Jessica's hearing loss was finally diagnosed at age 3 1/2. We had taken her to doctors, audiologists, speech language pathologists, psychologists, child study teams and play therapists. Our pediatrician thought I was overreacting because Jess did not speak. She appeared to hear at times but we were unaware we were giving her visual clues. For instance, we would point to something and say "pick it up" and she would and we would think, "O.K., she heard us." Jessica is very bright and at the very first hearing test, she figured out that when the audiologists shoulder was moving she would look up to see the monkey light up. She passed 4 hearing tests this way.

Everyone had a different opinion. The pediatricians thought that she would talk when she was ready. In the meantime, her two older sisters were doing the talking for her.

The psychologist thought she was selectively mute. I later found out this happens with severely abused children! My mother-in-law thought she was just stubborn.  

We enrolled her in a pre-school for children with communication disorders. One day the teacher would write that, "Yes, she definitely hears." The next day another noted, "We don't think she is hearing us."

Jessica was a happy funny kid but would have TERRIBLE temper tantrums when she was trying to tell us something. She had night terrors and once I caught her crawling out a window in the middle of the night, sleepwalking. I was at my wits end and also nine months pregnant with my fourth child.

I finally got permission from my doctor and insurance company to have an ABR [Auditory Brainstem Response, an ‘evoked potential’ test with electrodes measuring the brainwave responses to sounds, which does not require a behavioral response from the child-Editor’s note]. At the hospital where it was performed, they, at first, did a regular hearing test. They came out and said she passed and don't bother with the ABR. I insisted. They said it would take an hour. Three hours later they came out and said they wanted to continue sedating her and did it a third time.

It turned out she had a severe hearing loss. They said they had never had a child fool them like Jessie had. My initial reaction was relief. I knew something was wrong and finally I knew what it was. I then went about trying to learn more.

I think I was on the phone for about a year. I called everyone -- from other parents to leaders of deaf organizations.  My advice to any parent when they get this diagnosis is to get a filing cabinet because you are going to need it.  

My school district said there was no preschool for hearing impaired children. I found an excellent one, 75 minutes from our house. I insisted the school pay for it and the bus ride.

It was very difficult for me to put my little girl on such a long bus ride every day. I sewed her a little pillow in the shape of a briefcase and she took her naps on the bus. We started signing immediately, getting books and tapes and working with the language her school was presenting her.  

We also got her appropriate speech therapy. She got hearing aids. A very patient audiologist, Rachel Kreimer Olanoff , got the first accurate hearing test that allowed her to be amplified. She was very happy with her aids for about an hour, then she wanted them off. The recommendation was to allow her to wean her into them. I knew that if I gave her the option they would be out more than in.

The first day, we gave her a big bag of M & M's (forbidden in our house - candy). As long as the aids we in she kept the bag. Happy and sorry to say this worked. She has been a hearing aid wearer since that day.   

We found out that Galludet University in Washington, in DC had a family learning vacation where  we all went. The kids had camp and the parents had school. This was a wonderful program where we learned, had panel discussions with deaf adults, technology experts, etc. I was very heartened when one of the deaf counselors came up to me at the end of the two weeks and said "of all the families here, I think yours will be very successful in making the right choices for Jessie."  

We taught Jessie to sign first, it was vital to get information into her. Speech came later but is now very, very good. Our goal was to allow her to function in both worlds, the hearing and deaf.

Our family enrolled in a deaf club.  We made sure all events were assessable for her. We got captioning for our TV and it improved everyone's reading skills. I researched good schools for Jess. When they were not available, I went to the State Department of the Deaf and demanded them. There was a need to secure good schooling in a mainstream situation.

For Jess, I didn't feel that a deaf school was a good option.  I was not ready to send her away at age 5. I started a support group for parents and that was invaluable. What I didn't find out, another parent
did.

I am fortunate that I had two daughters before I had Jess so it is easy for me to separate normal behavior from deaf behavior. It is apparently all normal behavior.

The biggest problem in our family is communication. At parties, etc. Jess tends to feel excluded. I feel a real effort is needed from everyone to make it so this doesn't always happen. Miscommunication and hard feelings can be a daily occurrence unless we are vigilant that everyone is understood.

Something I feel that is very important is my quote "Know your rights, but pick your fights."  I needed to know what Jess was entitled to in our school district but go after the big things and let little ones go. I didn't feel it was in Jessie’s best interest to have conflicts with every professional we dealt with. I really believe you catch more flies with honey than vinegar.

Jessica's great success, however, comes from Jessica. She has always been hard working. When she needs something she doesn't give up till she gets it. This serves her well. We had been very blessed with some wonderful teachers, interpreters, etc. It has taken a village to raise Jessica and her success shows it.

Mrs. Marta M. - USA