Tuesday, June 29, 2010
My response- show it to your kid and let him/her decide.
Sometimes, ambiguous is good.
And in the end...Deaf is Deaf.
Jordan's response: "They always show all different kinds of people in these advertisements- Black, White, different ethnicities and now Deaf."
Yes..and now Deaf.
Kudos to APPLE.
Monday, June 28, 2010
I can't decide whether I created a ruckus or whether it was already there unnecessarily...could someone please tell me what is wrong with this? I think it's pretty remarkable if you ask me...(thanks for the link:-)) We're lightyears away from anything like this in Italy..
THE PEOPLE OF THE STATE OF CALIFORNIA DO ENACT AS FOLLOWS:
1. Section 124121 is added to the Health and Safety Code,
(a) Parents of all newborns and infants diagnosed with a hearing loss shall be provided written or electronic information from the National Institute on Deafness and Other Communication Disorders on American Sign Language (ASL), Total Communication, Cued Speech, and Listening and Spoken Language communication options for children with hearing loss, including, but not limited to, information about deaf and hard-of-hearing organizations, agencies and early intervention centers, and educational programs. The information shall be provided:
(1) By an audiologist at a follow up appointment after diagnosis with a hearing loss.
(2) By a local provider for the Early Start Program, provided for pursuant to the California Early Intervention Services Act (Title 14 (commencing with Section 95000) of the Government Code) upon initial contact with the parents of a newborn or infant newly diagnosed with a hearing loss.
(b) Neither the state , nor an audiologist, nor an Early Start Program provider , shall incur any cost for the implementation of this section.
Why all the fuss?
Monday, June 21, 2010
First of all, thank you so, so much to everyone who left comments about AB 2072. I appreciate that whenever I request information there is someone ready to assist, and then...I become informed. So important. I left the comment that I still have to visit the links provided, because...........................
JORDAN HAD HIS MIDDLE SCHOOL EXAM TODAY AND WE HAVE BEEN STUDYING!!!
This is what happened.
Luca and I prepared the powerpoint for his presentation: 30 minutes before a panel of 10 professors.
I think I was much more nervous than he was...I will never understand how he is so calm.
Jordan's topics were Auschwitz, New York, Coca Cola- history, advertising campaign and logo, Andy Warhol's "Bottles", and the history of the guitar.
He sat by the computer and used the slides as a reference point as his History, Geography, Italian Professor sat beside him firing question after question.
Luca and I were able to observe and I asked if I could take pictures: permission granted:-D
I will say this: Jordan responded to every single question, every single question. He remembered the names of films they had seen in class, the names of poems, descriptions of characters- I know for sure that he was present in class, not just physically but completely. I can't describe that feeling to you, but it is a damn good one.
At a certain point, his teacher looked around at the other teachers to see if they had any questions and they kept giving her the go ahead sign and continued saying...no, no he's doing great.
And he was. He was calm, spoke like a freaking historian. And then, he played the guitar...
Can you tell I'm amazed, because it's been five hours since he finished the exam, and I am still amazed!
I don't know. I'm really, really proud of Jordan. He is coming into himself, and I am so blessed to be by his side as he grows.
Friday, June 18, 2010
Another blogger, Candy wrote for the passing of the bill and posted What it is all about: The Truth Behind Opposing AB 2072
However, these are some sections from the document entitled:
The California Deaf Newborn Identification and Advocacy (DNIA) Group
A Citizens Advisory Group
Comprised of Deaf Consumers, Parents of Deaf Infants and Children, California
Educators, Deaf Service Provider, and Researchers
“Creating Opportunities which Enable the Optimal Achievement of Linguistic
Many of these training programs have...
little or no quality information and many also do not include ASL videos. The
Alexander Graham Bell Association (AG Bell) and cochlear implant corporations are
effective in promoting and marketing their missions and products early intervention
literature. Such is the nature of the oral-aural, cochlear-implant-oriented
philosophy which dominates the referral system, with the backers standing to gain
financially from the system as it is currently designed. Invariably, the
information provided to parents under the current system is based on the so-called
“option” system, “option” in this case being a misnomer. The current system needs
to be improved so that the focus is on language acquisition. Language as mentioned
earlier, in the general sense is not speech, and it’s not listening. This is often
where many parents can get easily confused. Counselors who make home visits are
generally not qualified or trained to explain the difference. They typically don’t
have training is language acquisition to understand the difference. They also
typically don’t have a background in Deaf culture and Deaf Studies which would
enable them to have a better understanding of the history and richness of the
visual language that members of the Deaf community share. This is why there should
be mentors who are themselves Deaf to be able to appropriately answer parents’
questions about ASL language acquisition and provide unbiased information.
