The Impact of Deafblindness on the Family

Chapters:

1. Introduction
2. Common Responses to a Diagnosis of Deafblindness
3. Parent to Parent Support
4. Sibling Issues
5. Personal Experiences and Professional Advice
6. Self-Care and Accepting Help
7. Planning for the Future
8. Redefining Hope

CHAPTER 1: Introduction

MINKIN: I started my career as a teacher of the deaf at a state school for the deaf. And I was a young teacher, and my students were high school kids — we weren't that far apart in age — and they would hang out in my classroom, and so many times, I would hear them talk about what their parents told them, that by the time they grew up, they wouldn't be deaf anymore, that was the major one that I would hear over and over. And I thought, "Oh, if someone could work with their parents," so that they could be comfortable with who they were, they weren't waiting until they graduated and became hearing, and they could be proud of who they were.

I've had the opportunity to talk to many families with deafblind children all over the world, and there are common themes, and that transcends that experience, transcends all of the many, many things, including culture, including area of the country, including from Boston or Seattle. And so I think the important thing is that everybody is on their own journey. And how can we as professionals support them and how can they support each other and know that they're not alone?

CHAPTER 2: Common Responses to a Diagnosis of Deafblindness

MINKIN: I think, particularly for parents, and sometimes for siblings, but what I talk about in the early stages when I have a chance to, or when I give talks, I usually talk about the fact that what really happens is a grief response. And that grief response includes those feelings, and they come up in different ways and different times through a lifetime.

But the ones I use, and everybody has their own way of describing this, but the first one is denial, and it comes up in different pieces with every diagnosis. So if the child is at an audiologist's office or being tested for hearing, and the parents say, "I don't think there's a hearing loss," or the parents say, "I think there's a significant hearing loss," or whatever, but it's easy to have denial. "This isn't going to happen. "I don't care what the professionals are telling me."

NARRATOR: In a photograph, we see a smiling young boy. His hearing aids are clearly visible.

MINKIN: And they deserve to have that time to think that and feel that, and in time have a chance to have that evolve — not that we all tell them what's going on, there's so many things going on for so many of the children. So the first one is denial. The next one is anger — this is just the way I use it, but anger. And they can be angry at grocery store clerks. They can be angry at the car dealer or getting your car serviced. Anger comes out in these strange places and they're like, "This isn't even me," or that they're feeling on edge, that, even within the family, they've changed and they're unhappy with that.

But to know that it's just part of a stage makes it, I would think and I hope, a lot easier. Another one is guilt, and people don't talk about guilt, but it could be something I did in high school and I'm getting paid back, and that's why this is going on. It could be so many reasons that guilt comes and they don't even realize that that's connected. When they have a chance to say it, it can fade away. The other one is sadness. So many people feel like they have to hold it in. Moms are a little better at expressing that, but dads, too, given a private place and a way to talk about that.

NARRATOR: A young man who is blind and holding a mobility cane is shown walking with his mother along a rural road. A field of corn is visible in the background.

MINKIN: And then the other one is acceptance. And people think, "Okay, I'm done with my anger." Well, don't we wish? But it comes up when somebody passes us on a road and we're disproportionately angry. So what I tell people is my feeling and my experience is that it happens in layers, and I use an onion skin. It isn't, like... "Okay, that's done, that's done." Wouldn't that be nice? But it happens in layers. And the more we find safe places to talk about those things, those layers keep going. But it will come up again, as long as we know what that is that we don't have to get so upset with ourselves. And that's what I talk to parents about.

CHAPTER 3: Parent to Parent Support

MINKIN: Fortunately, I had the opportunity to just start parent groups. So everybody that brought their child to this parent-infant program, which was a very large program in Seattle, I was given the opportunity to be able to facilitate a parent group. And I started right away, people said, "Parents will never talk, parents will never come to the meeting." And for 36 years, while I was doing that weekly parent meeting, they came.

And, as a result, many of the families I've been able to follow through all these years, and see that once they have the experience of being in a safe place to talk and getting to know each other in a way that they don't have to be superficial and they can be themselves, it changed. Their kids are friends, their kids have grown up knowing each other or in and out of each other's lives, and now I see the grandchildren who are growing up.

So it's definitely, in my experience, and then having the opportunity to travel and do parent groups through many of the deafblind projects and through Perkins, Hilton/Perkins project, it's the same.

NARRATOR: In a photograph, we see a number of families gathered under a post and beam roof. Several of the children are in wheelchairs, and at least one has a mobility cane.

MINKIN: It doesn't matter whether it's Poland or Italy or South America or Seattle, Washington. That parents put together having an opportunity, some get to know each other at one time or another, but that bond — when I did a research project several years ago and asked people, "Where was your support?" they said, "It was those parents we met in the parent-infant program." So I highly encourage parent groups in a comfortable setting without topics, and just talk.

CHAPTER 4: Sibling Issues

MINKIN: I don't believe there's a single way to help brothers and sisters or siblings, but there are a number of things out there -- Sibshops are still out and going, and going strong, and that's where they can go and talk freely and have activities with other brothers and sisters or other siblings of children with disabilities -- but the other thing is to know that it's phases.

How they react when they're little, there may be numerous phases throughout their lives where, on one hand, they're just adoring and, "Oh, look how wonderful..." they are, and then you see them the next year, and they're saying, "I don't want any part of my brother's life. I've had it." And that doesn't mean that's a forever feeling. And so for families and for all of us to remember, we've all gone through stages in our lives, and that includes siblings with deafblind or deaf or hard of hearing or visually impaired, any kind of disability.

