LISTEN TO THE MUSTN'TS
Listen to the MUSTN'TS, child,
Listen to the DON'TS
Listen to the SHOULDN'TS
The IMPOSSIBLES, the WON'TS
Listen to the NEVER HAVES
Then listen close to me-
Anything can happen, child,
ANYTHING can be.
(Shel Silverstein, Where the Sidewalk Ends)
I have been invited to speak during the Official Welcome Ceremony of the NHS 2008 Conference in Cernobbio, Italy (June 19-21)...before 600 international medical professionals.
*smile*
La vertigine non è paura di cadere...ma voglia di volare. (Jovanotti "Mi Fido di Te")
AND RAISING THEIR VOICES: INSPIRATIONAL EXPERIENCES IN DEAFNESS
Saturday, May 31, 2008
Friday, May 30, 2008
When Listening to the Child Requires Choosing ASL
Posted by a mom on the Pediatric Cochlear Implant Circle:
My daughter is not a stellar oral child. She is 5 and lipreads a few phrases and
speaks with all her signs but it is mostly unintelligible. Our difference is
that our implant team refuses to do a CI unless we completely drop ASL...we
refuse. (I had never heard this before and was kind of surprised.)
My only insight is that all children are different. Some deaf kids are just not able to learn to speak and listen exclusively, no matter how much we want it.
When my daughter was a little older than 2 we had a highly respected TOD come to
our home and work with us for a few weeks. The second time she came, just as she
was leaving she said "Wow, she is all ASL isn't she! You have yourself a
signer....nothing you do can change that!" She had only had her hearing loss for
about 8 months and it was only 60 db and she was aided to 0!!
Turns out the TOD was right. We do speech and she has been improving, but she just doesn't care all that much. She wears her aids and gets great benefit from them, but not with speech. She sings and vocalizes constantly, she even has sound effects when she plays. We will continue our listening and speech therapy, but our emphasis has
shifted. We recognize that our daughter is fine without speech and that being
happy and having real language is the most important thing, and through ASL and the Deaf community, she has those things.
Our daughter is Deaf. She attends a school and church for the Deaf. Her friends
are all Deaf and we now function inside the Deaf community. My daughter's
identity and personality are intrinsically linked to her Deafness and there is
nothing I can do to change this. I know there are many on this list that do not
feel this way, but that is the path that my daughter has lead us on. We have had
to shift some of our goals and dreams....NOT give them up, just change what they
look like. But for us, this has been our journey.
There has been an interesting thread on the Pediatric Cochlear Implant Circle regarding progress made with a CI, and I wanted to share this mother's post. Hers and a couple of other parents reinforced the same fundamental concept with regard to choosing communication methods and parenting a deaf child: Listen to the Whole Child, because a child communicates in many ways on many levels.
Thursday, May 29, 2008
For Hearing Aid or CI Users: Music Links for Your Ipod
This product may not be new to many, but it is the first time I've seen it, so I'm blogging on it for other latecomers like myself. Apparently, Music Links works well with hearing aids and Cochlear Implants and is an alternative to ugly headphones that don't really provide good sound quality. Since Music Links has been working its way through my support groups and the moms are raving about it, because happy iPod teens are happy Moms, I'm posting a couple of reviews.
But first...
Music Link benefits
Stereo sound
T-coil/Telecoil compatible - BTE, ITE and ITC aids
Replaces headphones and ear buds
Replaces conventional neck loop
Louder - Stronger signal than non-powered neck loops
Simple - No batteries to charge or replace
No feedback or distracting background noise
One-year manufacturer warranty
A gentleman named Robert who is a frequent poster to all groups, posted this about Music Links:
Hi folks,
I was given a set of the stereo Music Links long ago for evaluation ( surely
with the hope that I would write a positive report on the product)
I did better than that - I raved about them - and spread the word
accordingly!
Technically speaking, the Music Links (silhouettes) are far superior to any
neckloop for two primary reasons:
a: The proximity to the hearing instrument results in a much stronger
electromagnetic field for the telecoil/s.
b: They provide true stereo, as opposed to binaural mono - the case with all
neckloops. ( No wonder the boys love them! )
For older kids and folks using the phone, with the Music Links plugged into
the headphone jack of an amplified phone, the results are truly amazing!
Nothing beats binaural listening on the phone - say nothing of excluding (or
minimizing) ambient noise.
Music Links are compatible with any hearing instrument equipped with telecoils, For the Harmony,they're built-in, of course. For the Auria, the accessory T-Coil will be required..
The Music Links create no audio - just the magnetic field for the telecoil
in the processor.
Note on the Music Links used with telephones:
Some phones are equipped with a stereo output jack, which is what the Music
Links require.
Some phones, however, use a mono jack. And the makers are not clear at all
on the matter.
Bottom line, if there is no output on one side of the Music Links you likely
have a phone with a mono output jack.
Inexpensive adapters from Radio Shack will cure the problem.
This is a great product that works well, and I can't sat enough good about
it!
BTW, for any Brits of interest, the Music Links, which are a product of
England, are available there from Connevans Limited for Lb. 18.50
Disclaimer: I have no financial interest in any entity related to hearing
loss products.
Just a writer on the topic.
Bob
*Thanks Bob!*
One mom of two teenage iPod obsessed sons with bilateral cis purchased the white version and said that her kids haven't stopped raving about the sound quality.
FYI: If you haven't seen Val's Blog today: DEAF CHILD ELUDES JAIL TIME! GO IMMEDIATELY! THE VIDEO IS HILARIOUS! Okay, I'll give you a hint: Adorable Gage just may have called 911 for the second time...Uh-Oh!
Tuesday, May 27, 2008
Emmy Nominee - Rachel Coleman's Response
Rachel Coleman wrote:
The Emmy's are for television shows. The Oscars are for movies. There are deaf themed shows as well as deaf actors who have been nominated and won these awards.
I agree let's see more mainstream deaf performers and media so that the deaf can be recognized!
You wouldn't believe how hard it was for us to get ASL on public television. Many stations felt there were not enough deaf viewers to warrant a show introducing ASL. Some felt Signing Time is too educational, others felt ASL was too narrow a niche.
The bottom line is hundreds of thousands of children have now seen ASL in their homes on their TV. When they see a child using signs they CAN communicate with them rather than stare and gawk.
I was tired of my deaf child being left out because so few people knew her language.
Emmy nomination or not. We have made a difference in the lives of children. We have helped hearing parents of deaf children see that having a deaf child is not the end of the world. It is the start of a whole new world of experiences.
Countless children are growing up feeling like they have a deaf friend in my daughter Leah, whether they have met her or only seen her on TV.
This IS progress my friends and I am proud to be a part of it.
Ummm.
*YOU GO GIRL!*
The First 16 Months with a Deaf Baby...Christina
Today is Christian's CI Activation Day
(From Christina's Blog four days ago...)
I've been reflecting a lot on these past 16 months with Christian. It's amazing to think that these 16 months with him have gone by so incredibly fast. We have had SO much to deal with, just as new parents. The first couple of months were the hardest. I remember feeling angry at other parents who would complain about their children having food allergies, or nap problems, or their baby wouldn't want to be put down. I remember thinking to myself "God, if that is ALL I had to deal with, I would be forever grateful". I remember wondering how it would be to be a Mommy to a "typically hearing" baby.
I remember being jealous of other friends who didn't spend their weeks traveling from specialist to specialist for their kid. I would think to myself "Why can't life be like that for me?". I would detest hearing about which music class this family goes to, and how many words this little child speaks. I would hear other Moms fret about their child waking up to the sound of the mail being dropped in their mail slot thinking "AT LEAST HE CAN HEAR!". I remember countless nights of falling asleep crying, praying, and asking God "Why Us God, WHY?". I lived under a cloud of doubt and self-pity. I have no doubt in my mind that I definitely was depressed. Above all, I was angry.
And then, I woke-up one day, and literally, I felt brighter.
I realized that Christian would be fine. We would be fine. His laugh became my medicine, and I learned to take each day as a new adventure. And I know that I've said this time and time again, but once I learned to not let his hearing loss define who he is, I also learned to not let it define who I am either. I let go of the anger. And I embraced our life.
Christian has blossomed into such a beautiful and intelligent child. His language skills amaze everyone. He babbles, and has words, and he WANTS TO TALK. He is silly, and sweet, and is all boy. He is smart, he is loving, and he is curious. He is everything that I dreamt of, and prayed for. I wouldn't change a single thing about him, or our life.
So, here we are. Activation Day. I'm happy. I'm content. And I'm eagerly awaiting to see what else is on tap for our family.
Good Luck Tina and Co...This is ONLY the Beginning!
Sunday, May 25, 2008
Hey DEAF Boy! Bullies...Jordan, Rachel and Hearing Moms' Perspectives
"Get ready DEAF-BOY...forget about the curveballs; let's see if you can handle some heat!"..."By the way, don't ever call me DEAF-BOY again." These two sentences from RALLY CAPS, that my son can finally read, had a profound impact on Jordan. While playing a game of Go Fish with Sofia and Jordan, Sofia looked at Jordan and said, "Jordan, I asked if you had a monkey...What are you DEAF!" I swear Jordan almost hit her. He got very, very indignant and said, "Don't say that to me, Sofia."
