Ethan My Deaf Boy

Today He is Learning to Listen.

2011-09-02T19:46:00.000-07:00

Sometimes life is like playing on a basketball team without knowing the rules of play.

This best describes Ethan first week at a brand new school. My heart aches to think that the only community he knew, the only school he had ever attended, and his life long friends would no longer be part of his every day. Why? We felt that for many reasons we needed a different learning structure for Ethan. Did we make the right decision? After the first day of school I cried my eyes out thinking we had not done the right thing. Not for him, but for my own heart. I did not know anyone. I do not know what protocol is, so how can I begin to direct Ethan. Starting in 4th grade at a new school. A school when most kids have hung together already for four years, know the rules of play, and no thought that this new kid might not know.

So began a very challenging week for Ethan. Each day he reported his struggles. His first words in the car after his first day is "mom the teacher talks to fast, and to soft I can't understand him." Each morning I went in to speak with his teacher. Trying my best not to have my tears start to pour. There are differences so extreme from one school to the next.

At the old school, each child was taught the concepts one on one. The student then working through a book to reinforce the concepts learned. Each child sat at their own private cubby, with dividers that kept them from being distracted by other students. The new school is the teacher teaching the class as a whole. Thus for the first time, Ethan has to pay attention to what is being spoken by the teacher at all times. Otherwise he will miss something or everything. There are large tables with about six kids to a table, all within reach.

At the old school the teachers filled out homework slips, with books to be worked in and page numbers. This slip is to be signed by a parent each time there is homework. At the new school Ethan is to take note of homework written on the board each day. The teacher is not going to check if you have your homework written down, nor does he care if a parent has signed a slip. It's Ethan's job to note his homework, complete it and turn it in.

The new school and teacher have been very gracious with my phone calls, my questions, and then me having to learn what protocol is so I can work with Ethan to develop habits and routines. His teacher even took an after hour phone call for me to speak about how the textbooks read and what the expectations are.

Ethan has always been an "A" student in all his subjects. Always on the Honor Roll. He takes his lack of understanding so serious and it is clear he is very willing to push through these challenges. I appreciate this about his character to want to do well, and not just sitting and wondering what is going on. He gets that he does not get it and speaks about it. This afternoon his teacher came up to my car to check in. He is committed to walking Ethan through every single step, by checking in with Ethan, the progress of his learning from moment to moment for next week.

A child's progress is measured by turned in homework assignments, well written reports, test scores, and attention to the requirements in class each day. Very easy to do when you came from a class of only 8 students, and a one on one learning style.

Today he has a smiley face sticker on his shirt. I asked him where he got that. He said, "my teacher gave it to me for doing a good job on my math.". Math? The most complex of learning and listening in this kind of classroom room structure and Ethan did a good job? My heart melted.

Why did we move him? Like I wrote earlier there are many reasons, but one that was high on our list of reasons is the manner in which he is learning will not be consistent with the public schools. Right now we have the blessing of affording private school. His old school is very unique in it's teaching style and one I have favored with hearing children. However, as Ethan gets older he must learn now how to function in open classroom teaching. Consistent with what junior high or high school will be like,and then on into college. We felt that Ethan is smart enough, takes his learning very serious, that moving into this learning structure would be a bit of a struggle at first, but he would learn how to adapt. Adapting without a FM system. Something he has never had. Ethan learning how to be actively paying attention at all times for success in his understanding and learning.

Today is Friday and he got a smiley face sticker for doing well on his math. It's a big faith building moment for my mommy heart. It's a start in the right direction. Truth be known I desperately wanted to sit in on class time, an option that I have, and hand hold Ethan through this first week. I chose not to. I made the decision that if I am not going to be in class, and never have been in class other than parent helping, this week would not be any different. I have seen Ethan's confidence grow a little each day. Something that would have been hindered if I sat in the shadows of his teacher. He is learning what the process is for each day. What he needs to do to gain understanding. Even with my hearing children I have always said, "be the first one to ask questions when you don't know the answers or the expectations." Ethan tends to be a bit shy with new adults in his life. It won't take long for this new teacher to be inundated with many questions from this young man.

