Showing posts with label parenting. Show all posts
Showing posts with label parenting. Show all posts

Thursday, November 13, 2008

Fairy Tales and Prince Charming


"Mommy, how will I know when my prince arrives? I mean, will a prince come to kiss me like in Snow White? How will he find me?" asked Sofia Madyson with a heinous shade of fuschia lipstick smeared all over her little lips.

I looked Sofia straight in the eyes and said, "Only when you become an independent, self-sufficient gracious queen will your prince arrive...the right prince for the true you. Before you can find the true you, you will have to slay dragons, combat hairy monsters single-handedly and battle your way alone through a dark and scary forest where the land may be unfamiliar at first,
but when you have grown - you will make it your own. And if he doesn't find you, then you will find yourself."

Sofia looked me up and down, curtsied and said, "Mommy, you don't understand anything...Babbo!!!!!!!!!!"

Thursday, October 9, 2008

Sweet Dreams

Magic (by Shel Silverstein)

Sandra's seen a leprechaun,

Eddie touched a troll,

Laurie danced with witches once,

Charlie found some goblins' gold.

Donald heard a mermaid sing,

Susy spied an elf,

But all the magic I have known

I've had to make myself.

Tuesday, September 16, 2008

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.

Sunday, September 14, 2008

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.

 

Saturday, August 9, 2008

Drolz...Beautiful Post Re: Mainstreaming Vs. Deaf School (Baseball Version)

Hi Drolzy. (http://www.deaf-culture-online.com/baseball.html - internet cafe computer issues) *smile* We haven't spoken in a while, but I always read you when I see your posts because they enrich me. Of course you know that I am a passionate baseball fan, so this one in particular interested me.

You are such a sensitive dad, that was obvious in the language you use to talk to your child and the fact that you saw his distress in the photo. Just as an aside, I remember about two years after I found out Jordan was Deaf, and started to breathe again since we had established our speech therapy routine, I took a look back at his photos from his first ten months of life in the States. Five of my closest friends all had babies during a span of two months, so we did everything together...baby groups, Halloween, New Year's Eve, etc. In every single one of those photos, despite the young age, all of the babies in the photos were looking at the camera except for Jordan - that's how I knew he was born deaf, after all we did only get the official diagnosis at twelve months.

Photos don't lie.

And neither do Deaf children.

We sent Jordan to baseball camp, too, a year ago. Our experience was a little different because Jordan only spoke Italian and this was an American baseball camp where all of the children spoke English, we knew there would be communication issues. Luca or I stayed with Jordan and transitioned him into the camp until he felt comfortable enough to stay a couple of hours alone. By the end, he was playing baseball with his peers, high fiving, sliding and getting physical with the boys...he had fun...but...

He had the sad look every now and then, too.

In some photos he was rip-roaring happy

In others he looked a little lost

Maybe it was because we introduced Jordan as being from Italy and only speaking Italian, but the ironic part of it all was that his teammates did not realize he was deaf (despite the fact that he wore his ci all the time - that's kids for ya). They just thought he was Italian and couldn't understand or speak the language very well. I know this because the last day of camp, his ci batteries went dead. As I was changing them, his teammates tried talking to him, and I explained to them that Jordan couldn't hear them until I finished changing the ci batteries. Reply: "You mean, he's Death?"

By the end of the experience Jordan had learned some new vocabulary, and so had the American kids. He also learned some important social skills and came back to Italy proud of his American baseball camp experience, where he found his whole Italian team waiting for him.

Safe at home...
In Italy.

Saturday, July 12, 2008

Deaf Peddler Number 2


I'm stuck at home on a hot as butt day here in Grosseto, because my kids were too tired to go to the beach. We are the ONLY idiots in Grosseto sitting home. Of course, now they're bored and driving me crazy, so I'm seeking shelter in my blog while Jordan complains and paces and Lola pees all over the house.

Last night, Luca and I went to dinner in Punta Ala, a touristy beach town about twenty-five minutes from where I live and began discussing all of these recent developments that have occurred since the NHS 2008 Conference. I started running down my list of ideas about how to "change the world," when a Deaf Peddler dropped off one of the typical cards stating: "I AM DEAF. I am not asking for handouts, just a little bit of assistance from you to be able to live with dignity in this society. I would like to offer you these objects for the price of 4.00 euros (each)(if you would like to offer additional assistance, that would be up to your good heart)"

I didn't feel the need to vomit this time...I just felt really sad. This young man was from Russia, he sprinted around the restaurant quickly dropping the cards and items from table to table and then quickly collecting them. He was working hard. We bought the brightest flashlight I've ever seen for 5 euros. And he went on his way.

Nor did I feel sorry for him, because he was working hard and actually looked satisfied with the work he was doing. I just didn't want or envision that future for my son.

