My husband John and I live in Omaha, NE with our two children, Elani & Jasper. Our son Jasper, elder of the two, is 5 3/4 years old who loves singing and also has a bilateral conductive hearing loss. He was given the genetic description of Goldenhars or O-A-V which usually produces a conductive hearing loss. His type of hearing loss does not need CI’s but instead he uses a conductive hearing aid. He was diagnosed at 2 months of age and was aided with an analog Phonak aid at 5 months of age.
As a parent it has been an amazing journey learning all about conductive loss, meeting new people and dealing with new challenges such as conducting a personal fundraiser to raise money for a digital aid 2 years ago to replace the first one. Now we are grateful he has the use of a BAHA digital conductive aid. He is very responsible with it and he loves his hearing aid! At first we chose to use Total Communication with Jasper, but lately he has led us to realize how verbal he desires to be and we respect his choice.
Jasper attended pre-school at the Boy’s Town Lied Learning and Technology Center for 2 years. This fall (2011), he will attend home-school along with being a speech only student at a local elementary school. We are excited Jasper will be working with a great speech & language pathologist.
We have been a part of the Nebraska Hands & Voices organization since it started in 2006. When we first learned that Jasper had a hearing loss, I worried over friendship needs, parenting issues & whether he could understand “I love you”. I was inspired to help others when I heard Janet Des Georges speak as one parent to another not just as another source of information. I wanted to give support to families who are just beginning to walk the journey. Therefore, it was mutually beneficial to begin a playgroup for Nebraska Hands & Voices. I enjoy hearing every parent share their unique story and realizing how much there is in common among our paths.