Please Ask Your Hearing Kids with DHH Siblings...

Dear All,
Leeanne of Hands & Voices is preparing a study of hearing kids with DHH siblings. Please take five minutes, ask them these questions and either respond by leaving a comment or email the response to jodi@rallycaps.net You may find some answers that surprise you, or this may give you the opportunity to have a really fine heart to heart with your hearing child:

1. What do you tell your friends about your brother or sister’s deafness or hearing loss?

Sofia (6 years old): When we are at the beach, I tell other kids that he can't hear them because he doesn't wear his cochlear implant on the beach.

2. What's the weirdest question you have ever been asked about your brother or sister?

Sofia: What's that thing on his ear?

3. If you could change one thing about your sib (or your sib’s hearing loss) what would it be?

Sofia: He needs to stop annoying me and pinching me. He has to stop putting his Playstation on while I'm watching a cartoon.

Note: Since Sofia has started first grade, homework time has become a nightmare. Her favorite expression has become..."You always help Jordan, and you NEVER help me."

Hmmm.

Um, Val...your situation has me a bit perplexed. Gage and Brook are both hearing and deaf, so what's your take on this?

Mother Warriors

(Don't know what happened, two posts got mixed together-anyway, this is what was supposed to come through)I know that many parents go through a mourning period when they find out their child is born deaf. They feel guilty, they feel like failures because they did not create the Perfect Child. Who is the Perfect Child? Perfect is boring. Raising Jordan amidst my friends with hearing children, I became increasingly more sensitive. My friends spoke of their child's progress, accomplishments, achievements...and I remained silent.
"Oh, my child won the Spelling Bee."
"My child got into private school."
"My child loves doing homework."
I was thinking...my son can go potty, he learned how to say the "S." So, I shared my satisfaction with my speech therapist and my son. Then, I found the Pediatric Cochlear Implant Circle and they truly understood our successes, even the smallest most insignificant success. It's so nice to be comprehended.

Naomi, one of the founders of the CI Circle and a fellow "Mother Warrior," writes a blog, and this was one of her posts:

He has no damn right to be that bright
Lovin this title and it came from a really good friend of mine and was made in reference to A.
Yeah he is a bright cookie, in spite of my parenting....afterall grown up mature responsible adults don't go around mimicking the voices of the Lego Darth Vader in the cafeteria video off the net, now do they??? well at least one does : - )

So the senior years of high school would be hard enough for any student without a hearing loss. A never does anything by halves, let's just make it even more interesting, let's see if we can have a go at the International Baccelaureate program (IB). The IB has as a component a foreign language and it is a compulsory requirement for the program.

He started Italian about 9 weeks ago. Last week was his first oral assessment. In true A fashion he put the time in preparing for it and wrote it all out. With spaces between lines it was about a page of writing. He had to introduce himself, his address, who is in the family, pets in the family and something about each member of the family - me he chose the word "bizarro" - yep and I love him too!!!

He cruises into my office at the end of the day and I asked him how the Italian oral went. He gets this flustered look on his face, runs his hands through his hair - at which point I am about to hyperventilate worrying about him - just as I am about to tip over the edge, this huge grin crosses his face and he jumps in the air, arms thrown upwards and a "Mum I aced it!"...

On the Oprah show, Jenny McCarthy said, "You've got to feel it to heal it," not an easy task...but such true words. As Mother Warriors we are mothers who are eternal optimists, who see the positive in every single experience we live with our kids...we grow with them.

Touched

Jordan Has a Girlfriend

Way too much drama in the comments section of yesterday's post, you know who you are (*smile*) so I'm taking a break to talk about Jordan.


On Thursdays he has his guitar lesson after school with an hour break for lunch, so I always take him for pizza and peach tea to his favorite pizzeria in the center of Grosseto. We spend a quality hour of Mamma - growing boy time and discuss "the latest." "The latest" is that Jordan has a girlfriend. She is adorable, her name is Alessia. There is only one problem, he refuses to discuss his new girlfriend with his meddling mother...me.



Our lunch conversation:


Me: So, you have a girlfriend...but really?




Jordan:

Me: Jordan, come on, tell me something...have you kissed her?

Jordan:

Me: Jordan, do you remember when you were DYING to ask Benedetta to be your girlfriend and I helped you find the words to profess your undying love??? Give it up to your Mamma!

Jordan:

Me: I don't believe that she's your girlfriend. I don't believe you, you always tell me everything and suddenly you're quiet. I DON'T BELIEVE YOU! *attempting reverse psychology*

Jordan: Mom, I'm a "guy" now, I can't discuss certain things with you anymore.



Me: (falling off of chair) Uh, okay...for now.

Breaking news:

Luca and I just had an emergency meeting locked in the bathroom where he handed me a series of crumpled passed notes. Last week, loverboy had asked Martina to be his girlfriend and she had said no.

Note #1:Martina, for now I need to leave you, sooner or later we will be boyfriend and girlfriend, but for now I must ask another girl to be my girlfriend. (he drew a pair of red lips on the note-what a stallion)

Marty: WHO?

Note #2: Alessia

Marty: NO!

