Saturday, July 31, 2010

Getting Ready to Fly Home

I have several John Tracy related updates, but not enough time to blog about them! I will write about our final days at the Clinic when I get home. Here are a few updates:

1. Nolan's ear is still infected, but not draining as badly as it was in the beginning. The Ciprodex drops are actually going into his ear (rather than floating on top of the fluid), so his tube is probably unclogged.

2. We took our final picture, said tearful goodbyes, and drove up to Oxnard for a final weekend with our family. We fly to Buffalo tomorrow morning.

3. Nolan's IEP meeting is on August 5, and the psychological testing will be done sometime on the 3-4th of August.

We are going to be extremely busy when we get home. Besides the typical post vacation clean-up, we have more than a few appointments on our plate. The general schedule is now:

August 3 or 4: Psychological testing for Nolan's IEP.
August 5: IEP Meeting
August 9: Sleep study at Buffalo Children's
August 16: Follow-up appointment with neurologist (for sleep study)
August TBD: ENT appointment to discuss conflicting hearing test reports
August TBD: Audiological testing from a third site to confirm bone conduction results

We are going to be busy, but it will be good to get Nolan's hearing situation sorted out, his amplification increased to the appropriate levels, and determine if his central apnea has disappeared (fingers crossed)!

Wednesday, July 28, 2010

Wednesday: What a Day!

I received an email last night stating that Nolan's IEP meeting will be on August 5. I have to make a call to postpone the meeting, because the school district has not arranged for the necessary formal testing on Nolan's behalf. If we do have the meeting on August 5, it will be a very short one. We can't objectively formulate goals without having the necessary data.

Nolan's slight ear drainage from last night did not disappear. He had some slight moisture in that ear this morning, so I told our JTC audiologist about the situation when we took him in for his aided audiogram. Since only his right ear was affected, they played the sounds over the soundfield through the left speaker. This way, his "good" ear was closest to the sound source. Since a soundfield test isn't reliant on the "bad" ear to perform, we were able to get a reliable aided audiogram.

The audiologist looked in his ear after the test, and let us look to see what a nasty ear infection looks like. The drainage was getting worse- I figured he just had serous otitis media. Kids with tubes sometimes have this happen with fluid build-up. Unfortunately, he had acute otitis media with effusion. We spent the rest of that morning on the phone, calling his ENT in New York to get a prescription for Ciprodex drops.

As for Nolan's aided audiogram, it was abysmal. His aided thresholds are not set well for his level of loss- he should be getting normal hearing across the board with his level of loss. Instead, his aided audiogram revealed that he is hearing at 55dB for the 250Hz point (moderately severe), at a moderate level for the 500Hz frequency, normal for 1000-2000Hz, and at a moderate level (40-45dB) for the 3000-4000Hz frequencies. His aided speech awareness threshold was at 30dB, which is a mild hearing loss. I'll include pretty charts and graphs when I get more time. The "magic box" showed that his aids were set too low for the low and high frequencies.

When we get home, we'll have to talk to the ENT about the significant conductive component to Nolan's hearing loss, and we'll have to talk to the audiologist about his aided audiogram results. Our audiology clinic doesn't believe in aided audiograms, but Nolan's hearing aids are obviously not set correctly. Truthfully, they're set quite poorly-and we would never have known this information without John Tracy. We'll have our hands full with sorting out information when we get home.

We managed to make it to the auditory skills lecture today, and I was thrilled to see Nolan's video with his speech language teacher. I want to convince her to move to Western New York. Perhaps the beautiful fall leaves will convince Miss C. As long as no one tells her about winter, we'll be in the clear! In the video, Nolan displayed auditory skills with selecting items from descriptive terms- an emerging skill. He also displayed his emerging sequencing skills. We don't have many auditory goals for his IEP, so the auditory evaluations will allow us to formulate some appropriate goals for the little guy.

At lunch, our ENT's office still hadn't called back about the ear infection. Luckily, I am in a school filled with parents who have similar ear issues. Ask around, and you'll have a free bottle of Floxin thrown your way (with the label written in a foreign language- Floxin with a twist)! I crept into Nolan's classroom to give his ear some drops during nap time. Poor kiddo- he really hates ear drops. Still, the sooner I get this treated, the less likely he is to perforate around the blocked tube.

We met with his SLT after class today, and went over his testing results. He is age appropriate (or better than age appropriate) for his receptive and expressive language. He has a delay in articulation, which is no surprise (we had the same results from our testing at home). We also got some scores for auditory skills and informal information from the PLE (created by Daniel Ling for assessing children with hearing loss). We will get a report which will aid us in creating goals for Nolan's IEP.

During this meeting, I spent a small amount of time on the phone, convincing the nurse practitioner that I knew that Nolan had an ear infection (yes, purulent material draining from an ear with a tympanogram showing a blocked tube is probably an indicator of infection- as is seeing the infection through an otoscope). I did manage to get a prescription for Ciprodex sent to a local Rite Aid, so we were soon on our way to relief.

After school, we hopped over to the good playground on Flower Street, then to Fatburger to have dinner with our bloggy buddies. Then we were off for our tour of inner-city Los Angeles neighborhoods in the attempt to find our Rite Aid. On the other hand, Nolan did get exposure to words like "felony," "petty theft," and "under arrest." At least, I think theft is what the police cruiser was sent to Rite Aid for... we saw two more police cars in active crime-prevention mode on the way home from the pharmacy.

Nolan is definitely a bit "wily." He threw a MASSIVE tantrum in Ralph's grocery store, because he wanted to go to McDonald's. He wasn't hungry, he just wanted to play on a playground, was in pain from his ear, and was very, very tired. To the other customers in Ralph's today: truthfully, my child is not typically a screaming, writhing, hissing fit of fury.

We played on the lawn for a few minutes in front of the Annenberg Apartments, then got Nolan inside for a warm bath, ear drops, and bed. I read while he snuggled up to me and finally gave up the fight against sleep. He's out cold now, and hopefully the antibiotic drops will start to work their magic tonight.

Tomorrow is the last full day at John Tracy. Time has flown by all too quickly, but the information and support we have received are invaluable. This is the very best thing we have ever done for our family- we know a LOT more about Nolan's hearing loss, we know about what we need to do to help him reach his full potential, and we feel confident in his ability to be successful.

I am going to miss this place immensely when we leave!

Tuesday, July 27, 2010

Tuesday at the Clinic

Checking out Santa Monica

We had an awesome panel with two school-aged graduates of the John Tracy Clinic today. One boy was leaving elementary school and the other was in the fourth grade- both were absolutely brilliant. Hearing words like, "I used to be interested in astronomy, but now I'm more interested in the paranormal" from a nine year old is reassurance that no professional can give. Not only were these kids amazingly witty, but they were also confident, diplomatic, and had mad self-advocacy skills. Their mothers were pretty amazing, too.

We also had lectures on U.S. Laws and Deafness, and watched an I.E.P. role play while discussing I.E.P. ideas. This is rather pertinent, since I just found out Nolan's IEP meeting is on August 5. Yep- four days after we get back from John Tracy! We are going to be quite busy, with Nolan's IEP, sleep study, and an ENT appointment that I still have to make. As a side-note, Nolan is complaining about his right ear today and there is some drainage. Beautiful- I will have to call the ENT from Los Angeles and try to get a Ciprodex Script filled if the drainage keeps up.

