Cheese

Tony and Allison Emerson, Kaitlyn age 6, Sydney age 4, Reagan age 3

Reagan was born on June 28, 2000 just after Kansas began Universal Newborn Hearing Screening. Our family has no history of hearing loss and we almost left before the hospital was able to administer the hearing test. Our pediatrician was made aware of the results of the test and wanted to make sure Reagan saw an audiologist by the time she was six months of age. We had our first visit with the audiologist at two weeks of age. We tried to do an Auditory Brainstem Response (ABR) with her sleeping soundly, but were unable to keep her from stirring on two attempts. She went in for a sedated ABR on September 13, 2000. As the test was being conducted my husband was querying the audiologist about cochlear implants. We knew very little about them, but we had heard about them. When we left the office, we had heard the audiologist say to the ENT we were working with something about “80”. We took that to mean she had an 80% loss. We didn’t know she had not responded to 80 decibels.

As this news began to sink in and we were able to get more complete information on the significance of her loss, we were in shock. It was a difficult time as a parent because we were looking at all of our child’s life skills, education needs and future in our hearing society when she was a mere three months old. It was very difficult, but as I look back now, it was one of the greatest gifts I have been given as a parent. I had time to position myself. I knew what I wanted for my child well before she was ready to enter those situations.

The week after the hearing loss was confirmed, we began early intervention services. There was not a seamless transition from identification to services as would be expected. Early childhood people were in no short supply, but it took some real maneuvering to get an educator for the deaf to begin working with Reagan in our home. Once we began working with the teacher of the deaf, we were bombarded with a choice for a communication method. This seemed like an ominous decision because Reagan’s family is all hearing. I wanted nothing more than to give her the same opportunities that her two older sisters would have. This was the force inside me that kept me probing for more information. Most of all I wanted her to learn to use spoken language. I began sign language class soon thereafter also. I was overwhelmed at the thought of my child’s ability to communicate resting upon how well I could learn to sign. The services for her to become an oral communicator we were asking for seemed atypical at best.

Reagan began wearing bilateral hearing aids at the age of four months. We had done the testing at three months, but we were seeking another opinion which was obtained at Boystown National Research Hospital in Omaha. Since our audiologist had little experience with babies, he met us for the clinic exams and testing. Their collaborative efforts were able to help us receive the best possible hearing aid fitting. It was quite a chore to keep hearing aids on an infant who was not yet sitting up. They would feedback almost constantly because she would grow before we could get new molds back from the manufacturer. She never responded to stimulus in the booth with her hearing aids.

Our quest for Reagan to learn to speak was moving forward on another front as well. She began testing in January to determine if she was a candidate for a cochlear implant. After several visits over a couple of months, we held a team meeting of all of the professionals working with Reagan. It was after this meeting that a date for cochlear implant surgery was set. I had a lot of reservation as this is a major invasive surgery. The many people I spoke with had a common tone. What did we have to lose? The teacher of the deaf was quite skeptical that she would receive the benefit we were hoping for. It was great to have her as part of the team because she was asking all of the tough questions and keeping us realistic.

Reagan underwent surgery on April 26, 2001. She was nine months then and the youngest cochlear implant recipient ever at the Midwest Ear Institute. She had her device activated a month later. From very early she withstood the sound she was receiving well. The audiologist would turn up the volume and sensitivity and she never turned back.

It was at this time that we began utilizing the services of St. Joseph Institute for the Deaf in Kansas City. They have a rich tradition of teaching deaf children to use their voices. They do not utilize sign language or any other visual cues as they train children to use the hearing they have as a result of hearing aids or an implant. This was the next logical step for us as we strove to maximize her benefit and encourage her to use her voice. She attended twice weekly sessions with a speech/language therapist from St. Joseph. We utilized our health insurance benefits and received some financial assistance from AGBell. Infant-toddler services in our community continued to provide the teacher of the deaf. Eventually we were so pleased with St. Joseph that we discontinued the other once weekly visit as it was unable to be scheduled at a convenient time for our family. The infant-toddler program then paid a little over $1,000 towards our year of services at St. Joseph.

One of the most frustrating things our family has faced is not that we could not avail ourselves of the services that we wished for our child, but public funding did not support our choice for an oral education. This is an on-going battle as we have recently begun to work with our school district to develop an appropriate IEP. The climate in our state with regard to hearing loss does not equally support families. We remain hopeful that more and more public entities will try to collaborate with families choosing the oral method.

I would say Reagan began to respond to her name within a month of activation and her progress was so steadily improving that I could not even tell you when she began to speak. One of her first really clear words was “cheese” because she would have it for a snack very regularly. She now tests at age level for expressive and receptive speech and language skills. She has pretty clear pronunciation and picks up a lot of incidental language. She knows she cannot wear her device in the swimming pool and asks to take it off. Most mornings she asks for her implant and wants to put the batteries in by herself. She is a very typical three years old.

Reagan will always be deaf. Her implant did not make her a hearing person. She will always work harder to communicate than her hearing peers. She will need people to understand that there are limitations to what she can hear and she will need to be aware of environments where communication may break down. Newborn Hearing Screening did not allow us to cure our daughter of her hearing loss. It allowed us to gain an insight at the earliest opportunity into a world many of us have little awareness of. We could not be more thankful that we knew from birth that Reagan had so much to teach us.


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