Wednesday, April 30, 2008

Cover Girl ABBIE Rocks!!!


Not only is Abbie a hot, thong wearing, french manicure sporting princess, she is an intelligent advocate of Cochlear Implants.
*AND...*
She has just had her first article published which is a conglomeration of some of her blog-posts. Read it HERE. (must see her eighth grade picture! So cute!!) Abbie's writing style has been known to attract adoring women and goggling men, such as GEO (*smile* - live for their little flirtation goin' on...will they ever meet?)because the woman tells it like it is and adds her own creative no-nonsense style. Her colorful descriptions that we can all relate to reveal a sensitive, yet head-banging powerhouse from New Jersey.

She can be seen all over the blogosphere spreading acts of kindness and words of wisdom, and is actually quite the cheerleader!
Abbie left this comment on my blog about a week ago:

Now, I have a little favor from all you "hot mom's" with deaf kids out there :) Would you could go over to Brianna's Journey, Brianna's mom created this blog because she is having her first cochlear implant surgery this coming Tuesday and she needs support, especially from moms that have been there. Would you mind popping over there and dropping a few words of wisdom? I would really totally appreciate it!

This is what Brianna's Mom wrote as a response to Abbie and all of the moms who wrote to her blog in support of her pre-operation crisis:

A note to all you wonderful people who left me support, advise and understanding, I really appreciate it. I am so grateful to you Abbie for getting everyone together when I really needed people there with me. The support was amazing. I feel so much better about this, I have had my ups and downs, and man, you guys all gave me a great "up"! I really appreciate it, I can't express how grateful I am that when I was down and really just needing someone to be there to pick me up, you all came through.

It has been one heck of a ride so far... and the exciting part is yet to come. Wish us luck tomorrow and I will report back with Brianna's amazing bravery and strength asap!


Here's Brianna post-op!

Abbie...you are an inspiration! Congratulations on your first published article, and I am certain it is only the beginning!
BTW, live for Nirvana!!!

Tuesday, April 29, 2008

Bringing America to Monte Amiata



Hmmm. Kind of getting some of my groove back. There have been two hot bombs dropped in the form of emails in the past three weeks and I have been sworn to secrecy. I have the BIGGEST MOUTH and this is KILLING me, but their secrets must be kept. I just had to say something, though:)

What does every 50-something Italian man need? A Rhonda. I've mentioned my friend Lorenzo a couple of times on this blog, but after our adventures last Sunday, he and Rhonda deserve their own post. Let me put it this way...I felt the need to teach him the meaning of the word "Whipped." (rotfl-think he got it, but I'm not sure he liked the concept)

I have known him for the past four years and kind of acted as a sort of priest for his daily confessions. Then, I introduced him to Rhonda and she rocked his world with her Texan charm and home-"cookin'". Now, they are a very satisfied couple.

So...when Rhonda, who has three sons, had the brilliant idea to rent a CAMPER, Lorenzo actually said yes.
*Shocked*
Now, when you rent a camper, you usually have some type of trip planned with an itinerary. Nope, not this group, on Friday they decided to drive twenty miles to the beach and park the camper on a camping ground, where they pitched their tents and fired up the barbeque. Then, on Saturday they drove back to Grosseto because one of Rhonda's sons had a baseball game. Saturday night they hightailed it up the mountain, parked the camper and went to eat at a restaurant because at that point they were too tired to cook. They were "roughin' it in the wilderness!"

*We were invited to spend the day with them on Sunday*

When we arrived, I saw Lorenzo in this fleece vest manning the BBQ pit like a champ. Rhonda was busy cooking pasta with pesto, and the picnic table was set. Note: the wine was available in abundance.

They were one big happy family. Amazing. Beautiful. It can't be easy for an older man to start over with an extended family, but if there is one woman who can make it work, it's RHONDA! (la patata è roba potente)

We sat down to eat and along came Sofia Madyson who tripped over a rock, knocked into a huge branch that smacked into the table exploding a bottle of Pepsi everywhere...my girl knows how to make an entrance!

Okay. There was corn on the cob with butter (just doesn't exist in Italy-no corn culture in this country)!!! and the dream of EVERY AMERICAN GIRL WHO HAS EVER SAT AROUND A CAMPFIRE...S'MORES!!! Rhonda had brought MARSHMALLOWS straight from Texas with OMG Hershey Bars, there were no graham crackers, but we improvised with cookies. That first bite of the six roasted marshmallows I devoured, tasted like Camp Milldale-1980-skunk-and-bats-in-the-bunk-overnight where I probably had my first kiss. And Luca, the marshmallow roasting king -I always burn the suckers- got them nice and toasty brown on the outside and good and gooey on the inside.

After we finished about four bottles of red wine between the four of us, I went straight to the camper and took a really good power nap until my lunatic daughter came and woke me up to play POKER!!!
I haven't played poker since I was about thirteen. I sat down at the table and immediately bluffed my way through a kick-ass pot and proceeded to lose the next eight hands. Jordan is one of the luckiest little poker players I have ever seen. He won like seven hands in-a-row and then stopped playing because he got bored. (of course, Lorenzo was helping him)

Then, I started winning again after Luca won three in a row and Lorenzo looked at me and said, "If I sit down, I will destroy you." I said, "Bring it on, big guy!"

*So*

He sat down to play with Parker, Austin and me. The cards were dealt. I had three kings, a jack and a ten. I opened with a ten euro bet (we were playing with .50, 1.00, 2.50 and 5.00 euro chips)and Parker immediately folded. Lorenzo started looking at his cards and spreading them slowly as if he were in Las Vegas playing for high stakes. He saw my ten and raised me another ten. Cool. Meanwhile, Austin kept silently seeing all bets until he ran out of money and had to borrow some from Luca. Lorenzo and I continued going back and forth raising the pot (note: I only had three kings)until finally Lorenzo called! We flipped our cards one by one - Lorenzo and me-I was flipping kings and he was flipping nines, only I flipped three and he flipped...FOUR! POKER! He started jumping up and down and I buried my head...until...silent but DEADLY Austin said, "Excuse me...um I think I'm the winner here!" He flipped over FOUR FREAKING ACES!!!
*UNBELIEVABLE*

Moral of the day: Never mess with a Texan.

Monday, April 28, 2008

Is Deafness a DISEASE??? *WTF*


Just in case anyone had any doubts, I have learned a lot in these past months as a deafread.com reader and blogger. I have absorbed a great deal of intensity from staunch ASL supporters, pain from deaf adults with CIs who feel rejected by the Deaf community, resounding pride expressed by CI sporters demanding validation and passion from commenters ready to fight it out in order to defend their views right here on my blog. Rockin' shit! So...when the time came to finish the cover of the Italian Edition of RALLY CAPS and Cochlear ITALIA wished to write an endorsement for the back cover, I was extremely excited until I took a further look at what they had written. (Actually, I'm still excited, but just wanted to post this...)

They called Deafness a DISEASE. Unacceptable. Deafness is not a disease, it is a huge part of the way of life of my son, it is one element of who he is as an individual and I certainly do not consider him diseased or having a disease. As we have discussed many times before, words hurt when used inappropriately and flat out improperly. That word was removed from the text IMMEDIATELY.

*THEN*

I had an issue with another one of my "buzzwords" that I have already spit on many times before..."Normal."

They wanted to include a quote that read, "This book offers an example of how modern technology can help one to live a peaceful and normal life."

Nothing "NORMAL" about this family. The gentleman from Cochlear was EXTREMELY cooperative, flexible and willing to listen to my point of view. Greatly appreciated.

The final decision after consulting the Pediatric Cochlear Implant Circle for suggestions because my overloaded brain was fried at that point and I couldn't distinguish between Italian and English was the following:

This book offers an example of how modern technology can help one to live a serene life among the hearing community. (rough translation)

My points are as follows:

The Cochlear Implant companies deal with modern technology and the great task of making a reliable, effective product so that sometimes they may need a little guidance in regard to the human issues brought to the forefront because of such a product.

*And*

I am learning and becoming a stronger advocate from all of the reading and devouring I've been doing of blogs on deafread.com and personal stories shared by parents on my yahoo support groups. Basically, I'm becoming one bad-ass informed bitch. *smile*

Saturday, April 26, 2008

CI Activation - 9 Month Old Hunter AND CI CIRCLE Sends Two Kids to CI Camp!


