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SWC Online Voices

September 2009

Interview With Karen Putz

by Kim Ward

Karen Putz and her husband Joe are two deaf parents raising three deaf children. Karen was hard-of-hearing from early childhood, and became deaf at age nineteen. Many people in Karen’s family are deaf due to a rare genetic condition. Even though both parents had plenty of exposure to deafness, they felt they needed support and information about parenting a deaf child when they were told their oldest son was deaf. Through the internet they discovered the organization Hands and Voices which was a tremendous help to them. Karen went on to establish the first Hands and Voices chapter in Illinois to help support other parents of deaf children looking for information and friendship. Additionally, Karen is involved in several deaf advocacy issues including H.R. 3101: Twenty-first Century Communications and Video Accessibility Act of 2009 — a bill before congress that will require access to Internet videos. In her spare time she blogs about deaf family life in her blog called, “A Deaf Mom Shares Her World” To read more, visit Karen’s blog at www.deafmomworld.com.

Kim: Tell me a little about yourself.

Karen: I was born with hearing in the normal range and grew up hard of hearing. I could never use the phone with any success though and I got through school mostly by lip reading and depending on the residual hearing that I had. I was seven when I was diagnosed and nine when I received my first hearing aid. When I was 19, I was “barefooting” (waterskiing on my bare feet) and I turned to cross the wake and fell. Instead of doing a normal tuck and roll like countless other times, I slammed into the water sideways. For days, I thought I just had water in my ears and that my hearing would come back. From that point forward, I wore a hearing aid 24/7. I have three kids-- David is 16, Lauren is 13 and Steven is 11.

Kim: When did you first learn they were deaf?

Karen: David was almost three when he was diagnosed with a profound hearing loss. Lauren and Steven were four and two when they both became ill with a high fever. Shortly after they recovered, Lauren came home from preschool crying and saying that she couldn't hear. We were so focused on Lauren that it didn't occur to us to test Steven until weeks later when I started to suspect that he had lost hearing too.

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

Karen: It wasn't too much of a shock because I had suspected it for a while and it took forever for the HMO doctor to agree to give us a referral. Both my husband and I at first were mostly sad at the idea that our kids would have to struggle to access communication 24/7 like we did when we were growing up. But our kids are growing up in a very different world than what we did-- they have access to information in amazing ways--via texts, videophones, interpreters, captioning and social media.

Kim: What kind of emotional support, advice and information did you receive upon learning they were deaf?

Karen: Ironically, I was involved with a support group for parents of deaf and hard of hearing children before any of my kids became deaf/hard of hearing. So I was familiar with networking and finding resources. I later joined the board of Hands & Voices and founded Illinois Hands & Voices. Hands & Voices gave me great opportunities to connect with other families.

Kim: Did you do any research into the various options open to your children on the internet, at the library or by asking questions from organizations that support parents of deaf children?

Karen: When David was diagnosed, I sat down to create a webpage of resources for Illinois parents. That's how I found Hands & Voices, which provides non-biased support and information about communication options. I lead the effort in Illinois to create an information packet for parents to receive after learning that their child is deaf/hard of hearing.

Kim: Did you research the option of implantation, ASL or both?

Karen: I researched all my options and talked to many families. I visited every school with different methods of communication and got involved with families using all kinds of communication modes and methods.

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

Karen: By far, it was Hands & Voices that helped me the most and gave me the most resources via their articles and by connecting me with families.

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

Karen: I learned of this when I was in college. I was providing counseling at a local school and met a student who had a cochlear implant with the wire attached directly to her head. She was one of the early patients and could not swim and had to cover her head well to shower. Later, I met many, many people with implants of all kinds and my kids have several friends who use implants. I later went on to write "Twists and Turns, Journeys with Implants," an article about families with varying experiences with cochlear implants.

Kim: You have mentioned in the past that your kids do not wear cochlear implants but you are open to that option when and if you or they feel it could be more beneficial. This leads me to believe they are doing well with their hearing aids. What do you attribute their success with hearing aids to?

Karen: My oldest child is a likely candidate for a cochlear implant and I explored this option for him. I felt that as a parent, I needed to know as much as possible to make a comfortable decision. He did well with hearing aids and we signed to him from the time he was a baby. Since all three kids had normal hearing at one point, that's probably the biggest factor in their ability to use their residual hearing rather well. However, the boys cannot use the phone well for conversations unless they use the videophone with an interpreter. Lauren can use the phone well by auditory means alone.

Kim: What do you think is the biggest factor in their ability to adapt?

Karen: I taught them to advocate for themselves at an early age and I also modeled advocacy myself.

Kim: At what age did you start using sign language with your kids?

Karen: I introduced sign when they were babies. Lauren took off with verbal language at a very young age-- speaking in full sentences when she was just 14 months old. When Steven came along, he was quite different from the other two and didn't take off with language until he was almost four years old. In fact, when he was in first grade, he scored so low on the language tests that I was in tears. The very next year, he soared in language and was like a different kid. We all sat around in the IEP meeting and shook our heads at the dramatic turn-around.

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

Karen: I have found it to be an excellent way to communicate, especially when they were first learning sounds and letters-- the finger spelling helped them to learn to read quickly and the signs helped show language visually when they were learning new words.

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

Karen: My oldest son wanted to explore the cochlear implant in middle school. So we sat down and talked about it and watched some videos. My son has a best friend who has an implant and he felt that his friend heard about as well as he did with his hearing aids. So he opted not to pursue the implant. He knows that option is always open to him if he wants to pursue it.

Kim: What do you attribute their school success to? Have they gotten the accommodations they needed?

Karen: All three do quite well in school. David and Steven are in advanced math and Lauren is in the gifted program. We've done well with accommodations-- there have been times when the FM system has broken down and not gotten replaced quickly enough or no interpreters or no captions on a movie. It's sometimes exhausting having to stay on top of it all when it should be the school district's issues but I've found that parents have to be active and involved to make sure that the IEP is followed.

Kim: How much exposure do they get to the Deaf community? Do they have both Deaf and hearing friends?

Karen: All three have deaf/hard of hearing and hearing friends. Every year, they attend the Lions camp and we do sleepovers with deaf/hard of hearing friends that live far away.

Kim: How big is the deaf and Deaf community in your area?

Karen: Chicago has a pretty large dear and Deaf community with several deaf clubs and two youth programs.

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

Karen: I'm very involved with the Deaf community so my kids know quite a few deaf and hard of hearing adult role models.

Kim: As a parent have you received the support you needed?

Karen: Most of the time, yes, but there's so much more that schools could do to connect families. In my district alone, we have about 60 kids and we know only a few of them. In fact, this summer, we were at the Lions camp dropping off the kids and my daughter met another hard of hearing camper who goes to the same school. They had never met before despite being in the school for a year. How sad is that?

Kim: How has your extended family accommodated your deaf children? Do they sign and make an effort to speak face to face?

Karen: My family is all deaf and hard of hearing but oral. Joe's family is all hearing. My sister knows some sign and Joe's brother recently started a sign class. Everyone makes an effort to speak face to face. We struggle with group gatherings at the holidays when extended members join in. Once they get an animated conversation going, we often can't join in unless someone slows down enough to repeat. In my family, since everyone is deaf or hard of hearing, we know the rules of speaking in groups so it's much easier to have a group conversation as a result.

Kim: How well do your children communicate in English?

Karen: Quite well-- they all score in the 90th+ percentile on tests.

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