Oh Ethan you are just so you.

Today was such a wonderful start to the 4th of July weekend. We decided to take today for our big vacation day of fun. Knowing Saturday would be packed on a beatiful sunny day anywhere in Portland.

We were all sitting on a dock eating at Newport Bay. Boats coming and going, cool breeze, and constand chit around the table. I looked at my husband and smiled. I said, you know I use to dream of days liket this. Wondering if our family could sit, talk, laugh and just have fun without the struggles of trying to comunicate to a deaf child. It was so hard in those earlier years. Today our biggest concern was Ethan leaning over the water and losing a device. So we took it off and he was having a ball feeding the geese. No worries.

If you are in the earlier stages of CI work. The work is worth ever minute, every appointment, and every tear you will shed over progress or lack there of. I am so proud to know that Ethan is just a normal kid having fun with his family on a sunny day.

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.

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.

Parenting Habits

There are many times when I feel I have failed Ethan, by the habit of parenting hearing children. I forget he is deaf. When is wearing his CI's he is part of everything. He knows how to assert himself if he is not understanding something, and he is a leader by nature which typically keeps him on top of things.

Every so often he looks into my eyes with such confusion and hurt and it dawns on me that I forgot in that moment that he is deaf. I have a habit of moving kids from one area of the house to the next, along with me. Although Ethan is very efficient with his CI's there are many times if I don't have his attention that he is not tuned in. He may be in deep creative thought building with Lego's or playing with his toys and even though he has an implant he still has the ability to tune out. Selective hearing can happen even with deaf kids.

This morning he had this look of your forgot about me. Okay he didn't just have that look he said it and he was right. I expected that he could follow us into the next event and he didn't. Which in my habit of parenting is no big deal, but it's a big deal to Ethan. I forget that he is limited in distance with his CI's. He can hear me easily from his bedroom upstairs, but if the door is halfway closed he can't hear me calling from downstairs.

I know I will not get it every single time, but the times that I don't it is typically related to how I parent hearing children and expect Ethan to seamlessly pass through with what is going on. It's a habit with having four hearing kids.

These thoughts area all kind of jumbled, but it made me sad to think of how it must feel for Ethan. Working on those habits of rambling with the expectation that everyone has their ears on.

Loopy Ears

When Ethan lost his second ear mold I realized that I had to come up with something to keep his CI devices on. With special tapes stuck to his head day in and out, and the irritation to his skin I again realized there must be something that can keep these things on. After much thought I came up with the Loopy Ear Attachment. No more ear molds, no more sticky tapes. These small elastic bands will attach to your child allowing them to move, tumble, and wrestle and still keep their CI devices in place. The benefit of having a soft fabric around your child's ear will be much more comfortable for them. So many have issues with fungus in the ears, and this too will no longer be a problem to worry about. The Loopy Ear Attachment stays on, even when changing out a battery. It never has to come off, unless you want to wash it, which you can do too. I am currently working on color treatments to offer some fun colors to mix and match with. Stay posted.

If you would like to special order Loopy Ear Attachments simple do the following:

Measure with a string around your child's ear and then measure up against a ruler. Then measure the space around the CI device with a string and then measure that against a ruler. This gives the most accurate measurement. I am charging $12.00 per set. This price will include having the Loopy Ear Attachments mailed directly to you.

Here is my email address to send me your information. ejoonthego@aol.com

Once I have your information, I will email my address in which you may mail a check too.

Please allow about 4-12 days for delivery. If you have any questions you may also email me.

I am really going to just say this unedited. How can we not want our children to hear? How can we really believe that being deaf, not hearing, not being able to interact and meet strangers is okay and normal? Being deaf is not a choice, and Cochlear Implants is an option. During Ethan's birthday party, shared by all three boys, Ethan did not miss a beat. If he did not have Cochlear Implants he would have "adapted" to what is. But why? Why have to just accept and adapt when there is a chance to live a better quality of life.

You can not tell me, a very normal hearing person, who has never been shut off from the world, that being in a room full of friends and not being able to communicate is just your normal if you are deaf. It's adapting and working with what you have, but in reality I can't imagine Ethan not sitting, laughing at all the jokes and silliness he can hear through Cochlear Implants. When he was not hearing he would withdraw, watch, and there was this frustration and sadness in his eyes. He wanted to know what was going on, but could not understand. Being deaf was no glorious condition to embrace.

I have marveled every single day to watch as Ethan plays with his brother's. His leadership skills developed in our home through so much language. Listening to Ethan teaching his younger brother who is two, words, sentences, and songs. It can be argued that this all can be done through signing, but language happens every waking hour, not a class to learn two hours a week.

Ethan talks on the phone once a week to his oldest brother away at college. They talk about airplanes, and school and I marvel to think that this deaf boy is leading a very advanced life. He was smart long before he spoke his first words, but his frustrations, confidence, and ability to communicate limited him, giving him evaluation scores that depressed me. I could see the brilliance in him. He is about to finish kindergarten. He attends the same private school that his older brother and sister attended. He is reading, doing math, and well above average in his school reports. Had Ethan not had the implants I know for a fact this would not be the case. I have started and stopped every single program provided by the state for deaf children. Started with the hope that they would recognize, beyond Ethan being deaf, what a bright child he is, and then stopped when I realized that they saw him with a handicap and for some reason that handicap was attached to his intelligence. The way inwhich they would work with Ethan frustrated him, and then me.

