The Problem Child

Friday night I went to dinner with my friend Gabriella, who is a former "student" and teaches pre-school. For the record, when women go to dinner we don't just talk about sex and clothes, we get deep. After I told her my life saga, she nonchalantly told me that she was having a bit of a problem with the other teachers in her school, because of how she treats this one special child.

This little boy is now six years old and will attend Elementary School next year. Gabriella began teaching him three years ago...he was the type of child who refused to sit at the table during lunchtime, threw chairs across the room in anger, bit other kids, used his hands and never, never let himself be hugged or cuddled.

THIS is the type of child that changes the dynamic of a classroom...a teacher's worst nightmare, or if the teacher is sensitive and intelligent, her greatest gift. This type of child is "needy." This "neediness" requires that the teacher "give" a little more...a lot more. When a teacher recognizes this child's "cry for help" and answers it, she has the power to save a life.

What child doesn't need to be loved, hugged and told that he/she can conquer the world? Gabriella told me that this little boy used to say, "I can't do this!" "I am not good at that!" "I don't care!" As teachers, we never know what truly goes on behind the doors of these kids' homes, but when a three year old says, "I'm no good," he heard that from someone else. It is our job as teachers and PARENTS to motivate our kids and let them know that ANYTHING IS POSSIBLE.

A problem child in the classroom can be very frustrating for the teacher, because almost automatically, the teacher "teaches to that child" and not the rest of the class. Oftentimes, the "more intelligent" children are held back to maintain a solid equilibrium based on the problem child's mood of the day. Parents of "intelligent children" do not appreciate this decline in academic advancement.

What does the teacher do at this point? Does she abandon the problem child, let him throw chairs across the room, have him spend the day in the principal's office, etc? Or, does she fight the system and involve the rest of the children in something more important than academic growth...psycho-social growth?

I've always opted for number two. When a class of children sees that a teacher loves a child and that teacher renders that class participants in understanding the needs of another child, those children develop a level of sensitivity that goes way beyond anything that academics could possibly teach. Children have a remarkable capacity for sensitivity despite their natural state of being ego-centric even at such a young age.

JORDAN WAS A PROBLEM CHILD.
I felt guilty every time I left him at that Pre-School door, knowing that his mood of the day would directly affect the equilibrium of the classroom, the teachers and...the other children.
His classroom teachers were unable to control him and decided to concentrate on the rest of the class...
Luckily, and we have ALWAYS been so fortunate, he had a support teacher in the classroom who LOVED him, hugged him, took him out of the class for mental breaks and protected him. The classroom teachers hated her. I loved her. Jordan loved her. She helped save my son.

BTW, three years later, Gabriella has to let go and send her "Problem Child" to Elementary School. She told me that the other day they had a little fight because he wouldn't sit down and do his work. When he saw that she was angry, he walked up to her and said, "Gabriella, you are beautiful."
Gabriella asked, "How beautiful?"
He said, "Really beautiful."
She insisted, "How beautiful?"
He said, "More beautiful than the two dogs that are kissing on your shirt."
Then...he hugged her.

*SMILE*

Thanks, Leeanne, you totally made my day! (and I just woke up!)

Where the Hell is Matt? (2008) from Matthew Harding on Vimeo.
14 months in the making, 42 countries, and a cast of thousands. Thanks to everyone who danced with me.

Upside-down

This post is kind of about kid-stuff. My lunatic daughter of the golden curls has been scratching for the past four days. Scratching and whining, scratching and whining..."Mommy, massage my back" 5000 times a day, and I have been rubbing and rubbing and rubbing. Finally, she is healed. The weather here was cold and rainy for so long, until finally we had a full weekend of strong sun beach time, so that her skin reacted really badly. My kids all have my fair skin, poor them.

Why upside-down?

My insane Sofia Madyson eats her pizza upside-down. I cannot for the life of me understand why she takes a piece of pizza and turns it upside-down, so that the tomato and mozzarella are on the bottom with the dough on the top...just to aggravate me and destroy her clothes, or does the pizza taste better with the saucy stuff on the bottom? It's so illogical, yet adorable at the same time. I like it when my kids do abnormal stuff, it's the only time I'm really sure they're my kids. *smile*

Jordan has officially entered adolescence (Note: his best friend just proudly showed us five official hairs under his armpit, I almost passed out)because he now chats on MSN. Why do I see my life getting very physical as I will have to "take out" my son for computer time? Although, I think I'm having more fun than he is on MSN with all the little talking avatars. To give you an idea of how well he hears with his cochlear implant, his friend Agnese told us to hook up the webcam and telephone element of the computer so that he could talk and chat. He understands perfectly what they say through the computer speakers to the point that Agnese's brother was explaining how to download UNO from MSN. I sat back and smiled.

I went to meet with a school for a full-time job next year and they called me "solare." (sunny)I think they're going to create a position for me, we'll see. It was a productive meeting.

I was walking through the Corso and I ran into a family with a child who has a Cochlear Implant. They asked me where to get a copy of the book, I said right behind you. We were in front of a book store. The book was in the window. Giulio, the boy with a ci, saw himself on the cover...beautiful moment.

Next I ran into a mom I know who told me she had breast cancer.

Then, I saw one of my five year old students who ran up to me and gave me a hug.

Afterwards, I ran into Giulio and his family again, so I signed his RALLY CAPS book:
To Giulio and Fam,

I wrote this book for us, but I also wrote this book for your family. Giulio, you are a very special person and ...handsome. Kisses, Jodi

Giulio is a child who is not only deaf, but who has other disabilities. Hopefully, he will find a little of himself in the book.

Auditory Neuropathy Spectrum and Parent-Parent Support

Hold onto your pants, I'm about to get scientific...at least I'm going to try *smile* One of the major components of NHS 2008 was a consensus meeting on Auditory Neuropathy. Auditory Neuropathy is a variety of hearing loss in which the outer hair cells within the cochlea are present and functional, but sound information is not faithfully transmitted to the auditory nerve and brain properly.

Even with Universal Newborn Hearing Screenings (UNHS) being mandated in 37 states in the USA, sometimes children with hearing loss remain undetected at birth. Auditory neuropathy is a prime example, as most UNHS programs utilize either the Auditory Brainstem Response test or the Otoacoustic Emissions test as a screening tool. Rarely are the two used in combination due to the staggering cost necessary to implement such a program. This is an unfortunate reality for babies with Auditory Neuropathy- it is the distinct combination of present Otoacoustic Emissions and absent Auditory Brainstem Response that usually send up the initial red flags. However, parental suspicion of a hearing loss continues to be a trustworthy screening tool in the unfortunate event that Auditory Neuropathy would go undetected at birth.

