Sunday, January 17, 2010


Yesterday we had a BYOB: Bring your own Barbie party for Sofia Madyson's seventh birthday. And a good time was had by all...singing, dancing and dressing up those Barbie dolls.

Two days ago I assisted another family in Pisa. I observed another series of testing to determine whether a twenty-two year old Deaf University student is a potential cochlear implant candidate. I observed as she continuously said, "Oh, I'm not good" after every single exam on her ears. On her ears. To translate ear testing into a general statement of "I'm not good" is the best example of how hearing loss affects a person that I could possibly give. Because her ears don't work well, she doesn't work well?

Quite the contrary. This girl is so intelligent that she is able to combine speechreading skills, with what little hearing her hearing aids supply together with her intelligence so that despite any loss of hearing, she has managed to achieve all that she has achieved today. Yet, when she tests those ears...she isn't good. How do you reprogram a person to understand that it's not HER who's being tested, it's those damn ears?

One of the most painful things to watch again and again. She is a candidate for the ci, but she's scared and righfully so, but if one hearing aid provides absolutely no gain- and you have nothing to bet on yourself to give yourself more opportunities.

Is it more difficult to decide for your child..or more difficult to watch your child have to decide for herself to have the ci surgery?


Ann Porter of Aussie Deaf Kids sent this message to the GPOD (Global Coalition of Parents of Children who are Deaf or Hard of Hearing:

I thought I should update you on my research in Bali. I found an Australian group who are working with deaf kids in Bali called Bikabele - Last Thursday, my friend and I went and met the audiologist for their program Narno Supangat. He works at a clinic in Denpasar and does newborn hearing screening at one of the hospitals in Bali (Sanglah which I think is the largest public hospital there). He works with an ENT there – Prof Wayan Suardana and they do OAEs on Day 1. The screening is free but, unfortunately, if the family can’t pay for the aids and habilitation things become difficult. Bikabele assists Narno and the Prof with Bikabele Swara-Swari Institute to provide habilitation to disadvantaged pre-school kids. 50% of the kids who go through their program are able to go to mainstream schooling. I was so impressed with what these guys are achieving on next to nothing. I am trying to find out more about what support they provide families but the language is a bit of an issue. Anyway, our family will work with Bikabele to help the family we met in Kuta.

The incidence of hearing loss in Indonesia is 5 per 1000! It is mainly due to infections – rubella and CMV.

*All of my love and support to the families of Haiti*

Sofia just walked up to me to show me her Barbies: "Mommy, look how I dressed them..aren't they beautiful?"


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