We had fun today! It’s been the perfect day and the babies are taking an afternoon nap. Today was the last day of summer school. In the fall Fiona will be old enough to go all three days and Jack gets to go with her. It’s really difficult to tell how far behind Fiona is in language development. I’ve never really thought of Fiona as having a learning disability, it seems like it’s just as hard for all babies to learn things at this age. But it looks like, at least for the next several years her hearing loss is a learning disability. She needs extra care when it comes to communication, especially teaching her to say what she wants, needs, and feels. It’s impossible to tell if she is slower than Jack on certain things because of her hearing loss or because she’s just different. We just have to wait and see.
When Fiona was first born she didn’t pass the hearing screening done in the hospital. The nurse told us, but said she thought it was a mistake, that the machine had been acting funny. Over the next four days while we were in the hospital they tested her a few more times, each time getting the same result. I wasn’t upset, I don’t know why. Maybe because we had been trying to have a baby for so long and here we were with two beautiful babies. I didn’t really know what it meant. I’ve never known anyone very well with a hearing loss. I worked with children with other kinds of disabilities, autism and mobility issues, but never deafness or hearing loss. The hardest part in the beginning was the reaction of everyone else. The way people would say, “She seems normal, I can’t believe she can’t hear.” Or “I think she heard that, are you sure she can’t hear?” I would have to explain again and again the facts, I still do. People always ask, “Will it get better?” Like it’s a sickness she will overcome.
I had appointment after appointment the first several months. Three hour long audiology appointments where I had to hold Fiona still on my lap with electrodes attached to her head to measure brain activity. One day we had to go to a genetics doctor. It was in an old San Francisco building at the corner of Geary and Divisadero. Fiona was only seven weeks old, still asleep as we met Dr. Elison. He asks us a bunch of questions, we tell him “no, there is no known deafness in our family tree, and no known infections in utero.” The genetics doctor says we can do a blood test to see if she’s positive for connexin 26/30. This test rules out syndromic deafness. I can’t even see how they could find a vein in her little arm. I decided at that point no more tests. We were done.
Dirty Laundry Blog by Jennifer Hynes 