During lunch today, we watched the documentary "The Sound and the Fury." I had heard about the program, but had never actually watched it. It was a very moving film about the struggles of a Deaf family, trying to decide on a cochlear implant for their five year old daughter. We watched the follow-up ("Six Years Later") as well. Prior to this trip, we had always been concerned about Nolan having a progressive hearing loss, since his ABR report read "rising to normal" and his current hearing levels are not normal. We now know that his loss is far different than what was originally diagnosed, so we will not ever have to worry about getting a cochlear implant. Still, the documentary was very emotional for me- any time I see a baby getting a hearing test, it brings back all those raw emotions.Speaking of hearing loss, we had very repeatable bone conduction scores today. His sensorineural loss is borderline normal (25dB) sloping to moderate in the high frequencies. He is 45dB at 2000Hz and 40dB at 4000Hz. This is the part of his hearing loss caused by damaged hair cells in the cochlea, to my friends who aren't as familiar with hearing loss.
Nolan's actual hearing level is in the moderate range for one ear (about 50dB) and moderately severe for the other ear (about 65dB). This means he has a large air-bone gap- indicative of a conductive hearing loss. This is probably the cause of the fluctuation in his hearing levels.
Now that we have two identical bone conduction tests, we will have to make an appointment with our ENT to discuss the results. I'm not sure where this will lead us, but I am indescribably thankful to John Tracy for this test. I can't imagine going on indefinitely with incorrect information. Without John Tracy, who knows how long it would have taken us to get an accurate picture of Nolan's hearing loss? We might have stumbled along for quite some time, anxious and stressed over the perception of a progressive hearing loss. Now, we know that he is likely to fluctuate a little, but unlikely to progressively deteriorate in hearing levels.
We had great lectures on behavior management and expressive language- I will share more detailed notes on those lectures when I bring my binder home tomorrow. I left it in the classroom, and I don't trust my brain to remember any detailed information!
We did have a parent-teacher conference today, and it was only full of good news. Nolan's shyness in class is dissipating, which is wonderful. While still a tad shy, he is playing with the other kids and even giving answers in class. Everyone agrees that Nolan needs an FM system, and that his speech and language are excellent. We're not quite sure what to do about his IEP request when we get home- we still want an IEP, but he may not need the number of therapy sessions we currently receive. We have an IEP role-playing session tomorrow, and I am looking forward to that class.
I thought it was interesting that one of the things the teachers work on is "natural" language. While we strive to teach our kids to speak in complete sentences, sometimes a shorter answer is better. For instance, if you ask a group of hearing children, "Who wants a cracker?" the answer would be, "I do!" and not "Yes, I would like a cracker please." Natural speech patterns are an important part of language development, too. I never thought about this aspect of speech, but it is vital for social interchanges.
We didn't go far for an outing tonight. We joined several families on the lawn in front of the Annenberg apartments and let the kids play. Then we joined Lucas and Noah for a walk to La Taquiza. We really enjoyed the food and the company!
Nolan had some trouble going to sleep tonight, requesting several stories, declaring he was scared, and then having a major tantrum about his "ears." He wanted them back on, and they were already in the Dry and Store. I think one of our next Experience Books will be about bedtime routines and hearing aids. He really doesn't like to be without his aids right now!
5 comments:
Everyday I read your updated posts, I am even more amazed at what this clinic hosts for deaf/hoh families. They sound absolutely incredible! To think of the peace of mind they've brought you that Nolan's hearing loss isn't progressive and a true diagnosis with a whole new outlook. Incredible. I can't wait to read your posts on behavior management. Whew. We could use a personal class on that right now with my wild little man, who by the way, has just learned to scream! lol
As unsettling as it can be, it's always good to have more information. X's surprising aided test results and his poor expressive language score from JTC created a great deal of upheaval in our minds, but we would rather reopen a previously closed CI door than to stumble past it.
Watching Sound and Fury, and listening to both the young adult and children's panels gave us the broad perspective we needed in order to combine the new information with the existing, although meshing it all together can be taxing to the brain!
Is your brain full yet?!!
Thanks for the update, I am so happy to know what Nolan's issues are. God bless JTC. Hugs, Mom
Week three already - time is flying!
I'm laughing at xraevision's question about "is your brain full?" because I had been thinking of an old Far Side comic with a punch line like that... if I can find it I'll scan it in and post it.
You'll be processing all of this for weeks... months? So happy you're getting this experience. And isn't it interesting that right now Nolan is valuing his HA's so highly?! (Not trying to take them out constantly...)
Julie
I'm glad you results with the bone conduction issue. And the movie was quite compelling to see the perspectives of both sides of the spectrum. I wasn't able to participate in watching it with my JTC group (which included X's mama) but I did watch it before.
About your IEP. I'm not sure if they showed it yet but they may tomorrow, they showed us small booklets made by other parents of "getting to know" your child. Especially if they are will be playing a major role in providing the right services to your child. I haven't started it yet but I have another few months before doing so, although it works for IFSP also. My suggestion is to start on it so it'll be ready when your IEP meeting starts. It's great that you'll have the information fresh in your brain when you get home and know what to ask and what to ask for on behalf of Nolan. List everything down prior to the meeting so you don't forget anything!!!
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