Kat Reading

Kat Reading

Monday, July 13, 2009

Week 3, Day 1

Today we talked about behavior management and we watched "Sound and Fury" and "6 years later" and had a discussion afterwards. Miss Kat also had an audiology appointment.

I have seen the movies before and I blogged about my thoughts here: http://misskatsmom.blogspot.com/2008/11/sound-and-fury.html The one thing I would like to add is that while I think it is great that they decided to get the implants and that it did make a huge difference for their family, I HATE that the hearing Grandma comes off as the "hero". I HATE that she thinks she was right all along and that the parents were wrong and that the implant really does "take away the problems of deafness". That is crap and that woman is a huge b****! If a family wants a CI for their child, that is their decision and if a parent decides that it isn't for their child, that is ok too. It isn't the decision I would make (obviously!) but I don't know their life or their child, so it isn't my business.

Miss Kat's audiology appointment was a speech test with just her hearing aid. She got 20%. With her CI and hearing aid together she got 70% on the same test just a few weeks ago. That is a very big difference. I think after the summer is finished she will score even better. She is making measurable progress every single day. Even the other parents are commenting on the difference in Miss Kat's spoken language skills. So, it wasn't fun watching her fail the test, but it is good evidence that she needs another CI. Just looking at Miss Kat's audiogram, it looks like she is hearing very well with her hearing aid, but she is just not able to use what she is hearing. The tones in the booth, she can detect pretty softly, but once it is put into language, she just isn't getting it. The audiologist mentioned that Miss Kat may have "cochlear dead zones", but that they can't test for that. The idea is that if there is a (or many) spot inside the cochlea that has no hairs (or completely useless hairs), there is nothing to transmit the sounds. So, you can turn that hearing aid up and up, but no matter how loud it gets, it will not be able to transmit the sounds, and they will never make it to the brain. The implant bypasses all of that.

I asked the audiologist if it was uncommon for people to have "good looking" audiograms with hearing aids, but not to be able to use it. She said not at all. That is the reason that the requirements for implant candidacy have been "loosened". Even a few years ago (and some places today) Miss Kat would not have been a candidate. She had too much residual hearing. But it isn't about the numbers, it is about how the person is using the hearing they have. (What good is aided hearing that does not provide any good information? I get angry comments about "ruining" Miss Kat's hearing when she had "so much left". But, really, what good was it doing her? So, she could hear a very loud clap when her aids were off, and now she can't....ok....but know she can understand spoken language through LISTENING! That seems like a bigger benefit to me.)

I really go back and forth on the bilateral issue. I feel like having some residual hearing is helpful, and that having 1/2 acoustical 1/2 electrical hearing would be the best of both worlds, but in reality if she is missing 50% more with her hearing aid, that just isn't worth it. My biggest misgiving is the surgery. Everything went perfectly the first time and it feels like "tempting fate" to try and do it again. Though, a parent here pointed out that she has had enough bad things happen to her (at birth) to last 10 lifetimes! It is a hard decision.


Elizabeth said...

Thanks for blogging so many great details about your time at JTC. I really enjoy following along with you as you experience their program!

Jamie said...

I can vouch for what you said about it is not the numbers, but how well you use what you have. I was able to wear hearing aids well past a time when I should have been unable to, because I had been taught to use what little hearing I had. I remember being told that there were kids with more hearing than I had, who could not use hearing aids.

leah said...

The rest of us really do appreciate your posts from JTC! I can't imagine trying to make the decision for bilaterals- the benefits for Miss Kat do seem to be great, but it is hard when kids go through surgery (even really safe surgeries). Nolan's been sedated 5 times and every time my heart is in my throat until he's in recovery.

Sending lots of positive thoughts!!!

Marny in Maryland said...

A friend of mine who is a wonderful pediatric audiologists (and mom of two bi-CI, bilinguage/bicultural kiddos (and three hearing siblings who sign well, too!) always says that putting on hearing aids is like turning up the volume on a radio. If it is tuned between the stations, all you get is louder static. It seems like the kids who are struggling the most get the most benefit from being bilateral (in my anecdotal experience -- no research there!)

Good luck with your decision!

Anonymous said...

I've seen the Sound and Fury movies and I disagree with you about the grandmother. Remember she has walked in the shoes of a parent raising deaf kids! It was killing her that her son was refusing CI technology now that it is available. I bet she wishes it was round 30 or 40 years ago when her kids were small. And who better to teach Heather spoken language than someone who has done it before and has a chance to do it again? Three cheers for Grandma!!

David said...

I have also seen both S&F movies and I agree with Miss Kat's mom and disagree with Anony.

As I have said in a comment several months ago on another blog, the interview with the grandfather, I saw several big red flags for abusive family situation. The grandfather came across as controlling and threatening. If they came across like this in person, I'd definitely report them to Social Services.