Miss Kat turns 18!!

Hearing Marvelously!

Shortly after my post about the trouble we were having with AB, our local rep contacted me. She said that they had heard about all the trouble we had with Miss Kat's upgrade and that she wanted to work with us to make sure we got what she needed and we were satisfied. She became our direct contact and the process became so much better! She kept us informed, got the paperwork sorted out, and after just a few weeks MISS KAT GOT HER PROCESSORS!

Here is a short video of what it looked like when she was activated.

She is hearing very well. Her batteries last sooooo much longer than her Naidas! We went with the biggest rechargeable because the FM connection is already inside the processor. Miss Kat used to use the middle size with her Naidas because she needed the FM boot for her Roger, but she would have to change the battery in the evening. Even though the battery is larger, Miss Kat says that it fits on her ear much better and she finally feels comfortable wearing her CIs, glasses, and a mask.

So far our only complaints are that the processors have to be assigned to a specific ear (we miss the flexibility of the Naidas on that point) and the fact that the charger only has 3 slots (bilateral users would much rather have four!)

We plan to go tubing next week so we will find out how well the waterproof battery works soon enough. Miss Kat has not been a fan in the past because she feels like everything is too quiet. She uses the T-mic at 100% so the change to a headpiece mic makes her crazy. She needs to get used to it though because we have a big vacation coming up!

A Working Woman

Miss Kat applied for her first job today!

She did great in the interview. The manager liked her a lot and that she had a great personality and was just what they were looking for! She remarked how outgoing and friendly Miss Kat is as well.

I'm so proud of the lovely lady she is turning out to be. She is an independent, gutsy, and all-around AWESOME young woman who just happens to be deaf.

Marvelous Advanced Bionics?

 There have been very few occasions where I have felt let down or disappointed in AB and this last month has been the worst! We are married to AB because Miss Kat has bilateral 90K internal devices. While her outside processors have changed, her internals are here to stay! She has had each of them for more than 10 years (which means they are out of warranty but they are working beautifully) and we hope they will be with us for many, many more!

So, this brings us to the latest fiasco. Miss Kat's Q70s are obsolete. We had warning and knew this was going to happen, so we have been preparing for the purchase of the next generation. The new processors looked great and were to be released at the end of last year (right when we could no longer get service for her Q70s). Hubby and I prepared by maxing out of FSA to cover our portion and tried to talk with AB about what we could do. Well, due to forces beyond AB's control, the Marvel was delayed. It sucked but Miss Kat's current processors were working ok, so we dealt with it. 

Just before Christmas AB called and asked if we wanted to get the process started so that Miss Kat's Marvel's could get ordered. We said absolutely and went over the insurance information and why she needed the upgrade. Fast forward a month...then two months...and we have heard nothing. Finally, I start calling at least once a week. They connect me to "our specialist" who continues to say we are waiting on insurance. Well, then I receive paperwork from our insurance saying we are approved! Miss Kat is (ok, I am!) so excited. I call back "our specialist" and leave a message- no one calls back. I call two days later and ask for "our specialist" again. They say she isn't in but will call us back in the morning. No call back. I call the next Monday and she isn't there AGAIN! I ask if I can just fax over our insurance approval so we can get started, they say fine and that "our specialist" will receive it and call us back in the morning. 

NOPE

Several days pass and now I'm pretty mad. At this point, we are more than halfway through the insurance approval period and if we don't get these processors ordered, it can be canceled. Finally, I call AB and refuse to let them send me to "our specialists" voicemail. I say that I want to order today. They allow it. We order and they say that they need to check what our remaining out-of-pocket portion will be. They SWEAR they will call back the next day and have the bill. 

NOPE AGAIN

Several more days pass and I call AB. We pay our $7500 portion and are told that "they aren't shipping out purple yet" but that Miss Kat is right at the top of the list. I ask how long until it ships...they have no idea. I ask for a receipt so we can be reimbursed through our FSA for the out-of-pocket. Yeah, they can't do that until it ships....

So, we are waiting with no clue how long until her processor ships out. We can't make an audiology appointment (even though it takes at least a month to get in) because we have no idea when we might get her processors. In the meantime, I have seen and talked with many recipients who have chosen purple Marvels and they are absolutely shipping. 

Customer service is important. I don't like the way that AB changes its attitude towards recipients once they are locked in. Before Miss Kat was implanted they were amazing. They answered all our questions, spent so much time explaining. Heck, even when her internal device was recalled and we were facing reimplantation as a possibility, they were AWESOME (she never needed reimplanted despite being on the recall list). They wanted our business when it was a fight against the other two companies! Now that we are stuck, they don't seem to feel the need to support and treat their customers the same way. And I have read and talked to many recipients who are feeling the same way.

Shame on you Advanced Bionics!

Advanced Bionics Marvel!

12 years since Activation

 Here we sit on a typical Saturday morning. 

Miss Kat was up late last night finishing her homework for the week. She had an essay due and she had put it off until the last minute, but she finished and turned it in. She is in a college transition program this year and will be attending BYU-I online full-time starting next September. She intends to major in computer animation.

She is spending the evening tonight going out with a boy she is seeing. He is 19 (she is 17 1/2). This is their third official date (but they also hang-out at their bible study group). 

Our lives dramatically changed 12 years ago. The world was turned upside down. We moved across the country. I began a new career. Miss Kat shifted communication modes and learned to listen, talk, read, and is now so very typical. Here are three very average examples:

1. Miss Kat spends around an hour a day in her room dancing. She makes up choreography to her favorite songs and jams out!
2. Last week she was having some pain but it had passed and she told me she was feeling better. She said, "My 'groinal' area is doing much better". GROINAL?! It takes a native fluency in a language to understand how we would change one category of word into another with a small change like that :) That is true mastery of English.
3. Today when talking about retention of her CIs on rollercoasters for her date she said, "I always forget that I am deaf, but when I have to wear (item she didn't want) everything gets messed up with my implants and I have to think about it all day".

