Parents of a deaf child share their stories

My daughter, Alicia, was born deaf but not diagnosed until 18 months. At that time she was found to have a severe to profound sensorineural hearing loss and was fitted with two hearing aids. The hearing aids gave her some usable hearing, and we quickly plunged into the world of special education, total communication, and hundreds of other experiences we could never have imagined. So let’s listen to how parents of a deaf child share their stories.

At age 6 it was determined that Alicia’s right ear was “dead,” not able to process sound at all. She was fitted at that time with a programmable hearing aid, and what followed was a wonderful year of hearing at a much-improved level. Throughout this time Alicia was mainstreamed into a regular classroom at our neighborhood school. In April of 2012 Alicia experience a sudden, unexplained drop in her hearing. Even with her hearing aid, she was no longer able to hear most of the sounds she had for the last year.

We have always presented Alicia with a total communication setting. She has been exposed to sign and voice from the very beginning and has for the most part chosen to be an oral child. She seemed to realize from a very early age that if she signed to most people, they were not going to know what it was she wanted. Receptively, she has relied on sign-in the classroom and we have always used it as a backup for times when she was unable to understand the verbal communication.

When Alicia’s hearing dropped to the level where hearing aids were no longer providing adequate amplification we were faced with what we saw as four options, 1) change to using sign as our main means of communication with Alicia, 2) continue to use a total communication method stressing oral communication, 3) stress oral communication only, 4)investigate a cochlear implant and continue with either total communication or oral communication.

I want to stress that I am a firm believer that there is no one “right” answer for the best means of communication for a deaf child. Each situation is different and every family needs to carefully evaluate what is best for them and their child. We had, to be honest, and realistic about our expectations, our strengths, and weaknesses as a family and our ability to adjust to the various options. This isn’t an easy process for anyone and it was one of the most stressful processes we’ve had to go through but we were fortunate enough to find a fantastic female mentor.

The first option, relying on sign alone, did not seem realistic to us. The main concern with switching to a completely sign-based language with her was a social concern. It seemed unrealistic to us to assume that everyone Alicia meets in her life will learn to sign to communicate with her. Even her family (immediate and extended) has not gotten beyond rudimentary signing during her life. At school, learning isn’t a problem if there is an interpreter, but communicating with hearing friends is difficult if not impossible if there is not a common method of communication. See also this post about the VISION project where also help was provided in a great way. For our family, this was just not the right choice.

The second and third options were more realistic since they would involve the least amount of change both for Alicia and for our family as a whole. It also would give Alicia the ability to continue to communicate in the mode of which she was most familiar. These options seemed possible, but we knew that it would mean a huge commitment of time and effort. And it doesn’t matter whether words are spoken softly or roared loudly. Learning to communicate orally with a profound hearing loss and little or no amplification can certainly be done, but in most cases, it’s not easy. Knowing the personalities in our family and Alicia’s strengths and weaknesses, this option didn’t seem to fit our needs either.

This left the fourth option- a cochlear implant. I knew other children who have implants and had been impressed with their progress but had never considered it as an option for Alicia. As much as I wanted my daughter to be able to continue to be very oral, there was still a part of me that felt I was somehow attempting to “fix” my daughter and that I was making a decision for her that no one should make for another person. The whole idea of surgery was frightening- and as educated about hearing loss as we were, this seemed to be a real step into the unknown. After much thought, we decided to go ahead with the pre-evaluation for an implant.

This was a very frustrating time, much like the time when we first learned Alicia had a hearing loss. As parents, my husband and I wanted very much to do something right away. However, things don’t always work that way. We were fortunate to be able to get a referral fairly quickly from out audiologist and went to House Ear Institute. We were also fortunate that House Ear is relatively close by (about a half-hour drive). It took about a month to work through the insurance issues and getting appointments made for the implant screening. I know now from talking to other parents that this was really pretty quick- but at the time it seemed like forever.

The screening supported what we already knew. Alicia’s hearing had dropped to a level that made her a good candidate for an implant. Also in her favor were the fact that she had had good amplification in the past and was used to sound. The hardest thing for us to deal with was that because her left ear had never had any exposure to sound, the surgeon recommended implanting the ear that did have some residual hearing. We had hoped that this wouldn’t be the case- that they would be able to implant the ear where we weren’t “taking away” any hearing. Now that we had all the information, we had to make a decision. Although we knew the risks were minimal and the benefit most likely would be great, this was still not an easy decision to make. But, in the end, after talking with many people about the doubts, we decided to go ahead with the surgery.