NARRATOR: We see a photo of a young boy in a wheelchair being pushed around a dance floor by his brother. The brother wears a decorated crown on his head.

MINKIN: So I see these changes, and I've had some wonderful examples just lately, a number of the kids who had deafblind brothers that grew up at the deafblind family retreats. And they went off to college, and I just found out last week that they texted each other — these two hearing siblings with a deafblind brother — and said, "You're the only one I can talk to. "I really miss my brother. He grounds me." And I thought, "You know, that says it all."

It is really a wonderful thing. Does it happen to everybody? At some times, the one who wanted nothing to do with the deafblind brother or sister grows up, and guess where the sibling lives? I mean, that the deafblind adult lives with his sister and brother-in-law. So those stories happen over and over, when you can track the family through the years.

CHAPTER 5: Personal Experiences and Professional Advice

MINKIN: Well, what you should believe is whatever your heart and being believes, but there are so many people that try to fix it for other people. And the fix is really an inside job. The whole experience is an inside job. So the father in a family may have different experiences, and then the mom has another experience.

And the "Who do you trust?" issue comes from feeling what's right and not just believing when a particular professional has one method or another professional has the opposite method and they feel torn. It is more about being able to talk to other people with a shared experience and then making decisions on their own for what they feel is right for their children, and have a safe place to talk.

NARRATOR: In a series of photos from a camp gathering of families with children who are deafblind, we see groups of parents and siblings interacting. 

MINKIN: It is about permission to listen to oneself, it is permission to contact other families. The Internet has changed a lot of what's gone on because somebody in a small town in one state can be talking to someone else who just got all kinds of information about a particular thing, and they have found each other, clearly have found each other, on the Internet.

And then, even on the Internet, not everybody has the answer, not every expert. Some experts in vision don't understand at all the combined vision-hearing loss. Some experts in the field of hearing or deafness or audiologists, even, or anywhere, that they don't have that combined vision-hearing loss. So the experts are not always, and sometimes not at all, the place to go and get that real information that you're going to need to make a decision if you're a young parent.

CHAPTER 6: Self-Care and Accepting Help

MINKIN: I think the meaning of that is finding the time to take a break, finding the time to do something you used to do, or getting together with a friend when you think you can't leave your child, even though some people have nursing care and they're afraid to leave. What is the definition of that? It is to stop once in a while and pay attention to what you might need. And the amazing thing that happens repeatedly over and over — and hopefully most of us have had some experience with — when you take a break, everything seems a little less difficult to deal with.

So what does it mean? It means something different for everybody, but we need to keep paying attention to it. I mean, somebody can offer help, and it doesn't mean they want to take care of your child, but they could go to the grocery store for you if you needed something, or you can find, hopefully, someone. Usually people say, "Oh, thank you for letting me do something." And it is very difficult. Some of us grew up in cultures where you only asked family. But you don't live around your family anymore.

And so there are many things that, if you start practicing, just simple things. It doesn't mean that you have them do childcare, but there are so many other things that might be helpful for you. Even making phone calls and making appointments or things that somebody could do. We all love to give and do something for someone else, or most of us do, I'd like to believe, and so to allow people to do that is a gift in itself.

CHAPTER 7: Planning for the Future

MINKIN: Well, I tell them that estate planning is critical and they need to do it, because they can't make assumptions and it has to be on paper what will happen, what needs to happen, and that they can change it through the years — so they may have a particular person in mind, but that person is no longer in a position to do that. So keep it fluid and to keep reviewing it.

But what I've seen is a number of families now that the parents are gone and somebody steps in and it has changed, but it's a brother or sister, or it's their care provider from when they were in school, or it's somebody in the community they met in a sign language class and have been lifelong friends. So there are many places where that happens, but you can't pretend it's not going to happen. You have to plan for it.

NARRATOR: In a photograph, a young man with a hearing aid and glasses stands in the aisle of a supermarket. As part of an exercise to develop independence, he is being handed a list of items to find and purchase.

MINKIN: I have seen a number of things emerge in Seattle. There's a group home, a number of group homes, and parents never thought they'd have a child in a group home. And yet the group home is run by deaf people and they all sign, so their kids have all this communication that they never dreamed they'd have. And they get on the boards and make sure that the rules are set.

What do we know in the future? I don't know, but I do know that the number of people that I've known and the families that I know where the parents are now gone, some very incredible things have been set up. So I'm hoping there's information out there on the Internet and that they look for it and find it and continue to update it and be creative.

CHAPTER 8: Redefining Hope

MINKIN: Hope usually is a medical hope. Hope is often at the beginning, when I talk to young parents — and we talk to young parents, they describe hope as "the cure." Their hope is there. And then they find out that that hope doesn't quite get them there. But the reality of hope for, I think, all of us is that we redefine it along the way.

NARRATOR: In a series of photographs, we see several children who are deafblind participating in a talent show. Some are in wheelchairs and are assisted by a parent. One young man plays a guitar and sings.

MINKIN: The more we get to know our children, maybe we hope they're going to be great football stars or whatever, and that hope changes when you find out they really are classical pianists or whatever it might be. Or that with deafblind kids or with deaf kids, even, that so many parents, during the rubella epidemic, had the hope of the cure.

And so often, I've seen the lives of children so different than I knew what their parents thought of their lives or hoped for their lives, but they're wonderful lives. So what is hope? What is hope for all of us? I think it has to be redefined often and on the way, and the more we get to know our children and the more we get to know each other, that that changes, and it's okay.