Wednesday, July 9, 2008

My Experience as a Parent of a Newly Deafened Child

We entered the world of “having a deaf child” in November of 1998. One day, my beautiful baby was getting over a mild case of the flu. The next day she was in critical condition at Children’s Hospital with bacterial meningitis. By the time our 7 month old baby was discharged from the hospital, she was profoundly deaf.

Many parents, upon learning about their child’s hearing loss, are devastated. We came at things from a different perspective. Our beautiful baby was still alive! Her brain was undamaged. No stroke. No blindness. No blood clots. She did have seizures during her illness, and had to be weaned off the anti-seizure meds, and she needed a ventricular shunt because she developed hydrocephalus, but she was alive. And, oh yeah, she was deaf.

We immediately started educating ourselves about hearing loss. Our first reaction was to learn ASL. However, none of the ASL programs included any verbal component. Our audiologist explained about the cochlear implant, and also that the Deaf Community was by-and-large opposed to it. But we were determined that the meningitis would not take any more from our daughter than it already had, and if the implant could give her back some of her hearing, then we were all for it. We ended up choosing Signing Exact English, because we could speak and sign the same thing, and that was much easier for us, as well as being a good tool to teach verbal language with the aid of the implant.

What really horrified us was how negative the Deaf Community was to people who had gotten implants. At that time, there was much more hostility than there is now. There was no middle ground or any kind of acceptance of the people who got implants. As soon as you had one, you seemed to be ostracized. At that point, we just chose to turn our backs to the Deaf Community, and concentrate on providing our daughter with everything she needed to develop language. The Total Communication early intervention group was very supportive, and the families of other kids who also had implants became our community. Our daughter proved to everyone how important early implantation really was. Because of the meningitis and the beginnings of cochlear ossification, she was implanted quickly, just after her first birthday. She only spent 7 months without any hearing. Her sign language flourished, and so did her speech. By the time she entered kindergarten, she was above age level for both verbal language perception and expression, and she was already reading at the first grade level.

Today she is fully mainstreamed and going into fifth grade. She is starting to learn ASL, and enjoys talking to “deaf people who can’t hear” as she puts it. She thinks she either wants to be a swim instructor or an ASL interpreter.

If we had been accepted into the Deaf Community when she was a baby, without prejudice against her implant, she would have already been well immersed in Deaf Culture, and fluent in ASL. When I see the continued “war” against verbal options, AG Bell, oralism and parental choices I just cringe. I know how new hearing parents will react. I fully believe that bilingualism is the best option. I support ASL in concert with English (verbal and written). But in order to get the right message to the hearing parents of deaf babies, that message must be positive. No finger pointing, accusations, talk of “audism” or angry painful rhetoric is going to get the job done. That will simply send them running away as fast as they can. They will turn their backs just like we did.

DBC can be successful at either rallying Deaf adults against AG Bell, OR it can be successful promoting ASL to new parents. Not both. DBC needs to pick ONE message, and concentrate on it fully.



Dianrez said...

Precisely, K.L., bang dead on. DBC cannot split itself effectively between two needs: healing the Deaf community of past mistakes, or reaching out to the parents of future Deaf children. Both are emotionally demanding and needing of full attention.

K.L. said...

Hi Dianrez,
Yes. Both goals are important, and needed. However, they cannot be done together. They are two different issues, and they need and deserve individual attention.

starrynight said...

Good story. I could imagine what my hearing parents went through when they found out that I was deaf as an infant. They didn't know what to do and got some advice from a doctor. They placed me in an oral program but I couldn't hear well enough with hearing aids that the oral method didn't work for me. So they moved me to a TC program at a regular school and I've been mainstreamed there till I graduated. My parents also learned sign language and I appreciated their efforts but I sometimes felt left out in my hearing family as the only deaf member. If I was born today, they would have given me a CI and I would probably not feel left out in my family gatherings and neighborhood.

DBC have to respect parents' decisions to implant their children. It makes sense to hearing parents that deaf children have only four human senses without hearing and a CI would give them the hearing sense. DBC could only encourage but not force them to learn ASL from the start. I'd like to hear their position on CIs, too.