Tuesday, July 13, 2010

John Tracy Clinic, Day 2

There is no way to write down everything we learned today, because it would be the Longest Blog Post Ever. Instead, I'll try to capture some highlights from the day.

Last night, Nolan whispered. For the first time, ever. Since every preschool classroom at JTC has observation rooms, I'm guessing this little skill was learned while Nolan was not napping. The teachers were telling him to be quiet, and a lot of whispering was practiced. With the soundfield system and the frequent modeling and practice, Nolan figured out how to whisper. So last night, while he was coloring, my little boy whispered for the first time. This shouldn't make me tear up in an emotional sob-fest sort of way, but it does.

Ring Around the Rosie

Today was extremely busy, with lectures on language and communication options. Language was broken down into four main compartments, including vocabulary, syntax, semantics, and pragmatics. Assessments are available for each of these areas, and each area is vitally important. Syntax doesn't come into play until children reach the 3 word sentence level of speech, but Nolan is at or beyond this level, so syntax should be modeled and monitored. Pragmatics (the social rules of speech, both verbal and non-verbal) are equally important (example: shouting "Hooray!" at a funeral= highly inappropriate pragmatics, even if you really didn't like Aunt Mildred).

We discussed communications modes and the pros and cons of each approach. We also discussed pre-lingual vs. post-lingual deafness and conductive vs. sensorineural hearing loss. Later, lectures will discuss how deafness affects cognition, social interactions, etc. We got to play a game using phonology to remember some of the components of oral language (using the letters E N G I B S to create words-bonus points if you can use all the letters to create one word). Most of us have a great understanding of phonology and are able to create words from these letters.

Dennis and I met with Nolan's audiologist today, and we discussed his hearing loss fluctuation, chronic ear infections, and the question of a possible conductive component to his loss. The audiologist was so wonderful, and explained many things for the first time to us. While some behavioral fluctuations may occur in the testing booth, the former presence of OAE in his right ear at birth compared to the 55dB threshold now observed indicates progression. As for the conductive component, they are going to run bone conduction first, to get a good idea of the underlying sensorineural loss. They're also going to run testing at 250Hz, which we've never had before. Nolan has a lot of confusion with the /m/ and /n/ sounds, and both of these occur closer to the 250Hz mark. It will be interesting to see what his thresholds are in that range!

We are also going to get an aided audiogram for the first time. I have always been concerned because Nolan's hearing aids are put into the mysterious programming box and then are deemed "set" for his loss. The audiologist at John Tracy explained what the mystery box does (a sound recording of a man reading an article is played at different volume levels and the computer programs the aids accordingly). This is called speech mapping and is the most reliable way to program digital aids. Aided audiograms are also done at JTC, which is really nice because it gives us a better idea of what Nolan is hearing with his aids. The aids do suppress the pure tones a bit (they're designed to do this, since they want to suppress "nonsense noise" and focus on speech), but the aided audiogram is definitely in the ballpark of what he is able to hear with his aids on. Nolan's aids currently show that they're set a bit too low for the soft speech (when put into the programming box), so they're going to make some recommendations on the soft speech settings after doing his hearing test.

We also did a listening check, the first time I've ever seen one done with the full complement of Ling Sounds and the first time I've been shown how to properly conduct a listening test. I didn't know, for instance, that we should conduct the test and then gently squeeze the sides of the hearing aids. Sometimes a loose connection is only apparent when you squeeze the aids, and the sound will cut out. Nolan's aids are just fine, but it was a good exercise to go through.

We also met with Nolan's SLT today, and she was wonderful. We talked about our goals for Nolan and what we want for his IEP. While most three year olds are a bit young for an FM system (failure to report static with the device), Nolan is an excellent reporter and has the language skills to report on a non-functioning device. We worked with his SLT when Nolan was released from school, and did a mini-lesson together. We described items by their characteristics, then Nolan had to guess which item was in the bag. Once he guessed correctly, he would select a toy and then guess if it would sink or float- then he got to drop the item into a bowl of water to see if he was right. This was good practice for us, and reassuring since our own speech therapist does this sort of activity all the time with Nolan.