That's the changes in the last 12 years. We have gone from absolutely having to attend a Deaf school for access to education to being 100% mainstreamed with no supports. From having to drive all over town to visit the few Deaf friends she had, to attending anime conventions with her besties from the neighborhood and church. She went from understanding ASL only to not even struggling to listen when people are wearing masks!

I would have NEVER believed we would have gotten here. I thought it was impossible. I could have never foreseen the difference this technology could make in a child's life, but here we are. Here is our very typical Saturday morning.

For Children with Hearing Loss, Not Any Teacher Will Do

I am a certified teacher. I am licensed to teach general education, special education and students with hearing loss. But, of course, I consider myself a Teacher of the Deaf (TOD) exclusively. General education and special education teachers do amazing things! In fact, I don't think I could ever do either one of those jobs! I could never handle some of the varieties of special needs that SPED educates every day, and I know for a fact that I could never teach a classroom of 25 or more students (and don't get me started on the up to hundreds that might pass through a high school classroom in a day...). That being said, I do not believe that just any teacher can educate a child with hearing loss.

The Individuals with Disabilities Education Act (IDEA) open the door to education for children with disabilities. It codified that ALL students, regardless of disability, had a legal right to a "free and appropriate public education" (FAPE) in the "least restrictive environment" (LRE) and that their needs would be met through an "individualized education program" (IEP). This means that students with hearing loss* have the right to be educated and have their needs met through the umbrella of special education. But it also has had some unintended consequences for students with hearing loss that complicate the issues.

The first issue is that of LRE. The law defines "least restrictive" as "to the maximum extent appropriate, children with disabilities including children in public or private institutions or care facilities, are educated with children who are non-disabled." The regulations further state that "special classes, separate schooling or other removals of children with disabilities from regular educational environment occurs only if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily." 

That means that the default placement for children with hearing loss is in a mainstream classroom. That is fine and dandy if you have a student who has excellent access to sound, typical development in all areas (including receptive and expressive language, vocabulary, auditory memory and executive functioning) and no concerns about self-advocacy or social skills. But let's be honest, that is a very small percentage of students we serve!

There is quite a bit of research indicating that when taught by a skilled TOD, students with hearing loss can learn as much as hearing students in the same classroom. Unfortunately, this is not happening and the outcomes are reflective of that. The data also indicates that deaf and hard of hearing students make between .2 and .6 year’s growth per school year, thus falling further behind each year. This isn't because SPED or general education teachers are malicious or even bad at their jobs. It is simply because they are not TODs.

I spent six years (four in undergrad and two more in graduate school) to even begin to teach. Every practicum and student teaching placement I had was with students with hearing loss. I worked with a variety of ages, in a variety of settings, but they were all deaf or hard of hearing. The average SPED teacher *may* have seen a student with hearing loss and generally have one course that covers discusses many types of disabilities and how development is impacted, but a general education teacher has even less exposure to low incident disabilities like hearing loss.

After my formal education, I spent three additional years being mentored, seeking out continuing education and observing master teachers. This improved my practice dramatically and allowed me to become a Listening and Spoken Language Specialist, Certified Auditory-Verbal Educator. This is considered the "gold standard" for a TOD who works with students who use listening and spoken language. (I hope that there is also such a designation and process for teacher who use ASL or another mode of communication, but I cannot speak to that.) A general education or SPED teacher does not have the knowledge, resources, strategies or experience that I and other TODs have, and that is why they are less likely to be prepared to work with them.

So, what do we do?

Well, in an ideal world, ALL deaf and hard of hearing children birth to age three would have their primary interventionist be a TOD. This would ensure that their speech, language and literacy skills would be developed under the watchful eye of the most qualified professionals. When moving to preschool and school aged services, every child with hearing loss should have access to a skilled TOD. That can look very different based on the appropriate educational setting (whether that be in a self-contained classroom, a mainstream setting with an itinerant or even via distance technology like Miss Kat does) but having someone who understands the development of language, listening and literacy for this specific population can make all the difference.

*There are some reasons that a student with hearing loss could not qualify for special education services because there must be both a qualifying disability (the hearing loss) AND a demonstrated need for specialized instruction. The disability must "impact the students access to the general education curriculum".

Marc Marschark, Thomastine Sarchet, Patricia Sapere, Carol Convertino. Cochlear Implants and Classroom Learning among Deaf College Students. Biomed J Sci & Tech Res 18(5)-2019. BJSTR. MS.ID.003215. 

Knoors, Harry & Marschark, Marc. (2014). Teaching Deaf Learners: Psychological and Developmental Foundations. 10.1093/acprof:oso/9780199792023.001.0001. 

 Stinson, M. S., Elliot, L. B., Kelly, R. R., & Liu, Y. (2009). Deaf and Hard-of-Hearing Students’ Memory of Lectures with Speech-to-Text and Interpreting/Note Taking Services. The Journal of Special Education, 43(1), 52–64. https://doi.org/10.1177/0022466907313453

Fiona E. Kyle, Margaret Harris, Longitudinal Patterns of Emerging Literacy in Beginning Deaf and Hearing Readers, The Journal of Deaf Studies and Deaf Education, Volume 16, Issue 3, Summer 2011, Pages 289–304, https://doi.org/10.1093/deafed/enq069

Margaret Harris, John R. Beech, Implicit Phonological Awareness and Early Reading Development in Prelingually Deaf Children, The Journal of Deaf Studies and Deaf Education, Volume 3, Issue 3, Summer 1998, Pages 205–216, https://doi.org/10.1093/oxfordjournals.deafed.a014351