Making the System Just a Little Bit Better

 

Amy Cohen Effron left the following comment on my post "To Implant or Not To Implant a Child Who Has Never Been Amplified:"

Same here, and our challenge still lies:

How can we effectively communicate to the parents that their 'expectations' are unrealistic, and how can we help the parents to embrace the child's unique differences?

It happens a lot. Research done by CDC in 2006 indicate that approximately 46 percent of infants who were referred for audiological evaluation did not follow up or not having a formal documentation of their hearing loss.

Therefore, the time is lost on this child.

Because of what reason?

I can speculate few things:

1. Economic reasons (insurance coverage for audiological evaluation, or transportation to the clinic?)

2. Shock? Denial? Grief processes is not been followed up?

3. Lack of resources in that area?

4. Fear of unknown?

Then with this lack of follow up,the child will lag with their language development by age of 3 to 5, and it's harder when a child enrolls in school.

Then by that time, get implanted between 5 to 7 years old, would that help?

I don't think so.

Maybe parents are afraid with the concept of implanting 6 month old infant? This procedure does have some risks, no matter benefits may outweights risks.

It is very costly. Not many parents have health insurance, and it becomes an unfair advantage.

EXCEPT...

if these parents are able to follow up with that for whatever reason.

I pray hard that these parents are willing to take a free class on Baby Signs for their child. That is what American Sign Language can be used for the first few years as a 'safety-net' in case if this child cannot get an implant for whatever reasons.

Can we agree to see this way? Sign language? ASL (or other country's sign language) is not a dirty word anymore. It is a research-based valuable approach . Not an alternative, it is a viable approach too.

Best,
Amy Cohen Efron

Karen Mayes left this comment on the post "Mother Fights System to Get Help For Deaf Son:"

Oh boy... I see the hospitals need to develop resources (information sources, unbiased counseling, etc.) in place for any newborns, so that the parents would have information in hand, feel they are not alone and lost.

Anonymous left this comment:

And EVERYONE, especially doctors, audiologists, speech therapists, parents, etc., need to know that deafness does not always mean zero hearing, speech, or communication ability. Within our community is a lot of diversity in residual hearing, use of amplification, speech ability, signing ability, cultural identity, life experiences, cognitive functioning, and personality types.


We need to "Fix" so many things about the process to make it just a little bit better for the families now that the Medical Professionals recognize the importance of our role in rendering their job even more successful.

Surprise!(Thanks, Ferdi *smile*)...I have been asked to be part of the Steering Committee for the NHS 2010 Conference. My responsibility as "Ambassador" will be that of representing the importance of the collaboration between Families and Medical Professionals at the various stages of the families' journeys in Deafness from Newborn Hearing Screening Intervention Strategies, Diagnosis, etc. I will be sure to emphasize the need for quality resources...actually I may even be creating a few resources here in Tuscany...but that's another issue. Aboveall, however, I will act as a go-between for the International Coalition of Parents (ICOP) that is currently forming...lots of exciting things are happening.

PS. HAPPY FOURTH OF JULY TO ALLLLLLLLLLLLLL...AND HAPPY BIRTHDAY NIKI!
CHECK OUT THIS VIDEO THAT A "WANDERFUL" FRIEND SENT: IT'S SOOOOOOO AMERICAN!

You're Under Arrest...For Being a Kid

You know...nothing shocks me anymore at this point. The police just showed up at my house because our lunatic neighbor called to complain. This lunatic is certifiable. She curses at the kids, throws detergent from her terrace as well as water and tries to bully the...children. About a year ago, Luca had "a conversation" with her husband and they stopped their terrorist behavior. I had my own little "conversation" with her, when she dropped a bucket of water from her terrace that just missed Jordan and his 20,000 dollar ci processor. She got the "Isaaco hose treatment" as well.

Jordan, Sofia and the neighborhood kids were outside having a water battle in the 105° heat, you know, being kids. (I'd like to go to the beach, but I'm stuck in the house waiting for the arrival of the newest member of our family - baby kitten "Lola..." who was supposed to be calico Wendy, but she was too little - Tragedy-luckily Lola is on her way) The lunatic stepped onto her terrace, threw a bucket of water on the kids and started cursing. Everyone agreed that they would start playing outside again at 4:00 pm. to be considerate.

As I was sitting here sweating my butt off, Simone and Isaaco ran into the house to announce the arrival of the Police. I am in a period of no tolerance. I walked outside where I saw this poor Police officer in a stifling hot car with no air-conditioning waiting for his partner who went to speak to the lunatic.

I asked if by chance there was a law that prohibitted children from playing, having fun, being kids at 3:00pm on a hot as butt day....you know, I am AMERICAN, I may have missed something. He said, "No, there's no law, but perhaps I should try to keep the kids a little more under control."

I said, "Nope."

Um. I refuse to tell my kids who are playing and being kids to control themselves at 3 o'clock in the middle of the day. I refuse.

