Saturday, April 28

Cochlear Implants: Young People's Views

What do teenagers who received a cochlear implant when younger think about their parent's decision to go ahead with the surgery?

The National Deaf Children's Society (UK) and The Ear Foundation (UK) has produced a booklet with contains the responses of around 30 children who were between 13 and 17 years old to questions including the following:

1) How Do You Feel About Wearing the External Equipment of the Cochlear Implant?
2) What are the Advantages of Having a Cochlear Implant?
3) What are the Disadvantages of Having a Cochlear Implant?

This informal study also includes information on how the implant works, issues of using a cochlear implant at school, communication, language, identity, and deciding to have a cochlear implant.

This is another nice piece of informative material that I hope parents find as they look for information to help them decide what is best for their child.

You can visit the National Deaf Children's Society or The Ear Foundation for additional information, forums, and more.

Friday, April 27

Special Delivery

I was surprised to find in the mail today the letter from the insurance company approving Drew's cochlear implant surgery! I have tucked it away in a special place for safe keeping - just in case. I want to celebrate the fact that everything is scheduled, but I am so nervous that something is going to happen to change the approval status for Drew' surgery.

I don't think I am going to answer my phone until the little countdown clock reaches zero.

Monday, April 23

Too Good to be True?

I have experienced some of the greatest challenges of my life over the last seven months. There were days after Drew was diagnosed that I did not want to get out of bed and face his deafness each morning. Luckily my family and friends were there to support me, and finally I realized that staying in bed, crying all day would not change Drew's diagnosis. So I made a decision; I would get of bed each day. And I would get myself dressed. And I would learn as much as I could about deafness, cochlear implants and oral education. And that's what I have done. Today I feel like I have reaped my first reward of hard work and dedication.

Dr. Kang called today with a date for Drew's surgery. Drew will have simultaneous cochlear implant surgery on June 6. Although not confirmed, he should be activated sometime during the week of June 25. I can not believe that we have traveled to this point in our journey. During these months I have felt like we would never get to the point of having him implanted. Now there is a date on my calendar! We are getting closer to the day that Drew will hear.

Even more amazing (and I'm still pinching myself to make sure I am not dreaming) is that Dr. Kang's office received verbal approval for the surgery from our insurance company today. We should receive a written approval letter within the next week. We are going to celebrate when we receive the letter, but until Drew's ears have two electrode arrays in them nothing is certain. I have read horror stories from other parents receiving calls from their insurance company the week of the surgery with a change in the approval status.

The Cochlear Implant team will finalize Drew's candidacy at their May 8th meeting, but we do not anticipate any issues. At this point, we are just waiting for June 6th to come and praying that nothing changes in the approval status of Drew's implants. If all goes as planned, Drew will be hearing by the end of June. Someone pinch me!

Thursday, April 19

Bluetooth Headset or Cochlear Implant?

For the past few years Bluetooth headsets have become more and more popular. They allow people to talk through their cell phone without holding it in their hand, and without frustrating wires getting in the way. This is because the mic rests on the user's ear and transmits wirelessly to the phone.

Some people think that these devices are extremely useful tools that allows them to make cell phone calls without the hassle of holding the phone or being tethered to a wire.
Others think that while they are useful tools, wearing it during lunch with friends, while playing with their kids, or to bed may project an image of arrogance or "full-of-themselvesness".
This debate, while interesting to me, is not the focus of this post.

It occured to me and Drew's Mom that with all of the Bluetooth-wearing people hustling and bustling around town, Drew's cochlear implants won't look as alien as they would have just a few years ago.

Once a bit older, all the neighborhood kids may even get jealous, perhaps assuming that Drew evidently has a cell phone and not one, but TWO "Bluetooth's" - and their stodgy parents won't even let them have their own phone yet.

Yep, I think I'll just tell all the kids that we love him so much that he gets to have two Bluetooth's.

Sunday, April 15

Cochlear Implant Discussion Groups and Listservs

If you are asking yourself any of the following questions, visiting the link below should help you find some answers.