*Shocked*
When Jordan said, "Hey Mamma, what are you DEAF?" to me for the first time, I thought, we have finally arrived- he is so aware of who he is and that his deafness is such a part of his identity, that it no longer represents a weakness to him. I guess I was wrong. There is a fine line. He can say it, but others can not offend him. I shared this experience with other mothers on the Pediatric Cochlear Implant Circle and received many interesting replies, that I would like to share...(obviously with permission)
Rachel emailed me her response off-group (at 3 am. her time...does the girl ever sleep??):
Hey Jodi!
I just saw your post on CICircle about Jordan getting upset over
being called, "deaf." As a person who is deaf and who hears with a CI
like Jordan, I would be offended if someone called me deaf in a
"teasing" scenario, and so, I can completely understand how Jordan
feels. While deafness is part of my life, it doesn't define who I
am. I'm just a person who happens to be deaf and who hears with CIs and
from reading your post, I think that's how Jordan wants to view
himself. Because Jordan grew up in the hearing world, hears and
speaks, I think it's hard for him to view himself as a deaf person as
a whole. As you know, I can't see myself as a deaf person as my
entire identity. To me, when someone says "you're deaf" in a
teasing scenario, it's like someone saying, "You're mentally
disabled" or "You're autistic" or "You're fat."
Also, I would be careful about saying "proud to be deaf" because for
some people, it's sensitive to say "proud to be deaf" because some
view it as "proud to have a medical issue" like "proud to have
diabetes" or "proud to be blind" and perhaps, Jordan may view it that
way too. Choosing how to define one person's deafness is a very
personal choice, and maybe you might want to ask Jordan how he
defines his deafness. You might want to ask him "Do you view
yourself as a hearing person or as a deaf person?" and ask why, as
that might help you understand why Jordan wants to define himself the
way he chooses to.
The way I view my deafness as part of my life is that I feel that my
deafness has made me a more unique and special person. So, I think
saying "Your deafness has made you a more unique and a special
person" instead of saying, "It's something you should be proud of" would
probably be something Jordan would understand better about being
deaf. Anyway, I apologize if I sound "preachy" but I just wanted to
give you my perspective as someone who grew up with CIs, and I
understand how Jordan feels.
Diane, a hearing mom of a remarkable son, wrote:
Kids are pretty astute and can tell when someone is using words descriptively or
insultingly. And I can't blame someone for not wanting to be called "deaf boy".
My son explained to me that when people referred to him as that, they were making
the deafness the most important part of him. He asked Why don't they call me
Soccer Boy? Smart Boy? Funny Boy? It was a way of singling him out as being
very different from everyone else, when one reason that he had so much speech
and AVT and used HA's and a CI was to be accepted like everyone else. It would
be like calling an African-American, "black boy". Yes, his skin might be very
dark, and yes he might be a boy, but why does that have to be the identifying
characteristic? Can't he be a Swimmer/Singer/Football player/Spelling Bee
Champion/Whatever Boy that happens to be black?
At least, that's how my son felt about it.
My son suffered his share of teasing and insults. I remember one day in the 4th
grade he came home and told me he had been called Stupid Deaf Boy. It was the
Annual 4th Grade VS 5th Grade Kickball Championship. My son had played soccer for
several years at that point and had quite a kick. He kicked a homerun with
bases loaded to help the 4th grade beat the 5th grade. You have to realize,
this was Big Stuff! The 5th graders were the Kings of the Campus and did not
like for one second that the little 4th graders had won. So a 5th grader was
angry at the end and called my son, Stupid Deaf Boy. He was angry and he seized
upon the most obvious thing he could think to try and insult him. By then, we
had gone through our share of ignorance and meanness, so my son was fairly
nonchalant about it. He told me that obviously the boy didn't know one thing
about him or he would have never called him Stupid (by this time my son had been
tested and identified as Gifted and Talented), and so what if the kid called him
Deaf? He was!
I think when he was younger we always talked about the fact that
he had ONE disability and MANY capabilities. We even compared him to specific
kids in school that struggled at things where my son excelled. We pointed out
that they weren't deaf, but that they couldn't do as well at certain things that
he could. We also pointed out constantly that EVERYONE has something to
overcome, that his was just more obvious to the observer. Lastly, we taught him
Consider the Source. Sometimes the biggest thing some kids have to overcome is
IGNORANCE. We talked about how some kids feel a need to put others down in
order to lift themselves up, and that really they deserved our pity.
With regard to the above incident, I'd like to add that my son's 4th grade
classmates heard the boy and were outraged. Before a teacher even had a chance
to do a thing, they surrounded the boy and forced him to apologize to my son. One
insulting kid, many supportive friends.
I'd also like to say that this issue definitely gets better as kids get older.
There is always going to be a jerk (c'mon, how many of us adults know someone
who is a jerk?! I know I do.), but the vast majority of kids will totally see
this as just a part of who their friend is, and not a big deal at all. Along
with our previous post on Prom fun, I'd like to mention (and I don't want to
seem like I'm bragging - just sharing, really!) that my son was recently elected
President of his high school's National Honor Society (by his peers) for his
Senior year, he was selected to be one of two boys from his high school to
participate in the American Legion Boys State program this summer (nominated by
teachers), and we received a phone message that seems to indicate that he is one
of 30 students from our state selected to participate in a selective summer
residential academic program hosted at a university for 4 weeks (application
reviewed by our state's Dept of Education). My point is that his deafness has
become a "non-issue". He's a "regular" kid who can expect to participate in
anything he wants, just like any other kid, and to be accepted by his peers and
adults alike. He's become so "normal"! (Again, absolutely no offense intended
to anyone by my use of that word.)
Hope this helps,
diane
And...Naomi checked in as well (go directly to her blog for more on Bullies-and bring the kleenex):
I'm not sure that it is the fact that it is his deafness that is being referred to but rather that the person using this kind of phrase is clearly insulting him and it is the fact that someone is insulting him that leads to the anger. In the same way that "fat kid" would make a larger child angry, it is the intent behind the words rather than the words themselves.
My son had his share of teasing in his old school, sadly those charged with
dealing with it did their best, but really had no clue. They spent their time
putting out the spot fires rather than trying to change the culture of bullying.
He stopped reporting it to them after awhile.
In my son's case the teasing/bullying came mostly from one child. This child was
small for his age, was of an ethnic background that traditionally do not deal
well with disability, and struggled academically. My son was tall, and a whizz at
school.
My son and I talked about how much of this boy's reaction was about jealousy,
that he was jealous of my son's ability to do so well at school in spite of his
hearing loss. We spent a lot of time talking about how kids that bully will find
something to pick on no matter what, red hair, big nose, glasses whatever! This
kid couldn't get to my son so he started in on my other son with "the freak's brother" oh yeah he was a charmer! We talked about how insecure this boy was and that he tried to make himself feel better by putting other people down.
It wasn't until a year or so later when my son had the maturity to really
discuss it from his perspective that he described home "as a safe haven". He
reported to me that knowing he came home to a place that was safe, supportive
and where he felt so much love, sustained him during the tough times at school.
He moved schools since then and has never been teased in his new school and
has so many mates he is never home!
I think the issue here is helping our kids understand why people behave in
that way. The thing is that whilst I could have cheerfully gone right off at
this kid, I saw the way his parents were, the way he was treated, the
expectations on him, he lived his own hell right there in his own house. His
behaviour was a reflection of that. I think we need to let our kids know that it
is ok to be angry about this stuff but in reality what does all that anger do?
It eats them up and for what? They can't change the behaviour of another person
but they can choose to change the way they respond to that behaviour.
It also comes from developing self-esteem and a good close friendship group.
My son has his friends and he values what they think. Anyone else, he doesn't care
what they think, they are not important to him, so he couldn't care less what
they think about him and doesn't waste a second of the day worrying about it.
*I spent eleven years without support in dealing with psychological and technical issues in raising my Deaf child; now that I have finally found this support, I hope that others who need it...recognize that need and seek it out, because it does exist. Why go through all of this, alone?*
Labels:
bullies,
cochlear implants,
deafness,
disability and parenting
Saturday, May 24, 2008
Summer's Comin'!
Thursday, May 22, 2008
Oh, Your Child is Deaf, I'm SO SORRY...
Fuck you? Here's my foot, wanna see it up your ass? Ignorant bitch? Nooooooooo, we must bite our tongues and educate. Do you know how many times I was given a look of Pity when I told a person my son was Deaf? Can you even imagine the Anger? Yes, I am quite sure You can. I was asked the question, Deaf or Not-Deaf: Who is the more qualified Parent?
Just like my comparison between "qualified" and "unqualified" ASL Teachers, my reply remains somewhere in the middle. A Deaf child born to Deaf parents or Hearing parents will be happy if that child is loved. Here, the communication methodology is Not an issue, the quality of parenting skills is the determining factor.
In Val's The Haircut post, she wrote:
Unfortunately a different stylist opened her mouth (she's done this before!) and apologized to me for my kid being deaf!!!! I played dumb and when she said "I'm sorry" and rolled her eyes toward Gage, I said "excuse me?" and sat there until she made herself clear she was referring to my kid! I wanted to give her a chance despite her previous record. I quickly stated she needn't apologize, it doesn't bother him...I can't wait to go back though, I have a whole list of other things I'd like to say! I mean strike three and you're out right? Even a seven year old has more respect!