We are extremely fortunate to have access to excellent healthcare, free healthcare. My son has opportunities that people in smaller countries do not have. I will be speaking at a conference in Bulgaria in September regarding the fact that raising a Deaf child is a 50-50 shared responsibility between the Health Professionals and Parents- I'm very curious to see that healthcare reality. (and Bulgaria *smile*)

Choosing to provide Jordan with amplification was a no-brainer. Choosing the cochlear implant was a very difficult decision, because of Jordan's individual situation. However, I wouldn't think twice about implanting my twelve month old child and yes, teaching the child sign language as a bridge where necessary.

I had a conversation with our child psychiatrist who gave me a Powerpoint presentation he had prepared for a speech on Pre-School Aged Deaf Children: Oral Methodology or a Global Approach? He wrote: Only a global approach that recognizes the necessity to amplify, other than the linguistic competencies, also the communicative, cognitive and intercommunicative competencies guarantees the harmonic development of the deaf child.
*And*
Only a global approach that favors the proper integration and consistent monitoring of the language acquisition process by means of holding meetings, discussing programming and evaluating work performed by the many professionals involved in the process guarantees a context in which it is possible to carry out all specific training necessary for acquiring vocal language.

I really don't think the Russian guy peddling's parents had access to a healthcare system or health professionals like ours in Italy or my child psychiatrist, who were willing to approach deafness and the deaf child...globally.
Although, maybe I'm wrong.

Saturday, May 31, 2008

Hmmm...They're Gonna Let Me Speak:)))))

LISTEN TO THE MUSTN'TS

Listen to the MUSTN'TS, child,
Listen to the DON'TS
Listen to the SHOULDN'TS
The IMPOSSIBLES, the WON'TS
Listen to the NEVER HAVES
Then listen close to me-
Anything can happen, child,
ANYTHING can be.
(Shel Silverstein, Where the Sidewalk Ends)

I have been invited to speak during the Official Welcome Ceremony of the NHS 2008 Conference in Cernobbio, Italy (June 19-21)...before 600 international medical professionals.

*smile*

La vertigine non è paura di cadere...ma voglia di volare. (Jovanotti "Mi Fido di Te")

Friday, May 30, 2008

When Listening to the Child Requires Choosing ASL


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

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

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

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

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

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

Friday, January 25, 2008

This One's for the LADIESSSSSSSSS with a Tribute to Karen Putz - Go Girl!

I have had the most bizarre day! I went to teach my pre-school class and they WERE OUT OF CONTROL! In fifteen years of teaching I have never not been able to control a class, today was the exception to the rule. I tried everything! I jumped, danced, sang, pulled out the Mr. Potato Head, hokey pokeyed, read a book until finally, I whipped out a coloring sheet and sat their insane 3,4,5 year old butts down. The country is going to hell! The President was forced to resign amidst fighting, fainting, cursing, immature senators. And then, there was my middle school group. The oldest, Simone, who is in his first year of high school, strutted in with his "motorino" (in Italy, 14 year olds can get a license to drive a motor scooter)helmet on his head thinking he was all that because he was DRIVING and free! I made him feel like he was all that...so cute, so distracted. We were working on the present continuous and present simple forms of verbs used as the future tense...struggling to teach them something. I gave up when Matteo drew a funky looking face on a piece of paper, put it in front of his own face and started talking. I lost it...just one of those days. I gave up and we played "go fish" while I tried to translate the latest Britney Spears song for Gioia - also out of her mind. What is with today?
I'm sitting here typing at my friend Rhonda's house, because I've been out all day and don't have time to go home...the kidlings are sleeping at the mil's, hubby's out at football practice, so I'm thinking tonight might just be a night out with the ladies, I seriously need one of those.

I had an interesting conversation with a teacher this morning as the mad preschoolers calmly colored. She is in a crisis because her son has accused her of doing too much for him as a child, basically he's blaming her for his failed marriage. His wife left him and he is playing the victim. He claims that the fact that she was always cooking, cleaning, teaching him to be a good boy - do well in school, never put your hands on another child, feel sorry for the "bad kid" in the class, share, etc - made him a dependent wuss. Meet the majority of Italian men. While the strategy of teaching your child to always be well-mannered, polite, to share, to help the next, to do unto others as you would have done unto you works in the good old USofA, it is BULLSHIT here in Italy.

Here it's survival of the fittest, meaning that if you take the soccer ball to the park and share it, you ain't coming home with it. (I interrupt this blog to give you Susie's opinion - another American who just popped into Rhonda's - loving this-)
"It's not true that they can't be polite, well-mannered, etc. but they do need to be able to assert themselves and stand up for their rights (a permanent marker is necessary - meaning write the kids names on every single thing they own- or lose it)"
This is my parenthesis - Susie is a single Mamma with three GIRLS! I have a BOY! So what does that mean? That means that I have gone from passive, let it roll off your shoulder to punch the delinquent child in the stomach. I never thought I would advocate violence, but if that is what it takes...Rhonda has just interjected with this pearl: "Don't hit first...but hit back...harder!" (dying-she has THREE boys)

