Sunday, March 29, 2009

Tuscany... In the Clutch

 

Okay, here's the story behind the story:

I have been psychotic for the past seven months because I have been struggling to reach an objective: Pediatric Courses on Newborn Hearing Screening and Deafness for the Region of Tuscany.

It all began just after the NHS 2008 conference in Cernobbio. I went surfing the net regarding Newborn Hearing Screening and found this study in the journal Pediatrics:

Primary Care Physicians' Knowledge, Attitudes, and Practices Related to Newborn Hearing Screening
(Mary Pat Moeller, PhD, Karl R. White, PhD and Lenore Shisler, MS).

I approached my pediatrician Dr. Giovanni Lenzi of Grosseto who also happens to be the Secretary of the FIMP (Italian Pediatric Federation)Grosseto of the Tuscan Region. He found the questionnaire interesting, so Luca helped me translate it and Dr. Lenzi adapted it to meet Tuscan standards.

It just so happened that my Cochlear Implant Surgeon, Professor Stefano Berrettini of Pisa, had just had his Guidelines for NHS passed by the Region of Tuscany, so we attached his guidelines for screening to our questionnaire and Dr. Lenzi distributed it at a Regional Conference where 58 pediatricians out of 180 attending completed the q.- 30 % Note: Each pediatrician has 1000 children in care.

The results indicated, without going into detail because I'm not really sure that I can, that 1% of Pediatricians surveyed felt adequately prepared to handle a newly diagnosed deaf child. Based on our study, the President has granted us a 1 hour and a half Satellite Symposium at the National Conference to be held in September.

But more importantly...

The Tuscan Region just approved courses on Newborn Hearing Screening for pediatricians, so that we will be able to provide the necessary information which will enable pediatricians to meet the needs of the families.

So that this:

Why didn't ANYONE...ANYONE just tell me he was Deaf? Why did it take 9 months for my little boy to get amplified? Why couldn't all these doctors, audiologists, nurses, and even social workers look me in the eye and tell me that my child is Deaf. Did I look like I couldn't take the news? Is Deaf considered a dirty word among all these hearing loss professionals? WHY COULDN'T ANYONE HELP MY SON?

...does not happen to another mother.

It has been an exhausting seven months of battles, tug-o-wars, insisting, and demanding- but it has been well worth it.

I would like to add that just when you think if you never see another doctor the rest of your life - that would be really okay- a miracle occurs.

My most humble thanks to Professor Ferdi Grandori, Leeanne and Janet from Hands and Voices, Ann from Aussie Deaf Kids and aboveall, Prof. Karl White for immeasurable acts of kindness and words of encouragement in moments of desperation.

My endless thanks to Dr. Lenzi and Prof. Berrettini for helping me reach this objective.

But aboveall, thank you Luca for dealing with my moodswings, last minute crises, translation demands and for being the best father in the world in absolute.

*Wiping Sweat and SMILING!!!!!!!!!!!!!!!!!*

Friday, March 27, 2009

The Queen and I


I'm on the train travelling between egos, listening to my ipod and trying to collect my thoughts. I've been wanting to write about a conference that was held in Rome on Tuesday where I met a member of the CI Circle for the first time. Anne!!!!!!! Kind of an emotional experience for me. As we speak, little Ci Circlers are convening in LA- Rachel, Naomi, etc. It is a great feeling to actually come into contact with people with whom you have shared so many virtual moments.

I'm working on three hours of sleep here, not good for the bags under my eyes. My friend called me at 4,30 from Dubai- she needed an on the spot interpreter..wonderful, I thought someone had died- never a good thing, a phone call at that hour of the morning.

Anyway, back to Rome. It was a conference sponsored by the Swedish Embassy on the cochlear implant...in attendance: THE QUEEN OF SWEDEN!!!!!

I shed tears. First of all, we watched the procession of her arrival at the hospital via wide-screen in the conference hall. Gracious, beautiful. Never in my life have I ever seen a woman look good in orange- she wears her title well. She stepped up to the podium and proceeded to speak the most melodic English I HAVE EVER HEARD!!!! She said how deaf children hold a special place in her heart, how she has been working to support cochlear implants and a deaf child's right to speak. I don't know how to explain this, but the idea that a QUEEN could actually care about my son's disability...touched me immensely.