Been there, experienced that... and God there is just such rage that builds up to the point of explosion. However, instead of exploding, I educate, share and inform. I wear Cochlear Implant Awareness Gear,
keep my kid's hair cut really short
and write about our experience (in two different languages).
*Then, I let Jordan speak for himself about his Deafness*
People fear what they do not know or understand. When issues regarding Deafness, cis, and ASL/Signing Time etc. go mainstream, the population at large has a greater opportunity to become educated and that fear of the unknown disappears. Rest assured that in this Italian town, we are killing ignorance one person at a time.
I believe in God. I have Faith. 96% of Deaf children are born to Hearing parents (not Deaf parents) and a great number of US Hearing parents are ready to raise our children's voices and use our own. We even learn ASL.
Regarding who is the more qualified parent of a Deaf child, I am obviously unable to Empathize with many of Jordan's experiences in the way that a Deaf parent could, but I am raising my voice together with his and that has to count for something.
PS. This is a MUST-READ POST BY PAOTIE...I WAS ON THE FLOOR. (Dad, click on it, it's the most creative, spectacular take on the game of Golf I've ever read! Even makes the sport seem interesting...*smile*)
Wednesday, May 21, 2008
Dear Jodi...
Jordan went to school yesterday and showed his class RALLY CAPS and his letter. His class applauded and everyone would like a copy. *smile* He came home and gave me this letter that one of his friends who has known us since pre-school gave him to give to me...
Dear Jodi,
You did a great thing writing this book. Jordan showed it to me and I started crying. It's beautiful and what you wrote made me reflect a lot on what has happened to Jordan. Luckily, he is okay now and is a very intelligent guy, almost more intelligent than the rest of us. All kidding aside, Jordan was very lucky because things could have gone a lot worse - he might not have been able to hear, but now he hears and plays the guitar.
I love you forever. (gotta love teen drama)
By, Cecilia
*Whoa*
This is what I mean when I say Jordan's experience touches everyone who comes into contact with him.
Last night I had a baseball meeting with the parents of Jordan's team to discuss a variety of issues regarding the team. By the end of the meeting, that finished at 11:45 pm. every single parent had purchased a copy of the book. I found out this morning that one of the moms donated her copy to the school library. THIS is how it's supposed to go...
BTW...the ORGANIZER OF THE NHS 2008 CONFERENCE I'm DYING to speak at...just called me. I'll have more news in 10 days...prayers would be helpful. *smile*
Shocking...this entire period of my life is just...shocking.
Dear Jodi,
You did a great thing writing this book. Jordan showed it to me and I started crying. It's beautiful and what you wrote made me reflect a lot on what has happened to Jordan. Luckily, he is okay now and is a very intelligent guy, almost more intelligent than the rest of us. All kidding aside, Jordan was very lucky because things could have gone a lot worse - he might not have been able to hear, but now he hears and plays the guitar.
I love you forever. (gotta love teen drama)
By, Cecilia
*Whoa*
This is what I mean when I say Jordan's experience touches everyone who comes into contact with him.
Last night I had a baseball meeting with the parents of Jordan's team to discuss a variety of issues regarding the team. By the end of the meeting, that finished at 11:45 pm. every single parent had purchased a copy of the book. I found out this morning that one of the moms donated her copy to the school library. THIS is how it's supposed to go...
BTW...the ORGANIZER OF THE NHS 2008 CONFERENCE I'm DYING to speak at...just called me. I'll have more news in 10 days...prayers would be helpful. *smile*
Shocking...this entire period of my life is just...shocking.
Tuesday, May 20, 2008
Horse Therapy and Other Programs for Children with Disabilities
OH MY GOD!!! My copy of Ellie's Ears just arrived and I just read it and I'm dying because I LOVE IT!!!! Congratulations, Elizabeth and Rachel!! Um, Rachel, while you're here, I would like my brand new copy signed with a REALLY profound dedication! Love the humor, Elizabeth and the Dinosaur and Alien parts...but my favorite page is the very last one: "Yes, Sam I can hear you..." (Can't spoil the ending!)
Okay, now for my post:
There are many different types of programs available for children with a disability. Yesterday, my best friend in the world Julie, who I've already spoken about sent me this picture of our beautiful boy, Gus ruling the world on top of his horse! Gus is autistic.(Blogger is not letting me copy the photo)
*frustrated (will try later)*
And then there was also the picture of the proud Mom!(Use your imagination here, too)
With all of the shit we deal with on a daily basis, programs such as Equine Therapy/Saddle Therapy/Horse Therapy (call it what you will) represent an opportunity for our kids to let loose, relax and be kids...and we, finally, smile. We took Jordan to Horse Therapy and it was one of the rare moments where he wasn't angry or frustrated. He caressed the horse, brushed it, loved it and rode that bad boy. He loved the equipment and the sense of independence while riding without Mom or Dad holding his hand or insisting on the repetition of some new vocabulary. The vocabulary came spontaneously in his new world of horses.
*Beautiful*
The following article was posted by a very proud mom and member of the Pediatric Cochlear Implant Circle who gave me permission to share this with you: (Way To Go, Tessa!)
THEY FEEL LIKE ... 'THEY BELONG'
Friday night soccer: A six-week program gives children with special needs a league of their own.
By Karen Rosen
The Atlanta Journal-Constitution
Published on: 05/11/08
Five-year-old Tessa Christopher stands in a soccer goal as a ball flies toward her. She deflects it, not really meaning to, then makes a face and rubs where the ball hit her.
"You stopped it!" her dad, Stephen, calls to her, adding, "She's like, 'Ow.' "
But Tessa's ready for more.
She's one of about 40 special needs children ages 4-11 playing soccer at the McCleskey-East Cobb YMCA on Friday nights.
Gus Carpio, who founded the six-week program, knew these kids needed a league of their own.
"There's already plenty of stuff for kids that don't have disabilities," Carpio, 43, said. "Kids that have disabilities have a hard time finding a place to go sometimes."
Here, he said, "They feel like they belong, feel like they're part of a team."
Carpio, a Delta pilot, was already coaching a girls under-12 team when the McCleskey-East Cobb YMCA expressed interest in community outreach.
Carpio knew just what to do. His 8-year-old son Nico, who has cerebral palsy, was in a similar program at age 3.
Carpio put up fliers in March at schools and therapy centers. Expecting 10 or 15 kids to show up, he was surprised to see more than 30. The program had to expand to two fields and new kids are still trickling in.
Apryl Rivers spotted a flier where her son Nevan, 4, goes for speech therapy. She piled Nevan, who is autistic, and his brother Nathan, 6, into the car for the drive from DeKalb County.
"I wanted him to participate in something," she said. "When I saw this program, I was like, 'I don't care where I've got to go, I'll get there.' "
Rivers hopes Nevan learns social as well as soccer skills.
"I really want him to just be able to mingle and play with the kids," she said.
One small problem: Nevan won't put on the forest green soccer shirt given to every kid.
"I've chased him across the field and I give up," Rivers said.
In addition to the shirt, each kid receives a soccer ball. They're assigned a volunteer helper, who also wears a green shirt, or they play with a parent or older sibling.
Some of the helpers are from Carpio's under-12 team. They're recognizable by their pink socks and often go hand-in-hand with their charges across the field.
Tessa Christopher quickly became attached to Chloe Promiscuo, 10, who can teach her how to kick as well as fix the barrette in her hair.
Tessa was born deaf and has cochlear implants in both ears that help her hear.
"She needs improved socialization skills," Tessa's dad said, "but we're hoping that she gets a lot of balance and body control out of it."
Eventually, he said, "I'd certainly like to see her playing a game and following the rules."
This is 5-year-old Larson Bart's first experience with soccer.
"He's as fresh as they come, sports-wise," mom Sonia said. "He's getting wrapped up in the net as we speak."
Like Larson, many of the kids are at the younger end of the age spectrum.
"At this age, their parents are just now looking for a place where they can go out and do something athletic," said Carpio, whom the kids call "Mr. Gus."
"Soccer is a sport that you can sort of play even if you can't catch a ball. This just involves coming out and kind of running after the ball."
TOPSoccer also has a program for special needs kids, and Justin and Silvia Sykes have enrolled son Nathan, 6, who has Down Syndrome, in both activities.
"This is so very kind of Gus to do it because it takes a lot of patience and cooperation from volunteers," Silvia Sykes said.
Parents bring snacks and take pictures with cameras and cellphones. They give high-fives —- lots of high-fives —- to the kids.
"You can just see their faces; it's definitely something that they really look forward to," Michelle Rodriguez said as she watched her son Alek, 8. "They're able to put on their jerseys, and their shin guards and their cleats just like their siblings do."
Alek, who has mild cerebral palsy and hydrocephalus, said he likes defense, but offense is even better.
"It's sweaty work," he said.
Carpio's daughter, Gabi, 11, who plays on the under-12 team, has grown up understanding the patience involved in working with special needs kids.
"It's hard helping those little kids, because they just run off," she said.
What will they be able to do by the end of the program? "I think they'll need to learn a few more skills," Gabi said, "but I think they will at least get it."
And Gabi gets something out of it, too.
"I felt really proud of myself," she said.
After the last practice on Friday, they'll have a pizza party and a trophy ceremony. This fall, Carpio plans a full YMCA season and hopes to have more volunteers so parents can sit back and relax.
He recognizes the commitment each parent makes.