If a parent suspects a hearing loss, that is sufficient reason to seek professional assessment of the child by an audiologist. The sophisticated family physician will recognize the need to refer to an audiologist if a parent expresses concern about hearing loss or speech delays. An audiologist is a specialist in the domain of hearing assessment, hearing loss, and aural rehabilitation. The audiologist can be extremely useful in the provision of information needed to guide newly diagnosed families.

*That was your background info, limited, I know, but that's about as much as I can understand about Auditory Neuropathy*

At the NHS 2008 Conference a panel of experts was deciding whether to change the term Auditory Neuropathy to:
Auditory Neuropathy (leave it alone)
Auditory Dys-Synchrony
Auditory Neural Disorder
Auditory Neural Spectrum Disorder
Huge debate, there was a panel of like seven Audiologists/Scientists including:
John Shallop, Gary Rance, Chuck Berlin, UUs,K etc and a moderator (whose name I did not catch:().
One Audiologist started speaking unintelligible medical jargon and
they were all debating over what the condition should be called,
should it be a disorder, a syndrome. One Audiologist, Deborah Hayes, (love her)
suggested Auditory Neuropathy Spectrum which I liked, because then
the Audiologist could explain the specific condition to the parent
when required.
The "Bigs" started ripping it apart and arguing. I stood up and
asked for the microphone (since the debate was open to the public) and said this:

"My name is Jodi. I am just a parent. I have tried to understand Auditory Neuropathy, and I find it extremely complicated. However, I do know that on the support groups when another parent asks a question about Auditory
Neuropathy, we have reached the point where someone on the group can
explain the condition and lead that parent to a specific support
group. This is already significant progress in helping a parent.
When that audiologist started explaining her diagnosis, not only did
I not understand a word she said, but it sounded scary and parents
do not need to be scared. Therefore, I support the term Auditory
Neuropathy Spectrum."

A pediatrician stood and supported me and said, "Those of you on the
panel are the leaders in the field, but not all pediatricians or
audiologists in my country are able to make the same type of
diagnosis at the level the panel is...(she was from New Zealand)"

Another speech therapist said, "I agree, I'm lucky if one out of a
hundred has even heard of Auditory Neuropathy."
Suddenly, the moderator of the consensus meeting turned red and
looked humble as if she suddenly realized that there were also the
parents and families to consider in their intense talk of their
latest scientific findings.

*Note: I really believe that sometimes scientists are so busy discovering new diseases or treatments, and THANK GOD THEY DO, that they lose that human contact that keeps them in touch with the very people they are truly working for...WE, THE PARENTS, but especially OUR KIDS*

They decided to name it as Auditory Neuropathy Spectrum.
The Audiologist thanked me afterwards.
What an unbelievable experience to speak up for parents in a Conference where we should so obviously have a voice.

When I "left this message" with the Pediatric Cochlear Implant Circle, one of the moms posted this:

We had a UNHS national meeting in my home city many years ago, I was asked as
the parent rep to that. You are so right these professionals are all well meaning but they often get so caught in the details they miss the most important part, the child and their
family!

Like when I was there they were arguing about whether they just do high risk
screening or screen all and does a complete screen get enough more than high
risk to argue for the cost. Then they got on to maternal depression about
discovering their child had a hearing loss.

I stood up and spoke to them of the many parents I have met and communicated
with who did not find out their child was deaf until they were 2 or 3 years old.
I shared with them the guilt they feel because "they didn't know, or should have
known, doesn't that make them a bad parent"....as you said Jodi my answer to the
maternal depression issue is to build support for parents into the protocol and
make sure they are supported through the process.

Here when a child is diagnosed there is a person that goes to visit the home
to discuss different options available with the parents. We have just recently
reaffirmed that relationship with that person and now when they go to visit the
parent they ask them if they give permission for their contact details to be
given to our state parent group so that another parent can contact them.

It has been brilliant!!! I have called mothers whose hearts are breaking, who can
barely string 2 words together without crying, I speak to them for as long as
they need and then tell them to call me anytime or I will call them in 2
weeks just to check in on them...the difference 2 weeks later always makes me so
happy, you can start to hear that strength coming back, that mummy gene kicking
in to do what it takes for their child.

The Medical Community plays its fundamental role, but so do the parents. Just imagine what could happen if the two came together in a collaborative effort...

PS. Auditory Neuropathy Listserve

Description
The intent of this listserve is to provide information and emotional support to parent's of children diagnosed with Auditory Neuropathy and/or Auditory Dys-synchrony. We will share our experiences, problems, successes and failures, as well as, strategies used in dealing with a child that "Is not deaf....but can't hear". Parent's often feel more isolated than the parent's of a 'typical' deaf child. This is a relatively new area of audiology where many professionals disagree on management of the condition. Many of us have received conflicting advice concerning our children's diagnosis and it's management.
Professionals that deal with children diagnosed with auditory neuropathyand/or Auditory Dys-synchrony as well as, adults with the diagnosis are also welcome to join.

Auditory Neuropathy is characterized by a pure tone loss (most cases) with poor speech discrimination in relation to the pure tone audiogram, absent or abnormal Auditory Brainstem Responses (ABR) and normal cochlear outer hair cell function when otoacoustic emissions (OAE's) are tested. Many audiologist's are simply unfamiliar with the issue's faced in parenting an Auditory Neuropathy child. Resources dealing with this problem that are written in layman's terms are limited. As parent's, we must learn all we can about the disorder so that we can become advocates for what these children need to obtain language.

We have chosen varied methodologies and/or strategies to educate our children. These choices were difficult and were made based on what we, as parent's, felt was best for the family and the child. We CAN discuss our personal experiences with a methodology, in relation to how successful it has been for our children with Auditory Neuropathy. PLEASE SHOW RESPECT TO THE CHOICES OF OTHER FAMILIES.