Then...SHE arrived: Ann-Charlotte Wrennstad Gyllenram. From the moment she opened her mouth, mine was on the floor. Now THAT is a kick-some-ass for my kid- take on the political sytem...NEVER TAKE NO FOR AN ANSWER MOM! Many times during her speech, I felt the strong urge to leap from my seat and run to smack her five. I controlled myself, barely. Every now and then I would turn around and look at Anne to say, "I WANT TO BE LIKE HER!!!" Her speech touched on everything I am trying to work on now in Italy and she has been dealing with political bullshit much longer than me in Sweden. Really, it was a revolutionary moment for me.

Emotional experience, exhilarating. The kind of conference that motivates you to take on the world...

*AND*

I just happened to meet the President of the FIADDA (which I guess would be the equivalent of AgBELL) and a representative of the ENS (which I guess would be the equivalent of NAD). So, obviously I requested their support for my project. They said, no problem, send me an email.

So, I did...only by mistake I sent the Pres. of the equivalent of AGBell, the letter for the President of the equivalent of NAD...

If I manage to pull this off...it will truly be miraculous.

Wednesday, March 25, 2009

Congratulations to Rachel and Val!!!!!



The charity book project, I Don’t Believe My Ears, is finally completed after several months of assembling it together. Val Blakely from Cochlear Kids and Rachel Chaikof from Cochlear Implant Online would very much like to thank all these contributors who submitted wonderful and humorous stories:

Abbie Crammer at Chronicles of a Bionic Woman
Amy Kwilinski at CochlearImplant.net and Auditory Verbal Parents
Ann Lovell
Beverly Spenser
Diane Beltrami
Jodi Cutler Del Dottore at An American Mom in Tuscany
Kara Hendrick
Kim Larsen at The ASL-Cochlear Implant Community
Kimberly Pendley at Can you hear me?
Leaf Leafler at Say What?
Leslie Hine at The Hine Family Est. 1996
Liz Hupp
Melissa Chaikof at Auditory Verbal Parents and Cochlear Implant Online
Melissa Krilosky at Our Journey to the Hearing World
Samantha Trueblood
Val Blakely at Cochlear Kids
Vicki

All proceeds will go to Deafness Research Foundation, a non-profit organization 501(c)(3) that works to fund research to help those living with hearing loss and balance disorders, and on programs to raise awareness of potential causes to protect those at risk.

Go order one today and help create a difference for today’s generation and the future generation of deaf people and have some good laughs!

Sunday, March 22, 2009

Pasta, Olive Oil and NHS


It's that time once again for a poem...
MOON-CATCHIN' NET
By Shel Silverstein

I've made me a moon-catchin' net,
And I'm goin' huntin' tonight,
I'll run along swingin' it over my head,
And grab for that big ball of light.

So tomorrow just look at the sky,
And if there's no moon you can bet
I've found what I sought and I finally caught
the moon in my moon-catchin' net.

But if the moon's still shinin' there,
Look close underneath and you'll get
A clear look at me in the sky swingin' free
With a star in my moon-catchin' net.

I recently received the news that my cochlear implant surgeon Professor Stefano Berrettini of Pisa, my pediatrician Dr. Giovanni Lenzi and I will be presenting a one and a half hour Satellite Symposium at the National Congress of the Italian Pediatric Federation as a result of our study adapted and based on the following study:
Primary Care Physicians' Knowledge, Attitudes, and Practices Related to Newborn Hearing Screening
(Mary Pat Moeller, PhD, Karl R. White, PhD and Lenore Shisler, MS).

*Special thanks to my husband for dealing with me*

Of course, I feel no need to stop there, but would like to implement a national campaign on Newborn Hearing Screening by incorporating our questionnaire as an online survey to be distributed to all Italian Pediatricians. (Never believed in thinking small)

I have a meeting scheduled with the FIMP President on April 2nd.

Uh-huh, just him and me.


*smile*

Saturday, March 21, 2009

100,000 Visitors: Thank You for Reading...


I remember putting the visitor counter on my blog page and wondering how high I should put the ticker..hundreds? thousands? ten- thousands? Yesterday, it ticked 100,000. Miraculous.

I have been so fortunate to have met a community of bloggers, commenters, readers and critics who have enriched my blog and my life. Not all of you realize it, but you have accompanied me on a journey of growth and enrichment. You have shared in my family's moments of joy and pain as well as those of many others.

Blogging is an extremely humbling experience that requires that you open doors that otherwise may have remained closed. Insults have flown, confessions have been made, we've flirted, flipped each other off and kiss-fisted.

We never touch each other...on a physical level.

But I can assure all of you, that I have been touched on so many other levels.

Thank you for reading...

Friday, March 20, 2009

ABC...I Got a Full Ride to College! Proud Moments

One of the greatest parts of support groups is that while we offer support in the difficult moments, we also scream for joy in the proud ones...Two parents shared a couple of those moments this past week.