Then, his partner came downstairs after talking to the lunatic and tried to tell me the same thing. I refused again. Geeze, someone has to protect the rights of our kids to be kids in a world of uptight adults...

The Police officers shook my hands, smiled and said, "Have a nice day."
I replied, smiling of course, "Same to you, Officers."

To Implant or Not To Implant a Child Who Has Never Been Amplified

Do you or do you not give the okay for a cochlear implant to a child over age 7 who has never been exposed to any form of amplification? Good question. My answer: NO. I spoke to an audiologist at the Gala Dinner of the NHS 2008 Conference and her answer was a resounding "Maybe." The gentleman sitting next to me, who worked for Advanced Bionics agreed with me.

We were discussing the case of a fourteen year old boy who really wanted a cochlear implant. He had excellent speechreading skills and signed, but had never worn hearing aids. His parents and this child, who really wanted a ci, approached this audiologist. Their reasoning for requesting the ci was not because they believed it would be an "instant fix," rather, the boy wanted to be exposed to sound. He wanted to know the "sound of sound." He wanted to be aware of background noise in the street, in restaurants: he wanted to "hear" music.

The audiologist assured me that the parents were provided with reasonable expectations, resources were provided and they were told again and again that their son would not acquire speech as he had never had access to the spoken word prior to the ci. I asked her if the parents had been given the contact information of other parents who had lived the same experience. She said, "No."

The parents told the audiologist again and again that they did not expect their child to speak...they were not expecting a "miracle."

I looked at the audiologist skeptically. Implanting a child who has never heard at age 14 will only be a delusion for that child and the family. That family, no matter how many pamphlets or how many doctors tell them that child will not speak...HOPES that their child will speak or they would NEVER go ahead with implantation on a fourteen year old Deaf child who signs.

The child received a cochlear implant.

Apparently, although the child is unable to decipher sentences and cannot speak, the child says that the ci assists him in speechreading and provides him with a certain tranquility with regard to environmental cues.

And the parents...???
They would like to know why their child still isn't speaking.

*WTF* Pissed Off...Again!

I have been somewhat absent for a couple of weeks, so I just started catching up on my blogs. Christina posted this, and here is what Jean left as a link on her blog. It could be the 105°heat and 100% humidity, or I might just be rightfully PISSED OFF at this little article...

Slow Deaf Child
June 29, 2006

Deaf Children = Wild Animals?: You’ve probably seen those yellow signs by the roadside that announce “SLOW Deaf Child” or “Caution: Deaf Child Area”. Are these signs really necessary? Deer, cows, and ducks may occasionally have their own signs, but do Deaf children need them? Deaf children are not wild animals. They can be taught how to play outside and cross the street safely. The problem is not that they are Deaf. The real problem is society - the attitude of parents, caretakers, and even some schools. They may believe that Deaf children need special treatment. They may lack fluent signing skills, making it difficult for them to teach and discipline their Deaf children. Or they may simply be too lazy to make an effort to teach about street safety. Any children - Deaf or hearing - who haven’t been taught to stay out of the street, should not be outside unsupervised in the first place. Putting up signs like these does nothing but spread the idea that Deaf children are disabled, helpless, or lacking intelligence. A far better solution is to teach Deaf children how to be independent and self-reliant, both of which will do a whole lot more for their self-esteem than a yellow sign.

*Note: the Italian word for this is "CAZZZZZZATE!"*
*The proper term in English would be "BULLSHIT!"* (*SMILE*)

This was Christina's reply to Jean's Blog:
Jean-I'm not sure if that blog link you sent me was meant to accuse me of being a lazy parent who lacks sufficient parenting skills to manage my kid. If nothing else, I hope these signs will help my neighbors in a very busy neighborhood be aware that there is a little boy on a trike that can't hear as well as the rest of their kids. We live in an area where people honk their horn as they back out. My son can't hear that. I do believe that my child has a disability, and I do everything in my power to make his life easier. His safety is always first on my mind. While he is NOT a wild animal, he is a toddler. A deaf toddler, who needs all the help he can get right now.

Then...Christina posted this:

Enough is Enough
This blog was always intended as a place to share my ups and downs as a hearing parent to a deaf child. It was designed to be a spot to highlight our journey, pass along tips and resources, and to just be a place where I could share the beautiful moments that I share with my son. I've met some amazing people, and formed some lifelong friendships through this blog. It has been a blessing in my life.

This blog was NOT designed to become a forum for the Deaf Community to ridicule and judge my decisions. Over the months, I received comments from people accusing me of raping my child by giving him a Cochlear Implant. My communication methods were judged. The choices I made, the things that I said, EVERYTHING was judged. Judged by a community that I so desperately want to be a part of and understand. In my post today about the Deaf Child signs that are being placed, I was pretty much accused of being a lazy parent relying on signs for my kids safety. It even accused me of treating my kid like a wild animal.

Congratulations, Deaf Community. You've just pushed another person away.