*****Debating methodologies is NOT appropriate on this list.*****

Ups and Downs

One of those particular moments in my life that I'm trying to get through with my head on straight and my feet on the ground. There's nothing like your kids to help you keep your feet on the ground. Lol, yesterday Jordan slept at a friend's house and Sofia was playing outside in the court with the neighborhood kids...it was about 10:30 pm. Suddenly, I heard Sofia screaming, so I ran outside to see what was happening. She was wet. The four other girls on the street were wet, and Isaaco - Crazy Isaaco- was packing a three foot long water missle gun and smiling. Now, we can't have that, now can we. So, I broke out the garden hose, turned that bad boy on full force and attacked.
Poor Isaaco never knew what hit him and of course the girls started cheering. I destroyed him. Don't think I take pleasure from destroying an 11 year old boy, but we can't have an uneven war, at least not in front of my door. Isaaco, like the champ he is, came back at me from the hole in his bushes and yes, he soaked me. But I had the most fun I've had in a while, aside from Cernobbio, of course. And Sofia...she laughed at me the rest of the night.

Moms do stupid stuff all the time just to make their kids smile and create memories. That is one night Sofia and I will never forget...neither will Isaaco. *smile*

Ups and downs, ups and downs. Just when you see a perfect life lining up before your eyes, a tornado arrives and devastates everything...if you let it. I've had a couple of tornado dreams, I've always been terrified of tornadoes, but in these dreams the tornado had a face. I looked the tornado directly in the eyes and was not afraid. Strange. Life threw me Jordan's situation and I reacted aggressively. Life has now introduced a new very difficult situation, and I will react with my feet planted firmly on the ground. I am so not a passive person.

I will say this...after what I've been through with Jordan, I can handle anything as long as the health of my kids or loved ones is not an issue. And just like I did with Jordan, I will handle it with a lot, a lot of love...and not anger. (Although I think I'm allowed to be frustrated.) I know I'm probably making no sense...but this blog's for me. *smile*

NHS 2008 - My Speech

Here's my speech! I will say this - at a certain point, I started shaking, like a physiological reaction or something. I began fairly calmly and suddenly, I got the shakes. Luckily, I started the powerpoint presentation at that moment, so I managed to pull it back together, but it got a little sticky there for a minute. I don't know that I followed it word for word, but the jist was this:

INTRO:
Good Morning. My name is Jodi Cutler Del Dottore. I am an American Mom living in Tuscany. My 11 year old son Jordan was born profoundly deaf, wore hearing aids for eight years and three years ago was implanted in Pisa by Prof. Stefano Berrettini with Cochlear’s Nucleus 24. His first processor was an Esprit 3G, and he currently wears a Freedom. All of our expenses have been covered by the Italian National Healthcare Service.

The cochlear implant changed our lives. From the moment of activation, Jordan flew, grew and found his voice. Because he found his voice, I was able to raise mine regarding our experience. My father and I wrote the book RALLY CAPS, and incorporated a strong deaf character with a cochlear implant just like my son, because every child has the right to find himself in literature. RALLY CAPS has been endorsed by Cal Ripken Jr., Brooks Robinson, and Curtis Pride, the only Deaf Major League Baseball baseball player. It was published in the United States and has just recently been published in Italy. At the book presentation two weeks ago, I invited the Medical Professionals involved in helping our child, each and every one of them not only attended the presentation, but they spoke.

The following is the dedication in the Italian Version of Rally Caps to all of the medical professionals and teachers who have assisted us in raising Jordan’s voice:
Placing your child in the hands of other people and having to trust these people with your child is the most difficult thing for a mother. When life requires that you ask for the help and support of persons outside of the family, you suddenly find yourself in an extremely vulnerable position. Finding professionals willing to offer all of their efforts and competencies, who moreover demonstrate the ability to love your child in such a way as to contribute to his growth is…extremely rare.

*Slideshow*

I travelled ten hours, changed trains four times and sweated my way to a hole in the wall of a hotel room with a bathroom in the hall to provide you with this message: There is NO greater ally in making your job a success than the Mother of the Deaf Child you are assisting. I am here today, based on my experience here in Italy, to provide you with a Mother’s perspective.

PEDIATRICIANS:
Jordan was born in Baltimore and was extremely alert and obviously intelligent. There was no newborn hearing screening program at that time. Because Jordan was so intelligent, we questioned our pediatrician numerous times regarding his lack of language expression, he wasn’t babbling at all. Each and every time, my pediatrician called me neurotic… Motherly piece of advice number 1: LISTEN TO A MOTHER’S OPINION, THERE IS NO ONE WHO KNOWS HER CHILD BETTER.

As an American Mom thrilled to be living in Tuscany, I jumped off the airplane with ten month old Jordan slung over my shoulder ready to dive into some Chianti and pecorino cheese. One month after we settled into our new small town Grosseto lifestyle, we took Jordan for his first check up with our new paediatrician. Dr. Giovanni Lenzi performed a standard Boel test which involved distracting Jordan with one hand and ringing bells with the other- to which Jordan had no reaction. We were sent to Florence where they performed an ABR that indicated Jordan’s profound bilateral sensory-neural hearing loss. However, try to imagine the scene in that office...

AUDIOLOGISTS
When this audiologist came to speak at my book presentation a week ago, she commented on how different I was compared to that first day that I met her. I was a 25 year old American Mamma wearing cut-off jeans shorts, very broken in tennis shoes who didn’t speak a lick of Italian. What I didn’t tell her, because the most important thing in our relationship was the fact that she loved Jordan, was how angry she made me the day she gave me that news of my son’s deafness. She looked right through me…and spoke to my mother in law. And when I intervened by means of my husband and said, you need to talk to me, I AM THE MOTHER, she began calling me “dear.”

Motherly words of wisdom number 2: When you give a parent news of their child’s hearing loss, look them directly in the eye and never look at them with pity. If that mother is Hispanic or deaf, make arrangements for an interpreter to be present because the news you give that mother will change the rest of her life.

SPEECH AND LANGUAGE PATHOLOGISTS
Armed and dangerous with hearing aids, next stop Auditory-Verbal Therapy four times a week. Advice Point 4: This one’s for the Speech and language Pathologists, and Auditory-Verbal Therapists: Encourage that Mom who now assumes a new role as Mom/Teacher, focus on the positive progress made.
Imagine your typical playground scene, it is natural for a mother to teach her son right from wrong, how not to climb up the sliding board or not to push the child in front of him...it is not natural to have to shove language down your son’s throat "Oh, look, there's a toy train, can you say Toot Toot? Oh, look that little girl has a toy car, Brrrrrooom, brrrrooom!" This dual role of teacher/mother blew me away, I am a teacher, but I have Never had a student as stubborn as my son. My speech therapist explained that my son’s temper tantrums were due to his frustrations regarding his inadequacy in expressing himself, he threw a lot of temper tantrums, so he must have been extremely frustrated.

