Whew! Update...

It's been a long while since my last post. My husband is in the Army, was in a unit that deployed to Afghanistan. To say our last couple of years was busy would be a huge understatement. I think we moved just after my last post, and moved again a few months ago. Whew! Matthew is now 11 and in his 9TH SCHOOL (I know, can you believe it?), fully mainstreamed in 6th grade and doing real well. Joshua is now 6, and in the first grade at a school for deaf children. He has been diagnosed with additional disabilities, and while he does get use of his cochlear implant, his main form of communication is with sign language. It's amazing how each child has the exact medical diagnosis (Pendred Syndrome: Mondini Dysplasia, Enlarged Vestibular Aqueduct, Hypothyroidism), but they are also so very different from one another in their skills and abilities. As I've always said, "What works for one child may not work for the next."

Unfortunately, we've seen some poor educational support in the last couple of years. It took the school district over a year and a half to get FM Systems (read: assistive technology) to use in school. Before this district, Matthew had used an FM in three other schools/districts, and of course that was written into his IEP. I won't go into detail what all happened when I was wrestling with the school district, but it really helped to find a lawyer who could help. Fortunately only had to drop his name, and the FM systems were ordered that week. While Matthew did very well w/o the FM system for OVER A YEAR, his teachers noticed a huge improvement in his comprehension and attentiveness in school once he had one (no kidding, really?). Joshua's discernment had greatly improved, too.

Joshua has the need for additional OT, PT and speech classes. The last district didn't have OT (so he tested out of it, of course), and spotty PT and speech. Fortunately, the program he is in now at a school for deaf children has ALL of those on staff. I was almost in tears, okay, I cried at his IEP meeting when I heard all of the support he would have at his school. We're still an Army Family, and I know that very well means we may move again. I try not to think about that, because I fear ever going back to a district like the one we just left.

Well, I'll post more. It feels good to be doing this again. Right now I'm headed toward a very large, fresh cup of coffee. One boy is already on the way to school, and two more need to get up. ;)

Seminars for Parents of Children with Cochlear Implants

I just posted about The Listening Room and Hearing Journey, but wanted to add a link to GREAT online courses for all types of folks associated with cochlear implants.

The Bionic Ear Association offers live and recorded web classes for professionals who work with cochlear implant recipients, adult CI users, as well as parents of CI children. You can find a schedule of live classes, as well as a list of recorded presentations here. I've personally been soaking up all the classes I can that are related to the Listening for Littles program.

I have three boys, two deaf with cochlear implants. I am SO THANKFUL for all of the resources I've found through the internet! There is much more information available to us since our first son was diagnosed deaf almost seven years ago. ;)

The LISTENING ROOM!

I THINK I've blogged about this before, but if so I feel the need to share again. I am finding GREAT resources for both of my CI boys at The Listening Room! My CI boys are now 4 and 8, with very different oral and auditory skills, but I find the activities from the Listening Room to be great for both of them. There will be additional resources added for Teens and Adults soon, too!

"A web resource full of (re)habilitation activities and ideas to support the development of listening and language skills in children, adolescents and adults."

The Listening Room is part of Hearing Journey.

"If you or a loved one is on a journey to find the best possible hearing, you have found an online community of fellow travelers who are on the same journey. A journey filled with hope and exciting possibilities for a brighter hearing future. You'll find lively discussions, new friendships, and reliable information on the latest in cochlear implant technology here. Wherever you are in your hearing journey, we warmly welcome you. Come on in!"

These are a couple of sites I'm really enjoying, just had to share them with you. Enjoy! ;)

Auditory Skills Practice!

I have just discovered that our library subscribes to TumbleBooks, a virtual online library of books and games for young readers! While it's $29.95/year for a family to subscribe to this service, if you Google "TumbleBooks" you will find links to many libraries that have already subscribed to the service, offering it to you through them. Here are two places to find TumbleBooks:

North Greenville Public Library (also has links to kids' eBooks, cool sites and more online games)

Contra Costa County Library (again, a bunch of OTHER cool links as well)

FUN!

When going through the Story Books, I've found them well illustrated, and the words highlighted as they are spoken. I'm sure my 6 year old "hearing" child will love these books, but I'm also hoping the highlighted spoken words will help my 8 year old son w/CI improve his auditory skills and literacy by following along with the stories. ;)

OOOOH! Just found another good resource:

Starfall, "Where children have fun learning to read!" Good phonics/auditory skills practice, too.

Enjoy!

Have ya heard about the new Harmony?????

My boys don't have the new Advanced Bionics Harmony BTE processors yet, but I've been keeping my eyes open, looking for experiences others have to share w/the new technology. Here's some of what I've found:

Michael Royer's video on YouTube (video is a little shaky): "A brief look into my hearing loss and using the Harmony processor."

Michael Royer's Blog: Where he shares more of his experiences.

The Bionic Sound Project: "Twenty-something female from the united states. lives and breathes for music and sound. profoundly deaf since birth. unknown cause of deafness. bilateral hearing loss between 95-110 dB. type of hearing loss is sensorineural. loss identified at 2 months old, fitted with hearing aids at 4 months old. mainstreamed entire life. learned sign at age 17. tried for FDA trial in 1997, missed cutoff by 1% due to doing too well. has gone through the evaluation process at least 4 times, and got scared. finally took the plunge and implanted july 2006." Blog.

A Music Lover's CI Journey Very neat reading.

Other CI stuff:

What a CI Is, How it Works: Great little video, great info.

Tehya's Activation: "The day that we had been waiting for - FINALLY! We were all very excited during the session and were thrilled that Tehya had the reaction she did." Video.

Jodi Speaks Her Mind: A blog that includes info on how her implanted daughter is doing. I love my boys, but this little girl is so cute!

Cochlear Animation: VERY neat video clip.

Bionic Ear Buddy with CI Equipment

Yes! You, too, can be the proud owner of an implanted little monkey! Click here for more info...

We received one of these when Little Guy was implanted, but I'm thinking about getting another. Believe it or not, in my very chaotic home, we have yet to loose Bionic Buddy's processors. Not yet, anyway. ;)

Devon on Young and Restless gets his Cochlear Implant Activated!

Oh, my gosh. I was going to wait and post later, but I'm watching the CI activation on The Young and Restless right now, and I'm in tears. Goosebumps. Totally.

I'm taping the show on my computer right now (Yeah for TV tuner Bday present!). I don't know how to post what I tape, but I can figure it out and I will post the activation scenes later. Wow. How VERY COOL!

Yeah! Here they are! Hey, sorry for the poor video quality, best this tired mom could do. AND if the closed captioning bothers you, just think about how frustrating it would be if you RELIED on the captioning. I included the captioning for a reason. ;)