While I know that the entire Deaf Community is not like this, there are a few vocal and loud folks who always seem to find a way to rain on a Mom's parade. Who feel it's their place to tell a hearing parent how to raise their child. Who feel that somehow, they could do a better job than me. I've sucked it up, I've taken it all in stride. Until today.

Comments that were left on my blog today make me sick. They show just how divided the Deaf Community really is.

There's only so much of this I can take. I'll be moderating my comments for now on. I don't want this joyful site to turn into a hate-filled place.


*WTF??*

Mother Fights System to Get Help For Deaf Son

Mother Fights System to Get Help For Deaf Son
By Brian Walzel
Editor
Published in the Tomball Magnolia TRIBUNE


The hours after a baby is born are supposed to be filled with happiness and elation, not shock and disbelief. Babies should be crying in their mother’s arms, not being run through a battery of tests. But that was recently the case for a local mother and her husband.


Luke Hrncir will undergo a procedure July 13 to install cochlear implants in the hopes that one day he will be able to hear and speak.

Less than 24 hours after Laryssa Korduba’s and husband Matt Hrncir’s first child, Luke, was born, it was discovered their new baby couldn’t hear and was ruled “profoundly deaf.”

It didn’t make sense to Korduba. Both she and her husband were healthy, there were no signs of abnormalities during her pregnancy.

“When a baby is born, the first question is, ‘Does it have 10 fingers and 10 toes?’ No one asks if it can hear,” Korduba said. “We didn’t know what to do next.”

Emotionally devastated, confused and distraught, the new parents left the hospital with their new child, but with very little direction and instruction as to what to do or where to go next.

“It’s a horrible thing to happen to new parents,” she said. “They sent us home with nothing. It was exceptionally scary.”

Over the next few weeks, as Luke failed a series of hearing tests, Korduba took it upon herself to find the help her son needed.

“My instinct was to figure out a plan,” she said. “People don’t realize the importance of getting help so early.”

After searching through the maze of the Internet, and finding several dead ends, Korduba and her husband discovered a non-profit organization in Houston, The Center for Hearing and Speech.

When asked why they chose the organization, Korduba said, “There’s nothing else.”

Early on Korduba and Hrncir realized there were two paths for Luke. He could either learn sign language and live his life never learning to speak, or somehow find a way to speak and live as close to a normal life as possible.

“We had two goals,” Korduba said. “We wanted him to speak and we wanted him to go to a normal school. If I want my kid to go to school and college, I want my kid to speak English.”

By working with the staff at The Center for Hearing and Speech, it was determined that Luke met all the requirements for a cochlear implant, a surgically implanted electronic device that can help to provide a sense of sound to a person who is deaf.

According to the National Institute of Deafness and Other Communication Disorders (NIDCD), cochlear implants bypass damaged portions of the ear and directly stimulate the auditory nerve. Signals generated by the implant are sent by way of the auditory nerve to the brain, which recognizes the signals as sound.

Korduba explained that Luke, who has been on hearing aids since he was five weeks old, doesn’t get much help from them.

“With a hearing aid, you have to force them to use the little hearing that they have,” she said. “Being profoundly deaf, he doesn’t get a whole lot of help from the hearing aid.”

Once it was determined that Luke would undergo the procedure and get the implants, Hrncir and Korduba applied to Hrncir’s insurance plan for seemingly sure-fire coverage.

But the insurance company didn’t agree and denied their claim, deeming the procedure “not medically necessary.”

“They said Luke was too young and that it would be considered elective surgery,” Korduba said. “Luke met every specific criteria a child could meet. But they denied us anyway.”

Once again, Korduba and her husband were nearing a dead end. The procedure would cost $127,000 per ear without insurance. So Korduba lobbied for help, contacted Luke’s surgeon, turned to friends and even spoke with U.S. Rep. Michael McCaul, who worked to get the ruling overturned.

Finally, the insurance company relented and agreed to pay for part of the procedure. Luke is scheduled to have the surgery for the implants on July 13, 12 days after his first birthday.

Three weeks after that, Luke will be fitted for the outer portion of the device, which, Korduba hopes, will help him begin to hear.

“I want him to function in a hearing world,” she said. “I want to hear him call my name. I cannot wait for that to happen.”

Following the procedure, Luke will undergo tri-weekly therapy sessions to get him used to hearing and begin speaking.

Now that her son is on his way to living a more normal life, Korduba looks back on their ordeal with concern, not for her, but for others who may be in the same situation. “I’m an educated person and I had difficulty managing the system,” she said. “Many people may not know where to go.”
Korduba wants procedures put in place to identify what the next step would be.

“The theory is there’s not much you can do. But that’s not true,” she said. “Research all of your options and don’t take no for an answer. Don’t be scared to ask your physician questions and get answers to your questions. Make your doctor find someone.”


*I love aggressive moms who fight for their kids*

The Problem Child

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

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

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

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

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

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

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

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

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

*SMILE*

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

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