IEP Booklets

When a parent goes to an IEP meeting, it is good to have all of the proverbial ducks in a row. Know what the necessary goals and accommodations are, and have the data supporting the requested goals/accommodations at hand.

To accomplish this, we made informational booklets about Nolan's particular situation and his needs in an educational setting. The books consisted of:

1. Nolan's name and picture, to personalize the report.
2. Future Planning Statement.
3. History.
   
4. Audiology: all reports from birth to present.
5. FM Systems: letter of support from our audiologist and research on personal FM systems
6. Language testing: Testing from John Tracy and from our home Speech Language Pathologist.
7. IEP References: this included the IEP checklist, deaf student policy guidance, essential aspects of an IEP, and Did You Know?

We made a booklet for each person present at the meeting, so everyone could have their own reference during certain discussions. These were extremely valuable during our IEP meeting- a big thank you goes out to the John Tracy Clinic and to Drew's Mom.

Still Preparing for the IEP

Nolan dearly misses the John Tracy Clinic

Once completed, I will post a complete description of the booklets we are preparing for Nolan's IEP meeting. The information is nearly complete, thanks to help from Drew's blog and from the John Tracy Clinic.

The reason we are providing this information to the IEP team is twofold: one is to educate the team on the needs of children with hearing loss (the needs vary by the child, but Nolan's particular concerns deal with social difficulties, language holes, access to auditory information, and articulation). The other reason is to provide the necessary data to back up our requests for services and accommodations. At our pre-CPSE meeting, we were told that personal FM systems and TOD services are not typically offered until Kindergarten. With Nolan's under-amplification, fluctuant hearing loss, and articulation delay, the FM system is necessary. Every professional (from our own audiologist to the audiologist, TOD, and speech language teacher at John Tracy) has stated that Nolan's access to sound is compromised without the use of a personal FM system. Please note that ear-level FM systems are not universally required among deaf or hard-of-hearing preschoolers (they can even be detrimental to toddlers with cochlear implants, who are unable to report on the functionality of the device). For Nolan's specific hearing situation, however, the personal FM system is vital.

Nolan had his cognitive testing this morning, and did well. He did manage to look like a prodigy on the receptive language portion of the test, pointing to the correct pictures for "horizontal," "parallel," and "equivalent." He doesn't actually know these words (testing officials don't do any evidence gaining- if the child happens to point to the correct picture, they get the point). He's age appropriate (or a little above age level) for his receptive language, but he's not a savant! Still, the test will show that he does not have a cognitive disability and any speech or language gaps are due specifically to his hearing loss.

He did miss the question, "Point to the doll," consistently pointing to the ball. His compromised hearing definitely comes into play, even in a quiet environment. We really need to get his hearing situation figured out and get his amplification set to the correct levels!

We will be running to Office Max tonight to make copies of our little booklets- full of research articles on FM systems, Nolan's history, and audiological/language testing results. Our IEP meeting is at 11:20am tomorrow- wish us luck!

Speaking of preschool, I mentioned the start of the school year to both of our boys. They LOVE school, and the conversation went something like this:

Matthew: "I can't wait to go to Preschool."

Nolan: "You go preschool. Nolan go JOHN TRACY!"

Every conversation ends with Nolan insisting that he is attending John Tracy in a few weeks. I'm not quite sure how to get the concept through to him, though I suspect a few experience books will help him through the transition. He is still in love with his John Tracy teachers and misses his friends dearly.

Appointments Made

Nolan's preschool class at John Tracy

I miss the John Tracy Clinic so much! They have set us on a path to figuring out Nolan's hearing loss, and for this I am forever grateful.

I called our audiology center today and made an appointment for another bone conduction test. We're going to run bone conduction first, and see what we get. Our audiologist said that sometimes there is a conductive component in children (or adults) with no identifiable etiology- in other words, we may not find a reason he has a large air-bone gap. The biggest concern is that his air-bone gap is larger than we've ever seen, indicating normal cochlear function in the low frequencies. This is completely different than any other test we've seen, so we definitely want to see if we can replicate the results. We'll see what happens on August 23rd.

I also called our ENT to make an appointment for Nolan. He has an appointment in October, and they said they could not squeeze him in any sooner than that. They did have one appointment on September 20, at 7:45am. This is definitely not ideal, since Matthew would have to miss school and we would have to leave the house at 5:45am. I told them I couldn't take that appointment- I'll find a new ENT before we have to deal with that situation. When I mentioned that I'd just go talk to his pediatrician or find another ENT because we think he's been misdiagnosed for three years, the office person changed course and said that perhaps the nurse practitioner could squeeze him in sooner. We'll see. If they don't call back tomorrow with an afternoon appointment sometime before the start of fall, then I am seeking another ENT.

Meanwhile, I am preparing Nolan's IEP information, including an entire section on FM Systems. I'm stealing ideas from the material provided at John Tracy, and from Drew's mom- who is definitely a superstar in the world of advocate moms.

Audiograms

Here is Nolan's aided audiogram from John Tracy, transposed onto an audiogram with a speech banana. We sort of wondered where /f/ went- I suppose it disappeared because he can't hear it. The magic box shows that the aids aren't meeting DSL targets, either.

Here is his unaided audiogram, with bone conduction scores. Currently, his right ear is testing better than his left. The shaded yellow area represents the air-bone gap, indicating a conductive component to his loss. The frequencies above 2000Hz do not show an air-bone gap, indicating the loss in that region is purely sensorineural.

Home Flooded Home

We landed in Buffalo last night, happy to be off the planes and close to home. The kids, of course, fell asleep about 5 minutes before we landed, so we had some fun carrying Noodle Boy and Cranky Boy (I'll let you sort out who was who). By the time we got off the plane, all the luggage was stacked up by the Southwest Airlines office. All the luggage, except for Nolan's car seat.

We gathered our suitcases and I sat with the two tired boys while Dennis filled out the necessary missing item paperwork. Fortunately, Southwest Airlines has a loaner program, so they loaned us a car seat until ours could be found. The loaner car seat is slightly smaller than Nolan's car seat, and this was a good thing because the two tired boys had no intention of walking. With three large suitcases, three backpacks/carryons, a booster seat, and a car seat, and a stroller, we needed the boys to walk. There was a brief and intense temper tantrum by Matthew, who wanted to go in a different direction than the parking lot shuttle.

We did manage to get to our car, with all children and luggage intact. Dennis tried unlocking the car with the remote, and nothing happened. For a minute, we had the sickening thought that the battery had died (this happened to us in Cleveland a couple of years ago). Fortunately, it was just the remote that was dead, and we loaded the kids up. We came home to a house that was well tended by our neighbors while we were away.

Sadly, our little flooding situation didn't just disappear, and our family room is quite sodden. We currently have a fan going to help dry things out a bit. Then the computer went on the fritz- we are having difficulty connecting to the internet, and then I get the "blue screen of death" periodically. Rebooting sometimes restores the connection, so if I don't blog for a while, it is because our computer has rebelled and gone on strike.

I have fielded about a thousand phone calls this morning, mostly involving Nolan's IEP. I have scheduled his psychological (IQ) testing for Wednesday morning, and we still have his IEP on schedule for Thursday. I do have to take a trip down to the pupil services office to change the date on his referral form, because otherwise the school can't get the testing and meeting done in the allowed time frame. I still haven't called the ENT or audiologist, though I will probably call the pediatrician soon to take a look at that right ear (still slightly infected, but not as bad as it once was).

We have a lot of ducks to get in a row!

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: 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 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.

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!

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!

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.

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.

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!

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!

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!

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!

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)!