New report released by the Laurent Clerc National Deaf Education Center at Gallaudet University to describe the barriers that children with hearing loss aged birth to 21 face in the classroom and with school administration.
New study out of Penn State showing long-term positive outcomes of cochlear implantation.
The research shows that on average, children improve in oral communication skills and have better peer relationships years after implantation, rather than immediately after. Even implant recipients who performed poorly several years after the procedure continue to improve....What helps deaf adolescents cope in middle school? The findings of their study suggest that deaf children should be supported in their early development to build healthy levels of self-esteem and confidence. The degree to which implanted children are accepted by mainstream schools – whether they are understood by their teachers and peers – can also help improve their peer relationships.
Supporting Success for Children with Hearing Loss is a great new resource filled with information about the learning and social issues of children with hearing loss and what you can do to better support the future success of these children. Resources are at no cost, designed to be easy to understand quickly, and practical to use.
Thankful for more coverage of our Hear to Learn celebration - Moms give thanks — loud and clear — to supporters of amplifier project in the Lincoln Journal Star
Lily's Mom is amazing (regular readers already knows this). As usual she continues to make an impact for Lily and others. Today she got some much deserved national coverage for her Hear To Learn project to bring amplification to elementary schools here in Nebraska. Check out the Huffington Post blog post and the video (Lily makes a cameo as well).
So proud of the work she does day in and day out.
Interesting study on Hearing preservation for Cochlear Implant outcomes.
A new imaging device was launched on campus today, helping researchers in the ARC Centre of Excellence in Cognition and its Disorders (CCD) and HEARing Cooperative Research Centre (CRC) better understand how the human brain processes information from a cochlear implant.
For the first time, scientists can use a well-established brain imaging technique called MEG, or magnetoencephalography, to measure brain function in recipients of cochlear implants, including young children. The new device overcomes the electromagnetic restrictions of cochlear implants, enabling researchers to gain valuable insight into this established and effective solution for people with hearing loss.
I haven't posted forever, but think I'm coming up for air now. I ran across this post on a blog which I've followed for a number of years and thought it perfectly captured how I'm feeling now. We met this family at AGBell last year. Just substitute Lily's name and I could have written it myself. However this Mom has boy triplets who are seven-years-old (one of which has CIs and one with hearing aids) and one three-year-old girl with her own set of challenges. The family is amazing. When does she have time to blog?
Her blog post is titled "A Reason, A purpose?" And I think it captures a big part of Lily and my purpose, at least right now. We've connected and mentored and been mentored by so many families around the world and in our hometown, many of who have become very close friends. And many who have gone on to mentor others. Which is amazingly cool. Families almost always thank us for giving them "hope" which is so desperately needed, especially in the early days.
It seems everywhere I go, we are introduced to people with hearing loss or people with children with hearing loss. It may be fate or our network crossing, but it truly is some of the most satisfying work I do.
Lily inspires them all. She too, like Cormac in the blog post, has a love of life and the ability to inspire others. She also has a great skill at listening and spoken language, something we've focused hard on since she was two months old. It's paid off.
She received all 4s, the highest grade in Language Arts, which is dreamy. Her reading test, after the first quarter of the first grade, placed her at the end of the third grade. She could read beyond this, but began to lose some comprehension. She also received 4s in "Confidence in Self" and "Singing," among others, which is pretty awesome. These are both areas which we have worried about for years.
But I also see Lily's 22-month-old brother listening with ease, picking up words out of songs on the radio and speaking in four-plus word sentences already. He probably knows more than 500 words. At the the same point in Lily's life, she was not yet putting two words together, but she knew 200 words or so and we documented each one. That early childhood hearing matters. Lily's certainly caught up, but we certainly can't let up.
Lily struggles hearing especially when it's noisy or kids have soft voices. I watch how much she misses when I volunteer in the classroom or when Lily is outside the school. It's tough.
One Mom told us she used to tell her daughter with CIs, who is now in high school, just to run after the girls when they run, even though her daughter had no idea what game they were playing or why they were running because she couldn't always hear the conversations. The Mom said the girls would make it very clear if they didn't want her daughter there. I think that was pretty good advice. :)
After five months of care, Clarabelle and Isabelle have laid their first few eggs. Lily has always suggested that one of her chores would be collecting the eggs, so as promised, she is outside checking their nesting box multiple times a day. We've even made an omlette which was simply delicious. Something about all that love on a plate.
