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SWC Online Voices

September 2009

Interview With Val

by Kim Ward

Val is married with two young deaf children — Gage, 8, and Brook, 5 — who both wear cochlear implants. Neither parent had any deaf relatives or exposure to people with hearing loss prior to the birth of their son Gage, who was born with Goldenhar syndrome, a rare congenital abnormality that affects the head and spine. Doctors are still researching the cause of Goldenhar which seems to strike randomly. Goldenhar can be serious, even life-threatening, but Gage was lucky. He was only born deaf. He got his first cochlear implant at age three. Brook passed her newborn hearing screening with flying colors, but by nine months, Val began to suspect she also had a hearing problem. She was right. A second test revealed that Brook had a moderate to severe hearing loss which quickly deteriorated. She was implanted a few months later. Both children are now bilateral. Val spends much of her time advocating for her two children, and supporting other new parents with deaf children through her blog “Cochlear Kids.” To learn more about these two adorable ‘cochlear kids’ go to www.deafkidscanhear.blogspot.com. Additionally Val is a blog moderator for a blog aggregator called “Deaf Village,” a collection of blogs about deaf family life and support services. Val has recently published a guide for parents of deaf children called I’m All Ears.

Kim: Tell me about yourself.

Val: I am Val, hearing mom. My only two children are deaf and both wear bilateral cochlear implants. Brook is 5, Gage is 8. I am stay-at-home mom currently with lots of volunteer activity I manage daily into my schedule, which all involves helping parents of children with hearing loss.

Kim: What kind of exposure did you have to the d/Deaf community prior to learning your children were deaf?

Val: None.

Kim: What was your initial reaction upon learning your children were deaf?

Val: I was relieved that so far that was all they had found. Gage has Goldenhar Syndrome, so I really had bigger health concerns that I was worried about; the deafness was a concern but not anything life threatening! We told the speech therapists and family that we would all learn ASL. I assumed that was our only communication choice as I was ignorant on the subject.

Kim: What kind of emotional support, advice and information did you receive upon learning about your Gage’s deafness?

Val: We were handed Choices in Deafness. We discussed our communication options with family (who were of tremendous support) and with professionals. We took a couple of weeks to make that decision as it seemed so very important. We chose oral at first to see how he did, we wanted to see if he had enough aided benefit to learn to hear and speak as best he could. We knew we could change that at any point if we needed to. He was only four months old. We did do a few baby signs with him, but he didn't respond and progress well with that particular manual communication.

Kim: Did you research information on the Internet, at the library or by asking questions from organizations that support parents of deaf children?

Val: In the beginning no, we had no idea there was so much information out there. I had heard of cochlear implants but we weren’t “there” yet this early in the diagnosis. That came almost two years later for us. We relied on professionals to give us info. I didn't own a computer at that time.

Kim: Which organizations helped you the most? What did they do to encourage you as an effective parent?

Val: Our professional clinics (ENT and audi and Alabama Institute for the Deaf and Blind) let us as parents make the decisions, but gave us info both verbal and printed materials to help us decide what was right for our child and family. They gave us constant encouragement telling us we were doing a great job as new parents. They were fabulous and allowed us to keep our parental roles but still guided us in a very positive manner.

Kim: How did you first learn of the cochlear implant?

Val: Ironically I watched the surgery on the Discovery Channel when I was pregnant and about to deliver soon; I couldn't sleep and that was the only thing on TV.

Kim: Was the implant presented to you as a "cure" for deafness or simply a more powerful hearing instrument than hearing aids?

Val: Never a cure, only more powerful than hearing aids if the hearing aids didn't work well.

Kim: Do you consider the implant a success?

Val: Absolutely.

Kim: Did you feel you had realistic expectations of the effectiveness of the implant and has it performed as well as you expected, or better?

Val: I had low expectations. I actually didn't think my son would ever really have the great success he has with his CIs. I was hoping for awareness of environmental sounds at least for safety concerns as a parent … cars approaching, wild animals since we live in the country, etc.

Kim: How was your child's adjustment to it?

Val: He fell in love with sound almost immediately. He laughed at his initial stimulation and has enjoyed sound ever since. Both of my children have a sense of appreciation for sound, whereas hearing people usually do not. They get excited to hear birds, or rain, and we just ignore such.

Kim: Have your children ever expressed a desire to learn ASL or meet other Deaf people?

Val: No. My son has made it clear he doesn't want to learn ASL, but my daughter does. He's more on the lazy side and it just doesn't interest him. I'm fine with that, since he doesn't need it to communicate at this point. Brook loves doing finger spelling and little signs and I'm just as okay with that as well. She doesn't need it either for communication, but I'm happy to teach her some signs since she enjoys it. Both are exposed occasionally to children with hearing loss but have no desire to connect with Deaf adults. They are children and connect best with kids. Their hearing impaired teacher has one CI anyway. It doesn't seem to interest or faze them at all; she's just a teacher to them.

Kim: Why or why not did you pursue sign language as an option for your family?

Val: We only pursued it when we needed it for communication but my child didn't progress with it. It seemed to confuse him more than help so we held off. Brook was exposed as a more fun sort of additional way to communicate instead of a necessary mode, and she enjoys what little she knows. But doesn't use it unless I ask her to. It's more like a game to her.

Kim: At what age did you start teaching them sign language and why?

Val: Gage was very young but Brook was four. We don't actually teach it; I've just showed her some signs, and she likes Signing Times on PBS.

Kim: How successful has sign language been as a way to communicate with and teach your children?

Val: Not used as communication mode exactly, as I explained with the second child. Tried with the first one. Not successful.

Kim: Have your children ever expressed a desire to hear better?

Val: As infants they didn't know they could hear better, but once they could (after receiving CIs) they expressed joy and appreciation when they had their CIs on. In fact my daughter used to kiss her CIs goodnight in tears, wanting to keep them on all night, but she finally got used to the fact she could just put them on in the morning.

Kim: How much exposure do Gage and Brook get to the Deaf community?

Val: None.

Kim: How big is the d/Deaf community in your area?

Val: Non-existent.

Kim: Has the Deaf community reached out to you in any way? Did you ever try to reach out to them?

Val: Only online. Most was very positive, some was very negative.

Kim: How has your extended family accommodated your children? Do they sign or would they learn sign language in order to communicate with them?

Val: They've accommodated well, some would have learned sign and some would not have…sad but true!

Kim: How well do your children communicate in English?

Val: My kids are at the top of their classes and have no issues communicating. They remain very vocal with or without their processors on, and they understand that others can hear when they can't.

Kim: What do you attribute your children’s success in communication to?

Val: I think their success is great teamwork from all agencies, and keeping everyone on the same page so we all are working together. We have a huge support team that now extends to our online communities of families as well. I think my childrens’ success can be measured best with their happiness rather than their voice qualities, and we are satisfied and happy with our decisions.

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