An American Mom in Tuscany: Jordan's Cochlear Implant Story

Sweet Dreams

2008-10-09T11:26:00.002-04:00

Magic (by Shel Silverstein)

Sandra's seen a leprechaun,

Eddie touched a troll,

Laurie danced with witches once,

Charlie found some goblins' gold.

Donald heard a mermaid sing,

Susy spied an elf,

But all the magic I have known

I've had to make myself.

Abbie Needs Help...to Pay it Forward

2008-10-08T16:09:00.006-04:00

Ok. We all know that Seek Geo sleeps with a copy of Abbie's magazine cover under his pillow and that she has a thing for anal rice. We know that she is a trash-picker and a leaf-raker and oftentimes confuses words like this: "When a man says bosom, it sounds like booze."
Abbie oozes charm:
I can’t believe that one year ago today, I underwent surgery to have a cochlear implant inserted just underneath the skin of my head. Ever since that day, my life has changed in ways that I never thought. I feel so enriched by the people I have met, the sounds I have heard and the experience of discovering what I have been missing all of these years.

Abbie's take-no-shit attitude can make an anxious man fearless:

David, a newly late-deafened adult over at Five String Guitar wrote this post that truly made my day.
Nine days from surgery. I am optimistic of course, as always. Failure of any sort, is not even considered an option, as is any medical mishaps.As my cochlear buddy Abbie told me back in April, on the eve of my first surgical implant when I blogged about my worries after the surgeon outlined the circumstances that can happen (paralysis, taste disorder and death) " Not on my watch, Sir".

Abbie typed in my comments in response to my fear of the worst case.That made me feel good. I believed her then and do now. I have good people in my life with positive thoughts, wonderful advice, and amazing spirit. I like it.Little things mean a lot? No sir, little things mean EVERYTHING. I have never forgotten those words that Abbie typed in my comments, because they took away a fear, and brought a calmness and determination in me that still serves me as I get ready for my third surgery in six months.

Abbie's Plea:

A person coming from my background – knowing nothing else but living with a hearing loss feels the need to branch out and see how others cope. I had a lifetime of adjusting my eyes to associate the lip formation with words with what auditory input I had. The reason why I would like to go to the ALDAcon is because I want to educate myself on the needs and how I can contribute to empowering those that began their struggle with communication later on in life. It is no surprise to many that I have mentored several people regarding cochlear implant and most of them are late deafened. This is the one group that leaves that just tugs at my heart because I see their struggles written across their face trying to figure out how to make sense of this new dimension of life with a hearing loss.

Progress Made Thanks to the Blogosphere:

Halfway mark reached for ALDA Convention!
I am SO stoked! As you know, I am trying to raise a $1,000 dollars in ten days to attend the Association of the Late-Deafened Convention in Chicago from October 29th to November 2nd because I want to learn and educate myself on the different needs of those that are late-deafened. This past Saturday, I posted a blog asking for help and many thanks to your support, you have helped me achieve over 50% of my goal. I am literally overwhelmed and so honored to have so many of you sponsor me! Thank you is not enough for all of you who pulled through and made a donation in these tough economic times to give me a chance to experience this.

PLEASE HELP ABBIE REACH HER GOAL!!!!!!!!!!!!!!!! Visit her blog here to see how.

When an Idea Becomes a Reality: LiveLoveHear

2008-10-07T14:09:00.007-04:00

Design created by Rachel Chaikof
Karen Feeser posted the following comment on the Pediatric Cochlear Implant Circle on October 1, 2007, right in the middle of our CI Awareness Campaign Discussions:

I was thinking, we have all of these walks, runs, fundraiser ideas
to raise awareness to breast cancer, leukemia, autism, muscular dystrophy....etc...why can we not have something started or maybe
there already is and I am oblivious to it a walk or run for cochlear
implant awareness.
Karen

One year and five days later, Karen left this comment:
Well...I don't even know where to begin with telling you how amazing yesterday was. The 5k event could not have turned out any better than it did...well i am sure it could, but I tell you what, it surpassed my wildest expectations. We had 118 people turn out for the walk and
the run. Awards were given to various age groups and top overall and 2nd overall. It was the most amazing day I could have ever hoped for. I am beyond excited for this event to take place next year. I have learned a few tricks and will be even more prepared to kick some butt next year.

Thanks again to all those who supported me, cheered me on and just helped me turn the light on to organize this event. The Cochlear Implant Awareness Foundation will receive close to $1100 from this event and it was all thanks to those who were there for the cause and those who just love to run or walk. Thank you again- HUGS!!!

I SUPPOSE SHE IS *JUST* A MOM?

NO-

SHE IS A MOM...PERIOD.

And I am SO happy for you!

If you would like to make a donation please do so here. Thank you. Jodi

LOLA

2008-10-06T10:54:00.005-04:00

Aaaaaaaaaaaaaaaaaaah! I need a mental release, been way too pent up, bent outta shape, stressed to the max and PMS, so the time has finally come to post about LOLA, my lunatic cat. First, I need to say that Jordan came home from the Mercatino Dei Ragazzi, a huge charity event in Grosseto where a million kids run around selling used toys for money-Spectacular, with 35 incense sticks. He's obsessed with the odor of incense and now my neighbors are convinced I smoke marijuana.

Anyway.

Three months ago while Luca and I were in the midst of our marital crisis and the world was all wrong, I saw my kids suffering. So, when this adorable little cat popped up on our doorstep only to belong to another child, causing my kids to cry in agony, I decided to hunt for a new kitten.

Along came LOLA.