"The parents of kids with disabilities spend their whole day driving to this therapy, to that therapy, taking their kids to special events, so it takes a lot of effort for them to bring them to yet another event," he said. "That's why I always tell them, 'Thank you for bringing your child here.' "
By the end of practice, Nevan was wearing a green shirt just like the other kids.
"Did you have fun today?" Carpio asked him. "I'm really happy you came."
Carpio then said goodbye to Tessa. "I'll see you," she said, "all Fridays."
Okay, now for my post:
There are many different types of programs available for children with a disability. Yesterday, my best friend in the world Julie, who I've already spoken about sent me this picture of our beautiful boy, Gus ruling the world on top of his horse! Gus is autistic.(Blogger is not letting me copy the photo)
*frustrated (will try later)*
And then there was also the picture of the proud Mom!(Use your imagination here, too)
With all of the shit we deal with on a daily basis, programs such as Equine Therapy/Saddle Therapy/Horse Therapy (call it what you will) represent an opportunity for our kids to let loose, relax and be kids...and we, finally, smile. We took Jordan to Horse Therapy and it was one of the rare moments where he wasn't angry or frustrated. He caressed the horse, brushed it, loved it and rode that bad boy. He loved the equipment and the sense of independence while riding without Mom or Dad holding his hand or insisting on the repetition of some new vocabulary. The vocabulary came spontaneously in his new world of horses.
*Beautiful*
The following article was posted by a very proud mom and member of the Pediatric Cochlear Implant Circle who gave me permission to share this with you: (Way To Go, Tessa!)
THEY FEEL LIKE ... 'THEY BELONG'
Friday night soccer: A six-week program gives children with special needs a league of their own.
By Karen Rosen
The Atlanta Journal-Constitution
Published on: 05/11/08
Five-year-old Tessa Christopher stands in a soccer goal as a ball flies toward her. She deflects it, not really meaning to, then makes a face and rubs where the ball hit her.
"You stopped it!" her dad, Stephen, calls to her, adding, "She's like, 'Ow.' "
But Tessa's ready for more.
She's one of about 40 special needs children ages 4-11 playing soccer at the McCleskey-East Cobb YMCA on Friday nights.
Gus Carpio, who founded the six-week program, knew these kids needed a league of their own.
"There's already plenty of stuff for kids that don't have disabilities," Carpio, 43, said. "Kids that have disabilities have a hard time finding a place to go sometimes."
Here, he said, "They feel like they belong, feel like they're part of a team."
Carpio, a Delta pilot, was already coaching a girls under-12 team when the McCleskey-East Cobb YMCA expressed interest in community outreach.
Carpio knew just what to do. His 8-year-old son Nico, who has cerebral palsy, was in a similar program at age 3.
Carpio put up fliers in March at schools and therapy centers. Expecting 10 or 15 kids to show up, he was surprised to see more than 30. The program had to expand to two fields and new kids are still trickling in.
Apryl Rivers spotted a flier where her son Nevan, 4, goes for speech therapy. She piled Nevan, who is autistic, and his brother Nathan, 6, into the car for the drive from DeKalb County.
"I wanted him to participate in something," she said. "When I saw this program, I was like, 'I don't care where I've got to go, I'll get there.' "
Rivers hopes Nevan learns social as well as soccer skills.
"I really want him to just be able to mingle and play with the kids," she said.
One small problem: Nevan won't put on the forest green soccer shirt given to every kid.
"I've chased him across the field and I give up," Rivers said.
In addition to the shirt, each kid receives a soccer ball. They're assigned a volunteer helper, who also wears a green shirt, or they play with a parent or older sibling.
Some of the helpers are from Carpio's under-12 team. They're recognizable by their pink socks and often go hand-in-hand with their charges across the field.
Tessa Christopher quickly became attached to Chloe Promiscuo, 10, who can teach her how to kick as well as fix the barrette in her hair.
Tessa was born deaf and has cochlear implants in both ears that help her hear.
"She needs improved socialization skills," Tessa's dad said, "but we're hoping that she gets a lot of balance and body control out of it."
Eventually, he said, "I'd certainly like to see her playing a game and following the rules."
This is 5-year-old Larson Bart's first experience with soccer.
"He's as fresh as they come, sports-wise," mom Sonia said. "He's getting wrapped up in the net as we speak."
Like Larson, many of the kids are at the younger end of the age spectrum.
"At this age, their parents are just now looking for a place where they can go out and do something athletic," said Carpio, whom the kids call "Mr. Gus."
"Soccer is a sport that you can sort of play even if you can't catch a ball. This just involves coming out and kind of running after the ball."
TOPSoccer also has a program for special needs kids, and Justin and Silvia Sykes have enrolled son Nathan, 6, who has Down Syndrome, in both activities.
"This is so very kind of Gus to do it because it takes a lot of patience and cooperation from volunteers," Silvia Sykes said.
Parents bring snacks and take pictures with cameras and cellphones. They give high-fives —- lots of high-fives —- to the kids.
"You can just see their faces; it's definitely something that they really look forward to," Michelle Rodriguez said as she watched her son Alek, 8. "They're able to put on their jerseys, and their shin guards and their cleats just like their siblings do."
Alek, who has mild cerebral palsy and hydrocephalus, said he likes defense, but offense is even better.
"It's sweaty work," he said.
Carpio's daughter, Gabi, 11, who plays on the under-12 team, has grown up understanding the patience involved in working with special needs kids.
"It's hard helping those little kids, because they just run off," she said.
What will they be able to do by the end of the program? "I think they'll need to learn a few more skills," Gabi said, "but I think they will at least get it."
And Gabi gets something out of it, too.
"I felt really proud of myself," she said.
After the last practice on Friday, they'll have a pizza party and a trophy ceremony. This fall, Carpio plans a full YMCA season and hopes to have more volunteers so parents can sit back and relax.
He recognizes the commitment each parent makes.
"The parents of kids with disabilities spend their whole day driving to this therapy, to that therapy, taking their kids to special events, so it takes a lot of effort for them to bring them to yet another event," he said. "That's why I always tell them, 'Thank you for bringing your child here.' "
By the end of practice, Nevan was wearing a green shirt just like the other kids.
"Did you have fun today?" Carpio asked him. "I'm really happy you came."
Carpio then said goodbye to Tessa. "I'll see you," she said, "all Fridays."
Monday, May 19, 2008
Hot off the Press (Finally): RALLY CAPS IN ITALIAN!
Dad, are you paying Caaaaaaaaalose attention??? I now have THE ITALIAN VERSION OF RALLY CAPS IN MY HANDS!
*Shocking*
When I told my girl Mavi, (12 years old) she said it has been like being pregnant for the past nine months and we have finally delivered.
*Tee-hee*
I wanted to go out and party. Even better...after picking up twenty copies of the book, Sofia and I came home; I cooked dinner for the kiddies, played three mean games of Go Fish (while suckin' on a spoonful of nutella or fifteen), gently threw them in their pjs and settled in for three-in-a-bed storytime. Only, tonight...
*drum roll please*
The book of the night was RALLY CAPS in Italian. You should have seen the look on Jordan's face when he opened the book he's been seeing and signing for the past year and could finally understand it. He laughed and jumped on the bed when he saw it was dedicated to Luca, Sofia Madyson and Jordan the boy with music in his ears who dreams of homeruns.
Then, he flipped to the Acknowledgements page where he saw Dr. Lenzi, Dr. Camuffo, Prof. Berrettini, Dr. Bigozzi, Dr. Forli, and all of his pre-school and Elementary School teachers listed on two pages of thank you's.
But the MOST EXCITING moment for Jordan was when he saw the Letter to the Reader that HE wrote...yeah, my eleven year old son is Published. *smile*
He's on Chapter 3 and said he's taking it to school tomorrow. I bet the hell he is, he's a Superstar!
Sunday, May 18, 2008
Deaf or Not-Deaf: Who is the More Qualified ASL Teacher?
Ahhh. Finally, a really GOOD weekend. I've been meaning to respond to the comments left on my post about deafread.com's oversight in posting Karen Putz's Blog on Rachel Coleman's Emmy Nomination. I'm kind of proud of myself because my first reaction was to "go off" regarding the importance of Signing Time for hearing mothers of deaf children. Then, strangely, I took a moment to actually reflect on the commenters' perspectives. These were the two comments that I found thought-provoking:
Deaf258 said...
Not to be a downer or anything.. But why do people honor hearing people and not Deaf when it comes to ASL products for the public?
There is something wrong with the picture.
g l said...
I'm a little puzzled... I've long been familiar with Signing Time and have always thought the great show was for hearing siblings and hearing parents. How do we classify it as deaf-centric, which is what the main page is intended for?
I know Deafread.com can use criticism now and then, but I'm not convinced this is a constructive example.
Deafread.com is evolving with the addition of many new voices of parents getting more and more involved in the Deaf Community by means of these blogs. The Pediatric Cochlear Implant Circle and Listen-Up yahoo support groups constantly earmark interesting discussions on a variety of controversial blogs. Rachel Coleman is important for hearing parents of Deaf children and...the driving force behind "Deaf-Centric" from what I understand, is the desire for Every Deaf Child to learn ASL as their "native tongue."
This idea of "native tongue" is what stopped me from ranting and caused me to think. You see, I am a Mother-Tongue English Teacher here in Italy and I have seen many an Italian teacher MASSACRE English while teaching innocent young Italians MY language. I am convinced that the only person qualified to teach English is, in fact, a Native Speaker.