I'm too tired to write about the IEP lecture in detail, but here is a key point:

In the United States, the parent is considered an equal member of the IEP team.

Any material submitted by the parent must be considered when creating the IEP. This includes independent educational evaluations, informal and formal language assessments, etc. Be cool, professional, gregarious, and know your rights.

Since Nolan has a permanent sensorineural hearing loss in addition to a permanent, fluctuant conductive loss, an FM System is absolutely essential for his functionality in the classroom. This is Priority One on his IEP. Since his aids cannot be set appropriately for his random fluctuations, an FM System's ability to improve the signal-to-noise ratio is vital. Speech therapy is also good- for monitoring and maintenance (even if he is currently age appropriate- it took intensive therapy to get him to where he is now).

After school, we headed out to the Santa Monica Pier and enjoyed the sun, wind, and salty air. Nolan loved riding a few of the rides they have on the pier. He also saw a bunch of rocks off the coast and was convinced they were a whale- we let him think it was a whale, since he is quite keen on them at the moment. We stopped in for dinner at Gilbert's again, since there is no such thing as too much Mexican food. We're having a difficult night since Nolan is complaining about his ear hurting and having trouble sleeping- I really hope this isn't a nasty infection starting again (right ear- the same one that perforated through a tube in 2008). We'll see what tomorrow brings, I suppose.

Rides on the pier- definitely more fun than IEPs!

Behavior Strategies for Children with Hearing Loss

I absolutely loved this John Tracy lecture. It was one of Monday's lectures, and I was glad to get additional tips for handling behavior issues. Nolan is actually my "easy" child (less strong willed than Matt), but he is more aggressive than his older brother. We try to do the main points offered in the lecture: consistency, routine, positive reinforcement, etc. on a regular basis. There were also several points I had never considered before, including:

  • Clear communication. Long lectures are pretty useless with young children. They don't have the language skills or the attention span for it.
  • Time outs are not effective for "refusal" behaviors. For instance, a child who refuses to clean up his toys will not benefit from a time out. Time outs should be reserved for more aggressive behaviors.
  • Having realistic expectations. If you go out to dinner and your child hasn't had a nap, then you have to expect a meltdown.
  • Prevent inappropriate behaviors when possible, with the establishment of logical routines (i.e. dressing before the TV goes on) and with visual aids. This includes the creation of experience books and wall charts to explain daily routines.
I am embarrassed to admit that I had never made an experience book before coming to John Tracy. I had read about them online, but thought they had to do with emerging vocabulary and not overall language and behavior development. There were several ideas for experience books to help children deal with behavior, social development, and transitions.

A "No No" book could be created for problematic behaviors at home. For instance, if your child constantly throws toys across the room, an experience book could be made with pictures (or drawings) of the child doing the behavior and the consequences (Mommy's unhappy face or an upset friend). Reading the book when you are not "in the moment" helps cement the idea that this behavior is unacceptable.

A "Yes" book could be created with pictures of your child doing appropriate things. Holding hands when crossing the street, picking up his toys, or sharing with her friend.

A "Go" book is useful for errands or multiple trips. This isn't exactly a "book," but a series of laminated pictures on a ring. You can change the pictures for the errands at hand, and use it in the car to show your child what is on the agenda for the day: "First we're going to the post office, then the doctor, then the grocery store." Knowing what is going to come next (and how many trips are expected) helps children cope with a day of errands.

A Routine Wall Chart, reading from top to bottom, is great for very young children. The really little guys don't have left-to-right progression yet, but they instinctively understand the top-to-bottom sequence. You can post pictures of your daily routine on a wall, and remind your child of what is coming next: "After we take our bath, it is time for bed."

I also heard about a concept called social stories from another mom in the program- I plan on trying this one out with Matt. Social stories were originally developed for children with autism, but they work beautifully for children with hearing loss and typically developing children, too.

Monday, July 26, 2010

Movie Day

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!

Sunday, July 25, 2010

John Tracy Picnic and the California Science Center

Watermelon Hits the Spot!

Siblings Can Play Games, Too.

Nolan Plays in the John Tracy Tree.

Lucas and Nolan Check Out Fish at the Science Center.

The California Science Center is Awesome!

Getting Ready for Week Three

We had a really quiet weekend in Oxnard, enjoying some time with family. I'm not "freaking out" about Nolan's bone conduction scores any more, which is a good thing. I am actually feeling much better about the whole thing, since the test at John Tracy actually makes quite a lot of sense (the conductive component explains the fluctuating results in the booth at home). It can be hard to integrate new information when it is so different from what you've been told in the past.

But as one very wise mama said, "Nothing has actually changed. We just know more about it."

This is very, very true. It is also probably the most comforting, sensible thing I could have heard. While we're learning more about Nolan's hearing loss, nothing has actually changed. It has always been this way, and we are just now getting more accurate information about the type and configuration.

The very best news is that he has been amplified correctly, which is the important thing. Plus, he's just doing phenomenally with his speech and language- another indicator that his hearing aids have been set correctly for his loss- whether or not it is conductive or sensorineural (or both, in our case).

As to the "conductive" component, we have no idea why there is one. Nolan had no fluid at birth (he had an ENT appointment the same day as his ABR, and his tymps and otoscopy were clean). My best guess is that the conductive problem lies with the middle ear bones somewhere. His CT scan was completely normal, so it isn't a problem that is apparent with any modern imaging techniques.

While we are going to discuss this finding with our ENT, we probably won't do anything to find the specific cause of the conductive loss. Nolan would still have to wear hearing aids anyway, so unless the benefit is great, we'll avoid any more surgeries. Of course, there is a great part of me that hopes to find the cause of Nolan's entire hearing loss picture- but I'm not willing to put him through more surgery to find out why. His hearing aids work for him, and that's all that really matters.

Tomorrow's session includes lectures on behavior management, expressive language, a film (The Sound and The Fury), and support group. Nolan is really excited to get back to John Tracy, especially after the John Tracy picnic today. He loved running around with the kids! He also got to eat his first In-N-Out Burger and liked watching the magic show. As soon as he got home, he said, "I want go back John Tracy!" He really loves his teachers and friends- it is going to be hard to leave when this week is over!

Saturday, July 24, 2010

Nolan's Newborn ABR: Questions

Reason # 1,056,078 why I love the John Tracy Clinic: when you have questions, you get explanations.

Obviously, getting news that contradicts years of information is always a tad difficult to accept and digest. So our wonderful JTC audiologist sat down with me to explain why she has concerns about Nolan's diagnosis. Since Nolan was found during the newborn hearing screening procedure, his first test was an ABR. Essentially, Nolan's ABR states (paraphrased):

Pure tone responses were obtained at 60dB for 500 and 1000Hz. A click response was obtained at 35dB for the high frequencies. OAE indicate reduced cochlear function from 500-2000Hz, with present OAE from 3000-8000Hz (indicating normal cochlear function). This is consistent with a mild/moderate sensorineural hearing loss rising to normal in the high frequencies.

This sounds like a nice, consistent picture. Unfortunately, there are a lot of questions regarding this information:

1. No bone conduction testing was performed. There is a way to get objective bone conduction scores, because you can run bone conduction during an ABR test. For children with a moderate loss at birth, a bone conduction should always be run to verify the type of hearing loss.