Lola was miniscule when she arrived, and she used to sleep between my legs until she would wake up at about four in the morning to torture me by biting my toes. Then, I left for Dublin for fifteen days, during which time Luca returned home and remained. *smile*

Just like any other female, Lola is such a fickle little girl. She went from sleeping with me to sleeping with Luca. Such a hobag. There is only one problem, while with me she only purred, she is kind of attached to Luca in a different way.
She
licks...boxers.

Instead of the four in the morning toe bite, she begins licking and licking and licking...Luca.
Hmm.
You can only imagine the conversations Luca and I have about this, um, little fetish of Lola's.

You see, animals are excellent therapy tools. We have always had cats that have loved Jordan. When he was super frustrated, he would come home from school, fling Lucky over his shoulder, stalk into his bedroom and cuddle with the cat, who was I have no doubt sent by God. Lucky used to sleep on Jordan's head and sit on his notebook while we did homework together. Lola has that same kid-loving disposition.

There
is
only
one
minor
problem.

Yesterday, on the way to the Mercatino Dei Ragazzi, Jordan says, "Mom...ya know what Lola did last night???"

JUST A MOM?

2008-10-05T17:00:00.011-04:00

For so many years when interacting with medical professionals, I considered myself "just" a Mom, humbled by their expertise and ability.
*I have since redefined myself*

I have been working on a project with my two favorite health professionals, my pediatrician and my cochlear implant surgeon. The project involves distributing a questionnaire based on the study:Primary Care Physicians' Knowledge, Attitudes, and Practices Related to Newborn Hearing Screening Mary Pat Moeller, PhD, Karl R. White, PhD and Lenore Shisler, MS. (Thank you to Karl White who generously granted us permission to adapt their questionnaire) I have been coordinating, convincing, placating, kissing ass and yes, even begging to ensure that this project comes to fruition. See, Italian pediatricians are lacking resources necessary to provide important information to parents of newly diagnosed deaf babies. The goal of the questionnaire would be to identify problematic areas to then provide the necessary information.

As I mentioned before in another post, my ci surgeon recently published guidelines for Newborn Hearing Screening in Tuscany based on the Year 2007 Position Statement: Principles and Guidelines for Early Hearing Detection and Intervention Programs which is perfect timing for me to insert my little self right in the debate.
*Because*
Included within the Position Statement is the following:
“The EHDI system should be family centered with infant and family rights and privacy guaranteed through informed choice, shared decision-making, and parental consent in accordance with state and federal guidelines. Families should have access to information about all intervention and treatment options and counseling regarding hearing loss.”
And, in the meantime, based on this Position Statement...

The group formerly known as ICOP has become GPOD: Global Parent Coalition of Children who are Deaf or Hard of Hearing, and we are currently putting the finishing touches on a proposal for Ferdi for the Newborn Hearing Screening Conference 2010 with the following mission statement:

The GPOD provides communication-unbiased parent perspective and guidance to early identification and intervention systems, educational systems, and support services for families with children who are deaf or hard of hearing. GPOD is an international collaboration of parent groups dedicated to promoting improved systemic protocols and practices which encourage informed choice and the empowerment of families with a deaf child throughout the world.

Note: this group is formed of "just" parents, as well. *smile*

Working with health professionals is an extremely political process, and I am slowly learning. *FTS* There is nothing "slow" about me. I will say this, in this cut-throat political situation, I will assert myself....because
i
am
not
"JUST"
a
mom...
I AM A MOM!

Just like Tammy is a MOM:

WOW! I'm a little taken aback, as Aiden's mom, right now. Let me first say, thank you to everyone for sharing their opinion - isn't it great to live in a democracy where this is allowed? Where freedom of choice is allowed? I try very hard to not place judgement, it's not my job.

Anon. - I think it's wonderful you don't have cochlear implants, if that's what you've chosen! I respect that decision and would love to hear your stories on what it's like to be Deaf. I can only imagine and would love to walk in Aiden's shoes EVERYDAY, just to KNOW, just to have some clue. I can never take away Aiden's deafness, he is who he is, and I wouldn't change him for the life of me. But I do have the opportunity to provide my baby to hear, and as his parents, it's what we choose to do; he can't make this choice, he's six months old!

I provide my daughter glasses to help her see and my son medication to help him breathe. I am so very thankful for the great minds who invented such wonderful technologies to help us along in the world today! You are right, Aiden does not have that choice RIGHT NOW whether he gets a CI or not, but neither does my daughter to wear glasses. It is my right, as his parent, to choose this for him. Aiden can choose once he's older, to not wear his CI. But think of the opposite. Think of me not providing him that choice for later on in life. Think of him being mad at me for letting that opportune time pass for him not to have the chance to learn to hear and speak. At least the day will come where he does have a choice.

Jen - You are so right - I am one lucky person to have such a beautiful and HEALTHY little boy. I've said that myself, since day one. Especially after we confirmed him being deaf. In fact, I always felt guilty grieving for his hearing loss, which, grieving for this, by the way, is very natural. Aiden has two hearing parents with no experience WHAT-SO-EVER to the Deaf world. How could we not be upset?! We were terrified when we found out about Aiden's deafness. Who isn't scared of the unknown? I never looked at it as a TRAGEDY though, never thought my world was crumbling down.

Hell, what you don't know is I had just buried my 55 yr old father 3 mths earlier after taking care of him for 2 years with dementia ... so for you to say I take things for granted?!?! You don't know me or my life, or what I've been through, so this struck me hard, very hard. I had a healthy beautiful boy with a lot of spunk, and no matter what, I felt blessed! Did I pray for a miracle -you bet. I prayed everyday that he could hear, that the dr's were wrong. But when they weren't, we were ready. I read and I researched and I still learn something new about the deaf world everyday! In fact, 6mths later, I am helping other families with this.

