Monday, April 27, 2009

Parts of Ethan's Journey

The following is a brief recap I wrote about Ethan on Feb 28th, 2005

The first time you hold your newborn child; there is nothing that can be said to keep mommy from looking into those wrinkly and squinting eyes. Knowing that the love you have felt for the past nine months has just exploded off the charts.

Ethan was born a full term baby boy in April of 2002. Ethan did not pass his left ear newborn hearing screening test. I had no concerns as his second testing as two weeks later confirmed he was fine. Even when the technician tried three separate machines saying that often the machines are not functioning correctly he was passed and off we went.

Ethan, like most newborns slept most of the day. He had a happy disposition with very little fussing. In the first weeks of having him home I noticed that he did not startle like my first two babies. Nor would his eyes follow my voice. He would look so intently with his big blue eyes at me. I thought for certain that I had birthed the next Einstein.

Around four months I noticed that Ethan did not seem to be disturbed by any kind of sound or unexpected noises, nor did he ever turn toward the source of sound or noise around him such as a TV, Emily or Elliot's voice, and even at this time my voice. We contacted our pediatrician who ordered a hearing test for Ethan. Before our next appointment, we did our own series of testing. We banged pots and pans above his crib while he slept, whistles, shaking sounds from toys. All our efforts to wake a sleeping child were fruitless. Ethan lay resting in peace with his deep breathing of sleep.

My heart was breaking inside, but Ethan's world was a happy one. My emotions were kept in check, as we slowly, as a family came to realize that our perfect little blue eyed, curly blond haired boy just might be deaf. My son Elliot decided that if his brother was going to be deaf, he would teach Ethan to feel music. Many afternoons Elliot would take Ethan to the piano, and play really loud. He placed Ethan on top of the piano so Ethan could feel the vibrations.

At five months old Ethan was confirmed at being profoundly deaf in his left ear and moderately deaf in his right ear. We were then told to wait another six months before doing anything. As parents we were hopeful. We did very little research, as we were told our option was to wait and see. We, as parents had no experience with deafness and did not even understand the degree to which Ethan was deaf. Being sent home to wait and see, and not starting anything requiring hearing aids gave us great reason to really not be alarmed. When we walked out of the doctors office we believed that if we just talked louder Ethan could hear us and Ethan would be fine.

Ethan's behavior around his first birthday became very frustrated and angry. He was happy one moment, struggling and angry the next moment. He would hit his head on the floor, bang on cupboards, scream non stop for what seemed like hours. We made two other attempts over the next 12 months to get his hearing tested. It was suggested that he had behavior disorders and then labels were placed on him such as the possibility of being autistic, oppositional disorder, sensitivity disorder. Ethan would try to talk, and focus his eyes directly on our mouths trying to make the same shape with his own mouth and deep utterance were what followed. No words, no communication to connect with him.

Around 18 months he was watching football with David. David yelled TOUCHDOWN and raised his arms. Ethan then raised his arms and said DUH-DOW. He loved to watch football with daddy and thus produced his first real word. We never heard a mama or a dada, which are typically the first sounds a baby makes. We were happy with "duh-dow". His next word was "mo-mo" for no-no.

During the months that followed (18-26 months), Ethan redefined parenting for us. We made attempts to have an audio gram done, but to put a toddler into a confined sound booth and expect him to keep a headset on for testing was to much for this frustrated and anger toddler. And the assumption by the professionals was that he was fine. Ethan could connect with his eyes and follow most of what was going on in his world. We were then told to wait another six months.

Ethan could not transition from one moment or change to the next. Most of his days were filled with screaming, tantrums that rung loud through our home. You could not tell him to put on his shoes and get him excited about where we were going. You could not get him excited that daddy would be home soon. We developed a schedule for Ethan that was predictable in order for Ethan to be able to function in his world. He did not know how to ask for milk, nor could he share with us what made him happy, scared, hungry, or tired. I was with him all day and he and I were able to develop our own communication through hand gestures. However this was frustrating for David, Elliot and Emily. Yet in Ethan's own way we could see his character, his intelligence, his passion for music, and his humor. I had to insist in the depth of my heart that something is wrong with his ears, not his mind.

At 28 months my husband insisted that Ethan have an ABR (Auditory Brainstem Response) done on Ethan. A procedure which involved putting Ethan to sleep, hooking up wires and then seeing what kind of responses he would have. The procedure took about 45 minutes. When they called my husband and I back into the office, I knew from the look on the audiologists face it was not good. Ethan was confirmed as being profound bilateral hearing lost. We were given a large white notebook with the options we now had and directed to an Early Intervention Progam. This was the first piece of literature we had been given concerning deafness. This book was more devastating than the news that Ethan was in fact deaf. This book contained resources that were available to Ethan since he was five months old. I was a stay home mom, stuck with a deaf child who could not communicate and here in my hands were the sources available. I cried for days and almost every single day for months to learn of this information. To learn that I could have been doing so much more for Ethan.