2. Nolan's best response in the high frequency range was 35dB. This means at some point in the higher frequencies, his best hearing was at 35dB. This is not "normal hearing" in the high frequencies. While ABR's have a correction factor for pure tone responses, there is no correction factor for a click. His hearing, therefore, was never "rising to normal." A high frequency sensorineural component was always present- this is important for other reasons (determining hearing loss progression, for example).

3. While I thought several behavioral bone conduction testing had been performed at BHSC on Nolan, it turns out there has only been one bone conduction audiogram ever performed. When Nolan was two-and-a-half. In other words, Nolan has displayed a hearing loss since birth, but no one bothered to run a bone conduction test for 2.5 years. The only reason bone conduction was finally performed at BHSC was because he had another "drop" in his hearing that was unexplained. This test showed a rising pattern, so that is still an inconsistency. Of course, if you have diagnosed a child with a rising sensorineural loss for three years, you might be more likely to interpret bone conduction scores in a certain manner.

4. The OAE presence/absence on Nolan's ABR report. This was my main sticking point. I figured that Nolan's hearing loss showed no OAE in the low frequencies and present OAE in the high frequencies, so that was consistent with a rising sensorineural loss. I have since been educated on the meaning of OAE, and when they can be present vs. not present. Essentially, the present OAE in the high frequencies do not necessarily indicate normal hearing. Present OAE can be found with mild hearing losses. Also, absent OAE do not necessarily indicate sensorineural hearing loss. While Nolan was missing his low frequency OAE, a conductive hearing loss could also cause a failure to obtain OAE responses. Essentially, the sound can't get through to the cochlea to generate the OAE (and presumably, the OAE responses would have a hard time finding their way back to the probe). If you can't conduct the sound through the middle ear, you aren't going to generate OAE. This means that his OAE responses at the time of his ABR were not sufficient to determine a conductive vs. sensorineural hearing loss- bone conduction was needed.

So what DO we know about Nolan's hearing loss?

1. It is most likely (mostly) conductive in the low and mid frequencies.
2. It is a typical sloping sensorineural hearing loss in the mid-high frequencies.
3. It is probably not a progressive loss.
4. It is a fluctuating loss.

I will talk about congenital, permanent conductive losses in another post (no, it can't be fixed).

Our picture is changing, which is always hard to accept. At least I have been given information to understand our son's initial testing (and what should be standard protocol for a child with a moderate loss at birth). When we return home, our next step will be to find an independent audiologist, hide all of Nolan's hearing test results, and get a third bone conduction test. If the independent test matches John Tracy's results, we will have a definite picture of Nolan's hearing loss configuration/type.

Thursday, July 22, 2010

Cutting and Pasting

We had several interesting lectures today, including lectures on the development of speech sounds, literacy and the deaf child, and how to create experience books. In support group, we wrote letters to our hearing children, telling them how much we love them- the letters will be read to the siblings in the sibling program on the last day of the clinic. After this session, we all went to the larger conference room and created two experience books.

The first was made by stacking four sheets of paper and then folding it over, so there was a "lift the tab" type book. The pages are stacked vertically (the blue and orange book in the picture), and you place all the text on the exposed tabs. The pictures are placed under the tab, so you lift it to reveal the picture after you've read the text. This reinforces the "listening before looking" method, and also demonstrates that text has meaning, since only the text is visible on the outside of the book. This type of book is very useful for discussing sequenced activities (you could talk about the steps in getting dressed, for example). One parent has made one of these with different items that need to be accomplished in the day, and the book has a reward chart on the back. When all the items are checked off, the child earns a reward (such as a sticker). Nolan's is blank, because we didn't really have time to finish the books. When we get home, I think I will make a book about proper conduct in the car (we don't scream or throw sippy cups at Mommy's head, for example).

The smaller book was made from paper lunch bags. Three were stacked, with the middle sack facing the opposite direction as the top and bottom sacks. The book was folded in half and secured, and this creates a book with a page/pouch style. You can place items in the pouch that relate to the text on the page. This one is very clever, and I can't wait to finish this one. I might do ours with a hiking theme. On the page, we will talk about walking through the woods. In the pouch, I will place things like leaves, pictures of rocks, birds, etc. that we would see in the woods. On the next page, I could place a creek and put items like frogs, fish, tadpoles, and swimming trunks in the pouch. I'll post images when we finish our books (probably not until we get home, unfortunately)!

John Tracy also had a book fair today (always bad for my wallet, since I love books). They also had adorable hats on sale for $1 each, with the John Tracy logo. For $1, I couldn't pass them up- I bought four of them.

Unfortunately, our SLT had to cancel our appointment today due to an emergency (I hope everything is OK)! We didn't get to talk about Nolan's audiogram, but we'll take that as it comes. I'm not sure whether or not I believe the new audiogram. We've had a few bone conduction tests at BHSC that show a rising sensorineural loss based on bone conduction, and his ABR at birth showed a rising loss with absent OAE in the low frequencies and present OAE in the high frequencies (consistent with a rising sensorineural hearing loss). I've drawn a very crude example of the difference between the JTC results and our audiology clinic's results:

As you can see, these are pretty conflicting results. I suppose, in the end, it doesn't really matter if he has these odd bone conduction scores if his air conduction is about the same and his aided testing is fine. He does have an air-bone gap, but I'm not keen on putting Nolan through exploratory surgery since he'd have to wear hearing aids no matter what (even if they could find and fix a conductive problem with his ossicles, he still has the sensorineural loss). And if his air conduction hearing aids work well for him, I couldn't see putting him through the implant surgery for a BAHA (bone anchored hearing aid). Plus, I don't even know if BAHA could handle the high frequency sensorineural loss that JTC is showing. There are a lot of unknowns, and it is difficult to integrate such different information into what we know about Nolan's loss.

All we do know is:

1. If JTC's results are correct, then Nolan has been misdiagnosed for three years. Since his CT scan is normal, he has type A tymps when his tubes are out, and he currently has no fluid and he does have patent PE tubes, there is no discernable cause for the "conductive" loss. He also lacks all OAE, and has since birth in this region. The only way to see if his ossicles are affected (since the CT scan was completely normal) is to do exploratory surgery, which has risks of its own. Especially since Nolan has central apnea.

2. If JTC's results are not correct, then we have to wonder why we are getting such variable responses from Nolan. At BHSC, it seems like he has lost some sensorineural hearing, or has a mixed loss. He has also had more than one bone conduction test at BHSC (by more than one audiologist), and these results have been consistent with a rising slope.

His results at BHSC are more consistent with his ABR/OAE testing at birth than the JTC results, but his testing seemed pretty reliable (his attention was well focused) at JTC. On the other hand, he was really well focused at BHSC when we got the rising slope bone conduction scores.

We have two completely different results, with very different interpretations... and no way to tell which is the "correct" answer. Push come to shove, we'll just leave his hearing aids where they are and ignore the conductive component, because he is developing speech and language with no problem with his current hearing aids. There's no way I'd put the little guy through more surgery for no real gain. On the other hand, if we could find the cause of the conductive component (if truly there), it might explain the cause of Nolan's hearing loss (if he had a congenitally fixed stapes or something of that nature that wouldn't show up on a CT scan). And if a BAHA would be significantly better than an air conduction hearing aid for him, it would be worth exploring.

