We found some great support systems

Hello, my name is Debbie and my husband is Robert. We have been married for 10 years and are the proud parents of Nicole, who is 4, and Anthony, who is 1. Two years ago we discovered that our daughter had a moderate sloping to severe sensorineural hearing loss. This came as quite a shock to us, as we had always
thought she could hear.

When Nicole was born, they were not performing newborn hearing screenings. As she grew she would let us know when she heard the “choo-choo” which was three blocks from our house. She could also hear the dog bark, follow simple directions, and sing songs. However, she only sang the tune, no real words. She “spoke” all the time. She seemed to talk in sentences and have the inflection that you hear when people speak. We liked to call it “Nicole-ese” because it seemed to be a language that only she had. We first thought the difficulty in understanding her came from her speaking too quickly, but over time I began to really wonder why she wasn’t speaking. She seemed to be such a bright girl, figuring things out and adjusting to any type of situation with such ease.

At Nicole’s 2 year well baby check-up, I asked the Dr. about her lack of speech. She had about 10-15 words that only her daddy and I could really understand. The Dr. assured us that she was well within the normal range and that all kids develop in their own time. I was ok with that for about 2 months. When I didn’t see her adding any words to her vocabulary, I sought out our state’s Early Intervention Program. At this time I was starting to believe that she had some sort of processing disorder that wasn’t allowing her to form the words. She was evaluated by the developmental specialist and a speech pathologist. She passed the development test, no problem, but failed the speech part.

At the time of the evaluation she was 29 months old. She was found to have the receptive language skills of an 18 month old and the expressive language skills of a 12 month old. Still, no one, not even the evaluators, believed that this lack of language was from a hearing loss. After receiving services for a month and a half, I was talking to Nicole’s service coordinator. She asked if we had ever had her hearing tested. I told her no. She informed me that I could have her tested through EI if I wanted at no cost to us. I agreed, thinking it was one more thing to rule out. Even up until this time I never considered that she had a loss, although there were friends of ours that were beginning to believe she did.

We were able to get an appointment for January 10, 2002. Nicole had a Visual Response Test in the booth (where the animals will dance when the child looks at them for the noise). I thought she was doing pretty well, but was starting to see that she didn’t respond to all of the noises. Nicole also had a tympanogram done that day which showed some fluid in one of her ear. After the testing, the audiologist explained to me that Nicole seemed to have a hearing loss; however due to the fluid in her ear, hte test may not be accurate. She advised me to see our Dr to try and correct the fluid problem.

All the way home I kept thinking…Oh my, she has a hearing loss…..no wait, it’s just fluid. Because I went to this appointment alone, I was the one that had to tell my husband of the possible loss. He chose to believe that once the fluid was cleared up, that her hearing would be too. Our next audiological exam was on February 13, 2002. It was this test that confirmed that she did indeed have a moderate/severe hearing loss and would have to wear hearing aids for the rest of her life. I took that news pretty well while at the clinic, and seemed to be dealing well with it on the outside, but on the inside I was being ripped to shreds. How could this happen? We didn’t have any family history of hearing loss. She is such a beautiful little girl, why was she being punished by having to wear these things. I had to be strong for the rest of our family.

I became the “information” person. I hated having to explain to everyone about Nicole’s loss, possibly because I was having a hard time dealing with it myself. I was also expected to have answers to everyone’s questions. At that time I knew nothing more than what was told to me by the professionals. We had one more hearing test in April that confirmed the earlier findings. It was also consistent with her previous tests. Hearing aids were ordered for her and she began wearing a loaner pair until her aids arrived.

In the past two years we have gone through a lot. In between discovering Nicole’s loss and doing all we can for her, I gave birth to her brother Anthony, who seems to be hearing. Nicole has come a long way in her speech, but still has a ways to go. She is currently in a preschool class where she is the only child with a hearing loss. She has an FM system that the teacher uses with her and also has the services of a hearing itinerant. We are primarily an oral family, but I use sign language with Nicole to help her understand and to clarify things.

Since discovering her loss, I have been doing lots of research on the internet to help me understand her loss better and what we can do to help her acquire language skills. I have also become active on a few list serves for parents who have deaf/hard of hearing kids, as well as become involved with a playgroup for deaf/hard of hearing kids. There’s a lot to do when you have a child with a hearing loss, a lot to learn. We’re lucky because we have found some great support systems. Nicole and I are learning together creating a special bond that doesn’t need words. . .just love.

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