Our daughter Lily Bliss was born in June 2007 with profound hearing loss. At 10 months old, she became one of the youngest in Nebraska to receive bilateral cochlear implants. This blog is the story of our hearing journey and the proof that Life really is Bliss.
Lily's just finished her second week of third grade. It's hard to believe. When she was born the days were so long. Now the days fly by and Lily is growing into a "pre-teen." She's continues to be at the top of her class and gets to sit next to her best friend. Lily loves reading and she pours through books as fast as we can check them out. She is still doing gymnastics and will be starting Girl Scouts and Destination Imagination soon.
Here's Lily's new big IEP goal that covers many topics.
Goal: During discussion of challenging listening or social situations, Lily will use problem solving steps to increase her independence from a baseline of 6 points to 15 points out of 16 point rubric on self-advocacy rubric.
This year, Lily has a new hearing resource teacher who I think will be great. Lots of energy, passion and high expectations for kids with hearing loss. She will check in with Lily for 20 mins a week (3x per month), either in or out of the classroom.
Lily's new third grade teacher seems terrific. She's expressed her openness to learn/collaborate about hearing and said Lily has been helping her remember the FM and captions. She is also pregnant, so hopefully will put all the supports in place with a substitute when she's gone. All great things. Both teachers have indicated things are going well.
Lily continues to wear an FM and her school classrooms all use sound fields. We are also experimenting with a Dynamic, connected to the sound field, inside the classroom and the lunchroom.
Other issues we identified on the IEP that continue to be a focus:
Helping new teachers know how to use equipment
Helping subs use the equipment
Effective small group experiences - use equipment, staying on topic, one person talking at a time, clarification strategies
Strategies in noisy listening environmnets
Giving feedback that equipment is being used correctly and consistently
Social engagement strategies with peers (reading others feedback, greetings, developing best friends)
Understand how her hearing loss may impact her in a variety of social situations
Understands characteristics to make or keep friends
Respects physical space/boundaries of others specifically when trying to hear better.
Another area we have started to focus on is CC or closed captions. When dealing with videos or TV, captions help significantly in understanding the content and have helped Lily to become a super reader. Captions move fast and so your reading practice and speed have to match. They fill in all those words you didn't even know you missed.
This week when Lily's teacher turned on a Kahn Academy video in the classroom, the captions were in Czech. Eventually we figured out how to translate them back into English.
It's all such amazing technology. We just have to stay on top of the various components to make sure they are working seamlessly.
Success for Kids with Hearing Loss - Karen Anderson has a fresh approach and highlights many interesting tools and resources. As Lily gets older, I'm interested in learning more about Interact-AS a school speech-to-text captioning device.
A few months ago, Lily got to live out one of her bucket list dreams of being a flower girl for our friends' wedding. It was a beautiful night with an equally fantastic flower girl dress to match. Lily stayed on her best behavior, walked down the aisle on cue and danced the night away.
The only challenge came when trying to communicate in a big converted warehouse that had been transformed into a wedding reception environment.
Lily occasionally looks to me as her "oral translator" in noise and unless we explain or point out Lily's hearing loss, it often goes unnoticed. However this night, one of the guests asked why I was repeating everything they said...weren't they speaking English? I had Lily explain that she uses CIs to hear and that noise was often challenging. It was a great learning moment.
We recently went for Lily's six-month CI tune up with her audiologist. The two hour appointment goes quickly, however this time we were able to do some speech perception testing and examine what happens to Lily's listening abilities when she uses the FM system.
HINT Sentences in quiet: 97%
HINT Sentences in noise (+5 dB signal-to-noise ratio): 71%
HINT sentence materials are at about a 1st or 2nd grade reading level, so one might compare her performance on this test to listening to material that is routine or familiar. A signal-to-noise ratio of +5 dB is not especially uncommon in a typical classroom and noise levels can often be even higher than this.
AZ Bio Sentences in quiet: 84%
AZ Bio Sentences in noise (+5 dB signal-to-noise ratio): 42%
AZ Bio Sentences in noise (+5 dB signal-to-noise ratio) with FM in use: 91%
AZ Bio sentence materials are at about a 6th grade reading level according to some lectures. It would be appropriate to use Lily’s performance on this as analogous to listening to material that is unfamiliar or that is new information/vocabulary.
We continue to search for better technology to help Lily hear in noise, especially when it is in a multi-talker environment like the lunchroom or during small group discussion.