Just got home from the movies and I was already in a good mood after watching SAAAAAAMOKIN' Matthew McConaughey for two hours, when I saw this posted on the Pediatric Cochlear Implant Circle:

CI Circle members bought enough products from my Cafe Press designs
that 2 children are going to get scholarships
to the 13th Annual
Cochlear Implant Summer Listening Camp
(a week long daycamp outside
of Dallas, TX).
I'm very excited we were able to do this!
Thank you and feel free to keep purchasing products so we can send
more kiddos!
~Pamela
www.cafepress.com/legacypress "Living Out Loud"

www.cafepress.com/legacypress2 "Silence is Golden..."

www.cafepress.com/legacypress3 "No More Silent Nights"

www.cafepress.com/legacypress4 "Fairy"
---my favorite for little
girls. :)

Camp Info:
Children ages 3 - 11 who have cochlear implants participate in day
camp activities from 9:00 a.m. to 3:00 p.m. Monday thru Friday. Each
camper is paired with a graduate student buddy who maintains a focus
on listening and oral communication within the camp environment.

SO EXCITED!!!!! We started to create a Cochlear Implant Awareness Campaign about eight months ago (Note: at that time there was only one design on Cafe Press for Cochlear Implants, now there are 96) on the Circle and now two kids will be receiving scholarships...WHAT A GROUP!!

Hunter's Activation Video...nine months old.
Hunter

Friday, April 25, 2008

Are Your Kids Passion-Killers??


Way too tired to post yesterday...added a new little dance to my teaching repertoire: The Wiggles, "Swim Like a Fish." *Damn near killed me!* What can I say? Pamela inspired me to shake it a little more. It's so funny Hokey Pokeying and Twist and Shouting with the little pre-school niblets and since my immaturity level as of late is extremely low, we kind of understand each other. Usually, the teachers run from the room as soon as they see me coming because they know I represent an hour of peace from the classroom. For some reason, the day I added this new little dance which involves sticking one hand on my head like the fin of a fish that flips and flaps and one hand coming from my butt that splishes and splashes like a tail...THE TEACHERS DECIDEd TO HANG OUT AND WATCH THE LESSON. I figure if I can pole dance at a Gay-Lesbian Bar, what's a little swim-dancin'? So, there I was flipping and flapping and splishing and splashing like a total IDIOT!

*I had so much fun!*

*The kids think I'm crazy...I am:)*

Food for thought: Children are Passion-Killers. How many times have you been in the middle of "The Act" when you suddenly have a child barge through the door? Have there been times when you've just felt the urge to hug your husband only to have your "little Miss Thang" squeeze between the two of you to "claim" her Dad?

Then, for one brief moment, let us pause and reflect. What happens to your marriage when you have a child with a Disability who:
1. drains all of your energy on a daily basis;
2. becomes the center of your universe so that all family components revolve around him;
3. requires your complete and total attention leading to system overload: Mental and Physical?

What happens when you and your husband become such a strong team and so generous with each other as to let one another "escape" from the house to go to the gym or free the brain with some other hobby, so that you start spending more time away from each other than with each other?

You go to the beach and you drink a Corona. You sit and stare at the sea while the kids collect seashells. And since today is a holiday here in Italy...I'm outta here!

HAVE A GREAT WEEKEND!!

Wednesday, April 23, 2008

Shocked!


*Paotie, hold onto your Snoopy tattoo* Well, this just confirms it! Moms of deaf kids with cochlear implants are hot! If you are a hot young woman who has not yet had kids, watch out, your child will most likely be born deaf, destined for a ci. (Just add "hot mom" to the list of causes of deafness) *smile* As anyone who has ever read this blog knows, I am obsessed with the Pediatric Cochlear Implant Circle. I have been a member for one year, probably as of today, and the group has helped me bring out the hidden cheerleader in little, old me. Little did I know that the real cheerleader - I mean DALLAS COWBOY CHEERLEADER *gasp* (any little girl destined for hotness doesn't dream of being a ballerina, she dreams of becoming a DCC) is a very active mom on the Circle, Pamela!

She just posted her blog entitled: A Real Housewife of Dallas, Texas A journey into the world of sound, preschool, real life and other hazardous daily events!

This is Pamela's entry called...

The Tab

It seems these days I've been running some kind of "tab" mentally.
I guess the tab would be called "Things Ben can do with his CI that he Otherwise Couldn't"... but since that's slightly wordy, I'll go with "The Tab".
I suppose I do this because like any rational adult, I want to keep a system of checks and balances in place that proves for us we made the right decision to have our son implanted.
Like driving along while holding a conversation with a deaf four year old who sits squarely behind me, secured in a car seat. Sign language wouldn't work. Neither of us sees the other's face or hands as we drive all over town each week to preschool, art school, speech therapy. What a lot of wasted time if we couldn't talk about the number of porta-potties we see as we pass construction sites, or how trash littering a nearby field of wildflowers is "not good" for flowers, bugs and birds. Even more profound, the times just after I pick him up from school when the glow of holding a girl's hand is still fresh. I pull out of the school parking lot as he tells me, grinning, which little girl he held hands with that day.
Just this week I sat there in awe of these amazing devices while Ben excitedly explained his day over the cell phone to his Dad.
Holy cow!! How is this happening? Ben is profoundly deaf. But what is most mind blowing here? The fact this kid is using a cell phone without additional assistive technology? That he is speaking English (we are still working on clarity)? Or is it that he's filling his dad in on a day full of things that wouldn't have happened without cochlear implants?
I say all of it! I am happily living a true life epic movie. Often tough, very challenging and yet... each day my son gives me another item for "The Tab."

When I congratulated her on her new blog and told her I was shocked to discover her true identity *grin*, this was her response:

"Ha! Sometimes it takes a little extra "Dallas Cowboy Cheerleader" pep just to get through the hard stuff... oh, and I don't mean deafness, CIs, etc... I mean a 4
year old boy! Go team. :)

Tuesday, April 22, 2008

Better Hearing and Speech Month Event- Heads Up!


One hour. One free hour to spend how I want. Miraculous. So, here I am with some INFO that is LONG overdue. I have a couple of people who have sent emails with exciting events that I have been remiss in posting and this will follow. First, I need to unwind after a long and frustrating morning that started off on a beautiful note.

*smile*

One of the most spectacular parts of my day is the morning wake-up call from Sofia Madyson aka Criminal. (note: she did go back to the supermarket to confess her crime, pay for the stolen merchandise and look like the guilty five-year old thief that she was. She received a lollipop for speaking up and looking ashamed. Jordan laughed. I looked really mean and convincing. She knows that the next stop is Police Headquarters should temptation sway her EVER again. See, now, spanking just wouldn't have served any purpose in that situation. I diverge.) Anyway, Sofia wakes up and I say, "Good Morning, Baby," (princess, beautiful girl, adorable daughter, whatever comes out of my mouth)and she always responds, "Good Morning, Mommy." I melt. Then, she jumps in my bed and we cuddle, snuggle, tickle and hug for like twenty minutes. She is the softest, roundest snuggler ever and the best part is that she still has that sleep warmth from just waking up. Then, she breathes. And kills me. She has this killer morning fish-breath that makes me gag. So, then it's straight to the bathroom for the brushing of the teeth and our morning race begins.

*relaxing*

Sunday in Grosseto was the most amazing day, sunny and warm. We spent it on the beach that was filled with impromptu sunbathers wearing only undergarments, so we joined them and I laid out in a bra and jeans, I have never... Then, as required by the heat and sun, Luca went and got two Coronas
and I swear I haven't felt such peace in a long time. Jordan went collecting seashells and Sofia was at the MIL's. Afterwards, we went to one of the beach establishments with friends for some church event featuring soul music. The guy who had a good voice started belting out some gospel tunes and even added an interesting rendition of James Taylor's "You've Got a Friend." (Live for James Taylor!) But, when he started preaching Jesus, I had to leave and go hang out on the beach staring at the sea.