Jordan: It's okay, I just said I was going to try.

Note#3: It's just for now, Marty.

Marty: Okay, but if you want to hold my hand, you can.

Note#4: WHAT??!!! You want me to hold your hand!!?

Marty: If you want to hold my hand you can.

Jordan: Ok

Note#4: (for Alessia with a heart drawn on it) Well, have you decided? You are beautiful.

Alessia: she x-d the Yes.

Done Deal.

(Note from a pissed off Mamma: I guess this type of stuff has been shifted to Father-Son instead of Mamma-Son *steaming*)

I couldn't decide between the two *smile*

Disney Pass: From the Mouth of a Child

Thank you to the mother who posted this on the Pediatric Cochlear Implant Circle...

Posted on Mon, April 28, 2008
Encountering someone different
By Dan Gottlieb
What is your first instinct when you see someone who is disfigured, deformed or just plain different? To look away? To react by rote?

Many years ago, waiting to meet a colleague, I was sitting in the lobby of Hahnemann Hospital, my briefcase on my lap, drinking a cup of coffee - when a woman in an obvious hurry walked by and put a dollar in my cup! She clearly didn't see a man in a wheelchair. She saw someone who was "different," and responded quickly.

I tell this story frequently because it teaches us so much about ourselves. Our brains are hardwired to react instantly to members of our species who don't look or behave the way they "should." When we encounter someone with a disfigured body or acting in ways that don't fit the expected norm, we feel distress.

It happens so fast that we don't even know what we're feeling. Our first instinct, however, is to find a way to diminish our distress. That's why, when I go into a restaurant, the hostess will often ask my companion, "Where would he like to sit?" The hostess makes eye contact with my companion in order to lessen the stress of facing someone who is "different."

Sometimes our reaction to the distress takes the form of anger or harsh judgment. Parents of children on the autism spectrum (this happened frequently to me with Jordan) tell me that when their child becomes agitated in a public place, they frequently get critical looks or even patronizing comments. The reason: Affixing blame can help diminish distress caused by the unusual behavior of others. It makes the world feel more orderly.

There is a price, however, and not only for the person who is judged or ignored. Stress is a symptom; diminishing it by judging, criticizing or ignoring others is merely a form of symptom relief, like having a stiff drink.

So what can we do? Since stress is hardwired, allow yourself to simply experience the stressful feelings without trying to avoid them. Make eye contact if you can. (This gets easier with practice, as anyone who works with disabled people can tell you.)

I have always believed that if you look in someone's eyes, you can find their humanity - and in that process, you can learn more about your own. If that woman in Hahnemann's lobby had been able to look into my eyes, she would have seen a fellow human, a quadriplegic who in fact has a great deal in common with her.

And one other thing about those of us who look or act different. My grandson Sam, who is on the autism spectrum, is almost 8 years old. He is generally doing well in first grade but still struggles in some areas. Recently he had some classwork that he didn't understand. Embarrassed about his difficulty, he took his book home without asking his teacher. When he spoke to his mother, not only was he embarrassed about not understanding the homework, he also felt guilty about taking the book home.

In order to assuage Sam's guilt, his mom explained: "Sam, they have a special piece of paper at school that says when you have trouble with your work, you can ask the teacher and she will give you extra help. And if you still have trouble, she will call me and I will help also."

But Sam didn't feel better. He began to cry: "Mommy, I don't want a special piece of paper."

Sam speaks for most everyone who is "different." None of us really wants that special piece of paper.

Mishka Outraged! Deafness and Disability: The Disney Pass

Paotie - hold onto your pants! I have never, in the eight months that I've been posting on deafread.com read Mishka get so passionate about an issue. She takes great pride in her ability to remain objective. The idea of Deaf individuals taking advantage of the system by using handicapped parking spaces or a Disney disability pass to avoid waiting in lines for rides REALLY pissed her off. Such a refreshing change.

Here she goes:

I was raised to be equal to my peers. I wasn't treated differently because I couldn't hear.
No, I will not use a pass because I am deaf. In fact, I will get infuriated if I see a healthy able-bodied deaf person using a pass to cut short the lines to the rides.

You see, I am also physically disabled. I remember one time Deaf people being surprised that I have a pass and demanded why I have it. They didn't believe me when I said I am physically disabled (talk about an invisible disability)

Here in MD, the Deaf Community tried to convince the State Assembly to pass a law permitting Deaf people to use the handicapped parking spots. When I found out, I was outraged. They can walk. Their excuse is that they cannot look back. Oh, really? Bullshit. You can use my eyes around and use common sense. I call that taking advantage of hearing people's ignorance to abuse the system.
Because I know what it is like to be Deaf and what it feels like to be Deaf and physically handicapped. There is a very BIG difference.

Yes, if I see a Deaf person abusing the handicapped parking lot or using the pass for rides, I will confront them. Using the pass for shows is a different story because they do need good seats to hear the performances.

Rides, hell no way!

As you can see, I feel very strong about this.

::::Stepping off my soapbox::::

There's more...

