In June 1999, I was seven months pregnant with my third child. My 21/2 year-old daughter, Laura, was still not talking. I had been suspicious for several months that something might be wrong, but was still rationalizing that Laura's older sister, Sonya, was simply doing all the talking for her. Finally, we took Laura to an audiologist in June and she was identified with a moderate-to-severe bilateral hearing loss. Immediately, I was upset, overwhelmed and had a thousand questions.
My husband Darrell was in denial. Even after Laura was confirmed to be hard of hearing, Darrell still thought that there was something wrong somewhere - maybe the test was just inaccurate. To Darrell, Laura seemed fine. "We would have known if Laura was hard of hearing," he said. This simply could not be true. We are hearing, our oldest daughter Sonya is hearing, and our relatives are all hearing. Therefore, Darrell thought that there is no way we would have a hard of hearing child. The facts just didn't add up to us having a child without perfect hearing, except for that deep nudging feeling in our stomachs that told us we did, indeed, have a hard of hearing daughter.
Over the next two months, Darrell and I both allowed ourselves to accept our daughter's hearing loss and grieve that loss as we gathered information and moved forward with obtaining hearing aids and speech therapy. The information was overwhelming, and it seemed like each question answered for us created one more question. One month after we discovered Laura's hearing loss, the newborn hearing screening law came into effect, in which all hospitals in the state of Colorado must offer newborn hearing screenings to every single baby that is born in this state. Hallelujah!
In late August, two months after Laura was identified, Darrell and I were just beginning to feel like we were getting on track and understanding Laura's situation when our third daughter, Rebecca (we call her "Becky"), was born. Becky was screened at birth for hearing loss. She, too, was identified with a moderate-to-severe hearing loss as subsequent ABR tests confirmed. We were, as southerners would put it, flabbergasted!
Both of us were overwhelmed that we now had two daughters who had such a significant hearing loss. Much work lay ahead as we scrambled around attempting to figure out the new circumstances in which we found ourselves. Honestly, this time in our lives was one of the most difficult to date. How were we going to be able to raise and educate these precious girls with whom we could not communicate?
Intervention came immediately via CHIP (Colorado Home Intervention Program), a state funded organization which provides home intervention services to kids like Laura and Becky, ages birth to three years. Our Co-Hear Coordinator/CHIP facilitator was instrumental in connecting our family with so many important services: in-home speech therapy through CHIP, resource lists including funding sources, as well as lists of audiologists and who specialize in the care of children with hearing loss. In addition, our wonderful CHIP facilitator set us up with a Deaf adult (through CHIP also) who began coming into our home and teaching our family American Sign Language each week by the time Becky was five months old. We are very, very thankful to have had such a committed and caring person and organization acting on our behalf.
While we had great intervention in the early stages as well as professional support, there was one thing that didn't happen in our family that I would like to change for parents of newly identified children/babies today. Our family was not connected to a Deaf adult role model when our children were first identified nor did we feel we were we encouraged by educators, professionals, etc. to learn more about Deaf Culture. Several months later, we received a brochure from our CHIP facilitator, thankfully, about the deaf/hh adult role model program which is funded by CSDB. While this program seems to be an excellent resource, I still think more needs to be done to make sure that no family "slips through the cracks," so-to-speak, of being informed not only about this program, but about Deaf Culture and people in the Deaf community.
When we are faced, as parents, with making the monumental decisions about technology, communication and education for our children, we need to be aware of all of our options. I wonder, even as I type this article, how many parents of deaf/hh children are even educated about the Deaf community and Deaf Culture. I'm afraid the numbers are few. We are cheating our children and ourselves by not being fully informed. No matter what decision you make, it is not only your right, but your responsibility as the parent(s) to make certain that you are fully informed.
In a society that is, dare I say, almost hearing-obsessed and mainstream oriented, we need to remember that we must be accountable to our children someday for decisions we have made on their behalf. We can tell our children we've done the best we can, but have we? Did we get all the facts, or did we ignore some of them, or simply not bother to investigate? For instance, how many times do we, as parents, simply go sit in our deaf or hard of hearing child's educational classroom and observe? I realize these are serious questions, but they need to be asked and answered honestly.
If your family isn't currently connected to a Deaf or hard of hearing adult role model and others in the Deaf community, I strongly encourage you to be proactive in seeking one. This is a program that helps expose you to people who have firsthand knowledge about hearing loss and Deafness.
We not only need to connect ourselves to Deaf and Hard of Hearing adult role models, but with hearing parents of deaf/hh kids and Deaf parents of deaf/hh kids. We need to not only have deaf/hh role models who are an active part of the hearing and hard of hearing community, but we also need Deaf adult role models who are an active part of the Deaf community who are willing to share information about Deaf Culture.
We later realized that not only do we have daughters who are hard of hearing, but their hearing loss is progressive. At age four, Laura's audiogram revealed a significant decrease in hearing from 50-90db to 90-110db putting her hearing loss in the severe/profound category. As a family, we were now faced with new challenges and revisiting decisions regarding her education, technology and communication. Eventually, that hearing actually fluctuated back up a little, but not before being pressured by well-meaning professionals to make hurried decisions that would have had a very lasting impact on our children. Knowing people in the Deaf community as well as other parents of Deaf/hh children has helped guide our decision making in all these critical issues, as well as exposing us to choices that have greatly enhanced our daughters' lives.
Darrell and I are so grateful to those Deaf/hh adults and members of the Deaf community with whom we have become so close. We realized by getting to know these great people that our children's deafness or hearing loss is not a disease or an infirmity. We realized that our children can be fully functioning members of society and have a great deal to contribute. Both Darrell and I can now say, in retrospect, that we would not change our daughters' hearing loss even if we could. We love them so much, just as they are. They have added so much beauty and joy to our lives. We are teaching them that they can do anything they want to do....because they can!
If you are a professional working with families and/or children in an educational, medical, intervention or communicational setting, I encourage you to please give them people an opportunity to connect with Deaf/hh adults and families the first time you meet them. Families need to have this opportunity immediately after their child is identified.
As a parent myself who sees the need for parents to be more educated about and exposed to the Deaf community, I would like to encourage parents to be open to getting to know a Deaf adult and other parents of deaf/hh kids if they haven't already done so. Getting to know these wonderful people can only strengthen a parent's bond with a child and give a fresh perspective of what it is like to be deaf or hard of hearing. My family has benefited in profound ways from connecting with Deaf adults and families. My goal is to make it possible for all families to have this opportunity...from the very first day their child is identified!
Kim and Darrell Swink live in the Westminster area with their three daughters, Sonya (hearing) age 9, Laura (Deaf) age 6 and Becky (severely hard-of-hearing) age 3. They have been members of Hands and Voices since 2000.
Editor's Note: As Ms. Swink's article states, meeting deaf and hard of hearing adults is a very valuable experience for many parents. Regardless of the communication mode of the child, H&V encourages parents to meet deaf and hard of hearing adults with a variety of education and communication experiences, degrees of hearing loss, and modes of communication
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