Over the winter break Lily discovered and announced she wanted to break out her Advanced Bionics Harmony BTEs and wear them at home. We received the Harmonies when Lily was first implanted, but have never activated them, because Lily has always prefered the Body Worns and done extremely well with them.
The Harmonies give Lily hearing in the middle of her ear with the T-mics and enable her to slip the CIs on quickly in the morning. Lily says the only difference between the sound of the BTEs and Neptunes is that she can hear herself chewing and her voice is louder. However, she does not like how they fall off when she is upside down. And she is upside down a lot! :)
Lily also decided to change her standard Neptune headpieces from beige to pink to make sure kids at school saw them. The first day after winter break she said excitedly that everyone asked if she had gotten new CIs for Christmas.
A few months ago, LIly declared that she never wanted BTEs. Perhaps now when AB releases a new processor in 2016???, we'll be the first in line.
My New Year's Resolution is to get back to blogging. It's important!
However, nearly all the blogs I have followed for the past 7 1/2 years are either slowing or have died long ago. I miss knowing these kiddos lives from afar! Certainly Facebook and Instagram have taken their place as a way to share a story. In addition, the kids have gotten older and there becomes less day to day discussion of the hearing journey. But I hadn't realized how important continuing to tell our story would be, until Lily recently found her blog books.
Every few years we've printed out the blog, using Blurb as a book publishing tool. The books have always sat under the coffee table ready to read. However during this winter break, Lily has found and devoured them, reading and re-reading each page as if it was the secret to her life's story. I always wrote with this end in mind, but didn't imagine it would happen when Lily was in the second grade.
Here's to another year of blogging and total bliss (when you meet Princess Elsa for the first time)!
Though this recording, you can listen to Lily's hopes and dreams, in her own words, as she starts her second grade year.
Love that her hopes and dreams include inventing a static proof cochlear implant and to become a cochlear implant designer. Hopefully Advanced Bionics will have a job for her in 20 or so years.
Not sure if that stint is before or after fashion designer and doctor, which she ususally specifies is a Pediatrician and ENT. She has plans to practice both specialties, every other day, when she is not teaching or being a Mom.
My (Lily's) hopes and dreams are….
To open a lemonade stand
To make a new friend
To invent a static proof cochlear implant
To graduate college
To get a good job as a doctor
To make an invention that cleans your room or your house
To get a four in writing
To get a job as a fashion designer
To be a flower girl or a brides maid
To get a lot of Paw awards in one week
To invent a new color
To be in the Guinness Book of World Records
To go in a haunted house
To invent a new Ticonderoga Pencil
To invent a new ride
To make an amusement park
To invent a haunted house
To make a humongous roller coaster in Mindcraft
To make a mansion in Mindcraft
To build a new invention to carry kids around without adults pushing
I share Lily's ongoing IEP goals to help other families in their hearing journeys.
In IEP meetings, parents are always asked, "What do you want your child's goals to be?" Especially in the early years, it's extremely difficult to know what is possible, what can help my child, or what should be without spending hours researching and contacting outside professionals for guidance.
I hope by sharing our story, other families with similar journeys can use these goals as a starting place. Each goal below has a complex matrix to measure progress.
1. Contribute to discussions without dominating, accept topic of others by adding relevant information to the conversation and ask for clarification or for confirmation if not sure of what was said.
2. Given various coping strategies, Lily will have a conversation with her peers on the playground and in the lunchroom. (These are noisy difficult listening environments)
3. Improve her ability to advocate for herself by increasing her vocabulary and understanding of the functions of the parts of her CI and FM, her responsibility for monitoring her CI and FM system and by communicating her needs with her teachers.
Lily had a number of new sport experiences this summer including softball and horseback riding.
In softball, Lily liked hitting the best and was very good at it, but thought fielding was a bit boring. She likes action. It was fun to see her progression through the summer. Fortunately her primary coach was the husband of her first-grade teacher, so I'm sure he'd already received lots of lessons in hearing. :)
We watched carefully how hearing impacted the game. Certainly Lily had to watch and listen to the coaches more carefully, and I'm not sure if she could always tell where the ball was hit or caught based on the sound of the bat or ball hitting the gloves. Such small sounds in such large spaces. We didn't use the FM for softball, but if this was the pros, we'd definitely consider it.
Horseback riding was a a wonderful experience as well. Lily was ready to be "unleashed" on day two, although the teachers had other ideas. The riding was slow and gentle, with lots of confidence building time. While the farm was fairly quiet, it was challenging for me to educate the young teachers on the fly.
