My independent learning project this semester is: Listening and Spoken Language Outcomes for Children who are Deaf with Multiple Disabilities… and I need your help! My goal is to determine the current state of research as well as real-world practice in the field of LSL for children who are multiply involved. Is listening and spoken language a viable option for these children, if that is what their parents desire? Are professionals aware that LSL is an option for these children? What modifications (if any) should be made to a conventional AO/AV program?
Are you a Deaf+ Kids (or grown-up)? Are you the parent of a child with hearing loss and multiple disabilities? Are you a professional working with Deaf+ Kids? I am looking for your opinions on the following topics (or anything else you might want to share):
- If you are a parent of a Deaf+ Kid, do you feel that professionals have given you the option to choose a listening and spoken language outcome?
- If you are a professional, approximately what percent of children who receive cochlear implants through your clinic have multiple diabilities?
- How are parents counseled regarding communication options for children with multiple disabilities?
- What factors have you noticed that contribute (either positively or negatively) to listening and spoken language outcomes for your patients who are deaf with multiple disabilities?
- Have you had success with cochlear implantation (if the child is a candidate)? Have CI teams been receptive to the idea of children who are less than “ideal” candidates receiving a cochlear implant? What about bilateral implants?
- What, if any, adaptations have you made to a traditional AO/AV program?
- Any other comments or observations you’d like to share about listening and spoken language outcomes for children with multiple disabilities?
All comments will remain anonymous in the final report, and I’ll be publishing my findings on this website once the project is complete. Thank you in advance for sharing your thoughts.
Danny was born with symptomatic CMV, and as a result, everyone expecting him to be very Deaf+. Despite the fact that we were being told to expect numerous other disabilities, once we knew he was deaf, everyone treated him no different from “just” a deaf child as far as presenting options was concerned. Maybe it is because we are in St. Louis, but while they presented signing as an option, most people assumed we would be pursuing LSL.
As we visited deaf schools, they would tell us how much experience they had with cCMV children (usually said they had 2-3 kids currently enrolled). We WERE warned that, while LSL was an option, we would probably have to work harder for it and could not assume a “perfect” outcome; it could take much more time and work for Danny than a child without all the extras. However, they always made it clear that they believed he had a fair shot at LSL with the right equipment and therapy.
Other than concerns for wearing the processors due to physical delays, our surgeon felt Danny was a “perfect” candidate for bilateral CIs, and he was not (by far!) the first disabled or compromised child our team implanted.
Today, I’m thankful everyone was so option to LSL for Danny, especially considering his other complications from CMV have been much less than everyone expected of him. His attention span and learning level are lower than an age appropriate level, so our AO/AV program is slower of course, but otherwise we don’t have any adaptations.
Comment by Kel — March 9, 2010 @ 6:25 am
Hi Rachel,
Great questions.
The only thing I can say about children with multiple disabilities including hearing loss is that often times people tend to focus on the more “visible” disabilities and forget that he or she has a hearing loss. For example, one of my students has Downs Syndrome and a moderate to severe hearing loss. I have to constantly remind people that she has a hearing loss too which should receive just as much attention that is being paid to her Downs Syndrome.
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Comment by Elizabeth — March 12, 2010 @ 8:52 am
Just sharing my feedback on the quote “Deaf+”, I am Culturally DeafBlind and do take slight at the quote “Deaf+” because it implies social stigma.
We do not see “Hearing+” so why should the “Deaf+” be allowed social stigma whereas the hearing is exempt from this.
I hope you reconsider using “Deaf+” next time you blog.
Comment by Patty Keen — April 21, 2010 @ 9:46 am
[...] few months ago, I posted THIS asking for reader opinions and feedback on the subject of children with hearing loss and additional [...]
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