When you have a kid whose hearing loss profile changes every time you step into the booth, you go through the grief process over and over again- including the denial/anxiety portion. If only these tests weren't so subjective!

Of Baseball and Car Fires

Nolan's earmolds are Dodger Blue

It's never a good sign to have your car start spewing out smoke as you're waiting in a thick line of traffic, attempting to enter the stadium. On the other hand, it allows for great language lessons: Car Fire, Overheating, Clutch, Nasty-Burning-Smell, and OMG-Are-We-Ever-Going-To-Park were discussed heavily.

Fortunately, we were able to find a parking spot soon after getting through the parking booths. Unfortunately, the car was still smoking and we were quite far from our "pavillion" (though we didn't know this at the time). Dennis popped the hood and we all agreed that we saw smoke. I'm pretty sure there were car parts in there, too- I know as much about cars as I do about the inner workings of the space shuttle. All I know was that smoke was coming off the stuff under the hood, and that is generally not good.

We decided to let the car sit there and cool down a little, so we headed up to the stands. The other two families were already there, and we ate some free Dodger Dogs, popcorn, and peanuts while watching the game. We stayed just until after the "Take Me Out to the Ballgame" song. Matt was extremely tired and we were a wee bit concerned about the car spontaneously igniting on the way home. Luckily, it seemed to drive well (despite the horrid burning smell) and we arrived safely home.

Today, we have our support team meetings, then a lecture on experience books and a Scholastic Book Fair. My bookcases at home may never forgive me- I have a ridiculous love for books, so I am sure a few will come home with us. We have a lecture on speech assessments, then a lecture on literacy and the hard of hearing or deaf child. I also have an appointment with Miss C., Nolan's SLT. She has completed his language and articulation tests, so I am interested to see his scores (I understand he did very well, so that is always exciting news)!

I do have to say, I love John Tracy. While we got completely different information about Nolan's hearing loss yesterday, we are not left high and dry. We are going to discuss the discrepancies with Nolan's SLT, we have other parents to talk to, and his audiologist is going to try to get him in for more booth testing so we can get a better handle on the situation. We'd also like to get an aided audiogram, but like at home, his changing hearing loss characteristics usually means that we spend too much time in the booth trying to get his unaided levels to ever get around to aided levels. We're trying for a third audiology session (he has a second session on the 28th of July). If we can get consistent information here, we'll have to take it to our audiologist and ENT at home, to discuss the situation. Adapting to such radically different information about your child's "condition" can be difficult. If true, it is exciting if it can be "fixed," though Nolan's sensorineural component can never be fixed. I'm not so thrilled about the possibility of going from air-conduction aids to a BAHA system (an implanted system for permanent conductive losses). We'll have to see what the repeated testing shows, and we have learn about all of the options, pros, and cons before making any decisions.

I'm off to brew some coffee before Nolan wakes up- it is going to be a busy day today!

Dennis left for Oxnard at 5:30am today, taking a very tired Matt and Smokey the Car with him. I'm not sure when he'll be back- probably on Friday afternoon to pick Nolan and me up.

Wednesday, July 21, 2010

Audiological Angst

With a child who is hard-of-hearing, understanding what he can hear unaided vs. aided is often quite confusing. There are many times that Nolan shows a response to something (with his aids off) and we wonder if this whole thing has been a great big mistake. That he has normal hearing after all, and the tests have been one big giant error. Other times, he acts totally deaf, not turning to people calling his name or to other sounds that he "should" hear. Then we worry that he has lost more hearing, and this can cause a great deal of stress.

The one thing that gives us reassurance is consistent booth test results. After all, if the booth tests are consistent, then we can be fairly sure of the testing methodology. While we've had some fluctuation in the high frequencies with Nolan's hearing, his low frequencies have been fairly stable. His bone conduction scores have also always been stable, with his scores going from 50dB in the lows to 30dB in the highs. This is consistent with his ABR at birth, and with his OAE results at birth (absent OAE in the lows, but present in the highs).

That was true until today. Nolan's audiological testing threw me for a complete loop today. His bone conduction scores were the exact opposite of what they've been in the past. Nolan tested at 5dB at 250Hz, 25dB at 500Hz, and 25dB at 1000Hz.

Big difference from 50dB, yah?

And so now, it looks like this all might have been one giant, colossal mistake. Could Nolan's loss have been conductive since birth? He had no fluid or ear infections at birth, and his CT scan shows a normal ossicular chain. So really, it doesn't make any sense (especially in conjunction with the missing DPOAE in the lows, which were present in the highs). Sure, he's had some fluid and infections since he turned about 1 year old, but his first tests were prior to all the infection hullabaloo.

The amount of anxiety this produces is insane. For instance, the type of device that Nolan is using might be inappropriate if his loss is primarily conductive. A BAHA would be a more appropriate hearing aid for him (if this is true). Or, possibly, the conductive component could be corrected if the source could be found. With a 60dB conductive loss (his air conduction thresholds are fairly similar to his test in May), something is drastically wrong with his middle ear system. This kind of loss isn't caused by tubes- especially since he's had it since birth. The CT scan showed a completely normal middle ear, so there isn't anything really wrong with the bones there.

Which is why I have a hard time believing the latest test results. With a normal middle ear (no fluid, normal ossicular chain, PE tubes), a child shouldn't have a 40-60dB conductive loss. Nolan also doesn't have a craniofacial syndrome, which rules out other strange anatomical things going on. Then there are the bone conduction tests obtained at home, which are all consistent and show a 50dB rising to 30dB loss (which is consistent with his air conduction booth test in May 2008).

Anyhow, Nolan is not hearing at a normal level. His air conduction thresholds are still moderately severe across the board for the left ear, and are at a moderate level for the right ear. Bone conduction does show a sensorineural loss for the 2-4KHz range, so he doesn't have an air-bone gap at the higher frequencies. For the first time in his life, he shows a sloping sensorineural loss.

Our audiology clinic at home shows a moderately severe to moderate loss, with a possible slight conductive component across several frequencies. John Tracy is showing a moderately severe conductive loss in the low frequencies, with a moderate sensorineural loss in the high frequencies. Now the question is: which one is right? Has Nolan been misdiagnosed all along? Or are we getting "false" bone conduction readings?

We may ask for a referral to House Ear Institute to sort this all out. If only there were an objective way to get bone conduction scores!

Tuesday, July 20, 2010

Party Time

Pizza party in the lounge this evening

Today's lectures at John Tracy were very interesting- including staff from the House Ear Institute for a Q&A session on cochlear implants and a lecture on auditory learning. While Nolan is nowhere near implant candidacy criteria, it was interesting to learn about the implants and to see actual displays of the three models available.

The auditory learning lecture included information on acoustic highlighting and how children use listening as the main input for developing speech: we speak what we hear. Many of the acoustic highlighting techniques are completely new to me. I never thought to whisper to a deaf child, and as it turns out, this technique enhances the audibility of higher frequency consonants. This was termed the "Buenos Dias" effect, because if you shout, "bUEnOs dIAs!" you can hear the vowels very loudly, but the consonants are masked. If you whisper, "BuenoS DiaS," you can hear the softer, high frequency consonants better.