Once the parents become involved with their deaf or hard of hearing infant in the
Early Start program (which is currently under Department of Developmental Services
(DDS)), most early interventionists there are hearing people who also have limited
training on early language acquisition and Deaf issues. They are not qualified or
knowledgeable enough about early language acquisition or Deaf culture or Deaf
studies. The interventionists must be culturally Deaf people who can effectively
provide guidance to parents and training in the topic of language acquisition, as
well as language training for the Deaf child.. Bilingualism should be the goal:
Visual language ASL / read-write English. ASL also provides an efficient way to
communicate understanding of how spoken English is produced and understood. Speech
training is enhanced, but secondary to visual language acquisition because it is
not 100% accessible by a Deaf child.
• Ethical Guidelines – For the identification process under the Department of
Health Care Services (DHCS), Ethical Guidelines need to be established. These
guidelines would be for audiologists, pediatricians and physicians who interact
with new parents and their Deaf babies to shift their acculturated focus from being
on “fix the problem” to redirect it to a broader consideration of the nurturing of
the child as an individual, instead of being narrowly focused on the child’s “ear,”
i.e., body part. Through the use of Ethical Guidelines and resulting training on
them, it is possible to re-focus the medical system’s “fix it” mentality, which is
inappropriate when it only focuses on a part of the child and does not take into
account the whole child as an individual and the importance of the child’s mind.
Wednesday, June 16, 2010
I present you with The SUN Test: Speech Understanding in Noise- A new test for screening hearing ability in adults.
Screening HEARING ABILITY, not a test that focuses on what a person is lacking in terms of hearing, but which enables an adult to become aware of what he or she can hear in background noise. This is the instrument:
Basically, you put on the headphones and the instrument sits on the table in front of you. A series of consonants: Afa, Aga, Apa are displayed on the touch screen and as one of the three choices is sent through the headsets, you touch the touchscreen when you hear the matching sound. Without noise, I scored 11/12 and with noise covering the consonants, I scored 10/12.
The instrument was invented by Ferdinando Grandori, Gabriella Tognola and Alessia Paglialonga of the Istituto di Ingegneria Biomedica, Consiglio Nazionale delle Ricerche (ISIB CNR) Milan, Italy
Monday, June 14, 2010
There before me...a panel of seven cochlear implant surgeons from France, England, Germany and Italy, Gwen Carr, PhD and Dr. Giorgio Lilli from Italy, as well. The panel was led by Dr. Gerry O'Donoghue also known as the Godfather. I sat next to the Empress during the discussion. I have to say the discussion was extremely interesting, especially the opportunity to hear what surgeons internationally had to say. I asked a couple of questions.
My first question was "Parents must go through the amplification process using hearing aids before surgeons will consider proposing a cochlear implant. This period is extremely brief and while I was once told that conventional hearing aids are the way to go for profound hearing loss, surgeons are now advising parents to buy more expensive digital hearing aids for that brief period of time. Given the fact that if a child has a profound bilateral sensorineural hearing loss and will most likely be, in fact, a candidate for a ci, is it really worth the extra thousands for the digital hearing aids as opposed to conventional ones?"
Every single surgeon responded yes.
I was surprised, but at least I now have my answer.
To the question posed by the moderator, "Are bilateral implants more effective than one implant?"
An Italian surgeon responded, "Actually it was God who decided that one."
At a certain point a slide was shown (I had a picture, but my camera got wiped out and lost it)that indicated, based on a study that I can't name- it was in the camera, children receive results ranging from 10 to 90% improvement as a result of the ci.
Obviously, this is a very broad level of achievement. The question was asked, "Do you tell parents this range of possible achievement when the parent is considering the ci?"
All of the surgeons said, "No!"
Parent members of the audience screamed, "YES! Parents have a right to know this information when evaluating the ci."
The surgeons then clarified. First of all they disagreed with the data. Then they said that they would not have shown the study to the parents, rather they would have explained the importance of keeping the processor on at all times, auditory-verbal therapy and parental involvement in the process.
After years as a CI Circle member, I see that the study has a foundation. There are children who are enormous "success" stories, and there are also children who struggle. The factors mentioned above are critical.