It has been a week, very challenging on my emotions, but I see God's hand over Ethan's education. Thank you Lord for a school with such wonderful, caring teachers. We will miss our other school with equally loving and caring teachers, and see now at the end of our first week, that truly this was a very good decision for Ethan's long term academic success. It is very hard with a deaf child to truly know if the decisions we make are the best. Goodness that goes for hearing children too. I stand in awe to see how God orchestrated this transition with things unseen that I now understand. There may be more days of struggle, strengthening, and Ethan working the hardest to follow than he ever has. Someday he will be sitting in a college class with 100's of students in a large auditorium, and today he is learning to listen.

Ethan Update

2011-05-01T16:59:00.000-07:00

Ethan has just turned nine years old. It is hard to believe that only five years ago, we crossed our fingers when he was first being activated with his first CI. Would it work? Would he learn? Will he be able to understand spoken language? All these questions, all these concerns have matured into this terrific young man.

We had an airplane party. He loves airplanes and has hopes to someday be a pilot. He is still figuring out how to build all his models and with some help from the parental figures he may get them done soon.

Ethan continues to excel in a small private school. No FM, no therapy, no special services. He shows up on time for school each day and completes his work on time. He wrote his first book report about two weeks ago and brought home an "A" on his first written book report ever. He is an "A" student and loves learning, reading, and playing with his friends and brothers.

I have been challenged on occasion that I am being a dis-service to Ethan by not offering him more services. That if he had an FM he could do better, hear the teacher, understand better. There is no dis-service to this young man who excels beautifully in school. For Ethan I wanted him to really learn how to listen, and really learn how to ask questions. The same expectation I have had with my hearing children. For Ethan to have to depend on more technology only hindered him, and made him feel that much more different. As the case is with Ethan, he does not miss what the teacher is saying. If he does not understand a new learning concept he asks questions.

Ethan is also obsessed with the weather channel. A few months back a local weather man came to visit the school. He had many questions. One visit was not enough. I contacted this local news station and asked if Ethan could possibly watch the news, particularly watch the weather report delivered. Not only did he get to watch he got to shadow the weather guy. Standing right there with him, beside him, looking over his shoulder and during a commercial break Ethan got to deliver his version of the weather which I video taped. Here is fantastic picture of Ethan with the weather guy. Notice their matching clothes. This was NOT planned.

It is so hard to not shout from the mountain tops how very blessed Ethan's life is in a hearing world. He gets that he is deaf. He knows it and we know it but in the same way I can clearly see this screen with my glasses, Ethan can clearly hear with CI's. A blessing that everyday I am thankful for.

bye bye summer

2010-09-24T13:02:00.000-07:00

Ethan is happiest when running free on the beach. I wonder what it must feel like for him to run free with no sounds of the ocean turning? He knows what the ocean sounds like, as he does wear his ears while we set up our beach blankets, but then they come off and he runs. He will keep running for hours until it's time to come in, sit, settle and get ready to go.

Summer was so much fun this year. I planned nothing and did about everything. We have become experts, even Ethan, at charging his ears before going into an eventful evening. There was not much structure and very little we had to get done. I am planning the rest of my summer's this way.

Now school has started. I am coaching Ethan's soccer team and he is a player, not my kid when out on the field. He is fast and can get to the ball. I have to laugh and please don't be offended, but he does have trouble follow the plays of the game. Such as a direct kick. The ref. was trying to explain to him, and I did let the ref. know his condition and why Ethan wears a hooded coat under his uniform, but even then Ethan still has some trouble following. This will come as he learns more of the game. This is his first year playing. I love watching the other kids coach him on the field and helping him out.

Ethan is now in 3rd grade and watching the life of this deaf boy unfold is something I smile over every single day.

WHAT? WHAT? WHAT?