Well, legally deaf people are disabled, but they are NOT physically disabled that they wouldn't handle long waits. Shows and movies, I totally can relate to that because the Deaf people need the front seats to be fully accommodated. But regular rides? Scoff. Handicapped Parking? Scoff. I would be embarrassed if I abuse the system if I don't need itIt's not the way I was raised.. taking advantage of a system at the expense of others. Remember I said the physically handicapped people paid a price afterwards because they were forced to wait longer when hearing people saw how healthy deaf people were abusing the passes. They are not stupid and naturally they gave the employees a lot of grief. There are consequences when there are abuses of the system.

Hmm. That Mishka is one crazy bitch and I agree with her 100%.

MOM: Is DEAFNESS a DISABILITY?

With all of the discussions generated by the posts on Ethics and a debate that has ensued on the Pediatric Cochlear Implant Circle regarding "to accept or not to accept a Disney Pass for children with Disability" on behalf of a deaf child with a ci, I am curious to know the adult Deaf perspective on such issues. While checking out Dianrez's site for one of my posts, I found this:

Why do we say we are not disabled?
How is it that we do not regard ourselves as disabled? Is it because of the way we were raised, to be not different from other people? Is it because our difference is invisible and outwardly we look and move about like everyone else? What is the origin of this "not disabled" feeling? This attitude is so pervasive that we object to any surgery or expensive devices as less-than-successful attempts to "fix" us to meet Hearing standards.

The majority of the world considers us disabled, often to our consternation. When we say we want deaf children born to us, the world hollers in indignation, "HOW DARE YOU!?" They consider it extreme child abuse. Mostly, though, Hearing people take no notice and therefore omit making room for Deaf people in their communities. In an earlier time, people would shunt aside Deaf citizens, saying with impunity, "Sorry, we have no provisions for hearing handicapped people." As a child, I was taught, "it's a hearing world and you must adapt to them, not expect them to adapt to you." We were considered selfish and immature for thinking otherwise.

Yet, we gratefully accept special considerations such as schools for the deaf, colleges dedicated to deaf students, interpreters, government assistance, and electronic devices, among others. In seeking jobs, we willingly accept any extra help that comes our way. In public areas such as airports and meetings with public servants i.e. police, we tread with unusual care, mindful of bad experiences that our people had. Despite what we say, inwardly we seem to accept that we are different and that it means accepting help, if somewhat reluctantly.These special accommodations, some of which were legislated, are lifesavers for most of us.

Can we refuse them? Certainly we can, but what purpose does it accomplish? Will it cause people to finally believe we are not disabled as we carry on with pad and pencil, less than perfect speech, expensive aids and struggle to survive at the bottom of the employment applications pile? If we continue to insist we are not disabled, all that will happen is politicians happy to cut budgets and voters not noticing or caring.

Have those of you with deaf children or even you, yourselves ever used a "Disability Pass" to have quicker access to rides at a Disney World or other amusement park? Things got a bit heated up as parents asserted motives for using or not using the pass. Parents whose children have other disabilities in addition to deafness stated that they would never request a pass "only" for deafness. Another mother stated that she absolutely does not consider deafness a disability.

I posted this:
Re: Disney and Ethics: Pass or no PassI've been following some of the thread kind of in dismay. Deafnessis known as the "invisible" disability because it is in fact invisible. There are many ramifications associated with deafness that we as parents deal with on a daily basis. We as parents make decisions every single day to try to make the lives of our kids easier. This is not a black and white issue, this is a gray issue.

If my kid goes to speech therapy four times a week and suffers sitting in that high chair from the time he is twelve months of ageand we choose to take a family vacation to Disney to reward him andourselves for all of the fatigue and stress and work behind his "invisible" disability, I probably would consider getting that pass to avoid one more frustration in his life. But I'm not sure. Someone once said to me that when considering disabilities if a person sees another child with a physical disability, they go out of their way (if you are lucky) to help that person. How many times have you seen people frustrated or irritated by your child screaming or asking someone to repeat something that they missed? Deafness is a disability. Each child is different and each family's situation is different.Would I have thought twice about requesting a pass when Jordan was a 3 year old frustrated child? Yes. Would I request the pass now? No. Would I judge another parent for taking that pass? Never.

Another Mother wrote in response to yet another mother:

I agree that Disney having the pass is definitely a good thing. I don't think that anyone has said that it is not. For your child, it clearly is a need. For mine, though, it was not. I think the point that I and others have tried to make is that it isn't a perk we should take if we don't truly need it because it is unfair to those who truly do need it and because it sends the wrong message to our kids.

It's all in the message...how do we want our kids to view their Deafness?

FYI:
Six Flags changes its line policy for disabled patrons
Sept. 19, 2007
Six Flags Inc. has stopped allowing disabled patrons to skip to the front ofride lines and is now requiring them to get a boarding time from anattendant and return then, as any patron can do with the amusement parkcompany's "Flash Pass."The new policy took effect Sept. 7 and applies to all 21 Six Flags theme andwater parks, including Hurricane Harbor, also in Arlington, said Kendell Kelton, a Six Flags Over Texas spokeswoman.The policy was prompted by abuses, including patrons who feigned disability and others with disabilities who gave wrist bands allowing them to move to the front of lines to others who are not disabled, she said."We would get complaints from people in line or our employees," Kelton said.The change made for a rocky visit to the park Saturday for Joey Miller of Burleson, mother of Noah, 7, and Mallorie, 9. Miller said that her children are autistic and that Mallorie also has epilepsy. She said she bought season passes this year and took her children to the park eight or nine times this summer. "It is the only thing we found that they could do out in the community that brought some joy into their lives," Miller said.