Here's one!!!!


*And here's another*

From the mouth of a proud Mother...

Hello All. I've been sitting on this news for a couple of weeks now. I have hesitated to share it because it has taken me this long to fully grasp the situation in a rational way.

Back in late February, John was notified that he was selected to receive the Presidential Scholarship at VCU, which offers full tuition/room and board for 4 years. A few days later he received word that he had moved on in the competition and is now a National Merit Scholarship Finalist. About a week later, John received a phone call informing him that he has been chosen as a Park Scholar, which includes a full scholarship for four years to NCSU. The Park Scholarship is very competitive and candidates go through a rigorous process filled with interview panels, evaluated group activities, and interviews with the Director of the program and even the President of the university.

The Park Scholarship includes full tuition, room and board, books, fees, personal and travel expenses, a computer, and study abroad grants. More than the financial award, however, are the unique opportunities associated with it. There are retreats, internships, time spent with high
ranking officials such as Supreme Court Justices, US Senators, State Attorney Generals, and opportunities to serve the community through the Park Scholar service initiative. I don't think any of us reasonably expected John to be selected for this amazing program. He honestly just thought, "Nothing ventured, nothing gained." when he decided to apply.

I have to admit to you that this news brought out the most emotional response I've had in years. I'm talking body-wracking sobs, snot flowing freely down my face, uncontrollable tears. I am becoming emotional just writing about this. When I look at him, I still see that little boy who couldn't talk. I still hear the voices of all the people who told me he'd never talk, that he was mentally retarded and possibly autistic, that he should be placed at the State School for the Deaf where he could "be with his own kind", and that his dad and I were committing nothing less than child abuse by insisting he learn to speak and be able to have the same education as any other child within a mainstream classroom. And yet I also see the young man that he has become.

John did raise the issue of his deafness very briefly in one of his essays he included with his application. After that point, it never came up again. I wondered if he'd be asked about it during one of his interview panels. I wondered if the panels were informed of his situation and would treat him differently. He went through a round of interview by panel (visualize John sitting alone in a room facing 4 complete strangers firing off a series of questions at him that required him to think and respond very quickly) to get to the Finalist stage of the competition. It was obvious to him that he was experiencing the same situation that every other semifinalist was experiencing.

Then, the 100 finalists had to spend a weekend at NCSU, participating in one very long, nerve wracking, mind numbing day filled with more interview panels, a small-group problem solving activity, etc. He did all of this independently, relying on nothing more than his CI and his HA. Again, he was treated like any other finalist. He told me he suspected the people involved didn't even know of his situation. Which suited him just fine as he wanted to be accepted or rejected based on his own merits. That had been our goal all along, but I could never, in my wildest dreams, have expected all of this.

We are incredibly grateful for the opportunities he's been given. We are also incredibly amazed by him and how hard he has worked to get to this point. We are so grateful for all of the kindness and support we've received over the years to help him get here. Those of you most familiar with us know the trials and struggles we encountered as a family. And of course, the challenges John faced and overcame because of his determination, willingness to work hard, and positive spirit. God has blessed him indeed.

It has been very difficult to take all of this news in. In 10 days time he was offered two full academic scholarships and named a National Merit Scholarship Finalist. I will admit that I have had very irrational thoughts. It all seemed far too good to be true. At one point I quite literally thought that I was dreaming and when I woke up none of it would prove to be real. While I refused to listen to all the naysayers in his life, the mother in me always worried if the rest of the world would see him how we see him. I suppose some do.

John told me that he saw a t-shirt at a track meet recently that said, "You didn't prove all those who thought you couldn't Wrong. You proved all those who knew you could Right." And that's how he chooses to look at it.

Thanks for letting me share.

image by www.ccb.vic.edu.au

Wednesday, March 18, 2009

Bitch

I don't quite know how to explain this, but today...life required me to be bitchy.
I rose to the occasion. Actually, I'm getting kind of used to it. Don't like it- but it seems to work for me.
Wouldn't it be so nice if someone would just say, "Okay, Jodi, no problem."

"Oh, The Good That Can Come Out of Pain"


...I cried when my friend wrote these words. Cross your fingers, I'll have the news I've been waiting for for the past eight months in four hours. In the meantime, I'd like to share some of the "Good" that has come out of so many parents' experiences...

