Music Time

 Miss Kat has been using her CIs to enjoy the world around her. She is so into music and has had the opportunity to do some really awesome things in the last few months.

First, she went with a friend to see Imagine Dragons

Then we went as a family to see the musical "Sweeney Todd: The Demon Barber of Fleet Street"

Over Fall Break, she and I traveled to Las Vegas to a music festival where we had the chance to hear a few dozen awesome artists. It was a fun mother/daughter adventure.

And then last night we watched "Jekyll and Hyde" the musical as well.

I know that her love of music and plays is in no small part due to the blessing of her cochlear implants. Several of her Christmas presents this year are going to be experiences such as these. It is so awesome to have the opportunity to enjoy singing, plays, and yes, even rock concerts, with my deaf child.

The Irony

 In what can only be considered a full circle moment, I would like to announce that our family is headed back to Utah (the place we fled to find appropriate listening and spoken language services for Miss Kat so many years ago)

AND

in January I will start as a remote employee of The John Tracy Clinic!!

We believe that JTC was a linchpin in our journey to get Miss Kat talking. They were also the first place that worked to educate ME as her parent. It was where I began my journey to understand listening and spoken language, and the very first step toward my career as a Teacher of the Deaf.

I will be providing AVT, parent coaching, and parent education.

We could not be happier.

14 years and counting

14 years ago today Miss Kat was in surgeryfor her first cochlear implant. We had no idea how it would change all of our lives. We thought that the CI was a chance for her to regain the ability to turn when we called her name (for convenience of signing and for safety) but instead it opened doors we never could have imagined. So how did it change things? The best explanation is through an average day in our household. So what did we do yesterday? 

1. Miss Kat woke up and did her homework. (She is attending BYUI with minimal accommodations. She has an FM for her professors and gets captions on any videos.) 

2. Miss Kat had to work in the afternoon. She is a cashier at a local store she loves. (She interacts easily with the public. She even had a child with hearing loss come up to her and point out that they both have hearing devices...something we did with teens and adults when she was young. Now she is the example!)

3. Miss Kat had Institute. It is like a Bible study for young adults. (She attends church with the other "young single adults" in the area. Sometimes she brings her FM for services and when they watch movies she asks for captions.) 

4. When Miss Kat got home, we finished listening to a podcast we had started the night before. 

She has been through three sets of processors, each improving her hearing and giving her more freedom. She can now hear when she swims and Bluetooth her phone (and music) directly to her ears. She talks, she sings (badly!), she loves music, true crime, and everything psychology related. I don't know where we could be without her CIs but I know for sure it wouldn't be here.

One Down....More to Go (maybe 7, 9, who knows!)

Miss Kat just finished her last final for her first semester at university! She got strong grades and we are super proud of her. She learned a lot about being an adult and about how to be successful in college. She is heading home for a visit and can't wait to see her.

Time to Reconnect

Some thoughts while visiting Miss Kat at her dorm on my Spring Break. 1. Teen girls can be just as messy as boys. 2. True love is listening to the playlist your child creates without complaint. 3. Kids are still physically growing at 18. I'm pretty sure she has gotten taller in the last three months. 4. Sitting in the hot tub is a great way to bond (Thank goodness for those waterproof devices! This would have been impossible in the past!)

Bye Bye Miss Kat

 

Miss Kat is headed to the dorms!!! While she has been enrolled with BYU-I for Pathways and now this fall semester online, she has made the decision to enroll full-time as a campus student. As of January 3, Miss Kat will be on her own!

She is taking her Roger Select with her and has asked for real-time captioning in her classes. She will have a doorbell with a light (so she doesn't get surprised by maintenance if her implants are off) but other than that she is headed to the dorms just like any other girl her age.

CONGRATS GIRL, YOU HAVE COME A LONG WAY!!

Meeting Friends for a Wedding

 Miss Kat returned from Africa with amazing stories and great friends. The leader she had spent the three weeks with was getting married this weekend and all the girls wanted to attend. They set up a travel plan and are road tripping out to the wedding outside of Phoenix right now!

15 years ago we had no idea where her life was headed. 13 years ago we took a chance on a cochlear implant. That decision changed everything. She hears and speaks. She laughs and chats with friends. She sings songs while joyriding with her girls.

Miss Kat heads to Africa!

 This summer Miss Kat has the amazing opportunity to spend 3 weeks on a humanitarian trip to Ghana. She will be working with a church group to build two new rooms for a school. The only accommodation she needed was an outlet to charge her cochlear implant batteries. English is the official language in Ghana (which helped guide her choice to which project she would participate in). 