Having lived in Baltimore my entire life, three hours from the closest beach, I never cease to be amazed at having the sea only twelve minutes from my house. I don't really take advantage of it as much as I'd like, but Sunday, I definitely did. Beautiful. I can say that I left the Jesus preaching because it was the second day of Passover and it just didn't seem right to me to participate in a religious event that wasn't a seder...far away from my family. Just one of those moments. I thought a lot about my grandfather while sitting there on the beach...
*Anyway*

Now for the news:

Kathy Temean, the woman who designed the cover for RALLY CAPS and our website has been working with another gentleman named Daniel Wilson. She referred me to his website and newsletter where I found the following statement:

I can not stress enough the point I made in the second newsletter about letting your little one come to fruition on their own timetable. Forcing talking or anything else will only make you frustrated which in turn your child will express right back to you. (Been there, done that) Remember, children are the unconcious projections of their parents! If your child needs help, you will know and be able to find it.

He also has a FORUM posted on his website that deals with the following issues:

* Speech Apraxia
* Autism
* Feeding Issues
* Language Acquisition
* Down Syndrome

Check it out when you have a chance...

I also received this letter (my first official contact from Cochlear Americas - she said she liked my "To Spank or Not to Spank Your Deaf Child" post, *smile*) - IMPORTANT: Heads up to all those interested-

I thought you might like to know that Cochlear Americas will be hosting its first-ever online panel discussion around the subject of hearing loss on May 1st. This event coincides with the kick-off of Better Hearing and Speech Month (BHSM) - May 2008. The month provides a great opportunity to educate and inform the general public about the importance of good hearing, the social and emotional implications of hearing loss, and the available solutions. Hearing loss affects people of all ages - from toddlers to seniors - and can greatly impact the lives of families and caregivers. Cochlear will be bringing together patients, healthcare providers, and experts in the field to share personal stories and discuss the latest developments in treating hearing loss. They'll also be available to answer your questions via live chat during the session. The panelists include:

Amy Popp, Audiologist and Clinical Educator, Cochlear Americas
Linda Day, Cochlear recipient and Awareness Manager, Cochlear Awareness Network
Brenda Batatt, Executive Director, Hearing Loss Association of America

Additionally, Emmy award nominee and actress-singer, Kassie DePaiva of “One Life to Live” whose son, J.Q. DePaiva, was born deaf but can now hear with the help of a cochlear implant, will also share her inspirational story.
Cochlear will also be announcing the results of a national survey that focuses on the social and emotional implications of advanced hearing loss. It has been administered to adults who have a relationship with someone who is profoundly deaf, as a friend, family member or colleague, as well as those who are themselves profoundly deaf. The online panel discussion on May 1st will be a unique opportunity to discuss the findings of this survey with the leading minds on hearing loss, and we would be very happy to have you attend this event.

The event logistics are as follows:

May 1st, 10:00 a.m. PT/ 12:00 p.m. ET
Registration: https://meetings.webex.com/meetings/j.php?ED=5287797&RG=1&UID=483330092
Dial-in: 866-469-3239 or 650-429-3300, closed caption will be available


MUST-ADD THIS (still rotfl):
Val said...

I popped B(4.5 yrs old) on the butt once yesterday (didn't hurt at all but broke her heart)...why? Because after weeks of displaying her middle finger to strangers down the road, her teacher, etc. and she KNOWS it's inappropriate...we've placed her in time out each time which is usually effective w/other stuff...but when I picked Gage up from school yesterday, I happen to glance in the backseat to catch her proudly holding her finger up to ALL THE TEACHERS AND KIDS at the elementary school as we drove past...front and center. I made her wait in her room for me for like five minutes before I came in...she was so "tore up" crying her eyes out, after our talk I barely popped her butt and she remained in her room sobbing for like five minutes. Then it was over! Let's hope it works! Even Gage was very upset w/her...go figure!
AND...

CHRISTIAN'S HOME AND ALL WENT WELL...CHECK IT OUT!

Monday, April 21, 2008

To Spank or Not to Spank your Deaf Child?


(Note: Interesting what you find when googling photos for spanking) I have no time to blog, this post will be short and to the point. To Spank your disobedient child or not to Spank your disobedient child? And by spank, I do not mean a "spank" given by an angry out of control parent, I mean a "spank" consciously given to teach a child right from wrong. When Jordan was about 6, after having exercised every other type of "punishment" imaginable including positive reinforcement strategies, time-out, etc. the spanks started coming...and they worked. What do you think?? The American mentality is very different from the Italian mentality in this area as American parents may fear Social Services intervening at the drop of a well-planted smack on the arse! Just curious...Hugs from Italy...very freaking busy!

Adding...
Live on the Blog with siblings, Mavi (12) and Federico (13 1/2):
Question: What do you think about "Spanking" children?

Mavi: My parents rarely spanked me when I was younger, and I think it helped me learn the lesson at the time. However, it isn't the most important tool in helping children "learn the lesson," it is more important to talk to the child.

Federico: My parents always spanked me when I was younger, and I still get slapped on occasion when I open a big mouth! (lol-me) Spanking is very useful because you learn how to obey your parents. At first, spanking may seem like a terrible punishment, but as you grow up, you can understand the value of a quality smack on the butt.

Question: Will you "spank" your children?

Mavi: Yes, if it's the only way to help my child understand right from wrong.

Federico: Yes, and then, I will tell them about the moments I was spanked by my parents.


PS. "Bubbly" is dedicated to little Christian who's going in for ci surgery today at Hopkins...kisses to Christina and Chuck!!!

Friday, April 18, 2008

RALLY CAPS LATEST and TAGGED!

To Deactivate blog music, click on stop button on righthand side: Enjoy!

Did you guys really feel us all the way in Chicago??? Just kidding, not. *smile* Today, I'm feeling flirty...it's been awhile, but Paotie woke me up with a delicious blog that started my day off with a "Bang!"
I have news. On April 16th, Cochlear Italy (pre-)purchased 416 (there's that number again) copies of the Italian version of RALLY CAPS to distribute to hospitals throughout Italy. The Grosseto Medical Association Board just gave us sponsorization in addition to the Mayor, Province and National Healthcare Branch of Grosseto, things are shaping up for a rockin' book presentation that will most likely be at the end of May, just in time to conclude "Better Speech and Hearing Month." (Anyone know if that is an international thing?) I'm considering writing to request the presence of the Italian Prime Minister,himself. *smile* (actually, rotfl)

Just to keep an American Mamma's feet firmly on the Tuscan soil, I discovered that my 5 year old is a criminal. Two days ago we went to the supermarket and she asked me if she could have a chocolate egg, of course, I said yes. She then requested one for her brother so she could surprise him. Now, some of you might be saying, "Awww, isn't she the most thoughtful sister??" Hold onto your pants. I said, "Of course, Sofia, you are such a spectacular sister." Then...she requested her second egg. "Mommy, (she knows I love it when she calls me "Mommy") can I have two eggs?"
Response: "Absolutely not, be happy with one...my adorable child. (witch)" She hemmed and hawed and "got over it." I paid. We left. We walked home. She ran upstairs as soon as she walked in the door, in quite the suspicious manner.

I asked (Mamma radar in effect), "Sofia, did you take anything from the Supermarket?" And my sweet, innocent child replied, "No, Mommy, I just wanted to put my coat upstairs." Hmmm. To believe or not to believe???? I believed. God, am I dumb as shit!

The next day, Sofia confessed. She had stolen a chocolate egg and worse yet, she ate both of them. I am so gullible. Needless to say, tomorrow we will be returning to the supermarket where she will pay for that chocolate egg and confess. When I posted this on the Circle, one of the mom's told me her daughter had done something similar and she took her straight to the Police Station...not a bad idea, actually something I would be quite capable of doing. Unfreakingbelievable.

Wanna hear something else that I find unreal?? School field trips. Yes, today I had my middle school/high school group. You need to understand that students don't go to the zoo or a museum when they go on classtrips, they go away, away, away. One of my kids, who will remain nameless because somehow this blog pops up at inconvenient times and in surprising places, went to Pompei, Sorrento and The Amalfi Coast this past week. They were a group of about 50 and only broke one sink, curtains, bed boxsprings, shower doors and a window. (Another student who went to Monaco, Cannes, the French Riviera broke a framed painting and shoved it under the mattress to hide it, another group broke a door)He then proceeded to explain how there were bunkbeds in every room, so the guys carried one set of bunkbeds into another room, leaving that room empty.