Ann Porter of Aussie Deaf Kids and founding GPOD member has placed a description of the GPOD and the survey on her website. Click here: http://www.aussiedeafkids.org.au/gpod-survey.html

*I am currently assisting committee members to establish a- Children with Hearing impairment Parent support "CHIPS" group in Townsville Qld Australia. This support group will fall under the umbrella of Deaf Children Australia. We are working with a group of parents and Advisory Visiting teachers. The group was launched in march 2009

*I speak with parents of newly diagnosed children who are referred to me from NYU Medical Center and also Summit Speech School. Just this week I became a volunteer for the Bionic Ear Association.

*We work under our speech therapist and spea with the parents when required. There are no support groups.I blog to help other parents know that a deaf child can talk.

*I only provide some informal one on one support to other parents, via email and face to face meetings. I have some background in the Deaf community and can offer parents some resources and tips regarding their child's daily experiences.

*I am a Family Support Advocate for our local early intervention program.

*Have worked with Canberra Deaf Children Association for many years, not currently involved officially as my child is now 21, but am always willing to talk to any new parent and the current committee is aware of this.

*Not formally. Our family service worker asked us if we would meet with other families if the need arose (and we have). I am attending school to gain my qualifications to be a teacher of the deaf - I often bring my family perspective into discussions.

The list goes on...

Share your experiences by taking the GPOD survey here: http://www.surveymonkey.com/s.aspx?sm=5eHe_2bpFgBxwGqaf_2fisWQog_3d_3d

Monday, March 16, 2009

Parents Raise Their Voices: Anyone Listening?


Take the Parental Support GPOD survey here:

http://www.surveymonkey.com/s.aspx?sm=5eHe_2bpFgBxwGqaf_2fisWQog_3d_3d
More comments:

We were living in Minneapolis when our twin sons were diagnosed at age 2 with moderately severe hearing loss. We were soon involved with early intervention teachers, then later on educational audiologist, speech therapist, TOD through the school district YET somehow I managed to not be aware that I should take the children in to an ENT for all sorts of tests to determine causation and if there are symptoms of a syndrome. This is perhaps because we changed audiologists at the beginning. It seemed like we had so many professionals around us, but I realized later, when I finally got on-line to research IEPs and discovered Listen-Up.com that there was so much more to know about the boys' hearing loss and education.

My fault for not being sufficiently diligent, but was too exhausted to think straight and none of the professionals ever set it out for me. There was no package of written materials about hearing loss (I think there is now), but we were told about the support group now called Hands and Voices. I met with them early on, but most kids seemed so much worse off than mine. I did go to some educational seminars about IDEA, etc. They are lovely and helpful and I think now I have enough energy to partake of what they have to offer, but it was so overwhelming then. An acquaintance did hook me up with a mother of a HOH girl in the neighborhood and she was supportive.

Now we live in Hong Kong, and there seems to be very little here for English speaking HOH kids. It is hard to find an SLP with hearing loss experience and I haven't been able to track down anything like a TOD. The boys' school is supportive but does not offer such specialized services. We have to pay for them privately and they cost USD100-220 per session! I have met four other moms of HOH kids, just by coincidence (one through Listen-Up.com and one at church) and we have met a few times to exchange information.


*AND*

In India, if you don't help yourself, no one will help you. Most of the people who are in this field are only interested in the benefits they can make. Had it not been for my speech therapist my life was doomed for sure. We cannot trust anybody.It is a very sorry state and we need someone to help the deaf without an ulterior motive.

Note: We are just getting started. Thank you for your assistance and for taking the time to share your experiences...

Sunday, March 15, 2009

Go GAGE!!!!!

 

Val, Gage and the group have passed a very stressful period and they have taken an entire community with them, enabling so many people to learn from their experience.

Here is a recap:

Thursday, Dec. 11:

So as the conversation deepened on the subject, I asked Gage what would he miss most, while he couldn't hear should we need to remove his ci. His answer? "Music" Now how did know that?
I turned my head so he didn't see the tears fall and I turned up the radio, desperate to find ACDC...I mean what if we are down to our last few days of hearing? It could be months before he gets a new one.
It only took a couple of miles of driving in a desperate panic, disappointed there was not one Leona Lewis, not one Beyonce, not one ACDC song on any station, before I realized...this was all wrong. This was not a goodbye to the love of his life Leona, nor his obsession with Back in Black. It would be more like a break...so as any good mother would do....
I reached into the console and whipped out some my all time favorite rap songs. He loved them back when he was still a little parasite inside my belly. I swallow the lump that had formed down in my throat and said "Gage, why don't we listen to some rap songs? Instead of just listening, start paying more attention to the way these songs feel. Then if you have your ci removed, you'll still be able to keep up with some of these songs, just by feeling instead of listening." He looked at me and just halfway smiled, "hmm, okay" and a minute later he says "Mama, would I still be able to talk?" I smiled and said "of course you can still talk." He replies "But mama, would I say my /r/'s right?" I told him lots of hearing people don't say their Rs right so no need to worry, people would know exactly what he was saying. He's always been self concious about his speech w/out his ci.
I'll keep everyone updated as news unfolds...