The other decision to be made was which brand of an implant to get. Most people (other than the company reps) said that there was no noticeable difference in performance between brands. After reading information on all the brands available and talking with the audiologists, we decided to use the Clarion brand implant. The main reason for doing this was that at the time it was the only implant FDA-approved for use in children- the other brands were still in FDA trials. The practical advantage to this was that with the approved implant we wouldn’t have to follow any set protocol as far as follow-up visits and testing but could proceed based on Alicia’s progress. Also, the main headquarters for Advanced Bionics (who make the Clarion implant) is located within a few hours drive of us. Somehow having a “local” company made me feel more comfortable.

Alicia’s surgery took place first thing in the morning on July 21, 2014. Everything went smoothly, and she was sent home the same afternoon with a big bandage around her head and not in a very good mood. The large bandage came off within a day or two and then she was left with just stare-strips holding the incision together. She was most upset that the side of her head had been shaved, although because she has long hair, it wasn’t very visible. The hardest thing for all of us was that she now had no hearing at all. Communication was a struggle, it seemed like we were overworked, and we were all stressed by the whole situation. Alicia’s grandparents volunteered to come and stay with her during the day so that my husband and I could return to work when needed, but by the next Monday, Alicia seemed ready to go back to her summer camp program.

The only setback came the following Thursday (10 days after the surgery). Alicia woke up in the morning with the entire side of her face swollen up. We immediately called House Ear, and they said to bring her in right away- this was not normal. It turned out that she had gotten a very severe infection which caused the incision to pop open. It was painful for Alicia, and there was the talk of the possibility of having to put her in the hospital or of having to go back in and redo the implant. I felt guilty at this point because this was all the result of the surgery and now Alicia was in pain and unhappy. Luckily, the infection cleared with antibiotics (and quite a few trips back and forth to House Ear) and we were able to go ahead and proceed.

Alicia’s first mapping took place over three days (Monday, Tuesday, Friday), a month after surgery. She was a real trooper- the mapping is a long, tedious process. The audiologist made if fun by incorporating games, but it was still a drain. For the most part, things went very well. Alicia had some discomfort with one of the electrodes, but they were able to set the map at a level that allowed her to get a good amount of sound right from the beginning. Alicia adjusted to it very well, and just sort of took it in stride that she had some sound again.

Between the Tuesday and Friday visits, she told us she heard birds chirping and keys jangling in the car! These were sounds she hadn’t ever heard even with her best amplification. On Friday, the audiologists did some discrimination testing, and Alicia was able to discriminate between various words with only auditory information. This was really exciting though we are in no way judges! It was clear that the implant was doing what it should and Alicia was adjusting well to it. The audiologist said that this was the progress they would normally expect to see at the one month visit.

Two weeks after her initial mapping, Alicia started back to school. She had used an FM system in the past with her hearing aids, but the audiologist recommended that she not use one at this time so that she could get used to hearing the real environmental sounds. Alicia also has an aide in the class who signs to her, so she was able to keep up to speed. Although some people are insistent that an implanted child not receive any signing (the thinking being that they will continue to rely on the “easy” signing rather than trying to focus on listening), we chose to continue to sign when necessary with Alicia. Having a history of how Alicia dealt with a total communication environment, we were pretty sure that this would continue to be a successful approach with her.

It turned out to have been a good decision to go with an implant that didn’t restrict us to a set protocol and testing. At her last appointment- two months after the initial mapping, the audiologist said that they had progressed to a level that they would have expected at six months and that there would be no need for visits for a while unless there were any problems. Alicia’s speech is noticeably improved. She has told her aide in class that she doesn’t need to sign for her at specific times during the day since Alicia can follow some of what is going on based on just her auditory input now. Alicia can communicate better with her friends. She hears sounds that we thought she would never hear- thunder, the dog panting, a door squeaking. Alicia is now able to use the phone in some situations, which we didn’t think would ever happen! She still has difficulty with the soft voices of some of her friends but does great with Mom or Dad. It’s so exciting to see her able to participate in an activity that the rest of us just take for granted.

So, thoughts from Mom at the three-months post “turn on”…getting a cochlear implant for Alicia was without a doubt the right decision. There are still moments when I find it strange to realize my daughter is walking around with this “thing” in her head and hooked up to a speech processor, but I think this is more my issue than hers. Alicia is still deaf, and she always will be, but her life has been so enriched by being able to hear with her implant- it’s just amazing. When I see Alicia’s face as she dances around to music that she can now hear- I know it was all worth it.