What's a creative group of high school testosterone charged guys to do, they hooked up an ipod to a set of speakers, grabbed a flashlight, shut off the lights and had an instant DISCOOOOOOOOOO! My student said that every night after visiting really cool places, they partied. There were students drinking, smoking and hooooookin' up. He's 15. When his mom asks him if he learned anything on the fieldtrip, what do you think he'll say?? Jordan is not allowed to go on fieldtrips...EVER!

Okay, it took me a while, but here it is:

Tagged---A little blog game....

I have been tagged! :)
Christina of *LIVE*LAUGH*LOVE* Tagged Me! Here's the lowdown:

1. The rules of the game get posted at the beginning.
2. Each player answers the questions about themselves.
3. At the end of the post, the player tags 5 people and posts their name, then goes to their blogs and leaves them a comment, letting them know they've been tagged and asking them to read your blog.

I have to answer questions and people I tag have to answer the same questions, so here I go.

What was I doing 10 years ago:
I had been living in Italy for ten months, Jordan had had hearing aids for eight months. We were struggling to learn Italian. I was walking to the local park every day pushing Jordan in his stroller repeating expressions in Italian over and over again. I was cussing out every single Italian who didn't smile at my cute boy with the hearing aids or smile at me as we walked by. I was also playing softball as stress-relief for a series B team - we played in Florence, Arezzo, Rome, etc. so I got to do a little traveling. I was famous for always bringing the toilet paper roll. One thing I've learned living in Italy, is ALWAYS carry a pack of kleenex or a roll of toilet paper.

Five Snacks I enjoy:
In a perfect, non weight-gaining world
1. Friendly's Reeses Peanut-Butter Cup sundaes with butter pecan ice-cream (just can't get this in Italy)
2. Nutella on my finger, bananas, strawberries
3. Any pastry with glasz from Giannini (the BEST bakery in Grosseto)
3. Oreos
4. Lindt RED chocolate balls
5. My mother-in-law's tira mi su (you have NEVER in your life!)

In the real world:
1. Latte Maremma Yogurt drink Flavor: Orange, Carrot, and something that starts with an E in Italian that's not coming to me.
2. Bananas
3. special K bars
4. 3 oreos instead of 6
5. espresso with skim milk and sweet and low instead of whole milk and sugar

Things I would do if I were a billionaire:
1. Develop and fund Newborn Hearing Screening for Italy, starting with Grosseto.
2. Donate cochlear implants to families in need.
3. Develop and fund a strong support network throughout Italy for families with children with disabilities. There is so much that needs to be done in this country in the way of psychological support for people with Cancer, disability, everything.


Five jobs that I have had:
1. All-time favorite- Subsitute Spanish Teacher for the class that NO ONE wanted at Randallstown High School (They exploded a smoke bomb in my classroom AND brought in a SNAKE!!!)
2. Coach for JV basketball and softball
3. Fifth Grade Teacher
4. Phys. Ed. Teacher
5. Cocktail Waitress extraordinaire (Uniform: Backless tuxedo shirt, bow-tie, short, black mini and black heels. OMG- did I really do that? Yeah. I made 150 bucks in four hours of serving cold beers to drunk businessman. The perfect college job, fast food is so overrated.)


Three of my habits:
1. Shopping at Intimissima and Tezenis - my new favorite color is fuschia - it's Springy!
2. Blogging
3. Sparkly Lip gloss (just like Christina and Abbie! Sofia steals that, too)

Five places I have lived:
1. Where did the Brady Bunch live?
2. Beverly Hills 90210
3. Fraternity Row numbah 11
4. Melrose Place
5. Istia d'Ombrone

Add one new part:

One thing you FEAR and would never try: One of the things that REALLY attracted me to my husband was that he was a paratrooper during his obligatory military year - I would NEVER jump out of an airplane even if I were 100% certain the parachute would open.
One thing you FEAR and would try: Driving a motorcycle, terrifies me, but I would consider trying it.


Nine People I Want to Get to Know Better:
http://blog.deafread.com/mishkazena/
http://www.paotie.com/
http://pajka.blogspot.com/
http://www.hearingexchange.com/blogs/
http://berkeoutspoken.blogspot.com/
http://www.deaf-culture-online.com/Deaf-culture-blog.html
http://deaffilmblog.blogspot.com/
http://cochbla.blogspot.com/
http://crismazzullo.blogspot.com/

Thursday, April 17, 2008

CI Kids Observations Part II


mishkazena said...
What that man shared is more realistic. Not all deaf kids with cochlear implants have the same opportunities as Rachel and other kids, including yours. The C.I. is only a tool and it can be used to maximize the potential of the child's ability to hear and speak or be underutilized. There are many factors that determine the outcome of each child's c.i. usage.

However, I disagree with his assessment that Rachel is a cochlear implant failure. Though she may have some problems with the pronunciation of a letter due to her late cochlear implantation, her speech is fairly comprehensible, from what I was told. Most importantly she can understand pretty much what she hears.


Dianrez said...
In my observations, these comments are closer to the truth than are claimed in some other CI blogs.

In all, the CI is only one tool, and an incomplete one at that. It may be the best one for aided hearing that we have. Its limitations need to be recognized and all possible tools employed, especially ASL, for each individual child.

This is not to say that ASL is a better tool. The problem is that it is severely underrated as an effective tool, especially by parents and AVT professionals.


Anonymous said...
What this man has commented is very true as I work at a deaf contained classroom and I am seeing the same things that he so clearly described.

Many of these parents aren't willing to take the time to work with their deaf child, they don't even try to learn how to communicate with them at home and then when these children come to school, they are so hungry and desperate for human communication. I'm sure it is a torture for them to stay home during school breaks as they are frequently isolated from their deaf peers. Their parents do not even make any efforts for them to meet up with their deaf peers after school.

This man's comment is very much in reality with a lot of these deaf children these days.

I appreciate you listening and sharing this man's comment with all of us.


KP
I'm sorry. I'm sick physically and I just get tired of the same old rhetoric from the deaf community that all CI children are failures because they are not using ASL. I doubt that my son would do very well with ASL since I DON'T KNOW ASL. (Not yelling). I would be learning with him so we would be at baby level right now. He has come much farther with his speech than signs. Not to say that one day we aren't going to go down that avenue, but right now it is not the mode of communication we are going with.

Please, please, please stop telling parents of kids with CI's that they are failures when some of us can plainly "hear" that they are not.

As for Rachael being a failure, she is an inspiration. Tell me how many other kids her age can travel the world alone, hearing or not? How many deaf kids who only use sign would be able to do that?

I get so sick of someone who doesn't know me or my situation telling me how I'm ruining everyone's life.

KP

Jodi, I'm sorry but I just get riled up with a few of the deaf and their constant degrading. They have nothing nice to say and wouldn't admit anything positive if it was smiling right in their face. They would find another flaw. People who always look for the negative usually find it.


Commentary (ala Mishka:)):
The gentleman who provided his assessment based on his experience with CI kids and the commenters have all made important observations.

One thing that has always bothered me about the yahoo support groups and deafread.com (talking about blogs, not vlogs, because I do not understand the vlogs, so I don't watch them) is that they seem relatively demographically, ethnically uniform...and perhaps I am making an assumption here, but one can roughly understand a person's sensitivity level and intelligence by means of their writing skills. What I am trying to say is whether or not a person uses grammar correctly or not, the message conveyed is what matters - that message is a reflection of a person's sensitivity and intelligence.

Sometimes, we can identify race, ethnicity and gender merely by reading a name. Based on this, there is an entire portion of the population MISSING from the support groups and deafread.com, and it is no doubt this portion of the population that needs the most support to enable CI Kids to reach the greatest potential offered by a cochlear implant.

When approaching the issue from this perspective, given the image of a lost parent ("lost" for motives of weak character, financial situation, non-native speaker, broken family, ignorance, or misleading information) who was not provided with accurate information regarding what a cochlear implant actually involves, I begin to understand the perception that such a parent chose the cochlear implant to "fix his/her kid." These parents wrongly assume that sticking the processor on the ear is a "magic cure" of deafness. (Note: I find this strange because the ci companies all say that the CI is not a cure, but I will work with this hypothesis)And so, these children are lost, suffering from inadequate communication skills.

My own experience, together with those of the dedicated mothers and fathers on the support groups led me to IMMEDIATELY reject the word "fix."

KP wrote, "People who always look for the negative usually find it."