The 2013 Lasker~DeBakey Clinical Medical Research Award honors three scientists who developed the modern cochlear implant, a device that restores hearing to individuals with profound deafness. Through their vision, persistence, and innovation, Graeme M. Clark (Emeritus, University of Melbourne), Ingeborg Hochmair (MED-EL, Innsbruck), and Blake S. Wilson (Duke University) created an apparatus that has transformed the lives of hundreds of thousands of people. Their work has, for the first time, substantially restored a human sense with a medical intervention.
Check out their incredible video interview of cochlear implant pioneers Graeme M. Clark, Ingeborg Hochmair and Blake S. Wilson and an extensive description of the history of the development of the cochlear implant.
It's hard to believe the FDA only gave its inaugural approval to a multichannel cochlear implant in 1985 for treating adults who could hear before they went deaf.
Lily and I have now given two presentations on hearing and cochlear implants at her school. The first was a presentation to her own class. We started by asking if there was anything different about Lily. One child said she had braids in her hair. Then another one said she had strings on her back. Love it. Lily answered all their questions, showed off her Buddy/Melody and American Girl Doll with CIs, and tried to act out each point we made about Dos/Don'ts, FMs and how her CIs worked. The kids were most interested in the FM and radio waves, as well as the stuffed animals.
Then one day after school a third grade teacher, who was instructing her class about sound, asked if we could come talk about Cochlear Implants and hearing. Her class had read a small piece about cochlear implants in their textbook and they were very interested in the subject.
This presentation was a little more complex with descriptions of the ear, why people have different types of hearing, how a CI works and then questions. Every child had their hand in the air and they asked dozens and dozens of terrific questions until the bell rang. They all said that they had tubes or an ear infection at one point, so they could understand when someone was not hearing as well. A very compassionate bunch. Their questions ranged from how does a CI work to what happens if someone can't pay for an implant.
We tried to inspire the students to become scientists, engineers or inventors that helped people. At the end of the presentation, Lily had taken her headpieces off to "demonstrate" so many times, that her batteries died. I'd left my purse in the car, which always has batteries in it, and Lily had left her backpack down the hall, which also has batteries in it.
So....in a small panic...I looked around and saw remote controls in front of me. I began to open them up and in the second remote I found a AAA battery. I took it out, put it in Lily's CIs and crossed my fingers that it had enough power. It worked. The third graders cheered and clapped and thought it was very cool. The teacher said Lily may now have a third grade "fan club." LIly was perplexed by the comment, but soon was thrilled by the idea. Always a language opportunity.
Lily has been begging and pleading with me to get a "facial" ever since she read the sign "now offering facials" at the local nail place. The power of reading (and definitely more trouble for Mom and Dad).
We're not sure about how her spa obsession happened months ago. We certainly don't visit many spas, but Lily has turned one of our bathrooms into her "spa." No one is to move any of the "spa accessories" which include cups, soaps, tooth brushes, lotions, hair brushes, curlers, pillows, hand towels, etc.
Finally after weeks of stalling, I took Lily for a "junior facial" as she named it. I struck a deal with the facial lady and she did a modified facial that her daughters love. I felt a little bit ridiculous taking a six year old for a facial, but I have to say it was fabulous. There was warm steam, massage, lotions, exfoliation, rotating brushes, and soothing music. Again, a language experience. :) Lily did not move for 15 minutes. I kept making sure she was breathing. She loved it!
The lady suggested I play soothing music for Lily to help her fall asleep. We didn't even go there or explain what Lily's CIs were. And we skipped the head massage. When it was my turn, Lily watched very carefully so she could learn how to provide this service in her own spa.
This evening she gave Bodie her "signature facial." Good thing he is an easy going kid.
We made a quick trip to an incredible orchard this weekend to pick apples and peaches. The founders of the orchard had a fabulous property and you can see the years of hard work that went into building such a grand place. Lily was shocked when I told her the family's foundation actually donated funds to our Hear to Learn soundfield project. Coming full circle in Nebraska.
It was a hot day but there were no lack of apples and peaches to be picked. Of course we had to sample the products as we waited for the hayrack ride to pick us up deep in the orchard. Lots of language exposure like Gala apples, Johnathan apples, Golden Delicious, cider, carmel apples, ripe, rotten, peach pit, kettle corn, etc.
Bodie took it all in, while Lily made plans for her next apple picking adventure. What a great day.
New research reinforces what many people had believed—babies hear what their moms say and their brains recognize these words after birth.