It was my son’s frustration and the fact that he was falling behind socially that led us to choose the cochlear implant.

COCHLEAR IMPLANT TEAM
After a couple of opinions and research we found Santa Chiara Hospital in Pisa where Dr. Francesca Forli answered every single one of my fifty questions calmly, objectively and sincerely. I had found my implant team. Prof. Stefano Berrettini performed the Implant Surgery leaving Jordan’s residual hearing intact. He provided me with his personal cell phone in case of emergency and called a couple of times to check on Jordan’s progress, note Jordan’s operation was the day before Christmas. I am not asking you to give up your personal lives for your patients, however it might be a sort of a human touch to delegate a phone call to a member of the implant team to find out how that child is doing…and how that mom is doing. A calm mother means a calm child.
Motherly request number 5: Go above and beyond the call of duty every now and then, it goes a long way in establishing a collaborative effort with the mother of that child, which will only make your work more successful.

The cochlear implant enabled my son to become independent. Our journey has not been easy, but it has been extremely rewarding.

SUPPORT NETWORK
After spending ten years without support, I found the Pediatric Cochlear Implant Circle a community of over one thousand parents at various stages of the cochlear implant journey. Some parents use ASL as a bridge or in conjunction with spoken English...other parents strictly use the Auditory-Verbal approach. We exchange information regarding the latest technology and offer psychological support having been there and done that. I then joined the blogging community, which has led to a productive dialogue with the Deaf Community. Hearing mothers of Deaf babies with CIs are making a difference in opening minds within the Deaf Community.
Mom’s Final Request: Provide that Mother with resources to help her through the lifelong journey with her deaf child.

I would like to share a little poem by Shel Silverstein entitled
Listen to the Mustn’ts

Listen to the Mustn’ts, child,
Listen to the DON’TS
Listen to the SHOULDN’TS
The IMPOSSIBLES, the WON’TS
Listen to the NEVER HAVES
Then listen close to me-
Anything can happen, child,
ANYTHING can be.

We are an example that Anything is possible. Empower that mother by validating her concerns, looking her directly in the eyes when you speak to her and providing her with resources that offer support and guidance... and you will save that child.

Hotel Nightmare...Magical Four Days

Okay, I haven't seen my kids in four days, so while I have a lot to write about, it just has to wait until they go to sleep...which was late tonight because Italy was playing Spain and lost in World Cup Soccer. I am in Italy and there are priorities.
I have so much to write about, I have to post my speech (I have no video or pix for international reasons and the fact that I forgot my camera and my deodorant - I immediately hit the pharmacy for some deodorant and took some photos on my cell phone, but I can't seem to send them by internet, nor do I have the energy)
*Btw...I think everyone on the four trains I took forgot their deodorant, too, but didn't bother to visit the pharmacy to buy a new one:(*

Okay, I laughed my ass off for four days. You need to understand my accomodations. I arrived at my hotel (if you can call it that)at 5:45 pm and had to make a 6:30 pm. cocktail hour. Things started off great, when I walked in the "hotel" they handed me a really cold glass of white wine and started chit chatting about Baltimore and Frank Zappa. They had me on the third floor, you can't even imagine how heavy my luggage was between books and clothes. Note: the guy working in the hotel not only didn't have any deodorant on when he took my bags upstairs, but by the time he got up the three flights, he was sweating and really stinking profusely as he made his way back down.

There was a sink in my room, a queen sized bed, a table and a wardrobe. I stripped, threw on my robe and flip flops and headed for the bathroom. There was a hole in the floor that was the drain, a toilet, a sink and a "shower" which was a pole connected to a wall with a shower head dangling from it. I swear, I had to hold the shower head in one hand, soap myself with the other, while trying not to get my towel or robe soaking wet in the strategic position I placed them so that they did not touch anything funky. Note: there was a dried up contact lens in the sink. Somehow, I managed to take a shower - I'm super-coordinated like that. I got dressed really fast and raced downstairs to the hotel dude.

I said, "One mighty fine shithole of a hotel you have here." And I was laughing, I have no problem roughing it. He dug me, because he said, "Well, I do have one room with a shower in it, if you want it, it will cost you a little more." No need to think twice here...poor guy, he ran up the steps, sweating, sweating, sweating and carried my bags down two flights of stairs to room number 3 - my lucky number. He swung open the door and there it was...the smallest shower in a plastic box I have ever seen, but it was ALL MINE! Next to the shower was, yes, a sink, no toilet, all of it wide open, yet, it was ALL mine. And...there was a mini balcony in this room!!!!!! I STRUCK GOLD!!!!

The hotel man sllllllllliiiiiiiiiid out of the door and left a couple of drops of sweat on the floor on his way out. I whipped out Jordan's Pokemon sheets and a Scooby Doo pillowcase that I threw on top of the sheets and pillow and was on my way!

When I walked into the cocktail hour, I saw Professor Ferdinando Grandori (who now will be called Ferdi)and introduced myself. He looked kind of surprised (later he told me he was expecting a short, fat American Mom *surprise*)and proceeded to introduce me to Scientist this and Doctor that, who really didn't look too impressed by me, but were very cordial all the same. By the end of the Conference, we were all buddies.

Cernobbio (Lake Como)was one of the most beautiful places I have ever been, a lake surrounded by mountains and small towns dotting the mountains. I had two glasses of white wine at the prestigious Villa D'Este overlooking Lake Como,
dined in a restaurant hovering over Lake Como near George Clooney's Villa (who needed George?), walked the lawns of Villa Erba and noticed a patch of bamboo trees, participated in a Gala Dinner held outdoors on a beautiful evening where we watched the sun set behind the mountains surrounding the lake. I even watched an egg-shaped moon rise from the mountains announcing the beginning of summer. Every single morning I left my "hotel" with a smile on my face and a feeling of peace that I haven't felt in such a long time. (The morning I had to give my speech I was listening to my iPod and crossed what I thought was a one way street, that ended up being a two way street and I was literally five meters from getting knocked off by an oncoming car...I laughed the whole way to the Conference center)The walk from my hotel to Villa Erba changed every day as I got lost in the alleys and cobblestone streets only to find a different church on every street...or maybe it was the same church and my head was so in la la land that it looked different every time.