After school, most of the John Tracy group headed out en masse to the playground on Flower St. This time, sunscreen and swimming suits were taken along for the ride- the kids had a blast playing in the fountain. I wonder what the locals think, with a huge caravan of strollers and parents wandering through a construction zone in Los Angeles. We'll do anything for a language opportunity (and a way to get the wiggles out)! After playing, everyone gathered in the lounge on the 3rd floor for pizza and pasta. We had a great time, though the noise made Nolan crazy. He huddled with Dennis and wouldn't play with any of the kids.

Nolan's "safety zone."

He was much happier when he ripped out his hearing aids and didn't have to deal with the huge amount of noise. We've noticed many issues with his ability to function in large groups, and my gut says that Nolan just doesn't deal with noise and high activity levels well. He does fine in smaller groups of a few children, or on an open playground with many children (which is not as noisy). If there is a lot of activity or noise in a room, however, he shuts down or tenses up. He's also shy and doesn't like attention focused on him, so he's much happier in Daddy's lap (or Mommy's lap) than socializing with the other kids. He did quite a bit better when many of the kids left. He also requested that I turn his hearing aids off when the noise level was too high- this is interesting, because he almost NEVER asks for me to turn them off!

A typical "overstimulated" reaction-laying down away from the noise!

Tomorrow is a very full day. Nolan has his first audiological testing at the clinic. They are going to run bone conduction first, so hopefully we will be able to get a good sense of his sensorineural loss. I always have anxiety around booth testing, since we tend to get rather fluctuant results. Frankly, Nolan's unaided hearing seems to be kind of random in "real life," too. I've seen him hear a toaster pop up from across the room (unaided), but then be unable to hear a friend calling his name from 5 feet away later the same day. I am hopeful that we will get a firm grasp on his "hearing picture," as it were.

I will not blog tomorrow, because we are headed out to a Dodger's game tomorrow night. Someone (very generously) donated Dodger's tickets to the John Tracy Clinic, and our family won a raffle. We get to sit in an all-you-can-eat pavillion, which is possibly the most awesome invention in baseball. Dodger Dogs, here we come!

Monday, July 19, 2010

John Tracy Clinic: Week 2, Day 1

It is way past my typical John Tracy bedtime, but I am going to try to fit a post in today. Dennis helped me set up our camera, so I am now able to post pictures with my blog posts. While I'm updating the blog, he is in the exercise room on a treadmill (marathon training waits for no man).

Today's lectures were great, and I was especially interested in the classroom amplification system lecture. Since we are going to have Nolan's IEP meeting when we return to New York, I wanted to get more information on the available systems for children with hearing loss.

The lecture covered soundfield amplification systems and personal FM systems. For Nolan, a personal FM system is a good choice because he is a hearing aid user and his private preschool program will not be able to provide a soundfield system. In addition (and perhaps, most importantly), Nolan has a lot of language. He has a lot of language, and he's not afraid to use it- he tells us if his hearing aids are not functioning properly or are not fitting well. He is a "good reporter," which is the most vital component to using a personal FM system.

There are times a personal (ear level) FM system is not appropriate. For very young children with cochlear implants, there is no way to verify the FM system is working properly with the implant. If there is static, the child must be able to report the malfunction in the system. For this reason, a soundfield may be a more appropriate choice for a young preschooler with a CI.

In any case, children in a classroom situation need some sort of FM system (soundfield or personal FM) to increase the signal to noise ratio. Children with hearing loss require the teacher's voice to be 15dB greater than the ambient noise for audibility. Distance, background noise, and reverberation all affect the signal's clarity, and the FM system helps to reduce these listening problems.

We also had a lecture on oral anatomy, feeding issues, and speech disorders related to oral motor skills. We discussed the detection and treatment of verbal apraxia of speech, and I learned of two speech therapy methods for speech disorders I had never heard of before (the Kaufman and Prompt methods). Apparently, the Prompt method is useful for children with developmental apraxia of speech and for children with low tone.

We concluded with a lecture on sensory integration, which is necessary for being able to make sense of the world (and therefore, necessary for learning). I won't go into detail (because this blog post would be ridiculously long), but I did learn two very interesting things today. The first is that in a recent study including 48 deaf children, ALL of the children demonstrated abnormal vestibular responses. This included children with all levels of hearing loss, so even children with moderate hearing loss levels showed an abnormal vestibular response. This makes sense, since the same hair cells that line the inner ear line the semi-circular canals. Still, I was surprised to learn that 100% of the deaf and hard of hearing children tested had varying degrees of vestibular dysfunction.

The second interesting thing is that the style of children's play has changed over the years. Children are more sedentary, which leads to less exercise of the vestibular system. What surprised me was the statement that deaf or hard of hearing children are more sedentary than their hearing peers. I asked why, and found out that the time in therapy ("sit and listen"), time in the car to appointments, and vestibular issues (balance problems) reduce the active play time of deaf and hard of hearing children. This is very true for Nolan, who has had various medical appointments/procedures, therapy, and long car trips. Fortunately, we are a family that desires natural play opportunities, so Nolan has been provided with lots of free play time and physical experiences despite the amount of time in therapy or in the car. The point being made during the lecture was that parents of deaf/hh children need to make an extra effort to ensure their children are getting the physical/gross motor play needed for healthy development.

Inspired by the lecture, several parents gathered together for a walk to a park on Flower St. A very nice mama from the June session told me about this park, so we headed out to find it. There was quite a bit of construction, and I'm sure several people were staring as we tried to cross a busy street in a construction zone with several strollers. We looked like an out-of-place toddler caravan! Luckily, we ran into a local family, and we followed them into the play area. The playground was truly amazing- there was a water sprinkler we had to keep the kids away from (next time, we'll bring swim suits), soft surfaces, a sound system that was activated when the children ran past sensors, spinning toys, a roller slide, and a million other neat play items.

Nolan and G. race down the slides!

Nolan and Noah play "chase."

Dennis and I returned "home," then took off for El Cholo, a Mexican food restaurant in Los Angeles. We are now thoroughly stuffed, and Nolan was very grateful for the rocket popsicle the restaurant gave to him. After dinner, we ran to Ralph's grocery store to pick up some more lunch items, then Dennis gave Nolan a bath while I ran the laundry. All of this activity explains why I am blogging at nearly 10:00pm in a semi-comatose state. It is definitely time to turn everything off and go to bed!

Sunday, July 18, 2010

Disney Weekend

I am so tired and I won't post much, but we had a great weekend at Disneyland. This weekend:

  • Matt became a Jedi in the Jedi Training Academy.
  • Nolan discovered that he LOVES rides, especially if they go fast.
  • Matt rode his first "big boy" rides: Star Tours, Soarin' Over California, and Mulholland Madness (first roller coaster).
  • Nolan screamed because we wouldn't let him ride roller coasters.
  • Matt met Mickey Mouse and hugged him.
  • Nolan met Mickey Mouse and screamed bloody murder, because any mouse that stands six feet tall must be a mutant bent on destroying the world.
Dennis has taken Matt back up to Oxnard, and Nolan is very deeply asleep. Tomorrow is the first day of our second week at John Tracy, and I am excited to get back to the routine. The routine is a bit of a relief for Nolan, and he when he heard me mention John Tracy at Disneyland, he cried, "I go back my John Tracy!" So there you go: John Tracy rates much higher than Mickey Mouse. I think Nolan misses all of his friends.

