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Online Support

June 7th, 2009 by | Tags: , , , , , , , , , | 11 Comments »

The internet is such a powerful tool – sometimes too powerful as the amount of information can overwhelm us!  Not only does it provide us with a wealth of information, but also a wealth of support in many ways, such as joining listservs, Facebook groups, and message boards.  In the cochlear implant community, online support groups are certainly a huge part of our lives and are often treated like our bible.  People in many of these online support groups give us incredible friendships throughout the world – I have met a few of the people whom I met through online support groups in person, such as Naomi, Jodi, and Robyn. Support groups can even also provide us incredible urgent care – for instance, a parent on one listserv wrote an urgent message saying that she was out of town with her child who uses a cochlear implant, and she forgot her battery charger for her child’s implant battery.  Several parents, who happened to be located near the mother, popped up and said, “We have a battery charger that you can use!  Come on over please!”

I compiled a list of a variety of online support groups for parents of children with cochlear implant, cochlear implant users, Cochlear™ users, Advanced Bionic Users, MED-EL users, Auditory-Verbal parents, professionals, etc.

Listserv

Manufacturer’s Community

Message Board

Facebook

Blog Aggregator

11 Comments

June 7, 2009 at 9:53 pm

I felt so lost and alone, until I found the wealth of knowledge and community that exists online. CiCircle and DeafVillage have really been life changing on my journey as a mother of a child with hearing loss. Thanks for the list! I found a few new resources!

jodi

June 8, 2009 at 5:42 am

Very useful post!!! Btw, we’re torn between the globe and the tree- everyone is so thankful…above all, me!

Deaf Person

June 9, 2009 at 12:40 pm

There is a facebook group for deaf parents who chose CI for their deaf children. It was a great help for me as a deaf parent.

Rachel

June 9, 2009 at 12:44 pm

What’s the name of the Facebook group, Deaf Person? I would love to add it to the list.

Rachel

June 9, 2009 at 1:07 pm

Lucas’Mommy,

I’m glad to hear that those sources have been a handy for your son’s journey. I know that your son will do well and thrive! Happy hearing!

Rob

June 9, 2009 at 8:08 pm

excellent list of resources for TOD ( teacher of the Deaf )

Deaf Person

June 11, 2009 at 11:10 am

I will ask the moderators for their permission to publish the website address.

April 2, 2012 at 1:59 am

[...] You, or your child, has a hearing loss.  This is called diagnosis or identification of hearing loss (some people prefer identification as ”diagnosis” makes hearing loss sound like a disease).  For parents of babies newly identified as deaf or hard of hearing, HEREare some first steps for you to take on this journey.  Both adults with hearing loss and parents of children who are deaf or hard of hearing may benefit from connecting to others on a variety of online support groups. [...]

Alicia

December 2, 2012 at 4:29 pm

Hi!
I have a deaf daughter who just turned six.
Just 4 days ago her doctors has told us that CI would be useless for my daughter…

Then ive read your article… Same thing as the doctor told me for y daughter…

¨Professionals, including therapists, audiologists and surgeons, did not envision that we’d be able to master these skills. They told our parents that we, the children who were implanted as part of the clinical trials for multichannel cochlear implants, would be able to hear environmental sounds at the most and would not be able to understand any words; however, it would be better than no hearing at all at least in terms of our safety as we would hear fire alarms and sirens.¨

I would really like my daughter to get het Implant but I dont know where to start and where to run… I really need help nowadays as we are running out of time… Please help me… Thanks and hope to hear good news from you soon…

Winden

September 22, 2013 at 4:27 am

Does anyone have data about cochlear implants for single sided deafness success stories?

February 13, 2014 at 6:11 am

Hi, I am a medical student in Boston. One of my friends has bilateral cochlear implants and enjoys listening to a few songs that he has heard hundreds of times. He expressed that it would be nice if there was a place where he could hear other’s experiences with music.

Out of that need, we developed the first website where individuals with cochlear implants can share their music experiences through brief music reviews. 
http://www.edisonparkmusic.com 
We are looking for volunteers to write brief reviews and would love any feedback on the site!
Thank you!