Miller said she learned of the new policy when she arrived at Six Flags withher two children, two therapists and a niece. She said they had misgivings but decided to give the system a try. She said they went to a ride, booked a time to return and then left. But that didn't make sense to her daughter, Miller said. The girl threw herself on the ground and bit her therapist, Miller said."My children don't understand time," she said. "The things that are reasonable to us make no sense to them. Anything more than five or 10 minutes can be a screaming meltdown for my kids.""I knew we couldn't go through this on every ride. The stress could bring on a seizure for my daughter," Miller said. Park officials, however, said they hope the extra step -- having to make an appointment -- will cut down on cheaters and be fairer for everyone.

The Flash Pass option is essentially a reservation. Guests wait as long as everyone else is waiting, but not in line. Guests can leave and then comeback and get directly on the ride. Similarly, Disney theme parks offer a "FastPass." Most rides and attractionshave handicapped access, but in most cases guests with disabilities have towait in line like everybody else, said Andrea Finger, a Disney theme parks spokeswoman. Disney parks, however, may provide different accommodations depending on thedisability of their guests, she said.Policy for disabled park patrons Six Flags Inc. no longer allows park patrons with disabilities to move to the front of ride lines. Under the revised policy, guests with disabilities should seek a Flash Pass reservation and return to the ride at that time to avoid waiting in line.

Evolution of a Life...Mine

One year and a half ago, my life consisted in this:
1. Wake up, dress children, scream for twenty minutes insisting on the tedious brushing of the teeth, cereal and milk them and send them on their way;
2. Cappuccino with Sonia and a cigarette;
3. Arrive at the pre-school, Mary Poppins bag slung over shoulder, two hours of singing and dancing the Hokey Pokey;
4. Run home to prepare pasta;
5. Sprawl out on sofa to watch the Bold and the Beautiful in Italian, while eating ice-cream with a spoon out of the container;
6. Begin afternoon lessons with frustrated Italian students, share my worldly experiences with them to assist them in the development of some sort of larger view of life and assist them in chewing the English Tongue;
7. Prepare dinner, something inedible, obviously;
8. Scream at children to take showers and yell at husband for some reason or another;
9. Lay down next to husband to watch television program of the day...hopefully Gray's Anatomy, House, Lost or Medium;
10. At the end of the program, I look at husband, he looks at me. Sex.

Routine. Again and again and again and again and again...day after day after day after day after day.
B
O
R
I
N
G
.

I have been complaining about being in limbo for the past six months, but I prefer the limbo condition to the routine. I haven't watched a television program in nine months, I've been on the computer writing, meeting people, helping people, finding my way. I have cried, suffered, laughed, danced, learned and finally begun reading during this period. Reading. I never had time to take a freaking shower. That's okay, it's part of raising children. But now, after ten years of dedicating myself 100% to my kids and family, I take a thirty minute shower, feel that water running over my naked body and have found a little bit of peace.

Shit.

I have decided to hang up the Mary Poppins bag and concentrate on doing something I like that will help other people and their children. (Note: I haven't started getting paid for this endeavor so feel free to start clicking on my google ads *smile*) I am determined to become a parent advocate for Newborn Hearing Screening in Tuscany.

I have plans. And another thing, I'm moving forward on my second book...been procrastinating too long.

I can't be a good wife, mother or daughter if I am not a good Jodi.

I have lived as a reflection of those who surround me. Sick of that.

Schopenhauer's Porcupines
A group of porcupines, on a cold day, huddle closely together to protect themselves with their body heat. In the beginning they feel good, but after a little bit of time they start to feel the spines of the others, so they have to back away to avoid the pain. Then that need for heat causes them to huddle closer once again, only to separate again because of those spines. In this way the porcupines are continuously pushed back and forth between two evils.

The defects, habits, behaviors and needs of others are the spines, everyone has his or her infamous baggage. Some porcupines, however, are able to produce a great deal of internal heating. These are able to find just the right distance from the others even to the point of remaining alone.

I don't want to need the heat of another person, I would like to generate my own.

Any idea what's on tv tonight?
I
have
no
clue.

Man With Usher's Syndrome Travels With Deaf Teens: Destination Costa Rica

Hello,

I wanted to share this exciting new project with you and see if you would be
willing to forward this on to educational people or any students that you
may know across the country.

This program is amazing and changes kids lives. I am a "Lead The Way"
mentor that goes with the kids and helps them on their adventures and life
journey.

The model is proven but it is the first hearing impaired/deaf group we have
taken. We do not have a lot of contacts in the hearing impaired and deaf
community across the country to make kids aware of this opportunity. Since
you live in this world and have access to high school students I am coming
to ask you for help in getting the word out.