1) Where can I find out more information about cochlear implants and hearing loss?
2) What are some good cochlear implant, deafness and hard-of-hearing discussion groups?
3) Are there any cochlear implant listservs?
4) What is it like to be a parent to a deaf child with a cochlear implant?
5) What is the best education style for my deaf child?

Visit Cochlear's Discussion Group Page to help you determine the answers.

Also helpful is Boston Scientific's "Bionic Ear Journey Resouces" Page. There you will find a downloadable "Hearing Resources Guide".

Thursday, April 12

25% Budget Cut to the Regional Infant Hearing Program

We have learned that Governor Ted Strickland has proposed a budget cut to the Ohio Department of Health which will result in a 25% cut in funding for the Regional Infant Hearing Program in the state of Ohio. This RIHP is vital to families which include a child who suffers from hearing loss. It provides hearing impaired children and their families with education, un-biased communication options, therapy, and support. These services help these children develop the communication skills needed to attend school and eventually work and live alongside their hearing peers. We must realize that most families in Ohio do not have the personal resources to be able to seek out and employ the small number of persons or organizations trained in providing the deaf or hard-of-hearing with the best education and therapy that they need.

The services we have received so far through the RIHP have been nothing short of extraordinary! They have provided us with parent education, support groups, activities which help foster communication skills with our son, loaner hearing aids, among other services. The RIHP has provided all of these services to us free of charge, despite not having a budgetary increase since 2001. This is an absolute necessity to make sure that our deaf and hard of hearing children do not “fall through the cracks”.

This wonderful program will not be able to continue to provide these necessary services with the 25% budget cut. There is no doubt that the RIHP will be forced to cut vital services as a result of the lack of funding from the State, which will impair and delay the development of our hearing impaired children, and in turn impair our fine State for years to come.

We have contacted Governor Strickland regarding our sincere concern over these proposed budget cuts. If you would like, please contact Governor Strickland and ask him to secure the necessary dollars to prevent the 25% budget cut to RIHP. Early identification and intervention make all of the difference in the life of a child with hearing loss, and the citizens of Ohio need the Regional Infant Hearing Program to be there for them at full strength.

Tuesday, April 10

Youngest Child in Ohio to Receive Simultaneous Implants

It is amazing to me how many things have been in the media recently regarding deafness and cochlear implants. I don't remember seeing so many things about the deaf community and cochlear implants before Drew was born deaf, but then again, maybe I am just noticing it now, since these story lines impact my life in such an emotional and personal way.

The local CBS affiliate did a Pediatric Health Source piece on the youngest child in Ohio implanted simultaneously (a title we are hoping Drew will soon take over!). We were so excited to see this story, bringing awareness to congenital hearing loss and cochlear implants in Columbus. In the story you will see the Doctor and auditory verbal therapist that will be working with Drew. We have become friends with this little boys family and are so happy to see his progress, as he has been hearing for only three months! (Notice in the video the babbling he is doing. It makes me cry every time to watch it, as I sit waiting on the day Drew will babble like a "normal", hearing baby).

There have also been story lines on CSI: New York and Law and Order, Criminal Intent just in the last week that revolved around deaf culture and cochlear implants. These stories were both quite interesting to watch. I have to admit that I laughed quite a few times at the "deaf culture" undertone in CSI. The Law and Order story was actually quite good as they accurately portrayed experiences we have had with "deaf culture". In one scene a deaf mother was so happy her baby was born deaf, calling a hearing child, "a time bomb waiting to explode." I guess our daughter will explode any day now!

Monday, April 9

Communicating with Drew

It's hard to believe that Drew is over six months old! These months have just flown by, partly because every day and week is consumed with appointments for Drew. I was encouraged this week when talking with the mother of an implanted four year old. She told me that her life is back to normal now - hardly any visits to doctors or therapists. There is hope! The good news is that our little boy continues to grow and with each days gets closer and closer to hearing!
We took Drew for an appointment with his mapping audiologist through Columbus last week. She put Drew in the sound booth again. He showed noticeable reaction to sound at 60 db again at several different frequencies while aided. He is getting minimal benefit from his hearing aids, but at least we know he is getting something. All of our evaluations are complete and Drew will be approved as a candidate for his cochlear implants at the May Cochlear Implant Team meeting. We are hoping to go into that meeting with a surgery date already on the calendar, so keep your fingers crossed.