*However*
Some "Mother-Tongue" English teachers are just not good teachers. Teaching is not an ability that a University can teach you, you are either born with it or you are not. It's all about passion and reaching students. A quality Italian English Teacher who really knows the English language well can actually be a better English teacher than a Mother-Tongue teacher, because she truly understands the subtleties and problematic areas of both languages enabling her to better explain and anticipate her students' potential areas of difficulty.
Rachel Coleman is one of these passionate teachers. No, she is not Deaf, but she teaches a rockin' mean introduction to ASL that is reaching the mainstream population. Isn't that the fundamental dream of a Deaf-Centric deafread.com?
PS...Monkey-boy Christian (an avid watcher of Signing Time) has just learned to say..."Elmo!" Love that boy!
Friday, May 16, 2008
La SINPIA Endorses RALLY CAPS: Thanks to our Child Psychiatrist Extraordinaire
I am overwhelmed, exhausted and amazed. Just when you think life calms down, another exciting thing happens. This period is plain old beyond. Okay. Let's talk Child Psychiatrist and his role in our journey...but before I do, I just want to thank Dr. Mauro Camuffo for his assistance in my request for the endorsement of RALLY CAPS on behalf of the SINPIA (SOCIETA' ITALIANA DI NEUROPSICHIATRIA DELL'INFANZIA E DELL'ADOLESCENZA - THE ITALIAN SOCIETY OF CHILD AND ADOLESCENT PSYCHIATRY)
Dr. Camuffo, famous for his eloquent speeches, many published works, ability to connect with children, leadership positions, and a mean jumpshot on the b-ball court, has been a consistent source of reliability and strength in our journey.
Every single time I would go to Baltimore to visit my parents, Jordan would have a meltdown due to the added language stress of English on top of Italian and my mom would say, "Jordan needs anger management assistance." So, immediately upon my return, I would RUN to Dr. Camuffo for reassurance that my son was not an aggressive behavioral case. (I think I was the behavioral case *smile*)He would calm me down and say that acquiring Italian was frustrating enough for Jordan, adding English on top of that was obviously more than he could handle. So, I would give him the old Italian double cheek smack and go on my way...a lot less worried.
*During those years, ANYONE who could decrease my worry level was my hero*
The role of the Child Psychiatrist is also instrumental in the Italian version of the "IEP." We have meetings with all of the teachers twice a year and Dr. Camuffo attends these meetings to provide support for both the teachers and the family regarding didactic and social concerns. Through the years, he has gotten to know our family very well and has consistently been available to answer any questions I may have had about Jordan.
Dr. Camuffo is just another fiiiiiiiiiiiine example of an Italian Medical Professional.
Have a great weekend!
Wednesday, May 14, 2008
Deafread.com Editors: I Think I'm a Little Confused
Why was the news of Rachel Coleman's Emmy Nomination NOT considered important enough to be on the main Blogs page?
*Pissed off*
My blog has been posted on deafread.com for the past six months and the ONE consistent message I continue receiving is TEACH YOUR KID ASL! Please explain why Rachel Coleman's (one of my favorite inspirational moms)EMMY NOMINATION was left on the Extras page???????????? She is bringing Signs to the mainstream population and single-handedly building bridges.
I would like to thank both the Steak and Shake Queen (we all know and love her as DEAFMOM Karen Putz) and Paotie (He is not merely a sex-crazed snow-boarder who likes big tits and blondes...he actually has a heart, as demonstrated by the sensitive tattoo on his ass cheek)for sharing the news.
This is my post from November 25th, check it out! Congratulations, Rachel...on an INCREDIBLE accomplishment that is so well-deserved...
And for those of you who missed Karen and Paotie's posts...here they are:
Karen Putz posted this on May 2nd...
Rachel Coleman of Signing Time Nominated for Emmy
"It's singing time and laughing time and playing time and now it is my favorite time, signing time!"
The first time I saw a tape of Signing Time, I couldn't get the lyrics out of my mind. I suspect that's one of the reasons that Signing Time has become successful in the mainstream. Little toddlers everywhere are listening to the songs, watching the videos and moving their hands to communicate.
Rachel Coleman, the mom behind Sign Language for Baby!,was recently nomimated for an Emmy. It's been an amazing trip for her, especially since the intitial production was a family affair with her sister and husband helping to create the videos.
I did an interview with Rachel several years ago when the Signing Time series of videos was beginning to take off:
Meet the Colemans: The Story Behind Signing Time
Congrats to Rachel-- all of her hard work has paid off!
Paotie posted this:
Posted by Paotie on 5/08/2008 - [ 11 Comments ]
Denver - An alert reader of Paotie’s Green Couch has sent in a report that a children’s American Sign Language educational program has been nominated for an award at this year’s 35th annual Daytime Entertainment Emmy awards show in Hollywood. Rachel Coleman, star of the popular show, Signing Time, was nominated as an “Outstanding Performer in a Children’s Series,” according to the nydailynews.com web site.
Coleman, whose first daughter, Leah, was diagnosed as profoundly deaf at age 14-months, learned American Sign Language (ASL) to communicate with her daughter. Coleman would later decide to teach ASL to children and began producing Signing Time videos, which are available on CDs, DVDs, and through PBS stations.
A second child, Lucy, was born with cerebral palsy and a doctor warned Coleman that her child “was profoundly retarded and would never speak.” Then one day, Lucy signed the ASL word for more and “It was amazing that her first communication was in [ASL],” said Coleman. “Her next sign was ‘water,’ and though it wasn’t perfect, we knew what she wanted.”
Today, Lucy is in second grade, loves to sing and attends a mainstream school. Leah is now a fifth grader after skipping a grade, and recently won a spelling bee.
“If we had believed that doctor and not signed with her, she would have been locked in that body and not communicating. Now, she speaks beautifully.” - Rachel Coleman on Lucy
To read more about Rachel Coleman’s Emmy award nomination, her daughters and Signing Time, click here.
Tuesday, May 13, 2008
Patience and Priorities
I woke up this morning to one of the most beautiful emails I have ever received...this song's for you WOMAN!
This afternoon I got an AMAZING phone call, the phone call I've been hoping for and...I couldn't talk. I was in middle of a lesson with two of my students who are studying for an exam next week, so I couldn't desert them to talk to my phone call of a lifetime. He said he would call back at 6:30...and didn't. So, it is taking all of the patience I have mustered in the past 11 years of my life here in Italy not to freak out. I'm cool. NOT.
Patience is definitely required when:
Waiting for the result of the ABR;
You have an 11:00 am audiologist's appointment one and a half hours from your home with a 13 month old who NEVER stands still and she sees you at 3:00 pm (Damn good thing she didn't understand English:));
Waiting for the results of the genetics test to see if your child's deafness was genetically caused (Jordan's was not, we have no idea why he was born deaf, and to be quite honest, I was more concerned about helping him learn to speak than spending useless energy asking why - although, I do understand that MANY parents need to know that answer);
Waiting for my son to get that "S" - that "S" sound is a bitch;
Teaching my son to learn to read, spending grueling hours upon hours with flash cards trying to make it "click";
You're pregnant with your second child...nine months of wondering;
They give you the cochlear implant surgery date and it isn't the next day;
Someone calls you the night before the surgery to tell you, "Don't do it! You'll ruin your son!";
Your cochlear implant activation date is three weeks after the ci surgery;
Your son freaks out at the first mapping, refuses to wear the processor and develops genuine fear anytime someone tries to make him put it on;
A woman announces a three hour layover in Philadelphia after having driven two hours from Grosseto to Rome, spent two hours in the Fiumicino airport for an International Departure, occupied two restless kids for a ten hour transatlantic flight where one of the two clogged one of the eight airplane toilets with a roll of toilet paper after you let him go by himself for the first time ever, thinking he was mature enough to pee, wash his hands and get out safely;
Your kids make mistakes, you know they are making mistakes, yet you are helpless to help them.
And the list goes on and on and on...
As frustrating as it has been learning this great lesson of Patience, it has been just as rewarding, and I am growing. I have this strange sensation that a cycle of my life has just ended and a new one is beginning. As frustrating as it has been to be in a sort of limboland for the past year and a half, I am conscious of all that I have learned, how our experience with Jordan has required that my husband and I grow together in a very special relationship filled with so much love, patience and respect, and how we are both at a point in our lives where we are getting to know ourselves after the storm.
I have been driving the same street from my house in Istia to Grosseto for the past eight years. Two days ago, Jordan had a fieldtrip and wanted me to take him to school instead of the bus. So, I loaded Sofia in the car with Jordan, drove him to his school in Grosseto, drove back to Istia to take Sofia to school, drove back to Grosseto to work, drove back to Istia to prepare lunch and so on. I usually would have been annoyed to have had to go back and forth so many times, instead I was just happy to be with my kids.
And, instead of focusing on the millions of thoughts running through my head, I started to look around at the scenery. I noticed a pink villa I had never seen before, a piece of broken bridge, a couple of clouds in the form of sheep and a cluster of red poppies in the middle of a green field. Tuscany is one of the most beautiful places in the world, and limboland can be very enriching if one just learns a little Patience.
Monday, May 12, 2008
Italy ROCKS! NHS 2008...Here I Come!!!
