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Monday, December 8

Tough Decisions

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.

12 comments:

Thankful Paul said...

Hello

Laurie said...

Wow. What a difficult post this was for you to write. Do not feel guilty for putting it out there because I know you are not alone.

I, too, changed audiologists for the very same reason you did because I wasn't getting the attention or quality of sound I was expecting. My former audiologist had no "bedside manner" and always wanted to do thing "his way." He was very protective of his work and would not let me see his computer screen or explain anything to me. And did not put me in the booth until after my second implant!

I know this is hard for you and Mr. Dad because you don't know how or what Drew is hearing and he can't tell always you. You two are being great advocates for Drew. Perseverance is the key! It will pay off! Hang in there!

Ashley Norkus said...

As an adult cochlear implant user who has gone through this exact thing with an audiologist telling me that was just the way it had to be and how I had to learn how to hear through terrible static becuase he could not figure out how to get it away. I commend your persistance. You are the one in the end who knows Drew best. After not being able to understand speech with my implant for almost 2 year (I thought that I had an internal faiilure after going through it once before) I went to a new audioligst who took the time to sit with me and withing an hour we realized that I needed a new processor. No one had checked the processor before.
Good Job Mom!!!

Michael said...

This posting should be required reading for all parents of CI kids.

You absolutely did the right thing. As an adult cochlear implant user, I can tell you that solving implant problems often requires careful detective work: that is, systematic observation and experimentation. Since Drew can't do that for himself, you need to do it for him, and you need an audiologist who works with you as a partner instead of ignoring you. At one point I went to an audiologist in NYC who essentially told me, sit down and shut up and I'll tell you what map is right for you. I never went back.

Your account of the /m/ versus /o/ problem is a beautiful example of the kind of detective work one has to do. I'll give you another example. At one point I started hearing clicking sounds while wearing my processor. Not what one wants to hear! My first hypothesis was that it was a defective battery, but it happened with all of my batteries. It took a few days to work this out, since the clicks happened at irregular intervals. Sometimes there'd be three or four in an hour, sometimes none in a day. Then I started wondering if it had to do with temperature, since it *seemed* to happen more often when it was warm. But after a while I abandoned that hypothesis because it happened sometimes when it was cold too. Then, when I sat in a hot tub with the processor on (I don't recommend this, but hot tubbing is a social experience), I realized I was getting a lot of clicks. New hypothesis! Moisture in the processor. I put everything in a dri-aid kit. No more clicks. Problem solved.

In the summer I use dri-aid kits regularly now.

I was able to solve that particular problem by myself, but obviously more complex problems like the /m/ versus /o/ issue need professional expertise. If the audiologist won't work with you as a partner, you look for a better audiologist.

I agree with Ashley: Good Job Mom!!! And by the way, if you can teach Drew how to do that kind of thinking for himself when he gets older, it will be one of the best gifts you can ever give him.

Mike Chorost

Kristen said...

Great job being an advocate for Drew. He is so lucky to have wonderful parents who will stand up and make these tough decisions for him.

leahlefler said...

A mother's instinct is usually right! Good job advocating for Drew, and getting his map adjusted so that "O" and "M" are separate sounds again.

We have had to switch EI providers (the first one wanted to kick Nolan out of the system at six months of age) and it was the best thing we ever did. Our audiologist has been wonderful, though we have a hard time getting accurate, stable hearing levels on Nolan (currently, "light" and "slide" sound the same to him, so I think we need to check on those high frequencies again). And he just has a moderate hearing loss!

Bill and Shelly said...

Hi
Thanks for sharing. If you don't mind my asking, are you going to go to Columbus Speech and Hearing? Who did the mapping? You can email me the answer, krull5@wowway.com

Hope to see you soon.

Shelly

tammy said...

Thank you for this! I have second guessed myself over a professional so many times but am coming to find out with Aiden (and therefore, with my other children) that truly, a parent shouldn't second guess. We know our children. Period. You both are such great advocates for Drew and I truly appreciate you sharing stories like these, as hard as they may be to write. You all are amazing!

Christian's Mommy said...

Ugh. Isn't it frustrating when your kid is hearing at age level and people don't understand why you are still pressing for services? I totally understand where you are coming from. I'm glad that you found an audi that actually is working with you :)

Ben's Mom said...

Thanks so much for sharing this struggle with us. I am continuing to learn so much by your example of educating and advocating. Good luck with all of the changes. We are never "done" with all the big CI decisions are we?

Merry Christmas!

Anonymous said...

Hi
I love love your blog. Wish i would have seen it a year sooner... I live in Cleveland Ohio and my son is now 26 months and has both implants for over 1 year now. He can not stand wearing them! After seeing this I am wondering if his mapping is wrong or something else. I only have one mapping person in our program.. We may have to switch hospitals....

thanks again. You are sooo lucky Drew is doing so well...

gina

Melanie said...

I could have written this post. Thank you for sharing.