We are trying daily to help facilitate Drew's communication. Our house is very loud these days, as the volume of Drew's talking is on a constant incline. It's funny how use to noise we have become, but I am sure that his loudness gets on the nerves of others. At this point, however, we are so happy that he is still vocalizing, since it has been almost seven months without him hearing any conversational chatter.

We also think that Drew is really starting to understand the sign language we are using with him. Every night when we are ready to give him a bath we say, "Drew, it's time for your bath." Then we sign, "bath." Whenever we do the sign for bath, Drew gets this huge smile on his face! It is so cute and we really do think that he is understanding us. I also think that he is starting to recognize the signs "eat" and "milk" together to know that he is about to be fed. He will stop crying when he sees these signs. While I am not a huge proponent of sign language (because we are choosing an oral deaf education approach), I do think that it will help to bridge the gap in Drew's communication while he is learning to listen and communicate with his implants.

Monday, April 2

Sounds of Silence

Stop whatever it is that you're doing for 30 seconds. Take a deep breath, exhale and be silent. Listen. What do you hear?

Music? A phone ringing? Distant people talking? Nothing?

Think twice about whether you're really hearing "nothing". Even in the quietest of inside rooms, there is likely a relatively loud whirring of an air conditioner or refrigerator, spinning fan of a computer or even the sound of a breeze against the walls of your home. Sound is all around us, all the time. We just don't think of it much since we're so used to it. Do you hear it?

I write this from Panera Bread where I'm having lunch and doing some work, and as I concentrate on writing I hear little. When I push back from the keyboard, however, I notice the sounds around me. I hear the classical music playing, the din of conversation, rattling plates, cups, and silverware, an ice machine rattling, as well as doors opening and closing.

If I really listen, the noise is almost unbearable. It is extraordinary that those of us who can hear deal with these many auditory stimuli all at once. There are loud noises, soft noises, high frequency sounds and low frequency sounds. All of these different inputs may take up nearly the entire spectrum of what the ear can hear at one instant, yet our brains are able to make sense of all of it.

The conversation in this large room and the coffee grinder together make for what would seem to be an impenetrable wall of noise, but yet if I focus I can hear the lady 4 tables away speak to her acquaintance about the nanny they interviewed.

A few short minutes ago I sat here in what seemed to be silence, and now I feel overwhelmed and annoyed by these sounds. However, as my focus shifts from writing this, I know that it will only take a few seconds until I am no longer conscious of the sounds that surround me and my mind will block out all but those sounds which I am interested in hearing. That's amazing.

One woman describes her first hearing experiences as follows:

“Everyone with a cochlear implant says the first day will be the worst because everything sounds strange. I knew that for me that would be squared a million times,” she said.

But after sensing vibrations rattling the inside of her skull she felt miserable.

“I felt like it was a huge mistake for about five hours. Then it started to get better. My husband put a Beatles song on the radio, ‘When I’m 64.’ At first it was just bumps in my head. Then I heard a little of the beat,” she said.

“I got home and turned on the water, rang the doorbell” and created other everyday sounds to see if she could hear.

Her dog’s bark sounded like a gunshot. A toilet flushing felt like a truck had hit the house. Then she took off the external pieces of the implant apparatus and went to sleep.

The next morning she put the sound processor behind her ear, connected the magnetic headpiece to the implant under the skin of her cranium and went for a walk in the woods.

The sense of hearing impacts our daily lives whether we know it from second-to-second or not. While many adapt and live wonderful lives without it, hearing is a part of my life that I want to share with my son. That's one reason we want to "turn on his ears".