There is more for our children because they are not limited to special classes. I get that for Ethan and I get that he is able to do more. He is becoming the normal for deaf children. It is a gift we provide for our children when they have that option. Would you say no to a child who needed glasses? Of course not? Why would we not offer the ability to hear either?

I was in a store recently and the woman in front of me was deaf. I watched as she tried to commuicate with the clerk and I could see her frustrations. I am so thankful that Ethan is blessed with the ability to hear. Yes he hears. He hears beautifully. He is functioning in a hearing world and it does not matter how he got there. It does not matter then when his devices come off each night and placed on the chargers that he is now deaf because 12 hours of his waking life he hears.

Can you tell I am very passionate about his hearing. I would love to kiss the brilliant man who invented Cochlear Implants and you know what I think my husband would kiss him too. LOL

I will choose......

...to obey my mommy x 20=discipline. LOL

Ethan has been acting out. I know, you must be thinking...what? A six year old acting out. The middle child of five, strong willed, and acting out? What kind of mother am I. If you look at the picture, not a bad one. As a matter of fact not a bad one at all.

Today Ehtan was acting out, and yesterday and even the day before. Minor offenses, but with Ethan you can not even for one second allow the minor ones to slip by because they will escalate so fast your will be wondering what? How? When?

Today Ethan did not obey a simple instruction. We have a manner around here that this mommy does not bend on. It's called first time obedience. None of this counting to three. In my opinion I would be giving my children three chances to disobey, when in reality the expectation is to obey now, not when the mood is right and not on the count of three. So a little disobedience bought me 30 minutes of blissful peace. I have recently started sentance writing with Ethan and it's working like a charm. Apparently as an older parent some of my marbles have slipped away.

I was talking to my oldest (20 year old son) who is away at college and told him I had Ethan writing sentances to which Elliot said..."I hated when you made me do that." "Sometimes you would make me copy entire books if I goofed off during my reading time." Why don't I remember those things. I must remember to call on my older two as reminders with the younger boys.

So Ethan wrote today "I will choose to obey mommy." It took him 30 minutes and he was a delightful boy. I mean the tongue curving just outside his mouth, which he does when he is concentrating. I am begging that he get into more trouble just to see him working so hard at his sentances. His printing is improving with each line. Darn he is playing nicely with his brothers ad no signs of behavior issues today.

My amazing boy

I was thinking today how Ethan is a typical almost six year old boy. (in a week he will be six). I am on a CI loop and few emails have been tossed around the word "normal". Is Ethan a "normal" kid? None of my children are normal or typical for that matter. They are each extraordinary. When I realized Ethan was deaf and the statistics posted below normal standards I knew where my challenge would be. How to grow Ethan in a world of being deaf, but still being able to see all the potential for extraordinary. I knew he was a problem solver, long before I knew he was deaf.



He would figure things out. Some babies get stuck and start to cry or whine for help, but not Ethan, he would wiggle, observe, and figure out how to get out of a bind. As early as eight months when he was an experienced crawler I could see his determination to figure things out on his own. Around ten months I put him at the top of the staircase, to see if he would bull doze over the edge. Nope, not Ethan. He carefully surveyed the land, backed away, and new his limits. He was taught very early to go down the stairs backwards. Okay this may all sound normal, but for our normal in our family this is truly extraordinary.



Ethan has never allowed his handicap, being deaf, to prevent him from figuring out what he wanted to know more of. This has amazed me in his process of learning to speak, read, and ask questions over and over about everything he hears. He wants to be in the know, and he gets when he is not and will push to know.





His cochlear implant has connected him to the same world that I am connected to and he appreciates being part of our world. He knew at three that his world was not the same. He knew, before his implant that he was missing out on things he should not miss out on. Getting his Cochlear Implant has amazed all of us. Ethan is so not normal, but he is amazing in every single way. Just as my other four children are.



Does living in a non-hearing world mean that he would have missed on on much. Absolutely!! Many will argue this to not be the case, how can I know as I am not deaf. But a deaf person's normal is very different from a hearing person's normal. And seeing the difference of who Ethan was being deaf, and who he is in a hearing world is a night and day difference. I am so blessed by his appreciation of his special ears. He knows he is deaf, and he knows he can hear with his devices on. He is just amazing and I know someday God is going to use him in huge ways.

Ethan's story

This is the story of a boy who completely amazes me every single day. With a handicap that started off with major set backs in his little life, but with the commmittment and hard work of a loving family he is doing above and beyond what we ever expected. This blog is about him. In hopes that other families with deaf children can learn, grow, and be inspired by Ethan's life.

Ethan will be six next month. He is now three years into having Cochlear Implants. He is bilateral and even with inplant setbacks he just does not settle or give up. In the blogs that unfold I will account the events of Ethan's life as a deaf child. I will share journal entrees, thoughts, insights and along the way the amazing things that this boy says and does.

It has not been an easy road. It has not been one of a perfect layed out plan. It has been one of trial and error. One of removing ourselves from all systems that seem acceptable to working directly with Ethan at home. I am just one parent with one specific experience. All of our roads can be the same, but how we walk, embrace, and take notice of the view is different for each one.

I am sure I will inspire, encourage, make some mad, and all in all this is our process. Differant than any one person. This is about Ethan and his walk through the process of being deaf. It's about me, his mother and how I faced the obstacles, trials and hard decisions.

Ethan is blessed with a large family. A very language rich environment and although your family may be simular, we are all truly different in every way. So come visit from time to time.

Blessings Ethan's mommy