Just Plugging Along

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

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

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

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.

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.

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.