I am starting a support group, to let other moms know, IT'S OKAY, everything is going to be okay, no matter what route you take! I take nothing in my life for granted. NOTHING! I live day by day and thank God EVERYDAY for all that I have!!Val, Jodi & Naomi, Thank you for your continued support. It is mom's like you who have helped me in a way I hope to help others one day.

Abbie - ( BTW, Abbie is requesting assistance, click her name to see why!) You are right ... Ryan is your typical male, at 12! I have to say though, as much as he tries not to be, he's still such a mama's boy and I eat it up every chance I get!!!

You Go, Girl!

Six Month Old CI Baby and his Hearing Siblings

2008-10-03T08:26:00.006-04:00

Aiden's Mom Tammy writes a blog that chronicles her journey with six month old Aiden:
OUR JOURNEY
Our precious baby boy, Aiden, was diagnosed with profound hearing loss in both ears; he was born deaf. This site is to help me journal my feelings, keep family and friends updated on our son's journey, but more than anything, I hope our story can help ease another family's worries as so many other families have eased mine. Another chapter in our life opens ... this is our journey to and beyond cochlear implants ... our journey to let Aiden hear.

This was her letter to me regarding hearing siblings of deaf children:

Jodi:
Okay ... I sat down with my munchkins, and here's their answers to the questions (Ryan is my very laid back 12 y.o. & Kailyn is my "oh so dramatic" 8 y.o.):

Question 1 - What do you tell your friends about Aiden's deafness?

Ryan - "I don't. I don't think it's a big deal to announce it because it's just who he is."

Kailyn - "This is my baby brother, his name is Aiden and he has "earing" aids so he can hear. He keeps getting new ear molds and he has two hats so he can't grab his "earing" aids out."

Question 2 - What's the weirdest question you've ever been asked about Aiden being deaf?

Ryan - "My friends will ask if he's deaf, I tell them yep and that he's getting cochlear implants, which will help him hear, and they don't really say anything else."

Kailyn - "Friends ask me if he can hear with those things in his ears."

Question 3 - If you could change one think about your brother, or his deafness, what would it be?

Ryan - "His chubbiness." (I told him babies are supposed to be chubby) "Not like that fat little man." (I asked him if he'd change him being deaf) - "Yeah, I guess. I wish he could hear, but I know he will with cochlear implants. It doesn't bother me he's deaf."

Kailyn - "I like him the way he is, but not getting "earing" aids. They bug me with all that noise and I just don't want him to have them anymore. I wish he could hear without his "earing" aids."

I also asked them if there is anything about his deafness that bothers them (we talk about all this often):

Ryan - "It's just an inconvenience" (I got a little worried at this point and asked why) "because it's harder to mess with him and tell him I love him." (not so worried anymore) ; )
Kailyn was done at this point ...

I have to share too, the one thing Ryan was constantly worried about in the beginning was our finances. How much are the HAs, how much are the CIs, how much are all of his appts? This is part of what I'm going to talk about in my write up on my blog, because I learned that preteens worry if they're going to be taken care of. At first we thought Ryan was just curious, but after talking more and more about it, found out he was actually scared we were going to run out of money!

And now...
*Meet Aiden!!*

Make video montages at www.OneTrueMedia.com

CONGRATULATIONS VAL!!!! INTRO: I'M ALL EARS!

2008-10-01T06:23:00.006-04:00

Look out Jenny McCarthy! If there is one person, one "Mother Warrior" who has always encouraged me, provided me with necessary info and links, offered her experience and assistance unconditionally - with great love and passion...that would be VAL BLAKELY! And so, it is with great emotion and pride that I share with everyone who doesn't already know, that VAL has written a new book entitled I'M ALL EARS together with her beloved Speech Therapist Tamara Harrison. We have all seen the incredible Blakely children, a true testimony to the professionalism of Tamara.

I've had the book for about three months...*smile* (can't believe I managed to keep my big trap shut) and feel privileged to have been asked to review this inspirational project that not only tells Val's story with Gage and Brook, but which provides extremely useful information for families raising Deaf children. This was what I wrote:

I'M ALL EARS shares a family's journey in deafness- cochlear implant style and provides readers with a very personal account of difficult decisions, daily struggles and lifestyle changes. This insightful and informative book demonstrates how the cochlear implant combined with a strong family support system and creative and stimulating Auditory-Verbal Therapy has enabled the Blakely childrne to conquer a predominantly hearing world and its many challenges with glowing, yet determined smiles on their faces.

The most beautiful part of the book aside from obviously Gage and Brook is that Val and Tamara have created an important resource for parents of Deaf children by defining difficult terms, offering suggestions for quality Auditory-Verbal Therapy and providing access to support groups. I am honored that she included RALLY CAPS in that list of resources.

Click here to purchase I'M ALL EARS.

Click here to read her official blog announcement. Here is an excerpt from her blog:

I've been asked in the past to please give tissue warnings in some of my blog posts so for those of you who know us personally, this might touch your heart in the beginning so I do give a slight tissue warning for the first half of the book. I will note however that there are stories in there to make you laugh also! It's not intended to be a sad book, just a book of my travel from ignorance to advocacy on this road my children have led me on. It's been hard, it's been amazing, and it's taught me so much! I planned a perfect picnic but didn't consider the weather. Sometimes, it's just better to have your picnic despite the weather and I hope that this book will serve it's purpose...to help some family somewhere, know that they are not alone.

To view this video with closed-captioning, click here.

CONGRATULATIONS VAL AND FAMILY!!!!!!!!!

Please Ask Your Hearing Kids with DHH Siblings...