In the three months that followed we were informed that Ethan had truly slipped through the cracks of the system. We should have been informed of Early Intervention (EI) when Ethan was five months old. We were never informed of such programs and not ever having been around any one with a handicapped child did not know to seek out such programs. The devastation of learning that our child was deaf and that we could have been helping him for over two years was more than my heart could handle.

We were given several options on how to help Ethan, but ultimately it was our choice. How on earth could it be our choice as parents? We have no experience with a deaf child. We did not know the first thing about what would be best yet the specialist in this area put that on the parents? We were given our options of teaching Ethan to use his voice, along with hearing aids, sign language and schooling options. How does a mother with four children attend the two, one hour classes each week on signing? Then how do the other family members learn. Language happens every waking day of the week, not just an hour a day. How does a mommy sign to her two year old while nursing a newborn? Needless to say our life with Ethan became more difficult.

I purchased all the signing books I could get my hands on and insisted that the state provide someone to come into my home and teach ME how to communicate with my sweet little boy who was locked up inside his mind. I would write out all the events in a day and then ask this deaf woman to teach me all the words around the events in my life. I also took pictures of every event in a normal week, so I could point to the picture to give Ethan an understanding of what was going to happen next. He learned the alphabets in sign, counting, colors, shapes, and animals. It took hours a day of working with him at home.

Day to day life was very hard and I was very isolated. He was a very loud child, and because there was no way possible to explain to people in passing I finally stopped going out. Because I was his source of information into his world he would not let me out of his sight. As a matter of fact I could be on the other side of the kitchen and he would scream at the top of his lungs until he could see me. He had sleep issues. I soon learned that closing your eyes and having dreams for a toddler is scary, but it's through talking about what is scary that mommy can help. He could not tell us anything, but to scream, bang his head on the ground and throw tantrums.

Around November of 2004 it was clear that his hearing aids did nothing to help Ethan. He could say many words, but unless you have spent a great amount of time with him, you could not know what he was saying. He learned to lip read, which kept his face connected to every family member. He would take your face and turn it towards his when he wanted your attention. He could never say daddy, because those are all letters formed inside of you mouth and hard to read, so he learned to say Papa which was easy to lip read. A day did not pass when I did not cry. I would cry over my inabilities, to want so badly to help Ethan express himself. Everything with Ethan was visual, but how do you visualize the creative mind of a little boy locked up inside.

He learned early on to take everything apart to see how things worked. His world was very concrete, but he could not ask for a waffle for breakfast. One afternoon Ethan kicked, screamed and cried at the front door for almost two hours. We had been on errands earlier that day, I had a baby to nurse, and did not have the energy to take him outside again. It was his nap time and he would not stay put. Finally I gave in. He walked over to the car. I opened the door and he reached in and grabbed a tiny toy helicopter. Once he had the helicopter he walked back inside the house, crawled in bed and took his nap. He could not even communicate his favorite toy for the day.

Ethan is very bright. When the specialists would come to our home to teach him new concepts he already knew them. Ethan wanted to learn and I took every opportunity of time and repetition to teach him. With the options we were given it would seem that his handicap would keep him from many opportunities of normal hearing children. My only relief from Ethan during the day while my husband worked was to sign that I was going to use the bathroom. I abused this phrase on a regular basis. He had no interest in going to the bathroom with mommy. So if I needed to make a phone call, get dressed, or just breath for a moment to collect myself from the emotions that spilled from my heart I would go to the bathroom. I did not want Ethan to see me falling a part. I wanted to be a happy and fun mommy which through the grace of God I could fake really well.


Today April 27, 2009

I will share what happened in the days that followed when I wrote this story out, but that will have to be in my blogs to follow.


  1. Ethan sounds like a beautiful little boy. And I remember reading about Ethan in your other posts and how amazing he is. And you are one wonderful mother! Thank you so much for sharing.

  2. Wow...I've never known a family who has had to deal with this particular issue. Fascinating, Elizabeth. Thanks for giving me a window into Ethan's world. I look forward to reading more.

    And just in case anyone hasn't told you lately, I think that you're an extraordinary mother. Today, you're my hero. I mean that.


  3. I was glued to this post from the first word. Such an incredible journey! I can only begin to imagine how hard that must have been for you, and how heart-breaking to learn that the resrouces had been there for such a long time. I can't wait to read more!

  4. Elizabeth- my heart just broke reading about the lack of early intervention and how frustrating that must have been for parents who really had no experience with deafness. I wouldn't know what to do either, or where to turn. I was just glued to your post from the moment I started reading it. And I'm looking forward to reading your following posts! Thanks so much for sharing!

  5. Even though I've been privy to some of your past... this still break my heart... to think of the time that had been lost... My arms are wrapped around that young mother right now! I pray someone will read this that can help themselves or someone they know!


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