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by Kate Moss, Family Support Specialist, TSBVI Deafblind Outreach

Originally published in the See/Hear Newsletter, Spring 1997 by TSBVI Outreach Programs

As professionals working in the area of vision and hearing disabilities, we frequently face a common dilemma --- parents who have not told their child about a progressive vision or hearing loss. We see the child struggling in different situations at school, and we worry that he or she will not be prepared when their vision or hearing loss becomes worse. We worry that they are confused about what is happening to them, but are afraid to ask for help. We worry that they are setting goals and dreaming dreams for the future that are destined for failure. If we could get started right now on developing those adaptive skills like cane travel or sign language, we know the child would not have to struggle so much when his visual and auditory senses change. We are afraid the child will ask us what is wrong and we won't know how to answer. We do not understand why his parents won't tell him what is happening to him.

Working with families through the TSBVI Deafblind Outreach, I have come to understand "why" a little better. My information hasn't been scientifically gathered; it's simply what I hear from parents who aren't "telling" their children. However, what they say makes sense to me and it fits with what experts like Dr. Ken Moses tell us about grieving issues for parents of children with disabilities. Perhaps if we understand where they are coming from in their silence and develop better strategies for supporting them, parents may find it easier to have these discussions with their child.

First of all, I think it is important for us to understand that each new disability diagnosis requires some grief work for most parents. It does not matter that the parents have come to term with the hearing loss or the vision loss long ago; when the other sense becomes an issue they must grieve that loss, too. This means that the family's lives will be turned upside-down --- again. They will go through episodes of denial, anger, depression, anxiety, fear, etc. in much the same way they did when they learned about the disability that was identified first. Coming to terms with the second or third or fourth disability diagnosis is frequently no easier than the first diagnosis.

What most parents tell me about this experience is that the professionals don't seem to want to allow them the time they need to come to terms with this loss. They expect them to be ready to deal with the issues the child is facing before they have come to terms with it themselves. They have a need to learn about the new disability and to organize their resources to address the problem before they can take action on behalf of their child. This is often a slow process. Once again they are faced with learning new terminology, making sure they have an accurate diagnosis, and understanding the implications of that diagnosis. They must learn about and connect with the system that can help them. They must figure out a way to talk to their child about what is happening in a way that the child can comprehend and handle. This is a formidable task.

These parents frequently have had the experience of professionals who made pronouncements about what their child would experience or be able to accomplish. "Your child will never walk." "Your child will never be able to hold a job." "Your child will never . . ." Many times these professionals have been wrong. After having this experience, the parents are justifiably skeptical. If we as professionals had these same experiences, we might also be reluctant to tell our children what the professionals have told us.

Even if the parents know that the professionals are correct in their predictions, how do you tell your son or daughter about something that is so devastating? What words do you use? What can a ten-year-old or a sixteen-year-old do when someone tells him or her that they will become blind or totally deaf? Parents are suppose to be able to make things right for their children. How do you fix something like this?

Many parents tell me they are trying to inform their child, but they aren't doing it quickly enough to suit the professionals. One parent whose child has Usher Syndrome, told me that she has gone to workshops to get information for herself and her son, told him that the problems he has with his eyes may get worse, but can not bring herself to tell him he will go blind. She is concerned that his dreams include a job which requires a lot of vision, and that he talks about getting his driver's license constantly. She tries to explain to him that he will have to pass a driver's test which might be difficult since he has night blindness. She asks what else is she suppose to do? Does anyone know for certain that her son will loose all of his vision or when his vision will be gone? The answer to her question is, of course, "No." These questions can't be answered with certainty.

What I think we can do as professionals to help the child is to get the best information possible to share with parents. We can help connect them with other families who have faced or are facing the same issues. We can introduce them to adults who have faced what their child is facing and can answer their questions about what they wished their parents had told them. We can listen and empathize with the struggles they face in a nonjudgemental way. We can believe they want only the best for their child and are doing the very best they can. We can learn about their fears. We can ask them how we can help.

I also believe that as professionals we do have specific responsibilities to the child. If we explain to the parent what our fears are and ask for their support in helping their child, I truly believe we can work together to find the answers to the situations that occur. We don't have to tell the child everything that may happen to him in the future to address his needs today.

Setting small goals for the child in coming to terms with his disability is not a bad approach, in my opinion. For example, if the issue for the professional is the child's safety in traveling around school or in the community, is teaching him to use a cane the only answer?

Perhaps we could look at ways to build supports around the child to reduce the danger as a first step. At the same time we could help the parents understand the difficulties of travel with night blindness and a visual field loss. We might arrange for them to meet with the Orientation and Mobility Specialist (apart from the child) to look at the child's typical activities at home and in the community and give them guidance on how to make those activities safer. Maybe an older student who is visually impaired and using cane travel could share information with the parents and perhaps later mentor the child. My point is, collaborating with the parents to find creative solutions to our concerns as professionals seems more helpful to the child than forcing our agenda.

There are many creative ways to address issues. One teacher developed a unit about how the eye works for her class and infused information about visual disabilities into it. In this way, she provided the child with some general information about how people with visual disabilities travel or read that did not single him out or make him feel different. Another teacher was concerned about how well a child could see an overhead. She had just completed a unit on the elections. She used the idea of having different opinions and voting as a way to let the child tell her what worked best (i.e., to have the ceiling light on or off when the overhead was used). She would turn the ceiling light on (or off) and ask who preferred it that way. She reinforced and validated the notion that it was okay to have different preferences.

Sometimes offering adaptive techniques as ideas to explore make it easier for the child to learn about a technique without saying they will need that technique later on. For example, a child who has relied on speechreading but may not have enough vision in the future to use it in every setting, might have the option of learning sign language in the same way another child might take a course in Spanish.

I believe if parents feel our respect for the difficulty of their situation and see how we truly care for their child, they will be more open to collaboration with us. However, if they feel judged (negatively) or pushed into a corner by us, they are naturally going to be defensive if not downright combative. A response we might have if we were in their shoes. This is their child. They know him better than we do. They will always be his parents and (hopefully) will always be involved in his life. We are only around for a few short years if that long. We must trust them to tell their child in their own way and in their own time. The reality is that they own the information about their child, not us. With our support perhaps they can share this difficult news with their child sooner and help him/her come to terms with it.