2008-09-30T07:29:00.004-04:00

Dear All,
Leeanne of Hands & Voices is preparing a study of hearing kids with DHH siblings. Please take five minutes, ask them these questions and either respond by leaving a comment or email the response to jodi@rallycaps.net You may find some answers that surprise you, or this may give you the opportunity to have a really fine heart to heart with your hearing child:

1. What do you tell your friends about your brother or sister’s deafness or hearing loss?

Sofia (6 years old): When we are at the beach, I tell other kids that he can't hear them because he doesn't wear his cochlear implant on the beach.

2. What's the weirdest question you have ever been asked about your brother or sister?

Sofia: What's that thing on his ear?

3. If you could change one thing about your sib (or your sib’s hearing loss) what would it be?

Sofia: He needs to stop annoying me and pinching me. He has to stop putting his Playstation on while I'm watching a cartoon.

Note: Since Sofia has started first grade, homework time has become a nightmare. Her favorite expression has become..."You always help Jordan, and you NEVER help me."

Hmmm.

Um, Val...your situation has me a bit perplexed. Gage and Brook are both hearing and deaf, so what's your take on this?

Mother Warriors

2008-09-29T07:52:00.006-04:00

(Don't know what happened, two posts got mixed together-anyway, this is what was supposed to come through)I know that many parents go through a mourning period when they find out their child is born deaf. They feel guilty, they feel like failures because they did not create the Perfect Child. Who is the Perfect Child? Perfect is boring. Raising Jordan amidst my friends with hearing children, I became increasingly more sensitive. My friends spoke of their child's progress, accomplishments, achievements...and I remained silent.
"Oh, my child won the Spelling Bee."
"My child got into private school."
"My child loves doing homework."
I was thinking...my son can go potty, he learned how to say the "S." So, I shared my satisfaction with my speech therapist and my son. Then, I found the Pediatric Cochlear Implant Circle and they truly understood our successes, even the smallest most insignificant success. It's so nice to be comprehended.

Naomi, one of the founders of the CI Circle and a fellow "Mother Warrior," writes a blog, and this was one of her posts:

He has no damn right to be that bright
Lovin this title and it came from a really good friend of mine and was made in reference to A.
Yeah he is a bright cookie, in spite of my parenting....afterall grown up mature responsible adults don't go around mimicking the voices of the Lego Darth Vader in the cafeteria video off the net, now do they??? well at least one does : - )

So the senior years of high school would be hard enough for any student without a hearing loss. A never does anything by halves, let's just make it even more interesting, let's see if we can have a go at the International Baccelaureate program (IB). The IB has as a component a foreign language and it is a compulsory requirement for the program.

He started Italian about 9 weeks ago. Last week was his first oral assessment. In true A fashion he put the time in preparing for it and wrote it all out. With spaces between lines it was about a page of writing. He had to introduce himself, his address, who is in the family, pets in the family and something about each member of the family - me he chose the word "bizarro" - yep and I love him too!!!

He cruises into my office at the end of the day and I asked him how the Italian oral went. He gets this flustered look on his face, runs his hands through his hair - at which point I am about to hyperventilate worrying about him - just as I am about to tip over the edge, this huge grin crosses his face and he jumps in the air, arms thrown upwards and a "Mum I aced it!"...

On the Oprah show, Jenny McCarthy said, "You've got to feel it to heal it," not an easy task...but such true words. As Mother Warriors we are mothers who are eternal optimists, who see the positive in every single experience we live with our kids...we grow with them.

Touched

2008-09-26T14:18:00.003-04:00

Jordan Has a Girlfriend

2008-09-25T11:35:00.010-04:00

Way too much drama in the comments section of yesterday's post, you know who you are (*smile*) so I'm taking a break to talk about Jordan.

On Thursdays he has his guitar lesson after school with an hour break for lunch, so I always take him for pizza and peach tea to his favorite pizzeria in the center of Grosseto. We spend a quality hour of Mamma - growing boy time and discuss "the latest." "The latest" is that Jordan has a girlfriend. She is adorable, her name is Alessia. There is only one problem, he refuses to discuss his new girlfriend with his meddling mother...me.

Our lunch conversation:

Me: So, you have a girlfriend...but really?

Jordan:

Me: Jordan, come on, tell me something...have you kissed her?

Jordan:

Me: Jordan, do you remember when you were DYING to ask Benedetta to be your girlfriend and I helped you find the words to profess your undying love??? Give it up to your Mamma!

Jordan:

Me: I don't believe that she's your girlfriend. I don't believe you, you always tell me everything and suddenly you're quiet. I DON'T BELIEVE YOU! *attempting reverse psychology*

Jordan: Mom, I'm a "guy" now, I can't discuss certain things with you anymore.

Me: (falling off of chair) Uh, okay...for now.

Breaking news:

Luca and I just had an emergency meeting locked in the bathroom where he handed me a series of crumpled passed notes. Last week, loverboy had asked Martina to be his girlfriend and she had said no.

Note #1:Martina, for now I need to leave you, sooner or later we will be boyfriend and girlfriend, but for now I must ask another girl to be my girlfriend. (he drew a pair of red lips on the note-what a stallion)

Marty: WHO?

Note #2: Alessia

Marty: NO!

Jordan: It's okay, I just said I was going to try.

Note#3: It's just for now, Marty.

Marty: Okay, but if you want to hold my hand, you can.

Note#4: WHAT??!!! You want me to hold your hand!!?

Marty: If you want to hold my hand you can.

Jordan: Ok

Note#4: (for Alessia with a heart drawn on it) Well, have you decided? You are beautiful.

Alessia: she x-d the Yes.

Done Deal.

(Note from a pissed off Mamma: I guess this type of stuff has been shifted to Father-Son instead of Mamma-Son *steaming*)

I couldn't decide between the two *smile*

Disney Pass: From the Mouth of a Child

2008-09-24T03:16:00.004-04:00

Thank you to the mother who posted this on the Pediatric Cochlear Implant Circle...