Simply sending the attachment flyer and/or posting it somewhere is all that
is required. The flyer is self-explanatory as to next steps.

My name is Bill Barkeley and I am deaf-blind with Usher's Syndrome Type 2.
email: billsmessage@comcast.net

Costa Rica is home to some of most spectacular and accessible rainforests in the world. From parrots to howler monkeys, poison dart frogs to tree sloths, its mountain and coastal ecosystems host amazing diversity. In this Leading the Way program, a combination of high school students who are hard of hearing, deaf and hearing, will learn field science techniques,delve into cultural studies and work hand-in-hand with Costa Rican students on a service project. Along the way, they study ecotourism and learn about sustainability and fair trade issues. In the
process, they build the independence, interpersonal skills, and attitudes that empower students to become leaders in their communities. Through this Leading the Way adventure, you’ll also help raise awareness in your communities and abroad about the culture of deaf and hard of hearing communities. The Global Explorers Leading the Way Program has been featured on ABC Nightline, the Travel Channel and CBS Sunday Morning.

Lead
Step outside your comfort zone as you build your own leadership skills and interact
with students with and without disabilities.

Learn
Explore new cultures, understand global conservation issues, engage in community service and step up to become a responsible global citizen.

Live
Experience the joy of travel and discover the power that you have to make a difference in the world.

Important Details

Application Deadline: November 1, 2008
Application Process:
We seek high school students who are deaf or hard of hearing. You will be joined by a group of hearing students who have been learning sign language for the past year. To apply, contact 877-627-1425 or leadingtheway@globalexplorers.org and ask for an application to the Leading the Way Costa Rica 2009 Program. Learn more at
www.globalexplorers.org by clicking on Costa Rica or reading about Leading the Way.

Nominate a Student: Contact us with the details and we’ll follow up with the student.
Price: $1,995 (We FUNDRAISE with you!)
Travel Dates: Spring 2009

The Global Explorers Experience
If a single trip could change your life, would you take it?

Nothin' Sweet About Me...Today

There is nothing worse than being in a pissy mood when you aren't pms or raggin' it, when everything in your life is starting to come together, when your kids are healthy, thriving, playing and learning. I can't exactly identify the source of my mood, I'm just feeling restless. I've been reading a book in Italian, maybe that's the source of my agony. My friend Rosy handed it off to me, told me to read it, that I might find it interesting.

What is interesting is that I've managed to find the time to read. God, I used to devour a book a day, reading by nightlight until I finished it, determined to get to that last page. Don't quite know how it happened, but suddenly, taking a shower became a luxury.

Since my little thirty-something crisis began, I've managed to calm down quite a bit and I'm finding a new road that needs traveling, one that I am determined to travel. So anyway, I'm reading this book by a guy named Fabio Volo (really funny parts...talks often about how and why men spend SO MUCH TIME IN THE BATHROOM - Note: I have removed all magazines from the bathrooms and I'm seriously considering adding a timer, as well. Things are really bad, because even Jordan at twelve has increased his potty time to about twenty minutes a movement)called "Un Posto Nel Mondo" - A Place in the World. I am still freaking trying to find mine. Anyway, one of the parts that smacked me upside the head was this:
Porta itineris dicitur longissima esse (latin): "The door is the longest part of the journey" meaning the first step is the most difficult to take. I've actually managed to get my hand on the doorknob, turn it and take a peek. So far, so good.

My world is a much better place when it's upside down...been lookin' at things right-side up for far too long.

Back to School...

Sofia Madyson started First Grade three days ago...

Getting ready to leave for the big day!

Do I really have to carry this HUGE backpack?

Almost ready to go into that big, scary school!

I'm in!...but I'm kinda skeptical 'bout this whole homework thing.

Got my best friend Federica right here next to me!

Just a kiss to Babbo...

And I'm ready to Rock-n-Roll!

Hmmm. Think Jordan's ready for his second year of Middle School?

Ummm.

...I think he'll do just fine *smile*

And...Once upon a time...a LOOOOOOOOONG time ago:

My first grade class! OMG.

Ethics and Deafness: Dianrez Weighs In

 

Dianrez asked some thought-provoking questions:

Take the child who was born deaf and admire how physically perfect he is. He runs, skips, analyzes, critically examines, laughs and cries. What, you say he is not perfect? Because he can't hear?

Me: Why shouldn't he ALSO be able to hear?

Take your own motives. You want to give him what you already have and hold precious...the ability to hear and communicate. What, you think he won't be able to do so otherwise?

Me: Without his amplification he would not have been able to communicate with his peers...or hear.

Isn't a different method of "hearing" and communicating just as good? Why or why not? Be aware that your own prejudices are coloring your thoughts.

Me: There is no different literal meaning of "hearing" - you hear or you do not. Figuratively speaking, I could "go there," but I'm focusing on the literal. Additional methods of communicating are always welcome. I am not prejudice in regard to deafness, I treat my child as an individual and address his personality and needs.

