Life is Bliss - Lily's Cochlear Implant Journey

FM classroom simulation for kids with hearing loss - Video

Excellent "how to" and "why" video on using an FM in the classroom.  Teachers take note!

 

20 iPad Apps for hearing loss

Here is site highlighting 20 iPad Apps for Hearing Loss.  They range from apps that check your hearing and will find captioned movies, to apps that teach you about hearing loss and provide tools for augmented communication.  

Lily's Dad and I proposed giving a session about this very subject and more at the 2012 AG Bell conference. Hope someone speaks to this incredibly valuable and rapidly growing resource this summer. 

Apps for Kids and Adults with Hearing Loss

Great blog by Tina Childress on Apps for Kids and Adults with Hearing Loss.  These apps can be extremely helpful when teaching kids to talk and listen in ways they love to learn.  

Tina is a bilateral CI user and used to be with Advanced Bionics.  She gave a presentation at Boystown four years ago, which Lily's Dad loved.  She was one of the reasons we chose Advanced Bionics.

All Preschool Programs are Not Created Equal

Good article on Hearing Families called All Preschool Programs are Not Created Equal.  The article examines a study of 8-to-10 year old children with hearing loss who were all in mainstream elementary schools and had always used oral language.

When they compared the outcomes to a comparison group of kids with normal hearing, they found that half of the kids with hearing loss were far behind normal hearing children their own age. But the other half, showed age-appropriate skills, despite their hearing loss.  When they tried to understand the split in the hearing loss group, they saw that all of the kids on age level attended preschool programs that were either specifically for children with hearing loss or private preschools with low teacher-student ratios. The kids whose skills fell behind the kids with normal hearing, all attended special education preschool programs that were not specifically for hearing loss, but had kids with many different kind of disabilities all together.

Pediatric Audiology Free Online Conference - March 14-18

AudiologyOnline Virtual Conference starting tomorrow - Pediatric Audiology-Raising the Bar - Tremendous!!!   Worth signing up if you only listen to Carol Flexer.  A lot of other top notch pros as well.  

AG Bell Scholarships

The Alexander Graham Bell Association for the Deaf and Hard of Hearing (AG Bell) offers several scholarships for full-time students who are deaf and hard of hearing and who are pursuing an undergraduate or graduate degree at an accredited mainstream college or university.

This is a merit-based scholarship program with award selection being extremely competitive. While the number and value of awards varies from year to year. In 2010, 144 eligible applications were received and 18 awards were granted, which ranged from $1,000 to $10,000.

2010 - A Year in Review and Looking Forward

I've been trying to recall what happened in 2010 and the implications or impact on our lives.   It was a busy year that went in many different directions.  Lily has grown in so many ways.  She is a little girl who sees no boundaries. 

Hearing issues still remain a major focus for our family, but it is now very manageable.  Our friends and family have been patient and listened to our never ending rants about hearing loss, technology and the challenges we deal with.  It has become who we are. 

Lily started two mainstream preschools this year and is keeping up or exceeding her peers in all areas.  We still work with SLPs and hearing resource teachers at Omaha Hearing School and our public school. The focus and upfront services have paid off and Lily's expressive and receptive language is extremely strong.  

We were fortunate to start using an FM system in preschool, throughout day at noisy times and in the car.  This has made a big impact.   Hopefully 2011 will bring a new BTE and ClearVoice from AB which Lily would transition to this fall.  Hopefully our advocacy with the public schools for improved acoustics in  elementary schools will mean all kids can have better options for hearing.  

Our passion for travel continued this year and we were fortunate to travel abroad, as well as to Chicago, Pittsburgh, Madison for a hearing study, and we attended AG Bell in Florida to both continue our education and represent the Bionic Ear Association.

LIly is rapidly developing her own interests including dancing, swimming, nature, music and art.   She's starting to read and never stops singing or dancing.  She loves her family and her life-long friends. 

Our families continue to provide major support to making our crazy lives work.  Without them, we wouldn't have the flexibility to go in so many different directions.  Thank You!!  It means the world to us and Lily thrives from your involvement. 

I think 2011 will bring many new ideas and activities, improved hearing and more advocacy, and maybe a grand adventure or two.  Lily loves surprises and so do we.  Who knows what the future will hold.

It's a Small World Moment

On the way home from a long day at Disney, Lily entertained the bus by singing "It's a small world after all, it's a small world after all, it's a small world after all, it's a small world after all, it's a small world after all...........on and on.  She never came to the closure of the song, yet her version was exactly how she heard it in the "It's a Small World ride."  The entire bus was laughing and enjoying the innocence of a child.  Little did they know how truly special the moment was. 

AG Bell Adventure

A few weeks ago we were fortunate to attend the Alexander Graham Bell Association Conference in Orlando.  It was fantastic.  We were surrounded with kids and adults with Cochlear Implants and hearing aids and the teachers and audiologists who support them.  

We attended fabulous educational sessions, like stem cell research, working memory strategies and LENA research studies, as well as volunteered as Bionic Ear Association Mentors on behalf of our Cochlear Implant manufacturer Advanced Bionics. 

In Advanced Bionics' booth, we were able to talk to families and professionals about our hearing journey.  We were able to give back and talk face-to-face about something we feel so passionate about.  We were also able to dream about what will be available for Lily in the future. 

While this was only the second time that we attended this conference, it seemed like we saw many old friends.   There were many returning families with young children like Lily, as well as teachers from the Moog center, staff from AB, thought leaders and researchers like Carol Flexer and icons in the AG Bell/Oral world.  

We also saw Lee Woodfruff, wife of the ABC news anchor Bob Woodruff who suffered a Traumatic Brain Injury when he was covering the war in Iraq.  Lee didn't however talk about her husband at this event. Rather, she focused on her daughter who has a hearing loss.  She told us the story of her daughter's diagnosis to receiving hearing aids, all the therapy and stress in between, and how her daughter is doing today.  It was such a similar story to so many in the crowd, that I think most of the 1500+ people in attendance were in tears.   It was quite moving.

Her book, Perfectly Imperfect (see it posted in the left column) is a great read full of stories and journeys of a wife and mother facing dozens of challenges along the way. 

We returned home feeling rejuvenated and excited about continuing with Lily's hearing journey. More posts to come with details of the sessions and our fun time at Disney. 

 

Getting Ready For AG Bell

 

The AG Bell Biennial Conference is coming up in three weeks, June 25-28, in Orlando, Florida. For those of you still on the fence about attending, we'd highly recommend it. We went two years ago when it was held in Milwaukee a couple months after Lily's CIs were turned on. It was a fantastic meeting place to get one-stop access to experts in speech and hearing loss with informative seminars, research and exhibition areas. Couple that with the opportunity to meet individuals and families living the "hearing journey" and it was a no-brainer for us to attend again. 

For those of you already planning on attending, drop us a note or stop us in the halls. We'd love to meet up and say hello. Lily will be there and we'll be volunteering at the Advanced Bionics booth as well. We're looking forward to a great conference and some fun with Mickey and friends. Hope to see you there.

AG Bell Presentation Materials Now Available

Susan, Lily and I had a fantastic time at the AG Bell Conference in Milwaukee this past June. Fabulous information, insights, and inspiration. For those not able to make it, AG Bell has now made the presentation materials available online. I'd highly encourage you to browse and learn from these. Great research and great info from professionals from around the world.

Also, while not a requirement to download, consider becoming an AG Bell member so resources like these can continue to be available to parents and their families. Happy surfing.