Oh, oh, where to begin! I think my head may just explode. First of all, my guardian angels of Cochlear Italia decided that they would let me, as a courtesy, be a part of their exhibition at NHS 2008, but they told me I was not allowed to talk...hmmm. They said I could promote RALLY CAPS in Italian and English and speak to the physicians present, but I could not talk.
WHAT TO WEAR!!! (I think the little purple dress may be inappropriate.)
*Does anyone know Ferdinando Grandori or Deborah Hayes?*
They are the people responsible for organizing the convention.
I want to talk...not about RALLY CAPS, about this: "Never Under-estimate the Power of a MOM...with a couple of beautiful activation videos of the kids on this blog and their inspirational stories.
I think the Doctors need to have an idea of exactly who it is they're dealing with, for example a mom just left this poem on one of the posts:
A comment about our relationship with the medical profession...
Even though my comment seems is out-of place below all the other comments, I wanted to share this poem my wife wrote - and gave to the surgeon, prior to Lotte's operation
Take this child
Give her wings
to hear
the sound of my smile
Give her wings
to hear
the radiance of my eyes
Never the same again
after today
Blessed
with an exceptional gift
To hear light
To see sound
gives wings to the soul
*beautiful*
Next news:
Our pediatrician helped me get the National endorsement of the Federation of Italian Pediatricians, lovin' that.
The presentation of the Italian Version of Rally Caps will be on June 7th, I think ten people will be speaking, including Jordan and the Mayor will be present.
BBC Orioles GROSSETO, the Italian National Baseball Champions (funny how that worked out, isn't it?), has also endorsed our book and they decided that they would like to present the book at the stadium before a game and...Jordan will throw out the first pitch.
*Miracle of all miracles: I haven't even had to sleep with anyone, people just love our story!*
Now, this is my next thought. I would really like to raise funds for a Newborn Hearing Screening Program in Grosseto. I've started talking to a number of people who are actually willing to donate money towards this project. Now...I need to do some research.
On the home-front:
Jordan got a bases loaded triple two games ago and went 3 for 3 in his last baseball game.
He went to Florence with his school to participate in a concert. He sang in the choir and went souvenir shopping with his class. He came home with the following souvenirs: a small crystal ball of Florence - one of those shake and snow types, a collection of mini-postcards of Florence, a postcard for his uncle of women with bare asses, a mini replica of Florence and...a magnet of The Statue of David's private part. My son is confused. Just like his Mamma!
This killed me- Thanks Val *smile* BTW: HAPPY BIRTHDAY, GAGE-THIS SONG'S FOR YOU!!!!:
...As an original Rally Caps Tribe Member, Gage received a Rally Caps shirt and is seen here supporting her while he listens to ACDC on the computer.
DISCLAIMER: this blog "Cochlear Kids" is in no way, shape, or form to be held responsible for what comes out of the mouth of said named above (Jodi). Enter at your own risk, cursing, loud music, and sometimes sexy photos mysteriously appear on her blog. And that's why we love her! **smile**
Friday, May 9, 2008
Post # 200 - This One is for all the Moms
Today is my mom's birthday (Happy Birthday Mom!) and the anniversary of my Pop's death, how ironic that it is also my 200th blog post. I could think of no more fitting post than a Happy Mother's Day post, because the heart of this blog is the heart of a Mamma. I have met so many extraordinary moms in the past year who have sacrificed jobs, freedom and friendships to dedicate themselves entirely to their kids...their sacrifices have been selfless and unconditional with the sole intent of raising happy, well-rounded kids. Each one of their stories is inspirational...as are their kids. (A special thank you to the mom who offered me a pole in her backyard, quite touching *smile*)
Mothers
Anonymous(sent by another powerhouse of a Mom, Rhonda)
This is for the mothers who have sat up all night with sick toddlers in their arms, wiping up barf laced with Oscar Mayer wieners and cherry Kool-Aid saying, 'It's okay honey, Mommy's here.'
Who have sat in rocking chairs for hours on end soothing crying babies who can't be comforted.
This is for all the mothers who show up at work with spit-up in their hair and milk stains on their blouses and diapers in their purse.
For all the mothers who run carpools and make cookies and sew Halloween costumes. And all the mothers who DON'T.
This is for the mothers who gave birth to babies they'll never see. And the mothers who took those babies and gave them homes.
This is for the mothers whose priceless art collections are hanging on their refrigerator doors.
And for all the mothers who froze their buns on metal bleachers at football or soccer games instead of watching from the warmth of their cars.
And when their kids asked, 'Did you see me, Mom?' they could say, 'Of course, I wouldn't have missed it for the world,' and mean it.
This is for all the mothers who yell at their kids in the grocery store and swat them in despair when they stomp their feet and scream for ice cream before dinner. And for all the mothers who count to ten instead, but realize how child abuse happens.
This is for all the mothers who go hungry, so their children can eat.
For all the mothers who read 'Goodnight, Moon' twice a night for a year. And then read it again. 'Just one more time.'(one of my all-time favorites)
This is for all the mothers who taught their children to tie their shoelaces before they started school. And for all the mothers who opted for Velcro instead.(Velcro all the way, baby)
This is for all the mothers who teach their sons to cook and their daughters to sink a jump shot.
This is for every mother whose head turns automatically when a little voice calls 'Mom?' in a crowd, even though they know their own offspring are at home -- or even away at college or have their own families.
This is for all the mothers who sent their kids to school with stomach aches, assuring them they'd be just FINE once they got there, only to get calls from the school nurse an hour later asking them to please pick them up. Right away.
This is for mothers whose children have gone astray, who can't find the words to reach them.
For all the mothers who bite their lips until they bleed when their 14 year olds dye their hair green.
For all the mothers of the victims of recent school shootings, and the mothers of those who did the shooting.
For the mothers of the survivors, and the mothers who sat in front of their TVs in horror, hugging their child who just came home from school, safely.
This is for all the mothers who taught their children to be peaceful, and now pray they come home safely from a war.
What makes a good Mother anyway? Is it patience? Compassion? Broad hips?
The ability to nurse a baby, cook dinner, and sew a button on a shirt, all at the same time?
Or is it in her heart?
Is it the ache you feel when you watch your son or daughter disappear down the street, walking to school alone for the very first time?
The jolt that takes you from sleep to dread, from bed to crib at 2 A.M. to put your hand on the back of a sleeping baby?
The panic, years later, that comes again at 2 A.M. when you just want to hear their key in the door and know they are safe again in your home?
Or the need to flee from wherever you are and hug your child when you hear news of a fire, a car accident, a child dying?
The emotions of motherhood are universal and so our thoughts are for young mothers stumbling through diaper changes and sleep deprivation... And mature mothers learning to let go.
For working mothers and stay-at-home mothers.
Single mothers and married mothers.
Mothers with money, mothers without.
This is for you all. For all of us...
Hang in there. In the end we can only do the best we can. Tell them every day that we love them. And pray and never stop being a mom...
'Home is what catches you when you fall - and we all fall.'
Thursday, May 8, 2008
Dear Medical Professionals...
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...very rare.
This is the dedication in the Italian version of RALLY CAPS to all of the medical professionals and teachers who have helped us throughout our journey.
In all of the everyday shit you hear in the News about how Medicine has gone bad, malpractice this and I'm sueing that, we are a POSITIVE example of how the Italian National Healthcare System can be successful when all contributing aspects work together to provide a network of support for the family. How ironic that most people tend to complain when things go wrong and RARELY recognize when things go right. Our message is too important for too many people to stop now.
An anonymous mom sent me this in an email message:
I disagree completely with the don't blog, don't CI Circle comments. True this stuff can be all encompassing, but dearest Jodi, it is part of the journey. Going through this journey is what has given you that strength and self-belief and giving to others, helping others is part of what gives you your strength and belief in yourself right now. It is a big part of what makes you happy, I know that because that is me too! It is a part of our makeup, making a difference no matter how small, in the lives of others, is part of what drives us, part of what gives us satisfaction in ourselves and the people we are.
Thank you so much to everyone who left comments...every single comment touched me. It's incredible how help comes to you when you least expect it from people you only know virtually. This whole blogging thing is so powerful for me, I only hope that our story can provide a reference point for others who are at different points in the journey.
In regard to the personal, really personal stuff, I'm done sharing.
In regard to the rest...I'm only just getting started.
This is the dedication in the Italian version of RALLY CAPS to all of the medical professionals and teachers who have helped us throughout our journey.
In all of the everyday shit you hear in the News about how Medicine has gone bad, malpractice this and I'm sueing that, we are a POSITIVE example of how the Italian National Healthcare System can be successful when all contributing aspects work together to provide a network of support for the family. How ironic that most people tend to complain when things go wrong and RARELY recognize when things go right. Our message is too important for too many people to stop now.
An anonymous mom sent me this in an email message:
I disagree completely with the don't blog, don't CI Circle comments. True this stuff can be all encompassing, but dearest Jodi, it is part of the journey. Going through this journey is what has given you that strength and self-belief and giving to others, helping others is part of what gives you your strength and belief in yourself right now. It is a big part of what makes you happy, I know that because that is me too! It is a part of our makeup, making a difference no matter how small, in the lives of others, is part of what drives us, part of what gives us satisfaction in ourselves and the people we are.
Thank you so much to everyone who left comments...every single comment touched me. It's incredible how help comes to you when you least expect it from people you only know virtually. This whole blogging thing is so powerful for me, I only hope that our story can provide a reference point for others who are at different points in the journey.