I am a person who ALWAYS looks for the "Positive," and I NEVER fail to find it. I am a little too naive. Perhaps, sometimes, it is important to look for the positive, but not at the expense of being so blind as to not see the negative. Only when we acknowledge the negative can true change occur.

In regard to Auditory Verbal Therapy, see Val's Blog..."Are We Well-Rounded?" couldn't have said it better myself!

*And...FYI*
This is what a typical parent on the support groups sounds like, just to give you an idea of where I'm coming from:

Tiffani said...
Jodi, I just had to comment, sorry it's so long.

AVT is not a waste, and I'm offended by that comment. It has helped my daughter hear and speak, without us sitting here 8 hours a day doing therapy. (When would I work? When would she go to school?) She has just one structured hour a week with a private therapist (paid for by our public school system, which has done a terrific job with accommodations); the rest of the time is life therapy. We talk about water, sun, laundry, the birds building a nest on our porch, seasons, animals, cars, dirt, food, cooking, whatever, as we go about our day.

My daughter plays soccer and softball, plants flowers, plays with Barbies, sings, dances, cries, gets mad, swims, converses with friends, fishes, has a great imagination, pitches fits, loves church, reads "Dick and Jane" books, and lives a full life.

No one told us a CI was a "magic fix," and no one told us it would work perfectly. We were told about the hard work it would take. A "poster child" was never held up to us as a goal; our goal has always been to help our daughter reach HER potential.

Thanks.



Thank you again to the gentleman who sent the observations, and to those who took the time to comment on what he had to say. *smile* Jodi

Wednesday, April 16, 2008

Observations of CI Kids...And 8 mo.-old CI Activation


Occasionally, people prefer to comment by sending me private emails and one gentleman has sent me quite a few. He has provided me with an interesting perspective on various topics and for that I am grateful. I wished to share this latest email, which he gave me permission to post. I would like to read your comments before I comment. Are these observations biased or unbiased? Issues that he addresses include demographics, parental interaction, communication methods and English proficiency in the home. One hot topic as recently discussed on Val's blog is viewing the child as a complete, well-rounded child and identifying strengths and learning styles. As a teacher and Mamma, I dig that!

Observations of CI Kids

I have volunteered in several school and instructional settings over the past ten years or so. I have had opportunities to observe and visit with about 25 children with CI’s.
Ages range from pre-K to high school.
Families were both two-parent and single-parent. The number of single-parent families seems a little higher than the US average. It has been a longstanding observation that the stress of having a deaf child (for Hearing parents) tends to split marriages. As with public school students generally, a few families seem to be effectively no-parent, with the child showing evidence of a lack of adult interaction on an ongoing basis. (I can explain this in more detail later if you wish.)

Economic status varies widely. One or two are upper-income physician’s children. Most are middle-income to lower middle-income. Several are lower-income. As might be expected from our location (Texas), a sizeable minority are immigrant families that do not speak English in the home.

About half the families have at least one parent willing to learn Sign, including several of the immigrant families that do not yet have mastery of English. (Does that sound familiar?)

The kids overall do not match the poster child picture that many paint for CI kids. One child I met while volunteering in an ASL (for foreign language credit) class. He signed English and was very frustrated with the grammar and syntax of ASL. I never observed him to speak. When I asked his teachers and a few classmates, none of them had ever observed him to speak. I had known this teen for four years before I learned that he had a CI that he never used.

Most of the kids signed and spoke as the situation merited. They tended to use signed English since their teachers who signed used signed English. These kids seemed to speak well and be understood, although I did not have the opportunity to observe them with people who are not familiar with “Deaf speech”. Familiarity with Deaf speech makes a big difference in whether you are understood.

Social interactions seem to depend more on how outgoing the child is than whether or not the child has a CI. Very introverted kids do not socialize as much, CI or no.
In general, the CI kids seem to have language delays. Parents generally seem to have the idea that CI is a “magic fix” for their child (more on that later). To use a computer analogy, CI’s are narrow-band. There is no way a 24-channel or even a 100-channel CI can carry as much information as ‘normal’ hearing or vision. Even with a CI, teaching language to a deaf child without using visual language resources puts the child ‘way behind their hearing peers. Visual language can close that gap and bridge to English competence.

As far as “success” with CI, that really depends on definitions. The parents I have visited with either did not listen to or remember the informed consent information or proper informed consent was not given. These parents seem to expect their implanted child to hear as their hearing peers and speak as their hearing peers. By these standards, Rachel from Cochlearimplantonline is a CI “failure”. I asked hearing friends about her speech from her videos, and they all say Rachel “talks funny”. That is why I generally view CI’s as being “oversold”. There is an old saying “If your only tool is a hammer, every problem looks like a nail.” I see this operating in many areas in medicine, especially when dealing with deaf children.

In subsequent emails, he added...

BTW, in view of some other blog postings, another thought surfaces. For many, but not all, of the CI kids I have met and observed, the CI is like a narrowband connection, like a dial-up modem, compared to either "normal" hearing or visual language as a DSL or cable broadband. These kids do not get language exposure fast enough through their CI alone to avoid language delays. These kids need visual language to avoid the language delays. In signing families and in truly bilingual school settings (not just in name only), these kids are at parity or above compared to hearing peers. (I think that is what one blogger has referred to, though I am not completely sure.) That is also another reason that for these kids, AVT alone is a waste of time - not that it has no value, but that it is not sufficient and so burns valuable time.

As for AVT, I view AVT as both trivial and a waste of time. It is trivial because many parents already know that they cannot trust the public schools to do a complete job of educating their children. Parents must take a lot of time to teach their kids. AVT is a waste of time because it devours time needed for other aspects of education. With our children, I read to them a lot, not only children's books, but also C. S. Lewis, Tolkein, Melville, Shakespeare when they were pre-school. We also taught them about art. We do not have the resources you have in Italy, but we have several museums in a 4 to 5 hour drive that get world-class traveling exhibits. We taught them science, and history. We taught them how to shoot a bow and a pistol, how to safely use and sharpen knives, hatchets, and axes, and we taught them about plants, trees, and animals. Public schools generally do not cover these things in very much (or any) detail.

In the meantime, here is an Activation Video of an 8 month old...Jonathan! *OMG*

Tuesday, April 15, 2008

More on Lance Allred- NBA (This Guy is AMAZING!)


"Borrowed" once again from Josh Swiller who wrote, "About the first deaf player in the NBA. Smart as a whip, yet his old coach had him tested for learning disabilities. Sound familiar to anyone?"

Cavalier Lance Allred never plays. But what other rookie grew up in a cult and is writing a Jane Austen satire?
By Caleb Hannan
Published: March 26, 2008


Walter Novak
Wally Szczerbiak might play more, but Lance Allred has three books in the works.
Subject(s): Cavaliers, the sporting life The game is over. With 18 seconds left, the Cavaliers are down 12 to the Orlando Magic, and have officially entered Garbage Time. Finally ready to accept defeat, Coach Mike Brown motions toward the end of the bench, where 6-11 rookie Lance Allred slips off his warm-ups for the first time in several hours. By the time he launches his first career shot — a jumper that barely grazes the rim — much of the crowd has already filed out.

Just six days ago, Allred was the starting center for the Idaho Stampede of the NBA Development League, basketball's version of the minors. But on March 12, the Stampede were in Salt Lake City, Allred's hometown, for a game against the Utah Flash. As he drove to his parent's house for pre-game dinner, he got a call from his coach, who told him he'd been offered a 10-day contract with the Cavs. Allred turned around and drove back to the arena, where the Stampede's owner asked him to pay back his per diem — the $30 in spending cash D-Leaguers are given each day of a road trip. Allred pulled $60 from his wallet and went on his way.

On the Stampede, Allred was a captain, the leading rebounder, and an All-Star. Now he's an insurance policy — a warm body to fill out the roster and occasionally take the floor to protect the team's regulars from injury. The lack of playing time has its upside: the $25,000 he made during his first 10 days was more than double what he made last year with the Stampede. It's a lifestyle change made obvious during his first night on the team plane, when he watched a teammate lose thousands in a card game.

"They asked me if I wanted to play," says Allred, sitting in the team lounge before a recent game. "I told them that's more than I make in a year."

But more than his portfolio separates Allred from his new teammates.

