. Those were miraculous for me because they were in English and talked directly to me as a parent.
Jordan was born deaf, but he could have incorporated baby signs, just like this hearing child: (Click to deactivate music on the right-hand column of blog)
Jordan was aided at 12 months and maybe said his first word at 18 months- you know, I don't even remember when he said his first words- I've blocked out that whole period, I think. Really difficult, painful period. I just know it was a constant repetition of life, over and over again with hearing aids. Hearing aids sucked, if I may. I could have used some visual support to help ease Jordan's frustrations.
Not every child is a candidate for a ci, there are different degrees of hearing loss. Not every CI surgeon operates before 12 months of age, visual cues can help improve communication. Unbiased information must be made available so that parents can make informed choices....
*THEN*
Their kids will lead the way.
Friday, February 6, 2009
Enough Dialogue- Build the Bridge!
I've been reading a lot of posts on Deafread lately regarding Deaf Schools closing and the various issues regarding hearing parents and incorporating ASL.
Rachel was correct when she said:
ASL is not a "magic" method, and it requires as much effort as using the Auditory-Verbal approach or Auditory-Oral approach because parents would need to take the time to attend courses to learn ASL and to use it at home. Unfortunately, there are some parents who are not involved by not attending ASL courses and using them at home with their children.
*We fear what we do not understand: Hearing parents of newly diagnosed deaf babies are slammed with information they do not understand*
Ann C said:
...What I meant by "medical authorities" are the doctors and audiologists who are often the first contacts for parents of a deaf child. Many doctors and audiologists have little to no knowledge of the bilingualism option, so they often recommend CI's or other technology and speech therapy such as AVT, because those are options they do know about.
Ultimately, it's the parents who make the final decision for their deaf child, and hopefully they are informed of ALL options, including bilingualism, by the time a decision has to be made. That's why I mentioned that Deaf mentorship is a step in the right direction of publicizing the bilingualism option. Who better than a Deaf person to educate parents about this option?
The more often that this option is presented, the more it will come to be accepted as part of the package of different options available and the medical community will come to include it as well. That will take continued effort on the part of the deaf community to keep this option in front of hearing parents, doctors, and audiologists on a regular basis...
We have been kicking this debate around for at least the year and a half I've been on deafread. Don't you all think it's time to create a plan and put it into action? Words are strong, but meaningless without a concrete plan.
Amy Cohen Effron's video The Greatest Irony on baby signs being taught to hearing babies and not deaf babies was on target.
Proposal:
1. Create a pilot study program at a hospital with a Cochlear Implant Program.
2. Work with Hands and Voices to locate the perfect situation to develop and begin this program - perhaps through their Guide By Your Side program.
3. Request that NAD contact Rachel Coleman of Signing Time to create a video for parents of newly diagnosed deaf babies that begins teaching basic signs in a fun and informative way.
4. Ask Rachel Coleman to create a series specifically for parents of newly diagnosed deaf babies.
This:
is not threatening to a hearing parent. It is fun, educational and happy- those are the elements a new mother wants to give to her baby.
I read about hearing mothers of newly diagnosed babies who begin using sign as a bridge. If the child has access to this visual language and still needs it, the child and parent will continue using it, if not, oral language skills will take over.
(Christian is saying "Barack Obama" in this video)
In the meantime, both parent and child will be communicating.
I admire Christina (Welcome to the world LILY!!) for how she approached Christian's deafness. She is a fine example of how this type of program could work. However, she did all the research herself, no one handed her the necessary materials. Think how much easier parents would have it if a program could be engineered in such a way.
We took in the gorgeous Cherry Blossoms here in DC this weekend, and Christian LOVED them. He was signing FLOWER the whole day. I was able to take a pic of the last part of his sign :)
Parents need help as soon as they receive the diagnosis, they don't need to be attacked. They need to see their babies as babies, not as community members...I think bridges can be built. Enough dialogue, start slammin' down some bricks.
PS. Congratulations to my Dad who is busting his butt to get RALLY CAPS made into a film. We walked away with an Honorable Mention in TheMovieDeal.com Screenplay contest!
Wednesday, February 4, 2009
Paula and McConnell: Just Like Old Times!
I've locked myself in my bedroom to blog and suffer from the flu in peace as six kids run rampid in my house and the dumb-ass dog chews Sofia's shoes. There is no rest for the weary in this house. Anyway, the post Parents Always Make Mistakes has generated a bit of activity on the blogosphere motivating Paula to come out of hibernation...and guess who came to debate?? That's right Mike McConnell- read 'em here:
Yer darn right, Paula. Parents have the right to decide what's best. But what's different today than 15, 20, 30 or 50 years ago is that it is easier to become more informed and make an informed decision. I'm like you, I don't regret the decision my parents had to make on raising me strictly on aural and oral communication skills. However, the decision back then would be entirely different nowadays with the internet and better access and communication. And many are learning that (depending on hearing loss amount and type of aid, cochlear or hearing aid used) that early intervention is the best prevention and make use of the brain's plasticity. It's basically either you use it or lose it.
It's not a myth but a proven scientific fact that cannot be denied whatsoever. It's amazing when you go on YouTube and see all those young kids with cochlear implants do so extremely well on listening and speaking. You wouldn't even know they're deaf. Though the option is there to use signing method (not necessarily ASL) as part of the visual communication aspect. However you look at it parents will have to make that hard decision that will follow that child for the rest of his/her life for the better or worse.
mcconnell | Homepage | 02.03.09 - 4:35 pm | #
Hey Mike, Thanks for chiming in. You're right, the Internet has definitely aided in disseminating information to parents (and others) at crucial decision-making times. My daughter is one of those kids who has such great speech and articulation that you'd never guess that she is deaf. Her oral education coupled with hearing aids and later, cochlear implants has enabled her to speak well, hear easily and even identify lyrics in noisy restaurants (something I could never do). We are thankful for the technology and have never regretted our decision.