cool Gage

January 27th:

I hate the little set backs we keep having but sometimes we need to be slowed a bit. I've asked for patience, strength, and I've gotten both. I've managed to once again, slow down, enjoy the ride. I had to have a talk with Gage the other night, he's extra bored, extra ADHD, extra OCD, since the ci removal. In fact my nurse today (I have asthmatic bronchitis) asked me "he's a little OCD isn't he?" Not in a derogatory way, just noted it. He NEEDED to move her pushpin that held up a poster, they weren't even **smile** Anyway, back to Gage needing a "talk". Brook came to me and said "Gage hates me, I know he does."

This is after she's already noted his aggressive behavior w/out his ci. I sat them down, we all three cried. He's been nicer/calmer ever since. I explained that things may not seem fair right now. He had his ci removed, he's not getting to hear the songs on the radio, he's not getting to go to school, but it's all temporary. Things will go back to normal for us soon. And if not, we'll create a better, newer normal. But I asked him to be nicer to his sister, and the look on his face was all I needed to shed a few tears. He knows he's not himself, but he can't help it. That's what I tried to explain to Brook. So far, we've all gotten along much better. And here's to my patience and my strength. I have to ask for it everyday!

Warrior Gage

Thursday, March 12th:

These are questions I've answered tonight about Monday's bilateral cochlear implant surgery....

Am I gonna bleed? (um, some)

How long will I be asleep...30 min or 2 hrs? (until they finish, we want them to be really careful)

Why haven't they tried to put one in that ear before? (they have, you just don't remember)

What does the knife look like, does it look like Daddy's camo knife? (no, it's a silver doctor's knife)

He's again named many things he wants to hear, and Brook's voice has moved to the top of the list!! He still didn't mention me but hey, he reads me so well, I'm his interpreter at times, he doesn't HAVE to hear me! I likely won't post again until after the surgery is complete. But I'll update asap. I'll keep my facebook updated throughout the day though!


GO GAGE, GO!!!!!!!

Friday, March 13, 2009

Parents and Children Abandoned by the System


This was a recent post to an Italian support group:

You may not believe me but I have never found support in any aspect of our situation with Marco. Not one person has stepped forward to assist us, not even the Federation dedicated to helping families with Deaf children- and I'm afraid to mention names. I will say that I received a response from them saying that they can only help families of children who are cochlear implant recipients. I even wrote a letter of protest to the National Federation Headquarters.

The child psychiatrist? How can I get in touch with him? Privately? Jodi, Marco's doctors initially told me that they were in no way in favor of requesting a support teacher in the classroom for him. What can I say??? Anyway, I know that it is difficult for you to understand, but I HAVE BEEN ABANDONED BY THE SYSTEM WITH NO TYPE OF SUPPORT WHATSOEVER!!!

At this point, who do I fight?? I would need to go after everyone for the way in which this situation has been handled. In all of these years, no one realized my son was Deaf...from the ENT to the Pediatrician- what else can I say???

Unfortunately, this is not an uncommon situation.
Please take ten minutes to take the GPOD survey, so that we can work to improve the system and ensure that parents receive support globally...
http://www.surveymonkey.com/s.aspx?sm=5eHe_2bpFgBxwGqaf_2fisWQog_3d_3d

Calling all Bloggers: Please post the survey on your blogs, as well. We are a powerful bunch when we work together...Thank you.

Thursday, March 12, 2009

Kickin' Off Parental Support Week: Don't Hide the CI!


Okay, it's Thursday, and I don't think that a real, official Parental Support Week exists, but what the hell, we bloggers are CREATIVE!!!!! And I have a survey to push, so the Week starts now- never did like Mondays!

One person who completed the GPOD survey wrote:

...I could write a book. My daughter, now 18, was born before the age of the Internet. Even so, I am convinced that facilitated group parent meetings (with child care for siblings), and other opportunities to interact with other families (i.e., family sign language classes, again with child care provided) were the most empowering for me and made me feel connected (not isolated). Deaf parents were also well represented in our group parent meetings. We shared a common bond of parenting, but they were also positive role models for me to envision my daughter's bright future.