If you would like to follow her journey in Africa, check out the trip's Instagram: https://www.instagram.com/hefy.ghanacapecoast/

Miss Kat has grown and changed so much since I began this blog. We were on a very different path before she received her cochlear implants. I really couldn't imagine being where we are today. Miss Kat has become a superstar and her ability to communicate with others is miles beyond what we ever expected!

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

Obsolescence

This is a new one for us! As of today, Advanced Bionics will no longer be selling the Naida Q70 processor that Miss Kat uses. I also received notice that one year from today, they will stop servicing it and call it obsolete. The bad news is that we will need to get a new processor, the good news is that insurance will surely pay for it once it will no longer be serviced. Unfortunately, the current CI processor (Naida Q90), in my estimation, does not have enough differences to be worth the heavy price tag that it would inevitably come with. So, we are here crossing our fingers that AB is about to release some new and game-changing for us!! P.S.- Miss Kat is about three weeks away from having been activated for 11 years. Wow...

Karaoke Night

Guess who was the first volunteer at Karaoke Night at her Young Women's group? Yep, the deaf kid.

DEAF Peers?

We are preparing for Miss Kat to attend a week-long church camp for teens in Utah this summer.  This program has several classes where she will study the scriptures and hear from religious professionals, researchers, and motivational speakers. She will be with hundreds of other LDS youth, in huge classrooms (it is held at BYU) and will be a great learning and spiritual experience.

There are 24 sessions available but one of them boasts of being "ASL Accommodated". I asked Miss Kat if she would like to attend that session. While she would not use the interpreters, she would have other d/Deaf youth in her group. There would be other kids with CIs there and she could have the chance to bond with them and interact with more teens with hearing loss. She said that she would rather not. She said that the pressure of using an interpreter to communicate with them, struggling for them to lipread her or use a few signs and gestures and her attempting to use her CI to understand their non-typical speech just would take away from her experience. She said it is more stressful to be in those situations and that she just relates better and communicates more easily with people with typical hearing.

That is HER opinion and HER choice. At nearly 16 years old, I will continue to offer her these opportunities, but I will default to her comfort and choice.

(Miss Kat will be using her FM and live captioning for the large "lecture hall" type classes and just her CIs for everyday communication.)

High School Days

Miss Kat has been doing really well with this huge transition. She really enjoys her classes and is doing well. She is in Algebra and Biology this year but she loves her electives. She is taking art and "family and consumer sciences" known as FACS (it was what I called Home Ec growing up!)

Miss Kat is also driving now! That has been quite an adventure. She is very cautious and responsible. I am very proud of her.

Miss Kat's favorite part of high school is all the clubs she belongs to! She is in yearbook club, a book club, and an anti-bullying club. She also is performing in a community theatre production of "The Fellowship of the Ring" for the next two weeks. She also attended the Homecoming dance last weekend.

What an outstanding, average life she has. When things were dark, and we didn't know what her life would look like, even my highest hopes didn't look like this. She has friends (her annual Halloween blowout is coming up again!) she is comfortable with who she is (a big time nerd) and she is doing well in school. Her only accommodations in school are her FM system, a visit from her TOD a few times a week and a quiet place to take a test. She also receives academic tutoring, once a week, from my LSLS mentor at work because she is completely convinced that I lack the ability to teach her!

Miss Kat is a perfectly imperfect everyday kid who happens to be deaf.

Sharing Music

Miss Kat's favorite thing these days is YouTube. She listens to music on her phone NONSTOP. She loves looking up music and she especially loves lyric videos. Whenever we are driving together she asks if we can share music with each other. She will play me one of her favorite songs and then she looks up one of mine. It is really fun to share like that. It is certainly not something that I ever thought I would be able to do with my profoundly deaf daughter.

I am speaking at the national AG Bell conference this year. I am sharing our family's story so I have been reviewing my blog a lot. It has been amazing to walk back through my thoughts and emotions across the last 13 years. It has been a long journey, with many twists and turns, and we certainly are in a different place than I imagined all those years ago when we began investigating a CI for Miss Kat.

I believed that she would need ASL as her language of communication and instruction her entire life- I was wrong. I believed that all deaf children should sign from the start- I was wrong. I believed that Miss Kat would need specialized instruction for her entire school career- I was wrong. I believed that "oral parents" and "signing parents" had a fundamental difference- I was wrong. I believed that ASL was the only language that was accessible to children with hearing loss- I was wrong. I have learned and changed so much and so has Miss Kat. I am so proud of her and her accomplishments. She is growing up to be an amazing young woman who happens to be deaf.