My second question was this: "I read a study discussing how a child must not be kept under the effect of anesthesia for too long, that this may provoke learning disabilities in the future. Does this affect your viewpoint regarding sequential vs. simultaneous implantation?"
One Italian surgeon responded: "I only do sequential implantation for this reason."
Another Italian surgeon replied, "I only do simultaneous implantation and I perform both surgeries in 2 hours time."
It was agreed that ci surgery should take no more time than 3 and a half hours. (I did not know this)
Then, a question was asked directly to me- "How has your experience been as a parent interacting with medical professionals?" LOL, perfect question. I responded that I was in no way forced into a cochlear implant, that I had to actually, insist. I find that other parents in Italy, live the same situation- they are told that their child is a candidate and then it is completely their decision to make based on the research and information provided.
No surgeon on the panel encouraged sign language.
Gwen Carr insisted that sign language be used as a bridge during communication gaps.
Regarding parental choice in communication methodologies, Pauline Walker, Deputy Director of Families, NDCS closed with an excellent comment reinforcing that parental choice, the need to inform parents and consider parents as members of the team was fundamental. She drew a line between the surgeons and the families that Gwen Carr then clarified by saying, "If you'd like, I can discuss procedures in cochlear implant surgery."
The point being: Each element of the team involved in taking our children from Newborn Hearing Screening to Cochlear Implantation has a specific role that must not infringe on the ultimate power of a family to make educated decisions for their children.
Not to worry...we, the parents were present.
Saturday, June 12, 2010
I know where I come from, where I am and I'm getting an idea of where I'm going.
When I look back on raising Jordan, Luca and I were alone aside from family support..totally alone. In the past three years, I have never been alone, this blog has introduced me to a world of moms just like me.
Three nights ago I was sitting next to a neurophysicist who is responsible for some sort of research on neurons that still hasn't been applied- the man studies neurons..didn't understand a word he said. Such a nice man, so boring, but very nice-he wanted to sit next to me at the dinner, but I ducked out and hit the bathroom. I spent the dinner with my friend and boss, Ferdi and a mom and daughter from New Zealand. They spent the night talking about the adventures her crazy mom had with her daughter's father. Apparently they travelled the world and hitched a ride on a boat to some exotic place I can't even remember and decided to buy two horses to climb some mountain when suddenly the mom got pregnant, so they traded in the horses for two motorcycles and travelled some more. My kind of woman.
Some people sit home and watch television as their lives pass them by.
Some people work all day and never see their kids.
Some people wait in line.
Today I dropped Sofia the second grader at school and picked her up as a third grader. Jordan came home a high school student. Tonight I watched my little girl sing in her school choir in a place in the countryside and dined on homemade mom stuff- I paid 15 euros for pizza instead of cooking.
Sometimes my worlds collide and sometimes I live each one separately. I spent four days speaking English to people from all over the world, and the past two hours speaking Italian to Tuscans.
In between I sent Jordan straight to the shower and polished Sofia's nails blue with glitter hearts.
After the gala dinner, I made Ferdi take me to Switzerland, never been to Switzerland and it is literally five minutes from Como. The first border control area was closed- can you imagine- no, Jodi, you may not enter Switzerland...but the second was open- so we drove right through. We sat and had a cup of tea with some good Swiss chocolate cookies.
Two years ago I sent him an email that changed my life. I requested to tell our story at the NHS 2008 and he said yes. From there I met Karl White and the GPOD women who have always been by my side encouraging me and giving me resources in my most difficult moments, as has Ferdi.
In everything I do, I bring my kids. I went through a transition period where I lost my head and kind of forgot how much it meant to me to be a mom. I like that Jordan smells and I have to scream at him to realize he's growing, that I have to encourage him to use his voice and yell at Sofia to stop watering the dog.
Somehow and in some way...it all works.
And I'm taking all of it with me...to Baltimore.
One more month and we're going to Baltimore, it's time to recharge.