2010-05-22T12:52:00.000-07:00

Ethan has developed a habit. The habit of saying "what". Is it really a habit or is he really not hearing the first time around what the other person is saying. I have been feeding into his "what" for several months now in that I did not even realize just how I was feeding this habit.

If I am being honest it is very irritating to keep repeating myself and then it dawned on my this past week that it is truly a habit that needs to be broken. We were in the car coming home from school on Wednesday. With 3-5 kids, on average, in the car it gets pretty hectic with conversations all over the place, and I never noticed just how much Ethan says "what" and we all respond appropriately by repeating ourselves. On Wednesday there were just two kids in the car, Ethan being one of them. The conversation was just the two talking about this and that. Ethan would speak, or ask a question and in the same breath always added "what" before a response.

I sat for a while just listening and realized Eric kept having to repeat EVERYTHING he said, based on Ethan's constant "what". I stopped the chit-chat and told Ethan to stop saying "what". He said he could not stop it, as it reminds people that it takes him longer to understand. I asked if he said "what" to his teacher all day, to which he replied "no". I said you can't add "what" to the end of every sentence and the he has to wait until the other person answers. He said "oh is that how it works". I just chuckled, because this "what" word truly had become a habit. Now in the past few days, he is thinking, asking questions and waiting for answers and hearing with no problem the answers. His "what" use is down about 80% and every once in a while he catches himself.

I think it's funny the little things we discover and work through with our deaf implanted children. I have written out on his phone number listen specific questions he can be asking people on the phone to make the conversation flow. It is helpful to him, and none of the questions are followed by a "what". Oh the joys of raising a deaf kid with implants.

2010-05-09T22:27:00.000-07:00

I am the only mommy who gets weepy with each passing grade? Each time Ethan comes to the end of a school year I cry thinking about him while driving down the street. It is not a hormonal imbalance of any kind, this I am certain of. I just know the work that got him here. I know the hours of flash cards and saying "Ethan this is a bear" now you say it. Working for articulation, working to teach him to express himself. And now he is ending second grade strong. Reading at a 3rd grade level and knowing his passions for reading, writing and learning. He has learned the value of reading this year. The value of that "fact" book that he can now explore for hours on his own and he does. His passions vary. He loves geography and last week he asked Emily and me to name the capitals if we named the states. We looked at each other and laughed because right there we knew he knew more than we knew and it would be easier for us to name the states and have him say the capitals, which he did.

So for all of our kids who are progressing well, congratulations for all the hard work. Congratulations to those kids who are moving to the next grade, and to each person who works so hard to make it happen for your child.

Darn Those Things

2010-04-30T18:09:00.000-07:00

Ethan dropped his ear piece on our tile bathroom floor. The kid runs, wrestles, is very active and protects his processors with his life and then a fluke just before bed drops one. It is not working. We took it to our specialist who pronounced it dead on arrival.

We had not purchased the warranty through Cochlear so we thought we'd be forking out a couple thousand to replace this. He needs both processors. After much exploration,my husband learned that we could purchase the warranty plan and only pay $144.00 a month to insure both processors. So that is all we had to pay and then each month a nice little payment of insurance. Darn those things.

Just Plugging Along

2010-04-21T09:51:00.000-07:00

Is my deaf son really turning eight this month? He looks at the calendar every day since April started to let me know how many more days. He has decided to NOT have a friends party this year. I offered a plane ride as a second option and it won out to having a big party.

Ethan is in love with planes. Reading everything he can about planes, drawing pictures, and talking with the pilots down at the local airstrip. He is an amazing kid and I can't express how this kid just gets life around him.

He is about to finish up second grade this spring and is well on his way to 3rd grade. Already reading at a 3rd grade level and pushing himself now at the piano. He just plugs along in a our large family and recently has become the big brother to a little puppy named Eddie.

Learning how to care for a pet is a huge thing for a kid. They are not stuffed animals, need to be taken potty, and fed. He is learning along with his brothers.