In any case, the place was simply magical as was the company...magical and stimulating - four utterly unforgettable days.

RE: The Time is NOW!!!!!

I just got home and found all of your comments. I have a little story to tell about WHY I posted this video *smile* As you either know or don't know, I just gave a speech at the NHS 2008 Conference in Cernobbio (Lake Como) Italy. I have about five different posts to post about this conference because UNBELIEVABLE things happened, I mean out of control amazing things happened.

One of the MOST incredible moments was when I met LeAnn and Janet, who were present at the convention!!!!!!!! Now those are some POWER ladies. Janet and LeAnn found me and told me that they had been to three other NHSs and never once had a parent spoken at the conference...(Thanks to Ferdi, live for you) They said my speech was "inspirational" *smile, smile* and we became instant friends.

NOW, LeAnn invited me to a summit under a tree on some really wet grass. The "summit" was a joint committe, really loose committee of some powerful and committed parent support awareness organizations from Australia, the UK and the good old USofA, me being the Italian Ambassador of Goodwill, lol.

We discussed creating a parent support component to be added to NHS 2010 and began brainstorming. One gentleman threw out a hundred thousand dollars to be used towards planning this event. *gasp* We discussed how all of the lead professionals in the Audiological field including surgeons, scientists, speech therapists, pediatricians were at this Conference, so the TIME IS NOW to take action in creating a proposal for the 2010 Conference. I jumped up and asked Ferdi, the "main international man" to join us and give us his opinion - he gave us some key ideas to try to make it work, told us he would consider it and asked us to have a proposal by September.

Freaking unbelievable. So the summit group starts getting excited because we are certain that now is the right time to begin advocating for better parent support services in conjunction with Newborn Hearing Screening to reduce the number of cases lost in the system. LeAnn jumps up and starts telling me about the video THE TIME IS NOW that she created and we go to the five minute limit internet point where she shows me her video. I say, "Hey, LeAnn, it's on You Tube, can I blog it?" She says, "Of course!" I spent literally five minutes as I was sitting next to Karl White blogging the video that really hit me. I assumed that the Deaf Community wouldn't need captions because the same sentence is said and signed over and over again in DIFFERENT sign languages worldwide. THAT was what was so touching to me as LeAnn explained the video. There we were at an international conference, I found the people for whom I'd written an article, we found ourselves under a tree discussing a "what if" that suddenly is becoming a reality.

There's the incredible story, but the most unbelievable part is that when I saw LeAnn and Janet this morning, LeAnn had received a phone call in Italy saying that "Someone had 'STOLEN' the video from Youtube." lololololol...

Just wait for my next posts about the NHS 2008, I am telling you, never in my life would I ever have expected to have been able to contribute as much as I did, thanks also to Ferdi and of course...my big mouth.
And to think they didn't want me to talk *smile*
PS. I never left Deafread.com, I've just been away from my computer.

The Time is Now

Having the time of my life...for now, enjoy this one!

*Despite the fact that this video was posted with permission, it was done so "in the heat of passion." Because Hands and Voices is exactly that...it would be inappropriate to leave the video here without captions. Therefore, the video has been removed by request...and here, I honor requests. Thank you for your understanding*

NHS 2008 and CI Kids

NHS 2008...Here I come! Packing, packing, practicing my speech and packing. I'm lugging fifty books in two different languages, three pairs of shoes, and two outfits for each of the three days I'll be there. Of course two changes of clothes really means four a day, because a woman must have the option to choose. Ten hours on the train should be enough time to memorize my speech, which by the way the organizer who is my new best friend, told me is touching and inspirational. (After I had to cut about three pages...got a little bit long-winded)*smile* I have already been invited to the VIP cocktail hour tomorrow night, I'm telling you I love this gentleman. After a ten hour train ride, I will be ready for some serious sipping.

I've broken the speech into sections regarding experiences lived with our Pediatrician, Audiologist, Speech Therapist and Cochlear Implant Team. My favorite part is explaining how to understand Deafness, but I'll post the entire speech when I get back.

You know, just like Val wrote about in her Maw Maw post, I never prayed to God to cure Jordan's deafness, I only always prayed for the strength to be a good mom. However, only one month after Jordan's ci activation, when he began understanding more than two sentences put together, I remember praying for the chance to thank all of the doctors who helped my son reach the point he is today. I mean I really prayed hard. When the Italian National magazine CHI contacted me and RAI 1 the Italian National TV did the same, I was so grateful for the opportunity to thank all of these people. Doctors don't even realize the power they have, not only in regard to their ability to diagnose an illness or perform a successful surgery; it's the human side they add to the equation that truly renders their job a success. We have always been fortunate to have found sensitive Medical Professionals. Maybe they have been sensitive and gone that extra little bit, because we have always said "thank you," but that little extra bit is what changes everything.

Anyway, the prayer for the opportunity to thank these professionals has kind of exploded and turned into a desire to try to make a difference in some small way. For some reason, people close to me don't understand this need of mine. They think I am consumed with the "success" of the book. The "success" of the book, which was really only written to give something back to my dad for having been such a good father, is that it led me to the support groups and creating this blog, which as I've said a million times is a healing experience for me.

The true "success" of RALLY CAPS will be if my speech on Thursday morning has a positive impact on some of these Medical Professionals who treat our kids. If that occurs, then, yes...RALLY CAPS will have truly become an enormous success.
Hey Rachel and Elizabeth, not only will I be bringing the Pediatric CiCircle Brochure, but I will place a copy of Ellie's Ears right next to me at all times! And, your blog is part of my power point presentation. *smile*
Cross your fingers!
I'll report back on Sunday...I'm outta here!

Go Christian!!!

Dear Dad...

Okay Dad, you're going to have to read between the lines for this Happy Dadio Day post, because it isn't going to be the usual poem.

Today, I did something that I have never done in my entire life...I cut the grass of my 2 by 4 little yard, if you can call it that. I remember being so annoyed every Sunday morning, the one day I could sleep late, and I could have slept until noon, had I not been awakened every Sunday morning by all of the Dads on Nemo Road mowing their lawns.