Tomorrow's lectures are on Classroom Amplification, Oral-Peripheral Structures and Functions, and Sensory Integration and Behavior. I'm off to bed, so that I can be alert for the information deluge tomorrow!

Friday, July 16, 2010

Just Plain Tuckered Out

Today was only a half day at John Tracy, but this is a very good thing for Nolan. He is quite tired today, and had quite the tantrum this afternoon once Dennis and Matthew arrived. I realized he must be quite tired (he's been sleeping in my bed to keep him from wandering the apartment at night). I laid down with him, and he fell asleep after some kicking, screaming, and throwing items from the bed. Dennis ran 17 miles this morning (in training for the Rochester Marathon), so he settled down for a nap, too. I took Matt on a little walk to see John Tracy, so he could understand where Nolan was going during the time he is at Grandma's house.

The lecture topic today was on behavioral regulation in children, which is a very important topic. A dysregulated child (not in control of their mood and impulses) will not be able to learn. For a child who is deaf or hard of hearing, having good self regulation is critical to maintaining the focus necessary to learn language and all other skills.

We learned that difficulty with sleep, feeding, transitions, etc. are all signs of dysregulation, and that there are two types of dysregulated behavior. One is the "hot" child (impulsive, hyper, explosive, poor sleeping). The "hot" child is often identified as having difficulties because of discipline problems in class. The "cold"child is one who is apathetic, depressed, withdrawn, and drowsy. Unfortunately, "cold" children often slip through the cracks because they don't ever present a discipline problem. Being "tuned out" presents just as much of a challenge to learning as being "revved up," so parents and professionals should be on the lookout for children who are showing signs of detachment or are frequently shutting down. There is also "mixed behavior," which is what Nolan is showing in response to his classroom when the activity level gets high. He literally will huddle on the floor if the class does "run around the rosie" instead of "ring around the rosie." He can't handle that much stimulation, so he becomes anxious and clingy. Luckily, Nolan's behavior is usually not of this type- it is only in the specific situation (lots of people + lots of noise and activity) that he gets so overwhelmed.

As a side note, I will post photos when I get home. I don't have the program or USB cable that goes to the camera, so there will be some "editing" when I get home to add pictures! In the meantime, check out Lucas's blog. You can see Nolan and me in some pictures on Day 3 (and Gilbert's El Indio Mexican Food is delicious)!

Thursday, July 15, 2010

Laundry Time (JTC Day 4)

Thanks to a certain mom who visited John Tracy for the June session, today's laundry was totally free. She sent me her unused laundry card, which is good since we have a lot of Crystal-Light tainted clothing. We are eternally grateful! I am trying to get everything tidy and all of the jobs out of the way, since we are leaving for Disneyland after school tomorrow (note: there probably won't be any updates until we're done with the House of Mouse).

Nolan is quite happy with his new books, and loves to read his "Friends, Friends, Who Do You See?" book. He can't name all of the friends in his class yet, but he gets excited when he sees Sam, Gracie, and Lucas. When he sees Lucas, he shouts, "That my Wucas!" He actually "reads" the routine book to us- this is probably because we've been talking about the classroom routine constantly since the first day.

Nolan really enjoys "Going John Tracy," as he puts it. Since we don't have auditory-verbal therapy at home, he is not very familiar with the Ling Six sounds and has no idea how to perform the listening checks in the morning. I have read about the Lings online and through the John Tracy course, but it is hard to put a theory into practice when you've never seen it done. The summer course really cements the correspondence course ideas- we saw how the Ling sounds are used with a hand cue, and saw ways to help Nolan learn to respond to them. His teacher (the fabulous Miss B., who is absolutely amazing) uses little Crayola stampers as an incentive for certain tasks. To help Nolan with the Ling sounds, she had Dennis and I model the task. When we gave the sound in response, we got a heart stamp. Nolan is painfully shy in class, so he was reluctant to give any response. He finally gave an "Ah" in response, and received a stamp for that. Hopefully tomorrow we'll get a bit more.

Nolan is quite shy in large groups. I'm not quite sure how to handle this- I hate to see him hunch over and not want to participate in the circle time activities, etc. He does put his picture on his dolphin in the morning, but crawls to the bulletin board and then hides his face. I wonder if he just doesn't like being the center of attention. One problem I'm seeing is that he sometimes will even push other children away when he's in "shy mode." This isn't a good thing, because we want him to socialize freely with others. The good thing is that he's not always in "shy mode," and his clingy behavior is often worse when I'm in the room. I'm glad he is in a classroom without Mommy present, because he can come out of his shell and branch out a little.

The parent portion consisted of lectures on audiology. While much of the information is fairly basic, I still learn something new each day. They do complete audiological testing here, so Nolan will receive some tests he has never had before. One is called a stapedial reflex test- if this is absent, there is typically significant hearing loss (usually >60dB). It will be interesting to see if Nolan has a present reflex, since his loss is 60-65dB rising to 40dB. The audiologist thought that the reflex would probably not be present with this level of loss (it is present in mild losses). We also discussed the differences between ABR's and ASSR testing (rather technical and boring to most, but I really liked this section).

We also had a demonstration of computer-driven speech programs. They showed us why it is not good to use computer generated speech programs, because the programs can positively reinforce incorrect speech patterns. For instance, if you are working on sound presence, a child who says, "AHHH" appropriately is rewarded. Unfortunately, so is the child who has a raspy, breathy, "Ah-hhh-ah-hh." Since practice can make permanent, you don't want to give a big reward for the incorrect sound. A live person is able to listen to the child's speech, and if it is not quite on target, give a better model of how the specific sound should be said. For instance, if the "Y" in Yogurt comes out as an /n/, acoustic highlighting could be used to get a /y/ sound. The therapist or teacher (or parent) could lean in close to the child's microphones and say, "eeeyummy!" to highlight the /y/ sound. I found this useful, since Nolan often uses a sound close to /n/ when he says "Yeah!" We can highlight the /y/ sound to help clear up the confusion.

Formal and informal assessments were discussed at the end of the day. Parents can use informal assessments to ensure their child is still on track- and to know when it is time to up the ante and move to the next level. Things like pragmatics (the use of language in social contexts), word counts using vocabulary lists, and language samples can be monitored informally. Professionals use formal assessments to get unbiased language data, including tests like the PLS-4. We were able to watch a video of one of the children in our session having a language evaluation. The personalized videos they show us really drive some points home! They did stress not testing children with the same test too frequently, as children can memorize parts of the test. This would invalidate results, so if testing is going to be given less than six months after the previous test, a different test should be used. For that reason, Nolan will be tested with a different articulation and expressive/receptive language test than the PLS-4 (the test that was used in May).

I did peek in on Nolan during his speech session today. He was having standardized testing done- I think it might have been a picture vocabulary test (or a receptive language test- not sure). His SLT asked him to point to "buckle," and he did! I was shocked that he knew that word. Another set of parents was also in the observation room, and she noted that it can be easy to underestimate what our little ones know. I agree- I suppose it is time to up the ante for Nolan's vocabulary (next up: words like jubilant and ecstatic)!

