bye bye summer

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?

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.

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

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

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.