A devout Mormon, Allred grew up on a polygamous compound in Montana. His family moved to Salt Lake when he was seven, and broke away from the extremist sect six years later. The transition was especially hard on Allred, who was born with a severe hearing impairment. Although his hearing had improved thank to aids, lip reading, and years of speech therapy, he still heard only 75 percent of what other kids could.
Self-conscious about his speech, Allred found outlets in reading and writing, and reveled in listening to stories told by his dad, a high-school history teacher. It wasn't until 8th grade, after a six-inch growth spurt, that someone suggested he take up basketball.
"Oh, he was terrible." says his mom, Tana. "And we have the video to prove it."

But his skill quickly caught up with his size. As a high-school senior, Allred won Utah's player of the year award. His college decision was easy: His hometown University of Utah Utes were recent runners up in the national title game, and Utes coach Rick Majerus had a reputation for turning his players into NBA draft picks.

But even in the autocratic realm of college coaching, Majerus was a notorious bully, and during Allred's two years at Utah, he was a frequent target. In 2004, he told a Salt Lake newspaper that Majerus had called him a "disgrace to cripples," a claim backed up by two of Allred's ex-teammates. And one day, as punishment for some now-forgotten offense, Majerus ordered Allred to be tested for a learning disability.
Allred was anything but disabled. He'd aced the ACTs. After 10 minutes of questions on the special-needs test, the woman testing him asked what he was doing there. "So I told her," he says. "'My coach wants to humiliate me even though I have the highest GPA on the team.'"

After two years at Utah, Allred transferred to nearby Weber State, where he earned All Big-Sky conference honors and graduated with a double-major in English and history. Undrafted, he started his pro career overseas.

"For a lot of players going overseas can be intimidating," says Allred. "But for me, a European history major, it wasn't."

But the promises offered by the European clubs proved empty. In Turkey, he signed a contract for $100,000, he says, but was never paid. When he threatened to sit out until his contract was honored, his owner responded by sending a taxi driver to his hotel to take him to the airport. After a short stint with two French teams and one in Spain — where he says his team refused to pay for knee surgery — he flew back to Utah, paid for the operation, and found himself $30,000 in debt.

"I was about to quit," he says, "thinking maybe this isn't what I'm supposed to be doing and maybe I'll just go be a high-school history teacher like my dad." Instead, in 2006, the Stampede's coach convinced Allred to sign with Idaho. He started as the fourth-string big man. Then, in the span of a week, everything changed. The team's starting center broke his leg, the back-up was called up to the NBA, and the third-stringer — the final man standing in Allred's path to the starting job — signed a contract to play for the same Turkish club that stiffed Allred. In the D-League, Allred has learned, opportunity always comes at someone else's fortune or expense.

"It's a domino effect," he says. "For good or bad."

Allred turned the opportunity into a year-and-a-half of solid production and an NBA contract — the first ever for a deaf player. And on Tuesday, with Ben Wallace's back ailing and Daniel Gibson still sidelined, the Cavs re-signed him for another 10 days.

As temp-work goes, it's a dream gig. On top of the $25,000 per 10-day deal, Allred's road-trip per diem jumped from $30 a day to $106. In Boise, each Stampeder was given one pair of sweats for the entire season. At the Cavs $25 million training facility, Allred was encouraged to take what he wanted. He froze and stood in the equipment room for 10 minutes, he says, before taking a step toward the swag.

"I walked over to pick up a shirt and looked over my shoulder," he says. "It felt like stealing."

Between practices and games, Allred still escapes by reading and writing, in ways perhaps no other NBA player does. Around the locker room, he carries an Oxford professor's book on the Crusades, research for a historical novel he's writing about the 14th Century Battle of the Golden Spurs, between the Flemish and the invading French. He's also at work on a memoir and a "Victorian satire," inspired by his distaste for Jane Austen's Pride and Prejudice. "I'm a Dickens man," he says.

*hot*

And when asked for a historical figure whose situation is analogous — undrafted D-Leaguer to hopeful NBA bench-warmer — Allred reaches back to 11th Century England, when William the Conquerer sailed across the English Channel to fight off would-be successors and claim his throne. And although it's not exactly a throne he's after, and his goals extend far beyond basketball, Allred knows exactly where he stands on his journey.

"I'm crossing the Channel," he says.

Monday, April 14, 2008

FAITH


I wasn't planning on posting today, however, I started reading my regular blogs and once again, Christina's really touched me. Her post reminded me of something that happened to me during the hearing aid years. First, read her post:

Love Letter

I spent much of this morning trying to focus on my work, while Christian played with our sweet sitter Arina. It was a bit chaotic, as our new cleaning lady was here as well. Despite the craziness, it helped having alot going on in the house while I waited. And waited.

Then, at 12:30pm, I got an email from our audiologist. The email started explaining how they wanted to do one more audiogram on Christian, because the last one that we had at Hopkins showed worse responses than what we got from our private audiologists. She then explained a bit more about what they wanted us to do about high frequency access for him.

Then it said "And you can expect an early summer surgery date".

Whoa. Did that just happen?

After calling my husband, frantically trying to reach my Mom, emailing another Mommy of a CI kiddo, emailing my EI team, and talking out the email over Gmail chat with one of my best girlfriends, I decided I needed to write our Hopkins audiologist back. I asked her to clarify a couple of things. I asked her to confirm that they did indeed, see Christian as a candidate in his right ear. (By the way, this all happened in like 10 minutes).

She wrote me back.

THEY DO SEE HIM AS A CANDIDATE. We'll probably have a surgery date after this next audiogram.

So, after a little bit of crying, a little bit shock, and a little bit more anxiety, I sat down and let it all sink in.

During all of this, being the multitasker that I am, I was opening mail. I received a letter from the Archdiocese, and when I opened it, one single ticket to the Holy Father's mass fell out. It was a complete surprise. While I have been eagerly anticipating Pope Benedict XVI's visit here to DC, I wasn't able to secure tickets to the Mass.

A chill immediately fell over me, and tears ran down my face. I knew that there was a reason that I received the news about Christian at the same time that I received the letter with the Papal Mass ticket. I truly believe that this was God's way of telling me "I've been listening to you. I hear your prayers. I will take care of you and your family. And I will give you an answer". This was a very treasured, very beautiful, love letter from God.


Christina has a great deal of FAITH. Nowadays, FAITH is just not an easy thing to grasp. With all of the violence, hatred, disease and devastation in the world, many people have difficulty accepting that there is a God watching over us.

I believe in God and Angels...maybe too much. Perhaps when we are in the greatest moments of indecision, difficulty or change we are more susceptible to signs, bizarre dreams and "love letters." Some people accept these signs, while others reject them, I believe all of that depends on your FAITH.

When Jordan was diagnosed, I never prayed to God to ask that he be "healed" or "fixed." I prayed every single night for the strength to be a good mother, really, every single night. I never once questioned the fact that he was born deaf, I believed that he was given to me for a reason. I have been truly blessed. Maybe my FAITH led to this bizarre experience...

I was in that kind of haze where you wake up too early in the morning and fall back asleep, a light sleep. I had a dream that a white dove flew down, held my hand and pulled me up to this bright light. I entered the light and felt this unbelievable peace throughout my body, peace and complete happiness. My body floated back down to the ground and I woke up. Some people talk about near-death experiences, going into the light and feeling the same sensations. I have never felt such a sensation of peace and tranquility as I did after that dream. I honestly felt like I was being given a gift and a sign that we were doing the right thing with Jordan. For one brief moment during that traumatic period, I could see that Jordan would be okay. And, I felt blessed.

There has been a thread on the Pediatric Cochlear Implant Circle that touched me just like Rachel's Blog "My Mom Sat on Me" affected me. Every single mom goes through difficult periods trying to raise a deaf child, especially when that child is intelligent, willful and stubborn as hell. I have done things that are not pretty, including on sitting on my child to make him take a vaccine and wear his cochlear implant processor...more than once. Jordan has been compared to other deaf kids and found lacking, which directly translated into the fact that I was lacking as a mother. Our speech therapists constantly told me to work more, do more, spend more time at home doing lessons, etc. So, what do you do when you're ready to pull your hair out and plain old give up? You pray and have FAITH. And...having FAITH means finding the strength in yourself to make the tough decisions and fight the neverending battles.