On the last day, one of the Moms of the other students came over to me and said I see Lily has Cochlear Implants. Instantly I wondered what her connection with the "hearing" world was. She pulled her hair back and said, "I have one too. I was implanted after college and have had it about 15 years." While I was amazed, Lily thought it was only mildly interesting. Having CIs doesn't seem that unusual to her.
Lily commonly reads upside down. She and the book are totally flipped over while her legs wave around in in the air. Not sure what it means or if there is any research around something like brain stimulation when reading. Maybe this could be Aunt Kelly's new reading research focus???
Lily continues to devour books and grow in her literacy skills. We check out bags of books, instead of just a few, because they don't last very long.
With all this time spent upside down and flipping around, Lily is now enrolled in gymnastics. We briefed her teachers on tips for communicating, but parents sit behind a glass window in one corner of the gym, so I'm not sure how much she is actually hearing or missing. The gym is a very challenging listening environment. However, even with the difficulties hearing, Lily is loving the experience.
Her Neptunes make a little bump under her leotard, but don't seem to give her much inconvenience. The headpieces stay on well in their ponytail setup, even when she's spinning around and around and around. No limitations for this kid!
Second grade seems to be going well. We had a "pre-meeting" the day before school started with all the second grade teachers and new staff at the school. This was in addition to the regular IEP team transition meeting which also had new faces like a new SLP and Assistant Principal. It reminded me of the critical need of training and re-training teachers to maximize the educational experience for our kids.
The new SLP, who was just out of graduate school, told me that she's already met Lily. Then she adds that as a student she attended our local parent group meeting Amplify, where we have SLP students "babysit" and she was able to meet kids with CIs. Feels like a small success that this may have been her exposure to kids with CIs.
Of course Frozen had to be the theme at both her kid and family party. During the kid party, which was held at a local theater, Lily was able to live her dream of performing as Princess Elsa in a reinactment of "Let it Go." It was quite a show!
We're blessed to be surrounded by so many family and friends.
Lily and her "hearing enabled" colleagues are on the forefront of a generation of kids who are able to maximize technology to hear.
Because of this, we believe it's important to participate in hearing research whenever possible. We do it both to benefit Lily's future and the families that will walk in our path. Over Lily's lifetime we've done a half-dozen studies on language learning and listening.
This summer, Lily will add two more to her research resume. One study earlier this summer involved a research van coming to our home. Lily completed numerous listening and language tasks, in the van, to help the University of Iowa understand how kids with hearing loss are learning language, compared to their typically hearing peers.
The next study will be at Boystown in a few weeks which involves telelearning or telemedicine. Boystown is studying if providing audiology services for children on-line is as effective as in person mapping. Here's an Interesting article describing Boystown's future hearing research focus.
We entered Phonak's recent #HearIam contest with cute photos of Lily and her Phonak Inspiro FM system. The prize is a new Phonak Roger Pen, which is a microphone cleverly disguised as a writing pen. Very cool!
Interesting new magazine called Hearing Our Way for children and teens with hearing loss. Subscribe on the website to get a free subscription mailed to you today.
Hearing Our Way is an educational magazine for children and teens with hearing loss designed with language, listening, self-advocacy, and cognitive skills in mind. Independent readers will enjoy the magazine on their own, though students of all ages and reading levels can benefit from using the magazine as a classroom reader guided by a teacher or parent. Articles and features are great discussion starters, and content can be easily implemented into current curriculum, IEP goals, and Common Core standards.
I just finished co-coaching a Destination Imagination group for Lily's school. Our club contained nine first through third graders and we met each week to focus on Science, Technology, Engineering, Math and Art themes.
Because this was the first year of the parent-led program, there was lot of experiementing and educating the adults, but overall it was a tremendous experience. We explored issues of water, verhicles and transportation, communities, insects and spiders, space and animals.
We discovered that these kids had limitless energy, imagination and creativity. Hopefully Destination Imagination is one tool that can help to nuture and encourage this type of thinking for many years to come.
The following are comments made on a sheet of paper brought home today called "One thing I like about Lily Bliss is..." Certain there were many examples provided for her entire class by her lovely first grade teacher, but it still may give us a little glimpse into the life of Lily.
Lily is funny, you are my friend, you are very kind, you are always listening (my favorite), you have very good hand writing, you are good at playing nicely, you are a good friend, you are very nice, you are very nice and funny, you are the smartest girl on the earth and you are so nice, funny and really smart, I like you, she helps me stay quite in the halls, you are helpful and kind, you are funny, you are nice, you are funny, you are funny, and you are nice.
Teacher added: funny, good friend, super speller, and learner.