I want to address something important here about Ethan. There were many frustrations, anger, outbursts physically, challenges of the will etc with Ethan in his earlier years. Behaviors that were given names and labels. Behaviors that if diagnosed and the parent accepts puts a child into the system allowing more government funding for your child. I stand, mostly alone on this topic, but still speak boldly.

Had I followed the council and advice of the specialists involved in Ethan's life things would be a lot different for him. He only had a 3 year 6 month vocabulary at 5 years old. He was hard to understand and he had trouble articulating. This angered him and produced behaviors that were then labeled as well. Had I started him in public school with the wonderful government funding and services my child would have been in "special ed". There is a time and a place for "special ed" but not for my child.

I knew that Ethan had every right to be angry, and did not have the tools to understand his anger. Anger was still not going to be tolerated and he was taught how to use his anger in constructive ways. He was diagnosed as "oppositional disorder" and I was shown how to work with this kind of child. I had to laugh. The teaching was how to continue Ethan to have these behaviors because it IS a clinical disorder, his wiring. I never went back.

Ethan started Kindergarten in a private school with no special services. Guess what they even let him be part of the complete classroom structure. Ethan learned how to use his words, how to read, how to have self-control. All these disorders which would have easily followed him, and follow many kids because they are allowed to have behaviors that a text book defines. So sad to think. I know I may make some people a little upset in reading this, but if a behavior is not consistent in every element of life it's NOT a DISORDER. Children are brilliant. Even the deaf ones with limited communication skills.

Show them more, expect more and watch your child become more. As long as the government has your kid in the system the specialist are paid more for the less your child does. Your child's "less" allows him to stay in the system.

I sat in a session for parents of deaf children a couple of years back. A parent was distraught to have her child's hearing tested to a normal level. She cried. She said that as long as her son had hearing problems the school bus would pick him up at their front door. Now he has to wait for a bus at the corner of her street.

It is no accident that Ethan has had to rise to the occasion of appropriate behaviors, expectations to do well in school, and now the esteem that he has that he can do it. If your child is deaf and you have instincts about their brilliance act on it. The government has their job, and it's not based on your kid's brilliance. You the parent must recognize this. And we continue to just plug along.

Words To His Past

2010-02-22T22:13:00.000-08:00

The first week with his cochlear implant Ethan walked the runways of New York City, with Vogue Bambini a division of Vogue magazine.

Here is Ethan modeling a little outfit. He also made it into the publication which featured those fashionable kids clothes.

I had a trip to make for business and this happen to be a trip where I would have to be gone for ten days. I was able to pull Elliot and Emily out of school and knew that they could do a lot of helping behind the scenes. It was a terrific trip for Ethan in his very deaf world. He was very much aware of all the new sounds with his new implants. He was still only wearing his implant for a few hours each day.

Here is why I share this. Ethan is one month shy of being three years old in this picture. He is now going to be eight. This was about five years ago. Ethan had no words in these pictures. Lots of screaming, pointing, banging, and outbursts of frustration. So hard on a mommy's heart to not know how to help Ethan. He had no words five years ago. Today he is a motor mouth. He can look at these pictures and say "mommy remember when" and give meaning to what he did take in five years ago. "Mommy remember when I walked to the end and there were all the cameras? Why were there so many cameras? Remember I was not happy to wear that hat and threw it on the floor? He can put words to his past.

I hope I never lose the AWE & AMAZEMENT of what world Ethan lives as a deaf child. Today he told me it would be boring to him if he could not talk to everyone he knows. I explained that he would have had to be in special classes and talk with his hands and every new person who came into our home would have a hard time because they would not know sign. He said his arms would get tired and thanked me for choosing special ears for him.

Ethan continues to do well in second grade. He is right on schedule for academics. I continue to be amazed at his progress and remember saying when Ethan had been hearing for six months with cochlear implants "if this is as good as it were to ever get I would be happy". Now five years later....his good as it gets, gets better each and every day. There is no limit to his progress. Thanks Man who invented this device.