Okay, maintain the calm. Jordan is in middle school. There is no reasoning with middle school hormones or delinquency. This is a passionate and very physical group of people, not a lot of intellectual reasoning regarding right and wrong in this age group. So what am I to do? Shit - so much for ladies' night out - Rhonda can't get a sitter, looks like I'm home alone:( Continuing...Jordan once had an incident at the beach where a younger and smaller kid was picking on him. Being the well-educated American child that he is, he was afraid of the kid because the fact that he was smaller prohibited him from "fighting back," so he became more and more frustrated with this kid and more and more the victim. UNACCEPTABLE! We role-played. I was the little bully and Jordan was Jordan. Luca showed Jordan how to get right in front of the kid's face, scream, "I'm gonna make you eat sand if you don't stop breaking my balls!" - put him in a choke hold and drag his face to the sand. My American side was screaming, "NO! NO! VIOLENCE NO!" My newfound don't-mess-with-my-deaf-kid side let my son scream at me, put me in a chokehold and shove my face to the ground. Hmmm. Teaching my son to be aggressive and violent, Mom would not be happy. Welcome to my world. Needless to say, Jordan used this role-playing the next day at the beach and that child NEVER messed with him again. Balls, balls, balls.

The point of this is that that teacher is re-thinking how she raised her kid and suffering. The first thing I viewed this morning - and the only thing- didn't make me vomit, but it did upset me -on deafread.com was The Ugly Truth of CIs - (really appreciated the captioning) How do you think the parents of that man feel today? What a painful story. We as parents make choices in how we raise our kids...we do what WE think is best for them at the time and suffer the consequences later. I guess it depends on how well we listen to our kids as to how much suffering we will ultimately be doing, parenting is just no easy job - and to think we beg for it!

Wahoooooo! Ladies' night is back on and there is one FINE WOMAN who I will be toasting to tonight - Karen Putz...you are THE WOMAN! DEMAND FREE SHAKES!! This song's for you...



Nicole.
Ri-Rihanna.
Ni-Ni-Nicole.
Ri-Rihanna.
Ni-Ni-Nicole.
Ri-Rihanna.
Ni-Ni-Nicole.

Gonna win it no limit, strong women we are.
Gotta win it no limit, strong women we are.
Gonna win it no limit, strong women we are.
Gotta win it no limit, strong women we are.

Chorus
Where them girls at. (Girls at).
That like to be in charge.
When the heat get too hot, they just keep turnin’ it up.
Never let ‘em see see, that you sweat, gotta go hard.
Where those winning women thats really willin to take it off!
Where them girls at. (Girls at).
That like to be in charge.
When the heat gets too hot, just keep turnin’ it up.
Never let ‘em see see, that you sweat, gotta go hard.
Where those winning women thats really willin to take it off!

Verse One
Uh-uh-uh-uh huh.
When you see both of us on catwalk representing our culture.
Uh-uh-uh-uh huh.
Well the time and day has changed, where the women wear the pants without changing the last name.
Uh-uh-uh-uh huh.
Where the word diva, diva, mean viva, viva, we run las vegas.
Uh-uh-uh-uh huh.
And then the stock exchange, bang, Than we got claim to the change.

All, all, all a girl want, wants.
All a girl need, needs.
Its just all those, simple things like to be cared for.
Just to have him, be there for.
All that matters, it’s those sweet things.
That’s all a girl really wants.
[Winning Women lyrics on http://www.metrolyrics.com]


Chorus
Where them girls at. (Girls at).
That like to be in charge.
When the heat get too hot, they just keep turnin’ it up.
Never let ‘em see see, that you sweat, gotta go hard.
Where those winning women thats really willin to take it off!
Where them girls at. (Girls at).
That like to be in charge.
When the heat gets too hot, just keep turnin’ it up.
Never let ‘em see see, that you sweat, gotta go hard.
Where those winning women thats really willin to take it off!

Verse Two
Uh-uh-uh-uh huh.
We are too confident, me and her talk to Phil, never happen again.
Uh-uh-uh-uh huh.
We don’t wait, we get paid, for a trait holiday, we sip lemonade.
Uh-uh-uh-uh huh.
Instead of doing what he wants, we do what we want, buying homes in Geneva.
Uh-uh-uh-uh huh.
Like when the sound baby glance, rings, and that means more than things.

All, all, all a girl want, wants.
All a girl need, needs.
Its just of those, simple things like to be cared for.
Just to have him, be there for.
All that matters, it’s those sweet things.
That’s all a girl really wants.

Chorus x2
Where them girls at. (Girls at).
That like to be in charge.
When the heat get too hot, they just keep turnin’ it up.
Never let ‘em see see, that you sweat, gotta go hard.
Where those winning women thats really willin to take it off!
Where them girls at. (Girls at).
That like to be in charge.
When the heat gets too hot, just keep turnin’ it up.
Never let ‘em see see, that you sweat, gotta go hard.
Where those winning women thats really willin to take it off!