Please take ten minutes of your time to take the survey here:

http://www.surveymonkey.com/s.aspx?sm=5eHe_2bpFgBxwGqaf_2fisWQog_3d_3d

As we all know, I get my support from yahoo groups like Listen Up, Learn2Hear and the Pediatric Cochlear Implant Circle.

This week on the Circle a mom wrote:

Hey guys,
Mia is having her first communion in about a month. She has been home and I have been homeschooling her...due to the stitches(it's actually been fun ad easy...makes you wonder what they do at school with all their time?)
Anyhoo:
So my mom calls to talk about Mia's communion and asked me if I bought her anything for her hair...like a veil...crown etc. I told her i do NOT want her to look like a MINI woman who is getting married but a little girl.
To which she says,

"I hope you will keep her hair down at least for that
one day ...with the pictures and all she might not want to see those things!!!!!!"


I could not belive she said that. I am not shocked as she raised my brother who is now an adult...he is very self-concious about his hearing aids.
I told her she will have her hair up...in a high ponytail...with beautiful
diamond hairpins.... and I will make sure to get a LOT of bling bling on her cochlear implants and the coils just to bring even MORE attention!!

My mom just stayed quiet.

I mean GEEZ - wonder who is in denial and still embarassed here?!


You have to understand that this is Mia's Mom's Business...a business created with love and passion based on her experience with Mia.



There were many responses to Eva's post, here are two of those responses...

...Forgive me if I offend, but it's this kind of mentality that breeds more discomfort than anything. I may only be 43 years old, and my parents may come from a different generation, but it has been my enthusiasm, comfort, and positive outward processing that has helped the older folks let go of that old-age mentality. Embracing yes, their feelings, accepting it as their norm. Absolutely not. It's been that positive mentality that I have seen with not only my own child, but many parents who also provide encouragement to their children even when their child may be stared at, or even treated poorly.

It's the parents who try to work on both sides of feeling okay, a giving up to
those who can't seem to grasp the realities who have bread long term feelings of
not just them being okay, but the kids not being okay, and kids not able to
adapt to various situations, and then truly adopting that something must be
seriously wrong with them personally, not that they can't hear. Not hearing, and feeling like something is wrong are, in my opinion two different things. So the reality is my child is deaf, but he's a terrific kid and because someone does not get that he's deaf, wears a device that sticks out is not to be embraced by the naysayers so to speak. I will again apologize if I offend, but however this line of thinking that I see and hear drives me nuts.

Blessings,
Elizabeth

(Elizabeth writes a blog that you can read here.)

*AND*

Hi Eva,

I don't write much anymore, but do still read all the posts, and I felt compelled to reply. You have always been there for me, so I wanted to just let you know that I support you too!

I have often thought about my daugter Sophie's First Communion Day, dances, proms and even her wedding day, and how she will wear her hair, what about her processor/HA-will she even go to dances?, will boys be afraid of her because of them:, etc.

Then I look at how beautiful, fun, smart and sweet she is, and I don't worry about it anymore. We are fortunate because Sophie's CI doesn't really seem to be on anyone in our family's radar; but I completely sympathize with you and dealing with your mother's feelings. It sounds to me as if she is still in denial.

She needs to look at how gorgeous Mia is, how fun and smart she is and how hard she works and how far she has come, and not worry about something as stupid as processors. We were in a restaurant the other day and the waiter had some hearing/communication thingy on. Sophie got all excited and started rambling to him about his CI and her CI. Of course he was just a kid and had no idea what she was talking about, so we of course took the oppourtunity to explain.

As I look at pictures of Sophie when she was little, I am a little mad at myself for not having more pictures of her wearing her hearing aids as a baby (denial at the time...) as they are just as much a part of her as the outfits she wears. And with her own First Communion a few years away (they do that in 2nd grade here and she may be repeating Kindergarten) I feel quite confident in putting her hair up. Girls here
do wear veils or wreaths on their heads if they want to (Pre-Vatican II cover the head in church out of respect type modeling), she can if she wants, but doesn't have to.

Her hair looks really cute up and I have no qualms about hiding her CI/HA. They are just a part of her and she is who she is. We tell her all the time that God made her special and she accepts that (at least for now...). You should tell you mom that Mia is learning all about tolerance, diversity and acceptance at school, and SHE(your mom) needs to help by being a good role model and get over the petty concerns about how Mia's processors will look.

Julie W.
Sophie and Clara's Mom.