Deaf Boy Realities

2009-10-01T13:00:00.000-07:00

Two days ago my husband came downstairs with a look of worry. I did a quick head count, surveyed the land and all seemed to be well this early morning time before school. The boys were eating breakfast and so far the morning was going well. I could not imagine what that look was about.

David said "Ethan can not use the blow dryer unsupervised." He went on to say that it was left on the floor still running. This new school year we are teaching Ethan that he now gets himself all spiffied of up for school. He can bathe himself, dress, do his hair and aside from forgetting he CAN NOT lock the bathroom door he has adopted his new responsibilities well. One little flaw. Oops he can't hear. He can't hear us during his bathroom time, which is why he can not lock the door. He can't hear the dryer on, so it's easy to forget to turn off that which you can not hear. In the moment I can understand the worry over a house burning down. We are able to teach Ethan off and on, but for now we will oversee this task for a while longer.

Who would have thought? It is just the realities we face and learn as we grow up our little deaf boy

2009-09-28T12:00:00.000-07:00

It is the start of a new school year. Second grade. Wow!!! My family and I attended a zoo event this past Sunday hosted by those families who are Cochlear Implanted families such as ours. It was great to look at tables full of families who embrace this technology.

Our representative, "Dr. Don" as Ethan calls him, made his way over to our table to visit. As he was chatting away Ethan says..."Dr. Don, do you hear the bongo's? Do you think those are African bongo's playing?" Don hugged Ethan and said "Ethan I love you!" "You are amazing, and he can hear that from over 100 yards away and identify which kind of drum it is." I can't imagine what it must be like for "Dr. Don" to pour his passions in his medical field to bring hearing to a deaf child, and then to see the technology work.

I watched many families with much younger implanted children. If Ethan would allow I would use him as a human model of successful use of implants. Ethan is naturally shy around those whom he does not know, so right now that is not an option. I just want to hug the mama's and squeeze the little ones knowing the journey of wonder they are on. I use to wonder if Ethan would be able to put two words together. I use to wonder if other would ever understand him? I use to wonder if he would be able to function around his hearing peers or would I always have to help others understand him.

It is now second grade for Ethan. He is still going to the same private school since Kindergarten. He is not using an FM, and never has. He is not receiving any services and some might think me to be a bad mother for not taking advantage of the free services the state offers. Guess what? All those things I use to wonder about are now memories of success after success for Ethan. I have to say that I do have the benefit of having had two other children come before him. So it's pretty easy to discern behaviors or set backs that are just developmental issues that any kid goes through or a true hearing issue. Ethan is amazing. He is a fighter. If you have read my previous posts you will read that in many of my posts. I would not have known these behaviors to be normal had his sister not come before him. She too had a similar temperament.

Our latest new understanding is going to a birthday party this week at a place called LazarPort. I was not sure if he could attend the Lazar part of the party. We were referred to Hear Always ( 1-800-483-3123) and they said Ethan is fine to attend this party. It will always be something new to learn has he gets older. I am just glad that his deafness has not set him back academically. I know he is only in 2ND grade but there is lost of ground work being laid into being a strong reader, writer, and math and this year is starting out the same as his last two years. He has the desires and passion to learn. When we work on his spelling words I get to be his teacher and help with articulation, enunciation, and correct spelling and reading. It is truly a blessing as a mother to watch your children learn. An even greater one when your child is still overcoming the obstacles of a handicap such as being deaf.

2009-08-19T22:16:00.000-07:00

Long before Ethan could hear he appreciated music. Long before he heard the sounds of music he learned with his eyes. He has two older siblings who are gifted musically. None of which play the drums, but this has been Ethan's passion since he was two years old. He would watch from the front row every Sunday in church as the drummer played. I always sat in the front so he could watch his sister and brother who were part of the worship team. Ethan picked up on the movements of the drummer and never looked back.

