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Tough Decisions

Posted Dec 08 2008 1:29pm
I guess the title really says it all. We have made some really difficult decisions recently regarding our Cochlear Implant team and the service level being provided to Drew. I am always reluctant to share these types of situations, as I have no way of knowing who is reading this blog, and I don't want to upset or offend anyone. However, I don't think that we are the only family that will experience these types of issues, so I want to be candid and share our story, in hopes of helping others in our similar situation.

We shared with you a few months ago that we have been having difficulty with Drew's new therapist through our Cochlear Implant team. After continuing to try to work through the issues, it became abundantly clear that this new therapist was never going to provide the level of service to which we were accustom, and have grown to expect. While she improved in areas of "lesson plans" and "homework," we continued to struggle during the session themselves. There were points of uncomfortable silence, where it seemed like she didn't know what to do or say, and was searching for something else to do.

I never felt like this new therapist ever really made an effort to "learn" or understand Drew. One glaring example, during our final session, was when working with the Ling 6 sounds. Drew has clearly mastered detection and imitation of these sounds over the past 17+ months. When we do a Ling 6 test with Drew, we test each ear individually, at a distance of 9-12 feet, with background noise, like the television or radio. During our final session, this therapist thought testing the Ling 6 at a 1/2 foot distance in silence, with both ears on, would be a good idea.

Overall, I felt that she really lacked the personality it takes to be the type of therapist our hearing impaired child needed. She was very passive and quite shy. And personality, no matter how many meetings I request, and suggestions I give, is not something that can be changed. So we decided to readjust our therapy schedule. We are now seeing our therapist through the Early Intervention program weekly, and we have added a weekly (in home) music therapy through We Joy Sing. Drew continues to have preschool one day a week, and beginning in January will be taking a gymnastics class. All of this combines to make an excellent language calendar, and keeps our boy very busy!

While we have been going thorough this struggle with therapy, we have also been having problems with Drew's audiology team. I have to say that this whole process has been very difficult. It's so difficult sometimes to advocate for your child, especially when he or she is exceeding expectations. I have often felt like my concerns are automatically dismissed because my child can talk at age level.

The problems surrounding audiology began in September, at Drew's mapping appointment. It had been nearly five months since Drew's last mapping appointment, and turned out to be a total disaster. Drew was asked to complete a language evaluation, which took the first 50 minutes of the appointment. This could have been completed at home, or therapy, to not waste precious mapping time. Then Drew's audiologist proceeded to look at his maps for about 10 minutes. That's 10 minutes combined. For both ears. Our audiologist wasn't even going to put Drew in the sound booth! She did so only at my request. The booth test lasted about three minutes and then we were sent on our way. During the appointment, Drew's audiologist only made adjustments to the map of his right ear.

I calmed myself down over the next few hours, but could not shake the feeling that Drew was not properly mapped. I contacted other parents, who all found the fact that no adjustments were made to an ear after five months quite odd. Then, the paperwork from the appointment was sent out incorrectly, indicating that changes had been made to his left ear, when in fact they were made to his right. The whole ordeal left me questioning whether or not Drew was appropriately mapped.

Within days, Drew's Dad and I began to notice that Drew was confusing the /o/ and /m/ sounds. Even at a close distance. His therapist noted this as well. This was alarming, and I brought my concerns to Drew's audiologist. I insisted on have a full booth test done for Drew, including results for each ear individually. Drew's audiologist was very open to this and scheduled the appointment for the following week. But the booth test was again disappointing, as she only tested Drew with both ears on, and only did environmental sounds. When the audiogram was complete, she handed to it me and said that everything was fine. I immediately noticed that Drew was hearing at 25db for the low frequencies, and around 20db for higher frequencies.

I continued to question Drew's maps. The one thing I knew was that Drew continued to confuse the /o/ and /m/ sounds. I felt like something was wrong with Drew's maps.

I decided to take Drew for a second opinion, at another CI program in our state. I did not tell the audiologist of any of my concerns. I simply wanted her to evaluate, on her own, Drew's maps, looking for reassurance that everything was OK. This new audiologist started the cochlear implant mapping appointment with a booth test (something I had asked our old audiologist for, to no avail). The new audiologist was able to test each ear individually, with the booth test lasting over 50 minutes! Coming out of the booth I felt such a sense of relief, knowing that we would have a very clear understanding of exactly what Drew was hearing with each ear.

Within minutes of analyzing Drew's two audiograms, the new audiologist looked and me and said, "Are you noticing Drew confusing the /o/ and /m/ sounds at all?"

I nearly feel off of my chair. "Um, yeah, that's exactly why I'm here," I thought. I told the new audiologist that Drew had been confusing those two sounds. Within fifteen minutes the new audiologist had made the necessary adjustments, and I watched as she tested Drew in front of me, go from confusing the sounds to clearing recognizing them. My confidence was instantly restored in Drew's maps.

But I left the second opinion appointment that day with a tough decision to make. Should we continue to have Drew mapped with his original audiologist, or move all of our services for audiology to a different hospital? This question has weighed heavily on my mind for the last two months. I have thought about this question a lot, and have finally come to the decision that we are going to move Drew's audiology services to another program.

I have had several conversations with our old audiology department about my concerns, and I was really starting to feel like there was an attitude with our program like, "Lady. Your kid can hear. What else do you want? Maybe he will confuse the sounds sometimes. At least he can hear something." At one point, we were even told that we have really high expectations. It just became clear that no matter what I do, I will never have the confidence in our former audiologist as a result of this situation. And since our program only offers one mapping audiologist, we have no choice but to go elsewhere.

I guess the moral of this (really long) story to parents is to follow your gut instinct. If you don't feel like you child is hearing something, go with that feeling and have it checked out. If we would not have sought out a second opinion, who knows when Drew's map would have been adjusted appropriately, and think of all the language time we would have lost as a result. As parents, we know our children best and really need to follow our feelings. This has been a really hard decision to make, as we have such respect for our surgeon and the program he is trying to build, but we have made a decision in the best in interest of Drew.
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