*In the end, we are all parents who live similar experiences...and who better to help us through raising our children, than other moms and dads just like us?*

Wednesday, March 11, 2009

THE POWER OF PARENTS IN THE PROCESS: RAISE YOUR VOICES


THE TIME IS NOW. The little group under the tree at the Newborn Hearing Screening International Conference 2008 took the oath to try to make a difference in improving parental support on a global level. Now we are requesting your help.
PLEASE TAKE TEN MINUTES TO COMPLETE THIS SURVEY:

http://www.surveymonkey.com/s.aspx?sm=5eHe_2bpFgBxwGqaf_2fisWQog_3d_3d

PURPOSE OF SURVEY
The results will be used to produce formal recommendations for Best Practice in Family Support and will be presented at NHS 2010 in Como, Italy – the final international conference on newborn hearing screening.

WHO IS COLLECTING THIS INFORMATION?
The survey is being undertaken by GPOD – a Global Coalition of Parents of children who are deaf or hard of hearing - which was formed at NHS 2008 with the goal of "promoting improved systemic protocols and practices which encourage informed choice and the empowerment of families with a deaf child throughout the world."

This survey will be distributed all over the globe- Australia, UK, USA...to be translated in Italian *smile*, etc. In one day, after presenting the survey to the parents of the Pediatric Cochlear Implant Circle, we have received over 100 responses. We are only just beginning. The more information you supply- for example there is a section where you can tell your story- the better our Recommended Guidelines document will be.

Here are some responses that the survey has generated thus far:

...It is very important that parents are supported in the choices they make for their children, by both educators, other parents and their extended families. As a parent you have to be well informed about your choice of communication with your child and you have to believe in what you are doing and trying to achieve. Our son is profoundly deaf (bilateral), communicates through Auslan (initially signed English), speaks all the time as well and has excellent writing skills. He has just commenced a degree at university! We are very, very proud of him and all he has achieved.

...Big difference between diagnosis of unilateral loss compared to bilateral loss in regards to all aspects of care ie. support, information, appts, early intervention - everything!

...Big difference between diagnosis of unilateral loss compared to bilateral loss in regards to all aspects of care ie. support, information, appts, early intervention - everything!

Please, please raise your voices and take ten minutes of your time to complete the survey. We really are at the right place at the right time to smack the system in the ass.

*Smile*

Thank you...
GPOD - (Global Coalition of Parents of Children who are Deaf or Hard of Hearing)

PS. I'm kicking off Parental Support week here on the blog, don't think it exists, but it's starting now...

Tuesday, March 10, 2009

Monday, March 9, 2009

Shhhhhhhhhhhhhh!!


Miraculously, I managed to drop Sofia at school on time this morning. When I arrived, the other Mammas looked at me and started laughing. Nothing unusual. I said, "Now what?"
See, yesterday was "Women's Day" here in Italy, a holiday honoring the women who lost their lives working in a warehouse in the states way back when...
On Women's Day, all of the princesses and queens head out for a rockin' dinner among friends. (Note: this queen stayed home and slept)
Apparently, my mother-in-law was spotted dancing on the table at a local pizzeria.


Must have been the laundry...

*AND*

You know what they say...

Sunday, March 8, 2009

Toughin' It in Tuscany

Life is not good when you are on DAY THREE WITHOUT WATER AND INTERNET!!! So, we abandoned ship and headed for the beach...AMAZING DAY HERE IN TUSCANY! And to top it off, a brownie McFlurry from McD's- it ain't Steak n Shake, but it sure goes down smoothly!

Note: My mother-in-lawndry is a saint. She washed about twelve loads of dirty clothes. Keep in mind- she irons underpants and separated each family member's clothes in a different bag AND put my panties in their own little ziplock baggie...UNBELIEVABLE!

Thursday, March 5, 2009

Guitar- Strummin' Jordan: Video

Okay, I'm losing my mind. I don't know if any of you have realized this, but I don't post videos of Jordan because my flippin' computer refuses to upload. So, finally, I hightailed my butt to a computer technician, brought along my laptop and begged him to figure out a way to upload. He still hasn't figured out how to fix it, but in the meantime, he let me tinker on his computer, so I managed to upload this video to my blog from my computer key...Note: this was Jordan's Christmas Recital- he's strummin' "Jingle Bells!"

video

Monday, March 2, 2009

Hiding Your Deafness = Being Ashamed??


After translating into Italian Karen Putz's post: Are You in the Deaf/Hard of Hearing Closet? I received a response that I really liked. I wanted to re-translate it into English just to give you a better idea of how experiences are universal.

