There are certainly some questions that need to be answered. Only time and testing can answer a lot of them. I have some frustrations with the fact that his hearing aid ear is still not being attended to because his audiologist is so concerned about the implant. While I understand that the implant is most important, I also think the aid should be set to perfection if we really do believe the implant is no longer serving him correctly. The audiologist at Liam's school is MUCH more equipped and readily available to do the testing and make things better for him, but he has to be a student or an alumni there to be able to take advantage of those audiology services. We may have found a loophole to make that happen, and I'll respond to that shortly.
If he is NOT having failure issues with his implant, why are we starting to see changes in his hearing capacity across the board? What could be happening to change what was once working so well for him? After attending a one hour workshop with the director of Liam's school, I implemented some of her ideas and started running some little at-home tests of my own. Because of that, I was able to send an e-mail to his whole team and get the ball rolling with open communication between the Dallas team, the new team, and Liam's school. It's so pivotal in my opinion that every one of the players involved in a child's education have open and free communication with one another. Sometimes something as simple as an e-mail sent to everyone can be all it takes to get that happening. Once the communication starts working and team members compare notes, it's easier to decide what to do next.
I've copied and pasted the e-mail into this post. The people involved are Kristi (CJ's teacher from TX), Betsy (director at Liam's school), Sara (CJ's current teacher of the Deaf), and Linda (CJ's former AVT). Here is the context of each e-mail:
We talked about this a little bit at the time but there was just SO much going on in your life and all I really had was just a "feeling" so I felt a bit silly and didn't push it.
I noticed around the end of Jan. into Feb. (the semester before you moved) that I didn't think CJ was hearing very well. No big deal, I thought. Everybody was sniffly and stuffy, CJ included, around that time. So, I thought maybe his hearing-aid ear might just be stuffy or full of fluid.
However, I never saw any improvement. So, yes I did sort of do some informal "testing" games with him. I can't give you specific percentages but we played with noise-makers of different pitches (somewhat like with Liam) and with my voice and with trying to find the location of sounds.
Here's what I noticed:
1. CJ was not hearing as well as I thought he did before.
2. He seemed to be relying on his hearing aid more than his processor.
3. Then there was a period of time when he didn't have his hearing aid and he seemed to have the most trouble during that time. This just confirmed to me that he was depending on his hearing aid much more than I would have thought.
4. He was relying heavily on visual cues, facial cues, and lip-reading. If he had his head down looking at his paper when I said something, I almost always had to repeat it when he looked up.
Things I noticed with his processor were that it didn't seem to matter to him whether it was on or off or if he was in the "wired" room or not. I don't mean that he didn't care if it was off his ear/head. He always wanted to be wearing it. I mean that it didn't seem to make any difference in his hearing/understanding.
As far as his hearing aid, he didn't seem as attached to it or overly-concerned that it wasn't working but he did seem more lost and was not hearing as well without it.
That last semester CJ just didn't seem his usual outgoing, curious self. He misunderstood more single words and asked "what?" more frequently. He seemed just a bit less confident, more tired, a little less excited about everything.
Keep in mind this was all during the time when things were very chaotic and confusing in his whole little world. All his things were packed in boxes, the house was in the middle of selling, you were gone some (to see the house and I think Liam was hospitalized then, too), he was staying with different people, AND he had been very traumatized by the tornado drill at school and was freaking out at every storm we had and we had alot of them that Spring. So....it was kinda understandable that he wasn't really his usual charming self and appeared a bit more tired and not as "with it".
I just feel awful to think that maybe his processor wasn't really working that whole time!
As far as having more than six electrodes being overwhelming to him - I don't see that as a problem at all. Can't they control how much it's turned on and do it slowly so that he isn't overwhelmed? They turn it up/on as he can tolerate it. Is that right?
PLEASE let me know everyone else's input and keep me updated!
Love to all,