March 17, 2009

Sharing the News, Sharing the Work

When we first learned of Hadley’s diagnosis, we shared the news with just a few people very close to us. Conclusive tests were scheduled weeks in the future and, since there was nothing obvious about her hearing loss, we chose to wait until we had real information to tell. After several months, once we knew her loss was permanent, irreversible, and required amplification, we began to get the word out.

Although I disagree with his communication methodology, David Luterman's book When Your Child is Deaf: A Guide for Parents helped us to understand the reactions that other people might have, especially family members who might need some time to grieve. While Dan and I had moments of sadness, for the most part we were too busy developing a medical support team for Hadley to dwell much on the what-could-have-beens. This diagnosis was only life-altering, not life-threatening. We quickly had a core group of family and friends who were ready with the support we needed.

Hadley received her first set of hearing aids when she was six months old, then started AVT sessions the very next day. Suddenly, we had so much to learn-- all at once! We made sure that people who had regular, frequent contact with Hadley learned how to insert and take care of her hearing aids. Several family members attended AVT sessions with us, participating in activities and learning how to best interact with Hadley to flood her with language. We explained AVT as the method with the broadest possible outcome: a girl with a hearing loss who would listen, comprehend, and speak like any other person.

We were fortunate to have many people take a close interest in Hadley's development. Family members played a huge role (and still do), in a variety of ways. My parents were daily visitors during the week, reinforcing all that we were doing in AVT sessions. For several years, my aunt hosted a weekly playgroup for me and her daughters, where Hadley could hang out with kids around her age and start to figure out all the social intricacies. Hadley learned to use the telephone through frequent phone calls from my brother. Hadley was also lucky enough to have four great-grandparents who delighted in her, and constantly reassured us that "she'd be just fine, she doesn't miss a thing." Many friends checked in frequently with us, not getting upset when we'd be too busy (or, really, too tired from talking all day) to return a call or get together. Our friends with children let me drag them into games and activities that reflected goals we were working on in AVT. One friend used to agree to a playdate, then automatically ask, "What do you want to work on today?"

We have heavily relied on the network of family and friends who understood what we had to do to get Hadley to listen and talk. Along the way, there have been some people who haven't understood the choices we have made, whether it was the communication method, lack of sign language use, or just the plain fact that for several years, we put Hadley's language development first above anything else. We did what we had to do to get as much language into Hadley as possible, then attempted to shove a little more in there too. If we ruffled a few feathers along the way, so be it. We wanted the broadest possible outcome: a girl with a hearing loss who would listen, comprehend, and speak like any other person. We've got that, and more.

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