The gentleman who responded, Giovanni, wrote the following:

I read this woman's experience on Jodi's link and the insensitivity of teachers - especially Music teachers- never ceases to piss me off. Trying to teach a deaf person music even when the person has access to amplification is like trying to put Maradona in a wheelchair. Had I been the mother of that girl, I would have strangled the teacher.

Speaking with regard to the specifics of the subject and thinking about my own experience, what can I say? Over thirty years... it's impossible to hide one's own deafness, moreover it is counterproductive. If someone calls you and you don't respond, that individually rightfully thinks that you are ignoring him. But as soon as you say, "Oh, I apologize for not responding. I'm deaf."- everything is okay. This has happened to me a million times.

And thinking about what the others were saying regarding when I don't hear something and someone responds, "Nevermind," or regarding the difficulties associated with group discussions- I can't tell you how many times I get pissed off when I can't understand or follow a discussion with three or four participants (the cochlear implant isn't a miracle, even though it does help) and so I throw out a "what'd you say?" and people respond, "NOTHING!" Always that damn, "NOTHING!" And I am left curious and frustrated.

I have never hidden the fact that I am deaf (to hide would be the same as feeing ashamed, Jodi?) if someone looks at me in such a way that I realize they are waiting for "an answer," I have no problem telling them that I am deaf. Maybe because I accepted that fact that I am deaf so many years ago, perhaps also because I know I am not alone: in Bologna there were about 200 of us and when we went out, no one was embarrassed to sign, even when people looked at us as if we were aliens.

I don't know if this was the point of your blog post, but this is my experience.
Saludos.

*Hmmm.*

"To hide one's deafness = Being ashamed, Jodi?".

Good question. I'll respond from the perspective of a mother of a deaf child. Hiding Jordan's deafness would not have been a fair choice in respect to him as an individual. I WANT the people surrounding him to know that he IS DEAF, so they can better meet his needs. When people see his ci processor, they realize that he may have difficulty in a noisy environment. If his teachers see his processor, it will remind them that they need to concentrate on maintaining less of a chaotic classroom situation. And if, by chance, some sort of accident happens and I am not by Jordan's side, whomever rushes to his aid will see the processor and know that he is deaf.

*But ABOVEALL*

I have never hidden his processor using the "long hair" method, because I want my child to be conscious of the fact that I am not in the LEAST bit ashamed or embarrassed by the fact that he is deaf. Then, when he grows up, he will make his own choices as to how to live his life.

The more we speak about issues in deafness by means of internet and television - the more awareness there will be in such matters, so that people will always have less fear, less questions and less absurd reactions.

Sunday, March 1, 2009

Sunday Morning Sex


Slammed. And struggling to recuperate. This has been one of the heaviest weeks all year. Dealing with doctors who have to deal with patients, surgeries, paperwork, emergencies while trying to meet MY agenda is exasperating. I have been patient, understanding, respectful and weak. No longer. This week, I had two heated arguments with two professionals and FINALLY asserted myself and the work I am trying to accomplish.

I believe I may be getting somewhere. Passion and international connections don't hurt.

I am one frustrated American mom in Tuscany.

At least I was...

In any case, something remarkable happened this week. As I've mentioned, I am currently creating a Parent Mentoring Program through the University of Pisa. On Thursday, I took Jordan to Pisa because the mom of an 18 month old adorable little girl is considering the ci surgery and wanted to meet Jordan. She was the one who had spoken to him on the phone and cried. I think she wanted to be sure he was real.

We arrived and I knocked on the door of the office where they do the testing to find the mother wiping her teary eyes and the little girl running around the office getting into everything. Familiar scene, lol. The audiologist began talking to me telling me that she didn't know why the mom was crying and that the little girl was definitely a candidate for the ci. As I was talking to the audi, out of the corner of my eye, I saw the mom speaking to Jordan.

Jordan had red marker lines penned on his face and the mom asked him if they were leftovers from Carnevale. He said, "Um, every now and then I fall asleep in class (news to me)and my friends drew on my face." Then, he started laughing. I know he fake-slept and they drew on his face, also because he confessed this later in the day- no one in this family is normal. The mother started crying all over again listening to Jordan speak and "hear" even when he wasn't looking at her as she was talking.

The audi asked the mom to hold her baby for another exam, and I hugged Jordan. We watched the mom and her baby during the exam. The child wouldn't sit still and the mom was wiping her eyes. I said, "Jordan, this was you and me eleven years ago, do you realize that?"

He looked at me and smiled.

I said, "You were much, much worse! You wouldn't sit still for five seconds!"

He laughed and denied.

One of the most emotional moments of my life.