Sunday, April 13, 2008

Devastating Text Message for Jordan


Okay. A while back, the day after Valentine's Day, I spoke about Martina, (Marty)Jordan's adorable friend who sits next to him in school. He gave her and the dream of his life, Sara, the "Innamorato" (In Love) t-shirt as a gift. Well, while we were in Baltimore we received two text messages from Martina:

1. Hi Jordan, is everything okay? See you tomorrow night (she was confused)your friend, Marty. Say Hi to your mom and Dad. (She's dying for me to be her mother-in-law lol.)
2. Hi Jordan. When are you coming back?? We miss you a lot, a lot. Your friend, Marty.
And then, the day we returned, she dropped the bomb...

*wiping streaming tears*

Hi Jordan! Unfortunately, the teachers changed our seats! I'm so sorry and sad because I was really happy sitting next to you. Anyway, they put Elvira next to you and she is really smart. You are a really, really good friend and I will always be there for you any time you need me. Friends Forever, Marty.

Have you ever???

Jordan had a birthday party yesterday and Martina's mother came up to me to tell me Martina came home in tears the day they changed her seat.

God, I love that girl.

Devastated Mamma

Saturday, April 12, 2008

Sibling Rivalry on Deafread.com *smile*


My kids have been driving me crazy today and just hearing them bicker back and forth brought the comments left on the Blog Comments Reveal Misconceptions with Regard to Cochlear Implants post to mind. Just like my kids are siblings, deaf individuals are siblings. The bond between my kids created by living their tragic lives as MY kids *smile* is what defines their connection as "siblings," just as Deafness creates a common bond between a child like my son with a ci and an individual without a hearing aid or ci who uses ASL. That doesn't mean that there is always harmony in the household, actually there is always war. (at least in my crazy house)But, there are shared experiences that make that bond unbreakable.
...Why didn't you also focus on how the description of the plot pointing out that getting a CI means leading a normal life? Oh so we all Deafies without CIs are not normal?
...It is frustrating to see comments where someone says the CI doesn't work. They know someone that it didn't work for, so of course, it is totally bad and totally ineffective. Absolutely NOT TRUE. If it doesn't work for someone. Then it doesn't work for that person.
...Indeed, there is a lot of misconception about the cochlear implants by some Deaf people. On the other hand, many misconceptions about ASL and Deaf Community held by the parents of c.i. kids are also exhibited.
...Remember the device is just like a car that can run good for 10 to 20 years, yeah right! Will we get some results?? I think NOT.
You think some CI people can be successfully..SURE. I am proud of them. Deaf people without CI CAN be successfully, too!
...But it is not fair to mislead new parents against implants any more than it is fair to mislead them in favor of the implants.
...Most, from what I've seen so far, do not consider their child "normal hearing"..most do acknowledge that their child is deaf, still. It's their choice. It's your choice to not have your child(ren) implanted.
...I encountered many other deaf people who would immediately give me a "dirty" look once they find out I could hear and speak for myself. I don't let that bother me and if they don't like it it's their problem...not mine. I happen to have the best of both world and my world is the deaf community.
...Deaf children should make that choice because it is his/her body and it is his/her right. All Deaf children's cochlear implance option is here to stay. ASL is here to stay.
...That is probably the biggest myth that needs to be addressed. If the child has a progressive loss, there are other options for verbal language acquisition. However, if the child has a profound loss, the way the brain learns, if you wait until they are old enough to decide, the brain is already past the point where it can make sense of the sound. One way or the other, it is the parents who decide, even if they don't want to. By waiting, they are deciding not to have a successful implantation.
...The truth is that Many deaf people accept that a deaf person who can speak and hear well and this person has respect for ASL and the Deaf community.
...Jodi and Tale of CI: Did you realize your blogs really do advocate my belief of not supporting of CI?
*Nothing like a little brotherly love in the household*

Friday, April 11, 2008

Ellie's Story...Bilateral Cochlear Implants

Ellie's mom posted this activation video on the Pediatric Ci Circle and I asked her for permission to share it with all of you. She generously granted permission to share her story so that others could learn a little bit more about the diverse journeys we all experience. My favorite part is when she hears her own voice, and she is at an age where she is able to collaborate with the audiologist, making the mapping experience a lot easier - she is ADORABLE!!! I sincerely apologize that I have been unable to add captions, I haven't had time, nor have I really looked into how to do it on Abbie's blog, but I will do that...still recovering from jetlag. Take it easy on the comments or I'll be forced to moderate - don't want to do that...there is a beautiful child involved.



Ellie's story...(Ellie's Mom sent me this to share with anyone reading)

Ellie was born 13 weeks early at a mere 2 lbs 1 oz (955 grams). Her first month of life was a hair-raising roller coaster ride - doing great one day and on the brink of death the next. She was too small to test her hearing until she was close to 3 months old. When they finally did it the results were inconclusive because she was moving constantly throughout. They thought she might have a mild/moderate hearing loss. We scheduled an ABR for as soon as we could after she got home - that was 5 months later. So at 8 months of age we were finally able to confirm that she did have a hearing loss that was on the mild side of moderate. She was fitted with hearing aids and so began a new part of Ellie's journey.

We didn't know what would be the best way for Ellie to communicate so we started out doing a TC approach. I had already planned to teach at least a few signs to help communicate basic needs before she was able to speak. I had friends who had done this with their (hearing) children and found it very helpful. When Ellie had learned about 5 signs, she suddenly seemed to make a connection with speech. After that, I couldn't get her to do any more signs. Then we pursued speech therapy and got her into a good program where she could learn to talk well.


We never really knew what the cause of her hearing loss was. She had been too tiny at the beginning to do an MRI or anything. Everyone guessed that it had been caused by a brain haemorrhage she'd had when she was 2 weeks old. Last summer, she experienced a drop in her hearing of about 15 Db. It wasn't until November that we were able to get an MRI scheduled and finally learned that her hearing loss was caused by LVAS and was a progressive loss that would (over time) almost certainly result in profound deafness. We were told to avoid head trauma as this could cause another drop in hearing.

Two weeks later on a Saturday evening, Ellie lost her balance while she was running down the hall and hit her head on the wall. This kind of thing had happened many, many times before. She's 4 yrs old. This time, however, she lost 40 Db. She suddenly jumped from the moderate/severe category right into profound. On the way to the doctor on Monday morning Ellie told me that "the doctor needs to give me a cochlear implant like Shelby." She was disappointed that he did not do this on that first day. She continued to tell us this as we waited through the steroid treatment and for our next doctor's appt.

It was so hard to wait.

When we went to the doctor again at the end of December, she told us "the doctor needs to give me a cochlear implant so my hearing aid will not be broken and I will not feel crazy anymore." It broke my heart. She had terrible anxiety. Everyday she told me that her tummy hurt - 10-20 times a day. We got through the waiting period by talking about it with her everyday. We had to "wait our turn." When she would tell us with a sad face that "I cannot hear very well." We would acknowledge it and then tell her that we loved her just the way she was even when she could not hear.

Somehow, we made it through.


You can see her joy at being able to hear on this video. It has only increased with time. Her stress level has dropped. It's not quite gone yet. She still feels a little stressed when what she hears doesn't make sense. But it's been 4-5 days since she has said that her tummy hurt. She is engaging in play again with her cousins. Her laughter has returned. Her happy, outgoing, confident personality has returned.

*I have never seen such an obvious reaction to sound as Ellie's behavior in the car...really amazing video*

Thursday, April 10, 2008

Blog Comments Reveal Misconceptions with Regard to Cochlear Implants


In a blog entitled, Jeff Daniels And Marlee Matlin Star In Sweet Nothing In My Ear, and 203 comments later, the misconceptions and prejudices regarding the cochlear implant reign. A mother-member of the Pediatric Cochlear Implant Circle brought the blog to the attention of our international community cochlear implant support group - see Naomi's reaction below some of the comments I have posted. I have chosen to copy comments representing such misconceptions regarding cis and the role of hearing parents in choosing implantation. Not all comments were derogatory, actually there were many open-minded responses, especially in regard to the film promoting awareness of choices in deafness. However, the angry, unsupported comments regarding cis were what specifically touched our support group.

