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.

IEP Part 2: Future Planning Statement

A future planning statement will be included in Nolan's IEP booklet, to share our vision of Nolan's successful future:

We see the first five years of Nolan’s life as a critical window where he needs intensive intervention to establish his communication and listening skills that he will need in all future educational and life experiences.

In the short term, we see Nolan attending First Covenant Preschool in Jamestown, New York. This is a mainstream program, designed for three year old children. As Nolan will be attending a mainstream preschool, a personal FM System is vital to allow him equal access to the curriculum. Weekly sessions by a licensed Speech Language Pathologist are required to maintain Nolan's current language levels, and to address his difficulties with articulation. Regular monitoring by a certified Teacher of the Deaf (TOD) are necessary to verify that Nolan is functioning socially in the classroom, in addition to monitoring language, equipment (FM System) usage, and Nolan’s ability to hear and communicate in a mainstream classroom setting. The goal for these preschool years is to establish an appropriate foundation of communication, language, listening and literacy that will hopefully allow him to integrate into a mainstream Kindergarten class in Southwestern School District with minimal or no speech and language delays.

If Nolan receives the appropriate accommodations and services, we see Nolan graduating from High School and attending college or post-secondary education, should he choose to do so. We see Nolan as a positive, contributing member of society, who will be successful in life, without letting his deafness define him.

IEP Booklet, Part I: History

I am putting together a packet of information for those on Nolan's IEP team. The first section will be his history, and this is what I've written (yes, I plagiarized Drew's Mom's report, changing it where necessary):

Nolan was born with mild/moderate hearing loss in both ears. Nolan’s hearing loss is now moderate/moderately severe with a history of fluctuation and progression. Recent tests have demonstrated an air-bone gap, indicative of a conductive component to his loss. As tympanometry, patent pressure-equalization tubes (PE tubes), and normal CT scan indicate no cause for a conductive low-frequency hearing loss, the loss is permanent. In addition to the conductive low-frequency hearing loss, a sensorineural mild/moderate high frequency hearing loss is present. Hearing loss characteristics are currently under investigation due to conflicting bone conduction test results from two audiological testing centers. His air conduction thresholds remain in the moderate/moderately severe category.

Nolan obtained bilateral hearing aids in January 2008 at 4 months old. With amplification, Nolan is demonstrating a moderate loss in the low frequencies, normal hearing levels in the mid frequencies, and a mild/moderate loss in the high frequencies. While Nolan responds to speech sounds when amplified, he is not obtaining all of the sounds of speech with his hearing aids at the current levels. His current aided speech awareness thresholds are 30dB, which is consistent with a mild hearing loss.

Nolan started speech therapy through the Early Intervention system at the age of five months. Through intensive rehabilitation and therapy, Nolan has learned how to discriminate the sounds of speech with the use of his hearing aids. Nolan is meeting listening and language milestones for his overall language and communication progress. Unfortunately, due to fluctuating hearing loss characteristics and underamplification, Nolan is testing one chronological year behind his hearing peers with regard to articulation (Goldman-Fristoe: See testing reports).

Nolan has also suffered from chronic otitis media with effusion, which adds to his permanent, pre-existing hearing loss. Thresholds as high as 80dB have been observed in the presence of fluid. Nolan has had three sets of PE tubes placed, in addition to a tonsillectomy and adenoidectomy in an effort to eliminate the effects of chronic ear infection. He has had two ear infections since the placement of his third set of PE tubes in April 2010.

Nolan also has a significant medical history consisting of the discovery of posterior urethral valves, which were ablated at 18 months of age. Severe gastro-esophageal reflux disease (GERD) with mild delayed gastric emptying was discovered when Nolan was two years old, in conjunction with failure-to-thrive. He was placed on a special diet and started taking Nexium (Esomeprazole), which has allowed him to gain sufficient weight to place on the growth charts. In January 2010, a sleep study was performed and found the presence of severe obstructive and central sleep apnea. A tonsillectomy was performed to help eliminate any potential cause for the obstructive apnea. The central sleep apnea is neurological in origin and is still under investigation. A second sleep study will be performed in August 2010 to determine if the central sleep apnea is still present.

Potential Problems

1) Equipment Maintenance

Equipment problems can crop up at any time, and will significantly impact Nolan’s ability to hear. Dead batteries, dirty microphone covers, moisture, earwax in the earmold, and intrinsic mechanical failure of the devices will prevent the hearing aids from functioning appropriately. Some potential areas that could affect microphone clarity include dirt, sand and moisture. Also, if anything is placed over Nolan’s ears, such as a hat or hood, ability to hear is compromised.

2) Ear Infections

Ear infections have a deleterious effect on Nolan’s hearing levels. His permanent loss is currently moderate/moderately severe, and will increase to a severe level of approximately 80dB when fluid or infection is present. Nolan has a history of chronic ear infections that are partially alleviated by the presence of patent PE tubes.

3) Moisture

The hearing aids (“ears”, as they are referred to by Nolan and his family) are not allowed to get wet, so he can not wear them when swimming or bathing. Nolan cannot replace his hearing aids without help, and assistance is needed when he is entering a wet or moist environment. He is also now able to sometimes let his parents know when his hearing aids are not working.

4) Hearing In Noise and Sound Localization

Noisy situations, including classrooms, restaurants and the outdoors, can be difficult for Nolan, as sound localization and quality are affected.

Educational Implications
His parents judge Nolan in need of continued auditory training/listening therapy, in order to develop his communication skills and ultimately literacy skills. They would like a teacher, specifically one for the deaf, who would reinforce what he learns in an auditory training program, which will fine tune his ability to listen within his environment and will benefit him significantly when he moves to the mainstream.

As Nolan’s hearing changes over time, his parents check his hearing daily using the ling six sounds. Nolan’s teacher will also be expected to review Nolan’s ling sounds each morning as he arrives at school. Lings are six sounds (/ah/, /oo/, /e/, /sh/, /s/, and /m/) that predict well his ability to hear all other English phonemes. This check needs to be conducted in a variety of conditions, such as with noise, at a distance of 6, 9 or 12 feet and when the speaker is using a listening hoop. Currently, Nolan is able to correctly repeat the Ling sounds at a distance of 3-5 feet. An equipment check is required at the beginning of each day to make sure his hearing aids and FM System are on and working.

Other concerns include, but are not limited to, literacy, socialization, articulation, consonant deletion, consonant production through listening only (using a listening hoop where the speakers mouth is concealed) and grammar.

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!