Once implanted there was no turning back. Everything was drum worthy and when his first set of sticks were placed in his hand my house became his drum set. One Sunday between services Ethan made his way up on stage and sat at the drums and started playing. Much to our amazement he knocked our socks off and those around. A man standing at the back said something like "wow, how old is that kid, he's amazing" and I proudly said thathe is my son, he is only six years old and he's only been hearing for about three years as he is deaf. Whoa!!! He then went on to say how he has a friend looking to get rid of a drum set and Ethan would be a perfect recipient. Wow, God is sure good. We were not in a position to be buying a drum set, so Ethan got this set and has not stopped playing.

Speaking of his passion for playing the drums he went hiking with his oldest brother Elliot and notice what he is carrying. Those would be his drum sticks. While Elliot was home from college the boys would be out in the garage jamming. I was not a welcome visitor. I even tried to sneak in with a video camera but you know mothers are not always welcome with these cool dudes playing.

Ethan has always been a remarkable child. I know it's braggy, but a day does not go by that I thank God for Ethan and his passions. Nothing stops him from his passions for planes, his passion for music, his passion to learn to ride a two wheeler, or swim or hike and climb trees. He has this amazing "can do" spirit that has no limits.

I want so much to encourage those who are beginning their journey with Cochlear Implants. Yes we have deaf children, yes those earlier years were hard, hard, hard, but the rewards of seeing your child live out their passions is wonderful to watch. Wonderful I tell you in a way that makes you smile and sing and blessed to have this little deaf boy who truly has taught our family so much about life.

Ethan will start second grade this years. He is grumbling over having to learn piano. I assure him that his older two siblings had to take four years of piano in addition to the instrument of choice, but he grumbles to be learning and having to sit still at a piano. I find that I don't have "deaf" issues with Ethan, just your normal brilliant child issues. Just for the record I believe all five of my children are brilliant. WINK-WINK

Oh Ethan you are just so you.

2009-07-03T16:33:00.000-07:00

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.

2009-03-23T14:20:00.000-07:00

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...

2008-11-15T17:56:00.000-08:00

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....

2008-10-24T12:19:00.000-07:00

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....

2008-10-19T11:15:00.001-07:00

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?

2008-10-16T13:27:00.000-07:00

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,

2008-09-29T18:39:00.000-07:00

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!!

2008-06-17T13:40:00.000-07:00

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.

Parenting Habits

2008-05-12T21:43:00.000-07:00

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.

Gaining Confidence

2008-05-08T00:11:00.000-07:00

I have read that horses are very theraputic for children with handicaps. Working with them, learning to be safe with them, and riding them build confidence in a child. Emily, Ethan's only sister and older sister grew up with two horses. It grew her in ways that I never imagined and she is a hearing child.

What they say is true. Earlier this spring we went for a walk in the country. Emily walks this route regularly with a friend and with the weather nice we decided to make an afternoon of it with the boys. Ethan shys away from a strange dog, and will not get close. This is a good thing, but I am concerned that he should learn how to at least be safe, so if he were to meet a strange dog unexpected he would know what to do. A horse well forget it. He would not get anywhere near the fence.

Bless Emily's tender heart. She took him alongside and worked with him, to build his confidence in approaching a horse. She talked about how horses show us with thier face, their ears, and the sounds they make what they may be thinking or feeling. By watching and listening we know how to approach a horse. After about a half an hour he came in closer. I knew this was a mommy time to step away and not interfere. As I observed I realized what an incredible challenge this was for Ethan, and how Emily gently talked him closer, each step taking many minutes to take.

After about an hour, Ethan was able to come in close and even feed the horse. He is so proud of himself to have overcome a very healthy fear of this large animal. I am so proud of him. He talks about this moment often, and we have since been back to visit the horses.

Confidence building for our children who are deaf does not always have to come in a word articulated correctly, or perfectly reading a book. All important milestones, but in many other ways too. This was one way. I am going to blow up these pictures and have framed for Ethan's room.

Loopy Ears

2008-05-05T12:11:00.001-07:00

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.

2008-04-27T19:25:00.000-07:00

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......

2008-04-23T15:03:00.000-07:00

...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

2008-04-22T20:03:00.000-07:00

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

2008-04-02T11:40:00.000-07:00

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