Take the child's own motives. Will he appreciate the artificial hearing, an imperfect and incomplete method of communication, being surgically implanted with an unknown level of risk and unknown future of complications? Or will he appreciate being cherished as he is, healthy and Deaf, and given all the educational advantages that you would give him anyway using other methods?

Me: I cannot comment on a new mother's situation without knowing about her family or the specific child. Given where the technology is at this point in regard to the ABI, I would have to really be convinced to have that operation performed on my child. In regard to our experience with Jordan, he has always "heard artificially," has only complained when the batteries die and is utterly cherished for the person he is...healthy, Deaf, American, Italian, big brother, beach-volleyball player, stubborn adolescent middle school student.

Will he appreciate a possibly marginal relationship with the hearing world, always a little bit off in timing and comprehension in many situations, and/or will he also enjoy the rich and emotionally satisfying interaction with other Deaf people?

Me: He doesn't "appreciate" his relationship with the hearing world, because it is all he has ever known. We take many things for granted. He enjoys rich and satisfying interactions with other deaf individuals all of whom are amplified and speak. One day, I am sure he will learn sign language and explore the Deaf community, that is not our reality at the current time.

Will he end up a poster child for surgery, forever justifying and demonstrating its benefits; will he become a fully featured hearing person with no thought to the upkeep, maintenance and surgical replacements he will have to go through? Will he have time and energy left over to become a whole person in himself?

Me: He is already a "poster child" of his own free will, he doesn't need me to express his thoughts...he has a voice of his own. And people do not need me to translate his words any longer. We'll deal with the surgical replacements when the time comes, no one said this was an easy process. Is anyone ever really a whole person...I'm still searching for me - I think that's what makes life a continual growth process.

In giving him a gift with many qualifications, are you actually trying to impose an idealized version of the child you wanted, or a miniature version of yourself? Is it so hard to accept him for the way he was born, an intelligent Deaf child with huge unexplored potential?

Me: *smile* God forbid that I create a mini-me. If you limit his ability to hear and receive the greatest number of messages possible (many of which are received auditorily), you limit unexplored potential.

These questions may seem harsh, but consider that the teenager you will have may ask them. Certainly most Deaf people think these, especially after they are given aids or surgery by the people in their families.

Some parents will just dismiss this and merrily go on, confident that their research and calculations of the pitfalls and risks are correct...after all, what do deaf people know about the hearing world?

Me: Rhetorical question?

Indeed, what do you know about the deaf child himself? What do you know of his world after he grows up?

Me: I only know my deaf child and he's teaching me more and more on a day to day basis. I will always be a part of his world - I'm a meddling mamma.

Personally, I have found myself moderating my opinions on surgical treatment of deaf children with the increasingly vocal parent and implantee community coming to the forefront in recent months.

Me: This gives me great pleasure! *smile*

Then an article comes up that talks about brain surgery and I wonder again about the extent to which people will go to in order to achieve their ideal child.

Me: I agree 100% (It took me the whole comment to get here, but I agree)
However...a parent has the right to choose.

Ethics and Deafness -Carried Away by Technology

 

Hmm. Your child is born deaf and you are hearing. You try to learn sign and you realize that it feels unnatural. Your friend starts telling you about this amazing deaf child who can speak, sing, play the guitar, etc. thanks to this amazing operation and a device called the cochlear implant. You find out that your child is not a candidate for the cochlear implant because of inner ear malformations. You hear about an incredible new operation called an Auditory Brainstem Implant. This will allow your child to hear and eventually speak, despite the malformations. And what do ya know...they perform the surgery right here in Italy. Then, you read about this child:

After an operation to restore his hearing, Jorden Flowers is ready to learn to listen


JORDEN FLOWERS was born without auditory nerves and ear canals. An auditory brainstem implant surgery - a procedure not approved by the FDA for children his age - has allowed him to hear and speak. But now he must learn to use what he has gained.

By ASHLEY BELAND, The Times-Union


Determination and motivation are two words 5-year-old Jorden Flowers can't say.

And he's shown his family, friends and teachers at Clarke Jacksonville that their meanings don't lie in the sounds you speak.

Jorden, son of Olympic gold medalist Vonetta Flowers and Johnny Flowers, was born without auditory nerves and ear canals. His twin brother, Jaden, was born healthy, despite the pair being born at 30 weeks.

"We didn't even know [Jorden] was alive after the doctors came in," Johnny Flowers said. "They started talking about the complications with premature births. They painted a really dark picture of his future."

But the 2-pound, 9-ounce Jorden pulled through.

That was the first sign of the determination that has become synonymous with the youngster's character. Many other signs would follow, as Jorden became what doctors say is the first American child to undergo an auditory brainstem implant that allows him to hear.

The family began researching Jorden's condition and treatments for his disability. Vonetta Flowers said they immediately started to learn sign language so they could teach Jorden to communicate.

"His first sign was 'milk,'" Vonetta said. "It was funny because he'd do the sign in the middle of the night like he expected you to be watching."

While many babies were watching Teletubbies or Sesame Street, Jorden was watching tapes designed to teach babies to sign.

