|
It was nearly seven years ago, but Tiffani Hill-Patterson still remembers the words clearly.
"She's never heard your voice; she doesn't even know her own name."
After months of speculation, it was what she expected, but not what she wanted to hear. Now that the words were out in the open, there was no possibility to the contrary, no turning back for Tiffani and her husband Ryan. Their baby girl was deaf.
"Never heard your voice."
Those words, in particular, rolled around in Tiffani's mind as she looked at Riley, her 18-month-old daughter, dwelling on all the times she spoke to her, on all the rock-a-bye-babies and made-up songs that had been sung but not heard.
"We weren't shocked, because we already had suspicions," Tiffani recalls. "Still, even if you think you know, when it's confirmed, it's just devastating. You think that the child you know doesn't exist, all these plans and hopes and dreams are in doubt and, for a second there you're like, 'Well, what do we do know? How is this going to change our lives?'"
Providing a Chance to Recover
When considering the pediatric patient, it can be easy for an audiologist to focus solely on the dignity issues of the child--the self-doubt, problems with bullies and feelings of being an outsider--but, in many cases, it is the parents who face the biggest dignity issues.
"Parents don't want to admit their kids have problems, as it can often be a blow to their own dignity and worldview," says Leigh Kjeldsen, AuD, owner of Valley Audiology in Concord, CA. "They're grieving for the child that they thought they had, and now they realize their child's life path may look slightly different because of the new information they have about them."
Audiologists need to be sensitive to the onslaught of emotions parents may be feeling upon discovering their child cannot hear. While it may seem important and helpful to look forward and just get down to business, sensitivity is paramount.
"Since it's so normal for us because we see this all the time, it can seem like such a process sometimes for the parents to get used to the whole idea," Dr. Kjeldsen says. "One of the things I do with parents is to be understanding and give them time to process. In my opinion the child should get the hearing aids and wear them from day one, but sometimes the parents aren't quite ready for that, so giving them a little time and trying to schedule a few more appointments to talk through any more issues can be helpful."
 |
In the beginning, her parents worried about what she would
and wouldn't be able to do, but Riley Patterson has not been
limited be her hearing impairment or her cochlear implants.
Above, Riley celebrates her second birthday days after
hearing for the first time. |
Tiffani says a similar tactic helped her and her husband cope with Riley's hearing impairment. "The audiologist gave us time to feel whatever we were feeling," Tiffani says. "It wasn't just, 'Your daughter is deaf, you need to make a decision, go ahead and get out.' We were there for a long time; just her explaining the options to us--we were able to sit there and cry if we needed to or whatever. She was there to just let us feel what we needed to feel.
"She gave us all this information, and told us we didn't have to be in a hurry, but if we wanted to do implants, it was better to get started now," Tiffani continues. "There was no pressure to pick one option vs. another; she was very informative, very kind--it was almost like she knew what we were going through; even though she really didn't, if that makes any sense."
Beyond Clinical Care
The first time around wasn't so pleasant. Tiffani and Ryan had been growing increasingly aware of the possibility that Riley was deaf but had kept putting it off. "We had suspicions, but, you know, first-time parents," Tiffani recalls. "We just kind of thought, 'Oh, there's nothing wrong,' and we had family and friends who were like, 'Oh, she can hear. There's nothing wrong with her.'"
Tiffani says this was easy to do, because it was a way to hold out hope. But, after months of doubt, the couple finally mustered the courage to consult with a pediatrician, who suggested they make an appointment at the ENT office across the hall.
There was fear in their hearts as they sat in the waiting room. Having bonded over sports and a love of music, Tiffani and Ryan were afraid they could never share those things with their daughter. They were grieving, and even worse, they blamed themselves.
"We thought was it something I did when I was pregnant, did we do something wrong, did flying to visit my in-laws-did the plane cause this? She was sick for a little while when she was 2 months old, did the medicine do it?" Tiffani says. "It was all about guilt."
These thoughts weighed heavily on the couple, and the unsympathetic ENT only made the experience worse. "As a baby, Riley, of course, is not going to cooperate with putting those little plugs in her ears, and that ENT made us feel so stupid," Tiffani says. "Basically he was what not to do. And he made us feel like our child was dumb or bad because she wouldn't sit quietly and still."