In regard to the personal, really personal stuff, I'm done sharing.
In regard to the rest...I'm only just getting started.
Tuesday, May 6, 2008
Dear Anonymous Mom...
This, I think, has quite possibly been one of the longest days of my life. The only thing that keeps running through my head, though, is what one of my students said to me a couple of days ago. This adorable four year old who screams the words to the thousand songs we sing in English said, "Jodi, Jodi, guess what I saw yesterday...I saw the sun fall into the sea!" You should have seen his face...kids have such a way of simplifying the world.
So many people have written asking how I am, and when I answered one mother with this letter, she responded in such a way that I understood that I am not the only one who has gone through this exact same situation. As personal and difficult as all this is, I'm posting it, so maybe it will help someone else know how to go about this being a mom to a child with a disability thing...and what to avoid, so you don't find yourself where I am at this very moment...
Dear Anonymous Mom,
First of all you know that I already love you and your letter made me love you even more. Thank you so much for taking the time to ask, I really appreciate it.
I've been kind of changing and growing since I found the Ci Circle and started blogging about a lot of the shit we went through during the really difficult years with Jordan. As I've said it's all been a cathartic experience for me and helped me find myself when I had been lost for a long time. I started growing and Luca didn't come with me even though I tried to give him signs to come along. I know that my husband loves me totally and is in love with me, but I don't have that in love feeling anymore. I feel really out of place here and everything about my life is in limbo. I work from 9-8, blog and when I have time add to the support groups, I am not doing anything I want to be doing except blogging and reading the support groups. I have lost touch with my kids because I have had to work so much and during this away time, I have been becoming aware of who I am maybe for the first time in my life.
As a kid, I tried to help my parents and be the bureaucrat of the family, then we got married and one year later found out about Jordan's deafness, so I rolled up my sleeves and became Jordan's mom...I went through it alone. Yes, my husband was there being a good father, but he did not help me during a time when I didn't know the language and struggled. I think I have a lot of resentment, but I don't blame him. So, after so many years of doing for others, along comes the cochlear implant and allows Jordan to become independent, so he doesn't need me anymore to such a great extent. This newfound freedom and the book allowed me to become me for the first time in my life. I feel really strong right now as sad as I am... and I need to figure out if the new person I am wants to be with the man I married twelve years ago.
I started growing and he woke up a little too late. We are both really good people and I love him so much, but not that in love love.
He looks at me with passion and realizes that I don't have it and it is killing both of us. We have been seeing an amazing psychologist for the past month who is really helping both of us, but I'm behind in being able to make that choice again that I made twelve years ago, because I am a different person now than I was then. Basically, I'm being selfish. I have NEVER been selfish in my life, but I need to figure out who I am and what I see my life as twenty years from now. And it is not easy knowing that I will never find another man like my husband because he is the total package. Anonymous Mom, we haven't fought in twelve years...that is the problem. We were so good at giving each other space that we got lost, at least I did.
It's not easy, maybe now that he left to give me space, I can get my head together.
Thanks again...Jodi
As a side note...after I discussed the changes that were going on in our home with Jordan, he asked if it would be okay if he and Sofia could live in two separate houses. Unbelievable.
(TBC)
So many people have written asking how I am, and when I answered one mother with this letter, she responded in such a way that I understood that I am not the only one who has gone through this exact same situation. As personal and difficult as all this is, I'm posting it, so maybe it will help someone else know how to go about this being a mom to a child with a disability thing...and what to avoid, so you don't find yourself where I am at this very moment...
Dear Anonymous Mom,
First of all you know that I already love you and your letter made me love you even more. Thank you so much for taking the time to ask, I really appreciate it.
I've been kind of changing and growing since I found the Ci Circle and started blogging about a lot of the shit we went through during the really difficult years with Jordan. As I've said it's all been a cathartic experience for me and helped me find myself when I had been lost for a long time. I started growing and Luca didn't come with me even though I tried to give him signs to come along. I know that my husband loves me totally and is in love with me, but I don't have that in love feeling anymore. I feel really out of place here and everything about my life is in limbo. I work from 9-8, blog and when I have time add to the support groups, I am not doing anything I want to be doing except blogging and reading the support groups. I have lost touch with my kids because I have had to work so much and during this away time, I have been becoming aware of who I am maybe for the first time in my life.
As a kid, I tried to help my parents and be the bureaucrat of the family, then we got married and one year later found out about Jordan's deafness, so I rolled up my sleeves and became Jordan's mom...I went through it alone. Yes, my husband was there being a good father, but he did not help me during a time when I didn't know the language and struggled. I think I have a lot of resentment, but I don't blame him. So, after so many years of doing for others, along comes the cochlear implant and allows Jordan to become independent, so he doesn't need me anymore to such a great extent. This newfound freedom and the book allowed me to become me for the first time in my life. I feel really strong right now as sad as I am... and I need to figure out if the new person I am wants to be with the man I married twelve years ago.
I started growing and he woke up a little too late. We are both really good people and I love him so much, but not that in love love.
He looks at me with passion and realizes that I don't have it and it is killing both of us. We have been seeing an amazing psychologist for the past month who is really helping both of us, but I'm behind in being able to make that choice again that I made twelve years ago, because I am a different person now than I was then. Basically, I'm being selfish. I have NEVER been selfish in my life, but I need to figure out who I am and what I see my life as twenty years from now. And it is not easy knowing that I will never find another man like my husband because he is the total package. Anonymous Mom, we haven't fought in twelve years...that is the problem. We were so good at giving each other space that we got lost, at least I did.
It's not easy, maybe now that he left to give me space, I can get my head together.
Thanks again...Jodi
As a side note...after I discussed the changes that were going on in our home with Jordan, he asked if it would be okay if he and Sofia could live in two separate houses. Unbelievable.
(TBC)
Monday, May 5, 2008
Requesting Help From Deafread.com and Anyone Reading
Okay. I just found out about this Conference - NHS 2008 that is being held in Cernobbio (Lake Como, where George Clooney has a place:))from June 19-21st - I'm a little late. I am DYING to go and SPEAK! But, if I can't speak, I would settle for going. Does anyone know anyone who could get me in there??? All I have to do is hop on a train!
This was their call for Abstracts that I missed:
Call For Abstracts
Don't miss the opportunity to be a presenter at the NHS 2008!
Submissions are particularly encouraged on:
Neuromaturation and plasticity
Genetics of hearing loss
Auditory Neuropathy (poster presentation only)
Cochlear implants
Technological improvements in diagnosis and Hearing Aids
Steady State Evoked Potentials
Intervention strategies for infants
Changing criteria for cochlear implantation in early infancy
Outcome measures of early intervention
Other topics of interest are:
Physiologic measures of audiological function - Language development, cognition and deafness - Newborn hearing screening - Audiological assessment - Clinical decision making in the audiological test battery - Aetiological evaluation - Mild and unilateral hearing loss - Information management, tracking and monitoring - Program evaluation and quality issues - Outcomes of early identified children (long lasting programs) - Language outcomes in infants with cochlear implants - Medical and surgical intervention for hearing loss - Pediatric hearing health services - Family-directed services for deaf and hard-of-hearing infants - Family counselling - Web-based resources for parents and professionals - Impact of deafness on family systems - Perspectives of the Deaf community - Parents' perspective.
Sounds damn interesting and I know I could learn a lot here. I hate it when I arrive late! So, I am asking for help from the blogosphere - a VERY POWERFUL PLACE. I've sent like four emails to various people who have not responded. *getting frustrated*
You know, ironically, I had a conversation with one of my students today. We were talking about which high school he was going to choose - in Italy they are specialized, not generic and the school you choose when you are fourteen is a major decision because you basically choose your life path based on that school. His father is an attorney and this boy has attorney potential, so I asked him if he intended on following in his dad's footsteps. He said he wanted to "do it all on his own" and not be a "daddy's boy with a silver spoon."
I would have said the same thing when I was his age, I never wanted anything handed to me, I have worked my ass off for everything I have ever achieved. And it is for that reason that I said to him, "Federico, life is hard enough as it is. If you have an opportunity to practice law with your dad, take it. Once you're in, you'll make your own name, but if you have that chance, which is so rare in Italy where to get anywhere in this country you need to know someone, (unless you are an American Mamma *smile*)TAKE IT AND RUN WITH IT!"
So, I am following my own advice and asking for someone to get me the hell to that Convention! Please!! Email me: jodi@rallycaps.net
PS. Thank you to everyone who left comments and sent emails...I kept them for myself, personally...I am a VERY lucky woman.
Really Painful Day
Saturday, May 3, 2008
Blue
I think I'm becoming a schizophrenic blogger...today is a sad day. I was so happy because during the week one of my student's moms told me that Perla was coming to Dublin with us in August. I went to her house today, and her mom said she won't be coming because she opened a big mouth. Perla ALWAYS opens a big mouth. I cried, literally started crying right then and there. Then, Perla's mom started crying and we had a huge cryfest. I'm hoping the fact that I resorted to tears helps the situation...*smile*
So, to get over my
mood, Perla and I read this poem by Shel Silverstein (love him!):
SOMETHING MISSING
I remember I put on my socks,
I remember I put on my shoes,
I remember I put on my tie
That was painted
In beautiful purples and blues.