After a couple of years of research and referrals from other doctors, the Flowerses learned of an auditory brainstem implant that enables people without auditory nerves to hear. There was one catch: The surgery isn't approved by the Food and Drug Administration for children under 12.

The couple was undeterred and contacted Vittorio Colletti, an Italian doctor specializing in auditory brainstem implant surgeries. Colletti was the only doctor performing the surgeries on children as young as Jorden.

The surgery was costly, but Colletti waived his fees and Allianz insurance company donated more than $60,000, Johnny Flowers said. In December 2005, the family was at a Verona, Italy, hospital for Jorden's surgery.

"We spent Christmas in the hospital that year," Vonetta Flowers said. "We were very grateful because usually Christmas is about presents, and we saw Jorden's surgery as the greatest present of all."

Jorden's brain had to heal before the implant could be turned on. He heard his first sounds on Jan. 23, 2006.

While the implant allowed him to hear, it didn't teach him how to hear. That's when Clarke Jacksonville stepped in.

After a trial summer program with the school, the family moved to Jacksonville from Birmingham, Ala.

Clarke Jacksonville is one of only 53 schools in the country that focus not on sign language or lip reading but on teaching the deaf to listen, Allen said.

Since Jorden began classes in the fall, his family and teachers said, they have seen a dramatic improvement in his auditory capabilities.

"Before coming here Jorden didn't really talk, but there's been such a change," Vonetta Flowers said. "It's been very emotional, and we're constantly reassured of our decision to come here."

Jorden also has increased his vocabulary and become more engaged in the classroom, his teacher, Lynn Stoner, said. Stoner has 10 years of experience at Clarke Jacksonville, but she still marvels at the motivation she sees in Jorden.

"I think his determination, his motivation, his willingness to learn is amazing," Stoner said. "He just never gives up."

Most of the couple's friends and family say the trait runs in the family. Vonetta Flowers was the first African-American to win a gold medal in the Winter Olympics.

She used that same determination she sees in her son while training for bobsledding. Vonetta Flowers has retired from the sport to spend time with her children and family.

Despite the difficult journey from Jorden's birth to his start at Clarke Jacksonville, his parents don't regret their choices.

"[Jorden's] first language was sign language, so he could always sign 'I love you,'" Vonetta Flowers said. "... But hearing him say 'I love you' - those are the sweetest words a parent can hear, especially since I never thought I would hear them."

What would you do?


A parent has the right to choose.

 

The Man With the Bulging Eyes

I'm drained. Facebook has destroyed me. People in Grosseto think I'm a freakin' lunatic because I walk down the street and suddenly start laughing hysterically. Every single face is a funny story...with some type of drama mixed into it. I need a break.
Time
to
blog.

Theme: The People Who Come in and out of our Lives
Setting: Bar Stiacciole (Bars in Italy are coffee shops that serve liquor, pastries,cafe, cappuccino, ice-cream, cigarettes, newspapers, slot machines - this place is a hole in the wall---but it's got it all.)
Characters: Me, Sofia and "The Guy Who Gives Me the Eye"

Here's the scene. My daily routine involves having a cappuccino and a heart to heart with my friend Sonia every morning, during the summer however, the routine may vary, but the cappuccino is a Must. I think when you've been married for so long, there comes a point where you stop looking around at other people, actually you stop noticing things like...you're a woman.

However, when you go into your typical thirty-something crisis, wake up, exchange the holy sweats for a pair of really tight elasticized jeans and start strutting instead of schlepping, you begin to notice that you're getting "the eye"...again...for the first time in such a loooooooooooong time.

At first, you are shy, flattered, shocked. And you don't even give a shit that it's comin' from a seventy year old toothless man...ya just kind of revel in the fact that, yeah, you still got it goin' on.

Um. "The Guy Who Gave Me the Eye"
began this behavior about seven months ago, while I was smack in the middle of my crisis, had lost about twenty-five lbs and had that I'm waking up from my life as the mother of a Deaf Child...who the hell is Jodi phase thing happening to me.

The man was a sixty-five year old disgusting drunk who slurred when he spoke, was half bald and wore a ponytail. He had bulging eyes
...freaked the hell out of me. Every morning I went to the bar for a coffee, he would say, "Good Morning, Madam." (puke)and give me the once-over. I flinched every single time.

About a week ago, I was in a particularly good mood, actually it was the day Sofia decided to dress as a ballerina and we walked arm in arm to the Bar. Bulging eyeballs was there. Sofia and I sat outside as I drank my coffee and she played with her Barbie-doll (obviously clad in fuschia)
This is what went down:

TGWGMTE: Good morning, Madam. Are you from Santo Domingo?