The researchers' conclusion was that “The better we know how the fetus’ brain works, the more we’ll know [about] early development of language. If we know better how language develops very early, we may one day be able to develop very early interventions [for babies with abnormal development].”
Whenever I read research like this it reminds me how critical early intervention is for children with hearing loss. Not only did Lily miss the first ten months of hearing after she was born, but likely she missed another six or seven months of sound as a fetus. The implications of that amount of language missed is hard to comprehend.
You'd never know it today, but it's important for us never to forget.
Advanced Bionics has just introduced the Naída CI Q70 (Naída CI) processor, HiFocus™ Mid-Scala electrode, and HiRes™ Optima Sound Processing.
With Naída CI, AB brings performance and wireless connectivity and now cochlear implant recipients have access to the combined technologies of AB & Phonak.
Benefits of new Naida CI:
• 55% improvement in speech understanding in noise when AB ClearVoice™* and Phonak UltraZoom features are used together
• 100% wireless connectivity—streaming from consumer electronics by leading brands, including Apple, Samsung, and Nokia
• All-new Binaural VoiceStream Technology™ designed for improved hearing in noise
• Bimodal streaming—media can be streamed to a compatible Phonak hearing aid and a Naída CI sound processor at the same time!
• 40% smaller than the previous behind-the-ear sound processor—incredibly lightweight for barely noticeable on and off-ear comfort
• First-ever bilateral feature for easy use and peace of mind—each processor can be programmed for both ears so the best ear can still hear if a second processor is misplaced
• Compatibility with AB performance innovations, including ClearVoice, AutoSound™, HiRes Fidelity 120™*, and HiRes Optima Sound Processing
• All-new, discreet T-Mic™ 2 microphone
In addition to the Naida CI Q70 Advanced Bionics has also recently received approval for the HiFocus Mid-Scala Electrode (designed to protect the delicate structures of the cochlea) and for HiRes Optima Sound Processing (which offers optimized battery life)!
We are definitely going to get the HiRes Optima soon for Lily's Neptunes. It's another trip to the audiologist, but well worth such an increase in battery life.
Currently, Lily's batteries will die around 4pm. She is starting extracurricular Spanish class this week that, you guessed it, ends around 4pm. So what should I do? Go to school and change the batteries between school and class? Ask the teacher to do it? Or get this HiRes Optima ASAP.
We'll also be investigating the Naida CI which looks exciting, although we love her Neptunes. Lots of exciting new options to think about.
All of the pieces are well done and an impressive advisory panel guided the toolkit's development.
The research-based teacher's toolkit should be standard reading for each teacher that has a child with a cochlear implant. The guide has been espeically useful for Lily's school. Lily's teacher is very willing and open to learning everything and anything we provide to her. It includes basics information such as learning about CIs and hearing loss, working as part of a TEAM, understanding challenges, setting up a classroom and refining and reporting your progress. It is easy and quick to read while providing tons of resource materials.
The company that developed this toolkit is also working on The Cochlear Implant University which will support high school and college students with cochlear implants and their parents as the student transitions to higher education.
The toolkit is a must read for all famlies and teachers who work with kids with Cochlear Implants.
Bodie's first haircut came around his 18 month birthday. No salon. No big cape or fuss. Just Mom and a pair of kitchen scissors. He's quickly becoming a little boy and talking non-stop. He repeats everything wtih ease and says the first sounds of hundreds of words. Some words like "All Done" are very clear. His receptive language is extensive. Full hearing makes it easy.
We've participated in various cochlear implant research studies over the past five years because we feel it's important to give back and help advance the field.
Last week, Lily was in a balance study at Boystown that was trying to determine if there was a connection between cochlear implantation and balance issues. The researchers asked Lily to walk, hop, stand on a balance board, spin around in the dark, do eye tests while shaking her head and twist her head for some kind of nerve measurement.
We learned that Lily had great balance and eye sight. The physical therapist said that knowing she reads really well and can ride a bike without training wheels also indicates that there are no balance issues. All in a days work!
Always in search of new language opportunities, we have now become chicken farmers.
We've watched two chickens grow from week-old chicks to four-month old adults. While they haven't laid any eggs yet, Clarabelle and Isabelle have a nice view of the rain garden and become free range when we are hanging out in the backyard.
Lily has even spent some time reading chapter books to them. See the first picture below. Bodie would rather the coop be a playhouse, but he loves chasing the chickens around the yard and saying "bock bock" each time we ask if he'd like chicken or beef.