BRRRRRRRRRRRRRRRRRRRRRMMMMMMMMMMMM, every single Sunday morning, I had no peace. But, when I banged open and slammed that screen door shut to go outside to play wiffleball, I saw shining green lawns everywhere, Happy Fathers using their tools to hedge off the finishing touches and there was this AMAZING smell of fresh cut grass breezing down Nemo Road. There must have been some unwritten law stating that a Mother could never come between a Father and his yardwork.

Today, I broke that law. Because, Dad, if there is one thing that haunts my head it's that you always complain when a lawn isn't neat and in order. That untidy yard ruins a neighborhood- when everyone else's lawn is in order, a messy lawn is just a really bad reflection of that homeowner.

Yes, home is where the heart is, but that lawn might as well be considered the eyes of that homeowner, and we can't have sad-looking eyes. So, today, I mowed the lawn...and I did it in 35 minutes flat, wearing a black tank top with a black lacy bra showing through and my french manicured nails clicking all the way up and down that 2 by 4 patch of unruly grass. The good news is that I didn't break a nail, the bad news is that I got a huge cut on my arm from a damn sticker bush. I sweated like a beast, because the sun was finally shining...I'm sneezing like crazy, because all that grass provoked my allergies...and I'm sitting back here reflecting on what is an extremely bittersweet moment in my life.

I'd just like to add that I also used a tool for the first time ever, those sharp grass-cutting scissors to snip those difficult to reach spots. My neighbors I think were in total shock at the sight...let them look. You can take the American out of America, but you CAN NEVER take America out of that American. (pause to consider that one...)

Happy Father's Day, Dadio...gotta go get a Hello Kitty band-aid for that scratch on my arm.

Love,
Jadoo

PS. There will be an announcement at the baseball stadium today before the game about RALLY CAPS. Jordan will be "throwing out the first pitch"...thanks for giving him the opportunity to live these incredible moments.
PSS. Sorry, can't give you what you asked for for Father's Day, hopefully next year.

Empower the Mothers

This has been a period of ups and downs. Because I am an optimistic person by nature, I have pulled myself out of the downs in such a way that I am stronger and more able to face the next "down" when it comes. I have no time to breathe, but I am not suffocating. I had to let the blog go the past couple of days, because I needed to prepare my speech for the NHS 2008 Conference that begins on Thursday.

I am going alone. Somehow, I know that THAT is the way it is supposed to be. I booked my train ticket today - I'll be travelling eight hours, changing trains four times (throw in a bus ride, too) and staying in a hole of a hotel room with a twin bed and a bathroom in the hall. I have always been the adventurous type. *grin* (not *smile* - *grin* there's a subtle difference there)

Why bother?

*600 medical professionals*

If twenty of those 600 listen to my message of EMPOWERING the MOTHERS, and those twenty treat 100 patients each, making that extra effort to listen to, trust and provide important resources to those mothers, then I will have helped 2000 children in a small way. I'm really hoping to reach at least twenty of those professionals.

I'm going for pants, but I'm thinking sandals with RED nailpolish. One mother on the Circle told me not to wear a shirt with prints...I have never worn a print in my life - I'm all about SOLID.

While writing my speech, I was sitting in a cafe alone, listening to "Winning Women" (Rhianna)on my iPod. I felt damned motivated.

Forty minutes ago, I finally figured out how to create a slideshow using Power Point...alone.

Tonight, after the kidlings go to bed, I will stand in front of the mirror and spend some quality time with Me, Myself and I practicing this speech, because I need to really, really make it a good one.

Despite my ups and downs, I have NEVER felt STRONGER than I do right now. After all of the shit I have been through, and what I am going through now, I am learning to EMPOWER myself.

Girlee Stuff

Yesterday I went to see Sex and the City alone. I tend to laugh a lot at the American humor that the Italians just don't understand, so aside from the fact that I wanted to go alone, I figured I'd save a couple of friends some embarrassment. The last time I went to see a movie alone was in 1994 Reality Bites. During the part where SJP is trying on the 80's dresses that the other girls were rating as "Toss" or "Take", I was the only one laughing because "Toss" was not translated in Italian. There were only about six of us in the theatre, so I potentially could have made an announcement explaining the scene, but I preferred to laugh alone.

Strangely enough, I received two adorable emails that I tried to send to friends, but they sent me back the message that the pix didn't post. So...here they are, enjoy!

BTW, speaking of sex, I stumbled upon Jordan's secret stash, he ain't only about Mickey Mouse comics anymore...

It was a small town and the patrolman was making his evening rounds.
As he was checking a used car lot, he came upon two little old ladies sitting in a used car.
He stopped and asked them why they were sitting there in the car. Were they trying to steal it?
"Heavens no, we bought it."
"Then why don't you drive it away."
We can't drive."
Then why did you buy it?"
"We were told that if we bought a Used car here we'd get screwed ...so we're just waiting.


IF WOMEN CONTROLLED THE WORLD (We do:))

 

 

 

 

 

 

 

 

 

Gotta go wash some clothes!

Forget about "Balls"...It's Definitely PMS

There is more drama going on here than at one of my sister's Dyke Tea hours at the Hippo in downtown Baltimore. I would like to make one thing clear so that I am not accused of "hiding" information. Cochlear Italia, as I have already said, was so enthusiastic about RALLY CAPS that they paid for the translation and purchased 416 copies of the book (we obviously waived our royalties for those books) to be distributed in hospitals throughout Italy. They requested that I include their contact information as well as other relevant material on the back cover of the Italian edition. I now consider RALLY CAPS a valuable resource for who may be interested in a Cochlear Implant here in Italy where information is extremely scarce in the South, as confirmed by my former speech therapist this evening over a nutella milkshake.

I welcome the opportunity to advocate. I wear Rachel's CI awareness designs, Eva's cochlear necklace and spread the word every chance I get about Cochlear's Freedom, because it has changed our lives. I have never been given an Euro by Cochlear Italia, but we obviously have some sort of relationship forming, that I hope grows into a real love story.

Why is my situation different than Rachel's?

Taylor wrote:
...The blogger(s) may benefit in other ways, such as receiving a free trip, receiving a discount on the company’s product/service, or obtaining a scholarship.
Why should a "scholarship" be grounds for excommunication?

Some things just don't make sense to me. Maybe because it's 12:32 am, and I'm tired as hell. You know, I told a friend of mine I was thinking of becoming a lesbian, but I've since changed my mind - I couldn't handle being on the rag With my partner. I think I had the "balls" thing all wrong, maybe it's just that time of the month on deafread.com.

