PARENT DEAF-HH: Amanda's Story

Key Words: Deaf education information, deafness related issues, parenting

Subj: Amanda's Story
Date: 97-07-18 03:00:42 EDT
From: MKowalc585@aol.com
Sender: parentdeaf-hh@amethyst.educ.kent.edu
Reply-to: parentdeaf-hh@amethyst.educ.kent.edu
To: beejatwork@aol.com

Some of you on this listserv may feel that you know my personal feelings about the Deaf. However, as an editor or a parent support organization, Parents for Deaf Awareness, here in New Jersey, I must maintain an impartiality. Our group is composed of parents who follow many different philosophies.

In order to adequately provide information to parents from many sources, I try and cull information from many different groups with varying views. Sometimes, I'm really lucky and I get some fantastic stories.

In our current issue of PDA MAGAZINE, Summer Issue 1997, a young mother told me her story. We had met at a New Jersey Chapter -- AG Bell Association meeting.

Victoria contacted me when she received the magazine to thank me for giving her the opportunity to tell her story. She also gave me permission to post it to this listserv.

So the story.

Amanda
by Victoria Hamlin

Hi, my name is Victoria and I'd like to welcome you to my story about my beautiful five year old daughter, Amanda.

Amanda was due to be born about the middle of June 1992. Four and a half weeks before that I took a maternity tour of the hospital. Apparently, Amanda decided, "I'm here now. Let's get this over and done with and not come back again." Because my placenta had separated, Amanda was born that day via emergency C-section.

Since the day she was born Amanda has been nothing but a happy, carefree little girl. We use words like social butterfly, mother hen, caring and friendly to describe her. But we also use words like stubborn, determined, assertive and aggressive. YOU may not think these traits are wonderful but my husband, Joe, and I do because, you see, Amanda is hearing impaired.

When Amanda was two and a half years old, I was eight months pregnant with our second child. I began to notice that Amanda wasn't talking yet. She had a couple of words like "Mama," "up," and "here," but she wasn't anywhere near her age appropriate peers in what she had to say. It dawned on me! "If she can't talk or if she's not talking, then maybe she's not hearing!" It was at that point that my husband took the pot and the wooden spoon behind her head and banged it. And: NO RESPONSE!

In mid-November 1994, we received the results we had dreaded to hear. Amanda had a profound hearing loss. I cried for 48 hours straight. No, neither my husband nor I could believe it.

My first thoughts were, "Oh, my goodness, for 2-1/2 years, Amanda has never heard my voice." And with Thanksgiving and Christmas just around the corner, I said to myself, "My goodness, Amanda has never heard the sound of Christmas!"

Amanda was becoming frustrated because she didn't have the language to express herself. Sometimes she would take to biting the back of her hand. Then something happened that changed everything.

I'll never forget the first day that a wonderful woman from the early intervention program arrived at our home. She was going to work with Amanda and me. She started to sign to Amanda. The first word she signed to Amanda was squirrel. She did this because we had squirrels in our backyard. I'll never forget the look in my daughter's eyes!. ALL OF A SUDDEN, A LIGHT BULB WENT OFF! AMANDA SIGNED SQUIRREL RIGHT BACK TO THIS WOMAN! From that point on Amanda was like a sponge. She absorbed sign language like you wouldn't believe. This woman not only opened up a whole new world for Amanda, she opened up a whole new world for my husband and me. Finally, Amanda had a way to communicate with us!

From this point on my thoughts were always, "What can I do to get Amanda to catch up?" The thing that came to mind was, "Let's just get her fitted with hearing aids and let's just get her pumped with sign language. The latter wasn't so hard to do because Amanda took to it so easily. As a parent I borrowed instructional sign tapes from the early intervention center. I borrowed movies from a local library. I purchased sign books. I found other parents whose children were hearing impaired and were signing. I took a sign language class at a local community college.

When Amanda was three in May 1995, she started pre-school in a program for the hearing impaired. I had put her in a total communication class because I felt that not only did she need to hear it orally but she really needed the sign. Again, my thought was, "What can I do to help Amanda?" "What's best for Amanda?" At this point I took to borrowing more instructional materials from school and I took sign language classes in the evening which the teachers provided.

It was December 1995 when my husband and I decided to have Amanda implanted with a cochlear implant. The operation took place in February 1996 and the processor was turned on April 1. Again, it was a whole new world opened for her. She responded to sounds and produced sounds that she had never heard before with her hearing aid.

She was doing so well with the implant that in January 1997, we changed her school placement. She currently spends her mornings in the oral class and her afternoons in the Total Communication class. This insures my husband, myself, AND Amanda that whatever she learns in the morning in the oral class can be reviewed in the TC class later that day. Joe and I feel that by doing this we have given Amanda two methods of communication.

There was an experience which demonstrated that Amanda uses both methods.

One day I was trying to explain something to her using only the auditory method in order to continue development of her auditory skills. After two explanations, Amanda still did not seem to understand me and she asked me to tell her in sign so she could understand. The two methods are excellent for Amanda's needs.

In September, we believe that Amanda will be only in the oral program. Our big dilemma now is, "How do we get Amanda to continue to sign and learn additional signs?" Why? Amanda's hearing loss is a part of who she is.

Right now Amanda cannot wear her implant when she is in the bathtub or at the beach. We realize that as Amanda gets older, she may elect not to wear her implant. For these reasons we feel we are doing our best to expose Amanda to both worlds.

Often, parents of newly diagnosed children ask me, "Should we sign?" "Should we go oral?" "Into which school should I place my child?" "Should I have my child implanted?" To all of these questions I answer, "I have no answer for you. You have to do what is best for your child and what works for your child and your family." Each decision you make is a highly personal one.

There are no right or wrong answers.

One thing I must add in this story. I don't like Amanda to be referred to as "not normal." Amanda is normal, she isn't typical. She sometimes just needs a different way to communicate. She's treated no differently than any other child. She's a "regular" five year old girl!

I don't dwell on the past because I can't change it; nor do I think about the future because I can't control it. However, I concentrate on today because today is the day that counts and today is the day that I can help Amanda.

(Victoria Hamlin lives in Bergen County. Amanda is enrolled in classes at HIP, Bergen County Special Services. Ms. Hamlin may be contacted through P.D.A. (see address below)).

If anyone would like to receive a copy of this magazine or a back issue for review (if we run out of the current magazine), please send $4.00 to:

Parents for Deaf Awareness
c/o MaryAnne Kowalczyk
272 Third Street
Clifton, NJ 07011

This amount will cover the cost of the magazine, shipping and handling. If you feel you might like a subscription, an order form is included in each issue. If you would like more information about our group you may contact me at 973-478-0564.

Uploaded by: BJ Lawrence/ Kent State University/ Deafed Major