This is my poster of the Italian-GPOD collaboration, unfortunately I lost the picture of the GPOD position paper poster:
With Special Thanks to:
Prof. Ferdinando Grandori, Director of the CNR Istituto di Ingegneria Biomedica (National Research Council – Institute of Biomedical Engineering)
Dr. Giuseppe Mele, FIMP President
Dr. Giovanni Lenzi, Chair Rete Audiologica FIMP
Prof. Stefano Berrettini, Direttore: S.O.D. Otologia-Impianti Cocleari, Azienda Ospedaliero Universitaria Pisana
Prof. Alessandro Martini, Direttore: Otorinolaringoiatria con indirizzo Otochirurgico dell’Azienda Ospedaliera di Padova
ARSI-ONLUS Associazione per la Ricerca sulla Sordità Infantile
Karl White, PhD, Director, National Center for Hearing Assessment and Management (NCHAM)
Mary Pat Moeller, PhD, Director Center for Childhood Deafness
Lenore Shisler, MS, NCHAM, Utah State University
Christine Yoshinaga-Itano, PhD, University of Colorado/Boulder
Cheryl DeConde Johnson, PhD, University of Colorado/Boulder
Leeanne Seaver, MA, Hands & Voices
Janet DesGeorges, Hands & Voices
Pauline Walker, Deputy Director Families NDCS
Gwen Carr, PhD
Ann Porter, Founder, Aussie Deaf Kids
Roz Keenan, National Parent Services Coord., Deaf Children Australia
Naomi Higgs, Pediatric Cochlear Implant Circle
(The Empress)This picture was taken just before my meeting with the CDC to discuss possible options in global parental support. Unfortunately, the scope of the meeting shifted to electronic health records, which is not on my agenda. I hope that we can find a way to meet our goals together. In any case, I met some incredible people and it was an experience.
Well, I arrived in Cernobbio, and I'm thinking how am I ever going to find the women in my life...and then suddenly, there they were-running towards me!
One of the greatest moments was when the six of us- GPOD women- had dinner together and talked about our Deaf children. Doesn't matter which country you live in, life and Deafness go hand in hand globally. Each of our kids is at a different point in life, and each story was an emotional moment. Extremely touching- siblings. Sofia used to put Barbie pink bluetooth in her ears to be like her brother. Other siblings couldn't stand each other because of jealousy- how ironic for a hearing child to be jealous of a deaf sibling...but our kids with disability condition our lives in such a way that we realize only years ahead. Being able to discuss this aspect with another parent, makes you more aware of how to parent more effectively and inclusively.
One word- LIMONCELLO.
I HIGHLY RECOMMEND IT FOR TEARY, DEEP CONVERSATIONS WITH SOUL SISTERS.
In sessions filled with leading researchers, Audiologists, Cochlear Implant Surgeons, ENTs, Pediatricians, Directors of NHS programs worldwide...
YOU, THE PARENTS, WERE PRESENT, TOO.
WE WERE NOT SHY.
MORE COMING SOON....
Monday, June 7, 2010
I had a picture to go with this post, but it was too touching to share. I'm on a train heading for the NHS Conference in Cernobbio, Como, digesting the news that a red-headed, intelligent, full of life 21 year old only child was killed yesterday in a motorcycle accident.
It's been since Saturday that I've wanted to write about something that happened at Jordan's school, but I haven't had time - been trying to prepare for the Congress, wash clothes, be a mom and sunbathe.
After this news about the 21 year old, I see the picture in a different way and I can't.
But this is what happened on Saturday...
I received a phonecall from Jordan's support teacher at about 10:30 am as I was on my way to the beach for an hour and a half to unwind. She was extremely upset over something Jordan said to her. See, it was the end of the year market at his school and he was selling stuff to raise money. Apparently, he shot some teenage comment straight from the zit on his chin, and too proud to admit he'd said something he shouldn't have, he denied.
His teacher, who is like his mom at school, was hurt and offended because when you put your heart and soul into a child and that child slams you, it doesn't go down so easily.
Keep in mind that Jordan is exhausted and stressed for exams.
His support teacher the same.
So, I fly to the school for mediation.
Upon arrival, the support teacher greets me more pissed off than I've seen her in three years- not really pissed off, extremely indignant.
She points to proud-faced Jordan sitting behind his stand, arms crossed across his chest who glares at me when he sees me. I gently ask him to step into my office and we find a pair of cement steps to sit down on.
I said, "I'm not angry, I just would like to know what happened because your teacher called me and I've never seen her this upset."
Jordan replied, "She didn't understand. I just said for her not to touch my items and she freaked out."
I calmly said, "Did you explain that to her? Because she didn't quite get that from whatever it was you said to her. And now she's upset, why don't you just explain to her what you meant."
Jordan, head down, said, "You go tell her."
And right then and there my friends, a calm settled upon me...the type of calm that only a life's-little-teaching moments moment can provoke..
I had finished this post, then the computer shut down. I'm clicking this through, and just want to add that I did not "go tell her." Jordan spoke to her himself. They hugged in the middle school boys' bathroom.