Last week Ethan had the opportunity to participate in a Bilateral Cochlear Implant study at OHSU. The hope is to develop a deeper understanding of the benefits of being bilateral. Ethan was a champ.

Don Plapinger who is the Director of Clinical Audiology has known Ethan since Ethan was almost three years old. I seriously thought on several occasions he was going to break down and cry over the astounding accomplishments Ethan has made.

I got to sit in on the testing and learned some very important things about Ethan. I was shocked. Basically Ethan was asked to repeat about 20 complete sentences. One series was with one CI on, no back round noise, absolute quiet. Which he successfully did. The next with one CI on and back round noise. He just sat in his chair...waiting...waiting and then he would turn around and tell me he could not hear the man talking. With just on CI and back round noise Ethan could not discern the man's voice. This test was repeated with both sides the same depressing results. I was shocked!!!

Then when both CI's were on, with quiet, no back round noise,again he was able to articulate word perfect, even with the same tones used in the sentence. I was feeling already a little bit depressed over the earlier results of just one CI being worn. However, much to my surprise with back round noise, TWO CI's, Ethan was able to repeat back, word perfect each sentence.

People do you hear what I am saying. This is amazing information to have. Being bilateral makes an absolute difference in Ethan's ability to clearly hear. Don was blown away by how well Ethan does. I was even surprised, even after knowing how well he does in school and at home and around town, to be shown the importance of two CI's.

This study comes on the heals of spending the morning with a friend at a local race. About 20,000 people showed up for this race here in Portland called the Shamrock run. My friend wears a CI and only has one. She could not hear, even her cell phone ringing. When someone called she handed me the phone to relay the message. When others spoke, she did not respond. She has commented many times at how well Ethan does in a very large crowd. I figured it was just that he's a brilliant kid, which he is. But seeing how he does in a crowd amazes me all the time. Now understanding the benefits of two just blows me away.

To see him sitting in the chair during the study, with just one CI on not responding at all to the voice speaking with noise piped in for back round shocked me. I am so pleased that we opted for Ethan, on his behalf to be bilateral.

We were met with some criticism over this decision. You know, he should be able to make his own decision when he is older, new technology may come along that is better, he is having the opportunity of ever being able to hear if you go bilateral...and so on.

By the way, this being the midyear school report Ethan has once again made Honor Roll. He gets his purple award and get to go and buy a Lego set. I love saying...."Ethan is deaf people, not dumb". Thanks for reading.

True Confessions....

Ethan has had implants now since he was just about three years old. He is now 6 1/2. Yesterday for the first time ever I went through all the stuff you get when your child is implanted. All the gizmo's, gadgets, and well did I get a good lesson. Ethan worked alongside me as we placed all the parts in a clear plastic sorter, so it's easier to find pieces and reorder what we need.

I have never used the headphones and really have not ever had the need. It was pretty cool. Ethan has had some malfunctioning and it was time I learn what to do. I was able to replace just the magnet for the coil, which I was able to take out of a defective coil from months back. We have been very fortunate with our experience with Cochlear. Aside from an internal failure which resulted in an explant and then a new implant, the devices have held up really well. Especially for an active boy.

I have just learned how to lock the system so Ethan can not change any of the programs. Which was also creating some problems for him. It was sure nice to read from cover to cover the imformation books, and well I must say I feel a little silly.

When Ethan was implanted we saw and heard immediate results. I was always going to get around to reading all the information. My husband works at the hospital where Ethan is seen, so if there was a problem, my husband would email the dr. and walk over to his office to get a replacement or a repair. This of course required little knowledge or work on my end, and it's been easy. It still is, but it's nice to know how everything works.

Ethan, Am I too hard on him?

Am I too hard on Ethan? I often sit and wonder if I am just too hard on him. Earlier, when Ethan was diagnosed as being bilaterally profoundly deaf I was all consumed in reading the reports, the statistics, the options and became so overwhelmed. I wanted to know everything there was to know, and realized that there were many different options and journeys in educating and teaching Ethan.

I looked at this little boy as a baby figuring out how his toys worked. I watched him struggle so hard to communicate. When he was two years old we had come back from one of my attempts to take him out and about town. He had no words, no signs and outings were filled with yelling, screaming and tantrums on his part. Eric was a newborn, so outings were few and between.

We came home and I tried to nurse Eric. Ethan just stood at the front door screaming at the top of his lungs and banging on the door, fighting to get his coat and shoes back on. I just cried as I tried to nurse my newborn. I called my husband, most likely for the 10th time that day; like I always did crying and saying that I can not handle this. I just can’t deal with Ethan. I want to talk with him, and help him. What can my husband really do but listen and he always did. On this particular day I had no energy left. It was nap time and he flat out refused to stay in his bed. He kept screaming to go out the front door. I was trying to keep Eric asleep, but often Eric’s sleep was disturbed by his screaming brother. I needed to rest myself and weariness was my middle name. After almost an hour of Ethan screaming to get out the front door I gave in. I put Eric in the front pack, got shoes, coat and headed out the door. Ethan went over to the car and banged on the door. I had no fight left and decided if all that fuss was for a car ride then fine. I opened his door. He stopped crying, crawled in, picked up a small helicopter, walked inside the house and went to his bed. All he wanted was his helicopter for his nap time. I could not understand his simple little need to have his helicopter. My heart just broke into pieces. But something happened in my heart that day.

This little boy has fight and determination in him that will not give up. I challenge and raise the bar for him which he meets with determination. I am very hard on Ethan and have expectations beyond what is expected for him by others. I know I get rolled eyes, and questioned over his process. I see his confidence grow each time he is met with a frustrating challenge and wants to give in or give up and I say no. He continues and finds himself more accomplished.

I have much respect for those who work in the area of deaf and hard of hearing, but I have been very surprised at how low the bar and expectations are for deaf and hard of hearing children.

Perhaps it has been the alarming statistics that I have vowed not to have Ethan become a part of. Instead he is just amazing and a challenge and a fighter. Compared to the rest of his life, my time with him is short and I want to make the best of all he can be. Knowing full well he is capable of so much. So perhaps I am a bit hard on him. At the end of the day he is a very loving kind hearted boy who till wants me in his space, so he gets it.