One of my favorite things to do as an Auditory Verbal Therapist is to meet with families of newly identified children for their initial evaluation. It’s such a privilege for me to be able to walk alongside families as they take their first tentative steps into the world of hearing loss. Thanks to universal newborn hearing screening, the families I see often have children who are just a few months old. These families are dealing with not only the typical new parent emotions, exhaustion, and joy, but also the added shock of realizing that their baby has a hearing loss. And on top of all that, they’re faced with the monumental question, “How do you want your child to communicate?”
Giving a communication options talk is a task fraught with emotion and opinion. For professionals, pretty much anyone who knows enough to give a thorough talk also knows enough to have a strongly formed opinion in favor of one communication mode or another. For parents, communication options present a tremendous amount of information at a very emotionally fragile time. How can we, as therapists, give parents the full array of options in a compassionate manner (because they absolutely deserve both: all options and compassion), and help them come to a communication decision that is truly their choice: the best option for their family and their child.
I find that the most effective way to eliminate bias from the communication options conversation is to let the parents do the talking. I do this by asking a few simple questions:
Tell me about your family… Usually I say something like, “Who are the important people in X’s life?” This question starts our discussion by centering it on the child and the family, not “the hearing loss.” It helps the family feel that they are the experts and I’m here to learn from them, not the other way around. I like to say “the important people” versus “who is in your family?” because different families are constructed different ways. Someone who isn’t blood related to the child (say, a favorite neighbor or a surrogate grandparent from the family’s religious community) may be just as much family as the child’s biological relatives. It also gives me the opportunity to ask questions about how the family communicates (language(s) used in the home), any history of hearing loss in the family, who spends the most time with the child (one or both parents, an in-home caregiver, daycare providers, etc.), and other things that are crucial to understanding the unique culture and circumstances of this family.
Tell me about your child’s hearing loss… This gives me a chance to hear about the child from the parents’ perspective. What has their experience been with the newborn screening process? What do they understand about their child’s degree and type of hearing loss? Do they have accurate information about amplification options? The way parents respond to this question also gives me great information about where they are in the process of coping with the discovery of hearing loss, as well as their level of readiness for more information (familiar sounds audiogram, basic speech acoustics, etc.)
What do you know about your options for how your child learns to communicate? Instead of launching into my own description of various communication modes (American Sign Language, Signed English systems, Cued Speech, Total Communication, Listening and Spoken Language, etc.), I like to hear from the parents first. What is their understanding of their options? Sometimes, families will only list one choice. Others have already thoroughly researched them all. Some families may have inaccurate or incomplete information about what each method entails. By allowing the family to share their perspective first, I eliminate one of the greatest sources of bias inherent in a communication options talk.
How do you envision your child communicating with you? What are your goals for him as an adult? Instead of making the communication options process a “choice” for parents, I like to let them lead themselves into a decision by matching what they know about methods with what their goals are for their child. If the parents can articulate goals, then I can help them find the communication methodology that will help them get there, if they haven’t already stumbled upon the answer themselves.
But at some point during the conversation, parents inevitably turn to me and ask the loaded question, “Well, what do you think is best?” And here is my answer: I am a Listening and Spoken Language Specialist, Certified Auditory Verbal Therapist. I believe that children with hearing loss can learn to listen and speak and communicate in the language of their homes. I believe that parents can be their children’s first and best teachers. I believe that children with hearing loss have a right to speak for themselves in the language(s) of their homes and participate in mainstream environments alongside their hearing peers. I practice this way because I feel ethically bound to provide services that are supported by research to produce positive outcomes for language, literacy, socialization, employability, and overall quality of life. AVT has a strong research base showing it does just that, and to provide anything less that the highest quality of evidence-based services is unethical in my opinion.
BUT…
As much as I firmly believe in the listening and spoken language option, I even more strongly believe that all parents have the right to choose the method of communication that is best for their child and their family. Full stop. I can provide them with information, research, and my opinion, but ultimately, the choice is up to them. And sometimes families make choices that I think are really, really not in the best interest of themselves or their child. But you know what? People make choices I don’t like when raising their kids all the time. From what they let their kids eat to what they let them watch on TV to how much candy they’re allowed each day. And you know what? Unless it’s abuse*, it’s none of my business. Families can make as smart or as dumb of a choice as they want for their child. After all, he’s not going to be sleeping on my couch when he’s thirty. Sometimes you just have to let it go.
AND…
Whatever choice families make, I want to support them 100% so that they can be GREAT at it. Whether that means getting them started in Auditory Verbal Therapy and on the path to CI candidacy as quickly as possible, or knowing when to refer out to professionals who can help them excel at ASL or Cued Speech if that’s their preference, I’m ready to move! If the family feels confident in their decision and ready to embrace it wholeheartedly, then my job is to step out of the way and do my best to help them succeed, whatever path they’ve chosen. Because by going through the steps and questions above, it really is their choice at this point.
*The question of whether or not denying a child auditory access through a cochlear implant is abuse or not is a very interesting theoretical proposition. Ultimately, it’s one that I will leave to the courts to decide, and I doubt such a case will ever be heard, based on the US legal system’s historical reticence to get involved in gray area cases of parental neglect/parental rights like this. Usually when the courts step in to demand medical treatment it is in cases where the procedure is the difference between life and death. Ultimately, though I do think the neurological changes that occur as a result of sensory deprivation have very, very serious implications, I don’t know that I would support court-mandated cochlear implants. If a family needs a court order to get a cochlear implant for their child, will they really be willing to do the follow-up necessary to ensure that the child gets full benefit from the device? I doubt it.
Elizabeth A. Rosenzweig 