AG Bell Conference - Our First Foray into the IRL CI World

Today, Dad to Toes and I attended a conference for the Ohio Chapter of the Alexander Graham Bell Association.

It was a great conference. Donald M. Goldberg was the main speaker. There was also a panel of experts to answer conference attendee questions. This included Audiologists, an ENT, SLPs and Teachers of the Deaf. It was very informative.

The conference closed with three teenagers who were all implanted at age three and younger. The kids did a great job of sharing their experiences in school with the audience. I don't know that I would have been able to sit in front of 120 people at that age and keep my cool enough to answer questions from a group of parents that were asking what probably seemed like ridiculous questions. ;)

I was pleased to finally get the chance to meet Drew's Mom and Dad. We also ran into a local family that I met prior to the implantation of their son, Thomas.

The Ohio Chapter put on an excellent conference. It was great to see familiar faces and finally introduce Dad to Toes to some of the people I have made connections with over the last year or so.

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We are glad we went. As we set off on the planning process for when Toes enters the public school system, we are finding it more and more important to talk to other familes to see how they handled the transition.

It may seem odd that this was the first "In Real Life" event that we attended that was geared toward kids with CIs and/or deaf children. Actually, it is odd. And I wouldn't recommend waiting so long.

Early in our journey, we made contact with several parents, who were well meaning, but very strong in their convictions and opinions on the path that hearing impaired children should take.

I found it rather overwhelming and somewhat off putting. Those familiar with my political leanings will be rather shocked to learn that I find strong, one sided opinions very irritating. (Well... strong, one sided opinions that are not related to one specific individual who will remain nameless, since this blog is not the place for that discussion.) I just tend to tune out any discussion that does not ackowledge the gray areas that inevitably exist.

It was important to us to do our own research and come to our own conclusions and decisions without a lot of opinions from outside sources.

I found that the more IRL people I talked to, the more I felt that people were trying to tell me the "right" thing to do. A concept I found bizarre, considering how many choices are available.

So, we opted to step out of the community to avoid the influences. And I did my own research into some of the various options:

- Audio Verbal Therapy (AVT)
- Audio Oral Therapy (A/O)
- Total Communication (TC)
- American Sign Language (ASL)

And, of course, the ever present battle between

- Hearing Aids

and

- Cochlear Implant(s)

(and, of course, the Single vs. Bilateral CI arguments)

This led us to investigate the concerns that the Deaf Culture holds towards CIs.

- We watched Sound and Fury.
- And later, Through Deaf Eyes.

And ultimately we came up with our own decisions.

First, the single CI. And a modified AVT approach.

By "modified" I mean that we do not restrict Erin's view of our mouths as we speak. We want to encourage her ability to lip read. And we are considering adding ASL classes to introduce Erin's "second" language to her now - when she is most able to absorb language.

Second, we decided to get her second implant. The reasons for this were many.

But, ultimately, we felt:

- She will gain an advantage in loud situations
- She will better localize sounds
- She will better process sounds in general.

Our hope is that with these enhanced abilities, she will do better academically and socially than she would with one implant.

We opted to do the surgery now because:

- She is young enough not to remember the surgery.
- Her auditory nerve is still intact and has not begun to atrophy.
- Because at this age, she may more quickly adapt to the new implant in regard to learning to process sound.

Today we learned another reason to add to our list... the concept of a "Dominant Ear".

We all have dominant handedness... and dominant eyes. It had never occured to us until we heard the term today that we also have dominant ears.

What if Erin's right ear is not her dominant ear?

So...

Ultimately we avoided IRL meetings because we did not want our decisions to be influenced by others.

And, in turn, I have been very cautious on this blog not to share our decisions with others in the fear that we would appear to be trying to influence others.

But, now that we are pretty well set on our path and are comfortable with it, we have decided to move forward with meeting people IRL. It went well today.

The best advice I can give parents new to this journey is to get out there and talk to a lot of people. But don't let the strong opinions you may run into keep you from trying to meet more people.

Take it all in with a grain of salt and come to your own conclusions.

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I hope to be able to provide help to others in the same situtation... without throwing out too much of the "this is the way you *have* to do it" thing.

Let me know if I am not on the right track with that goal. ;)

One Year Anniversary of Sound

So, I took a look at the ticker under the title of this blog earlier and saw that it said "12 Months Since Erin's CI Was Activated"... and I thought to myself "That's right! October 25! Her Anniversary!"

Well, it must have been a brainfog moment, because her Anniversary was actually October 20. So I missed it.

Oops.

Anyway, let's celebrate a bit late.

Happy Anniversary, Toes!!!!

One year and 5 days ago, you "heard" for the first time.

In One Year you have almost caught up to your peers. Pretty impressive, considering you have only heard spoken language half as long. And every day you have a new word.

Today you said "blanket" for the first time, and formed a new sentence - "No music, Mommy!"

I can't wait to hear what you have to say tomorrow.

Can you believe it has only been a year???

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A Different Kind of Hero

I just received an essay via e-mail that really touched my heart.

When Jenna was 8, she was asked to write an essay on a different kind of hero. She chose to write about her friend, Hallie. Jenna and Hallie are now 10.

It is obvious that Jenna and Hallie have a very special friendship... and are two very special young ladies.

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A DIFFERENT KIND OF HERO

My different kind of hero is my friend Hallie. She is my hero because she has a cochlear implant and she taught me that being different doesn't matter. Hallie has a cochlear implant because she was born deaf. She had surgery to put the implant in her ear and she has a special box that connects to her earpiece so she can hear. Hallie and I are friends because even though we are different we are alike. We both like soccer and school. We like dogs. We like to go to Build A Bear. Last year we went to Build A Bear for our birthdays. I got a monkey. I named it Hugs. Hallie got a dog and she named it Kisses. We went together because our birthdays are three days apart. That is another way we are alike. We are almost the exact same age.

Sometimes at soccer Hallie gets lost because she cannot hear well. I help her. Even when she is lost Hallie always smiles. It makes me happy that she does not get sad and that she likes for me to help her.

Hallie is not a hero like a fireman or a policeman. She is different kind of hero. She is a hero to me because she never gives up and she does not let her cochlear implant stop her from being a kid like I am. She hears differently and she speaks a little differently but she is like me. That is what Hallie taught me. I should not judge people. I should get to know them. Hallie is my different kind of hero. She is special. She is my friend.

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Here is to BFFs! :-D

A big thank you to Jenna's mom for sharing this with me.