It Takes a Village: Meet Chief Rachel

 

Rachel Chaikof flashed first...boils down to that. And, as we all know I am a huge fan of every single member of the Deaf Village Staff (Paotie's name is HOT and rather manly) I never cease to be amazed by the strength of friendships created by means of internet, even big MAC came out of retirement to support Rachel. Elizabeth
got bitchy and aggressive, which I must say I was not expecting (Her photo just doesn't scream "bitchy" to me).
Elizabeth wrote:
And, let me let you in on a little secret, Deaf Militants: I am your worst enemy. I am a hearing person, but I sign fluent ASL. Yet, after learning ASL and participating extensively in Deaf Culture events, I have decided that it is NOT the way I would choose to pursue education for deaf and hard of hearing children. WHAT?!? Shocking, I know. Given the extent to which some Deafhood followers glorify ASL, you’d be tempted to think it contained some talisman-like powers. Hate to break it to you, folks, it’s just a language. No better and no worse than any other. So… vlog away all you want in ASL without subtitles (clearly violating the decency you’d angrily demand from any hearing person who posted video without captions)… I’m listening!

Somehow, this wrongful misdoing of throwing Rachel off of Deafread.com brought about positive change, so I think I would actually like to THANK the editors. I went to bed with a smile on my face last night because a 21 year old deaf WOMAN gave birth to a new website that is guaranteed to help many parents and deaf individuals. Rachel...sometimes action speaks a lot louder than words.

About
Deaf Village Staff:

Rachel Chaikof– Lead Developer
Aaron Rose – Public Relations
Moderators:
Joshua Dawson AKA “Paotie”
Elizabeth Boschini
Mike McConnell
Val Blakely

Jordan's "Best Day Ever": RALLY CAPS ITALIAN PRESENTATION

 

I was really trying to be a good Mamma by vacuuming my house, but the vacuum cleaner literally just exploded...I am NOT meant to clean my house (which now smells like burnt vacuum cleaner).

 

Sofia after spending the morning outside screaming, I mean as if her hand got slammed in a car door, because every now and then she sees a spider the size of a quarter of a baby tooth just said the funniest thing: "Mommy, what is English?"
"Sofia, English is what Mommy speaks to you, it's a language. We speak Italian, English and Jordan is learning to speak French." I replied.
Sofia asked, "Like Japanese?"
Shocked at my intelligent 5 year old, I suddenly understood and said, "Right, like the Japanese you see on Naruto or Dragon Balls."
Sofia smiled and said, "Yes, Mommy, I speak English, Italian, Japanese and Fairy Tales."
"Yes, Sofia, that's correct."
*smile*

Okay.

 

Yesterday was the presentation of the Italian Version of RALLY CAPS. Twelve people spoke including the Adminstrative Representative of Cochlear Italy, our pediatrician, our child psychiatrist, our first audiologist, our speech therapist and another one of our speech therapists travelled 8 hours to be present as well, our current audiologist responsible for mapping the ci, the vice-mayor of Grosseto, a representative of the Medical Association who endorsed the book, the President of our Parent Association for Families of Deaf Children, Jordan's friend the famous Martina and Jordan.

There were over 120 people in the hall, every seat was filled and people were forced to stand:). I had invited the ENS, Ente Nazionale dei Sordomuti (Deaf individuals who communicate using LIS). After sending a letter to their President requesting their presence and an interpreter, the president contacted me accepting the invitation. There were about ten people present from the Association, and I was VERY excited about this.

I was a strung-out nervous wreck. There was media coverage, tv, newspaper, etc. I was so nervous when the TV guy interviewed me that I think I made him nervous. Okay, speaking before 130 in a language that is not your own, is kind of scary. I must have sounded half-decent because one of my student's moms just texted me: "I saw you on TV and in listening to you speak, one can truly understand exactly just what a mother is capable of doing for her child. Long live women!" THAT was a hot message.

However, this day was not about me, it was about Jordan. Every single person who spoke, spoke to Jordan. He began the presentation by playing "Old McDonald Had a Farm" on his guitar accompanied by Martina, who is just amazing. When she spoke about Jordan there wasn't a dry eye in the house.

 

After one hour and a half of speeches, Jordan read his letter. He read it clearly and sincerely. After the letter, he decided he wanted to speak to the public. Spontaneously. He said, "I would like to thank everyone for being here with me today. Now, I feel good. I play baseball, I play the guitar, I hang out with my friends, I do anything I want. Before, when I wore hearing aids, I wasn't so good. I was frustrated and life was difficult. Then, I got the cochlear implant and my life changed. Now, I feel good. Thank you again for coming."

I am a nervous mess and my son is a natural. Calm, cool and smooth. Jordan signed books for about an hour, after all he is a published 11 year old. After the book presentation, Luca, Jordan and I went out for pizza. Later that evening we went to an end of the school-year party and on our way home, he said, "Thanks, Mom, this was the Best Day Ever!" (Note: It was also his last day of school:))

PSPSPSPSPSPSPSPSPSPSPSPSPSPSPSPS...*SMILE*

 

More on the Rachel Situation and Balls

I'm still so pissed off I can barely make my fingers click the damn keyboard. SEE ABBIE'S Blog, she said everything I would like to say and more. So, now, I'd like to discuss balls...big, hairy fat ones. I have discussed the concept in my blog in reference to my driving maternal desire for my own son to grow himself a fine set.

Rachel has a strong voice, but she is still that little girl born deaf who has had to fight since she was a baby. Doors open and then they slam shut, they open and they slam shut. She got a CI, it failed, she got another CI. She just got stronger and out popped a ball.

If after years and years of raising my son's voice someone shut it down because he was a volunteer to help others raise their voices, I would be Really pissed off. I cannot even imagine what Melissa is thinking right now, but I would be a bit concerned if I were the deafread.com editors. Ain't nothin' like the wrath of a Mother whose child has been scorned.

In Rachel's Post discussing the Advanced Bionics Recall, she wrote:

I’m amazed by how certain people in the deaf community love to nitpick, make possible CI risks a major deal and look at them as a half empty glass while the risks are usually avoidable, fixable, and improvable, and companies, surgeons and audiologists who are committed, and committed parents are willing to take every step necessary to protect the health and well being of CI users. Advanced Bionics voluntarily recalled their devices by sending out letters to all the AB users and was willing to foot the bill out of their pocket for reimplantation. This demonstrates how AB was open about their failure.