Posted on Mon, April 28, 2008
Encountering someone different
By Dan Gottlieb
What is your first instinct when you see someone who is disfigured, deformed or just plain different? To look away? To react by rote?

Many years ago, waiting to meet a colleague, I was sitting in the lobby of Hahnemann Hospital, my briefcase on my lap, drinking a cup of coffee - when a woman in an obvious hurry walked by and put a dollar in my cup! She clearly didn't see a man in a wheelchair. She saw someone who was "different," and responded quickly.

I tell this story frequently because it teaches us so much about ourselves. Our brains are hardwired to react instantly to members of our species who don't look or behave the way they "should." When we encounter someone with a disfigured body or acting in ways that don't fit the expected norm, we feel distress.

It happens so fast that we don't even know what we're feeling. Our first instinct, however, is to find a way to diminish our distress. That's why, when I go into a restaurant, the hostess will often ask my companion, "Where would he like to sit?" The hostess makes eye contact with my companion in order to lessen the stress of facing someone who is "different."

Sometimes our reaction to the distress takes the form of anger or harsh judgment. Parents of children on the autism spectrum (this happened frequently to me with Jordan) tell me that when their child becomes agitated in a public place, they frequently get critical looks or even patronizing comments. The reason: Affixing blame can help diminish distress caused by the unusual behavior of others. It makes the world feel more orderly.

There is a price, however, and not only for the person who is judged or ignored. Stress is a symptom; diminishing it by judging, criticizing or ignoring others is merely a form of symptom relief, like having a stiff drink.

So what can we do? Since stress is hardwired, allow yourself to simply experience the stressful feelings without trying to avoid them. Make eye contact if you can. (This gets easier with practice, as anyone who works with disabled people can tell you.)

I have always believed that if you look in someone's eyes, you can find their humanity - and in that process, you can learn more about your own. If that woman in Hahnemann's lobby had been able to look into my eyes, she would have seen a fellow human, a quadriplegic who in fact has a great deal in common with her.

And one other thing about those of us who look or act different. My grandson Sam, who is on the autism spectrum, is almost 8 years old. He is generally doing well in first grade but still struggles in some areas. Recently he had some classwork that he didn't understand. Embarrassed about his difficulty, he took his book home without asking his teacher. When he spoke to his mother, not only was he embarrassed about not understanding the homework, he also felt guilty about taking the book home.

In order to assuage Sam's guilt, his mom explained: "Sam, they have a special piece of paper at school that says when you have trouble with your work, you can ask the teacher and she will give you extra help. And if you still have trouble, she will call me and I will help also."

But Sam didn't feel better. He began to cry: "Mommy, I don't want a special piece of paper."

Sam speaks for most everyone who is "different." None of us really wants that special piece of paper.

Mishka Outraged! Deafness and Disability: The Disney Pass

2008-09-23T04:03:00.006-04:00

Paotie - hold onto your pants! I have never, in the eight months that I've been posting on deafread.com read Mishka get so passionate about an issue. She takes great pride in her ability to remain objective. The idea of Deaf individuals taking advantage of the system by using handicapped parking spaces or a Disney disability pass to avoid waiting in lines for rides REALLY pissed her off. Such a refreshing change.

Here she goes:

I was raised to be equal to my peers. I wasn't treated differently because I couldn't hear.
No, I will not use a pass because I am deaf. In fact, I will get infuriated if I see a healthy able-bodied deaf person using a pass to cut short the lines to the rides.

You see, I am also physically disabled. I remember one time Deaf people being surprised that I have a pass and demanded why I have it. They didn't believe me when I said I am physically disabled (talk about an invisible disability)

Here in MD, the Deaf Community tried to convince the State Assembly to pass a law permitting Deaf people to use the handicapped parking spots. When I found out, I was outraged. They can walk. Their excuse is that they cannot look back. Oh, really? Bullshit. You can use my eyes around and use common sense. I call that taking advantage of hearing people's ignorance to abuse the system.
Because I know what it is like to be Deaf and what it feels like to be Deaf and physically handicapped. There is a very BIG difference.

Yes, if I see a Deaf person abusing the handicapped parking lot or using the pass for rides, I will confront them. Using the pass for shows is a different story because they do need good seats to hear the performances.

Rides, hell no way!

As you can see, I feel very strong about this.

::::Stepping off my soapbox::::

There's more...

Well, legally deaf people are disabled, but they are NOT physically disabled that they wouldn't handle long waits. Shows and movies, I totally can relate to that because the Deaf people need the front seats to be fully accommodated. But regular rides? Scoff. Handicapped Parking? Scoff. I would be embarrassed if I abuse the system if I don't need itIt's not the way I was raised.. taking advantage of a system at the expense of others. Remember I said the physically handicapped people paid a price afterwards because they were forced to wait longer when hearing people saw how healthy deaf people were abusing the passes. They are not stupid and naturally they gave the employees a lot of grief. There are consequences when there are abuses of the system.

Hmm. That Mishka is one crazy bitch and I agree with her 100%.

MOM: Is DEAFNESS a DISABILITY?

2008-09-22T04:43:00.007-04:00

With all of the discussions generated by the posts on Ethics and a debate that has ensued on the Pediatric Cochlear Implant Circle regarding "to accept or not to accept a Disney Pass for children with Disability" on behalf of a deaf child with a ci, I am curious to know the adult Deaf perspective on such issues. While checking out Dianrez's site for one of my posts, I found this:

Why do we say we are not disabled?
How is it that we do not regard ourselves as disabled? Is it because of the way we were raised, to be not different from other people? Is it because our difference is invisible and outwardly we look and move about like everyone else? What is the origin of this "not disabled" feeling? This attitude is so pervasive that we object to any surgery or expensive devices as less-than-successful attempts to "fix" us to meet Hearing standards.