I don't wholly agree with your last comment about parents' decisions following their children around for the rest of their life. In fact, I have seen many families start with ASL and then transition to oral, I have also seen families start out oral and add ASL. Parents' decisions are not set in stone and can and should be modified based on how the child is doing.
Paula Rosenthal | Homepage | 02.03.09 - 5:23 pm | #
*Note: I have placed this statement in bold because for some reason everyone always comes down on Paula as being anti-ASL- I never understood that*
Any parents that make a decision for their child does have an impact and does make the child for who he/she is for the time being. My mother made a decision for me and I'm the shining but positive example of that decision. Her decision back then has had an impact on me to this day while growing up. When I say "follow" I didn't mean in a negative way about the resulting effects of that decision. It does make you for who you are today along with your own decisions as a mature teen or adult that further mold you as you are. Supposed my mother instead put me in an all-deaf school with sign language and not an aural and oral intensive schooling program I'm sure I wouldn't be the person I am today. Certainly not educationally. Thank god for her decision. That decision has made the difference in who I am today. So, yes, I do believe a parents' decision does make a life long impact on a child which is probably a better wording there.
I also loved my friend Debbie's comment - she's a bad-ass in NYC that led to MM's poignant post:
I am always shocked to hear others comments on parenting -- be it deaf, CP, autism, blind, etc. If you tell a parent of a typically developing kid (I speak as a Mom raising a little girl with global developmental delays, CP, hypotonia, g-tube fed, suctioning, non-ambulatory, non-verbal, upcoming strabismus surgery, tubes in both ears)what they've done wrong -- you will not hear the end of it. They will say (maybe not to your face) "HOW DARE YOU". Why is it with such complicated lives and decisions -- with no "Guide to Your Special Needs Kid" do people feel even more entitled to give their two cents regarding their judgement of how to raise your child?!?
I am not part of the deaf community, but have learned a lot from Amelia's service coordinator who works for Clark School here in NYC, one of the big CI schools and through my friendship with you,Jodi. I have sat on the sidelines and watched the back and forth "To CI, or not to CI" and it makes my head spin.
Chocolate and Vanilla people...whatever works for you.
For centuries, parents have strived for one thing: to "do right" by their kids -- and no one has a right to question that unless it puts that child in danger, physically or emotionally. That my friends, is a parents' virtue.*AMEN, SISTER*
Tuesday, February 3, 2009
Deafness and Eating Disorders- Related?
She pauses, purse in hand, and looks at me. “If you were in my shoes, you’d do the same thing. If these were the cards you’d drawn, you’d play them. You would.” She grabs a scarf and waves me out the door, past her cane. Tony loudly yells good-bye. While she hails a cab on the corner, I tell her about a poll that says Americans are more afraid of blindness than of AIDS, cancer, and heart attacks. She looks dumbstruck. “Cancer? For real? I don’t get that. Really, it’s not that bad.”
Amazing philosophy and way of taking on the world. After reading the article, Going Deaf and Blind in a City of Noise and Lights, another thing struck me and I have a question.
Are eating disorders common in children with hearing loss?
See, we have a very young friend who is Deaf and who wears hearing aids. His family is currently dealing with anorexia on top of his deafness. It would seem to me the two would be related based on control issues, but I'm no doctor. Does anyone have any similar experiences with such a thing? If so, how was the situation treated?
Monday, February 2, 2009
Jon Alsop and Joe Burkom- Two Special Men
If I were in Baltimore right now, I would be preparing to attend two funerals one right after the other at the same funeral home to celebrate the lives of two great men I have had the fortune to have known.
Jon Alsop- Big, no huge Teddy Bear, always smiling, hugging, playing football, smooching his teeny tiny girlfriend Jill, I can still see them from High School- the most unlikely couple ever, yet so freakin' adorable. 38 years old- heart attack. Is that possible? One of the most optimistic, positive people I've ever known and had the misfortune to have lost contact with...but thanks to facebook, I got to see him one last time...
Joe Burkom- (Mr. Burkom, for a brief, very brief period "Uncle Joe" *smile*) Mr. Burkom was my friend Sue's dad. He ruled the living room and the swimming pool, in a silent, yet, I'll kick your ass if you say something out of line kind of way. During my high school years, college years and the time post-university when I lived with Sue, I was often at Mr. and Mrs. Burkom's house. They adopted me...and fed me really good home-cooked meals (and every now and then steamed crabs!). Note: lived for Mrs. Burkom's french onion soup. I don't know, Mr. Burkom was so cool. Whenever I'd arrive, he'd either be legs kicked up on the sofa reading the sports section or remote control in hand watching the O's game. Whenever I'd arrive Thanksgiving Eve to pick up Sue to go to the Tavern, he'd be terrorizing some small child and making him cry...so funny. Thanks to him, I got my first waitressing job at Pat and Mike's in Towson. Sue and I were star foodservers and we looked really hot in that uniform consisting of starched shirts, gray trousers and a bow tie! (horrendous)
I know that he lived and breathed for his family. Kenny was his superstar baseball Clemson star and Sue was his little girl, it was obvious. I don't know what has happened in the last twelve years, I just remember the time before the past twelve years, and for me it was a beautiful feeling to have been welcomed into their family.
So, my condolences to the two families who are suffering right now...I'm sorry I can't be there to sit shivah...
Love,
Jodi and family
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