Wednesday, July 14, 2010

When the Sun Goes Down on Santa Monica Boulevard

Day Three at John Tracy was wonderful. I missed Dennis, who was with our older son Matthew during the day. Today's lecture was on language opportunities, acoustic highlighting (repeating the child's words, but with the correct pronunciation), and ear anatomy. The "tip of the day" was to get at the child's level, so that you are able to easily converse with little ones.

We had a brunch reception at 10:15am, and I ate some fruit and a few donuts (remember the donuts- they will come into play later). We asked so many questions during the audiology lecture that we ran over the amount of time. Interestingly enough, it was the conductive system that drew a lot of questions. There are a few families here with hearing aids, and obviously a conductive component wreaks havoc on the sensorineural loss. Someone asked if fluid had any effect on children with cochlear implants, and the answer is it does. While the electrode array is NOT in the middle ear, the wire does pass through the area to reach the cochlea. Some people have reported a change in hearing sensation with the presence of fluid, so it is important to monitor middle ear fluid in all children with hearing loss, regardless of device type.

Nolan took another nap today, of his own volition. He was placed into the book area and he looked at books for a while, then took his "ears" out and went to sleep. I went to check on him, and he was snoozing away in his little corner, as content as can be. It is nice to see him jiving so well with the classroom routine, even if he is awake at 9:30pm and keeps coming out to tell me is isn't sleepy, he is scared, and there is a dinosaur in his bed. I checked for rogue stegosauruses and found none, so I'm pretty sure he just doesn't want to go down tonight!

I am trying to find a concise way to describe how John Tracy is different than other preschool experiences I've encountered. The student:teacher ratio is amazing, of course. The teachers made two different books for the children (including their actual pictures) that describe the day's routine and a "friends" book in the format of "Brown Bear, Brown Bear, Who Do You See?" The teachers truly care about each family and child. The children's pictures are everywhere, making every learning experience a personal one. But really, I suppose it comes down to this:

John Tracy Clinic isn't about the kids. It's about the parents.

Along the lines of "If you give a man a fish, you feed him for a day, but if you teach him to fish, you feed him for a lifetime," John Tracy strives to teach the parents how to teach their children.

I'm so used to being in the doctor's office or other professional's office, apologizing for the fact that I'm "just the parent." I have a concern about this or that, but really, I'm "just the parent."

At John Tracy Clinic, you are The Parent. You are important- the most important person in the child's life. You have the power to truly make a large difference in your child's world. The entire aim of the John Tracy Clinic is to give parents the tools they need to make great things happen.

After school, we hopped into Lucas's parent's car and went to Santa Monica with them. Truthfully, this involved squeezing into the back seat of a very small rental car, between two carseats. This is where the donuts come into play- if I had eaten just one less, the fit would have been a bit easier. The entire drive down the 10 freeway was spent cursing that extra donut and the adjustment knob on the side of Nolan's carseat!

We made it to the beach and the boys had a blast. We're always thankful for Nolan's residual hearing in these circumstances, because within a certain distance he can hear what we're saying. Of course, Nolan is quite fearless of the waves and decided that he would like to try and swim to Catalina, so there was a lot of chasing after him when he got out of range. The amount of sand that can be contained in one boy's clothing, diaper, and shoes is impressive. Really, we could recreate the Sahara on the front lawn if we wanted to. I think we'll be borrowing the vacuum tomorrow night!

Lucas and Nolan on the beach.

Nolan has no fear of the water.

After the beach, we headed to Gilbert's El Indio Mexican Food restaurant. There was a bit of a wait and both kids were kind of fried (Nolan started screaming for his JUICE! while waiting). Then there was the little incident of spilled Crystal Light from our backpack, creating a puddle the size of Lake Erie on the restaurant floor. The good news: everything now smells like pomegranate-cherry. The bad news: everything is now wet and tinged pink. The food was absolutely DELICIOUS, so it was worth the wait. After another squeezing-into-the-rental-car contortionist act, I was starting to wish I had started a diet three months ago. But the enchiladas were still worth it.
Everyone agrees, Gilbert's is delicious!

We're back now, and Nolan is having a very hard time going to sleep. It's been a long day, so I'm ready to crash, too. Dennis will be coming for tomorrow's session, and I look forward to having a second set of hands around. I honestly can't believe our first week is more than half over- time flies by quickly when you are so busy and the days are chock full of activities. I haven't missed a TV or phone since coming here- we're simply too busy (and tired) to really worry about any of those distractions. I am quite thankful for the wireless connection, though! I'm not sure what I'd do if I didn't have the opportunity to write and stay connected to everyone!

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!

Monday, July 12, 2010

Drinking From a Fire Hydrant

If you have a child who is deaf or hard-of-hearing and can make it to Los Angeles for three weeks in the summer, then go to John Tracy. This place is absolutely incredible. Everything is tailored to helping children succeed, by teaching the parents how to guide and teach their children.

Day 1 of the John Tracy Clinic was a resounding success. Transitions are marked with song, starting with the "Time for school" song, then the "clean up" song, the circle time song, the welcome song, etc. We placed Nolan's lunch into his cubby, along with his diapers, nap towel, stuffed bear, and change of clothing. We played in the classroom for about 30 minutes, during which time Nolan's speech-language teacher (SLT) Ms. C came to talk with us. Nolan will be pulled out daily for individual speech sessions ("stickers") and we will have consultations with her on a regular basis.

Before the parents were dismissed, we accompanied our children to the playground. They had Duplos, bubbles, easels set up with paint, and sand toys set out for the children. Nolan was painting when I left, and he moved over to the bubbles when Dennis left. Not a single tear was shed, much to our relief!

We moved to the parent classroom, which resembles a small lecture hall in college (complete with tiny pull-out desk attached to the chair). From this point on, a torrent of information was given to us. The Los Angeles police talked to us about safety in the area, and they were extremely helpful and caring. The playground across the street is not a safe place to play (we stick out like sore thumbs and it can be a gang hangout), but if we want to play there as a group, we can call the USC division and they will send uniformed officers to hang out while we play. There is another playground off S. Flower St. that is safe (I heard about this playground from energyofx).

There are two vacuums for the JTC families to share, so two "vacuum monitors" were chosen, and questions about the apartments were answered (one family has broken air conditioning with plastic over the windows, so they're roasting!).

The "Tip of the Day" was given, which was to "Make Your Point." This is pointing to your ear and saying, "I heard that" for various sounds. While Nolan generally responds well for environmental sounds, it was interesting that he did not respond to the drum being struck for circle time until we stopped and said, "I heard that." Then he turned and paid close attention to what was happening in the direction of the sound. He knows that a doorbell means someone is at the door, a microwave beep means food is ready, and now he is learning that the drum means "circle time."

We were given a full three-week schedule with all planned activities. The classes start out with basic information, and conclude with things like "phonological level speech" and "advanced auditory skills." We were given a tour of the facilities, which included the office where the correspondence course reports are received and support letters are mailed. We saw AVT therapy rooms, the school library, audiology booths, and the observation rooms for our childrens' classrooms.