The majority of the world considers us disabled, often to our consternation. When we say we want deaf children born to us, the world hollers in indignation, "HOW DARE YOU!?" They consider it extreme child abuse. Mostly, though, Hearing people take no notice and therefore omit making room for Deaf people in their communities. In an earlier time, people would shunt aside Deaf citizens, saying with impunity, "Sorry, we have no provisions for hearing handicapped people." As a child, I was taught, "it's a hearing world and you must adapt to them, not expect them to adapt to you." We were considered selfish and immature for thinking otherwise.

Yet, we gratefully accept special considerations such as schools for the deaf, colleges dedicated to deaf students, interpreters, government assistance, and electronic devices, among others. In seeking jobs, we willingly accept any extra help that comes our way. In public areas such as airports and meetings with public servants i.e. police, we tread with unusual care, mindful of bad experiences that our people had. Despite what we say, inwardly we seem to accept that we are different and that it means accepting help, if somewhat reluctantly.These special accommodations, some of which were legislated, are lifesavers for most of us.

Can we refuse them? Certainly we can, but what purpose does it accomplish? Will it cause people to finally believe we are not disabled as we carry on with pad and pencil, less than perfect speech, expensive aids and struggle to survive at the bottom of the employment applications pile? If we continue to insist we are not disabled, all that will happen is politicians happy to cut budgets and voters not noticing or caring.

Have those of you with deaf children or even you, yourselves ever used a "Disability Pass" to have quicker access to rides at a Disney World or other amusement park? Things got a bit heated up as parents asserted motives for using or not using the pass. Parents whose children have other disabilities in addition to deafness stated that they would never request a pass "only" for deafness. Another mother stated that she absolutely does not consider deafness a disability.

I posted this:
Re: Disney and Ethics: Pass or no PassI've been following some of the thread kind of in dismay. Deafnessis known as the "invisible" disability because it is in fact invisible. There are many ramifications associated with deafness that we as parents deal with on a daily basis. We as parents make decisions every single day to try to make the lives of our kids easier. This is not a black and white issue, this is a gray issue.

If my kid goes to speech therapy four times a week and suffers sitting in that high chair from the time he is twelve months of ageand we choose to take a family vacation to Disney to reward him andourselves for all of the fatigue and stress and work behind his "invisible" disability, I probably would consider getting that pass to avoid one more frustration in his life. But I'm not sure. Someone once said to me that when considering disabilities if a person sees another child with a physical disability, they go out of their way (if you are lucky) to help that person. How many times have you seen people frustrated or irritated by your child screaming or asking someone to repeat something that they missed? Deafness is a disability. Each child is different and each family's situation is different.Would I have thought twice about requesting a pass when Jordan was a 3 year old frustrated child? Yes. Would I request the pass now? No. Would I judge another parent for taking that pass? Never.

Another Mother wrote in response to yet another mother:

I agree that Disney having the pass is definitely a good thing. I don't think that anyone has said that it is not. For your child, it clearly is a need. For mine, though, it was not. I think the point that I and others have tried to make is that it isn't a perk we should take if we don't truly need it because it is unfair to those who truly do need it and because it sends the wrong message to our kids.

It's all in the message...how do we want our kids to view their Deafness?

FYI:
Six Flags changes its line policy for disabled patrons
Sept. 19, 2007
Six Flags Inc. has stopped allowing disabled patrons to skip to the front ofride lines and is now requiring them to get a boarding time from anattendant and return then, as any patron can do with the amusement parkcompany's "Flash Pass."The new policy took effect Sept. 7 and applies to all 21 Six Flags theme andwater parks, including Hurricane Harbor, also in Arlington, said Kendell Kelton, a Six Flags Over Texas spokeswoman.The policy was prompted by abuses, including patrons who feigned disability and others with disabilities who gave wrist bands allowing them to move to the front of lines to others who are not disabled, she said."We would get complaints from people in line or our employees," Kelton said.The change made for a rocky visit to the park Saturday for Joey Miller of Burleson, mother of Noah, 7, and Mallorie, 9. Miller said that her children are autistic and that Mallorie also has epilepsy. She said she bought season passes this year and took her children to the park eight or nine times this summer. "It is the only thing we found that they could do out in the community that brought some joy into their lives," Miller said.

Miller said she learned of the new policy when she arrived at Six Flags withher two children, two therapists and a niece. She said they had misgivings but decided to give the system a try. She said they went to a ride, booked a time to return and then left. But that didn't make sense to her daughter, Miller said. The girl threw herself on the ground and bit her therapist, Miller said."My children don't understand time," she said. "The things that are reasonable to us make no sense to them. Anything more than five or 10 minutes can be a screaming meltdown for my kids.""I knew we couldn't go through this on every ride. The stress could bring on a seizure for my daughter," Miller said. Park officials, however, said they hope the extra step -- having to make an appointment -- will cut down on cheaters and be fairer for everyone.

The Flash Pass option is essentially a reservation. Guests wait as long as everyone else is waiting, but not in line. Guests can leave and then comeback and get directly on the ride. Similarly, Disney theme parks offer a "FastPass." Most rides and attractionshave handicapped access, but in most cases guests with disabilities have towait in line like everybody else, said Andrea Finger, a Disney theme parks spokeswoman. Disney parks, however, may provide different accommodations depending on thedisability of their guests, she said.Policy for disabled park patrons Six Flags Inc. no longer allows park patrons with disabilities to move to the front of ride lines. Under the revised policy, guests with disabilities should seek a Flash Pass reservation and return to the ride at that time to avoid waiting in line.

