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.
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.
We took a pretty awesome trip to Hawaii in March, to celebrate my parents' 50th wedding anniversary. I'm not sure why it took us so many years to get to Hawaii, of all the places we've traveled to in the world, but the experience was very memorable for all of us. Bodie asks daily if we can go back to the pirate ship pool, while Lily often recreates the luau in her grass skirt.
Exposure to a new culture and a variety of new words like Mahalo, Ohanu, Aloha and whale breaching were amazing, as were the beautiful sunsets and time with family. Not sure what we would have done without Lily's waterproof Neptune processors. We were in the pool, ocean or the rain everyday.
We're currently searching for a yellow hardy hibiscus, Hawaii's state flower, and now understand the theme of Trader Joe's much better. Need to find an excuse to get back to the other islands, or maybe just revisit Maui and Honolulu.
We took hundreds of pictures and are currently working to get the photos down to a manageable number. Just posting a few here to capture the Aloha spirit, to thank my parents for a wonderful trip and to preserve an amazing experience.
It's been a huge week. After two years of requests, Lily and the other kids with cochlear implants at her school, can now go down one metal slide without fear of damaging their electronic hearing equipment from electrostatic discharge. It's a dream come true. The slide is very fast and very popular with all the kids. Lily says the slide is a "madhouse." Building new vocabulary is just another advantage.
We celebrated the slide's accessibility, our donors and supporters with a ribbon breaking, speeches and cookies. The school's leadership has been so supportive. Many of the families were there to watch with amazement when the kids' hair didn't stand on end as they sailed down the slide. Having a metal slide makes it a little easier to breathe knowing our kids have one less barrier and risk to hearing.
I was proud to work with the other CI families to help to begin to make our school's playground accessible for all kids. This journey has moved the school's PTO to invest in "inclusive" playground equipment going forward. In fact, another new piece of equipment is going in this week. I was thrilled to hear that other parents thought that all kids, no matter the ability or disability, should be able to access the playground and not just be able to get on the rubber surrounding the playground.
While the two-year-old equipment was ADA accessible, it wasn't inclusive. With kids of varying abilities served in mainstream classrooms, it seems playgrounds are an area that needs to be given another look.
As a big TEDx fan, I found this talk by Dale Sindell of TEDXCibeles in Madrid fascinating. (TEDx speakers page)
Dale started losing her hearing at age 19. After graduating from college, she moved back to Spain, got married and soon lost the rest of her hearing. Somehow she continued to work in a variety of career roles and then had children, which resulted in her youngest child being diagnosed with hearing loss.
At that point Dale founded t-oigo.com, a non-profit virtual community which provides information in Spanish for people with hearing loss. Today 30,000 users follow her site each month. She's also an advocate for bilingual education - Spanish and English for kids with hearing loss. Such an inspiration.
LIly's second elementary science fair experience was a success. She studied Social Contagion, the idea that if we observe people who are tired, sad or bored, we become tired and start yawning. The same is true when we study people who are happy and laughing. We feel happy and start smiling with those we observe.
Of course it didn't take much encouragement for Lily to develop a video of herself acting out both roles.
Next year we hope to complete a cochlear implant or acoustics study, but this year we didn't find the right approach for a first grader. Backwards engineering or reprogramming her CI seemed a little daunting. Last year's project measured the noise in her school (there's a lot of it!!).
Let us know if you have any great ideas for a science fair project we could attempt.
Children with bilateral CIs achieved significantly better vocabulary outcomes, and 8-year-old children with bilateral CIs had significantly better language outcomes than did children with unilateral CIs....The outcomes were also significantly predicted by a number of factors related to parenting, child characteristics, and family background.
When Lily was implanted six years ago, the big debate was one or two implants. Our sense was that she had two ears, so she should have two implants right away. There was very little research about the benefits of two implants at the time. Many families were debating about "saving one ear for future technology." I don't hear that phrase today. Two implants seem like a standard practice.