Me: (WTF?)Um. No, I'm American.
Sofia: (speaking in English)Mommy, can I get a chocolate egg?
Me:(replying in English) No, Sofia, it's 9 in the morning.
TGWGMTE: Come on over here, Madam, I'd like to tell you a story.
Me:(Hm. perfect English) Ok
TGWGMTE: (pushing aside his jar of 1 euro coins won from the slot machine)I'm originally from Milan. My family was in textiles. I graduated from a college in Memphis where I studied cotton growing...the year was 1963. I arrived in Memphis the day after John F. Kennedy was assassinated and I witnessed an America in mourning. I lived in Memphis during a time when there were signs on shops saying "For Whites Only"

Me: (leaning closer to him) Hi, I'm Jodi, tell me more, please.
Sofia: (stops playing with her Barbies, walks over to our table and notices the jar of one euro coins. She eyes the coins and then she gives bulging eyes
the once-over.)
TGWGMTE: Hi, Jodi. It's nice to meet you. My name is Anthony. Sofia, you have beautiful curls, here, have one of these. (Hands a one euro coin to Sofia)
Sofia: Wow, Mamma,
I can take a hot shower at the beach! Um. Anthony, I have a brother, could he have one too?
Me: Sofia, say thank you very much.


Sofia walks into the bar to spend her euro...just like her Mamma.

Anthony: I remember driving my car just outside of town and finding a diner. I was dressed in a suit, you know how Italians dress...nothing like Americans! I walked up to the door, saw a sign that said, "For Colored People Only," didn't think twice and walked right in. Jaws dropped. They could tell I wasn't American, and I made a lot of friends right away.

A friend of mine and I decided to drive to Hollywood to visit a couple of friends of ours. We stopped in a stripclub and I met a colored lady. I asked her out on a date and she accepted. I'll never forget this. I got dressed in my suit and pulled up outside of a French restaurant, I had decided to take her to a very elegant French restaurant. As I walked to the door with my date, I read that the sign on the door said, "For Whites Only." I opened the door for my date and walked right in. All eyes following us, we sat ourselves at a table and I waited. Sure enough, the owner of the restaurant sprinted to our table, leaned over to me and whispered, "I'm sorry, sir, there are no colored people allowed in this restaurant."

As the rest of the people at that restaurant stared, I responded in perfect French, "I'm sorry, I don't speak English." Speechless, the owner walked away. Other people got up to leave; we remained and enjoyed a delightful meal.

Yes...that was an interesting time in American history. The Americans were so stupid.

Me: Yeah, we often are...pretty stupid....and then, suddenly, we get it.
Sofia: Mommmmmmmmmmmy! I have to go to the Batttttttttttttthroom!
Me: It was nice meeting you, Anthony. As you can see, we have to go...
Anthony:(raising my hand to his lips)
The pleasure, Madam, was all mine.

Taking Time Out...

to remember.

I Have Found Facebook...

At the blink of an eye, our lives become ALL about our kids:

Jordan's first kiss

God Help Me!

Paula, Julie, Lydia, Niki, Dad, etc. sent me invites to Facebook.com - even Amy Cohen Effron invited me, but I never clicked on that button...no time. After feeling like scum because I've been neglecting my friends, I finally clicked, surfed and freakin' screamed. Luca ran to the computer, saw my face, rolled his eyes and said, "See ya in another year!"
Oh
My
God

There is nothing like seeing the faces of people you haven't seen in about twenty years, I even found a long lost friend from Elementary School which would make it about thirty years. *feeling ancient*

Young Elementary School Me

Nikki, a friend from high school, called me *glamazon* *smile*
I AM HAVING SO MUCH FUN!

Junior Prom (I can't believe I'm showing this picture)

Once upon a time I lived in a sorority house at the University of MD College Park with thirty-five other girls, always an outfit to wear to go to the Vous. My first roommate was a blonde, crazy chick named Willner who wore electric blue mascara, Edwins, (and what the hell were those cowboy boots called?) smoked capris and was the first person I'd ever seen with acrylics. SHE was supercool, on the phone til late at night with what-the-hell-was-his-name, oh YEAH! Port, Jason Port- the Port-o-dog get yourself a hot dog outside the Vous guy. (couldn't stand him) Actually, if I recall correctly, he sent the police to the AEPhi house at 3 in the morning for harrassment, he was such an ass. I'm sure he has since become a model citizen.

Then, there was Karen Sher. The first day I met her she told me she loved my watch. I said "Thanks." She said, "It's a Movado." I said, "It's just got a dot on it." I never lived it down and she made fun of me because I was from Pikesville and not Long Island. I called her Shirley and she called me Muffless (that's another post-Vous, post-atomic wings, hang out in the kitchen drunk over Little Charlie's pizzas story). When she stole the stuffed animal that Luca had sent me from Italy and spread the vicious rumor that Luca did not exist,

He Exists

it was all-out war. As I was walking home from class, I noticed my stuffed animal hanging from the roof of the House.

THE House

I had to climb up on the roof to detach the rope from its neck.
So
Since Karen was famous for wearing Hanes grandma underpants, I confiscated them and taped them to the walls throughout the House.
Later that night, after showering, I returned to my room to find the three life-sized bronze statues of giraffes (the AEPhi mascot) in my bed and my room toilet-papered.
The next morning, Karen went to class with her car decorated in tampons and condoms.

Long lost Sistahs

Etc.

We found each other again...reunions can be so sweet.

OMG, Michael Schaeffer just told me to check out a posted Jr. High School...speechless!

"The Doctor" rotfl

God am I having fun!