I remember I put on my coat,
To look perfectly grand at the dance,
Yet I feel there is something
I may have forgot-
What is it? What is it?...
Then, I kind of recovered until I went to Val's blog and read this:
A New Pair of Shoes-a Mother's Day story
I thought it would be a good time to share this story with you with the holiday around the corner. It's about the time I got a new pair of shoes. Now I've worn many shoes over the years but these were no ordinary shoes. In fact, I had wanted a pair of them for years but the circumstances were never right for me to make such an investment.
My own mother had a pair and had worn them for years before I decided I wanted some just like those one day. I knew they had to be comfortable. Why I had watched her march around in those shoes all day, cooking, shopping, she did everything in those shoes. Sometimes I'd watch...waiting for her to take them off so I could sneak in her closet...slip them on my small feet so I could wear them, hoping that one day they would fit me. I finally realized when I got older that these shoes were custom made. You couldn't really put on someone else's, you had to have your own pair or they may never have that perfect fit.
I patiently waited year after year until it was time to get fitted for my own shoes. Oh how they measured me up and down and all around...but they told me that I'd have to wait a few months before I could pick them up. I wanted to just wear them home that day but I understood the importance of waiting. I wanted them to be perfect! I wanted to be so proud to wear these shoes, that everyday I would always pick that pair. I wanted them to last forever like my mother's pair seemed to. I planned to take good care of them because a pair of shoes that takes that long to make couldn't be replaced easily, and besides...no refunds or exchanges on these.
Somedays as I waited for my shoes to be customized to that perfect look, that perfect size, that perfect fit...I would walk around the house pretending they were on my feet. My husband would find me in front of the mirror...just hoping I would be able to wear them as well as my mother wore hers. We'd sit around wondering what the finished product would look like. I hoped my husband like them, and I hope he liked me in them!!
I woke one morning and the wait was nearly over. My shoes were now ready. As we got into the car, my husband and I talked about anything to keep my nervous mind off the shoes. Truth be known, I wasn't sure I was ready for them. What if I put them on and they don't fit? What if they aren't as comfortable as mother made them look?
We finally arrived and we went in and waited, and waited and waited some more! I thought they were ready. I had just about given up on getting the shoes that day when I saw someone bringing me a package. Was that my shoes? The package was smaller than expected and when I peeked inside, they didn't look exactly like I had imagined all these years...but they were beautiful, and all mine! The lady who had so carefully wrapped my shoes tried to point out a few mistakes the shoemaker had made.
Although I could see the "imperfections" I knew that the shoemaker never makes mistakes. They were customized shoes remember, made to fit me. So what if they ended up even more special. After marveling in the fine craftsmanship I suddenly realized why they took so long to make. It wasn't the shoes I was waiting on exactly, rather my feet to fill them. Just like alot of shoes, they were tight at first. I had to break them in but my mother was there to guide me, pretty soon they were the perfect fit.
I guess anyone can get a pair of these shoes afterall but not everyone's fit this good. I've slid my feet inside these shoes everyday since...just like my mother always wore hers. They are my "Mommy Shoes". All of our shoes get scuffed from time to time but it's the "soul" that's most important.
*I got emotional*
Then, I saw this:
*Double Smile...Adorable*
Quite a writer that Val!
And you know what they say..."If the shoe fits..."
So, to get over my
mood, Perla and I read this poem by Shel Silverstein (love him!):
SOMETHING MISSING
I remember I put on my socks,
I remember I put on my shoes,
I remember I put on my tie
That was painted
In beautiful purples and blues.
I remember I put on my coat,
To look perfectly grand at the dance,
Yet I feel there is something
I may have forgot-
What is it? What is it?...
Then, I kind of recovered until I went to Val's blog and read this:
A New Pair of Shoes-a Mother's Day story
I thought it would be a good time to share this story with you with the holiday around the corner. It's about the time I got a new pair of shoes. Now I've worn many shoes over the years but these were no ordinary shoes. In fact, I had wanted a pair of them for years but the circumstances were never right for me to make such an investment.
My own mother had a pair and had worn them for years before I decided I wanted some just like those one day. I knew they had to be comfortable. Why I had watched her march around in those shoes all day, cooking, shopping, she did everything in those shoes. Sometimes I'd watch...waiting for her to take them off so I could sneak in her closet...slip them on my small feet so I could wear them, hoping that one day they would fit me. I finally realized when I got older that these shoes were custom made. You couldn't really put on someone else's, you had to have your own pair or they may never have that perfect fit.
I patiently waited year after year until it was time to get fitted for my own shoes. Oh how they measured me up and down and all around...but they told me that I'd have to wait a few months before I could pick them up. I wanted to just wear them home that day but I understood the importance of waiting. I wanted them to be perfect! I wanted to be so proud to wear these shoes, that everyday I would always pick that pair. I wanted them to last forever like my mother's pair seemed to. I planned to take good care of them because a pair of shoes that takes that long to make couldn't be replaced easily, and besides...no refunds or exchanges on these.
Somedays as I waited for my shoes to be customized to that perfect look, that perfect size, that perfect fit...I would walk around the house pretending they were on my feet. My husband would find me in front of the mirror...just hoping I would be able to wear them as well as my mother wore hers. We'd sit around wondering what the finished product would look like. I hoped my husband like them, and I hope he liked me in them!!
I woke one morning and the wait was nearly over. My shoes were now ready. As we got into the car, my husband and I talked about anything to keep my nervous mind off the shoes. Truth be known, I wasn't sure I was ready for them. What if I put them on and they don't fit? What if they aren't as comfortable as mother made them look?
We finally arrived and we went in and waited, and waited and waited some more! I thought they were ready. I had just about given up on getting the shoes that day when I saw someone bringing me a package. Was that my shoes? The package was smaller than expected and when I peeked inside, they didn't look exactly like I had imagined all these years...but they were beautiful, and all mine! The lady who had so carefully wrapped my shoes tried to point out a few mistakes the shoemaker had made.
Although I could see the "imperfections" I knew that the shoemaker never makes mistakes. They were customized shoes remember, made to fit me. So what if they ended up even more special. After marveling in the fine craftsmanship I suddenly realized why they took so long to make. It wasn't the shoes I was waiting on exactly, rather my feet to fill them. Just like alot of shoes, they were tight at first. I had to break them in but my mother was there to guide me, pretty soon they were the perfect fit.
I guess anyone can get a pair of these shoes afterall but not everyone's fit this good. I've slid my feet inside these shoes everyday since...just like my mother always wore hers. They are my "Mommy Shoes". All of our shoes get scuffed from time to time but it's the "soul" that's most important.
*I got emotional*
Then, I saw this:
*Double Smile...Adorable*
Quite a writer that Val!
And you know what they say..."If the shoe fits..."
Friday, May 2, 2008
Sex Before Marriage or Marriage Before Sex??
First of all, so many funny things happened today. Love Fridays, love the fact that I didn't have my pre-school monsters and when I went there, the school was closed for an extended holiday - nice of them to phone. Glowing. Headed for the Corso and hit Calzedonia for a new bathing suit (white!!??)for me and three new suits for Sofia. Had myself a good old time. Then, I met my friend for lunch and after that, I had my first group of Middle School students - the crazy foul-mouthed group. As soon as I sat down, they started insulting me and called me their new favorite word (that I like an idiot taught them) butt-ugly. I smiled, smacked em all upside the head and began my lesson.
I started with my first victim, Simone by asking him what he did yesterday. He said he went to the movies. Hmmm. I think he has a girlfriend so I began to haze him. "Simone, how much did you spend at the cinema?" His response, "15 euros." Mighty hefty for one ticket. So, who'd ya go with?? He turned flaming red. I destroyed him, especially because I noticed he was wearing a Lance Armstrong look-alike bracelet that said, "Heart." He had no chance. He's in the mustache growing like dirty weeds stage,
my voice is now deep and out of control. I have no mercy.
Then, I pretended to sneeze to see if they remembered how to say, "Bless you." And after five years of lessons, they said, "You're welcome." What is it with these Italian adolescents?? Is it SO hard to distinguish between "Bless you" and "You're Welcome??" It's like a cultural mental block that I CAN'T TOUCH!
Then, I had another Middle School class and when I asked one of the girls what her friend usually does in her free time, she responded, "She rides a book." I try so hard to remember all of the funny things they say, but I forget most of them.
Anyway, the point of this post is I don't even remember, oh yeah, sex before marriage or marriage before sex. Does anyone still wait to have sex before they get married? What would make you wait? Religion, traditional values, faith, love? Talk about stepping into the great unknown. Although, the waiting and waiting must make the wedding night a truly unforgettable experience. With two divorced parents, I was told to have as many experiences as possible before getting married (Note: that did not mean to sleep with as many people as possible, it just meant to have experiences).
How important is sex in a relationship on a scale of 1-10? Like an 11+++??
One thing that really shocked me after talking to a lot of my friends here in Grosseto is that 95% of them had a lot of sex before marrying - all with the same person they eventually married...not much else to do in the rolling Tuscan countryside,
especially during the winter. Yet, is this not the country of the Roman Catholic Church??
Maybe I just attract hobags. Just kidding-*smile* Interesting fact-many of them had a Vespa. I will say that Vespas are freaking the hottest thing in transportation I have ever seen.
I don't know what my problem is today, I need to go to bed...night, night.
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