In the end, everything worked out OK for Tiffani and her family. They received a great deal of support from Children's Rehab Services in Huntsville, AL, and ultimately Riley received a successful cochlear implantation. But even now, six years after the surgery, Tiffani still sounds dumbfounded and hurt by the way she and her husband were treated.
"He was just so unsympathetic," she says. "He had no time to sit down and talk to us about what was going on, what he was doing, what might happen-it was basically just, 'OK, your kid's not cooperating; get out of here.' And so we felt really stupid and really angry by the way he treated us."
It can, of course, be difficult to always be sympathetic, especially when one deals with hearing issues on a day-to-day basis. However, it is one of the roles of an audiologist to maintain a compassionate approach, even when it may seem like there's just not enough time or energy to do so.
"It's so important and it can be so hard in the middle of a busy day to see someone who is brand new to the idea and has 100 questions-it's a challenge," says Dr. Kjeldsen. "I think that being a successful audiologist takes a certain personality and skill set that's not always discussed in college."
Continued Counseling
An audiologist's duty to the parents of a hearing-impaired patient does not end once the news is broken. It's common to assume parents will work through the much-discussed five stages of grief and ultimately come to "acceptance," but it isn't always that easy-oftentimes the grief can linger for years. Ellen Kutzer-White and David Luterman discussed this in their paper, "Families and Children With Hearing Loss: Grief and Coping":
"Theories of chronic sorrow posit that the symbolic loss of the dreamed-of child continues over the course of the child's life, as long as there is a disparity between the idealized child and reality. The grief experience is often associated with developmental milestones. For families of children with hearing loss, professionals may witness parents' nonfinite grief when first words are late, birthday parties or celebrations are stressful or disappointing, or when their child encounters the 'glass wall' that separates him from his hearing peers and prevents him from fully socializing because of difficult communicating. Follow-up visits to audiologists, negotiating the Individualized Educational Plan (IEP), or transitions to new schools can also be trigger events. Parental grief and sorrow and the impact of hearing loss on families must be acknowledged then, not only at the time of diagnosis, but over the course of the child's developmental life."1
For this reason, Jennifer Esse, AuD, owner of Daniel Island Hearing Center, LLC, in Charleston, SC, recommends seeing pediatric patients more regularly then older patients.
"Because it's not just the kids, it's the whole family that is involved, you want to make sure those parents are having their kids wear the hearing aids," she says. "Often the kids don't mind wearing them, especially the younger set in that early elementary phase-they think it's kind of neat-but the parents are the ones who say 'The kids are going to tease them,' or 'I just don't have the time to do this,' or 'It's hurting them'. What we work on is counseling the parents and upholding the dignity of the family as a whole."
This all may sound like a lot, but by offering the total patient care package, audiologists can help hearing-impaired children and their families lead fuller, happier lives. Tiffani still credits Riley's diagnosing audiologist for her sensitivity, and she speaks highly of the relationship her family has with Riley's current audiologist. Most importantly, she has fully connected with the daughter she once feared she would be distanced from.
"I'm a huge New Kids on the Block and Bon Jovi fan, and so is she, and being able to share those things with her-it's so much more special after all we've been through," says Tiffani. "We used to worry 'Will she be able to hear? Will she be able to sing, even though none of us can really sing, will she be able to do it anyway?' And now she does; we'll walk in the kitchen and she'll be singing to her Disney Princess' CD or Bon Jovi or whatever happens to be in the CD player."
Tiffani even chronicles her family's successes and struggles in a blog, Sound Check Mama (soundcheckmama.blogspot.com), in an attempt to give hope to other families.
"I want other people to know just because a child is deaf, or has implants, or uses sign language, they can still be normal kids and do the normal fun kid stuff like play sports, and go to movies, and jam out to Guitar Hero or whatever," she says. "It's more of, 'Hey look, my kid may be a little bit different, but she's still normal.' When we first started out it was, 'What will she be able to do, what won't she be able to do?' But so far, there's nothing that she hasn't been able to do, and I want other parents to see that too."
References
1. Kurtzer-White, E and Luterman, D. Families and Children With Hearing Loss: Grief and Coping. Mental Retardation and Developmental Disabilities Research Reviews (2003) 9(4):232-235
Frank Visco is assistant editor of ADVANCE for Audiologists. Contact him at fvisco@advanceweb.com.
|