The next decision we were faced with was whether to try hearing aids on Jake. Children with Auditory Neuropathy are generally not hearing aid candidates because robust OAE's show that the cochlea is functional at the outer hair cell level, but Jake had the probable secondary sensorineural component to his loss. His was not a moderate sensorineural hearing loss because of the auditory neuropathy. It was a loss in addition to having auditory neuropathy. He had robust OAE's but they were not normal. We feared the aids may damage his hair cells and increase his hearing loss but felt helpless by not doing anything when it came to amplification. After much thought we spoke with Dr. Berlin and decided to to have him fit with low gain compression hearing aids that wouldn't have enough gain to cause further damage to his outer hair cells. Getting earmolds made was our next project. Jake was not happy when they pushed the cool playdough-like material into his ear, but we managed to keep him from pulling it out untill the material was hard enough to remove.
When he was 18 months old he received Rexton K-Amp BTE's with 20dB flat gain and 105dB output, his first hearing aids. When Dr. Berlin put the aids on him he just sat there looking around the room. As we were chatting, he walked over to Dr. Berlin with this puzzled look on his face and handed him the aids. It was as if he were saying "We are leaving now, you can have these back." We put them back in and left for home. He took them out several times a day for about two weeks but then he started to get accustomed to them and would bring them to you if they were knocked off. We joked that they must be quite tasty because they seemed to wind up in his mouth a lot. We searched the daycare playground twice for disassembled parts and by some miracle found them. We also made two trips to the emergency room to x-ray for missing batteries.....So much for childproof doors!
Jake modeled his new hearing aids for us and as you can see he was still having a problem with the wild hair.
We could tell a difference in his response to sound right away. He made all sorts of noises on the way home that first day. He began making cooing sounds again and within a week he was trying to babble back to me. I was elated that he liked them so much but still afraid of the outcome. Our speech therapist saw a difference in his response to sound as well.
About a month after he was aided, he said his first word, "Ock" as in rock, as he was leading me across the room toward the rocking chair. He knew what he wanted and was able to tell me!!! The only difference between this time and others was that I understood what he wanted. That was probably the first time I felt sure we were communicating since his diagnosis had been made. He continued to be more vocal with cooing and babbling becoming more spontaneous. He also seemed to like the hearing aids more and more. But there was always the worry if the aids were helping him or hurting him. We just prayed that they didn't and kept working with him in language acquisition.
Unfortunately, after making the decisions to use cued speech and try hearing aids, we discovered that the resources we wanted weren't readily available in our area. My husband and I quickly realized that we would have to leave our home and family to gain access to the services we desired for our son. Moving away sounded so much better than devoting a great deal of our time and energy fighting the system for services; time that should be dedicated to Jake and his needs.
After much research, we found the areas of the United States that had established Cued Speech programs in place. After several cursory visits to North Carolina, we made the decision to relocate to the Raleigh-Durham-Chapel Hill area. On one of the trips, I had interviewed for nursing jobs and when the call came in that I was hired, I realized that I had less than three weeks to resign from my job, sell my property, move to North Carolina and start the job. In late November 1995, we packed everything we owned in a moving van and started our new adventure.