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.

And his miracle continues...

Ethan is deaf. You can go to this link to read up on his miracle http://elizabethonthego.blogspot.com/2008/03/monday-miracle.html.

This week he had his report card come home. He has the same first grade teacher that Emily had over 14 years ago. It's pretty cool to think that this teacher loves her job so much she would be there even for Ethan. In this picture are two awards. One for Honor Roll and the second for 2ND Highest Achiever. I cried when he brought these home. I realized that all the hard work with this kid just paid off in one moment. I remember feeling this very feeling with Emily. Both of these children are my strong willed children. We have joked for years that we don't know which is more of a challenge. A child who is strong willed that talks, or the one who is deaf. Watching how God is growing up both kids and the delight they are just goes to show that God is working every moment in the lives of these kids.
These are Ethan's special ribbons. He will not let them leave his special shelf in his room. So I quickly had to sneak them out. He is more humble that his mother is at this time.

Thanks Lord Jesus for the will you have put into this child to do his best work always, knowing that You gave him a terrific mind to learn. He may not always be articulate, he may not always like it when he does not get his way, but he loves to learn and I am so blessed to watch him humbly put his ribbons on his shelf for display. I am blessed that he can give thanks to YOU for making him special and he knows that when he sees you face to face his first voice to ever hear without cochlear implants will be your voice. Ethan thinks that is very cool. Thanks for reading.

An A+ day for Ethan....

For many months, even years now I have understood the anger outbursts from Ethan. The outbursts of frustration. Basically during that fragile language developmental time he was deaf and his only form of communication was pitching fits at the top of his lungs. These have became less and and less, but even so, we have been working hard on Ethan truly getting a hold of new ideas on dealing with his emotions and ditching the old.

I have had countless days of not knowing what to do, or how best to help him along. I guess I adopted the passage of scripture in Galatians that speaks about the fruit of the spirits. It goes like this:

Galatians 5:22-23
But the fruit of the spirit is love, joy, peace patience, kindness, goodness, faithfulness, gentleness, self-control.

There is not one disclaimer to this passage. Meaning, okay if you are deaf and have problems just dismiss your behaviors and act however you want. I have never dismissed in my hearing children behaviors due to temperament. We are all called to be nice as stated in Galatians. So with that we have been working with Ethan in his attitudes, and his behaviors. Asking him, when a melt down is coming if he is being patient, kind, gentle...etc. etc.

At least once a day often more times than that we will have some kind of issue. This entire week has been a crossing the bridge point for him. He has caught himself about to blow steam, and changing the outcome on his own in a positive manner. I mean in his first breath, realizing he has options for his little life. Making very good choices with how he behaves. All week I have been praising him, thanking him, and encouraging him. He knows he is happier and feeling more in control of his life. He's only six. Some of us don't get that long into adulthood.

Yesterday when he was getting his jammies on, he said..."mommy I have had a really good day today". So I said.."yes you have lets see what made it so good". So together we took inventory and I said "Ethan you have had more than a good day, you have had an A+ day.

Here is what an A+ day looks like for Ethan.

AM
-getting dressed for school on his own,
-eating breakfast without complaining about food choices
-brushing his teeth without being asked.
-Not whining when I say there are only 15 minutes of play before school, but instead saying "okay mommy" and then without any fuss heading to the car without complaint.
PM
-being happy about decisions for how time will be spent after school.
-reciting scripture to his teacher, a week before he has to, for school (Ephesians 6: 10-17)
-eating all his dinner without complaint or whining.
-helping little brothers with Lego's' playing nice with them, and coming to me when being mistreated, rather than taking matters into his own hands...literally.
-reading the entire Green Egg and Ham book without complaining it's too much
-having a true quiet time before bed

Really, this is an A+ day for most kids, but for Ethan even more. He has crossed a bridge this week and my heart just shines with joy in knowing that he is coming along as a deaf kid with the ability to hear with these amazing cochlear implants.