After school, we collected our coffee pot (hooray!) and headed back to the Annenberg apartments to play on the front lawn with the other kids. Dennis headed back up to Oxnard and will return on Thursday, so Nolan and I headed out to play on the lawn with the other families. We went to dinner with Lucas's family , and enjoyed some wonderful sushi. I'm pretty sure there was nothing more adorable than Lucas saying, "I love sushi," because hearing those words out of a two-year-old's mouth is just impossibly cute. Nolan and Lucas decided to have some heated debates on the walk, which mainly consisted of the word, "MINE!" Lucas would see a bus and say, "Big bus! My bus!" Then Nolan would get rather incensed and shout, "No, my bus!" This happened with nearly every item the boys saw along the walk. We kept talking about being nice to our friends and how the city buses really belong to everybody. It must have made some sort of impression, because Nolan came to me tonight and said, "I not yell at Wucas. He my fwiend. We share." We'll see how that translates to reality tomorrow!

Spoons and cups: improvised tub toys.

As a little public service announcement, if you are the parent of a deaf or hard-of-hearing child between the ages of 2 and 5 years old, get your application into John Tracy now. The 2011 program already has several families signed up and the 2012 program also has family interested. This is definitely not one of those experiences to procrastinate on- if you have the ability to travel to Los Angeles, do it. Trust me, you will not regret it- no matter what language level your child is at, John Tracy will help them get to the next level. Trust me, they're exceptionally good at increasing the skills of both parents and children!

10 comments:

MB said...

I've been waiting for your post all day. Yeah! :)

Isn't it amazing how much they can stuff into one day?

mamatoadeafmiracle said...

I'm vicariously living again through your JTC experience. I feel like I've forgotten everything since we've returned because LIFE has continued. Totally glad you got on the JTC "get into JTC NOW" bandwagon. Wishing all the best and keep blogging!

Auntie said...

Now I am tearing up! What a great program and I am so glad that this grandmother can get the news of what is happening day by day.

Auntie said...

Leah this is fantastic, reading your post brought tears to my eyes. I can't wait to get home to log in and see the new events. Thank you JTC!

Julia said...

I'm looking forward to in-person demos when you get back to NY. Michelle is a very good audiologist and I think she has everything set up just about ideally for Ben, but Nolan is a particularly hard case to program for, and it must be great to get more explanation and another audi's perspective.

leah said...

It is very interesting. This audi isn't sure why her "box" is showing that his aids are set too low for the 55dB speech, but Michelle's box shows that they're set perfectly. It could be that the aids aren't holding the programming. The speech at 70dB is fine, but obviously we want Nolan to hear softer speech, too. The fact that his hearing fluctuates in the high frequencies doesn't make it any easier.

The audiologist here is going to do another hearing test before any recommendations. She can't adjust Nolan's aids since Unitron won't give their programming software to the clinic, so she'll make recommendations and then we'll discuss with Michelle.

Herding Grasshoppers said...

Leah,

It sound absolutely wonderful. I love Nolan's comments about being Lucas' "fweind".


And here's your word:

Beings.

Julie

xraevision said...

Thanks for the long post! I hope you find the stamina to keep them coming because I am reliving great memories with you (and crying just a little bit).

So many comments to make, but I'll keep it brief. Congratulations on being aggressive about getting one of the few coffee makers, but moreover, to Nolan for whispering. This is huge progress for any deaf child - yay!!! And, thanks for mentioning the Sink or Float game. We didn't play that, but it sounds like a great language opportunity for X that we would both enjoy in this hot weather.

Megan said...

Wow. Sounds great. Thanks for posting all those tips. We love our FM system for Luca, and put it on for music mostly. It's especially great in the morning when he wakes up and we can put it on and no one else can hear it.

Great tips on checking the aides, too.

Luca and Nolan must be on the same wave link. Luca just started whispering this week. He says, "Shhhh, Annie's sleeping."

Lucas'Mommy said...

I'm so happy for you that you guys will get an aided audiogram!

We also really enjoyed dinner and the boys bantering... I think it went a little better on Wednesday...