Evolution of a Life...Mine

2008-09-21T07:07:00.008-04:00

One year and a half ago, my life consisted in this:
1. Wake up, dress children, scream for twenty minutes insisting on the tedious brushing of the teeth, cereal and milk them and send them on their way;
2. Cappuccino with Sonia and a cigarette;
3. Arrive at the pre-school, Mary Poppins bag slung over shoulder, two hours of singing and dancing the Hokey Pokey;
4. Run home to prepare pasta;
5. Sprawl out on sofa to watch the Bold and the Beautiful in Italian, while eating ice-cream with a spoon out of the container;
6. Begin afternoon lessons with frustrated Italian students, share my worldly experiences with them to assist them in the development of some sort of larger view of life and assist them in chewing the English Tongue;
7. Prepare dinner, something inedible, obviously;
8. Scream at children to take showers and yell at husband for some reason or another;
9. Lay down next to husband to watch television program of the day...hopefully Gray's Anatomy, House, Lost or Medium;
10. At the end of the program, I look at husband, he looks at me. Sex.

Routine. Again and again and again and again and again...day after day after day after day after day.
B
O
R
I
N
G
.

I have been complaining about being in limbo for the past six months, but I prefer the limbo condition to the routine. I haven't watched a television program in nine months, I've been on the computer writing, meeting people, helping people, finding my way. I have cried, suffered, laughed, danced, learned and finally begun reading during this period. Reading. I never had time to take a freaking shower. That's okay, it's part of raising children. But now, after ten years of dedicating myself 100% to my kids and family, I take a thirty minute shower, feel that water running over my naked body and have found a little bit of peace.

Shit.

I have decided to hang up the Mary Poppins bag and concentrate on doing something I like that will help other people and their children. (Note: I haven't started getting paid for this endeavor so feel free to start clicking on my google ads *smile*) I am determined to become a parent advocate for Newborn Hearing Screening in Tuscany.

I have plans. And another thing, I'm moving forward on my second book...been procrastinating too long.

I can't be a good wife, mother or daughter if I am not a good Jodi.

I have lived as a reflection of those who surround me. Sick of that.

Schopenhauer's Porcupines
A group of porcupines, on a cold day, huddle closely together to protect themselves with their body heat. In the beginning they feel good, but after a little bit of time they start to feel the spines of the others, so they have to back away to avoid the pain. Then that need for heat causes them to huddle closer once again, only to separate again because of those spines. In this way the porcupines are continuously pushed back and forth between two evils.

The defects, habits, behaviors and needs of others are the spines, everyone has his or her infamous baggage. Some porcupines, however, are able to produce a great deal of internal heating. These are able to find just the right distance from the others even to the point of remaining alone.

I don't want to need the heat of another person, I would like to generate my own.

Any idea what's on tv tonight?
I
have
no
clue.

Man With Usher's Syndrome Travels With Deaf Teens: Destination Costa Rica

2008-09-20T13:02:00.005-04:00

Hello,

I wanted to share this exciting new project with you and see if you would be
willing to forward this on to educational people or any students that you
may know across the country.

This program is amazing and changes kids lives. I am a "Lead The Way"
mentor that goes with the kids and helps them on their adventures and life
journey.

The model is proven but it is the first hearing impaired/deaf group we have
taken. We do not have a lot of contacts in the hearing impaired and deaf
community across the country to make kids aware of this opportunity. Since
you live in this world and have access to high school students I am coming
to ask you for help in getting the word out.

Simply sending the attachment flyer and/or posting it somewhere is all that
is required. The flyer is self-explanatory as to next steps.

My name is Bill Barkeley and I am deaf-blind with Usher's Syndrome Type 2.
email: billsmessage@comcast.net

Costa Rica is home to some of most spectacular and accessible rainforests in the world. From parrots to howler monkeys, poison dart frogs to tree sloths, its mountain and coastal ecosystems host amazing diversity. In this Leading the Way program, a combination of high school students who are hard of hearing, deaf and hearing, will learn field science techniques,delve into cultural studies and work hand-in-hand with Costa Rican students on a service project. Along the way, they study ecotourism and learn about sustainability and fair trade issues. In the
process, they build the independence, interpersonal skills, and attitudes that empower students to become leaders in their communities. Through this Leading the Way adventure, you’ll also help raise awareness in your communities and abroad about the culture of deaf and hard of hearing communities. The Global Explorers Leading the Way Program has been featured on ABC Nightline, the Travel Channel and CBS Sunday Morning.

Lead
Step outside your comfort zone as you build your own leadership skills and interact
with students with and without disabilities.

Learn
Explore new cultures, understand global conservation issues, engage in community service and step up to become a responsible global citizen.

Live
Experience the joy of travel and discover the power that you have to make a difference in the world.

Important Details

Application Deadline: November 1, 2008
Application Process:
We seek high school students who are deaf or hard of hearing. You will be joined by a group of hearing students who have been learning sign language for the past year. To apply, contact 877-627-1425 or leadingtheway@globalexplorers.org and ask for an application to the Leading the Way Costa Rica 2009 Program. Learn more at
www.globalexplorers.org by clicking on Costa Rica or reading about Leading the Way.

Nominate a Student: Contact us with the details and we’ll follow up with the student.
Price: $1,995 (We FUNDRAISE with you!)
Travel Dates: Spring 2009

The Global Explorers Experience
If a single trip could change your life, would you take it?

Nothin' Sweet About Me...Today

2008-09-19T09:23:00.004-04:00

There is nothing worse than being in a pissy mood when you aren't pms or raggin' it, when everything in your life is starting to come together, when your kids are healthy, thriving, playing and learning. I can't exactly identify the source of my mood, I'm just feeling restless. I've been reading a book in Italian, maybe that's the source of my agony. My friend Rosy handed it off to me, told me to read it, that I might find it interesting.