P.S. He did not throw a fit when I chose not to follow the fire engine in the parking lot of the grocery store. He ever so nicely said "mom that makes me feel a little mad". Then in the grocery store we bumped into three fire fighters who took time to answer the questions of all the boys. Twice Eric said to the fire fighter that his brother is deaf, and Ethan said "yes I am deaf, but these things help me hear just fine". I Love being on the sidelines of these conversations.

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.

Ethan, Ethan, Ethan,

Hello are you deaf or what?

Seems odd as his mother to even write or think that, but I have had to stop reading statistics. As of late this kid is about as normal as they come. I use to think that he would not know how to navigate in this world without me. That is so not true.

Today a the park this other six year old was carrying around tic-tac candies. The kind that that shake loud in it's container. Ethan walks up to this kids and ask him what it is. I sat back and observed as this exchange happened. Ethan was concerned that these were "medicines" and it's not okay to take any kind of medicine unless your mother is giving it to you. I was so proud of him. The boy kept pressing that this is just candy, so I did then walk up and explain to Ethan what they were. He tried one and decided a candy that tasted like tooth paste was not candy.

So here I am worried about all the normal things of kids, you know like drugs being past out at parks when I have my back turned for a split second only to realize that Ethan is getting the world.

He is now four weeks into first grade at a private school and learning above his hearing peers. I read the statistics, which have been good in that I am someone who refuses to just settle into this ever being Ethan, but as of late I have stopped. I am a mother of five kids. With that comes instincts beyond what any specialist could ever believe or understand. I still laugh over the fact that had Ethan gone to a public school in kindergarten he would have been placed in special ed because his language was that of a 3 1/2 year old. His brain, well does anyone everyone really know how to test the intelligence of a deaf child or do we really believe because they can not speak clearly they are then destined to that which is lower than what they are capable of. I digress. I still have issues, can you tell, but Ethan well he's amazing in every single way of boyhood. Much a leader, he questions what he does not understand, and he wants to be a drummer and piano player and folks, if you listen a few doors down you can hear Ethan playing the drums on beat.

I know I am a little bit of a mommy bragger at this piont, but if you could know my heart and the fears of years past....I say wow. Who would have known. Follow your heart and what you know to be true of your child. Most of the specialists have not been deaf and they too are following a curriculum for the general population.

Ethan, Ethan, Ethan....you are amazing.

He survived!!

I know this may come as a surprise to many, but Ethan survived without me for an entire seven days. Those first days leaving him at Kindergarten last fall were tougher on me than on him. And then his first field trip without me. I have spent so much time fussing over him and making sure he is prepared and ready for the next events in the day that as I slowly let go of him I get a little anxious.



The last week was a testament to the fact that this kid is really going to be just fine. My husband had all three boys while I took an east coast trip with my daughter. My husband is terrific with his boys, but it's in rare form when he has had all three for more than a day, let alone seven days.



Calls were made every day with updates. The most precious of all, and one that I am sad I missed, but an important one without me. Ethan learned to ride his bike with just two wheels. I have been holding off bike riding for several years. So I bought him this cool peddle tractor and all the boys have had these cool tractors or big wheels. I have fretted over the metal in his head and didn't want his earlier, less coordinated days to push into super hyper mama bear mode. I finally decided it was time. Three weeks with training wheels and papa decides he can try without. So, if I was home I would have freaked a little over the fact that he had only been on the two wheeler with the training wheels less than a month. I would have suggested we give him six solid months. But I was no where to be found when the boys got the tools and removed this safety net. And off he went. He is now over the edge of curbs, down grassy hills, and very coordinated. I must admit I am quite surprised at how well he has done in a short amount of time.



In school there was concern over balance issues. I purchased a kids Yoga dvd which is all about balancing which he loves and I am certain this has helped. After being away from him for over a week I was more amazed at how well he speaks. To be gone, and away from his voice and return, even my daughter recognized how well he speaks. Ethan is going to amaze me every single day of his life. Now who really survived? My husband or Ethan. Well they both did. By day five my husband said he had a new appreciation for me. Bless him for taking such good care of our boys.



Another thing Ethan mastered while I was gone is getting his "ears" off the chargers and putting them himself. Wow, so much progress.