As many already know, the movie's plot is as follows:
Laura and Dan Miller (Matlin, Daniels) have been happily married, as well as best friends, for many years, but their relationship begins to change when their only son, Adam (Noah Valencia), loses his hearing at the age of four. Laura, who is deaf herself, sees this occurrence as a minor problem, something that she has dealt with her whole life. Dan, on the other hand, at first agrees with her but starts to realize that, with surgery, his son could regain his hearing and live a more normal life.

Tempers flare and frustrations mount as Dan investigates the surgery and its pros and cons. Laura is dead set against it and makes that very clear, even as Dan begins to favor the procedure for his child. Locked in their own worlds, the couple must find a way to mend their differences and make the best decision for Adam's future.




wluvtojlc said:
CI seems a big word these days.. Especiallly for DRs who really believe they know what they re doing which is a big myth here.. Telling hearing parents of deaf kids that they wld benefit CI is a big lie. They know parents like what they want to hear. Hearing parents of deaf children is to do some research and not from words of a DR. AGB org. is no better today than what they first started.. in fact I think they are going backwards. For ur information I have known this from talking to kids who have had CI day they don't really hear much, not comfortable with it , they have gotten hurt when a ball hits that area where CI was put in and gotten migraine headaches after that. The child s head grows as he/she develops as they grow and usually their scalp feels some tightness, some nerves become switching feeling
switching..Parents please get information from other deaf people who have CI before deciding on ur child. Thanks Hallmaark for bringing this media to the world to know.. and be aware


Louisvillian said:
Am truly sorry about cochlear implants. I can not accept it because they would have a major peoblem and remove from this....Not worth !!! Warning !!! Doctors get an advantage of your money.God have a reason for any hearing problem, blind, or any general health probleml. When you are saviors at first, you will be happy to hear in a heaven. Joyful ! In a Severan Christ's name.....Amen !


Ricky Drake said:
As a standard, cochlear implants would be covered completely by insurance but not if removed by surgery. One would be better off with hearing aid because he or she can have absolute control over it with ease. In most or all cases, hearing aid won't be covered by insurance, unfortunately.

Anonymous said:
Parents with their advocacy for ci should wait until their children grow up and make their own decision or the parents will have to face the consequence from their grown-up children. The parents should not afford to lose love from them, too. I already heard more than enough of grievance from those cochlear implanted children against their will.
I am excited about that movie. I will spread the word to my family and friends and let them enjoy watching it, too.

Anonymous said:
I am against cochlear implants, The effects that causes in deaf people wearing ci after the surgeries, It is no miracle, The doctors don't care about the side effects and just want money, I am deaf myself and also have a deaf daughter, and deafness run on my side of father's family, None of us accept cochlear implants.


Ci Circle Reaction:


I haven't had a chance to read the comments but in all likelihood I would have
read something similar on some of the blogs I have been on of late.

To be fair I have met some really wonderful members of the deaf community who
are open to cochlear implants and genuinely want to hear about how our kids are
doing with their implants.

For some of those that write the kinds of posts you are speaking of, there is
a whole generation of people who as kids were forced to be raised orally at a
time when cochlear implants and hearing aid technology weren't what they are
today. Many wanted to sign and were forbidden. Imagine yourself that you can't
hear enough to work out what anyone is saying or learning a language you can't
access and you are trying to get an education at the same time. Many of them
went onto learn sign language and finally found a way to communicate. They are
very scarred and traumatised by their lives and the way they were treated and as
a result compare our kids to what they went through. Of course we know that for
our kids it is nothing like that, but they can't see past their own hurt and
pain to see that.

I'm not condoning the continual perpetuation of misinformation, it enrages me
in the way that it does all of you. However I do understand why some peole are
the way they are and that no amount of me telling them my child's experiences
will change their mind, they are just closed off to wanting to know what the
reality really is.

That is why the internet is so powerful for parents like us, we can blog about
our kids and their successes, we can put videos up for people to see and hear
our kids. It is this generation of kids that are really going to break the
stereotypes, and educate the wider community at large. They will do this because
they will live and work alongside their hearing work mates and apart from their
processors no-one will notice any difference.

It is also incumbent on us as individuals to continue to spread the word and
get accurate information about cochlear implants to parents of newly diagnosed
kids so that they might make informed choices. The brochure created here is sure
a great way to start.

So by all means continue to comment and respond but know that there are people
who you will never change their minds, and at times each of us has expended a
lot of energy trying to do just that when our energy can be used for a greater
good somewhere else.

regards,
Naomi

*nodding head in agreement*

Tuesday, April 8, 2008

Heading Back to Grosseto


We're heading back to Grosseto in about four hours. Finally, finally, RALLY CAPS is going into print in Italy, nothing like running twenty-three hours a day and dealing with the publishing company by email that last hour! It's called living...and I really like living.

We had an incredible visit (do I have to go home??), I was blessed to spend some intense quality time with family, friends and above all, my son. Sometimes, we get lost in the daily grind and don't really get in as much of that quality time as we'd like. We made up for some of that in the past eight days, and it was badly needed.

I heard Rachel's got some good stuff going on her blog, I'm so behind everything...I'll be playing catch-up over the next few days, looking forward to it!

And now for the twenty hour day of traveling...definitely worth it to get home to my man and my girl!

Btw, thanks for your comments on the wedding pix, it's the first time I've posted pix in a long, long time.

Sunday, April 6, 2008

Living the Fairytale





FUN!!!!!!!!! SENSATIONAL!!!!!!! BEYOND ANYTHING YOU COULD EVER IMAGINE IN ONE WEDDING! I will say that castle living suits me and I could get used to being a princess. Note: if you continue reading, you will throw up.

All I can say is that the very little purple dress blew everyone away, even in New York in a castle...and my son, the bomb in a tux! Jordan picked up the hottest chick on the first dance and busted some robot moves. I never left the dance floor and the band...UNREAL!

After telling my life story and talking about my Tuscan experience about twenty times, I decided I was a single mom living in Alabama. That shut everyone right up. *smile*

What is it about older men...when they meet a woman with red hair is that some sort of signal? I had no peace.

The food...let's just say I hit every country represented and had about 20 jumbo shrimp, duck wraps, filet, crabballs, lambchops...I actually got insulted when a waiter came around offering pigs-in-a-blanket *double smile*
I conversed with men who mountain climbed in Nepal, actors, dads, and some woman who kept saying "Sue" who I thought was introducing herself, but was really telling me the name of the designer of her hot dress.

Two of my mom's friends didn't recognize me, they said I looked European. I did.
Did I mention the band rocked? Freaking unbelievable time. We got down castle-style.



BTW...my stepbrother and his bride were beautiful, in love, emotional, and having the best time. The ceremony made me cry and Jordan carried the rings like a champ.

Tatiana looked like a Russian spy and kept trying to convince me to take a train to Manhattan to go clubbing at midnight. I'm an old married mamma, some things must be left undone. Although had they brought a pole onto the dancefloor, I may have considered swinging around that thang.

My mom...my mom was the most beautiful woman in the entire wedding, except for the bride. The most special moment was dancing with my mom and sister. Note: Niki was wearing a vest, shirt, tie and pants and people kept asking her for directions to the bathroom...dying. (She finally had enough and told one woman, the bathroom was up her ass) I must post pix.
Gavril Bin Yakov (an alias) said that, "Dancing is tribal." I agreed. He told me to go study some anthropology. I'm considering it.

Amazing.

There was an "after-party" in the castle library where there were cigars, Gran Marnier, Champagne and a sensational jazz quartet. I had a coffee flambee Sambuka drink,
orgasmic and beyond...overlooking the castle gardens. The bridal party tried to convince me to go to the "after-after party" but I declined. Instead, I went upstairs and slept with my sister.(don't be jealous ladies:))

The next morning, this morning, I woke up depressed until there was a knock at the door. I opened the door and a man carrying two bouquets of two dozen red roses smiled and handed me the flowers.
I thought this was typical castle procedure (lol). I opened the cards. One bouquet was for Niki and the other one was for little old me. They were from my husband, I died. (He also sent two dozen to my mom *gasp*) Okay, my mom is interrupting me and wants me to clarify that Luca sent 75 red roses in all, and that she has just finished cutting them to put them in vases.

I think he might have been a little worried about that short purple dress...rotfl.

(BTW, Luca, Freddy said you made him look REALLY bad and that he was going to email you about the roses:))

I have to go unpack, wash clothes and chill with Jordan...back to reality -
Damn, I could really get used to living the life of royalty.