Ooooh, sure DOESN'T look like she's biased in favor of Cochlear and I am Sure Cochlear America did not pay her to support Advanced Bionics.

Admitting you made an error takes balls, I'm really hoping that deafread.com editors flash us.

Deafread.com Silences a Strong Deaf Voice- My Response

IF THERE IS ONE THING I CANNOT STAND IT IS HYPOCRISY. A STRONG, OUTSPOKEN YOUNG DEAF WOMAN WITH SO MUCH TO TEACH, WHO IS WILLING TO LISTEN TO THE DEAF COMMUNITY HAS JUST BEEN...SILENCED BY DEAFREAD.COM. RACHEL'S BLOG STIMULATES DIALOGUE, ENCOURAGES REFLECTION OF DIVERSE PERSPECTIVES, ASSERTS A CHOICE IN DEAFNESS WITH A PASSION AND EDUCATES NOT ONLY A GROWING POPULATION OF CI WEARERS, BUT A LIBERAL, OPEN-MINDED SEGMENT OF THE DEAF COMMUNITY WILLING TO LISTEN TO A NEW SURGE OF DEAF INDIVIDUALS SCREAMING FOR THEIR RIGHT TO BE RECOGNIZED AS PART OF THE DEAF COMMUNITY DESPITE WEARING A CI.

*BTW, I AM SCREAMING*

ARE YOU LISTENING, REALLY LISTENING TO WHAT HAS JUST HAPPENED? CONSIDER THE CONSEQUENCES AND HOW MANY PEOPLE WILL NOT HAVE ACCESS TO THE INFORMATIVE BLOGS RACHEL AND ELIZABETH POST...

ALTHOUGH, MAYBE THAT'S THE POINT.

Rachel Booted Off Deafread.com: Her Response

Tonight, at 12:26 AM EST, I received an e-mail from DeafRead editors saying that Cochlear Implant Online can no longer be on DeafRead simply because I am a Cochlear Awareness Network volunteer member, and they think that my website is a COMMERCIAL website. They clearly stated in their e-mail that I am “employed as a volunteer” which makes absolutely NO sense! They stated that I am violating this policy:

6) Commerical Sites
We do not link to commerical sites for the purpose of generating
profit, other than our own (we have expenses to cover!).

My website is absolutely not a website for profit nor a commercial website, and it has no affiliation with Cochlear. Cochlear absolutely does NOT direct me how to create nor maintain my website nor give me any money to maintain my website. Cochlear Awareness Network is an organization that is no different from DBC and NAD. I’m just simply a VOLUNTEER member of the ORGANIZATION, not an employee for a business.

This rule absolutely and clearly does NOT justify the excuse to remove my site from DeafRead because, as I said, my website is NOT a commercial website. I am paying out of MY OWN pocket and MY VOLUNTEER time to maintain my website, and I do not make a single penny on this website. I’m just simply creating awareness of CIs like other bloggers who are creating awareness about ASL.

They CLEARLY chose to send me this e-mail to try to create an excuse to remove my site from DeafRead. There are quite a few other bloggers on DeafRead who are Cochlear Awareness Network volunteer members and Bionic Ear Association (Advanced Bionics) members. In fact, there is a blogger who is clearly affiliated with Cochlear Italy and is promoting his/her own book. AND…there is a blogger who is clearly affiliated with Sprint Relay.

It is absolutely DeafRead’s greatest loss as they’re choosing not to help create and promote the diversity of the deaf community that is happening today in the 21st century AND not to accept and to discriminate against CI users who were raised with AVT and are living a life that is just as fulfilling and happy as any other deaf people who were raised with ASL or whatever. In fact, they are choosing to SHRINK the deaf community by choosing to exclude deaf people like me. AND…they’re choosing not to teach people like me about the deaf culture and ASL.

DeafRead chose to pick on ME because I am DeafRead’s worst enemy simply because they hate the fact that I am a successful CI user without any use of ASL. They are simply envious of me… And they’re afraid of “my destroying the deaf community” which I am not at all. I’m just simply creating an awareness of a whole another different group of happy deaf people.

DeafRead is simply a piece of sh&%! I’ll still continue to blog anyway and celebrate the happiness of hearing and speaking whether CI Online is on DeafRead or not…

In fact, parents of newly diagnosed deaf babies can still EASILY find my website…

So, since CI Online is no longer on DeafRead, I would bookmark this website!

Nervous Breakdown

Hmm. My post just posted without having been written. Damn nails. I must have clicked a button, have no idea which one, and off it went into blogland without a word written. Tonight, I'm in a rambling mood, chillin' and listening to Gianna Nannini. Love Gianna Nannini, loved her voice before I even understood a word she was singing. Do you realize that Italians listen to American music and have no idea what the lyrics mean? That's sad. Actually, in this period the lyrics of certain songs have taken on a new meaning, which is probably why I have iPod addiction.

Rough weekend, long weekend. I'm looking forward for the week to begin so I can finish my lessons and finally make it to June 7th, the book presentation. After the kidlings go to sleep I will finally have some time to write a speech and prepare. I am STRESSSSSSSSSED out, but hanging in.

The good news is that I've managed to wash all clothes. The bad news is that a couple of loads came out blue. I'm a hopeless case in the domestic department. That's okay, I like blue.

Yesterday, Sofia Madyson and I had a lunatic Mother, lunatic daughter day. She is just like her Mamma (poor girl). We went to play on this huge blow-up slide, ball pit, random toys complex thing. She was adorable in her little gray dress and busted lip that she got after falling off a table while dancing at a party. (Yeah, five and cube dancing...that's my girrrrrrrrl!) So, it was 12 on a Sunday morning and all the good little housewives of Grosseto were home preparing the big Sunday breakfast, we were playing. Sofia Madyson began sliding and having fun when two kids her age arrived, a boy and a girl. My princess went up to the two kids and tried to play with them. Bitch one and Ass two rejected my curly-haired wild child three times and as Bitch Mamma from Hell was about to get up and kick some five year old butt, Sofia did something extraordinary...

She whipped her little body around and went to play by herself. She earned Queen status in that moment and I was so PROUD of her independent self. (sofia - she just typed her name and says hi)This behavior was kind of shocking to me because Jordan would have attached himself to the two kids and cried had they not included him in their activities. Amazing how two kids can be so different, yet very similar.

Gotta go play Go Fish with my spectacular children.