What is interesting is that I've managed to find the time to read. God, I used to devour a book a day, reading by nightlight until I finished it, determined to get to that last page. Don't quite know how it happened, but suddenly, taking a shower became a luxury.

Since my little thirty-something crisis began, I've managed to calm down quite a bit and I'm finding a new road that needs traveling, one that I am determined to travel. So anyway, I'm reading this book by a guy named Fabio Volo (really funny parts...talks often about how and why men spend SO MUCH TIME IN THE BATHROOM - Note: I have removed all magazines from the bathrooms and I'm seriously considering adding a timer, as well. Things are really bad, because even Jordan at twelve has increased his potty time to about twenty minutes a movement)called "Un Posto Nel Mondo" - A Place in the World. I am still freaking trying to find mine. Anyway, one of the parts that smacked me upside the head was this:
Porta itineris dicitur longissima esse (latin): "The door is the longest part of the journey" meaning the first step is the most difficult to take. I've actually managed to get my hand on the doorknob, turn it and take a peek. So far, so good.

My world is a much better place when it's upside down...been lookin' at things right-side up for far too long.

Back to School...

2008-09-17T11:09:00.003-04:00

Sofia Madyson started First Grade three days ago...

Getting ready to leave for the big day!

Do I really have to carry this HUGE backpack?

Almost ready to go into that big, scary school!

I'm in!...but I'm kinda skeptical 'bout this whole homework thing.

Got my best friend Federica right here next to me!

Just a kiss to Babbo...

And I'm ready to Rock-n-Roll!

Hmmm. Think Jordan's ready for his second year of Middle School?

Ummm.

...I think he'll do just fine *smile*

And...Once upon a time...a LOOOOOOOOONG time ago:

My first grade class! OMG.

Ethics and Deafness: Dianrez Weighs In

2008-09-16T05:30:00.003-04:00

Dianrez asked some thought-provoking questions:

Take the child who was born deaf and admire how physically perfect he is. He runs, skips, analyzes, critically examines, laughs and cries. What, you say he is not perfect? Because he can't hear?

Me: Why shouldn't he ALSO be able to hear?

Take your own motives. You want to give him what you already have and hold precious...the ability to hear and communicate. What, you think he won't be able to do so otherwise?

Me: Without his amplification he would not have been able to communicate with his peers...or hear.

Isn't a different method of "hearing" and communicating just as good? Why or why not? Be aware that your own prejudices are coloring your thoughts.

Me: There is no different literal meaning of "hearing" - you hear or you do not. Figuratively speaking, I could "go there," but I'm focusing on the literal. Additional methods of communicating are always welcome. I am not prejudice in regard to deafness, I treat my child as an individual and address his personality and needs.

Take the child's own motives. Will he appreciate the artificial hearing, an imperfect and incomplete method of communication, being surgically implanted with an unknown level of risk and unknown future of complications? Or will he appreciate being cherished as he is, healthy and Deaf, and given all the educational advantages that you would give him anyway using other methods?

Me: I cannot comment on a new mother's situation without knowing about her family or the specific child. Given where the technology is at this point in regard to the ABI, I would have to really be convinced to have that operation performed on my child. In regard to our experience with Jordan, he has always "heard artificially," has only complained when the batteries die and is utterly cherished for the person he is...healthy, Deaf, American, Italian, big brother, beach-volleyball player, stubborn adolescent middle school student.

Will he appreciate a possibly marginal relationship with the hearing world, always a little bit off in timing and comprehension in many situations, and/or will he also enjoy the rich and emotionally satisfying interaction with other Deaf people?

Me: He doesn't "appreciate" his relationship with the hearing world, because it is all he has ever known. We take many things for granted. He enjoys rich and satisfying interactions with other deaf individuals all of whom are amplified and speak. One day, I am sure he will learn sign language and explore the Deaf community, that is not our reality at the current time.

Will he end up a poster child for surgery, forever justifying and demonstrating its benefits; will he become a fully featured hearing person with no thought to the upkeep, maintenance and surgical replacements he will have to go through? Will he have time and energy left over to become a whole person in himself?

Me: He is already a "poster child" of his own free will, he doesn't need me to express his thoughts...he has a voice of his own. And people do not need me to translate his words any longer. We'll deal with the surgical replacements when the time comes, no one said this was an easy process. Is anyone ever really a whole person...I'm still searching for me - I think that's what makes life a continual growth process.

In giving him a gift with many qualifications, are you actually trying to impose an idealized version of the child you wanted, or a miniature version of yourself? Is it so hard to accept him for the way he was born, an intelligent Deaf child with huge unexplored potential?

Me: *smile* God forbid that I create a mini-me. If you limit his ability to hear and receive the greatest number of messages possible (many of which are received auditorily), you limit unexplored potential.

These questions may seem harsh, but consider that the teenager you will have may ask them. Certainly most Deaf people think these, especially after they are given aids or surgery by the people in their families.

Some parents will just dismiss this and merrily go on, confident that their research and calculations of the pitfalls and risks are correct...after all, what do deaf people know about the hearing world?

Me: Rhetorical question?

Indeed, what do you know about the deaf child himself? What do you know of his world after he grows up?

Me: I only know my deaf child and he's teaching me more and more on a day to day basis. I will always be a part of his world - I'm a meddling mamma.

Personally, I have found myself moderating my opinions on surgical treatment of deaf children with the increasingly vocal parent and implantee community coming to the forefront in recent months.

Me: This gives me great pleasure! *smile*

Then an article comes up that talks about brain surgery and I wonder again about the extent to which people will go to in order to achieve their ideal child.

Me: I agree 100% (It took me the whole comment to get here, but I agree)
However...a parent has the right to choose.