We broke for lunch and Dennis went to pay for the apartment/parking permit/linen fees while I went to spy on observe Nolan in his classroom. They were eating lunch, and the little guy was inhaling his food! The teachers didn't realize there was a sandwich in the lower compartment of the lunch box, but they came to the window to ask if certain parents were in the observation room (one little girl was crying a lot). We said no, but then I mentioned Nolan's sandwich in the bottom compartment. Soon after, he was munching on his PB&J (though I think he was full from the yogurt, blueberries, and pretzel crackers I had packed for him).

After lunch, we met for our support group. We each wrote letters to ourselves expressing our worries, fears, and hopes about our children. These were sealed, and we will receive them back at the end of our three weeks. It will be interesting to see what our feelings are now vs. the end of the program.

The group went around and we gave a brief introduction about our families, including where we are from and when we found out about the hearing loss, type of amplification, and how we heard about JTC. One mom talked about having a progressive loss, and how the same grief of initial diagnosis happens again and again, each time a new loss is discovered. This really hit home with me, since the first real drop in Nolan's hearing (August 2008) was the hardest point for me- far harder than his initial diagnosis.

After the support group, we had a little break. This meant I headed to the observation room, of course! Most of the children were sleeping, but Nolan and little S. were wide awake. Nolan was sitting in the play kitchen area, getting some attention from the classroom assistants. He seemed to be enjoying the individual attention, as he was all smiles as they chatted together!

The final part of the day was going over the four areas the family support counselors would cover (which include sibling relationships, developmental concerns, and two other topics that I forget). Forms for developmental assessment requests were handed out, for parents who would like to have a consultation about specific behaviors or problems. In our case, I will probably turn one in for help with Nolan's screaming and sleep issues. John Tracy focuses on the WHOLE child, not just the set of ears that many professionals care about.

After we were dismissed, I went to check on Nolan again. They were eating snack, and even meal time is a language lesson. Kids were requesting various parts of the trail mix and they were singing a "fish in the sea" song every time a child requested a goldfish cracker. Nolan thought the fish song was hilarious!

He had loosened up a bit by the end of the day, so when the final circle time was called, he started to run around the room like a little monkey. They brought him over to the circle and had him sit down, and he participated in the "goodbye" song. Then the parents were let in through the parent door (this door is only used by parents leaving and entering- the staff use another door so the children don't expect a parent to walk in every time the door opens).

There are six children in the class, and as many as six teachers/assistants/Speech Language Teachers at any point during the day. At the minimum, there are four adults in the classroom (the main teacher, her two assistants, and a volunteer). Nolan's class consists of four boys and two girls, and he is the second-oldest in the class. His non-napping buddy S. is the oldest, and he and Nolan get along really well.

Nolan and I played on the lawn with a few other kids (including the adorable Noah), and then we headed up for some quiet time. Tomorrow will be full of more information than today, and we have a consultation with his audiologist tomorrow morning. We have speech-language consultations scheduled as well, but I can't seem to find the piece of paper with this information (I might have left it in Nolan's classroom).

I am going to give Nolan a bath and then put him to bed, so that he's ready to play and learn tomorrow morning!

Sunday, July 11, 2010

Riding the Alligator

Playing on the lawn by the Annenberg Apartments

By far, Nolan's favorite item at the apartment is the elevator. He keeps telling me he wants to "ride the alligator," and every time we wait for it to come up, he says, "kids in there!" He is so happy when the elevator opens and there is a family inside. Currently, he is eating some grapes and watching Cars on our mini-DVD player. He is so overtired that he had a meltdown earlier tonight. I think he needs some "down time" and an early bedtime tonight.

We went to the John Tracy orientation today. The Clinic is literally next door to our apartment building, and the 78 degree weather makes for a pleasant walk to school. The area is right by USC, so there are a lot of restaurants and stores in the immediate area.

The orientation was held from 2:00pm to 4:00pm. We were there a few minutes early, so we hung out in the courtyard with the magnificent 150 year old tree. I'll have to take a picture of it, because it is amazing. Most of the official "John Tracy" class portraits are taken in front of the tree, so you can see photos of it on their official website or blog.

For the orientation, we were taken into Nolan's room. I'll have to update this post tomorrow, because I am literally so tired I can't remember his teacher's name. Horrible, I know, but I'll be able to remember it tomorrow after I've had more than 4 hours of sleep! The classroom is wonderful: there is a play kitchen area with realistic play food, large foam blocks, a platform area with a small slide, and lots of large Duplo type bricks with train parts. The kids played while we filled out an information sheet. Lucas is in Nolan's class, so they got to meat each other!

Bloggy buddies meet face-to-face

Nolan's most anticipated item was the playground. John Tracy has a nice playground with canopies shading the structures. The slide is metal, so that children with cochlear implants don't have to worry about any static electricity causing damage to their CI programming. Nolan really loved the sand, and spent quite some time creating a little sand pile.

The parents were called inside for a brief meeting, where more information was given. The classroom uses a soundfield system, and it really does elevate the teacher's voice above the background noise. We were given a daily schedule, which is extremely detailed.

Every morning at 9:00am, we arrive in the classroom and the children are welcomed. The parents do a listening check on the child's hearing aids or cochlear implant, and then the children gather for circle time at 9:30am. A "Welcome Song" is sung with each child's name, and then the child will place their picture above their name on the wall. After circle time, the children are ushered outside to play and the parents go to their lectures.

Circle Time with the Fabulous Miss B.

The kids then have snack time after playing, then the class is divided into two groups. While one group is doing their language lesson, the other group is working on an art activity. Then the two groups switch. Lunch is at 12:00, followed by nap and rest time. The kids wake up from 1:45pm-2:00pm, put things away in their cubbies, then go outside to play. 2:15 is snack time, 2:30 is cooperative activity time, and the children are dismissed at 3:00pm. Parent-teacher conferences are held from 3:00-3:20, as needed. Children are also pulled out for daily individual sessions with the speech-language teacher- this time has been dubbed as the time to go for "stickers," as the children are given stickers when they go to work with their speech language teacher.

We were also introduced to Nolan's speech language teacher and the myriad other professionals who help our children learn to listen and speak. Honestly, the student:teacher ratio is so low it might be close to 1:1!

Dennis and I stopped by the local Ralph's to go grocery shopping, since we will need to pack Nolan's lunch each day. We had picked up a lunch box at the Ventura Target, so we just needed good lunch items (lunches must be ready-to-eat with no preparation required). I bought blueberries, strawberries, string cheese, PB&J, pretzels, yogurt, applesauce, and pudding. Nolan should have lots of good lunches this week, all with familiar foods that he likes. His teacher stressed the importance of not trying new foods during their stay here- enough of their lives are turned upside down (new school, new "home," new toys, new people). New food doesn't need to be added to the number of things that are different!

On Nolan's teacher's recommendation, we stopped by La Taquiza for dinner. Oh, my goodness. The food alone makes me want to move back to Southern California! I might have made myself sick eating so much- it was delicious! Once we returned, we took a trip on the "alligator" to check out the lounge on the third floor. There is a nice flat-screened TV and two microwaves in the lounge. We met a really nice Irish family in the lounge, but had to leave when Nolan unceremoniously wet through his clothes! He is now cleaned up and in his pajamas, and will be going to bed very soon.

I think I'll go to bed, too- school starts tomorrow, and it looks like it will be a very busy day!